In November 2022, God spoke to me and told me to take Aiden to the hospital. He had a lingering cough and random fevers that would come and go over the month. I took my parents to Philly airport and stopped by Nemours in Wilmington. I figured they would run some tests and I be told he has some infection, we would get medications and be on our way.
When the nurse examined him she asked about anything else going on. I mentioned he has had a lot of bruising lately, but he does karate and is a typical boy. We looked over his whole body and I did not realized he had so many bruises! He had become independent with showers and dressing. So naturally they asked if he was safe at home and school. It made my heart sink, he absolutely is safe. I felt guilty that I did not notice them until now.
Blood work, nasal swabs, and a chest X-ray was done. The doctor eventually came by and asked if we could go somewhere and talk... Right then and there I knew something was not right. I went with her and she told me he either has leukemia or aplastic anemia. My world just stopped, time was irrelevant, I felt like an empty vessel. It took me a bit to process, and I was almost emotionless and in shock. I am sure the staff could tell I was not okay. I called my husband and told him he needed to come now. He said he could hardly understand me, I was so distraught. But he understood enough to hear the word, CANCER.
We were admitted and had to wait for the diagnosis. I never prayed for leukemia, but I was now. November 7th, 2022 we were told it was for sure leukemia (sigh of relief, but still scared). He had to undergo a bone marrow biopsy to determine what type of leukemia he had. Over the next 12 days (our admission) Aiden had a port placed, bone marrow biopsy, EKG, Echo, CT of the brain, ultrasound of the bladder, lumbar puncture, and IV sticks. Chemotherapy was started within a few days of his actual diagnosis of precursor B-cell acute lymphoblastic leukemia (ALL).
We met with his care team who mapped out our next 2.5 years of treatment. It was so overwhelming. I myself work in the medical field. I am a nurse practitioner, but I work with adults. However, all my knowledge of basic labs went out the window. I felt dumbfounded and upset that I could not comprehend. I had to be reminded by the staff, I am mom, not a nurse, and that is okay. It was tough though. But I pushed to ensure I knew all that was going on. I found myself advocating for my sons health and well being many times throughout treatment. Weather it was dealing with treatment plans, symptoms, and even medications at the pharmacy. But I stood my ground and made sure he got what he needed.
He just started Kindergarten and had to stop going, thankfully for us, he had an amazing teacher who met via video chat to help keep him on task. She did this in her own time. We would video chat with his classmates as well. They would put together cards and gift baskets for him as well. The outpouring of support, love and prayers were amazing. Over the next year we visited the hospital at least once a week, on Fridays. Sometimes we had to go three times a week for treatment. We had great days, and awful days. A severe allergic reaction to one of the chemo medications he had, so scary. His hair thinned, then he eventually lost it all. But he was still handsome as ever.
He repeated his bone marrow biopsy and did not make remission. We were devastated, he missed it by 0.02%. So, we prayed. They had to hit him harder with chemo for the next round. February 27, 2023 he made remission! The clock for 2 years started. March 10, 2025, we will hear the sweet sound of the bell ringing! He will complete his last dose of oral chemotherapy. After that, he will have routine blood work to ensure his body stabilizes and he stays in remission.
November 2023, Aiden had his wish granted. He wished for his sister to go to Disney to meet Elsa and Anna. Bless his heart. However, while in Disney he was admitted on his 1 year anniversary of his diagnosis because he was leaking spinal fluid from a lumbar puncture. I had planned a superhero dinner to surprise him and to celebrate.
He is one of the toughest kids I know. He takes a needle like a champ and has had to overcome some big obstacles. He used to be admitted for a temp of 100.4, now we just go in for blood work to make sure there is no infection. However, in the spring he started showing signs of relapse. Our hearts sank and were heavy waiting for the results of a peripheral smear to see if he relapsed. Luckily, he was still in remission! They later had him admitted and his oxygen dropped into the 80’s while sleeping, yet again my heart sank. We were doing great and now had another bump in the road. He had to be put on O2 while he slept. They did a bronchoscopy and found he had an infection (cytomegalovirus; CMV) that normally is not an issue for people. But with his immune system weakened from chemo, it was wreaking havoc on him. But he was treated and did great! He recovered and came home!
Now he is a big 2nd grader and doing amazing! He has some pretty amazing hockey hair, so naturally he has started playing hockey and is loving it so much. He tells me when he grows up he wants to be a pediatric Oncologist to help kids like him. My job is to make stuffed animals for the kids that need them. He is such a sweet, kind, loving, empathetic, and caring kid. He is a blessing in our lives and we thank God everyday that he helped him fight and win!
Aiden
B-cell acute lymphoblastic leukemia (ALL)
