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.
In continuing with our efforts to support the Children’s Cancer Therapy Development Institute, we are proud to announce that we will be donating $10,000 towards their ARMS research project.
Paul and I will not be able to attend the pediatric nano course this year. We hope to travel out to their new facilitates in Portland, OR next year with the children.
Paul explained at our second annual Celebration of Life where exactly the money we raised goes. Here is the speech he gave:
I wanted to give an update as to what we have been up to and where the money raised goes from our events. I always think that’s important.
From last year event, we raised close to $10k. Our foundation matched the amount raised and we donated $20k to Children’s Cancer Therapy Development Institute (www.cc-tdi.org).
This past August (8/2015) we attended a nanocourse at the CCTDI lab in Fort Collins, CO. We learned about the process and pitfalls of pre-clinical trials, the cost and red tape of taking a drug to market, and the importance of cell tumor donations. We also met Dr. Keller and the team at CCTDI. This is the lab where we donated Shane’s tumors.
This year the lab was able to create Shane mice by injecting his tumor cells into mice. From these tumors cells, there were able create new vibrant cell lines of Shane’s cancer. These cell line will be used to test various drug therapies. The cell lines previously studied were from the 1960’s.
We donated $2k to the Pallative Care team at the Children’s Hospital of Philadelphia, the PACT team, which is the life service group that works with kids in hospice. They continue to provide support. The PACT team is on a tight budget. The $2k was used for supplies and a new computer.
This past Christmas we adopted two families for the holidays, and purchased gifts for the entire family. We even bought all the decorations for one of the families, because her life was spent at the hospital with her daughter. While it may seem like a small gesture, if it can create a moment of happiness and a smile, then it’s all worth it. When you are going through something like this, you are grasping for anything that resembles happiness. We hope to build upon this and increase the number of families.
This was extremely important to us. During our journey, we had various groups reach out to us at Christmas. They wanted to buy for everyone in the family. Michele and I told them to take our gifts and give them to another family. But they were persistent. So I said Arsenal gear. What did I get, but my most prized possession, Shane’s Arsenal hat, the only hat he would ever wear. He even gave me an earful for wearing his hat, when I was shoveling.
Last month we posted as to why we named our foundation Shane’s Future Days. There was a major detail that I left out. Future Days is a Pearl Jam song, the last track on the CD Lightning Bolt. We listened to LB on our way to and from clinic. On a night after Shane’s Wednesday treatment, Michele, Shane and I were having dinner at a restaurant. There’s music playing it background, and what comes on mid-meal? It was “Future Days.” First, the piano plays, then the line “if I ever were to lose you, I’d surely lose myself”. Michele and I started uncontrollably sobbing. Neither of us could stop. It was like the damn burst, all of this pent up sadness came flowing out.
Shane is sitting on Michele’s lap. So what does he do? Does he comfort us? Not this time. While we are both sobbing, Shane took the opportunity to grab Michele’s beer glass. We stopped and looked at him and he started belly laughing. And our uncontrollable sobbing turning into uncontrollable laughter. This was classic Shane. Shane always knew how to make a situation better. He made everything better. A true inspiration for us.
At that very moment, we were so sure Shane was going to beat this. And looking back, he did beat it. He lived every day with a smile, fighting one of the most aggressive forms of cancers around. Now, we move forward with his strength and determination to make difference. For us the song, Future Days, became an anthem of hope.
I heard this quote about tragedy last month. In dealing with tragedy, “you can’t get around it, you don’t go under it, can’t go over it, you have to go through it.” Events like this are part of our healing process, of getting through this tragedy, spending time with family and friends and raising money for cancer research. We hope, that over time, our contributions will go towards helping to save Future kids diagnosed with Shane’s cancer. This is Shane’s foundation. We are all his voice.
Two weeks ago tomorrow, Ella had her tonsils and adenoids removed. It was deemed necessary and so we headed back into a medical setting.
Everything went well. It was all a familiar in terms of pre-surgery and post-surgery. The whole process brought back a lot of memories for Paul and I.
It also brought them back to Ella. She was brave and did very well. The next day, however, I found her in her room hysterically crying. I asked what was wrong and she just turned and looked at me and said “Shaney.” “I miss my Shaney so much.” We talked it through which is what we found works best for our kids.
Around the same time, I saw a post about a local 9th grade boy who was fighting cancer. It was his birthday and he was asking for people to donate toys to CHOP’s oncology unit. How incredibly selfless and an amazing idea! It’s not the first time I’ve witnessed this about children who have cancer, but I’m always amazed how they put other people ahead of themselves.
I told Ella about him and we took off on a shopping spree. She made sure to get the things she remembered most about her time spent at CHOP. Most importantly, she picked out a special toy that she thought Shane would love the most. We delivered the toys to him to distribute and she was one proud sister.
In our family, we celebrate birthday weeks.
Monday, Jully 11th, was Shane’s 3rd birthday. Chase and Ella did a wonderful job planning our day.
It was full of soccer, the zoo, cake and a sunset balloon release. It was busy, which is how we like it. The rest of the week was full of soccer and friends. It ended with a family trip down the beach. The whole Metzgar family was together in Shane’s favorite place.
I wish I could say it gets easier, but really it doesn’t. The feelings get softer, but the pain runs deep. Paul and I listen as Chase and Ella converse. Their conversations are ones that at their age, we never had. We either weren’t exposed to the reality of death or weren’t mature enough to emotionally handle it. These two are truly wise beyond their years.
Thank you for all the warm wishes to Shane and our family. We truly appreciate you remembering our sweet little man!
Side note: I grabbed three candles to light Shane’s cake. Yellow, red and green. We sang “Happy Birthday” and after blowing them out, one candle re-lit. It was green, Shane’s favorite color.
Out of a pack of 28, only 8 were re-lighting. The kids got a kick out of it.
