The last few days, Ashton has been suffering from what I call "the downs".
He just wants to lay in bed...doesn't want to walk anywhere, he's looking pretty
pale, and he isn't wanting to eat much at all. Tonight he went to bed a little after 5pm
and threw up right before. Of course I called the dr. and she said what he is doing is
completely normal for what he has been through. He is still feeling the effects of the
radiation and that combined with his low red counts is making him have no energy.
The doctor thinks he can go the weekend without a transfusion, we have an appt.
Monday. She seems to think he may not even need one on Monday, but I hope he
gets one. It would be nice to see him perk up a bit. I really wanted to take him to the park
tomorrow but its looking like we will spend the day indoors. This will all wear off eventually....probably right in time for him to start chemo. Then that will knock him down again.
The dr. told me tonight on the phone that its going to be a rough 6 months. I can't even imagine.
Ashton said the sweetest thing to me yesterday. I was complaining of a stomach ache and he
patted my back and said "its ok mommy, I'll take care of you." I thought that was just adorable and wanted to share it. With all he is going through and how bad he is feeling, he thought of me and wanted me to be alright. He has such a sweet heart.
Thursday, February 26, 2009
Monday, February 23, 2009
The visit today.
We went up to Stanford today for Ashton's regular check up. He is doing wonderfully.
We got to talk about what these tests all mean for Ashton and his prognosis. His Dr.s informed us that this is the best place we can be in at this time.....not everyone has a clear MRI at this point, so Ashton is very lucky. His prognosis is better now...instead of it being 60-75%, it is more at the 75% range...which is excellent, I think. Those are just numbers anyway. His doctors all have very high hopes for him and seeing them and how positive they are just helps me feel so much better. I will still remain apprehensive....I will forever I think. This is not over by any means. We still have a long 6 month road of chemo to travel and then after that, who knows. Hopefully that will be the end but he will have to have MRI's every 3 months and I know those will be times of high anxiety. I know from talking to other people and from talking to the dr.s today that anxiety will be a big part of my life once those MRI's roll around. It is just so wonderful to get some good news, finally. In the beginning it seemed like every day there was more bad stuff to hear. Now I can finally breath a huge sigh of relief and know that for now, Ashton is OK.
I asked if I can officially say that Ashton is cancer free. The dr. told me that I can say there isn't any cancer that is detectable by them. She said "is there a cancer cell left floating around somewhere? We just don't know. That is why we do the chemo." That's fine with me!
I also asked about Ashton's left eye. His left side is still very weak, although it gets stronger each day, and his left eye is still turned in a bit. She said it should continue to get better but it might not ever get back to normal. She also said he may have some double vision or have some blurry spots. He hasn't complained about not seeing things clearly and I sure hope that isn't the case. But, if that's all we have to worry about in the future, again, that's alright with me.
We start Chemo March 1oth. Ashton (and I) will be admitted for a 2 night stay and leave on the 3rd day of his 28 day cycle. On day 8 we have to come in for him to get just a small syringe of chemo, which takes a few seconds. After that, its just clinic visits each week until we start all over again with the next 28 day cycle. Each month will be the same....2 night say over and a little chemo on day 8. This will go on until about September. Please continue to think of Ashton and pray that he gets through this chemo alright. Hearing loss will be a big side effect so please keep those positive vibes coming...we appreciate it all!
We got to talk about what these tests all mean for Ashton and his prognosis. His Dr.s informed us that this is the best place we can be in at this time.....not everyone has a clear MRI at this point, so Ashton is very lucky. His prognosis is better now...instead of it being 60-75%, it is more at the 75% range...which is excellent, I think. Those are just numbers anyway. His doctors all have very high hopes for him and seeing them and how positive they are just helps me feel so much better. I will still remain apprehensive....I will forever I think. This is not over by any means. We still have a long 6 month road of chemo to travel and then after that, who knows. Hopefully that will be the end but he will have to have MRI's every 3 months and I know those will be times of high anxiety. I know from talking to other people and from talking to the dr.s today that anxiety will be a big part of my life once those MRI's roll around. It is just so wonderful to get some good news, finally. In the beginning it seemed like every day there was more bad stuff to hear. Now I can finally breath a huge sigh of relief and know that for now, Ashton is OK.
I asked if I can officially say that Ashton is cancer free. The dr. told me that I can say there isn't any cancer that is detectable by them. She said "is there a cancer cell left floating around somewhere? We just don't know. That is why we do the chemo." That's fine with me!
I also asked about Ashton's left eye. His left side is still very weak, although it gets stronger each day, and his left eye is still turned in a bit. She said it should continue to get better but it might not ever get back to normal. She also said he may have some double vision or have some blurry spots. He hasn't complained about not seeing things clearly and I sure hope that isn't the case. But, if that's all we have to worry about in the future, again, that's alright with me.
We start Chemo March 1oth. Ashton (and I) will be admitted for a 2 night stay and leave on the 3rd day of his 28 day cycle. On day 8 we have to come in for him to get just a small syringe of chemo, which takes a few seconds. After that, its just clinic visits each week until we start all over again with the next 28 day cycle. Each month will be the same....2 night say over and a little chemo on day 8. This will go on until about September. Please continue to think of Ashton and pray that he gets through this chemo alright. Hearing loss will be a big side effect so please keep those positive vibes coming...we appreciate it all!
3 for 3.
Ok, the doctor just called. The neuro-pathologist read the MRI and there is absolutely nothing there!! No tumors!! No residual.....nothing!! I am just amazed and so, so happy. We are going out to Stanford this afternoon to talk about what this all means, but the dr. informed us it is very, very good. We have kicked this cancers butt!! Now, we have to make sure it stays away.
Keep those prayers and positive thoughts going for us...I truly believe they have had something to do with this wonderful outcome.
Thank you all!!!!
Keep those prayers and positive thoughts going for us...I truly believe they have had something to do with this wonderful outcome.
Thank you all!!!!
Friday, February 20, 2009
The MRI.
Today Ashton had his MRI. The day was kinda crazy, we were stuck waiting to go in an extra 2 hours and Ashton was hungry. He did great though....after waking up was a different story. He cried and complained most of the way home. I think it was because he was asleep for so long, almost 2 hours. I had no idea MRI's could take so long!
A few minutes ago Ashtons dr. called with the results of what she could see. She said we still have to wait for the final word from the pathologist and that would be Monday morning, but,
from what she could see, there is NO SIGN OF CANCER LEFT in the brain and spine!!!!!!!!
I am in shock. This is just the best news we can get. Even if the pathologist see's something, its going to be so small. All the lesions that were through-out his brain and spine are not visible at all.
We are just over-joyed. Thats 3 for 3!! Each test this week has given us the results we have been so longing for. I will definitely update everyone on Monday when I find out the official word! :)
A few minutes ago Ashtons dr. called with the results of what she could see. She said we still have to wait for the final word from the pathologist and that would be Monday morning, but,
from what she could see, there is NO SIGN OF CANCER LEFT in the brain and spine!!!!!!!!
I am in shock. This is just the best news we can get. Even if the pathologist see's something, its going to be so small. All the lesions that were through-out his brain and spine are not visible at all.
We are just over-joyed. Thats 3 for 3!! Each test this week has given us the results we have been so longing for. I will definitely update everyone on Monday when I find out the official word! :)
Thursday, February 19, 2009
2 out of 3.
This week has been a busy one...busy and full of stress. On Monday Ashton had an audiogram, a test to check if his hearing was affected at all from the radiation. We got the results of that immediately and his hearing was completely perfect. That was wonderful news to us because his last test was a little iffy, plus I was worried all those radiation beams were doing some sort of damage. He will continue to have the audiograms every month during his chemo because there is a chemo drug that he will be receiving that causes hearing loss.
