Childhood Cancer Awareness Month: Final Week
As Childhood Cancer Awareness Month nears its end, we’re bringing you highlights from the final week of September 2020.
VIRTUAL CUREFEST 2020
The headliner awareness event took place this weekend - CureFest! This year’s event took the form of a new interactive virtual format, allowing families to participate from all around the world through informal neighborhood walks, inspiring videos, and candlelight vigils - including a virtual one:
If you weren’t able to follow along with CureFest updates over the weekend, scroll through the CureFest Facebook page for inspiring photos and videos from around the country.
COVID & CHILDHOOD CANCER
At Children’s Cancer Cause, we’ve been focusing our September awareness campaign on the challenges and hardships that COVID-19 has created for families dealing with a childhood cancer diagnosis -- delayed appointments, severe financial strain, and overwhelming anxiety, exacerbated by social isolation.
New commentary published in Pediatric Blood & Cancer sheds light on a different aspect of COVID’s impact on childhood cancer: delayed diagnoses. This piece raises the unsettling but critical question about how many childhood cancer diagnoses have been missed this year, due to missed or delayed primary care appointments because of the pandemic.
The researchers discovered this alarming data to back up these concerns: “Comparing the March‐to‐May periods in 2019 versus 2020, there was a 56% decline in cases. Assessing a longer time period pre‐COVID to further validate the findings confirmed a 59% decline in new cases comparing September 2019 to February 2020 (ie, a 6‐month span pre‐COVID) to March‐May 2020.” After states began to “reopen” in June, the researchers found a “gradual recovery” in new cases, but the researchers voiced fears about whether primary care doctors and pediatricians who are now dealing with a back-log of patient visits are able to allocate enough time per patient for the thorough evaluations required to detect potential diseases.
“To complicate matters, what challenges will oncology programs face as quarantine guidelines relax and patients present on a later timeline in the natural history of disease? The latter concern is of particular relevance to solid tumor patients for whom earlier diagnoses may impact disease stage and possibly outcomes. Adding to this stress, previously diagnosed and treated patients have likely had tumor surveillance scans delayed through this crisis, children with cancer predisposition syndromes have not undergone their routine surveillance, and survivors due for follow‐up testing and care may be falling behind in detection and management of late toxicities of therapy.
Well‐child care visits, at a minimum aligned with required vaccinations, should remain a priority both for primary care providers and families. The future trajectory of the COVID‐19 crisis remains uncertain, but the epidemiology of pediatric cancer diagnoses remains a certainty. While rare, these are diagnoses that cannot be missed. Existing literature regarding the mild COVID‐19 clinical course in children, with or without an oncologic diagnosis, coupled with the efficacy of PPE in preventing nosocomial spread should encourage families to seek care, and primary care providers to maintain standard practice hours particularly as we navigate an unpredictable future with the potential for a second wave of COVID‐19 cases. As pediatric oncology providers, we remain indebted to our primary care colleagues and the active vigilance they provide the community. We must stand united in the difficult decisions surrounding practice‐implementation we will undoubtedly face going forth.”
Read Full Commentary: Timely pediatric cancer diagnoses: An unexpected casualty of the COVID‐19 surge →
AWARENESS FEATURES:
We’ve been featuring stories of children and families all month and want to highlight a few of them here:
Ryan: Ryan is one of our 2020 College Scholars, and we're grateful that he shared this part of his story with us for Childhood Cancer Awareness Month. Watch Ryan’s inspirational video about the importance of surround yourself with loved ones:
Michele: Today - September 28th - is Michele's angelversary. This beautiful young woman passed away four years ago today after a relapse of her cancer, but Michele's bright light shines on in the lives of those she touched.
We thank Michele's mom Val for sharing her story and her enduring spirit with us, here and through Michele's Facebook page.
Please take a moment today to read about Michele's life and legacy.
Carter: On September 22nd, we celebrated five years of no cancer for Carter! He was diagnosed with Burkitt's Lymphoma, a rare, fast-growing type of cancer, at age nine.
We first heard from Carter's mom in April when she took part in our survey about COVID and childhood cancer. She shared how the isolation, fear, and extra cleaning brought back all of the memories of when Carter was diagnosed.
Despite the stress of it all, Carter and his family are doing well. Congrats to Carter on this milestone moment! Make a donation to Children's Cancer Cause in honor of five years cancer free for Carter.
LOOK AHEAD: RARE CANCER DAY ON WEDNESDAY
Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis.
This year’s specific theme is the Genomic Testing – helping cancer patients – especially rare cancer patients – learn about this option in their diagnosis and treatment plans.
Children’s Cancer Cause and the Rare Cancer Coalition invite you to spread the word about rare cancer and the emerging treatment tools currently available. Use the images and infographics available here to join in the day of awareness.
As part of the event, there will be a Virtual Congressional Briefing on Wednesday at 12 PM EST. The goal of this briefing is to highlight the gaps of the broken system but also for Congressman Butterfield to announce his intent of introducing the "Rare Cancer Awareness, Research and Treatment Act.” Register for the briefing here.