“September is Pediatric Cancer Awareness Month. Aside from donating to St. Jude’s or Make-A-Wish during the holidays, I didn’t know anything about childhood cancer. Unfortunately, since my son Frankie’s diagnosis, I am becoming far too familiar with this horrible disease.
On April 19 of 2020, Frankie was complaining of a stomach ache but still being his usually Frankie self. A few hours later, we noticed a slight fever. We gave him some meds, and he went to sleep. The next morning, around 1 a.m., Frankie, woke up crying and kicking, complaining about his stomach. My husband went to pick him up and noticed Frankie was hot again. You could feel the heat radiating. We took his temperature — 103.6. We gave him another dose of meds and got in the car heading to the hospital.
The whole ride over, I kept thinking he had contracted COVID. Once we arrived, I noticed a heat rash on his neck from the fever. (It wasn’t a heat rash — it was petechiae.)
They gave Frankie some medicine and sent him for blood work, X-rays, an ultrasound for his stomach. The ultrasound came back inconclusive. Good news: the fever had gone down. The blood work showed Frank had low red blood cell count, a hemoglobin level of 6.6, low blood platelets, and the doctor could feel the lymph nodes in his neck and groin.
It was not COVID.
The doctors said it was consistent with leukemia.
A few days before going to the ER, Frankie complained his left foot hurt.
‘It was cancer. His leg hurt because his bone marrow is full of cancer,’ I thought to myself. Frankie just turned 4 years old about one month before his diagnosis. He was very active, healthy, happy. Cancer?
I don’t remember much after this. My ears were ringing and I could feel my heart in my throat.
They sent Frankie to the ICU because he needed a blood transfusion and platelets. They said they would monitor for a few days but let us know we may need to fly to Hawaii. We were living in Japan. When we got up to the ICU, the doctor came in and told us they were working on getting us on the first flight out of Okinawa to Hawaii because they don’t have the care of an oncologist for Frankie.
Just like that, within 72 hours, we flew to Hawaii, leaving our life in Japan, never to return. When we arrived, we were greeted by hospital staff in hazmat suits. Frankie was tested for COVID (it came back negative) and he started treatment the next day. His official diagnosis is High-Risk B-cell Acute Lymphoblastic Leukemia (B-ALL).
He completed the first couple of treatments in Hawaii. The views there were beautiful and peaceful. Frankie’s treatments are not. Frankie hasn’t walked unassisted since the day before he went to the hospital. He has made great progress since then. He gets around with a walker and is currently going through physical therapy. Some days he’ll even say, ‘I got it. I don’t need help.’ We expect him to be able to walk unassisted again soon.
During his first 2 weeks in the hospital, his long black hair became tangled and matted. We decided to cut it into a little afro for him until we ultimately had to shave it due to treatment. As a family, we pushed through hospital restrictions, most of the time swapping days at the hospital. So far, treatment involves steroids, chemo given orally, shots in his thighs, lumbar punctures in his spine, and a drip through the IV.
He’s 4 years old. He battles nausea, vomiting, loss of appetite, mouth sores, extreme weight loss, fatigue, pain. This is me sparing you from raw details.
Currently, Frankie is in the third phase of treatment. We are in California, where we will live until the remaining 2 years of treatment are complete.
Treatment is draining emotionally and physically. Throughout it all, Frankie is remaining positive for the most part. We quote it as ‘doing my best.’ In our house, that means doing our best in the most literal way. Some days, I feel really good and other days, I just zone out. Sometimes I scroll through previous memories of us traveling, so happy, so free, videos of Frankie running or jumping, and feel the pain of our reality set in.
I never imagined Frankie’s being diagnosed with cancer, or sick at all.
You know when you get pregnant, people always warn you to sleep when the baby sleeps. Vaccinate, don’t vaccinate… cut, don’t cut… formula or breast… BOB makes the best running stroller and you need the most aesthetically pleasing baby gear to turn heads!
But no one talks about how to navigate your baby getting sick… I mean really sick. Who would have thought? This is OUR new normal, cancer. Still, we are doing our best.
Another COVID test? Doing our best.
Third time vomiting meds? Doing our best.
Wanna just lay in bed and do nothing today? Doing our best.
Frankie might be a little young to truly understand the time we are going through right now but he understands the concept of doing his best. Some days, I am worried he is losing his childlike innocence. Other days, I am reminded just how young he still is. The smallest things, like playing race cars in bed while getting a blood transfusion or having his Super Mario blanket near, bring him so much joy. He wakes up eager to play, or help me cook, or just dance in the bed together. I’m constantly worried about the what-ifs while Frankie is just wondering if the room he’s in has WI-FI.
I admire Frankie’s spirit so much. He has already taken on probably the biggest challenge of his life. Every day, he is fighting and right now, he’s winning. It’s overwhelming watching him take deep breaths when he is scared, and also talking through his feelings when he is mad or sad. I am so proud of him and the lesson he continuously gives our family on what it means to be present, in the moment, and doing our best.”
This story was submitted to Love What Matters by AJ Rodriquez from San Diego, CA. You can follow their journey on Instagram and YouTube. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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