The BEST gift ever!

I wanted to write real quick and let everyone know that Ashton's MRI came back all clear! Happy Holidays!!

The Holidays...the good and the bad.

So we've past Thanksgiving and Christmas is approaching fast.
This time of year has been a million times better then last year. For one thing, I am so incredibly more appreciative of everything that I have and feel so blessed to be in the moment we are in. Things are going well, very well. Ashton has been making huge leaps in his recovery. He is almost running....sometimes he walks so fast that I need to tell him to slow down, especially in parking lots. I forgot what that was like. He is amazing. There are still hurdles to get over, but they will be taken care of. I would love for him to start Pre-school either in February or March so we have some time.

I've got all the decorations up and we are all in the Christmas spirit. It is so nice to not be having the feelings I did last year. It was so hard to see everyone going about their Christmas routines and know that I just couldn't be happy like them. I was in shock still, we were in crisis. This year, I am celebrating!!
Please don't think for a second that I'm not afraid of the future and how many Christmas's we have left with Ashton. I fear that all the time. I try to be positive though and imagine having him here for the rest of my life. Thats all I can do, because to do any different would be a waste of time, and possible something I would be sorry for in the future.

Ashton just had a hearing test done this week and he did wonderfully. There has been no further loss of hearing. It is stable, the same as it was 4 months ago. They say they don't recommend hearing aids at this time. Although, it may be something he needs later, but we won't know for sure until he starts school.

Now, I wanted to mention that although the holidays are much happier for us this year, there have been a couple of losses that have deeply saddened us. Our friend and fellow cancer patient up at LPCH just recently lost her battle. She was such a sweet, beautiful girl, only 2 and 1/2 years old. Her family had been up at that hospital for at least a year which meant little "Tootie" spent almost half her life there. She leaves her bigger sister, her mother, and her Father, who I know must be feeling such despair at the moment. You guys, our hearts go out to you. It was so great getting to know you all. Also, another family, some friends of friends of ours, just lost their baby boy. I can't imagine how either of these families are feeling right now. So as we go about our busy lives, getting ready for Christmas, please remember that there are parents out there facing their worst nightmares. Remember, Christmas is about giving. When you are asked about donating to St. Judes this year, please do. Even if its just a dollar. Or if you happen to be at McDonalds, and you see the change jar for The Ronald McDonald house, please drop some coins in. This organization helped both of these families, and there are always families who need this place to stay. It would help so much!

Now, I'm going to ask for everyone to send us prayers and positive vibes. Ashton is set to have his next MRI coming up on the 22nd. Three days before Christmas. Having a clear scan will be the greatest Christmas present of all. I believe he will but in the back of my mind, I can't help thinking if this scan may be the one that changes our lives once again. This is the first MRI after being completely off treatment, which is kind of scary. So please think of him that day, thank you.

A year ago, already.

If you were to peer into my life, one year ago at this very moment, you would find me and my family at a strange hotel, in a strange town, without Ashton. You would see me tossing and turning in a queen bed, next to Cassidy, trying my hardest to get to sleep, knowing there was no way on earth it would happen. When I woke the morning of November 12th, 2008, I had no idea in the world the way things were going to turn that day. I would never had believed you if you told me Ashton would be spending the night in the PICU at Lucille Packard, in a medicated Coma, away from us all for the very first time. When I think back to that horrible night, I feel a huge sense of sadness and coldness. I remember being so cold. I believe I was in shock. Dealing with the news that your baby has a brain tumor and he would need brain surgery in the next few days, hadn't sunk in quite yet. I remember the nice male nurse who told us he would be watching Ashton all night long. He said we could call him anytime during the night, that he would let us know how Ashton was doing. We did call, I think Pat called twice. I remember getting in the car in the parking lot and seeing his car seat, empty. I remember looking in the bag I had been carrying the whole time and finding his tiny shoes. His van slip on's with dragons on them. And then there was the shirt I had dressed him in that morning, only it was now cut from neck to hem to allow emergency medical personnel access to his chest. I still have it, its heartbreaking to look at. All this stands out so clear in my memory and I still feel the emptiness even now. As I tossed and turned that first night, I knew there was no way sleep would come. I crept out of bed to not wake anyone, and shut myself in the bathroom and just cried. The tears wouldn't stop. I did end up waking everyone, but it was no matter. A small while later, we got a call from the hospital saying they were going operate on Ashton in a half hour and to leave right away. This was strange because initially they told us the surgery would be in a few days, but we found out later that his blood pressure was dropping and he needed surgery right then. We got lost on the way, our hotel was a good 15 minutes from the hospital, and we barely made it in time to give him a kiss before he went into the operating room. I remember just wanting him to be awake so badly so I could comfort him. At this point, even with the horrible news of the tumor, I still was holding out hope it was benign. It wasn't until during the surgery, one of the doctors came out to talk and told us the MRI he had had the night before showed a few more lesions in the brain and spine and that it was cancer. The bad news just kept coming. Those couches on the second floor, the ones to the right of the elevators, they were my families compound for the next few days. You parents who have children treated at LPCH probably know exactly which ones I'm talking about. I don't think I sat up much that day or the next. Thank god for the couches, I remember having a pillow from a nurse and blankets and just camping out there during the day. There were a lot of tears. But, there was a lot of laughter too. Family and friends came to be by my side. I remember a few friends in particular who traveled quite far to be with me...I will never forget how just them being there made things so much easier. The way people came together was amazing. Thank you you guys....you all know who you are. A few days went by, Ashton's surgery went great, and they were ready to wake him up. That was another day I will always remember. Before they woke him, the nurses decided to shave the rest of his hair off. The doctors had only shaved the area needed for the incision, but it made him look strange. These nurses were so sweet, they even offered to cut Carter's hair, which was very long at the time, but he wanted none of that! I still have a bag of Ashtons blond hair. I had a feeling it would be a while before it would be that long again, and I was right. Ashton woke slowly, they had to lower the breathing machine gradually so his body would take breaths on his own. He did wonderfully. His whole recovery was amazing. A couple of months ago, during one of our chemo admits, I ran into the man who helped us the first frantic night we came in to the hospital. He was the one who took us back to see Ashton, and set us up in a hotel. He told me that he kept up with Ashton's progress as much as he could. He said from what he saw, Ashton has done an incredible job. He really and truly is a strong boy. That really made my day.

So, a year ago, right now, I was feeling very lost. But now, as I hear Ashton's sleepy breathing I am comforted. He is here, he is happy, and he is strong. And that is why every November 12th we will celebrate. This whole experience has given us a new appreciation that I hope, actually I know, others have learned from us as well. We need to cherish our children and our families. You never know one day to the next what will happen and people can be taken from us in the blink of an eye.

Disneyland

Wow, what a trip! 5 days at the magic kingdom and I'm still recovering. We had so much fun! Ashton really had a great time. He really was treated so kind by the employees down there. He got to go right on the rides without waiting, he even got to ride them twice if he wanted. Characters went out of their way to talk to him and hug him. Peter Pan and Wendy even stopped during a big street party celebration and came up to him for a chat and photos. He really had such a blast, we all did. I had been looking forward to this trip for so long, its really kind of sad that it is over and done with. The one thing that really got to me though was the stares. Oh my goodness, everyone we passed seemed to stare at him. Some children even came right up to his face. Only a few asked, and really I would rather them ask. I know I shouldn't let this bother me but it is so hard. I know the adults who stare are sad for him. Sometimes I could hear their comments as they walked by. Sometimes I would see them whisper to each other, or children whispering to their parents. I decided I would smile at them, to let them know everything is ok, which worked for a while but then It would start to bother me again. There were times where Ashton insisted on walking by himself. His walking is not that great, which would bring more attention to him. When people looked at him then I felt so proud, like this is my brave boy, my hero, YOU don't know what he has been through, but I DO. I tried to hold my head high because his spirit is so great, it doesn't matter what he looks like or how he walks. The fact that he is TRYING is what makes me so proud. But, then again, I really wished I packed Ashtons shirt that says "are you staring because I'm cute?" Sadly, I forgot it. I know that in the future, I will NOT be one of those people who stare. I will though give a smile and say hello. There were those people and I was so grateful for them. One of them was a girl who was about 18 or so. She was in line ahead of us and she was so sweet to Ashton. She knew he had something wrong but all she wanted to do was talk to him and make him smile. That felt great. I never thought I would be so affected by the stares and I guess I should have expected them, especially being in a place with SO many people. It made me feel like we were some sort of freak show and my sweet son was the star. There were a couple of times where I mentioned to Pat that I felt like yelling, Yes, he had Cancer, but he is all right now...he is a survivor! Maybe I will have a shirt like that made!

