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.
Today was the first day of the kid’s spring break. It was also a perfect day for their child life specialist from CHOP’s PACT team to visit.
Did you know that March is child life specialist month? These positions are fully funded by donations. They are incredibly important to the emotional well being of patients and their families.
When we returned from Boston from our second opinion, our social worker asked what we needed. I told her I needed help. Help in preparing Chase and Ella for the inevitable. We were so lucky to have been blessed with Kelly. She’s been with us since Nov 2014.
Kelly’s connection with the kids was immediate. She provides these gooey, messy activities for the kids and in turn they delight in the escape. These activities have fun built in, but they are also therapy for the kids. Some directly address feelings and emotions and the right and wrong ways of expression whether it’s through the use of a piñatas, polaroids or silly string. We even joked that the kids were playing with slime long before it was the “in” thing to do.
We are so grateful for her and the role she’s played in our journey. She is always there when the kids need her the most…from hosting a feelings activity in Chase’s classroom after Shane passed to stopping by to pick up toy donations.
Her position is invaluable to so many families. Bereavement is a tricky topic and it affects everyone differently. I can honestly say, that I feel confident in my children’s coping skills all thanks to her and the work she does. I appreciate the open talk relationship we have with our children about their feelings and emotions when it comes to their grief and their brother.
Thank you isn’t enough. This is why Shane’s Future Days gives back to the PACT team’s psych/social team.
Today, we proudly presented Kelly with a Macbook Pro and software to assist her in creating memories for other families. We are forever grateful for all the keepsakes, videos and photo collages she has created for us. They are treasures to us.
It’s important that other families get to create their own.
Thank you Kelly for all you do for so many. You are truly an incredible person and we are so lucky to have you on this journey!
*I think the colorful hands tell you just how successful today’s project was!
March 28, 2014
We received Shane’s official diagnosis. We waited all day to hear from the doctors. There was a weight on us. Our baby had cancer, but as we mentioned before, when we left the hospital two days before, the doctors said it was treatable. We were optimistic.
At 4pm, my phone rang. I hate that ring and have since changed it. It’s just one of those generic Apple ringtones, but whenever I’m out and about and hear it, it brings me back to that moment.
The call started on speakerphone and then Paul quickly turned it off. “Shane has alveolar rhabdomyosarcoma. We were afraid of this.” I could tell he was struggling with what was being said. The words he scribbled on the paper were big and difficult to pronounce. What the hell type of cancer was this? What was very clear is that he had a sarcoma and those were not good.
March 28, 2015
Shane made it one year since his cancer diagnosis. This should have been celebratory in so many different ways. For us, it was a silent and bittersweet celebration.
Shane was struggling. The difference in his body and himself was huge since the beginning of the month. He no longer walked, played and by now was barely eating. My last conversation (the 27th) with PACT team was me not fully comprehending why I couldn’t start feeding him via his g-tube. It was the nature of cancer to begin to starve the body, they said. Feeding through the g-tube wasn’t going to change what had already begun to happen. I just didn’t get it. I refused to believe this was the begining of the end. I was furious.
We spent the day together, the 5 of us. Making memories. Some of those memories are so painful for us to look back on. For Chase, they capture some of his favorite moments with his brother. Shane allowed him to hold him. Ella got to hold him. We spent the day and night holding him, crying and not knowing how much worse it was about to get.
March 28, 2016
The day reflects my mood. Grey and rainy. The anxiety is coming in waves. We made it through another holiday. The kids love Easter. It was a nice holiday, but it’s one that tugs at our hearts. Shane only celebrated one Easter with us and he had just been diagnosed.
There is a lot of anticipation leading up to Wednesday. What do we do? How do we act? How will we feel? I have no clue.
If I get up and get the kids to school for the day, then I will consider it a win.
It’s all trauma that we are re-living. The interesting thing is no matter what we try to do, our bodies and minds are doing their own thing.
March 28, 2018
This will be the first year since Shane’s passing that the kids will be off of school. Paul and I usually spent the day together, mostly outside breathing, remembering.
Three years seems like a lifetime and yet just a moment ago. I should be registering Shane for Kindergarten. He should be playing with his little brother as the big brother. It’s such a loss.
I’ve been touched this week by the sentiments of some and emails from others. It’s heartwarming to hear how Shane touched your lives. For such a little guy, he had a brilliant light and spirit. His eyes were deep and soulful and his giggle would always make you smile….even when the giggle took every bit of his strength..
So, on Friday I still don’t know what we will do. I do know we will all be together. The kids know it’s coming. I see it in their actions, drawings and words.
It’s a solemn day for us, thank you to those of you who have reached out and recognized that.
Well, it’s March and being snowed in has given me more than enough time to reflect.
Thank you all for your comments on my recent post. I post as a healthy way to release my thoughts (I journal too). I do think that many of you who have followed our journey are curious and afraid to ask questions, so sometimes I feel like writing my entries here may help with that.
Some of you may be curious as to why March has such a significant meaning to us.
Did you know that the day Shane passed was the same day I met Paul? Yep, March 30, 2001 we met in Washington D.C.. That same day, 14 years later we would lose our 3rd child.
Shane was baptized March 2, 2014. His lumps were detected March 4, 2014. Our appointments with the pediatrician and CHOP general surgeon were March 5, 2014 and March 7, 2014, respectively.
Our whole rollercoaster journey through CHOP was in March 2014. His diagnosis day was March 28, 2014 after his biopsy March 26, 2014.
We fought. We had a blessed cancer journey with little to no side effects. However, on March 6, 2015 (my birthday) we had our last appointment at CHOP as a regular oncology patient.
Shane’s tumors continued to grow, even after 14 days of radiation and oral chemo treatments. There were no more treatment options left (legally).
What that really means…is as a parent you need to make the decision of whether you are treating your child for you versus impacting the quality of life for your child.
On that day, we left with Shane on hospice care. We were transitioned from regular oncology to the Palliative Care Team. As you know, the PACT team left a significant mark on us. Their child life specialist helped Chase and Ella through so much and we are forever grateful. This is why we help with their funding. To help other families through the transition and bereavement.
It’s also the day I contacted Dr. Keller about donating Shane’s tumors. To us, this was a way to fight even more. While we knew Shane wouldn’t make it, our wish was that no other family or child would have to go through what we did. I wish more people thought about tumor donation and the significant impact it has on research and the future!
So, that’s the synopsis of why March is so difficult. However, life is full of coincidences and dates. I am forever grateful to be Shane’s Mom. The dates are ultimately insignificant to the love and life that is in the present.
Tomorrow is Ella’s 7th birthday.
Those of you who have been with us for a while, may remember that Shane and I had to stay overnight the night before Ella’s 4th birthday (yes, it’s really been 3 years already) at CHOP.
Shane had to have G-tube surgery in order to receive a new chemo treatment. He also had his last radiation on Ella’s birthday.
My little girl was so resilient that day and every day since. I love her kindness and thoughtfulness. Not a day goes by that she doesn’t remember Shane.
We spoke recently about Shane and she told me she doesn’t like to talk about him to people not in our family or who didn’t know him, especially in school. It just makes her sad.
I appreciate her ability to recognize her boundaries and hopefully in time, she won’t be so sad. Until then, she told me he is always with her, he is apart of her in her heart.
