sherrys_house Archives

Dec 23 2022

Annual Appeal 2022

December 2022

Dear Friends,

Ten years ago, I lost my four-year-old daughter to Leukemia. Sophia was an absolute ray of sunshine. The youngest of my three children, she was carefree, kind, thoughtful, and adoring of her older siblings, Ethan and Hannah. Upon Sophia’s diagnosis, our lives became fraught with uncertainty. Our world turned upside down emotionally and financially.

We were a Why Me family for the seven months that Sophia was on treatment before her unexpected passing – attending the Holiday Party and Easter Egg Hunt and participating in the parent support group. We got by with the support of our community, but once Sophia was gone, we worried about what support, if any, would still be available.

There’s this saying you hear around Why Me, “Once a Why Me family, always a Why Me family,” and it rang true. We were given bereavement support, not just for my husband Eric and me but also for the kids. We met other bereaved families, and our children formed life-long bonds. This support was pivotal in our healing.

Five years ago, I joined Why Me as the fundraising manager. This August, I became the Executive Director and now oversee the creation and maintenance of programming that was helpful to our family, bringing me full circle with the organization. Hospital visits with coffee and donuts, the presents that showed up when Sophia landed in the hospital right before Christmas, and all the small things in between, were such a relief to us and continue to be for other families like ours.

I can assure you that a childhood cancer diagnosis leaves an impact that lasts a lifetime. Just think of the difference you can make! Every clinic visit, support group meeting, and family fun event would not be possible without our extended community of Why Me supporters.

My family is just one of over 800 that Why Me has supported in the last 37 years. You can be a part of continuing to create special memories and new support services through a gift to Why Me. Please take a moment and read through our annual appeal, highlighting a few of our families and their personal journey with childhood cancer. It also includes some of our family events and fundraisers from the last few years and some dates to note for 2023. Consider making your tax-deductible donation to Why Me here, or mail in your contribution to us at 1152 Pleasant Street, Worcester MA 01602. Please note Annual Appeal in the comments section.

By supporting Why Me, you are investing in our future, so we can continue to help children like my Sophia. Best wishes to you and your loved ones for a happy and healthy holiday season.

Warm regards,

Rebecca Kuczarski

Executive Director

“For there is always light, if only we’re brave enough to see it. If only we’re brave enough to be it.” – Amanda Gorman, The Hill We Climb

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Jan 13 2021

Ashlyn Mercier – Miss Gold Coast 2021

Miss Gold Coast is a part of the Miss Connecticut Scholarship Organization, Inc. – supporting the advancement of women in society by embracing diversity, education and civic action. The organization invests in the women of Connecticut to further their education and provides a platform to propel their futures. I will be competing in the Miss Connecticut competition this April! I am beyond excited to embark on this journey and am so grateful to have this opportunity. Throughout this year, I will be working with organizations that help bring positivity into the lives of children battling critical illnesses. Like my Facebook page to follow me along on my journey and the road to Miss Connecticut, as well as my impact with Nick’s Courage: One Smile Goes a Mile.

My brother Nicholas was only two years old when he received his Leukemia diagnosis, the next four years of his life he battled harder than anyone I know. Nick showed my entire family and me what it meant to be truly courageous and to be a hero. Battling pediatric cancer is hard on so many levels; it takes away a part of your childhood that you can never get back. For these kids it replaces what is supposed to be youth sports and playground fun with surgeries, prescriptions, and hospital rooms.

Why Me was there for Nick, to bring fun and lighthearted events back into his life. Through their Family Fun events, Nick got the opportunity to play and have fun like a kid again. For me as a sibling, I got to meet other families and siblings of children with childhood cancer which served as a beautiful reminder that Nick and my family were never alone in his fight. Nick and I’s favorite event to attend through Why Me was Spree Day. Every year we got to go to the 200 Sportsmen’s Club and compete in activities such as fishing, archery, and shooting BB guns. This event brought out my family’s competitive side and brought so much laughter and joy into our lives. The most magical event though is the Holiday Party, which was an event we had the opportunity to attend every year around Christmas time. What blew me away the most as a child and still to this day, is that every single child, including siblings that attended the Holiday Party received a Christmas gift. It brought so much joy to everyone there.

