Shane’s Future Days is a 501(c)(3) volunteer non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395
After Shane’s diagnosis, the doctors were adamant about us trying to lead normal lives. While, it’s not easy to wake every morning and realize that this nightmare is your life, we are trying out best. So, today we spent the morning watching Chase’s first baseball game of the season and took Ella to her dance class. That’s us being normal, even if it’s just for a couple of hours. At least the kids will sleep well!
Paul and I weren’t the only ones affected by Shane’s diagnosis. Chase (6) and Ella (3) have had their lives changed forever and they don’t even know or understand it completely yet. When we found out I was pregnant, Chase knew it was a boy and affectionately called him “razor mouth” after a shark. Hence, the nursery is beach themed. Unfortunately, that nickname got replaced by “Shane the brain” via Ella and “Jar Jar” from our Star Wars obsessed Chase.
All I ever wanted was a family where my children loved and cheered each other on, no matter what life threw at them. So far, so good.
Every Wednesday is chemo day for us now. Today, Shane had his first outpatient treatment. We were there from 9:30 till noon, which is great time for CHOP. Poppy took us down and stayed with us. His counts were decent. His neutrophils are low, meaning he is at risk for infection, but his bone marrow is making new RBCs, so no transfusions were needed. The doctor looked at the area and agreed it was more “smushy.” The area is the tumor and after 2 days from his last treatment, I noticed a difference . Before it was as hard as a rock and now it’s softer and smaller. I smile because the doctor said we would “notice a difference, but not in 2 days, more like 2 weeks.” Go, Shane!
His total treatment , which was only one drug, took 15 minutes . He sat in his car seat and chompted on his giraffe because frankly teething continues, regardless. I’ve said this to a few people lately, but I feel more comfortable at the hospital. Maybe it’s because this is no longer new or so many people are going through the same thing. Today, there were too many babies on the floor. One little girl looked to be about one and she was walking around and her and Shane had their own baby talk conversation. Another baby was no more than 4 months old and then there was the couple who looked like us a few weeks ago. My heart broke for them.