Bieber Fever ... For A Good Cause

Okay, Bieber Fans, have I got a great opportunity for you! If you work this right, not only will you win two tickets to a Justin Bieber concert, you will also get to meet him personally. And you'll be raising money for an excellent cause.  I know there's a few of you motivated enough to make that happen.  Here's the information:

Avalanna Routh, a beautiful little girl, who touched the lives of so many near and far, had AT/RT (the same kind of cancer that Gavin had). Her father, Cameron, reached out to us shortly after Gavin was diagnosed. Avalanna was finishing up her first treatment protocol as Gavin was beginning his. Her parents were such a wonderful resource to us during some very frightening days. It's people like them that we'll forever be grateful for. Over the years, we have kept up with Avalanna and her parents. We joined so many, praying that Avalanna would receive the cure her sweet body desperately needed. A little over 6 months ago at the tender age of 6 years old, Avalanna passed away.   We were so saddened to hear the news. 

Among the lives touched by Avalanna during her short time here on earth was Justin Bieber. Avalanna was one of Justin's biggest fans. Word traveled to him that she loved him and he flew her to a concert and met with her. Perhaps you saw it on the news.  Or on Facebook.  Or Twitter.  His tweet about her passing was the second most popular retweet in 2012.  ;)  Justin and Avalanna became fast friends and kept in touch for the duration of Avalanna's life.

Inspired by Avalanna and wanting to help find a cure for her cancer, Justin has offered something special for those raising money for the Cure AT/RT Now Fund. The person who raises the most money for the Cure AT/RT Now Fund between April 1st and July 1st will win Justin Bieber tickets and a meet and greet.  For more information, official rules, and ideas on how to make your fundraising most successful, go to http://www.cureatrt.org/MeetJustin.html. 

Well, don't just sit there.  Start fundraising!  :)  

Much love,
 

Even When Cancer Is Part Of The Plan

What a difference a few years can make on the same calendar day. This day holds a lot of memories for me. Let's start 10 years ago in 2003. Jeff and I closed on our house that day. It was such an exciting time. We were young and first time home buyers. We had big plans for our life in this house. Gavin and Garrett hadn't yet joined the family. But we already had big visions for what our home would be like once we would start a family. That time holds such sweet memories for me.

Fast forward 5 years to 2008. We had the same house, 2 sweet boys added to the mix, some great memories made along the way, and lots of plans for our family. Garrett was 14 months old. Gavin was nearly 3 and 1/2.

Gavin had begun having some symptoms that we couldn't quite figure out, but had printed out a list to take in to the pediatrician {'cause that's how we roll -- and the doctors that have treated Gavin along the way can fully attest to that!}. He had become a picky eater nearly overnight. He had experienced a few headaches. He had been vomiting with increasing frequency and mostly in the mornings. He was irritable, which was not at all like him. He didn't want to walk down the stairs, but requested being carried. He didn't want to play on the playground equipment anymore or swing. He just wasn't quite right.

So, on this day 5 years ago, we took Gavin to the pediatrician. Told he had developed reflux, we assumed the doctor was right and began him on reflux medication. I asked friends for a good pediatric GI specialist recommendation. We needed to get this reflux thing looked into by a specialist, right? What 3 year old develops reflux out of nowhere? Would Gavin need to be on reflux meds for the rest of his life? That would be awful, don't you think?

We didn't yet know what was in store.  We hadn't planned for the cancer diagnosis that would be given in just a few more days.

St. Patrick's Day 2003 had been the start of a new journey in our life. And St. Patrick's Day 2008 was the start of another new journey in our life.  

Oh, how I'd love to go back to 2008 and give myself a hug.  A hug that says more than words could ever say.  {Oh, I'd have a lot of things to say to the 2008 me if I could go back and do just that.  That's another blog post.}  But for St. Patrick's Day 2008, I'd want to give myself a hug.  Because I was going to need a lot of hugs in the coming days.

I would give myself a hug and slowly back away.  Far enough removed, saying not a word.  Close enough to see it all clearly, fully aware of what was just around the bend.  And I'd pray for what was about to unfold in 2008.

And here we are on St. Patrick's Day 2013.  We still don't know what's just around the bend.  But Jesus does.  And on this day, I picture Him giving me a hug.  It's a hug that says more than words could ever say.  He's been there since the beginning so He's seen it all.  Our most loyal intercessor, He knows more about the struggles and victories Gavin has encountered over the last 5 years than even Jeff and I are privy to.  While we were shocked to see it all unfold, He's not been surprised in the least.

He had plans for Gavin back in 2003.
He had plans for Gavin back in 2008. 
And He has plans for Gavin in 2013.

He is good.
Even when cancer is part of the plan. 

Much love,
 

A Clear Scan for Gavin

First of all, thank you to those that continue to check in on our family. Saying I appreciate your love and prayer support is a serious understatement!

