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.

Give the gift of life... it is literally within you.

Today is a blood drive at my church. Giving blood is free. It saves lives. Please go to a local blood drive or your local blood bank and donate. Be a part of that life-saving gift. And until the 22nd of this month (which happens to be Chet's birthday) the National Marrow Donor Registry is waiving the fees to register to become a registered bone marrow donor. Please don't overthink this. To be a donor is simple. If you are ever called to be a donor, it does not hurt the way you may have been lead to believe it does. You are sore for a day or two. You go home the same day you donate. You spend the rest of your life knowing you made a difference. You can save lives. You can use your marrow to restore health to somebody who has no other alternative. Please, get involved. Click here for more information.

Update:
It looks like you can't follow a link directly to the sponsored page. I called NMDR, and Sherry told me we have to follow a certain path for it to be free because of their security issues to avoid hacking.

First go to www.marrow.org

On the right side of the screen, under the cord blood box is a box that says "Events" Click on the link that says "Nascar Foundation Drive." About 3/4 of the way down that page, you will click on "join online now." Then finish filling in the paperwork and the Promo Code will automatically generate. I know it is a couple of extra clicks, but please don't let that deter you from joining!!

Hi there

There hasn't been much to report on Chet's condition, which is a good thing. He has remained pretty steady and healthy. The only outward symptom of his PNH is all the peticiai all over his legs. I am planning on taking him in for counts on Thursday to see where he is at, and his next appointment at St. Jude is on the 26th. He is due for a marrow aspiration, so I am not sure at this point how long we will be there.

He has been working hard on getting all of his chess pieces made, and will be working on his board next week. This has been an exciting process for him, and I can't wait to see the finished product.

School started again, which has left him a bit tired, but so far he hasn't picked up any bugs or been extremely exhausted. Yay!

His birthday is coming up in a couple of weeks. I have been browsing different chess sites trying to decide what to get him. He wants a chess game that he can play on his laptop as well, and I haven't had a chance to start looking for those.

I will post on Thursday when we know what his counts are now, but thought I would just update you all and let you know that right now he is doing pretty well!

On a side note, I posted the song below from the Hillsong band and I posted the video of the lead singer's cancer story. Sadly, his entire story was a hoax. He lied to his wife, his parents, his church, his fans, and the people he was evangelizing to. At first I was rather angry when I heard about it, but now I am simply sad for him. I cannot fathom why somebody would literally LIVE a lie like this when it is such a nightmare for those who are truly living through these terrible diseases, but I do think he probably needs a sort of healing that medical practitioners cannot provide.

Guess who went camping?

I swallowed back my reservations and let Chet go with Matt, his best friend Tyler, and the other boy scouts on a camping trip this weekend. They are canoeing. I have had terrible images going through my head of that tiny little boat flipping him out. They are hiking, and all I can think of is how tired that will make him. It has been raining. I hope the river is calm. I sent him with his dinner last night, a bag full of his vitamins, and a whole bunch of prayers. I am sure they are having a wonderful time. I know he is thrilled to be earning badges. But I suspect my teeth aren't going to unclench until he gets home safe and sound tomorrow.

53,000 surprise

I took Chet in for counts the other day. He has a lot of patichiai and felt like his counts would be low. His red cells (energy) and white cells (immune) ARE lower than normal, but his platelets were at 53,000. They went up while the others went down. Strange. We were happy to not have to make a vampire trip to the hospital that night, but we have been taking extra precautions to avoid illness. Now I need to get him to eat more foods that will help boost those red cells. Between not feeling like eating and being an extremely picky eater, he hasn't eaten nearly enough lately. I am going to start hiding the nutrients in the food he will eat. I will let you know how that goes! LOL

You might need a tissue for this.

Here is the story behind the song. ETA... this is anAustralian band called Hillsong. :0)

No major updates, just some random thoughts

Chet's next appointment is in September, and I expect we will hear more about when they feel it will be good to go forward with the transplant at that appointment. Chet's immediate plans are to finish his pottery chess board, enjoy the rest of this summer, and get back to school in a few weeks. He has grown again, and is increasingly getting skinnier. I really can't tell if it is just because he is growing, or because his appetite is decreased or both. He is tired all the time too, which can also be attributed to growing and to the disease. I have been making a point to make a lot of his favorite foods so he will eat more. That helps with both the weight and the fatigue.

