February 2008 Archives
I wrote in a few entries about another little boy here in Virginia Beach who was diagnosed with Fanconi Anemia just a few weeks after Wyatt. He went to Minnesota for a transplant in January. His name was Trey. I know that many of you were touched by his story as well. And it is with a heavy heart that I write to you that Trey lost his fight with FA last week. A sad day for a very sweet, brave little boy...
Wyatt's biopsy results were very positive. He is still 100% grafted with 60-70% new cell growth (the target for a healthy 3 year old is 85%). These results are about the same as the 60 day biopsy results. My initial thoughts were concern over no changes in new cell growth but the doctors have assured us that these results are good news. And we have learned to follow their words...even if it doesn't always make sense in our brains. This stuff is so far beyond our comprehension level that we decided long ago that we will try to remain calm and positive until someone tells us otherwise. This is often times easier said than done but we try. So, their story is 'good news' and that's what we're stickin' with.
Wyatt is still feeling well and seems to have lots of energy...all those new red blood cells at work. We are still living in lock down and trying to keep him isolated from all the illness that seems to be going around now. We are looking forward to the day when he can start living like a normal three year old. He has been in 'the bubble' for so long now that I think he has forgotten what it's like to play with all his buddies. This is great in some ways as we don't have to spend a lot of time explaining why he can't see everyone but sad in some ways because it reminds us of the many ways this illness has changed his life. But any day that we are not in the hospital is a good day. And any day that Wyatt is running around like a crazy three year old is a day that we feel thankful and hopeful. Wyatt is such a little fighter. I am always amazed by his great attitude and I am always amazed that his spirit has not been broken by this experience. He is still as funny and happy as ever.
Thank you for following his progress. And thank you to everyone who made it out the blood drive this past Thursday at SATURN of VA Beach. The Red Cross considered it a success. As always, we hope that any of you who are able and available, will get out and donate blood whenever possible. There are lots of little (and big) people out there who need it! I will continue to post about Wyatt's progress. He is scheduled for his 6 month biopsy on May 6th in Minnesota. Until then, he will visit the clinic here at The Children's Hospital every 2 weeks.
Today is actually Day 100 for Wyatt. Day 100 is an important milestone for BMT patients although Wyatt is a little ahead of the game right now because he had his biopsy early (exactly a week ago). We still do not have the results from that biopsy but they should come in any day now. We are anxiously waiting for that call from Minnesota. Even though the results were positive at his 60 Day biopsy, we still feel nervous and anxious. There is a lot of waiting in this process and I have grown to really hate it. I suppose those feelings of anxiety will never go away. From what we understand, complications can occur at any time even years out. Those thoughts weigh heavily on your mind some days especially when you are waiting for test results. I am not sure if we will ever truly reach a point when we can exhale. Sometimes I feel like we are always going to be looking over our shoulders and hoping that whatever is back there doesn't catch up with us. I hope that Steve and I can somehow find a way keep Wyatt above this emotional roller coaster so that he can go on living like a normal 3 year old...and 4 year old....and 5 year old. He deserves some peace and happiness!
As I have written before, Wyatt has been so patience and understanding through all of this craziness. I think he might have accepted things much earlier than we did. But he did reach a breaking point during his last procedure. He was put under for his last biopsy and central line removal and when he woke up, he was not very happy about things. We had one final thing to do before we were released for home, a chest x-ray. This would normally not be a big deal for Wyatt - he would call it "a piece of clake" (he adds a lot of L's to his words right now). But this was not a normal day and Wyatt had decided that he was fed up with this nonsense. So, he flat out refused to do the x-ray; turned his back on us, put his nose in the air and said, "NO!" Unfortunately, 'no' was not an option and we had to hold him down for the x-ray. As soon as it was finished, he sat up and gave the technician a big ole raspberry...just inches from her face. Of course, we had to reprimand him but inside we were thinking, you go little buddy! Let's just give this whole thing a big, fat raspberry!
Coincidentally, today is also Owen's first birthday. Our own little angel (and sometimes devil!). We are so lucky that Owen came into our lives when he did. He has been such a fun and sweet distraction from all of the stress. And he has truly been a miracle for his brother on so many different levels!
