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Why Me

Love and Support for Families with Childhood Cancer

What are you thankful for?

“What are you thankful for?” Somehow the question seems to have been blurred with the hustle of everyday challenges. Black Friday sales, what to bring for Thanksgiving dinner, traffic. Being thankful can mean many different things.

When your child is diagnosed with cancer giving thanks takes on many new meanings.  As a parent you are forced to let go of a lot, adjust expectations and hold onto new hopes.  You become thankful for the things that once felt ordinary. A home cooked meal after weeks in the hospital. Visiting with family and friends after months of isolation. Watching your child ride his/her bike through the neighborhood. Simply making it through a difficult day.

“Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.”  – A.A. Milne in Winnie-the-Pooh

During our monthly Parent Support Group meeting we asked some Why Me kids and their siblings what they are thankful for. Their unique perspective is below.

 

 

Healing Retreat

Each year after the holiday rush has settled, in the quiet months of winter,  Why Me hosts a weekend retreat for parents who have lost a child to cancer. The retreat began in the 90’s and has traditionally been held in a camp like setting over a three day two night weekend,  giving parents an opportunity to explore their grief away from the demands of daily life.

 

This year, parents gathered at the The Grotonwood Camp in northern Massachusetts.  As parents arrive for the weekend starting with Friday night dinner, the dining hall swelled with hugs and hellos.   Tables fill with photo boards, albums and mementos – traveling shrines. Between 30 and 50 parents gather at the retreat each year – some have been coming for decades others are newly bereaved –  all hoping to gain some new understanding of where they are and where they have been.

It can be difficult to keep up with life after your child dies.  As the years go on the grief shifts but it never goes away. Taking away the demands of everyday life, the weekend retreat offers parents who are in all stages of loss a few precious days to reflect on the time that has passed and explore their ever changing feelings after loss.  

 

Grace and Anthony Fortunato first came to camp in 2015 after their son Dylan died of relapsed ALL (Acute Lymphoblastic Leukemia) at age 13. At the time, the retreat was held at Hole in the Wall Gang Camp where the Fortunato family shared many memories over the years. “Hole in the Wall was a magical place where he (Dylan) was able to go and feel like he belonged. He could be with other kids like him. His brothers could also better understand his experiences and feel included. They could talk about cancer but also just have fun.”  Ms. Fortunato remembers. She draws the parallels to her experiences at the Why Me retreat.  

 

It has been a difficult year for Grace and Anthony. She has been struggling with health issues and he recently suffered a heart attack.  It is not uncommon that parents find their own health failing after the devastating loss of a child. Years of consuming treatments, hospital stays and therapies often means parents put their personal needs aside. At camp many parents share similar stories. “We spend so much time taking care of everyone else, when it’s over we find ourselves broken in so many ways. It is hard for our friends and families to relate.  It is hard to put our family back together. I worry about my other children, Jordan and Ryan. I was away caring for Dylan for so long.” Mrs. Fortunato explains.

 

Caring for surviving children is the most talked about topic in bereavement support groups. A few years ago it was offered that adult bereaved siblings could accompany their parents to the retreat.  This shift in the programing has proven to be of great value to both the siblings and parents. In bereavement groups everywhere surviving children are often a main topic of conversation. Including their perspective (as adults) at the retreat gives parents of younger children insight on how to best help their children cope with loss and the assurance that their children will in fact be ok. Likewise, adult siblings share that they feel humbled by the depth of care and concern they see from the grieving parents towards their surviving children.  While grief is often thought of as a solitary venture this exchange across generations helps neutralize some of the deepest pains.

 

Grief is, after all, about love and connection. The retreat is set up to provide space for tending  to that love, an act that is often misinterpreted by the outside world. Here, parents can be the parent of a child who is not living.  They can reminisce and tell stories that happened decades ago as if it were yesterday. Sharing experiences as a group creates an opportunity for parents to reflect and see how far they have come, while being surrounded by the insights of those who are further along. After time, parents who once struggled to show up find themselves helping others, something they never thought possible. Together they discover that there are few things more healing than being in community with each other.

