Jessie’s Story

Site created on October 27, 2020

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.

Newest Update

What did you say?

Journal entry by Jessie Parker —

Y'all... the word we've waited for... Yesterday, Dr. Jayani said the word REMISSION! My labs have been in the normal range since my transplant! God is so good. The power of prayer is real. God knows and has walked before us. I have work to do, because he is obviously not done with me yet. I guess He didn't want me to be bored during the global pandemic, so He gave me a project. 

Check out this graph of one of my labs.... take that Amyloidosis!

Most of you know that I dove right back into work. We are so busy. Just like I like it. Wesson is going to try travel baseball this fall and has signed up to play soccer. Since we'd be out there every Saturday, I said well lets see what Sanders acts like out there. The videos are always hilarious of little people playing soccer, so stay tuned for that. Sanders has also started tumbling at SayiWont and ballet at PPAC. Wesson had his first middle school dance.  Laynee's dad chaperoned, so we dropped him off at their house with flowers. Homecoming is next week, and Laynee has asked Wesson to escort her. We'll be picking out our dress-up days outfits all weekend if anybody is looking for me! He is loving Bridgeforth! We met all of the teachers at Open House and were very impressed. We are also celebrating Lori being named BMS Principal! It's an exciting time to be a Bridgeforth Bobcat!

Don't scroll past this part. This is where I tell you that the vaccine is necessary. Very smart physicians at Vanderbilt would not put this in my body if it wasn't a good idea. Yes, it sucks, but it can save your life. I will be getting a THIRD shot, even after my 104-degree fever, sweats, migraine, and chills that I had for almost three days. It still beats 8 days alone at Vanderbilt with Covid and a stem cell transplant. If you don't think you need the vaccine because you have antibodies, please go get your finger pricked regularly to confirm you still have antibodies. They don't last forever. We've worked too hard to get where we are. Vaccines keep you alive and likely out of the hospital. If you have a break through case, there are therapies available to pull you through. You have to play defense here... so we can be at Here's the Beef September 7-11!

See what I did there! Love you all!

Jessie

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