Tuesday, May 27, 2008

Thank you, Angie!

My friend Angie sent me a link to a YouTube video with the Wynonna version of Testify to Love. Thank you so much, Angie! I am going adding the clip from the TV show that left me in tears here, and will put a permanent bar above with the video Angie found too. I love this song. I love this message. Thank you, Angie!

If you want to see another gorgeous video interpretation of this song, click here.

Monday, May 26, 2008

Back from St. Jude for now

I took Chet down to St. Jude on Thursday for his Friday appointment. His counts have begun to fall very quickly again. He was at 64,000 platelets last week, and by Friday was down to 39,000. He is getting pale again, and has new bruises, so I suspect he will need a transfusion by the end of the week. We are hoping he will stay high enough to finish up this week in school. He has several events planned for this week that he really wants to be a part of, so we are doing everything we can to keep him well enough for it all.

Beth is not a match for Chet, and it doesn't look like I am as good of a match as the tests 8.5 years ago showed. (HLA testing has become a lot more sophisticated in the last decade.) The next time we go down there we are bringing Todd to make sure he really is a good match for Chet. We are praying a rather desperate prayer that he is. I keep thinking of how his doctors told me when he was 2 that within ten years the technology would be available to take a person's marrow, "clean" it, and give it back to them to cure diseases like this. How I wish that technology would hurry and get here.

This was my favorite photo from this trip. Beth grabbed Chet's fingers as we walked back from the cafeteria, and kept saying "I got your fiiingers!" It was a light-hearted moment that made all three of us laugh, as well as some of the other people in the halls who overheard her.

Everytime we go, Chet is given a basic check-up that includes measuring his head. We love to tease him and tell him that now we have proof he is getting a big head. His nurse was laughing too, but she made sure to tell me to make sure you all know "his head is NOT too big." Chet is thinner than he was last month, but I think that has to do with the fact that he is sprouting up again. The boy is so tall!
After the appointment, we had to wait until 2pm to get some paperwork and get on the road. We decided to hang out in the family center at the hotel, where Chet spent his time playing X-Box.
Beth entertained herself in the play kitchen area, and I sat in some very comfy leather chairs and got some design work done. The TV was on the Hallmark channel, and they played an episode of Touched By An Angel, which was one of my favorite shows when it was on the air. This particular episode was about a little boy who was dying of cystic fibrosis, and was trying to get his mother (Wynonna Judd) to finish a song she had written called the 151st Psalm. The show made me cry my eyes out, which was easy to do at that moment anyway, but man. It was rough. However, I loved the song and am hoping to find it online somewhere. (I found a cover of it by Avalon. It is called "Testify to Love." I do like Wynonna's version better, though... I will have to find that. I did add Avalon's version to the player above for the meantime.)
This is a table in the gameroom that Chet wants. He wants it portable, though, so I think I am going to ask Jack to cut a board for me and then I will paint the chessboard on it. He wants to play outside and be able to keep his pieces on the table without worrying about the cats and wind knocking them over, so maybe we will figure out a way to carve him some big wooden chessmen as well.
The art all over St.Jude is so touching in so many ways. Each time I go I see new pieces that really catch my heart. This one is in the Transitional Trials Unit's hallway, and while the sentiment is so well-spoken and sincere, and there is a part of me that sometimes says "I could write that", it makes me sad that any child has ever had to feel this way.

The drive there and back was uneventful, but I did hear this song on the radio, and wanted to post it here. I had never heard it before, but it really speaks of the prayer support Chet has had through this, and it is exactly how I feel about getting him through this. I can't seem to get it to post within this message, so I added a player up on top. There are some other songs that mean a lot to me as a mother of a sick boy that I am going to add to it as well, but for now feel free to go listen to "Praying You Through the Storm" if you would like.

He will be going back at least once every month through this summer, and if his counts don't stabilize again very soon it will probably be more often than that. We are going to do the only thing we can do.... keep him safe and healthy, keep life as normal as possible, and pray for more miracles for him. I will do my best to keep this updated. THank you to everyone who continues to keep him in your prayers.

Wednesday, May 14, 2008

New Counts

I took Chet in for counts last week, and they have begun to fall again. His red cells and white cells are down as well. He is still looking alright and feeling good, so we will be keeping an eye on his levels again. He goes back to St. Jude next week for some more tests to see how his PNH levels are.