Trying to decide whether or not to have our son go through a bone marrow/stem cell transplant was heart-wrenching. No parent wants to gamble with their child's life and quality of life. We're not fortune tellers, not that I believe in fortune tellers anyway. We don't know what the future holds. We also felt pressed for time to decide, because with Chronic Granulomatous Disease (CGD), especially with Kal having the X-linked version, he would most likely get a serious illness about every 1 to 2 years that would put him in the hospital. The fewer amount of serious illnesses and infections a person with CGD has, the stronger the body is to be able to endure and recover well from the transplant process.
For the transplant, there are actually a few options. The main idea is to get stem cells from one person and put them in someone else. Stem cells are highly concentrated in bone marrow, but can also be found in the blood as well as the blood from an umbilical cord. In a transplant, the patient can either receive the donor's bone marrow, peripheral blood (stem cells harvested from the donor's blood), or the blood from a donated (or banked) umbilical cord. Technically, the doctors usually refer all of these type of procedures as stem cell transplants, or something in that general description.
The process of pre-transplant, transplant, and recovery varies from patient to patient, based on a variety of things including age, why they are needing the transplant, overall health and health history, type of transplant, and much more.
In our decision process, I wrote down my thoughts of what scares me most about doing the transplant, and what scares me most about not doing the transplant (and when I say bone marrow transplant, I'm referring to any type of stem cell transplant):
What scares me most about the transplant? The whole process, haha! We'd have to be in the hospital a little over a week while they give him chemo to lower his immune system really low, so his body would be more willing (or maybe more defenseless) to take the donor's bone marrow (or stem cells). In that time, if he catches anything, he could die before the actual procedure. Then there's the actual procedure... just the thought of that makes me feel sick, let alone the fact that the bone marrow clinic wants to test my daughter to see if she's a match, because siblings have a higher possibility to be a match than other family members. So, she wound be getting lots of blood tests too, and would have to stay in the hospital maybe a week to recover. And the thought of having two kids in the hospital is almost too much to bear! Plus, I don't wanna feel like I'm "using" my daughter and putting her in extreme pain that she didn't agree to, for the sake of her brother. I mean, she's so young.
Plus, what if she isn't a match? They said it would be harder to find a perfect match because of the mixed demographics of my husband and I (Filipino mixed with white). Then there's also the whole possibility that the bone marrow transplant doesn't take as well as they would've liked, so they'll want to do another one. I mean, just the genetic testing for him is about 5k, plus if they were to test my husband and/or me, that would be another $500-1,000 each. The bone marrow transplant would be about 100-200k. I don't know how it will all work out with insurance. There's also the possibility of the donor's bone marrow attacking my son's body, and who knows how serious that could get. And then they said recovery is usually about a month in the hospital. My mom said she could fly in to watch Kayelee during that time so I could stay with him, but it would be so hard. I don't know if I could even visit with my daughter during the weeks of chemo and preparations, you know, just being worried about her being sick or carrying some illness home front the playground or nursery.
But, if everything works out, then he will have a normal person's immune system, and I think he would not have be on lifelong medications anymore. And he could not have to be worried about playing outdoors sometimes or being overly cautious to stay clean and trying avoid being sick.
What scares me the most about not having the bone marrow transplant is his quality of life, his lifespan, and the constant stress and worry about medications and when the next serious illness would pop up.
He can't help us garden, mulch, mow the lawn, swim in non-chlorinated water, play in the dirt, play in the leaves, and should stay away from forests in general that tends to have leaves or other decaying matter. He can't be outside if someone is mowing the lawn or mulching. His medicine even says to avoid long exposure to sunlight. He will also have to be on medicine and shots his whole life. Right now, he's on 5 oral medicines, and 3 topical creams. He will start having shots given at home to boost his immune system, 3x a week. In guessing once he gets better, he will just be on 3 or 4 oral medications for his whole life. He will most likely get seriously ill (like long hospital stay kind of stuff) about every 1 to 2 years. That means he'll miss a lot of school eventually. He's already developmentally delayed a little, pretty much just motor skills, because he's been sick so often.
Going to school is going to be stressful. His teachers will have to keep their classroom squeaky clean, but even still, schools are a crazy bacteria spreading ground. And I really don't want to or even think I'm capable of home schooling him. In addition, as far as life expectancy goes, it all depends on how many and how serious the inventions are that he would get. His body will come to a point that an infection might be too bad that antibiotics couldn't fit the infection because it is too great. Or, his body could just have too much damage from all those illness over time, and wouldn't be able to handle it anymore, so his body just would give up.
If we want to do bone marrow transplant, they said the younger they are, the better they seem to do. Also, my son, although he's been sick a lot, he hasn't had a serious illness yet (such as pneumonia or abscesses on his liver, lungs, etc. or ostomelytis.) His Immunologist said that they tend to do better with a bone marrow transplant if it happens before they ever have a serious illness. So, I feel like this decision is basically a race against time until he gets a serious infection within the next 2 years or so, because then the whole game changes after that.
Honestly, both options scare me a lot.
I mean, Jonald (my husband), gave Kal a blessing saying he would be healed, and in return, he would serve God in all his days, including going on a mission. I keep having this feeling that the only way for him to be "healed" would be with the bone marrow transplant, which would make him healthy enough to serve a mission later.
If all goes well, it will be totally worth it! It's just while doing my research where they tell you all that could happen that brings back the fear and doubt sometimes. It just really rips at my heart because we (both my husband and I agree fully on this) feel it's best to go through with the bone marrow transplant and we're just trying to have faith that no matter what complications might happen, at least we tried or best to help him. Our Bishop was very kind to drop by our home and give us each a Priesthood blessing. It gave me a lot of peace that I needed to feel.
Finally, we decided a bone marrow transplant would at least give him a better chance, despite the risks, to have a longer life, with better quality of life. All of our or prayers, scripture study, research, random circumstances that have happened recently, and Priesthood blessings seem to be pointing in that direction. When we both talked about it, we both felt when his Immunologist was talking about it initially that that was what we were supposed to do, but the things that came after to support those feelings helped a lot too.
I have been feeling so much more hopeful and happy since I can see his medicine is finally making him feel so much better. I do have moments where my mind will flash to imagining how it will be in the hospital through that whole process. I think, "Oh he's so happy now, and I know he will be going through bad stuff in the near future and feel like crap again and be grumpy again. It makes me think and doubt if I want to purposely put him through pain again with a bone marrow transplant. But then I have to remind myself to take it a day at a time, to enjoy this time of him being happy and not worry about when he will be unhappy temporarily in the future. I have to remind myself that this chance of the bone marrow transplant will hopefully keep him from feeling more pain and sickness over the years of his life.
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