Eat at Chili's on Monday!

I just wanted to post that tomorrow the 28th, if you eat at any Chili's restaurant in America, they will donate 100% of their profits to St. Jude childrens hospital for cancer research. This is such a wonderful thing for them to do and who doesn't like Chili's, right? Hope you all can help make a difference and contribute to finding a cure for this horrible disease.
Thank you.

MRI Today.

Wow, what a day. Ashton had his MRI today which was scheduled for 11:30, but when we got there we found out there was a mix up and it wasn't going to happen until 1pm. This actually worked out really well because he needed a good amount of fluids because he was severely dehydrated. On Monday we got the OK to take out the feeding tube to see how he would do on his own. Turned out, he wasn't ready at all. He didn't eat a thing for two days and barely drank anything but sips of water throughout the day. Last night we started noticing he was acting more sleepy then usual and this morning he was pretty lethargic. Good thing we were going up to Stanford today! He had his labs done first and his dr. knew that he hadn't been drinking, so he was set up to get normal saline before the MRI. After he got the liquids we got the results of the lab draw and his glucose was pretty low. He ended up getting a second round of fluids with sugar. Poor guy....he tanked so fast. His dr. was actually surprised at how quick he got dehydrated and mentioned that he is pretty fragile. So, he got his feeding tube back in when he was under anesthesia today and we are going back on his normal feed schedule. We will try again in 6 to 8 weeks, but basically he has definitely got to be drinking A LOT before it comes out again. This means he will have the tube during our Disneyland trip, but that's ok. In a way its comforting to know he will be getting all the nutrients he needs.

So the big news is that the preliminary results of the MRI are in and its all clear! We have to wait for the "official" results on Monday but his dr. said she see's no change from before, yippee! I was very nervous today, but man yesterday was the worst! I was in such a bad mood all day and felt like I would cry at the drop of a hat. Everything was off...but now I can exhale and enjoy the next three months. I know the next MRI will be even more stressful for me because Ashton will be 4 months out of treatment. This will be big because he won't have the chemo in his system and of course I will be out of my mind with worry. But for now I am so happy.

Also, he didn't get the botox injection in his eye today. The eye dr. came in and said that since he didn't find out the date of the MRI until Monday, it didn't give the insurance enough time to approve it so we will just do it next time. I was a little apprehensive about getting it today anyway. His eye seems to be getting better on its own and it will be better to give him 3 more months to see what happens.

So, great news for now! Ashton continues to get Physical therapy as well as occupational therapy. We will be working on him chewing food again. He seems to be scared of it and hopefully within the next couple of months he will be weaned from the feeding tube all together. Thanks for all the prayers and positive thoughts! Keep them coming please!

Ashton's lumbar puncture was scheduled for this Friday, but that will be put off for a couple of weeks because his platelet count isn't as high as they would like it. I will make sure to update when he has that procedure done and what the results are. Also I will update on Monday when we have the "official" MRI results.

I also wanted to mention that Ashton's little buddy Ty is finally NED after a long journey through treatment! We are so excited for him and his family. But, just like us, they will be watching him closely for any signs of relapse. Just like Ashton's cancer, his can come back at any time which really makes us happy with each and every day we have with our boys. For now though, his family is celebrating just like ours is and in my heart I believe both these boys will live long happy healthy cancer free lives. Go Ty and Ashton!

The Hospital, again.

Today we came home from a 5 day hospital stay for fever. Ashton got a little warm on Saturday, nothing too high. But, to be on the safe side we had to go into the ER and they admitted him because of his low white count. Well, it wasn't low, it was pretty much zero. It was good we went in because he needed platelets and red blood, bad! He did amazing the whole time we were there, never acted sick at all. Today his counts showed signs that they are rising so we got to go home! We said goodbye to the nurses and staff like we wouldn't be staying with them anymore. I sort of wish we hadn't because what if it jinxed me and he relapses. I know from many stories that they can relapse weeks, months, or even several years from now. How horrible to have to worry about that! My heart hurts everytime I think of the burden that will put on our family, but at the same time I also feel such gratitude to have Ashton here with us now. I need to take one day at a time and watch him carefully for signs of the cancer returning. One major sign would be the vomiting first thing in the morning. I'm going to be a wreck each time he throws up! Pretty much for the rest of his life. So, the next big thing is his lumbar puncture to check for cancer cells and his MRI. The LP is first, but I dont have the date yet. The MRI is set for Sept. 23rd. I will be out of my mind that whole week but will definitely update as soon as we know the results. I'm not even sure if anyone is reading this anymore! :) But if you are, for now we are going to be working on getting Ashton stronger and we are so excited to see some hair grow back! This is a VERY exciting time for us, but also very scary. We are on our own now with no chemo so basically it feels like treading water in the middle of the ocean with no land in sight. Does that make sense?:) Also, please continue prayers and positive thoughts for our friend Ty. He had a really important scan today and we are hoping to hear he is finally cancer free. He is such a cute tough kid!
I will update soon.

