Things are coming together

We left a day early and drove to Pennsylvania. We stopped by Steamtown, a train museum in Scranton. They had one of the original Big Boy Steam trains. We saw a real roundhouse, a turntable, and Aaron went on his first real train ride. The kids were in heaven.

Then on to Cincinnati. After getting only four hours of sleep each night, I broke down in tears. Finally, someone listened to me. I explained that I cannot function anymore. I cannot take care of Aaron or myself when I am exhausted. The pain team was put in charge of the situation. They first want to focus on Aaron's pain and make him more comfortable. They also are adding melatonin to help with sleep. So far his sleeping hasn't gotten better, but there is a Plan B if needed. I have also gotten permission to cut off his food/drink intake in the middle of the night. This will be a hard, but very much needed change.

Aaron's GVHD continues to be amazing. His skin is softer than ever and we should be able to wean even further in a few weeks. He made it to a level where his body can start healing. His kidney function was better this time. I was sad to find out that the discoloration on his face won't ever go away and he will be reminded of his transplant every time he looks in the mirror. I pray that he does not have a hard time because of it.

Posted using BlogPress from my iPhone

Daddy's coming home!

What an absolutely horrible month! I really hate to be negative, but there is no way to sugar coat the events of these past few weeks.

Aaron's tantrums have gone from bad to worse. During one of his tantrums he was yanking on my chair so hard that he fell backwards and fractured his L2 vertebra. After that he could barely walk and his tantrums have escalated. We believe his behavior could be due to pain. Aaron does not usually behave badly. Something has to be wrong.

He wakes me up about four times each night for up to an hour each time. I am getting 3-4 hours of sleep. I was getting 5-6 hours a night which wasn't enough and now I am severely sleep deprived. I am not functioning well and have daydreams about sleeping in the garage in my car so no one can find me to wake me up. He is hungry, thirsty, and needs to use the bathroom. I wish I could ignore him, but the doctors say I need to accommodate his needs.

Michael has been stuck in Trinidad. His passport expired this month. He has been trying to renew it for over a month. Part of the government went on strike and passport production has been halted. He had to go there before his passport expired or else he would not be able to travel there to get the passport. Being a pilot, he cannot work without a passport.

We got a text from Mike just now that he is on a flight to Orlando. Thank goodness! We are all excited to see him. He was gone for his birthday and Father's Day. We look forward to a few celebrations and I look forward to sleep.

Here is Serena's reaction to her daddy coming home:




- Posted using BlogPress from my iPhone

Aaron's first major ouchie (sort of)

We arrived in Cincinnati a day early to do a DEXA bone scan. Results came back with a Z-score of -4.5. That is pretty darn awful. On the bright side, he can recover quite a bit as long as we can get him off these steroids.

Wednesday morning we went for his treatment. I got him out of the car, he tripped over my foot and boom. He fell on his knees and hands and got his first nasty scrape of his life. He has had many ouchies caused by poking, chemo, and gvhd. However, this was his first normal ouchie. He did a pretty good job scraping a good amount of skin right off his knee. He was pretty tough about it and enjoyed watching the nurses clean it up.




The rest of Aaron's body is falling apart. Eyes are getting worse; liver and kidneys are pretty much lousy; and his blood pressures would send a normal person straight to the ER to avoid a stroke. I am praying that he can get off these steroids. Thanks to some awesome moms that I have never met, I am hopeful that Aaron can still recover. A network of people on Facebook has given me immense support. Their children have been down the same road and are doing relatively well now.

As I have been preparing Aaron's homeschooling lessons for next year, I have felt overwhelming joy. God has been good to us! Sometimes it is hard to see, but lately I am seeing it. Aside from the fact that Aaron's illness just plain sucks, we have been given so many other positives. I have gotten to spend so much time with Aaron that I never would have otherwise. For the upcoming school year, I have come up with some super fun Bible studies, science projects, and other activities. I have done extensive research and found the best reading and math curriculums for Aaron that far exceed what the Common Core could ever teach him. I am looking forward to joining a homeschooling group as soon as his immune system improves that will give Aaron some fantastic peers to build friendships.

Please send some prayer or light or whatever you believe in our way. Aaron has got to get better soon!!!



Posted using BlogPress from my iPhone

Location:Crescent Ave,Covington,United States

Apple pie diet

Aaron was admitted for a week to the hospital in Cincinnati. His tummy had gotten HUGE! His intestines were very inflamed and putting pressure on his organs. He could not drink a full glass of water without throwing up afterwards.

