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!
Wednesday, February 2, 2011
A Change in Treatment
It has been 2 weeks since Christopher was discharged from his last round of Chemo. So far, though his counts are very low, he has not fevered. Normally at 5 or 6 days out we are headed to the ER but I think because he started that last round with an unnaturally high ANC (due to the Nuelasta) he has hit a plateau. I am hoping he skates through the drop and is on the rise. His counts need to be at least 1,000 before starting his 4th cycle of chemo.
He has been feeling pretty good overall with some increase in fatigue and decrease in appetite the last couple days but considering the beating he took with his last round he is doing well.
Lawrence and I met with his Oncologist, Dr. Joyce this week to discuss just where Christopher is at with his disease process and to find out what his plans are for the final 3 rounds of this chemo protocol. Thank God for another set of ears as I tend to tune out when I have heard enough clamor and tune in just in time to say what is on my mind...always seeking the "bottom line" of course. (Thank you Lawrence for your continued support!)
Though some clarity was gained there was definitely no bottom line and still much uncertainty around Christopher's treatment options. One of the reasons we met with Dr. Joyce is that Chris was ready to call it quits after round 3 due and there was talk about the need to stop one of the drugs. Before leaving the room, Christopher let Dr. Joyce know that his last round of chemo was "hell" and wanted to know what options he had if he opted out of the last 3 cycles. He had had enough.
The discussion that followed, both with and without Chris present was very lengthy and I am not sure I could reiterate if I tried so I will summarize as best I can.
At this point, assuming there are no other signs of metastases, Chris has a 1/4 chance of survival. If he does have another recurrence his odds go down considerably. Though every attempt would be made to remove any more lesions that MAY show up, there is a limit on how much surgery can be done. Dr. Joyce did point out that for treatment of Osteosarcoma to be successful chemo alone will not work, that the surgery is really more effective and necessary.
We are assuming Chris is free of any tumors right now and the goal with the chemo is to keep it that way. The fact that he had a recurrence means he has disease running through his system that needs to be arrested before it can form any more tumor. Because there is still a good possibility of recurrence when this chemo stops, Dr. Joyce also believes it is necessary to do somewhere between 18 months and 2 years of Interferon treatments.
We asked if Chris' chance of survival would go down if he did stop chemo now and just do his scans and surgery when necessary. We also talked about putting Chris on a chemo pill that he could take at home and avoid life in the hospital. While it would pose some of the same side effects, it is a much more mild dose and not as hard on his system.
Again, no real definitive answers other than the current aggressive protocol is meant to "cure" Chris and keep him disease free. The other modalities (the pill form) would be considered palliative treatment and meant only to slow down the process. There is just not enough data/studies to really give him or anyone else in this situation many viable options.
My concern, like most of his family and friends, is that quality of life be considered a priority. So we are carefully still weighing his options.
On Friday Christopher will have a bone scan and an MRI of his leg to see if his disease has metastasized to any of his bones. He will have another Chest CT after his next round to use as a comparison to the one done after his first 2 cycles. This comparison should better define the areas that lit up on the last CT and are assumed to be scar tissue or blood vessels.
If all tests show no evidence of disease the plan is to finish the final 2 cycles of this chemo protocol. Dr. Joyce has decided also to discontinue the use of Ifosfamide due to it's harsh effect on the kidneys and replace it with Cytoxan. (the lesser of 2 evils I suppose)
If any lesions show up, chemo will stop and the priority will be surgery. Then the dreaded discussion begins again on what to do next. Considering Chris has maxxed out on the drugs most used to treat Osteosarcoma there was not even a guess on what the next step should be.
I know what Chris wants to do next...take a vacation to CA for his spring break and be done with chemo and surgery so he can plan a cruise this summer. So...until we know more I will leave it at that!
Thanks for hanging through this update. I hope it made some sense. Believe me it really is even more confusing and exhausting than it sounds!
Still...we have faith and hope and continue to persevere.
Much peace to you all.
Patty
He has been feeling pretty good overall with some increase in fatigue and decrease in appetite the last couple days but considering the beating he took with his last round he is doing well.
Lawrence and I met with his Oncologist, Dr. Joyce this week to discuss just where Christopher is at with his disease process and to find out what his plans are for the final 3 rounds of this chemo protocol. Thank God for another set of ears as I tend to tune out when I have heard enough clamor and tune in just in time to say what is on my mind...always seeking the "bottom line" of course. (Thank you Lawrence for your continued support!)
Though some clarity was gained there was definitely no bottom line and still much uncertainty around Christopher's treatment options. One of the reasons we met with Dr. Joyce is that Chris was ready to call it quits after round 3 due and there was talk about the need to stop one of the drugs. Before leaving the room, Christopher let Dr. Joyce know that his last round of chemo was "hell" and wanted to know what options he had if he opted out of the last 3 cycles. He had had enough.
