What a long day. We drove down to Boston for our transplant consult today. Where to begin? There was so much information that it was overwhelming.
First of all, we will be using Valentine as a donor and she will be sedated for bone marrow aspiration. It's a relatively painless and easy procedure but it's still scarey. When Riker is given the bone marrow, it is given just like a transfusion. It finds it's way to her bones and takes root. Riker's blood type will change from O+ to Valentine's type of A+. If Valentine was male, Riker's blood would now indicate that she, too, is male. It is amazing.
The risks and restrictions for Riker and the rest of our family after transplant are daunting. We will have 6 months of nearly complete isolation. We are not allowed to have anyone besides our immediate family (those of us that live there) in our house. Riker cannot be in any enclosed spaces besides our house, our car, and the hospital. The car and the house must be kept as sterile as possible at all times. Valentine will need to be pulled out of school and only exposed to people that are healthy.
We will not be able to stay in our current house during any of this, either. It is just too dangerous. We have begun the very stressful process of trying to find something newer. It appears we will need to put a modular on a small plot of land. Because of the market, we're finding that this is actually less expensive than buying something that already exists. We will need to have the house ready and everything moved in 2-3 weeks before I can bring Riker home from Boston.
The worst of the restrictions is no breastfeeding. I am devastated about this one. I can still pump milk for her but it will need to be irradiated so that the lymphocytes will be killed. These are mature T cells that fight infection and there is a risk that they could attack Riker's new bone marrow as it tries to grow. I will lose that special time with her - my own special way of giving us both comfort through these horrible times. I breastfed Valentine for 15 months and anyone who knows me knows how important breastfeeding is to me. And not least of all, pumping sucks. I will, though, pump until Riker is over this hurdle. I will do everything in my power to make sure she gets breast milk until she is 9 months old and then even try for the 1 year mark. That is a lot of pumping :(
My plan is to "wean" her after her next round of chemo when she starts to feel better. I don't want to take it away from her when she's feeling lousy but I want to breastfeed as long as I can. I will not wait until the last minute because I don't want her to wean while she's going through the horrors of transplant. When she starts to feel better after transplant we will begin working on sippy cups and solid foods. She'll be around 8 months then. Crazy.
Our timeline as of now looks like this:
- possibility of going home for a few days at the end of July
- beginning of August we start a consolidation round of chemo
- end of August when she recovers, we will go down to Boston for another consult and testing on both the girls.
- more testing until the middle of September when Riker will go down for 10 days of conditioning chemo
- after 10 days, around the end of September, the transplant will occur. Valentine will spend one night down in Boston for this procedure.
- Riker and I will remain in the hospital for 4-5 weeks and should be leaving the beginning of November. It is still not clear if we will be staying in Boston at the Ronald McDonald house or if we'll be returning home at this point. We will not be coming home until we have a safe place to live.
- Once home, we will live in virtual isolation until mid-March or so.
After this process is over, we will need regular labs drawn. If Riker does not relapse, she will not need further treatments. The transplant should be the end of her leukemia and she will be considered "cured."
Missing Thanksgiving and Christmas, being completely isolated from our family and loved ones, will be worth it. It will all be worth it if my little Roo can just be ok. <3