Gavin's recent MRI was awesome. In the words of Gavin's oncologist: no tumor, no changes, all good.

Praise God for His continued mercy on Gavin!

My heart always sighs in relief when we get good MRI news. I had a fairly difficult time in the waiting period between the scan and getting the good news several days later. Not hearing anything made me want to believe that everything must have looked good. But, there was a little (okay, let's be honest here...rather large) part of me that desperately needed the confirmation. I'll go a little further with my transparency and tell you that I was shocked by how wrapped up in the need-to-know-how-it-looked emotions I still was almost five years out from diagnosis. I guess I thought that if we were nearly five years out, I'd feel much more confident about it all. Perhaps the scans would have simply become routine by this point.

Yeah, not so much.

I'm a work in progress,
carried along by a God that is patient enough to keep on working on me
for as long as it takes.

And know that He wants to work on you as well.

May we all be open enough to let Him do a good work in our lives.

Much love,
 

T Minus One Week Until The Next Scan

Last time I posted I wrote about how Gavin's next MRI had crept up on me and how I am usually acutely aware of how much time we have left before the next scan. Well, it may have been delayed, but it's here.

T minus one week until the next scan. And I am officially acutely aware of it.

This time feels different though. I wouldn't call it "scanxiety." It has not been driven so much by fear, but instead ushered in by a strange kind of sadness. I will try to explain, although until you've been forced to walk in shoes like these it may not make sense.

It comes in waves. One moment I feel secure. Gavin will be five years out from his diagnosis of cancer in March. That's a long time in the AT/RT world and I'm grateful that Gavin has done so well to this point. He has overcome the odds that were stacked against him. He is thriving. And I believe he has beat this thing for good. I trust that God has truly delivered him from cancer.

The next moment is quite different. I'd describe it as an underlying grief. It's a not-so-closed-up wound that knows all too well what the initial injury felt like. It's a sadness that recognizes the fact that we could potentially be just one week away from our lives coming to a screeching halt once more...just one more week. It's a yearning to make it all better, as if cancer had never really entered the picture. It's a guilt that maybe I'm not doing this survival phase well enough, knowing I may have regrets of not enjoying the here and now enough if the whole things goes south once more. It's a plea for God to help me with my unbelief, to heal Gavin of any cancer cells that may be looming in his body, and to prepare me for whatever the future holds.

It's so many emotions rolled up into one mom's heart. The words I use to try to describe it just don't do it justice.  Another cancer mom wrote me an email earlier this week. Her son has been off treatment for quite awhile as well. She put it so perfectly when she wrote that "there are things each day that still seem like they have cancer on them."  Kids pay such a price to survive cancer. The treatment necessary to rid them of the cancer is so much more toxic to their small bodies than it would be in the body of an adult. So, even on the best of days, there is a subtle reminder of what this small child has gone through, what it continues to cost him, and the fact that there are no guarantees in the world of childhood cancer.

I pray next week brings another clear scan under Gavin's belt.  I pray that he continues to flourish despite it all.  And I pray for freedom from the grip that cancer has had on us, even after all this time.  Hope cannot lie in the goodness that earthly life brings alone.  I must put on eternal lenses if I wish to see this mortal life with clearer focus.  Because God knows what He is doing.  And Gavin's life was intimately planned out so long ago.  God has carried us to this point.  And He will continue to carry us every step of the way, even when we struggle at T minus one week from the next scan.            

 Much love,

A Restful New Year

Happy New Year to you all! I hope you are doing well. We thoroughly enjoyed the break from school over Christmas, with lots and lots of unscheduled fun together.  It was nice.  I find that I appreciate quiet family time so much more these days.

The boys are doing well.  Garrett is enjoying kindergarten and the new friends he has made.  It's been fun watching him blossom.  He's a homebody at heart and has thoroughly enjoyed the break from baseball practice and games.  Seasons at his age are not intense and Garrett enjoys playing.  But he loves time to just hang out at home.  I have been protective with after school activities.  Garrett gets bummed out if we have much of anything planned after school, so I try to respect that.  All day kindergarten is tiring for small children.  Perhaps all the rushing around with Gavin's treatment and subsequent therapy and appointments made Garrett appreciate just being at home.  I can't say that I blame him.  I've gotten that way myself.  The boys will be young and wanting to hang out with us at home for only so long.  We must soak that up while we can.

Gavin is trucking along in first grade.  He is flourishing at so many levels, which amazes me when I stop to think about what his sweet little brain has been through.  He works hard (most of the time) with his schoolwork and has a fabulous group of teachers and therapists at school that help him succeed.  He puts in a decent amount of effort at home as well to keep up with it all, but really doesn't complain when "the homework factory" gets fired up each afternoon.  I try to keep it fun.

