Bibliosphere

May is many things, including some important awareness days & months: Brain Cancer Awareness Month National Cancer Research Month Neurofibromatosis Month Oncology Nursing Month May 17: DIPG Awareness Day   I also want to shout out to the months I missed: March: Kidney Cancer Awareness Month April: National Adolescent and Young Adult Cancer Week (April 7-11, 2025) & April 21: Acute Myloid Leukemia (AML) Day   

 Well, y'all, here we are, February. In addition to being National Cancer Prevention Month, February has two important awareness days: World Cancer Day (Feb 4) and International Childhood Cancer Day (Feb 15). Two other related awareness days are also in February: National Donor Day (Feb 14) and Rare Disease Day (Feb 28).  This February 15, International Childhood Cancer Day, I invite you to participate in the ICCD campaign here: https://www.iccd.care/participate-share-your-actions . You are invited to take action, whether you choose to share on social media, volunteer, or advocate. As a reminder, if you're local to the Wasatch, we have a hockey game benefiting CureSearch coming up. Check it out here: https://fevo-enterprise.com/event/CureSearchforChildrensCancer-2025 . Can't donate? Check out CureSearch's website and you can donate directly.

 From ACCO, did you know, 1 in 6 children diagnosed with cancer won't survive more than 5 years after diagnosis. When I was younger, it was 1 in 5, so at least we're going in the right direction. But 1 in 6 is still far too many.

The Sarcoma Alliance has shared a number of childhood cancer sarcoma facts this September already. Here are a couple that I think are especially worth noting.  

 After a 9 year hiatus, I am pleased to announce that the Rhabdo Warriors are back at it for the 2024 Salt Lake CureSearch Walk. I am excited to slowly get back into the community, in ways that make sense for me. While volunteering for other CureSearch programs didn't work out, I am excited for the walk and for making my team. I've even roped in a friend! If you would like to donate to my walk profile, click here . Any donation is helpful! Together, we can end childhood cancer.

 July is Sarcoma and Bone Cncer Awareness Month. Sarcomas account for cancers in a variety of locations and tissues, and are divided into two categories: sarcomas in the bone and sarcomas in soft tissues. From the Sarcoma Alliance : "Sarcomas are cancers that develop from bones or soft tissues, such as fat, muscles, nerves, and more. Because bone and soft tissues can be found nearly everywhere in the body, a sarcoma can start in any part of the body." Sarcomas can originate anywhere in the body, with 60% beginning in limbs, 30% in the abdomen, and only 10% in the head or neck. Sarcomas are rare in adults, accounting for 1% of cancers, but are the cause of 15% of childhood cancers. There are also ways to get involved! From the Sarcoma Foundation of America, check their list here , or see some ideas below: Wear yellow on July 12 Order a sarcoma yard sign Check out their social media toolkit

 Exciting news posted by St Baldrick's: the long-term study for the biology- and response-based algorithm on the Children's Oncology Group study ANBL0531 for intermediate risk neuroblastoma is complete and the results have been officially published! In the long-term study, a ten year period, the overall survival rate was 95%, with an event-free survival rate of 82%, which is fantastic! Read the summary here .

 June is Cancer Survivor Month! We are so proud of all of our survivors, and are so glad that they get to grow older and have the experiences of adulthood. My brother is a 17 year survivor of rhabdomyosarcoma. My dad is actually also a cancer survivor of around 25 years, so we have two long term survivors in my immediate family. I am grateful that both of them have made it to this stage. This month, we honor the survivors as we keep all children fighting cancer in our thoughts, year round. Survivors represent 80% of childhood cancer patients overall, though as we know this is only the 5 year survival rate. Cancer survivors, especially childhood cancer survivors who receive harsh chemo and radiation during critical developmental periods, face unique challenges, physically, mentally, and socially. So this June, check in with the cancer survivors in your life.

May might be over, but brain tumors affect children and their families year round. Keep the 83 kids that will be diagnosed with a brain tumor in the US this week in your thoughts.  

 A new-ish awareness day is DIPG Awareness Day, held on May 17. The awareness day dates to 2016, when the then-governor of Maryland declared the day for the first time, on the anniversary of the passing of DIPG warrior Michael Mosier. Currently 30 states and the US Senate recognize DIPG Awareness Day ( x ). Here are some fast facts about DIPG: DIPG is a rare, aggressive cancer of the brainstem. DIPG is the most common cancer of the brainstem in children and the leading cause of brain cancer deaths in children. DIPG has a median survival of 11 months. The overall survival rate is less than 1%, with the 5 year survival rate being 2%. There are a few long term survivors of DIPG, with some common characteristics, but they often face stigma from multiple communities. The most common ages for diagnosis with DIPG is 4-11 years old with the median age being 6-7 years old. Families can find resources and support here . It is time to #defeatDIPG. Sources: x , x , x  

 May is Brain Tumor Awareness Month, also known as "Grey May" according to the National Brain Tumor Society. I used to think it was only brain cancer that was represented by May, but it's actually all brain tumors, over 70% of which are benign ( x ). It is thought that over 1 million Americans live with a primary brain tumor, including over 13,000 children. Indeed, it is the most common solid tumor cancer in children and accounting for a quarter of childhood cancer diagnoses ( x ). I actually had a bit of a scare with a (possible) brain tumor earlier this year. I've had a hormone imbalance for years, and we'd always assumed it was due to some medication I take. However, after finally starting treatment, the imbalance didn't resolve, and my doctors agreed that I should be tested for a pituitary tumor, a usually benign tumor of the pituitary glad that may be present in up to 10% of people, usually without symptoms ( x ). The scan was (thankfully) negative and we...