Some good news, Ashton's eyelashes are back! His eyebrows are too and he is getting some serious peach fuzz on the top of his head. His hair is growing in darker and it is really fine. The back part is still bald though and we aren't sure he will ever get hair there, but no matter, we will make do somehow. That isn't what is really important anyway, I just don't want him to get teased later on in life.
Its amazing how different he looks though with eyebrows and eyelashes. They make a huge difference.

We pulled his feeding tube again this morning because it got clogged somehow. Nothing would go in and it had been over a month so I figured we could give it another try and get one put back in if he doesn't eat. So far he is drinking, but not eating a thing. He doesn't want to lick things either. He used to like to do that. He says things taste funny. His doctor thinks it may still be too early and I do too. Luckily I have a friend who has very kindly offered her services, she used to be a nurse, and I will be calling her in the morning to get his tube put back in. Bummer! We just need to have patience.

Ashton is still in therapy, physical and occupational, and will be for some time. He is doing great though, making progress each day. Its very gradual but he has come so far from just a month ago. He can now stand up from sitting on the floor all by himself, which is huge! He is trying so hard and thats what counts.

Lumbar results

I wanted to write a real quick note to let everyone know that Ashton's Lumbar Puncture went very smoothly and the results are back and they are wonderful! No cancer cells in the spinal fluid! We are so happy :) Our family is leaving this coming Sunday for a week long trip to Disneyland. We are so excited, Ashton especially. He can't wait to see Mickey!

MRI

I'm late at letting you all know that the official results of Ashton's MRI is ALL CLEAR!! Yeah, I knew deep down that it would be but it is still such a relief.

We are at the point now where Ashton won't be seeing the doctor very often anymore. His next appointment is for 3 months from now, which is when he will also be getting his next MRI. He will be having the lumbar puncture next Tuesday, very early in the morning. The doctor feels that this will be all clear too, but I'll be worried until I find out for sure.

Ashton is just doing better each day. He is wanting to taste foods more lately, and by taste I mean lick them. He doesn't want any solids in his mouth at all still. He is making progress though, little by little. I will update about the LP next week. Keep those PT's and prayers coming that its all clear too, please! They are working!

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.

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.

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.

Ashton's Doctors

I wanted to share an article I found about Ashton's doctors. Dr. Edwards is my hero...he is the best of the best! And Dr. Fisher is just the greatest guy. Very funny and nice. We couldn't be in a better place! Dr. Michelle Monje is our doctor we deal with most of the time. She is mentioned in this article and works under Dr. Fisher. She is one of the smartest and sweetest people I've ever met.

The Dark Realm of Brain Tumors, Lucile Packard Foundation for Children's Health

Lumbar Results...

Got the news today...All clear! Just wanted to post quickly, I'll update things later.

Alexis.

I just found out that the little girl I wrote about a few days ago passed away on Saturday.
I am so upset, even though I knew it was going to happen. Here is her obituary.

Alexis Briski Death Notice: Alexis Briski’s Obituary by the San Jose Mercury News.

Lumbar Puncture Tomorrow

I wanted to let everyone know that Ashton is having a lumbar puncture tomorrow to check his spinal fluid for cancer cells. The last one he had was all clear and that was after having lots and lots of cancer cells in the initial test. Please think of him tomorrow...send us all the PT's you can! I'm feeling pretty good about this though since his MRI was all clear.
Thank you!

"Hi Ducks, I have Cancer!"

We were released from the hospital on Friday and we got home around 5pm. We thought we would be leaving earlier in the day, but it turned out Ashton needed another platelet transfusion so that took some time. Our stay seemed to go by so fast this time. I think part of that had to do with the fact that Ashton was never that sick. He obviously wasn't feeling his best because of this red blood count, but it didn't feel as dangerous as the last admit for fever. That's not to say this stay wasn't hard...it was. It was mainly tough because of the reality of our situation. It hit home again but not because of Ashton, this time it was because of a little girl down the hall.
Back in December we attended an event called "Fantasy Flight" I wrote about it at the time.
While we were there, Pat met another dad whose 11 year old daughter was fighting bone cancer. It had begun with pain in the arm which they thought was due to her playing softball. She had a tumor and by the time they discovered it, the cancer had spread to her lungs. Pat told me her story after meeting this man and pointed this little girl out. She looked fine to me...long blond hair, happy smiling face. She was busy playing with her sister and didn't look sick at all to me. Time went by and we saw this dad from time to time but it wasn't until recently that we started seeing them while we were in-patient. They seemed to be in-patient all the time. I got a glimpse of this girl one day as she was walking down the hall...her arm was in a cast and her hair was very short and she had obviously lost a lot of weight. But, she still had a smile on her face.
Pat got a chance to talk to the dad and he told him that they had gone on a trip for her "make a wish" and almost instantly once they returned her arm began to hurt again, the tumor was back and it was bad. A few weeks ago we found out that she had to have her arm amputated. I felt so bad for her...what must it be like for an 11 year old girl to go through this?? Terrible. Well, during our stay this last week, Pat had another chat with her father and he told Pat that they had found out that she wasn't going to make it...her battle was close to over. I was devastated to hear this. I couldn't stop thinking of her, or her family the rest of the day. Our ward in the hospital is made up of all single rooms, with one exception. There is one shared room and we had to stay in that room a couple of months ago and had a pretty bad experience. While complaining I asked why they even had a room with two beds. The nurses explained that it was actually made to accommodate a family in the event a child was to pass away. The room was much larger then the rest. I was shocked and horrified to be put in a room where children have died, but the staff reassured me that it was a new ward, and since most families choose to go home, it hadn't been used for this purpose. That was a relief. Now back to this girl. The morning after Pat told me their terrible news, I was walking in the hall. I was passing by this girls room just as her mother was coming out carrying a bunch of bags. I didn't know what to do...what do you say, do you smile? I just looked and she looked away. I figured they must be going home but then noticed she was headed towards "that room" My heart sank. So, this experience has really made me sad. I don't know this girl or her family, but in a way they are part of our "cancer family" and to find out someone is losing their battle affects us all. My heart goes out to them...and I hope they find the strength to make it through. Its just not fair.

During our stay this time we began walking..not Ashton, but Pat, Carter, Cassidy, and I. Each evening we would do a lap around both hospitals and it would take us about a half hour. Being cooped up in a room all day makes you feel so lazy, so we've decided to do this each time we are there. I want to continue to take walks each day...this time with Ashton. We took one yesterday and he really liked it. While on our walk, we passed through the park at the bottom of our hill. There happened to be a few ducks waddling in the grass. I said "Ashton, look at the ducks! Hi Ducks" and then out of no where Ashton said, in the cutest sing song voice, "Hi Ducks, I have Cancer!" My mouth dropped open. I had no idea he knew that word. We have never talked about it that way. We have explained that he had a bump in his head and we are making sure it doesn't come back, but I can't remember ever telling him he had Cancer. So, he obviously is hearing more then we thought. It was heartbreaking to hear him say that. He is so sweet.

