Ash and Feather: Living with Brain Tumors and Cancer

Today is Glioblastoma (GBM) Awareness Day “Every day, a doctor walks into an exam room and tells a patient that they have been diagnosed with glioblastoma (GBM). A patient learns that GBM is the most common, complex, treatment-resistant, and deadliest type of brain tumor. #GBMDay works to change that conversation. We seek to honor and remember, as well as to take action to help others currently facing glioblastoma, and all who may be impacted in the future.” Learn more at the National Brain Tumor Society.

 We didn't have much in common father and daughter I went left, you went right I opened and you closed I listened while you talked I was young, you were old I was healthy and you were sick I was a blank slate while you knew everything  I wore blades, you wore quads I watched and you stole the show Then you had cancer. Now I do too. I will survive mine, yours finished you. I wish I could have told you. You would have understood. Your eyes expressed sorrow and love. Mine do too. I wish you could have told me All that you knew. Maybe there is more, not less. I am not the little girl you once knew. Because you had cancer and now I do too. -Poem and block print by Sharon Frances

Why I wrote Ash and Feather, by Sharon Frances

Our podcast, Ash and Feather: A Bird/Girl and Her Father’s Cancer will air on Monday July 27. Countdown: 5 Days to release. Find us on Anchor FM. In the meantime, please enjoy Sharon’s video on why she wrote Ash and Feather. Sharon’s father passed away from glioblastoma.

The stories below speak to the unspeakable endurance and inspiration of parents struggling through the impact of tumors and cancer in the brain. After you read, consider attending and sharing our Ash and Feather podcast and events to honor, learn and advocate for families impacted by brain tumors.

A Mother Tells Her Story, by Louisa Higgins

by Louisa Higgins, VAPA Coordinator, Riverside County Department of Education

When my son was twelve, he was diagnosed with a brain tumor.  The news absolutely leveled me, and during the six weeks between his diagnosis and his surgery, I woke up every day crying and went to sleep each night crying.  My coping skills revolved around putting the fear and grief I was feeling into a box, and compartmentalizing it during my work day so that I could function. After my son’s surgery, I was facing a new kind of reality, where I had to get up round the clock to medicate and check on him.  I was devastated by the fact that he was so altered by the surgery.  It was like working with an older person after a stroke.  My bright, happy boy changed overnight into an entirely different person, and it was incredibly difficult for me to face the new normal. I don’t know why I did it, but I started to paint again.  I was in my first year as a Teacher on Special Assignment for the Arts, and I was working with a lot of young artists.  They repeatedly asked me, “Why don’t you paint?” but I didn’t imagine myself as an artist.  Finally, I was so overwhelmed and dejected that finally I tried.  Each night, after tending to my son, I would go into the garage, put on world music, and paint my heart out for hours. I wasn’t very good from a skills perspective, but my work was raw and truthful and it was most definitely autobiographical.  I didn’t have the means or support to seek out therapy or medication, and so all of my feelings poured through me and into the art.  It was cathartic and it helped me to cope in ways I didn’t understand.  I literally reached a point where it was impossible for me NOT to be creating as much as I could. After a year, I had produced so much artwork that a kind soul offered me a solo show.  I was shy to put my work out there, because it was so personal and so vulnerable, but friends, family and the community celebrated it and uplifted me.  In the end, it has never been about other people’s appreciation of it.  I do it for me.  I hardly ever sell my work now, I just give it to people who enjoy it. That life changing experience helped me know how much art heals and saves.  I am a passionate advocate for the arts being a part of all student’s lives, because I know they will need it as a tool to be well and to cope.  Both of my daughters now paint, and they are both post college graduation and pursuing non art careers.  They do it because it relieves stress, feels good to them, and produces results that please them. I hope that everyone gives themselves the opportunity to access the arts in a non-judgmental way.  We are sentient beings, and we need a way to express and share those feelings.

–Louisa Higgins is a parent, artist, and the VAPA Coordinator for the Riverside County Department of Education.

