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.
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Hi Dori and family,
I don't think we know each other, although we know some of the same people. My Mom works with Amy Ivey. Amy sent an email a while back asking for good thoughts and prayers for you, Ashton and your whole family. Your story has really touched me, as I have a son who has also been very sick. My son is 22 mos. old. He does not have cancer but has many other medical issues. We have been consistently in and out of the hospital since he was 7 mos. old. We went to Lucille Packard for neurosurgery when he was 11 mos. due to Hydrocephalus. He also has a seizure disorder that has caused us to spend many, many hours in pediatric hospitals and ERs. I thought I would let you know, I would be more than happy to chat with you if you ever need to talk to someone who can relate to some of the emotions and situations you are going through. Although our boys have different issues, many of the things you bring up in our wonderfully written blogs have really hit home with me. My email is: melimayes@yahoo.com. If you email, I can give you my phone number too. It sounds like you have an amazing support system through family and friends. This is essential, as I'm sure you realize. I am so thankful to have so many wonderful people in my life as well. However, sometimes you still feel like you are going through this alone. I have found it comforting to talk to people who have had some of the same emotions, who have dealt with so many different doctors, and who knows how it feels to have seen their own precious baby go through such difficult times. I'm here if you would like to contact me. I also have a Facebook page.
Take care. My thoughts and prayers are with your family. I wish you Happy Holidays and much health in 2009.
Sincerely, Melissa Mayes-Goss
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