Last night I went to a friends house for a little get together. There were a few women there who I had never met, and who didn't know about Ashton or what my family is going through. The subject never came up. I remember listening to them all talk and feeling so envious about how care free they all seemed. I can't wait to feel that way again. This morning has been a pretty gloomy one for me and I have to put on a happy face for a BBQ in a few hours. I've been grieving for our old life, they way things used to be. But, I know this too shall pass and tomorrow will be a new day.

I forgot to mention...

The official result of Ashton's MRI is ALL CLEAR! I can't believe I forgot to add that in the post below!

Blood.

I am finally able to post, the wireless service has been out here at the hospital for a couple of days. It has been so frustrating!! Ashton is doing well now. He went two days with a really high heart rate, and we didn't know why. When we first come in to the hosptial with a fever, we have to go through the Stanford ER which is where they do the first blood test to check his counts. The ER test showed that his white cell count was zero, but his red count was 10 and they don't give transfusions unless it is under 8, so 10 is pretty good. Well, after 2 days of his high heart rate and no other symptoms, he had another blood draw. This time his red count was VERY low, so low that the doctors thought it must have been an error, so they drew it again. It came back the same...very low. The drop it made was alarming because it could mean internal bleeding, but Ashton looked well and had no signs of that during the exam. They immediately ordered him to get blood and he actually had to have 2 bags when he normally has one. Poor little guy...his heart rate was so high because his body was working so hard to pump what blood he had. He is doing really good now. The dr.s think the initial test done in the ER must have been an error. The drop it made was just too dramatic. They also believe that Ashton is just a really sensitive little guy to chemo. His body takes a huge hit. They think this may be how it is for him each cycle....Chemo admit, fever admit...then chemo, then fever. Thats how it has been so far for us all. So now we are waiting for his white counts to recover. When they do we can go home.
I also wanted to encourage everyone to get out and give blood if and when they can. I never knew how many people depended on it until now. There are many children here that need it almost everyday and mine is one of them.

Already back.

We had such great news yesterday regaring Ashton's MRI.
We were all so happy and I decided it would be nice to take him out to Westcliff
for a walk. It was beautiful out! We knew the weather this weekend was going to be so nice, so I kept thinking of all the fun stuff we could do together as a family. We even got the OK to take Ashton in the pool! Unfortunately, after an early Costco run this morning, I came home to feel Ashton and he was warm. Took his temp. and it was 100.9. I wasn't going to take any chances this time around so I started packing immediately. After many hours in the ER, he is back as an inpatient with a fever and no white count. This time there are no other symptoms. We are waiting on blood cultures they drew in the ER. Its possible he just has a fever from having no white count, but we'll see. I know this time he isn't as sick as the last fever admit.
I will post again when I know more.
Dori

The MRI

Ashton had his MRI today and he did such a good job. He woke up so different this time, he was quiet and happy. Nothing like his 7 weeks of radiation.

Anyway, I wanted to let everyone know really quickly that the dr. called me this afternoon with the preliminary results....she saw nothing! There were definitely no tumors present. She has to tell me that the official results won't be available until Monday, but from what she can tell, he is all clear! She said she compared it to his last clear MRI and nothing has changed. I am so happy! Now we can all enjoy this weekend with the beautiful weather and just be thankful for everything we have.

I will post on Monday what the official results are...

Exactly 6 months today.

Today marks 6 months since my family's nightmare began. I can't believe it has been that long already. With all the appointments, treatments, and normal crazy life, it has gone by so fast.
I was looking at old photos earlier and the Ashton I see in them just isn't the same one I know now. He has changed so much. Not just in looks but in age...even through all of this he has grown and matured more then I thought he would. He isn't a baby anymore. 6 months is a lot of time.

We have been home for 4 days now and no fever so far! (knock on wood)
He has been feeling a little less energetic due to the chemo, but he is still so much better
then he was before he started his nausea medication. I also was told he may be feeling better because the radiation is wearing off. I didn't know this, but it can stay with him for up to 6 months after his last treatment! That would mean by July it should be completely worn off.
The dr. told us on Monday that this is the toughest time for him during chemo. I was shocked.
If this is the toughest its going to get then wow he's doing good! I can't wait till all his counts go back up and he can get together with his buddies again. Now that he is feeling so good and the weather is nice, I'm anxious to get him out and about. I have to wait though because of immunity issues, but in about 2 weeks we should be good.

We have a very big day coming up this Friday. He is having another MRI to make sure nothing has grown back. Please keep us in your thoughts and prayers....I'm going to be feeling horribly anxious until we get the results, hopefully not long after the scan. We have to be up at the hospital at 7:30 in the morning which means we have to leave our house at 6:30. I will update as soon as we know the results. Keep your fingers crossed and send us all the positive thoughts you can! We need them again!

So far so good.

Ashton ended up being admitted for treatment on Tuesday instead of Monday. The dr.s wanted to him to have another blood test on Monday to check his counts. So we came in on Tuesday at about 1pm. I have to say, things have gone SO WELL, so far that is. He has only been sick once on Tuesday night, which I think is amazing. Again, I'm going to give credit to his new medicine. It has made such a difference. I don't know if I've ever mentioned they way it works once we get here. The first thing that has to happen is Ashton needs fluids. They hydrate him and check his urine to make sure he is ready to tolerate the chemo. This can take quite a few hours.
Once he gets the go ahead, he gets a syringe of the first chemo, Vincristine, which only takes a few seconds. After that he is hooked up to the big one, Cisplatin. Its the one that causes hearing loss and scares me the most. He started that at about 5:30 Tuesday, and it runs for 6 hours. While he was getting it we were able to go up to the playroom and bake cupcakes and just have fun. He has been feeling so good! So thats the first night. Immediately after the Cisplatin is done, they flush him with so much IV fluids. Since his Cisplatin was done late in the night, he was hydrated all night long and woke up with such a puffy face! It goes away as he pee's it all out :) On the second night we are here, he receives his third chemo, cyclophosphamide. They give it exactly 24 hours from his first dose. This one runs only an hour but again, he is hydrated a huge amount afterwards to flush it out. This is the point we are at now. He had that last night. So tonight he does a SECOND dose of Cyclophosphamide, which runs just like the first. This means tomorrow we can go home! I am amazed at how well he has tolerated everything this time around. He constantly wants to be out of the room playing somewhere which is a sign he is feeling good. Once we get home though is when the watching and worrying start. Oh, I forgot to mention that he will get another syringe of Vincristine, the one that only takes a few seconds, next week. That one is no big deal, nausea isn't even a side effect. Back to the watching and worrying...He typically, as in the past two rounds, develops a fever during the first week we are home. His blood counts drop so drastically. Please keep your fingers crossed that maybe this time around that wont happen! I would love that, and so would he, I'm sure.

Next week is going to be a big one for us. He is scheduled for his next MRI on Friday. I can't believe it has already been 3 months since we got the word that he was all clear. He will be getting these MRI's once every 3 months for a couple of years. Even as I am thinking about this now I am nervous. I can't imagine how I will be feeling Thursday night. The drs have told us numerous times that the MRI's will always cause us high anxiety, which is totally normal. Something I do not look forward to. Please continue to send prayers and positive thought that he is still all clear and he does not have a recurrance.

