The Smith Family Scoop

HeARTS for ART: Benefit Fundraiser

2012-02-01T23:16:00.000-06:00

For all of those that live in or near Collin County, Texas:
This Saturday, February 4th, in Allen there will be a benefit called HeARTS for ART. It is done in memory of Samantha Schmidt, a local 10 year old that passed away this past Monday from leukemia (AML).

Last summer she was diagnosed with AML and was treated at Cook Children's in Fort Worth. While on treatment, Samantha worked with an art therapist and discovered a wonderful talent and passion for art. Samantha and her family decided to help fund research to find a cure for this dreadful disease in order to help others like them. Her friends want to show Samantha and her family how much we, as a community, love and care for them. To do this, Samantha will be remembered with a silent auction and benefit that is all about her passion - ART!

There will be art focused activities, a raffle for items such as the latest Samsung Galaxy S Tablet and silent auction items including a piece donated by Allen’s own world renowned artist Amanda Dunbar.

Here's the scoop:

When: Saturday, February 4th from 3:00 - 7:00 pm
Where: 105 S. Anna, Allen (the old central fire station)
Benefitting: Cook Children's AML Research
For More Information: send an email to heARTbenefit@gmail.com

Please consider going to this benefit. Sounds like a good time for an extra good cause.

And regardless of whether you can attend or not, please be in prayer for Samantha's family and friends. I did not know this little girl, but have friends that did. It sounds like Samantha was a very special child, loved by many.

Much love,

Not Fair

2012-01-28T20:44:00.000-06:00

Gavin's been telling us about how "not fair" things are lately. He won't verbalize so much what it is exactly that's not fair. But when he doesn't want to do something, we hear the "not fair" break out. At first it was just reserved for home. This past week, however, I was called back into his physical therapy appointment because he was completely uncooperative and saying (maybe even screaming) "Not fair!!!" Proud mommy moment, right? Yeah. My thoughts exactly.

We've had a rough string of poor behavior with Gavin. School days are either really good or really bad. Some days I just want to cry and I wonder how in the world this was God's plan for Gavin this year. Surely, I've made a mistake and we need to enroll him immediately into our local district. Then the good days roll around and I'm reminded once again why we're doing it this year. I feel a bit like a tree, blowing back and forth in the wind. And no, I'm not so proud of that either.

Jeff and I talked about it last night and decided Gavin's right. It's not fair. Kids are all forced to learn this hard lesson sooner or later. Gavin was just forced to deal with life's harsh realities a bit sooner. Okay, way sooner. We didn't choose to write it this way. We never would have chosen for Gavin to have cancer. But God allowed it. And we are blessed beyond words that Gavin's still alive and well today to tell us how unfair he feels it is. I can process it that way because I'm an adult. Gavin's only 7 years old.

He's still young. And he's trying to sort through it all in his own way and in his own time. I want to allow him grace to do that without giving him the freedom to be disobedient in the process. It's a fine balance. I wish I could see the script that runs in his little mind. To really know what he's telling himself. To see if I could help him better understand it all.

Is he afraid? Just tonight after I tucked him in he asked me when his next MRI was. He didn't want to talk more about it. Just wanted to know when it was.

How sad is he? I know he says it makes him sad that he doesn't have more hair. But what's the magnitude of that sadness? He realizes that he's not like the others. But how different does he realize he is? How left out does he feel?

Is he mad? Now that he has learned that not everyone goes to occupational, physical, and speech therapy multiple times per week, is he bitter? Clearly, a number of things in life are harder for him to accomplish than his peers. Is he frustrated?

Does he feel loved? Unconditionally loved by his Mommy and Daddy. And most importantly, by Jesus. Or does he wonder why we make him do all of this extra stuff that no one else he knows has to deal with? Does he wonder if we let it happen? Even made it happen to punish him?

We know he's a miracle. We know God has a plan. We know this has all been allowed for very specific purposes. But as a 7 year old, I'm just not sure Gavin can comprehend all of that. And if he could, I'm not sure he would appreciate it. Because kids desperately want to be "normal." And while Gavin had a solid 3 years and 4 months of a normal childhood, I'm pretty sure he doesn't remember much of it at all.

We'll get it all worked out with Gavin. I don't think he's going to wake up one day and suddenly feel that it really is fair after all. But, I pray that he will accept it all a little more easily and enjoy the life that he has been blessed to have. May God give us the wisdom to help him get there.

Thank for you continuing to follow our life story. We all have a story, right? Our family is blessed to have people that care about our story and want to know more details so that they can better lift us up to the Lord in prayer. You showered us with prayer during our darkest days. And you continue to check in to see how you can shower us still. Thank you hardly seems adequate.

Much love,

Meet Phoebe Fair

2012-01-15T20:26:00.000-06:00

I would like to introduce you to Phoebe Fair. Isn't she beautiful? She's 2 and 1/2 years old. The youngest of 4 to missionaries Nathan and Amey Fair. And she was recently diagnosed with a brain tumor at Children's Medical Center Dallas.

I learned of this family through my dear friend, Joy. It seems Joy's cousin is married to Amey's sister. Joy thought I might want to read their CaringBridge site (www.caringbridge.org/visit/phoebefair) and even reach out to this family. She was right. I looked over their site and immediately left a message with my email address, letting them know we'd be happy to speak with them if they wanted to. Phoebe's father, Nathan, responded with his cell phone. I called him last Wednesday night.

During our conversation, Nathan had asked for more details about Gavin's specific type of cancer. I explained that it was AT/RT and told him a bit about that type of cancer. I explained that Jeff and I would be in Dallas this weekend (a stay-cation of sorts to celebrate our 11th wedding anniversary) and that we'd gladly come talk with them if they would like to.

Later that same night I received an email from Nathan. The pathology report had come in for Phoebe's tumor. Phoebe had been diagnosed with AT/RT as well. He and Amey would love to meet with us if we had time. My stomach turned as I read the news. What are the odds? AT/RT is so rare. Yet, a friend sent me the CaringBridge site for this family. I happened to check it out that same day and leave a message. The father happened to respond immediately. And I told this father about AT/RT just hours before he finds out that his precious daughter also has AT/RT.

Jeff and I met with Nathan and Amey earlier today up at Children's. To say that they are a sweet family is a terrible understatement. They recently returned from Mexico, where they had served as missionaries for a few years. They are in between assignments, so they have no home. They are currently looking to rent something in the Dallas area, preferably as close to Children's as possible. If you know of resources to help this family out, could you please email me at staciesmith19@hotmail.com ASAP? Please put Phoebe in the subject line.I'll forward the information along to them.

As awful as it was to meet this family under these circumstances, we all agreed that we felt God had his hand in our meeting. We've been there. We get it. All too well. And we're willing to help them navigate the new journey as much as possible to help ease their way.

2 Corinthians 1:4
He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

Please join us in praying for a full healing for sweet Phoebe. You can see their CaringBridge site by going to www.caringbridge.org/visit/phoebefair. If you've never visited CaringBridge, you have to set up a password to get onto the site. No big deal. Please don't let that hinder you. I have also added a link to the left side of my blog, under the heading "pray for these." I know you all are an amazing group of prayer warriors!

Much love,

MRI Results

2012-01-12T14:45:00.000-06:00

Gavin had an MRI this morning. The neurosurgeon looked at the scans when we went to see him for a shunt check after the MRI. (It's a mandatory trip to the neurosurgeon's office after an MRI. Gavin has a programmable shunt. It's programmed by magnet. And the MRI is one huge magnet. So we have to check to make sure the shunt didn't get reprogrammed during the MRI.) Gavin's neurosurgeon said today's scan looked great. He said it wasn't the official reading because the neuro-radiologist does that. However, I consider a neurosurgeon's reading to be pretty official. He looks at scans on a VERY regular basis. Will let you all know if we hear anything different.

1 Chronicles 17:16
...“Who am I, O LORD God, and what is my family, that you have brought me this far?"

Praising God for how far He has brought Gavin. We'll never understand why certain children survive and others do not. And we recognize the fact that we've never been guaranteed survival in Gavin's case either. Just so grateful for the continued good news on the MRI front.

Thanks for checking in.

Much love,

Friends of Courage

2012-01-09T23:21:00.001-06:00

Gavin had a play date over Christmas break with a fellow cancer survivor. Many of you that know us locally may be familiar with him. I thought his CaringBridge site was linked through my blog. And I just realized it wasn't. Now it is. His name is Philip Endres. He was born roughly a month after Gavin. He lives VERY close to us. And he was diagnosed with leukemia the SAME day that Gavin was diagnosed with his brain tumor in 2008, though at different hospitals in Dallas.

Odd, huh?

I met his sweet mother at a mutual friend's birthday party back in 2009 at Chuck E Cheese. Philip was sitting next to Gavin. I was standing back a bit, taking it all in. I think it was Gavin's first party to attend since he ended treatment. Philip's mom was near me and asked me if my son had cancer. It was obvious. I was used to the questions. His hair was just starting to sprout post-treatment. I said that he had just finished treatment. I figured she was just curious about this nearly bald child. So I was shocked when she told me that her son also had cancer and was currently on treatment. He had hair at this point in his treatment, so I hadn't even thought about him having cancer.

Philip's mom and I have kept in touch since then, but our boys hadn't actually gotten together. Philip just ended his 3-year leukemia treatment last summer. We decided to have them meet up for a play date over the Christmas break. Philip came over to our house on a day that Garrett was heading to a friend's house to enjoy his own play date. The boys shuffled back and forth between the game room upstairs and the living room downstairs. They played so well together. It was music to my ears to hear these two survivors play like any two other boys would do. At one point they asked for some help upstairs. I walked into the game room about the time Philip noticed Gavin's Beads of Courage.

Beads of Courage? Perhaps you aren't familiar with them. Basically, it's a program run through the hospital for children with specific diagnoses. Children are given a strand and earn beads based on things they endure. For example, a red bead for a blood transfusion. A rainbow bead for therapy. A white bead for chemo. A yellow bead for staying in the hospital overnight. A maroon bead for a ride in the ambulance. A kid with a hat bead for losing hair. A star for surgery. And on and on. My favorite? A purple heart for ending treatment. Gavin's hospital started the program about 2 months before he ended treatment. If I remember correctly, Gavin was the first child at Children's Medical Center of Dallas to start a strand. You should see how long his strand of beads are!! In only 2 months. I can only imagine how long it would have been had they started when he was diagnosed.

Gavin loved the beads (and still does). At one point, he decided that he wanted his own bead. We went to Michael's and he chose a set of blue beads that matched his beloved Baby and Daddy doggies perfectly. He put one bead on his strand. And he gave a slew of beads away to nurses and doctors that had a "provider" strand going as well. He will still pull out the beads now and again and talk about what he remembers from the beads and which ones are his favorites.

So that's a little history on Beads of Courage. Back to the play date...

I walked into the game room about the time Philip noticed Gavin's beads of courage. In a bag. On a shelf. Not strung across the room. Any other child would have passed them by. But not Philip. Immediately, he knew what they were. And his face lit up as he said, "Hey! I have beads too!" He and Gavin pulled out the beads and talked for a few minutes about them. They mentioned their favorites and many that they had in common. And then they moved on to play with something else.

You had cancer. I had cancer. No big deal. Let's keep playing. ;)

I stood there in complete amazement. The unspoken bond that these children must have! If we decide to place Gavin in the local school district next year (and yes, it's already time to think about next fall!), he and Philip would attend the same school. In the same grade.

Two boys who were forced to have such courage at such a tender age.
Survivors.
Friends.

While they didn't know each other back in March of 2008 when their worlds of "normalcy" came to a screeching halt, I have to think that God knew that eventually they would meet. At Chuck E Cheese, of all places. ;)

Much love,

Too Much Of Me. Not Enough Of Him

2012-01-08T00:07:00.000-06:00

Happy New Year! I've been away from the blog for a little bit. But, I'm feeling the rhythm now and think I just may be on my way back to regular blog posts.

As 2011 came to a close, I did what so many of us do at the end of each year. I took a little time to reflect on my current life. Time to figure out what seemed to be working for me and what needed change. And the more I thought about it, the more I heard the same mantra reverberate deep within me.

There's too much of me. And not enough of Him.

While I may have had the best of intentions in life, I realized I was hyper-focused on myself and those closest to me. And my primary focus wasn't on Jesus. Like it should be. It's not that He wasn't a large part of my life. He was. But, was he really the center of my life? And I heard it again...

Too much of me. Not enough of Him.

So, my plans for 2012 are to make Jesus the center of my life. I have some plans to make this happen. For example, I'm going to read the Bible in its entirety again. I skipped the last two years, thinking my Bible studies and such would suffice. Ha! It's not the same, friends. If you haven't read the Bible cover to cover, please join me. Go to www.youversion.com/reading-plans/all to pick a reading plan. When you break it up like the plans do, I think you'll find it to be enjoyable.

I am going to facilitate another women's Bible study through our church. It will be on Wednesday nights, starting January 25th. It's a 10-week study by Stormie O'Martian called The Power of the Praying Woman. If you have read anything by this author, you will know this will be a good study. Love her work! I watched the first video session and knew this was the one to do. So ladies, if you are in the Collin County area, please consider joining us. Click HERE to go to the church site. Online registration should begin soon.

I have another something through the church that I hope to get going soon. The idea hit me during a church service a couple of weeks ago and I'm pretty sure that was a "God thing." I'm excited to share more about that, but will wait until the plans are more solidified.

Just a few of my 2012 plans to have more of Him and less of me.

As for the general update in our family, things are going well. Garrett just turned 5 and says he feels older already. He's likes doing 1/2 preschool at the church and 1/2 homeschool with us here at home. He looks forward to starting tee ball again in the spring and says he'd like to be Spiderman when he grows up. ;)

Gavin feels great and is losing teeth left and right. He lost two upper teeth over the Christmas break. His gummy smile makes me smile. We have pretty well finished curriculum that is considered kindergarten level in our local school district and have moved into first grade work. I find that to be a major perk of homeschooling him this year. If we decide to move him into our local school district next fall, first grade won't be all new information.

Gavin has a regularly scheduled MRI next Thursday. This is the first time we've gone 6 months without an MRI. Thank you for keeping Gavin in your prayers. I feel good about this scan.

Thanks for checking in on us. I'll try to post more regularly. Anything in particular you all think I should blog about in 2012?

Much love,

Garrett's Turn

2011-12-13T21:48:00.000-06:00

Garrett doesn't get nearly as much "press time" here on the blog as Gavin does. I promise that's not the way I envisioned this blog. But, life has a way of changing our plans, right? Please know that Garrett is super special to us, even if he hasn't been discussed with nearly the frequency as Gavin. Oh, how we love that boy!

Garrett's said some cute stuff lately and I wanted to document it while it was fresh on my mind. For those of you that don't know Garrett all that well, let me just say he's a thinker. Always thinking of something. And he'll come up with the most interesting comments and questions at the most interesting times. And you will realize just how in depth he's been thinking on something.

For example, we were at Six Flags the other day, standing in line for a kiddie roller coaster. Garrett's birthday is around the corner, so he may have originally been planning his own birthday celebration in his mind. But that apparently changed to thinking of Jesus and his birthday. Out of nowhere he asked me, "Mommy, where is Jesus going to go for his birthday?" (Surely, He would have a party, right?) Not sure what to say, I explained that Jesus likes to celebrate in our hearts. That seemed to suffice and he nodded in understanding. I went ahead and added that his Sunday School class would soon have a birthday party for Jesus. His mouth dropped open and his eyes got super big. He was thrilled that Jesus would have a party after all. ;)

A few days later, we were driving to therapy. As we neared the final turn before the clinic, I heard Garrett say to Gavin, "We're getting close to Bethlehem now!" I had no idea why he said that, but thought it was so cute. I figured he was just really in the spirit of Christmas and pretending we were heading to Bethlehem. It was only after therapy that we turned the opposite direction onto a completely different street and saw a large nativity scene in front of a local business. Garrett was so excited as he exclaimed, "Look Gavin! There's Bethlehem!" It made so much more sense after that. I was just shocked that he knew his way around our city so well already and was thinking of how to get to the nativity scene. We rarely even drive that way.

Obviously, I'm biased. I'm his mother. But I think this has to be one of the sweetest kids I've ever known. He has always seemed to have a sweetness about him, even as a baby. But, I think watching his brother battle cancer did a thing or two to help him as well. You all know I would have given anything for Gavin to not have cancer. But since I didn't get the chance to choose, I'm glad I can at least say there are a number of blessings that resulted from an ugly thing like cancer. Like Garrett's ability to think of others. I'm pretty sure it was enhanced during those early days.

Garrett was only 14 months old when Gavin was diagnosed. I remember when he was probably only 18 months old and Gavin was super sick from his chemotherapy. Gavin and I were on the living room floor, while he was vomiting once again into a basin. It was one of those days when we just knew things would get worse and we'd head to the hospital. Garrett came over to Gavin. With the sweetest look on his face, full of absolute compassion, he began to pat Gavin on the back. Even as a toddler, Garrett understood just how awful this whole thing was for his brother. And he clearly wished Gavin was all better.

I hated that Gavin had to live it. And I hated that Garrett had to watch it. There were so many times that Garrett had to wait on something while I tended to the immediate needs of his brother. He never complained. And still there are many times that Garrett waits on his brother. Most commonly, it's waiting at the therapy clinic these days. And still, he never complains. Sweet, sweet boy.

We are blessed beyond measure. God knew what he was doing when he designed Garrett. I can't think of a better personality He could have added to our family when He blessed us with this child. Only God could have known what would be necessary to weather such storms at such an early age.

I promise I'll try to do better in 2012 at posting more about Garrett. He's a neat kid.

Much love,

My Love For The Winter Hat

2011-12-11T20:47:00.001-06:00

There are so many things that I love about this time of the year. Obviously, Christmas makes number one on my list. But this weekend I was reminded of a simple thing about this time of the year that I love so much.

Hats. Winter hats to be more specific.

Sounds odd, I know. But remember that Gavin has very little hair. And Gavin is very self-conscious about his lack of hair these days. Just tonight at bedtime, he talked again in detail about how sad he is that he doesn't have hair like everyone else in his Sunday School class. The hair prayer continues...and my love for winter hats flourishes in the meantime.

We took the boys to Holiday in the Park at Six Flags yesterday. It was a little chilly, so the boys both wore winter hats the entire time we were there. I loved the fact that under the cozy, warm hat was a Gavin that got a break from the usual stares. While he has never said anything to me about people staring at him, I think his worries about his hair stem from the fact that he gets stared at A LOT wherever we go. Sometimes people ask about why he doesn't have "any" hair or why he has a bump (the shunt) or why he has so many scars. Sometimes they just look his head over long and hard, as if he's from out of this world. When he has a winter hat on (rather than his usual ball cap), all of that is covered up. Even the hearing aids. He blends. And the stares dissipate.

While I think Gavin is absolutely handsome just the way that he is, I love that winter hats give him some reprieve from the public eye. And I know he must enjoy the break from their attention as well. Thank you for continuing to join Gavin in The Hair Prayer. I believe God can give Gavin this miracle and pray that He would.

In other excitement, Gavin recently lost his second tooth. It was his first top tooth and another one is loose up there as well. He might be singing "All I Want For Christmas Is My Two Front Teeth" if it falls out pretty quick.

Also, we went to the endocrinologist for Gavin's first checkup since we started the growth hormone shots. Good news! He's grown some already. We were prepared that it takes some children a full year to grow at all after starting the shots. But, Gavin's grown almost a full inch since September! I had noticed that a few of his shirts seemed shorter, but hadn't really measured him. I hated to get his hopes up by measuring him at home all of the time. He's very excited that his "growing medicine" is working. And his ears are finally getting bigger, which means he will need new hearing aid molds because the current ones aren't staying in so well these days. When he got his hearing aids well over a year and a half ago, the audiologist said most kids get new ones every 6 months or so because they grow so much. Gavin's still on his first set.

It's the little things that make my heart smile. A reprieve under the cover of a winter hat. A toothless grin. Growth of almost an inch. And new hearing aid molds. But most of all, Christmas as a family of four once again this year.

We have much to be thankful about here. Thanks for checking in on us.

Much love,

Like Martha Stewart, Minus The Jail Time

2011-11-30T22:21:00.003-06:00

It's official. I'm making my own laundry detergent. I know some of you must think I've gone completely off the deep end now. But hear me out.

Quite awhile back we switched to Seventh Generation laundry detergent to try to avoid some of the harsh chemicals that are typically used in laundry detergents. (Having a child that has gone through cancer makes you look at the world and the toxins within it a bit differently, I suppose.) I have loved their detergent, but not so much their price. And then my mom told me she was making her own.

It took me by surprise because she isn't usually making homeade concoctions like this. I remember her vividly saying that Martha Stewart had gone too far when she started making her own mayonnaise. ;) Regardless, she found a "recipe" for some do-it-yourself, all natural laundry detergent and was trying it out. She offered to give us a batch of it as well. I tried it and quickly became a fan of it. In fact, I just made my very own batch the other night.

I joke with my mom about how much money she's going to save us. It's wonderful!!! I am just shocked that it takes very little time (and even less money) to make the stuff. Everyone should be taught this before heading out into the real world. Seriously.

I posted on Facebook while whipping up my first batch that I felt a bit like Martha Stewart, minus the jail time. I received a number of comments asking for the recipe. I said I would post it here and link up there. Well, that was a couple of days ago and it looks like toes are tapping because I'm getting messages asking where the recipe is. So, here it is, folks! Hope you enjoy it and the money you're about to start saving. Let me know what you think!

Ingredients for one batch:
1 cup Borax
1 cup Washing Soda (not Baking Soda)
1 bar Ivory Soap

(You can find the borax and washing soda in the laundry section of the store.)

1. Grate the entire bar of Ivory soap with a cheese grater. Don't worry, it's soft soap and grates with very little effort. I think it took less than 5 minutes to grate it up.

2. Mix the borax, washing soda and grated soap into a bowl.

3. Make the detergent super fine by mixing it in a food grinder. I used a mini food grinder because it was what my mom had used and worked well. I mixed 1/3 of the batch at a time. I turned it on for a few seconds and then shook it around a bit and went some more until the powder looked pretty fine. (I would guess it took less than a minute each time.)

4. Put the detergent into a storage container of your choice.

5. Use 1-2 tablespoons per load of laundry. Yes, just 1-2 tablespoons!! I put mine in before the laundry goes in, right when I turn the water on. It dissolves quite easily.

We haven't used fabric softener in years, but Mom said she quit using fabric softener when she started using this detergent. She says her clothes are softer than ever.

Remember, I have two boys. So we have our fair share of stains. While I do pretreat stains, this detergent is removing stains just as well as my other detergent had been.

There's another recipe for liquid detergent out there, but it sounds like more work for the same end result. Since the powder dissolves so easily, I don't think the liquid version is worth it.

All natural, cheap, easy-to-make detergent. Jeff and I did the math and it came out to less than $2 per batch. And at 1-2 tablespoons per load of landry, it lasts quite awhile.

You can thank me later. Merry Christmas, friends!

Much love,

Gavin Requests The Hair Prayer

2011-11-18T23:56:00.000-06:00

Gavin turned 7 last week. I felt great reverance right before he blew out his candles, knowing that we didn't know if we'd ever see his 7th birthday or not. I feel so blessed to have him here with us.

He's made some great gains this fall in therapy and in school. He recently finished his first baseball season. And to top it off, he lost his first tooth. As I posted on Facebook when we realized it was loose, normal milestones make me giddy. While I still have a lot of the same frustrations that come with most parents, I am pretty sure my appreciation for normal stuff is higher than average. ;)

And yet, the ramifications of what Gavin's been through still show through in various ways. For a little while now Gavin has been bringing up his prayer request for more hair before our bedtime prayer. He didn't make a big deal of it, just said he wanted more hair.  Tonight, however, the conversation went a bit further. Instead of just saying he wanted more hair, he expressed how badly he wants to have more hair. As he twirled his fingers through my long hair, he said he wants "lots of hair," like mine. "Big hair." (Not sure what that means, but I'm pretty sure it's way more than he currently has.) He wants "so much more hair - like everybody else in the whole, wide world." It clearly bothers him now that he doesn't have anywhere near a full head of hair.

As my heart was breaking for him and I was fighting off the tears, we talked again about how the radiation that helped get rid of his cancer made it difficult for his hair to grow back. I told him that I think he's absolutely handsome with a little or a lot of hair. He didn't agree so much. So I quit trying to rationalize it all for him. I went back to square one and said that I would pray for a lot more hair with him. And that appeared to be enough for him for that moment.

I knew this day would come. I knew this conversation would break my heart. And I knew I wouldn't be able to make it all better when he told me how much it bothered him. And yet it still hit me pretty hard.

Gavin's oncologist made it pretty clear to us that what hair a child gets within 6 months of ending treatment is generally all they are going to get. Some kids that get whole brain radiation don't get all of their hair back. Some do. Gavin's been off treatment now for nearly 2 and 1/2 years. And yet his hair looks like he's recently ended chemotherapy.

Maybe it's not in God's plan for Gavin to have a full head of hair. Have I written about that before or just talked about it to other people? I can't remember and honestly don't feel up to the research for it tonight. But, I've often wondered if God didn't want Gavin's hair to come all the way back so that he would stand out a bit more. People would be more likely to ask what happened. We'd be more likely to share his story and the way that God worked through Gavin's cancer. And as great as that sounds, I'm not going to lie. I want my son to have hair because I want him to feel okay about himself. Don't we all? Even if it is part of God's plan for Gavin, I just hate knowing this is bothering Gavin. It hurts me to see him sad about his differences.

I've talked about the hair prayer on here before. But, it's been awhile. And honestly, I've not been praying for more hair as fervently as I should.  Many people probably think it's silly to pray about hair, given what Gavin's been through and the scientific odds not in our favor for new growth. However, I disagree. God made those hair follicles. He can recreate them as well. And if he chose to do so, long after science could say it grew back on its own, wouldn't that give God glory as well? I think so. Because God knows our hearts and wants us to bring our concerns to Him.

For now, I will not have the "this is all the hair you're going to get" conversation with Gavin. Instead, I will lead by faith, telling him that we know it's possible for God to grow more hair if He wants Gavin to have more hair. We'll ask God for more hair. And lots of it.

We'll gladly take your prayers as well.

Gavin's Hair Prayer Club.

I'll keep you posted.

Much love,

A Note On Thanksgiving

2011-11-09T22:28:00.000-06:00

Thanksgiving is fast approaching and I'm noticing many of my Facebook friends are posting a daily blurb on what they are thankful for. I like it. I did several Attitude of Gratitude posts awhile back. It was good for my soul. I should write more of them.

As I mentioned last week, I am in the middle of a Beth Moore Bible study called Living Beyond Yourself: Exploring the fruit of the Spirit. Love it! In our recent video, Beth Moore discussed the importance of giving thanks. And I thought she had a very interesting point that I couldn't resist sharing in light of this current season of thanks. I'll be paraphasing what she said, of course, but hope you get the point.

Philippians 4:6-7
Don't be anxious about anything. But in everything, with prayer and petition, with thanksgiving, present your requests to God.

Beth Moore quoted this scripture and discussed the importance of that thanksgiving part. She said that when we give thanks to God for all that He has done for us before we request anything else, it's as much praise to Him as it is a good reminder for us. It jogs our memory of what God has already given us and carried us through. And as we remember how good He has been to us, our faith is strengthened as we ask Him to help with something else. We can present our requests to Him with a stronger belief that He will see us through our current situation as well.

_________________

Did that hit home with anyone else? Or am I the only one who had never thought of it in that exact light before? I have a feeling I'm not alone. That's why I chose to share.

Happy (early) Thanksgiving to you all!

Much love,

Give Back With Gavin

2011-10-28T22:36:00.002-05:00

Gavin will turn 7 years old in November. In an effort to honor Gavin's continued survival, a sort of tradition we've got going is to take some donations to the Center for Cancer & Blood Disorders at the Legacy Campus of Children's Medical Center of Dallas. The donations are given in effort to improve the quality of life for the children that are in the midst of their fight for life. These kids spend countless hours at the cancer clinic, especially in the infusion area.

We'd love to give you all the opportunity to join in on our fun again. You all have done such a great job with this in the past. And can't see first hand what an impact you have make through giving to this cause, just know that each donation touches the life of a child with cancer personally. This year, we'll be donating prizes and snacks.

The Prize Closet
Oh, how kids love the prize closet in the cancer clinic. This beloved collection of treasures supplies the children in the CCBD with a prize every time they are poked. And yes, I mean a needle poke. Frequent bloodwork, shots, port accessing. These kids get poked a lot. And the staff feels they deserve a little something for it. And I agree. The thought of getting to go to the prize closet makes these kids that much tougher during a rough experience like a port access. And, it usually gives them something new to play with while they are at clinic that day and then to take on home with them.

The prizes for this closet are not part of the CCBD budget. Money has to be allotted for more important things, like buying the latest and greatest in technology to help save lives every day. So, the CCBD relies on donations from others to keep the prize closet stocked. They need OUR help.

It's fun to buy prizes for the prize closet. We've taken some prizes in here and there to give back to the closet since Gavin finished treatment. The boys absolutely LOVE going shopping for the prize closet. Surprisingly, they never ask for something for themselves when they know we're shopping for the closet. And they have such joy as they hand over the bags of prizes to the nurses at the CCBD. I figure it kills two birds with one stone. We help maintain the prizes and the boys get to learn about the joy of giving to others. It's that simple!

Prizes come in all shapes and sizes because the clinic treats kids of all ages. Both boy and girl prizes are necessary. Spend a little on each prize or spend a lot on each prize. You decide. Regardless, know you are going to make a child's day!

There is one very important rule anytime we give to the CCBD. Every item must be BRAND new. This is not because the patients are that particular at the CCBD. It's because the majority of them have very little, if any immune systems to rely on. Items have to be new. No exceptions.

Snacks & Drinks For The Infusion Area
The infusion area is a collection of private rooms around a central nursing station. The rooms are for patients at the CCBD for outpatient infusions. Maybe it's a blood transfusion. Maybe it's all day chemotherapy. Regardless, most kids are there for at least a few hours.

Gavin spent so much time in the infusion room, the staff lovingly referred to one specific room as "Gavin's Room." They treat you like family in the clinic, which makes the thought of chemotherapy dripping through your child's body a little more tolerable.

One perk of the infusion room at the Legacy clinic is the snacks and drinks. Gavin didn't really partake in many of them because he really only wanted water during his cancer treatment because of his extreme nausea and vomiting. TPN & lipids given through is port provided him with his nutrition. But, that's not the case for most kids there. And having some snacks there on hand provides one less thing for these parents to have to remember to pack for such a long clinic day.

Drinks to consider would be juice boxes, Gatorade, Sprite and the like. They have a ice and water machine there in the clinic, so bottled water is not really needed. Good snack options would be items such as goldfish, pretzels, fruit snacks, graham crackers, jello, fruit bars, granola bars, etc.

There are two very important rules we must follow in donating food or drinks to the clinic. First of all, everything must be individually packaged. No big bags of pretzels to share among several patients. And the outer package of item must have a expiration date on it. It's just to keep everything fresh and safe for the kiddos.

Here's How To Help
1. If you live in the Dallas/Fort Worth area, let me know if you have a donation to drop off. We'll make arrangements. Simply email me at staciesmith19@hotmail.com with "Donations" in the subject line.

2. If you don't live in the area, but would like to help out I'll happily be the personal shopper if you want to send some money. The boys and I did this at the end of last year's donation drive. It was SOOOOOO much fun. Again, email me at staciesmith19@hotmail.com with "Donations" in the subject line and we can talk about more details.

Deadline
While the CCBD will always take your donations and I will always gladly be the courier of your donations to them, I am going to set a deadline for this particular drive. I figure it will give you all a bit more motivation to do it NOW instead of later. :)

So, I will accept donations for this particular drive until Monday, November 14th.

Join the fun. Make it a group effort. Try to get your church, sports, cub scouts, bunco groups involved. Let's make a difference together!

Much love,

Take Courage

2011-10-19T21:49:00.002-05:00

I'm in the middle of a Beth Moore Bible study right now called Living Beyond Yourself: Exploring the fruit of the spirit. If you haven't considered doing this one, you most certainly should. I love it!

This past week our homework focused on peace. Many stories were reviewed about times in Christ's life when he exuded peace, despite the circumstances. One such story was when the disciples were out on the lake and a huge storm came. Jesus walked on the water to help them. They were terrified when they first saw Him and believed He may have been a ghost.

Mathew 14:27
But Jesus spoke to them at once. "Don't be afraid," he said. "Take courage. I am here!"

Notice a key part of that verse - Take courage. Some versions word it differently, but I love the way it is worded in my New Living Translation. Take courage.

Not have courage. Take courage.

And then it struck me. We take courage because it's His to give, not ours to have. Do you get it?

So many times people have said to us, "I just don't know how you all did it! I can't imagine going through cancer with my child!!" I usually respond by telling them that we didn't do it. God did it. It's the only way to explain it. Left to my own devices I would have crumbled. Over and over and over. But there was Jesus in the midst of our crisis and heartache saying, "Take courage. I am here!"

But should we have to go through crisis and heartache to take Jesus up on His offer to not be afraid of life's troubles? He is there all of the time. And He's able and willing to give us peace, joy and courage. Even while the storm is still raging. We just have to be willing to take it from Him instead of trying to find it on our own.

Beth Moore defined peace nicely in the Bible study the other day. "Peace means the absence of fear and turmoil, not the absence of pain and grief." And that reminds me of two other verses from the Bible.

John 16:33
"I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, becuase I have overcome the world."

Philippians 4:6-7
Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

My prayer is that what I have learned along the journey will never be wasted. These thoughts have resonated so strongly with me this week that I felt I must share them here with you. I think we all need to hear these words, but I pray that it reaches those that need to hear it most right now.

Much love,

Demystifying Homeschool

2011-10-14T00:10:00.002-05:00

So most of you probably know by now that I am homeschooling Gavin (full-time) and Garrett (part-time) this year. Garrett attends a preschool 2 days a week, but homeschools with us on the other 3 days. It's a nice combo for him. I have had so many people ask how the school year is going for us thus far. So I thought I'd do a little update.

In case you didn't know that we were homeschooling, you can click HERE to read the post that described the decision process. Now that we've been doing this for awhile, I can attest without a shadow of a doubt that this was the best thing for our family this year. Has it been smooth sailing each and every day? Nope! But, that's life, right? Honestly, Gavin tried to give me a run for my money there for awhile with the same tenacity that he attacked cancer. And while it started to test my sanity, I stayed strong and the fight subsided. And it's been so much nicer ever since. :)

I think this has been the best "quality of life" our family has experienced in a very long time. Sure, we are still running here and there for preschool and lots of therapy. But, our life is so much simpler through homeschool. If I weren't homeschooling, I would be either yanking Gavin out of school for therapy constantly or he'd have to do it after school. And he would be exhausted because he still fatigues faster than most kids his age. And he'd be cranky, especially when he discovered that after therapy we'd get to go home and do more homework. Yuck! With homeschool, when schoolwork is done - it's done! There's nothing more to do later that afternoon and in the evening. So, he and Garrett get more play time. That in itself is a glorious thing.

Garrett has benefitted greatly by having a big brother homeschool. He wants to do just about everything Gavin does, so he has his own kindergarten books as well. For the record, I have never pushed him to do any of it. He enjoys it and asked me to buy him his very own books. So, he's reading surprisingly well for his age. And his math is definitely more ahead of the curve for his age. I say this not to boast. This sort of thing is fairly common among homeschooling families. The younger ones are more exposed to academics at an earlier age and want to do it all as well. Learning is fun for them.

Many people have asked for details on how we homeschool. And they're usually surprised when I detail our plan because it's not really rocket science. I think so many people envision the homeschooling community to be making up school as we go and that's simply not the case. I'll try to demystify it all for those of you who care to know more.

While there are some out there that "unschool" and wouldn't purchase a formal curriculum, most of us purchase curriculum. Either an entire set that includes each subject or different items for each subject. And to say there are choices out there in the world of homeschooling curriculum is an understatement. A friend and I went to the Homeschool Book Fair in Arlington last May. It's HUGE!!! And the stuff out there is good quality. What I loved was researching ahead of time what each one was like to try to figure out if it would be a good fit for Gavin or not. And then getting my hands on the books to look through them to know for sure. Another perk to homeschooling. You get to pick the books you use. Books chosen based on your child's learning style. Books that get the job done and can still be quite enjoyable. (At least here in Texas. Not all states enjoy the freedoms we do here in the Lone Star State!)

My next step in homeschooling was determining what our days would look like. We're a little unusual in the fact that we are working around about 9 therapy appointments a week. I had always heard that homeschooling was so much more efficient than traditional schooling. So true. And we're not rushing through a thing. It's just that a ratio of 1:1 or 2:1 just doesn't take as long to get done. And if we need to eat lunch or go to the bathroom, there are absolutely no lines to be formed. ;) Another perk to homeschooling is the ease at which I can include Gavin's therapy goals right into his schoolwork. So much more efficient than last year when I was trying to squeeze in his therapy home programs (along with kindergarten homework) after school. Love it!

I am a planner, so I have written lesson plans for each and every day of the week. I created a form in Microsoft Word that is front and back. It has a column for Garrett and one for Gavin. The subjects covered include the following:

Memory verse (We learn a new Bible verse each week.)
Bible (We read 2-3 Bible stories from our favorite children's Bibles each day.)
Everyday Activities (calendar, weather, months of the year, days of the week, address, phone number, upcoming events, pledge of allegiance, pledge to the Bible, story time, puzzles, etc)
Math (lesson details from our curriculum - Horizons, memorization activities like math facts or counting by 5's, math games or activities that would supplement learning or reviewing of topics we've been covering)
Phonics (lesson details from our currciulum - Horizons, spelling - sounding out consonant-vowel-consonant or consonant-vowel-consonant-consonant words dictated to them, phonics games that would supplement learning current concepts, computer-based phonics games, rhyming)
Reading (at least 30 sight words per day, at least 3 readers read aloud that are at current reading level)
Writing (copying our weekly memory verse, specific work on the formation of letters and numbers, about to start a curriculum that focuses more on the writing process in a fun and creative way - The Write Shop, and our Horizons phonics has quite a bit of writing built into it)
Science (pretty variable because I haven't made this a huge focus for this year -- books and videos from the library on a wide variety of topics, science experiments, field trips, etc. I use district and national standards as a guide.)
Social Studies (also pretty variable because Gavin didn't have trouble with this area last year in kindergarten and we're technically repeating kindergarten so that Gavin can finish what he didn't get through, although I may start a formal curriculum that is more for 1st grade pretty soon -- currently, more books and videos on a variety of topics, lapbooks from www.enchantedlearning.com)
Etiquette (Nothing formal. I pick areas that we need to cover and go from there. I did buy a huge tablet to write the "rules" for each area on. I figure it helps with reading as well.)
Occupational therapy
Speech Therapy
Physical Therapy
Vision Therapy

I use my daily lesson plan as a checklist. And I also write each subject area out on a dry erase board so the boys can see how much we have left. As soon as we finish an activity listed on the board, the boys take turns erasing them. They like that a lot.

So, that's our homeschool in a nutshell. I happen to think it's a load of fun. And now that we're over the stage where Gavin tried to get out of doing schoolwork, I have absolutely treasured the time I get to spend with my boys. I have always heard homeschooling moms say they thought the biggest benefit to homeschooling was the relationships they built with their children that they just didn't think would have been as strong if their kids would have been away at school all day. And now I get it. While Gavin and I spent just about every second together when he was receiving treatment for cancer, it was hardly the quality time I had always dreamed of having with him. He was too sick to really enjoy much of anything. This year seems to be making up for that. And I feel so blessed to get to be a part of it.

Because it's the age-old question for homeschoolers, I'll address it. What about socialization? Well, let me say that at least in our neck of the woods, most homeschoolers are far from unsocialized. There is a wealth of activities for homeschoolers, field trips specifically for homeschoolers, park play days, and classes (like karate and gymnastics) that are just for homeschoolers. Just to name a few! Our kids are not holed up in our house 24/7. And while maybe years ago homeschooling was seen as a way to keep kids out of the ways of the wild, wild world, it's simply not the case these days. In our area, homeschoolers and traditionally schooled kids socialize together regularly. Homeschooling is becoming increasingly popular. Most everyone I tell that we're homeschooling knows at least 1 or 2 families that also homeschool. For example, in an organization I belong to here locally for homeschoolers, I think there are more than 250 families that belong. And it's not the only organization in our county. There are a lot of kids homeschooling. And they're out and about a lot. Maybe even more than traditionally schooled kids. Because they're getting their academic work done in a more efficient manner, they have more time to socialize. How's that for irony?

Many have asked what we'll do next year. Garrett will officially be old enough for kindergarten. Will I send him on to kindergarten in our school district here and homeschool Gavin again? Will I send them both? Or will I homeschool them both? Honestly, it's too early to say. Jeff and I are both pretty set on the one-year-at-a-time plan. We consulted with God on plans for this year. And He made it pretty clear this was the appropriate route. We'll consult with Him again for next year and keep you posted. :)

I'd love to hear your comments on homeschool and whether you have any suggestions for making our homeschool even better.

Much love,

The Smithville Scoop - Sports Edition

2011-10-07T22:31:00.001-05:00

Guess who is playing

Tee ball this fall?

Garrett

And Gavin!!

(Photo credits - David Elliott)

Our local sports association was kind enough to allow Gavin to play down to Garrett's age group this fall. This gave Gavin his first official start into organized sports at a level that is appropriate for his current skills. He loves it. And the boys love playing together. And this momma loves the fact that I have two boys, but only one practice and one game per week. SCORE!

Jeff is the head coach this season. I might be a tad bit biased, but I think he's doing a mighty fine job with it as well. ;) It has been so much fun to watch the boys play together.

I hope you all are doing well. As always, no news is good news in Smithville. Besides tee ball, we've been hitting school and therapy pretty hard this fall. I'll try to do a more detailed post sooner rather than later.

Happy fall, ya'll!!

Much love,

Have You Heard About The Gold?

2011-09-26T23:08:00.000-05:00

A gold ribbon. Do you know what it symbolizes? How about the pink ribbon? Do you know that one?

More than likely you know that the pink ribbon is for breast cancer awareness. It seems to be everywhere. The gold ribbon, however, is not as well known. It's for childhood cancer awareness. Cancer that needs many, many more answers than are currently had.

We shouldn't be quick to judge the pink ribbon for getting more attention than the gold though. The people behind that pink ribbon have worked tirelessly to make certain that we knew exactly what the pink symbolized. And while breast cancer doesn't have an easy cure yet, they are getting so much closer and the survival rate has increased substantially. The pink ribbon campaigns have increased awareness, which has in turn increased funding for additional research. And that's a very good thing.

I can't help but think that if more of us were doing our part to make the gold ribbon more well known, perhaps childhood cancer would be getting more money to fund the desperately needed research for a cure. That perhaps some of my friends made along the journey with Gavin would still have their children.

The statistics are sad when you look at all of the funding details for childhood cancer research. I won't repost it all again this year. Just know that the kids get about 3% of all funding for cancer research. And that tiny 3% has to get divided up somehow among all of the different types of childhood cancer. There are 12 main types of childhood cancer and a whole slew of different subtypes under those 12 main types. The most common diagnoses get the "most" (of the little) funding. So, Gavin's type (AT/RT) gets next to nothing. And honestly, that explains why the prognosis is still so dismal. Gavin was given a 20-30% chance to live in March of 2008. I wish I could say that statistic has improved greatly since then. It has not.

While there are a number of childhood cancer funds you can donate to, I feel led to list only one. The Cure AT/RT Now Fund. Most of the others divide their money among all of those main 12 types of childhood cancer. So, AT/RT rarely sees a dime of it. The Cure AT/RT Now Fund is led by the lead oncologist that came up with the treatment protocol that Gavin was on, Dr. Susan Chi (in Boston at the Dana-Farber Cancer Institute). She was one of a number of pediatric neuro-oncologists that spoke to us in the beginning when we were willing to move anywhere in the world if necessary in order to give Gavin the best shot at survival. She was fantastic. And our oncologist here in Dallas told me not all that long ago that she would still ask how Gavin was doing when they ran into each other at their neuro-oncology conferences. She is leading the fight against AT/RT. A fight that not many are taking up right now.

So, in honor of Childhood Cancer Awareness Month, consider donating to this worthy fund. In honor of Gavin and the few others that are still standing after the diagnosis of AT/RT. And in memory of those children who are not.

"Cure AT/RT Now" Fund
c/o Dr. Susan Chi
Pediatric Neuro-Oncology
Dana-Farber Cancer Institute
44 Binney Street SW331
Boston, MA 02118

Much love,

Here We Grow

2011-09-15T22:01:00.000-05:00

Whew! It's been too long since I last posted. I'm sorry. A couple of friends have gotten onto me lately for being such a stranger on here. I've honestly had a number of different posts swirling around in my head and one that was started but not yet completed. I'd use the excuse that I've been busy, but I think we all are in one form or another.

Since my last post, we visited the Oregon Coast, where Jeff's father lives. It's such a beautiful place and Jeff's dad is always a pleasure to spend time with. (Like father, like son - right?) Upon our return, Garrett began preschool and Gavin increased his homeschooling to 5 days a week (instead of the 2 or 3 we did over the summer). I plan to post more in detail about both Oregon and homeschooling very soon.

For tonight, I thought I'd update about this week's happenings. On Tuesday, Gavin began growth hormone shots. Many of you may recall the difficulty we had in starting the shots. We knew that growth hormones do a pretty good job at making you grow in height. We also knew that if there happened to be any cancer cells lurking around in his body, the hormones could do a "fine" job at making them grow/spread as well. And that scared us. A lot.

We've come to terms with the fact that Gavin's just not growing without the hormones. We can never know for certain that there are no cancer cells in his body. I think it takes a million or more of them to show up on an MRI. However, if there are AT/RT cells taking up residency in Gavin's sweet body, I am betting they're pretty new. Those cells reproduce like madness and make their presence known in a hurry.

I am at peace with the growth hormones. And I look forward to the benefits of the therapy. Besides helping with growth, the therapy is also helpful in aiding memory, attention, stamina, and mood. Most parents who have their children like Gavin on growth hormone therapy report what a difference it makes in the whole child. They just feel better. And I really want that for Gavin.

So, the shots got started on Tuesday with a rather long education process (4 hours!) at Children's on how to mix and give the shots. It seemed a little overkill for parents like us, who have given shots before, hooked up TPN/lipids (IV nutrition) each night for 15 months, and accessed a port (think large-needled IV in the chest) before. But we passed the course and Gavin was very brave for his shot upon our graduation. He flinched as the needle went in and got a pretty sad look on his face after the fact, but recovered nicely.

The shots are given before bed 6 nights a week, so we've done two more here at home. We have seen a few tears before the shot was given, but he was over it by the time the shot was completed. A total trooper. And he keeps talking about how he just can't wait to "be all grown up!" I'm trying to remind him that the doctor says it might take 4-6 (or even 9-12) months to see any growth. And even then, he won't be all grown up. Nevertheless, it's cute that he's all pumped up about his "growing medicine."

Thank you once more for checking in on our family. We are so blessed to be at this point. Many people have said to me that they just can't imagine having to give their child a shot 6 nights of the week from now on. I have a bit of a different perspective. If somone would have told me in March of 2008 that we'd have Gavin (alive!) in 2011, but he'd need nightly shots to help him grow, I would have jumped up and down with joy. For so, so many parents of children with cancer, they never get to this stage of the game. September is Childhood Cancer Awareness Month and we are very much aware of the disease and just so blessed to be where we are today.

Shots and all.

Much love,

Pray for Two AT/RT Children

2011-08-19T08:55:00.000-05:00

My heart is particularly heavy today for two girls that have been battling AT/RT (the same tumor type that Gavin had). Please lift these two girls up in prayer as things are critical for them both right now. And by lifting them up, I really mean please storm Heaven for a miracle for both girls. I could seriously make a laundry list of AT/RT children that need your prayers. See the "pray for these" list on the left side of my blog. I have labeled AT/RT next to those kids. AT/RT is just such a dreaded tumor type. It's rough to make it through the first time around, especially if you are too young for radiation, as so many AT/RT kids are. It's next to impossible to make it with a relapse. Meet Adora and Anna.

Adora Ellenburg recently completed her treatment for AT/RT. She had one good scan post treatment. Five or six weeks later she began vomiting. She was eventually scanned once more. AT/RT was back like wildfire. And it had spread to her spine. Doctors have said her cancer is inoperable now. They have no treatments they feel will help. They suggest Adora go home and "be comfortable." Go to www.caringbridge.org/visit/adoraellenburg to read more about her.

Anna Rose was just diagnosed last December, I believe. She's between chemo cycles now and critically ill because of infections her body has no immune system to fight off. She is in the ICU. Things look very scary for her right now. Go to www.caringbridge.org/visit/weloveannarose to read more about her.

