News About Ashton and His Family

2 YEARS!

2010-11-12T08:56:00.000-08:00

Gosh, its been forever since I updated. So sorry! I feel like I update so much on Facebook and not sure how many people read this. Anyway, today it is 2 years since Ashton almost passed away and his life was saved! He recently had another MRI and that came back all clear. He is doing wonderful! He started preschool in September and is just thriving. He continues his physical therapy once a week and all the play he does at school helps him tons too. So, this is just a quick update, life is so busy and thats a good thing! All is well in the Gillin home.
Dori

This just in!

2010-07-26T16:40:00.000-07:00

Ashton's MRI came back all clear!! Yea! Now we can enjoy the rest of our summer without worry. At least until October, when the next one rolls around.

It's that time again.

2010-07-14T22:05:00.000-07:00

OK, time for all the Positive thoughts and prayers. Ashton's next MRI is next Wednesday at 1pm. I know he is going to be just fine but I still have butterflies. Please keep him in your thoughts...thank you.

A much needed update!

2010-06-13T21:32:00.000-07:00

It has been so long since I've updated! Sorry for the huge ammount of time gone by. Ashton is doing so incredibly well and we are so excited for summer. He has been eating little bits here and there. He mostly likes sweet things but lately he has also tried taco meat and spanish rice. I think because these things have a lot of flavor, he likes them. He is still getting his regular formula feeds through the G tube, but its looking like it won't be for much longer. He sure is taking his time though, this eating stuff has definitely been on his own terms and he is taking baby steps with it. Whatever it takes though!

Ashton was given the opportunity to do a wish through the make a wish foundation. So, in 11 days, we're going to Disneyland!! We are so excited! This will be the first time we have flown down south to go to DL and it will be all of the kids first time in an airplane. Its going to be quite the adventure :)

Ashton is still doing Physical Therapy once a week and he is getting stronger and stronger. He still has a long way to go, but today we took him to "The white church" that he loves so much--Holy Cross, in Santa Cruz--and he was able to "run", more like trot, on the grass. He had been wanting to do that for so long, it was great to see him and how happy it made him. He is also loving riding on his trike and man is he fast. Thats one of his favorite things to do as well. He just goes and goes!

I can't remember if I mentioned this before, but we have decided to put Ashton in Pre-school next fall instead of Kindergarten. I feel he needs to make up for a bunch of lost time and I really want him to have the very best start going into school. He will be going to Baymonte Preschool, which is where his sister went, and I know he will have a great beginning to his many, many, school years.

For now though, we are going to remain busy just enjoying the summertime. We missed the whole season last year because most of our days were spent in the hospital. We have been playing outside, playing again with our weekly playgroup at the park, and Ashton has even started swimming in the pool again. This was a biggie because he was very afraid to get back in there, but thanks to our new neighbors and their little boy, Ashton took to it right away. It helps when you have a friend to swim with :) I feel like things are going so well sometimes that it just can't possibly be true. I have this dread that at any moment it can all be swept away again. I know this is normal anxiety, but that doesn't make it any easier. I get so worried anytime he throws up, which does still happen, just not very often. I worry its the tumor growing back, but then I remember that he is very sensitive to things, like his feeds, or when we try to stop the anti-nausea meds, and that it will take some time for him to adjust. His next MRI is scheduled for the end of July, I think the 27th but I'm not sure. I will update again before then and let everyone know.
Happy summer and I will let you know how the Make a Wish trip goes!

Ashton's 5th birthday

2010-04-14T12:06:00.000-07:00

Well, today my little guys turns 5! This is such a happy day. He is feeling and doing great. He has a big birthday party this weekend and we have hired a magician who performed for the kids up at LPCH. Its going to be awesome! Last week, we went out one evening for a family photo shoot. A couple of mom's that I know, one who is also a cancer mom, had offered to do this at no charge and I just couldn't resist! This turned out to be the perfect time, Ashton's b-day and his end of chemotherapy treatment. I wanted to share a slide show one of the mom's made. She just sent it today and I can't get over how much I love it.

http://michelleriddlephoto.com/gillin/

When you watch this, make sure you turn the volume up to hear the music.
It truly is special.

Great news!

2010-03-30T16:25:00.000-07:00

I wanted to let everyone know, who isn't on facebook, that Ashton's MRI was all clear! We are so happy!

Please continue to pray for our friend Jacob Grillo. He is having an emergency MRI of his spine today and will undergo brain surgery on Friday to get the tumor they just found out.

Thank you!

MRI tomorrow

2010-03-25T18:22:00.000-07:00

Ok everyone.....PT's and prayers are needed. Ashton will be having his MRI tomorrow at 3pm. I have been feeling so great about it. He has been doing so good and hasn't given us any reason to worry, but about an hour ago, we heard some terrible news which has pretty much slapped me in the face and made me realize to NEVER let my guard down.

When Ashton was first diagnosed, when he was still in the ICU after surgery, we were introduced to a wonderful family who happened to be waiting for their baby boy to finish his follow up MRI. They were the first people we talked to who had a child with a brain tumor and I felt the need to latch onto them...they looked so calm because they had already been through the worst, Jacob was tumor free and doing great. He had a different type of tumor and was diagnosed about a year before Ashton. A couple of times our boys would have their MRI on the same day so we would have a chance to catch up. But for some reason, our schedules have been slightly off and we have missed each other. Well, Jacob's MRI was today and we just heard that his tumor is back. There were no signs....we don't know yet what their next step is but let me tell you, this family is the greatest. They helped us so much. Their names are John and Sandy Grillo and Jacob is their son. PLEASE pray and send positive thoughts.

You never know what tomorrow may bring......

Tube free!

2010-03-08T12:39:00.000-08:00

I'm sorry for taking so long to update. Ashton had his surgery 2 weeks ago and is doing great! I am happy to say he is officially tube free! The surgery went well, but I have to say, I wasn't that prepared for afterward. As soon as Ashton woke up he was in pain. He didn't even have time to notice or be excited about the tube being out of his nose because now he had a big strange button sticking out of his belly! It hurt him a lot. We knew we were going to stay the night in the hospital, but it turned out he needed to stay 2 nights. This hospital visit was very disappointing for me and my whole family. I will try and start at the beginning...

As soon as he woke from the procedure he was in pain. They gave him something for it while he was under, but he needed more very quickly. It took 2 full hours before the orders got written correctly to give him the medication. There was some mix up with what type to give, I.V. or orally, because they didn't want any thing in his stomache. There was just a big lack of communication and I didn't feel that our nurse was helping. It was VERY hard to watch Ashton hurting. I thought that after all he had been through this past year, radiation, Chemo, and brain surgery, that it was ridiculous he should suffer from such a simple procedure in comparison. But he did, and I filed a complaint. Also, I was under the impression he would be getting any other medications he takes at home while he was there. He mainly just takes Zofran for Nausea still. We are trying to wean him off because he still gets sick if we take it away completely. Well, our nurse's opinion was that if he doesn't have any food in his stomach then he didn't need the Zofran. I had to explain that the nausea comes from his brain surgery and also from cutting him off cold turkey. Pat and I were feeling that we should have brought our own stuff from home, it was so difficult to get it! So needless to say, I was frustrated. Also, I had no idea Ashton would vomit up pretty much everything he took in for two days! I guess this doesn't happen to every one. And he would vomit blood, very scary! At one point I though to myself, what did we do??? I wished we had just left the NG tube in his nose, this was so awlful. But as the days went on and we were released to come home, it got better. I love it now and he loves it too! When he isn't eating, he doesn't have any tubes dangling and getting in the way. It is very nice! He still isn't interested in eating on his own, but I'm hopeful it won't be long. He is wanting food in front of him more and more. He asks for things and has even licked a graham cracker and got some crumbs in his mouth and hasn't spit them out. That is huge!

The other procedure he had done was to remove his port. This was the central line where all of his chemo and other medications were given. It used to stick out of his chest so much that his scar from the surgery had strectched and was quite big. The doctors fixed that when they took it out and now he has a nice thin scar. This was a huge milestone for us, one we couldn't wait for. It was great! We also got rid of a bunch of his left over medication and supplies. The nursing staff will sometimes travel to South America to treat children and the medication we gave them will be used over there. We also got rid of all of the home health care nursing supplies....we gave them back to the nurse who cared for Ashton and she will use them and was very grateful for them. Getting this stuff out of the house was a big step. I was a little unsure because I worry about the big "what if" and will we need them again some day? But, Its healthier for me to think we won't. And deep down, that's what I believe.

So, next up is the MRI...ugh. It is scheduled for Friday the 26th. I will let everyone know how that goes.

Surgery Friday!

2010-02-16T16:50:00.000-08:00

Ashton had his upper G.I. done this morning and it went really well. He did such a good job and it only took a few minutes to get all the info. they needed. They could see that there were no problems going on with his system, everything looked great. So, after he had the GI, we had a bunch of time to kill before we had a short exam with his doctor. The exam wasn't a "planned" one, I had some concerns that I wanted her to check, and everything was fine. But before we had that checkup, we got to go to the playroom and see some people that we haven't seen in a long time. It felt good to see them, like seeing old friends. I get a sense of comfort when I walk in the hospital.....Its strange because I am so glad to not be spending most of my time there anymore, but at the same time, there are memories and people who understand which makes it feel welcoming.

So, during Ashton's exam with the doctor, she let us know that Ashton could have his G surgery this Friday! I'm so happy! Besides the G tube, he will be getting his port removed. The only thing that wont happen is the Botox to the eye muscle. His eye doctor is out of town so he will just have that done with the next MRI, which is already scheduled for March 22nd. Ashton will need to stay overnight in the hospital for at least one night to make sure his new tube works well and all is ok. I'm so excited for these procedures. I have a feeling that this will help Ashton to want to eat on his own. Keep him in your thoughts everyone! Thank you!

The latest

2010-02-02T10:50:00.000-08:00

Wow, it has been quite a while since I have updated! Not too much has been going on, just living a somewhat normal day to day life. Ashton continues to have Physical therapy and is doing so great! Just last Thursday he went up and down the stairs by himself, which is HUGE! Its amazing how far he has come in just the last few months.

We are waiting to hear some dates of up-coming procedures. First, the dr.s want him to have an upper GI, just to rule out any other reasons he may not want to eat...reasons besides the chemo. Once that is all taken care of, we are hoping to have his NG tube placed into his stomach, which is just called a G tube. This way he won't have the tube in his nose bothering him. The G tube is more permanent, but also temporary. While he is under he will actually have 3 procedures done. 1, the G tube. 2, have his port removed, yea!. And 3, get botox on the stronger muscle in his left eye. We are so looking forward to these procedures! We are planning to start him in preschool in April, with a bunch of visits in March, and we would love to have all of this completed by then. These are big steps forward for us!

Ashton has another hearing test coming up at the end of this month. We are hoping everything is still stable. His last eye appointment was a good one, he can see perfectly. He just needs to get his eye straight.

So, that's all for now. I will update once we get the date of surgery! I'm so happy he is doing so well!

Happy New Year

2010-01-01T22:03:00.000-08:00

I have never been more happy to say goodbye to a year and get on with a new one. Good riddance 2009! Here's to a much better, healthy, and happy year.

There is something that has made me incredibly sad and I'm hoping I can get some of you to help. Some friends of ours, I mentioned them before, have lost their baby girl not even a month ago. They would like to hold a service for her and put her to rest properly, but due to the fact that she has been in the hospital for the last year they couldn't work because they needed to care for her and her older sister.
They are asking for help to pay for the memorial. This is a great family who we had the honor of meeting while in the hospital. Their hearts are broken and are in need. Please read Tootie's story and if you can, donate to her. I'm attaching her caringbridge page. Please be aware though not to click the donate button on the page. That will send donations to caringbridge to run the site. This is a good cause as well, but it won't go to the family. The best way is to send a check to the address at the bottom of the last journal entry. Thank you so much!

http://www.caringbridge.org/visit/tootieisamiracle/journal

The BEST gift ever!

2009-12-23T11:17:00.001-08:00

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.

2009-12-10T09:45:00.000-08:00

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.

2009-11-13T00:49:00.000-08:00

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

2009-10-26T22:36:00.000-07:00

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

2009-10-12T20:27:00.000-07:00

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

2009-09-29T21:12:00.000-07:00

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!

2009-09-27T10:03:00.000-07:00

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.

2009-09-23T17:51:00.000-07:00

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.

2009-09-03T18:29:00.000-07:00

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!

2009-08-28T15:59:00.000-07:00

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!!

2009-08-21T15:49:00.001-07:00

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...

2009-08-15T07:18:00.000-07:00

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!

2009-08-01T10:11:00.000-07:00

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

2009-07-27T23:13:00.000-07:00

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!

2009-07-17T19:13:00.000-07:00

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.

2009-07-12T07:13:00.001-07:00

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!

2009-07-04T07:49:00.000-07:00

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

2009-06-29T22:06:00.001-07:00

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....

2009-06-26T19:37:00.000-07:00

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

2009-06-15T09:05:00.000-07:00

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.

2009-06-05T14:01:00.000-07:00

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

2009-05-29T14:10:00.000-07:00

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...

2009-05-28T18:44:00.001-07:00

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

Alexis.

2009-05-27T14:28:00.000-07:00

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

2009-05-25T20:43:00.000-07:00

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!"

2009-05-24T08:59:00.000-07:00

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...

2009-05-20T12:48:00.000-07:00

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

Blood.

2009-05-20T09:00:00.000-07:00

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.

2009-05-17T00:01:00.000-07:00

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

2009-05-15T19:37:00.001-07:00

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.

2009-05-12T21:25:00.001-07:00

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.

2009-05-07T08:38:00.000-07:00

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.

2009-04-29T23:14:00.001-07:00

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.

2009-04-21T09:27:00.000-07:00

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.

2009-04-19T11:43:00.000-07:00

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

2009-04-18T20:33:00.000-07:00

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.

2009-04-16T09:30:00.000-07:00

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.

2009-04-14T12:49:00.000-07:00

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.

2009-04-03T11:40:00.000-07:00

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...

2009-03-30T10:01:00.000-07:00

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??

2009-03-18T13:52:00.000-07:00

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.

2009-03-13T12:55:00.000-07:00

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.

2009-03-12T10:59:00.000-07:00

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.

2009-03-09T19:27:00.000-07:00

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.

2009-02-26T21:00:00.000-08:00

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.

2009-02-23T21:45:00.000-08:00

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.

2009-02-23T09:27:00.000-08:00

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.

2009-02-20T18:49:00.000-08:00

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.

2009-02-19T15:46:00.000-08:00

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.

2009-02-11T18:58:00.000-08:00

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.

2009-02-01T21:52:00.000-08:00

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.

2009-01-30T06:58:00.001-08:00

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

He's done!

2009-01-29T23:10:00.000-08:00

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!

2009-01-27T23:05:00.000-08:00

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.

late nights and emotions

2009-01-20T21:24:00.000-08:00

I did something last night I was told not to do. As I sat up late, waiting for Ashton to finish getting his water fed through his pump, I sat online reading another blog about a boy with a similar tumor who had passed away. I don't know why I did that. It was actually a link on a cancer message board and once I clicked on it, I couldn't stop reading. I had to finish the whole story to see how it turned out and man it was sad. So, as I tried to fall asleep last night, which really didn't go over to well, I thought about how I wanted to talk to Ashton's dr again. I wanted her to reassure me that things were going to be ok or at least to tell me why she thought they would be. I had a dream that I got to talk to her and asked why she thought he would be just fine....something she actually told me about 2 weeks ago.....in my dream she looked at me funny and said "I never said that". Then I woke up.....
I got about 4 hours of sleep and I am a wreck when I don't get 8 so basically I woke up crying just believeing this poor boys story would soon be ours. The thing about this boy is he had all his treatment and had many many scans that showed no cancer years later. Then 3 years after the first tumor, two more grew back. He went downhill from there. I was bound and determined to talk to the dr. today just to get a grip and clear my mind. Finally as we were leaving LPCH she called. She is the sweetest...she has an 11 month old baby boy so she really can relate to another "worried" mom. She told me that she truly believed Ashton would be ok. She said he is tolerating his treatment so well, and is otherwise a perfectly healthy boy. She told me she has alot of experience with Medulloblastoma, that it is actually the most common cancerous brain tumor in children and that most kids are high risk, like Ashton. I had no idea...I really thought we were the worst off. She went on to say that there is no reason for him not to be able to be cured from this....but, if something should happen....like a recurrance, then things would be more dire. His chances of survival would be much smaller and she would be completely honest with me about that right away. She told me that this is why he is getting such aggressive treatment right now...this is the one big shot at getting this thing in Ashton's head. She thinks he will be fine...she thinks he will be fine....she thinks he will be fine....I need to repeat that over and over each night. Even though the recurrance scares the heck out of me, I need to focus on the fact that she is very confidant about Ashton and has much hope for him. By the way, she told me that the tumor this other boy had was alot different from Ashtons...they can be in parts of the brain that are harder to treat. I need to not compare stories....I need to stay off the internet!
Lesson learned!

A friend of mine dropped a bag of stuff for Ashton on the porch today. Some healing cream for his skin and a bunch of wrist bands that say "Ashton's circle of hope" I can't believe he has his names on these bands! That is so cool! I believe they will be passing them out at the skate night or selling them...not sure which. Also, I had a phone interview with a reporter from the Press Banner yesterday. He said he was going to do a small story on Ashton along with an announcement of the Skate for Ashton Sake fundraiser. It should be in this Friday's edition so keep a look out.

Ashton was really sleepy today. He had a great weekend, he ended up taking 6 steps on his own on Monday so he is really making progress. Today though he was too tired. But, his smile is bright and his color is good and amazingly his white blood cell count was 5.4! That is up from Friday which was 1.2. A normal child has a WBC between 6 and 12 so Ashton is almost normal!! Those shots I had to give him each day this weekend really worked. He also doesn't need a transfusion again or a dose of platelets. Thats for now though...lets see what they say on Friday. He counts should not go down much anymore because he is just getting the boost of radiation to the brain at the spot where the tumor was. No more spine and full brain. Yipee! Maybe he will be feeling well enough to make it to his big night on the 31st. Even if its only for a few minutes, I will be so happy.

The light at the end of the tunnel.

2009-01-17T17:24:00.000-08:00

Only 8 treatment days left before Ashton's 6 week break! I can't wait!
Ashton is over the biggest part of Radiation but is still feeling the effects.
His head is really red and he has a bright red stripe running down his front and
his back. The skin there is so red and peeley and very tender. He is handling it
pretty well...not complaining too much, just says its itchy. It is so nice to spend a
day at home resting....I feel like this past week was very busy. He does have to
have a shot each day this weekend, and I have to give them to him. Thats not so fun.
We have to do that until his white cell counts come back up. Hopefully by Wednesday.

The really big news to share is he took 4 steps on his own today!! He was holding on to his
motor car and let go and walked to me! My hope is he feels good enough tomorrow and Monday
to do more walking because on the week days he just wants to lay in bed after the hospital.

I wanted to say thank you to the friends who stood after school this week and sold tickets to the skate night and thank you to Herb Gunderson for making the banner that is hanging outside the sport center. It is so sweet to see! By the way, the banner won't be at the intersection of Mt. Hermon and SV drive after all. Instead it will be outside the sport center until skate night so if you drive by, take a look! There were some issues with tax i.d. numbers and stuff, but really the best place for it is outside the actual place were the event will be held. I can't wait!

Once again...a day of surprises.

2009-01-14T21:40:00.000-08:00

We had a 12 hour day today. We left our house at 6:30 in the morning and got home at
6:30 in the evening. We actually thought we would be leaving the hospital rather early because he got in early for radiation. While Pat and I were eating in the cafeteria, Ashton's wonderful doctor, Michelle Monje, came walking in looking for us. She had got the results of his blood work from a few hours earlier and wanted him to have a transfusion today, immediately after he woke. His red blood cell count had dropped to the point where one was needed.
That was fine for us...Wednesdays are the days Pat comes with me and my mom picks the kids up at school because they have half days. It originally started because Ashton would still be having a nap on those days and she wanted to have the grandkids for the afternoon. It works well because she does need a break during the week. She has been getting up early and coming with me...thank you Mom!

We got to the day hospital and had to calm Ashton down a bit because he was still feeling some effects of the anesthesia. But, it is comfortable there, bed, blankets, flat screen TV...we weren't complaining. The transfusion would actually take 3 hours to give to him so we called to let our family know we would be a bit late. He did really well and he seemed to get color back in his cheeks almost immediately. He did have much more energy also. Yesterday was a very, very tired day for him. He didn't even want to watch TV. He just rested in bed all day. Today though, he was sitting up in bed playing, eating ice chips and licking the salt off saltine crackers. That is the most food to touch his mouth in weeks.

Ashton was having low white cell counts last week too so Saturday and Sunday I got to give him a shot to boost them back up. It was pretty traumatic for him. I got to practice on a nurse on Friday...she actually let me poke her with a needle full of saline to get the feel of things. What a brave lady...but it worked. I felt confident enough to do it to Ashton the next day. I had always wanted to be a nurse, but not for my own child. This experience so far has made me start thinking of doing that again. Or maybe just volunteering my time for an organization like Jacob's Heart. I feel such a strong need to help others who are and will be going through this. But, I'm jumpin the gun a bit here....I need to focus on Ashton getting cured first. After that, I will decide what to do.

We found out today that Ashton' s official end date is the 29th instead of the 28th.
They had forgotten about the time he was going to have radiation but they decided to
reposition him instead. So, that's OK....10 more days. And the greatest thing is we get to celebrate the end in a huge way, with all our friends at the skate night event on the 31st.
There will be a banner hanging on the corner of Scotts Valley Dr and Mt. Hermon Rd advertising it. I am so amazed at the lengths people go to for others...Not much good can come out of this whole experience with cancer, but so far there has been something that I had no idea about...the hearts of others, they can be huge! Thank you all!

What a week!!

2009-01-09T15:18:00.000-08:00

This was the first full week of therapy for Ashton and he has been so brave. Every week so far has had a holiday or there was the week where he skipped radiation, so this week has
been particularly tough. A full 5 days in a row and it just happens to be the week where he
is having full radiation beams to the brain and spine. He is doing ok...his face is pretty red and he has a red streak down his chest and back, but that will fade hopefully by tomorrow. The radiation will taper down for the next couple of weeks until treatment is over, so we are over the hump. Funny thing is he was way sleepier last week then this one. He was going to bed as early as 4pm where this week he has been up much later..he was even up till 8:30 last night, and I had to make him go to bed. The dr. realized that he could have been dehydrated last week so this week he has been getting fluids as he gets chemo and he really seems to be feeling better.

