April 2024
DNA Sequencing Tumors | Parents Need MH Help | Guest Essay by a Nurse | The SDF Buddy Run! | Teens and Cancer | A Vaccine for Brain Cancer |
During the month of April, I’ve been tracking news about childhood cancer in search of stories that can benefit you: the ones battling childhood cancer and its aftermath with all your might. What I’ve found, and what I’ve curated for you in this newsletter, are reports of promise, progress and personal experiences - with a dash of fun on the side. Because here at Sam Day Foundation, our mission is to Dream Big, Laugh Often and Live Well.
Wishing you wellness, Kate
Genomic Sequencing Tumors for Precision Medicine
Did you know there is a free service available to genetically sequence children’s cancer tumors to determine which treatments will most effectively combat their unique tumor’s DNA? In April, I discovered a precision medicine program called the In:Formation Project after a second osteosarcoma tumor was found in my daughter’s lung. Our response was all too routine: head up to Seattle Children’s, surgically remove the tumor and head home a day later. (SCH has an amazing thoracic surgeon who has performed more than 1,000 such procedures.) After this second relapse, we now find ourselves in wild, wild country of non-standardized care where parents become the experts in searching for options.
That’s how I’ve stumbled onto the In:Formation Project, managed by Beat Childhood Cancer. It offers children with cancer to have complete genomic sequencing and analysis of their tumors at both diagnosis and all relapses. When children enroll on the BCC-BIO-001 Clinical Trial, BCC combines all clinical data, genomic data, outcome data, and lab research data into a database usable by all BCC collaborators to study and analyze this data together.
We jumped right on it and in a few weeks we hope to receive customized, precision medicine information and treatment recommendations to help our daughter.
And, if you needed one more reason to support SDF: The Precision Medicine Program was funded in part by the Sam Day Foundation, in conjunction with Beat Childhood Cancer. That’s where your money goes: toward the cure.
LINK to BCC’s website
Parents of Children With Cancer Need Mental Health Help
In this newsletter, I’ve written about a “fear monster” that took up residence in my head when my daughter was first diagnosed. But my quest for help against it has been fraught. I’m lucky to have the support of family, friends and community within the childhood cancer world. But none of that was enough when my daughter first relapsed 18 months after she rang the bell. I saw a counselor. That wasn’t enough. I meditated. That wasn’t enough. I saw my primary care physician who prescribed nutrition and exercise. That wasn’t enough. I saw her again. She prescribed medication. And for the first time, in nearly three years, I had measurable help in my fight against the fear monster. Now, when I feel a fear attack coming on, it’s like an invisible hand reaches into my head and gently pushes the monster back down. I still do the work with my nutrition, exercise, therapy and social support, but I feel safer now.
According to a study published in JAMA Network Open: I’m not alone. Turns out, parents of children with cancer seek mental health care more than parents of healthy kids by about 31%. And mothers do so more often than fathers by a margin of about 6 points. Overall, 74% of parents with kids fighting cancer experience anxiety and 46% experience depression.
“These findings underline the importance of multilevel interventions—such as providing mental health screening, counseling, timely support and ensuring comprehensive insurance coverage and paid medical leave—to better meet the mental health needs of these parents.”
We are not alone.
LINK to study
*Note: The Sam Day Foundation does not provide medical recommendations. If you are experiencing mental health problems, please consult a medical professional.
Kids Recovering From ALL Are Fatigued
New data from a study published in the journal Health and Quality of Life Outcomes suggests that children who have been treated for acute lymphoblastic leukemia (ALL) are likely to experience fatigue for at least 2 years after ending treatment.
“Fatigue levels were significant compared to both the healthy comparison children and the published normative data, signifying that parents of children treated for ALL find multiple aspects of fatigue to be impacting their child’s daily functioning,” the authors said.
For kids and parents eager to resume a normal pace of living, this data may help cope with depression over a reduced quality of life associated with fatigue. Healing takes time and studies like this remind us that it’s okay to take things slow after cancer treatment. For ALL kids…it could take 2 years.
LINK to study
Guest Essay: What I See From the Doorway
By Katie Allender, Pediatric Oncology Nurse
There’s always a bit of nerves when meeting someone for the first time regardless of the scenario. As I get ready to open the door to your room to meet you for the first time, I pause. I pause not knowing what is on the other side. I do know a cancer diagnosis sits on the other side of the door and each person is holding that weight very differently. A new face walks in, smiling warmly as I adjust my position and emotion to what is felt in the room, “Hi, I’m Katie, I’ll be your nurse today”. Hellos are exchanged, I engage with your child to begin to earn a relationship of trust, knowing and playfulness.
Each time I enter your hospital room I enter with ease and readiness to pivot with any newness that may be present; new emotions, more questions, chaos, tenderness, the list goes on.
What do I see from the doorway? I see you. I see you appearing to be calm; a sense of anxiety within. I see you asking all the questions and your mind being flooded to only need to ask the same question again because of the overwhelm. I see you doing your very best to care for everyone, forgetting about yourself. I see you holding onto…anything. I see you.
I often ask, how are you taking care of yourself? The reply is usually short as perhaps you are covering up that you aren’t. How can I with all of this going on, you may think. I am your nurse and my heart aches for you, swarming in emotions that I don’t fully understand. I can however empathize as I’ve met many many parents just like you. You are not alone.
Your child is taken care of by so many people, professionally and personally. Outside of the hospital, there is so much nurses don’t see. From the busy lives of running your other kids to their activities, keeping food on the table, holding down your job, struggling to have your kid take their meds, finding time to be with your other kids, your partner. You can keep the list going, as you know it best. The one holding the list - you - is lost in the heap of it all.
