November was the big month. Since Josh’s stem cell transplant in August, we collectively held our breath for November when we would receive the results. Did the stem cell transplant work? In our heads, we felt Josh put in the hard work going through a brutal stem cell transplant, he is young, healthy, and we believed that it must work. You put in the work you get rewarded, right?
It took me a while to share these results because in my dreams I was supposed to be sharing different results this month. While it’s not the best case scenario, it is also not the worst case scenario. Thus far, Josh has achieved a very good partial response. Josh’s numbers improved substantially, the light chains have continuously gone down in his blood and the plasma cells have dissipated in his bone marrow, but unfortunately, there is still evidence of disease in his body.
What does this mean?
We wait another two to three months, and hope his numbers continue to drop into the normal range. In two months, Josh’s bone marrow will be biopsied again and hopefully there will be no evidence of disease. Josh’s doctor is optimistic that this will be the case since Josh feels good and looks good. It just takes time. If in two to three months, there is evidence of disease, Josh will begin chemo treatments. Chemo isn’t fun, but we have been told that Josh can continue to work if he undergoes this chemo and the chemo would stop immediately when his numbers reached a normal range.
We continue to pray that his numbers reach a normal range w/out chemo and Josh achieves a long term remission. We hope this happens sooner rather than later. We continue to pray for a cure. I appreciate all the prayers, texts, and phone calls, even when we don’t respond to them. Sometimes it’s hard to reply in text, when we continue to not have clear answers.
In all honesty, Thanksgiving was tricky this year. I have to say, 2016 was the worst year of my life. It has been a heartbreaking year for so many people. I am unbelievably thankful for Josh, my kids, my family, and friends, but I’m disappointed that we can’t be done with Amyloidosis. I’m disappointed by the hatred and racism in the world. It feels uncertain and hard. I’m saddened that sometimes you do your best, but you still don’t get the results you dream of.
What do we do?
We move forward through the uncertainty. We teach our kids kindness and put kindness out into the world every day. We work hard to make our communities better. We work hard to address the injustices that exist in society. We scream out against injustice when we see it, no matter how uncomfortable it makes us to do so. We work hard to break out of the bubble of our little communities and volunteer/work to improve lives in the broader community/world. For me, I feel like I need to dust off my law degree and volunteer to protect those who are the most vulnerable – immigrants and minorities.
I am thankful. We are thankful.
Thank you to everyone who continues to support us on this journey.