Shane’s Future Days is a 501(c)(3) non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other rare childhood cancers. EIN: 47-2556395 .
There were a few bumps in the road, but we are going home today. Shane is doing well with the treatment and hasn’t had any side effects. His port needle did become dislodged, which led him to cry most of Wednesday night. We didn’t discover the problemuntil Thursday morning when his IV fluids started leaking all over him. He was de-accessed, allowing the swelling to go down and then re-accessed. Poor guy knows what the numbing cream and tape means now. He’s no dummy. His numbers didn’t look great yesterday, so he got his blood redrawn. Before we leave, he needs a transfusion. Better now than later. In the meantime, he will be quarantined for the weekend until his numbers go up and he can fight infections again. I’m half joking, half not. I’d rather be safe than sorry.
Went to see Paul, Michele, and Shane last night. The little man is looking good and he is so happy. While he sits there saying DaDa (MaMa is not in the vocabulary yet), he smiles and plays, and I think was flirting with a few nurses. Paul and Michele are so strong and everyone is so thankful for the support given by friends, family, and complete strangers! In addition to what has been done so far, a fundraiser is being held for Shane at North Bowl Lanes in Philadelphia (909 North 2nd Street, 215 238 BOWL) on June 8th from 4-8 p.m. Tickets are $50 each and there will be free food and bowling. A silent auction and raffle will be held with various items including tickets, autographed items, dining experiences, and vacations. We look forward to anyone who can attend.
Happy belated Mother’s Day to all the moms, grandmoms, aunts, godmothers and moms-to-be! I hope you all enjoyed your day, whether it was spent getting some time off or surrounded by your family. Being a mom is truly a gift. It’s a difficult job, but it’s incredibly rewarding. These last few months, “motherhood” for me has been difficult. I rarely speak about how I’ve been feeling. I often don’t get the chance to. I’ve spent a lot of time consoling others on how they feel about Shane’s diagnosis. I understand people are sad and helpless, but how do you think I feel everyday? For the most part, I feel strong. I’ve surprised myself at how well I’ve managed. I have wonderful role models around me to help me learn and grow. The things I love best about being a mom are seeing their smiles and laughter. The looks in their eyes that tell you they love you without having to say so. I am blessed to be the mom to three amazing children. I hope to continue to be strong for them as we move along on this journey.Speaking of happiness, this past week we took Chase and Ella to Disney World. We’ve had a trip planned for all our children since early January. After Shane’s diagnosis the trip was off the table. When we had our “team cancer” meeting, my father-in-law asked if they could care for Shane and bring him in for treatments. In terms of our new normal, everyone is suffering. It took Paul and I weeks to decide if this was the right decision for us. In the end, we decided to go and let Chase and Ella be normal one last time. Leaving Shane tore my heart. I knew he was in good hands, but it was still difficult letting go. We all had a great week. Chase got trained as a Jedi and Ella met Elsa and Belle. Their dreams came true. On Monday, I was waiting in line at Magic Kingdom and my phone rang-CHOP oncology. Oh crap. My heart started pounding and I held my breath as I listened to the message. Ok, they scheduled repeat MRI, PET, CT and CAT scans for mid June. OK, that’s not bad news. We knew the tumor was getting smaller, so it was only a matter of time before they wanted to re-scan. Wednesday arrived and we were a little nervous, as Wednesdays are our chemo days. We went to Animal Kingdom and wore our Shane shirts. The picture above is taken in front of the “Tree of Life.” Symbolic, right? The best was yet to come. Later in the afternoon, we heard from our parents about Shane’s visit. The doctors reported that the mass is smaller. His numbers continue to be good and he looks and acts healthy. WOW. Disney truly was the happiest place on Earth. For us, at that moment. The only thing missing was Shane. We returned to celebrate Mother’s Day with our family and our peanut, Shane. He turned 10 months on Sunday. Yesterday we started back at CHOP again for another five day treatment regime. It was a long day. It’s hard not to be frustrated when things don’t go smoothly. By the end of the day I was almost in tears, exhausted and annoyed. However, things happen, in terms of emergencies and you have to be understanding. The labs were backed up. Nothing can happen, until the labs numbers are in. We had a bed because we were getting admitted, but they can’t hold the bed if someone else needs it before us. So, we waited and waited. Finally the labs were back after 3 hours, but a bed wasn’t ready. An hour later, we started his chemo in the day hospital. We arrived at 11:15 and were in a room by 6:30ish- long day.With all that said, Shane is doing well and that’s what is important. The side effects have been controlled well this time. Little man already finished his chemo for today. He’s a little rockstar. All while smiling and laughing. God, I love the kid!
Today was the 35th annual Broad Street Run in Philadelphia. It’s the world largest 10 mile race and Shane was there in spirit by people supporting him.After I had told my close friends about Shane’s diagnosis, a dear friend from my Dickinson days, Emily Cooney, asked if she could run for Shane. She has done the race in previous years in memory of her friend Nancy. She was unable to race today due to an injury, but her husband, George Schaubhut ran instead. We thank you both for your support and thoughtfulness!In addition, I received an email last night from a fellow Cheltenham alum, Stephanie Jacobson, saying she too was running the race and wearing Shane’s picture on her shirt. Not only was she running for him, but asking her supporters to donate to his page for the month of May. Thank you for honoring our son.