April 2008 Archives
Wyatt is doing well although he is really starting to feel lonely. We went to the zoo this week. He noticed all the other kids and he told me that he wished he had some friends. He said that he knows he has me and Owen but he would like some friends who are taller than him. It was heartbreaking. I don't regret our decision to keep him isolated as much as possible right now but it is certainly sad to hear him express how lonely he is some days. Hopefully our trip to Minnesota will bring positive news and he can start playing with his friends again.
Steve and our friend Brendan have decided to do the Sandman triathlon here in VA Beach to raise money for Fanconi Anemia. We have not had much time to spend thinking about Wyatt's future as we have been so focused on getting through each day one at a time. But the truth is that Wyatt is going to face many more challenges in his life due to his illness. The Fanconi Anemia Research Fund raised 1.8 million dollars last year. 85% of that amount was raised by families. Many thanks for your generosity! Thank you to everyone who donated through our web site, to Cameron's Jump for FA fundraiser and to the fundraiser at the Texas Roadhouse in PA. When we started doing research on fundraising and the dollars needed for the research necessary to improve Wyatt's life, we were startled to learn of the amounts allocated to cancer research as a whole. It was shocking, so much less than we could have ever imagined. It made us realize just how important the fundraising efforts are to the advancement of cancer research and treatment. It is very scary to think about where we would be today if there were not so many people out there working so hard to raise money. For example, Wyatt was only the 18th person to receive his transplant protocol. The transplant success rate for FA patients has improved greatly in the past few years due to the discovery that lower levels of chemotherapy and radiation (two things that FA patients cannot tolerate due to their illness) could be used and still achieve engraftment. So thank you for running, walking, jumping, volunteering, sponsoring or whatever you have chosen to do to support your friends, family and neighbors fight these life threatening diseases. What we and so many other families need is hope, money and miracles.
I will post more about the triathlon closer to the race date which is in September. And as always, thank you for thinking of our little guy.
Wyatt had a good clinic visit yesterday. His counts are hanging out in the same place which is okay with the doctors. He gets another break until his 6 month post transplant biopsy in Minnesota on May 6th. He seems to be feeling great and he looks so much more like himself. We shaved some of his 'extra' hair growth that was caused by his medications. As I have written before, Wyatt is the champion of taking medicines. He actually seems to like them. But he had one medicine that he truly disliked. In the beginning, Steve and I looked like chemists in the kitchen creating all sorts of additives to help that medicine go down...and sometimes it still came right back up. Well, as of yesterday, Wyatt is down to only 2 medications! And one of them is only twice a week! And the 'yucky' one is gone, hopefully for good. So he has been in a celebratory mood and telling everyone who will listen that the medicine is gone.
Wyatt had his first play date with his cousins last weekend. It was the first time Wyatt has seen Cameron and Shane since October. There was much anticipation and we expected a crazy first greeting but we wrong. They were all sort of like, "hey. what's up?" Anticlimatic for us. Everyone was very calm and collected much to our surprise as they have been apart for so long. But I guess what we adults never thought of was that they were never really apart in their hearts and minds. When Shane received his Artic Cat for Christmas, he immediately said that the passenget seat was for Wyatt. We were so worried that they would lose their close relationships but we were very wrong. They've always had a place holder.. They never doubted that things would get back to normal someday and they just needed to wait it out.
Wyatt, Owen and I spent some time in the Outer Banks this past week with Steve's parents. It was a great change of scenery for the boys. I took Wyatt out for the first time. His first experiences back in the land of the people. He was thrilled to hit the candy store! The highlight of his week! It will be so nice when we get the all clear to move about the cabin freely.
Well, we are again hoping for an uneventful month. It will be great if we can get through to the six month mark with no issues.