Gavin has gained a little weight, which made his endocrinologist very happy.  I'm not sure I blogged about this, but at our endocrinology appointment in August, Gavin's doctor was far from thrilled with the lack of weight gain in Gavin since the previous appointment.  He spoke very frankly about the possibility of putting a feeding tube in if Gavin didn't start gaining weight.  Gavin takes human growth hormone shots six nights a week because the part of the brain that tells your body to grow was damaged with his cancer treatment.  The growth hormone shots have been working well, but won't continue to if he doesn't gain weight.  Getting Gavin to eat enough is no small feat.  His appetite is just not all that great (never has been since cancer) and he'd rather eat vegetables and things that just don't pack a lot of calories.  ;)  Gavin is at a time in a boy's life (pre-puberty) that he's naturally not all that hungry.  So trying to get him to eat a lot right now is like rowing upstream.  But, we've worked so hard at it and have supplemented twice daily to get in extra calories and it has finally paid off some.  His doctor wants him to gain about a pound a month for awhile.  Hopefully we can keep it up.

Gavin's vision has been great!  It appears that his surgeries over the summer and fall were successful.  We go back again in the next month or so to see the ophthalmologist.  If his reading progress is any indication, I'd say his eyes are in great shape.

Gavin is due for another routine MRI in February.  Jeff and I were just talking about that the other night.  I mentioned that it was the first MRI that I felt kind of crept up on us.  Usually, I am very much aware of when Gavin is due for another MRI.  It's hard to explain, but I'd say there's something deep within me that desperately needs to know he has another clear MRI under his belt.  It's not necessarily worry, but just a desire to know things still look alright.  There's a difference, right? 

Over 3 and 1/2 years after treatment ended, I am finally getting to the point where MRI dates creep up on me.  I'm sure to some that sounds a little nutty.  Pediatric cancer just does a number on you and it takes a long time to get back to somewhat of a feeling of rest with it all.  I have read recently about post-traumatic stress disorder in parents of kids with cancer and it made such sense to me.  It's just such a shock at so many levels.  But, I do feel greater peace these days.  Don't get me wrong, I am still regularly reminded of the price Gavin paid to get to where he is today.  Surviving AT/RT doesn't come without long-term side effects.  However, I have asked Jesus to grant me peace about it and I'm so grateful for His mercy on our family. 

I belong to a Facebook group that is specifically for parents with Gavin's type of tumor.  The prognosis for AT/RT hasn't improved much since Gavin was diagnosed in 2008.  With the lack of funding given to pediatric cancer research in general, it's really not surprising.  Just sad.  Too many children die entirely too often from AT/RT.  I am frequently reminded just how blessed Gavin is to be here. I pray that Gavin continues to live a life without cancer and provide hope to the many families that are diagnosed with AT/RT.  I remember how scary it was in the early days and how I would have given anything to see a kid like Gavin, thriving nearly 5 years after diagnosis.  That's one of the main reasons I remain active in the AT/RT Facebook group.

Thank you all for checking in on our family.  I pray that you are blessed because of the love and prayers you have offered us over the years.  I'll try to not be such a stranger in 2013. 

Much love,
 

Like A Dream Come True

My mom told us recently that her city was having a recycling day. Part of the festivities included a recycling truck that you could climb up in and actually work a little. We knew that both boys would enjoy that, but that for Gavin it would be a dream come true. (He's loved garbage and recycling trucks since he was two years old for those of you that are just tuning in.)  He has sat in a couple of trucks before, but never operated one.

 Garrett climbed up into the cab first.  They let the kids work the grapple arm with a fancy joystick and watch it dump into the hopper on a little TV screen.  

Yeah...I know all the truck lingo.  Don't be jealous!  It's a requirement for raising Gavin.  ;)

 

  Garrett's can going up. 

 

 "I pledge allegiance to the recycling truck."

(or so it appears...such reverence!)

 

 "Did you all just see what I did?!?!"

 

Gavin was so excited to climb up into the cab for his turn.

 Listening intently to the directions on how to work this thing.

Here we go!

"What?  You want to see me do that again?  Okay, why not!"

(Good thing there wasn't a line.  Gavin did this over and over for awhile.)

An excited smile with his new favorite person.

All smiles from inside the cab.  Looks like a natural, doesn't he?  ;)  

I remember the day Gavin fell in love with garbage trucks.  He was two years old.  We were out in the driveway, about to get in the van to go somewhere.  The garbage truck drove up and stopped to pick up our neighbor's can.  Gavin paused behind the van to watch the truck work its magic.  The driver's window was rolled down.  He paused when he saw Gavin watching him, waved to him and said, "Hiya, buddy!"  Gavin was in awe.  And he's been in love with those trucks ever since.  

