I’ve rewritten this post several times, wrestling to find my voice. At the end of the day I invited you all in to this journey; the good, the bad the ugly. Last post was the good, this one is the ugly.
“GD-TCL is a highly aggressive lymphoma which is characterized by an extreme resistance to polychemotherapy and radiotherapy. Median survival is 15 months [4]. In a recent review of 33 patients with GD-TCL, 22 (66 %) deceased within five years of being diagnosed with the disease.”
-National Institutes of Health
“Five-year overall (allogenic transplant) survival rates for B and T cell NHL were 58% and 50%, respectively (allo-SCT 51% vs. 54% for B and T-cell NHL, and auto-SCT 60% vs. 47% for B and T cell lymphoma, respectively).”
-National Institutes of Health
Fun right? Cullen and I have spent days processing through this information after we met with the stem cell team on Wednesday. Thank you to all who prayed over us. We left the meeting aligned and that was my goal going in to it.
Here’s what we know
-Allogenic transplant is the only curative option for my type of lymphoma
-My mental health is going to play a huge role in physical recovery
-We are aligned with getting this transplant done at Vanderbilt (in Nashville) so I can be close to home
This summer (end of June, beginning of July) I will be getting an allogenic stem cell transplant. I have a first cousin who has been identified as a partial match. My team is happy with this match and recommend I not wait. Unfortunately, there was no full match for me in the registry. Thank you to all who tested and joined the registry to see if it could be you. You are incredible.
This is going to be a THREE month process. (July-end of September) It will involve high toxicity chemo and full body radiation. I will either be admitted or going to the hospital every day for 3-4 weeks. After that, I will be in recovery and under close observation for the first 100 days after transplant. After I hit the 100 day mark I will be allowed to come home.
In case you missed that, I am not allowed to live with my family/children while I am going through this process. I am GRIEVING.
I can however, still see God’s fingerprints on this part of my story. My lifelong best friend, Kristin, has a place I can stay near the hospital and it JUST HAPPENS to be empty of renters during the exact time I need it. This is saving me from living in a hotel for 3 months. You can call it coincidence, I call it God.
Our needs are unknown at this time. Right now please just pray over my mama heart. Pray for my marriage. I haven’t slept well thinking about every thing I will have to miss while I am away, the extra burden this places on Cullen and explaining to my kids why I can’t come home. The actual physical and mental toll this will take on me is occupying my thoughts as well. I’m not fine. So please pray over us.
If you want to understand more about allogenic stem cell transplants, you can read about them here.
Thank you for being a part of my healing journey
Danielle
Reimagining Resilience 