He has been asking us questions about the transplant. He knows that when he goes through the chemo/radiation treatments he will probably lose his hair. He hates that idea. He isn't particularly vain, but he likes having longer hair. We offered to get him a Dolly Parton wig. He gave us one of his wonderfully smirky looks.

We were talking about how his blood type would change the other day too. He is A+ and will become O+ after the transplant. Jack was teasing him and telling him he might grow curly hair and chocolaty brown eyes like Todd too. Of course, that won't happen, but it really did make me think about the wonders of this Creation business. After the transplant, my understanding is that if you were to compare the DNA in Todd's blood and the DNA in Chet's, it will be the same. How amazing is it that the DNA can change or take over that way, and yet a person still retain all the physical attributes that came in his own DNA. We actually talked about that, and it was mentioned that their kids could end up looking an awful lot alike, and genetically appear to be Todd's. What I didn't mention to Chet, though, is that the last time I really looked into the transplant procedures, one of the side effects of the chemo/radiation is that he will most likely become infertile. And that breaks my heart. The thought of it caught me off-guard and left me quiet for a few minutes. I know there are other options, but that doesn't make it less sad. I really need to ask his doctors about it, though, and get a better and more accurate explanation.

Before we do go for the transplant, there will be lots of things that need to be taken care of. One of the things we will definately be doing is throwing a huge Can't Wait Till You Get Back party for him before we go. We will be inviting everyone he knows. I will let you know more when we know more, and hope all of you who have been on this journey with us can make it.

Connie, he didn't get to go camping. The biting insects were out in full-drive, the bites of which cause infections he has a hard time fighting off, and he was sooooo tired. He did advance in rank in scouts last week, though, and is continuing to earn all the badges he can in the meantime. The good news is that once he is cured he can go back and finish all these things he hasn't been able to do.

In the meantime, Todd has enjoyed his semi-celebrity status. He particularly enjoyed telling Chet between giggles the other night , "If you want my marrow you better give me all your cookies." To which Chet promptly laughed and said,"I'm not giving you my cookies, they will just hold you down to knock you out to give me the marrow." There isn't much that makes the stress of waiting and seeing better than knowing they can laugh about this.

So here is my specific prayer list regarding Chet at the moment:

That he remain stable and not experience anymore close calls or pain.

That he not develop anymore of the serious conditions this progressive disease will eventually cause if he doesn't have a successful BMT.

That Todd remain healthy as well.

That the doctors use discernment and compassion while treating them both, under the guidance of our Heavenly Father who is the Great Physician.

That all of us remain positive and hopeful to better help them both recover quickly.

That ultimately Chet will receive the cure he has been praying for.

That the treatments and results that Chet experiences helps the scientists discover cures and therapies for this and other bone marrow failure diseases.

I haven't written poems in years, but I have had one knocking around in my brain for a couple of weeks. One of my goals this week is to actually get it written down. Maybe I will do that this week. I might post it if I do. No guarantees, though... lol.

This just in

My phone just rang, and it was Martha calling to tell me that it looks like Todd does indeed match Chet. I am beyond words right now. I will post more later when I have a better handle on my emotions. Thank you for all the prayers.

No word

We were hoping we might hear today if the test results were back, but we didn't. We are trying to be patient. Maybe Monday will bring some good news.

Still waiting

We haven't heard anything yet about the test results. Hopefully we will by the end of the week.

Chet is feeling very fatigued this week. He has been sleeping very late, going to bed earlier than normal, and taking naps. I wish I could just infuse him with some of that energy he should have. He wants to go on his BoyScout campout this weekend, and we just don't know if he will be able to.

He did get to start his pottery classes last week. I am so grateful he has something to do that he really enjoys and doesn't wipe him out!

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!

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)

Checking in from St. Jude

It has been a long week, and I haven't been able to post anything because the hospital we were in didn't have internet access.

On Tuesday I took Chet in for counts. I could tell he was looking a bit low, and wanted to make sure it was safe for him to try to earn his swimming merit badges that night. His platelets were at 5,000, and his other lines were down as well. The arrangements were made to take him to get the platelets, and since we thought that was all we would be doing we just got in the car and left thinking we would be home in a few hours. From now on, we are going to have an overnight bag ready to go at a moment's notice.