Here are a couple of pictures of Gavin sitting in a garbage truck for the first time, right before he turned 3.  

 So small.

Still just as curious about how those things work.

Those pictures were taken about 5 months before Gavin was diagnosed with cancer.  So much has changed since that day.  But Gavin's love of garbage and recycling trucks remains.  Perhaps it's the constant of it that he's loved so much.  A little like that Baby Doggie that he still loves to sleep with.  

Much love,

Catching Up On Things

I know it's been awhile since I penned a post here for the blog. But, I was honestly shocked when I recently looked and saw that it was August when I last sat down to write. Let's just call it a needed break. God's been working on me in a number of ways recently and it was a good time to do less talking and more listening. As I always say, no news here on the blog is good news. We have been good. I'll try to do a little recap on what's been happening here in Smithville since my last post.

Gavin and Garrett started school. Gavin is enjoying first grade and making some great progress. Garrett is loving kindergarten and rocking right along. Here's a few pictures from their first day of school --

 Gavin was so excited to get 1st grade started.  

 Walking to school.  This picture will likely always hold a special place in my heart.  So many times I prayed that Gavin would live to see the day when he and Garrett walked to school for the first time together.  So thankful for this.

Garrett was such a brave kindergartener.  Walked in like he owned the place.  :)

We have been able to spend some fun times with friends, like an afternoon spent fishing with the friend I've known the longest and her sweet family.  I treasure friends, old and new.  But there is something so special about friendships from my early years that remain so strong after all this time.  (Love you, Julie!)  I feel blessed that our kids get to love on each other as well.

September also brought a new baseball season in our household.  Gavin wasn't so much interested in playing this season, so we honored that.  Garrett played.  Jeff coached.  I helped with the dugout.  And Gavin helped with the bats.  He preferred to be called "Batman."  ;)

 Play ball, Garrett!  :)

 "Baseball ready"

 Batman Gavin

Gavin had the chance to attend a camp through Children's Medical Center Dallas for children who have survived cancer of the brain and/or spine.  It was a weekend camp.  He even skipped most of one day of school, but we deemed it worth it.  ;)  It was the first camp we've ever sent him off to.  We felt fine doing so because his oncologist is the doctor for that camp.  Not sure there's a doctor in the world that knows Gavin better than that man!  One of his favorite child life specialists was in charge of the camp.  And two of our favorite nurses from Children's were the camp nurses.  Clearly, he was in good hands.  He was so excited to head off to camp.  In fact, he was the first kid on the bus!  I got an email from his oncologist Sunday morning.  I feared at first that he was writing to tell me that Gavin had strep throat, that he had already called in script, and that he needed me to pick it up on the way to pick him up that day.  Not the case at all.  He was writing to tell me how great Gavin did at camp.  He said, "Gavin had so much fun at camp. We all enjoyed having Gavin with us. See him below making snow cones at our party last night."  Here's the snow cone pic he sent me.  

I later learned that Gavin took charge of the snow cone station.  He was delighted with how many repeat "customers" came to get his snow cones!   

The camp goes from age 7 to 17.  I pray that Gavin and I will be blessed to look back at this picture when he's 17 and heading back to camp one last time.  I envision him walking up to the snow cone station and asking the first time camper that has taken over the snow cone station for another treat.  He won't likely say anything to the snow cone kid, but will recall how it felt to be there for the very first time.  And I pray that he feels eternally grateful for the chance to still be heading to a cancer survivor camp when he started with such a low chance to survive at all.  And as he heads into adulthood, I hope he will take a moment to thank those at camp that helped him reach that point.  Gavin's oncologist must feel blessed to see those graduating from camp for the final time.  Many of them were once very small children fighting such a big disease. 

We feel like Garrett has sacrificed quite a bit to help his big brother get to where he is today.  So while Gavin was at cancer survivor camp, we treated Garrett to some fun as well.  Part of that included a Texas Rangers baseball game.  He loved it!  Jeff and I enjoyed getting to spend some one on one time with this special little guy. 

October brought more fall fun.  We headed to Canton, Texas to experience a new pumpkin patch at Yesterland Farm.  I've looked at all the pictures from that venture and decided it really needs its own post.  Local readers, you need to head there next fall if you didn't go this year.  It was good old fashioned Texas fun!  Here's my favorite pic of the boys and me as we made our way through the corn maze --

Gavin had his follow-up laser eye surgery in October as well.  He enjoyed riding the Hummer once more into the operating room.  The surgery was considered successful.  (Wow! I just realized how far I've made it into this post before mentioning medical appointments!  See, we are doing pretty good!)

My sister and part of her family came down for their fall break.  It was good to see them and the kids had a great time together.  Riley is just a couple of months older than Gavin.  She and our boys enjoyed a trip to Six Flags.

