Here is the update from Stephen's Parents:
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In the past we were usually on track for major diversions, problems, roadblocks, complications and the like about every two weeks.
This time around we got one day! One Day???
We had made the decision to go with the 6 week "curative" treatment yesterday rather than a "palliative" 3 week course of radiation. That meant we would go with a longer radiation treatment of carefully planned and focused radiation and play it by ear until things changed as we expected they would. This was all decided, interestingly enough, while Stephen was in the same MRI that would force another change in plan.
What we have learned today from that scan is that:
1) The tumor in Stephen's pelvis has grown by 25-50% within just the last week. This has even surprised and shocked the doctors. (We knew it was fast growing - that's why we called them over the weekend!)
2) The spot of fungal growth in Stephen's brain has also grown and now has assembled itself into a pattern that they can recognize as fungus. It's very clear.
First to address the tumor:
We are now pressed into yet another plan - we will go forward in the same mindset as the 6 week plan, but compress it into 3.5 weeks. The tumor has grown so fast that we can't take the time necessary to calculate and plan a more specific, focused, "slower burn" radiation treatment. That preparation was taking a few days and would have prevented us from starting before Monday.
We will now begin slinging more generalized, higher concentrated dose radiation at the tumor tomorrow morning to try to stop it. They feel worried enough about it to have scheduled him to come in on Saturday for the radiation too. The revised plan will take 3.5 weeks.
The hope is that as fast as it is growing, with enough radiation it will also shrink just as fast. They will be obtaining new MRI's each week and if successful, we should see results that quickly. However, no one has any hope of the radiation clearing all of the cancer. Chemotherapy would be needed to "mop" up the remaining bits left over down to the microscopic scale. The fungal infection will prevent that from happening within the proper time frame. (more on that below)
We also heard officially today from the head surgeon at St. Jude that this specific tumor is completely unresectable now and would likely never be resectable due to it's position on the sciatic nerve. We have to take surgery off the table all together at this point. It's nothing we didn't already know.
So why the heck didn't we feel good yesterday about the 3 week choice when we are now being forced into a very similar plan today???
Strangely, we think we are better off having made the choice to go "curative" yesterday when the plan now is clearly a hybrid of curitive/palliative. For one, our doctors clearly know now that we still want to fight. They are supporting us and approaching it as if that is still the focus today. If we were to have made the choice to quit yesterday, they would have written us off in a way. There would have been no more MRI's to define mass changes or find metastatic disease. We would not have had the information provided us to play this out to the point we are forced to throw in the towel. That point has not come yet, but is growing ever closer. We are fortunate now to have doctors that are not throwing in the towel just yet either. We could sense a finality in their language with us the other day and now it is not so. That is clearly a product of the choice we made yesterday. .
We also needed to make the decision yesterday to firm up our resolve to do all we could and not have any regrets. That one is big. Had we made the palliative choice yesterday - even knowing it was the right or inevitable choice, we would have always looked back and questioned ourselves. I think Heavenly Father knew this and took it into account on our behalf.
The fungus is growing too:
Stephen is NOT currently experiencing any symptoms from the fungus in his head. If he was, he'd have headache, nausea, fever and possibly some vision problems cropping up. If they can not stop it, he will. It would end his life in the same way brain cancer would, except much slower.
Had we chosen the palliative route yesterday, they would have given Stephen Fluconazole for the rest of his remaining life to keep the fungus at bay. Because we chose to fight, they have also added another IV drug into the treatment. They hope the combination will kill all of the fungal infection for good. However, that may take a long time.
We have started going into the medicine room every day to receive the 2 hour IV dose. Because the drug is hard on the kidneys, he also has to have a half-hour bag of fluid first bringing our new daily diversion to 2-1/2 hours each day for the next 7 or more days.
Because the fungus really likes plastic and can't be cleared from it, they also have wanted to do another brain surgery to replace Stephen's shunt as early as in two weeks. We told them "no", and our doctor looked at us like "what??" When Amber explained that we wanted to hold the surgery off as long as possible in order to see how everything else came out... that we didn't want any unnecessary surgeries... he understood. He agreed with us and even commented that we were very knowledgeable medically.
I thought that was quite the compliment from a doctor. I don't know about "knowlegable" but I do know that through all of this we have really tried to keep up with as much medically as we can absorb. We've read, we've researched, we've asked tons of questions. It's been quite the education. But MORE than that, I really do believe that we've been guided by a higher power. We've been lead to connect facts and symptoms together. We've made correct diagnosis's before the doctors have in some situations. We have really been guided, and I'm just grateful for doctors that have been humble enough to listen and trust us in those situations. I do believe they have been guided at times as well. It's truly been a collective effort from the professional, the parent, and an almighty power on Stephen's behalf.
UPDATE:
Just thought I'd let you know, since this was posted and they started doing the radiation on the tumor, it has shrunk by 50%. That's right! FIFTY PERCENT!!! This is WONDERFUL news! It's nice to hear some good news, isn't it. :)
***********************************
In the past we were usually on track for major diversions, problems, roadblocks, complications and the like about every two weeks.This time around we got one day! One Day???
