Little update

Well, we are still home! No fever yet! This is the first time Ashton has gone this long after chemo without getting sick with an infection!! I'm hoping we get to all stay home this time around...he is doing so well. We did spend the day at the hospital today because he needed a platelet transfusion. We also spent all day Friday there too for red blood cells and platelets. He loses those platelets so fast! But the important thing is no fever.

There is also good news about his hearing. He had another hearing test today which showed his hearing is stable. Actually his hearing was a bit better in the right ear. This was most likely due to ear wax that was removed. He will have another test closer to the next chemo to determine if he will have more Cisplatin. So today was a good day. He continues to grow stronger each day and continues to amaze us with the progress he is making.

Round 5, Complete!

We got home this afternoon from Ashton's 5th round of treatment. Once again, he did really well. This time he didn't even sleep a super long nap like he has done in the past. We could barely keep him in the room! Good thing there are places to go and things to see while we are there. Now, we wait. I'm almost positive that in about a weeks time I will be posting that we are going in for a fever. It has happened every time, but wouldn't it be nice if just for once, it didn't happen? I would be so surprised. Hope everyone is having a wonderful summer, and guess what?!! ONE MORE TO GO!

Chemo Set-back.

I wish I was typing today about Ashton's 5th round of chemo being completed, but unfortunately that isn't the case. Last Monday Ashton had a hearing test and blood draw. The good news is his hearing has stableized...there has been no further loss. This means they will go ahead with another dose of the Cisplatin. This is good because they want to get as many rounds as they can, but bad because it does make him feel icky. The bad news was that, on Monday, his platelet count was too low to go ahead with Chemo last Tues. So, now we do the same blood draw tomorrow, Monday, and hopefully those platelets will go up enough for him to start round 5 this Tuesday. It seems like it is taking forever to start this fifth round and I'm so anxious to be able to say that he only has one treatment left.

Ashton has been making so much progress with his walking. He has been walking all over the house without holding onto anything. His balance still has a ways to go but each day he continues to grow stronger so I'm confident he will get there soon.

I will update later this week and hopefully I will be able to say "ONE MORE TO GO!"

Parade Today!

Happy 4th of July! Today we will be walking in the Scotts Valley Parade. Anyone and everyone is welcome to come and join us. The more the merrier! We stayed out late last night working to get everything ready and I have to say, Its going to be fabulous! The people who have helped organize this are so talented and crafty! Thank you all!! I hope to see a bunch of people out there for Ashton. It will be a day I won't soon forget. He won't either :)

Monday Ashton has his hearing test and the results will determine whether he will stop the Cisplatin or not. After the test, he has his regular appt. for his check up. He is scheduled to start his 5th round of chemo on Tuesday. Keep him in your thoughts...he is doing so well and we really want it to stay that way!

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.