Still resting

James is doing ok. He is still pretty sick, he just kinda lays in bed and watches movies. Sometimes he will get up and play with toys but gets worn out pretty quick. The doctors are really surprised how well he is recovering. They thought it would take him longer and he would have been worse. Hopefully his counts will come up in the next couple days. He is still getting blood products about every day. He's just pretty much resting and recovering. He will remain in the hospital till his counts are up. He loves to just cuddle with his momma and he misses Zoey terribly. He asks for her every day. We are all still getting used to the new hospital. We definitely miss all our friends at Cardon's.

Day 9

James' mouth sores are in full swing. So they have put up this pump with pain medicine in it to go in a little bit a day long. They just want to keep his pain under control. He was given platelets this morning, most of his counts are low. He isn't eating at all so they have him on TPN and Lipids which is IV nutrition. It goes through his liver so we aren't too excited about that. The possibility of him getting VOD again is pretty high. He has chemical burn on his groin area and kind of on his back. It doesn't seem to bother him too much as long as we keep cream on it. He still plays with all his toys and is smiling and having fun. It's officially RSV season so as of tomorrow Zoey is no longer allowed in. It really stinks because he loves to play with his sister. She won't be allowed back in till he is pretty much finished with everything. Other than that he had a great Christmas and is just recovering. We hope he will get to go home for a week before cycle 2 starts.

Transplant Day

Well the day started off rocky, about 3:30am James woke up crying and then threw up all over his bed. After I got him cleaned up he started to shiver and shake like he was having a seizure. I called the nurse in and she took his vitals and turns out James had a fever of 104. For James anything is a fever over 100.4 so this was a pretty big fever. Usually when he gets a high fever his whole body starts to shake. His feet were also freezing cold which isn't a good sign. So they took some blood cultures and called a doctor to come check him out. They gave him some Tylenol and two different antibiotics. The doctor came and looked at him and said his feet are cold probably because he isn't hydrated enough, so they hurried a bag in and got it going quick. The blood cultures came back perfectly normal so they think he got a fever cause he was dehydrated. We finally got to go back to bed at 6. James was pretty sleepy the rest of the day. At 10 they came in to get everything ready for his transplant. They had to get it all in, in 15 minutes or less. They said usually kids get really sick when they do this but James was a rock star and it didn't even phase him. We sat and played games while they pushed the blood in. They did the whole bag in ten minutes. He stinks like sour milk, they said its from what they freeze the stem cells in. He will stink for a couple days. Other than that he is doing well. He looks really good and loves to play and be silly. He still asks to go home which breaks my heart every time but we just tell him they are making him all better. Hopefully he will have a good Christmas and not be too sick.

Rest days

Well the side effects have started to hit. Yesterday he was ok with just a little nausea but today it's worse. Poor boy feels terrible. He's thrown up a couple times today. He just wants to sit and cuddle with his momma. He's been playing with his toys still but he doesn't play as long, he just doesn't have the energy. When Zoey comes by to visit though it brightens his whole day, he loves her so much. He is asking to walk now(with help) around the room. His legs are getting so strong, they want to put a brace on the right one to help him walk a little better. Tomorrow is the "big day" as all the nurses say. He will get his stem cell transplant tomorrow morning. They have to give it to him in 15 minutes or less. I guess the stuff they freeze it in stinks so James will smell for a little while. Usually between day 5-10 after chemo is when his counts drop and all the mouth sores appear. We are hoping it won't be too bad for him this time. The nurses are ready for it though, they have pain meds ready for him when he needs it.

Chemo day 2

Today James had his second and final day of chemo. He's been doing ok, nausea has started to hit him but he has only thrown up once. He hates the baths and cries every time. He is having fun playing with all the toys though. He is a little restless and bored. No other side effects really yet, they said they will come here in the next few days. Tomorrow and Sunday are his "rest" days and then Monday he gets his transplant. We have to watch what words we say around him like home and store. Everyone keeps saying everything is going to be ok. I hope so we are definitely a little scared this time around. We hope that everything will go well and this will be his last 3 cycles of chemo ever!

Chemo day 1

Well James was admitted yesterday, he wasn't very happy about it. We got to his room and his face just lit up. They put Thomas the Train stickers all over the room and put tons of toys and books in his room. He gets to take it all home. We sat and played with most of the toys yesterday. They just gave him IV fluids yesterday and I had a lot of paperwork to do. About 5pm he decided he was done playing and was ready to go home. Poor boy has no idea how long he's going to be here for.

Today is chemo day 1. This morning they put in a foley and James didn't even flinch. He got more upset when they made him put a mask on when they changed his broviac caps. The foley is to keep track of his kidney function while he's doing this and I think they test it to see what dose of chemo med to give tomorrow. He starts chemo at 10 and will have it go for 7 hours. They changed his protocol and so he will only have two days of chemo. He will have to take a bath every 6 hours because one of the meds they give, you sweat it out. If they leave it on him it will burn his skin like a sunburn so that's why they do a really good scrub down every 6 hours. He can't have any tape on him and we will change his clothes and sheets every 6 hours also. They will continue this for 12 hours after his last dose tomorrow.

Hopefully he does ok this time. All the doctors and nurses tell me they do this all the time and he will be ok but I'm still nervous. They said he may be able to come home for a week in between cycles but we will see. He is pretty happy today but I'm sure by tomorrow the side effects will kick in and he won't feel great.

Here we go

James' pre treatment work up took a little longer than planned. He has to have a PET scan done now Friday morning and then next Wednesday he will start his chemo. We meet with his doctor on Monday to go over everything. I'm kinda bummed they won't wait one more week till after Christmas but I also understand the sooner he starts the better. He is doing so great with his therapy he can crawl everywhere. They really wear him out. He has loved all the Christmas lights and decorations. Yesterday he said he needed to open his presents. Other than that we have just been enjoying our time together.

Last precious week

Well James will be starting his pre treatment work up this week. Next week he will start high dose chemo. We are trying to do as much with him this week as possible before he goes back into the hospital. We all got to go visit family for Thanksgiving and had so much fun. We told everyone it was our last trip we would get to do till he is finished with treatment, he had so much fun playing with his cousins.

James has been improving everyday. He had physical therapy yesterday and occupational therapy today. He can crawl and move all over. He is kinda like a new baby when they first start moving and getting into things. Once they start they get better and faster at it. James is definitely that way. He can push himself up now from lying down. Now if we can get him to stand I think that would be awesome! He went into clinic yesterday and now he only has to go once a week since his counts are all amazing. It's really great to see him be himself again. He still doesn't eat much, only candy really. He is still getting all his nutrition from his tube feeding though so I'm trying not to push him too much to eat orally.

I just keep telling myself it's only 3 months. 3 months of horrible treatment and awful side effects for a life time of having my sweet boy. I cannot wait for the day that he is done and we hopefully NEVER have to go through this again. I love my sweet little boy so much and I can't picture my life without him!