Tube free!

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!

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

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

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!

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

The Holidays...the good and the bad.

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

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

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

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

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

A year ago, already.

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

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