About
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
What is Alveolar Rhabdomyosarcoma?
Click below to learn more about this rare childhood cancer and what we can do to fight it.
What does your donation goes towards?
Rhabdomyosarcoma is currently non-curable pediatric cancer and your donation goes directly to the research to help fight it.
I was thinking about what to write about today and Ella reminded me of what it should be about.
Children grieve too. I’ve mentioned this.
The problem is people don’t always listen. The truth is my kids have been through more than I ever wanted them to. What I’m learning about both of them is that their grief is changing as they grow.
What we do know about their grief is like us, they want to talk about Shane and they want people to talk to them about Shane. Not all the time, but when they mention his name they don’t want to see people flinch or get uncomfortable. It’s a hard balance to have to explain to a 9 and 5 year old.
We are all aware that back in the day, people didn’t talk about losing someone. Some people never mentioned it again. Again, we have seen statistics of the effects of not talking about feelings associated with a lost one and how impactful it could be to one’s future.
This is why the PACT team and our child life specialist is so important. Kelly has allowed our children to express their feelings, not just through words, but stories, picture boards and experiments.
She has introduced the kids to two different books, “The Invisible String” and “My Yellow Balloon.” I would highly recommend them to someone who is struggling to speak to their child about losing someone.
Tonight, Ella asked me to read “My Yellow Balloon.” I wasn’t surprised. I could tell she was needing to hear it. She started a new school and has some hesitations. She finds comfort in having Shane and thoughts of him around her.
I read the book. On the last pages are pictures of balloons with names of people lost. She asked if we could go downstairs and draw Shane’s balloon. So, we did.
Paul and I took the kids to the Phillies game tonight. This was the first time I was back to the Hall of Fame Club since Shane was there.
He went twice. First time, he couldn’t walk yet, but the second he was strutting around the HOF club like he owned it!
He loved watching and clapping with the crowd. Good memories tonight.
Our magic number for CHOP was 101.4.
Once Shane was diagnosed and we had our “team cancer meeting,” they tell you you need to attend a cancer 101 course through the hospital. Whoever was going to be involved in Shane’s care was urged to attend.
The most important topic of that meeting was the fever. They even hand you magnets with 101.4 on it and all the oncology numbers you need to call if his fever were to reach that level.
When children have ports the risk of infection is higher. Some of these infections could be blood infections, which could be life threatening.
Looking at a lot of pictures of Shane, he is frequently seen around our home carrying his beloved thermometer. Lucky for us, he went 5 months without ever having a fever. In the cancer world, that’s damn good. His first fever was in September. If you look at him, he never looked sick.
