Bibliosphere

 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 .

 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) ...

 Last week, Utah had about 50% totality for a solar eclipse, the last one in the US until, wait for it, 2045. That's right folks, if you missed it on April 8, your next chance (unless you'd like to leave the country) is in 21 years. Anyway, I was sick unfortunately, so I did not get to gaze upon the eclipse directly (my solar glasses were at work). However, I still got to see the image of the eclipse, using a pinhole projector that I got at the library. My pinhole projector experiments were observed by a very confused gardener, armed with a weed wacker, nervous to hit me, or even disturb me. This is actually my second eclipse in a year. As some of you who have been reading for a while know, I ran an eclipse program in October for work. Never again will I have that opportunity, but I will have the opportunity to see another eclipse.

 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...

 So I work for Girl Scouts in the program department, and part of my job is (surprise, surprise) to run programs. I was ambitious and ran a combination overnight and day program for the eclipse at our camp, since it was at 87% totality. Which, for an annual eclipse, is pretty darn close to "totality." For those of you unaware, an annular eclipse is when the moon passes in front of the sun, but it's closer to the earth, so there's a "ring of fire" surrounding the moon, which is actually the sun. Armed with a solar filtered telescope and a whole box of eclipse glasses, we took in the eclipse. I've never seen an eclipse. I don't remember any growing up, so the first one I learned about was the 2017 eclipse, which I did not end up seeing, something I do regret. Seeing an eclipse is a pretty special experience. I knew about the pinhole projectors, about the leaves on trees, the idea of what would happen, but I was unprepared. As the moon moved across the ...

 A previous post discussed the Childhood Cancer STAR Act, but there's another important piece of legislation about childhood cancer research: Gabriella Miller Kids First Pediatric Research (Kids First). From the NIH ( x ): "The goal of the Gabriella Miller Kids First Pediatric Research Program (Kids First) is to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders. Children with birth defects have an increased risk of developing childhood cancer. This suggests there are shared genetic pathways underlying some types of childhood cancer and structural birth defects. Kids First is achieving this goal through two initiatives: 1) identifying children with childhood cancer and structural birth defects and their families for whole genome sequencing performed by the Kids First sequencing centers 2) developing the Gabriella Miller Kids First Data Resource, a la...

 Ok, so in addition to being childhood cancer awareness month, September is also blood cancer awareness month, as I mentioned a little while ago. I want to specifically spotlight blood cancer because it does account for such a high number of childhood cancer cases. Let's start with leukemia, which account for a quarter of childhood cancers ( x ). About 75% of childhood leukemias are ALL (acute lymphocytic leukemia), with the next most common being AML ( x ). Leukemia also accounts for 22.7% of childhood cancer deaths, the second most deadly form of cancer, following brain cancers. But what is leukemia? Leukemia is a cancer of the white blood cells, or cells that become white blood cells. Lymphoma is rarer in children than leukemia, accounting for only about 8% of childhood cancers. Of these, 5/8 are non-Hodgkins lymphoma and 3/8 are Hodgkins lymphoma ( x ). Lymphomas effect the lymph system, including the lymph nodes, tonsils, and spleen. Overall, 3.5% of blood cancer diagnoses are...

    Unfortunately, most childhood cancers truly have no known cause. While that has been highly studied, because wouldn't it be nice to prevent cancer, pediatric cancer causes haven't been found for most cancers. Childhood cancer isn't often caused by lifestyle or environmental factors like adult cancers can be. In fact, according to the World Health Organization, cancer prevention strategies in children should focus on preventing adult cancers in the future ( x ). Some causes have been identified, but many are genetic predispositions that can't be changed with current technology. It's estimated that 6-8% of childhood cancers are caused by inherited genetic variations, like variations on the RB1 gene in retinoblastoma ( x ). Other genetic syndromes have also been identified, like Li Fraumini syndrome, a mutation in the P53 gene. Down Syndrome (trisomy 21) is also associated with increased risk of leukemia. Environmental factors are hard to identify, which, according...

