Most days, my grief is apart of me. I carry it with me deep inside and may not always react to it. Then, there are days like Mother’s Day, where I can’t control those emotions. My mind will take a dip into that pool of grief.
I think about the handprint projects that will never be, the pictures of Shane as he grows older and most of all, the hugs I will never receive. What pulls me out of that dip are my two older children, Chase and Ella.
I am so incredibly thankful to be their mom. They have been through so much in their lifetime and I am proud to see that they have continued on with smiles, laughter and most of all their memories of Shane. They speak of him daily, talk about seeing signs from him and our favorite is when we talk about “what would Shane say about that?”
As a mother, I’ve had to teach my children how to cope with their own grief of losing their brother. This is not something I ever thought I would have to do. Loss is difficult to grasp and for me growing up, it was something we didn’t talk about.
To me, the most important thing I can teach them about this experience is that while their loss is tragic, they need to continue on in their lives and be happy. Paul and I have explained to them, that bad things happen to good people, but it doesn’t have to define you. They can not be bitter, but thankful for all the time they had with Shane. The time we had with him was a blessing.
When they (or us) are going through a difficult period, we always remind them (and ourselves) that Shane went through so much in his short life and he did so with a smile. He spread positivity and happiness to everyone around him. We have to do the same. It’s what Shane would have wanted. 
What: Shane’s Future Days 2nd Annual Celebration of Life
Where: VE soccer club
130 Davisville Road
Warminster, Pennsylvania 18974
When: Saturday, June 4, 2016
Time: 1pm- 6pm
Cost: $35 per an adult, $10 for ages 12-20 and children under 12 are FREE.
The price of your ticket includes an open bar (beer & wine), picnic food menu, music provided by a D.J., and inflatables and snowcones for the kids.
We will have raffles, a 50/50 and silent auction too!
We hope to make this year’s event as successful as last year’s!
In 2015, SFD’s COL raised $9,728.30 and had 185 adults, 75 kids and many more children under the age of 3 in attendance. Shane’s Future Days matched the proceeds raised. In August, we attended a pediatric cancer nano course in Colorado. There, we donated $20,000 to The Children’s Cancer Therapy Development Institute where we donated Shane’s tumors. The money assisted in purchasing laboratory equipment and funding pre-clinical pediatric drug trials We also were able to donate $2,000 to the Children’s Hospital of Philadelphia’s Pediatric Advanced Care Team. This team supports families whose child is terminally ill and goes into hospice care. In addition, during the holidays we were able to support two families and purchase their holiday gifts, as well as decorations.
Paul wrote this post to fellow Pearl Jam fans. It beautifully explains the reason we named Shane’s foundation after the song “Future Days.”
We named our foundation after the song Future Days. Why? We listened to Lightning Bolt on repeat on our chemo trips to the hospital. Our son, Shane’s favorite song was Getaway. It was because of the pace and the beat, but I’m sure there was a hidden meaning behind it. Our baby Shane was dying from cancer. The line in Future Days, “if I ever were to lose you, I’d surely lose myself” rang true. We were afraid. If we lost Shane, would we be able to go on? Would we lose ourselves? Shane was doing so well. 4 months into his treatment, he was cancer free. But that was only for a fleeting moment, because Shane’s rare cancer always returned.
The week we found out Shane’s cancer relapsed, we met with one of the top doctors in the world, for Shane’s cancer. We were told to enjoy him. “It’s the wind before the storm. You have done EVERYTHING you could as parents. Just love him. We all search for miracles. Your miracle was how well he took to the treatment. Your miracle was his quality of life through his journey. Babies with this cancer aren’t supposed to live long. Shane did. That’s your miracle.”
At that moment, everything changed. There wasn’t anything we could physically do, except continue to love him. And we did. Don’t get me wrong, we did everything in our power to help him, even during his last weeks on earth. With this cancer, you run out of time. We cherished him. Shane never missed a beat, up until the last couple weeks he was with us. After a year and two day battle, he passed away at 19 months old.
During Storytellers, Ed spoke about the song Alive. “To be alive was a curse.” Now, over the years the song has turned into an anthem of life. “The curse has been lifted.” For us, the meaning of Future Days changed. A song about the fear of loss, for us became an anthem of hope.
We move forward as a family. We tell our kids, Shane isn’t gone, he lives in our heart. As painful as it was and still is, we move forward keeping Shane’s legacy alive, through his foundation Shane’s Future Days. We raise money for rare pediatric cancer with the hope that one day they will find a cure for his cancer. While it won’t save Shane today, our hope is that it will save a future Shane. It’s all about hope as move forward into the Future.