I know neither of these situations is beyond God's healing capabilities. Please join me in sending prayers up to Jesus on their behalf. You all have always been so good to lift Gavin up in prayer. I believe his continued life is a blessing because of it. Thank you.

Much love,

Jamie The Giraffe

2011-08-08T22:35:00.000-05:00

James Camden Sikes was a fellow AT/RT warrior that passed away on July 16th. I wrote of him here on the blog and have just been heartbroken for his sweet parents. If you haven't taken a look at their blog, you need to do so. Go to http://www.jamescamdensikes.blogspot.com/. Both of his parents write quite well so I often smile through the tears when I read their entries.

James was only 8 months old when he passed away, but already he had a passion for giraffes. And his parents learned that a baby giraffe was born in the Dallas Zoo just a few days after Kara and Mathew buried James. The giraffe is a girl and the zoo is having a contest to come up with a name for her. Kara and Mathew had a very sweet idea. Let's flood the zoo with the entry "Jamie the Giraffe." (Jamie is pretty close to James and Jamsie, two names their son went by.)

Their blog has the form right on it. You can click it and print it right off. But you have do it soon. The contest closes on August 21st. You do not have to live in Dallas (or even the United States) to enter. Won't you join me!?!?!

Go to http://www.jamescamdensikes.blogspot.com/ and print out your entry. I can't wait to go to the zoo and introduce my boys to "Jamie the Giraffe," how about you?

Much love,

My Favorite Things - Healthy Food Edition (Part 2)

2011-08-06T23:40:00.001-05:00

Quite awhile back, I did a post on the healthy foods that our family loves. I had a number of people say how helpful they thought that was. And since I know so many of you are starting to think about packing lunches for the upcoming school year, it seemed like an appropriate time to list some more of our favorites.

Before cancer, we were considered a well-balanced family when it came to food. We hit all the food groups for most meals we planned as a family. A dietician that analyzed why Garrett wasn't gaining weight even said she thought we were in the "upper echelon" for diets. (I have to laugh at that one now, but I was proud back then!) Obviously, our view on food has changed considerably since that time. More research and a few consultations with a dietician that pretty much specializes in kids with pediatric cancer made us realize some changes were necessary. And while a number of people probably think we're a little over the top, I feel the whole family has benefitted from it. It's just healthier eating.

In a nutshell, we try to eat organic when research has done a decent enough job telling us that organic is important for a particular food. We eat at home more than out. And we avoid certain fast food establishments because, let's face it, we just shouldn't be eating there. None of us should.

Before we made the changes, I used to walk by the "healthy section" of our grocery store and wonder how horrible all of those foods tasted. I figured if they were healthy, they probably tasted awful. I laugh at that notion now because just about everything I've branched out on tasted WAY better than the unhealthy version I loved before. It's wonderful irony.

Disclaimer: We still live a little. Some of you are likely healthier than we are and will scoff at what I consider good enough to feed to the family. I apologize and hope you'll take a moment to list out some of your favorites in the comments section. I'm always on the hunt for something new. And some of you may try the things I list here and think they're awful. I apologize to you as well and hope you won't give up on the good stuff entirely.

So, without further ado, a few more of my favorites:

Late July chips (I'm in love with Dude Ranch right now)
Annie's Organic Whole Wheat Shells & White Cheddar Macaroni & Cheese
Cascadian Farm Chocolate O's (think Cheerios turned chocolate)
Cascadian Farm Clifford Crunch (another cereal the boys love)
Organicville Original BBQ Sauce
Envirokidz Organic Crispy Rice Bars (Peanut Choco Drizzle)
Clif All Natural Crunch Granola Bars (Peanut Butter)
Country Choice Organic Snackling Vanilla Wafers
Annie's Bunny Grahams (Chocolate Chip, Cinnamon, or Honey)
Pirate's Booty (Aged White Cheddar) - think cheese puffs, only better!!
Ian's Fish Sticks
Stoneyfield Organic Yogurt (French Vanilla)
Horizon Organic String Cheese (Mozzarella) - I think I like all of their dairy. We get their milk as well.
RW Knudson Juices
Earth Balance Natural Peanut Butter (creamy, no stir, don't have to refrigerate)
Cascadian Farm Organic Concord Grape Jelly
Muir Glen Spaghetti Sauce
Muir Glen Soups
Vans Waffles
Organic Maple Syrup (Just one ingredient! They should all be so simple!)
Organic Valley Pasture Butter
Eggland's Best Organic Cage-Free Eggs

And I know there are so many others I could add to the list. But, it's late and that's all I'm able to come up with tonight. So, I hope it helps someone out there in Bloggyland. I'd love to hear from you if you try some of it.

As for meats, we try to do organic with as much "grass-fed" as we can. No antibiotics, thank you! ;) I'll save the produce organic vs. non-organic list for another night.

We do our grocery shopping mostly at Kroger and Sprout's, although Wal-Mart is starting to carry more and more of what we like. And we have a Whole Foods nearby these days as well for certain items we can't find elsewhere. Yes, all of these things cost more then the stuff we bought in its place previously. But as a wise friend of mine (Wende Romo) has said a number of times to me...

Health over wealth!!

So true. So very, very true.

Much love,

Summer Update With Pics

2011-07-31T21:47:00.000-05:00

Hi friends. Just thought I'd pop in for a bit for an update of sorts. We're blessed in the fact that there isn't anything too earth shattering to report about Gavin's health. So blessed. ;)

I had mentioned that he had growth hormone testing completed a few weeks back. We learned last week that he did, in fact, fail the test. No surprise. That means his body isn't producing growth hormones. And that's key in making you grow. The endocrinologist figured he'd fail it based on the fact that he's not grown in a VERY long time and some other labs that have been done. We're awaiting insurance approval to get the shots started.

In other medical news for Gavin, he had a pop-in visit to the ER at Children's over the weekend. Nothing big. He tripped at the bottom of the stairs and cut his forehead open. It was a superficial wound, but looked worse initially than it actually was. The last thing we want is yet another large scar on Gavin's sweet head, so we decided to have Children's check it out to see if stitches were necessary. I was actually hanging out in Frisco with my long-time best friend, Julie, in the middle of a girls weekend when I got a text with a picture of Gavin's forehead. So, we met Jeff and Gavin over at the ER. Julie and I had to laugh at the situation. We beat Jeff and Gavin there, but checked him in. Julie and I sat in the waiting room just cool as cucumbers. She was writing our grocery list for our next stop, Kroger, so we could get stuff for queso and brownies. (Fun snacks for a girls weekend, agreed?) I was checking the Redbox app on my phone for possible rentals. And my son is on his way in for possible stitches.

Pre-cancer, I would have probably been a bit more nervous, don't you think? ;) But, we're well-versed in the ER drill by now. Gavin is as well. In fact, upon arrival he gave his wrist over for the obligitory wristband without a blink. He informed the lady putting the wristband on that he had a boo-boo on his forehead and needed stitches. Matter of fact. No big deal. When the triage nurse said she was going to check his blood pressure, Gavin took a seat and stuck his arm out. And as soon as he saw the pulse oximeter, he stuck out a finger. Yeah, he knows the drill.

The ER doctor felt Gavin could get by with only one stitch or just some glue. We chose the glue because it had a better shot at less scarring. Gavin was happy with that call. No pokes. Jeff and Gavin stuck around for the actual glueing. Julie and I grabbed an Icee from the nourishment room and hit the road. On with the girls weekend!!!

We've been enjoying more relaxation recently. While I have been doing some homeschooling this summer, it's been light. Only hitting the core subjects. And only doing 2 or 3 days a week. We'll increase to full throttle soon enough. Garrett loves doing school stuff with us as well. In fact, I think he might prefer to stay home with us full-time in the fall. But he will attend preschool 3 days per week. A number of people have asked if I plan to homeschool Garrett the following school year when he's due to start kindergarten. I honestly have no idea. God made it abundantly clear that He wanted this for Gavin next year. And I haven't really consulted with Him quite yet on the next year. We've got a great school district where we live. But who knows, we may fall in love with homeschooling and decide it feels right for all of us. Time will tell.

I'll leave you with a few pics of a summer baseball game.

Much love,

Spread The News

2011-07-25T23:29:00.000-05:00

The pediatrician Gavin saw at the time of his diagnosis felt that Gavin had developed reflux. And he was treating his symptoms as such. Fortunately for Gavin, we took him to the emergency room after less than 4 days and 2 office visits of treatment for reflux. But many children I have met have not received a proper diagnosis so quickly. They stayed the course with the pediatrician and ended up in worse shape than they should have been in at the time of diagnosis. Unfortunately, it's a familiar story to the neurosurgeons at Children's Medical Center of Dallas. But, it shouldn't be. And the neurosurgeons are trying to do something to help change things.

Please help me spread the word to physicians, physician assistants, nurse practicioners, nurses, and other allied health professionals about a continuing education course that the neurosurgeons themselves will be presenting.

What: The Second Annual Primer in Pediatric Neurosurgery
When: November 4-5, 2011
Where: Children's Medical Center at Legacy (the Plano Campus of CMCD)
Cost: Varies according to your discipline. (I've looked at it though. Dirt cheap for a two-day course!)

From the course description: "The two-day conference will highlight pertinent clinical information regarding pediatric neurosurgery including: common neurosurgical diagnoses, their presentation, workup, treatment and follow up. The conference will include a lecture on epilepsy as it pertains to the primary care physician's office and emergency room."

For more information or to register: www.childrens.com/CME

Please spread the word. Such a course could have a dramatic effect on how quickly a child in need of neurosurgery is diagnosed. And in many cases, every day counts!

Much love,

The Latest In Smithville

2011-07-17T23:56:00.001-05:00

We have tried to dodge growth hormone shots for Gavin for quite some time now. It just made us sick to think about it. First of all, the idea of making Gavin take a shot 6 nights a week wasn't so appealing. But I know he would soon grow accustomed to it and do fine. More than the physical act was the fear that if any cancer cells were floating around, adding growth hormone to the mix could serve as a fertilizer. And I think I've made it clear that AT/RT needs no fertilization. However, two things remain. 1) Most kids that have been through craniospinal radiation end up on growth hormones because of damage done to the pituitary gland. 2) Gavin's not growing on his own.

Last week we moved one step closer to starting growth hormones. Gavin completed a growth hormone stimulation test. Insurance required it. Other labs that pointed directly to growth failure and the fact that Gavin's just not growing weren't sufficient for them. In their defense, it does cost around $35,000 per year for growth hormone shots. I can see where they don't want to dole them out to just anyone. However, the test seemed a bit redundant for a kid with Gavin's history. I'm just sayin'.

The test was completed in the Children's Legacy CCBD (cancer clinic). Our old stomping grounds, so to speak. It was done back in the infusion area, where Gavin received lots of outpatient chemo as well as blood and platelet transfusions back in the day. We know the nurses there all too well and love them like family. While I wish Gavin was growing on his own, I must say it was refreshing to be in an infusion room for something other than chemo or a transfusion.

One potential side effect to the test is nausea.  The nurses helped me make certain that Gavin had Zofran ordered because of his significant history with nausea while he was on treatment. However, even with our preventative efforts, Gavin became nauseated. It was a bit all to familiar to see him suddenly seem sick. And he began to cry as he said, "Mommy, the medicine didn't work. I feel icky!" More Zofran was given and he seemed all better. The test ended and we headed home. But Gavin became nauseated once more, hours after when we were told the nausea should have gone away. (Leave it to Gavin on that one! Poor guy!) He did get sick, but additional Zofran (from a brand new bottle I still had that hadn't yet expired) stopped the nausea. I guess that is one perk to having a near pharmacy in your house. Prepared like a cub scout, I tell you!

We don't know the results of the growth hormone stimulation test yet. The doctor suspected we'd find complete failure, which means Gavin's body is not producing any growth hormones. For now we wait not so much for the test results as for insurance to approve the shots.

I explained on the way to the clinic last week in very simple terms what we were testing for. Garrett wondered if he would need growth hormones as well. So, I had to explain in simple terms once more why Gavin needed the hormones and Garrett did not. After my explanation, Gavin sighed and said, "I'm not simple." So we talked about that a bit in order to make it seem like less of a bad thing.

"I'm not simple." It sounded so very much like what we used to frequently hear from the specialists when they were scratching their heads about how to make Gavin feel better while on treatment. "Gavin is a complicated case." I'm just so happy that these days he's not so complicated. Sure, he's complicated compared to the average 6 year old. But compared to a brain tumor survivor, he's not so complicated. The fact that he's alive after AT/RT is amazing. I should never allow myself to forget that.  And the side effects from treatment that we see now aren't really all that shocking. They were on the 12-page consent form we signed off on before treatment started. While we prayed for none of them, the ones that have manifested aren't that complicated given his history. And so I am encouraged.

Gavin went on to ask if we would always go to the hospital for the medicine that would help him grow. I told him that we would take it at home. He seemed quite satisfied with that response. How bummed he will be when he learns that the "at home" version also means regular shots. But he is here with us.  We have options to help him grow. And he's a brave little boy. So we'll move over that hump much like the others. And he will be just fine.

Last week we also took a trip down to Houston to have Gavin's annual appointment with his neuro-opthalmologist (very specialized eye doctor) at Texas Children's Hospital. We feel she's worth the drive, so we keep her on board. The boys and I also got to spend the night with my pal Joy and her family, which was a treat! The kids had such a good time. And I loved getting to catch up with Joy in her new surroundings.

Gavin's glasses prescription remains practically unchanged, which is better than worsening, right? However, I did learn that Gavin has cataracts. Yes, you read it right. Cataracts. It threw me for a loop as well. She said it's just in one eye and it is quite mild at this point. It is possible that he's had them all along but is just now cooperating well enough in her exams to see them. But, it's most likely a result of the cancer treatment. At this point, nothing needs to be done for the cataracts. We'll see how they look at the next appointment. Last year's appointment revealed that Gavin has some red-green color blindness. That's genetic and completely unrelated to his cancer treatment. This year we learn about cataracts. Odd. Hopefully next year's appointment will reveal nothing new. ;)

Obviously, we are filled with joy that Gavin's last MRI was clear. Thank you again to those of you that follow this blog and lift up Gavin in protective prayer. I received many comments around MRI time from those of you that feel you don't really "know" me, but wanted to let me know you were praying. Please know that I am grateful for all that read this blog. It's public so by no means only meant for those that I know outside of Bloggyland. And I love to hear from all of you.

Oh and one more update. I donated platelets again last week. Unlike last time, I didn't shed a single tear this time around. It was more of the warm fuzzies that I had hoped for the first time.  I am scheduled to donate again very soon. I think it's going to become something I do regularly. Tell me, have you donated any blood products lately? If not, you should. Kids like Gavin depend on your generosity to survive while on cancer treatment. Seriously. Go donate!!

Much love,

Update on Sweet James

2011-07-16T18:23:00.001-05:00

Thank you to those of that lifted James Sikes up in prayer today. He has passed away at the tender age of 8 months. He valiantly fought AT/RT for a little more than 3 weeks.

My good friend Joy and I were talking the other night and once again I marveled at her perspective. She said she wondered what people are greeted with in heaven. Perhaps when a small child arrives others greet them with enthusiasm, saying something to the effect of, "Wow!! You only had to stay down there for 8 months!! I was there for 84 years!! Way to go!!!"

It lightens my heart to think this way about the short life of children like James, who in our minds seem to have left this world much, much too soon.

Please keep the Sikes family in your prayers. http://www.jamescamdensikes.blogspot.com/

Much love,

Pray for James Sikes

2011-07-16T08:08:00.001-05:00

I planned to write a post updating with the latest in Smithville. But, my heart has been so heavy for a sweet little boy named James Camden Sikes that I had to share him with you instead.

James is only 8 months old and was diagnosed with a brain tumor just about 3 weeks ago down at Children's in Dallas. He had the same neurosurgeon as Gavin and initial surgery was successful, removing all but I believe less then 5% of the tumor. The pathology report revealed that James had AT/RT, the same type of tumor as Gavin.

James was trying to heal from surgery in order to begin chemotherapy. However, instead of improving James was declining rapidly. Increased vomiting. Increased seizures. Irratic heart rate. And then some. His parents fought with the medical staff to investigate further as to what exactly was going on. An MRI was repeated and revealed the unthinkable. His AT/RT had come back like wildfire. Not only had the tumor regrown within the original tumor bed, it had also spread all over the rest of his brain. The oncologists say they have never seen such an aggressive tumor.

James went home on hospice the other day. His family had an early birthday party for him shortly thereafter. The future is grim, but still they have hope. They believe a miracle is still possible. And so do I. I have known of at least 2 other AT/RT kiddos that went home on hospice but kept improving. Later MRI scans revealed that their tumors were gone. No doctors could explain it. Clearly, God's still in the miracle business.

While we don't know what God's plan is for James, I feel it is imperative that we storm heaven for James. Won't you please join me in praying for James? If his cancer went away at this point, no one could deny God's hand in his healing. And if it's not God's plan for complete healing for James, pray for the peace of family and friends. My heart just aches for this sweet family.

To read more about James, please visit the blog that his parents update regularly. Go to http://www.jamescamdensikes.blogspot.com/. Your heart will melt as soon as you see his picture.

Much love,

New Music

2011-07-10T23:50:00.001-05:00

Update: It's been awhile since I sat and listened at length to the blog music. Has it been playing occasional ads for awhile now? I had no clue!!

---------------------

Someone at church today said that he liked the music on the blog. It reminded me that I had been meaning to add more songs to it. I am planning to leave the songs in order for a few more days and then try to shuffle them from my end of things, so it doesn't alway start with the same song. Mix it up a bit, right?

For now, the newest song is #36 on my playlist. But in case you read this post after the song shuffling, I'll list out the new songs I'm adding. I love them all and figure a few of you might as well.

Walk On Water - Britt Nicole
Blessings - Laura Story
Time In Between - Francesca Battistelli
Our God Is Greater - Chris Tomlin
Whatever You're Doing - Sanctus Real
Glorious Day - Casting Crowns
You Are More - Tenth Avenue North
Held - Natalie Grant

What are some other songs you think might be good for my playlist? I'm always looking for new favorites.

Much love,

The Longer Version Of Our Good News

2011-07-08T00:13:00.004-05:00

So, if you haven't already seen my previous post, I'll start by saying Gavin's MRI was clear. Praising God for that!! We won't know this side of Heaven how many different times you all changed the course for Gavin by storming Heaven with prayers on his behalf. But something tells me it's happened a few different times. And you all will never know how grateful we are for your prayers, love, and kind words during times like these. My phone was BUZZING today. And it sure helped make a very long day a wee bit shorter.

So, here's the scoop...

Gavin's MRI was scheduled to start at 3:20, but was delayed an hour. At first they said "at least an hour," but it ended up just being the hour. Gavin was a complete trooper about it, especially considering he hadn't eaten since 9:00 this morning. He was more concerned about which flavor mask he got to pick out for the start of his anesthesia. (He says bubble gum smells the best, by the way!) They give him gas through the mask until he falls asleep, while I am still there with him. Then they start an IV and give him the good stuff. (Propofol -- the stuff Michael Jackson preferred as well. A little too much. And clearly unsupervised. But that's another post. And not one from me.)

Gavin's MRI "nap" started at 4:20. His scan usually takes an hour and a half to get both the brain and spine done. I had already signed consent with Gavin's oncologist for a lumbar puncture (LP) that he would come and do as soon as the MRI had been completed (but before Gavin's anesthesia was done). The LP goes super fast, so I anticipated hearing from the oncologist around 6:15 or sooner to let me know he was all done.

However, about 6:15 a nurse comes out into the hallway that we were sitting in. She explained that the radiologist needed some more pictures and that the MRI would last another 40 minutes. Jeff asked, "So, why do they need more pictures? Did they see something?" The nurse looked at us with a look of pity and nodded her head.

My heart sank and Jeff and I went straight into freak out mode. Quiet freak out mode, that is. Garrett was with us, so we had to play it somewhat cool. But as time wore on, our sighs became more audible and the minutes seemed to pass by at an even slower rate.

At the end of the 40 minute period, another nurse came and found us. She said they were done with the MRI and that the oncologist was doing the LP. She wanted us to go on up to the 2nd floor, where recovery was. She put us in a consultation room to wait for Gavin's doctor. Silent freak out mode increased again at least 100 fold. The consultation room?!?! Everyone knows that's bad news bears. How can this be?!?!

About 30 minutes later Gavin's doctor came walking down the hall, escorting Gavin (who was still completely knocked out on a stretcher) and a couple of nurses. He stopped at our doorway and Gavin continued on down the hall. The nurses said something about how long it should be for Gavin to wake up. I didn't even register what they said. I was focused only on Gavin's doctor and bracing myself for just how bad this really was.

But, it wasn't bad. He said, "I have good news!" That's how he starts all "good MRI results" conversations. He said both the brain and the spine looked clear. Jeff and I were stunned (and obviously elated). Really!?! We told him what that nurse had said to us. Obviously, she shouldn't have answered Jeff's question. And besides that, he was the one that told the radiologist to take more pictures. Just to be sure that there was nothing to be found on the spine.

He was also holding the two vials of Gavin's cerebrospinal fluid (CSF) from the LP in his hand. (I must say, it's a little odd to see your child's CSF in vials like that, even after all we've been through.) He said he figures the CSF samples will come back clean as well, but we'll have results in a day or two.

And just like that, we moved on to talk about how Gavin's MRI schedule will move from every 3 months to every 6 months. So we won't plan to scan again until January. We talked about growth hormone shots and where we are in that process. (Should be getting started with that within a month or so) And then we parted ways. I'm pretty sure I aged at least 10 years between the "We need more pictures" conversation and the "I have good news" conversation. But I feel like we have a new lease on life. Blessed beyond measure. Jeff and I are amazed at how differently that conversation could have been. Life changing, to say the least.

It took Gavin longer than normal to come back to reality after today's anesthesia. Probably because he was under for longer than normal. He didn't wake up until 7:45. The recovery nurse and I joked about how he'd probably be awake until 3 in the morning after such a good nap. But thankfully, he went straight to sleep. (That is, after a crazy late-but-oh-so-yummy celebratory dinner at Outback on the way home!)
Thank you all so much for rallying on Gavin's behalf. I am always touched by the outpouring of support you all give us. We never feel alone on MRI days. You all send us love. You send us strength. And I know the Holy Spirit carries us as well.

Acts 1:8
But you will receive power when the Holy Spirit comes upon you.

Hebrews 13:5
Never will I leave you, never will I forsake you.

We are grateful for continued health for Gavin. While we'll never know the long-term plans, we know that God does. And that He wants us to hope in Him and continue going to Him in prayer.

Jeremiah 29:11-13
"For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me."

We'll never know for sure whether Gavin's last MRI contained an artifact or if he actually had new tumor growth. Either way, God made certain this MRI was clear. No questions asked.

Job 9:10
He does great things too marvelous to understand. He performs countless miracles.

Quote from Beth Moore
"Our finite minds simply cannot grasp God's infinite ways of answering prayer."

Thanks for hanging in there. I have a feeling a few of you aged more than usual today during our wait as well. And for that, I apologize.

Now go hug some kids in your life.

Much love,

Clear

2011-07-07T19:37:00.002-05:00

Just a brief update to say the MRI was clear!!! Praising God as I wait for Gavin to wake up from a long nap in radiology!! Will update in greater detail later. Thank you to those who have lifted Gavin up in prayer.

Much love,

It's Finally Here (Almost)

2011-07-07T00:05:00.001-05:00

Time is a funny thing. Some days fly. Other days creep. Yet, there are the same number of hours in each and every day. I won't lie. Around here, it has felt like we've been waiting FOREVER for July 7th's MRI to arrive.

And now it's just about here. Finally. Jeff and I are hanging out on this MRI eve. We've been waiting and waiting for tomorrow to arrive. And now that it's here I almost feel like trying to stop time. I am so hopeful that we'll receive wonderful news that his brain and spine are clean. But, I am also bracing myself for the possibility that they aren't. As if thinking it through would make receiving such news any easier. It's silly now that I think about it. But if you walk in these shoes, I have a feeling you understand what I am talking about.

We should have results to share at some point tomorrow, but it will likely be into the evening before we know anything. We didn't get the first slot of the day that we love so much considering Gavin can't eat anything for 6 hours before his MRI. However, it was difficult to get the slot we got, so I won't complain. Aloud. Too much. ;)

I'll leave you with a few verses that I want etched into my mind for tomorrow.

1 Peter 5:7
Give all your worries and cares to God, for he cares about you.

Psalm 91:1
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.

Psalm 139:10
Even there your hand will guide me, and your strength will support me.

Psalm 62:5
Let all that I am wait quietly before God, for my hope is in him.