On a lighter note, we were told yesterday that they would be broadcasting Monsters vs Aliens to all the patient rooms. This movie is still out in the theatre but they get movies here for the kids who are too sick to get out. Anyway, some of the animators from Dreamworks were here, going from room to room. They came in Ashtons room and luckily Cassidy was here too. She got two sketches, one of Ginormica (sp) and one of Gloria from Madagascar. Ashton got one of the blue blobby thing from monsters and they even did two of Shrek for Carter, Shrek and they donkey. It was so cool.

Ready for round 3.

We came home from the hospital last Saturday and Ashton is doing wonderful! We were supposed to come home on Friday and were in the car and almost to the freeway when we got a call from the dr. to come back. We were set to meet up with an home nurse who would be setting up Ashton's antibiotics-he will be on them until this Saturday for the staph infection. Anyway, something happened and the nurse canceled so we had to stay one more night. It was tough on Ashton, he was so happy to be coming home but he got over it pretty fast.

The dr.s have tweaked his feeding schedule because he was throwing up so much and wasn't able to keep much down. He was being fed all day and night on a continuous feed, but now he is having 4 bigger feeds a day which makes things so much easier, we don't have to carry around all of the equipment all the time now. I love it! He has also started another anti-nausea medication which seems to be working really well. He had such a good day today, almost like old times.

He is scheduled to start his 3rd round of chemo on Monday. I can't believe we are almost half way done. Of course I am concerned about this causing more hearing loss, but compared to the alternative, its really nothing. Please send all the PT's you can to Ashton and pray he has another smooth hospital stay. I will update soon.

Shoes.

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each
day I wish I had another pair.
Some days my shoes hurt so bad
that I do not think I can take
another step.
Yet, I continue to wear them.
I get funny looks wearing these
shoes.
I can tell in others eyes that they
are glad they are my shoes and
not
theirs.
They never talk about my shoes.
To learn how awlful my shoes are
might make them uncomfortable.
To truly understand these shoes
you must walk in them.
But, once you put them on, you
can never take them off.
I now realize that I am not the
only one who wears these shoes.
There are many pairs in this
world.
Some women ache daily as they
try and walk in them.
Some have learned how to walk in
them so they don't hurt quite as
much.
Some have worn the shoes so long
that days will go by before they
think
about how much they hurt.
No woman deserves to wear these
shoes.
Yet, because of these shoes I am a
stronger woman.
These shoes have given me the
strength to face anything.
They have made me who I am.
I will forever walk in the shoes of
a woman who has a child with
cancer.
~~Author unknown.

I got this poem from another mom whose son is fighting the same cancer Ashton is.
These boys are warriors! I want to dedicate this poem to this mom, Catherine, and to
Carmen, whose little warrior Ty is back in CA after having intense treatment done in NY.
Also, to Becky, Kim, Eileen, and Grace, who give me such hope.
We all wear these same shoes.

Ashton continues to get better but we will be at the hospital until his white counts recover.
Each day he is looking more and more like himself...a little bit at a time.

Good news, Bad news and Mothers intuition.

The good news is Ashton woke this morning and the first thing he said was "I had such a good sleep, Mommy." He is looking much better and acting better. Not back to his normal self completely, but definitely better then yesterday. The bad news is the dr.s all came in a few minutes ago and confirmed to me that my mothers intuition was right on. He has a staph infection that started from the sore on his nose and went to the blood. They said they think we came in just in time. If we would have waited, things would NOT be good. They started him on some heavy antibiotics yesterday, the kind that are made to fight staph, this particular kind. They are going to watch him very closely and do a blood culture each day to make sure his infection doesn't go to his heart, or any other vital organ. The dr. does think he has turned the corner though because his heart rate is back down, his fever is down, and the sore on his nose is less red.

They took his feeding tube out yesterday because of the sore, so today he had to get another one in, on the other side, and it was tough. He is doing better now and is playing with a dr. who came in to check him out because he has been just sitting and staring in a trance like state. He is playing now though and wearing rubber gloves.

Boy, I don't know how I'm going to get through these next few months. I wonder if there will ever be a time between chemo's where he doesn't need to be hospitalized. I sometimes wish, as hard as it is, to just be able to stay in here until he is all done with treatments. Please, everyone, send us prayers and positive thoughts that Ashton will overcome this infection and get better soon.

Back in the Hospital

Ashton and I are back at LPCH, He got a fever this morning. We will most likely be here until his white counts go back up which could be anywhere from 2 days to a week. I have to be honest, I'm a little scared this time. We don't know what is causing the fever and he is just not acting like himself, he's a little off. He is really tired and right now fell asleep in a totally weird position. He is laying face up like he fell asleep looking at the ceiling and normally he lays on his side. I don't know, it could be nothing. My intuition is telling me something isn't right. He also has a high heart rate, around 160. Its at 170 when he is upset. Normal should be around 120. They think it could be because he is dehydrated, but he has had alot of fluid so far and it is still up. Also, he has a skin infection on his nose. His feeding tube was irritating him and the skin around it got really red and swollen and started to bleed when we were in the ER today. He is on 2 antibiotics so hopefully that takes care of it, but I am a worrier by nature and of course I'm worried he has some flesh eating super bug that won't react to the antibiotics.

I have come to realize that I will never be the same in any ER again. I think I really truely have anxiety problems when I am in them. I just couldn't rest today and kept thinking at any minute Ashton was going to have a seizure or some other type of episode. He was acting weird and sleepy and his eyes couldn't focus on me at one point and they started to shake a bit. The nurse saw it and called in the dr. who checked him out and his eyes were ok. But I got that horrible feeling in my stomach again, just like I did on Nov. 12th. The dr. said that if it happened again he would have a CT scan. I can't wait for this chapter of our life to be over with. I have lost 12 lbs so far due to the stress, and I'm eating more then ever. Please keep those positive thoughts coming...help Ashton get over whatever it is this time and get home soon.

A day of transfusions.

We went up to LPCH yesterday for Ashtons second dose of Vincristine. He wasn't scheduled to have his blood drawn until today-Thursday-but he had been really sleepy and pale. Tuesday, on his birthday, he was in such a deep sleep I couldn't wake him up. Needless to say that was really scary and caused flashbacks to the day we found out about his tumor and he was in a coma. He did wake up when Carter came in and tickled him, I didn't see it, I was in a panic in the other room calling his dr. But everything was ok, only the dr. thought he should have his blood checked the next day instead of waiting. Good thing because his white count is zero, and he needed a red blood transfusion AND a platelet transfusion. We were up there all day. It does seem to have done the trick, Ashton is happy and playing right now. I am so worried he will get a fever though....I don't want to have to be in the hospital again, although, if that happens, I will just go with the flow--of course!

So, before his appointment, his dr. met us to talk about the hearing test results from the day before. She was concerned, more then I thought she would be. She said we had three choices, 1. go ahead with the normal dose of chemo next time, which his protocol says is ok to do only she and the team of dr.s are more conservative about this. Her suggestion was 2. lower the dose of Cisplatin because it will definitely cause him more loss next time... a lower dose would not be as harmful. Or 3. Stop the Cisplatin all together. I really don't want to do that. I want him to have as much chemo as he can tolerate...I wouldn't be able to live with myself if I stopped him and the cancer came back. So, we decided then and there to go with number 2, and just cut the dose back. It was really surprising to me that this hearing loss happened so fast and she was concerned, but she did say it was expected and this was normal. They want to make sure he doesn't loose the hearing he needs for his word development. This is just all so scary, but necessary. He is feeling good today and doesn't seem to be nauseated, which is such a relief!

