For March’s spotlight, we want to introduce you to Claire and her family. There is a consistent theme with anyone who has gone through this. No one ever expects their child to have cancer. We all want what is best for our children, but this happens. It blindsides us all, and then in a blink, everything changes. What was once an expectation now becomes a hope.

Our daughter Claire was a bright, active, growing 3 year old girl when our world changed. And in part, that is what has made this whole diagnosis and treatment so difficult. She was not a “sick kid”. A few colds, ear infections throughout the years were considered normal since she was in a childcare setting since she was an infant. On March 1, 2022, Claire tripped and fell over our cat which started a limp with some concerns seen on xray and abnormal blood work. That 12 hour overnight ER visit (with her first exposure to an IV, labwork, ultrasound, xrays) was so scary. We just thought she might have a fracture which was already a traumatizing thought! All the follow up appointments with orthopedics, hematology, gastroenterology, rheumatology, physical therapy that ensued were taken one appointment at a time. By the time June rolled around, Claire was not experiencing any pain or limping and all seemed normal. Her abnormal blood counts had all gotten better without any treatment. I felt like we could breathe a sigh of relief.

In July, she was exposed to Covid from her teacher and tested positive. Besides a cough and fever, she was recovering fine. However, even 7-10 days after, she still continued to have daily low-grade fevers which was only mildly alarming. A chest xray revealed a possible pneumonia so she started antibiotics, but still was mildly fevering even 48-72 hours after antibiotics. Her labs showed the low white blood cell abnormalities that were seen back in March, so we decided to move forward with a bone marrow biopsy. On Friday, Claire made it through the biopsy well; but how were we to know it would only be the first of so many anesthesia procedures? On Friday afternoon, our hematologist called us to say that at least, it was NOT leukemia, but we would wait for other autoimmune tests to return, and to have a good weekend. We were only mildly relieved as I don’t think myself or my husband were really expecting it to be leukemia since Claire was so healthy and so active. On Monday afternoon, August 1, 2022, I had just picked up Claire from school and returned home to start dinner when I received a phone call. It was a different hematologist/oncologist from Cincinnati Children’s Hospital who told me that in 18 years of working, he had never seen the initial fluid test show no blast cells, but they were found in the core marrow sample that was taken. She had B-cell Acute Lymphoblastic Leukemia (ALL). It was a horrible feeling as my husband and I listened to him tell us to pack a bag and plan to be admitted to the hospital for a prolonged stay. We learned the next day that it would be at least a 30 day admission to start her induction chemo. Needless to say, I was in denial for several weeks (and sometimes randomly even now 8 months into 2.5 years of chemo). Never would I have thought our daughter would have cancer. Never would I have wanted to put toxic chemo in her body and developing brain to watch her deteriorate to fight this invisible cancer.

Since Claire was born, I somehow took after my mother in trying to do everything possible to help her ultimately have an easier life. I am a dermatology nurse practitioner who read all the research articles on foods, vegan lifestyle, parenting, Montessori schooling, etc. I am the person that can go down the rabbit hole of researching the best toddler drinking cup for days before I make a decision and purchase (I know, I know…it’s just who I am!) If I could help her have a few more brain cells or less behavioral issues by eliminating any screen time, I did it. I wanted her to be happy and also have the ability to be a successful and kind human. I still want those things for her, but I am learning to readjust my expectations. And it’s still a daily, weekly, monthly battle where I can feel like things are going fine, but then I can read something on a Facebook group post and just get hit with sadness and ncertainty. We are learning to take things one day at a time, and we’re doing our best to make things as easy as possible for her and avoid as many side effects as possible. I was always a planner so having such an unpredictable schedule has been such a challenge, and even now knowing that if she spikes a fever, all bets are off. Her first fever during treatment was low-grade and gone within 12 hours, however it resulted in a 2 week hospital stay over Thanksgiving while waiting for her neutrophil counts to recover. How do you plan for that?!

Our lives are forever changed. I label things pre-diagnosis and post-diagnosis now. The little things I used to worry about pre-diagnosis (and I was highly stressed and felt overwhelmed THEN!) are just not such a big deal. I enjoy my time with Claire more and marvel so much more at how brave and sweet she is. I try to relax a bit more, not stressing as I used to if for example, she was late for bedtime, now that I know she may not be here one day. As tearful as that makes me, that’s what a cancer diagnosis will do. My Christian faith had not been as strong as it was pre-pregnancy, but of course, I pray so much more now. While I know there are so many other cancer families in worse situations than us, with “worse” cancers than Claire’s ALL, it has so rocked my world. I still feel sad that this is something that will never go away, even if she makes it through treatment and makes it to 5 years event-free survival. Relapse will always be in the back of my mind and concern for late treatment effects of chemo. Will she need a hip replacement at 20 years old? Will she have early cardiac disease from chemo damage? Will she need multiple root canals due to tooth damage? Will all the spinal chemo affect her cognitive thinking? These are the thoughts that haunt me, but during treatment, I know I cannot dwell on them. As of March 2023, Claire is learning how to ride her pink pedal bike, taking piano lessons, building Legos, learning about animals, vehicles and space, and doing all the crafts possible! And that’s exactly what I want for her…

We hope that Claire’s treatments continue to go well. We also wish her parents continued strength. It’s all very difficult, and we want you to know that you aren’t alone in how you feel. The adaptations and willingness to change show how much we love our kids and that we would do anything to give them what they need.