Kaylyn’s cancer journey began in 2017. It started out with severe joint pain in her ankles and feet. The pain got so bad we finally took her to a podiatrist and they recommended physical therapy. After 8 therapy sessions the therapist suggested we go to a rheumatologist for more testing. That appointment was December 18, 2017. The doctor did a complete blood count and within 24 hours we were called with the results no parent ever wants to hear. December 19, 2017 at 10:40 AM we were told to take Kaylyn to the Emergency Center at MD Anderson Cancer Hospital in Houston, Texas. Kaylyn was admitted from the EC that afternoon and was scheduled for a bone marrow biopsy and lumbar puncture. December 20, 2017 our fears were confirmed and she was diagnosed with Acute Lymphoblastic Leukemia.
According to the doctors the prognosis was really well at the time of diagnosis with 80-90% remission rate at the end of the first month of induction treatment.
However, after the induction phase of treatment Kaylyn didn’t respond to the therapies and failed to obtain remission. She was in the 2-3% of patients who did not respond to treatment.
The first month Kaylyn underwent an aggressive regiment of daily steroids, chemotherapy every 4 days, lumbar punctures, and bone marrow biopsies.
The leukemia doctors went ahead and proceed with the second month of treatment even though she failed the first one. The consolidation period consisted of more lumbar punctures with chemo, and weekly and daily chemotherapies. During that time Kaylyn developed side effects from some of the chemos, and she was still not in remission.
The next option the doctors suggested was a new treatment that was just released in August of 2017 by the FDA for Acute Lymphoblastic Leukemia patients. This treatment is called CAR-T we began preparing for this in March 2018.
Kaylyn received a central line so they could collect her T Cells. Once they collected enough cells they sent them off to be engineered with a inactive HIV virus which programmed them to attack the leukemia cells in her body.
She was administered the CAR-T April 26, 2018 and we have been in the hospital for 41 days so they could monitor her closely. She was also in ICU. The side effects of CAR-T can be severe and life threatening.
On Day +30 she went for a bone marrow biopsy which told us that CAR-T was successful. As of August 6, 2018, Kaylyn received her bone marrow transplant and now we are just waiting for her to recover her counts and in-graft.