I didn't post this update sooner because we needed time to sit with the kids and Cindy to let them know what we learned today. We prayed about how much to tell our kids (they are 19, 22, 23, and 24). Ultimately, we landed where we landed back in 2012. When God restored our marriage, we committed to always be as honest as we could with our kids, even if it's hard. Radical honesty. Each one of them has responded well in the past to knowing the truth, because we have worked hard to cultivate this with them. Our family is strong. We are very close to one another and God gave us peace about how much we would tell them.
This post is going to be pretty long (per usual). We learned some things that needed to be discussed as a family first, but now we are sharing with you. We have appreciated all of the love and support we have received and we wanted to continue to share as I know many of you are walking with us through this.
We received fairly shocking news today from the Wash U/Barnes Jewish oncologists this morning. Since Kris' diagnosis back in August, everyone talked about how treatable Multiple Myeloma is. How it comes back, but you just treat it again. They all kept saying, "Well, of all the cancers to get, at least it's this one." I intentionally didn't do any research beyond a basic understanding what is happening in his body, because I knew it would not be healthy for my mind and I am extremely protective of my peace these days. I have fought too hard to be careless with the gift God has given me in that regard. Today, however, we had a reality check that neither of us were expecting, and it kind of knocked the wind out of us.
After your first bone marrow transplant, they hope to give you 5-7 years before the cancer returns. Without the transplant, it's 3-5 before it re-occurs. When it does return, and that is the nature of this particular cancer, they can treat it again. But each time they treat it, the time between re-occurrences gets shorter. Statically, people with this cancer can live another 10 years. Some longer, some less, but on average, it becomes fatal within 10 years We really just didn't know this and it was a hard thing to hear, but so very appreciated. I work best with as much info as possible and I felt a bit of a relief to have this piece of information, however disruptive it was in the moment. It was a moment. And there will be more moments in the next days, weeks, months, and years. But it was still just a moment in time.
Essentially, from a purely statistical standpoint (and not factoring the miracles we know God can work), most Multiple Myeloma patients do die from it or from illnesses related to it. Because the body can only handle so much cancer and treatment, there are several things, including kidney failure, that can be fatal. Kris will also have a higher risk of getting other blood cancers like leukemia as time passes.
Obviously, God has the final say. We pray for a miracle, but ultimately, we want His will, not ours. That's how we live now. We aren't going to just sit down and wait for Kris to die. And we aren't going to live in fear of that day. But I think it's going to change how we approach life. Knowing we could have as few as 10 years left together and that our kids could lose their father, it will impact how we move forward. I believe it will make us more intentional in our relationships. Even if God works a miracle, this changes things in how we move. It is extremely important for us to do two things and do them well: cherish and invest in time with our kids and loved ones, and serve the Lord until our last breath.
There are risks with the bone marrow transplant itself but only 1% result in death so the prognosis for that procedure isn't too scary, though the process before, during, and after the transplant is a little intimidating, especially to me as the caregiver. But none of it is more than what I can handle because my strength doesn't come from me. And beyond that, my sister who just happens to be a nurse moved 6 minutes away from us, literally within 2 weeks of this diagnosis. God has been putting things in place, to continue to provide me personally with an abundance of reassurance, support and emotional safety. I have not had one moment on this journey where I have felt alone.
We also learned something else today, which was not conveyed to us previously. Kris will actually be getting traditional chemotherapy before the transplant. It's a day long treatment that they will do in the hospital before the transplant. This was also something we were not aware of. He will get sick. He could possibly get mouth sores, lose weight, and he will lose all his hair within a month or so of the chemo. But we are confident we will also get through all of that. The risk of infection while Kris' new bone marrow begins working is 1%. This feels like a relief, especially after his hospital-induced pneumonia.
Kris needs to do two more cycles of treatment at the Cancer Center at Mercy to get his counts down lower, which we think should be about 6 weeks. So we're looking at the beginning of the year at the earliest before they start the stem cell harvesting. Basically they hook him up to a the same machine they use for dialysis. It will run his blood through it, extracting the stem cells, then returning his blood to his system. They will extract enough for two transplants, freeze it, and then use half of it for the procedure. I have no idea what they do with the other half, but presumably they will freeze it for future use if needed or in the event they need it this first time around?
If they don't harvest the stem cells before he starts the chemo, the chemo will destroy all of them and he literally wouldn't be able to survive the transplant. It's like a 5 day process to harvest the stem cells, going every single day to get injections. Then the actual procedure to harvest will take about 6 hours, and I can't even be with him for that due to the space at the center.
After that we will schedule the bone marrow transplant. He has one week in the hospital for the chemo treatment and they will manage his side effects from that. Then they will do the transplant and once his counts begin to go back up, they can release him, so they're still saying he will be there for 3 weeks. The next month at home he will continue to experience the effects of the chemo, but then his health will stabilize and in a few months, his hair will begin to grow back.
They also confirmed today that he will still get treatment of some sort, even if it is just maintenance, for the rest of his life. Additionally, he will be on the Revlimid the rest of his life.
The good news on the transplant part/hospital stay is that visitors are allowed and there are no set hours. He won't be isolated or in a bubble. It will be up to us if we have people wear masks, and I'll feel better if visitors do. But if anyone even thinks they have even a hint of a cold, they should not visit.
We don't know what the future holds, but we know that this world is not our home. To live is Christ, and we will make that most of the time we are given. To die is gain and we long for the day to hear Him say, "Well done, good and faithful servant."
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