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.
Wednesday, December 31, 2008
Saturday, December 27, 2008
Quick update.
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!
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!
Friday, December 19, 2008
We survived the first week.
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!
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!
Wednesday, December 17, 2008
A Special Surprise.
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.
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.
Tuesday, December 16, 2008
Eating problems continue.
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.
Monday, December 15, 2008
Up's and Down's
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.
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.
Friday, December 12, 2008
The Beginning.
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.
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.
Thursday, December 11, 2008
Tomorrow.
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!
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!
Tuesday, December 9, 2008
Motor cars, Trains, and Helicopters.
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.
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.
Monday, December 8, 2008
Tiny Footprints.
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.
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.
Sunday, December 7, 2008
Not much to say.
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!
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!
Saturday, December 6, 2008
The Stupid Ladies.
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.
Friday, December 5, 2008
Butt kickin' time.
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.
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.
Thursday, December 4, 2008
A play date and Hope.
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 :)
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 :)
Wednesday, December 3, 2008
Hair and the White Church.
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. :)
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. :)
Tuesday, December 2, 2008
Nurse Dori calls for help.
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.
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.
Monday, December 1, 2008
Small sighs of relief.
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!!!!
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!!!!
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