The brain scan

Chet has been having frequent headaches. We mentioned this to his doctor at his last count check a few weeks ago. (I didn't have a chance to post about that one yet.) She was worried that he might be developing some blood clots in his brain, which is a progressive complication of the PNH. She scheduled him to come back for an MRI, so we headed back down there on Sunday.

We had to be there at 6:45 in the morning on Monday. On the drive down, Chet was asking me about what happens during a brainscan. I teased him and told him that they were going to use it to prove he really does have a big head. The laughter broke the tension, and I did my best to assure him that this was a painless procedure. Then we watched House that night in the hotel, and wouldn't you know it, but the patient needed an MRI. So Chet asked if that was the machine he would need to go in, and I said, "Yes, but whatever freaky thing that happens next on this show while the kid is in there is NOT going to happen to you."

He did have to wear the same lovely gown as the actor on the TV.

While the tech was prepping the movie for him, Chet looked around at the big machine a bit.


Then he had to lie down and get as comfy as possible.


The last thing the tech did was get him strapped down. For Chet, this was the worst part. He is nowhere near being hyper or fidgety, but he didn't like being buckled in and having his head locked in place.

He finally went in the tube, and then I had to leave the area. He was given a blue dye, and the scan took almost an hour. I told him he could tell people that he has a smurfy brain now.

We still don't have the results back, but I am assuming that if the tech had seen anything major she would have alerted the doctor and we would have been called back in to start treatments. We just had to wait for his counts to come back before we could go home. Chet spent the waiting time looking up algorithms for solving the bigger rubik cube puzzles.


His platelets are hovering around 36,000 again, which has become his new normal. His immune system is very low again. 500 would be critical, and he is down to 700. Hopefully that will boost back up again and not get compromised by any of the bugs this flu season brings. (He did get both flu shots at the last appointment I didn't get to post about.)

We go back down in three months for another marrow aspiration and counts. Now that he is 13 he gets to go in the teen rooms, which makes putting up with being poked and biopsied a lot easier! They have his choice of Wii or Xbox360, and he loves having the games all to himself to play.

Our latest trip

This month was Chet's regularly scheduled marrow aspiration. His doctor called and asked us to come a day early so there would be time to do the necessary tests and make sure everything was good.

Chet is still stable, but he has lost a third of his platelets again. That has really become par for the course for him.

As you can see, Chet has some strong feelings about getting IV's put in. He really doesn't want to do it.

I think he almost considers it torture to see the nurse line up all the necessary gear and equipment to get one in.

Beth always thinks it is funny, though. She looks so small next to Chet.


Here he is right after he was all hooked up and right before the medicine knocked him out. I took the girls to lunch, and when we got back he was awake in recovery and eating Rice Krispy treats that he washed down with all the Mountain Dew he wanted.

There is a new drug program that he will be a part of in the next couple of months when the protocol is approved. It won't affect his bone marrow failure, but it should stop the cells he does make from being destroyed. It will mean a weekly trip down there, and it is administered through an IV. We should know within the next month or so when he will begin the program.

On the way home the next day I took Chet and the girls to Cracker Barrel for lunch. Faith was busy trying to figure out the brain teaser puzzle they have on the tables,

while Beth was busy making up her own rules for it.

Then I loaded my two blue-eyed children and their little sister back up and we finished driving home. School starts again in a couple of weeks. Hopefully Chet's immune system will stay strong and we won't have any cases of the flu (esp that nasty swine flu) in our home this winter. Jack is working hard to find a day job that gets him away from the crowds he works with now so he isn't bringing home as much crud, and Chet will have to remember to step up his handwashing. He needs all his blood cells to give him the energy required to make faces like this.