We have four days off from the hospital, yeah! That is unless he gets a fever. I feel like we are on vacation! :)

Yesterday, I asked the dr. about the chances of this tumor recurring. She said it was the same as the chances of long term sucess, which is 40-60% I was shocked! I thought they said 65-75% cure rate and I had been thinking that all along!! My spirits were down immediately after that, but she told me once again that there was no reason to think he wasn't going to be fine and those are just numbers. Still, I dwell on stuff like that...I want answers and I know there is really no way to know what the future holds. It sort of brought me back down to reality...in the back of my mind I am always thinking that we are at this place in life just temporarily and that things are going to be just fine in a few months. I guess its some sort of denial. Funny how I can start to take things for granted again. I really thought that could never happen. Its healthy for me to think positive though, I just can't imagine anything else. But I do need to remember that each day is precious that he is here, that all the kids are here.

I should mention that those percentages above are not children who are in the study that Ashton is in. He is the first at Stanford. They don't know the numbers for kids on his protocol. Lets all hope and pray that they are better!

Today Ashton is 4.

Today is Ashton's 4th birthday. I am feeling a bit sad at the moment, wishing we could celebrate it like we did last year. He is sleeping right now and has been feeling pretty icky lately.
He finished his second round of chemo on Saturday and really, he did pretty well. I think he tolerated it much better then last time. He is definitely feeling it now though. We went in Tuesday afternoon and stayed 4 nights. It was a longer stay because it took a long time to hydrate him enough to start the chemo. I will say it was a tougher round for me but not because of Ashton. They put us in the ONLY shared room on the ward. We were put with a teenage girl and her lunatic father..it was a nightmare. I won't go into much about it but they did end up moving out of the room and were replaced by a MUCH nicer family. I'm keeping my fingers crossed that we don't have the same type of situation we did this last time again. Things like that just shouldn't happen at Stanford, and believe me, I complained and filed a report.

Ashton had another hearing test this morning and the news isn't what I wanted to hear. He has some slight hearing loss. It is only of high frequency sounds so it won't affect his speech, but it is sort of sad to hear this news, especially on his birthday. I figured it would eventually happen but wasn't prepared to hear it today. They will be on top of this now and it could stay the same or it could get worse...we won't know until after his next chemo. It isn't reversible. We go up there again tomorrow for his 2nd syringe of Vincristine, the one chemo given on day 1 and day 7 of the cycle. Thursday he will be getting another blood draw and the dr. is thinking he will most likely need a red transfusion. Lets just all keep our fingers crossed that Ashton stays healthy and doesn't develop a fever while he is neutropenic, which would mean another hospital stay for us.

Happy Birthday Ashton, next year will be much better.

Home and not feeling well.

Ashton got discharged Tuesday the 31st. We were in the hospital almost 2 weeks! During our stay his nausea was pretty much taken care of...he basically felt well most of the time. Since we have been home he has thrown up his NG tube twice, on Wednesday and Thursday. Wednesday I just went to Dominican, brought our own tube, and he was in and out in 20 minutes max. It still is a horribly uncomfortable thing for him to go through, but he did really well. Yesterday, on the other hand, was a nightmare. He woke feeling pretty bad but the feeling wore off by the time we had to go up to Stanford for a blood draw and hearing test--his hearing was perfect again and his labs were great...his white count is way up so we don't have to give him his daily shot anymore, for now. But, on the way home he threw up in the car. His tube came out and was gagging and gagging him, it was awlful. Good thing I was sitting in the back with him and caught most of it in his trusty "bucket". But, the tube was just hanging there and I didn't have anything sharp to cut it with. His eyes were bugging out and he was basically panicking as we were driving down Hwy 280. I made the decision to just put him through more discomfort and gently pull the tube out through his nose. I had to do this so slowly though to be careful not to hurt him, but of course the whole time he is thinking he is choking. Its terrible. But I got it out and then he was fine. We decided to just drive directly to Dominican again because he was in and out in such a short time the day before. Unfortunately, this wasn't the case last night. We waited 2 1/2 hours in the waiting room for a procedure that takes about 15 seconds. Once we got back the wait was another half hour to figure the tube out. They didn't have the right type of tube so Pat had to drive home and get one. It was a nightmare. Ashton went all that time with out his feeds, without his medication, and he should have been asleep in bed. Not to mention he sat in a waiting room full of sick people, ICK! I talked to his Dr. today and she told me I can bump up his medication to every four hours, and that on Monday we will be taught how to put the tube in ourselves. At this point, his nausea is the thing that is bugging him the most. Hopefully the fact that we can give him his medicine more frequently will be a great thing and that darn tube can stay in!! If his platelet counts rise by Monday he will be starting chemo again late next week. I will update again when I can...

12 days...and still counting...

Well, we are still in the hospital. I can't believe we have been here 12 days now. This is the longest Ashton has had to be admitted. Even when he had brain surgery, we were out in 9 days.
It all started with the fever on the 17th, they gave him antibiotics and his fever went away. Of course his fever happened on the EXACT day his white counts dropped so we were told it could be a while before they came back up. Things were going good until he got another fever last week and they had to start another antibiotic. That fever is gone now too, thank goodness. We don't know exactly what they were caused from. When his white cells are down, any bacteria entering his body can potentially cause an infection, so its hard to know if he did have an infection or if it was just viral. Whatever it was, the fevers were keeping his white counts low so that added to reason for our long hospital stay.

I am happy to say that his white counts are starting to rise, slowly but surely. The dr. this morning said we could possibly go home tomorrow if they continue to go up. I'm thrilled!
Of course he will only have about a week break before starting chemo again....I'm hoping this time there are no fevers and the month can go a little more smoothly. I am hearing so many hopeful stories and definitely see the light at the end of the tunnel. 5 months to go!!

Keep Ashton in your thoughts and prayers please as he gets ready for round 2 of chemo.
This stuff he is getting is so potent. My mom asked the dr. the other day why we see other kids
walking around with energy and smiles as they are getting their chemo. The dr. said the stuff Ashton is getting (Cisplatin) is some pretty yucky and strong stuff. The other children we see are getting something different.

Its kinda weird to say this, but I am going to miss this place a little. Here I know that Ashton is getting taken care of, is monitored, and they give him all of his feeds and medications! Once we leave, its all up to me and Pat. I feel very safe here. The only thing that scared me a was a few nights ago at around midnight, I heard a stampede of footsteps running down the hall. Then I heard nurses frantically giving directions to some other people, probably doctors who were arriving. I knew that there was a major emergency in one of the rooms down the hall. I didn't think something like that could happen here, even though there are emergency medications printed out and taped above Ashton's bed, I thought they are there by law, not because we may need them. Shortly after this all happend, our nurse came in and I asked what had happened. She said that there was a "very sick" little girl down the hall, who had been very sick for a long time and she had lost her airway and they needed to intibate(sp?) her. They ended up moving her to another floor, I'm assuming the PICU. I hope she is doing ok. All of these little sweet souls in this ward just don't deserve this, no one does.

Back so soon??

Ashton was released last Friday and did ok...well sorta. After the whole traumatizing experience of having the NG tube placed, he threw it up Saturday and we had to go into Dominican and do it all over again. And If that wasn't enough, he threw it up again Sunday night and had to get ANOTHER one placed Monday. Having the tube pushed down through his nose and into his stomach is so extremely uncomfortable for him, he screams the whole time, but once its in place he feels much better. He had a regular clinic check up Monday, he also had his scheduled syringe of Chemo. The blood test results on Monday came back showing that he needed a blood transfusion, so our short visit turned into an extra long one. We were in the hospital from 11-7:30. But he bounced back and felt much better so it was a good thing. His vomiting has been under control since we worked out a new medication plan....really the only times he has been sick have been the times he vomited up his tube, so just twice.