Wednesday was a day that I will remember forever. Our doctor gave us great hope.
I was telling her about a book I had received from a woman from Jacobs Heart. It was
all about Brain and Spinal cord tumors. It talked about everything there is to do with them and I found it to be pretty helpful to me...especially where they said that Medulloblastoma, Ashtons Cancer, is very sensitive to radiation and it is pretty much the power house for getting rid of it.
Our dr. told us it was true, that it is actually one of the few tumors that has really positive results from radiation. Then what she said made my day, my week, my year. She said, " I wouldn't say this to you if I didn't really feel this to be true, but I think Ashton is going to do just fine." She said she can't say that to everyone. My eyes filled with tears and my heart skipped a beat and pretty much I was on cloud 9 for the rest of the day. I believe it has something to do with the clinical trial he is on, or they must know something. I know that no one, not even the doctors really know for sure what will happen, but something about her optimism has just given me such great hope for the outcome I want so desperately. Of course though, my emotions can go from one extreme to the next. Later that same day Pat took some photos of Ashton and Ashton wanted to see them, so we scrolled through a bunch. There were still some short videos on his camera of our summer trip to Disneyland. The few I saw were of Ashton, running, playing, riding rides and smiling and waving. They ruined my night...I was in tears for the rest of the day. I think I need to wait a bit longer before viewing things like that..it's too painful right now.

As I have mentioned before, an amazing group of friends have set up a Skate Night event for Ashton. They are selling tickets now and I am getting so excited. I still hope Ashton will be able to be there, his treatment ends the 28th or the 29th of this month...two days before the big night. Here is the web address with the information: http://www.ashtonscircleofhope.net

Please keep thinking positive thoughts for us, we still need them.

The Year Ahead.

2008-12-31T21:03:00.000-08:00

Ashton has been getting more tired these last few days. Most nights he goes to bed at 5 pm and
sleeps all night. He doesn't have much energy during the day and the dr. says this is all to be expected. His blood work shows his red cells are down and the doc told me tonight he will most likely get a transfusion next week, which will perk him back up. She said everyone gets a transfusion during treatment, it is completely normal. I'm looking forward to him getting some of his old self back. Its funny though, his white cell count actually went up! He was 1.7 and she thought he would drop to .5 by Monday, but it went up to 2.9.....I don't know why or what that means but I guess its good. They did his blood work again today and the white count was the same. He is doing OK weight wise also, he is staying the same...not losing or gaining. I guess that's good too. His hair though...it's coming out in clumps. Its everywhere...the pillows, his clothes, my clothes. He looks cute though and doesn't seem to mind. It is somewhat hard to see this change happening even though I knew it would. I have to keep reminding myself that it just means the radiation and chemo are working. He still won't take any foods by mouth, he complains that his mouth is sore...which is another sign the medicine is working. I was asking the dr. the other day about his whole schedule and when would we finally have a test done to see if treatment is doing its job. I've read that sometimes on some kids it just doesn't work and wanted to get some reassurance. She told me she is sure it is working on Ashton. All those side effects he is having means the treatment is attacking his "good" cells which means it most certainly is attacking the bad ones too because those are the ones the medicine is made to go after. That made me feel better...for a few minutes. I will be under constant stress until we get the results of his first MRI, which is scheduled for mid Feb.

I finally asked the dr. about his whole treatment plan regarding scheduling and dates and such. Funny, I never got that all in order before but now I do have a clear picture as to what will be in the year to come. First, his last day of Chemo/Radiation is Jan. 28th....just before his skate night event! Yippee! I sure hope he is feeling better for that. Also, I know I have explained that Ashton is having chemo everyday before radiation because studies have shown that the chemo makes the radiation more effective, well we just found out that Ashton is the first child to take part in this study at Lucille Packard. That doesn't mean he is a guinea pig at all...just that he is the first at this hospital. There have been others in other parts of the country. I feel sorta proud about that. So, after Jan 28th he has a 6 week break. At about week four of that break, he will get the MRI, a Lumbar Puncture, and another hearing test. The MRI is what I will be the most nervous about. I hope and pray it is all clear....I don't want my little boy to be going through all of this for nothing. Anyway, after the 6 week break he will start the chemo/maintenance phase. He will be getting 6 cycles of chemo and each cycle is 28 days. We will only have to get the chemo during the first week of the cycle and maybe make some trips in a few times within the 28 days. Certainly, it won't be as time consuming as the radiation is now. This means we will end probably around the end of August. That is just a guess...there will most likely be speed bumps thrown in from time to time, like fevers that require hospital stays, or time off when the blood counts are so low and need to come up. But all in all, its so good to know we have some sort of time table and have plans to look ahead to. Our family usually goes to Disneyland each June but we won't be able to do that this summer. We've already discussed going in October, which is the best time to go anyway :) I think I may make hotel reservations this week...Something to really look forward to.

Right now, there is a little more then 2 hours left in 2008. There is so much hope in this New Year ahead and I have never been so excited to put this old year behind me and look forward to a year of happiness and cure for our family. I also wish health and happiness to all out there reading this....It really is all we need.

Quick update.

2008-12-27T22:50:00.000-08:00

It's been a while since I have posted, and really, not much has changed. We managed to get through the holidays nicely....Ashton had a nice Christmas and Santa was good to him and his brother and sister. We completed his second week of treatment, minus one day for Christmas, and this week went much smoother than the first one. There was only one minor problem last week but it was easily fixed. Ashton threw up on Thursday night...we think he had too much of his liquid food....and he threw up his feeding tube. So, we had to pull it out and he got a new one the next day. It really wasn't a big deal, the only bad thing was Ashton was so happy to not have the tube in his nose for one whole night and was pretty bummed when he woke the next day from radiation or as we call it "his short nap" and found he had a new tube which is a teeny bit bigger then the old one. But, he's OK with it all now.

The dr. told us last Monday that his white blood cell count was really low. Normal is between 4 and 12 thousand and he was at 1.700. She said by this Monday he will most likely be at .500, so we need to be really careful and not be around anyone who is sick because if he gets a fever we have to go stay in the hospital for a few days. He is really tired now too and is going to bed around 6 or 6:30 on most nights. Other then that he isn't having too many terrible side effects as of yet. Of course we are all keeping our fingers crossed and hoping we have another smooth week coming up.

One other new piece of news is we have decided to hold off on Physical and occupational therapy for about a month. It was just too much for Ashton and he wasn't getting 100% of it all because of his being so tired. It just makes sense to wait and we know a lot of what to be doing ourselves so we can work with him. He is walking a lot more now, just holding one of our hands, and is improving all the time. Still a little wobbly but I'm thinking it won't be long and he will be on his own. He can climb on and off the couch by himself and just seeing him do that is so major for us. He really is a special guy.

I most likely won't be posting very often unless something happens that is important. So don't worry if you notice I'm not posting as much I have been. We are just so busy and day to day, things are mostly the same. Please keep Ashton in all your thoughts and prayers though...his battle is just beginning and he needs all the positive thoughts he can get still. Happy New Year!

We survived the first week.

2008-12-19T21:49:00.000-08:00

The last couple of days have gone pretty well, with one exception. I'm sure everyone knows that Ashton has to be put under for his radiation...every day. This is the hardest part for me, the watching him go to sleep and the waking up. The last thing I need is to have to worry about him while he is sleeping, but I do. I'm sure everyone would because there is always a risk with anesthesia. Yesterday, the anesthesiologist was in the recovery room when I came in and told me of a "little" problem they had. The mask Ashton wears over his face during radiation had pushed his lower jaw down enough to block his airway for a slight amount of time. They are close by and watching him all the time, so he came in the room and put an oxygen tube through his nose right away. This just bothered me so much, I mean...this is Stanford...aren't they experts at what they are doing?? I was told today that it had something to do with the roll of towels they had originally put under his neck...the towels were there for that reason, to keep his airway open. When they re-did his foam "mattress" they didn't need those towels anymore which in turn caused this problem. I was really concerned about today but they told me everything went smoothly. This mask he wears latches onto the table he is on and puts pressure on his face so that is why this happened. Do I have to worry about this everyday from now on?? I'm a mom, so the answer is yes.
Some good news is Ashton got to take his Escalade for its first spin yesterday and he had a blast! He was driving his sister all around and had all his grandparents there with cameras and video cameras to catch every second. My mom will be posting a photo of him for everyone to see...he just loved it! Today we got home super early and had a nice long afternoon to rest...well actually there is no resting for me...I'm a nurse to him 24 hours a day, but at least we were home. We even went and looked at Christmas lights this evening. We usually do the local poker run light cruise, but we missed it this year.

Ashton did surprising well today after his first full week of treatment. I expected him to be so sleepy but he was happy and having a great time at home. We received a backpack today for holding his bag of liquid "food" and the pump for it, which will be nice because we can take it everywhere. He is getting more and more used to it, but it still bothers him a little. He gags on solid food but we are hoping he will stop after he adapts. So that's it for now...week one down...now 5 to go!

A Special Surprise.

2008-12-17T23:01:00.000-08:00

Ashton was given a feeding tube today, so feeding problem solved...I think.
They weighed him first thing this morning and he was 11.4 kg. Last Friday he was
12.1 kg. That is a big change for a guy his size. With the weight loss and his lack of appetite they decided that they would place a feeding tube through his nose into his stomach while he was under anesthesia today. He woke up great but very unhappy about this new feeling in his throat. He is going to have it in 24 hours a day everyday most likely for the next 6 weeks. Tonight we have just been giving him his food, which is just like PediaSure, with a syringe. Tomorrow night we will get more food delivered to our house along with a pump, to regulate the amount he gets, and a back pack to carry it around with us. This takes a lot of stress off of me...I've always been worried he wasn't getting the right nutrition and this is comforting to know he will be getting everything he needs. He can also eat any solid foods he wants, he just hasn't been interested yet. He is still getting used to the tube, it makes him feel gaggy every so often and the dr. said it would take a day or two for him to not really notice it anymore. So that whole procedure kept us at the Hospital until 4:30 this afternoon. Not a good time to be leaving because the commuter traffic is pretty bad. We needed to get home by six because a bunch of Pats friends from work were going to be stopping by to visit and to bring some food. We made it in time and they all showed up about 15 minutes after we got home. What came next was a huge surprise.....

There was a knock at the door and I could hear quite a few people on our porch so I grabbed Ashton and we stood at the top of the stairs as Pat opened the door. The next thing I knew, we were being greeted by many smiling faces, a Santa hat or two, and a BIG BLACK CADILLAC ESCALADE "MOTOR CAR". Ashton was so thrilled. Thank you to all of you sweet generous people who brought that to him and made his hard day turn happy. You all know who you are and really, I can't say enough thanks for this special gift and all the other great things you brought. Ashton sat in that car for about 40 minutes tonight and it is still sitting in the middle of the living room. We plan to keep it there until he can really take it for a spin outside. Can't wait!

After the kids were in bed tonight, I met with a special friend who has a son going through a similar situation. Different cancer but we are dealing with many of the same emotions. We had coffee and just spilled our stories. There is another local mom who should have been joining us, the meeting was not clarified and wires got crossed, but next time I hope she is there. We plan to meet quite often and just give each other support. Tonight I don't feel so lonely...there are so many people out there who care and knowing that makes me feel so great.

Eating problems continue.