As Miss Gold Coast 2021, I want to give back to Why Me for all of the joy they have brought into my family’s life and all the joy they continue to bring into the lives of others. Through my social impact initiative, as part of the Miss America organization, Nick’s Courage: One Smile Goes a Mile; I will be hosting a series of raffles on my Facebook page. I hope that you will consider purchasing raffle tickets as all the money will be donated directly to Why Me. If you are not interested in purchasing raffle tickets, you can donate directly to Why Me’s website. Thank you so much for your kindness and generosity.

Sincerely,

Ashlyn Mercier

Miss Gold Coast 2021

Nov 20 2020

Consigli Builds Handicap Ramp for Why Me Family

Rihanna’s story

In September 2013, three-year-old Rihanna was diagnosed with leukemia. Her parents did not know anything about the disease except that it was life threatening. Just two months prior her mom had given birth to a baby boy, making Rihanna’s diagnosis even more stressful. They had to make life altering medical decisions for Rihanna while also giving Roddiel the attention he needed.

Rihanna immediately started chemotherapy treatments and began receiving blood and platelet transfusions. She was handling treatments well and maintained her same spunky personality. After having chemotherapy injected directly into the cerebrospinal fluid via lower spine, Rihanna began to experience severe pain. Then she began to have seizures and suffered a cerebral edema. She was in coma and doctors told her parents that she would not survive. After two months in a coma, with her eyes still closed, Rihanna began to move her fingers – it was a miracle. It was confirmed that she had a stroke, thrombrosis, hydrocephalus and a cerebral edema. Their once energetic daughter was now suffering from paralysis and her parents were told there was nothing more the doctors could do.

Her family immediately uprooted their lives and traveled from Puerto Rico to Boston, for treatment at the Dana Farber. They left everything behind for the chance to save Rihanna’s life. They arrived in Boston where a specialized treatment plan was made that would last for nearly two years. In 2014, they moved into Sherry’s House where they spent a few years managing Rihanna’s care and building a new life for themselves in Worcester. Rihanna’s father got a job at TJX Companies where he works hard to provide for his family.

Consigli steps up

This March, her family purchased a home in Spencer that was not wheelchair accessible. While her father has put in a lot of work to renovate the home, building a wheelchair ramp was too big of a job for him. Over the Summer, Why Me reached out to Consigli Construction for help. They were happy to jump in and help with getting materials donated through local vendors and putting a group together to build the family a wheelchair ramp. Throughout the duration of this project, 35 Consigli volunteers assisted in completing the ramp, helping the family be more comfortable and have more freedom in their new home.

This project would not have been possible without the help from Consigli’s partners at Ashland Lumber, Colony Hardware, Dauphinais Concrete, & Karp Building Supply donating materials. A big thank you to the following Consigli team members for donating their time and skills to help Rihanna’s family:

Dan Alden, Mike Boucher, Jon Burton, Peter Capone, Michael Caputo, Anthony Cheschi, Mike Collins, Lewis DeJesus, Ed Demars, Dan Donahue, David Estella, William Feraco, Mark Finnegan, Pat Flanigan, Jon Gagliardi, Steve Gentilucci, Adam Gordon & Sons: Jacob, Aidan & Colin, Matthew Guimond, Mike Hanlon, Dean Hanson, Mike Haseltine, David Kutz, John Laperle, Gabe Mater, Jack Moran, Janice Narowski, Duarte Pacheco, Cam Patch, Jon Potter, Kyle Raposa, Mark Sanchioni, & Jeffrey Scannell.

Consigli volunteers and Rihanna’s parents

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.

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.