Thank You, Friends

I just returned from meeting my friend, Joy, for dessert at The Cheesecake Factory nearby. It is sort of an anniversary of sorts for us. :) She and I met a little over a year ago through mutual therapy friends (She's a physical therapist). She had been told about Gavin and began reading the blog and praying for him. Eventually, we spoke on the phone and became great friends instantly. Our first time to meet in person was over cheescake just about a year ago. Not that many months after we first met, she learned that her daughter had what doctors feel is mitochondrial disease. Suddenly, we had so much more in common because our children's mortality was a bit more glaring than the general population.

Joy's been a blessing to me over the past year. Her story runs deep -- as if mitochondrial disease wasn't enough. But, her faith in God is deeper than anything this life has thrown at her. She's been a wonderful example to me throughout the past year.

And if you don't already read her blog - you should. She took a small break from blogging, but I am so happy that she's back to writing on it. She's got a gift with words. In fact, you need to check out the post she wrote on Sunday. I know that many of us can relate at various levels to what she has to say. Go to http://roehfamily.blogspot.com/2009/11/woman-i-thought-i-would-be.html.

I am so fortunate to be surrounded by friends that have carried me through the last couple of years. Many are friends that I have had for years and years. Some I just met in waiting rooms or hospital hallways along the journey with Gavin. And still others are people that I've never actually even met, but continue to read the blog and pray for my family.

Many thanks to all of you reading this blog that continue to keep up with our family. I covet your prayers and feel strongly that it has made a difference.

Happy Thanksgiving!

Much love,

Care That Matters The Most

I was recently asked by someone that is helping coordinate the Children's Miracle Network Radiothon (that I had interviewed for recently) if I could think of something that the staff at Children's did to make a hopsital stay more special or comfortable. I gave it a lot of thought. The staff there did do a lot to make Gavin's days more special. From the nurses being silly with him, to an oncologist joking around with him about Henry, the biting snail, that lived in her lab coat pocket, to the child life specialists and play therapist that always brought a smile to his face -- they went above and beyond.

But honestly, what I consider going above and beyond was what they did to help clear his cancer. Here's part of how I responded to the question:

It is difficult to think of one thing over the top that was done for Gavin during his time at Children's. Something that people would feel was above and beyond the call of duty. Honestly, I consider the care that the oncology staff gave him each and every day to be over the top. They responded to his needs quickly. They listened to my endless questions. They were gentle with him when he was shy and scared. They did so much to try to make him feel better. Most importantly, they gave him a shot at life. They offered the treatments that cleared him of his cancer.

And while we don't know what tomorrow holds, I have today and so many yesterdays with him as proof that they excelled in the care they provided to him. And for that, I will be forever grateful. I am not sure that I really answered the question in the way you were hoping I would. But, that stands out so much more than anything "extra" they could have done to make our stays better. And it matters the most to me.

Much love,

AT/RT In The News

AT/RT -- Gavin's cancer type -- was featured on the Today Show this morning. Click on the link below to see the full story.

http://today.msnbc.msn.com/id/3041426/ns/today-today_health

Once on The Today Show's site, scroll down to "More Health Stories From Today." From there, click on "St Jude's Little Princess Battles Brain Cancer."

The doctor interviewed on the show is one I actually spoke to when we were trying to figure out where Gavin would best be treated.

Many thanks to Joanne -- mother of Gavin's AT/RT buddy (Ryan Goldblatt) -- for even bringing the story to my attention. I didn't see it.

Much love,

Frogs Eat At IHOP

We took the boys to IHOP this morning for breakfast. Tonight, as I was getting the boys ready for bed, Gavin picked up one of their books that is all about frogs and the process they go through to turn into a frog. He was pretending to read it aloud, while making up his own version of the story. This is how the story ended:

Gavin: And then the tadpoles went out to eat -- at IHOP. They grew really big and turned into beautiful frogs.

