Today David and I decided to start a blog about Jamey's leukemia. It's been ten weeks since he was diagnosed, and it's gone by very quickly and very slowly at the same time. I don't think we could've made it (and stayed somewhat sane) without the tremendous amount of support that our family, friends, and community have given us.
I will start at the beginning for those of you who don't know our history. On May 7th I took Jamey to the pediatric emergency room at Shady Grove Hospital because he had a terrible pain in his neck. They took some tests there, and a very astute doctor (Dr. Orenstein) told me he thought that Jamey might have leukemia. From there, Jamey, David, and I went to Children's Hospital (at 3:00 am), where the diagnosis was confirmed. We are so very lucky that our doctor at Shady Grove was able to make the diagnosis because the leukemia had apparently just started with Jamey. This helped him with a very good prognosis.
For the next week, poor Jamey had to deal with needles, a surgery to put a port in his body (to put the chemo in and take blood out), and his first chemo treatment. In addition to this, he had to face his own mortality (at 10 years old). It was horrible. None of us could wrap our brains around the fact that Jamey has cancer (we are still struggling with it). We were lucky, though, to have so many visitors to keep him busy so he couldn't focus on everything they were doing to him. One day he commented to us that he knew he was going to get better because he had so many people who loved him. His brothers sent him pictures and came to the hospital a lot, as did his teachers from Rock Creek Forest.
Since then, Jamey has gone through weekly chemo treatments. We were going to Children's Hospital in DC for a while, but started going to the outpatient clinic in Rockville this week. That was a good decision because our stress level went down a lot. As we would go to the hospital, there was a discernable change in Jamey. He would shut down - it represented a terrible place for him. He did not feel that way when we went to the Rockville clinic.
The chemo treatments have been hard for Jamey, although he has taken it all with a positive attitude. He throws up a lot at night, and doesn't feel well much of the time. He is trying really hard to do what is right, even though it doesn't always feel good to him (certainly the medicines don't). In addition to the chemo he has to take at the hospital, he has two chemos at home that I am giving him. One is a pill, and the other is intraveneous. It's a lot for a little body.
Watching him go through all of this, I can really say that Jamey is an amazing kid. He is strong, determined, and has a wonderful sense of humor, even in the most difficult of situations. I couldn't be more proud.
Noah and Coby are doing wonderfully. When all this started, David and I made a decision that we would try to keep their lives as normal as possible. I think we are being successful. Noah made the Classic soccer team (yeah!) and will continue to focus on that, and Coby will start his turn at soccer in the fall. They have been very understanding about our focus on Jamey; Noah likened it to when he had his tonsils out and everyone focused on him. They have been very flexible, going with the flow when necessary. Coby even spent his birthday evening at the hospital happily - wanting to be with Jamey very much (who was in for a fever). They are just wonderful.
I will try to update this blog weekly (or bi-weekly) so you can see his progress. Please add your comments, etc., if you want.
Take care,
David and Karen