He's DONE!

Well, today at about 2:30 I watched as the last dose of chemo was administered to Ashton. It was a very small amount, part of the protocol is to give Vincristine on day 1 and day 9 so this was "officially" his last treatment! WOOO HOOOO! I really hope I'm not jumpin the gun when I say he's done for good. Every time I tell people I try to knock on wood, just in case. I don't want to jinx myself. So, he is feeling really good! He is still gaining weight and hasn't been sick at all since last weekend. Its as if he didn't really have that last treatment at all. He does have all the low counts now though. We are keeping our fingers crossed for no fever again. His platelets are getting low and so is his hemoglobin so the dr. already scheduled him to have transfusions on Monday. Once his counts go up though we get to watch him heal, grow hair, and the part I'm most excited about is seeing his eyelashes grow back. He had the most amazing eyelashes. This is such a great time! Unfortunately it will be short lived once Sept 23rd rolls around. Thats the date for his next MRI and even as I think of it now I get butterflies in my stomach. I am trying to stay as positive as I can. He has fought so hard and done so well. So, HOORAY to ASHTON! My little man, my sweetie, my HERO! You are an inspiration.

I wanted to see if everyone can get those prayers and positive thoughts going for Ashton's buddy Ty. He is having some big scans this week and we are all hoping his cancer is gone, or at least shrunk. You rock Ty! Thank you Carmen for posting about Ashton too :)

We're finally here!!

Hooray! Ashton finally started his last treatment today! Things are quite different this time around. There were no beds available up at Lucille Packard (Stanford) so we are at El Camino Hospital in Mountain View. Lucille Packard has a satellite here and there are the same doctors and nurses we are used to. Also we found out we only have to stay here one night! I am so happy! His chemo is going to be much easier this time. My big hope is it won't be as hard after and he won't get a fever. It would be so nice if this was his FINAL hospital stay!

We had a surprise visitor a few hours ago. We were sitting in our room when the nurse came in and said that Alexis Briski's father was in the hall and wanted to say hi. I couldn't believe it! We haven't seen him since before Alexis passed.
We had a nice long talk...he is doing ok. The family is keeping busy. I think seeing him and seeing that he was doing alright was very comforting to me. Her death affected us so much, Pat and I. It was a big heartbreak for us because she was the first child we knew of who didn't make it through this horrible battle. The funny thing was he was here visiting a relative in a different part of the hospital and came by the peds ward to visit the nurses--Alexis had many treatments here. He happened to ask our nurse if she had heard how Ashton was doing. He was surprised when she told him he was actually here now! Anyway, his visit was special to us and we will definitely be keeping in touch.

So, if all goes well, we will be out of here tomorrow night. Please send all those positive thoughts once again. I will let you know how it all goes.

Still waiting...

Ashton hasn't had his last round of chemo yet. He went in Monday for his regular check up and blood draws and his platelets aren't high enough to begin. The hope is by this coming Monday they are up enough for him to be admitted Tuesday or Wednesday. He also had another hearing test Monday. This test showed no change..his hearing is stable. The doctors have decided that he should not have the Cisplatin this round. Even though his hearing is good, the benefits of one more round of the Cisplatin are no different then if he didn't have it. But, there is a risk that his hearing could be damaged further. So, this last round will be much milder. He will only have the Vincristine and the Cyclophosphimide (sp?) This means only a 2 night stay and I'm sure he won't feel as bad following the treatment. We really want him to have plenty of time to recover a little before we go to Disneyland in October. I know the effects of all of this won't wear off for quite some time and he won't be feeling 100% for our trip, but that's ok. As long as he isn't feeling sick to his stomach like the last time we went to DL, he didn't enjoy anything.

He also started some physical therapy at Dominican Rehabilitation. Now that he is home more, I really want him to get some aggressive treatment so he can run again :) He is still so weak, but getting around more and more. Keep your fingers crossed that he can finally get this last round this week and that he doesn't get a fever so we can be home. Thanks everyone, I will keep you posted...

He made it!

Ashton made it this month with no admit for fever!! I am so surprised and so is his doctor. He is feeling good and at his last blood draw, his counts were all up. It has been so great to be home. He will have his next, and FINAL, chemo mid August. Wouldn't it be nice if he was fever free for that one too?

I can't even describe the feeling I have about almost being done with his treatment. It just feels fantastic! I see him improving all the time and it makes me so optimistic about the future.