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.


Jenn

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.

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.

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.

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.

Chet's first diagnosis

Jack asked me to find a way to add the album I made a few years ago about the first years of Chet's initial diagnosis and treatments. Chet was two when he was first diagnosed with aplastic anemia. I made this album a few years after his initial diagnosis, and even at that point it was very emotionally draining to create it. To this day, Jack has never read through the whole album. It still makes us cry. But I made the album for the same reason I now blog about his new disease; so Chet will have a written record of the trials and blessings this journey has given him. The slideshow is down on the bottom of the blog.

Update from March

I meant to update a lot sooner than this, but we went home unexpectedly, and I have been so busy since then! Now that Easter, revival, my birthday, and some key deadlines have passed, I am working on getting all my misc items caught up. Here are some pictures and the rest of the story from our last trip to St. Jude, and a current update.

When I last blogged, I told you about trying to follow the ambulance across Arkansas. Jack was driving down to meet us in Conway to bring me Beth and some clothes, and I snapped this shot of Chet in the ambulance as we waited for him. They had him buckled in completely, which made me feel a little better knowing he was flying down the road at approximately 100mph!

These are the pictures from the IV lesson the social worker came to give Chet. Although he wasn't a very cooperative student at first, it really did help the next morning when he had to have an IV re-inserted.

Chet was also given a stress bag full of items he could use to distract himself during the IV. She also gave him markers to decorate the bag with. His favorite part of this bag was the 20 Questions game. He plays with it constantly now when we are in the hotel room.

Beth really did enjoy the class, and both of them thought this really sticky frog was cool.

The frog became a major source of entertainment the rest of the time we were there. That evening, Chet had thrown it too high and it stuck on the ceiling. I am not tall enough to reach it even when I stood on a chair, and it was too sticky to be able to just knock it off the ceiling, so we did the only thing we could and left it there. We laughed and joked about what the housekeepers were going to think when they saw the frog, we kept reminding each other the frog was watching everything we did, and generally had fun with in a goofy, bored sort of way... lol. It took a few days for that frog to finally fall off the ceiling.
On St. Patty's morning Chet went back in for another marrow aspiration, and as you can see, he was a bit reluctant to be there. Actually, what he really doesn't like (other than the IV) is that he cannot eat before the appointment due to the anesthesia.
This is Chet's primary medical specialist, Martha. She is wonderful. I can call her anytime with questions or problems, and she gave me her direct number if we have anymore emergencies so we don't have to try to coordinate information with the residents on call and any local ER docs we are seeing. When Chet goes in for the aspirations, I can stay in the room with him right up until he falls asleep from the anesthesia. It makes it a lot easier to leave that room knowing my baby is in such good hands.

This isn't Chet's doctor, but I absolutely loved that he came to work as a leprechaun. There are so many serious, heart-breaking things happening in St. Jude all the time with the kids there, and it makes it easier for everyone involved when everyone from the kids to the doctors can celebrate anything they can!

After his recovery time, the kids wanted to go on the hunt for the Pot of Gold the hospital was having. We found all five shamrocks with clues to the next station, and at the end we found a pot full of a rainbow of playdough. Chet picked green and gold... lol... because they are the color of money.
Beth went with pink and purple, one for her and one for Faith. She was really cute the whole time we were there, saving something from everyday for one of her siblings when she got home. She had a marker for Kyle, the playdough for Faith, a book for Todd, and a snack for Matt.
Chet spent most of the rest of the afternoon recovering in the game room. He was a little more sore this time than last, but other than that he didn't have any lingering problems from the aspitation.
We had a couple of days to wait for the test results over the weekend and on Saturday we just wanted out of the hotel for a little while. We are huge Food Network nerds, and we found out the Neely's BBQ is literally around the corner from St. Jude. We had to go eat there. Afterwards, we stopped at the grocery store and got some water and snacks, and by then Chet was feeling pretty tired so we headed back.

On Sunday we went in for another urine test to check for blood, and it was completely clear. Woohoo!

On Monday we went back in for counts, and Chet's platelets were still falling. He was down to 15,000 platelets, so an appointment was made to get an ultrasound the next morning and then another appointment to give him another platelet transfusion. On Tuesday when Chet woke up I noticed he wasn't looking so pale, and he was feeling really well. We went in for new counts, and then to the ultrasound to check for any bloodclots in his stomach, wherehe got the "all clear." Then we went over to check in for the platelets, and while we were waiting for them to find a bed for him we went to lunch. In the middle of our lunch, my phone rang. It was Martha calling to tell me they had cancelled the platelet appointment. At first my stomach lurched wondering what had gone wrong, but instead she was calling with great news. Overnight he had jumped up to 49,000 platelets! It was phenomonal! She said after Beth and I had our blood drawn for the HLA typing we could go home. We weren't going to argue with that!

We finished eating, and headed over the TTU clinic to get our blood drawn. They had to enter Beth and I in as patients and give us bands. After having seen this with Chet a few times, Beth put her arm out for the band and then looked up at me and said, "Mommy, why do I have to get a shot?" I hadn't even told her yet what was going to happen so she wouldn't spend a long time being worried. She was sooo brave though! We got in there and she sat down on my lap, put her little arm out there, and even though she was worried she didn't actually cry until the needle actually went in her skin. Chet took this picture, and I thought he did a pretty good job.

Then it was time to take his IV out, and head home. He wanted me to make sure I got a close up of the IV before he would let the nurse take it out. He wants to show it to his friends... lol.

We drove home that night through some serious weather. There were thunderstorms, tornado warnings, and major floods in all of the counties as we headed north. We made it home safe and sound, and waited to see what would happen next. So far, he has done remarkably well. He has't had anymore pancreaitis, he has energy, and best of all his platelet count is up to 64,000. The nature of this disease is that you cannot predict what will happen or when. There are sudden attacks, and then sudden recoveries. Martha said, "The only thing we know for sure is that he is unpredictable." So for now, we are thanking God (power of prayer, Baby!) and celebrating every minute he is feeling and looking good. He started bruising again last week, which worried me, but this time he was bruising because he had actually bumped his arm on something. I guess we can let him do that occasionally... :0)