Journal entry by Jenny Ravenscroft —
HOME. In Hutch. HOME.
Yesterday early afternoon (Saturday) Dad and Mom arrived back in South Hutch!
Let’s go back a few days....
Beginning 3/21, they left the hospital and began their stay at the Hope Lodge. He went to the outpatient cancer center and had labs drawn on Wednesday morning and unfortunately caused a little chaos. While walking with his walker, he had a sudden drop in blood pressure and passed out...went totally down in the hallway as he was walking to the lab. He didn’t hit his head thankfully, but scared my mom and the staff. He received IV fluids and extra potassium that day and he’s been doing great since.
Still walking with a walker but no longer needs a gait belt. Small victories!
Friday morning (3/22) Mom, Dad and I met with the Bone Marrow Transplant physician and his nurse coordinator. He had blood drawn and his ANC (marker of how immunosuppressive he is) was up to 1800, which was another huge leap. His platelets were 34k, so no need for a transfusion.
After meeting with the BMT doctor, we found out Brian isn’t a good match for Dad after all, as he is CMV negative (Dad is CMV positive). All of us kids are half-matches but there are other compatibilities that need to be checked in order to be a suitable donor. (Brian hasn’t ever been exposed to a virus called CMV (cytomegalovirus) which is basically harmless in normal people, and probably 75% of adults are CMV positive.) On Friday I had labs drawn to see if I could be a match, and Holly will be contacted for testing also.
Further discussion about stem cell/bone marrow transplant revealed some sobering statistics. 40% of patients going through BMT don’t survive the first year. The chance of survival through transplant decreases with age. They don’t transplant anyone 75 or older. Dad is 72. Also, frailty is a huge factor when considering transplant. Next Friday, Dad and Mom return to the KU Cancer Center and he will have an outpatient bone marrow biopsy and spinal tap to determine if he’s in remission. That day he will also have a Fragility test, basically testing his physical competence and strength. If he doesn’t pass the Fragility test, then no matter how perfect of a match could be found he would not be allowed to proceed with transplant. The BMT doctor was kind but stern (and realistic) saying that a patient must be physically strong enough to survive the transplant. It’s very difficult on the body, not just the 5 days of hard-core chemo but the months of recovery afterward. So, he looked at Dad and then looked at Dad’s walker next to him...told him he had to get rid of that otherwise transplant can’t be considered.
So there’s a 40% risk of not surviving the transplant, and somewhere around 50% possibly up to 60% of patients won’t make it 2 years post transplant. On the other end however, post-transplant the risk of living 5 years or longer is around 40% and if transplant is successful he could have many years ahead of him.
The other avenue is what I would call maintenance chemo. If he’s in remission (with next Friday’s biopsy), then he could consider 2 chemo meds that are given at home; an injection and a pill. I’m unsure the frequency or side effects as they weren’t discussed in too much detail. It might be possible that Dad would feel good on those meds, but we just don’t know yet. The thing is, that after 1-2 years the effectiveness of those meds begins to wear off and the leukemia will come back.
For now, they are HOME. Adults who are healthy are welcome to visit, but everyone should wear a mask for now. Please wash hands and use hand sanitizer when you visit him. :) He can’t eat in a restaurant yet, as his dishes/utensils, etc, all need to be truly sanitized. He can eat anything that is steamed, cooked, baked, grilled, fried (no lunch meat, etc). He can have take out (such as Anchor to go) and his other fav’s.
Thank you for the ongoing love and prayers and support for Mom and Dad as we all process the information. No decisions about future treatments can be made until the results are back in a couple weeks. So we wait. :)
-Jenny
Yesterday early afternoon (Saturday) Dad and Mom arrived back in South Hutch!
Let’s go back a few days....
Beginning 3/21, they left the hospital and began their stay at the Hope Lodge. He went to the outpatient cancer center and had labs drawn on Wednesday morning and unfortunately caused a little chaos. While walking with his walker, he had a sudden drop in blood pressure and passed out...went totally down in the hallway as he was walking to the lab. He didn’t hit his head thankfully, but scared my mom and the staff. He received IV fluids and extra potassium that day and he’s been doing great since.
Still walking with a walker but no longer needs a gait belt. Small victories!
Friday morning (3/22) Mom, Dad and I met with the Bone Marrow Transplant physician and his nurse coordinator. He had blood drawn and his ANC (marker of how immunosuppressive he is) was up to 1800, which was another huge leap. His platelets were 34k, so no need for a transfusion.
After meeting with the BMT doctor, we found out Brian isn’t a good match for Dad after all, as he is CMV negative (Dad is CMV positive). All of us kids are half-matches but there are other compatibilities that need to be checked in order to be a suitable donor. (Brian hasn’t ever been exposed to a virus called CMV (cytomegalovirus) which is basically harmless in normal people, and probably 75% of adults are CMV positive.) On Friday I had labs drawn to see if I could be a match, and Holly will be contacted for testing also.
Further discussion about stem cell/bone marrow transplant revealed some sobering statistics. 40% of patients going through BMT don’t survive the first year. The chance of survival through transplant decreases with age. They don’t transplant anyone 75 or older. Dad is 72. Also, frailty is a huge factor when considering transplant. Next Friday, Dad and Mom return to the KU Cancer Center and he will have an outpatient bone marrow biopsy and spinal tap to determine if he’s in remission. That day he will also have a Fragility test, basically testing his physical competence and strength. If he doesn’t pass the Fragility test, then no matter how perfect of a match could be found he would not be allowed to proceed with transplant. The BMT doctor was kind but stern (and realistic) saying that a patient must be physically strong enough to survive the transplant. It’s very difficult on the body, not just the 5 days of hard-core chemo but the months of recovery afterward. So, he looked at Dad and then looked at Dad’s walker next to him...told him he had to get rid of that otherwise transplant can’t be considered.
So there’s a 40% risk of not surviving the transplant, and somewhere around 50% possibly up to 60% of patients won’t make it 2 years post transplant. On the other end however, post-transplant the risk of living 5 years or longer is around 40% and if transplant is successful he could have many years ahead of him.
The other avenue is what I would call maintenance chemo. If he’s in remission (with next Friday’s biopsy), then he could consider 2 chemo meds that are given at home; an injection and a pill. I’m unsure the frequency or side effects as they weren’t discussed in too much detail. It might be possible that Dad would feel good on those meds, but we just don’t know yet. The thing is, that after 1-2 years the effectiveness of those meds begins to wear off and the leukemia will come back.
For now, they are HOME. Adults who are healthy are welcome to visit, but everyone should wear a mask for now. Please wash hands and use hand sanitizer when you visit him. :) He can’t eat in a restaurant yet, as his dishes/utensils, etc, all need to be truly sanitized. He can eat anything that is steamed, cooked, baked, grilled, fried (no lunch meat, etc). He can have take out (such as Anchor to go) and his other fav’s.
Thank you for the ongoing love and prayers and support for Mom and Dad as we all process the information. No decisions about future treatments can be made until the results are back in a couple weeks. So we wait. :)
-Jenny
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