He was given his platelets, and we were on our way home surprisingly early. He was released at 11:30 pm. We were halfway home when he began to tell me his stomach was hurting, and it was getting worse. Thombrosis (clotting in the stomach and brain) is a problem for PNH patients, so I immediately called the doctor on call at St. Jude who told me to get him to an ER to see a pediatrician. I called his local doctor to see which ER I should go to since we were about the same distance from the one we came from and the one closest to our house. He sent me back to the city, and we got back about 12:30am. My cell phone battery had died, so I couldn't call ahead to the ER to tell them what was happening and that we were on the way back. (The next purchase I need to make is a car-charger)

The rest of that night was spent in the ER. Chet had had a pancreatic attack, which was causing the severe pain. He had bright red blood in his urine (which is another problem from the PNH... it means he was experiencing an increase in the breakdown of his red cells. There is a medical term for it I cannot think of right now.) He was given morphine, and he was finally able to sleep, and hooked back up to an IV. I have no complaints about the doctors and nurses there, and this isn't meant as a complaint, but since this is such a rare disease we spent quite a bit of time that night sharing what we did know about this disease with the doctors there.

At 6 am he was admitted to the hospital and put in a room. Jack had already gone home to make sure the kids were ready for school, and Chet and I went to sleep for a couple of hours. By the time we woke up he was no longer in pain, and the blood in his urine was dark brown instead of bright red. The doctos at St, Jude asked the doctors there to have an ultrasound done to check for clotting, and that showed everything was normal. (I told him that the good news is that he isn't pregnant.... he giggled at that.) By the end of the day he was eating again and his urine was clear. We thought we were on a fast track home. Then the doctors said they wanted to see what his counts were in the morning to make sure his liver and pancreas were completely normal.

So the next morning the counts were taken and his platelets were falling extremely rapidly. His other bloodlines were falling too. His red cells and white cells were very low, and the doctor said if he didn't know he had PNH he would think he had developed severe aplastic anemia again. He called the doctors down at St. Jude again to see if he should go ahead and give him more platelets, or possibly whole blood, and his doctors decided they wanted him down here for evaluation. (His doctors and nurses were rather fascinated by him there... they don't treat very many patients with such rare diseases, and he looks so perfectly healthy as well as being such a calm patient that I think he really won some of them over.)

An ambulance was ordered, and within an hour we were on the way. I tried to follow the ambulance, but once we hit the freeways I never saw them again. We had made arrangements to meet Jack in Conway, and he brought Beth and some changes of clothing to me there. Again we got on the freeway, and finished heading into Memphis, and again I never saw the ambulance again. I got pulled over just outside of WestMemphis, but when I let him know why I was driving so fast the officer let me go. He even told me that he had seen the ambulance and I wasn't too far behind.

After arriving, I found Chet in the treatment room, and his doctor came and did an evaluation. Then they taught me how to flush his IV line. I have never wanted to be a medical practitioner of any sort, but I have been receiving a lot of new medical knowledge this last month. After another set of counts showed he wasn't in any immediate trouble, we were sent to the family hotel to sleep. Oh heaven...real beds.

Today we went in for the first set of testing, and his counts are still falling. His platelets fell another 3,000 in just the few hours between being discharged last night and the early am appt today. I don't know yet what the PNH test level results were.

Chet has had some terrible IV experiences the last couple of weeks, so a ChildLife specialist came in and talked to him about it for a while. She brought an IV doll and went over the entire procedure with him, explaining every step. Then she taught him how to try to relax and be calm through the process, and gave him a "coping bag" for his next IV stick. It is full of stress balls, a 20 Questions game, and a pinwheel to focus breathing with. I think she did a great job, and he seems to feel better about the idea of having to have IVs. Beth took the little IV class with him. I have some pictures I will upload later when I can get them loaded.

We are going to be here until at least Tuesday. There are several more tests being planned, and the results of those will determine what happens next.There has been talk a couple of times about the possibility of seeing if it is time to have the marrow transplant. Chet feels fine, though, and looks good, so that makes all of this lot easier to handle. Jack and the kids wanted to come down last night for the weekend, but there have been a lot of thunderstorms with tornado warnings there and here. If we are still here next weekend they will try to come down, but we are hoping to be home by then.

Tomorrow is a free day as far as testing goes, but I think we are going to stick close by. He is still getting fatigued extremely quickly and his immune system is down, so there is no reason to take any risks that can cause him more problems. My phone should be working tomorrow since we won't be in the actual hospital building, so feel free to call if you need to. I will post when I hear more.

Thank you to everyone who comes together to help out in so many ways when these crisis times come. We are so grateful for all of you.