Viral Problems

There has been a stomach virus wreaking havoc on our family, and I had hoped that it was gone without getting Chet. Unfortunately, he did get it and started throwing up Monday. He stayed home Tuesday as we handled it with as many fluids as he could keep down and rest. After dinner Chet had fallen asleep on the couch and woke up at 9:20 to use the bathroom. He passed out in the hallway, and when I helped him to the couch I realized he was burning up with a fever. In all these years, he has never passed out and never run a high fever. As I threw together an overnight bag for both of us, I called his doctor to see which hospital she wanted us to go to. She told me to not spend the time going to Fayateville. She wanted me to take him to our local hospital to make sure he didn't have a septic infection. I was scared to death.

After a couple of hours in the hospital, the test results showed that he was barely above the critical levels with his immune system,but not septic. Since he did still have some immunity he would be better fighting off the viral infection at home than in a hospital full of sick people.(This is a small hospital without a pediatric oncology department.) He was given an antibiotic shot after they took two bacterial cultures, the results of which should be back tonight.

ByWednesday evening he was feeling better and finally keeping food down again. He went back to school Thursday because they are prepping for the benchmark tests. He is still feeling tired and worn out, but he is on the road to being well again.

Quarterly Check-up

It was time to return to St. Jude this week for a marrow biopsy and check up. Chet is now as tall as I am, and he is thrilled to have official documentation of that fact.

We didn't take many pictures this time. We were all just tired after the week before and the long drive down. We were so happy to be there, though, with hot water in the showers and electricity!

On Thursday Chet has biopsy and marrow aspiration. He wants me to bring the camcorder next time because sometimes he says some funny things when the medicine kicks in.
They always get him hooked up to all his heart monitors, his IV bag, and his ET finger first.

Then Martha gets him turned to his side so he is ready. Sometimes he stays there as the medicine takes effect.
Then the anesthesiologist gives him one medicine to prevent having the sleep meds from burning. After that goes through, she adds the sleep meds, and it doesn't take long to kick in.
Here is Chet getting glassy-eyed.
He usually just drifts off at this point, but this time he rallied a bit to say "I can see the world." I love when he does stuff like that.
Once he is out they put on an oxygen mask, but this time he wasn't quite under completely and he raised his hand to knock the mask off.
But that was as far as his rebellion ran. His hand fell to his chest, and he was off seeing the world in lala land. I just want to point out how big his hands are. He wears a size 11.5 shoe. He is like a puppy who is growing into some really big paws.
After he is out, Beth and I have to leave. I can't stand just standing outside the door, though. At this point Beth and I usually go get a drink and grab her a snack bag.
When we get back, I watch him through the recovery room door until he wakes up. Then they open the doors and let us back with him.
He is getting used to these and doesn't notice much soreness anymore. After his biopsy, we came back to the hotel where the Grizzlies basketball team was there to meet the kids.
I was shocked that Beth was willing to talk to the mascot.
Then we headed back to our room where we spent the rest of the night watching TV. The next morning we went back for the follow-up appointment, but not all of the results are back yet. His platelets have fallen about 20,000 in the last month, though. Right now they are at 38,000. If they drop to 30,000 he won't be able to fly to Vegas next month. I am hoping they are just low because the week before was rough. Hopefully they get back up a bit quickly.
We will go back again in 3 months as long as nothing else happens between now and then. Even though we don't have the results back yet, his doctors think he still staying stable. Honestly, if he didn't have a couple of life-threatening diseases he would be one of the healthiest kids I know!

Aplastic Anemia Week

Hi everyone! December 1-7 is Aplastic Anemia Awareness Week. After a terribly rocky beginning of the year, Chet has had a stable summer but his counts are falling again. I think it might be because he caught a cold, which is so bad for AA patients, so hopefully they will come up again in the next couple of weeks. Other AA patients aren't as fortunate as he is to have fairly good health. Here is a link to purchase the Bravery bracelets to help provide funding to cure AA, PNH, and MDS. You don't have to know what the initials all stand for to know just how terrible these diseases are. We have to find effective cures that don't risk their lives as much as marrow transplants do. We have to find effective cures that don't leave them on medications that leave them bankrupt, or will cause them to max out within four years any health insurance policy they may be able to get. When the best cure is found, I am positive it will help cure other diseases too. It's only $10 for 10 bracelets. Give them to a friend. Spread the word. Let's save some lives.