Job 9:10
He does great things too marvelous to understand. He performs countless miracles.

John 14:27
I am leaving you with a gift - peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid.

Thank you all for keeping up with us during this time. Your prayers for Gavin's scan mean so very much to us.

Much love,

The Silence Is Broken

2011-06-29T22:01:00.001-05:00

I have been silent here in Bloggyland for longer than usual. Frankly, the words just haven't come to me. It's been one of those seasons when there just aren't words to adequately sum up what's been going on lately.

Sure, I can rattle off what activities we've enjoyed this summer. The boys have had their share of fun and I've enjoyed watching them relish their free time. But, the carefree exterior of the summer thus far has been just that. Sort of a shell. Covering the very raw emotions that brew beneath my surface. The hope that the spot on Gavin's previous MRI will not appear on next Thursday's MRI. The fear that it may. And the fear that it will have grown...like wildfire, as AT/RT does so well. The original diagnosis was terrifying.  But I know now what it's like to go through treatment and I know that there are limited treatment options for AT/RT kids the 2nd time around.  And as another cancer mom I know texted to me recently, it's almost scarier than the original diagnosis. At times I feel like I'm waiting to see if our world keeps spinning after July 7th's MRI. To think that it could be rocked once more just takes my breath away. The wait is grueling.

I recently donated platelets. For the first time since Gavin's cancer. I looked forward to the opportunity to give back in some way for all of the blood and platelet transfusions Gavin required while on treatment. I anticipated a warm fuzzy kind of feeling during my donation, knowing my platelets would help some other patient in need. So I was shocked when the process took me on a painful walk down memory lane. People lounging with bags of blood and/or platelets hanging on a IV pole next to them during their donation gave me flashbacks to the transfusion room at Children's Medical Center.

I remembered pitifully sick children (and one of my own!), desperate for a transfusion to perk them up so they could rally on toward the start of their next chemotherapy cycle.  And I relived my own fears from when Gavin received many of those early transfusions. Sure, I knew the blood products were "screened well." But watch your child receive someone else's blood that you don't know and tell me how great you feel watching it drip into their veins. It's horrifying! Cancer is bad enough. What if they survive and get goodness knows what because of a bad transfusion!?! Surely, I'm not alone in that fear process. And I will tell any new cancer parents that may happen upon this post, that fear dwindles. Or maybe you block it out. I would pray over the transfusion and just anticipate how much better Gavin would feel soon after its completion. It helped.

Needless to say, the emotions I felt during the donation process took me by surprise. The woman helping with my donation asked about a necklace I was wearing. (I won it during Gavin's treatment through a giveaway that was done for Lisa Leonard's jewelry.  It says "Lucky Mommy" on it. I had commented that I was lucky because even though Gavin was going through cancer treatment, he didn't complain. And I won. I think "blessed" is a more accurate word, but I still love this necklace. It has the cutest footprint in the middle of it!) So anyway, the woman asked me about my necklace. And I was speechless. (Rare for me!) I tried to compose myself, but couldn't. I began to cry, which I'm pretty sure made both of us uncomfortable. I apologized and tried to explain how surprisingly emotional this donation had turned out for me and why. She was very kind to me and gave me a box of tissues. I pulled my act together and tried to focus on the book I had brought with me instead of the feelings I was fighting off.

But the feelings remained and actually worsened. If you haven't donated platelets before, they hook you up to an apherisis machine. It pulls out your blood, separates the platelets, and puts the red blood cells back into you. (I chose to donate platelets because they're in much higher need for those for my particular blood type. And platelets are only good for 5 days, I think. So they don't get to bank those up for very long at a time.) Anyway, the apherisis machine is a large one. And I've seen it many times in the cancer clinic for kids trying to harvest stem cells to use after transplant. It's an all day process for those kids and they often have to do it multiple times to get enough cells for transplant. As I watched the machine run and my platelets fill up in the bag, my fears that we could be so close to needing this sort of thing for Gavin just overwhelmed me. I was so happy when my donation came to an end. Before I left, the woman helping me said she had never seen platelets being transfused to a patient and asked if that's what they looked like after they're processed. I chuckled and then sort of sighed. "Yes," I replied. "That's exactly what they look like." How could I forget!

But, I must say that the donation process itself was simple. Fairly painless. And the warm fuzzies came over me once I was driving home. I do plan to return. In fact, I already set up appointments for two future donation dates. I hope to return with excellent news of Gavin's clear scan if I see the same woman again. And I pray that I will get past the painful memory issue with donating and just focus on the good that will come out of it.

I struggle with the fact that I still can't seem to trust God 100% that Gavin's life is in His hands no matter what an MRI reveals. I don't feel right saying that I trust God to keep Gavin cancer-free forever. While I trust that God COULD keep Gavin cancer-free forever, I don't know what His plan is for Gavin. And while I fervently ask God to heal Gavin of any cancer cell that may be in his body, I have talked with Him about the possibility that cancer is again in our near future. And I painfully ask that He prepare my heart if that is the case.

Please continue to lift our family, especially Gavin, up in prayer. We hope to give you exceptional news on July 7th.

Much love,

I Believe

2011-06-05T23:23:00.001-05:00

I believe in a God that cares.
I believe in a God that comforts.
I believe in a God that rescues.
I believe in a God that redeems.
I believe in a God that knows.
I believe in a God that understands.
I believe in a God that holds.
I believe in a God that leads.
I believe in a God that heals.

Two nights ago I picked up my Bible to read from a selected reading list that is designed to help you read through the entire Bible. And I was amazed at what was in store for me on that very specific night. It said to read Mathew 7, 8, and 9.

For those that are not as familiar with the Bible, Mathew is the first book in the New Testament (the back portion of the Bible). It tells the story of the life of Jesus. His birth, his teaching, his healing, his crucifixion, his resurrection, and his ascension back into Heaven. Consider reading it if you haven't yet done so. If you don't own a Bible, go to http://www.biblegateway.com/ and just type "Mathew" in the search box. You can read it online. While it's considered to be "a book," don't let that intimidate you. It's not all that long. Choose a version like the New International Version or (my personal favorite) the New Living Translation. The Bible is not as difficult to understand as many seem to think it is.

Okay, so back to my story. The reading list said to read Mathew 7, 8, and 9. And so I did. Let me give you some of the highlights that blessed me that night.

The Effective Prayer - encouraging words about asking in prayer and receiving what you pray for (Mathew 7:7-9)
The Narrow Gate - reminder that the gateway to God is more narrow and the road more difficult (Mathew 7:13-14)
Jesus Heals a Man with Leprosy (Mathew 8:1-4)
The Faith of a Roman Officer - Jesus heals a sick servant without even going to see him because the servant's officer believed that Jesus could do so. (Mathew 8:5-13)
Jesus Heals Many People (Mathew 8:14-17)
Jesus Calms The Storms - He silenced a raging storm, helping his disciples increase their faith. (Mathew 8:23-27)
Jesus Heals Two Demon-Possessed Men (Mathew 8:23-34)

Starting to see a theme here? But wait, there's more.

Jesus Heals a Paralyzed Man (Mathew 9:1-8)
Jesus Heals in Response to Faith - Jesus heals a woman that had been bleeding for 12 years. And he brings a young girl back to life. (Mathew 9:18-26)
Jesus Heals the Blind (Mathew 9:27-34)

Some may call it a "coincidence" that these were the scriptures for me to read on this particular night. But I do not. To help my point, I will be so bold as to share with you what I had written just moments before in my prayer journal.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dear Jesus,

You know my anquish better than I could ever articulate it. I struggle to find words better than, "Please, not again!" Have I taken the past two years for granted? Could it be true?

I ask that you heal Gavin of any and all cancer cells that may be taking up residence in his body. It is so hard to imagine that relapse is your will for his little life! I know that you healed him the first time. I beg you to grant him a clear MRI again.

Please grant us peace during this time of great unknowns. Remind us daily to turn to you alone with our fears. Fill me with your Holy Spirit. May I draw closer to you because of this.

Pediatric cancer makes me so sad.

I love you,
Stacie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Do any of you still find this to be nothing more than a coincidence?

I believe in a God that speaks.
I believe in a God that loves.
I believe in a God that heals.

I do not know God's plan for Gavin's life. However, I do know what He is capable of. And I know that He wants me to ask for it, expecting Him to answer accordingly. Thanks for joining me in praying for my little boy and asking others to do the same.

Much love,

The Waiting Game

2011-06-02T23:28:00.001-05:00

Today we went to Children's Medical Center for Gavin's follow-up appointment with his oncologist. Sitting in the waiting area before Gavin was called back for vital signs was eerily familiar. Sure, we've done it so many times, even since treatment ended. But honestly, all of those post-treatment follow-up waiting room stints were simpler. We had already received a phone call from the oncologist, letting us know that the scan was good. Of course, it's always heart wrenching to sit in a waiting room that is unfortunately overflowing with sweet, bald kids fighting cancer. I always look around the room and remember being in those "on treatment" shoes. Gavin was so sick. We were desperate to make him feel better and the end of the chemotherapy that was making him so sick seemed to be a lifetime away. And since he ended treatment, those follow-up waiting room visits always reminded me how blessed we were to be on the "after treatment" side of the clinic.

But today was different. I sat and watched the other children. And instead of feeling sad for them or praying for those in the room, I started wondering things like, "Hmmmm...I wonder how many of these kids are here because they relapsed." Or "I wonder how many other people are waiting for answers that could be life changing for their sweet child." And I started fearing that we might not be that far away from being back in those shoes. Luckily, our stay in the waiting room was MUCH shorter than usual. I believe this was a blessing because my thought process was heading nowhere positive very quickly.

Gavin's examination with the oncologist went pretty well. Gavin's always entertaining during a neuro exam. The doctor said he thought Gavin looked better than he's ever seen him before. Bummer we couldn't say the same about his MRI. After the physical examination was over, Gavin was whisked away by one of his favorite child life specialists, Jennifer. She and Gavin go way back. She was one of the first child life specialists to interact with Gavin after he was diagnosed. He was crazy shy back then and terrified by what was going on. She and Kristen made life for Gavin much more fun. I think he will always hold a precious place for those two in his heart. If this tells you anything, the oncologist walked in this morning and Gavin immediately asked him where Jennifer was. ;)

I love that Children's has such wonderful child life specialists that will take Gavin away for fun entertainment while we sit and talk about heavy topics like relapse. Clearly, it's not a conversation I want Gavin involved in while there is still so many questions. So, if you run into me out and about and Gavin is at my side, don't be surprised if I answer, "Great!" when you ask me how Gavin's doing. I'm not going to talk about it in front of him.

We got to see the MRI today. I was hoping the new spot of concern would be something so small that I would have a hard time seeing it. You know, like those early sonogram shots in a pregnancy where you wonder if you're looking at the head or the belly. Unfortunately, that wasn't the case. We were shown the same shot of Gavin's spine from his last MRI side-by-side with his new MRI. Who knew something only estimated to be 1 mm x 3 mm could be so glaringly obvious to us? It looked all too similar to what I recall the base of his spine looking like at initial diagnosis. Chilling, to say the least.

We discussed what the neurosurgeon had said yesterday. We talked at length about what this new finding could be. And we talked about possible plans from this point forward. We did learn that of all the places along the spine that an artifact is likely to show up, this is the most common place. So that was a highlight for me. A beacon of hope. But while discussing the benefits of repeating the MRI sooner rather than later, Gavin's oncologist told us that if we scanned too soon and the spot seemed stable (unchanged), we may not be giving the area enough time to change. (sigh) And if this is truly new tumor growth, beginning treatment after a scan in 3 weeks versus a scan in 6 weeks won't make a huge difference. Gavin's prognosis would be poor. (double sigh)

So the current plan is to wait for 5 weeks before we repeat the MRI. While Gavin is under anesthesia for that scan, his oncologist will come over to radiology and complete a lumbar puncture as well. This pulls a small amount of cerebrospinal fluid out of his lumbar spine. The sample is sent off to the lab to see if any malignant cells can be found. If it's positive for malignant cells, we'll know without a doubt that this is relapse. If it's negative, that doesn't necessarily rule relapse out. There would still be the chance that we didn't catch a malignant cell in the sample pulled. (sigh)

Thank you again for checking in on Gavin. I have received so many texts, comments, emails and facebook comments from you all. I am scared, but mostly stunned by the possibility before us. But the messages have lifted my spirits. I especially appreciated those of you that reminded me of specific times that we prayed for Gavin and saw direct answers to our prayers.

Please keep Gavin in your prayers. And feel free to spread the word. Let's storm Heaven on Gavin's behalf.

Much love,

Please Pray For Gavin

2011-06-01T23:43:00.000-05:00

As many of you know, Gavin had an MRI on Friday. While we didn't receive the "all clear" like we'd hoped to hear, we also didn't hear news of certain tumor growth. I felt hope. In my last post, I mentioned that we were waiting on the last leg of the Triple Crown of MRI readings, a call from the neurosurgeon. He called today. I'm trying to find the right word to adequately describe how the conversation left me feeling. I think scared is the best fit.

On Friday, the oncologist had said he felt concerned, but it was a fairly low level of concern for the risk of new tumor growth. Possibly new growth, but it could very well be something other than tumor. Like the artifact I've been hanging my hopes on ever since.

The neurosurgeon wasn't quite as optimistic, which surprised me. He always seems to be the more laid back of those two doctors. He mentioned that he felt it was "just as likely tumor as it was artifact." I read that to be a 50% chance that we're dealing with new tumor growth. He also said he was in agreement that waiting 6 weeks to repeat the MRI seemed like a reasonable plan. But then he said that if this was in fact new tumor growth, Gavin would likely begin exhibiting symptoms of the tumor before the scan in 6 weeks. And his symptom would be pain in his spine. When I talked about the size of the area, he mentioned that it was indeed small. But that it wouldn't have to get much bigger to induce pain.

While I obviously appreciate his honesty, I cannot tell you how defeated Jeff and I have felt tonight. Suddenly, our usual list of questions for the appointment with the oncologist tomorrow (a decent list in length to start with) has become much longer and more serious. I know our oncologist well enough by now to know that he's not going to be interested in discussing potential treatment until we're certain it's new tumor growth. Yet, Jeff and I are already feeling like we need to know what (if any) gains have been made in the AT/RT world in recent months for children with relapsed disease. We know the harsh reality of this type of cancer. It's aggressive. Six to eight weeks is all the time they estimate Gavin had cancer before his initial diagnosis. And it took up 1/3 of his brain and sugar coated his entire spine. AT/RT grows like wildfire.

Tonight, the rug feels like it's been yanked out from under me. Not completely. But enough to get my full attention. And I must admit it feels a bit paralyzing. And all too strangely familiar.

I am not ashamed to ask for abundant prayer during this time. Please lift Gavin up while we wait on another scan. I know that God is Gavin's ultimate Healer. I ask Him to obliterate any and all cancer cells that might be lurking in Gavin's body. I ask for discernment for the doctors that are guiding us during this time of the unknown. And I ask for peace for Jeff and me. Because we're not feeling it tonight.

Thank you for checking back in on Gavin. I'll do my best to update after tomorrow's appointment. I don't know that we'll have big news to report, but I expect to have a few more details as well as a definite plan of action (or should I say waiting) in place.

Much love,

The Short & The Long Of It

2011-05-27T14:23:00.000-05:00

Gavin graduated from kindergarten yesterday and had his regularly scheduled MRI this morning. What every kid does to kick off the summer, right? (Graduation pics to follow)

We received a call from Gavin's oncologist this afternoon. As he put it, there's a short version and a long version to Gavin's MRI. Let me explain.

Overall, the neuro-radiologist and Gavin's oncologist feel that the scan was a good one. However, on one of a number of slices done on the very bottom of Gavin's spine, something was identified. They're not sure what it is, but it is very small in nature. I think he said it was 1 x 3 mm. It could be one of at least 3 of the following things:

1. An artifact. That's something that shows up on the scan, but isn't actually present on the person. It can occur because of a number of reasons (i.e. machine malfunction, heat, humidity, bloodflow, and others I don't even know about). Basically, if this were the case, the spot seen on the scan wasn't really a spot on Gavin's spine. Just a spot on the scan. An error of sorts.

2. Something that's been there all along but has never been captured on a slice of this area. MRI technology is fabulous, but it isn't perfect at capturing every single bit of what it's scanning.

3. New tumor growth, in the very early stages.

Obviously, we hope it is simply an artifact. Something that will never show up again on an MRI. Our next hope is that it's something that has been there and won't be changing. Just some sort of benign abnormality that we happened capture because we have to scan the area like we do.

Tumor growth - two words that go straight to my core. While Gavin's oncologist says his concern that this is recurrence is relatively low, it's a possibility. He did say that the inconsistent symptoms we've noticed over the last couple of weeks have nothing to do with this spot. Those would be more indicative of something going on in the brain, not the spine.

Gavin's neurosurgeon hasn't reviewed the scan yet. While I certainly respect the interpretation of the radiologist and oncologist, I still want to know what the neurosurgeon thinks once he has a peek at the MRI. It's like the last leg of the Triple Crown for MRI interpretation in my opinion. I'll update when we hear what he has to say. It could be next week, as I know he's in surgery all day today and Monday is a holiday.

The current plan is to repeat the MRI in 6 weeks to see if the spot is still there and if so, if it has changed. Please join me in prayer that the spot will be nonexistent at our next scan.

Thank you checking in and praying for Gavin during this time. He has no idea there's even a spot in question. And honestly, I plan to keep it that way. There's no sense in concerning a 6 year old with such things. His greatest concern should be what he should do with his newfound summer freedom!

Much love,

Lyrics Of My Life - Blessings

2011-05-21T22:13:00.000-05:00

It's no secret that music is my therapy. A well-written song can speak so strongly to us, can't it? My current favorite is a song called Blessings, written and sung by Laura Story. I hope you take a moment to listen to it. Just don't forget to mute my blog's music down at the very bottom of this screen before you hit play.

Do you like it as well?

Much love,

It's An Ugly Cycle...And One I'm Not Proud Of

2011-05-18T23:23:00.003-05:00

I've started and stopped this post a number of times. I don't know why, but I keep abandoning it. My thoughts usually flow when I blog. Not so much on this one. So, sorry if it seems scattered.

Gavin has an MRI a little over a week away on May 27th. He has had some random (but unsettling to us as parents of a child with a history of cancer) symptoms over the last week or so. I say random because each of the concerns has been noted only 1 or 2 times. It hasn't been enough to give the oncologist a call and ask to move the MRI date up. But, it's been enough to give me fear once more.

The fear is much like Gavin's symptoms. Inconsistent. One moment I'm feeling confident that everything we've noted is completely fine and that I'm simply a neurotic "cancer mom" that's checking her kid's eyes with a flashlight to see if the pupils are reactive, even though it was just the first episode of vomiting in nearly 2 years. The next moment, I'm nearly paralyzed by the fear that we might be hit by a freight train at our next MRI. That this charade of normalcy that we've tried to regain is just that, a charade that is about to come to abrupt halt.

Relapse in any cancer patient is never welcomed. Relapse in a child with a history of AT/RT is terrifying. And that's not an exaggeration. It's just our reality.

As one oncologist put it ever so eloquently a couple of years ago, we have to "get used to living with uncertainty." But, seriously? How do you ever really get used to that when you're talking about your child and cancer in the same sentence? I'd love to say that I just have the best faith ever and that I never fear relapse because I know God's will will be done, even if that's not what I hope for. But it would be a lie. I'm still human and with it comes human emotions.

And because I'm feeling pretty honest here, I will share some of it with you. It's an ugly cycle. At first it begins as fear. I fear the worst, knowing where Gavin's been before and how grim the prognosis would be if he were to relapse. Next up is guilt. I look back at the time we've had since Gavin's cancer treatment ended nearly 2 years ago. I start analyzing how we've spent our time with him. And I feel guilty that maybe it wasn't good enough. Maybe it was too much of this or not enough of that. Or maybe we weren't grateful enough for the miracle of his continued life. And now it's all about to end. That thought makes for the perfect segway straight back into fear. Fear that we really are about to find out that he has relapsed. That it will not respond to treatment again. That we'll have to have those heart wrenching conversations that simply didn't happen the first time around because he was so much younger, but seem fairly common in cancer kids that are close to Gavin's current age. The ones about dying. Answering questions like, "Why won't Jesus heal me, Mommy?" and "What will heaven be like?" Fear that Garrett will worry about his brother dying. Or that his brother will die. And then trying to help a 4 year old grieve when he's just not old enough to understand it at all and I am anything but graceful in my own grief. And after that morbid run with fear, I head right back into guilt. Guilt that I've even allowed myself to think about the worst. That my faith isn't stronger to handle a few nutty symptoms in a child that seems to otherwise be doing fine. Guilt that I've said anything to anyone other than Jeff. Guilt that I'll make them worry. And then if the MRI comes back perfectly fine, they'll think I was being dramatic about the whole thing.

Like I said, it's an ugly cycle...and one I'm not proud of. Hence, the blog post that's been abandoned several times.

I ask most importantly for prayers for Gavin. Prayers that even the tiniest of cancer cells within his little body would be obliterated before this next MRI. Prayers that he will continue to thrive despite the odds.

I ask for prayers for Jeff and me. Prayers for peace even though we'll never know what the next scan could hold for us. Prayers for guidance as we make both big and small decisions for Gavin. And that he will be a better person because of it.

And I also ask for prayers for Garrett. Most children don't spend a fraction of the time Garrett spends sitting in waiting rooms. Yet, he's sweet during the wait. (Or at least until his brother comes out and then they go nuts!) Therapy, doctors appointments, and scans for Gavin are all Garrett has ever known. And I'm always amazed at how patient and loving he is at every step of the way. Please pray that this continues. And that he never feels slighted by the amount of time needed for Gavin's appointments.

I so appreciate those of you that have stuck with us through it all. I know some posts have to be harder to read than others. But I appreciate you accepting my transparency for what it is. And lifting us up in prayer because of it.

Much love,

Gavin's Description Of Me

2011-05-14T23:07:00.000-05:00

A recent picture of Gavin. And yes, he was playing in a box!

My last post involved answers to questions Garrett's preschool teacher had asked about me. The week following Mother's Day, I found something similar in the depths of Gavin's backpack. So I thought I'd share it as well. Most of it is accurate, but I won't ruin it by telling you what's not accurate.

My Mom

By Gavin Smith

My mom's name is Stacie Smith. I'm not sure how old she is, but I think she is 10 years old and can drive the car by herself! Her favorite color is purple. She has brown hair and brown eyes. She works at the hospital. She works on patients who cannot talk.

My mom likes to play with me. We play with my garbage trucks. My mom makes me laugh when she tickles me all over. I like for her to cook grilled cheese sandwiches, but I don't like chicken or chicken nuggets. My mom likes for me to help her cook.

My mom is really pretty when she puts on a dress to go to Bible study. My mom loves me, and I love her!

Sweet boy!! :)

My Mom Is...

2011-05-06T21:09:00.001-05:00

Garrett's preschool teacher asked them fill in the blank for several things about Mom this past week. Garrett brought home the sheet with his answers about me. Very cute!

My mom is special because she's a girl.
(Since I'm the only girl in this house, I guess that makes me special.)

I like it when my mom reads me a book.
(Which is a good thing considering we like to read around here.)

My mom can do many things! I think she's best at sewing.
(Those that know me at all will think that one is funny. I don't sew. At all.)

My mom has a pretty smile! I like to make her smile by cleaning up my toys.
(He does a pretty good job with that one. ;)

My mom is as pretty as a Spiderman.
(Enough said, right?)

My mom is smart! She even knows about books!
(Yes, even books.)

Sweet boy! I feel privileged to call Garrett (and Gavin) my own.

Much love,

Belated Easter Update

2011-05-02T23:53:00.000-05:00

The kids had a wonderful time this past Easter. They enjoyed the Easter egg hunts with even greater enthusiasm than last year. And I was so pleased to see that their understanding of the Easter story was becoming a bit more solidified. Last year they seemed more focused on the fact that Jesus had been "killed on a cross." And Garrett couldn't understand why "the bad guys" would do that to Jesus. This year, they spoke more about what happened after the cross. It was fun to watch them learn even more and ask some great questions along the way. Below are some pictures from the egg hunts.

Garrett was excited to get the hunt underway at the Easter social for our Bible Fellowship Group.

Look, Mom! It's yellow! My favorite color!

Gavin's never so excited about Mom's pictures. Apparently, there's no time for the papparazzi during an egg hunt!

Still moving. Seriously, I couldn't get him to look directly my way at all during the hunt. He was a man on a mission!