New counts

Platelets only last about a week, so we took Chet back in for counts today. His platelets are back at 22,000, which is very low for most of the population but is much much much better than 3,000. His doctor at St. Jude thinks he might have been hit by a virus that attacked his system. His immune system is still lower than it should be, but she thinks he is okay to go ahead and go back to school tomorrow.

Unfortunately, his medical issues have caused him to exceed the allowed amount of abscences. I have to go tomorrow to take care of more paperwork as far as that is concerned, and see what can be done to try to keep him on track as much as possible in school. He is so happy about going back to school. Let's hope he stays on a healthier track and doesn't have to miss anymore for the rest of this semester.

I think I have the major points covered in updating this blog. Now I should be able to just come and post updates as things happen. We are going back in for new counts next Wednesday, and will be watching this week for anymore unwelcome symptoms. Chet wants to be able to go earn his swimming badge in Boy Scouts next week, so hopefully this upward trend continues to let him do that. One of the badges requires swimming 300 meters, and he is worried he will get too tired before he can complete it. So if you are praying for him this week, will you please add in a little request for an extra boost of stamina and endurance to let him complete this task? I know it would mean an awful lot to him.

February 28, 2008

Chet had been having increased amounts of petichaei and bleeding the week after we got home, so I called his doctor and she sent him in for counts. His platelets were at 3,000, and the lab made a panic call to his local doctor's office. He began making arrangements to get him a platelet transfusion, but he had to not only find a hospital that had the necessary platelets, but also one that had an available bed. As the day went on Chet progressively got worse. He became extremely jaundiced, extremely tired, and lacked an appetite of any kind. I finally got him to eat a frosty on the way the hospital. I figured ice cream nutrients had to be better than nothing at all. It was after midnight before he was finally in the hospital, with an IV inserted, and the platelets began to be transfused. He was given one unit of platelets, and they made an immediate difference. If you are a blood donor, thank you. From the bottom of my heart.... thank you. Chet, and patients like him, are the ones they are talking about when they tell you that one pint of blood saves three lives. In all the years he has been sick, his counts have never been this low or this critical.We came very close to losing Chet that night. I truly believe that the prayers that were being said for him kept him going until the platelets were in place. We are so grateful for our family. We are so grateful for a church family that has provided support and help in so many ways since this began. We are so grateful for a community that cares so much. We are so grateful to the heroes who donate blood and marrow to save the lives of strangers. And we are so thankful that Chet is still here, and doing much better.

February 13, 2008

We went back a week and a half later for the testing. We knew we would be there for 3 days this time while we waited for the test results.

The worst part of the morning was Chet getting his IV. His internal port was removed when he was four, and he doesn't remember the big pokes, and for the first time through any of this he really cried. He had an allergic reaction to the tape, and he is so sensitive to pain that he never got used to the IV being there. For him, the best part of the day was getting it taken out. Along with the blood tests, he was admitted to the surgical outpatient to have a bone marrow aspiration and bone biopsy. I was able to stay with him until the anaesthetic put him to sleep. The very first thing he said when he woke up was, "Can you take this IV out now?"

Because a bone marrow aspiration makes your hip sore, he rode in a wheelchair out of the hospital. Target was throwing a big Valentine's Party for all the kids and Chet wanted to go see what they were doing, so we stopped there on the way across the parking lot back to the hotel. He stayed in the chair for the most part, but when Beth asked him to take a picture with her he stood up, put on the silly red hat, and smiled for the camera. I thought that was really sweet of him. We didn't stay very long because the pain killers were wearing off and he wanted to be back in the room.

The doctors called us and asked us to come back to the clinic that afternoon. The preliminary results were back, and they found that Chet had developed PNH. He is no longer considered an aplastic anemia patient, and unfortunately the PNH is even rarer and more difficult to cure than the aplastic anemia. Worse, it has more life-threatening manifestations (blood-clots), and because it is so rare there isn't a lot of research on this disease. The biggest paper ever written on it is only 6 pages long. The worst thing about diagnosing a new disease is that the doctors have to tell you every worst possible scenario. I was given a lot of frightening information that afternoon, but the thing the doctors emphasized over and over is that although there are some scary aspects of this disease, Chet's case will be handled according to how it develops in him. At this point 20 percent of his cells are affected by the PNH, and although he has begun to develop jaundice which is typical in PNH patients, it doesn't show up physically in his skintone or eyes yet. On Friday, we went back and they confirmed that he doesn't have any cancers right now. At this point they plan on having bone marrow aspirations at least every six months, check-ups in the clinic at least every three months, monthly counts here locally, and ultra-observance to watch for blood in his urine, headaches or stomachaches that can indicate blood-clotting, and increased bleeding and petichaei.