 Steph and Riley

 Brave enough to ride the kiddie coaster without holding on.  ;)

We wrapped up October with some super fun trick or treating.  Gavin was a doctor...again.  Technically, he was a vet last year.  But really, he's been a doctor for three years now.  I joke that he's our "3rd year resident."  Here he is checking out Garrett's (a.k.a. Storm Trooper's) heart with his stethoscope to make sure it was in tip-top condition before hitting the candy trail.

Gavin will soon celebrate his birthday.  Each year we donate prizes or snacks/drinks to the Center for Cancer and Blood Disorders at the Legacy Campus for Children's Medical Center.  We're collecting again this year with a focus on prizes for the prize closet.  As some of you may recall, the kids in the cancer clinic get to pick a prize out each time they are poked (i.e. shot, blood work, port access, etc) or experience some other significant trauma.  Gavin loved his prizes and he loves to refill the prize closet.  We like to donate around his birthday as a tangible way for Gavin to give back to a hospital that helped save his life.  If you'd like to donate to Gavin's cause, email me at staciesmith19(at)hotmail(dot)com. 

Thanks for checking in on us.  :)  Happy fall, ya'll!


Much love,
 

Health Over Wealth

My good friend, Wende, was the first to introduce me to the concept of "health over wealth."  As it sounds, it's the notion that your health is more important than your wealth.  And all too often, you have to spend more money in order to have a diet filled with foods that are actually good for your body.

Many of you know that we've done a diet overhaul since Gavin was diagnosed with cancer.  By most people's standards, we had a pretty healthy diet prior to cancer.  Looking back, I can't say that I would agree with that.  Know that I'm quick to say that had we not gone through Gavin's cancer, I may very well be eating the same (mostly non-organic) diet that we were on previously.  Our life experiences have changed our perspective on food quite a bit.  I'm pretty sure some people feel we've gone overboard.  And that's okay.  It's hard to know what you'd do if you were in such a situation until you are actually in it.  And I hope you never are.

What I generally tell people is that all of the changes we've made to our diet (and cleaning products) are for the better.  The entire family actually benefits from it.  We feel that it creates a more inhospitable environment for the growth of cancer in our bodies.  Even if it doesn't do that, there's a host of other health benefits we're reaping because of it.  And I'll let you in on another secret that I never really believed until we made the switch.  Healthy food, especially organic food, tastes so much better.

The bummer part is the amount of money that we have to pay to actually eat food that is healthier for us.  Our grocery bill went way up when we changed things up.  But once we had truly looked into it all, we couldn't justify the health risks of not spending more on food.  It was pretty eye opening to say the least.

I encourage you to rent the documentary called Food, Inc if you have never seen it.  It talks quite a bit about the meat industry and genetically-modified foods.  And I also recommend a book called Anticancer by David Serban-Schrieber.  Our society doesn't seem to want to know what our foods are doing to our bodies.  And that's a shame because once you know, it's more difficult to keep doing the same old thing.  If enough of us looked into it and demanded some changes, healthy foods wouldn't be so expensive. 

I've done a few Get Healthy posts here on the blog.  And I'm planning to write a few more.  I'm far from an expert on the issue.  I simply speak from my own experience and the reading we've done on it.  But I hope it inspires at least a few people to look a bit more into the foods that we use to fuel our bodies and the products we use in our households.  If you are interested in reading over the previous posts, look on the right side of the screen.  Scroll down to the "Topics On This Blog" section.  Scroll down some more until you find "Get Healthy."  Click on that and it will pull all of the posts I've written on the subject.

I'm mulling over what to write about next for the Get Healthy series.  Anything you're curious to hear about?

Much love,

The Skinny On Our Week

Gavin's recent medical appointments all happened to fall on Thursday and Friday.  It was a bit of a whirlwind. Nothing compared to the old days though.

The oncologist is, of course, pleased with Gavin's progress. I had to chuckle during our appointment. My questions these days are so very different (and much fewer) than before. The doctor and I just marveled at how far Gavin has come. Going to that clinic is still a bit surreal for me. Kids just shouldn't get cancer.  Sitting in the waiting room, memories flood back to me.  I can vividly picture us sitting over on the other side of the clinic with a mask on Gavin's face, protecting him while his immune system was suppressed, wondering if he would be admitted that day into the hospital or if we might get another night at home.  He was sick as a dog and Jeff and I were doing our best to keep our heads above water each day.  Life was so different back then and we are forever changed because of it.  We are blessed to be where we are and we know all too well how precious life really is.

