Over due

Sorry it has been months since I've written about James. He's doing alright. He had an MRI and it showed some thickness that keeps growing. They said it's not a tumor but they don't know what it is. So they sent the scans to his radiation oncologist in Houston but I found out they sent it to the wrong Doctor so we are still waiting. Hopefully we find out soon because I've been waiting two months to find out. He's still growing really well. He's been on a break from PT for a bit but we will probably start that up again. He starts kindergarten in a few weeks and is so excited. He thrives on a schedule and isn't really sure what to do without one. He's on thyroid medication now also which his doctor said isn't a surprise. Other than that he's doing well and we've enjoyed our summer!

Progress

James has been doing really well. He went and saw the endocrinologist a couple weeks ago and the doctor told us that he has grown 3/4 of an inch. Which is great and means the growth hormones are working. He upped his dosage a little bit. The only bad news was James' recent blood work now shows he has hypothyroidism so he takes medication for that now also. The doctor said it's pretty common for kids like James to have all of these different issues because they are all controlled by his pituitary gland which was damaged from treatment. It was nice though we knew he grew a little because all of a sudden his shoes were too small. He goes in to see his ophthalmologist next week and also his pediatrician for check ups. School is going great. We had an IEP meeting with everyone who works with James. He will not need to be in a special need kindergarten class next year because he is doing great. Obviously he does have some things still he needs help with that OT and PT are working on with him. He loves going to school and being with his friends. All his teachers just kept telling me how amazing and sweet James is(I already knew that)! He stopped doing physical therapy at the clinic just for a couple months and will restart in July. We got a letter in the mail yesterday saying it's time for us to schedule his next MRI. I feel like they come so fast. It always makes me anxious and worried but hopefully things will continue to be good for our sweet boy. He is just doing so well and it makes his whole family happy. We will try to keep you posted on results from all the different doctors.

MRI

Well it's that time again. A couple of weeks ago James had his MRI checkup. To say it didn't go well is putting it lightly. Here in Utah they don't do general anesthesia on children for MRI's unless they absolutely have to. Well last time he had an MRI done here they barely got everything they needed because they just gave him some medication to help "relax" him. I told them not to do that again because he screamed and cried through the whole beginning of the MRI. Did they listen? Nope! They did it again this time and surprise surprise we couldn't get James to relax and then they barely got what they needed from his brain but no spine. I was so mad! It's no fun to watch your child sit there and scream and cry for his mommy. And then the nurse tell me they can't get all his scans. So today we went and had them finished and they put him under general anesthesia. We haven't heard back yet what the results of his spine images are but we know his brain is all clear and no signs of cancer. They said most likely the spine is clear as well so that is good news! James is doing really well in school and enjoys it so much. He's still doing PT weekly and some days are harder than others for him. She works his balance problems a lot and when she tries something new and challenges him he struggles and cries. Other than that everything is the same and going well!

Long time

Well it's been a while since I've updated on James sorry. He had plastic surgery to put a gold weight in his eye which went well. His eye has healed nicely. Also he started growth hormones a couple weeks ago. I learned how to give that injection to him. He is due for his next set of scan next month. School is going really well. He's in a special needs preschool right now but his teacher said she thinks he will do just fine next year in a regular kindergarten class. He's still not potty trained that's something we are working on but aren't sure if he has control still. He loved the holidays and thankfully hasn't gotten any bugs that have been going around. Everything is going good. He's doing great and we are so proud of him and how far he's come.

Still healing

James had his eye surgery and everything went good. His eye is a little bit straighter! He is healing nicely and his doctor is very happy with how it looks. He also had a test done to see if his cortisol levels were ok and it turns out he has adrenal insufficiency so was put on medication. For those that don't know what that is, your adrenals are connected to your kidneys and they send cortisol to your pituitary glands when your sick or stressed to help your body but his isn't doing that. It's a lot more serious than I thought. His doctor told us he could go into shock if he doesn't take his medicine. He will be getting all his teeth fixed in a couple weeks. We also heard back from his oncology team and they got his scans from AZ and the "thickening" they thought that was abnormal isn't. It's been there for a while and hasn't grown or anything. So now as long as his oncologist is ok with it they want to put him on growth hormones. So we will see. He's still loving school and started PT again. He misses home(Arizona) a lot. We are going to try and visit soon but we will see.

Bad teeth

James got his glasses last week and he looks so cute. It's funny to see him now without glasses. He has his eye surgery next week. We saw his ophthalmologist and he said James' eye sight is improving but it will take some time for the right eye to adjust. We went and saw a dentist for James because he said his tooth hurt. Well he had a cleaning and check up yesterday. He has very bad teeth. He will have to have caps on all his teeth except the top and bottom front four. He will end up having to go the hospital and put under anesthesia to get all the work done. I feel like every time we get one thing figured out another thing turns up. We got the results from his stimulation test. James has a hormone deficiency and needs to be on growth hormones. The catch is the MRI he just had showed thickening and we don't know yet if that is normal or not so he can't take it. If he has cancer cells the growth hormones could possibly make them grow faster so we have to make absolutely sure he has none. Other than that he is doing well in school and loves playing at home. Hopefully his surgery goes well on Monday and his eye gets straightened out a bit.