 May is here. It's one of my favorite months. Warm, sunny, blooming flowers, leafy trees, flowing streams, perfect for being outdoors in Utah. May is a beautiful month. May is Brain Cancer Awareness month, as well as National Cancer Research month, Neurofibromatosis month, and Oncology Nursing month. Clearly a lot is going on. And it's all worth learning about. So stay tuned for more posts this month about at least some of these topics.

 Great news! A new childhood cancer treatment has been approved by the FDA! From the pharmeceutical company's website : "Day One Biopharmaceuticals, Inc. (Nasdaq: DAWN) (“Day One” or the “Company”), a commercial-stage biopharmaceutical company dedicated to developing and commercializing targeted therapies for people of all ages with life-threatening diseases, today announced that the U.S. Food and Drug Administration (FDA) has approved OJEMDA (tovorafenib), a type II RAF inhibitor, for the treatment of patients 6 months of age and older with relapsed or refractory pLGG harboring a BRAF fusion or rearrangement, or BRAF V600 mutation. This indication is approved under accelerated approval based on response rate and duration of response. With the approval, Day One received a rare pediatric disease priority review voucher from the FDA."  This treatment is specifically for low-grade gliomas (the most common brain cancer in children, affecting 1100 children per year) ...

 Every year, teens and young adults are recognized as cancer warriors and survivors for National Adolescent and Young Adult (AYA) Cancer Week. This year, it falls from April 1 to April 5. From the Children's Cancer Cause' s website, the purpose is: "This annual awareness week is an opportunity to shine a light on the unique challenges that teen and young adult cancer patients and survivors face." AYA week encompasses young people ages 15 to 39. While this is an uncommon age range for cancer, it's not as uncommon as you might think. Some 89,000 young people are diagnosed with cancer in the US annually, and some cancers are even most common in young adults and adolescents ( x ). These include thyroid cancer, lymphomas, and primary bone cancer. AYA cancer survivors face unique challenges, from navigating more health problems than others their age due to long term side effects to peers not being able to understand their experience. Through CCC, one survivor said: “I...

 Did you know that March is Kidney Cancer Awareness Month? Kidney cancer is a type of cancer that effects children, usually as a Wilm's tumor (about 90% of childhood kidney cancers and 6-7% of all childhood cancers), but other types are also possible. A new fact that I learned this year is that 5-10% of childhood Wilm's tumors effect both kidneys or there are multiple tumors in a kidney ( x ). I didn't know that was even something that happened, let alone that frequently. I also learned that about 10% of Wilm's tumors are genetic, which also seems like a lot (same link). If you're looking to spread awareness, check out the Kidney Cancer Association's website . You can even order a free orange ribbon to show your support.

 I have some wonderful news from France that my mom shared with me on Valentine's Day. A child, a 13 year old, from Belgium has been cured of DIPG with an experimental drug ( x ). It seemed to good to be true, honestly. How often do you hear that a tumor with a 0% survival rate just... disappeared? And other children in the cohort surviving beyond the normal survival time? I went a little deeper. The medication, everolimus , has been studied a few times for DIPG. It's a repurposed drug, currently used for a variety of types of tumors and more. According to this research on genetically targeted treatments for DIPG, the average survival time increased from 14 months without the adjuvent to 20 months with the additional treatment. However, this is ultimately a very early study on the drug, not a study that will truly create a treatment plan to help these kids survive. In another phase I study , you can see results with two biologic treatments, the same drug above combined with an...

 While a lot of this blog focuses on days and awareness of what's happening with childhood cancer in the US, the reality is that childhood cancer has a global impact. This year International Childhood Cancer Day falls on February 15. From the organizers , "International Childhood Cancer Day is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families." Did you know that over 400,000 children develop cancer annually, but only half are ever diagnosed. There are huge gaps in childhood cancer care between countries, where 70% of children in some low and middle income countries won't survive their cancer, but only 20% of those in high income countries won't survive. Still far too high, but think about that difference for a moment. The International Childhood Cancer Day organizers have provided a toolkit to learn more about how you can help here .

 February 14, in addition to being the all-important Valentine's Day, is also National Donor Day! Whether you donate bone marrow, blood, or a kidney (and everything in between), today is the day for you! So here are some ways to celebrate your love of donors: Sign up to give blood! Check out this list by zip code. Make a donation to a local blood bank, the bone marrow registry, or a tissue bank. Thank a friend or family member who donates. Sign up to be a part of the bone marrow registry here . Make sure that your driver's license says that you're an organ donor and make your wishes known to friends and family. Ask your workplace, community organization, school, or church to host a blood drive.

 Hello everyone! Guess what? My fundraiser is still happening and there's plenty of time to make your donation!  Did you know that St Baldrick's is a top funder of childhood cancer research? I donated over a foot of hair twice and shaved my head once, all to help kids fight cancer. There's nowhere for me to shave or volunteer in Utah, so I started my own fundraiser in parallel with the February Facebook fundraiser happening nationwide! I'm walking at least 25 miles in February, and I hope that you will join me in donating to St Baldrick's to raise funds for childhood cancer research. You can donate here ( https://www.stbaldricks.org/fundraisers/mypage/4993/2024 ). Thank you in advance for helping save lives!

 Did you know that February 4 is World Cancer Day? The theme from 2022-2024 is Close the Care Gap, and it aims to close gaps in cancer treatment. From their website : The last year of our campaign is all about bringing attention to a higher level—literally. We will raise our voices to engage our leaders. Now that we have knowledge and a united community by our side, we are ready to shake the very foundations of injustice—to become lifelong advocates fully equipped to push for lasting change.   Together, we will make sure our leaders know that we demand a commitment to prioritising cancer, to creating innovative strategies designed to confront inequity and to investing our resources to achieve a just and cancer-free world. We will call on leaders to eliminate health inequities by addressing their root causes, ensuring that everyo...