Tuesday morning Ashton went in for a lumbar puncture. They pull spinal fluid to check for cancer cells. The very first LP he had was way back before radiation, the day he got his port put in. The result of that test was what we expected...there were cancer cells present and there were A LOT. So, of course I have been very nervous about finding out the results of Tuesdays test. The dr. told me this morning that we may not know the results until Monday, then we would also receive the results of the MRI he is having tomorrow morning. The wait has been so hard, manageable but hard. I have been trying to stay optimistic and telling myself I won't worry until I find out there is reason to. Tuesday night, Ashton's dr told me she was really hoping the test this time will be clear. She said she wouldn't be surprised though if there were some cells left because there were so many in the first place. She also said it wouldn't be the end of the world if there were still cells present, he will still be getting the chemo and that should take care of any lingering ones.
S0, today as I was having a nice lunch at home with a friend, the dr. called. I figured she was calling about some scheduling issues for tomorrow. I had just had a conversation with her a couple of hours earlier and that was when she told me we may not have the results until Monday. She mentioned that she would be checking with pathology this afternoon, but if they weren't back yet then they wouldn't be until Monday. She called with great news....there were NO cancer cells left!!! I couldn't believe it....I still can't. I feel like we are the luckiest people in the world right now. All the treatment he has been having so far has been working! HOORAY!
Now I feel so hopeful about tomorrow's MRI. Please continue to keep Ashton in your thoughts and prayers...we are so grateful! :)
Tuesday morning Ashton went in for a lumbar puncture. They pull spinal fluid to check for cancer cells. The very first LP he had was way back before radiation, the day he got his port put in. The result of that test was what we expected...there were cancer cells present and there were A LOT. So, of course I have been very nervous about finding out the results of Tuesdays test. The dr. told me this morning that we may not know the results until Monday, then we would also receive the results of the MRI he is having tomorrow morning. The wait has been so hard, manageable but hard. I have been trying to stay optimistic and telling myself I won't worry until I find out there is reason to. Tuesday night, Ashton's dr told me she was really hoping the test this time will be clear. She said she wouldn't be surprised though if there were some cells left because there were so many in the first place. She also said it wouldn't be the end of the world if there were still cells present, he will still be getting the chemo and that should take care of any lingering ones.
S0, today as I was having a nice lunch at home with a friend, the dr. called. I figured she was calling about some scheduling issues for tomorrow. I had just had a conversation with her a couple of hours earlier and that was when she told me we may not have the results until Monday. She mentioned that she would be checking with pathology this afternoon, but if they weren't back yet then they wouldn't be until Monday. She called with great news....there were NO cancer cells left!!! I couldn't believe it....I still can't. I feel like we are the luckiest people in the world right now. All the treatment he has been having so far has been working! HOORAY!
Now I feel so hopeful about tomorrow's MRI. Please continue to keep Ashton in your thoughts and prayers...we are so grateful! :)
Wednesday, February 11, 2009
Enjoying the break.
Today was the first day since I can remember that Ashton hasn't thrown up. I'm really hoping this will stick. It is so dang hard to see him sick every morning, especially since that was the problem he had in the first place which led us to this horrible nightmare. Of course I have been worried sick that the vomiting may be a sign that the tumor is returning but the dr.s have reassured me it is completely normal. He is still feeling the effects of radiation and the last doses he received were right on the tumor site so that is one of the main reasons he will feel icky. They also told me, and I'm sorry if I mentioned this before already, but they told us that Ashton will always be a person who throws up easily. Due to the tumor and surgery, he will vomit much more then the normal person does. If my other kids get the stomach flu and throw up a few times, Ashton will get it and vomit over and over. I really feel sad about that because I've told him that his sick feelings will go away soon. Shortly after surgery I told him that it was the bump in his head making him sick and the dr. took it out so he wont throw up anymore. Now I don't know what to say.
It feels so incredibly good to sort of be back to normal day to day life. Of course we have clinic visits once a week, and we had a small scare this weekend. Ashton caught a bug from my other kids and got a fever. We had to take him to the ER at Stanford, which wasn't a very fun experience. They had to poke him a couple of times to test for bacteria in the blood, which he didn't have, of course. They also had to check his white blood cell count to make sure he was able to fight off this virus, and he was ok so we didn't have to be admitted. It is just such a bummer to have to be going through all of this. I have been having some "why him" feelings lately and been feeling pretty sad. I just want this to be all behind us so badly.