Now to the good part.....we are back in the hospital for another possible long stay. After I got back from Cassidy's softball practice last night, I felt Ashton's forehead and he was HOT. His fever was 102.2...Pat called the doctor and we were told to come in immediately. I had to come alone because Pat needed to stay with the other kids, but my aunt and uncle met me at the ER here and helped out. He had his blood drawn, x-rays taken, nose swabbed, all these wonderful fun things. I forgot to mention that Ashton has had a runny nose and a cough for a couple of days now....it just got worse last night and that's when he spiked the fever. I knew coming in that any fever he would get means he would be admitted for at least 2 days. In talking to his dr. on the drive up, she told me that if his white count was ok, which it was fine on Monday, and he didn't test positive for a bacteria infection, then he should be ok to go home. Turned out though, and I was totally surprised, but his white cell count was pretty much zero. Definite admission.
By the time we got these results, it was midnight and Ashton was sleeping. They said it would be about an hour and then we would be transferred over to the oncology unit. We didn't get into our room until 3am. I got 3 hours of sleep. Good thing is Ashton is sleeping now and his fever is a little lower due to Tylenol. We cant go home until he is 24 hours without fever and tests show his white cell count is going up. They told us it could be 2 days to a week and a half. I am so disappointed this happened so soon after chemo. I thought his counts would drop next week, that's what they were predicting. They think since he came off Radiation so recently that it contributed to his low counts. So in the last few days he has had a red cell transfusion, a platelet transfusion, and is now hospitalized for Neutropenia (sp?) which means no white cells to fight off illness. He is on antibiotics and we are hoping the fever is just due to the cold he seems to have caught from me. Please think of Ashton and keep your fingers crossed that he will get better soon and we can go home.....for at least a few days until the next round.

Doing much better.

I wanted to update everyone and let you know that Ashton is doing so much better. The last two days have been so different from the first day where he just slept and was quiet and sick.
Yesterday he played and even went for a walk through the halls. He woke up great this morning, happy and his usual self, he just wants to go home. Its looking like we will be this afternoon.......hate to say this, but it all depends on the poop. Unfortunately, this morning, Ashton got another feeding tube placed and it was pretty horrible for him. This was the first time he has been awake while getting one put in. During Radiation he was always put under and thats when they would place a new tube when needed. They gave him a bit of Verced to calm him down, but it really didn't help when they actually put the tube down his nose. It took him a good hour to calm down afterward. He kept gagging and saying he was going to throw up, but it is just the feeling of having the tube in his throat that makes him feel that way. So they now have something called "go lightly" going through his feeding tube. It is a laxative that they give people undergoing a colonoscopy (sp?) Once he goes we get to go home! Its been 6 days, poor guy. I wanted everyone to know that Ashton is doing really well now and I hope he does this great the next 5 times we do this.

Tomorrow we will be receiving a supply of Neupogen shots and I will have to give him one a day until his blood counts go up. I dread doing that...of course he hates it. But, it is a good thing because that means his white cell count doesn't stay down for too long.

I will let everyone know how things are going once we get home. We were told he may not get the sicky feelings until a week after chemo so next week may be a yucky one.
Keep your fingers crossed for us!

The effects.

Let me start by saying that the chemo Ashton is receiving is very potent stuff. He got admitted Tuesday at 3pm and started chemo at about 7:20. They first had to hydrate him enough to be able to tolerate chemo. He then got a push (syringe) of Vincristine--which is very constipating--but it is the one chemo he has had before. Immediately after that he started a 6 hour dose of Cisplatin which is the scary one. Its side effects are nausea and hearing loss...among others. That ended around 1:30 in the morning. Right after that they gave him more fluids at a faster rate to flush the drugs out of his system because they can cause kidney damage. It was nice that he slept through all of that but the next day, Wednesday, you could really tell he was feeling the effects. He slept almost the whole day and when he was awake he would just lay in bed watching T.V. He hardly spoke at all. He did wake up for a couple of hours around 6 last night and watched a few episodes of John and Kate plus 8. I think that kept his interest because the kids are all his age. Anyway at 7:20 he started another chemo called Cyclophosphamide. This one was just given over an one hour time span. This one also has to be flushed out because it can cause bladder irritation. He threw up for the first time after receiving that one. I could tell he was feeling nauseated for a while before. There was a tiny amount of blood in it which worried me, but the nurses said it was OK. So, he receives the Cyclophosphamide again tonight and we stay over again, which wasn't expected, but it's all because of when he started on Tuesday. I guess we should be coming home tomorrow but Ashton needs to be eating and holding his food down before they will let him go. I forgot to mention that he has not had anything to eat since we have been here. That will make it a bit hard to see if he can hold food down....I'm thinking they will have to put the feeding tube back in him which will be a huge ordeal because they won't put him to sleep to do it. I am just dreading it. Also, and this might be a little too much information, but Ashton hasn't pooped in 5 days. This is not a good thing. We are trying to give him laxatives but since he isn't drinking much its a bit of a challenge. They don't want him to get constipated and strain because that could cause a tear in which bacteria could enter his body. That is the biggest threat to him, his own bacteria, not colds or sickness from others.

The latest issue going on is his sodium is on the low side. The are giving him some now in his I.V. The worry with sodium is that if it gets dangerously low it can cause him to have a seizure. They are taking care of that so I'm trying not to worry about it.

Basically this stuff is making my little guy feel pretty icky. He is quietly watching spongebob right now and is definitely not his usual self. I have tried to explain to him that the medicine he is getting is making him feel this way but the medicine will make him better pretty soon. I wonder how he processes that information, it must be so confusing. It still hits me hard sometimes that we are even going through this and that this is my life. Pat and I were sitting here yesterday just not believing that we are at Stanford right now with Ashton because he is getting Chemotherapy and has cancer. It still sometimes comes as a shock.

Carter and Cassidy will be coming to visit tonight and I'm hoping that will perk Ashton up and maybe he will smile for a tiny while. Please continue to think of him and I will try to update when I can.

1st round.

Ashton is starting his first round of chemo tomorrow. We don't know the exact time he is being
admitted, we have to wait for a phone call letting us know when there is a bed available. It could be morning or evening. He, and I, will stay two nights and three days. He gets a 6 hour course of Cisplatin, this is the scary chemo that causes hearing loss. He will also get a syringe push of Vincristine, which he has had before with radiation. There is also another chemo but that one is shorter and I can't remember the name :) After the 6 hour chemo he will get a 24 hour flush of saline to rid his body of the medication. He will also be evaluated to see how he does. We will not be able to go home if he is sick and can't keep foods down or if he gets a fever, which we were told is highly unlikely. They did tell me that his reaction will be the worst these first few rounds, so of course I'm worried about that. We pretty much know these next 6 months will be rocky and we will be in the hospital more then we expected, for fevers, transfusions, blood draws, etc. There is absolutely no set schedule...the 28 day cycles are not going to be. Everything depends on how Ashton is doing and if he is healthy enough to go another round, but that doesn't compromise his cure at all. I will try and post more these next few days...I will have my laptop in the hospital. We got to take a peek at where we will be staying and its really nice. It is a brand new ward and every room is private with our own bathroom, which let me tell you is a great thing! Ashton is also not confined to his room. He can walk about with his IV and play in the playrooms, but I'm wondering if that will even happen. He is still really sleepy from the radiation. Its good to know we have the option though. Wish him luck!

The downs.

The last few days, Ashton has been suffering from what I call "the downs".
He just wants to lay in bed...doesn't want to walk anywhere, he's looking pretty
pale, and he isn't wanting to eat much at all. Tonight he went to bed a little after 5pm
and threw up right before. Of course I called the dr. and she said what he is doing is
completely normal for what he has been through. He is still feeling the effects of the
radiation and that combined with his low red counts is making him have no energy.
The doctor thinks he can go the weekend without a transfusion, we have an appt.
Monday. She seems to think he may not even need one on Monday, but I hope he
gets one. It would be nice to see him perk up a bit. I really wanted to take him to the park
tomorrow but its looking like we will spend the day indoors. This will all wear off eventually....probably right in time for him to start chemo. Then that will knock him down again.
The dr. told me tonight on the phone that its going to be a rough 6 months. I can't even imagine.

