Back to reality

We had a whole week off of doctors appointments and it was great. James had such a fun time on his trip. It was really hot which made walking around uncomfortable but we still had fun. James loved all the rides. He got to meet Mater in Cars Land and it was a little overwhelming for him I think because Mater was huge. I hope James remembers this trip.
He went to clinic yesterday and they took his NG tube out. As long as James continues to eat and doesn't loose weight he can keep it out. I hope we don't have to put it back in because James loves having it out. He had his neruo psyc evaluation done this week. Pretty much they test to see what all he knows and where he is at developmentally. We don't get the results for a couple of weeks. James had a hearing test done right before we left and we found out he has severe high frequency hearing loss in both ears. He's getting fitted for hearing aids on Friday. He also scheduled to have surgery on his eye next Thursday so lots of stuff coming up. I'm just happy we are getting him back to semi normal. I know he won't ever be how he was and that's ok. I'm just so grateful he's still here with us. I pray everyday that the Cancer will stay away. He has his 3 month MRI coming up in 3 weeks and it's always very nerve wracking.

More surgery

Well James saw the eye doctor last week and we received good news and bad news. The bad news is that his right eye has permanent paralysis on the 6th and 7th nerve. The 6th nerve moves the eye right left up down and the 7th closes the eyelid. Our only option for him is surgery. So that's what we are going to do. The good news is that his optic nerve is normal and fine. So the plan is to have surgery to fix the muscle so his eye will at least look straight a head. Then we met with a plastic surgeon who will do another surgery to fix his eyelid. He might never be able to move his eye to the right but at least he will be able to see better. He has also gained a pound since last week, yay! He has been eating more and more which is great. His therapies have been gong really well and he's getting so strong. Next week we are doing his Make A Wish trip. He wished to go to Carsland in Disneyland. He is so excited to go. He still has no hair on his head, they said its probably just taking a while since he's had lots of treatment. Today we go back to see the Audiologist about his hearing. My poor boy, I'm sure he's tired of doctors. I know I am.

Weight loss

James is still doing really well. He went into clinic today and everything is looking good. The only thing that is still a struggle is his weight. He lost a little weight so we are trying to figure out what to do. They put him on an appetite stimulant to see if he can get a little more hungry. Hopefully it works and he can start to eat more and gain some weight. His doctor isn't too worried about his weight but we definitely don't want him to loose anymore. Other than that he is doing pretty good. He is still going to his therapies every week. His PT has been going well. Today she had him try to ride a bike. It's pretty hard for him to push that right leg. It's funny you don't realize how much strength it takes to do simple things like that. Tomorrow he goes to see the eye doctor about his right eye. Hopefully they can tell us some good news. We were looking at pictures from this time last year and we have noticed his right eye has definitely gotten worse. I think I'm just a little nervous they are going to tell me it can't be fixed. James loves holding his baby brother and loves playing with his sister. He is such a joy to be around we love him so much.

Staying home is boring

James has been doing really well. Today he had PT and went to clinic. He is getting really good at walking. One of the goals is for him to not loose his balance and not fall, all week. He already failed, haha. He just starts going faster than his body is ready for and he falls. All his therapies are in the morning now which is super nice because he does way better and is really ready for nap after. He's getting better with his OT also. He has his eye appointment next week to see if there is anything we can do to fix it. He had a hearing test last week but fell asleep during it so we get to try again. He is still bald and it doesn't look like hair is coming in any time soon. He likes having a schedule and having things to do everyday. When he doesn't have any appointments he isn't really sure what to do at home. Staying home all day is boring for him. He is still playing with Zoey and having fun with his new baby brother. He asks everyday when does he get to go to Cars Land. He is very excited to go. We love having him home and we love knowing he doesn't have any more treatment to do. Hopefully it will stay that way.

Busy boy

I didn't realize it had been so long since I last wrote. James is doing well. He went to clinic today and saw Dr. Li for the first time. Dr. Li couldn't believe that James can pretty much walk now. James' blood counts are all good. They are now working on building his weight. James only weighs 32 lbs and is in the 21st percentile for weight. I have to chart exactly what he eats for a week so that the nutritionist can look and see just how much he eats orally. Also we are supposed to make him wear his eye patch more often. He hates the eye patch so we will see how that goes. He started all his therapies this week. We go to the hospital 4 times a week with everything he has going on.  Tomorrow he has an appointment to check his hearing. I hope they don't say it has gotten any worse. Then in two weeks he goes in for his eye. He really enjoys being home and playing with Zoey. He tells me all the time that he loves being home. For now he will just have clinic once a week and have MRI scans every three months. We are going to Disneyland in a few weeks for his make a wish trip. He is so excited! We hope and pray the cancer will continue to stay gone and we can try to get back to normal.

Free at last, free at last!,

James had his final day of treatment this morning. We are so proud and happy for him. After he woke up and relaxed he got to pick out a few new toys. Sam called and facetimed with me so I could then see James bang the gong. It's made me so happy for him. Then they went to go see Dr. Kahtua and he said that he looks great! His skin looks so much better! Then they told him that he was clear to go home! He is so excited to come home. They are hanging out with Uncle Ben and Aunt Britt tonight and then waking up super early tomorrow and driving all day. We are so so proud of James. This was the very last thing he has to do treatment wise and it has been such a long road for him. Now he just has MRI scans every 3 months and weekly visits with Dr. Li. I can't wait to have my sweet little boy home!

6 rounds left

James is doing pretty good. The fatigue has finally caught up with him. He gets very tired very quickly and has no trouble taking a nap and going to bed at a normal time. His head is still pretty red but it's started to peel. His ears are also really red and they actually hurt him a little. His doctor today said that, that is where they are pointing the beams right now so his ears are going to be a little more sensitive. His spine has some redness also but it doesn't seem to bother him. Other than that he is still doing everything else normally. Still plays in the play room a few times a day and is getting better and better each day walking. I'm excited for him to go back to PT and have his therapist see how much he's improved. He misses his mom and Zoey but is having a fun time with his dad. I think it's helped the boys get a little closer being together. They are thinking he might have to stay a couple extra days after his last treatment just to make sure his counts are ok but Sam is trying to convince them to just let them leave the next morning. I'm pretty much due any day now so Sam would like to try and get home as quickly as possible. Hopefully they make it, if not James will have a new sibling waiting to meet him when he gets home.