Next week is a biggie. On Monday Ashton has a hearing test, on Tuesday he has a lumbar puncture to check his spinal fluid for cancer cells, and Friday is the MRI which will tell us if the tumors are gone. I am scared to death. He will have to be put under for the lumbar puncture and the MRI....poor little guy. I am desperately hoping that his tests will be all clear. Thats what the dr.s really want to see but, we were told last Monday that if there is still cancer in him, they will use that as a baseline for treatment. Meaning, if he isn't all clear, it can still be taken care of with the chemo. He starts his first cycle of chemo on March 10th and he will stay in the hospital for 2 days and 2 nights. Of course I will be staying with him.
Other then all the stressing I am doing, I'm really enjoying this time we have together. Cassidy has just started softball and I can't wait for games to start and for Ashton to be able to come and watch her. I have no idea what the chemo will do to him regarding side effects and such. I do hope he will feel well enough most of the time to enjoy the little things. Please send all the postive thoughts you all can for Ashton to have a clean scan and LP. I will update this blog as soon as we know the results.
It feels so incredibly good to sort of be back to normal day to day life. Of course we have clinic visits once a week, and we had a small scare this weekend. Ashton caught a bug from my other kids and got a fever. We had to take him to the ER at Stanford, which wasn't a very fun experience. They had to poke him a couple of times to test for bacteria in the blood, which he didn't have, of course. They also had to check his white blood cell count to make sure he was able to fight off this virus, and he was ok so we didn't have to be admitted. It is just such a bummer to have to be going through all of this. I have been having some "why him" feelings lately and been feeling pretty sad. I just want this to be all behind us so badly.
Next week is a biggie. On Monday Ashton has a hearing test, on Tuesday he has a lumbar puncture to check his spinal fluid for cancer cells, and Friday is the MRI which will tell us if the tumors are gone. I am scared to death. He will have to be put under for the lumbar puncture and the MRI....poor little guy. I am desperately hoping that his tests will be all clear. Thats what the dr.s really want to see but, we were told last Monday that if there is still cancer in him, they will use that as a baseline for treatment. Meaning, if he isn't all clear, it can still be taken care of with the chemo. He starts his first cycle of chemo on March 10th and he will stay in the hospital for 2 days and 2 nights. Of course I will be staying with him.
Other then all the stressing I am doing, I'm really enjoying this time we have together. Cassidy has just started softball and I can't wait for games to start and for Ashton to be able to come and watch her. I have no idea what the chemo will do to him regarding side effects and such. I do hope he will feel well enough most of the time to enjoy the little things. Please send all the postive thoughts you all can for Ashton to have a clean scan and LP. I will update this blog as soon as we know the results.
Sunday, February 1, 2009
Thank you just isn't enough.
I am sitting here tonight, the night after Ashton's skate night, and am still in awe about how the night went. I really couldn't have asked for it to turn out any better. There were so many people I didn't get a chance to talk to and thank...I'm sorry for that. It was a crazy, crazy, night...in a good way of course. It seemed to go by in a blur and I really wish I had the whole thing from start to finish on video so I could watch it all and catch all the people and things I missed. I hardly could sleep last night. My mind just kept going over and over everything....it still all seems surreal. The people I have around me, who set this whole thing up, you should all be very proud. I know you were really stressed, hoping things would go well. Well, you did it! You all did it with grace and class, and things went so smoothly....It couldn't have been more perfect. A HUGE thank you to you all, from the bottom of my heart.
To the people who came, you have all given me a new found hope. I never really knew how wonderful this community was until now. I knew it was good, knew there are a lot of great people here, but this just blew me away. I will forever cherish all the notes that were written, cards, photos, everything and I can't wait for Ashton to get big enough to really understand how enormous this all was and to tell him it was all for him.