2008-12-16T20:23:00.001-08:00

Ashton has stopped eating. He started slowly over the weekend and it just keeps getting worse. Today he didn't have one bite of solid food. He had a few sips of hot cocoa and some water, but none of his usual favorites, cheese pizza, oreo's, and lemonade Capri sun, are even appealing to him anymore. He is constantly complaining of soreness in his mouth. The dr's say it could be a side effect of the Chemo. I'm to rub Ora-gel in his mouth, which I haven't been able to do yet because he doesn't want anyone touching it. I don't think it would help anyway, it would just make his mouth numb and who wants to eat with a numb mouth. I'm hoping they will give him a drug soon, one that causes hunger. It is so frustrating because as a mother my natural instinct is to feed my kid. To make matters worse, he say's he's hungry, then when I try to get him to eat he cries and cries. This is probably nothing compared to what we will be going through in the future though...just the beginning. He had his chemo and radiation today so that's good and he really didn't act too uncomfortable tonight. His grandma Mona arrived today to stay until Sunday. She took a train from Texas and has been staying at her sisters in Madera because she got sick. We really have to be careful about sick people now. The dr. said his white blood cells were a bit below normal and I know they will continue to drop. He will be getting the flu shot tomorrow so he can build antibodies to it while he still can. Nothing else much is new...we are still receiving dinners every night and are so thankful for them. Thank you all so much for helping! I also wanted to mention that I have some great friends who are planning a fundraiser called "skate for Ashton's sake". I don't know many details yet, just the date...Sat. Jan. 31st at the Scotts Valley Rink. I am so looking forward to this event, I feel like it will just be a nice celebration of Ashton. My only worry is that he won't be well enough to attend. He will be almost done with Radiation and that is when I've been told he will be very sleepy. I'll be keeping my fingers crossed because I know he would love to be there.

Up's and Down's

2008-12-15T19:04:00.000-08:00

This past weekend was a mixture of emotion. Saturday we went to an event called "Fantasy Flight." It was put on by the San Jose Police dept. and it was so amazing. The organization is called Cops Care Cancer Foundation, but the event was open to all children facing a life threatening disease. There actually weren't that many families there...maybe about 50 or so.
It started at Yahoo in Mountain view where we were greeted by police officers and firemen.
I have to comment on the Yahoo building itself...whoever works there is so lucky! It was beautiful and it looks like it would be a lot of fun to work there. We were served lunch and given a goodie bag full of stuff. After lunch we were shuttled, with full police escort, onto Moffet Field, where the party took place in the SJ Police Dept. hangar. As we were lining up for the shuttle bus, a man called out that there was room for one child and a parent to ride in the firetruck. I waved at him and he chose Ashton, so Pat rode with him. He cried at first because it all happened so fast and was very exciting, but he settled down after a while. So, they really did a full escort...police motor cycles, police cars, a fire engine...you name it. It was a pretty long line of cars with their sirens going and lights flashing. We had to go on the freeway for a part of the drive and people were moving to the right for all of us. It was really great. Once we got to the hangar, Winnie the Pooh, Tigger, and Eeyore were waiting for us. I had to grab my stroller and stuff and didn't really pay attention to the characters, I just wanted to get in doors because it was so cold. We weren't prepared for what happened next...As we entered, there were about 50 police officers lining either side of the doors and they were all applauding us. Seriously, it was the strangest feeling, but they wanted everyone to feel like V.I.P's. They had the whole hangar decorated and had fun and games all over but Ashton's favorite part was sitting behind the wheel of the S.W.A.T. car they had on display. He must have sat there for an hour total. Funny, it sorta reminds me of the black "motor car" he loves so much...maybe it reminded him of that too. The big part of the day was watching the police helicopter take off just a few feet away. They told us they had to rescue Santa and sure enough, about 10 min. later they flew back with Santa in the back seat. He had toys for everyone and everyone got what they wanted....They had asked me over the phone what it was my kids wanted so I had an idea what they would get ahead of time. It truly was amazing and I have to hand it to the police officers that put this on....it really is/was special.

Sunday was a different story...Ashton got sick in the morning and I had a pretty bad reaction to that. I think it caused some feelings of anxiety because of the major trauma we had all been through on Nov. 12th. From now until forever I will worry each time he throws up. Luckily, our Social worker came out to the house at 10am and I let it all loose to her. She is so helpful, but I had puffy eyes the rest of the day. Its really amazing how my emotions can be all over the place. One day I'm fine, the next I'm in the deepest darkest depression and feel like I will never come out of it. It is the most awful feeling. I told her how I had been looking for information online, which I know I shouldn't be. She told me I was looking for Hope. Its true, the worst part about this is not knowing the outcome but she helped me by telling me that when I'm feeling that way to try and pull myself back to the present. I need to live each day one day at a time and not dwell on the future. I can't control it anyway. She told me some other great and helpful stuff but it is too much to write, I'm just really thankful for her.
And just like the commercial states, depression does hurt. I feel sick a lot. I was telling someone today that I feel better on days we go to the Hospital...I don't like to sit and be idle. At least at the Hospital I feel like I am doing something about his Cancer.

Ashton did have some reaction to his treatment. Like I said, he threw up on Sunday. He hardly
ate anything all weekend and he got really sleepy early. The dr. told me that there are drugs to give him that will make him hungry. I am thinking he is going to need those....he tells me everything tastes funny and I'm pretty sure that is a reaction to the chemo.

Today we set out early for his normal treatment. There was an accident on 17 and it took us 2 hours to get to the hospital. That wasn't fun. He had his port accessed, which I was really worried about, but he did really good. He hardly cried at all. He had his chemo and then went on to radiation. Today he went to sleep so easily...I was talking with the nurses and to Ashton and the next thing I knew he did a deep yawn and the nurse said "there's the yawn" and he was out. Once again, I slowly laid him down and kissed him goodbye. I noticed about an hour later that we had been waiting for quite a while. Shortly after that the nurse came out to tell us that he was doing well but he wasn't going to get radiation today. Instead they decided to make him a foam pad to lay on that would place his body in the same position each day. They really take a long time to position him right...the radiation is only a few minutes....the positioning can be a half hour. I guess they used a towel rolled up under his neck to position his head last time, but today it wasn't lining up right. And the dr. said it needs to line up the same each day, so, we had to wait another hour while they did that. We plan to talk to the dr. tomorrow and ask why this foam pad wasn't made BEFORE he started all this. Now he has one more day added on to his 6 weeks...another day to be put under. He woke aggitated again and that is a hugely hard part of the day. It takes a lot to calm him down. But eventually he does and we leave waving goodbye to the nurses and saying "see you tomorrow!"

A friend of mine started a cause on Facebook called "Ashtons Circle of Hope" I am so thankful
for her and the page and story are great. Pat and I were reading it together and I told him that I can't believe this is all about our little guy. It is still surreal at times. Hopefully soon I will feel like I have a handle on things. I know there will always be "puffy eye" days but hopefully, someday, there won't be so many.

The Beginning.

2008-12-12T21:34:00.000-08:00

At about 8:45 today, as I sat with Ashton in a hospital bed, I watched the very first
dose of Chemo go into my little boy. He had no clue, he was too busy watching Mickey Mouse Clubhouse, but somehow I knew this moment would be permanently etched in my brain forever.
He did really well with the Chemo. Besides being hungry that is. He started with a 15 minute drip of anit-nausea medicine, then the syringe of a chemo called Vincristine. After that he had a 15 minute drip of a chemo called Carboplatin. He will have the Vincristine once a week and the Carboplatin every morning before the Radiation. This will be for about 6 weeks. We have Christmas morning off and New Years day, but will be there Christmas Eve. That is sorta icky but we usually don't do any family stuff until the evening so it will most likely work out.

After the Chemo we had to check into pre-op, but just for today. After today we have a different
schedule which is a bit easier with less wait time. Anyway, we checked in, had to wait a while until finally they took us to the room where his Radiation was to be. This time, since his port was accessed from yesterday, they gave him his sleep medicine in his vein. It happened really fast, I was actually holding him. He had begun to cry and get worried and then I felt his head and neck droop and his body get heavy and I knew he was out. At this point the nurse was helping me lower him on the bed and we were sent out so they could begin. They did call me back to kiss him goodbye because I had forgotten. I thought that was nice. We waited in a small room just outside because we were to speak to the nurse we would be seeing everyday for some instructions. She was very helpful, but one thing she said scared me. She mentioned that Ashton was the first child she has had who received chemo every morning before Radiation.
She has worked there a while too. I asked why that was and she told me I should probably get that clarified with the dr. So, I did....My first thought was that his cancer was so far gone and there must be something that no one has told me yet. But, it turns out that because Ashton is participating in the "Study" this just so happens to be the protocol for him. He also just happens to be one of the first at Stanford to have it that way...the first there, but not in the state. Other kids may have chemo once a week, but higher doses where Ashton is having it every day in a smaller dose. After all that was cleared up we went and grabbed Ashton a hot cocoa and made our way to the waiting room and sat until they called us. It was an emotional day for me.
I think it was for Pat too....he got choked up a bit when he was receiving Chemo and later told me that as we were talking to the nurse in the Radiation dept., he kept seeing the light above the door Ashton was in, flash off and on....it read "beam on". He knew our baby was in that room and they were all in there to help him, but there was still something very sad about that.

Ashton had another hard wake up today...not as long as before, but man he knows how to yell and scream! It seems to only happen when he wakes up too fast, not gradually. He hollered and cried for a good 10 minutes but then like a light being switched, he stopped. No more crying, he was talking so sweet to the nurse he had just got through calling "stupid!" which has become his angry word around the house and hospital, and we are allowing him that. We don't allow him to call people that though, just FYI :) But after all that he did really well.

It wasn't until about 4pm when he started to say he was sleepy, his foot hurt and his tummy hurt. Pat called the dr. about his foot and as he was talking to her Ashton started to act really strange. He was sorta floppy and closing his eyes as he was sitting on the couch but I roused him and he was just really tired. I got on the phone with the dr. asking if it was normal for him to be so tired on the very first day of this and she said it was. She told me to remember he had gotten up really early, had had a lot done to him today and....and this is the good thing.....there are tumor cells dying inside him right now. I love how she put it.."There are tumor cells dying inside him, they are spilling their guts and his body has to get rid of all that." Wow. She said, "In a way it is good he is acting like that..it means things are working." Ok, I'll take that. I didn't know it would happen so fast, but I'll take it.

Tomorrow.

2008-12-11T22:04:00.000-08:00

Tomorrow marks one month since our world was turned upside down. I can't
believe it has been that long already. I was talking to my aunt today and I told
her I was actually having trouble remembering how Ashton was before. She said
she could and that she gets flashes of memories and they make her sad. She is his
most favorite aunt by the way and she spends alot of time with him. She also said maybe
my brain is blocking out those memories because they are too painful. I don't know....I do
know that Pat recently showed me a quick video we did on his camera of Ashton in the shower
being so cute. He insisted on taking a shower instead of a bath and didn't want any help.
We had to keep the curtain closed, but Pat managed to stick his camera inside without him seeing and caught some really cute stuff...he was trying to wash like a big person and was so determined. When I saw that the other day I just felt like I was punched in the gut, or in the heart. I just keep telling myself that he will be that way again, healthy and happy. I just need to have patience.