 

The weekend is facilitated by Lou Bergholz who has been with the group since 1999.  Lou adds a levity to the retreat, anchored by an awareness and sensitivity to the group’s needs that can only come from time and experience. He opens the door for parents to connect and laugh without guilt – sometimes for the first time since their child’s death. ”This group has become an extended family to me.  I have seen the growth and healing happen among the long-timers, and the hope and connection happen for newcomers. The journey through grieving is not time bound or easily plotted. It’s been a profound honor in my life to bear witness to participants in this group making their way.” Bergholz explains. Camp teaches you that you can have joy and sadness in your heart at the same time.


“I always look forward to seeing what Lou has planned for us.  With Julian entertaining us with music and Debbie having lots of craft activities for us to work on.  It is a good balance.” Fortunato shares. This year, like every passing year, was different and new.  For the first time since its inception the Circle of Healing retreat was held in a new location. While the walls that held us felt unfamiliar at first in the end the weekend proved that the power and the purpose lie in the people not the place.  

Further information regarding our support groups can be found here.

2017 Year End

All throughout 2017 we helped to create new fun memories for our Why Me children and families, whenever possible.  We hosted a few days of school vacation activities in February and again in April. We celebrated holidays with fun events at Easter, Halloween and Christmas.  We held movie nights, games nights and attended a few sporting events in Boston and Worcester. We watched parents bravely share their journey with attendees at our fundraising events.  Overall, we did what we have for the last 30+ years – stand by our families and help provide moments of joy that they will remember long after their cancer treatment.

Thank you to our families for allowing Why Me into your lives.  A special thank you to our donors and volunteers – we couldn’t create so many smiles without your help.

We look forward to making new memories in 2018.

 

Finding Family

We only had 3 Halloween’s with Kai.  The first he was a newborn, just about 2 months old.  He wore an orange and black striped onesie and a tiny pumpkin hat that barely fit.  It was a fairly quiet night, our first holiday as a new family.  The second he wore a homemade turtle costume and we attended our first Why Me Halloween party in 2011.

Kai had just turned one and was diagnosed with a brain tumor; the realities of pediatric cancer were still so fresh and ever changing in our life.  Four months into treatment we had had one brain surgery, weekly chemotherapy sessions, weeks of hospital stays, and countless therapies.  I tried to maintain our life before cancer as best as I could but I knew nothing would ever be the same.   I was forcing myself to continue our typical mom and baby groups  but Kai was quickly falling behind.  After leaving my job to take care of him our world became even smaller.  

As we pulled into the parking lot to the Why Me’s annual Halloween Party I remember scanning the crowds of families pouring out of mini vans, trying to determine which kid in the family was in treatment. I  searched for another kid like Kai – still a baby. With elaborate costumes, face paint and wigs it was hard to tell who had cancer and who didn’t.  As I watched nervously from the car, waiting for Kai to wake, one thing became obvious, everyone was smiling and could not wait to get to the party.

 We entered the room that first year as “the new people”.  It was intimidating to show up not knowing anyone but attending that Halloween party changed everything for me.  For the first time I felt less alone. I talked to other families who had been at this much longer than us.  I saw kids laughing and running and playing, despite cancer.  Watching a room full of cancer families having fun gave me hope.  I imagined that next year Kai too would laugh and run and play despite cancer. Until that point I had been living day to day most of Kai’s life, first trying to figure out what was wrong and then, after diagnosis, just trying to survive.  That day at the Halloween party I felt for the first time that there was more to this cancer life than doctors appointments and therapies.  At Why Me we found a community, a family. 

The following year we attended the Halloween party without hesitation, this time as Harry Potter.   So much had changed by then. Kai was not laughing or running.  He had “failed’ off of three chemotherapy protocols that year and was now on hospice. The noise and excitement was too much for Kai that day and we didn’t stay long, yet I still remember feeling thankful for our short visit.  There we felt supported and surrounded by people who understood. 

