Why Me

Love and Support for Families with Childhood Cancer

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Aug 25 2020

Why Me Family Fall and Winter Update

 

 

 

 

 

 

 

Dear Why Me Families,

First and most importantly, I hope you and your family are healthy and safe.  I know that these are unprecedented times, and we are learning to cope with the changes to everyday life.  As a family that has dealt with childhood cancer, you are used to having to navigate the seemingly impossible and face uncertainly head on.  On top of that, I know many of you are being asked to juggle more than ever including stepping into unfamiliar roles.

This is also true for all of us at Why Me.  Since its inception in 1985, Why Me and Sherry’s House has existed to facilitate personal connections and in-person support for families with childhood cancer. We have had to find new ways to re-imagine these connections and assistance.  Over the last couple of months, we have had to alter how we provide our services:  maintaining relationships with our families through email and phone calls.  We have taken our support groups virtual-so that families can stay connected and we have continued to think outside the box for other ways to help make families smile and create a few fun memories along the way.

As we look to the future, we have had to make some difficult decisions regarding some of our events in the coming months.  While we remain committed to helping our families, it is in everyone’s best interest that we cancel all major events through the end of the year.  This includes our Spree Day, Halloween Party, and Annual Holiday Party.  We feel that it would be irresponsible and unsafe to host traditional gatherings for our families.  However, we already have some truly fun and creative ideas in the works so that we can still celebrate these special holidays in safe and unique ways.  We will be in touch in the coming months with details and specifics for each new and re-imagined celebration.  Our number one priority continues to be our dedication to our Why Me families and providing assistance during such a trying time in your life.  While the Covid-19 pandemic may last longer than we initially thought, we are not going anywhere either.  We remain committed to mission of providing love and support for families battling childhood cancer.  While things may look a bit different this year, we will still provide countless opportunities for our children and families to create everlasting memories!

One final note I want to include is another change in the coming months.  I am expecting baby #3 come early September and will be going on maternity leave at that time.  The remainder of the Why Me staff is set to step in and provide direct support to our families in my absence.  All virtual support groups and direct family assistance will continue as planned.  Please don’t hesitate to reach out to the office for any needs you might have or you can email Rebecca Kuczarski at rkuczarski@whyme.org  While I will periodically check email, I encourage to you to reach out Rebecca or the office staff.  Please do not hesitate to reach out to me over the next few weeks if you have any questions or concerns as my number one concern is to make sure all of our families continue to feel supported.

Thank you!

Danielle Sikonski, Director of Family Services

 

From time to time we also utilize our Facebook page to keep up to date with families.  Please consider following along.

 

 

Category: Assistance, Family Posts · Tagged: 2020, childhood_cancer, COVID-19, pandemic, sherrys_house, why_me

Aug 04 2020

“The New Normal” and what do we do with it?

“The new normal”

The Covid-19 pandemic has changed much of how we live our lives – and seemingly overnight. Before the shutdown, business owners almost universally told me they were having their best year ever.  I , myself, was looking forward to several performance dates with my band, a new hiking adventure in British Columbia with my boys and some great family fun events at work. All at once, everything ground to a halt as each of us struggled to adjust and make sense of events that evolved daily. Each day felt less and less familiar and plans that felt unchangeable just a week before were now cancelled. Parents and other caregivers tried to find the words to explain to children that which they themselves did not fully comprehend and offer comfort while feeling very unsettled. This was not just a regional or national disruption but a global crisis. While the pervasive effects of this pandemic are unique for most of the population, they are eerily familiar to families that live with childhood illness.

For families living with childhood cancer, one day everything is the same, and the next, everything has changed. The plans you made, your schedule and commitments are all on hold. The routine and rhythm of life provide familiar stability, which is comforting. When that routine is gone, we instinctively know something is very wrong. Fear and anxiety become new companions. Does this sound familiar? If you are a family living with childhood cancer this is exactly what happens. Even after you adjust to the shock of diagnosis and to the many ways life has changed, you realize that you have daily decisions to make that the rest of the world cannot understand. You are always weighing the risk and benefit of simple outings. If your child is immune compromised they cannot come with you to the store to go shopping and get out of the house. They cannot go to a party or to the movies. You might get sick from being around other people, and the risks are too great to outweigh the benefit. This is very isolating. I have been struck by how many of our families have remarked, “Now the rest of the world knows how we live.”

