From Brinley's Mom, Carmen:
Brinley began having low grade fevers and cold symptoms in October 2014. After 3 months and several trips to both her pediatrician and urgent care, she was worse. She began sleeping more and more, complained of leg pain, and became pale. We returned to her pediatrician again and demanded answers. Blood work revealed that she was anemic, so we were referred to NCH to Infectious Disease clinic because of her low grade fevers.
The Infectious Disease doctor had Brinley admitted for additional testing. A few hours later, we heard 4 words that has changed our lives forever - your child has cancer. Brinley was diagnosed with Very High Risk pre-B cell Acute Lymphoblastic Leukemia. She also had CNS leukemia at diagnosis, which is very rare and made her have to endure an even more intense chemotherapy treatment plan than most. She also had to have total brain irradiation to treat the CNS leukemia at the James Solove Cancer Center in March 2016.
Sadly, in September 2016, she relapsed when she was halfway through maintenance therapy. NCH reached out to both CHOP and St. Jude’s to come up with the best treatment plan for her unique and rare relapse. She has had several complications, including a central line infection, recurrent c-diff infections, and the worst being a very rare autoimmune disease called Sweet Syndrome, caused by a drug she received to help boost her immune system after receiving intense chemotherapy.
She was one cycle of chemo away from again reaching maintenance therapy when she was diagnosed with MDS (myelodysplastic syndrome) as a result of the treatment she received for leukemia. The only chance at a cure for MDS was a transplant. There was no 100% matches, but on February 2, 2018, Brinley received a HAPLO stem cell transplant from her mommy. Since transplant, she fell and broke her wrist, which has made recovery even slower, but through all of the ‘hurtables’ as she calls it, all of the hospital stays (258 days to date), she smiles her million dollar smile! B’s motto is “you gotta do what you gotta do”. Brinley LOVES love and shares it with those around her through her best friend… her favorite blankie. She pulls ‘fuzzies’ off of her blanket and gives them to security guards as we get on the elevator, nurses, doctors, cleaning staff, and all who she feels could use ‘snuggles and love’. She tells people when they feel bad to rub on the fuzzy because it has snuggles and loves in it!
Cancer has physically changed Brinley’s little body drastically. She has many physical and emotional scars. But it has never dulled her shining spirit and determination! She is the epitome of ‘never quit!’ She wants to work at NCH when she grows up. She wants to work in the gift shop one day, in the cafeteria one day, and with her nurses and PCA’s one day. She’s always looking forward and always has a plan. She is our sunshine girl!