Looking back it is hard to believe there was ever a time before Why Me.  I cherish the memories we have from the Halloween parties and family dinners and groups we ended up attending.   The friendships we made within those walls are like no other and I truly do not know where I would be without them. 

This time of year, with the air turning crisp and the nights growing longer, always brings mix of emotion for me.   Some of my fondest memories with Kai are in the early fall but so too are some of my hardest days.  Next month it will be five years since Kai’s death.  Five years since our last Halloween.  I still find myself pulled to Why Me in these times of transition.  There is still some comfort in knowing that each October, as the days begin to darken,  I can always count on a parking lot full of smiling families eager to get to the party, making new memories and enjoying another Halloween. 

 

-Written by Kerri Padgett, Kai’s Mom

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Why Me Summer Camp 2017

Children affected by cancer, and their siblings, often spend much of their time outside of treatment in medical appointments and therapies that can make fitting in other activities difficult.    With medication, physical limitations and long term effects of cancer treatments attending a typical  summer camp is not always possible.  Seven years ago Why Me recognized the need to provide a typical day camp experience for families, within the safety and security of the house, providing an important social and recreational outlet for the children and a small respite for the parents. Why Me mom Gabriela Molinari shares, “Attending camp means the world to us. We forget about fighting cancer and we can enjoy time with other families and see our kids having fun.”  Molinari’s youngest son Thiago was diagnosed with Leukemia in 2014 at age 3. Since his diagnosis, the Molinari family have utilized many services at Why Me and work to give back in any way they can.

The needs and feedback of families like the Molinari’s are what guide growing programs such as camp.  The Why Me Summer Camp program has now grown to serve 30 families over 4 weeks of programing each summer.  Each day of camp features unique activities, crafts and lunch that get the children laughing learning and playing. Cooperative icebreaker activities such as the Hawaiian Play Dough Competition, Marshmallow Tower Competition, and Safari hunt help the children connect to their strengths and similarities outside of their diagnosis.  While holiday themed activities such as the trick or treat costume parade, Easter egg coloring, and gingerbread house making contest help create new memories of activities some of the children may have missed out on over the year.

“Many kids going through treatment cannot play at the beach due to germs, get their lines wet in the pool, or do day trips due to exhaustion. Summer camp is held from 10am-1pm, so the kids can sleep in a little, do their morning routine, have fun at camp, and still have time for appointments or leisure in the afternoon.” explains Alyssa Bellino, camp instructor.

“I really do love every day of camp, but animal week is always my favorite because the kids get SO excited. The animals are like little celebrities to them. I also love seeing the kids support and relate to one another.  Here they do not feel self-conscious or embarrassed. I’ve overheard many kids say “wait you had cancer too?” It’s nice to see them open up to the volunteers or each other about their journey.”

Starting as a high school volunteer at Why Me Bellino has been running camp since 2015.  In addition to the daily running of camp Bellino works with volunteers and local businesses to provide an engaging and worthwhile experience for the families. Why Me camp counts on over 25 dedicated volunteers throughout the summer, including those donating lunches and materials for projects. This year the Molinari family cooked lunches and made fried dough for the campers. “I love to cook and Sherry’s House has helped our family in so many ways.  Making lunch is the least I can do.  We just want to be able to give back when we can.”   

Many organizations and companies attend camp year after year providing special events such as The Museum of Science Reptile Show, Animal Craze Animals, Magic World Amusements & Entertainment and many more.  “For many, it is not easy to face pediatric cancer, but we have been so fortunate to have the continued support of these organizations. Most of them offer a discount or even donate their time and services completely. Camp would not be possible without generous volunteers, who come day in and day out in order to allow the kids to have fun. It’s really nice to see how many compassionate and generous people there are in our community.”

A special thank you to all of our campers, special guests, and volunteers – including Team Thiago and Hillcrest Church for providing lunches. More photos can be found here.

 

If you would like to volunteer time, services or a donation to support this programing please visit https://whyme.org/get-involved/