We met with Gavin's ophthalmologist (eye doctor) Thursday afternoon.  She is extremely pleased with how well his eyes are healing up.  Laser surgery has been scheduled for another six weeks or so from now so that his eyes will be fully healed. The laser is intended to clean up remaining cataracts.  She was able to give us a new prescription for glasses in the meantime. It may change slightly after the laser surgery, but not too much. We are happy to order the new glasses, even if we need to switch after laser surgery again. Gavin will have to go to school for the first week or so without a prescription, which will stink because he cannot see well at all right now.  But there's no way around it. He will need progressive bifocals because of the artificial lenses he got through cataract surgery. We hear kids transition much easier into those than adults. I am praying that is the case.

His ophthalmologist also lifted the physical restrictions Gavin had after his eye surgery.  Gavin is elated about that. He has been running all over the place. Last night he was doing laps around the house shouting, "I can run again at last!!!"  It's nice to see him so excited about it.

Friday brought a trip to the dentist for both boys and a visit with Gavin's endocrinologist. Neither boy had cavities.  Gavin had a sealant put on permanent molar to hopefully prevent some cavities. Normal stuff.  ;)  Gavin's cancer treatments put him at an increased risk for dental decay, so I'm always happy to hear that his teeth are doing well.

And then there was a trip to the endocrinologist.  He is the one in charge of Gavin's growth hormone shots.  He and I had a lengthy chat about Gavin's weight. Gavin has grown 3 cm since our last appointment, but he is not gaining weight. So he just gets skinnier and skinnier.  Jeff and I were skinny kids, so we expect it a little. But not like this. His appetite has decreased significantly in the last 4-6 weeks, which has been a problem. If he doesn't start gaining weight soon, his growth hormone shots will be negated and he will quit growing as well. We discussed a number of factors that could be the cause for the decreased appetite.  We will be trying a few things to see if we can beef him up a bit, including increasing his growth hormone dose.

The boys start school in a few days.  I will try to post some back to school pics soon thereafter.  For those of you with kids heading to school as well, I hope they have a great year. Remember how blessed you are to have kids growing up so fast, even if it makes you a little sad to see them grow. I know too many moms and dads that are painfully reminded each year when school starts that their child isn't here to do that. 

And that brings me to my last thought. September is Childhood Cancer Awareness Month. Expect to see a lot from me on it this year. We have got to do a better job of increasing awareness for childhood cancer.  It's taking too many of our kids.  Increased awareness = increased funding for the research necessary to beat childhood cancer once and for all.  And I think we would all agree that it's about time. These kids need our help. 

Thanks for checking in.  :)

Much love,
 

Go Gold

Oh, how we need to see more gold!! September is Childhood Cancer Awareness Month. I'm getting a head start because I think it should be all year long. (Mute any music at the bottom of the blog before starting video.) Much love,
 

Meet Case

I recently needed some physical therapy. I had stopped working out back in January because of some pain near my hip. I had hoped it would get better on its own and neglected seeking help for it.  We moms tend to do that sort of thing, huh?  ;)  It only got worse with time so I finally sought out some help.  A friend suggested a PT here in town named Xavier Beckham.  Xavier happens to also have a son with cancer, a sweet little one year old named Case that has high-risk neuroblastoma. 

Cute little guy, isn't he?

His daddy is a great physical therapist.  In fact, I graduated from therapy today, less than one month since I started.  I'm happily running again and have restarted my gym routine with a good friend.  During my treatment sessions, Xavier and I inevitably talked "shop" about cancer and the latest on how Case was holding up.  He was diagnosed last fall at the tender age of 10 months, and has had an extremely rough journey thus far.  He has one more round of the current chemo that he is on and big decisions need to be made about what the next step for treatment is after that. 

I know you all have been so faithful in praying for Gavin.  I ask that you please join me in praying for little Case.  His mom blogs over at www.casebeckham.blogspot.com.  The blog is called Best Case Scenario, which I just love.  Some friends of theirs have rallied together for some fundraising to help with their medical expenses.  Trust me, pediatric cancer is far from cheap - even with good insurance on board.  I wanted to let the local readers know of a few fundraising opportunities if you are interested in helping this family. 

This Saturday, the 25th, at the Chick-Fil-A at Willowbend Mall in Plano, a portion of proceeds will be given to the Beckham family.  To make certain that they receive the money, please mention Case Beckham when ordering. I hear a cow may be making an appearance there as well.  ;)

On September 15th, the local professional soccer team (FC Dallas) will host a Best Case Scenario Night.  Tickets bought through this link will benefit the Beckham family.  Tickets must be bought through that link for the donation to be made.  For more information on the event, click here.

They also have some great wristbands and t-shirts you can buy.  The wristbands are similar to the ones that Gavin had, which are so helpful in reminding you to pray for Case each day.  And the t-shirts are green and say "Stating His 'Case' Against Cancer" on the front and Beckham and the number 1 on the back.  Leave a comment on their blog with your email address if you are interested in buying a wristband or a shirt and I'm sure Emily will contact you to get you hooked up.