While Jeff didn't hunt for eggs, he was kind enough to hold the loot for one of the boys afterwards. It's just a good thing Jeff doesn't have much of a sweet tooth!

At the school hunt, Garrett switched from his baseball basket to his homemade bunny basket from last year. Again, all smiles. And still willing to look at Mom here and there for a pic!

Gavin's school hunt. A smile almost caught on camera! He had a great time.

And while Gavin wouldn't stop for a formal picture, he was kind enough to stop and help his buddy Isaac's little sister get an extra egg in her basket. Such a gentleman, huh? :)

I hope you all enjoyed your Easter festivities as well. Haven't posted about them yet? I'm here to say, there's no shame in posting Easter pics in May! Come join the fun!

Much love,

What He Remembers

2011-04-27T13:50:00.002-05:00

I am not sure what all Gavin remembers from his early days of cancer treatment. I hope he has little recollection of just how sick and painful those days were for him. But I know that's not likely the case.

Yesterday we saw an ambulance on the road, sirens blaring. We pulled over to the side of the road. Garrett asked why we pull over for an ambulance. I explained that the person in the ambulance was probably hurt or very sick and that we get out of the way so that they can get to the hospital as quickly as possible. Gavin then chimed in with his ambulance experience. He said that when he would get really sick he rode in an ambulance too. And that he liked to watch Happy Feet every time. (The Children's ambulance has a DVD player right above the back door.)

Garrett went on to talk about how sick Gavin was. And then Gavin said, "Yes, but Mommy and Daddy were praying for me. So I got all better." I went on to explain that there were, in fact, hundreds of people praying for him. And that God and the special medicine made his cancer go away.

It always surprises me when Gavin says things about those darker days of his life. He says it in such a nonchalant way. Like it's just no big deal at all. But, what I love is the fact that even though he was so young when it all started, he is now able to process the role that God played in his healing. It further reaffirms my faith that while God didn't cause Gavin to have cancer, He is using Gavin's circumstances to show others (including young Gavin and Garrett) just how real He really is. And that's amazing to watch.

Much love,

Friday Flick - Follow

2011-04-22T08:00:00.001-05:00

Click on the link below to watch a a video. Just trust me ahead of time that it is worth watching.

The video puts Holy Week into a format we're all too familiar with. I thought it was pretty powerful. As usual, don't forget to mute the music on the bottom of my blog before you click on the link.

http://www.ignitermedia.com/blog/index.php/2011/04/12/new-for-easter-follow/

Happy Easter, friends!

Much love,

Lyrics of My Life

2011-04-21T22:09:00.002-05:00

Just discovered a song called Blessings that is sung by Laura Story. Love, love, love it. And thought you might as well. It provides such a good perspective about the trials we go through in our lives. Check out this You tube video. (Just don't forget to mute the music at the bottom of the blog first.)

Much love,

Grow With Me

2011-04-20T21:48:00.000-05:00

Some of you may recall that I chose to donate some of my hair about two years ago to the Pantene Beautiful Lengths program. You can read this post that I wrote, discussing it a bit more.

Since my last donation, I kept chopping my hair off once the temperature in Texas started to rise above 90 degrees. My hair is getting longer again. The temperatures are starting to go up. But I am going to resist the temptation to chop my hair for the summer. I have decided to tough it out through the heat until I have at least 8 inches to donate to an organization that makes wigs for cancer patients. I may donate to Pantene Beautiful Lengths again or I may go with Locks of Love. I will need to wait a little longer if I go with Locks of Love. Their minimum donation is 10 inches. Regardless, this hair of mine is going to do some good when it gets chopped off.

Won't you consider growing your hair out with me? Perhaps you are in the donation range and are considering the summer chop. Check out either Pantene Beautiful Lengths or Locks of Love and discover just how easy it is to make a difference in the life of a patient suffering from hair loss.

Perhaps you aren't close to the donation range at all. Consider letting your hair grow. Not only will you get the warm fuzzies from doing a good thing when you donate, think of the money you would save by not getting your hair cut so often. And many hairdressers don't charge you for your haircut when it's time to donate. It's a win-win!

Let me know if you decide to donate. I'd love to hear about it!

Much love,

Lyrics Of My Life

2011-04-18T00:38:00.001-05:00

Music is a form of therapy to me and I love to listen to music when I work out. Luckily for the folks around me at the gym, I don't sing aloud. I do apologize to those that may see me mouthing the words like a lunatic though. Know that it keeps me moving and that's important since I took a longer than normal hibernation from working out this past winter.  Because I choose to listen primarily to praise and worship music, it also lifts up my spirit as well. I like to think of it as a well rounded workout. Mind, body, and spirit in one foul swoop! Efficiency, I know. :)

One song really grabbed my attention tonight on a late night treadmill run here at the house. And I felt compelled to write about it before I called it a night.  It is actually a hymn, called God Be With You. The version I love is done by Selah. The lyrics speak straight to someone who would be grieving the loss of someone dear to them.

Being submerged into the depths of pediatric cancer, I know a number of people who have lost their child. While listening to these lyrics, I pray for those friends. Anywhere it says "till we meet again" I think "till you meet again" instead. I find it's just the perfect prayer for these special people in my life (and for anyone you might know that is grieving the loss of a loved one).  I'm including the lyrics and video for those who are interested. Just remember to pause the music at the bottom of this blog before you try to watch the video.

God Be With You
God be with you till we meet again
By his counsels guide, uphold you
With his sheep securely fold you.
God be with you till we meet again

God be with you till we meet again
Neath his wings securely hide you
Daily manna still provide you
God be with you till we meet again

Till we meet, till we meet
Till we meet at Jesus' feet
Till we meet, till we meet
God be with you till we meet again.

God be with you till we meet again
When life's perils, they confound you
Put his arms unfailing round you
God be with you till we meet again.

Till we meet, till we meet
Till we meet at Jesus' feet
Till we meet, till we meet
God be with you
God be with you
God be with you till we meet again.

Much love,

Play Ball, Garrett

2011-04-15T21:30:00.009-05:00

Garrett's first 2 games for tee ball have been so much fun to watch. I think I must say, "Those boys are so stinkin' cute!" at least 10 times per game. So cute, in fact, that I had to share a few pics of my own cutie.

All smiles before the first game.

Working on his alligator hands, ready to catch a ball

Dressed up like a catcher. At this stage, there's not really much catching going on except for mom catching a cute pic of her favorite catcher. ;)

Garrett and Daddy (who is helping coach the team)

Garrett seems to really enjoy tee ball so far. He seems to be a bit more into this sport than he was with soccer although when he was asked which he liked better, he said he likes "them both better."

Much love,

Pray for Kate

2011-04-14T22:02:00.000-05:00

I know many of you follow the journey of a fellow brain tumor warrior, Kate McRae. Please keep her in your prayers as she is ending radiation this week down at MD Anderson and will soon head home to Arizona. Her medical team will be making decisions about which chemotherapy agents will give her the best shot at beating her cancer for good.

We were down at MD Anderson over Spring Break for one of Gavin's appointments and were able to meet up with Kate McRae and her family. Her mother, Holly, and I have corresponded some by email since fairly early on in Kate's journey with brain cancer. We had also spoken on the phone several times, but never actually met.

It was wonderful to get to hug their sweet necks in person. And it was delightful to watch the kids interact. It almost seemed like Gavin and Kate had an instant connection. Two warriors that understand each other in ways that the rest of us never possibly could.

Gavin and Kate

This is a beautiful family with such transparent faith. If you aren't already praying for Kate's complete healing, won't you join us? Go to www.prayforkate.com (and click on enter blog) to keep up with her journey. I pray that the next time we meet up with the McRae family we'll have more to celebrate.

Much love,

Music Updated

2011-04-10T23:40:00.000-05:00

Some of you may hate the music that plays here on the blog. I am sorry and thank you for reading the blog regardless. :)

Some of you have told me numerous times that you love the music I have on the blog. So, I wanted to let you all know that I have added 7 or 8 new songs. If you are curious what they are, scroll down to the bottom of the blog and checkout the playlist. The new songs will be the last ones listed. Hope you enjoy them as much as I do.

We had some beautiful weather here in the Dallas area this weekend. It was perfect weather for Garrett's tee ball team, the Giants. Pics to come. Let's face it, there's nothing cuter than a 4 year old pretending to be catcher at a tee ball game, right? ;)

Much love,

Table Wanted

2011-04-07T23:01:00.000-05:00

I am looking for a children's table and was wondering if any of you out there in the Dallas area might have something similar to what I'm looking for that you'd be willing to sell. I've been shopping around and just can't find what I want. I have a table that I love, but use for something else. It's from IKEA and they no longer make it. Here are the dimensions that are ideal.

Table:
- Height    21 inches
- Width     21 inches
- Length    35 inches

Chairs (2 or 4 of them)
- Height    13 inches (from floor to seat)

If you have something that is in the ballpark of these dimensions, shoot me an email with a picture and your asking price. ;)

Many thanks!!!

Smithville Update

2011-04-05T22:15:00.001-05:00

I've been a stranger. It's been entirely too long since I last posted on here. I've thought of it many times, but never posted. I'm not sure there are that many people out in Bloggyland that are chomping at the bit to read a post from me. But, for those of you that have wondered what was up with my silence, remember that no news is good news. :)

We are doing well. I'll start with an update on Garrett.

He went to see a new neurologist on the 22nd of March. She's known for her work with neuromuscular disorders. Garrett's other neurologist will be retiring soon, so he thought this was an appropriate time to move Garrett on over to someone else's care. The consultation went well. She said that whatever is going on with Garrett is quite mild in nature. She doesn't feel it puts him at any great threat and left it up to us as to whether we wanted to proceed with a muscle biopsy to search for a formal diagnosis. We thought it over and talked with Garrett's previous neurologist. The fact remains that nothing changes with a diagnosis at this point. There's a chance that he could be at risk for something called malignant hyperthermia if the wrong drugs were used by an anesthesiologist. However, we can just tell the anesthesiologist to avoid those because of this risk. Needless to say, Jeff and I are quite relieved by all of this. To top it off, Garrett was recently discharged from physical therapy. :)

As for Gavin, he's trucking along nicely in his therapy and schoolwork. His next MRI will be in late May. And the end of June will mark 2 years since he ended his cancer treatment. The latest news regarding Gavin right now would probably be the fact that we've officially decided that I will be homeschooling Gavin next year. Many of you may recall that I did some homeschooling over the summer last year with Gavin but eventually decided to send him to the school at our church. That class has been such a blessing for Gavin this year. The small teacher-to-student ratio has allowed more one-on-one teaching with Gavin. The environment has been super nurturing. And the schedule better allowed us to fit in therapy and medical appointments without pulling Gavin from his class. It's been fun to watch Gavin flourish.

Learning, however, doesn't come effortlessly to Gavin. It's to be expected with all of the trauma that comes with neurosurgery, craniospinal radiation, and chemotherapy injected directly into the brain at such a young age. But, as a mom, it's still hard to see that school isn't easier for him. Gavin's teacher will say that Gavin works harder than any other child in the class. It's just like he's fighting his own mind to accomplish that which comes much easier for his peers. But he works. And he learns. And that which he learns, he does not forget. A big blessing.

Many of you may be wondering why we have decided to homeschool next year. I'm happy to share, as I feel it's a special story. The school year has shown us just how important one-to-one teaching is for Gavin at this point in his life. Initially, Jeff and I had decided to place Gavin in the school district that we live in. It's a wonderful district. And a large part of why we moved to this area. One day, however, I ran into a friend from church. We discussed Gavin's education a bit and I began to sense that God wanted me to pray on this some more. I began praying as soon as the conversation was over and prayed on and off all morning long about it. I asked God if He wanted me to consider homeschooling Gavin next year. And I kindly reminded him that I really needed some signs from Him if that was what He wanted because I tend to stress out about those kinds of decisions. Lo and behold, that afternoon Gavin's teacher talked to me about how much Gavin needed one-on-one teaching. And when I told her that I had just started praying about homeschooling, she didn't balk at the idea at all. In fact, she was pretty supportive of the consideration.

I left the school asking God if that was the sign I had requested or if I had just read too much into the situation. I begged Him for more signs. And He responded. I am currently doing a Bible study by Beth Moore on Esther. Nearly every lesson would scream out to me about this decision. It was amazing! I laugh at it now, but at the time I was not convinced that these were signs from God about what I should do. I still felt very overwhelmed by the decision on hand and was begging God for more signs. (And trying my hardest not to get too overwhelmed, knowing that three years ago we were making life-and-death kinds of decisions. I promise I try to keep things in perspective.)

A week or so later, I was on my way to Gavin's vision therapy. I let the boys watch a movie on the way, which isn't our norm for that trip. And I got a call from my dear friend, Joy, at a time that we usually don't get to chat. Joy and I were talking about my education dilemma. I was telling her that I was really asking God to give me a sign. A large sign. A black and white sign. You know, one that I just couldn't miss. The words had barely left my mouth when I noticed a store along the road. The same road I had been traveling for 8 or 9 weeks in a row. And ironically enough, it was called nothing better for the situation than The Home Educator's Resource Store. (Seriously. Like I could make that up!) Chills came over me and I quickly told Joy about what I had just seen. We both laughed and laughed and determined that God must have a sense of humor. Here I had been begging Him for a sign. He was doling them out left and right and I wasn't quite sure if I was really getting messages from Him or reading too much into each situation. It's as if God finally said, "Okay, Stacie. You want a sign! Here's your sign! (Literally!!) Now please quit asking me for more signs!" ;)

I love that God doesn't give up on us, even when we are so slow to understand His plan for our lives!

After I had decided to homeschool, the fear set in. I began to worry that I would somehow mess Gavin up if I educated him at home. I began to think that perhaps I should enroll him, just in case this didn't work out so well. I even dropped by the school to pick up an enrollment packet. But guilt wouldn't let me fill it out. I could hear this still, quiet voice deep inside of me saying, "You don't trust me on this, do you, Stacie?" It was God and I knew it. I tried to reason with Him that it wasn't that I didn't trust HIM. I didn't trust ME! He quietly reminded me through that quiet voice, the words in my Bible study, as well as another Bible study class member that if He called me to do something, He would also equip me to do that something. And I began to feel that if I turned in that enrollment packet as a Plan B of sorts, I would really be doing it out of disobedience to God. Letting my fear win instead of trusting God's plan. Jeff was super supportive and reminded me that he felt I would do a wonderful job with Gavin's education next year. So, I allowed the day of enrollment to come ... and go.

I feared that the would be filled with mixed emotions. Fear and anxiety that I had made the wrong decision. That even with my professional background and my love of planning learning activities for the boys, I would somehow screw it up. Yet, the day was wonderful. I felt such peace. The kind that surpasses all understanding. The kind that has to come from above. And I felt confident that we had made the right decision.

I've gone into full planning mode during this time, which is a large part of why I haven't been blogging. It's consumed my thoughts and I have to say, I'm getting very excited about it now. I know that we'll work some on school over the summer. I just haven't determined how much we'll do each week. If you think of it, will you pray that this transition goes smoothly? That Gavin isn't sad that he won't be "walking to the BIG school" next year like he had previously planned. That this year will be one of great growth for Gavin. And that our relationship will only grow stronger.

I'll keep you posted. And I'll try to pop in on a more regular basis. I have some fun pics from Spring Break that I haven't yet shared. Thanks for checking in on us.

Much love,

Three Years Ago

2011-03-21T11:44:00.001-05:00

Late last night three years ago a CT scan of Gavin's brain revealed a very large brain tumor. And three years ago this morning we were further shocked to learn just how aggressive the tumor was and that tumor had also overtaken Gavin's spine.

Just thinking of those early days makes my heart beat a bit faster. Waves of shock sweep over me again. The unthinkable becoming our new reality. Hearing the dismal prognosis of 20-30% chance to survive taking my breath away. How could it be?

Yet, it was.

Many of you have been faithfully praying for Gavin since the beginning. And many of you joined us along the way. I am grateful for each of you.

Gavin has come so far in the last three years. He has defied the scientific odds. He has been a walking testimony of God's presence. And he has done his best just to be a boy.

I think our family in general is very different from before cancer. But I clearly see the blessings that have come from it all. I know my faith wouldn't be what it is without being forced to walk through this tribulation. We have an entirely different perspective on life that I know wouldn't have just come to us naturally. And while I know I was grateful for my children before cancer, I frequently thank God for the gift of their life now.

Don't get me wrong. I still mourn. I don't readily accept the trials that continue for Gavin as a result of his cancer and necessary treatment. But I know without a shadow of a doubt that this all happened for a reason. And God allowed the cancer because He knew the eternal good that would come as result. I rely on God to continue carrying our family. He is good. Even when life seems to deal a bad hand from our worldly perspective.

Curious George the movie is playing today in the therapy waiting room. Garrett is in my lap. Oddly enough, I was curled up in Gavin's ICU bed watching this same movie with him three years ago, fearing we wouldn't have many more movies together. I prayed that I would have the opportunity to do things like this. Sitting in a therapy waiting room. Waiting on my son, who was surviving his cancer despite the 70-80% chance that he wouldn't make it.

Thank you again for walking along with us.

Much love,

Sight Word Bingo

2011-03-13T21:40:00.000-05:00

So, I know I'm not the only parent out there trying to make practicing sight words more fun. I wanted to make sight word bingo, but didn't really want to make it from scratch. I googled "sight word bingo template" and found a great site that allows you to make all kinds of bingo games. You can choose from all sorts of categories. A few categories are for sight words, divided up by difficulty. I chose the "primer" level. From there you can choose which words you want in your bingo card. And a step or so later you can even add more words that weren't already on the list.

Gavin has mandatory sight words for kindergarten. Garrett actually wants sight words in order to be more like Gavin. So, I chose words that are currently in both Gavin and Garrett's sets of sight word cards. I think they're going to have fun with this.

And since I thought more parents would love to make something like this without reinventing the wheel, I figured it would be nice to share the link. Enjoy!

http://www.print-bingo.com/

Much love,

The Speed Of Normalcy

2011-03-08T21:31:00.001-06:00

Today has left me in a bit of a bummer mood. I am not exactly sure what triggered it. Maybe nothing at all. Perhaps all of it combined. It was one of those days where I felt like the world was spinning around at 1,000 miles per hour. Perhaps you know the speed.  I think it's the officical speed of normalcy.  And you notice the difference the easiest when you are clearly in a different lane of life.

It seems so much faster when you're not exactly flowing along with the pace of the herd. You are watching the others fly by in all their glory. And you feel guilty about the envy that is creeping in as you watch the herd. Life seems effortless and fun for all involved.  Sure, it's busy. But it's a bit more self-induced chaos. Coming and going from the activities that were sought out and are designed to be enjoyable. Herd life is not a bowl of cherries for everyone. But from your angle, it sure looks nice.

You do what you can to the absolute best of your human ability. And you see the progress, but you still really never feel like your head stays above water for more than a few minutes. And sometimes you sense that it's better not to stay above water for too long. It might give you too much time to look around and notice the difference between your life and those in the herd.  And some days it's just painful see it all around you.

Yeah, it's been that kind of day...

I feel like 90% of the time I roll with the punches pretty well. As I have said over and over, "It is what it is." I am so very grateful to be where we are today. It's such a better place than where we stood nearly 3 years ago when Gavin was diagnosed with cancer. Joy has reminded me a few times that even though I am grateful, I shouldn't expect to be immune to the fact that we were essentially hit by a semi-truck a few years ago. And it's hard not to feel the effects of that every now and again. And honestly, I don't think it would be healthy if I didn't feel it from time to time. So often I think I get caught up in simply doing all of the things that need to be done each day that I don't allow myself to feel the emotions that come along with our journey. And naturally, the emotions are many. It's part of being human. Especially the female type. ;)

On days like this, I know that it's best if I just curl up and talk honestly with God, knowing that He knows how I feel before I even tell him about it. I need to soak in some truth through the promises in Scripture instead of comparing my life to that of the herd.

Jeremiah 29:11-13
"For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me."

This reminds me that it doesn't really matter what seems to be going on with the herd. My life was planned before it started. And it has a purpose -- for good. Looking around at the herd isn't going to make me feel any better. In fact, I am certain that Satan uses the mirage of the herd's perfection to make me feel bummed out about life as we know it. And I know what I've been instructed to do when life starts weighing me down.

Mathew 11:28-30
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light."

And I know He comes through for me. Every time.  If I simply stop long enough to let Him help.

By the way, the picture chosen for this post is a my current favorite picture of Garrett. He's wearing a hat made out of newspaper comics that his preschool teacher made him on "wacky day." He's modeling my tennis shoes that are just a wee bit too big. And he's sporting the ultra stylish gold sunglasses. A modern day rocks star!! I put this picture as the background of my phone. So each time I got to unlock my phone, I see this face. He is pointing to his smile and it just reminds me to smile.

Even on the days I don't feel quite up to it.

Much love,

Grow, Gavin, Grow!!

2011-03-06T23:25:00.000-06:00

This is what happens when Gavin and Daddy end up in a doctor's exam room for over 5 minutes. Daddy makes art out of a glove. I had to take a picture of this one. A shark. Cute idea, don't you think?

So we went to see the endocrinologist on Friday. This is the doctor that is in charge of looking at a host of things for Gavin. All related to damage done from radiation and chemotherapy. The topic talked about the most right now is Gavin's growth. Or lack thereof. Depending on how you look at it. ;)

I like to look at it as growth. I am pretty sure the doctor thinks it's more in the "lack thereof" category. Gavin has grown a little less than 2 cm since November. Yes, it's growth. But it's nowhere near what he should be doing.

We'll reconvene with the endocrinologist in June to determine when and/or if we need to go ahead and start Gavin on growth hormone shots. I asked the doctor how much growth I needed to be praying for between now and June. He said that Gavin needs to grow about 8 cm in a year in order to catch up on growth that hasn't occurred in such a long time as well as just grow like he would have normally. We'd look at the pro-rated amount come June. If he's on pace for meeting 8 cm by November, we'll keep going without the hormones.

I loved how the consultation ended. The endocrinologist had told us that he's also a believer. And as he walked out the door, he said he'd be praying along with us that Gavin would keep growing.

Speaking of growth, I think Gavin's sprouting some new hair on the top of his head! The doctors would say Gavin shouldn't grow anymore hair this far out from treatment, but I believe otherwise. (Whole brain radiation can cause permanent hair loss for those of you wondering.) God knows how many hairs are on Gavin's sweet head. He created every single hair follicle. I know that if he created it, he can re-create it as well. And if Gavin ended up with a full head of hair, science would have a difficult time explaining it. God would easily get the credit. How awesome would that be?!?

By the way, I love Gavin's sweet hair. I think most cancer parents will say that they were so sad when their child's hair fell out, but that they soon grew to love just how kissable the soft, bald head became. While I still kiss Gavin's head like crazy, my heart breaks at the thought of people staring at Gavin for the rest of his life. And the continuous questions we get from complete strangers. Oh, how I would love for him to get a full head of hair!! So, I continue "the hair prayer." I do understand that perhaps it's not God's will for Gavin to have that much hair. And I know God will help me accept this and get over the stares if He wants Gavin's hair to stay the same. But until then, I will keep sharing my heart's desire with God in the form of "the hair prayer." (And be grateful that we're in a place that the growth of Gavin's hair even makes it on our prayer list!!!)

Thanks for praying for Gavin's growth. We love that you all keep up with us here on the blog. Thanks for stopping by.

Much love,

Bring On The Apps!

2011-03-01T12:08:00.001-06:00

As I mentioned in my last post, I love iPhone apps. I am known for bringing up the topic with friends to see what they've found that might make life more productive or waiting more entertaining for the kids. So, I've decided to write a post about the apps that I love.

First and foremost, I should say that I mostly seek out the free apps. I have only paid for 4 or 5 apps. It's not that I wouldn't pay for others, but I've not found others yet that I thought I just had to have. So 99% of the apps that I'll list here for you didn't cost me a dime. I can't say that they are all still free because those sort of things do change from time to time.

