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.