Monday, June 14, 2004

 

100% Donor!

That is the news for the day here. We got a call this afternoon from Becky, the transplant nurse. Devin's bone marrow came back at 100% donor. This means that his body is still producing Ryan's healthy bone marrow. This is just simply FANTASTIC news. We are thrilled.

Devin is off at Camp Horizon this week and will be back home on Friday. After I worm details out of him, I will share what he did during the week.

posted by Devin's Mom 11:54 PM

Wednesday, June 09, 2004

 

Woo hoo!!

We are now one year post-transplant!!There is a new picture of Devin, taken on this wonderful anniversary, in his album. There is a link on the left.

posted by Devin's Mom 11:06 PM

Tuesday, June 01, 2004

 

One Year Later

Okay, so we are actually a week off of our year date but close enough. It has been one year since Devin's second bone marrow transplant so it was time for his big work up.

Since we were up at Vandy on Friday, shooting a video, we did a few of the tests then. Devin had a chest x-ray, some kind of bone x-ray, some pulmonary tests and a cardio echogram. So far, the results on everything look fine.

Today we had the big bone marrow draw, a skin biopsy, blood work and a bone density scan for a study. Devin was pleased that rather than getting versed and morphine for the bone marrow, he got his beloved white medicine. He still reacts when the bone marrow is aspirated but not nearly the way he does with versed and morphine.

Dr Frangoul is very pleased with Devin's continued good progress. I would say that we are cautiously pleased as well. Having been bitten once while getting complacent about Devin's progress, we tend to be a little more reserved although we are also so very thankful for how well he is doing.

Devin has cataracts in both eyes, something that was not totally unexpected. His right eye is larger than his left eye. I got to use the eye light to look into his eyes and see them myself. We are getting an appointment with a pediatric opthamologist who will follow Devin and moniter how his eyes are. It is too soon to say what will happen but surgery to remove them at some point in the future is a possibility.

While Devin was getting his blood drawn, I happened to be standing near his hip and the angle was just right for me to see into his mouth. The boy has teeth growing out of the roof of his mouth! He has a baby tooth next to his front teeth that is a bit loose and has been just a bit loose for some time. The adult tooth is not pushing it out of the way because it is about 1/2" behind it, growing in the roof of his mouth. On the other side of his mouth, that baby tooth has fallen out long ago but no tooth has replaced it. Again, I now know why, because it is growing about 1/2" behind. Devin can't get orthodontic work done at the moment so there is not much that can be done. I am going to get him an appointment with his dentist to look at the situation and see if the one baby tooth needs to be removed or just leave it alone. Once Devin can see an orthodonist (probably in 6 months or so), then we will go see him.

We had a bone density scan today, part of a study looking at the effects of it with children who have had a bone marrow transplant or it could be children who have had radiation. It has been more than a year since we were told about the study so I don't recall exactly why they are looking at it. In any event, it is a painless scan that can help gather information so we agreed. We arrived down at Radiology for our appointment and the receptionist told us that it was not for 2 more days. What?!!? After making several calls, trying to track down paperwork and some frustration on my end, we were able to have the scan done after all.

Donna, the lady who filmed the videos for the new opening, called and wanted Devin to take part in a new video. Devin spent the day down at Vanderbilt on Friday with a film crew, Champ (the Vandy mascot) and Donna shooting an informational video. This video will be a few minutes long and will show patients and their parents around the hospital. Devin really enjoyed filming. At one point, the siblings came down to be "extras" in the background. Champ, the mascot, also works with the Nashville Sounds, a baseball team. He offered to get us tickets. Wasn't that sweet of him?

I have uploaded some more pictures in the Online Photo Album They are in the section for our trip and I am about to add some to Devin's album as well.

Next week Devin heads off for Camp Horizon, an American Cancer Society camp for kids with cancer. He went in 2002 and loved it. He has been looking forward to going again.

I should have some results of all his tests by later in the week and will post them as they become available.

posted by Devin's Mom 8:16 PM