30 DAYS/30 STORIES® 2023
This is our third year writing our story of how our child, and our family has been affected by pediatric cancer. Our son, Andrew aka Squishy, was diagnosed with AML (Acute Myeloid Leukemia) a little over 2 years ago. As most of you reading this know, there are far reaching effects of this horrible disease. We feel them within our family and especially how it has affected our other kids’ lives’ and what it has robbed us all of. Even in all the darkness, there also has been positive impacts in our lives as well. Through all our journey, PCFLV has been there for our family. I wanted to tell you about some of the good and bad things we have found and learned of and how it has changed us.
Andrew was diagnosed with AML at 15 months old. We spent the next 6 months living in the hospital fighting for his life while trying to maintain normalcy within our family. During diagnosis, Andrew’s subtype was considered high risk mixed lineage leukemia and our original treatment plan was leading us to bone marrow transplant. Thankfully, through being involved in a COG research study for AML, Andrew had a deeper dive into his genetic mutation, and as a result was re-ranked for chemotherapy only. We are so very blessed that our story has a lot more good than bad to it. There are so many others that cancer has affected in a far worse way than we have, and we even carry a twinge of guilt at times that Andrew is getting closer to 5 year survivorship every year.
We try not to think of the time and attention that was robbed from our other children when we were in the hospital, the fear and uncertainty they felt, the depression that they still sometimes feel and how it has affected their lives. These thoughts happen almost daily and go right alongside the uncertainty we feel about so many things. What about when Andrew gets a cold? Since he is in daycare, this happens far too often. Feels like every month he comes home with a cough, runny nose, or tummy ache. Every month we feel that creeping feeling of dread in the back of our minds. What if this is the time? What if he does not get better and IT has returned…. We are so very lucky that he has beaten every cold (with lots of amoxicillin to help) and he brings us so much joy every day with his spirit, attitude, and pluck.
This is our life now. I am so grateful to say there is now so much good to go with the bad, but even at the worst times of treatment when we would not have admitted any good came from this, we were always very grateful for the support from the community we are now part of. It is an incredibly strong community. We are grateful for the incredible people we met along the way, with the team at PCFLV being some of the strongest and best we met. People with huge hearts and boundless generosity. People who helped keep life as normal as possible for our family while Andrew was in treatment and gave us the opportunity to attend fun events to forget reality for an evening. People that bring our community together and help show us we are not alone. Our story keeps evolving and getting better every day. But not all stories take this path. Unfortunately, there are too many stories that have the battle on earth end with a trip to heaven, and as a community, our hearts break with them. PCFLV’s outreach touches all aspects of the journey. Help us help PCFLV raise funding to continue to help our community.
I would like to close by sharing a little bit of hope…
I will never forget the day during the thick of treatment that I had to run home from the hospital to help movers get into our house to bring a very heavy piece of furniture into the basement. In our focus on Andrew, I had forgotten this was scheduled months before and going home in a rush with a full mind and the “scent” of the hospital on me. One of the movers, a very healthy and vibrant teenager saw one of the squishy signs in our yard and proudly told me “I had AML when I was a kid, and I survived”. There is always much to be hopeful and grateful for.
Written by Andrew’s dad, David
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip