Pods of Hope

When Margaret Kobylus’s daughter Angela was diagnosed with Osteosarcoma in 1992 it turned their whole world upside down.  Angela had started to complain of leg pain earlier in the year and after many trips to doctors with no real diagnosis, other than growing pains, Margaret took Angela to see her Orthopedic doctor.  From there everything happened pretty quickly, the next day Margaret and Angela found themselves on the way to see oncologists in Seattle where they would learn Angela’s diagnosis. As a single mom Margaret found comfort in the support she received from family, friends, her work and a group called the Candlelighters (the ACCOIN of today).  She found comfort in knowing other families struggling through a Childhood diagnosis just as she was, comfort in not feeling so alone in this tumultuous fight. Angela’s ability to stay positive and focus on things like singing and journaling brought strength not only to Angela but to everyone who came in contact with her.  Her favorite thing to say to people was to “take one day at a time”.  Margaret recalls how amazed she was at her daughters strength and wisdom through out her long 5 year battle with cancer and feels very lucky to have had such a close relationship with her. Sadly, Angela passed away at the age of 20 1/2, five years after her diagnosis.  Although she had reached remission and things looked to be heading in the right direction, the cancer came back and this time it had spread to her other leg, into her back and throughout her body. Margaret did not walk away from the Childhood Cancer world after Angela’s death in 1997, instead she decided stay involved with the Candelighters (now ACCOIN) and has served on the board in one capacity or another ever since.  We are so grateful for her and her desire to continue to help families through this fight.

Emily Garcia is a vibrant, giving, thoughtful young woman whose life was partially shaped by the Nueroblastoma diagnosis her younger sister faced at the very young age of 7 months.  Emily’s experiences through that journey and through the eventual loss of her sister Pricila when Pricila was just 15 months old has given Emily a unique perspective on her own life and the goals she sets for herself.  The drive and passion she has to make sure she is living her own life to the fullest knowing that her sister Pricila was not afforded the same opportunity, is a remarkable outlook for a teenager. Emily has an old soul, her experiences have made her perspective much wider than most 18 year olds. Her want to give back and help families going through the experiences her family went through with Pricila’s cancer diagnosis is apparent. When asked how Pricila’s cancer diagnosis and the eventual loss of her sister has impacted her life Emily said ” It makes me realize life is beautiful and to live life to the fullest” and to “strive for everything”. I feel very lucky to have had the opportunity to meet Emily and I am confident that she will be able to handle whatever life throws at her.

Being grateful….truly a much more complex topic than one would think.  Our first round table discussion brings up some very valid points about gratitude and being grateful.  Everyone has struggles, everyone has days where being grateful is the last thing on their mind.  Can you shift your attitude in the moments when life is dealing you a bad hand? Can you think of a time in your life where you were able to take yourself from a place of sadness and despair and focus on the things you are grateful for? Of course we are all human and being grateful at all times is not a possibility, but reminding yourself each day of what you do have to be grateful for and focusing on the positive in your life can be a real asset emotionally, physically, and spiritually. A beautiful poem by an unknown author can sum up what many of us were feeling in our discussion. Knowing that life is full of struggles and using those struggles to amplify the joys in our lives.  

Jennifer Wigen’s oldest son Josh was diagnosed with Hodgkin’s Lymphoma at the tender age of ten.  Josh had already witnessed what cancer can do to a person when his grandfather was diagnosed with brain cancer just before Josh’s diagnosis.  Being a 10 year old who is aware of what cancer is and old enough to understand what some of the implications are makes for a difficult journey.  On top of Josh’s awareness of Cancer and fears related to it he also had an extreme fear of needles and getting shots or blood drawn.  If you have any knowledge of Cancer treatment you know that needles, shots, and blood draws are a must and done frequently.  Josh’s anxiety was amplified and made his journey that much more difficult. When speaking to Jen about the trials and tribulations of Josh’s cancer treatment I asked her what was the most difficult part for her.  She let me know that being away from her kids Abbey and Matt during Josh’s stay at Seattle Children’s for radiation was the most excruciating.  She felt as though she was somehow failing them, even though they spoke daily, being away from them and not being able to support them in the everyday happenings in their lives makes her emotional still to this day.  I think many of us parents go through this feeling of not being able to be there for our kids without cancer while our lives become dedicated to doing everything possible to ensure the health and success of the child with cancer.  Although in everyone’s eyes you are doing all you can, the Mom guilt overrides any logical rational and we end up feeling inadequate at times.  Knowing you are not alone in this journey and that Mom’s and Dad’s out there are experiencing those same feelings can help to ease some of that struggle. When asked if she had anything to share with families just starting out in the Childhood Cancer life Jen expressed that “having a child with cancer humbles you” and you need to allow people to help.  Being a person that doesn’t like to burden anyone with her struggles realizing that accepting help from others is necessary and allowing others to experience the joy of giving is also a gift. Josh is out of treatment and doing fantastic.  He is playing football and flourishing in his academics.  Of all of Josh’s accomplishments one of Jen’s greatest sense of pride comes from Josh overcoming his extreme fear of needles.   Jen said “I was more proud of him for that than probably any “A” he may get or any accolades from doing any sport that he does.”  We are all proud of Josh and all his has overcome and we will all rooting for him and the whole Wigen family as they continue on their path post cancer treatment.

There is something truly special about people who choose to walk down the Childhood Cancer path without having a member of their own family with the diagnosis.   Savannah is one of those very special people who brings comfort to Childhood Cancer families. Savannah is a dedicated member of the ACCOIN staff, who brings her talents to the table.  She is currently in school to become a Spanish teacher and has traveled and worked in Peru giving her a unique perspective of real life struggles. We all know that Savannah will be successful no matter what life throws at her and are happy that she has chosen to devote so much of her time helping Childhood Cancer Families. To learn more about ACCOIN and what we do to help families going through a Childhood Cancer diagnosis check out our website at https://wwwlacco.org/inlandnw/