Journal entry by Rachel Gregg —
Hi Friends and Family,
We are able to provide an update on Matt's health after his most recent bone marrow biopsy and this week's meeting with our oncologist.
First things first, the bone marrow biopsy came back clean. Matt is still leukemia free and we are so glad!! This was Matt's 11th bone marrow biopsy and I finally had the courage to be with him in the room during the procedure. I left the experience mildly traumatized while Matt left with a shrug of his shoulders noting the pain was a 6/10 - pretty good all things considered.
We decided against the 2nd stem cell transplant because the risk was too high and the evidence is lacking of a benefit to Matt's overall survival. As it is, our Dr. recommends Matt go through a few more months of a low-dose chemo - azacitidine - which is a cousin to the chemotherapy he was given this summer. The toxicity is low and our doc is hopeful there won't be many side effects from this treatment. It's inconclusive whether or not this chemo protects against relapse, but our doctor is confident that it will at least protect Matt against chronic graft versus host disease. We said we'd try the first round of treatment, but if Matt develops side effects or if the chemo significantly weakens Matt's immune system then we will stop the treatment.
Even though Matt still has low-dose chemo for the next few months, we feel like this could be it. Matt could be cured! On the other hand, this is exactly where we were after the stem cell transplant, except now the chance of relapse is higher than it was. We've heard doctors say Matt has a shot at living for many years and we've also heard doctors say Matt's chance of surviving the next couple years is 25%. Our main oncologist is not forthcoming with guidance on what we can expect in terms of prognosis or the chance of relapse. He is hesitant to even give an estimate since Matt's case is uncommon - the data just isn't there. So much to our disappointment, we are treating Matt's case like a true wild card. He could live for decades or this could be his last year. Who the heck knows.
It takes insane courage and energy to truly hope the cancer is gone, especially after being burned last year believing we were finally out of the woods only for it to come back. I feel like I'm living with an internal pendulum that constantly swings back and forth between hope and worry. The best days are when the swinging stops and I am simply able to enjoy what's right in front of me - Matt, family and friends, and of course our dog Darcy.
We are both happy to end the year at home (instead of a hospital room) and we are looking forward to seeing more family and friends over the holidays. Looking back on this year, yes parts of it were terrible, but it wasn't a complete disaster. Matt baked a ton of bread, I practiced yoga and read some good books, we saw some beautiful places, we both got new jobs, and Darcy is still living her best life. We are happy the leukemia is gone and we hope it never comes back!
Thank you for all your love and support. We couldn't have made it through the year without our community. Wishing you all the very best!
Rachel and Matt
PS - we reached our fundraising goal for True North Treks!!!!! Thank you to everyone who participated! This fundraiser truly meant a lot to both of us. Thanks for the support.
We are able to provide an update on Matt's health after his most recent bone marrow biopsy and this week's meeting with our oncologist.
First things first, the bone marrow biopsy came back clean. Matt is still leukemia free and we are so glad!! This was Matt's 11th bone marrow biopsy and I finally had the courage to be with him in the room during the procedure. I left the experience mildly traumatized while Matt left with a shrug of his shoulders noting the pain was a 6/10 - pretty good all things considered.
We decided against the 2nd stem cell transplant because the risk was too high and the evidence is lacking of a benefit to Matt's overall survival. As it is, our Dr. recommends Matt go through a few more months of a low-dose chemo - azacitidine - which is a cousin to the chemotherapy he was given this summer. The toxicity is low and our doc is hopeful there won't be many side effects from this treatment. It's inconclusive whether or not this chemo protects against relapse, but our doctor is confident that it will at least protect Matt against chronic graft versus host disease. We said we'd try the first round of treatment, but if Matt develops side effects or if the chemo significantly weakens Matt's immune system then we will stop the treatment.
Even though Matt still has low-dose chemo for the next few months, we feel like this could be it. Matt could be cured! On the other hand, this is exactly where we were after the stem cell transplant, except now the chance of relapse is higher than it was. We've heard doctors say Matt has a shot at living for many years and we've also heard doctors say Matt's chance of surviving the next couple years is 25%. Our main oncologist is not forthcoming with guidance on what we can expect in terms of prognosis or the chance of relapse. He is hesitant to even give an estimate since Matt's case is uncommon - the data just isn't there. So much to our disappointment, we are treating Matt's case like a true wild card. He could live for decades or this could be his last year. Who the heck knows.
It takes insane courage and energy to truly hope the cancer is gone, especially after being burned last year believing we were finally out of the woods only for it to come back. I feel like I'm living with an internal pendulum that constantly swings back and forth between hope and worry. The best days are when the swinging stops and I am simply able to enjoy what's right in front of me - Matt, family and friends, and of course our dog Darcy.
We are both happy to end the year at home (instead of a hospital room) and we are looking forward to seeing more family and friends over the holidays. Looking back on this year, yes parts of it were terrible, but it wasn't a complete disaster. Matt baked a ton of bread, I practiced yoga and read some good books, we saw some beautiful places, we both got new jobs, and Darcy is still living her best life. We are happy the leukemia is gone and we hope it never comes back!
Thank you for all your love and support. We couldn't have made it through the year without our community. Wishing you all the very best!
Rachel and Matt
PS - we reached our fundraising goal for True North Treks!!!!! Thank you to everyone who participated! This fundraiser truly meant a lot to both of us. Thanks for the support.
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