Favorite Kid Apps -- Plain ol' Fun

Gobble Gator
Paper Glider
Fit it!
Baby Piano
iXylophone
Doodle Buddy
Four In A Row
ABC Maze
Air Hockey
Matching Zoo
iDP Free
Scoops
Shape Builder
Toy Story 3 Memory Game
Shape Puzzle
Talking Tom Cat

Favorite Kid Apps - Educational

Bob Books (paid for the upgrade on this one)
Word Magic Lite
Sight Words Lite
1000 Sight Words Free
iFlash - Free (make your own flashcards)
Alphabet Car
Alphabet Tracing
iWrite Words (paid for the upgrade on this one too)
Kid Genius
Piggy Math
Sea Math
Bubble Spelling Free
Clock Master - Math Tappers
Match Words Free
Bubble Rhyming Free
Bob's Big Bug

Apps Mommy Loves

Words With Friends
Around Me
The Weather Channel
My Radar
Facebook
Bump
Hey Tell
Shazam
Pandora
KLTY-FM
4Music
Beat the Traffic
Cheap Gas!
Google Earth
Bubble Xplode
Sudoku Daily
Solitaire
iRewardChart (paid for this upgrade -- awesome! It's like a wonderful sticker chart for each child's behavior.)
Olive Tree Bible Reader
Webster's Dictionary
Redbox
Urban Spoon
D Recommends
iTriage
All Recipes
USA Today
Let Scan
Amazon.com
Amazon Price Check
Red Laser
Sale Price
Target
Walmart

So, what apps do you love? Please leave a comment and let us all know!

Much love,

The Fun Bag

2011-02-23T22:26:00.002-06:00

Ever since Gavin was diagnosed with cancer, we have spent quite a bit of time in waiting rooms. Early on in the game I figured out that I was going to have to come prepared. Just because we were stuck waiting didn't mean we couldn't be having fun. Or better yet -- learning! ;) So I came up with the fun bag.

Many times I would end up looking like a mule, especially if we were heading to the cancer clinic for a long day of chemotherapy. I'd have a bag for all of the essentials, the fun bag, my purse, some drinks and/or food, and something with more of my stuff (i.e. Bible, book, and laptop). It was a running joke at the cancer clinic in Plano. The Smiths are moving in!! We were known for the blue hand-me-down Little Tikes wagon our next door neighboors gave us years ago. Sometimes Gavin felt so awful he would ride in it. Other times, we used it just to haul our stuff around the hospital! The wagon came in real handy at the end of a long chemo day. Even if Gavin felt good enough to walk into the clinic in the morning, he would definitely want to ride back to the car. Wiped out from the chemo and nausea meds.

Okay, so back to the fun bag...

I started calling it that because that was all that was allowed to go into the bag. Fun things. Life was full of not-so-fun things. We needed something that was known for being fun. The items within the bag have changed over the years and the bag that we've used as the fun bag has changed as well. But the purpose never has.

Fun.

Now some may argue with me on that one because I sneak a whole lotta learning into that bag as well. I just try to make them FUN learning activities. And my kids like them! It isn't all that uncommon for Garrett and I to hang out on the carpet of the therapy clinic waiting room, working a puzzle or doing a phonics game I ~~made~~ printed out and laminated. If Garrett's going to spend a decent chunk of his life in a therapy waiting room, he might as well be stimulated at the same time, right?

The items within the fun bag are changed out on a regular basis. Here are some examples of what you might find in it though:

Puzzles
Memory games
Coloring books
Dry erase maze/counting/writing/phonics books
Sticker books
Plain ol' books
Nuts & bolts (for fine motor development)
Cars
Policeman/firefighter figures
Flashcards (letters/numbers/sightwords)
Leapster
Play doh (single color, very few tools, with a flat surface like a cookie sheet to work on)
Dominoes (especially the character types -- like Handy Manny)
Small wind up toys (like a kangaroo that does flips after you wind him up)

After I made the switch to an iPhone last fall, that became part of the waiting room entertainment as well. I have a number of apps that are specifically for the kids. Some just plain fun. Others are fun with a lot of learning mixed in. I won't get into the apps on this post. But, I promise it will come soon. I love to talk apps, so I'll want to know which ones you all love as well. ;)

So, if you find yourself frequently waiting, even if it's just in the carpool line with the younger kids, make a fun bag. It will make the time go by faster for everyone!!

Take a minute to comment and let us know what you keep in your fun bag!

Much love,

My Gratitude for the Possibility of Fat

2011-02-19T20:59:00.000-06:00

Gavin's MRI has come and gone. I popped in quickly yesterday between the neurosurgeon and the zoo to say we had received the good news called NED. No evidence of disease. So here I am to fill in additional details for those of you who are curious.

The MRI of the brain and spine is done every three months, so we already had that scheduled for Friday. The oncologist and neurosurgeon both said it looked great. The MRI of the pelvis was added a few days ago because of the asymmetry we had noticed on Gavin's hips/bottom. And it showed absolutely nothing. They had even marked the area so the radiologist could really check that area out good. Nothing was found. Of course, the oncologist was most concerned that it could be a tumor, but he was also looking for things like fluid that could be from Gavin's shunt or inflammation of some sort. Fortunately, the MRI showed none of these things.

So we don't really know what has caused the asymmetry. The neurosurgeon thought it looked odd as well. I asked the oncologist if he thought Gavin was just getting love handles and his body didn't remember how to store fat properly. He laughed and said that he never thought he would hear the words "Gavin" and "love handles" in the same sentence, but said it was possible. Perhaps he gained some weight quickly and his body didn't distribute it evenly. Given more time, maybe it will even out. I have never been happier about the possibility of fat!!

We'll wait to see what happens with this area. Gavin has gained a whopping pound and grown 0.3 cm since early January. And while some would say it is too small of a difference (even if measured in the same clinic) to say it counts, I'll take every partial centimeter I can get! I pray this boy's body is simply trying to grow, despite all of the odds. And it's just off to a rough start. ;)

Thank you all for your prayer support of Gavin. I am always blown away by the number of texts, blog comments, emails, and facebook messages I get on MRI days. You all have surrounded our family with love. And we'll never be able to adequately express our gratitude.

Much love,

NED

2011-02-18T13:09:00.001-06:00

MRI came back clear!!! No evidence of disease. Will post more info later. For now I will just praise God for my sweet boys while we enjoy the zoo!!!

Much love,

Verse of the Day

2011-02-18T09:23:00.001-06:00

2 Corinthians 5:7
For we live by believing and not by seeing.

This verse is today's mantra for me. I believe that God has always had Gavin in the palm of His hand. And no matter what the scan "sees" today, I believe God will still have Gavin in the palm of His hand. And that gives me a peace that this world simply cannot offer this mommy.

Gavin's scan is underway. My favorite MRI buddy, Garrett, is hanging out with me here at Children's. Sweet boy! When given the option to go to the zoo with good friends today, he said he wanted to come to the MRI instead.

I will post again after we learn the results of today's scan. Thank you for your continued prayers.

Much love,

New Concerns

2011-02-17T17:36:00.001-06:00

Gavin's MRI is tomorrow morning. This was scheduled as his regular scan that is done every 3 months. A couple of nights ago I discovered a large asymmety in his hip area. One side seemed to have a large area that almost seemed swollen. There was a small bruise with it, but he denied any pain. I contacted the oncologist and then emailed him a picture of the area. He agreed that is looked quite unusual and ordered a pelvic MRI to be done tomorrow as well. He said he doesn't know what is causing this, but that it did not appear to be due to new tumor growth in his spine. That was one of my fears because the physical therapist looked Gavin over yesterday and noticed that some of his lumbar vertebrae seemed shifted to the left. Another concern of mine is whether scoliosis has already started in his spine. Radiation to the spine can cause that. I think the best case scenario is that he is gaining weight and his body doesn't quite know what to do with it so it has made asymmetrical love handles. At any rate, we hope to figure it out very soon. I will post when we hear from the oncologist.

Much love,

6 Words I Will Never Get Tired Of Hearing

2011-02-14T21:33:00.000-06:00

Gavin said 6 words tonight at dinner that are music to my ears these days...

"May I have some more, please?"

And no, it's not his display of good manners that got my attention. It's the fact that he had eaten all of his first helping of dinner. And he actually wanted more. Now, I happened to be serving his favorite recipe of all time. That helped significantly.

Because Gavin hasn't really grown in at least a year and a half, he has very little appetite. Apparently, the production of growth hormone increases your appetite so that you'll eat enough to grow more. Yes, that's a wee bit simplified version of how the human body really functions. I'm sure of it. But you get the picture. Because it's highly likely that Gavin's body is producing little to no growth hormone from damage done to the pituitary gland during his radiation, he doesn't really get too hungry. So I love to hear him ask for more food. It's such a nice change of pace compared to our usual reminders to "keep eating" at each and every meal.

We held off on starting growth hormones. Originally, we were set to start the process in early January. Different oncologists say different things about how long a brain tumor survivor should wait after treatment is over until they get started with growth hormone shots. And there is some research (though not strong evidence yet) that suggests that growth hormones could act like fertilizer if any cancer cells remain in the body. To say that makes us a bit uneasy is an understatement.

We had talked it over with the dietician that we work with because her specialty is brain tumor patients. She suggested we try zinc supplements for awhile and talked about a number of patients that opted out of growth hormones, tried zinc, and are growing well now. So, I talked it over with the endocrinologist and we decided to give zinc a whirl for 6 months before starting the growth hormone route. It can't hurt anything and 6 months won't make a big difference in his overall growth.

I pray he grows without the growth hormone shots. Six shots a week until at least the age of 18 or 20 (and perhaps a lifetime) isn't super appealing. The potential risk of fertilizing tumor cells is even less appealing. And honestly, making the decision to start the hormone shots is just one more decision in this whole journey that I hate to have to make.

Tonight as Gavin was about to change into his pajamas I thought I noticed that his jeans were a little shorter than before. That hasn't happened in ages!! Garrett is actually catching up with Gavin quite quickly in height, which I would have never thought would happen since they are two years apart in age. (And it's totally messed up my plan to give Garrett so many hand-me-downs from Gavin!! But I'm over that.) At any rate, I thought his jeans seemed shorter. I didn't officially measure him. I am afraid I'm getting my hopes up. All because of those 6 little words spoken over dinner.

A girl can hope though, right?

And pray.

Won't you join me? I'd love for more prayer for for not only his growth (height & hair), but also for the following while you're at it:

A clear MRI this Friday (and forever, for that matter)
Cognitive protection from the late effects of chemo and radiation
Increased strength and stamina
Continued progress with his academics
Improved expressive and receptive language skills
Improved attention
Maintained confidence as he becomes more aware of his differences

And please send up lots of prayers for my sweet little friend, Rebecca Roeh. She's had a rough run lately, to say to the least.

Much love,

Just Another Texas "Snow" Day

2011-02-09T21:44:00.000-06:00

We had another day off from school today. Just enough ice arrived a little while before dawn this morning. I'm not sure who was more excited about it, the boys or me. ;) The boys and I have such a great time on these "snow days." They make for a cozy "jammie" days. Filled with learning and therapy, but still lots of fun. I have to admit, the recent snow days have brought out my inner teacher.

Today we were able to get in lots of fine motor practice when I had the boys make the valentines for their respective class parties. They both cut hearts that I had traced onto construction paper. Gavin copied each child's name onto the front of the hearts and wrote "Love, Gavin" on the back. Garrett traced each child's name and wrote "Garrett" on the back. I wrote the "Love," for each of his. They finished the valentines off with some glue and silver glitter. It was a glittery mess, but such a fun and rewarding way to get some good fine motor into the day.

The pictures below aren't actually from this "snow day" because the snow we received didn't cover the grass. I know the boys wish I had fun pics from the outdoors today. The ones from last week will have to suffice.

Garrett

Gavin

On a sadder note, a friend of mine from college, Whitney (Wood) Fleming, passed away yesterday. She had been awaiting a double lung transplant for cystic fibrosis. Please keep her family in your prayers. She left behind a husband and two young boys. Whitney was a blessing to everyone honored to know her.

And if you aren't already following the Roeh family, take some time to pray for sweet Rebecca. She's inpatient right now and having such a difficult time. Check out their blog for updates I have been writing for Joy.

Much love,

God's Perfect Timing

2011-02-07T11:37:00.004-06:00

Jeff and I have been flooded with updates about other brain tumor kids that we follow having absolutely horrid MRI reports lately. It seems like relapse or disease progression is rampant with nearly everyone around us. We have Gavin's MRI on February 18th. While I usually do quite well with "scanxiety," mine has been creeping back up in the last few days. I've been even more aware than usual that our life could change in an instant. That one MRI could send us back to square one, which in the AT/RT world, isn't a good thing. Limited options would make it all even scarier than it was the first time around.

So these negative, fearful thoughts have been swirling around in my mind, threatening to steal the joy of the here and now. And I've been praying to God to settle my mind, to increase my faith, and to give me the peace that I had before this recent storm of anxiety got started. And today, I know without a doubt that God responded. We learn best by repetition, so I think he used at least three ways to get my attention. He may have used more than that, but I wasn't only catching onto three today. :)

1. I made a new friend recently up at the clinic I take the boys to for therapy. She is a fellow Christian. The Beth Moore book I was reading sparked our conversation and we quickly learned that we had not met by chance. We exchanged numbers and met for lunch a week or so later. I hadn't talked to her in a little while. But she called today. She asked how Garrett was doing, knowing that we were going to go see his neurologist the last time we spoke. I updated her on that front and she asked how everything else was. She said that during her quiet time with God this morning my name came to her in a very strong way. She knew to pray for me and call to see what was up. I confirmed that God brought my name to her for a very specific reason and confessed my anxiety about the upcoming MRI. She was so sweet as she brought some relevant scripture to the conversation and then prayed specifically for me and our family before we got off the phone. To say that I am grateful to have faithful friends like this in my life in an understatement!

2. Garrett and I curled up on the couch to read from his favorite children's Bible that I had recently written about. While reading our third story Garrett fell asleep. (He was up past his bedtime watching the Super Bowl with us at a friend's house last night.) I almost stopped reading right after he fell asleep. But I felt prompted to read another story. And so I did. And as it turned out, it was the story of the Sermon on the Mount from Mathew 6 & 9 and Luke 12. That's the one where Jesus talks about worrying. He asks if birds worry about where they'll get their next meal. And He confirms that no, they don't. God knows what they need and feeds them. And then Jesus asks about the wildflowers. Where do they get their lovely clothes? Again, the flowers don't have to worry. God knows their needs and takes care of them. And then Jesus goes on to talk about the fact that God loves us more than birds or flowers. He doesn't want his children to worry. He loves to look after us.

Timely? I think so.

3. After reading about the Sermon on the Mount, I knew God was speaking to me. Thinking He might have more to say, I went on and read another story from the children's Bible even though Garrett was sound asleep by then. And I am glad I did. For that story happened to be about the storm on the lake from Mathew 8 and Mark 4. Jesus and his disciples were in a boat on a lake. Jesus fell asleep in the boat and a horrible storm came. The disciples woke Jesus up, scared of the storm, and begging for help. Jesus stood up and with one word stopped the storm. And then Jesus turned to his friends and asked why they were scared. Had they forgotten who He was? Did they believe their fears, instead of Him?

I sat in silence, amazed at how God uses others and His divine Word to speak to His children about their individual needs with such perfect timing. I felt peace sweep over me as I closed the Bible. And I knew right then that today's provision was meant to be shared. So I came here to write it down while it was still fresh on my mind and Garrett was still snoozing on the couch.

I am blessed beyond measure, despite the troubles this earthly life might bring. God knows our needs. He knows what our upcoming MRI will look like. And my anxiety about such things will not change the outcome. I will pray to Him that the MRI is pristine. I will trust Him whether it is or isn't. I will thank Him for the lessons I continue to learn because of it all. And I will honor the miracle of Gavin's life by sharing God's blessings with you all here on this blog.

I pray that all who read this blog would look for the ways God might be speaking to them today. I'm certain that He speaks to each of us every single day of our life. It's up to us to pay attention and listen to His voice.

Much love,

Forced Vacation

2011-02-03T15:29:00.003-06:00

North Texas was hit by a ice storm Monday night. We've been iced in ever since. And it's been absolutely lovely. :)

No school. No therapy. No schedule. Like I said, absolutely lovely.

For once, I can actually accomplish all of the homework for school, occupational, physical, speech and vision therapy that I am supposed to do with Gavin each day. And we still have plenty of time to play.

I know cabin fever is rampant for many around me. Not here in Smithville. I am relishing the stillness the ice has brought our family this week. It's as if God knew that my boys could use an unexpected break from it all.

And the ice made me so grateful that Gavin is not in treatment for cancer anymore. I prayed for those in the area that are still in their battle. I can only imagine how stressed I would have been if this ice would have hit when Gavin was on chemotherapy. Worrying about driving all the way to Children's in Dallas if Gavin spiked a fever or we were due for chemo.

Gavin had a difficult time sleeping last night. As Jeff and I were about to go to bed, we could hear Gavin tossing and turning, making noises. The kind of noises that he used to make when he was in pain. Immediately, I got worried. Afraid that his head hurt. Or his back hurt. That tumors in his brain or spine had returned. (I wish I could say that the fear doesn't creep in at moments like that. But, it does.) I went up to check on him. He had a fever. My guess is low grade. Not quite 101, so I didn't even bust out the thermometer. I got really good at knowing what 101.5 felt like from the days when Gavin was on treatment. Kind of sad that I've become a human thermometer, but it's a little handy. ;)

Anyway, Gavin said nothing hurt or felt funny. He just said he had a fever. Not sure why. I gave him some Tylenol and he settled back to sleep. I went back downstairs and updated Jeff. We almost laughed at how sad it is when we're relieved to find a fever. Something viral or treatable with an antibiotic. Normal stuff. Today Gavin seems fine. So I am especially happy about that. He's enjoying yet another "jammie day" here at home.

On a sadder note, fellow brain tumor warrior - Kate McRae - received news earlier this week that she had two new areas (likely cancer) on her MRI. The family is devastated, of course. It's heartbreaking to read about how sweet little Kate is asking her mom why Jesus hasn't healed her yet and saying that she doesn't want to go to heaven without her mom. Please storm heaven on Kate's behalf. And please go to her caringbridge site to let them know you are praying for them. www.caringbridge.org/visit/mcraekate. Thank you for praying for others like you have done for Gavin.

You all stay warm!

Much love,

Asleep On The Stairs

2011-01-27T22:40:00.006-06:00

Garrett has a cold. He's pretty cute when he's sick. He's cuddly by nature, but when he gets sick he really wants to cuddle. Today we built a fire, cuddled up under a blanket, and read about 10 stories from a children's Bible that we got from Garrett's friend, Jackson. I know I told you all I liked a different children's Bible. And I still do. But this one rocks! Garrett has always loved to read Bible stories, but he's even more into it now that we got this Bible. It's called The Jesus Storybook Bible: Every story whispers his name. I especially enjoy the fact that at the end of each Old Testament story, the authors point toward how it relates to the coming of Jesus Christ. I couldn't help but share my new favorite! Check it out.

In case you are curious about the above picture, Garrett doesn't always sleep on the stairs. One night a couple of weeks ago, Jeff and I were sitting in the living room after the boys had already gone to bed. I told Jeff I thought I could hear Garrett breathing. Garrett does some snoring here and there, but this was simply loud breathing. Our house is no mansion, but his room is far enough upstairs that I shouldn't have been able to hear him breathing. I walked up the stairs to find him sleeping in the middle of the upper flight. Talk about dangerous! I think he must have started to come down to see us and then decided to just hang out there for awhile. And then he fell asleep. On the stairs. Using his bear as a pillow. Cute.

I couldn't help but take a picture of the scene. Know that Jeff was standing right there the whole time. Once I found Garrett sleeping on the stairs, I wouldn't have just left him there to roll on down. That's why they call me "Safety Stacie." ;)

And while I'm writing about Garrett, I should say that we found out today that he will see the neuromuscular specialist in the middle of March. Sooner than expected, so I was a bit surprised. I am hoping they just don't have much of a wait and not that the doctor felt that he was that great of a priority. Our neurologist had prepared us for a 4-5 month wait. The scheduler told me last week that all of the referrals are looked over by the doctor prior to being scheduled. I'll try not to read too much into that though.

Hope you all have a great weekend.

Much love,

Childlike Faith

2011-01-24T13:30:00.005-06:00

When one of my children mentions cancer during their play, it always shocks me. I don't know why. After all, cancer has made a big impact on our family. But, it still catches me off guard when they are just playing away and suddenly mention cancer.

It happened again today. This time with Garrett. We were playing with legos and he was building a tower-like thing that he said was a person. We were being silly and having a grand old time. And then he said it. In the most innocent and nonchalant manner.

"And this hole right here, Mommy. That's from where he had cancer."

Silence. I think it was only for a second or so, but it felt longer. I stared at the hole he was pointing to. And then I looked up at Garrett and tried to play it cool as I said, "Oh wow! He had cancer?"

"Uh huh."

I nodded my head for a moment, just waiting to see if he added anything more. And he did.

"And this hole here, that's where they gave him more blood."

Of course. A transfusion. That's what all 4 year olds think about while building towers with legos, right? I said, "I see. Well, is he all better now or does he still have cancer?"

Garrett didn't skip a beat as he smiled at me. "No. The cancer's all gone."

And that was it. Garrett moved on to talk about how I should try to build my tower to look just like his. And so I did. Our lego play continued for quite awhile longer. Cancer-free.

While it breaks my heart that my children are still processing what cancer has done to their lives, I love that they feel comfortable enough to chat about it here and there. And it gave me peace to hear Garrett talk about the cancer being gone. It was clear that he didn't fear more cancer.

Childlike faith. We should all have it.

Much love,

A Decade

2011-01-20T13:01:00.006-06:00

Yesterday marked 10 years since Jeff and I got married in Runaway Bay, Jamaica. There's something about the 10 year mark that seems to be a big deal. And it makes you seem so much older as well. ;)

Most wedding vows include something like "in sickness and in health." I know our vows did. That's very easy to say on a wedding day when life seems perfect. It's harder to play out when life seems to be falling apart because of a beast called cancer. The divorce rate for parents that have a child with cancer is something insane, like 85 - 90%. It's heartbreaking to think about. And I am so glad we are not in that group.

Going through the pediatric cancer process is extremely difficult on every facet of life. And I think that most cancer parents will say that their marriage has suffered a few hits through it all. But, I feel so blessed that God led me to Jeff. While we didn't know that "in sickness and in health" would include Gavin's cancer, God did. And I believe he was preparing us back then for the storms that we would one day face.

On the day we said, "I do," it rained. That's not that unusual in Jamaica. It stopped raining a little while before we got married and was perfect during our nuptials. It started raining on our carriage ride, but we were covered. It stopped raining before we took the rest of our wedding pictures. And it made for the most beautiful rainbow in the background of one of our beach pictures. If I can figure out how to scan the picture, I'll post it sometime.

We've had way more sun than storms during our decade of marriage. And even during the stormy parts of life, we have managed to find some sun. We make a good team. And I can't imagine facing the sunny or stormy days of life with anyone else but Jeff.

All my love to you, Jeff!! Happy Anniversary!!

Verse Of The Day

2011-01-13T23:12:00.004-06:00

It's been a heavy week. From the appointment with Garrett's neurologist to finding out about a sorority sister that is on life support awaiting a double lung transplant, it's just been heavy. Another friend's sister was recently diagnosed with cervical cancer. All three of Joy's little girls are all having a hard time because of the mitochondrial disease that has invaded their family. A friend from my Bible study recently found a lump in her breast. And the list goes on...

I continue to find peace when I seek out God's word. His truth. His promises. I told the girls in my Bible study last night that I wasn't quite sure if I was just feeling peace or if I was numb, like some form of denial. Today I am positive that I feel peace.

And it's because of Him, not me. I am so grateful.

A scripture (set to music on a CD Jeff's sister gave to me last weekend) touched me today like it had not before. I felt it was only appropriate to share it with you all as well.

Zephaniah 3:17
The Lord your God is with you.
He is mighty to save.
He will take great delight in you.
He will quiet you with His love.
He will rejoice over you with singing.

Isn't that wonderful!?!

Yes, God is with me.
Each and every day.
Through the good and the bad.
And even when I ignore Him.

I do not know what His plan is,
but I know he is mighty to save.
He is perfectly capable of healing it all.
And he wants me to ask.
So I boldly bring my requests before Him.

He quietly reminds me that He is in control.
And that none of my worrying adds even a day to my life.
A life lived in peace through Him is much more worthy
Than a life lived in stress about all of life's possibilities.

And as I sing and pray to Him, I feel the load lighten
Because I was never meant to carry it all alone.

Much love,

Neuro Update for Garrett

2011-01-10T21:19:00.011-06:00

While this boy's greatest concern is whether or not the snow will still be there when he wakes up in the morning, Jeff and I are wrestling with new information gleaned from the neurologist. Today was Garrett's regularly scheduled appointment with his neurologist.