What I wish I saw from the doorway is holistic care for you too. What if your child’s diagnosis led to care that extended beyond their own treatment into full family care? It might mean that what I could see from the doorway is you sitting quietly listening to a mediation. Your partner could be healing with art because they have been given art supplies during your stay and have the opportunity to heal with an art therapist. Your other kids could be laughing in the room, clueless to what this all really means, as they all play games together. Could these wellness vignettes be the “in-between” moments? In between the meds, the tears, the pain, - all of it. What if the healing from this nightmare begins from all the moment we meet?
Cancer is horrific. As your nurse, I shed tears for you, have hope for you, get angry for you and have such a tender heart for you. My life is greatly impacted by meeting you, your child and your family. It is my greatest joy to walk alongside you on this path you never asked for. And as I walk alongside you, it’s time that your path comes with a bit of ease by having the healing tools to comfort yourself. There is the other side of this diagnosis, and I recognize that the other side is terrifying regardless of the outcome.
As I stand in your doorway I’m eager to help heal you as you are simply just trying to stay afloat. May I sit with you and offer a meditation and time to feel your breath a bit differently? Allowing yourself intentional stillness of your body, will still your mind, even if it’s for a second. Feeling the power of your breath as it glides in and out of your body is more healing to your mind and body than you know.
Allow yourself full permission to care for your full self, your mind, your body and soul. Without all of those being tended to, the hard moments are even more difficult to handle and you may miss the beautiful in between moments. Now, as you know how to soothe your nerves, utilize your breath and ask for moments of stillness and to be present in the moment in a different way, what I see from the doorway is you a bit lighter, a broader smile on your face and the energy in the room, well now, it just hits different in the best way.
As your nurse, I see you with full recognition that you are doing the best you know how to in this moment. Let me walk along your side differently, healing you too. Because on the other side life will never be the same, so let’s heal from the beginning and along the way.
I’m Katie, I’ll be your nurse today and today will feel a bit different.
Will you sit with me and breathe?
Katie Allender is a pediatric oncology nurse and holistic nurse coach. Katie will be offering a virtual breathwork medication class to our cancer patient/parent followers in June. Check out the May issue for the date and time of this self-care focused workshop. Follow Katie on Instagram at @katieallender.wellnesscoach
Announcement: The Sam Day Buddy Run is May 18th!
The Sam Day Buddy Run is a small group, high-impact charity run for select endurance runners. Runners are paired with “Buddies” who are either currently fighting cancer or who we have lost to cancer. The fundraising effort is successful because of these runners’ enthusiasm for this cause and compassion for what kids are going through.This event is a fantastic volunteer opportunity. The runners love to be encouraged along the course. You can bring a friend, some noisemakers, music, or even a bubble machine to add some life (though these are all optional additions to your time). Volunteers can also follow along with our Instagram Live Feed during the quiet moments at their post, and join us at the finish line when your shift is complete. The run begins at Doernbecher Children’s Hospital at 8:30 am on Saturday, May 18th. Finish line festivities will happen between 9:30am and 11:00 AM at Terra Linda Park in Washington County.
We love to have families at the finish line to cheer the runners on!
To donate or sign up to volunteer, click on the LINK.
Hits Different: Teenage Cancer Diagnosis
The day my daughter became a teenager, an IV drip full of chemo was coursing through her veins. She was bald, thin, ghostly pale and unable to walk without crutches. For her thirteenth birthday she wore a wig to feel pretty and struggled to keep her energy level up to hang out with her friends. I remember being armed with CME bags and tissues in case she got sick or sprang a nose bleed. Now, as we continue through her cancer journey, I am learning how the disease affects teens differently than young children. My daughter started out as a little girl fighting cancer, now she’s a high schooler. And it hits different because teenage years are a very special phase in human development.
I love this article because it’s written by three British kids who were all diagnosed with cancer as teenagers. They write candidly about growing up, going through the world-shaking changes that turn children into adults while making regular trips to hospital wards, and being treated with drugs that made their hair fall out.
LINK to story
A New Brain Cancer Vaccine
Here at Sam Day Foundation, we call ourselves “hope junkies.” Hope is what keeps us afloat when we feel otherwise lost at sea, fighting to keep our kids alive. But what keeps our hope afloat? The idea that one day, a breakthrough in pediatric cancer research will come available to permanently rid our child of cancer. (Just typing those last six words sent a wave of optimism through me.)
Lorna was fueled by hope that Sam would live long enough for a cure to come for him. I’m driven by the same hope for my daughter. And it’s why the Sam Day Foundation funds promising research - to fan the flames of hope that a cure will come for all kids with cancer.
This new research gives me so much hope: A team of scientists in the Brain Tumor Immunotherapy Program at University of Florida is optimizing mRNA vaccines to treat brain cancer by teaching the patient’s immune system to fight back and attack the cancer from within. By doing so, they’ve found that the immune system launches a near immediate and powerful response. Within six hours of receiving the vaccine, there is a significant increase in the amount of blood markers connected to immune activation. After developing an mRNA vaccine for glioma in children, they will expand to treat other kinds of pediatric brain cancers like medulloblastoma and potentially treat other kinds of cancers like skin cancer and bone cancer.
These mRNA-based vaccines are currently undergoing early-phase clinical trials.
LINK to article
Katie-thank you for being a peds oncology nurse. For all the nurses who stand by and care for the children and the families facing this arduous trek-we’re grateful ❤️
Joshua was diagnosed as a teen. Missing activities with schoolmates and family was hard. So much self awareness about loss of hair and physical challenges like walking with walker, crutches, cane, no assist.
Relapse and back to the cane now on a persistent basis. Feeling apprehensive as a teen about using the disability placard when he drives and looks for parking. All challenges he didn’t expect, but we’re proud of him for being a brave teen💛.