Hello friends and family,

I'm writing with great news today. Robert and I went to MD Anderson in Houston on January 23-27 to meet with Dr. Jabbour and the Leukemia unit. Dr. Jabbour specializes in Acute Lymphoblastic Leukemia, including ALL with the Philadelphia chromosome positive mutation, which is what I had. (past tense!). He is the one that wrote my treatment plan last year when I had the horrific relapse in my central nervous system (CNS). Now that I'm in remission again, we wanted to go out to meet with him in person and make sure that my maintenance plan is the best possible plan to prevent any future relapse. Since it was Dr. Jabbour's research that proved the combination of Blincyto, Ponatinib, and IT chemo (the treatment I received last year) is successful in eradicating ALL Ph+, he could tell us with confidence that I am essentially cured of the cancer. PRAISE BE TO GOD! We were hoping to get good information while we were out there, but we had no idea that it would be the best information.

I will still need to continue with my maintenance, which will include an IT chemo treatment every 6 months to start, along with the Ponatinib pill every other day. I asked if these will be forever, and he said that we'll reevaluate in 5 years. 

The IT chemo is the one that makes me violently ill while it is being administered in my Ommaya reservoir port in my scalp. It's not my favorite poison, but I really don't care. I will do whatever the experts tell me to do to ensure the ALL Ph+ never comes back. Dr. Jabbour's research is scientifically proven, and he is an expert and world-renowned oncologist. We are lucky to be one of his patients.

I will still see Dr. Chowdhury and my team at Prisma for all my regular check-ups, IT chemos, biopsies, lab work, etc. I love them so much. On Monday, Dr. Chowdhury told me that I am a miracle and that patients that have the type of relapse I had (ALL with a relapse in the CNS) do not survive. She told me that I've been given a second life. Thank you, God, for this second life! I plan to make the very most of it, starting now.

Dr. Chowdhury also confirmed my suspicions that my recovery will take years. I am getting physically stronger every day - I'm taking Pilates classes, riding the Peloton, and I've started taking tennis lessons. It's slow but feels good to be active after 1.5 years of being mostly bed ridden. However, my mental recovery has not been as speedy, and I am mentally and emotionally exhausted after the past 2 years. My body and CNS have been bombarded with a LOT of high dose treatments, and recovery will be slow. The psychologist and Dr. Chowdhury have both said that this is normal, expected, and where I am now may be as good as it gets mentally. Friends have encouraged me by saying I can just blend in with the other middle-agers who also have memory and mental deficiencies. Ha!

I have recently been able to volunteer at/for all 3 of the kids' schools. The volunteering is feeding my soul in the best way. I'm just so thankful that I can do it and be physically present again.

Since I am only expecting good, routine news from here on out, I think this will be my last post. We are just shy of the 2-year mark of that fateful Disney World trip in 2021. We are forever grateful for our family - who sacrificed so much for us; our friends - who were limitless with their generosity and thoughtfulness; and our far-reaching group of prayer warriors - whose intercessory prayers reached us and our family over and over.

Love to you all!

Stephanie

(and Robert, Bo, Louise, and John Durham)