New hospital

Well my husband got a new job which is great but it's in Utah so we are moving. He starts on the 27th so it's pretty quick. We had a clinic visit this week. It was our last one with Dr. Li. I didn't think I would get so emotional but I started crying when I had to tell everyone. I have loved all of James' doctors and nurses so much. They have become like family to us. Dr. Li kept telling me that the hospital there is great and everything will be fine. I'm just scared they won't really care for James as much as the doctors here. James' counts are all great and he's getting really strong. We had to cancel his Endocrinologist appointment because we don't have insurance. We also will have to reschedule his eye surgery. I'm not excited to find all new specialist for him. We found a preschool for him to go to but we can't start the process till we get there. I'm excited for our families new journey. I will keep updating on the new clinic and everything.

Leg healed

On Wednesday we took James for a check up with his orthopedic doctor to check his right leg. The X-rays look really good. His leg is healed up nicely and won't need to be seen again, unless he breaks something. He had his preschool meeting this week and he will be able to get therapy through the school. He starts in August and is so excited to ride the bus! Clinic will be in two weeks and then he's due for another MRI at the end of July. If everything goes well he won't have to go to clinic every month just every other month. He's still not eating a ton. He's just never really hungry, I always have to just make him sit and eat. Hopefully he can get used to eating and he will gain some weight. My husband lost his job yesterday and that will definitely make all of James' medical needs a little more difficult. We have faith though that we will get something great and everything will be ok. James is still improving everyday and doing great.

Lost weight

James went to clinic this morning and everything looks great except one thing. His height and weight are not where they should be. He has lost weight and has only grown half an inch. He's supposed to grow 2" every year. So they put him back on Megace and said he needs to drink lots of pediasure. He's also seeing an Endrocronologist to make sure everything is the way it's supposed to be. He won't get to see that doctor till July though. He sees his orthopedic surgeon in two weeks to check his leg. Hopefully we gain get some meat on James and help him grow a little. He's doing really well other than that. All his doctors are very pleased and happy with how well he's doing.

Surgery #11

James had his special needs preschool evaluation this week and it went really well. He got in we just have another meeting in three weeks to go over everything. They did an eye test while we were there and told us we probably needed to take him in which thankfully he had an appointment with the eye doctor two days later. We went and saw his eye doctor which was the longest appointment ever! His old eye doctor had to take a medical leave of absence and they don't know when he will be back so we have a new doctor. Anyway he said James will need to have patching everyday for at least an hour. Also his right eye is near sided so he will need glasses but he can't get glasses till his right eye gets fixed. The doctor thinks he needs another eye surgery to try and make it straight. If it's not straight the glasses won't help so in August they will try to fix it again. The doctor said it is going to be a lengthy process because his eye is very damaged from the brain surgery. We know his eye will never be normal but we want him to be able to see well. Other than that he is doing great. He finished swim lessons this week and had so much fun. He's excited for school to start!

Having Fun

I didn't realize that it had been so long since I've update James' blog. He is doing great! Clinic this month was good. His platelet counts are the highest they have ever been, which is great. He had another hearing test and they said it's still the same which is good we don't want it worse. He is getting new ear molds for his hearing aids, which means his ears have grown a little. Hopefully he will start growing more. He's been about the same size this whole time. We found out we won't have to go to Houston this summer for his one year check up. They are going to just do it all here for us instead. He has to meet with a bunch of different specialist to check and make sure everything is going ok post radiation. We are getting James ready for preschool. He is being evaluated next week for special needs program. Hopefully he gets in because then he can get all his therapy through the school which would help. He's been taking swim lessons with his little sister and they have so much fun. James is really enjoying being a kid and playing and having fun! Hopefully things will continue to go well for him.

NED

James has been doing really well. He had an MRI on Monday and we finally got the results today. He is still NED(no evidence of disease)! We are so excited! The day before his MRI and the days after are so stressful and worry some. I'm so grateful Heavenly Father has granted us more time with this sweet boy! James also met with an eye surgeon to put the weight in his eye since it doesn't close. Well after we had his MRI we talked to the oncologist about it and he said right now we should wait to do that. Since he will be having scans every 3 months for a long time it's best to wait. The weight would interfere with his scans so we wouldn't get a great picture. He also had a hearing test today and his hearing is the same it was last time which is good. He'll have to get new ear molds as he grows but other than that he's doing good. He's still doing therapy and it's going really well. I'm so happy he's improving and growing strong. Hopefully everything continues down this path and he remains cancer free.

hanging in there

James still doing good. He went and saw the ent and his ears are nice and clear. He also went to clinic and all his counts are good. They are still concerned about him tilting his head. They said its a sign that something isn't right inside. James has been doing it though for a while so I think he's just trying to compensate for his vision or balance. He's getting stronger and enjoys being able to do things. He wants a bike for his birthday so in pt they are trying to get him strong enough to push one. He sees the eye plastic surgeon next week to talk about options for his eyelid. His hair still isn't comp back. They said it can take 2 years sometimes before it all comes back. He just looks like he has a funky Mohawk. Other than that he's doing really well. He should have another MRI sometime this month. Hopefully it's good news!