Home again

James finally got to return home yesterday. Now we know one fever equals four days in the hospital. He went into the clinic this morning just for a blood check. His ANC is a little low so they thought he might need a neupogen shot. Thankfully it went up a little from yesterday so he didn't have to get one. The doctor said sometimes their ANC will drop down and they need a little "pick me up" to help out. When we got their they always take vitals first thing and she took his temp and it was a low fever. I just thought "oh my gosh you have to be kidding me!" They waited ten minutes then took it again and he was fine. Hopefully he doesn't get another fever. He isn't allowed to go any where right now other than home and the clinic. I just don't want to take any chances, especially since his ANC isn't fantastic. He is loving being home and playing with Zoey and his toys. It's always nice because he always seems to be able to get right back on his normal schedule. On Sunday we are throwing a welcome home/done with chemo party for him. Make a wish is stopping by to surprise him and tell him his wish is going to be granted. He is going to be so excited and happy. He wished to go to Carsland at Disneyland. We don't get to go till September because he's not allowed to leave the state till mid June. Also I didn't want to go in July when I'm 8 months pregnant. He keeps asking if we can go now and I just have to tell him in a few months. He will start regular PT here in a couple weeks. He does really well with his walker and I think with regular therapy his legs will get strong quick.

Back in the hospital

Well James was doing pretty good till Sunday evening. We went to my parents for family dinner and he was just really cranky and didn't feel well at all. Later that night he got a fever of 101.4. So we called the doctor and told her what was going on and she had us bring him in. He was admitted shortly after they took his blood and gave him antibiotics. They always give him three different kinds to cover anything that might be making him sick. The blood cultures came back negative which is great. As long as they blood cultures continue to be negative and he doesn't get anymore fevers he can go home Wednesday. They have to monitor him and give him antibiotics for 48hrs before he can leave. So now every time he gets a fever we know to just plan on being in the hospital for two days. Other than that he will probably get some blood while he's here cause his hemaglobin was low. They also want to try to turn his feeds back on tomorrow or Wednesday. Hopefully he can do well with it and keep it down.

Home

James was finally discharged this afternoon. His doctors thought as long as I could handle everything he was ok to go. He has to go into the clinic tomorrow, Monday and Thursday. He will get his PET scan in a few weeks and then we will be transferred back to his clinic at Cardon's. We are so excited to have him home. He loves playing with his sister and their toys. Love having him home!

A few more

Yesterday they put in James' NG tube. He didn't handle it well. It took about an hour to relax and quit throwing up. Any sudden movements would make him start gagging. They did an X-ray on him just to make sure it was in the right spot and it was. Once we got his body to relax he only threw up once and it was because he sat up real quick. He won't get to get come home today because they just barely switched all his meds from IV this morning. They said the plan today is just to see if he can handle taking all his medication without getting sick. So hopefully he will be ok and will get to leave soon. I guess it's ok he doesn't get to come home today because we had our carpets cleaned yesterday and he can't go in the apartment for 40 hours after. He is also getting a speech evaluation today to see if he needs to continue with speech therapy or not.  We are all so anxious and impatient to get him home. It's hard to just relax and wait. My husbands favorite phrase is " I hate waiting" from Princess Bride. We definitely hate sitting here waiting but it's ok.

Two more days

James has been doing so good. The doctor said if everything goes well today and tomorrow he can come home Wednesday. He's been throwing up a little bit more lately so he won't get his feeding tube in today. Most likely it will go in tomorrow. He won't start his feed until his gut is healed a little more. They are just putting the tube in for me to give him meds for right now. James is extremely bored. He just lays and watches his netflix on the iPad. He is very ready to go home. I know once he gets home all he will want to do is play toys with his sister. I'm so glad they get along and love to play together. Hopefully everything will go well so he can go home!

Getting better

James is doing much better. His ANC went from 742 yesterday to 3008 today. He feels better and is pretty happy. He's had a little bit of a bloody nose yesterday and today. They are trying to figure out the best time to put the NG tube in. They are saying he can come home Wednesday or Thursday next week as long as his liver stays good. So far it's still ok and I'm hoping it will stay that way. Since his counts were all up and great he was allowed to go in the hall and ride in the little push cars. He had so much fun. He was so happy to be out of his room. He kept saying hi to everyone in the hall. Child life got him a little tricycle and he tried it out but quickly went back to the car. His little legs just aren't strong enough to push the pedals so he would get frustrated. His bottom looks much better and his mouth sores are almost all gone. I'm so glad he feels better. It's kind of weird to think that once we leave he won't have to come back except for follow up scans.

