So I shared the big secret, we talked about the relocation, and covered the journey to miracle baby number four. So what is left? Well, that is where we are today. The known unknown. This has been a long journey taking place over the last five years, and it looks like we may be coming to some sort of ‘conclusion’ to this story. I really hate to use the word ‘conclusion’ because regardless of what comes next, we will always have something to do in connection with our daughter’s condition. I can tell you that the future looks brighter for our daughter than it has ever been, but unfortunately she is going to have to walk through hell before she will be able to feel the sunshine.
To be upfront with you all, everything I’m going to share is actually happening in real time. Meaning we are currently having appointments and consultations right now as we start to shape out next steps for our little girl. The most promising update is that our daughter is now officially scheduled to undergo the transplant procedure that is going to ‘cure’ her of her blood condition. Early next year, we will check into the hospital for what I am being told will be an extended stay in the intensive care unit. Fucking terrifying. I am told that we can expect to stay in the intensive care unit of the hospital for close to two months. My wife and I have already talked through our plan for this time period, and I’ll be the one with our daughter at the hospital. It will be tough being away from the family for so long but fortunately we have a thing called technology and do video calls with the family. The hope is that all goes well, and we will get discharged closer to the forty five day mark. Easy day, right? That’s not even half of it.
So what does all that really mean? Let’s start with what we are calling our first day, or day minus ten. On this day, she will undergo a minor procedure to put in her port and remove one of her ovaries. At the same time that this is going on, our miracle baby will also undergo an outpatient procedure to harvest some bone marrow from her hip area. This is considered a minor outpatient procedure, and she will bounce back pretty easily. Our daughter will then be prepped to start a ten day regimen of chemotherapy to kill off all her existing bone marrow in preparation for transplant of the healthy bone marrow and stem cells that were previously collected from our miracle baby. This is where we start our journey through hell. At day zero, the first day after she completes chemotherapy, she will undergo the procedure for grafting the new bone marrow and stem cells to her body. After the procedure, she will be monitored constantly as well as be on a host of medications to help suppress her immune system to aid with the grafting process. All the medications are to help the body not reject the new bone marrow and stem cells. This is also the reason for the extended stay in the intensive care unit because her body will not be able to fight off any infection because of all the medications. At day forty five, or later, we will get to leave the hospital and check into temporary housing for the next six to nine months. When we are discharged, she will still need to take anywhere from seven to ten different medications to help her body to not reject the transplant. Because these drugs affect her immune system, we have to stay pretty close to the hospital so we can get her back immediately if she develops a fever for any reason. This is why we are going to temporary housing. Right now we live right outside the boundary of distance to the hospital for being able to stay in our own home, so just another thing to figure out. Over the next year after grafting she will continue to take a host of medications to help with the transplant. She will start to wean down around the six month mark, and by the time one year mark, she should be off all medications completely.
This is all so crazy. We are still getting more and more information as we speak but trying to still take it day by day. This shit is heavy, but I try to keep focused on the end game. A better, longer, and healthier life for my daughter. Basically what all parents want for their kids. If everything works out for her, then she will be ‘cured’ of her blood condition. Although she would still have to have a yearly check up to make sure things were still good, I will take that any day over what she goes through now. She will also still always test positive for the blood condition and there will always be the possibility that she could pass it along to her children if she chooses to have them, but she will still be ‘cured.’ And I will take it.
Speaking of having children, I’m sure you were like ‘WTF’ when I casually threw out that she would have one of her ovaries removed. What can I say, science is crazy. Yes, my wife and I have made the decision to remove one of her ovaries now in an attempt to try and preserve her ability to have children of her own when she is older. Because she is going to go through chemotherapy, there is a strong chance that she may lose her ability to be fertile. There is still a chance that she may develop normally, and the chemotherapy won’t affect her chances of having a child later in life, but there is no way to know that now. Because of this, we decided that we wanted to be able to give her the best chance possible of having a child of her own, if that’s what she chooses later in life. It’s really a minor procedure, but essentially what they would do is go in and remove the outer layer of one of her ovaries and then put that in cryostasis until the time came that she wanted to have children of her own. At that point, they would thaw the ovary tissue and regraft her ovary back with the hopes of being able to produce viable eggs for pregnancy. It’s a little weird to be talking about pregnancy when we are also talking about a five year old, but these are some of the tough decisions we have to make now. This is also not a slam dunk procedure either. They would remove eighty percent of her ovary and from that eighty percent, only about one third the ovary will be ‘functional’ after the re-grafting. Not a high percentage, but one third is greater than zero. Again, I think any parent would do whatever they could do for their children.
So folks, this is where we are as of today. We still have more meetings and consults to take part in, but there is a plan in place. There are real dates in place, and what we thought was once an impossible dream is potentially coming true. We appreciate all the love and support we have received over this journey and over me sharing this story. My daughter’s story. My daughter is by far the toughest kid, no toughest person I know outside of my wife. We look forward to brighter days, bigger smiles, and a long happy future for our little girl.
Although this is the end of my story telling journey on this topic, we know a lot of you would like to keep up with our daughter’s journey. I have created an Instagram account for her if you would like to follow along the next chapter with us. We thought that this would be the easiest place to keep everyone up to date where I don’t have to answer a lot of questions about how she is doing. I don’t do well with a lot of questions, and this also allows me the space I need to just be there for my daughter but also share her journey. Please keep those prayers coming. Much love and appreciation to you all.
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