Tomorrow we also start Chemo and Radiation. Strange how it is exactly a month since diagnosis. I am a bit fearful of what to expect as far as reaction to the drugs, but I know we are in the best hands and things should be explained as we go along.

Today went better then I expected. We had our "dress rehearsal" and set up for radiation.
Ashton had to not eat again, but it will be that way M-F for 6 weeks so I need to get used to it.
He did ok since the procedure time was earlier then last time. This time I stayed with him as they put him to sleep. There was a bit of time where no one knew what they really wanted to do with his sleep medicine. From now on, they will just put it through the tube in his port, but since it wasn't accessed, meaning didn't have a needle with a tube hanging off, they were either going to access it in the procedure room or give him the gas. I guess accessing the port can be very traumatic for some kids. We are to apply a numbing cream an hour before the access, so it doesn't hurt. Its just that there is alot of pressure and that can be scary. So, that was the plan today, access him and have him sleep that way but once the dr. saw that he was getting really upset, he decided to use the gas. I held him for a bit until they told me not to breath in that direction in case I caught too many whiffs and should fall asleep too. Ashton was scared and crying but they held him and talked to him and in a few seconds he was out. We said good bye and went out in the hall for further instructions. Oh, I forgot to mention that before all this we had to sign a consent for Ashton to get a tattoo! Crazy, isn't it? It is just a small dot, smaller then a freckle, but it will be there the rest of his life. It is on his chest and is there for the purpose of proper alignment of the radiation machine. My baby has a tattoo....imagine.
They ended up accessing his port while he was asleep and that means he doesn't get poked tomorrow. He has this big tube taped to his belly and it is uncomfortable, but like everything else, he will get used to it. They will take it out tomorrow for the weekend, so Monday will be the day of dread...the day they access it before his chemo first thing in the morning...he won't be put under for that. He has a child life specialist who plays with him and tries to make him more comfortable...her name is Vanessa and he really likes her.

He didn't end up having any medicine to calm him before the gas and he didn't have any to help him feel better as he woke. That turned out great because he didn't have the reaction he did last time. He woke up, cried and complained...asked for the sprinkle donut that they were unfortunately all out of in the cafeteria....got mad about that but then got a Popsicle instead.
About 10 minutes after he woke, they sent us home. We were so happy it turned out like that.

Tomorrow is the beginning of his treatment, the beginning of the tough part, but really he has managed to make it through major brain surgery and the complications that came with that,
why would I have reason to think he will have trouble with this....bring it on!

Motor cars, Trains, and Helicopters.

2008-12-09T22:15:00.000-08:00

Ashton got to make another trip to toys r us today and I'm happy to say he was able to sit in the black escalade power wheels, or as he calls it, "the motor car," for quite a while. He was smiling the whole time. Pat stayed with him while I did some shopping and at one point I came upon him in the pink car...not sure, maybe his taste is changing :) But, I am so happy he was able to do that. He also had an appt. today with the physical therapist and he didn't call her a stupid lady once! He actually warmed up to her a teeny bit and was enjoying showing her his toys and playing with her. Later after she had left, Pat was helping him do some walking. They were coming to me and when I exclaimed "yeah, good job!" he said..."my walking is so stupid." He was referring to the way he takes his steps now, and how they are different then they were before.
That was sad but I just told him his walking was great, and it really is. Compared to a week ago, it is fantastic.

Pat's mom is in California. She is staying at her sisters house in Madera and can't come visit
until she is well, she caught some cold on the long train ride here. Pat is anxious to see her and she is anxious to see us. I hope she can stay with us for a while...she will be a lot of help and the kids love her.

I finally contacted Jacob's Heart today. I was having a really depressing moment and decided to call to see what support they offer. They have a support group for all the family and are actually having a Christmas party this Friday. We may go depending on the way Ashton feels. It will be nice to be around other families with similar circumstances. This Saturday we are all heading to a pretty big event called "fantasy flight 2008" It starts out at Yahoo, in Sunnyvale and they shuttle us all to Moffet Field. It is an event put on by the Cops Care Cancer Foundation, but is open to all families with children who are facing a life threatening illness. There are gifts for all the kids...siblings included and we hear Santa flies in on a Helicopter. We are all looking forward to this and maybe having a day full of fun and a little Christmas cheer.

Tiny Footprints.

2008-12-08T20:56:00.001-08:00

Ashton had a hearing test done this morning. It was a bit strange for him but he did really well. They first test the ear drum by some type of computer system and all things were normal.
Then they test something else...can't remember exactly but something to do with the hairs in the ear and that was good too. The final test was done by him responding to the testers voice. Now this was tricky because Ashton can be stubborn and shy and may not do as she was told. Not because he didn't hear her and understand her, but because he just didn't want to. After all was said and done, she believed he didn't do so well with his left ear. She came to this conclusion because she had put ear phones on him and when she would tell him to do something; in this case it was stacking blocks, he would respond only when she spoke into his right ear. When she spoke into his left he just sat there, then she would immediately switch to his right, and he would stack. She said it could have something to do with his left side being the weaker side, and maybe some how due to the surgery, there is some block from listening to a command and processing it in his brain and being able to do the command. I don't know....after we left I did my own test and whispered words into his left ear and asked him to repeat them. He got them all right, so I have a strange hunch he was just being stubborn. I guess we'll just have to see.

Things are moving right along, Ashton's next appt. is Thursday where he will do a kind of "dress rehearsal" of a radiation treatment. They will go through all the motions, even putting him to sleep, but will be given no medicine. I was a bit upset when I first learned of this. It means another day of him going hungry, our appt. is for 10:30, and after his horrible reaction the last time he went under, I am just dreading it. I guess it is important though so of course it must be done. Its funny because all along I have been so anxious about him getting into treatment and getting better, but now I'm starting to get scared. I know this treatment can make him very sick. I also don't know much of what to expect and that is the most scary of all. It is going to be such a long, exhausting, tough thing for him to go through and I just don't want to see him suffering. It makes me sick to think of it.

Tomorrow, Pat is taking the day off because he has an appt. at the Social Security office. Our social worker told us we needed to apply for it for Ashton and it may be a long appt so he just decided to stay home the whole day, which is great. Pat needed to get a number of documents together for this appt. and one of them is Ashton's birth certificate. I keep all my kids certificates in their baby books and told Pat where to find it. As he pulled Ashton's book out I realized I had never taken the time to put it together like I did my other kids. They all have photos and writings done, with hair clipping and hospital wrist bands. Ashton's book has everything just thrown inside it, not put together.....I guess I just never had the time. This struck me as incredibly sad. I haven't cried for at least a week, but tonight when I saw his baby book and saw a white paper flutter to the floor that wasn't glued in, I lost it. It was his little new baby footprints...so tiny, so innocent, hours old, and not in their right spot. I'm hoping tomorrow or the next day I can find the time to put it all together. He is the third and sometimes that means his mom is too busy to do the things she did for the others, but this is so important to me and he is so worth it.

Not much to say.

2008-12-07T19:38:00.000-08:00

There really isn't too much to write about today.
We had a really nice day at home...had some family and friends
stop by, which is always nice, and we just got alot of stuff done.
Costco and laundry...regular chores. One thing to comment on is how incredibly well Ashton is doing. He was hardly in bed today at all. We are now having him eat in his booster chair, which he can fully sit up in, and getting him to spend alot of time sitting on his own. I mentioned yesterday that he is scooting on the floor now and he did more of that today. He's finally getting around! I'm sure everyday he will go a bit further...it is so awesome how children can just bounce back. It makes me feel so much better to see him doing so well. He isn't even complaining when we make him walk now....I don't know what happened, he just stopped. He was so stubborn about that and I was getting worried so I'm feeling so great about that.
Tomorrow we have an appt. early for a hearing baseline test, but that is all. The Psychological test was canceled because we were notified by the dr. today that it isn't normal protocol anymore. They will test him within the next six months. Its nice to have just the one appt.
and I'm looking forward to another day full of improvements!

The Stupid Ladies.

2008-12-06T21:05:00.000-08:00

I escaped for a few hours this morning to do some Christmas shopping. Those who know me know that shopping is one of my most favorite pastimes, but it's not so much anymore. Everything is different now, or I see things in a different light. It just wasn't as much fun. The good thing is I'm pretty much done. I know I won't be getting many more opportunitites to shop before Christmas, so its good I did it today. Ashton met his Physical therapist, his occupational therapist AND his speech therapist all today. The OT and the PT came at the same time. It took a long time for him to warm up to them. He was not happy at all. He called them "stupid ladies" a few times, but they didn't mind. He is still having a bit of something called Cerebellar Mutism. It is due to the surgery and where the tumor was. He isn't mute of course...his speech is actually great, almost to what is normal for him, but he is easily agitated. These ladies just made him mad and he wasn't able to make them go away so he expressed his feelings really well....at least that's what they said. :) They were all very nice though and we scheduled a few more appts. for next week. They told me a few tricks to do with him to get him moving and at one point as I was letting him sit by himself on the floor, he actually turned to me and scooted into my lap. I was so amazed, I didn't know he could even do that! I'm to practice with him and get him to kneel in front of the couch with his toys on the couch, in hopes he will pull to standing. Alot of what we will be doing is like what you do with a baby to build the muscles. They want me to give him tummy time too! That will strenghten his neck and back muscles. His back is already so much stronger then a few days ago. He sat by himself and played the drums that were so kindly lent to us.....Thanks alot Tim and Sonya!!! Just kidding, he loves them.....but he sat for quite a while playing with them. After all the therapy was over, we decided to go to the Christmas tree lighting ceremony at the community center. Things were kinda crazy there....too many people so we went for a drive into Santa Cruz and checked out the lighted boats in the harbor. Eveyone really liked that. After that we drove by Ashton's favorite church, Holy Cross and let him see it all lit up at night. There was a mass going on and I really wish we could have gone inside and let him see with it looks like in there. But, by this time Ashton is so tired because he didn't end up going to sleep until midnight last night due to the medication they gave him at Stanford. We decided to come home and I read him a few stories and he instantly fell asleep.

Butt kickin' time.

