Giving: Johnny's Skateboard Legacy

Giving: Johnny's Skateboard Legacy

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The Story of T

This is the story of Thomas.

He has leukemia. Actually this will be his second relapse, and third time to battle the most 'common' type of childhood cancer - leukemia. I knew Thomas before I even met him. Let me explain. Lisa, Thomas' mom went to school with Mike at the University of Texas and for a brief time one summer, lived at what is now our house, but back then it was just called 'the beach house'. Over the years Lisa kept in touch with Mike's grandparents, and one Christmas I remember sitting at Mike's grandmother's kitchen table as she read her Christmas cards to me with tears in her eyes. She received a card from Lisa and her husband Gary saying that their three-year old son, Thomas had been diagnosed with acute lymphoblastic leukemia. As Mike's grandmother wept, I tried to imagine what it would be like to be in Lisa's shoes -- I couldn't though. No one can.

We followed Thomas' story as he valiantly received his scheduled 3 1/2 years of chemothereapy treatment. Our families kept in close touch with each other over the years, especially after Johnny was diagnosed with leukemia in 2005. By the age of 8, Thomas was considered a long-term survivor (cancer/treatment free for 5 years), unfortunately it wasn't for long. Thomas relapsed when he was eleven years old, and because of the type of leukemia, the protocol didn't require a bone marrow transplant. This time the protocol was only 2 1/2 years and things were going well when suddenly, while still in treatment, Thomas relapsed again, only this time in his central nervous system (CNS - spinal fluid).

At the age of 13, with most of his life spent receiving chemotherapy, Thomas is fighting the battle against leukemia again. This time his best chance for survival (40-50% - which is considered 'great') is to have a bone marrow transplant. Our hearts ached to hear of Thomas' relapse. It's something only a parent who has faced this battle with cancer for the first, second or third time, could understand. No amount of photos or writing/blogging could take the place of first hand experience.

So I asked Thomas if I bought him a video camera, would he take videos of his journey and allow me to post them on our site, to try and convey to everyone, on some level, what it's like to be a 13-year-old kid battling cancer for the third time? He said yes. So here are the first few installments of the Story of T and what it's like to hear you have a 40-50% chance of survival, when you're 13 years old. It's hard to imagine, I know. But Thomas and his family are going to show us what treatment looks like and why we need your help to raise awareness and funding for cutting-edge research and improved treatment options for our children battling the number one killer by disease - leukemia.

Let me know what you think at: Julie@JohnnyKicksCancer.org

Godspeed T. The world is watching and we are behind you.

Thomas and the City of Austin Proclamation that September is Childhood Cancer Awareness month.

If you would like to follow The Story of T, please go to JohnnyKicksCancer.org website.

The JohnnyKicksCancer Foundation

A Year Ago...

...Johnny and I spent our last night together. It doesn't seem that long ago. Of course I've thought of Johnny every day since then, and I usually remember him laughing and running around, just being a kid. It seemed as though he always wore a big smile, and there are so many good times to think of. I've tried not to think of his time in the hospital, but somehow that last night always seems to creep in. I'm grateful for every minute I had with Johnny, and that night a year ago is no different, but he was so sick, and so tired. He had been fighting so hard for so long, and I knew (even though I tried not to admit it) that he just didn't have much more fight left. Johnny was too sick to sleep that night so we stayed up and watched movies and a surf contest on the internet. He pretended to be interested, but often I would look over and catch him staring at me. When I would ask if he needed anything he would shake his head. He couldn't talk much, and as usual his thoughts were completely hidden. When Johnny finally fell asleep around 4 or 5 in the morning I stepped out to collect my own thoughts. I had been praying to God for years to help Johnny, and after he relapsed all I wanted was to get Johnny to a bone marrow transplant, and a cure, but it always seemed as though he had one hurdle after another placed in his path. It felt like he was in some weird type of tug-of-war. There were times while we were in the hospital that Johnny had almost died, and each of those times was horrible. Each of those times he pulled through (often to the amazement of his doctors), but the thought of him dying like that was more than I could bare. When I stepped out of the room for the first time I didn't pray for wellness, but only asked that if it was His will to take Johnny that he wouldn't continue to suffer. When I got back to the room Johnny was still asleep. I asked the doctor not to wake Johnny when she made her morning rounds because he finally seemed to be getting some rest. Not long after that Johnny quietly slipped into a coma, and passed later on the 23rd. Looking back on that night I think he was ready to go. I think he was just waiting until Julie and I were ready to let him go.

Johnny,

You were the bravest person I have ever known. I love you, and I miss you very much.

Love,

Dad

Dream Vacation: Deep Thoughts by Mike and Joel

Costa Rica has always been Mike's dream vacation. Less than 12 hours into our trip and after two surf sessions I asked Mike and Joel what they thought about the dream destination surf trip thus far:

I Miss Costa Rica

I know techniquelly I'm still walking distance to the beach, and it's just as hot and humid here as it is in Nosara (okay, it's A LOT hotter in Houston right now), but I miss being there none the less. There is something to say about the jungles of Costa Rica and ice cold beer at 3pm... mmmm... beer....

Here is where we all hung out most of the day:

The Beach Cafe

Our group pretty much filled the place up everyday... They have the best veggie sandwiches and french toast!!!

COOLEST DJ ever

I'm not even sure if they are called DJ's anymore, but this guy rocks! If you live in Houston, you can listen to AD on 94.5 and if you have Sirius/XM radio you can hear him on Faction or Alt Nation. You can also follow AD and his wife, Tara, on Facebook too.

NEW SHOES

This came out right before we left and didn't get a chance to post before the flight:

http://etnies.com/blog/skate/collaboration/

We are blessed with amazing friends and family!

Just got home from Costa Rica late last night. It was incredible!

I will update more about our trip this weekend -- hugs to all, Jules