We had made the decision to go with the 6 week "curative" treatment yesterday rather than a "palliative" 3 week course of radiation. That meant we would go with a longer radiation treatment of carefully planned and focused radiation and play it by ear until things changed as we expected they would. This was all decided, interestingly enough, while Stephen was in the same MRI that would force another change in plan.
What we have learned today from that scan is that:
1) The tumor in Stephen's pelvis has grown by 25-50% within just the last week. This has even surprised and shocked the doctors. (We knew it was fast growing - that's why we called them over the weekend!)
2) The spot of fungal growth in Stephen's brain has also grown and now has assembled itself into a pattern that they can recognize as fungus. It's very clear.
First to address the tumor:
We are now pressed into yet another plan - we will go forward in the same mindset as the 6 week plan, but compress it into 3.5 weeks. The tumor has grown so fast that we can't take the time necessary to calculate and plan a more specific, focused, "slower burn" radiation treatment. That preparation was taking a few days and would have prevented us from starting before Monday.
We will now begin slinging more generalized, higher concentrated dose radiation at the tumor tomorrow morning to try to stop it. They feel worried enough about it to have scheduled him to come in on Saturday for the radiation too. The revised plan will take 3.5 weeks.
The hope is that as fast as it is growing, with enough radiation it will also shrink just as fast. They will be obtaining new MRI's each week and if successful, we should see results that quickly. However, no one has any hope of the radiation clearing all of the cancer. Chemotherapy would be needed to "mop" up the remaining bits left over down to the microscopic scale. The fungal infection will prevent that from happening within the proper time frame. (more on that below)
We also heard officially today from the head surgeon at St. Jude that this specific tumor is completely unresectable now and would likely never be resectable due to it's position on the sciatic nerve. We have to take surgery off the table all together at this point. It's nothing we didn't already know.
So why the heck didn't we feel good yesterday about the 3 week choice when we are now being forced into a very similar plan today???
Strangely, we think we are better off having made the choice to go "curative" yesterday when the plan now is clearly a hybrid of curitive/palliative. For one, our doctors clearly know now that we still want to fight. They are supporting us and approaching it as if that is still the focus today. If we were to have made the choice to quit yesterday, they would have written us off in a way. There would have been no more MRI's to define mass changes or find metastatic disease. We would not have had the information provided us to play this out to the point we are forced to throw in the towel. That point has not come yet, but is growing ever closer. We are fortunate now to have doctors that are not throwing in the towel just yet either. We could sense a finality in their language with us the other day and now it is not so. That is clearly a product of the choice we made yesterday. .
We also needed to make the decision yesterday to firm up our resolve to do all we could and not have any regrets. That one is big. Had we made the palliative choice yesterday - even knowing it was the right or inevitable choice, we would have always looked back and questioned ourselves. I think Heavenly Father knew this and took it into account on our behalf.
The fungus is growing too:
Stephen is NOT currently experiencing any symptoms from the fungus in his head. If he was, he'd have headache, nausea, fever and possibly some vision problems cropping up. If they can not stop it, he will. It would end his life in the same way brain cancer would, except much slower.
Had we chosen the palliative route yesterday, they would have given Stephen Fluconazole for the rest of his remaining life to keep the fungus at bay. Because we chose to fight, they have also added another IV drug into the treatment. They hope the combination will kill all of the fungal infection for good. However, that may take a long time.
We have started going into the medicine room every day to receive the 2 hour IV dose. Because the drug is hard on the kidneys, he also has to have a half-hour bag of fluid first bringing our new daily diversion to 2-1/2 hours each day for the next 7 or more days.
Because the fungus really likes plastic and can't be cleared from it, they also have wanted to do another brain surgery to replace Stephen's shunt as early as in two weeks. We told them "no", and our doctor looked at us like "what??" When Amber explained that we wanted to hold the surgery off as long as possible in order to see how everything else came out... that we didn't want any unnecessary surgeries... he understood. He agreed with us and even commented that we were very knowledgeable medically.
I thought that was quite the compliment from a doctor. I don't know about "knowlegable" but I do know that through all of this we have really tried to keep up with as much medically as we can absorb. We've read, we've researched, we've asked tons of questions. It's been quite the education. But MORE than that, I really do believe that we've been guided by a higher power. We've been lead to connect facts and symptoms together. We've made correct diagnosis's before the doctors have in some situations. We have really been guided, and I'm just grateful for doctors that have been humble enough to listen and trust us in those situations. I do believe they have been guided at times as well. It's truly been a collective effort from the professional, the parent, and an almighty power on Stephen's behalf.
UPDATE:
Just thought I'd let you know, since this was posted and they started doing the radiation on the tumor, it has shrunk by 50%. That's right! FIFTY PERCENT!!! This is WONDERFUL news! It's nice to hear some good news, isn't it. :)
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2 people leaving some love!:
Sending good thoughts to you and Stephen's family!! Loving the good news :)
XOXO Melissa
So glad that the tumor's shrinking! I know this must be a long hard battle, but it's a battle worth fighting. Prayers are going out to Stephen and his family!
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