For those of you who haven’t heard already: We got the go ahead for transplant!!! Praise God and thank you for your prayers!
Joe did not reach full remission, meaning he still has cancer cells present. However, our doctors feel that with the decrease from 7% to 5% cancer cells and 90% to 40% cellularity (basically the density of the cells in the marrow) that we have a good chance moving forward. They also feel that the damage of another round of intense chemo would not be worth it for the results we would likely see.
On Monday morning, after one more great family weekend, Joe will be admitted to Duke to begin the transplant process. It is difficult to express the simultaneous amount of relief and dread I feel. I am profoundly thankful that we’ve made it this far, but still fearful for what we are about to face. In trying wrap my head around this season I can’t help but to think of a draft. I imagine us as peace ambassadors drafted for a war we want no part of. We somehow made it through basic training alive but now we actually have to go to war. Part of me is relieved that we can get this mess over with, but I know the battles ahead could be hell. It will be a long process, however, it is beatable and I believe we can come out on the other side with a crazy story of how we were protected along the way.
For those of you who want the details of what will be happening over the next few weeks I have laid it all out below (warning: it may be a long read). For the rest of you, please continue to pray for us. This will be the hardest part by far, especially the next month as it is the most critical and unstable condition Joe will be forced into yet. He will be having total body irradiation (TBI) and chemo in order to empty out his marrow completely and make room for his sister’s donation. Because of this compromised state there is a 10-15% chance of fatality within the first month. Once again, please know that I don’t share this to bring forth fear or pity, only to invoke the prayer we desperately need. Thank you so much for all that you have offered up thus far, we have felt it carry us.
-------------- The details---------------
(Please note that much of what I write in this section is pulled either directly or modified from http://www.bmtinfonet.org. This is a great website with a ton of information. Please go there if you are interested in any other information.)
Like I stated before, Joe will be admitted on Monday morning and will begin his “conditioning regime” on Tuesday morning (day marked as -9). There are many different approaches for bone marrow/stem cell transplants (BMT), but for Joe this will involve 11 rounds of TBI over the course of three and a half days, followed by four days of chemo and one rest day. The conditioning regimen has two objectives: to destroy the patient's disease, and to suppress the patient's immune system so that transplanted blood stem cells can begin producing healthy blood cells.
During this “conditioning” time Joe’s sister will begin Granulocyte-colony stimulating factor injections to boost her stem cell production. From what I know, these are not painful injections but they can cause flu like symptoms (please join us in praying that those would be minimal for Amanda). On Joe’s day -1 Amanda will have a full day at the clinic for the harvest; this is a fairly easy procedure. After and IV is placed blood will be drawn out of one arm, sent to a machine where the stem cells will be separated, then the remaining blood is sent back into the IV in the other arm.
Joe will be having a transplant in which they will separate out most of the T-cells from Amanda's donation before transplant. This is because T-cells are what cause Grafts Verses Host Disease (GVHD). (This is when the donor T-cells detect their new environment as a foreign and signal the immune system to attack.) There are many different ways to manage this disease; this is the route that was chosen for us.
On Joe’s day 0 they will do the transplant. This is thought to be his “re-birthday” and one of many mile markers to come. The transplant itself is much like a blood transfusion. The stem cells are infused into his body through his Hickman catheter. He will be awake during the process and it will take about an hour. Then we wait for engraftment, which normally takes 2-3 weeks. (In a small percentage of patients - less than 5% - the stem cells do not engraft. If graft rejection occurs, a second transplant may be an option.) Once we see signs of engraftment, which would be indicated by his numbers beginning to rebound, we take a big sighs of relief and he will be discharged to be an outpatient. After 4-6 weeks in the hospital, this will be a huge moment to celebrate! This is not to say the battle will be over for us. We will still be required to stay in the area for about two months after discharge but at least we’ll be together.
The big mile markers for all BMT patients are as follows:
Day 0: You get your transplant. Happy Re-Birthday!
Day 14: You survived the conditioning without any major infection!!!
Day 30ish: You engrafted and are able to leave the hospital!
Day 100: The arguable “worst of it” is over and you’ll be close to going home!!!!!!
Every Re-Birthday there after is a huge success. While there could potentially always be risk of GVHD showing up, the further out from transplant you make it the better off you are.
