RSV

Well we were excited to get the ball rolling and finish this chemo. We had a slight hiccup, they always do a nose swab and blood work on the first day to check him out. James tested positive for RSV. So that means no chemo till his RSV is gone. If they did treatment now he could develop pneumonia which would be horrible for him. Also I'm not allowed to be even be in his room because I'm pregnant. The treatment mist causes birth defects so I have to wait till it's over. James is doing really well though the doctors are really surprised. He has been playing and having fun with all his toys. Hopefully this will pass quick and James can get well.

Happy at Home

Well James has been home since Friday evening. The first couple days were pretty rough. James was throwing up a lot all day and night. Thankfully I have an awesome husband who took the night shift and would get up with him and change his bedding. He is finally doing fine, it didn't help that James wasn't sleeping either. He went to clinic yesterday and they will admit him next Wednesday. He still has diarrhea so they want to let him rest a little longer. He's eating a little more and playing all day. His favorite movie is Peter Pan. He watches it at least once a day. We are so excited for him that he only has one round left. All his doctors are so excited as well they bring it up all the time. I just hope this last bit of chemo isn't too tough on him. Only 4 weeks till he gets to come home for good!!

Stir crazy

Well James is still in the hospital. He's supposed to get to go home tomorrow morning. They waited a little longer because tomorrow is his last dose of antibiotics so instead of sending us home and then having to come back every day we will just wait till he's done. We had a little scare and almost thought he wasn't going to get to leave at all. Zoey got a live vaccine at the end of January and James isn't allowed to be around her for 21 days. If I would have known that I would have waited on it. Anyway long story short the infectious team said he should be fine as long as Zoey doesn't have a rash or anything from the shot. He's still throwing up quite a bit. One of his nausea meds makes him sick lol. He's going a little stir crazy, he's just so bored! PT doesn't really ever come by and when she does she doesn't make him get out of bed. I feel bad cause I'm sick a lot or really nauseous so I don't really get him out and about either. Other than that pretty much the same stuff. He has to have another MRI in between treatments just to check on things. He probably won't come back in until February 26th unless he's doing amazing and has no diarrhea then he will come back the 19th. Only one more night and then we get to go home for a few days!

Homeward bound

James is doing really well. His counts are all up except platelets were low this morning. His cells are officially grafted in. They said he will get to go home probably Wednesday. He has his GFR tomorrow morning to get the next right dose for his last round of chemo. The only thing keeping him here is switching all his meds from IV to oral. As long as he can handle taking them he should be ok to leave. He is shedding all his skin like a snake. It's kinda nasty. He is very excited to go home and play with his sister who he hasn't seen in like two months. He's been a little cranky but that's ok. He has gotten very used to everyone doing everything for him all the time so we have been trying to make him get things and do things for himself. I think the nurses think I'm a very mean mom cause I always tell him no he can get it and then he gets mad at me. When he doesn't feel good I try and cut him some slack but when he's better I make him do it. We are excited to have him home for a week before he has to come back. Only one more round to go! As this last round draws near I find myself more and more nervous that the cancer will come back. They said it's very hard to get rid of a second time.

Low Blood Pressure

Well Wednesday morning James blood pressure dropped pretty far down. They said if they couldn't get it back up he would have to go to the PICU. Thankfully they tried a few things and it came back up a little. It's still not great but better than it was. It seems to only drop when he goes to sleep. His legs have been hurting which they say is because his white blood cells are rising. His ANC was 258 this morning but his platelets were down again so he will get more. His rash is now peeling all over which is good. He is playing a little bit more but is still pretty tired. His favorite movie right now is Tinkerbell(his dad isn't too happy about that). He loves playing Zombies and Lego games on the iPad. He's doing a pretty good job all things considering.

E. coli

James has been getting slightly better. He hasn't had a fever since Friday which is good. Also they found out what caused the fever. They found out he has an E coli infection. Thankfully the antibiotics have been working and there are no more traces of infection. They said it could have come from anything or anyone. He will stay on antibiotics for two weeks to make sure they kill everything. His counts have been a tiny bit better and he's starting to feel a little better. He's still pretty tired and doesn't play much. His rash is all over his back now. They have cream they put all over his body twice a day. It doesn't seem to bother him which is great. He has a couple blisters on his leg but he got that last time too. He likes to cuddle and have us snuggle with him in his bed. He pretty much just watches movies and sleeps all day.

Fevers

Yesterday afternoon James finally got a fever. For the last couple days his temp has been high but not quite a fever which usually means a fever is coming. So they took some blood cultures and started him on 3 different antibiotics. He got another fever during the night that was pretty high. This morning the doctor told us his cultures came back positive but they don't know for what yet. So he caught a bug pretty much but the antibiotics they are giving him pretty much cover everything. His poor rash is a little worse today. It's starting to itch so we have to keep him from scratching. His platelets were low again so he is getting more. They are also doing a urine culture on him cause yesterday his diapers smelled really bad. He was also hooked up to a pca pump with morphine so he is constantly getting pain medication. They said his bones probably hurt also trying to get all new cells. I feel so bad for him because he just lays there. You can just tell by looking at him he feels aweful. All his counts are still low or zero, hopefully in the next few days they will come up and he can feel better .