Jessie Parker Jessie Axes Amyloid

First post: Dec 30, 2020 Latest post: Aug 19, 2021
Well, 2020 will be historic for all of us, but it will be of personal significance to my family.

I was diagnosed with Systemic Light Chain Amyloidosis, a rare non-cancerous but non-curable blood disorder in January 2020. I am a hard worker, and it seems it runs in my blood, literally. I produce too many kappa light chains, which are insoluble and build up around tissues and organs overtime into fibrils called amyloid. This has caused my liver to enlarge, as well as the progression of many symptoms I have complained about for some time. I feel that God used my liver to get this diagnosis before I became another statistic for such a rare disease. The amyloid is in my liver, muscles, heart, and bone marrow. I have no organ failure, which is such a blessing in this disease.  Amyloidosis is usually found in 60-70 years olds experiencing signs of organ failure. Research works! I pray my case becomes more the “norm” and mortality of Amyloidosis continues to improve.

Since January, I have been on three different combination chemotherapy treatments to get to where we are today. We have not been completely public, because we didn’t know where this road would take us or what would be involved. We have known all along that the ultimate goal is an autologous stem cell transplant, but a response to treatment was needed first.  

Dad fully retired last year after a career of working six days a week beginning each day before I rolled out of bed. He watched all the dance and soccer and knew so much about me, but I could not say the same for myself of him. We were big buds in the early days of the river and hanging out with PawPaw and him at the shop, but I still cannot say I truly knew him. Dad has chauffeured me to 30+ treatments this year amounting to time we have not shared in all of my adult life. We have learned a lot about each other, and I will always be thankful for this time with him.

February brings a major milestone for this journey. I will receive my stem cell transplant! I have prayed for this, and I am so thankful that God has brought me to it. I am confident in my medical team and this process.  I have one more round of treatment before my big day. I will post updates with plans and information leading up to the actual transplant, then Lee will take over from there. 

Simple answers to questions that can be tough to ask and answer. I will be out of work for a medical leave. I will lose my hair. Autologous means I get my own stem cells, no donor needed. The high-dose chemo will cost me my hair, but it will clean up my cells and allow me to have them back.  My God is so good.  I am  thankful He chose me for this and not someone weak in their faith, or my family, or my children. 

Your prayers for my medical team and family are greatly appreciated. 

 Peace and Love, Jessie

*For clarity, monetary “tributes” are made to the Caring Bridge organization in support of their ad-free platform hosting of journeys like mine.