I'm not sure if he really understood the IHOP connection with frogs hopping as well or if he was just putting his own life experience into the story. I like to think that he's really that smart though. :)

I'm sure the restaurant would love to use that in their advertising. Perfect campaign, don't you think?

Much love,

Books

I have added a couple of lists to the right column of the blog. One lists books that I am currently reading. Another lists books that I have already completed and would highly recommend. I have grown to love books that inspire me and teach me about life. If you have books that you would recommend, please leave a comment so the rest of us can check them out. And check back for other books that I add to the list. I know I have others that I want to post on there, but they are in our dark bedroom and Jeff is still sleeping. I don't think he'd appreciate me waking him so that I could post a more complete list this early in the morning. :)

Much love,

Soccer Stress

You ever have those dreams that happen literally right before you wake up? I had one this morning. And the irony of it all just had me laughing...and then thinking.

I was a stressball. I had gone to the parks and recreation department to sign the boys up for soccer. Only sign ups ended the day before. And all of the teams were full.

Oh. My. Goodness!

What in the world was I going to do?!?

It was stressful, folks. I was completely stressed out because I had missed the soccer deadline. My boys wouldn't be playing soccer that season. A total bummer.

And then, I woke up. To my boys and Jeff, who graciously let me sleep in an hour and a half longer than he did. (Thanks again!)

Soccer. Not really in our vocabulary these days. The only soccer talk I've had this year was done with my friends, who were a little bummed that all of their kids' soccer games were getting rained out left and right.

The dream got me thinking about soccer and just how much skill is required to play such a sport. Have you thought of it?!? You have to be able to run safely. You have to be able to stand on one foot while actually trying to kick a ball at the same time. And you have to be able to regain your balance quickly, and without falling, if another player bumps into you.

Sounds easy enough. And it is for most.

Be thankful if it truly is that easy for your little ones. We're still working on the above-mentioned skills formally before we can use them recreationally.

One bonus?!? I am not stressed out about soccer sign ups!

Yeah...I'm always looking for the silver lining.

Much love,

Belated Halloween Pictures

For many of you, Halloween is probably a distant memory. I really meant to post pics of the boys awhile back and never did. So, here they are! Better late than never, I suppose.

I am happy that we dressed the boys up for the church carnival the Wednesday before Halloween so I could actually see them all dressed up. Due to my mom's hip fracture, I was not actually home for Halloween. Jeff took some pictures before they went trick or treating though. And I think he's got a video too, but I haven't looked at it yet.

Garrett was a monkey, complete with fake bananas. He had the cutest little puffy belly. The week before Halloween, he kept saying he was going to swing all over Gavin. Monkey violence. Only here in Smithville! :) At the carnival, several people asked him if he was Curious George. He likes George, but was very clear that he was not George.

Gavin was Scooby Doo. You should have seen him running around the house before the church carnival singing, "Scooby Dooby Doo, where are you? Scooby Dooby Doo, where are you?" over and over and over. He was soooo into it. And he received many, many compliments on his cute attire. Not wanting to miss out on the prop like Garrett had with the bananas, Gavin carried a dog bone.

All smiles before going door-to-door for the candy.

Oddly enough, my boys don't beg to eat their candy after Halloween. They still have 95% of their candy and they play with it more than anything. Crazy, but true. I won't complain.

Much love,

Questions Answered

Thanks for the questions. And feel free to put more questions in if you haven't done so yet.

How important has the response to your blog been to you and yours?
Wow! That's a good one, Beth. It's really hard to put into words. It is overwhelming to think about so many people that I've never even met keeping up with my child's story. Praying for him each night. Hoping with us that he survives. There were so many days during treatment that the responses I received on this blog truly lifted my spirits and probably helped me stay strong for Gavin. Sounds kind of cheesy, but it's true. And I can tell you without a shadow of a doubt that there were many times during the especially difficult times of his treatment that I could literally feel the prayers of others. I think you would think that sounded crazy unless you had felt it before. I could feel the prayers and the power of them working through us. Amazing. We are beyond blessed to have such faithful readers of the blog.

