Why Me

Love and Support for Families with Childhood Cancer

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.

Why Me Holiday Party 2010

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.

Why Me Spree Day 2014

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

 

Consigli Builds Handicap Ramp for Why Me Family

Rihanna and family, 2015
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

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.

 

 

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.

Medical trauma and its effects on childhood cancer families

When thinking about childhood cancer it is not hard to imagine the pain experienced by the entire family. From diagnosis parents, patients and their siblings live in fear of what lie ahead. Invasive procedures, sudden unexpected changes in the families schedule and isolation can lead to feelings of trauma.  On March 20, 2019 Zlatina Kostova, PhD, from the Child Trauma Training Center at UMass Medical School joined the Parent to Parent support group for an important discussion on medical trauma for families of childhood cancer.

Parents, new and seasoned packed the room to better understand medical trauma and gain insight on how to help their families through it. Trauma, Kostova explained, is a real or perceived threat to yourself or a loved one, in this case one’s child.  This threat causes an emotional and physiological response resulting in feelings of terror, helplessness and fear. During times of stress the brain releases hormones to help the body respond, fight or flight, when the threat is removed things go back to normal. Cancer treatment, however, is a prolonged process that causes the patient and their families to live in an extended state of fear.  Living in a prolonged state of trauma can cause changes to the brain, hormones and behavior. Many people report loss of memory, difficulty with attachment, mood disorders and cognitive disturbances after a prolonged traumatic event. People often feel that they are always waiting for the next bad thing to happen.

Many families in the room opened up about their own feeling of fear as well as worrying about the state of their children.  Parents raised concern for the child with cancer and their siblings, about separation anxiety, obsessive compulsive behaviors and depression and anxiety even long after the child has been in remission. Many parents themselves could identify trauma triggers, such as beeping sounds, smells, even certain times of the year, which can instantly send them into a state a panic. Some parents recall ‘falling apart’ at diagnosis while others felt they ‘held it together’ until the illness stabilized and then ‘fell apart’.

Other signs of traumatic stress discussed by Kostova include irritability, difficulty concentrating, hypervigilance, sleep disturbances, and dissociation. If you or your child are experiencing any of these symptoms it can be helpful to know that it is an expected response from the trauma your family is going and has gone through.  It can be helpful for you to talk with your child about these feelings however depending on their state they may not be ready to open up. This is ok says Kostova, “You cannot force a child to talk.” You can help them recognize the associations and feelings.

Self-care is an important part of recovering from trauma, both for the parent and child. Reducing stress and anxiety through mindfulness and coping strategies is something anyone can learn to do for themselves. Kostova suggests that parents can help their children by encouraging them to talk when they are ready.  Answer children’s questions honestly in an age appropriate way, listening for hidden worries and fears. Continue to participate in normal activities (such as school, friends) as much as possible. If trauma symptoms linger it is important to reach out for help.  When looking for medical providers seek those who are specifically trained in trauma when you can. Trauma informed treatment will have a deeper awareness of your child’s condition. You can contact The Child Trauma Training Center for a referral to a trauma based therapist.

It has been shown that a strong social support network is the most important predictor of resilience for all members of the family. Kostova pointed out that all the parents in attendance were utilizing the social support of Why Me/Sherry’s House, and just by attending this group they are being proactive in addressing their family’s needs.  Why Me offers many opportunities for social support in addition to the parent groups including, family fun activities, drop-in play dates, family dinners, or just a friendly place to chat with other parents going through a similar situation. We recognize the importance of social support, which is why family support services at Why Me continue to evolve and grow to meet the needs of each family member.

Once a Why Me family, always a Why Me family, because we know that while the end of treatment is met with celebration and some relief, the journey is far from over. Many parents in the room expressed even higher levels of stress and anxiety AFTER treatment had ended or at time when things felt more stable. Kostova explained that this reaction is typical.   Many people who are dropped into a life threatening situation find ways to cope in the moment out of necessity of what needs to be done (again fight or flight) but when the dust settles your mind has time to process the events in a new way. New fears of relapse, long term effects and shifts in family dynamics become more prominent, prolonging the trauma that a family can experience. One mom, Tricia Campero explains,

“Many people  feel that after our child has finished treatment all of the worries we have will have gone away.  However, it is a hard transition not having the security of the hospital. The fear of relapse never goes away and it doesn’t take much to bring a child or parent back to that time when our stress levels were very high during treatment.”

While the effects of medical trauma on a family are long lasting, some parents also expressed a new appreciation for life and gratitude for the support they have received during this time.  “Finding resilience in trauma can lead to growth,” Kostova shared. Post Traumatic Growth can work alongside trauma, not by eliminating the trauma but to make meaning of all that has happened.  

If you or a member of your family are struggling with overwhelming feelings please know that you are not alone and that there is support that can help.  Stop by the house for a visit, talk to your social worker and utilize the following resources to find the support you need for your family.

The Child Trauma Training Center at UMass

LINK-KID Referral system

To learn more about Medical Trauma Dr. Kostova recommended the book The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma