Thank you all so very much for covering us in prayer during this last week. Thank you for respecting my request to pray as God led on faith that He knew (and still does) what the kids and I needed.
Last week, Nick's oncologist spoke with us about a bone marrow transplant. He has mentioned this a couple of times in passing, but this time he made it official. The three of us discussed it for over an hour. Nick and I have a huge decision to make.
The oncologist wants us to consider this, because he believes, without a miracle, this will be Nick's only chance at having a normal adult life.
There will have to be a lot of research and investigating done prior to the actual transplant. While we didn't get into specifically who would be on the panel of doctors, I did some calculating and came up with between 7 - 10 specialists. That many doctors would be necessary because of Nick's numerous medical needs. I realize that there is a lot of information in this email, but I do want to share as openly as I can about what we are facing and why. I don't think I have ever given a list of ALL of Nick's medical issues. I'm not going to do that right now either, but that is where my thoughts on who would likely be on that panel of doctors comes from.
So, who do I think it would involve? 1. Oncologist 2. Bone Marrow doc (this may be a Radiation Oncologist, but I'm not sure) 3. Cardiologist (for consult purposes since Nick received some chemo that can damage the heart over a long period of time) 4. Geneticist (to consult on the effects of the transplant process on the cancer causing genetic condition that Nick has and Keith had) 5. Nephrologists (kidney specialist to consult since Nick also has long term kidney damage from chemo) 6. Gastroenterologist (because Nick's genetic condition causes gastro issues and Nick only has a small intestine) 7. Immunologist (doctor who specializes in immune system disorders; present likely because of the current state of Nick's immune system) 8. Liver transplant specialist (the effects of a bone marrow transplant on a previously transplanted patient can be very dicey).
That's eight specialists folks, and I'm stopping there because seeing it all in writing is beginning to overwhelm me and I really want to finish this. Plus it's nearly midnight and I'm getting tired.
Why a bone marrow transplant? Nick's immune system is continuing to have a lot of dysfunction. The basics as I know them: The bone marrow is where the cells for the immune system are produced. The basic immune cells are in the white blood cells (WBC). These two basic immune cells are T cells and B cells. Both have specific jobs to do with fighting infections and keeping the immune system strong. With Nick's chronic health problems and needing lots of medication/chemotherapy that causes these specific blood cells to be decreased, his bone marrow is no longer functioning properly. Nick's bone marrow is not producing very many B cells at all. This wouldn't be so bad, because the T cells are there to back things up. The IVIG helps with that and everything should be fine, except... Nick's T cell's are showing a decrease in production as well. The only way to fix an immune system is to replace it. The way to replace it is with a bone marrow transplant.
What about his liver transplant? I don't know. That is one of the many, many, many medical conditions that the doctors will have to take into consideration.
How long will the bone marrow transplant take? The actual transplant does not take that long from what I understand. The length of time is in the before and after. The actual bone marrow transplant is given like an IV I think. The actual hospital time varies. Nick's oncologist told us last week that from start to finish, it would be about 1 year out of Nick's life for him to be "out of the woods". From what I remember about the liver transplant, that's about right. It took about 1 1/2 years for Nick's body to fully recover from the liver transplant and level off with the constant medication adjustments. That first year after any transplant is the most critical. I can remember our first year very well. It was one of the toughest years of our lives. I rank it up there with the past 20 months the kids and have spent trying to learn how to live life without Keith.
What about the PTLD/Lymphoma? Good question, especially since this particular cancer is a result from being transplanted. I don't know the answer to that one either. One of my fears is that the bone marrow transplant will make the cancer come back or become more aggressive since Nick already has it. I don't know if the strong chemo and radiation needed to prepare his body for the new bone marrow would eradicate this cancer. I do know that PTLD can be an issue for bone marrow recipients, as well as a myriad of other health problems.
Can Nick die because of the bone marrow transplant? Yes. The process of the bone marrow transplant is a very tough one on the body. There will be a period of time when Nick has absolutely no immune system and any kind of infection can cause death.
Can Nick die without the bone marrow transplant? Yes. Aside from an accident happening, any kind of infection could result in Nick's death since his immune system isn't functioning properly. People who have normal immune systems get sick and die every day. With Nick that risk has increased, BUT we have been living with this risk for 15 years. Nick has had some serious infections during the last 15 years that had the potential to take his life. For us, this is not a new risk.
Will a bone marrow transplant cure Nick? I don't know. The doctor doesn't know. His hope is that it would give Nick ten "good" years without needing constant infusions of IVIG or having to make monthly trips to Birmingham. As far as a cure goes, I just don't know. I know that the doctor said it's the only chance of a cure. I don't think there is any kind of guarantee though. As with any kind of transplant, you tend to trade one set of problems for a different set.
While Nick and I have not made a firm and final decision, we have come to some conclusions about what is important to Nick right now. We both feel very strongly about Nick finishing high school in the most normal way possible. It's not just something I want for Nick, but it's something that he wants. We don't have a time frame for when the bone marrow process would start, but we know that it would take even the normal we have now away for at least a year. That is a high cost to ask a 16 year old to pay when he has already missed out on so many normal kid things. Nick has just begun driving to and from school every day. He is beginning to experience the fun part of being a teenager. In two years, Nick will graduate high school. We both want that for him. Nick wants to experience as much normal life right now as he can. He doesn't want to give up a year right now.
I am perfectly fine with that.
We aren't going to say no to the bone marrow transplant, but we are going to say not right now. I am going to make certain that Nick's wants are understood. Yes, it can be said that we are choosing quality over quantity.
Nick and I have spent lots of time this past week talking out some of the details of the decision we need to make. I have been very open and honest with Nick about what could happen with either choice. The bottom line of everything for me is that God has given me 15 more years with Nick than the doctors believed we would have. Every day that Nick experiences is a blessing. I don't forget that. I want Nick to be able to experience as much of his junior and senior years of high school as he can. Those were my favorite years in school. I feel like Nick has earned the right to be able to say what he wants to do.
That's it for tonight. It's now 12:35 AM and I am tired.
Please continue to cover us in prayer. Cover Nick's doctor in prayer. I haven't talked with Kacie about any of this. I've decided she doesn't need this burden right now. Please try to be cautious when she is around. The idea of Nick being in the hospital long term brings up a lot of bad memories for her. There is no need for to bring all that up right now.
Please feel free to ask me any questions. I will answer them to the best of my ability.
In His Grip,
Kristy Baxley
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