Ashton made it almost the whole night! Hooray! I hardly saw him much at all, he stuck with Pat most of the time, but when I did see him he seemed to really be enjoying himself. I had told him ahead of time that this was a big party just for him and that he may have a lot of people wanting to say hi. I told him to just wave if he felt shy and I think that worked out well. The cutest was how all the kids came up to him wanting to talk. I think he got a real kick out of that.
I really didn't realize how large this would all be. It wasn't until I found out that both the elementary schools sent notices home with everyone, and then the Sentinel did the story. At that point I thought it could go REALLY well. But, a couple of hours before it was to start, I got a call from KION news....they wanted to do a phone interview and send a camera man out to do a small story about us. The did end up interviewing Molly, who did SUCH a great job. If anyone wants to check it out go here.......KION - Monterey, Salinas, Santa Cruz - News Weather-Home
There is a short video and the written story is further down the page. That's when I started to believe that this was really huge. How great, and all for my little guy.
Today, Ashton has been progressing more. He is walking almost everywhere now. He holds on to walls and couches/tables, when possible, but other then that he is on his own. Also, he threw up his feeding tube early this morning which was a really great thing in my opinion. The dr.s didn't want it to come out unless he was eating, but he didn't want to eat because it was there. So today we got the chance to see what would happen, would he eat or not. Well, HE DID!
He had two slices of pizza at a superbowl party we attended and drank a lot of fluid by mouth.
We have to go to LPCH tomorrow for a check up and blood draw and I can't wait to tell his dr.s the progress he made. I'm feeling really confident that he doesn't need a new tube placed. He feels so good without it too. Just another little step forward for my Ashton, who now I am starting to see glimpses of here and there, the Ashton from before, who I had posted a while ago that I was forgetting...he's making his way back. Slowly, but he's making his way back.
To the people who came, you have all given me a new found hope. I never really knew how wonderful this community was until now. I knew it was good, knew there are a lot of great people here, but this just blew me away. I will forever cherish all the notes that were written, cards, photos, everything and I can't wait for Ashton to get big enough to really understand how enormous this all was and to tell him it was all for him.
Ashton made it almost the whole night! Hooray! I hardly saw him much at all, he stuck with Pat most of the time, but when I did see him he seemed to really be enjoying himself. I had told him ahead of time that this was a big party just for him and that he may have a lot of people wanting to say hi. I told him to just wave if he felt shy and I think that worked out well. The cutest was how all the kids came up to him wanting to talk. I think he got a real kick out of that.
I really didn't realize how large this would all be. It wasn't until I found out that both the elementary schools sent notices home with everyone, and then the Sentinel did the story. At that point I thought it could go REALLY well. But, a couple of hours before it was to start, I got a call from KION news....they wanted to do a phone interview and send a camera man out to do a small story about us. The did end up interviewing Molly, who did SUCH a great job. If anyone wants to check it out go here.......KION - Monterey, Salinas, Santa Cruz - News Weather-Home
There is a short video and the written story is further down the page. That's when I started to believe that this was really huge. How great, and all for my little guy.
Today, Ashton has been progressing more. He is walking almost everywhere now. He holds on to walls and couches/tables, when possible, but other then that he is on his own. Also, he threw up his feeding tube early this morning which was a really great thing in my opinion. The dr.s didn't want it to come out unless he was eating, but he didn't want to eat because it was there. So today we got the chance to see what would happen, would he eat or not. Well, HE DID!
He had two slices of pizza at a superbowl party we attended and drank a lot of fluid by mouth.
We have to go to LPCH tomorrow for a check up and blood draw and I can't wait to tell his dr.s the progress he made. I'm feeling really confident that he doesn't need a new tube placed. He feels so good without it too. Just another little step forward for my Ashton, who now I am starting to see glimpses of here and there, the Ashton from before, who I had posted a while ago that I was forgetting...he's making his way back. Slowly, but he's making his way back.
Subscribe to:
Posts (Atom)
