Saturday, June 28, 2008

Home again, home again, jiggety jog

(I had pictures from the hospital to add to this post, but I had computer problems over the weekend and I think the file of those pictures was lost. If I find them I will come back and add them. I originally typed this up Saturday night.)

Chet had a couple of appointments at St. Jude this week, which had us driving down there Thursday morning, and coming home last night. We are a little tired... :0)

His first appointment was at the dentist.Last month I had asked for an appointment there because the dentists here that take care of kids were really leery about seeing Chet with his bleeding concerns. I had seen a cavity on a tooth, and I noticed that his permanent molars have come in but his baby teeth are still firmly in place back there. So he had some x-rays, and after an exam the doctor declared him cavity-free. (The cavity tooth must have been the one that fell out a couple of weeks ago.)That made us all happy. Who wants to deal with filling cavities anyway, but he certainly doesn't need any extra cooties floating around his system.

The next day was his check-up. His platelets are at 36,000 still. It would appear that the 40,000ish mark has become his most current "normal." His neutrophyls are down a bit (immune system) but not to the critical point where we have to rush him to the ER if he gets a fever. He did pick up some ringworm somewhere, and he has some mosquit bites from a couple of weeks ago that he needs to keep clean to avoid infection, but other than a case of PNH and AA he is remarkably healthy. He is feeling extremely fatigued lately. He has been taking naps every afternoon, sleeping early and late, and has permanent black rings under his eyes.

Todd came along for this trip so he could get his blood drawn for HLA typing. When he was born we were told he was a match for Chet. We were also told I was a match for him, and now it appears I am not. We are just praying that Todd really is. Todd barely flinched at the poke, but Chet enjoyed it tremendously... lol...brothers.He thinks Matt should have to come next time and get tested again just so Chet can laugh at him too.

Todd had an extremely wonderful time at St. Jude. I think it is a testament to how much the staff and directors of the hospital truly care about these kiddos that he came away feeling like he had gone to Disneyland. He loved the rooms, loved the walls in the hospital, talked to everybody he met like they were his new best friend, and in general treated it all like a huge vacation.... albeit a very short vacation completely encased within 10 hours of driving!

We won't know the results of the HLA typing to see if Todd is a match for about two weeks. Right now we expect to go back to St. Jude in September. Martha said if Todd is a match they will probably go forward with the bone marrow transplant. I am not going to begin to venture to guess WHEN they might decide to go forward with it.

I am also going to stop reading statistics and percentages about BMT's and PNH. I know better than to do that, and yet I couldn't seem to resist. I am just going to remind myself that he is in the best care he can have. I trust his doctors completely.All of the BMT's his doctors have performed for PNH have been successful. I have got to remember the positive and not let myself get emotionally sucked into anonymous statistics.

Chet has decided to take up pottery. We were in a neighboring town two Saturdays ago when he saw this chess table in the window.

We went in to ask about it and found out it sells for $400. That is way too rich for our blood, but the good news was he could take the class to make one himself for $60. Now that we can find a way to pull off. He will start next week and learn the basics. In the end he will have made his own awesome chess table and will have made the chessmen for it too. I will post updates on it as he gets it together.

I will be back and post more when he hear the news. Here are some other photos from this trip to Memphis. Take care!

Wednesday, June 25, 2008

A prayer request

I am taking Chet to St. Jude tomorrow for some dental work and tests to see how he is doing. We are bringing Todd so he can be tested for HLA typing to see if he is really a match for Chet. Please pray that the tests will show that Todd is a match for Chet. He is the only sibling left who could possibly match,and the transplant success rates are so much better with a matched sibling donor.

Thanks, everyone.


Thursday, June 5, 2008

New counts

I took Chet in for counts this week. He had been exhausted for several days, so we were expecting a low number. 36,000 isn't a high platelet count, but they had only fallen 3,000 since his last doctor visit. Not bad!

Then Jack said, "Maybe he is just going through a new growth spurt." That would explain why all of his jeans are 3 inches too short and he is suddenly looking at me nearly eye-to-eye.

Sometimes I have to remind myself that there are "normal" reasons for some things like being very tired. And now I have to go shopping to get him some new pants.