We didn't have any appointments on the 14th while we waited for the rest of the results, so we went to Graceland. (Chet and Matt are both huge Elvis fans.) Graceland gives free admission to St. Jude patients and their families, and they are only ten miles from the hospital, so it seemed like an ideal way to spend the day. Chet, Beth and I had a lot of fun there, and it was a nice way to take our minds off the stress of the trip to Memphis. Chet wants to go back again sometime, and he wants to go see Sun Studio where Elvis recorded his first albums. I am so glad there are interesting things we can go do during the stays down there. It makes it easier to deal with the medical issues.

Here are some photos from Graceland.

February 1, 1008

Chet's first appointment at St. Jude was on the first of February. When we arrived on the evening of the 31st, we had to go to the hospital to check in. Chet was running a slight fever, and not feeling very well. After they checked him out, we got settled in the hotel.

The next morning we met Chet's doctors, and they did their initial examination and reviewed his case history with us. After counts, we found out that his platelets had dropped to 22,000, which was the lowest they had been in over 8 years. When the doctor told us that, our hearts just stopped a bit. His immune system was really low, so the doctor told us to keep him home from school until his next appointment to give it a chance to recover. Then they told us that they wanted to bring him back the following week to have a bone marrow biopsy (which we expected) but they also wanted to run some tests to see if he had developed another disease. They told us that they wanted to check for leukemia, MSD, and Fanconi Anemia. We knew it probably wasn't the Fanconi since he had previously been tested for that, and we knew there was a chance that aplastic patients can develop MSD, and we knew there was a chance for leukemia, but it is still a terrifying feeling when doctors run off a list of tests for diseases that they want to exclude.

Here are some pictures from that first trip.

Chet and the St. Jude statue. I hate that he has to start a new treatment regime, but I am so grateful, beyond words, that he can go to St. Jude for treatment. They are every wonderful thing you have ever heard about them.

Here he is playing a puzzle game at the Cracker Barrel. We stopped there to eat on the way to enjoy some time together and to let him play with the checkers they have there. You can tell by the look on his face that he wasn't feeling great, but that didn't stop him from trying to beat that game over and over!

He and I decided to play with taking some pictures together in the hotel room. Chet loves the hotel rooms. He loves sleeping in the beds, being able to play in the arcade they have for the kids, and he adores having an unlimited supply of Mountain Dew.

I took a shot of the Welcome to Tennessee sign. It hangs right over the bridge that crosses the Mississippi River, and he really enjoyed seeing the river itself. The next time we go down he wants to go ride the steamboat on the Mississippi.

Recent History

I find it very difficult sometimes to update all of you about what is happening with Chet. Everything seemed to happen so quickly in February... the new diagnosis, coping with the new treatments and prognosis factors, new doctors, new worries, new fears: it is really overwhelming at times. I thought I would start this blog about what is happening with Chet to serve a multi-fold purpose. It lets us keep a record of what is happening that Chet can follow along with now, and in the future look back and see how far he has come. It lets us keep our friends and family updated with the most current info even when we haven't been able to make all the phone calls or update everyone. (It might also help avoid having inaccurate information inadvertantly being passed around.) And it gives anybody who wants to a chance to leave comments or messages for Chet to read.

Chet was diagnosed with severe aplastic anemia at 2.5 years old. It was devastating, but as time went on we learned to deal with things as we needed to. We knew the limits and guidelines - not enough platelets? no rough housing and avoid bruising - not enough red cells? boost the iron intake, eat extra veggies, and rest - not enough white cells? avoid crowds, wash your hands even more often than normal, take airborne. We got used to living with aplastic anemia, and although he wasn't really cured (his platelet counts never did return to normal) we found that we could all find a way to live with this disease until he was either cured or had a remission.

In June of last year, we took him back in for yearly counts, and realized that he had lost over half of the platelets he had maintained for several years. The doctors here began to watch his counts more regularly, and within a few months it became apparent that his counts were rising and falling in an irregular pattern. He still hadn't become so low that he needed transfusions, but it was obvious that something serious was happening again. In December he was referred to St. Jude Children's Research Hospital. When we got the phone call that all of the arrangements had finally been made and his appointment was set, the reality really began to sink in deeply. Once again our little guy was really sick, but we had no idea what was ahead.