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.
Strength of an Egg
“Parents of children with cancer, or any serious condition, are often referred to or viewed as having strength “like a rock”. Although flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes!
If you’ll think about it, you’ll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.
Most children, at some point, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.
It takes a lot more than pure hardness to hold the hand of hope. Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. “Balancing an egg” while running a household, going for chemotherapy appointments and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.
Unlike Humpty Dumpty though, parents of children with cancer will pick themselves up and put themselves back together again.”
by Juliet Freitag
Celebration of Life planning is in full swing!
Thank you to those who reached out and offered to make or donate baskets for our raffle and/or silent auction!
We have really amazing stuff!
Thank you to our newest donors!
Sunset World (Cancun stay), H2Oooohh Indoor Water Park (2 waterpark passes), Napa Valley Wine Train (2 dinner experiences), ZOOBOOKS (12 month subscription), Picaboo five $50 gift cards), Philadelphia Flyers(autographed hockey puck), The Rose Group (generous gift certificate), Allegro Winery (wine tasting experience for a group) Travel Set Go(membership worth $199) and The Uncorked Artist – BYOB Paint and Sip(generous gift certificate and painting)!
On April 6, we had to say good-bye to our first “baby.”
Our pug, Monty Burns, is now running in the clouds with Baby Shane.
We are heartbroken, but know the two of them are together 
Sunday was when the grief starting creeping in.
THIS week is THE week and TODAY marks the two year anniversary of Shane’s passing.
On one hand, time has moved forward slowly and on the other, in the blink of an eye. But, everyday I see his beautiful smile and bright blue eyes and can hear his tiny voice, whether it’s his signature giggle or grunt. I remember so many things about him, yet fear I’m losing some of the details as we move along.
My grief has changed. They said it would. It’s changed for all of us. It will every year, apparently.
For my children, it’s gotten bolder. Their questions and thoughts they formulate and ask have been mature, brazen and sometimes cutting and to the point. We answer them in the best way we can and are so very proud of them for expressing their feelings. We often think of all they have been through and how they manage to be such thoughtful, well adjusted kids. We are very thankful. For us, our grief has softened a bit.The edginess has rounded and things and situations that affected us prior, don’t have the same feelings as before.
I’m often asked how we plan to spend the day marking this anniversary. One thing, time is going to continue. It’s not going to change my feelings or thoughts about Shane or how we chose to mark this day. I realize over time, things may come up, such as events, etc and when that happens we will adjust accordingly. For now, we choose to have the kids continue in their normal routine while Paul and I spend the day together. We spend time outside, we all tell stories of Shane and how much we miss him, eat his favorite foods or head to his favorite places to eat (not Chipotle!) and of course we send him a lantern.
Last year I was just sad, but this year my grief is raw. I keep replaying the days and moments leading up to his passing. People often express how death is peaceful. That moment is, but the approach is not. Often there is such a high point before everything declines.
It definitely hasn’t helped that our first fur “baby” Monty has been sick. Some of his symptoms and behaviors bring me back to those moments.
Today for us, Paul and I, we choose to let ourselves be sad. Every other day, we wake up and face the day with a smile. We choose to live and surround our children in happiness. We move forward with Shane by our side. We advocate for him and children like him to help in our grief. It’s healing to us.
We’ve done a lot since Shane passed to mark his legacy. We’ve raised thousands of dollars and donated so much more. It’s pretty awesome. Shane’s Future Days has donated $35,000 alone to research since Shane’s passing. Thousands more have gone to CHOP and to assist families battling rare cancers.
We couldn’t do this without all of you and our family and friends. From attending our events, donating, and volunteering to approaching us on the street just to tell us you know Shane’s story, thank you all so very much. Thank you for keeping Shane’s memory alive. Thank you for keeping us going.