For those of you that haven't followed us for all that long, I'll give you a little background information. Garrett had some developmental delays that we noted during his first year of life. He began physical therapy when he was about 11 months old and has been in it ever since. His physical therapist recommended that we consult with a neurologist awhile into therapy because she was noting just enough abnormalities that made her concerned. The neurologist confirmed that Garrett had hypotonia (low muscle tone). He also told us that although he didn't know what the underlying cause was for the hypotonia, there was a diagnosis to be had. Gavin was in the midst of chemotherapy during all of this, so to say it was a little shocking is an understatement. The neurologist ordered some genetic testing and and EMG, which ruled out some of the bigger things, like muscular dystrophy and spinal muscular atrophy. However, there is a slew of other things that remain on the differential diagnosis list. And no, I don't know what all is on the list. I know a couple. And it's enough to make me not really want to know the rest.

At our last neurology consultation, we had discussed doing a muscle biopsy on Garrett's leg. That would give us a label, but as the neurologist explained to us, none of the things we were looking for could be treated with anything other than physical therapy at this point. We were already doing therapy and Garrett was progressing nicely. So, we all decided a muscle biopsy didn't make much sense yet.

About 4 or 6 weeks ago, Garrett woke up and was quite upset. He was having difficulty walking and just wanted to lie down. He was crying and saying that he couldn't walk because his legs weren't working quite right. Gavin kept saying, "I think we should take him to the hospital guys!" Jeff and I tried to keep them all calm, but as our eyes met I could tell we were both having the same panicked thoughts. Could this be the first sign of the possible regression the neurologist had talked about?!? However, the episode resolved within 10 minutes or so. We were puzzled, but he was completely fine afterwards. So we thought maybe it was something a bit more normal. However, a milder version of that same sort of thing happened about a week or so ago. I was again happy that he went back to normal quickly, but knew this was something we needed to talk to the neurologist about.

Well, today was that talk. And as much as the heart of this Mom would have loved to have heard the neurologist say he wasn't concerned, he said it was time we investigated this all a bit further. So, he is referring us on to a neuromuscular specialist here in Dallas. She's a very busy doctor, so he warned that it will likely take 4-5 months before Garrett sees her. But, he feels that this is not an emergent issue and that a wait like that is okay.

I have to say that listening to a doctor share his thoughts about symptoms that may significantly impact my child's future is becoming all too familiar. Garrett was sitting there playing with his Leapster that we got him for his birthday, seemingly oblivious to the conversation at hand. I tried to code questions in a manner that Garrett wouldn't quite understand, using words like "mortality" instead of "death". Yet, I know that Garrett understood more of that appointment that I would like to think he did. Looking back on how things went with Gavin, I now realize how much more "in the know" he was than I ever really wanted him to be. And that makes me sad.

I considered not even mentioning today's appointment on the blog. Honestly, a large part of me would love to pretend like the potential of more devastating news doesn't even exist. But, it's just not the truth. So, I'm choosing to face it head on and with hope. And I know that will be easier done if I am honest with you all so that you can best know how to lift our family up in prayer.

I am determined to trust God in this period of the unknown because it's not unknown to Him. I believe with all of my heart that nothing touches this family that has not first been sifted through God's hands. And good or bad, He has allowed it to come our way. And with His guidance, He will carry us through. And I will do my best to bring Him glory regardless of how life goes.

Here are a few scriptures that bring peace to me when I am tempted to feel troubled.

John 14:27
I am leaving you with a gift - peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be toubled or afraid.

Psalm 68:19
Praise the Lord; praise God our savior! For each day He carries us in His arms.

Romans 11:36
For from Him and through Him and to Him are all things. To Him be the glory forever. Amen.

John 1:5
The light shines in the darkness, and the darkness can never extinguish it.

Psalm 55:22
Give your burdens to the Lord, and He will take care of you. He will not permit the godly to slip and fall.

Mathew 28:20
"...And be sure of this: I am with you always, even to the end of the age."

Thank you for praying for my sweet Garrett. You will never know how much your love and faithfulness means to this Mommy.

Much love,

Four

2011-01-06T07:15:00.001-06:00

Four years ago, God blessed us with the birth of our little Garrett and the child has brought smiles to our faces ever since. Garrett is a special kid, who has a very sweet and loving personality. He is a deep thinker, one who ponders life more than most children his age. He's an extremely happy child. He is generous with his hugs and his belongings. Garrett brings me great joy in this life and I am very proud to call him my son.

Happy birthday, sweet Garrett!! I love you so very much!

Mommy

Perhaps

2011-01-03T22:30:00.000-06:00

Happy New Year, friends. I hope you rang it in in fine fashion. I always think about the New Year's Eve I spent at Children's with Gavin. Our hotel room (oops...I mean HOSPITAL room) overlooked the helicopter landing pad for Parkland Hospital. That's a county hospital in Dallas that is well known for its trauma care. I will never forget that night because I didn't get a wink of sleep. Not so much because my sweet Gavin was having a horrible time. But because I heard helicopters coming and going to Parkland all night long. I feared it was patients urgently being transferred to Parkland because of drunk driving accidents. And my theory was confirmed by one of the oncologists I spoke to the next morning. Apparently, NYE is always a mad house at Parkland. Sad, but true. I don't think I'll ever view that night the same way again.

On another note, we were in San Antonio for part of last week. Jeff and his dad met up down there to cheer Oklahoma State on to their Alamo Bowl victory. (Go Cowboys!!) The boys and I were invited along for some family fun.

I took Gavin & Garrett to Six Flags while the bigger boys were making their way to the Alamo Bowl. Garrett, who fears dressed up characters asked to get his picture taken with Tweety Bird. Very cute. Gavin, who usually wants his picture taken with the characters, wanted nothing to do with them. It must have been Opposite Day. Does that bring back memories for anyone else? ;)

The next day we went to Sea World. With the rest of Texas. Very crowded. Not as fun.

And on our way out of town we went to Morgan's Wonderland, which is coined as "a special place for special friends." It's a neat place that is designed to accommodate children with a wide variety of special needs. We visited it the weekend after Thanksgiving for the first time. We had such a good time we decided to go back again.

I felt it last time we were there and I felt it again this time. The pull between a level of denial and our reality. Here's how it works. We get inside the park. I see other children with needs that are apparent from a single glance. (No staring. That's my rule.)And then I start to think that we shouldn't be at such a park because we don't belong there. Like we're robbing the park that is supposed to be for children with some sort of special need. Because our child doesn't have special needs.

Yeah. I really try to convince myself of it for a few seconds. Strange. I know. And many may judge me for even writing it. But, I'll dare to throw my honesty out on the table regardless.

I find myself loving winter because winter hats conceal hearing aids and a mostly bald head. Gavin blends more easily in the winter. And I don't have to see the stares. The stares that he has to notice as well. Even if he hasn't started talking about it yet. The stares that break a parent's heart. The stares that I try to pretend like I don't even see, but I really do. The stares of mostly well-meaning strangers. The people that are just curious and concerned about a little boy who has clearly been affected by cancer. The continuous reminder that while we are blessed to have Gavin here, the reality is that cancer changed everything for him back in 2008.

But at Morgan's Wonderland, there are very few stares. Hat or no hat. My theory? Most of the people there deal with the heartache of seeing strangers stare at their beautifully different child. And they know how that feels. So, they're just not going to do that to other people. It's a perspective that is difficult to teach the person who hasn't lived it.

But, perhaps my honesty about it might start the ripple effect of change in that department.

Perhaps.

Food for thought. Try it on for size for awhile. Let me know how it fits. ;)

I love you all for continuing to drop in and see what's new in Smithville. Have a good week.

Much love,

I Heart Pics

2010-12-28T22:44:00.010-06:00

I love pictures. I may not be the world's best photographer, but I love to capture life in pictures. I have been horrible at getting the pictures from the camera to the computer and from the computer to the blog or frames. Hence, my New Year's resolution. ;)

Tonight I was going through some pics from the last couple of months while backing up my laptop. The following ones just made me smile, so I thought I would share.

Garrett after therapeutic horseback riding. He rode on Eeyore and Tigger this fall.

Gavin & Snickers, his horse at therapeutic horseback riding this fall.

Ornaments made by Gavin...shown before he hung them on the tree.

Christmas crafts at Aunt Alyssa's house.

Gavin & Mommy -- at a family bounce house party

Daddy & Gavin at the same party

Daddy & Garrett -- two peas in a pod

Gavin & Mommy -- smiling & looking at the camera (super bonus!)

Giggles by Garrett

Gavin overlooking Hill Country in San Antonio

Daddy & Gavin - hand in hand. I love shots like this one.

My partner in crime. ;)

Gavin driving a jeep.

Watch This

2010-12-27T13:12:00.003-06:00

Keegan Harrison is a special little guy we met at the therapy clinic. His mom is someone I've enjoyed getting to know better. Keegan's story is very unique. He received a heart transplant when he was only 5 days old. And last week, his parents met the parents of the little guy that died, but gave Keegan life. Click on this link to get over to Keegan's blog and watch this video. Thank me later...

http://keeganh.blogspot.com/2010/12/link-to-news-story.html

Much love,

Merry Christmas From Smithville!!

2010-12-23T23:12:00.008-06:00

I'd love to say that my Christmas cards are on the way. Unfortunately, I'd be lying. The truth is that although we are in a much better place this year as compared to more recent years, I still don't have my act together. And yes, it drives me crazy.

I love Christmas cards. It is so much fun to make them and send them out. And I get such joy out of checking for new cards each day in the mail. So, I absolutely HATE that I didn't do cards. But I am working on getting over it. In an attempt to compensate, I'm posting the pictures I would have picked from to put on the card.

Merry Christmas from our family to yours!!

May the JOY we find in Christmas remind us

of the ONE REASON we have to celebrate.

My Little Shepherd

2010-12-21T21:52:00.005-06:00

I hope that this post finds you all enjoying the holiday season. I know firsthand how easy it is to become overwhelmed with the to-do list that seems extra long during this time of the year. Our situation has brought about many trials and will always make our day-to-day life quite different than the average family.

However, there are a number of gifts that go along with it all. And I think a large dose of perspective is one of the things God grants to those along this path of ours, if we slow down enough to grasp it. Let me give you an example.

Gavin's kindergarten class put on a Christmas program, depicting the nativity scene. Gavin played a shepherd. Performing in front of people is pretty well terrifying for little Gavin, but I thought he did pretty good. Much better compared to his preschool graduation anyway. He looked super cute in his little costume and at this age, I think that's what's most important. ;)

The class performed the same program earlier last week for the senior adults and staff in our church. While I was not there for that performance, I received an email from someone that was. And it was just what I needed to read this season. Here is what she wrote:

"I cannot tell you all of the things I was feeling as a precious shepherd with very little hair, glasses and hearing aids stepped up to see Baby Jesus. He sang with all of his heart. I can’t imagine that anything else will touch my heart as much as this did this Christmas season. All I could think was what a miracle that shepherd was and the fact that it was all due to the little baby that was born in a manger so many years ago."

Can I get a collective AMEN?!? :) What a wonderful perspective she had as she watched the program! I am so grateful that Gavin's story continues to remind people of the truth of Jesus Christ. It has been amazing to hear from you all that keep up with Gavin and have felt changed because of all of this. Some people I knew already. Many I have never met before. All have a common thread. Gavin has brought them closer to Jesus.

I've said it all along. I don't think God caused Gavin's cancer. However, I am certain that nothing touches my son that has not first been sifted through the hands of God. And I believe that God allowed Gavin to have cancer because He has the luxury of seeing the bigger picture. And while suffering was inevitable and the future is unknown, Gavin's life has carried far more weight in its short 6 years than I could have ever dreamed of when he was born. Sure, it would have been easier on all of us if cancer hadn't been a part of our lives. But, Jesus never promised an easy life. He did promise eternal life and a life not lived alone, if we would chose to let Him travel along beside us.

Merry Christmas!

Much love,

Honest Abe

2010-12-18T00:07:00.004-06:00

It's been entirely too long since I updated the blog. So sorry. Just thought I'd warm up my writing again by popping in to share a couple of funny quotes from Garrett this week.

The other day he and Gavin were experimenting with flushing things down the toilet. I'm sure it is some sort of male rite of passage. I recall my mom talking about toddler twins that lived by them before I was born. The boys kept flushing bars of soap down the toilet! Fortunately for me, my boys were simply flushing down imaginary bugs that they'd "killed" with a tissue. I sternly told them to quit flushing things down, afraid the flushing frenzy might escalate to bigger items. A few minutes later, I heard flushing again. I called them into the room and asked who had flushed the toilet. Gavin quickly said it was Garrett. Garrett shot Gavin a super mean look and said, "Don't tell her the truth!! Who made you the boss?!?" (How's that for a confession?)

A day or so later, Garrett and I had to run an errand while Gavin was at school. As we got out of the car, he put on a hat. He quickly turned around to show me his changed wardrobe and proudly said, "I look handsome, you know." I couldn't help but laugh as I agreed with him. ;)

Promising to update more again soon. Hoping you all are doing well. Thanks for checking in.

Much love,

Pray For Landry Robinson

2010-12-04T21:35:00.002-06:00

Hello, dear friends. I know that you have been faithful to lift my son up before the Lord for healing. I hope that you will also do the same for another sweet child.

Landry Robinson

You can find her link by clicking HERE or scrolling down to find her name on the left of my blog, under the heading "Pray for These."

Landry is a sweet child from Abilene, Texas. She finished treatment last year for another type of brain tumor and has been doing great. However, her regularly scheduled MRI the other day revealed new tumor growth in her brain. Further testing was done on Friday and they have an appointment with their oncologist early this coming week to discuss treatment options. Please visit her page and let the family know that Gavin's Guardians are also working hard to "guard" Landry's precious life as well.

While I have not met Landry personally, I keep in touch with her mother. Landry's parents have followed Gavin's journey closely as well. They stayed in the same condo we did down in Houston during radiation. I feel connected to them in a way that I just can't explain. And my heart breaks for them. News like this is not welcome any time of the year. But, I know getting news like this right before Christmas must make it even more difficult.

Thank you for being so faithful with the lives of these children. So young. So innocent. And yet so in need of our prayers.

Much love,

Ty's Toys

2010-11-24T20:50:00.004-06:00

Most of you know that one my favorite people in this world is a friend named Toni Nordstrom. (Love you, girl!) She and I met because our boys were both getting radiation down at MD Anderson at the same time. Waiting room buddies for awhile. Friends for life.

It has been a little over a year since Toni's little boy, Ty, went on to be with the Lord. He would have turned 8 this December. As you can imagine, this is a difficult time for Ty's family. But I love what Toni, her husband (Lyle), and younger son (Aiden) are doing to honor Ty this Christmas. And I want to personally invite you to help her as she honors Ty's life through Ty's Toys. Below is the post Toni recently wrote about the project on Ty's CarePage. Let's help make Ty's Toys a huge success!

~~~~~~~~~~~~~~~~~~~
The Holidays are approaching fast and I am struggling with trying to find any “joy” during these difficult times. While I struggle with not having my child here to celebrate with, many pediatric cancer families are overwhelmed with thoughts of how they are financially going to provide their children with the holiday they desire. Pediatric cancer is financially devastating at any time of the year but is especially hard during the holidays. How are they going to afford the extra cost of groceries for those holiday dinners, how are they going to afford to buy presents for their “ill” child and the siblings that constantly feel left out or neglected? Often one parent has had to give up their job in order to meet the high demands of taking care of a child with cancer. How are they going to achieve this when they are used to having two incomes and now only have one? Not only are they down to one income but the cost of treatment has left them with ever mounting medical bills, medical bills that have made meeting ordinary bills like the mortgage payment, electric bill, grocery bill and the cost of fuel to travel for treatment a struggle. How are these parents going to be able to provide a special holiday season for their children?

During December of 2008 we wanted to impress upon Ty that despite his illness he was fortunate to have a family that loves him and is able to meet not only his needs but also his “heart’s content”. We wanted him to understand that there were boys and girls who had loving families but their mommies and daddies weren’t financially able to provide them with many gifts. That year we took Ty out shopping so that he could “purchase” gifts for those children who were not as fortunate as he was. Whether or not he truly understood the full meaning of this small gesture, we were very proud of him when he helped deliver the wagons full of toys to the H/O playroom. With Ty passing so close to the Holidays last year, we were not able to continue that tradition last year. However, this year we are planning to continue on with this tradition as a small way for us to honor Ty.

This is where we are asking for your help. We would love for you to help us honor Ty by contributing to what we would lovingly like to call “TY’S TOYS”! The goal of Ty's Toys is to be able to provide families with the means to a Holiday dinner, Christmas gifts not only for the children who are fighting this disease but also the siblings who don't understand why their lives have suddenly changed so much.

If you would like to join us in making Ty’s Toys happen, Cooks Children Hospital has provided us with the following donations “Wish List”:

Teen Items :
Current DVDs (no R ratings) - Wii Games - iPod shuffles - iTunes gift cards -Craft Kits -Model Cars – Puzzle Books - Current CDs - 250 or 500 piece puzzles - Make-up & Nail Kits
Gift Cards (BIGGEST TEEN NEED) (Target, Old Navy, Best Buy, Game Stop, Wal-Mart, Bath & Body Works)

General Toys & Needs:
Lego building sets - Lego “Bionicle” building Sets - 24 piece puzzles - 63 piece puzzles - 100 piece puzzles - Wooden Puzzles - Fisher Price Medical Kits - Fisher Price “Little People” Toys - Playing Cards - Uno Card Games - Magna Doodle Boards - Board Games (Please NO Candyland or Chutes & Ladders) -Barbie Dolls - Action Figures

Infant Items:
Rattles & handheld Toys - Light up & Musical Toys - Clothing (Preemie to 5T) - Board Books - Bumbo Seats - Boppy Pillows & pillow covers - Baby Silverware - Teething rings

Distraction & Prize Items:
Matchbox & Hotwheels Cars - “I Spy” or “Look & Find” Books - No-spill Bubble Tumblers - Portable CD Players - Portable DVD Players - iTouches

Craft Items:
Scissors - “Fuzzy” Posters & projects - Coloring & Puzzle Books - Sticker Books - Markers - Craft Kits - Playdoh

Donation Guidelines:
- All donated items MUST be new. This is important since many children have illnesses that make them more susceptible to germs.
- Please do not gift wrap any items.
- Since we are unsure of the beliefs of each family, we do not distribute toys with a theme that may be perceived as violent (guns, swords, bows and arrows, etc.) or any items with any religious content.
- We only use media items that have ratings for all age groups (G or PG movies, E video games).
- The following may NOT be included in donations: latex balloons, food or candy

*** Donations can be sent directly to The Nordstrom Family at 7017 Springwater Ave, Abilene, TX 79606 ***

We plan to gather all of these donations and present "Ty's Toys" to Cooks before the holiday season arrives. With that goal in mind, we ask that if you plan to donate, your donation arrives to us prior to December 15th.

We hope that this year you can help us keep Ty's spirit alive not only in our hearts but all of those who loved him!

We are so grateful for your continued support and prayers!
~~~~~~~~~~~~~~

Much love,

Overheard

2010-11-24T10:00:00.001-06:00

Gavin: Baby Doggie is turning 5 soon.

Me: Oh, really? He's getting so old!

Gavin: No, 5 isn't old. 25 is old.

I guess at 33 I'm officially over the hill!

Much love,

MRI Results

2010-11-23T14:50:00.002-06:00

Just spoke with Gavin's oncologist. No evidence of disease on today's MRI. If that's not something to be thankful for, I don't know what is! Thank you for your prayers!

Today Show Segment - Child Life

2010-11-22T21:36:00.001-06:00

If you have read this blog long at all, you know that I love child life specialists. We know two very special ones at Children's Medical Center that have been an integral part of making Gavin's experience with cancer as positive as possible.

Two men told me about a Today Show segment that aired this morning about what child life specialists do at St. Jude Children's Research Hospital. They both went on about how great the segment was. I figured if two men (no offense, guys!) are getting that worked up about it, it must be worth a look. I watched it and agreed. It was worth sharing. Take a peek. Just don't forget to mute the music at the bottom of the blog before you do. :)

Thanks and Giving campaign Campaign news

The Juggling Act

2010-11-21T22:32:00.007-06:00

It's that time again. Gavin has his MRI on Tuesday. We typically find out the results that same day. So, I will post here as soon as I can. Of course, we're praying for another report of "NED." That means "no evidence of disease." I'd love for that result to be "cured," but this is as close as we come.

I don't get the true "scanxiety" that I have had in the past. Reminders of the MRI are actually good for my perspective. For even on my most difficult day, the thought of an upcoming MRI reminds me of our reality. That we're really only one scan away from being in this boat of "surviving" to back into the boat of "fighting." And that anything I am currently stressed out about really wouldn't matter if the doctor came in and told me that Gavin had new tumor growth.

Sobering, to say the least.

I've been working hard to balance my emotions. On one hand, I am so utterly grateful that we still have Gavin. Sometimes it catches my breath at the most unexpected times. I see him laughing with a friend. I see him snuggling with his daddy. I see him playing with his brother. I see him smiling at me. I see him. And I know that it's a very special thing that I still see him. He is here and I am blessed because of it.

On the other hand, I am overwhelmed by the toll that surviving such an aggressive cancer has had on his sweet life. I know that God has a plan for Gavin. But I'd be lying if I said the human in me isn't sad at times. Sad that Gavin's life as we knew it took a sharp turn in 2008. Sad that he endured more in less than 2 years than most people do in their entire life. Sad that he physically can't do what his friends can do. Sad that kindergarten has to be such a struggle. Sad that another little girl was asking her mother, "Why ain't he got no hair??" in a much louder volume than I could honestly bear to hear. Sad that he's not growing. Sad that a lack of strength and motor planning makes even learning to write his own name a very difficult thing. Sad that he needs hearing aids. Sad that his life consists of less play and more therapy.

I've always tried to say, "It is what it is." I guess it's my way of accepting what we've been given and moving on. For the most part I think I do a decent job of moving forward with a smile on my face. But this past week I had a harder time. I may have been smiling on the outside, for those that saw me. But inside was an emotional tug-of-war. It was like there was a battle between gratitude and stress.

There is always so much that I should get done with Gavin on any given day. Kindergarten brings its homework. And then some because of how difficult kindergarten has been for Gavin. Physical therapy brings its homework. Occupational therapy brings its homework. Speech therapy brings its homework. We do what we can in all of the areas. And trust me, being a Speech-Language Pathologist myself, I'm pretty big on following through on home programs! But at the end of the day I still always feel exhausted, knowing that so much more was left on the list that people expect me to implement each day with this child. But, he has to be given enough time to simply be.

I know that there are many people that read this blog that can relate to what I am saying. Not because their child is signed up for soccer, football, t-ball, piano, gymnastics, art, spanish, and underwater basket weaving -- at the same time. But because they know the juggling act. And the weight it brings with it. It's not something we talk about a lot. It's much easier to appear strong for all of those that are looking at us. It's not something we gripe about a lot. We can't because we know all too well how blessed we are to have a child still here to deal with the after effects of cancer. And we know that we're really just one scan away from feeling like that juggling act was actually a pretty good gig. And that we'd give anything to just go back to the business of trying to fit all of the therapy and school work into a day.

And while I'd love to wrap this post up with a pretty red bow-like version of a happy ending, I can't. But, I will say that I try to face just one day at a time. And to give each day over to God. Easier said than done or I probably wouldn't have written this post, right? ;) Thankfully, I'm still a work in progress. And He is a very patient God.

Thank you for your continued prayers. And thank you for letting me be honest here about life in Smithville.

Much love,

Nursery Rhyme Fun

2010-11-20T22:54:00.005-06:00

I had mentioned awhile back that the boys dressed up like nursery rhyme characters for their school. And I mentioned posting pictures soon. Clearly, I'm not doing a good job of posting pictures "soon" because it's been weeks and they're just now coming. Please forgive me. :)

Gavin dressed up like "This Old Man." The thinned hair actually came in handy for this one. I made a beard by hot gluing a bunch of cotton balls to a hospital mask we had leftover from the good ol' days. He used a plastic hoe as a cane. We picked a plaid shirt because it seemed most like an old man to us. I wish I would have had him do his old man walk for a video.

"The dog that laughed to see such sport" (Gavin's friend, Luke) & "This Old Man" (Gavin)

Garrett and his friend, Nicole, dressed up like Jack & Jill. We had shirts made for the occasion, wrapped Garrett's head up, gave Nicole a pail for her water, and bruised her face up with a little make up. It was super cute.

Jack (Garrett) & Jill (Nicole)

Much love,

Overheard

2010-11-17T21:48:00.005-06:00

What you would have overheard me say to Gavin today if you had been hanging out in Smithville:

"Gavin, please don't drink and drive!"

He was driving his plasma car around in the kitchen while holding a glass of milk. I immediately envisioned glass breaking. And those were the first words that came to mind. I was just shocked because I didn't expect those particular words to be necessary at this stage of the game.

