Nathan Gilbert

Welcome to Nathan Gilbert's (BD 8/12/00) Web Page. It has been provided to keep everyone updated about Nathan's battle with Fanconi Anemia. Nathan received an un-related donor 5/6 cord blood transplant on April 20th, 2005.

Journal

Wednesday, March 26, 2008 2:41 PM CDT

Day 1070

We have just returned from Minneapolis where we completed our 3 year, post bone marrow transplant, clinic visits. It won’t actually be 3 years until April 20th, but with Nathan’s Spring break, it worked out well for our scheduling purposes. It was nice seeing the staff at the BMT clinic, they are all such nice people, especially Dr. Wagner; Nathan really likes him.

The big thing this time was liver function. Nate’s blood work had shown an extremely high elevation of liver enzymes for quite some time, and he had a liver biopsy last summer which confirmed graph-vs.-host disease. So, we started him on twice daily doses of Ursodiol, (a medication derived from polar bear bile, designed to essentially flush out his liver). Initially, it didn’t appear that this was helping the situation, but after a few months, it finally kicked in. The best part of this trip was canceling the follow-up liver biopsy they had originally planned for him.

Next on our list was Nathan’s growth. He has been receiving a growth hormone injection each night before bed, and his rate of growth hasn’t exactly been all that great. Monthly monitoring of his blood work has actually resulted in decreasing the dosage several times, and we were beginning to wonder if we should still be doing this. However, since his growth is improving, (although only slightly) and since it can improve muscle mass and bone strength, they determined that we should continue doing this for him. They had us stop by Radiology for a bone age X-RAY, and a DEXA scan, (bone density scan) just to make sure that his skeleton is strong and healthy. That didn’t take too long, and Nate is quite a pro at holding still for these sorts of things.

A very important part of transplant follow-up for Fanconi Anemia patients is monitoring for oral/throat cancers. The ENT specialist didn’t think that we need to be too concerned about these things cropping up, yet. However, ongoing check-ups for this will be done at least every 6 months, and as of now, everything looks fine. He also referred us to an auditory specialist in Oklahoma City for Nathan’s hearing problem, (his left ear bones appear to be fused together, and may require surgery). We are confident that the specialist here in Wichita has correctly diagnosed Nathan, and that he would be a good choice for any surgical intervention, if need be. However, before going ahead with anything we may want to get another opinion, just to reassure ourselves about everything.

The most time consuming part of these visits was the glucose tolerance test. They started an IV, and drew blood at specific time intervals, to determine if he has any diabetic/ blood-sugar issues. His levels on his monthly lab work have never been problematic, and unless this shows a big issue, it may be the last one we sit still for.

After we were finished with our medical visits, we also made a stop at the Mall of America for amusement park rides, lunch at the Rainforest Café, and a little bit of shopping. The big hit of the trip was the Easter egg hunt at the Ronald McDonald house; there were hundreds of eggs and tons of eager kids ready to scoop them all up. Nathan had a great time participating in this. He also spent quite a bit of time in the arcade area playing video games, driving race car simulators, and trying his luck at the claw machine. It was great to see him having such a nice time!

Thanks for following us on our journey!

Nathan, Chris, & Stan

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