Childhood Cancer Spotlight: AJ
On December 30, 2023 AJ had been feeling weak and “off” all day, it wasn’t until he almost passed out on the front porch that we determined a trip to the ER was necessary. For a few weeks, he noticed he was not feeling himself and over the past week he developed “knots” in his back that made it impossible for him to sleep on his back comfortably. We went to a small ER in our hometown where they pulled blood for labs and did a CT scan of his neck and back. After the Doctor delivered the news that AJ’s white cell count was very high and that he needed blood products ASAP, they told us he would need to be transferred to a larger hospital like Texas Children’s or UTMB. The nurse told us her heart sank as soon as she saw his preliminary lab results. Although they didn’t give us a diagnosis at the time, we talked and assumed it would be some sort of cancer as we awaited word on where he would be transferred.
Upon arrival to the PICU at Texas Children’s Hospital around 7am, AJ began receiving platelet and RBC transfusions which made him feel better. By 9am the Oncology team had met with us and delivered the news that AJ had Leukemia, we found out it was AML around 11am and signed consents to begin Chemotherapy. In preparation to begin treatment AJ had ultrasounds of the lumps on his back, echocardiogram, EKG, MRI, a visit from the eye Dr to check the hemorrhages visible in his eyes, more transfusions and placement of a PICC line in his arm. Since laying on his back was so painful, they could not install a “central line” in his chest. Usually, they order a lumbar puncture to check for leukemia cells in the spinal fluid, but because of the lumps on his back they didn’t want to risk it (his blood was 94% blast cells at the time).
Over the next 10 days AJ received his first round of chemo, moved from PICU to the West Tower, got his braces removed, had a few MRIs, had his PICC line removed and his CVC installed, decided to learn to play the guitar, met one of the facility dogs, found out the lumps on his back were chloromas (clusters of Leukemia cells), and received news he had the FLT3 mutation which means a higher possibility of relapse. After discussing with his Oncologist, we decided that if the best option was to start looking at the possibility of a Bone Marrow/Stem cell transplant we would be tested. Unfortunately, round 1 chemo did not put AJ into remission and one of the drugs affected his heart function, so they changed his round 2 treatment plan. Additionally, he was started on a drug to keep the FLT3 at bay which was an oral chemo.
We hoped to have a bit of a break to go home for a few days after Round 1, but his count recovery was inconsistent, and they wanted to start Round 2 ASAP. Round 2 started the day after AJ’s 15th Birthday and was a 7 day protocol. Since we were able to get his nausea meds all worked out in round 1, he was still able to eat really well during round 2. Preparations were being made for AJ to go home until he got REALLY sick. After many tests, we found out AJ had a fungal infection which would require a strong antifungal medication with side effects similar to chemotherapy. Shortly after starting that medication, AJ was not himself so the neurology team was contacted to monitor him. On March 11, 2023 AJ was rushed for an MRI where they found a brain bleed that would require surgery. We spent the night in PICU after going over the preparation and surgical procedure with the neurosurgery team. He received more transfusions than usual to get his levels high enough for surgery in the early morning on the 12th. The surgery was a success, and they kept him sedated for 48 hours to pull some samples from his lungs and to help him recover. For the next 2 ½ weeks, Speech, PT and OT came and worked with him every day to determine if he would be eligible for inpatient rehab. AJ did so well with OT, that he didn’t qualify. We knew this was going to be a long road to full recovery, but AJ was well on his way when he walked out of the hospital on March 31, 2023 for a week long break before starting Round 3 chemo. His favorite thing about being home for a few days was sitting on the porch, a much better view than the buildings outside the hospital windows.
Round 3 and 4 Chemo, went on without any adverse reactions and AJ was given the option to receive the treatment outpatient but opted to be admitted. Since he was found to be in remission after day 2 of Round 2, this allowed a more mild round 3 & 4. Before he was discharged after round 3, we met his Bone Marrow Transplant Dr and found out that he had been successfully matched for his transplant. The month of May was full of appointments to prepare for transplant admission. AJ was admitted to BMT on June 20, 2023 and received his stem cells on June 30th. July 12th AJ started running a fever and vomiting during a blood transfusion and complained of severe abdominal pain. An ultrasound found that his liver was shutting down, and the best thing for him would be to start dialysis ASAP. After a dialysis catheter was installed in his neck, he was transferred to PICU where he was on dialysis for 14 days straight. On August 16, 2023 AJ walked out of the BMT inpatient unit. Over the next few months, AJ was diagnosed with an additional fungal infection and some bacterial infections that resulted in chemo like treatments to clear them up. Due to that, he still hasn’t been able to receive his immunizations. AJ continues to visit the BMT clinic once a month for a procedure to clear the extra blood his liver is holding.