Glasses

James has had a busy week. On Saturday he did his stimulation test for hormone growth. It took about 6 hours total. He did a really good job. We got the results back yesterday and he does have a hormone growth deficiency. So most likely he will be put on growth hormones to help him. We meet his doctor in a couple weeks to go over it. Yesterday he went to his new ophthalmologist(whom I love) he's a great doctor. I like him  much better than his old one. They did lots of checking on his eyes and said he needs glasses. His right eye was a -4.50, which is pretty bad. His left eye just has a stigmatism. We picked out some cool glasses.  He is also scheduled for surgery in three weeks to try and straighten it out. We were also referred to a plastic surgeon and saw him today. He wants to do  surgery a month after the eye straightening one. They will put a weight in his eyelid to help close it. We did confirm with radiology and they said it won't affect his MRI scans at all. So hopefully we can fix his eye so that he can see well and can close it now. I hate putting him through more surgery but eyes are pretty important. He is still doing school and loves it. He loves riding his bus and comes home and tells me all the fun things he did. So grateful for my sweet James!

NED

James had an MRI and the results were clear. They said that there was a spot of thickening on his brain that they didn't know if it was already there from last scan or if it was new. So they have to get his MRI scans from AZ. We met his new oncologist and she was very nice. She actually knew one of James' old doctors at PCH. He had a hearing test and it came back to no change which is good. He also had a echocardiogram and that was normal as well. He has he hormone growth test in two weeks. He's doing really well. He started school today and was so happy and excited. He loved it.

Growing?

James went to see an endocrinologist a couple weeks ago and they sent us to do some blood work and get a hand X-ray. We finally got the results back and his blood work showed his thyroid is working normal but his X-ray shows his bone are the age of a three and a half year old so he has some growing problems. They want his to do a 5 hour test in a couple weeks where they give him different medications and see how his pituitary gland does with them. Once he's finished that they will put him on a growth hormone to help him grow. He has an MRI next Friday and then he has a bunch of other tests a week from Monday. Since he's one year post radiation he has to have a bunch of different things done. He fell down some stairs the other day and scraped up his face really bad. He doesn't do well with stairs because his balance isn't very good still. He starts school in a week and is so excited! He's so excited to ride a school bus. Other than that he is doing great. He is having fun playing and being our sweet boy.

New doctors

We have been living in Utah for almost two weeks. Trying to get new doctors for James is quite difficult. His new oncology finally called me back and they have a bunch of stuff they need James to do. He has to get an MRI, spinal tap, and an echo. He sees the endocrinologist on Friday to see why he's not growing. Most likely he will have to take growth hormones. The only doctor we are having trouble with is his old ophthalmologist. The one in Mesa just won't call me back so I can get records to his new doctor. It's extremely frustrating! Other than that he's doing really good. He has fun and likes going to the park close to the house. We are trying to get things set up for school also and hopefully it all works out!

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!

Clinic

James went to clinic this week. He is doing pretty good. His blood counts are all good. Hemoglobin is a little low but hopefully it will get better. He will be getting his next MRI in about 3 weeks. I feel like he just had scans done. He has been tilting his head to the left more so lately than normal. His doctor is a little concerned. He doesn't know if he's compensating for vision or balance or if something is going on inside his head. Hopefully the scans will be clear! James is doing well in pt. They make him work hard and are trying to help him be more independent. He's lost a little weight, which isn't surprising because I've noticed his appetite has slowed down. If he loses anymore weight they will put him back on his medicine. We are going to California on a fun family trip next week and the kids are so excited! We are going to give potty training another go once we get back. I pray that he can learn this and his body will be able to do it. He wants to be like his little sister and wear "big kid" underwear. I love my sweet boy and I just want life to be a little easier on him. He is the sweetest boy and loves everyone dearly!

Doing well!

Yesterday James had tubes put in his ears. He's doing great! He woke up happy and relaxed. He was back to his normal self as soon as we got home. He's doing really well in his therapies. He had speech this morning and he has met almost all his goals already. The only thing he still has trouble with is saying the "s" sound when it's at the beginning of a word. His therapist switched him to twice a month now instead of every week. If he keeps doing well then he will probably go to once a month. He goes into clinic next week and hopefully everything looks good. We've been talking about getting him in pre school in the fall but I'm afraid he won't be able to since he is still in diapers. He has absolutely no desire to be in underwear. He still doesn't have control over his bowel movements. Hopefully in the next month or so we can start trying to potty train him again. Other than that he's a very happy boy!

More surgery

James had an eye appointment this week. His vision in the right eye is getting better! But his eye won't close all the way so they want to put a little gold weight in his eyelid to help keep it closed. That won't happen till April cause the surgeon is very busy. We also went to his ent and immediately they said he needs tubes in both ears. He has tons of fluid and snot in his ears. His doctor said hopefully it will make him hear a little better. After this hopefully he will be done with any procedures. Other than that he's doing well. Getting stronger and talking better.