We’ll be at the Philly shows. Our foundation is hosting a tailgate April 29th from 4p.m.- 7p.m. at the Holiday Inn by the Philadelphia Stadiums (900 Packer Ave). Come out and raise awareness for pediatric cancer research. All proceeds go to pediatric cancer research. $35 advance purchase/$40 at the door
Music is a gift. It can lift you out of dark places. Thanks for reading.
Shane’s Future Days
presents:
Pearl Jam Tailgate for Good
Hosted with the Phan Cave
to benefit Childhood Cancer
Holiday Inn Philadelphia Stadium
900 Packer Ave, Philadelphia, PA 19148
Friday, April 29, 2016 4pm-7pm
Ticket price: $35 per person
(Price includes: Capital Grille burgers, smoked kielbasa,
and German style wursts, side salads, light appetizers and BEER!)
The reason why?
Events like this enable Shane’s Future Days to provide research funds to assist with purchasing of laboratory equipment, as well as funding pediatric preclinical cancer trials. It also helps us assist the Children’s Hospital of Philadelphia’s Palliative Care Team who provide the world’s best care to patients with currently incurable diseases. Additionally and most importantly, it allows us to expand our footprint, permitting us to provide for children and families affected by rare childhood cancers with support that they need along their journey.
Below is the video our CL therapist made for our family and Paul’s speech from the Celebration of Life. We watched it the night before and could not bring ourselves to show it at the COL. It was too raw and emotional on such a heavy day for us. It is however why we began SFD.
Read More
This was a huge success. Thank you to all that spent the day with us. We truly appreciate it. Read More
Help Us Celebrate
Shane impacted so many people in the short amount of time he was with us. We want to invite you to come and celebrate Shane’s life with us.
Shane’s Celebration of life fundraiser will be held on July 11, 2015 at VE Soccer Club in Warminster, Pennsylvania from 1 p.m. to 6 p.m. This date would have been Shane’s second birthday.
Our family is forever changed by Shane’s journey. The proceeds from this fundraiser will be benefit:
The Children’s Cancer Therapy Development Institute
and
CHOP’s Pediatric Advanced Care Team (PACT)
We donated Shane’s tumors to CCTDI where they are furthering research of rhabdomyosarcoma and other rare pediatric cancers. CHOP continues to be part of our family as the PACT guides us through these next steps in our lives and helps to ensure that our children are dealing with their grief.
The cost of the tickets are $30 for an individual and $60 for a family. This includes food (picnic food and salads) and drink (lemonade, water, as well as beer and wine). We are a family friendly event! There is a playground on site and we will have a moon-bounce and other surprises for the kids!
During the event, there will be a balloon release to celebrate Shane’s 2nd Birthday
Read More
We miss you buddy. We’ll always miss you.
Here is the eulogy from Shane’s funeral. Shane’s strength helped me get through it.
Sometimes superheroes reside in the hearts of small children fighting big battles. Although Shane stood 2 feet 6 inches and looked up to me, the truth is I looked up to him. He was my hero. Shane was born on 07/11/13. 8 Months later he was diagnosed with stage 4 alveolar rhabdomyosarcoma, one of the most aggressive forms of cancer around.
Shane’s diagnosis was terminal. We had two options; one, to do nothing and doing nothing would have given us weeks. The other option was chemotherapy. With chemo, there wasn’t a guarantee that his little body could withstand it. But Shane was strong and resilient. And thanks to CHOP, we were able to turn weeks into a year. For that, we are truly blessed.
We knew the percentages. We chose to ignore them. And I’m glad we did. We lived every day with the hope he was going to beat this. Without hope, you are left with nothing. I know there were many thoughts and prayers sent our way, praying for a miracle. Our miracle was the quality of life Shane lived. The tears we cried pale in comparison to the happiness and the joy he brought us.
Shane’s life may have seemed short to some, but those who were touched by his gentle spirit understood that the quality of his life far exceeded the quantity of time. Nothing slowed him down. Surgeries, chemo, scans, weekly hospital visits – Shane tackled every obstacle with a smile.
Our weekly trips to the hospital became routine. Shane would patrol the hallways, earning the nickname Shane the sheriff. He would greet patients with high fives and fist pumps. Shane brought so much joy to the hospital with his visits. Over the year, the doctors, nurses, and life services group became part of our family. Many chemo visits involved us rushing down the shore after his treatment, because Shane loved the beach. The doctors and nurses made this happen for us. Nothing, not even cancer could slow him down.