Get your bracelets here!

PS... I would love it if you would send me pictures of you and anybody you know wearing the bracelet. I will create a special section for them on Chet's blog.

Low Counts

I took Chet in for counts today. We all have had a nasty cough, and I wanted to see what was happening inside. His platelets are at 33,000, so they have dropped, and his white and red cells are down pretty close to borderline. This isn't a surprise, though, simply because it is a normal reaction when he catches a bug. We are going to keep an eye on him for any other symptoms, keep him on some meds and vitamins, and go forward with our Thanksgiving plans unless something comes up.

He went with Faith and I to see Twilight tonight, and we enjoyed the evening out despite all of us feeling so blah. He didn't want his picture taken there, though.... he knew too many of the girls that were there and didn't want to be embarrassed with a mamarazzi. I wish he didn't feel that way, but I accept it since it is a normal way to feel at the age of 12. I guess it means he won't want me going along to take pictures when he gets to go on a first date, either.

Report from the 26th

I haven't had a chance to update from our last visit, so thank you for being patient!

We stopped at the library on the way and checked out some books on CD. We have a rule that the kids can't watch movies based on books if they haven't read the books. Chet and Faith want to see Twilight when it comes out, and have been trying to get the book read. I don't care if they listen to the book on CD instead, so Chet checked out the whole series, and we listened to it during the roadtrip. Chet enjoyed it so much that I think it will become a regular tradition for our St. Jude roadtrips.

We checked in on Friday morning, and went through the regular routine of blood draws, measurements, and making sure his head wasn't too big.
It wasn't, but Chet has grown two inches over the last couple of months. He has also been looking and feeling fantastic. We didn't have anything major to report, andsince he has been doing so well I wasn't surprised to hear that they don't want to plan a transplant yet.

Chet was expecting them too, though, and I should have clarified with him better that as long as he stays pretty stable they will continue to postpone it as long as feasible. When he heard this he went from his chipper happy self to tears. He wants so badly to be cured. He wants to play sports, he wants to feel normal all the time, and he wants it now. We all felt so bad for him, and he wasn't even willing to joke around to lighten the mood a bit. I felt so terrible for him.

THe nurses and doctors made him a big card and brought him some balloons and a t-shirt, and wanted to sing "Happy Birthday" to him. (His birthday was the 22nd.) He was still teary, though, and didn't want anything to do with it. About an hour later he had calmed down and was happy again. I didn't take pictures of the little impromptu party since he was still crying, and so he offered to ask them to recreate the scene in January when we go back. We both laughed over that.

Then he put on the shirt and asked me to take his picture in it. I thought that was sweet of him.

Beth's birthday was the 26th while we were there, so she laid claim to his balloons.

We spent some time in the Memorial Garden where Danny Thomas and his wife are interred. It was quiet, and calm, and peaceful.
On the way home we stopped at a spot that shows the beginning of the valleys in the Ozarks. We live about an hour into this picture. It wasn't a good time of day for lighting for photos, but the scenery is breathtakingly beautiful, and every time we drive home from the hospital I thank God again for bringing us to these gorgeous mountains.
The goal is to keep Chet as healthy as possible for as long as possible. I understand it frustrates him to be too sick to play sports or have the energy for so many things he wants to do, but not sick enough to be cured yet, but I am grateful that he has doctors we can trust, and he has the chance of a cure when so many don't, and that although he is living with this terrible disease he isn't usually in pain. We go back in January for another marrow aspiration and checkup, and we will continue with monthly counts here at home.

I can't bring myself to pray that he gets cured very soon, because that would mean he would have to get very very sick first. I can't bring myself to pray that he continues to stay sick the way he is, because that doesn't feel right either. So I am going to pray for patience, and turn this over to God who already knows what will happen next.