Much love,

Birthday Stitches

2010-11-14T19:41:00.007-06:00

Gavin turned 6 years old on Friday. Birthdays are such blessings. And Gavin's seem so much sweeter, knowing the odds he has overcome to get to 6. It just makes my heart smile.

I want to say thank you to those of you that gave snacks and/or prizes to our donation drive for the Center for Cancer and Blood Disorders at Children's Medical Center's Legacy Campus. We delivered the goods to the clinic Friday morning. We figured what better way to honor the fact that Gavin's life continues than to give to those children who are still fighting for their life. I think this is something we'll try to do every year on his birthday. Gavin and Garrett got to help restock the prize closet and the snack area. To say they had a blast doing it is a serious understatement. The clinic is so near and dear to us. We love that place and all of the sweet friends we have made there.

Today was Gavin's birthday party. I guess it wouldn't be his style to just have a party without a good story to go along with it. And since Gavin loves Children's Medical Center so very much, apparently he thought a trip to their ER was just the thing to add to the day!

He fell this morning. That's not completely unusual for him. He's still a bit of a Humpty Dumpty when it comes to balance. His legs stay pretty well bruised up. But this time he hit the back of his head on the corner of an end table and got a deep little gash. It seemed to stop bleeding and then would start up again. Not a gush of blood, just a little here and there. After a few attempts to stop the bleeding with pressure we decided we needed to take him in. The catch? It was 12:00 and the party was supposed to start at 2:00. That's what we get for skipping church today. Had we been in the Lord's House, Gavin's head would have been fine! Lessons learned.

Gavin and I loaded up and headed to Children's while Garrett and Jeff finished getting ready for the party. As we pulled into the parking lot, Gavin said, "I hope we get to go to the infusion room!" (That's where he would get chemo and blood transfusions. Every kid loves that place, right!?!) I told him that stitches were done in the ER, not the cancer clinic. He was bummed.

Upon arrival at the ER, I mentioned the fact that Gavin's birthday party was to start in only 1 and 1/2 hours. The guy at the check-in desk mentioned the fact that there were about 6 or 8 people in front of us and the first in line had already waited for 40 minutes. YIKES! He did smile and tell me to talk to the triage nurse about it when she called us back.

Once we reached the triage nurse, we explained again that Gavin had a party to get to. I'm sure she hears that all of the time, right? ;) She was kind and said that a room had just opened up. Technically, because of Gavin's shunt, he would be considered a high risk for infection with an open wound to the head. So it was appropriate to move him up in line. Who knew a shunt could come in so handy!?! (Joking, of course! Kind of.) Off to our room we went!

The doctor came in and agreed that stitches were in order. But she also wouldn't feel right sending him along without a CT scan as well. I told her I didn't think it was necessary. Not because of our rush to get to the party. I just didn't think he had shown any signs of a neurological change. The CT seemed like overkill. A better to be safe than sorry kind of call, if you ask me. Gavin's had his fair share of radiation to the head, thank-you-very-much. She clearly didn't agree with my input and said she'd go consult with another ER doc. While she was gone, I called the neurosurgeon on-call, who agreed with me. In fact, "absolutely not" were his words. "Have them call me if they have any questions" was what he added to that. So, no CT was done.

Gavin did great getting the stitches. No tears. He's a tough little one! And he was delighted when I later told him that the stitches were done with blue string. His favorite color! It was seriously the fastest ER trip in our history. And Gavin was only 10 minutes late to his party. Way to go Children's!!!!!

Gavin had a blast at his party. We went simple this year and partied at the park. I highly recommend it, by the way. Gavin's cake had a garbage truck on it. And so many of his cute little friends were there. He loved it!

It's been a long day, so I am sorry to say that I am signing off without pictures. They'll follow soon. I promise. ;)

Thanks for checking in.

Much love,

Up. Down. Blessed.

2010-11-10T23:30:00.005-06:00

Yesterday was a crazy day for us and I decided to blog about it. So, sit down and get cozy for a moment. It's a little bit longer than my recent posts, but important for Gavin. So please hang with me on this one.

We had two major appointments for Gavin. First, Jeff and I saw the neuropsychologist for a follow-up consultation for Gavin's cognitive testing that is done yearly. Last year's appointment was pretty sad for us both. To hear words like "below average," "impaired," and on and on while talking about your child is disheartening, even if it's done in a gentle way. And to know the long-term risks associated with Gavin's treatment that might not have shown up yet made it even harder to hear. We were encouraged, however, to do whatever we could to help Gavin progress and succeed academically.

This year, we had a great appointment. While there are still areas that need improvement, Gavin didn't just develop at the same rate that he was at last year. He made significant progress. We heard more terms like "average" and even some "superior." We were proud that the dedication our entire family has for Gavin's progress appears to be having a positive impact on him. :) And we're encouraged to keep up the hard work because we know he is at risk to have even more trouble academically on down the road. (Thank you for continued prayers on this front as well!)

We left Children's in Plano, raced back to Gavin's school to pick him up, and then raced on down to Children's in Dallas for our next appointment.

Endocrinology. An area of specialty we actually didn't need on Gavin's team of doctors until now. Unfortunately, it looks like the endocrinologist is someone we'll be getting to know quite well.

Whole brain radiation and intrathecal chemotherapy (chemo given to the fluid that surrounds the brain and spine) is known to damage the pituitary gland. The pituitary gland is a teeny little thing deep in the brain that is so very important in the production of growth hormones and a slew of other important hormones. Without it, your body isn't "told" to grow. And Gavin has not grown. In a long time.

The endocrinologist feels pretty certain that Gavin isn't producing growth hormones, which is fairly common for pediatric brain tumor survivors. Gavin had some more bloodwork and an x-ray of his hand done yesterday. The next step is a 1/2-day long test that will further substantiate just how much hormone his body is or isn't producing. The doctor expects Gavin will fail.

The treatment for all of this is a shot that we would give him 6 nights a week until he reaches his full adult height. That's probably 14-16 years away. And along the way, the endocrinologist will screen for various other hormones that will likely be low or absent and then replace those as well. The doctor said there is a good chance Gavin might need hormones replaced for the rest of his life.

But there is more to it than that. Growth hormone shots work by stimulating rapidly dividing cells (like the ones needed for bones to grow). Unfortunately, other cells also divide rapidly. Cancer cells. So, if there are any cancer cells hanging around (perhaps even so small that they don't show up on an MRI), the growth hormone shots can make the cancer grow even more quickly than it would on its own.

Yes. This scares me.

We don't know yet what the plan of action will be. The 1/2-day test will help us some. And we'll be chatting with the oncologist about whether he feels we are far enough out from treatment to proceed with growth hormones. The endocrinologist also plans to discuss this with him. It's not cut and dry. Risks either way. So please keep all of us in your prayers and we discern what is in Gavin's best interests.

Of course, this mama bear would love for him to pass the next test with flying colors. For someone to come waltzing in and say that he would start growing on his own again. That he just needs a bit more time. But I know that's not likely to happen.

The reality of the cost of surviving a brain tumor for these children is sobering to say the least. I pray that one day we can treat them in a less toxic manner. That saving a life doesn't alter that life in such drastic ways. And I know that is going to take a lot more funding for pediatric cancer than is currently being done. But that's a whole 'nother post. ;)

So, we felt "up" at the neuropsychologist's office and then "down" at the endocrinologist's office. And then back "up" with an early birthday dinner for Gavin, who turns 6 on Friday. It was a bit of an emotional whirlwind for a single day.

We have those moments where we are up. And we have those moments that we are down. Usually, they don't occur in the same afternoon, but sometimes they do. Regardless, we know that we are blessed. Our son is alive. A life not yet completed. A testimony still in the works.

Up. Down. But definitely blessed.

Thank you for continuing to follow Gavin's journey through life. We covet your prayers for our family.

Much love,

He Shouldn't Know

2010-11-04T22:32:00.004-05:00

My little Garrett told me that a friend of his from preschool had been absent again, two days this week. He seemed concerned for his friend. I mentioned that he was probably sick, but would likely be back next week. His response?

"Maybe he needed some blood, Mommy."

That's right. My 3 year old wonders if his preschool classmate is missing school because he is sick enough to need a blood transfusion. Part of me wonders if blood transfusions are somewhat of a normal thing in Garrett's mind. The other part of me wonders if Garrett worries that his little friend might actually have cancer.

He shouldn't know.

But he does. That's why he suggests we pray for those children with cancer. Gavin does this as well.

I wouldn't have chosen this road for my little ones. Each boy trying to make sense of a disease like cancer at such an early age in life. But, I trust God to handle the "whys" of this life and know that He has a plan for this family of ours. I feel blessed that these boys already want to turn to God with the needs of themselves and others.

Even those needs I wish they didn't yet know they needed to pray for.

Much love,

Halloween 2010

2010-11-01T21:07:00.005-05:00

The boys thoroughly enjoyed the Halloween festivities. They were both so enthusiastic about the costumes they had chosen this year.

Dr. Gavin -- such an appropriate pick on his part considering he pretends to be a doctor on nearly a daily basis

Scooby Doo was Scooby Cute

Brothers & Friends

Waiting for the "customers" to give candy out to

Two years ago, we had to skip the fun altogether because Gavin was just too sick to do it. We are very blessed to get to make memories like this. Having been where we've been helps us to treasure days like this even more.

Much love,

Just Say No To Acorns

2010-11-01T20:55:00.003-05:00

So I had mentioned the other day that I found 2 acorns in my dryer. The boys had started collecting them and wanted me to store them somewhere. We decided on a glass pumpkin. And they had it nearly full in a matter of a couple of days.

Today I noticed that some of the acorns were getting fuzzy, indicating some mold growth or something. YUCK! Garrett and I decided we'd bag the acorns and release them back to nature in a park. During the transfer from the glass pumpkin to the bag we found a bunch of little white worms. I am not sure what they're really called. Grubs? Regardless, it grossed me out.

Lesson learned. No more acorn collections. Apparently, it could have been worse. My neighbor commented on the previous acorn post today to say that some of those little worms ate through the leather of her mom's seat in a car. YIKES!

As for me and my house, we'll let the squirrels keep those acorns all to themselves! ;)

Much love,

The Racket In My Dryer

2010-10-28T21:15:00.004-05:00

The laundry was drying away and I had just settled down with a good book. Then, I started hearing this rhythmic racket coming from the laundry room.

About the time I got out of my cozy reading spot to investigate further, the noise stopped. Well, for awhile anyway. Two paragraphs later the racket started up again. So, I ended up emptying the dryer to locate the problem.

And what did I find? Two acorns. Yes. In the dryer. I really shouldn't be shocked by this. The boys are loving collecting acorns right now. Especially Garrett. He even slept with a couple of acorns last night.

I guess I will start checking pockets. ;)

Much love,

Overheard

2010-10-28T20:11:00.004-05:00

Gavin: I cannot believe my eyeballs!!!

It's his new favorite phrase when something really surprises him. :)

Much love,

Yee Haw!

2010-10-26T13:30:00.003-05:00

It was "Texas Week" in Garrett's preschool class last week. One day they got to dress up like cowboys. And although I am a bit biased, I think Garrett makes the cutest cowboy in the west!!!

Many thanks to Tate & Jackson for helping with our less-than-western wardrobe here in Smithville. I especially loved Tate's belt buckle!! Garrett was so excited to be a cowboy. And the thumbs in the pocket make it look so much more authentic, don't you agree?

Garrett and his sweet cowgirl of a friend, Nicole. If you think this picture is cute, just you wait. These two are going to be Jack and Jill for Nursery Rhyme Week! Pictures to come. :)

Much love,

Gavin Loves Cousin Brock

2010-10-26T13:19:00.002-05:00

Gavin absolutely loves small children. And his baby cousin, Brock, is no exception. We got to visit with Brock and his older siblings last week. Oh, how Gavin loved getting to hold him!!

Beth Moore Bible Study

2010-10-21T22:36:00.002-05:00

For those of you that live in the Dallas area, I wanted to invite you to join a Bible study that I will be facilitating at First Baptist Church of Allen. It's by Beth Moore and if you aren't familiar with her work, you won't be disappointed. This study is on the Psalms of Ascent and is called Stepping Up. I've looked it over and watched the intro DVD and it looks awesome.

We'll get started on Wednesday, November 3rd, from 6:00 - 7:30 pm. The study will run for 7 weeks. Childcare will be provided. Workbooks cost $10. For more specifics or to get registered, please email me at staciesmith19@hotmail.com with "Bible Study" in the subject line.

I'd love to meet up with some of you!

Much love,

Love Is...

2010-10-18T21:40:00.003-05:00

...eagerly sharing your hard-earned stickers from physical therapy with Mommy and Garrett. Each and every time. And I think the Mommy that leaves the sticker on her shirt ALL day long because that little boy asks her to must show a tad bit of love as well. ;)

Much love,

Life Simplified - Coupons

2010-10-17T20:52:00.004-05:00

I am always looking for ways to simplify life. And I am thinking most of the people reading this blog would like to do the same. While I am not an expert on the subject, I thought I might as well share some of the things we have done to make life in Smithville run a bit more smoothly. I plan to post under the "Life Simplified" title as I think of other things that might be beneficial to others. Since today was a grocery store day, I thought I'd share what we do to simplify coupons in our household. Who doesn't love to save money? ;)

The truth is, we don't get to use coupons as much as we did before we started what I lovingly call "the anti-cancer diet." The foods that are quite a bit healthier don't tend to provide coupons. It's a bummer, but a fact of life for us now. However, we keep the coupons we still get to use well-organized. I know many people who say they'd use coupons if it didn't take so long to sort through them to figure out which one they needed to find. So, I am pretty sure coupon organization might be a big reason why people aren't saving more money through coupons.

Here's how our system works:

1. Gather 1 large 3-ring binder, 21 tabbed dividers, and 30 - 80 clear pages that hold baseball cards (depending on how many coupons you plan to manage at one time).

2. Label the tabbed dividers, in alphabetical order. Use whatever categories work best for you. Here are the ones that are in our folder:

Baby (mine aren't really babies anymore...but oh well!)
Boxed Meals
Breads
Breakfast
Canned Goods
Cleaning
Condiments
Dairy
Desserts
Drinks
Frozen Foods
Italian
Laundry
Meats
Medicine
Mexican
Miscellaneous
Paper & Storage
Restaurants
Snacks
Toiletries

3. Place the dividers into the binder, with a few baseball card holders behind each one.

4. Place coupons into the baseball card holders. Fold coupons as needed to make them fit each slot well enough. Make sure you keep the main information visible though (i.e. amount of coupon, brand, expiration date).

5. Try to pull out expired coupons at the first of each month.

6. Enjoy some organization!!! ;)

Did you like this? Let me know what other areas you'd be interested in hearing "Life Simplified" posts on. Perhaps I have something to share!

Much love,

My Favorite Things - Healthy Food Edition

2010-10-14T22:28:00.004-05:00

These are a few of my favorite healthier foods. And most of them are also ones that are kid-approved here in Smithville. I figured I might as well spread the word. Maybe they will become your next new favorite thing as well. :)

- Island Vanilla cereal (made by Kashi)

- Honey Nut O's cereal (made by Cascadian Farms)

- Blueberry Clusters cereal (made by Cascadian Farms)

- Barney Butter (natural almond butter in the creamy variety, no stirring needed)

- Nature's Path Organic Chewy Granola Bar (pumpkin-n-spice flax plus variety)

- Sweet Leaf Sweetener Stevia Plus (added to green tea instead of sugar)

- Clif Kid Organic Twisted Fruit

- Dried cranberries

- Back To Nature Organic Stoneground Wheat Crackers

- Back To Nature Honey Graham Sticks

- Raw almonds

- Annie's Organic Bunny Fruit Snacks

- Stretch Island Fruit Company's All-Natural Fruit Strips

- Hormel's Natural Choice lunch meats (no nitrites, nitrates, artificial ingredients, MSG, added hormones)

- Cascadian Farms organic frozen sweet corn

I'll try to update again with others some time. What are your favorite healthier foods??

Much love,

Let's Make a Difference Together

2010-10-11T21:04:00.004-05:00

Last year around this time we did a little donation drive to gather up arts & crafts supplies and DVD movies for the Center for Cancer & Blood Disorders (CCBD) at Children's Medical Center's Legacy Campus (Plano, Texas). We were floored with how people gave.

This year we have decided to do anther donation drive, but we're changing it up a bit. From recent talks with my friends over at the clinic I learned that there is a big need for more prizes in the prize closet as well as more snacks and drinks in the infusion room area. Let me explain both of those a bit more.

The Prize Closet
Oh, how kids love the prize closet in the cancer clinic. This beloved collection of treasures supplies the children in the CCBD with a prize every time they are poked. And yes, I mean a needle poke. Frequent bloodwork, shots, port accessing. These kids get poked a lot. And the staff feels they deserve a little something for it. And I agree. The thought of getting to go to the prize closet makes these kids that much tougher during a rough experience like a port access. And, it usually gives them something new to play with while they are at clinic that day and then to take on home with them.

The prizes for this closet are not part of the CCBD budget. Money has to be allotted for more important things, like buying the latest and greatest in technology to help save lives every day. So, the CCBD relies heavily on donations from others to keep the prize closet stocked. We were there today, in fact. And I saw that the stash was getting a bit low. And when I asked further, I found out that there is only a handful of other prizes to restock with. They need OUR help.

It's fun to buy prizes for the prize closet. We've taken some prizes in here and there to give back to the closet. The boys absolutely LOVE going shopping for the prize closet. Surprisingly, they never ask for something for themselves when they know we're shopping for the closet. And they have such joy as they hand over the bags of prizes to the nurses at the CCBD. I figure it kills two birds with one stone. We help maintain the prizes and the boys get to learn about the joy of giving to others. It's that simple!

Prizes come in all shapes and sizes because the clinic treats kids of all ages. Both boy and girl prizes are necessary. Spend a little on each prize or spend a lot on each prize. You decide. Regardless, know you are going to make a child's day!

One very important rule anytime we give to the CCBD. Every item must be BRAND new. This is not because the patients are that particular at the CCBD. It's because the majority of them have very little, if any immune systems to rely on. Items have to be new. No exceptions.

Snacks & Drinks For The Infusion Area
The infusion area is a collection of private rooms around a central nursing station. The rooms are for patients at the CCBD for outpatient infusions. Maybe it's a blood transfusion. Maybe it's all day chemotherapy. Regardless, most kids are there for at least a few hours.

Gavin spent so much time in the infusion room, the staff lovingly referred to one specific room as "Gavin's Room." They treat you like family in the clinic, which makes the thought of chemotherapy dripping through your child's body a little more tolerable.

One perk of the infusion room at the Legacy clinic is the snacks and drinks. Gavin didn't really partake in many of them because he really only wanted water during his cancer treatment because of his extreme nausea and vomiting. TPN & lipids given through is port provided him with his nutrition. But, that's not the case for most kids there. And having some snacks there on hand provides one less thing for these parents to have to remember to pack for such a long clinic day.

Drinks to consider would be juice boxes, Gatorade, Sprite and the like. They have a ice and water machine there in the clinic, so bottled water is not really needed. Good snack options would be items such as goldfish, pretzels, fruit snacks, graham crackers, jello, fruit bars, granola bars, etc.

There are two very important rules we must follow in donating food or drinks to the clinic. First of all, everything must be individually packaged. No big bags of pretzels to share among several patients. And the outer package of item must have a expiration date on it. It's just to keep everything fresh and safe for the kiddos.

Here's How To Help
1. If you live in the Dallas/Fort Worth area, let me know if you have a donation to drop off. We'll make arrangements. Simply email me at staciesmith19@hotmail.com with "Donations" in the subject line.

2. If you don't live in the area, but would like to help out I'll happily be the personal shopper if you want to send some money. The boys and I did this at the end of last year's donation drive. It was SOOOOOO much fun. Again, email me at staciesmith19@hotmail.com with "Donations" in the subject line and we can talk about more details.

Deadline
While the CCBD will always take your donations and I will always gladly be the courier of your donations to them, I am going to set a deadline for this particular drive. I figure it will give you all a bit more motivation to do it NOW instead of later. :)

So, I will accept donations for this particular drive until Monday, November 8th.

Join the fun. Make it a group effort. Try to get your church, sports, cub scouts, bunco groups involved. Let's make a difference together!

Much love,

The Price Of Cancer

2010-10-10T21:50:00.004-05:00

The last couple of posts I have written about Gavin were a little sad. In one, I wrote about the revolt he had going on against us as parents. He was angry about everything and cooperating with nothing. In another post, I retold a conversation that Gavin and I had about how he really wanted more hair. And I realize I haven't written much about how he's been since then. Time for a little update.

The revolt has simmered down a bit. The angry, noncompliant behaviors are still limited to Jeff and me, which is a blessing in and of itself. We have a string of good days and then a string of bad days. Honestly, I can't figure it out. That's the beauty of parenting, I suppose. It seems to be more than just typical stuff for his age. And given the sheer trauma that he endured for such an extended period of time, I can completely understand it. We just have to find the right avenues for him to work through it all. And as my counselor so eloquently put it, it is better for him to work through his anger in kindergarten than to deal with it as a 15 year old with a substance abuse issue. Point well taken! ;)

A few weeks ago we met with one of his child life specialists at Children's Medical Center. They did a little "medical play," which is where the child is allowed to play doctor on a little doll as they chat along the way. You can learn a lot through that. Gavin LOVES to play doctor. In fact, that's what he decided he wanted to be for Halloween this year. And let me tell you, he looks adorable in his little scrubs and lab coat! (Pics to follow. I promise!)

So, Gavin was doing "medical play" at with his buddy Kristen there at Children's. We have the most sophisticated doctor kit in the neighborhood. I would be willing to put money on it. But, Kristen brought out a few things that Gavin didn't have at home. The butterfly needle (safely disengaged, of course!) provided Gavin an opportunity to draw blood from his doll. And let me tell you, that doll apparently needed a lot of labwork! I think that poor doll had over 30 blood draws in less than half an hour. But, Gavin was humane about the process. He would tell the doll that the rubber band he was putting around its arm would hug his arm a bit, but shouldn't hurt. And that the needle was just going to feel like a little poke.

Gavin was also given a port access kit to play with that day. For those that don't know, a port is kind of like a permanent IV site that is surgically placed in the chest area for patients receiving chemotherapy. Gavin's was continuously accessed for 15 months because he was on TPN and lipids (IV nutrition). He needed a new needle placed each week. It was a process that he never got used to. It always freaked him out.

I sat across the table, half amazed and half heartbroken, as I watched Gavin go through every detailed step for accessing that doll's port. For example, he spoke about how to make the alcohol come out of the spongey thing in order to clean the area first. And he knew that the area needed to dry a little before sticking the needle in. And he knew just how to work the fancy tape that covers up the port needle once the access is done. It had been over 13 months since Gavin had a port, yet the steps were so deeply embedded into his precious mind. I wished he had forgotten. But, I should have known better.

It struck me then just how much trauma Gavin had been through because of his cancer. He was so young when it all started. So shy. So innocent. So scared. He was forced to become accustomed to needle pokes, surgery, chemotherapy, radiation, sedation, medication, vomiting, weakness, hair loss, mouth sores, and endless medical tests. Doctor visits took the place of possible play dates. Hospitalizations took the place of planned preschool. Therapy sessions took the place of the start of something fun like soccer.

This world of pediatric cancer was all Gavin really knew by the time it was all said and done. And now that he's starting to really get a view of life outside of the walls of a hospital, I can see where he'd start to think, "Hey! I got the raw end of the deal! This is what I've been missing out on!" And it would be easier to digest if everything went back to normal once the chemo drip stopped flowing. But, that's not the way it works in the brain tumor world. The struggles continue. And honestly, I think they always will.

You might read this, shed a few tears for my little warrior, and say, "God bless his little heart!" But, I earnestly ask that you don't stop at that. Please keep Gavin in your prayers. While the body was being healed, I think part of Gavin's heart was being trampled. And that's a lot for a small child to process. So, please keep Gavin's emotional well being in your prayers. Obviously, God's work in Gavin's life here on earth is not yet done. May he grow into a mature young man that can look back and see God's hand in all of it instead of the physical and emotional pain that was required along the way.

And may you remember to say prayers for all of God's children that are giving everything right now to fight cancer. It is a tough road for thes little kids. And every prayer counts.

Thanks for checking in on our family. I can't tell you how much it means to us to know that so many people care. Have a great week!

Much love,

Love Is....

2010-10-09T20:20:00.004-05:00

...bass fishing on your date night. Especially if it is the wife's idea. ;)

I love you, Jeff. No matter how much those fishies are biting, my life is better because I spend it with you.