Ashton said the sweetest thing to me yesterday. I was complaining of a stomach ache and he
patted my back and said "its ok mommy, I'll take care of you." I thought that was just adorable and wanted to share it. With all he is going through and how bad he is feeling, he thought of me and wanted me to be alright. He has such a sweet heart.

The visit today.

We went up to Stanford today for Ashton's regular check up. He is doing wonderfully.
We got to talk about what these tests all mean for Ashton and his prognosis. His Dr.s informed us that this is the best place we can be in at this time.....not everyone has a clear MRI at this point, so Ashton is very lucky. His prognosis is better now...instead of it being 60-75%, it is more at the 75% range...which is excellent, I think. Those are just numbers anyway. His doctors all have very high hopes for him and seeing them and how positive they are just helps me feel so much better. I will still remain apprehensive....I will forever I think. This is not over by any means. We still have a long 6 month road of chemo to travel and then after that, who knows. Hopefully that will be the end but he will have to have MRI's every 3 months and I know those will be times of high anxiety. I know from talking to other people and from talking to the dr.s today that anxiety will be a big part of my life once those MRI's roll around. It is just so wonderful to get some good news, finally. In the beginning it seemed like every day there was more bad stuff to hear. Now I can finally breath a huge sigh of relief and know that for now, Ashton is OK.

I asked if I can officially say that Ashton is cancer free. The dr. told me that I can say there isn't any cancer that is detectable by them. She said "is there a cancer cell left floating around somewhere? We just don't know. That is why we do the chemo." That's fine with me!

I also asked about Ashton's left eye. His left side is still very weak, although it gets stronger each day, and his left eye is still turned in a bit. She said it should continue to get better but it might not ever get back to normal. She also said he may have some double vision or have some blurry spots. He hasn't complained about not seeing things clearly and I sure hope that isn't the case. But, if that's all we have to worry about in the future, again, that's alright with me.

We start Chemo March 1oth. Ashton (and I) will be admitted for a 2 night stay and leave on the 3rd day of his 28 day cycle. On day 8 we have to come in for him to get just a small syringe of chemo, which takes a few seconds. After that, its just clinic visits each week until we start all over again with the next 28 day cycle. Each month will be the same....2 night say over and a little chemo on day 8. This will go on until about September. Please continue to think of Ashton and pray that he gets through this chemo alright. Hearing loss will be a big side effect so please keep those positive vibes coming...we appreciate it all!

3 for 3.

Ok, the doctor just called. The neuro-pathologist read the MRI and there is absolutely nothing there!! No tumors!! No residual.....nothing!! I am just amazed and so, so happy. We are going out to Stanford this afternoon to talk about what this all means, but the dr. informed us it is very, very good. We have kicked this cancers butt!! Now, we have to make sure it stays away.
Keep those prayers and positive thoughts going for us...I truly believe they have had something to do with this wonderful outcome.
Thank you all!!!!

The MRI.

Today Ashton had his MRI. The day was kinda crazy, we were stuck waiting to go in an extra 2 hours and Ashton was hungry. He did great though....after waking up was a different story. He cried and complained most of the way home. I think it was because he was asleep for so long, almost 2 hours. I had no idea MRI's could take so long!

A few minutes ago Ashtons dr. called with the results of what she could see. She said we still have to wait for the final word from the pathologist and that would be Monday morning, but,
from what she could see, there is NO SIGN OF CANCER LEFT in the brain and spine!!!!!!!!
I am in shock. This is just the best news we can get. Even if the pathologist see's something, its going to be so small. All the lesions that were through-out his brain and spine are not visible at all.

We are just over-joyed. Thats 3 for 3!! Each test this week has given us the results we have been so longing for. I will definitely update everyone on Monday when I find out the official word! :)

2 out of 3.

This week has been a busy one...busy and full of stress. On Monday Ashton had an audiogram, a test to check if his hearing was affected at all from the radiation. We got the results of that immediately and his hearing was completely perfect. That was wonderful news to us because his last test was a little iffy, plus I was worried all those radiation beams were doing some sort of damage. He will continue to have the audiograms every month during his chemo because there is a chemo drug that he will be receiving that causes hearing loss.

Tuesday morning Ashton went in for a lumbar puncture. They pull spinal fluid to check for cancer cells. The very first LP he had was way back before radiation, the day he got his port put in. The result of that test was what we expected...there were cancer cells present and there were A LOT. So, of course I have been very nervous about finding out the results of Tuesdays test. The dr. told me this morning that we may not know the results until Monday, then we would also receive the results of the MRI he is having tomorrow morning. The wait has been so hard, manageable but hard. I have been trying to stay optimistic and telling myself I won't worry until I find out there is reason to. Tuesday night, Ashton's dr told me she was really hoping the test this time will be clear. She said she wouldn't be surprised though if there were some cells left because there were so many in the first place. She also said it wouldn't be the end of the world if there were still cells present, he will still be getting the chemo and that should take care of any lingering ones.

S0, today as I was having a nice lunch at home with a friend, the dr. called. I figured she was calling about some scheduling issues for tomorrow. I had just had a conversation with her a couple of hours earlier and that was when she told me we may not have the results until Monday. She mentioned that she would be checking with pathology this afternoon, but if they weren't back yet then they wouldn't be until Monday. She called with great news....there were NO cancer cells left!!! I couldn't believe it....I still can't. I feel like we are the luckiest people in the world right now. All the treatment he has been having so far has been working! HOORAY!

Now I feel so hopeful about tomorrow's MRI. Please continue to keep Ashton in your thoughts and prayers...we are so grateful! :)

Enjoying the break.

Today was the first day since I can remember that Ashton hasn't thrown up. I'm really hoping this will stick. It is so dang hard to see him sick every morning, especially since that was the problem he had in the first place which led us to this horrible nightmare. Of course I have been worried sick that the vomiting may be a sign that the tumor is returning but the dr.s have reassured me it is completely normal. He is still feeling the effects of radiation and the last doses he received were right on the tumor site so that is one of the main reasons he will feel icky. They also told me, and I'm sorry if I mentioned this before already, but they told us that Ashton will always be a person who throws up easily. Due to the tumor and surgery, he will vomit much more then the normal person does. If my other kids get the stomach flu and throw up a few times, Ashton will get it and vomit over and over. I really feel sad about that because I've told him that his sick feelings will go away soon. Shortly after surgery I told him that it was the bump in his head making him sick and the dr. took it out so he wont throw up anymore. Now I don't know what to say.

It feels so incredibly good to sort of be back to normal day to day life. Of course we have clinic visits once a week, and we had a small scare this weekend. Ashton caught a bug from my other kids and got a fever. We had to take him to the ER at Stanford, which wasn't a very fun experience. They had to poke him a couple of times to test for bacteria in the blood, which he didn't have, of course. They also had to check his white blood cell count to make sure he was able to fight off this virus, and he was ok so we didn't have to be admitted. It is just such a bummer to have to be going through all of this. I have been having some "why him" feelings lately and been feeling pretty sad. I just want this to be all behind us so badly.

