All that has been shared so far is a lot to unpack, but there have been some positive things to also happen along the way. We did learn early in our journey that our daughter’s condition could be potentially ‘cured’ under the right circumstances. What does that mean? Well as much as it is possible, it is also exceedingly difficult. She would need a bone marrow transplant, stem cells, and a shit ton of medication. Early on, we had our other children tested as potential matches because we were told that the best opportunity for this transplant would be through siblings. Unfortunately neither of my other two children shared enough markers to be the best candidates. We were also told by our doctors about an opportunity to check the national bone marrow database for a match. Then we were also told that because we were managing her symptoms and condition really well, we would not be a candidate to be able to use that opportunity. Reason being, that they want to leave that option for people that are in worse situations than my daughter. I get it, but to me that was shitty new. The fact that we stay on top of her medications and treatments somehow disqualifies us from this program is one of the dumber things we have had to deal with. So since transplants seemed out of the picture, I started reading and doing a lot of research on the latest medicines and treatments. There were some pretty amazing breakthroughs in the medical field around blood disorders using gene editing that showed very promising results. Not to get all in the weeds, but there is a company called Crispr Therapeutics that focused directly on the condition my daughter has and they actually created a ‘cure.’ There was a woman with the same condition as my daughter that was one for the first human trials. She went from needing up to nineteen blood transfusions a year and dealing with constant crippling pain, to no longer being transfusion dependent and no longer living with pain. Amazing. I would talk to my doctors about this treatment but also understood that it would take years before FDA approval and possibly even longer for approval in children. I was also once again reminded that because we stay on top of our daughters medications and treatment, that we would not be viable candidate to receive this treatment as well. Fuck. I am trying to take care of my daughter the best i can and it feels like i am being punished for it. Again, I get it, but I don’t have to like it. My wife and I never lost sight of potentially finding a ‘cure’ but decided to focus on the now and just take care of our daughter and manage her condition the best we can.
One day during a normal check up with our doctors, they mentioned how a few of the blood disorder doctors from up north were coming down for a conference, so I started asking a few questions. Our doctors mentioned that they often team with these doctors and that these doctors were the ones that actually did the transfusions for children to ‘cure’ them of their blood disorders. That really hit home with me. That night after all the kids went to bed, I had a conversation with my wife about what I discussed with our blood disorder doctors and just flat out said ‘i think we need to move.’ It was a little bit of shock to her, but we never lost sight of a potential ‘cure’ for our daughter and thought being closer to those doctors might be the right move for our family. Even with knowing that we didn’t have a good match for our daughter, that we didn’t qualify for the global database, that we didn’t qualify for the innovative treatment, i still believed that we would find a way to ‘cure’ our daughter.
Before moving I asked our team of doctors who would be the best doctor to transfer our daughters care to, and they provided us with a short list. I did a little more research on the doctors and then made the decision to go with one of the recommendations provided by our team. The process of relocation took a little longer than expected but we did finally make it to the new doctor and the team that would be supporting our daughter in our new location. This whole transition takes place about two and half years after our initial diagnosis, which would also include the fourteen months it took to actually move into our new home. Which means we are now pretty set in our ways in regard to our daughters treatment and knew what to expect while following a pretty strict schedule.
So we finally made it. Uprooted the family from everything they had ever known to a place where we nothing about. Best decision ever. Yes we left a lot of good memories, friends, and things like that, but this was a game changer for our family. Again, the process from the time of selling our house and actually moving into our new house was a complete shit show that really tested who we are as a family, but it’s those things that bring you closer together. Now being in our new environment one of the first things we had to do was meet with our new team of doctors and establish care. On our first visit they flipped everything we were previously doing completely upside down. They changed her treatment, her medication regiment, and how we manage follow ups. It was a little frustrating at first because we had spent so long getting in a groove and felt we knew everything there was to know about what we were dealing with, and then we relocate and pretty much everything was changed. I would say it felt like we went from working with a team of doctors that specialize in managing a condition to now being with a team of doctors that push for a ‘cure’ and a better life. We were once again energized because we were in the mix with doctors that are dealing with the latest in medicine and just felt that we had made the right choice.
It was not until our second follow up appointment that things really changed the course of our life and family. During that appointment, our new doctor asks a question in literally the simplest way that one could ask as a simple question. It was like we were old friends, and she was just so casual about it. She said, ‘I know your first two children are not matches for your daughter, but have you ever thought about having another child?’ What the fuck is this lady talking about is all I could think. No time in the first two and half years of care at our other doctors did they try and have that conversation, but also who the fuck wants to play roulette with having a baby in hopes of it being a match. Second thought, ‘this b!t#h is crazy, we made the wrong choice.’ But sometimes, things are not as crazy as they initially sound.
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