And you mentioned me reading all of the comments, Beth. Yes, I read each and every one of them. They are sent via email to my inbox! I don't receive nearly as many these days like I did in the very early days of Gavin's diagnosis. But, I always love to hear from you all. Many of the regular commenters (like you, Beth!), I feel like I know -- even though we've never even met in real life! I especially love to hear how Gavin has made a difference in your life. It's special as a parent to read about how God has used Gavin's suffering for his glory in small and large ways.

1:27 -- Why are you posting at that hour?
Ha ha ha ha ha. Insane, I know. I started trying to figure out how to add a 3rd column to the blog. And I wasn't going to quit until I had it done. It took awhile to make it look decent. I'm not the most technologically saavy blogger on the block, I suppose. And when I finally finished making it look "presentable," I figured I might as well post something.

If you noticed that I blogged in the middle of the night the previous night, I can explain that one as well. I didn't feel well that evening and ended up going to bed around 7:30. I woke up around 1:30 in the morning, wide-eyed and bushy-tailed. So, I got up and blogged a bit before crashing again for the rest of the night. I'm strange like that!

Do you know about the hair donation process done through Pantene? Are they reputable? Do they accept less than 10 inches of hair?
As a matter of fact, I do. I donated my hair to the Pantene Beautiful Lengths program in 2008. I feel that they are very reputable. They send out a very nice letter thanking you for your hair donation after the fact as well. And yes, their minimum donation is 8 inches, which is part of the reason why I donated to them over Locks of Love (10-inch minimum). I had layers that were at least 8 inches, but some hair was 10. I hated to think that some of my hair would be wasted. I wouldn't hesitate to donate to the Pantene program again.

Go to http://www.pantene.com/en-US/beautiful_lengths.jspx to learn more about how they use donated hair to make wigs for cancer patients.

What's the latest with Garrett?
Last Monday, he had a check up with the neurologist, who was very impressed with the progress our little guy has made in physical therapy during the last six months. The doctor still feels that Garrett can hold off on having a muscle biopsy to determine the exact diagnosis that is causing his low muscle tone. He still feels confident that there is a diagnosis to be had. But, I think he's starting to think that maybe it is more mild that he previously thought. Time will tell. He hopes that by the time we would want/need to do a muscle biopsy that a simple blood test could tell us what is going on within his muscles.

The neurologist did recommend we have an EKG done on Garrett. The heart is a muscle and could potentially be affected by whatever underlying diagnosis Garrett has. We honestly hadn't ever thought of that before. I guess that is what we pay the neurologist the big bucks for, right? So, he had an EKG earlier today. And I'm pleased to say it was normal. :) Normal -- that word has such a lovely ring to it, doesn't it?

When do they start increasing time between Gavin's MRI scans?
He has been having scans done every 2 months since we ended chemotherapy in June. After the scan in December, we'll move to every 3 months. I'm not sure right now how long we'll stay at that interval. For a decent while, I think. Maybe a year or two. AT/RT is known to recur and is very aggressive when it does. So, they like to keep a close watch on it.

If folks want to do/buy something for your family for Christmas, what would you ask for?
Prayers. Seriously. Don't feel like you all need to do anything more than that for our family. You spoiled my kids last year for birthdays, Christmas, and every day in between. Pray for our family. That Gavin will grow old to be a true testimony to God's healing touch. That Garrett will never receive a diagnosis for his low muscle tone and that he'll grow up to be a normal adult. That both of our boys will be better for the different kind of childhood they were forced to have as a result of Gavin's cancer. That Jeff and I would end up with a better marriage than before this all started.

And if you really want to do something, consider donating to The Cure AT/RT Now Fund. I am passionate about this one! If Gavin were to ever relapse, we hope there would be better options to help him than there are now. Because options are slim and not so great right now for those that relapse. And they aren't going to get AT/RT figured out without the funds to research it adequately. That's a much better gift than anything you could ever purchase for us directly. And think of all of the other kids you'd be helping out! It's the gift that literally keeps on giving.