Better

James has been doing better. His fevers are all gone, thank goodness! Nothing ever showed up in the blood cultures so that means it was just a random fever. His liver is doing better as well. It's almost back to normal. They have been giving him medication to help and it has been working. The doctor said she will do everything she can to make sure he doesn't get VOD again. His mouth sores and bottom rash are still there. He coughs a lot just because he has so much mucus that sits in his chest. They decided a few days ago to put him on Ativan to help with the nausea. Well yesterday I had to argue for a while with the doctor to take him off of it. James has a reverse reaction to Ativan and Benadryl. When he's on it constantly he becomes extremely agitated and grumpy. Nothing calms him down, he's constantly throwing fits and is really hard to deal with. She told me he was only like that because of pain. James actually does the opposite when he's in pain. He's very mellow and subdued. It was just very frustrating to be told that I don't know my own son. Eventually she understood what I was saying and he's now only going to get it if he really needs it but the nurse has to ask us first.  The last few days have been tough for us as parents trying to keep our patience with him. Thankfully today he's not so cranky and is finally calming down. His counts are still zero so we hope in the next couple days they will come in. Once his ANC is up he will get the NG tube put back in and we will slowly start giving him formula. They said they will try to transfer him back to the Cardon's doctors as soon as they can since we live right by that hospital. He is very anxious to get out of here. I think he knows this is the last time he has to do this because he's already been making plans for thing which he usually doesn't do this early. Only a little bit longer!

Fevers and a bad liver

Friday morning about 2:30am James got a fever. He's had 3 more since then. They took some blood cultures to see if he had any kind of infection but everything came back normal and is still normal. This morning his eyes were slightly yellow and his liver level went up which isn't good. They did an ultrasound on his liver to just see what was going on since he has a history of liver damage. The ultrasound came back normal, his liver looks good. So they aren't sure why he's getting fevers. Now they will watch his liver very closely we don't want him to get VOD again because that was a nightmare. The doctor said as long as they catch it when it first happens they won't have to put a drain in his tummy again. I guess they can just give him some medicine and cut back on the TPN a little. He tells us a lot that he doesn't feel good. It breaks my heart every time because there is nothing I can do except hold him and tell him I love him. I know they say it gets worse before it gets better. I'm hoping this is the worst of it but knowing James' luck it's probably not. He's already making all kinds of plans for when he's done. He wants to go to the dinosaur land(natural history museum) and the aquarium. He also wants a vanilla cake with red frosting, haha. I think it's funny how specific he is. He will play for a little bit but gets pretty tired quickly. His naps have become very long. He sleeps from about 11 to 4. Hopefully he can get past the fevers and his liver won't get worse.

Cancer stinks!

Well looks like the side effects are in full swing. James has really bad mouth sores and his bottom has a real bad rash. He just feels awful. He won't play and he just wants to be held and cuddled. We knew this third round was going to be the toughest on him. The goal is to have him out before March 24th because that's my big ultrasound day and we want him there. He does have constant pain meds going so we can keep him comfortable. Other than that he's pretty much just watches his movies and rests. So proud of my strong boy!

Last Transplant

James has been doing very well. He's been a little bit sick lately just because he's trying to eat and drink more. He has finished his chemo treatment and received his very last Stem Cell transplant this morning. The doctors are always so shocked that he does so well. I guess most of their kids get really sick and have some bad side effects. It's just a nice tender mercy to know he doesn't have any. Now we just sit and wait for him to heal and get his counts up. As soon as they are up he can come home.

Just kidding

So they decided to do another nose swab just to make sure he indeed had RSV. Well results came back that it was just a cold. Thank goodness! So he started chemo Thursday afternoon and finished his very last day of chemo yesterday evening! Today and tomorrow are his rest days and then Monday he will get his last transplant. He is doing very well still but give it till about Tuesday and then the side effects will come. He has showers every 6 hours and hates them still. He cries the whole time and then when they turn the water off he's fine. His PT brought him a walker. It's like an old person walker but miniature size. He does really well with it, so she said she wanted to order him one for home. Other than that James is doing well. He's a little more tired but that's only because they wake him up a lot for showers. They did tell me his rash this time will be worse then the first two times. Hopefully it won't be too bad. Only 19 days till he can come home!