Monday, June 19, 2006

We Speak for Ourselves and Others

June 19, 2006

Erin's party was blessed. We got much needed rain on Friday night and Saturday morning, and plentiful sun by party time. I have said it before, but it bears repeating: Erin has great friends, and we never take for granted the time we get to spend with them. Thanks to everyone for making it such a special day.

But On To The Business At Hand. . .

Erin and I leave tomorrow for Gold Ribbon Days in Washington, D.C. We plan to make the best of our time and hope to bring a piece of our lives to the men and women who make our laws and govern our country. You all know our story, and most of you agree that we have a story worth telling. I want to introduce you to some of the young cancer patients we have met along the way.

The first is Hannah. Hannah lives in Tomball with her parents and older sister. She is one of Dr. Russell's patients and was diagnosed at age 2, right around the time Erin was diagnosed. She had a very rough time with treatment. She lost her hearing and one kidney. The other kidney struggles. She spent a lot more time in ICU than Erin, but like Erin, always left the hospital with a beautiful smile on her face. I remember that she wore the cutest outfits with matching hats that her father sewed for her. She has just learned that her permanent teeth have no root development because of the harsh chemo she received. Her family hopes that the scans she has scheduled for today and tomorrow will confirm the good news that she is still cancer free.

Ryan, AKA Batman, is another one of Dr. Russell's patients. This boy charms all the nurses at Texas Children's and attacks the world each day with vigor and a terrific sense of fun. Ryan is just drawing near the end of his treatment and is also having scans this week that will hopefully bring tears of joy and relief to his parents. Ryan has had to follow his own path because his body couldn't produce enough stem cells to risk transplant. This has meant extra rounds of chemo instead of transplant. He has also had to have around 50 transfusions just to make it through to this point. Imagine having to keep up with a high energy superhero who is continually on the low side for platelets!

We'd also like you to meet Colby. Colby is just finishing the second leg of his tandem stem cell transplant this week. His mom and dad hope they can make it back to College Station by Wednesday with their precious cargo. The pictures on his website tell the whole story of a much loved little boy who is fighting his hardest to throw off the cancer monster and return to what children do best: playing.

Our friend Razak, with his sparkling eyes and upbeat attitude, seems like he has licked the beast. He has welcomed a new little brother in to his life and is ready to put cancer behind him. We think he is a great model to follow.

There are also children with compelling stories whom we have not met, but whom we follow because we share something in common. Christi Thomas is Erin's age, with Erin's spunk. She was diagnosed right around the time Erin was, but unfortunately has never been able to enjoy even a day where her doctors declared that she was No Evidence of Disease. Despite that she leads a full (full with a capital FULL) life and meets her challenge head on. Her website is one of the spiffiest around. Since April most of the new news has been put on the link marked Blog. Brian from Oklahoma is a tad younger than Erin but has had a very similar experience and is currently on the same roadmap that Erin is following. Spencer lives in Canada and his father's blog makes you laugh even in the face a Spencer's numerous set backs. Sarah also has a parent who captures the pediatric cancer experience eloquently.

I know you can't spend your entire day in front of the computer, but I'd like it if you would take some time to browse. We are representing these children and their families when we fly out tomorrow, and I want you to know who we are speaking for.

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