He grew up as any toddler would. Shane took his first steps. He spoke his first words…Ella, and eventually said everyone’s name in his family. Shane loved playing with his brother, whether it was Star Wars or soccer. He would kick the ball and yell goal! Shane also loved playing with his sister, Ella. She would set up the blocks, and Shane playing the role of Godzilla would knock them down and laugh hysterically. He thought the world of them, he wanted to be just like them.
A few days before Shane passed, we were at his big brother Chase’s soccer game. Shane’s body was withering away and the words he spoke turned into grunts, but the fight in his eyes was visible. Chase got hurt and came out of the game. Shane, who was in Michele’s arms, wiggled out and walked over Chase, as Michele followed behind. Shane patted Chase on the shoulder, but he wasn’t comforting him…no, Shane patted him, and pointed out to the field with a grunt, telling him, man-up big brother and get back out on the field. It was classic Shane.
Shane lived on his terms and went out on his terms. To quote Stuart Scott, the ESPN anchor who passed away from cancer, “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” These simple words have been so impactful to our family and symbolized Shane’s journey through life.
Shane may have lost the fight, but he won the battle. He beat cancer. He lived every day to the fullest. He taught us to cherish every moment we have. As a family, we beat cancer. Many times cancer can rip through a family, tearing it apart. Cancer brought our family closer together. We are so thankful for the love and support we received from family and friends over the course of this journey. It has and will continue to help move us forward.
Shane’s fighting spirit has given us determination to build upon his legacy. We created a foundation focused on rare cancer research called Shane’s Future Days. Without a voice, nothing will change. Shane’s voice will be heard. Please join us we start the first day of Shane’s future days.
Shane Joseph Metzgar of Jenkintown, Pennsylvania passed away after a brave year-long fight with cancer on Monday, March 30, 2015 at his residence. He was 19 months old. Shane was born July 11, 2013 in Abington, Pennsylvania, the beloved son of Paul J. Metzgar and Michele Metzgar (nee – Hunt); cherished brother of Chase and Ella Metzgar. He is also survived by his paternal grandparents Paul W. and Helene Metzgar, maternal grandparents John J. and Christine Hunt, aunt Dana Lewullis and her husband Gabriel, uncle Daniel Metzgar and his fiancée Megan Gannon, and cousins, great aunts and uncles.
Shane’s life may have seemed short to some, but those who were touched by his gentle spirit understood that the quality of his life far exceeded the quantity of time. Shane taught us to live each day and cherish the memories we made with him. His fighting spirit, has given us the determination to move forward and make a change for him and children like him.
Shane will be remembered for his tenacious spirit, deep blue eyes and warm smile. He enjoyed listening to music and kicking the soccer ball around. He loved to watch and play with his brother and sister and cuddle with his pug Monty. Shane coveted his Arsenal hat, along with his Tigger and Curious George stuffed animals. At home, he was affectionately called “Baby Shane” and his caregivers at CHOP had nicknamed him the “Gerber Baby” and “Shane the Sheriff,” as he would always be seen patrolling the halls in the oncology clinic.
We would like to thank our amazing family, supportive friends and everyone who has followed and joined Shane’s journey. We are eternally grateful to his oncology doctors at CHOP, the nursing staff in the oncology clinic and inpatient floors and every other department at CHOP who helped care for our son.
Relatives and friends are invited to his Funeral Mass on Friday, April 10, 2015 at 10:00 A.M. at St. Cecilia Church, 535 Rhawn Street, Philadelphia, PA 19111 www.stceciliafc.org. The family is requesting that you wear color as they would like to celebrate the life of Shane. A celebration of Shane’s life will be planned for the future and this website will be updated when details are available.
With heavy hearts, we want to let everyone know Shane passed away yesterday morning. He went peacefully. This past weekend was a challenge as Shane took a turn for the worse. Time was of the essence. We were able to take final pictures and make various keepsakes with him. More importantly, we were able to say goodbye. We are truly blessed for the time we had with him. Blessed with all the love and support from family and friends. We can’t thank you all enough. Shane made us proud. He fought up until his last breath. We hope we make him proud. We are donating his tumors to the Keller Research Center, with the goal of finding more information about his type of rare cancer. In the world of rare cancers there is limited funding for obvious reasons. Without a voice, nothing will change. We hope Shane’s legacy can change that.
Information regarding funeral arrangements to follow. Thanks again for all the love and support.
We still plan on attending the PhanCave Opening Day fundraiser on Monday, April 6th. We hope you join us. This is the first day of Shane’s Future Days.
Love,
The Metzgars
Follow Us