 Childhood cancer awareness is something we're all passionate about, and it doesn't stop on September 30. Check out these facts from the Children's Cancer Research Fund about childhood cancer: Cancer remains the most common cause of death by disease among children in the US - We still don't know how to prevent cancer, and since we can't entirely prevent it or cure it, childhood cancer remains the leading cause of disease by death in the US. 1 in 7 children diagnosed with cancer in the US will not survive, and for many that do, the battle is never over - The past few decades have seen huge improvements in survival rates, but they're not where we need them to be.  Childhood cancer is harder to research because there's so many variations - It's not one disease, it's hundreds, and each type and subtype is different enough to need different research and funding. New drugs for childhood cancer don't even reach pediatric research for an average of 6.5 ...

 July brings a new awareness month: Sarcoma and Bone Cancer. There's some overlap. A common bone cancer, osteosarcoma, is, as the name suggests, a sarcoma. First, let's talk about what a sarcoma is. A sarcoma is a cancerous tumor of the bone or soft tissues, which accounts for 1% of adult cancers, but 15% of childhood cancers ( x ). Soft tissues are found pretty much everywhere in the body, so sarcomas can occur pretty much anywhere in the body. Generally, they are divided into bone sarcomas and soft tissue sarcomas, with further divisions based on the specific cells. Common childhood sarcomas are rhabdomyosarcoma (what my brother had), osteosarcoma, and Ewing's sarcoma, but many types and variations exist and occur in children ( x , x ). According to the Sarcoma Alliance, children often respond to treatment for sarcomas better than adults. Past radiation treatment for cancer is a risk factor for sarcomas ( x ). Ewing's sarcoma and osteosarcoma are the two most common t...

 In a new, multi-institution collaboration, the first of it's kind open source analysis platform for childhood brain tumors has been created: Open Pediatric Brain Tumor Atlas (OpenPBTA). Thanks to the support of Alex's Lemonade Stand researchers , data from a pediatric brain tumor database that started in 2018, plus additional samples, is now open for scientists and researchers. We hope that this will usher in a new era of collaborative research for pediatric brain tumors like glioblastoma and DIPG. Read more about it here .

 One key part in the fight against childhood cancer is all of the new and innovative research that comes from our fundraising. Awareness is good, but we need the cure. Or cures, with over 100 types of childhood cancer. May is National Cancer Research Month, a time to learn about cancer research happening all over.  Research comes in many forms, from the gold standard of double blind clinical trials to basic research on a lab bench, cancer research comes in all stages. This month was started by the American Association for Cancer Research (AACR) and their official page can be found here . From that page, you can see research reports, more information for patients, and even a cancer prevention quiz. While much of the material online is adult focused, cancer research is the only way we will cure cancer.

After four years of engineering school and two years of grad school, I lost my love of learning. While I continued to learn things, I was primarily taking trainings at work to do so, and not necessarily retaining as much as I wanted. In the past couple of years, let's say since 2021 and moving into my home, I've become more able to actively learn and seek out new opportunities outside of work. I truly do love learning and want to know more about the world around them.  Most recently this has taken the form of Ted Talks and Duolingo, two free sources of knowledge, but also books, articles, and now a course from Coursera . For those of you unfamiliar, Coursera is a free, online learning site where colleges and universities run MOOCs, or Massive Online Open Courses. I took one on vaccines in college that was a lot of fun, and signed up for one in the fall but never actually did it. My current course is called Learning How to Learn and I wish I'd gone through it the summer befo...

Today (April 21) is Acute Myeloid Leukemia (AML) World Awareness Day. I want to spotlight what this cancer means for children, so here are some fast facts: AML is a cancer of the bone marrow that makes abnormal blood cells (myeloid cells can make multiple cell types). AML can be a secondary cancer, or a cancer that is caused by treatment of the first cancer. AML is most common in children under 2 or in teens. About 500 children are diagnosed with AML annually in the US. Signs of AML in children include odd fevers, bruising and bleeding, or feeling very tired. The Leukemia cells can spread beyond the blood, sometimes forming tumors such as a myeloid sarcoma. Factors that can change a prognosis include underlying conditions, age, and how the AML has spread. There is no standard staging for AML, but there are subtypes. Chemotherapy, radiation therapy, stem cell transplants (learn more about becoming a donor here ), and targeted therapies are used, as well as supportive care. Maintenance c...

I recently went back through my blog and tried to look at a video I'd posted several years ago on DIPG, because I remember it was a really great video. Unfortunately, like many of the photos I linked years ago, it has been taken down or the link is otherwise broken. So I have found a new video for you:   This video is by Nationwide Children's, which is a hospital in Ohio. It's titled "Inoperable Brain Tumors | Fast Tracking Treatments" and talks about some recent developments with DIPG. Namely that there's been a specific mutation identified in DIPG in a lot of cases, which is something that could influence treatments or even a cure in those cases.

When I was a senior in college, after part 1 of this blog, I took a class in medical physics. Now, the class was known as a blow off class, but I needed a second physics course for premed, because I tested out of physics 1. So off I went to this class with minimal requirements, a text book under 100 pages, and less than 5 assignments or exams. It totally was a blow off class, but also I got to do a really neat presentation as part of it, as an optional opportunity. Because I feel strongly that this is an important topic, I decided to go ahead and present to the class of 150 students, in the big physics lecture hall. The topic was types of radiation treatment, specifically the kind my little brother had as part of a clinical trial: proton beam therapy. Traditional radiation therapy uses x-rays (aka photons on the electromagnetic spectrum) and has been around a while. Proton radiation hasn't been around as long and hasn't been studied as broadly. Proton therapy isn't widely a...

 So, in my absence from this blog, something very exciting happened: a new pediatric-specific childhood cancer drug was approved! This happened in April 2020, so semi-recently. The drug is called selumetinib and is primarily for neurofibromatosis, but also used for thyroid cancer, Hodgkin lymphoma, neuroblastoma, acute myeloid leukemia (AML), epithelioid sarcoma, and tumor mutational burden (TMB)–high solid tumors. The article on an oncology website can be found here , summarizing recent developments in childhood cancer treatments. Read a summary about selumetinib here (Wikipedia).

TYWKIWDBI ("Tai-Wiki-Widbee"): How the American public views science : As reported in the StarTribune : The American public and U.S. scientists are light-years apart on science issues . And 98 percent of s...

“An Open Letter to Non-Vaxxers: Tonight, while enjoying a nice dinner, I got a call from the director of my son’s preschool. She was calling to tell me that they had made the decision to put my son in a different class because two children in the class he was supposed to be in have “opted out” of their vaccines. This may not sound like a big thing. He is still in the Tuesday-Thursday class, and since he doesn’t start school until next Tuesday, it’s not like he has to get readjusted to a whole new class. No harm, no foul. Actually, this is a big deal—a very big deal. You see, my son is immunocompromised. He has cancer. He was fully vaccinated and supporting the whole “herd immunity” thing before his cancer diagnosis, but that darn chemo wiped out his immunity to the communicable diseases against which he had already been vaccinated. So, parents who choose to not vaccinate because you feel it’s the “right choice for your family”, I would like to thank you. Thank you for adding yet ...

      What does survival really mean?  Most cancer statistics have a little disclaimer on the end, stating that they are the five-year survival statistics.  This is fine in many adults cancers, where the average age at diagnosis is in the upper 60s, and five years is longer than their average life expectancy.  But with childhood cancer, the average age is 10, meaning a child lives to be 15.  Is this really survival?  To most people, no, but this is the form the statistics take.  Five years.  That's it.        The overall childhood cancer survival rate is about 80%.  However, since these are averages over all types of childhood cancer (over 100 kinds), they don't actually represent what these cancers are like.  ALL, the most common childhood cancer, has a survival of 87%, and retinoblastoma has a survival of 99% (keep in mind that the treatment is removal of one or both eyes).  However, the survival rat...