2008-12-05T22:04:00.000-08:00

What a hard, hard day. Ashton had an appointment at 12:10 with the radiation clinic to get his special mask made that he will wear during radiation. Of course, he was not to eat after midnight last night, and of course he woke up very hungry. We were allowed to give him clear liquids until 2 hours before his appt. time so we cut him off at 10:10. He cried and cried the whole way over to Stanford....and complained the entire time we were waiting which ended up being FOREVER because he didn't get taken back until 1:40!! I was furious....they schedule the early time in case we had paperwork or whatever, but we didn't and there was no reason for him to suffer for so long. He took a medicine to relax him before they put him under and it was so sad to see him smiling and being so loopy. At one point we were in the hall as they set more stuff up and he was just sitting there smiling and looking so sweet, like everyone was his friend. I felt sorry for him. It was at this point that Pat noticed a couple of people walking down a hall close to us and one of them was Willie Mays! He couldn't believe what he was seeing and tried to go after him but he slipped out a door somewhere. One nurse told Pat that celebrities do come and visit around the holidays and they don't let anyone know ahead of time, they just show up. My husband was starstruck.....I wished Pat would have got to meet him, it would have made his day. After that it was time to take Ashton back to the room where the procedure was being done. We were allowed to come in while they put the mask, for the gas, on him and be there as he fell asleep. I tried to stay, but just couldn't. I got too choked up seeing him looking up and smiling as they put the mask on his sweet face, waiting for him to go out. This will happen Monday thru Friday for 6 weeks. He has to be put under for his radiation because he has to hold still. Someone I met at the Hospital who had a little boy, younger then Asthon, that had just been through radiation, told me the hardest thing for her was watching him go to sleep everyday. I didn't understand that when she told me, now I do. They gave us a pager and told us it would be a couple of hours before he would be done, so we went and got lunch, but I hardly ate. It was difficult when I knew Ashton was so hungry and I wanted to wait and eat with him.
I had no idea he wouldn't be eating anything until 6 at night. When he woke from the procedure, he had a pretty bad reaction to the anesthesia (sp?) He just was so upset, he screamed and screamed for at least a half hour to 45 minutes. They finally gave him something to calm him down but that took a while to take effect and it was so hard to see him going through this. I asked if this is what it would be like each day for 6 weeks and they didn't know. The nurse said this happens sometimes and that he wouldn't be out for so long with the radiation so maybe it will be easier. He did do something funny though, once he began to relax and settle down. The medication they gave to relax him also made him act a bit drunk so he was saying some pretty funny things. At one point there was a few other people in the room, a social worker, nurse, dr. and Ashton blurted out "Its butt kickin' time!" Everyone laughed and I had to explain that he has been watching ALOT of Spongebob lately and he had just watched an episode where some bigger fish was wanting to kick spongebob's butt. It was cute, but in a way....he's right. Time to kick this cancer's butt!! Once we left the recovery area we went to the cafeteria and got Ashton a grilled cheese sandwich and some ice cream. He ate it all in the car on the way home. I ate nothing, my head was hurting so bad and I just had no appetite after this hard day. It is 10:20 and Ashton is still awake, tossing and turning in bed, the effects of today have not worn off yet.
I'm am hoping, really hoping, this is not how it will be for the next 6 weeks.

They finally gave me his start date, its next Friday the 12th. He will come each day for an 8 O'clock appointment and that means I have to leave at about 6:45. My stepdad has agreed to come and take the kids to school. It will be hard the first few times but I'm sure we will all get the hang of it. The good thing is he won't have to be hungry all day, he can eat after treatment, and they said we should be ready to leave the hospital around noon each day. That means we will have time in the afternoon for physical therapy, which he still has not received due to all the appointments popping up. They are coming out this weekend, so that is great. Monday he has appointments for a hearing baseline test and a Psychology test. They will be keeping track of any problems he will have due to the radiation and the dr. told me, he will definitely have them.

A play date and Hope.

2008-12-04T21:37:00.000-08:00

Pat went back to work again today and this time he made it through the whole work day without having to come home. I don't know how I made it, both my older kids stayed home with
sore throats. Cassidy's was going on the third day and a friend of mine who had her over recently let me know that her son had strep and that I should get her checked out. So I did....and she has strep throat. Of course now I will be watching Ashton very closely. I don't know what will happen if he gets it, don't know if it will set him back with his treatment.
My older son needs to go to the dr. tomorrow and get checked.......when it rains, it pours!

For the last few days I have been so excited to get to have a play date with Ashton's friends
this coming Friday morning. This afternoon, I got a call from Stanford saying they scheduled Ashton
to have his mask for radiation made for Friday at noon. That of course would make his play date impossible. He has to be put under for this procedure and that means he can't eat or drink after midnight tonight. He can have certain liquids up until 2 hours before surgery, but that won't help when he is hungry. Plus we have to plan the driving time, so I knew there would be no way to make our play date. I called and emailed everyone to see if we could make our date for this afternoon instead and fortunately many, but not all, were able to make it. It was great to see Ashton's face when he saw his friends. We all walked to Starbucks for hot cocoa and Ashton even wanted to get out of his stroller and sit on a couch in the shop with his friends. After that we went to the park and the boys played in the sand. Ashton had me take him down the big slide a couple of times and I usually don't do that....so it was fun for him. Thats one thing I will do when he gets better, play more with him. I can't wait! I really want to keep up our usual playgroup meeting once a week through his treatment and I hope I can. It depends on how he feels. Once we finally find out when it will start and what times, things will be easier to schedule.

Someone from the radiation clinic called today and told me he is set to start on the 15th.
Luckily Ashton's Oncology dr. called us later in the morning, letting us know what arm of
the "study" Ashton was randomized to, so I told her about the 15th start date. She said
"no way, thats not going to work". And that he needs to be in treatment before the 13th, which is exactly one month from his surgery. She was going to call me back about that but I haven't heard from her yet. I sure wish I could just get the date! Oh well, I know it will work out and he will start soon enough.

I got the sweetest gift today from a friend who brought us dinner. After showing us all the goodies we had to eat she said she had something for me. She had been Christmas shopping and something she saw made her think of me and so, she bought it. I opened the gold box it came in and inside was just the sweetest silver necklace. The pendant is a simple hammered circle and there are a few beads that dangle along side, but written inside the circle is the word "HOPE"
I will wear it everyday because I will be hoping everyday.....Thank you friend :)

Hair and the White Church.

2008-12-03T21:14:00.000-08:00

Ashton saw this photo above of himself today and said, "I want that hair again. I want hair like mommy's." I told him it would grow back soon but as I said it I knew it wasn't the truth. The dr.s told us today that they definitely want to start his radiation before the 13th. That would mean he starts next week. They also said all of his hair will fall out very soon thereafter.
I'm ready but I want Ashton to be ready too...I think he is, it would be nice if he was walking
and all that though.

Ashton has always been very obsessed with Holy Cross church. Whenever we come into town to visit my mom he spots it and talks about it. He calls it the white church.
Once this summer we even stopped and let him play on the stairs and I have many photos of him looking up at the tall steeple....it really is a beautiful church and a genuine Santa Cruz landmark. I don't know what brought the church up today but he started talking about it while we were waiting for the doctor. He asked if we could go to the white church again...he said he wanted to play on the grass, which is the park across the street from it, and then he said something so heartbreaking, he said "I'm gonna run and run on the grass.". Pat and I just looked at each other and thought how sad that sounds. He will run and run again soon...I may even take him by there tomorrow and see if it motivates him at all.

We had such a busy day at Stanford, but our appts. were spaced really far apart, so we had a lot of time to kill. We decided to go to the mall nearby and just wander around. The only place they had there with toys was Pottery Barn Kids. We took Ashton inside and let him check things out. It was actually really hard for me to see other kids running, and playing with the toys when I knew Ashton wished he could too. I got in line to buy a few things and I heard the check out woman say she was a grandma to the lady making purchases in front of me. Then I heard her ask if she would like to make a donation to St. Jude's hospital...Now, I have been asked that question, or some similar question, many times at Toys r Us or Safeway, and to be honest I have always said "not today." I will never say that again when it comes to any donation to a children's hospital. So, when my turn came, and I was asked this question, I had to go into specifics about our story and told her I would love to make a donation today. This woman started to cry and came around the counter and gave me a hug.....a complete stranger. She said I have to hug you because I know hugs are what you really need right now. I just thought that was so great.....and its true.
We got through our long day and Ashton was so happy to be home, he was in such a great mood. He has gotten back his sense of humor and his wit, he is being really funny lately.
Shortly after we got home, a dinner arrived again at the door. We are getting so spoiled! Everything we have been brought has been so delicious. Thank you everyone.....
it has really helped to have that, especially after a day like today. :)

Nurse Dori calls for help.

2008-12-02T21:48:00.000-08:00

Today Pat attempted to go back to work....it failed. Cassidy stayed home from school
with a sore throat and fever of 102, so I was pretty much running around crazy taking care of everyone. Also, I had to get a flu shot at 9 am, which was complicating my morning some. I did get the shot though, we all need to be sure to get them because Ashton can get very sick from us
if we come down with something like the flu during his treatment. A little before
nine, the coordinator from "rehab without walls" called and said she was on her way and was just making sure my husband was home to sign the papers because he was the insurer. I was immediatly on the phone begging Pat to come home. I was already giving him a hard time about going back when so much was going on, but the rehab papers were the real legitimate reason
to get him home. He got home by 11:30, just in time for our appointment...Thanks Phil for being so understanding!! :) So, there wasn't any real rehab for today, just the documents and the scheduling. We are set up for speech tomorrow, Thurs, and Friday. Physical therapy and occupational therapy start Friday. Tomorrow we have another big day up at Stanford. More meetings with the oncology team and a meeting with the dr. who will be giving the radiation.

I was having a really good day until I decided to scroll down "my favorite's" section of my computer. I came across a blog done by an acquaintance from high school named Dino.
I started reading his blog in August, after I saw his obituary in the news paper. He died
of Cancer just about 3 months after being diagnosed. This was another incident where I was so touched by his cancer story and just couldn't get it out of my mind. I saved his blog for if I ever wanted to go back, but I really didn't think about how I would be doing a cancer blog just a few months after his death. This has really gotten me into a funk tonight because he was so positive, had so many people pushing for him and praying but the outcome didn't turn out they way they wanted. So, seeing these types of things just get to me....I know our situations are much different, but in a way it's like, are they really? We just don't know for sure and that is the
real kicker for me....not knowing. I'm a bit of a control freak and not having control over this cancer scares me.

Small sighs of relief.

2008-12-01T20:55:00.000-08:00

We started out early today, super early. We left the house at 6:45 and got to Stanford about an hour later. First thing we had to do was a C.T. scan to check Ashton's brain at the surgery site
and for swelling. This time around Ashton wasn't too thrilled about it so they let me lay on the table with him....whatever works, right? Afterwards, we had breakfast and then had a huge break between appointments so we strolled Ashton around the hospital, showing him things he hadn't seen before. They have
this great train for kids to play with right outside of the Center for Cancer and Blood diseases. Every time I would walk by that train, when Ashton was up in a hospital bed, I wished he could see it. We checked that out for a bit, saw a friend I made during our stay, and just walked the halls. Then it was time for the oncology appt. Ashton has the best team of Dr's, I feel so lucky.
His dr. let us know that she had viewed his C.T. scan from earlier. She said it looked wonderful, that if you didn't know he had just had brain surgery, you really wouldn't be able to tell. That made me feel so great! The last appointment we had was with Dr. Edwards, the neuro-surgeon.
His nurse clipped some of Ashton's stitches because they were a bit tight and hadn't disolved yet. He did fine with that, was a little scared but held still for her. Dr. Edwards told us that we didn't need to worry about his brain swelling anymore. At first, it was something to be concerned about, but the C.T. showed his brain is healing and has no sign of pressure. HOORAY!! That was one of my big fears.....so that is one of my small sighs of relief. The other good news is he noticed Ashton's speech was really good. He said that means he should regain his balance rather quickly. Your speech and balance are controlled by the same part of the brain, so that was wonderful to hear....I can't wait for him to walk! He did say that one of the last things to get better would be his face droop. That is due to the fact that the tumor was growing right on that part of the brain. Thats ok...I can deal with that. My final small sigh is his incision is healed, he can have a bath, he shouldn't be laying in bed all day, and he wants him to get out, be around friends and get motivated and stimulated! Yippee! His next appointments are Wednesday. He has another Oncology appointment then later he has an appointment with the dr. who will be giving him his radiation. For now though, he is just chugging right along, making progress and moving forward everyday. Go Ashton, we love you buddy!!!!

Sweet kisses and a Christmas Tree.