For those of us who have endured long hospital stays with our kids or lived through months in “isolation” for a bone marrow transplant, the outside world is risky. We watch people touch their faces and cough. We travel with hand sanitizer. We get angry with people who go to the store with a child with chicken pox because “well, everybody gets it”. These are risks to our children’s health. Therefore, this current health environment is all the more risky for our families because they are a “high risk population with underlying health issues”. This virus and the resulting loss of routine triggers a kind of PTSD response in our families because it harkens back to our only other experience of such loss when something was very wrong.

So what do we do with these feelings? How do we cope, and what can we learn from the experts on disrupted lives? No, I am not channeling Anthony Fauci, I mean our kids. When I meet newly diagnosed families, I tell the parents to follow their kids’ lead. Children live in the moment. They do not project. They do not worry about what was or what will be. That is the secret; be present, be grateful for simple things, and find joy wherever you can. Make the most of whatever we have and remember that you may find joy by helping someone else find it. Children are experts at this, and they will show us all the way if we let them. Personally, I hate the phrase “new normal” because to me it surrenders to the status quo and admits powerlessness. We will have our lives back and we will get there with grace, dignity, joy, and kindness.

Why Me and Sherry’s House exist to facilitate personal connections and support for families with childhood cancer. We have had to find new ways to re-imagine these connections and support. Here are some of the ways we have moved forward.

Since mid-March, we have maintained relationships with our families through email and phone calls.  We have offered non-perishable food and essential items from our pantry to our families.  We provided bags of “summer fun” to help bring a few extra quarantined smiles to our younger children.  All of our support groups have gone virtual- because childhood cancer is isolating enough without a quarantined pandemic.  We have continued to think outside the box for other ways to help make families smile and create a few fun memories along the way.  In June, we hosted a virtual trivia night and a drive-in movie night with all social distancing protocols in place.    It was so great to see the families at the drive-in movie and everyone said, “This feels so normal!” We are doing eve

rything we can to continue to support the families who need us most right now while remaining committed to their overall health and safety.  In the coming months we will continue to provide support to families as needed.  We also have some new family fun events in the making over the coming months that will continue to help us provide special memories for our Why Me families.

– Written by David Hagan

David began his relationship with Why Me in 1994 after his son, Ben, was diagnosed with leukemia at 19 months. When Ben succumbed to his illness in 1996 following a bone marrow transplant, David began coming to the Circle of Healing bereavement group and never lost touch with his extended Why Me family. In 2006, he became a full time volunteer and eventually  joined the Board of Directors.  David became the facilitator for the bereavement group, which he still runs and currently serves as the Executive Director.

Category: Family Posts

Aug 19 2019

Brain Tumor Talk

In early summer, Why Me hosted Brain Tumor Talk – a parent meeting with the focal point being the unique issues that children and families face when diagnosed with a pediatric brain tumor.  Why Me focuses on bringing families together knowing that the power in gathering reaches far beyond the diagnosis. We also know that brain tumors present families with many challenges that are unique to their disease.  According to Johns Hopkins “Brain tumors are the most common solid tumors affecting children and adolescents, with close to 5,000 children diagnosed each year. Because of their location, some pediatric brain tumors and their required treatments can cause significant long-term impairment to intellectual and neurological function.”

There are dozens of types of primary brain tumors, each with their own complications. Some grow slowly deep inside the brain making surgery impossible. While others are located in a resectable area but may spread much more quickly. Several pediatric brain tumors have no successful treatment options and are fatal.  Most brain tumors will have some effect on the child’s growth and development, whether it be from the tumor itself or treatment related issues.

To help sort through some of these challenges and complexities Stephanie Freeman, Social Work Coordinator at Children’s Brain Tumor Foundation led a discussion with several Why Me brain tumor families. As each family shared their story, they spoke of many common threads.  While some children were newly diagnosed and others have lived a decade with their tumor, they had one commonality – all of the children were struggling with some physical effects of the tumor or its treatment. Tumors growing in different areas of the brain can cause a range of symptoms and damage.  Seizures, vision disturbances, issues of balance and hormone regulation are just a few of the effects on a long list. The treatments, surgery, chemotherapy and radiation can also cause additional damage to vital brain tissue leading to paralysis or effects on other body systems. While many children with certain brain tumor diagnoses do achieve long-term survival, the lasting effects can be devastating.

Due to the delicacy of brain tissue, treatments to manage tumors tend to be lifelong and present zero options for tumor removal. In other words, many brain tumor patients will never hear the words remission or cure.  Some children require additional therapies and medical support to manage the physical, cognitive and emotional changes the brain tumor has caused. Many families in the room shared concern about physical limitations, sleep disturbances, emotional regulation and medication management that all affect the child’s school, social and home life.

Along with a cancer diagnosis comes great challenges to the child and entire family.  Much of the coping and healing come just from being in the room with others who understand.  While answers are often hard to come by, participants in the group expressed that just hearing others stories and knowing that they are not alone is what helps them push forward.

