Yesterday Marshall had another 2 hour drip of chemo that makes him extremely tired. While he was in the bathroom with Pappa Wheeley, I expressed my worry that I try so hard to hide from him every day to a nurse on the eighth floor. He looked at me and said, "The transplant is going to happen. Your husband is going to get an infection and be readmitted because he will have no immune system. You can choose whether to worry or not, but it will happen". His perspective comes from talking to bone marrow transplant survivors one year after the transplant, two years after the transplant, and so forth. I tried to connect with him from their angles because as far as I know, he's never had a family member go through it. The unknown. That is what we are embarking on. As much as I have studied bone marrow transplants, read others' stories, watched them, good and bad results--- the conclusion I have reached is that I wish I had a way of knowing all things. Faith is the closest thing I can have to omnipotence right now.
My dad said something that made me cry after he read my feelings of last post: "My sweet baby girl! A very fine line separates faith from fear. I don't pretend to understand it, but I think it has something to do with choosing to follow a compelling voice from deep within that whispers, "Head up, move forward, smile through the pain and uncertainty, and trust in the one who descended below it all to usher you safely home." Your opportunity becomes my opportunity to comprehend a little more clearly the depth of His perfect love. Look, listen, breathe, and know that He--and the rest of us--are very near. All my love, Daddy."
I do not think we have officially declared this on our blog, but Marshall has two complete matches who are willing to donate their bone marrow to him. We cannot know anything about them right now. Just that they are male and young. What a precious gift they are willing to give. For the rest of my life I hope to remember the value of a gift and to give only the best. Marshall will be taking 15 nasty pills a day for a few more days this week (besides the ones he has to take every day) and then he will have a few weeks for his counts to recover for the last time before transplant.
Many people have asked me about transplant. Some ask, "Isn't it even harder for the donor than the patient?" They used to actually drill into the bone marrow of the donor to get what they need. Marshall has had this done at least six times to check on the status of the cancer. The science of a bone marrow transplant has gotten better and now they are able to give the donor medicine that helps them produce bone marrow blasts in the donor's blood (what Marshall will need to graft as soon as they completely kill off his bone marrow) that are collected and centrifuged while the rest of the donor's blood is given back to them through the other arm. In my mind I think of an exaggerated blood donation. The medication can make the donor achy and it may take a few days to collect all they need. I signed up to save a life and you can too by going to bethematch.com. The actual receiving of the stem cells is like a blood transfusion for the patient. Except they may knock him out with benadryl and other things beforehand to try to counteract an allergic reaction to the materials they use to keep the marrow fresh. It is the preparation that he has to do in order to be ready for the transplant that makes it tedious.
In Marshall's case, he will do three days of a very strong chemotherapy followed by a day of rest. He will then do six days of full body radiation followed by two days of cytoxin. So, in nearly two weeks, they will attempt to kill off his entire bone marrow. Without the grafting of a donor's bone marrow he would never recover. From there it's a wait to see if the new cells graft and if there is graft vs. host disease and to what extent. He can expect to be in the hospital for two months if all goes well. Most survivors I have talked to have stayed anywhere from four to seven months. It's the unknown all over again.
Now we have three weeks to be home as a family (between hospital visits) before he starts the next big step. Tentatively, the first through second week of May he will be going through prep for transplant and the third or fourth week he will be getting a stem cell transplant and a second birthday! Hip Hip Hooray! Side note: our little boy took his first steps alone on his ten month birthday. He is not walking on his own yet, but at least Marshall got to be home for that.
As far as visitors go, the critical time is these three weeks leading up to transplant and a month after he is released from the hospital to avoid infection. Of course, he loves visitors, but if you have been around anyone sick or even feel ill in the slightest please stay away. Here's to skyping, phone calls, texts, and gifts to Marshall on his new birthday! If you would like to skype with him, his skype name is Marshalljfox.
My dad said something that made me cry after he read my feelings of last post: "My sweet baby girl! A very fine line separates faith from fear. I don't pretend to understand it, but I think it has something to do with choosing to follow a compelling voice from deep within that whispers, "Head up, move forward, smile through the pain and uncertainty, and trust in the one who descended below it all to usher you safely home." Your opportunity becomes my opportunity to comprehend a little more clearly the depth of His perfect love. Look, listen, breathe, and know that He--and the rest of us--are very near. All my love, Daddy."
I do not think we have officially declared this on our blog, but Marshall has two complete matches who are willing to donate their bone marrow to him. We cannot know anything about them right now. Just that they are male and young. What a precious gift they are willing to give. For the rest of my life I hope to remember the value of a gift and to give only the best. Marshall will be taking 15 nasty pills a day for a few more days this week (besides the ones he has to take every day) and then he will have a few weeks for his counts to recover for the last time before transplant.
Many people have asked me about transplant. Some ask, "Isn't it even harder for the donor than the patient?" They used to actually drill into the bone marrow of the donor to get what they need. Marshall has had this done at least six times to check on the status of the cancer. The science of a bone marrow transplant has gotten better and now they are able to give the donor medicine that helps them produce bone marrow blasts in the donor's blood (what Marshall will need to graft as soon as they completely kill off his bone marrow) that are collected and centrifuged while the rest of the donor's blood is given back to them through the other arm. In my mind I think of an exaggerated blood donation. The medication can make the donor achy and it may take a few days to collect all they need. I signed up to save a life and you can too by going to bethematch.com. The actual receiving of the stem cells is like a blood transfusion for the patient. Except they may knock him out with benadryl and other things beforehand to try to counteract an allergic reaction to the materials they use to keep the marrow fresh. It is the preparation that he has to do in order to be ready for the transplant that makes it tedious.
In Marshall's case, he will do three days of a very strong chemotherapy followed by a day of rest. He will then do six days of full body radiation followed by two days of cytoxin. So, in nearly two weeks, they will attempt to kill off his entire bone marrow. Without the grafting of a donor's bone marrow he would never recover. From there it's a wait to see if the new cells graft and if there is graft vs. host disease and to what extent. He can expect to be in the hospital for two months if all goes well. Most survivors I have talked to have stayed anywhere from four to seven months. It's the unknown all over again.
Now we have three weeks to be home as a family (between hospital visits) before he starts the next big step. Tentatively, the first through second week of May he will be going through prep for transplant and the third or fourth week he will be getting a stem cell transplant and a second birthday! Hip Hip Hooray! Side note: our little boy took his first steps alone on his ten month birthday. He is not walking on his own yet, but at least Marshall got to be home for that.
As far as visitors go, the critical time is these three weeks leading up to transplant and a month after he is released from the hospital to avoid infection. Of course, he loves visitors, but if you have been around anyone sick or even feel ill in the slightest please stay away. Here's to skyping, phone calls, texts, and gifts to Marshall on his new birthday! If you would like to skype with him, his skype name is Marshalljfox.
You both are such an inspiration Amanda! Your family is constantly in my prayers!
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