A member of the CD Warrior family, Shannon Baker has offered to share her story of struggle, and hope. Every fight with Castleman’s is unique, but so many of the hardships are shared. Every sufferer will understand those moments and Castleman Warriors are here to let you know you’re not alone!
Falling ill three years ago, Shannon wasn’t diagnosed right away. Like so many Castleman’s patients she had to wait a long time to receive her final diagnosis of Multicentric Castleman’s Disease.
After 5 days of an ever-worsening condition she was rushed to the University of Michigan Hospital, and a long series of tests and exams began.
She endured procedure after procedure without any answers, including an inconclusive bone marrow biopsy, lymph node biopsy and removals and MRIs, with draining symptoms all along the way.
She had ascites, fluid in her lungs and bowels and it “was terrifying to lay down for the entire hour that the scan lasted. It's a drowning feeling that I hope no one has to go through.”
“ I remember getting winded going from the hospital bed to my own bathroom in my room, talking was exhausting, it hurt to cough or sneeze. I was still on oxygen. That stay in the hospital definitely taught me more patience.
But I never lost my faith or gave up hope that I would get an answer and an end to all my pokes, procedures, tests and surgeries. Keep the faith, never lose hope! When you hit rock bottom, you may feel like you have nothing, trust me, you still have a lot more that you thought, keep going! “
She has kept her inspiring upbeat attitude through her entire ordeal! Thanking her friends and family, other Warriors and Dr. Fajgenbaum for their support along the way, she mentions all the little sacrifices and kind gestures that kept her going:
“ There is no way for me to ever repay you for all the times you had to miss work to take me all the way to U of M. Thank you to those who have volunteered to help watch Quinn as she's not allowed in the infusion area while I get my treatments. […] Thank you for everyone who has prayed and continues to pray for a cure.”
Support from family is often the biggest help. For Shannon too her young daughter has been a major source of joy and hope,
“ I truly thank God for giving me these last 3 years to see my daughter Quinn learn, grow and absorb life so lovingly. “
She is now in remission with her chemo treatments spaced out to every six weeks. Though acute symptoms have lessened, and she is back at home, she still struggles with “fatigue, depression, insomnia, stomach issues, bone and muscle aches and a weakened immune system. “ Although her disease isn’t yet cured, Shannon’s positive attitude won’t be defeated.
“I will never lose hope, my faith has grown tremendously, I will never stop fighting this disease...it picked the wrong person!
I truly feel blessed and while I may be emotional today, thinking back to what I've gone through and thinking ahead of what I may have to go through if I ever relapse, I'm forever grateful for everything! “