Why Me

Love and Support for Families with Childhood Cancer

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

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.

 

 

The Road to Falmouth Road Race 2018

In just under a week, on August 19th, in the heat of the summer 6 runners will be running the Falmouth Road Race for Why Me & Sherry’s House. Sponsored by New Balance, the race is one of the showcase events in distance running and woven into the fabric of summer on Cape Cod, like Fourth of July fireworks and Labor Day weekend cookouts. Each Why Me runner was asked to fundraise a minimum of $1,000 to help support our programming.  If you would like to help our runners reach their goals click here to donate and write the name of the runner in the comments section.

Deb and Erica: Deb and Erica are the mother/daughter duo of the Why Me team. They have run the Falmouth Road Race for the last 3 years but their involvement with us began long before that, over 12 years ago.

When my daughter Erica was 12 years old, she selected Why Me for a community service project. We came in for an initial tour and were so impressed and moved by what we saw and heard that Erica wanted to start volunteering that day! She began shortly thereafter – helping to clean and neaten Sherry’s House to provide a comfortable and sanitary setting for the children and their families.

We cannot begin to fathom the magnitude of emotions and physical, financial and logistical effects that a childhood cancer has on a child and their family. However, from our exposure to Why Me, we have come to understand and appreciate the range of services and the amount of caring, love, community support and financial assistance that they provide to families battling a childhood cancer.

This is our 4th year running the Falmouth Road Race for the Why Me team. We will be thinking about the children and their families as we run the 7.1 miles from Woods Hole to Falmouth. We imagine that the strength and determination we will exert on race day is what the children and their families must put forth every single day. The support of our donors has always been the wind at our backs, easing our efforts; we hope that their generosity also helps lighten the burden – at least a little bit – for the children and families who are supported by Why Me.

Emily: My name is Emily and I am a resident of Shrewsbury, Ma. I am a fourth grade elementary school teacher. The reason why I am running for Why Me is because back in high school I was able to see firsthand the great things that Why Me does for families with children battling cancer. I had to do volunteer hours for a class and decided to give my time to Why Me organizing the food pantry. When I was done I was allowed to go outside and play with the children. Every single child had a smile on their face and I enjoyed every time I got to go and volunteer. Why Me is a fantastic organization that looks to help others. When I noticed they were on the list of charity teams I reached out right away. I have wanted a reason to get back into running and what better way to do it then running the Falmouth Road Race for a great cause. I have started training and will be ready for August 19th!

Jeremy: I am fortunate to have chosen a profession in life science research field where I am able to work on developing new technologies that enable advances in discovery and development of new treatments and therapies for cancer. The cancer research community has made significant progress in understanding the basis of tumor development and progression and while I remain steadfast in my belief that these discoveries will translate into new and safer treatments, I want to help families who are facing the battle with cancer today. I am running for the Why Me & Sherry’s House in memory of friends and love ones who have provided inspiration to me and my family.

Kim:  I work for Whittier Rehab Hospital as a Clinical Liaison and too often I see the emotional, financial and physical stress an illness can bring to patients and their families. I am running for a charity that I know will help ease that stress and the money I raise will help Why Me to continue to help and support these children and their families.

Michelle: Hi! I am Michelle and I am running the Falmouth Road Race for Why Me. I love running and what better way to help support this wonderful organization?! I believe in what Why Me does and stands for. I run because the money I raise will help them continue helping families.

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.

 

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 … [Read More...]