Meet Adyn, he is7-Years-Old and currently battling pre-B cell acute lymphoblastic leukemia!
On December 17th, 2016, at the age of 4, our son, Adyn, was diagnosed with pre-B-cell acute lymphoblastic leukemia (ALL). Due to the amount of leukemia cells at diagnosis and the fact that he did not hit remission within the first 28 days of treatment, Adyn was considered to have VHR (very high risk) ALL. Thankfully, Adyn hit remission during his 2nd month of intense treatment. During Adyn’s first year and a half of treatment, there were many inpatient stays due to fevers, many blood and platelet transfusions, many lumbar punctures with intrathecal chemotherapy and several bone marrow aspirations to confirm that he was still in remission. All of this was on top of his already intense chemotherapy (and steroid) protocol.
Though there were some very difficult days/weeks/months during that first year and a half, Adyn did incredibly well and fought like a warrior with a smile most days. Adyn attended kindergarten with only (1) sick day all year and returned to the soccer field! We were beginning to finally find our “new” normal.
That was until August 2018, Adyn’s first day of 1st grade when I received the unexpected and devasting phone call that Adyn’s leukemia was back. Not only was it back in his bone marrow, but this time it was also found in his spinal fluid. Adyn was 6 years old at that point. A few days later, Adyn went inpatient to begin 3 months of very intense relapse treatment. Thankfully, both Adyn’s bone marrow and spinal fluid were clear of leukemia again by the end of his first month of treatment.
During Adyn’s relapse, we were told that Adyn would need to have total body irradiation and a bone marrow transplant. Because our local hospital, Golisano Children’s Hospital in Fort Myers, Florida, does not specialize in bone marrow transplants, Adyn would have to go to John Hopkins All Children’s Hospital in St. Petersburg, Florida for transplant. Adyn was required to be in St. Petersburg (which is an hour-and-half away from our home) for approximately 100 days.
Before going to transplant, Adyn needed a bone marrow donor. Thankfully, there were 100’s of matching donors in the “Be The Match” registry for Adyn. However, there was a match that was not in the registry that was even more special – Adyn’s 5-year-old sister, Abby was a 9/10 match! Due to them being only 10.5 months apart they have always had a special bond, but this was now a bond at an entire new level – a bond that absolutely would never be able to be broken!
On the morning of December 12th, 2018, Abby underwent a several-hours-long procedure where they extracted her bone marrow. Later that evening, Adyn had his “re-birthday” as he received Abby’s bone marrow. That day went remarkably well, as did the next few weeks (for the most part). On January 10th, 2019, Adyn rang the “End of Treatment” bell and was discharged from the hospital; although he had to stay local to the hospital for the next (3) months.
After approximately 100 days, Adyn was able to return home with weekly clinic appointments in St. Petersburg. Adyn was feeling fantastic and all of his labs continued to look perfect!
On June 4th, 2019 Adyn had his 6-month post-transplant bone marrow aspiration to confirm that he was still in remission (the previous one was done at 3 months post-transplant and was clear of leukemia). Once again, I received the very unexpected and absolutely devastating phone call on June 6th that Adyn’s leukemia was back again. On June 11th, we met with one of Adyn’s doctors at John Hopkin’s All Children’s Hospital. After discussing the options moving forward, it was decided that Adyn would be a great candidate for a new therapy called Car T. During this period of time, we also learned that Leukemia was present in Adyn’s left eye.
On June 26th, Adyn received his first radiation treatment to his left eye. Adyn received 7 treatments in total with the last being on July 5th. On August 5th, Adyn had a double lumen catheter placed in the jugular vein in his neck. While inpatient at John Hopkin’s All Children’s, Adyn’s T-cells were collected for Car T over a period of several days. At this time, Adyn’s T-cells have been sent off to be manufactured. Tentatively, Adyn is scheduled to get a PICC line placed on September 9th. He will then receive chemotherapy for 4 days outpatient in St. Petersburg. The purpose of this chemotherapy is to suppress his bone marrow to make room for his new cells. On September 17th, Adyn is tentatively scheduled to be admitted to receive his T-Cells. Adyn is expected to be inpatient at John Hopkin’s All Children’s for approximately 2 weeks at this time so he can be monitored for side effects from the therapy.
Adyn continues to have a positive warrior attitude and just celebrated his 7th birthday in June! We pray every single day that Car T will finally be Adyn’s cure. We are hopeful that Adyn will be able to attend a portion of 2nd grade and that he will be back on the soccer field real soon! As a family, we continue to push through every long and tough day because we will go to the end of the to find a cure for Adyn! We are VERY thankful for every single day!
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