Riley’s Story

leukemia texas worked closely with riley’s family to lighten the burden of this disease.

in his mother’s words, here is riley’s story.

Riley began to get sick the week of Thanksgiving. He had some fluid draining from his ears. We were concerned because we had been waiting for tubes to fall out so we watched it. We don't usually run to the doctor for every little thing, but didn't want to go through the holiday weekend without knowing for sure, so we went to see our family doctor. He said it looked like a slight outer ear infection. He didn't see tubes and the holes where the tubes were had healed nicely. We were excited. He gave us antibiotics and told us to watch it. We made him wear cotton in his ears because it was kind of gross seeing the drainage. He felt totally fine that weekend, but we noticed he had some tiny red dots on him. I assumed it was just a slight allergy to the meds.

Monday we loaded up to go to the playground. When we got there, I looked at his ear — there was white puss coming out. We panicked, called the doctor, and they said to come in. The infection looked a little worse, so the doctor put antibiotics deep into Riley’s ear. This whole time Riley had no fever — we honestly didn't think anything about the red dots because they had faded (it seemed) and he had been acting totally normal! We went to a family member's wedding and he acted a bit strange: he would lay on the floor…just lay there. One family member said his eyes looked different. We agreed, and just thought he was starting to look more like my side of the family, so no big deal. But thinking back, his eyes looked sad and he clearly didn't feel good. I kick myself because I had NO CLUE this MONSTER was growing inside my baby boy. We came home from the weekend with my family and went to a live walk through nativity, during which Riley was just fine! He LOVED it! On Wednesday, we went to our homeschool co-op class like every other week. He played fine with his friends — he wasn’t displaying any symptoms.

That night, he woke up in the middle of the night throwing up and he would beg "mama hold me on the couch." I admit I was not a happy camper about being dragged out of bed on barely no sleep. I was holding him and noticed the lymph nodes behind his ears seemed swollen. I panicked. My husband Adam, who always brings me back down to reality, told me to stop worrying. We noticed when he would sleep he made weird sounds, like he was in a lot of pain. We thought it was just a stomach bug, but by Thursday his temp was getting to 103. I put him in the tub and noticed he had many new bruises — at least 15 bruises and the darn red dots again. Dad chalked it up to him just being a boy. I was paranoid and went to the Internet. “Possibly meningitis?” is what I thought. I was not aware that Adam had the lingering thought about leukemia, but never mentioned to me. I was determined to get him into see our pediatrician, Dr. Nicholas, on Friday morning. We got up Friday (after almost no sleep) and noticed his belly looked bloated. He was starting to cry and was refusing to walk. When we went to the doctor at 9:30, I told her all the symptoms. She said he looked really pale to her, which I didn't really notice. She sent us over to the hospital for a stomach x-ray (we assumed it would show a ball of poop) and some labs to rule out anything. She didn't give me any hints of what it could be.

We were at the hospital at lunchtime. I had only the single stroller and both boys: Riley (3) who was refusing to walk, and Masen (19 months) who liked to be chased. It was a long, tiring, stressful morning. We got home at 12:30. I laid Riley on the couch. The doctor said they should know something today. She called not long after I got home, and said "his white blood count is outrageous and his red blood count is low.” I could only think: “is she talking about cancer?” She then says, "I hate to say this, but it is CANCER."

My legs buckled. I couldn't contain the tears. My big kids, Reese (12) and Grace (9), saw my reaction and started asking me what’s wrong. The doctor asked us to go to the ER right away, where she’d have a different doctor waiting. Adam was asleep. I woke him, and he was of course panicked. We stopped what we were doing, gathered what we could, and all laid hands on our baby boy and prayed (I am so grateful that Adam did this, as for the next few days I literally could not pray, I would try and I couldn't get any words out). The 20 minute drive to the ER were the longest 20 minutes of my life. I called my mother. She stopped what she was doing and started to head our way — she was 5 hours away! We checked into the ER and were put into a trauma room where we were immediately surrounded by people. Adam had gone silent at this point. He didn’t speak — just sat and held Masen as I held Riley while the staff changed his clothes, started IVs, and asked me what seemed like the same questions over and over again. A social worker — a godsend! — came and got the big kids so they could escape and go play for a minute.

It still had not clicked with me that our baby boy has leukemia. The oncologist comes in and I ask:

“Does he have cancer, are we sure?”

All the questions are running through my head.

The doctor:

“His counts are so crazy — 145,0000 white blood cell count. We are not aware of how severe this really is, but it is confirmed, your baby boy has a cancer called LEUKEMIA.”