The discussion that followed, both with and without Chris present was very lengthy and I am not sure I could reiterate if I tried so I will summarize as best I can.
At this point, assuming there are no other signs of metastases, Chris has a 1/4 chance of survival. If he does have another recurrence his odds go down considerably. Though every attempt would be made to remove any more lesions that MAY show up, there is a limit on how much surgery can be done. Dr. Joyce did point out that for treatment of Osteosarcoma to be successful chemo alone will not work, that the surgery is really more effective and necessary.
We are assuming Chris is free of any tumors right now and the goal with the chemo is to keep it that way. The fact that he had a recurrence means he has disease running through his system that needs to be arrested before it can form any more tumor. Because there is still a good possibility of recurrence when this chemo stops, Dr. Joyce also believes it is necessary to do somewhere between 18 months and 2 years of Interferon treatments.
We asked if Chris' chance of survival would go down if he did stop chemo now and just do his scans and surgery when necessary. We also talked about putting Chris on a chemo pill that he could take at home and avoid life in the hospital. While it would pose some of the same side effects, it is a much more mild dose and not as hard on his system.
Again, no real definitive answers other than the current aggressive protocol is meant to "cure" Chris and keep him disease free. The other modalities (the pill form) would be considered palliative treatment and meant only to slow down the process. There is just not enough data/studies to really give him or anyone else in this situation many viable options.
My concern, like most of his family and friends, is that quality of life be considered a priority. So we are carefully still weighing his options.
On Friday Christopher will have a bone scan and an MRI of his leg to see if his disease has metastasized to any of his bones. He will have another Chest CT after his next round to use as a comparison to the one done after his first 2 cycles. This comparison should better define the areas that lit up on the last CT and are assumed to be scar tissue or blood vessels.
If all tests show no evidence of disease the plan is to finish the final 2 cycles of this chemo protocol. Dr. Joyce has decided also to discontinue the use of Ifosfamide due to it's harsh effect on the kidneys and replace it with Cytoxan. (the lesser of 2 evils I suppose)
If any lesions show up, chemo will stop and the priority will be surgery. Then the dreaded discussion begins again on what to do next. Considering Chris has maxxed out on the drugs most used to treat Osteosarcoma there was not even a guess on what the next step should be.
I know what Chris wants to do next...take a vacation to CA for his spring break and be done with chemo and surgery so he can plan a cruise this summer. So...until we know more I will leave it at that!
Thanks for hanging through this update. I hope it made some sense. Believe me it really is even more confusing and exhausting than it sounds!
Still...we have faith and hope and continue to persevere.
Much peace to you all.
Patty
Sunday, January 23, 2011
A Nauseating 3rd Round
There was a reason I could not even get Christopher to look at me for a picture...he was having one of the worst weeks since his relapse and was not a happy patient. 6 days of nausea, vomiting and of course boredom. As you can see by the picture he comes fully equipped for the occasion with his various technological distractions.Though he took quite a beating he managed to bounce back well enough to make it the long awaited Linkin Park concert in Tampa! Many many thanks to Dean for the incredible seats and backstage passes. It was a much deserved treat for Christopher to not only see his favorite band in concert but meet them as well! A great end to a rough week!
In less than 10 days following his admission to chemo his blood counts went from over 5,000 to under 70. Once again we are hoping to avoid nuetrapenia and a trip to the ER with a fever.
Next week I meet with his oncologist to discuss the next 3 months of Christopher's treatment. There may be some changes where one of the drugs may be tapered down or discontinued due to the risk of heavy side effects. We may even opt for an entirely different protocol. There is alot to consider and a much to think about, but primarily Christopher's well being and quality of life are the main considerations. His Dr.'s are still very determined to put him in complete remission so we are eager to see what they have to say and what his prognosis is at this point.
As always your thoughts and prayers are welcomed and much appreciated.
To a fever free "in between" time!
Backstage at Linkin ParkFriday, January 14, 2011
Happy 14th Christopher!
On January 7th Christopher turned 14 years old. He wanted to do some shooting so we went to Amelia Shotgun Sports where he rented a Beretta 680 over/under. He shot 2 rounds of trap...where he got 21/25 hits! He also did a round of sporting clays which was a but more difficult but fun nonetheless. It was good to see him out and about doing something he enjoys...and is quite good at I must admit!
I was glad to have had the opportunity to spend this special day with him and am very proud of how well he is handling his battle with cancer.
I was glad to have had the opportunity to spend this special day with him and am very proud of how well he is handling his battle with cancer.Happy Birthday Christopher...to many many more!