In Memorium: Rachel Jewell

The Jewell Family Last week, Rachel Jewell, a fellow mother with breast cancer, passed away. She was a shining light, a creative force, and a passionate supporter of her breast cancer sisters. Rachel contacted me through the Little Green Monster Project, and shared our resources with many of her friends. This is what she said:

“I am a mother of 2 spunky little girls ages 4 and 2, and am living with metastatic triple negative breast cancer. I am currently in a clinical trial because all the chemos, rounds of radiation, and a mastectomy has shown no progress. As a mother of young children, in the beginning of this journey I searched for any information I could find on how to talk and interact with my toddlers about my cancer and not a lot is out there but let’s be honest our kids are smart and I needed some guidance. I found some books which were good but it wasn’t until I opened the box from Little Green Monster that it hit me for the last 18 months this is what I had been looking for. The kit we received was fantastic. My girls love to be crafty and when I say love I mean at 7am all the art supplies are scattered around the kitchen. For them to be able to create their own green monster was so much fun for them to do. The book is honest yet whimsical with great illustrations my girls love. It has tips and vocabulary on talking with children about cancer and how to discuss their emotions and creativity. This kit is amazing and helps my husband and myself open up the communication of my cancer with our toddlers. Plus, there are online resources that I have found helpful too. I am forever thankful I have come across the Little Green Monster Project! You all are doing great things and helping families more then you will ever know.”

Rachel sent me pictures of her children’s play, including the one of her girls in their “rocket ship.” She inspired me to write the blog, Braving Big Questions. Along with the photos, she sent this note:

“Sorry this took so long to send. I haven’t gotten the best of news lately, it’s now not only in my lung but brain and I’ve been busy with appointments and trying to process it all and be a mom too.” Rachel was brave. Her smile, her generosity, her passion for being the best mother to her girls. She embodied love. During one check-in conversation, she told me:

“I’ve had a few bad days since I found out about the brain Mets… I’ve been doing this cancer stuff almost 2 years (in July) and never been told NED (“no evidence of disease”) and have always been on treatment and just bad news after bad news but the brain Mets has gotten to me and I’ve had a few really bad days since I found out Jan 21 but I just keep on keepin on! I have to. I have 2 amazing girls.”

Two weeks ago, I messaged Rachel again. She wrote:

“I’m in the hospital having brain surgery tomorrow. Cancer has gotten really bad. We are just all in shock. I’ll be in ICU for a while after tomorrow.”

Then, the following day, I asked her how she was feeling. She sent one word: “Rough.” And then she was gone.

I write this story in memory and honor of Rachel’s life. She is the reason that I work with families impacted by cancer. Together, we will read, feel, create and heal until the very end. I love you Rachel. I dedicate Ash and Feather to you.

Resources for Families on Grief and Loss

• Questions and Answers about Children’s Grief, Scholastic, 2011.

• You are the Best Medicine, by Julie Aigner Clark

• Whoever You Are, by Mem Fox

• Little Green Monster: Cancer Magic! by Sharon Frances (Chappell)

• The Goodbye Book, by Todd Parr

• The Purple Balloon, by Chris Raschka

• The Memory Box: A Book About Grief, by Joanna Rowland

• I am Love: A Book of Compassion, by Susan Verde

• You Nest Here With Me, by Jane Yolen and Heidi E. Y. Stemplee

Written by Sharon Frances, Executive Director of Well Beings Studio.

About Us: Well Beings Studio engages the arts to support emotional well-being of families impacted by cancer, other traumas and difficult times. We focus on understanding emotions; processing change, grief and loss; and utilizing reading, writing, and creative arts for well-being. We create arts-based resources and experiences to help families, particularly during cancer; as well as advocacy to dismantle stigmas about cancer, emotions, and reaching out for help. We are committed to inclusion, equity, and sharing multiple voices at the intersection of emotional well-being and mental health.

For more information, contact sharon@wellbeings.studio