Thursday, March 10, 2011
Thoughts from Christopher
Usually my mom does the posting, but I thought I would give it a go. Here goes. Earlier this week my mom and I went to see Dr. Joyce (the oncologist) about the CT scans of my lungs. There are some spots on the scans that are more than likely tumors. I will get rescanned in about a month. but until then I'm going to California to see my dad's side of the family, and also I'm heading to Fort Benning, GA to see all the stuff that they have there. I will most likely be started on interferon to see if that will help at all. If the scans come back positive I will have surgery to remove the tumors, but I will not do chemo because if it didn't work the first two time it probably wont work the third time. I will however try some homeopathic treatments (my mom's idea). This is all very frightening, but I should not, can not and will not give up EVER! -Chris
Friday, March 4, 2011
No More Chemo
After that lengthy meeting back in February with Christopher's Oncologist, the plan was to finish out the last 3 cycles of Chemo with a different mix of drugs. Reluctantly Chris agreed to at least try one more round and see if he tolerated it any better than the hideous 3rd round. He would than have a chest CT and depending on what that revealed either finish out the protocol or stop.
Thankfully the 4th round was a bit easier on him, as far as nausea and vomiting goes anyway, but not without complications. All things considered, one of his better weeks which may have been due to the abscence of Ifosfamide or just plain Grace.
Still, before the week was over he felt pretty strongly that he had just had his last round of in-patient chemo. He didn't say much about it, just that he came to that decision and was positive that he did not want anymore chemo regardless of what his tests showed.
At his pre-chemo clinic appointment the oncologist told Chris that somehow these kids know when they have had enough and she had learned to respect that rather than try and figure out how and why. She said at this point it is more important for Chris to think about the quality of his life and the things he wants to do. There are other options available to him, such as the chemo pill that he can take at home, that may be easier to tolerate but more importantly lend itself to a more "normal" lifestyle for him. Their preference was that Christopher finish his 6 month/6 rounds of chemo protocol and re-evaluate after the final scans. Oh well...none of this has ever gone "according to plan" . At this point I believe it is out of all our hands and most likely Christopher has a better (deeper) insight into all of this than myself and his Dr.'s. I told him I would back whatever decision he made.
His last bone scan was clear...great news, but there is a possible "issue" with the chest CT he had last week. In typical fashion, in almost a week I have not gotten any answers or even clarification on the results. We have a meeting tomorrow with his oncologist to (hopefully) go over his CT now that it has been reviewed by his thoracic surgeon as well as the other oncologists.
Based on that outcome will also be the discussion on what comes next. Chris is not even sure he wants to do the chemo pill...especially if there is more evidence of disease. He may consider some sort of alternative treatment but as always is just trying to stay with today and not get too far ahead. Admittedly he is much better at that me!
He is very much looking forward to his trip to CA and may even sneak in a trip to the west coast of FL before hand to visit his friend Austin. Somewhere in between that (and video games!) he does manage to get to school. It has been tough for him to keep up with everything between the hospital stays and the obvious negative effects of chemo on a cognitive level, but he trudges on and somehow always gets through another day...but just one at a time.
Please keep the thoughts and prayers coming...they are priceless and a great source of strength and encouragement.
Much love and peace to all,
Patty
Believe it or not I managed to snag George W. away from the Secret Service to take a picture with Christopher. He was very congenial and let Chris know that he admired his strength in fighting such a battle and encouraged him to keep it up. It was a very big moment for this 14 year old and I know that is one day he will always remember!
Thankfully the 4th round was a bit easier on him, as far as nausea and vomiting goes anyway, but not without complications. All things considered, one of his better weeks which may have been due to the abscence of Ifosfamide or just plain Grace.
Still, before the week was over he felt pretty strongly that he had just had his last round of in-patient chemo. He didn't say much about it, just that he came to that decision and was positive that he did not want anymore chemo regardless of what his tests showed.
At his pre-chemo clinic appointment the oncologist told Chris that somehow these kids know when they have had enough and she had learned to respect that rather than try and figure out how and why. She said at this point it is more important for Chris to think about the quality of his life and the things he wants to do. There are other options available to him, such as the chemo pill that he can take at home, that may be easier to tolerate but more importantly lend itself to a more "normal" lifestyle for him. Their preference was that Christopher finish his 6 month/6 rounds of chemo protocol and re-evaluate after the final scans. Oh well...none of this has ever gone "according to plan" . At this point I believe it is out of all our hands and most likely Christopher has a better (deeper) insight into all of this than myself and his Dr.'s. I told him I would back whatever decision he made.
His last bone scan was clear...great news, but there is a possible "issue" with the chest CT he had last week. In typical fashion, in almost a week I have not gotten any answers or even clarification on the results. We have a meeting tomorrow with his oncologist to (hopefully) go over his CT now that it has been reviewed by his thoracic surgeon as well as the other oncologists.
Based on that outcome will also be the discussion on what comes next. Chris is not even sure he wants to do the chemo pill...especially if there is more evidence of disease. He may consider some sort of alternative treatment but as always is just trying to stay with today and not get too far ahead. Admittedly he is much better at that me!
He is very much looking forward to his trip to CA and may even sneak in a trip to the west coast of FL before hand to visit his friend Austin. Somewhere in between that (and video games!) he does manage to get to school. It has been tough for him to keep up with everything between the hospital stays and the obvious negative effects of chemo on a cognitive level, but he trudges on and somehow always gets through another day...but just one at a time.
Please keep the thoughts and prayers coming...they are priceless and a great source of strength and encouragement.
Much love and peace to all,
Patty
Believe it or not I managed to snag George W. away from the Secret Service to take a picture with Christopher. He was very congenial and let Chris know that he admired his strength in fighting such a battle and encouraged him to keep it up. It was a very big moment for this 14 year old and I know that is one day he will always remember!
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