Between February 13th, 2018 and March 4th, 2018 is the very short time I refer to as the stormy weeks. I really felt like we were riding out some sort of crazy storm only this storm wasn’t going to stop any time soon and the black cloud that hung over us was so unbelievably heavy.
My mom and I went out the night of the 13th to get stuff for the kid’s valentine’s day. I bought my kids any and everything I wanted to buy. I knew this could be the last holiday with my boy and a rocky one for my girl and I wanted it to be one to remember. We bought LJ a Star Wars hot wheels track, tons of candy, a Darth Vader balloon, and of course a light saber!
The next morning was Valentines and we watched through tears as our kids enjoyed their gifts. The videos of my shaky son with his bandaids on from multiple IV attempts are hard to watch and were even harder in person. You can hear my sweet Em ask me if “those were happy tears” bless her heart. She had never seen her parents cry so much in her life.
I had planned a Valentine exchange for a home school group on base so we all got ready and headed to the Arctic Oasis(an indoor playground on base) to watch our kiddos exchange valentines. A few friends that we were meeting there already knew, but many didn’t and I started to experience the pain in telling people LJ’s diagnosis. Explaining DIPG to people isn’t any easier now, I’m just able to do it without crying and also able to warn people that they might cry. We did our best to enjoy that day, watching our kids play with their friends and being comforted by friends ourselves. We had lived in Alaska for 6 shorts months and there we were with a village surrounding us.
Our team rallied in the next weeks and went into action, some flew to Alaska, some did research, some called every top hospital in the nation, some meal planned, and everyone else pursued us making sure we were encouraged and okay. Our follow up visit was on the 15th of that dreadful week and we walked into the oncology office to be asked “so what did you all decide?” The Dr.at Providence had no guidance for us other than where did you all decide to move. This method of treatment wasn’t acceptable on the 13th and it wasn’t going to be on the 15th. We had a team of friends who had already found trials and other options for us, we were not going to accept this “move” as a course of treatment.
We walked around in a bit of a haze because we did not know what our plan was, we only knew that moving to a better location to lose our son at wasn’t a good enough option for us. We obtained LJ’s MRI images from Providence Hospital and began sending them overnight all over the country to any hospital that would look at them. LJ’s images went before many tumor boards and was looked at by multiple Neuro-Oncologists in the nation. None of which would treat a two-year-old with DIPG with much more than radiation and a steroid regimen.
During these weeks we cried more than I could ever imagine. I couldn’t even look at LJ without crying. And the worry of the impact of all this on Emmaleigh really started to set in and show. Her behavior was out of control and I began researching what it meant to be a “Super Sibling.” I remember thinking, if we were going to lose LJ we couldn’t lose Emmaleigh too.
“At Alex’s Lemonade Stand Foundation, we know that childhood cancer affects the whole family, not only the child who receives the diagnosis.
Brothers and sisters of cancer patients often face fear, anxiety, changes in daily routines, worry, grief and even jealousy as their family is thrown into the emotional turmoil of managing a child’s cancer treatment.”
-Alex’s Lemondade Stand Foundation
We had a Make-A-Wish trip rushed and were gearing up for a once in a lifetime, but heart wrenching trip to our favorite place, Disney World. Before Disney I received a call from Dr. Fouladi at Cincinnati Children’s Hospital, everything about the call was comforting and hopeful. She was a true light in some of my darkest days. She encouraged us to go do Disney, enjoy our trip and we would discuss treatment afterwards! That’s exactly what we did.