My name is Julie. I’m a loving mother of three outstanding kids, a successful businesswoman, wife, breast cancer survivor, and now mother of a true cancer warrior. Ellis, my now 9-year-old son (age 4 at diagnosis), was diagnosed on March 21, 2020 with leukemia. This diagnosis was mere days after the world spiraled into shutdown from COVID-19.
Our life, as my family and I knew it, was forever changed the week of March 15, 2020. Simultaneously, two tragic events happened — my husband lost his dearest friend to COVID-19 on March 17, and our then 4-year-old son, Ellis, was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL) on March 21.
Our previously energetic, sassy, loving boy was perpetually tired, had an unbreakable fever, and was sleeping most of each day. The worldwide emergence of COVID-19 made getting a simple appointment with his doctor extremely difficult, but once there, it took only one look, and we were told to go straight to the emergency room. After a single blood test, we were transported 90 miles to Stanford Children’s Hospital. Upon arrival, we were informed that only Ellis and I would be going into an isolation unit and were not to have contact with anyone outside our medical team until Ellis’ COVID test was back.
Finally, on March 21, the hospital agreed that my husband and I could be in the same room as they delivered Ellis’ diagnosis, and on March 23, his port was placed. Our journey through CANCER during the global pandemic had begun.
It was beyond frighting to navigate this unimaginable cancer diagnosis of our youngest child, during his nearly three years of treatment, there were:
- Numerous unexpected hospital stays;
- Terrifying emergency room visits;
- The anxiety and near torture when administering his daily at-home oral chemo, which was sometimes as much as six syringes, twice a day, only one of which was remotely palatable;
- Hours of chemo administered by nurses in full protective gear, indicative of the poison they were administering to Ellis;
- Watching Ellis vomit on and off for hours, then cry because he felt bad for making a mess.
- Numerous blood transfusions;
- Having to hear Ellis ask to go home and not being able to tell him when we would;
- Numerous surgical procedures to administer intrathecal chemo and bone aspirations;
- Tubes placed down his nose;
- Debilitating joint and back pain;
- Developing neuropathy that still affects him today;
- Living in the hospital for 21 days, then because we live 90 miles away, having to stay for two more months in a nearby rental;
- Being immediately separated from our two other kids and not being able to see them for over a month;
- Enormous hospital bills, navigating insurance, juggling doctors’ appointments and prescriptions;
- Commuting 180 miles once, sometimes twice a week;
- Trying to traverse school, COVID, colds, and supporting our two other children.
Ellis will forever carry the scars of his cancer journey:
- Forever having frequent checkups;
- Forever disliking the term “good job” as it reminds him of what the nurses and doctors would say;
- Forever wondering if it will come back;
- Not knowing if he will live a long and healthy life;
- Yet unknown complications he may suffer from the chemo.
Now 9, Ellis’ last day of treatment was in April 2023, but we’re still discovering and dealing with numerous side effects. He is a true warrior and met this life challenge with so much courage. Through it all, he’s maintained a great sense of humor and genuine kindness.
He now enjoys being back in school, spending time with his brother and sister, playing video games, and has just started to finally play sports. He likes to say he and his mom (breast cancer survivor) are cancer twins and that “cancer messed with the wrong kid!”
Julie
Family Member
