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.
Philadelphia Eagles are headed to the Super Bowl!
At CHOP for inpatient chemotherapy
Dad and Shane watching a game
Today Shane would have been 4.5. We never celebrate half-birthdays, but since he left us, it’s a mentally noted moment for us.
This time last year, I wasn’t feeling so great and what seemed like a repeat in time, I took a random test, just like I did in November 2012 and discovered I was pregnant. And like before, I was at a loss of words. I looked at the date and it all came together.
January 11, 2017….Shane’s half birthday.
I haven’t really spoken about my pregnancy with Will. In fact, I tried to hide it. Paul and I discussed it and I wanted to keep it to ourselves.
Something for us to hold onto, especially since we were fearful of the future.
We told very few people and not even a lot of people close to us.
When we found out the sex, it was still too early for me to want to reveal.
It was difficult to imagine welcoming another son after losing one. What if something happened to him? These thoughts plagued me my entire pregnancy and still do…we all have these thoughts, but from what I hear, it’s normal given our situation.
I agreed to allowing it to be announced publicly to our friends on Father’s Day. At that point, I was already 6 months pregnant. Of course, those of you in our daily lives knew. I mean, you could see the physical changes, but what I wanted to hide most was the emotional changes going on.
I apologize to any of you who were offended by my silence. It wasn’t intentional and it wasn’t because I wasn’t happy. I was scared. I still am.
Privately and more importantly, I was feeling incredibly blessed to have been given another chance.
A chance to experience:
-sleeplessness nights (yep! we are there after a blissful 3 months of 5 hour stretches)
-the coos, laughs and amazing conversations as your baby learns about his new world
-to give Chase and Ella a piece of healing and to experience being older siblings again
-for Paul to reenact his ability to be the supportive spouse and dad through all those beginning stages…He truly is an amazing father
-to see the look in your baby’s eyes when you come into a room
Honestly, the list could go on.
There are many emotions for a bereaved family welcoming new life.
We are forever grateful for our little miracle, Will. He amazes us and my children amaze me with their constant excitement and helpfulness. While Will may have looked like Chase, I can see a lot of Shane in him right now.
There are more things I could go into with welcoming a new life as a bereaved childhood cancer family, but I will save it for another day….
Will Shane
New Year’s Eve….
This will be entering our third year without Shane. My biggest challenge is not living in fear. I fear more now than I ever did. I mean, we live for the moments, but I approach a lot of my life now with deep caution. The death of your child can certainly rip away any innocence life once held.
I took the week off. Christmas was wonderful and then I was over it. The planning, sleepless nights, added responsibilities and everything just wore me out. I had plans, but the reality is, we live very busy lives…all of us do. We needed to have this downtime to just be in our home, letting our children enjoy their gifts and just being together without any plans.
The anticipation of the New Year is exciting.
It’s definitely challenging when a part of you is missing. I find it difficult to not be positive and hopeful for the future. It’s one of the most important things Shane taught me.
So, Cheers to 2018!
May it be an inspiring year for research and advocacy for our children.
I believe…
Today I delivered the last of our holiday gifts. I then bawled for a half hour before I could pull myself out of it. So many memories of that time with Shane and the story of the family hit home.
There are just so many things that occur in a family’s life when your child is diagnosed.
The weekly trips to the hospital, the difficulties in port access, the tolerance of the chemo and/or radiation, the starvation for scans, the unplanned transfusions and then hours and hours you spend waiting for appointments, scans, results etc.
Then there is the balance of life at home with other siblings, immunocompromised systems…the list goes on. Then add the holidays to all of this.
A snapshot a what a childhood cancer family goes through.
This is what real stress and worry is about. It’s not the shopping, cooking and prepping.
For a brief moment, we hope we have let those families have a bit of relief and/or let them know they are being thought of.
Thank you to those of you who contributed to our holiday gift drive. Thank you for those who have supported our foundation this past year.
We have a bright year ahead of us.
The research from Shane’s tumors has exciting developments thanks to the incredible efforts of Children’s Cancer Therapy Development Institute. We are pinning down a date for our fourth Celebration of Life and I’m working on a side project that I hope can assist more families and research.
Merry Christmas and Happy Holidays!