 The other thing that happens when people gather is the sharing of resources.  In addition to parents troubleshooting IEP’s, medical care plans and social stigma. The Children’s Brain Tumor Foundation was there to give additional virtual and in-person support opportunities.   The Children’s Brain Tumor Foundation (CBTF) is a national organization that works to “Improve the treatment, quality of life and the long-term outlook for children and families affected by brain or spinal cord tumors.”  CBTF offer support groups, mentor matching as well as in person events and retreats. One upcoming events “Just Us”  is a three-day retreat focuses on supporting the father and child relationship.

As always, Why Me is dedicated to connecting families with the resources that may be helpful to them, as well as expanding our own support as needs arise.  After positive feedback from this first group, we have committed to host a quarterly Brain Tumor Talk throughout 2020.  Our next meeting will be held on Wednesday October 2nd at Sherry’s House. If you or someone you know may benefit from this group please reach out to Danielle Sikonski, Director of Family Services, at dsikonski@whyme.org for more details on upcoming talks.

Category: Family Posts · Tagged: brain_tumor, brain_tumor_talk, cbtf, childhood_cancer, sherrys_house, support_group, why_me

Feb 28 2019

The ripple effect of pediatric cancer

Walking into the clinic waiting room for the first time the weight of it all exploded.  Today my baby will start chemotherapy. It had been five weeks since his initial diagnosis and in that time my world had already begun to shrink.  Everyday brought a new set of challenges that took 100 percent of my attention. And while our friends and family were devastated and supporting us as best they could, the reality was when your child is diagnosed with cancer everything in the outside world stops. We were living in survival mode, a deep dive into endless research, sleepless nights, and constant appointments. Our life before cancer quickly became a distant memory.

Walking into the clinic for the first time childhood cancer grew beyond our one story.  We sat surrounded by families. So many families. The newer ones, like us, stuck to the quiet corners of the room, reluctantly glancing up as bald children run by. The “veterans” knew the nurses and staff by name.  They let their kids run free and play games, watching from a distance as they sat in circles talking with the other parents. They looked relaxed and strong, while I clung to my baby trying not to cry.

It was indescribably overwhelming to realize that our devastating diagnosis was just one of so many. By the end of that first visit I too learned our nurse’s name.  The kind woman at the front desk took her time to explain the lunch menu and parking passes and our upcoming treatment scheduled. On the way out one of the moms casually said “See you next week.”

Week after week these people, the nurses and doctors, the other moms and dads, became like family. We spent countless hours a week with them.  We learned each other’s diagnosis stories and treatment protocols inside and out. I relied on them for advice when treating side effects or picking new protocols. I fell in love with their kids and they with mine. These relationships grew beyond passing hellos/goodbyes at clinic into supportive strong bonds, leaning on each other to get through the tough days.

Cancer causes a ripple effect. Each drop, each diagnosis, starts a small wave that eventually washes over all of us. While caring for your own child you spend weeks, months even years by the side of other children and families.  The losses and gains along the way become collective – a feeling that we are all in this together. When a child is doing well we all celebrate. When a family is given bad news we all mourn because we all know it could have just as easily been our child.   

Even when things get difficult, there is strength in the unity that comes from sharing “the childhood cancer diagnosis.”  Recently Why Me hosted a meeting, facilitated by a social worker, for a small group of families who had been struggling with how to cope with and support each other.  The parents participating in this meeting truly consider each other family. They feel each other’s pain, deeply, but also expressed that despite the sad and complex feelings that come when a child is not doing well, they will show up for each other.  To be in the company of other parents who truly “get-it” both good and bad is ultimately comforting.

Each family reacts to these situations differently.  As helpful as it can be to be a part of a community of people with similar struggles it is also important to check in with your individual needs.  In addition to peer support some find it helpful to speak with an individual counselor, attend a formal support group or even seek support from ones spiritual community.

Personally I found support in many of these places.  Helping support others lightened our burdens, but I would not have felt that way if I too wasn’t being lifted up and supported by others.  However, there were times I just needed space to let our story unfold without the input or worry of others. Having the community we had at Why Me allowed for all of those feelings as we came in and out of support groups, formed close connections with other parents and were referred to additional resources to support our family beyond Why Me.

Category: Family Posts

Dec 24 2018

2018 End of the Year

All throughout 2018 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 had a fun evening out with our Why Me Moms. 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 brought our teen population together for a few fun outings and created a new volunteer group for those that wanted to “give back”. 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 2019.

Category: Family Posts, Why Me News

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