Thank you in advance for extending some love to this family.

Much love,
 

The Bumped

Gavin had an MRI on Monday, which showed no evidence of disease.  Thank you for being faithful to pray for his health.

Gavin had a very difficult time the night before the MRI, struggling way past his usual bedtime to fall asleep.  When I talked to him a bit more about why it was he was not sleeping, he admitted that he was afraid his MRI was going to be bad.  I'm pretty sure he heard my heart break or at least saw the expression on my face that revealed how sad I was for him at that moment.  This was the first time he had ever verbalized "scanxiety" to me.  Once again, I just wished I could kiss it and make it all better.  He just knows too much to only be 7 years old.  In true Gavin fashion, however, he recovered nicely the next day and showed nothing less than full courage for his day at Children's.  (Thank you to those that joined me in praying for his peace that night.)

Radiology was behind schedule the day of Gavin's MRI.  An inpatient child needed one done, so we were bumped for a bit.  The staff was very apologetic, knowing Gavin was not allowed to eat or drink anything until we were done with the MRI.  I couldn't get upset though.  Do you know how many times Gavin's had symptoms that warranted us bumping another kid on the MRI machine?  More than a few.  As I told the anesthesiologist, I'm blessed we are now the "bumped" and not the "bumper." 

Four years ago we were in the fight for Gavin's life - Gavin was just 3 and Garrett was less than 2 years old.  But soon, Gavin will start first grade and Garrett will begin kindergarten.  The little smiley faces I put on the blog sometimes don't seem to do that justice.  I know I've mentioned this before, but the start of each school year makes me think of it again.  In order to get out of my neighborhood to head to Children's, I would drive right by our elementary school.  Day after day while Gavin was on treatment I would drive by that school and pray that he would beat the overwhelmingly low odds and go to that school one day.  So, while I know most parents are naturally sad for their kids to be growing up so fast as they head into a new grade each year, I am the opposite extreme.  I'm elated that we've made it to this point.  And that Gavin still has the chance to be growing up so fast. 

I hope that others that are facing daunting odds with their child's cancer happen upon this blog.  And I pray that reading Gavin's story will provide them with some hope as they fight for their child's life. 

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.

Much love,

Healing Up Nicely

It's been almost two weeks since Gavin's second cataract surgery.  His doctor told us last Friday that she felt both eyes were healing up nicely.  I'm pleased to report that Gavin shows no new light sensitivity.  Some of you may recall that we were concerned life in general would be too bright for him after these surgeries.  It's an answered prayer for sure.

The sunglasses seen in the last post had to go.  Gavin will still wear them if he is outside, but they were just too uncomfortable for regular use.  Now he is wearing his old frames with the lenses popped out of them.  At first we were concerned that he would touch his eye through the lenses.  (Touching your eyes after cataract surgery is a big no-no.)  But, he doesn't bother them at all.  I wonder if he'd do just as well with nothing on, but am not willing to chance it.  The frames don't bother him.  Why mess with a good thing, right?

Gavin goes in for another eye check the week before school gets started.  If his eyes are healed up well enough, we will get a new prescription for glasses then.  Hopefully, they will be.  Even if they are, he will likely start first grade without new lenses for at least a few days.  Reading is extremely difficult right now, although his handwriting has improved greatly.  We can't wait to see how his vision is when he gets new glasses.

I was surprised to learn that he will get his new prescription before the laser surgery.  Apparently, the work with the laser will clean up the remaining cataracts, but won't change his prescription for glasses.  Interesting.  He will likely have to miss school for the laser surgery, but will only be out for the day.  There is still the possibility that the laser surgery won't be able to get it all and he would need the bigger surgery done again.  We pray that's not the case.

I am pretty sure Gavin is sick of the eye drop routine.  At one point he had 22 doses of something going into his eyes during his waking hours each day!  We get to decrease the drops a little each week, but it's a slow wean.  And the antibiotic drops sting.  But, he's such a champ about them.  I rarely hear him complain when it's time for another drop.  Today though, he cracked me up.  The timer went off and he tried to convince me that it was a false alarm.  Nice try!  ;)

Gavin has another MRI next week along with an echocardiogram.  The MRI is done every six months these days.  I pray that it's clean and feel pretty good going into it because Gavin has no concerning symptoms.  That doesn't mean that we'll have a good MRI, but it always helps keep my "scanxiety" in check if we go into an MRI with no concerns.

Gavin's echocardiogram is done annually.  This checks out his heart function.  One of the chemotherapy agents Gavin received while on treatment can cause heart failure.  The risks actually get worse the longer you are off treatment although some children have problems while on treatment.  Obviously, we just feel better each year when we get good results on that test.