Next week is a biggie. On Monday Ashton has a hearing test, on Tuesday he has a lumbar puncture to check his spinal fluid for cancer cells, and Friday is the MRI which will tell us if the tumors are gone. I am scared to death. He will have to be put under for the lumbar puncture and the MRI....poor little guy. I am desperately hoping that his tests will be all clear. Thats what the dr.s really want to see but, we were told last Monday that if there is still cancer in him, they will use that as a baseline for treatment. Meaning, if he isn't all clear, it can still be taken care of with the chemo. He starts his first cycle of chemo on March 10th and he will stay in the hospital for 2 days and 2 nights. Of course I will be staying with him.

Other then all the stressing I am doing, I'm really enjoying this time we have together. Cassidy has just started softball and I can't wait for games to start and for Ashton to be able to come and watch her. I have no idea what the chemo will do to him regarding side effects and such. I do hope he will feel well enough most of the time to enjoy the little things. Please send all the postive thoughts you all can for Ashton to have a clean scan and LP. I will update this blog as soon as we know the results.

Thank you just isn't enough.

I am sitting here tonight, the night after Ashton's skate night, and am still in awe about how the night went. I really couldn't have asked for it to turn out any better. There were so many people I didn't get a chance to talk to and thank...I'm sorry for that. It was a crazy, crazy, night...in a good way of course. It seemed to go by in a blur and I really wish I had the whole thing from start to finish on video so I could watch it all and catch all the people and things I missed. I hardly could sleep last night. My mind just kept going over and over everything....it still all seems surreal. The people I have around me, who set this whole thing up, you should all be very proud. I know you were really stressed, hoping things would go well. Well, you did it! You all did it with grace and class, and things went so smoothly....It couldn't have been more perfect. A HUGE thank you to you all, from the bottom of my heart.

To the people who came, you have all given me a new found hope. I never really knew how wonderful this community was until now. I knew it was good, knew there are a lot of great people here, but this just blew me away. I will forever cherish all the notes that were written, cards, photos, everything and I can't wait for Ashton to get big enough to really understand how enormous this all was and to tell him it was all for him.

Ashton made it almost the whole night! Hooray! I hardly saw him much at all, he stuck with Pat most of the time, but when I did see him he seemed to really be enjoying himself. I had told him ahead of time that this was a big party just for him and that he may have a lot of people wanting to say hi. I told him to just wave if he felt shy and I think that worked out well. The cutest was how all the kids came up to him wanting to talk. I think he got a real kick out of that.

I really didn't realize how large this would all be. It wasn't until I found out that both the elementary schools sent notices home with everyone, and then the Sentinel did the story. At that point I thought it could go REALLY well. But, a couple of hours before it was to start, I got a call from KION news....they wanted to do a phone interview and send a camera man out to do a small story about us. The did end up interviewing Molly, who did SUCH a great job. If anyone wants to check it out go here.......KION - Monterey, Salinas, Santa Cruz - News Weather-Home
There is a short video and the written story is further down the page. That's when I started to believe that this was really huge. How great, and all for my little guy.

Today, Ashton has been progressing more. He is walking almost everywhere now. He holds on to walls and couches/tables, when possible, but other then that he is on his own. Also, he threw up his feeding tube early this morning which was a really great thing in my opinion. The dr.s didn't want it to come out unless he was eating, but he didn't want to eat because it was there. So today we got the chance to see what would happen, would he eat or not. Well, HE DID!
He had two slices of pizza at a superbowl party we attended and drank a lot of fluid by mouth.
We have to go to LPCH tomorrow for a check up and blood draw and I can't wait to tell his dr.s the progress he made. I'm feeling really confident that he doesn't need a new tube placed. He feels so good without it too. Just another little step forward for my Ashton, who now I am starting to see glimpses of here and there, the Ashton from before, who I had posted a while ago that I was forgetting...he's making his way back. Slowly, but he's making his way back.

Sentinel update.

Just checked the paper and Ashton's story isn't in there! Bummer!
Hopefully it will be in tomorrows edition....
:)

He's done!

Today was the last day of Radiation for Ashton..hooray! It was a great day! Everything went really smoothly and we were home by 12:30. Ashton got a couple of gifts from the radiation gang and I posted a bunch of photos on my facebook page. It was just a really happy day. Soon after we arrived home, we had to leave again to go to the park. Ashton has been loving to go there these last few days and it is great to see him play with his good buddies again. I had another reason to go there today though. A reporter from the Santa Cruz Sentinel called yesterday and we arranged to meet up at the park for an interview and photos. It was all really interesting and there will be a story in tomorrow's (Friday's) paper. I can't wait...the reporter was really sweet. I noticed later that she joined Ashton's cause on Facebook, I thought that was pretty cool. More news...Ashton took a few nice steady steps today on top of the play structure at the park. You can tell he is really trying hard to find his balance and take those few steps...the great thing is how proud he is when he does it. He says "look mommy" and has his little sly smile the whole time. I am just so amazed at his progress from just a few days ago. I know he will continue to excel during this break and I am so relieved to know that the hard part is behind us. Tomorrow, I plan to sleep in a bit and gear up for our big night on Saturday. I hear there are some really nice raffle prizes and auction items that have been donated. Can't wait to see everyone there!

Two days to go!

Well gang, just two days of radiation to go! Ashton did his final chemo this morning so we said goodbye to all of our wonderful nurses in the day hospital. Nurse Mary, nurse Melissa, and nurse Heather...you guys are so great..thank you for being so sweet and kind to Ashton. We will miss you these next 6 weeks but I'm sure we'll pop in to say hello at some point. And we will be back for the rounds of chemo to come.

Ashton is doing so great...these last few days he has wanted to go to the park. He rode his trike all over the place and is just thrilled with himself for being able to do that. I feel like summer vacation is just a couple of days away. That's how anxious I am to get to our break. It is so wonderful to know I can maybe take a shower in the morning again and drive the kids to school...just get back a bit of my old "normal" life. I have to say though, these last weeks haven't really been as bad as I thought. Everything went better then expected. I really thought Ashton would get sick with something and have to be hospitalized or just get a fever, but he has been just as healthy as can be. He does have his bouts of vomiting though and to tell you the truth he has been doing it more lately. The last two mornings he has thrown up as soon as he wakes, which makes me panic a bit because that is what his main symptom was before we knew he had a tumor. I actually talked to his dr. today because he threw up twice before we left and it just didn't seem right. She reassured me that it just isn't possible that the tumor has grown back and causing him to be sick. She did mention something about brain swelling, and that got me worried, but told me most likely it is because his anti-nausea meds have worn off. She called me tonight just to let me know that there is no way he has any swelling, she had been under the impression that he had a shunt and sometimes they can malfunction, but that isn't the case. So, I feel better. I'm so lucky to have such a great dr. to communicate with! :) She will be seeing Ashton tomorrow for a check up just to be on the safe side, but I think he is going to be OK.

After Thursday it will be pretty much watch and wait in regards to getting the feeding tube removed. They want him eating before they take it out and unfortunately Ashton doesn't want to eat because it is in. I'm hoping he gets a big enough appetite and won't care that its there. He really will feel much better once its out and so will I.

We are gearing up for our little man's big night this Saturday! (http://www.ashtonscircleofhope.net) There have been a lot of great people working hard to make this event possible and I want you all to know I really appreciate everything! I feel like I sound like a broken record...I say it so much, but I don't know what else to say! Words just aren't enough. I am so looking forward to seeing friends from near and far...I feel like its prom night or something! How silly!


Ashton has seen his banner hanging out in front of the sport center and at first he wouldn't look at it. Now he looks and talks and asks when his skate party is....he is getting excited too! He's also going to sleep later each night so its looking more and more like he will be there, hooray!

Another thing...Ashton's cause on facebook has 180 members now! That just blows me away....

So, 2 days to go, then a really big party and then 6 whole weeks of relaxing, playing, laughing, hopefully some walking, and then some running! The way things are going for Ashton now....anything is possible.