Lots of love! Mom
Special thanks to Nick for his patience and guidance throughout the day and for taking the time the teach Chris about sporting clays. Many, many thanks as well to Clyde for his kindness and generosity. It was very much appreciated and great to see such a well run and friendly operation.
Special thanks to Nick for his patience and guidance throughout the day and for taking the time the teach Chris about sporting clays. Many, many thanks as well to Clyde for his kindness and generosity. It was very much appreciated and great to see such a well run and friendly operation.
Monday, January 10, 2011
Fever #2 Right on Schedule
Back to the ER we went on Thursday the 30th. Almost a week after being discharged from his second round of Chemo, Christopher fevered as his counts had dramatically dropped since the weekend. Invariably, with the heavy duty chemotherapy drugs Chris is receiving his counts will drop (eventually to 0) immediately following his hospital stay and somewhere between day 11 and 13 from the start of his chemo he will fever. At that point he will require immediate IV antibiotics and blood cultures until the fevers stop and his counts recover. Fortunately his "Neulasta" shot came on schedule so he was able to go home later New Year's day. Within the next couple weeks his counts were back up to almost 5,000...a somewhat false read due to his shot, and they will slowly drop even without chemo but at least it gives him some strength and energy and room to move before the next round. His ANC needs to be at least 1,000 before getting more chemo. He has been doing very well both physically and mentally aside from having cold/flu virus that was going around since before Christmas. He has been on antibiotics ever since seeing as a dull cough persists and could be also due to his lungs having had such trauma from the recent surgeries. He is very susceptible to pneumonia so he is also on an additional antibiotic-Bactrim-that he takes every Saturday and Sunday regardless of how well he is feeling.We also got the results of Christopher's last Chest CT. It seems to be OK (free of any lesions), however, (there is always a "but"), there are areas that show up which are assumed to be scar tissue and another two new areas that appear to be blood vessels. So I am going with a clean scan but I will admit I will feel better next month when I see improvements on those questionable areas.
We also learned that his chemo protocol might be cut short as he will have maxxed out on one of the drugs-Ifosfamide (IFEX). He is due to go in this Saturday, January 15th for his 3rd cycle and should be home Thursday evening. What will happen after is to be determined. A bit disheartening...frustrating...even scary maybe? You bet. We were warned that this is experimental, that there is no silver bullet that can cure Osteosarcoma but I didn't realize that this plan would be cut short and that what comes next will be even more uncertain. Seems I always have a question to which there is really no definitive answer...my own "path" so to speak and lesson in letting go and trusting what will be. Still, Christopher continues to hang tough and fight like a true champ. He is pretty unaffected by the many bumps in the road and I believe that is what allows him to persevere.
I will be sure to provide more on the next step with his treatment when I talk to his oncologist.
Until then we hope for a quiet chemo week and look forward to a big treat for Christopher next weekend!
Below is Christopher with Eric Mason of Premier Physical Therapy.
In between hospital stays Chris has had to have physical therapy again to try and relieve some of the pain he has been having on his left knee. Much of that comes from compensating for the prosthetic's mechanics. Eric, and his partner Chris were very effective in correcting Christopher's gait and making the necessary changes and recommendations for his prosthesis. It has made a big difference so far and hopefully will alleviate some of his symptoms.
Monday, December 27, 2010
Second Chemo Cycle Complete
Christopher finished his second cycle of chemo just in time to celebrate Christmas.
On Christmas Eve, after spending 6 days at Wolfson's, Chris was discharged with no complications and feeling pretty good considering the heavy doses of meds he is getting. This was the first Christmas he has spent in FL in many many years as this is usually his time to visit CA so we were happy to be home and able to take a short trip to his Nonni and Papa's!
On Monday (12/27), Christopher had his blood counts taken and I was surprised to learn on Tuesday morning that his counts had already dropped to 26 and he is now considered neutropenic! (Again he originally started with an "ANC" of over 4,000!) When he bottoms out like this it typically means a fever and trip to the hospital but so far he has not spiked a temperature. Though it is expected that this type of chemo will wipe out his blood counts (the absolute neutrophil count), it seems to be happening much quicker than it did the last time. He has been on antibiotics since he got out of the hospital and finally received his "Neulasta" which should help. For a mere $6,000/shot he can inject himself after each round of chemo to boost his body's ability to produce more neutrophils and prevent a long hospital stay after fevers waiting for his blood counts to come up. He may well have already hit 0 and be on the rebound. One can only hope!
Next week, January 4th he will have a follow up chest CT so see if his lungs are still clear. The following week he will begin the 3rd Chemo cycle. (If his counts are high enough that is)
I hope everyone had a wonderful Holiday and many many wishes to you all for a very healthy and happy 2011!
Much love and peace to you all,
Patty
Subscribe to:
Posts (Atom)