The only treatment for this was to have nothing by mouth to eat or drink for at least two days. The first day was a nightmare. First he was asking nicely and then begging. By the end of the day he was screaming and hitting me (something he never does).

The next morning, when Dr Davies came in, he was begging for pie. She said "let him have pie!" The only thing he ate for the next two days was apple pie filling. He was a new kid. He began laughing and played all day. He told jokes and made pretend pies with the nurse. He showed the doctor his tummy. He did not scream at anyone. This was unusual behavior and absolutely amazing!

By the time we got home, his tummy had gone down two inches. He still has a long way to go but he seems more comfortable. As we go down on steroids, he should get even better.






Aaron is still holding strong with improved gvhd. We will finally try to decrease the steroids again next week. This will be a major accomplishment.

Aaron's behavior is still not great. He has not been a very happy kid much of the time. I pray that this improves. I look forward to this summer. Serena will be here and the kids can play together.

- Posted using BlogPress from my iPhone

April Showers

With all the "gloomy rainy" days we have had in April, May is sure to be full of the most beautiful "flowers."

Aaron's tummy is bigger than ever. He has thrown up several times lately after drinking. We believe this is because the pressure on his stomach from his enlarged intestines.

His mood has brought me to tears. For two weeks, his only method of communication is a tantrum. Asking him if he wants juice or water results in a total meltdown. When the nanny is here, he just stares out of the window all day.

Thankfully, his mood has improved this past week. I have been working hard with him. Timeouts, ignoring him, and lots of hugs. Being a parent really is tough work.

On a bright note, Aaron's schooling is going well. Our lessons are a bit inconsistent. We fit lessons in when we can. Aaron is starting to read simple words. He looks forward to earning his stars and getting rewards. Right now he always chooses to go to the pie shop.










Michael and I have decided to admit Aaron to the hospital and try gut rest. He will not be allowed to eat or drink for 48 hours. He will be on IV nutrition. Our doctor doesn't want to do this. She doesn't feel the results are very good and not worth starving a child. We feel that we have to try. Aaron's mobility and mood are being affected too much.

I would love any advice on how to entertain and soothe a child who is not allowed to eat for two days. I am dreading this, but praying it works. I am not strong when I see Aaron suffering.

I will end with some super, fantastic, over the top news. Aaron's skin is better than ever. It feels soft!!!! It doesn't look great, but I think his gvhd is starting to calm down.


Posted using BlogPress from my iPhone

Looking good, feeling hopeful

Aaron's steroid was decreased over a month ago. He hasn't been able to stay at this dose before without flaring up. Over the past two weeks Aaron's skin has been getting better and better, his diarrhea has gotten better, and he has lost three pounds (a good thing).

I hope this is the turn for the better we have been waiting for. I am cautious with my optimism since things can change quickly.

I have been working hard to get Aaron's classroom and curriculum ready for next year. He turns five in October. Technically he would fall into pre-K, but I plan to begin him with kindergarten.

Michael and I came to the realization that he won't be going to school anytime soon. The earliest he would have a decent immune system would be another year. Even then, he will not be able to have vaccines for awhile. This trend of not vaccinating children and letting them into school systems is horrifying. We have come so far with medicine to eradicate diseases and now they are popping up again. Also, Serena is a healthy ten year old and is still sick almost once a month during the school year.

I do not plan on having a life of isolation for Aaron, but unfortunately we will have to be careful for awhile. I hope to put Aaron in group activities that I can monitor more easily for sick children. Maybe art classes, cooking classes, karate, etc. I would love some other ideas anyone might have.





Posted using BlogPress from my iPhone

Death of the sucker fish

We made another trip to Cincinnati. The drive was one of the easiest so far and NO SNOW!!! The weather is still cold but the sun is shining.

The first thing Aaron does when we arrive at the Ronald McDonald House is go to the fish tank and look for the sucker fish. We looked and looked and could not find it. Sometimes he hides behind the seaweed, but we asked Barbara anyway. Barbara said the sucker fish went to heaven. Every time we went by the fish tank Aaron would ask if the sucker fish came back yet. I tried explaining that the fish died, but I don't think Aaron understood. Barbara gave us a book to help.


This is the book given to families who lose a child while staying at RMH.

Our visit went well at the hospital. Aaron's electrolytes are better, but not normal. His liver numbers have increased to horrible levels. We will hold his antifungal medicine to see if that helps. His skin has improved with his photophoresis treatment. We are hoping he can stay stable and that we do not have to increase the steroid again.

Posted using BlogPress from my iPhone