My daughter was diagnosed with leukemia and our lives have changed forever

This was the second ear infection that she had gotten in the last 3 months; not to mention the only ear infections she ever had in her 4 years of life. The first one turned into a ruptured ear drum even after taking oral antibiotics and ear drops. She had just finished ear drops for this second infection when she mentioned some leaking fluid from her ear. We were worried that this infection had turned into another ruptured ear drum and scheduled a follow up appointment. In addition to the ear issue, we had noticed that her complexion was more pale than usual and she had developed some spots on her legs and torso. She seemed her normal self other than that. What was going on?

As suspected, it was another ruptured ear drum. Was this normal to have them this often?

During that appointment, the doctor seemed mainly concerned about the spots and pale complexion. She ordered some blood work and told us to get it done as soon as possible. The next morning, I took my daughter to get blood work done and we went about our day. The doctor called me to ask if we had gotten her blood draw done. I let her know we had went that morning. She said the results would likely come in later that day and the on-call doctor would get back to us if they came in after hours.

That night we were settling into our night time routine – reading our daughter some books and trying to put our 2 month old son to sleep. It was about 8pm when we received a call from the on-call doctor telling us that we needed to go to the emergency room immediately for some additional blood work. She informed us that her platelets were 17,000 and her ANC was 0. Her what and what? She explained that she was at extreme risk for bleeding and it couldn’t wait until morning. We got out of bed, packed up the kids and off to the hospital.

If you have kids, you know that blood draws are no walk in the park. They’re hell. After a few pokes and prods and waiting about 5-6 hours, they came back and told us that the on-call hematologist reviewed the blood work and it was likely she had lymphoma or leukemia.

WAIT A MINUTE. BACK UP…… WHAT? I asked if they were sure that it was going to be one of those things. They told me yes. They just needed to run some additional tests to determine exactly what she had. This short little ER visit was going to be an overnight stay.

I can’t even remember what I did at that point. I’m pretty sure that after she was transferred to an inpatient room, that I took the baby and went home to attempt to sleep while my husband stayed with my daughter.

The next day was June 1, 2023. We met with the pediatric oncologist who confirmed that she had acute b-cell lymphoblastic leukemia and she would be undergoing surgery the next day to have a port placed and that she would be starting chemo.

That’s right. Leukemia. Blood cancer. Cancer. The C word.

More on that in my next post.