Little Fighter

Well today we could definitely tell James is starting to not feel good. He received platelets again this morning and his ANC has finally dropped. He would play but wouldn't really get to into it, which is a sign he isn't feeling great. One thing I've learned about my son is he is a fighter and has a big tolerance for pain. James won't say he hurts until it's unbearable and he's shaking from pain. That happened this evening. He threw up and there was a little bit of blood which means he has mucusitis and just didn't tell me he hurt. His rash this time isn't on his groin area it's all over his tummy, under his dressing, and all over his bum. I try to put cream on it as much as I can to keep it moist. They've started giving him some morphene to help with the pain. Poor guy is so tired and sleeps a lot. His poor body is just trying to heal and that takes a lot of energy out of him. Otherwise everything looks good his kidneys are working good and his liver is alright. His liver isn't normal but it isn't bad so that's good I guess.

Resting

James is doing well. He started his neupogen shots yesterday to help bring his counts up. His ANC isn't zero yet but they are expecting it to be in the next few days. He got some platelets yesterday, I don't think he needs any blood products today. He did his PT yesterday, his legs are getting stronger. I will be glad when he goes back to Cardon's for his therapy. They just seem to do slightly more with him and make him work harder.  He's only throwing up about once a day which is good. Still no mouth sores, his bottom is getting a little rash but that's normal. Other than that things are pretty much the same. Just resting and recovering.

Stem Cell Transplant #2

Today was transplant day. It takes them about an hour and a half to get everything ready and give him his cells. He did really well again. Usually most if their kids throw up and get uncomfortable but James was perfectly fine. His hemoglobin levels are low but they won't give him blood until later tonight. They just don't want it to mess with his transplant and if he has any side effects they need to be able to tell if it was from the cells or the blood. Other than that James is just resting. He still doesn't have many side effects but probably in the next couple days they will start to surface. He is done with showers which he loves! Yesterday all day he kept saying "no shower me" it was pretty cute. Now we just let him rest and heal for a couple weeks and then he gets to start all over again. We are so excited that he only has one more round of chemo to do. We are all definitely getting tired of living in the hospital and never getting to all be together. It makes me miss the days when the kids and I stayed at home all the time.

Chemo day 2

James got his last day of chemo today for this round. He is doing really well so far. Not too much nausea but again it takes a while for all the side effects to kick in. We did find out he has a sinus infection which he got last time at Cardon's I think around his second round of chemo. The only difference between now and back then is here at PCH they do a nose swab every time he comes before they start chemo. So they know now and can treat it whereas at Cardon's he kept getting all these fevers and they couldn't figure out why and then they figured out it was cause he had a sinus infection. The only thing that really bothers him is the showers. He gets showers every 6 hours to scrub the chemo chemical stuff off. He cries and throws a fit every single time. He will have to continue with showers till Sunday poor guy. He's still playing and having fun with his toys. He has actually been eating a little bit more which is nice. The next two days are rest days and then Monday is his transplant and then recovery. Two chemo rounds down only one more to go!

Hydration day

Well James is back in the hospital for round 2. Today is a pretty relaxing day, they just give him lots of fluids today. PCH decorated his room in dinosaurs this time and gave him more toys. Which I'm still trying to find places for the last bunch of toys he got. He is pretty happy to be here but I'm sure by this evening he will be done. Tomorrow we start chemo and we start the showering every 6 hours again. He hates that!

Are we or aren't we?

Well James MRI came back the exact same as it was before we started chemo. So they think maybe he has some nerve damage and that is why his legs gets cold. We got to go home Tuesday evening and were told he would go to clinic Thursday and probably be admitted for treatment. He still has a little diarrhea so they wanted to let his tummy rest a little longer. He has another clinic appointment on Monday and they want to admit him on Wednesday. We are happy to have him home a little longer but it kind of makes it difficult to take him back. He is playing all day everyday and asks to walk around a lot. It wears him out really good and then he sleeps really well.

Back and forth

Well we got to go home Friday night. It was short lived but we are grateful for the time we get to all be together. Monday James was supposed to go into the clinic for just a check up. Well everything was looking good then I had mentioned that I noticed James' legs have been cold from the knees down and it doesn't matter if we bundle them up they stay cold. The doctor told us that wasn't a good sign. So we had to get an ultrasound on both his legs and pelvis to check for blood clots. Well 5 hours later we finished and were told James doesn't have any clots which is good but they wanted to admit him into the hospital and get an MRI done on his spine. It's faster to admit him and get the MRI then try to schedule it. So he had an MRI Monday evening. James was way upset, he wanted to go home so bad. They just want to make sure everything in his spine is ok. If everything looks normal he can go home if not he will stay. He starts chemo Friday so if he has to stay it's ok. Other than that we are all ok. We are excited for this to be over, only two more months woohoo!

Waiting is the worst

James' counts are all up and he hasn't had to have any blood transfusions in a few days. They put the NG tube back in Tuesday and just started him on pedyalite. Then yesterday they put real formula in it. Well he had a rough night he kept throwing up so they turned the feeds off and aren't planning on turning it back on. He's having a hard time even keeping his meds down, but when you haven't eating in almost a month it's probably hard on the stomach. So he might get to go home tomorrow but they aren't sure because he's so sick. He starts chemo again next Thursday. I have to say the worst part of the treatment is waiting. We have like a week and a half where all his counts are up and he's feeling pretty good and we just sit and wait for the next cycle to start. His physical therapist got him this cool walker. He stands in the middle and it supports his back and sides and he can walk around. He doesn't walk far because he gets pretty tired but he does really good. She said even if he does it 5 minutes a day it will help strengthen his legs. His body is peeling pretty bad from the chemical burn and he finally lost all his hair. The last chemo he did just thinned it out real good but he didn't lose it. He asks for Zoey everyday but we FaceTime with her about every night so he can see her.

Almost out of here

Well James has been recovering well. His counts are finally coming up and he is starting to feel better. He is still throwing up but that doesn't go away for a while. His counts have to be up for 3 days before he can go home. They have been up for 2 days now. He will have a GFR done on Monday which tests his kidneys to get the right dose for his chemo next time. He will get to come home next week some time for about ten days then we will come back and start cycle 2. He still has a chemical rash under his arms, neck area, and groin area. It doesn't seem to bother him which is good but it looks like a bad sunburn. Other than that we are all doing ok. We felt like this cycle went by fast so I guess that means we are getting used to it. Thanks everyone for the constant love and prayers!