I know this is a lot of information, I hope that it clarifies rather than confuses. Please let me know if you have any specific question, it will help me in my future posts. We’re about to start one heck of a ride. Thanks for cheering us on. We love you all!!
On Monday morning, after one more great family weekend, Joe will be admitted to Duke to begin the transplant process. It is difficult to express the simultaneous amount of relief and dread I feel. I am profoundly thankful that we’ve made it this far, but still fearful for what we are about to face. In trying wrap my head around this season I can’t help but to think of a draft. I imagine us as peace ambassadors drafted for a war we want no part of. We somehow made it through basic training alive but now we actually have to go to war. Part of me is relieved that we can get this mess over with, but I know the battles ahead could be hell. It will be a long process, however, it is beatable and I believe we can come out on the other side with a crazy story of how we were protected along the way.
For those of you who want the details of what will be happening over the next few weeks I have laid it all out below (warning: it may be a long read). For the rest of you, please continue to pray for us. This will be the hardest part by far, especially the next month as it is the most critical and unstable condition Joe will be forced into yet. He will be having total body irradiation (TBI) and chemo in order to empty out his marrow completely and make room for his sister’s donation. Because of this compromised state there is a 10-15% chance of fatality within the first month. Once again, please know that I don’t share this to bring forth fear or pity, only to invoke the prayer we desperately need. Thank you so much for all that you have offered up thus far, we have felt it carry us.
-------------- The details---------------
(Please note that much of what I write in this section is pulled either directly or modified from http://www.bmtinfonet.org. This is a great website with a ton of information. Please go there if you are interested in any other information.)
Like I stated before, Joe will be admitted on Monday morning and will begin his “conditioning regime” on Tuesday morning (day marked as -9). There are many different approaches for bone marrow/stem cell transplants (BMT), but for Joe this will involve 11 rounds of TBI over the course of three and a half days, followed by four days of chemo and one rest day. The conditioning regimen has two objectives: to destroy the patient's disease, and to suppress the patient's immune system so that transplanted blood stem cells can begin producing healthy blood cells.
During this “conditioning” time Joe’s sister will begin Granulocyte-colony stimulating factor injections to boost her stem cell production. From what I know, these are not painful injections but they can cause flu like symptoms (please join us in praying that those would be minimal for Amanda). On Joe’s day -1 Amanda will have a full day at the clinic for the harvest; this is a fairly easy procedure. After and IV is placed blood will be drawn out of one arm, sent to a machine where the stem cells will be separated, then the remaining blood is sent back into the IV in the other arm.
Joe will be having a transplant in which they will separate out most of the T-cells from Amanda's donation before transplant. This is because T-cells are what cause Grafts Verses Host Disease (GVHD). (This is when the donor T-cells detect their new environment as a foreign and signal the immune system to attack.) There are many different ways to manage this disease; this is the route that was chosen for us.
On Joe’s day 0 they will do the transplant. This is thought to be his “re-birthday” and one of many mile markers to come. The transplant itself is much like a blood transfusion. The stem cells are infused into his body through his Hickman catheter. He will be awake during the process and it will take about an hour. Then we wait for engraftment, which normally takes 2-3 weeks. (In a small percentage of patients - less than 5% - the stem cells do not engraft. If graft rejection occurs, a second transplant may be an option.) Once we see signs of engraftment, which would be indicated by his numbers beginning to rebound, we take a big sighs of relief and he will be discharged to be an outpatient. After 4-6 weeks in the hospital, this will be a huge moment to celebrate! This is not to say the battle will be over for us. We will still be required to stay in the area for about two months after discharge but at least we’ll be together.
The big mile markers for all BMT patients are as follows:
Day 0: You get your transplant. Happy Re-Birthday!
Day 14: You survived the conditioning without any major infection!!!
Day 30ish: You engrafted and are able to leave the hospital!
Day 100: The arguable “worst of it” is over and you’ll be close to going home!!!!!!
Every Re-Birthday there after is a huge success. While there could potentially always be risk of GVHD showing up, the further out from transplant you make it the better off you are.
I know this is a lot of information, I hope that it clarifies rather than confuses. Please let me know if you have any specific question, it will help me in my future posts. We’re about to start one heck of a ride. Thanks for cheering us on. We love you all!!
