By Samantha LaBarge
Mommy to Riley
Infant Acute Lymphocytic Leukemia
Everything started when Riley was about 4 or 5 months old – she had a bump on her head and what seemed like a cold with a fever that wouldn’t break with Tylenol. We took her to the hospital because she was becoming lethargic. When they took a sample of her blood, I remember you could see right through it like water, and they told us her “white cells” were extremely high. We were transported to Cardinal Glennon for a blood transfusion and further testing.
In the back of my head, I knew as soon as they told me her white cell count was high it was cancer, but no one would for sure tell us.
We arrived at Cardinal Glennon and the next morning all the doctors were rounding, talking about our sweet girl. The nurse suggested I sit in on the round as they talk about her. At this point, we still didn’t know for sure what was wrong but as they were talking one doctor looked at me and she must have seen the worry in my face. She told everyone to be quite and asked me if I know what was wrong with Riley. I said no, nobody has told us anything yet. She looked me straight in the eyes and said she has leukemia.
They all started talking about her again as tears ran down my face. I remember thinking of one of my favorite movies “Walk to Remember.” As they finished up she asked if I had any questions and I told her I just have one:
Can she be cured?
I was so scared of the answer to this question, but I had to know. The same doctor looked at me and told me “Yes!”
Unfortunately, traditional chemo treatments weren’t working. We were told things were starting to not look good and we needed to start thinking about the “what ifs.” But a new treatment was available, and Riley was approved. Right before the treatment started, we contacted On Angels’ Wings – they sent a photographer to our home. Since Riley was in the hospital most of her life so far, I wanted one family photo of all of us together. OAW made that happen!
Then we started the new treatment called Car-T. And one week after her first birthday we received the news that the Car-T put Riley in remission!
Riley’s leukemia journey has impacted our lives in every aspect. I can no longer work full-time because of all the doctors’ appointments she still has to go to. It has affected the relationship between Riley and her older sister, since only parents could go to the hospital that whole time Riley was there. Her big sister felt abandoned, and they never got to bond like other siblings. It hasn’t been an easy road but I’m glad where we are today.
Riley has been cancer FREE for 2 years! She’s living life like a normal 3-year-old! She loves to dance, play, and swim! It’s our hope that she gets to stay in remission, and that we never forget how precious time is.