I feel beyond blessed tonight to be blogging about cataract surgeries, routine MRI scans, and echocardiograms.  There are times that I am simply overwhelmed by how far Gavin has come since he was first diagnosed with cancer.  God is good.  And I do not say that just because Gavin is doing well.  He has carried us through the past four years and held us up on our darkest days.  We are forever changed because of His mercies along the way.  No matter what the future brings, He will be with us and will guide us through it all.  I just don't know how we would have gotten by on this journey without a relationship with Jesus Christ.

Thanks for checking in.  We are grateful for your love and prayer support.  Many of you have watched Gavin grow since this all started back in 2008.  I pray you receive many blessings in your life for the time you've spent lifting our son up before the Lord.

Much love,
 

Cataract Surgery - Take Two

Gavin had his second cataract surgery yesterday morning. He was very brave and showed no apparent anxiety about the surgery. In fact, he was very excited to be taking another ride (or should we call it a victory lap?) in the little Hummer down the hall to the operating room.

In the picture above, Gavin had just cruised on past the double doors and was driving alongside his OR nurse.  You can barely see his empty stretcher there on the left.  Another nurse was pushing it behind Gavin.  It had a red fireman's helmet there at the end of it as well.  (Only at a children's hospital, right?)  Once Gavin arrived at his operating room, he parked the Hummer, got out and walked confidently on in for surgery.  It made me proud and a little sad all at the same time.  Gavin feels right at home at Children's.  I think it's the cutest thing that they let the kids that opt to not take the Versed before surgery drive themselves into surgery.  It seems like it would be very empowering for a child before surgery.   

Gavin's doctor said this eye was quite a bit worse than the other eye was, but that she thought surgery went very well. Both eyes will require laser surgery in about 4 weeks. As I understand it, she will basically be cleaning up remaining cataracts that she couldn't get with this surgery without damaging his eyes. If laser is successful, he will get new glasses soon thereafter. If it is not, we'll have to do the big surgeries again, which would also take him out of school for 2-3 weeks soon after it starts up again.  Obviously, we're praying that laser is successful.

Gavin can no longer wear his previous glasses because the prescription is no longer appropriate and would strain his eyes. However, he won't get new glasses for at least 5 more weeks. His doctor recommended that he wear regular sunglasses (all day long) during this period. It's important that his eyes have protection so he doesn't rub them at all. Here's a picture of him rockin' the shades.  

He was happy in this picture because he had just gotten the massive post-surgical patch off this morning.  However, the glasses aren't nearly as comfortable as his usual glasses.  Hearing aids and bulky sunglasses don't mix all that well.  I've added a little padding here and there, but I don't know that it will work for 5 weeks.  We may look to get a low to no prescription set of glasses for him to wear in the meantime.  If only Walgreen's sold kids readers like they do for adults!

It's pretty obvious that he's having a hard time seeing right now.  Part of it is likely due to the sunglasses being used inside.  We got the lightest ones we could find, but it still has to be hard.  But I think the greater issue is really his vision right now.  He needs glasses, but his eyes are healing and changing rapidly.  He worked on a new Lego set today.  He loves those.  He still had fun, but needed so much assistance with it.  He just couldn't see what he was doing very well at all.

We appreciate your prayers, as always.  Please pray that he doesn't develop any infection in his eyes.  Also, he has a regularly scheduled echocardiogram and MRI in August.  Please pray both of those look great.  Thanks for checking in!

Much love,
 

Slowing Gavin Down

Gavin has felt great since surgery on Tuesday. In fact, I find myself frequently reminding him to slow down. I didn't think he did much running or jumping until it was against the rules. Seems he gets excited about everything and I have to go spoil the fun and tell him to hit the brakes.  

I had heard the eye drop regimen after surgery was pretty heavy. They weren't joking. I made an Excel spreadsheet and set alarms on my phone to help me keep track of it better and that has helped tremendously. We've had crazier med schedules in the past, but apparently I'm a little rusty.  It's been awhile!  ;) 

Gavin complained about some pain after his antibiotic drop this afternoon. I called the doctor and they said to call back in the morning if it still hurt. He may need another antibiotic. Apparently, the preservative in the antibiotics can cause pain after a few days. 

This evening, I noticed that the blood-like bruising in his eye had spread and looked much worse. I began to panic because he had the pain earlier with drops and I had to get onto him several times to not run or jump. I was afraid things were going awry. It looked even worse at bedtime, so I called the doctor again. Surely, I'm not the only mom that freaks out after her child has eye surgery. The idea of an infection making him go blind has me a teensy bit on edge, I suppose. The doctor called back and reassured me that the spreading of the blood was completely normal, just like a bruise that gets worse with time. This was not a sign of infection or other issues.  What a relief! 

Thanks for continuing to pray that this eye heals well and that the other eye goes well next week.  Gavin looks forward to cruising into the operating room in Children's little Hummer again for Round #2. 

Much love,