2008-11-30T20:42:00.000-08:00

I just tucked Ashton into to bed about an hour ago. He loaded me down
with many kisses and hugs before saying goodnight, which is great of course.
He is really starting to get his old "spark" back. He also said something I hadn't
heard for a while..."see you in the morning". I said it back but a flash came over me...
what if I don't? That is happening more and more lately. I know deep down that
I'm sure to see him in the morning, but there is this dread about the future.
What if his brain should swell in the night and we lose him? Will he be here for
another trip to Disneyland this summer? Will he be here next Christmas?
I thought of that today as we went to get our tree. Is this his last trip with us?
I couldn't bear it....I won't be able to do any of our traditions if he is gone. These
are not thoughts I should be having about him...it's just not fair at all!
An oncology nurse practitioner said something to me the other day that made me
feel a bit better. I was asking her about his treatment schedule, letting her know
how I am so anxious to start his treatment because I want to feel like we are doing
something. She said its hard now to even think we will have a handle on things, but
to give it about four months and we should feel that we do. I can't wait to feel like we
have the upper hand....I just can't wait.
Our tree is decorated, I've added a few other things around the house....I even
felt like putting some Christmas music into the cd player as we made our treck up the
mountain to chop down our tree. We do have 2 other kids after all...and they deserve
to have their traditions and pieces of happiness. I even started to get into the
Christmas spirit a bit. We still have to have our normal times...it helps get us
through the tough times.
Ashton is progressing more and more each day still. I was noticing today
that he is starting to look like a little boy sick in bed with a cold or something.
He isn't frozen in one position from neck pain, he is moving around more and his
left side is definitely getting to be more mobile. He still is refusing to practice walking though.
The rehab is set to start this week and I'm excited about that.
We have 3 appointments up at Stanford tomorrow and we have to be there at 7:45
in the morning!! He has a C.T. scan, then a meeting with one of the oncologists and
finally a check- up with the wonderful Dr. Edwards, his surgeon and my hero.
Its a full day but at least its another step forward in the direction I so desperately
want to get started. His treatment and his cure.

Toys R us

2008-11-29T22:10:00.000-08:00

Well, there isn't much to post for today. We had a nice mellow day
at home but we did make a trip to the toy store. I needed to get
Ashton a new means of transportation for when we are cruising through
the hospital corridors. Holding him is beginning to be a bit of a strain
and he tells me a lot that I am hurting him. Obviously I don't mean too
but he is like carrying "dead" weight, he doesn't hold on anymore and I think it
is hurting him as well as me. I was thinking of a wagon but then decided
that would be too hard to load in and out of the car, so I settled on a new
stroller. Whenever we go to toys r us, Ashton has to go back to the bike
section and sit in the black escalade power wheels....Don't know why he
likes that one so much, maybe because the doors open and close, but he
sits in it for as long as I will let him, which has been up to a half hour on one
occasion. Today he kept whispering in my ear that he wanted to see the "motor
cars", thats what he calls them. I took him back and he immediately asked to
get down. I knew what would happen next.....he realized he couldn't walk, yet
again. He started crying so we pulled the car out into the aisle and tried to set
him in it which wasn't good enough for him so he cried more. By this time we
had a full audience of kids and parents looking at us. It probably didn't help
that he refused to wear a beanie cap today and his shaved head and bright
red scar were in plain sight. He got a lot of looks and stares. I knew it would
happen when taking him out and I don't think they are staring in a bad way,
I would stare too because I would feel bad for any child I saw who looked like
they had something terrible happen, and was crying in the aisle because he
couldn't get into the "motor car" by himself. He will one day though and
when that day comes, I'll let him sit in one for an hour if he wants.

His happy face.

2008-11-28T21:43:00.000-08:00

My mom posted this photo of Ashton. This
is the one we kept taped to his bed in the hospital for
everyone to see. It is actually really hard for me to
look at photo's of him right now without breaking down.
It is so hard to see him happy and "normal". I have
been having a really rough day, actually all days are
rough, but not usually until the evening when he has gone
to sleep. Today I just can't help but cry. I think the severity
of the situation is really sinking in....sort of like I am over the
shock of it and now am coming to terms with how tremendous
this all is. People have said how we are doing such a good
job, and how strong we are, and I have told them they would
do the same if they were faced with having a child with cancer.
But the truth is, I'm really not that strong. I cry ALOT.
I catch myself not thinking of it and maybe laughing at a
joke or something on T.V. and then it hits me and I remember
all over again.....my baby has cancer, my sweet boy who I
never thought I deserved because he was just too sweet and loving
has cancer. How can this be happening? I used to always tell
myself, when things were hard and kids were mis-behaving, that
it could be worse, at least I don't have a child with cancer. I swear,
I would say that all the time. And now I do. I am so anxious to
start his treatment and be on the road to recovery. This holiday weekend
has been too long and I'm dwelling too much. I also wish I could
get into the spirit of the holidays and decorate a tree, but there is a
black cloud over me and I just know I can't be feeling happy right
now, which isn't fair to my other kids. I'll go through the motions of
Christmas but this year just won't be the same.

Thanksgiving gift.

2008-11-27T21:06:00.000-08:00

Before any of this happened to Ashton, he had been asking for
a Black n Decker power tool bench (for kids) that he had seen
advertised on T.V. When he see's something he likes he will
let us know about it over and over and over. My parents were planning on
buying it for him for Christmas. When Ashton was in the hospital
they decided to get it for him early, for when he came home.
We've been home a week and he hasn't show any interest in playing
with it. How can he when one side of his body doesn't work right
and he can't stand up to play. We think it will be an excellent tool
to use with his physical therapy, and today we were proven right.
This afternoon Ashton actually wanted to go outside so I put
his sweatshirt on, prepared to go on a little walk. He asked
for his scooter, but when he tried to stand on it he got really frustrated.
We walked a bit with my family, but then he wanted to go back inside
and go to bed. Instead of bed I thought I would try the tool bench.
We had placed a small stool by it that is just the right height
for sitting and working with the tools. He surprised us SO much.
His face lit up and he was so excited! He sat at that bench for
at least twenty minutes and played away! He even used his "sad"
hand to help hold down the power saw....he did this over and over.
I also let go of him for 30 seconds or so and he had good control of his
back, he didn't fall over. What strength! The look on his face made my and the
rest of my families day. To think, exactly 2 weeks ago
he had major brain surgery and today on Thanksgiving, he gave us a
gift we certainly will never forget.

Thankfulness

2008-11-26T21:07:00.000-08:00

Obviously our family has so much to be thankful for this Thanksgiving.
Besides being thankful that Ashton is still with us there are alot of
other emotions going on in my chaotic brain right now. Anger that
this happend to him in the first place, guilt that it had to get to the point
it did, and overwhelming sadness. Sometimes I think about him a few weeks
ago, running, jumping, smiling, laughing, riding his bike, and just being a
regular kid. It just breaks my heart. He is such a different boy right now.
I know that will change, but its really hard for me to imagine. I just wish
his hair would grow back, his lopsided smile would miraculously fix itself and
next time he wakes in the morning, looks at me and says "let's get up now, mommy", he really will be able to get up instead of realizing he can't and crying, like he did yesterday.
Through out his ordeal in the hospital, we had taped a photo of his adorable
smiling face for every nurse and dr. to see. I wanted them to see how bright
and shining he was before his emergency...I wanted them to know him before
the tubes and wires.

Back to being thankful...Pat and Ashton and I took a trip to the Dominican E.R. today
to give a huge "thanks" to two of the best nurses at the hospital...(you know who
you are) It felt so good to be able to do that. Ashton wasn't in the most perky
of moods, but they got to see him and know that what they do does make a huge
difference. A thousand thanks to you two, and the numerous other nurses and dr's
that helped stabilize him that day. This year, Thanksgiving has a whole new meaning.

What a day!

2008-11-25T21:24:00.000-08:00

Ashton had his surgery today and did wonderfully. He now has his port and it
is located just above his left nipple. Looks a little strange, but the dr's said it should
be less noticeable once he gains some weight. He IS really skinny now and that is
one of my big worries because I know he will lose alot more weight once he starts
treatment. The port is so important though because it means they have access to
one major line for all his chemo and any blood work they may need. No more trying
to find a vein! He looks like a pin cushin as it is right now. I was noticing tonight
that there isn't one place on his body that doesn't have a bruise, scratch, pin prick,
stitch or adhesive tape mark. He really has been through it all. The dr. told us,
NO MORE SURGERIES! She said we are over a major hump so I'm feeling
pretty good! They also did a lumbar puncture today to test his spinal fluid for
any cancer cells floating around. They told me they are almost certain there will
be some because there are a few tumors in his spine already. This test just gives them the
"base" of what to go on regarding the treatment. They will do more lumbar punctures
in the future, during treatment, to check for cell's and if it is clear, then that means things
are working! So, I was told today to expect to start Radiation in about 2 weeks. That means
this Christmas our little guy may be feeling pretty sick, but it's important to start right
away because his tumors are aggressive.

I'm noticing lately that Ashton seems to be depressed. He is really bummed out
about not being able to do things and from the pain of the surgeries. I told the
dr's and they said that can happen. He does laugh though, mostly to spongebob or
his brother Carter, but he is also really quiet and withdrawn. This of course makes
me feel so bad and I think I need to get him together with his buddies or just take him
on walks in the fresh air. I really need to get him to want to walk again, as it is right now he
doesn't think he can, so he doesn't want to try.

So touched.

2008-11-24T20:35:00.000-08:00

We started the day with our first Occupational therapy appointment
at Dominican Rehab. center. It didn't go over very well, but thats to
be expected. Ashton just cried the whole time and told us he wanted
to go home over and over. We didn't stay long but we made another
appointment for the therapist to come to our home. We are still
waiting to hear back from Rehab without walls and once we do we will
cancel the appointments with Dominican. After rehab, we went by
Ashtons Pediatrician's office, I wanted to surprise her with a visit.
She had rushed over to the E.R. when we had our huge emergency
and comforted me and tried to help with the other doctors there any way she
could. I wanted her to see Ashton, and to know that he was ok. Unfortunately
she wasn't in the office until Wednesday, so we will try back then. We
have another therapy appt. that day, so it will work out well. Then we made
a stop at Ashton's great-grandma's house. She is in a wheel chair and can't walk
stairs anymore, so there would be no way for her to see him unless we
went to see her. She was very surprised and happy to see us and it was a nice visit. So I guess
we had a full day of outings. It felt pretty good to run around a bit, we've
been cooped up in the house and before that the hospital, so today felt
a little more like "normal".

I wanted to express how completely touched I am at the out-pouring of
support and kindness from our friends, neighbors, and community.
I am truly blown away! We are so blessed to have such great people
surrounding us and holding us up when we are at our deepest down.
I really can't put into words how much everyone's well wishes and
calls, dinners ,email's, and visits mean to us. I read each and every
email and facebook message...Hi Facebook friends!...and even though
I don't always answer them, they mean so much to me and I truly
feel better after having read them. So, don't be shy everyone...
we need you in more ways you will ever know.

P.S.
Ashton has surgery tomorrow at 11:30 at Stanford to have
his port placed. Please continue those thoughts and prayers
as our little fighter embarks on the next chapter of his long,
long journey.

Amazing Grace.

2008-11-23T17:31:00.000-08:00

Today was a good day, a real good day. Ashton woke and wanted to come into the living room
instead of staying in bed. I take that as a good sign. He does seem a little depressed though.
I don't blame him. One day he fell asleep and the next he woke up with tubes and wires attached and can't do all the things he used to do. I wonder what he thinks happened.

