Since being home from Denver, we had appointments to check on Tessa’s blood counts. Last week her platelets had dropped into a very low area. Because of this, her third bone marrow biopsy that was scheduled for the end of the month will now be on Monday. The doctors we have been seeing have suggested that now is probably the time to begin a treatment. Right now they are considering treating her like she has acute myeloid leukemia. We will wait to see what the results of the biopsy tells us and decide from there what the next route is.
The experts our team had reached out to are mostly suggesting a bone marrow transplant. While we know that is the only cure for Myelodysplastic Syndrome, it also carries the risk of, and I quote from our doctors, “a very bad outcome” because of her extra chromosome. It’s scary to think that the one thing she needs the most could end up being the worst thing for her. Right now we all don’t feel like the benefits of a transplant outweigh the risks. She is carrying on day to day as a toddler would do. While she may be excessively tired and slowly becoming more symptomatic, she is not ailing.
Like we’ve been told before, we’ll need to pack a few bags just in case. But this time it was more like “you will need those bags.” So here I am all week frantically trying to collect myself, my home and squeeze in every last minute of snuggling with my girls that I can because come Monday, I don’t know if we will coming right back home. It’s funny you know, shouldn’t I be doing that every single day…soaking up precious time with my kids? Why is it that when this “time” is suddenly threatened that I realize this?
My brain is so scattered. Do I want Monday to be here or not?
We really do not know more than we did before other than it is apparent that whatever is going on in Tessa’s bone marrow is getting worse. In a few days we will hopefully know more and finally start heading towards a treatment–not that any of us are looking forward to it, but it’s time.
Can I just ask a small favor from each of you…
Would you please be willing to say a little prayer, send some positive energy, or keep Tessa is your thoughts on Monday? Every little bit is welcome.
We are so gracious for everyone’s support and knowing that hearts and minds are with our tough little Tessa Bug.
Many have asked about joining the National Bone Marrow Registry. For more information or to get started, please visit: www.bethematch.org