Botox

Today Ashton had his first eye appointment and the results of the test they gave him are very good. He has absolutely nothing wrong with his vision. The only thing wrong is the weak nerves that are keeping his left eye from looking all the way to the left. The dr. told us we have two options. 1. surgery, which will be very effective the only con is after surgery his eye could continue to correct itself and that would make his left eye turn more to the outside. This could be corrected again with another surgery. or 2. Surprisingly he could get botox injected into the stronger nerve. This would be able to be done when he is having his next MRI in August. If he did the botox, it could take a few days for it to be fully corrected or he might need to get another injection at a later time. This could also cause his eyelid to droop for about 3 weeks, but I can live with that. Either way we go, the doctor says his problem is completely fixable. I'm so happy about that. After his eye exam, we went over to the hospital for his normal check up. He is doing so great. He got to show off his new walking skills and really liked having all the doctors in the room giving him attention. He did have to have a platelet transfusion, which made for a long day but hey, by now I'm used to it.

The other night when Ashton was having his obvious reaction to the drug Reglan, I got out my camera and took a nice long video of him. This video has come in very handy because I have been able to show each doctor exactly what he was doing. Explaining it to them just wouldn't be the same. Today Dr. Fisher asked if it would be OK if he could get a copy of the video to show students and let them have a good look at what they would really need to look for. He said sometimes the text books just aren't enough. I kind of felt honored to have him ask that. Its neat to know that Ashton's video may be a useful tool for future doctors.

Now we get to rest for the remainder of the week. Lets hope that on Thursday, when our home nurse come over and does his blood draw, everything will be good and no more transfusions!!! 2 more rounds to go, GO ASHTON!

10 days....

Ashton was just released this afternoon from the hospital. He had got a fever on Tuesday, the 15th and sure enough he had no white count which means automatic admission. This time our stay was 10 days. UGH! Time went by pretty quickly though. There was much to do and a lot going on. He ended up having a bladder infection so it was good we came in when we did. He spent almost the whole admission feeling great and wanting to play so we were pretty much out of his room most of the time. On one of his walks with Pat, Ashton twisted his ankle which required him to have an x ray. Everything looked fine, just showed some signs of swelling and he didn't walk on it for two days. Thank goodness for the wagons they provide at LPCH! Ashton has been gaining so much weight and you can really feel it when holding him. He is doing so well! So now we are looking forward to some fun and relaxing times before the next chemo. Summer is here, the warm weather and no school means fun and less stress for us. No having to drive back and forth to pick up kids for a while! We are so looking forward to the 4th of July parade here in Scotts Valley. My friend Ruby is sponsoring a float for us and we will walk in it as "Ashton's Circle of Hope" I am inviting anyone who wants to walk with us to join us. The fireworks afterward are going to be great. The 4th is one of my most favorite holidays. Anyhow, that's whats been going on with us. Sorry for not updating sooner. I always update on Facebook so many friends knew we were in the hospital already.

Other new news is Ashton will be having his first eye appointment on Monday. His left eye muscle is still very week and his eye turns in most of the time. I'm not sure what we will do about that whether he will have exercises or if surgery may be in the future. I can't wait to find out. Also, we don't know for sure yet, but Ashton's doctor thinks she may not give him anymore of the big chemo Cisplatin due to the slight hearing loss he has had. This means he may not feel as sick with these last two chemo's and it definitely means one less night to have to stay in the hospital, yippee!

Also, I know I mentioned a few posts ago about a new drug Ashton had started to take for nausea. This drug was called Reglan. It worked wonderfully for quite a while. He seemed to feel better and have much more energy because of it. Well, on the Thursday before last, Ashton started to make weird faces and smack his lips. I didn't catch on until later that night when his dr. stopped by and mentioned the reglan and the side effects. I had been warned of these side effect by my Mom, and yes Mom, you told me so. Anyway, I guess his doses just started stacking up and finally he got some of the strange effects from this drug. Needless to say he will NEVER take it again. It took him a few days for it to wear off and sometimes, for some people, it never does. You can google it, there are terrible things said about it. Thank goodness we caught it when we did.

Well, that's all for now. I'm so looking forward to this next week with not much to do. I will update more later.

Quick Update

Ashton's 4th round of chemo went incredibly well. We have been home since Friday and he has only been sick a few times. I'm about to take him up to LPCH for his regular clinic visit and blood draw. I'm sure his white count is zero now so please keep those PT's coming, it would be so nice to have a month with no fever.
He continues to get stronger each day and is walking on his own more and more. Its amazing.

Round 4 next week.

Ashton is doing so good right now. He is really coming out of the radiation fog he had been in. The doctors say that it should be completely worn off by July and you can really tell he is changing. He is back to his old cheerful and happy self. No more yelling and acting out. He has also been wanting to walk lately. He took about 7 steps on his own the other night. He was walking at the end of radiation, but he got knocked down from the sleeping syndrome the radiation caused and then he started chemo which kept him in bed alot. Now that he is feeling better he wants to do so much more.

He had a hearing test done yesterday which shows a teeny bit more hearing loss. Nothing major but the doctors want to take his Cisplatin down to a 50% dose. It is great that he is getting the 4th dose of that, which is what they were hoping to get in to him without a great amount of hearing loss. I'm not sure if he will be doing a 5th course of that one. He still will have two others to do regardless...thats why each time he has chemo we are in the hospital for 3 nights.
He was set to start chemo today, but after his blood draw yesterday, they decided to wait. His patelet counts aren't what they want them to be and they hope for them to rise by Monday. This way they won't have to lessen the dose of Cyclophosphomide.

So thats where we are at right now. We have scheduled a trip to Disneyland in October. We really need something to look forward to. I had a really hard day last week when I saw a story in our local paper about a boy who passed away from Medulloblastoma. Its amazing how my day can change in an instant. The day got better when Ashton's dr. called with the good news about his lumbar puncture being clear. I told her I was glad for good news and she asked what was wrong. I began to cry and told her about this boy, who she ended up knowing. She told me to remember that each case is different and that there are more good outcomes then bad. She reminded me that we only hear about the bad outcomes. I try to remind myself that each day.