Great questions. Would love to hear from more of you.

Much love,

Your Turn

I'm in the mood to answer more of your questions. It's been awhile since I've done this. So, post a comment if you have a question for the Smith crew and I'll do my best to answer them all.

Much love,

Welcome To Holland

I took a class in graduate school that was all about counseling for Speech-Language Pathologists. There was a story from that class that always stood out to me. It was originally written for parents dealing with the birth of a child with special needs. However, I think that much can be learned from this -- for anyone dealing with a major life change that was anything but part of their original plan.

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say. "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.


Much love,

Scentsy Deadline Is Saturday

Just a friendly reminder...



If you are wanting to buy something from the Scentsy fundraiser (benefitting The Cure AT/RT Now Fund), you need to do so soon. The fundraiser will officially end this Saturday at midnight.

www.scentsy.com/tridener.

Important note: If you want the donation to go to The Cure AT/RT Now fund, please look for "Gavin Smith's Online Fundraiser" under the Open Parties option. Click "Buy From Party" that is listed next to it. Then start shopping.

Much love,

Question Answered

Several of you have asked if we will make more money if you click on the ads on the blog. The answer is no. Revenue is based on the number of impressions (page views) an ad receives. So, if you want to help make more money for Gavin, simply hang out at the blog more often. I'll do my best to keep it interesting. :)

So sweet of you all to want to help.

Much love,

Attitude of Gratitude (4th Edition - Ty)

43. Ty's prayer service and funeral mass were beautiful. Such a special soul -- remembered in such a special way.

44. The courage and love Ty showed throughout his battle with cancer. Most children suffer when they have cancer. But few suffer to the extent that Ty suffered. Horrible pain. Every day. For over 3 years. Yet, he was still a child. He played games -- and wanted to win every single time! He snuggled day in and day out with his Mommy -- something I know she misses deeply already. He smiled. He laughed. And he showed others what love really was.

45. That Ty is no longer suffering.

46. That Ty is in Heaven with Jesus, getting to be the child his earthly body wouldn't allow him to be.

47. That his family will be reunited with him one day in Heaven. What a day that will be!

48. A friend like Toni. She's amazing, people! A living example of what a mother should be. Everyone that knows her knows what an extraordinary bond she had with Ty. Just days before he died, he told her, "Mommy, I love you so much my heart is going to break." How many 6 year old boys love their Mommies that much?!? And if they do, how many tell them about it in such words?!? Luckily, Lyle was with Ty when he said this and he got it on a video message that he texted to Toni. She showed me the video. Priceless.

49. Those who serve in the military. I was reminded at Ty's service just how great these men and women are. I've mentioned that Toni and Lyle are both in the Air Force. What an amazing sight it was to see all of the men and women in uniform there to support Toni and Lyle. And serve they did! From helping people get seated to passing out balloons for the balloon release to helping with the lunch -- amazing support to the family.

50. Ty's passing obviously makes me that much more grateful that Gavin is alive. It is an unspeakably sad reminder of the reality of pediatric cancer. But, a reminder that I need to savor each moment I have with Gavin -- and all of those that I love -- with greater intensity. We do not know what tomorrow holds. So, we should make sure that we hold each other close today.

Much love,

Under Construction

The blog is under a bit of construction. I'm sure most of you have noticed the new ads on the sidebar. I recently accepted the invitation to join BlogHer, which includes having ads on the blog. I need to change the layout of the blog so that the ads are on one side and the usual stuff is on the other. Bear with me as it's changing. Hopefully we'll all like the new look in the end. :)

And I'm sure people are wondering -- yes, there is a financial benefit to having ads on the blog. I wasn't sure how I felt about that at first. Then I opened more of the medical bills that just don't stop coming. I blog a lot about Gavin. So, his medical fund will benefit from the addition of ads. I hope you all understand where I'm coming from.

Much love,

Shoes

Toni and I were talking about this poem yesterday. Thought it was a good time to post it.

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
I can tell in others' eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.

Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.

Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.

~Author Unknown