Figuring out the treatment plan has been the greatest obstacle since obtaining my diagnosis in early December. All lymphoma is rare but the subtype I was diagnosed with is especially rare: primary cutaneous gamma-delta T-cell lymphoma. I would advise not to google it, the results are limited and grim. We had conferences with three major health networks to figure out the right course of action. While all three were excellent choices we decided to go with Mayo Clinic, specifically their Jacksonville location. They specialize in rare and I needed a doctor who has seen and successfully treated this, not just THINKS they can.
The agreed upon plan is chemotherapy treatment + stem cell transplant. The chemo protocol is 21 days and the goal is to complete 6 rounds of it, obtain remission for 1-2 months and then move towards the stem cell transplant.
The right healthcare team/plan is the primary focus when making decisions. My family’s well being and stability is a close second. We’ve decided to keep the family (kids) in Tennessee with their friends and built in support systems at least until the end of the school year.
I will travel to Jacksonville (Cullen’s parents live there) for a couple days every 21 days for treatment. I will have a companion each time in Jacksonville. Family has been recruited to come to TN each week I have chemotherapy. Since I am the primary caregiver to our children, especially our two youngest who are not yet school aged (2 and 4), I need help caregiving in my absence and during the worst part of my recovery.
I will receive interim care from a local health system in the case of complications in between rounds of chemo.
Major upcoming dates:
Port placement: January 19, 2024
First date of chemotherapy: January 22, 2024
Please pray specifically for my own patience with my kiddos. I’ve noticed my fuse is shorter these days. Also for some mental strength. Denial has been a major obstacle the last week as the reality of the situation is settling in.
Thank you to everyone who responded to the call to action to either sign up as a stem cell donor or pass the information on to someone who is willing and eligible. http://www.bethematch.org
Thank you for being a part of my healing journey
Danielle
Reimagining Resilience 