About 6 or 7 years ago my older son, Carter, played baseball and had an amazing
coach who was the most positive and nicest person. His son was also on the team.
At the end of the season we found out that this boy had had brain cancer when he
was younger. I was so interested and amazed with this family and I needed to know
about it because it just touched me so much. This boy's mother's name is Grace.
She told us his whole story and I was just in awe at how well he was doing and
how the family seemed to cherish every moment with their son. While talking
with Grace I found out she was going to school to get her nursing degree. She
had wanted to work with other children battling cancer. I mentioned how I had
always wanted to be a nurse and she said I should go for it now, that is wasn't too
late. I would see her from time to time and ask her how school was going and
she always said it was going great and she just loved it. I decided to try and go
back, I signed up for a couple of classes at Cabrillo, but shortly after I became
pregnant with Ashton, so I dropped them. I remember seeing her at some school
function and letting her know that I was pregnant and was putting nursing
on the back burner. By this time she was almost done and so close to working
in the field of her dreams. Once again, I would see her from time to time and
ask her about work, etc. On November 12th, the worst day of my life, she
was one of the first people who popped into my mind. I tried and tried to call her only
to get a busy signal. Finally about 3 days after Ashton's surgery, I got her
machine and left her a detailed message about what we were going through.
She called back about 5 min. later and was absolutely shocked to find my family
was going through the same things hers did. She came to visit the next day, brought
us a backpack full of goodies for the kids to do and lent me her laptop so I could
post on this blog. She is the one who actually set this blog up for me and posted
the article about helping families with cancer. She came by this morning and
we all had a nice long talk. I feel so blessed to know this woman and to be able
to have her in my life at a time like this. Her son had the same cancer, at the
same age as Ashton and is happy and doing well. He just celebrated 10 years
cancer free. We even have the same Oncologist, Dr. Fisher.
Thank you for being there for us Grace, you're amazing.

A better day.

2008-11-22T21:03:00.000-08:00

Today Ashton woke with his left eye completely swollen shut. He spent most
of the morning grumpy and frustrated because he couldn't see. I called Stanford
and was told pretty much what I expected. When he had the drain removed from
his brain, some of the fluid leaked out under his skin. Since he didn't sleep in a
hospital bed, propped up just right, the fluid pooled around his eye and caused the
swelling. Poor little guy, as if he doesn't have enough going on with the weakness
on that side, now his eye is swollen shut. It took almost all day to get back to normal.
We did physical therapy with him ourselves today and he wasn't too into it. The
second time we tried he did a bit better, its as if he is getting stronger little by little.
We have started calling his strong hand his "happy" hand and his weak hand
his "sad' hand. We tell him he needs to use his sad hand more to make it
happy like his other one....I think he really understands this. By the end of
this evening, he was waving and giving high fives with his sad hand. I bet tomorrow
will be even better!

Bitter-sweet homecoming

2008-11-21T21:18:00.000-08:00

So today the hospital sent us home...I wish they would have told us what to
expect. It was really hard to walk in and see all of Ashton's toys and things
sitting just like they were when we left and knowing he can't play with them
like he used to. I also wish they would have explained to him that he wouldn't be
able to do everything for himself just because he was home. Dinner was the hardest
part. We got two delicious pizza's delivered, thank you Denise, and they happen
to be from Ashton's favorite pizza place, Tony and Alba's. I thought I would just
feed him sitting up in bed but he insisted on sitting at the table. And in my lap
wasn't good enough, he had to be in his booster. Once we had him balanced
on his chair--I have to hold him steady or he will fall over--he cried because he
was wearing a diaper and he wanted to wear his big boy pants and his jeans.
He has always wanted to wear jeans when eating, he doesn't like sitting on crumbs.
We finally got him all dressed and situated and once again he insisted on trying to
feed himself with a fork, which wasn't going over too well. He was having such trouble
getting his cut up pizza on the fork and it was so pathetic to watch. I feel like I am living
some sad, sad, movie....but its not fiction, its my life now. We are set up to get some
physical and ocupational therapy from rehab without walls. They come into the home
and do all the work in his own environment, they even will take them to the park to work.
Where ever he is used to going, they can work with him. I have been crying most of
this evening and I can't seem to shake it. I just hope I am doing everything right here and I have asked a nurse friend of mine to come over and just help for a bit to make sure I am
doing ok. As for Ashton, I was so proud of him tonight. Just the fact that he wanted to feed
himself and be so independent shows me he is a true fighter and he is going to beat this
cancer.

Another thing...

2008-11-20T21:53:00.000-08:00

Today we had a long talk with on of the surgeons that worked on Ashton. She has always been so sweet to Ashton and I thanked her for being so gentle. She told me that children like him always get to her because they always get a few a year that don't make it. I asked her what would have happened if I had left the Dominican E.R. and he had started to posture at home or in the car ride home. She said it would have probably been too late, that he would have died. She told me we were so lucky to live so close and that recently there was a boy from the central valley airlifted in with the same tumor and he didn't make it because the flight was too long. That just breaks my heart. She also said that the two bags of IV the dr. gave Ashton in the hospital most likely caused the fluid to build up in his brain very fast which caused his emergency. The "what if's" will haunt me forever. I feel so blessed.

A hard day...

2008-11-20T21:19:00.000-08:00

Today Ashton woke and was exceptionally grumpy. Nothing we could do
would calm him down, the only thing that worked was my lying with him in bed.
The team of neuro-surgeons came in early, as they do every morning, but this morning
they said they thought we could go home tomorrow. I was a bit apprehensive because
I feel like something terrible will happen to him again if he isn't being constantly monitored.
They reassured me he would be able to heal better in his own environment and we can
continue his Physical and occupational therapy at Dominican. He had a bath at about noon and then went to the gym down the hall for some physical therapy. At one point the therapist wanted him to walk to me-with help-and as he came towards me in his little hospital gown, I couldn't help but notice how he has lost so much muscle tone in his skinny legs. It has only been a week since surgery, but he has changed so much. There was also a full length mirror along one wall and I asked the therapist to make sure he didn't catch a glimpse of himself. I think it would scare him too much. He has noticed his hair is gone, but I've told him it will grow back real soon. Thank goodness he won't be able to see the large incision that runs down the back of his head. I think his therapy wore him out because he just cried and cried the rest of the day. At about dinner time I noticed his left eye--the side that is paralyzed--was buldgeing a bit. The I noticed the left side of his head was a bit swollen and when I put my fingers on it, it felt squishy. I immediately called the nurse who also noticed these new problems and she paged the dr. right away. I started to feel that horrible feeling in the pit of my stomach again, like something was really, really wrong. I was sure he would be sent to CT and we would find out his brain was swelling again and he would have to go to surgery. After what seemed like an hour the dr. showed up and examined him. She pointed out that his eye that is bigger is on the side of his face that has no movement and it was open wider as a result. The puffiness on his scalp was caused by the tube that was in his brain draining fluid. When it was pulled out, a bit of fluid must have gotten under his scalp and since he prefers to lay on one side, it collected there. I was so relieved. The events that happened last Wednesday traumatized me so much, I cant shake the feeling that doom is just around the corner. So, we are leaving tomorrow morning, It will be a long weekend of watching and worrying. Ashton is so happy to go home, he misses his brother and sister so much. He just lights up when they come visit. Speaking of visiting, we had a special visitor come by last night, Elmo. Ashton loved seeing him and had a huge smile the whole time he was here, this place is so wonderful. Ashton is sleeping soundly now hopefully dreaming of sleeping in his own bed, finally.

The day Ashton flew in a helicopter.

2008-11-19T22:49:00.000-08:00

As many of you already know, Ashton had been throwing up off and on for 6 months, with no other symptoms. Dr's would just say it was a virus. I started doing some research and thought he may have reflux disease, or GERD. The dr. put him on Prevacid and said come back in two weeks if things don't get any better. This was about 4 weeks ago. Two weeks ago I took him back and brought a journal of dates and times Ashton threw up. The real worrisome time was when
he seemed to be having a nightmare in the night and rolled over and vomit just ran out of his mouth. He never woke up, even through the bath we gave him. I thought he must really be tired because he recently stopped taking naps and there was the time change. Anyway, the dr. noticed that many of the times he threw up were in the morning. She asked if he had been complaining of headaches because throwing up in the morning could be a sign of brain swelling. She thought it would be a good idea for him to get a C.T. scan, but thought he should have an upper G.I. to test for reflux first. He was scheduled for the G.I. on Thurs. the 13th. On Wed. the 12 he had been throwing up all morning so I called my husband Pat and asked him to come home. I also called our Pediatrician and said I would be taking Ashton in to the Dominican E.R. for an I.V. because he just couldn't keep anything down. We got to the E.R. at about 9:30am and Ashton was so tired. He slept most of the time we were there. Pat and I waited in the room for some blood test results and ate lunch and thought everything was normal, but it wasn't. The dr. came back and said the blood tests were normal and he would need a urine sample before we left, but to still finish the I.V. We were about to be discharged but still needed to get the urine sample so I tickled Ashtons foot trying to wake him up. Thats when I noticed he was in a really deep sleep, a sleep I have never seen any of my kids be in. My tickling his foot made him start to "posture" but the nurse in the room said he was having a seizure. He arched his back and his tongue came out and his eyes rolled around in his head. I said to the nurse that something was wrong, he had never done that before and I looked at Pat and he was crying. Thats when I knew something was really wrong. The nurse hit the panic button but it seemed like minutes before anyone came. Pat actually had to yell down the hall for help. They rushed his bed down to the main part of the er where he was hooked up to various machines to take his vitals. Then they rushed him in to C.T. This whole time I felt like my insides were twisting and I was in some sort of crazy dream, I can't even explain the way I was feeling. It was the worst feeling in the world. After the C.T. they rushed him once again back to the ER where the DR. who originally was going to release Ashton, told me the news. He had a large mass in his brain. At this point Ashton started to Posture again and they had to put a breathing tube in him. The whole er was working on him....I had 2 chaplain by my side like grim reapers. Thats just how I felt then, now I think back and was grateful for them. The dr. got on the phone with Stanford and arranged for air transport. Neither Pat or I could go with him so we said our goodbyes and headed out on the longest car ride of our lives. When we reached the summit of 17 we saw the most touching sight. Off to the left of us, the sun was setting and the sky was a beautiful pink color, but up there in those beautiful clouds was the sillouette of our Ashtons helicopter, his very first ride. When we got to LPCH we got to see Ashton, he was basically in a coma and they had put a tube in his brain to drain the fluid. They took him to get an MRI and scheduled him for surgery with Dr. Edwards, my hero, the next morning. I could hardly sleep. The next morning we once again kissed him goodbye knowing the risks of brain surgery. While he was in surgery, another Neuro-surgeon came to us with the results of the MRI, it had spread to his spine and it was Cancer.
Medulloblastoma. Ashton did wonderful in surgery. He is still coming out of the effects of having the tumor on his brain stem and having it cut out so close. He is weak on the left side and his face sorta looks like he had a stroke, but he walked today, with help, and today, he smiled and laughed for the first time since his heroic ride in the helicopter.

How to help a family that has a child fighting cancer.

2008-11-18T13:29:00.000-08:00

Here is an article with ideas of how friends and family can help Ashton and his family.

http://www.acor.org/ped-onc/cfissues/dodont.html

We wish you all the best.