30 DAYS/30 STORIES® 2022
My son’s name is Justin, but most people call him Big Boss or JMR. His medical team gave him those names, so you can just imagine why. He was diagnosed with Acute Myeloid Leukemia, also known as AML. He was diagnosed with AML when he was 4 years old on May 1, 2020.
I had been going back and forth with his pediatrician all week because he was not his normal self. He was sleeping a lot, not eating, had pale skin and his eye color was off. The doctor told me to take him outside because it could have been from a vitamin D deficiency due to not going anywhere (not even outside because we were all in a middle of a pandemic). He also woke up with petechiae all over his stomach, but we did not know what this was until we were at the hospital. For us, his parents, it was little, tiny brown dots.
We rushed him to the hospital where they found out he was neutropenic and said we had to go to the emergency room. We ran down to the emergency room where they were sticking an IV in, hanging blood and told us he needed platelets and his oxygen was low. We were rushed by ambulance to Lehigh Valley Reilly Children’s Hospital to intensive care where a medical team was waiting for us. When we got there, the room was filled with doctors and nurses. There we met Dr. Zinn, who told us what no parent should ever have to hear, “I’m sorry to have to tell you this, but your son has cancer”. May 1, 2020 was the day our world turned upside down.
Immediately, Justin was admitted. From that moment on, he began treatment for cancer. I remember living at the hospital month after month. Although our family was going through so much at that time, the nurses and staff would always try their best to make Justin feel at home. They would play with him and keep him busy with games and projects. We would only go home for maybe a week to rest and then came back for chemotherapy.
Every time Justin had a bone marrow aspiration and a lumbar puncture, his bone marrow would show there were more cancer cells, and he couldn’t go into remission. Every month, our medical team changed his chemotherapy with hopes of his treatment working because Justin needed to get to the Children’s Hospital of Philadelphia (CHOP) for a bone marrow transplant. Our medical team cancelled two bone marrow transplants because Justin didn’t go into remission.
In November 2020, Justin was scheduled to go inpatient for a new chemotherapy regimen that his medical team did their absolute best to get approved through his insurance. We also had to hear the words, “we are running out of options to treat Justin’s cancer.” We said, “NO!” We were not giving up because we had hope and faith that this chemotherapy was the one to help get Justin to the transplant. November passed, then December, and Justin was still doing inpatient and outpatient in clinic for his chemotherapy.
In January 2021, Justin had a bone marrow aspiration and when results came in, it was the best news we heard in a while. Dr. Zinn said his bone marrow was negative for cancer. February of 2021 came, and we were successful with another negative bone marrow aspiration. In March 2021, we left for CHOP, where Justin received a bone marrow transplant on March 18th. Unfortunately, this transplant did not work, and Justin needed a second bone marrow transplant.
Justin was healing from the first transplant and preparing for the second. We were waiting to see who his donor would be as there weren’t any donors that could make it on time. We never gave up hope and then it happened! We got the phone call that stated that Omar, Justin’s dad would be his donor. On April 30th, Justin received his second bone marrow transplant and we waited. On June 5th, the doctors came in and told us Justin’s MRD was negative, and he was in remission!
Justin, or Big Boss, is currently 15 months cancer free! We still go to clinic every month for lab work. Justin is also getting up to date with vaccines. We are patiently waiting for September of 2022, because that will be his last bone marrow aspiration and oral chemotherapy. We are forever grateful for each and every person on our medical team and for PCFLV for everything they have done for us as a family, especially Justin.
Written by Justin’s mom, Zuleika
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip