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Why Me

Love and Support for Families with Childhood Cancer

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.

 

 

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

Holiday Giving

The holidays are a time of festive cheer for most, but for a family who have a child with cancer it can mean added stress and anxiety wondering how they will make ends meet.  Why Me tries to alleviate that worry by helping families in a variety of ways.  Listed below are a few ways you can support us as we lessen the burden on our families:

 

1. Hold a Gift Card Drive – The increased needs of a child being treated for cancer often result in mounting financial stress.  Gift cards help lessen the financial burden on families while away from home and commuting to the hospital at a time when income is reduced and expenses are escalating. Gift cards for gas, grocery stores, pharmacies, fast food, restaurants, and VISA/AMEX are especially helpful during such a difficult time.

2. Hold a Food Drive – The food pantry at Sherry’s House is always open to Why Me families.  We are always looking for groups and individuals to host food drives for us throughout the year so that we can continue to offer this amenity to our families. Visit our wish list for an update list of needed items.

3. Hold a Toy Drive – Travel sized games, legos,  and craft kits make great little items for us to bring along on visits to the hospital and make clinic appointments go faster. We also provide gifts throughout the year for birthdays, treatment milestones and more. Due to the compromised immune system of the kids, we can only accept new toys.

4. Make a Holiday Tribute – Give the gift of a donation to Why Me this Holiday Season.  We will send a card to your loved one, friend, or colleague that the donation is made in honor of. To make a Holiday Tribute click here. Please include in the comments section “Holiday Tribute” with the name and address of the person you would like the card to go to. Please call Robyn at 508-757-7734 to make a donation over the phone.  You may also mail your check, made payable to Why Me, to 1152 Pleasant Street, Worcester, MA 01602 – Attention Robyn

5. Amazon Smile – Why Me receives a small portion of every purchase made when you use Amazon Smile and designate Why Me as your charity of choice.

 

All donations can be dropped off during office hours of Monday – Thursday 9-5pm, Fridays 9-3pm.  Give us a call at 508-757-7734 if you have any questions or to request an after-hours drop off.