Bibliosphere

 This is not an information post. This is a call to action. We are at the end of September. Hopefully you spent it raising awareness, raising funds, or at least educating yourself by reading the blog. But childhood cancer isn't over like its awareness month. Childhood cancer will hopefully end some day, or be as easy to treat as strep throat or an ear infection, but now is not that time.  Now is a time for action. Take action for the next 335 days by spreading awareness, sharing information, contacting senators, and raising money for families and research. Spend the next year taking action, so that someday we will not need a childhood cancer awareness month because childhood cancer will be a thing of the past.

 What does the word palliative mean to you? Palliative care is basically harm reduction. It's about coping, physically and mentally, with your condition. It aims to improve quality of life ( x ). It is for people, including children, with serious or life-threatening illnesses, cancer included. Palliative care is concurrent with other treatments ( x ). The palliative care team is made up of many different disciplines, including doctors, nurses, nutritionists, therapists, and more, but all aimed at helping someone . Many of us hear palliative care and think, oh, hospice. Which is partly true. Palliative care is often a part of hospice treatment, aiming to better the quality of life, including end of life. But, I've learned, palliative care is for all times in treatment, not just end of life ( x ). I'm learning so much in researching this post, mostly because I was in the group of palliative equals hospice. But it doesn't. So I hope that you all learned something too.

 In the battle against DIGP/DMG (Diffuse Midline Glioma) has pretty much one outcome: death. So when you hear of a new diagnosis, your stomach drops, because you know what's coming. Someday I have hope that it won't be this way. Someday I have hope that DIPG and related tumors won't be a death sentence for a 5 year old.  But that's not today, as much as we want it to be. So I'm sharing the fundraiser for a kid from my hometown, Ryland. You can buy a super cute shirt here: https://www.customink.com/fundraising/ryland-kautz. I'm planning on the long sleeve. I love the design and the proceeds go to a good cause.

 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...

 The long term goal for childhood cancer is not just remission, but long term survivorship. That's what we all want, that these kids live long, fulfilled lives without cancer, where they aren't burdened by treatment, relapses, and side effects. My brother is a long term survivor now, almost 16 years in remission. He has minimal effects, but there's so much we won't know until it happens. Especially knowing that 95% of childhood cancer survivors will experience a significant long term effect by age 45 ( x ). This is 475,000 people in the US (out of the estimated 500,000 childhood cancer survivors). Not only do we need better treatments for childhood cancer in terms of helping children achieve remission, but we need less toxic treatments. Treatments that cause less damage to surrounding tissue. Treatments that don't cause, by side effect or known effect, things like infertility, neuropathy, heart issues, secondary cancers, and more. We need better treatments and we ne...

 The Childhood Cancer STAR Act (Childhood Cancer Survivorship, Treatment, Access and Research), originally signed into law in 2018, is a law that authorizes funding for childhood cancer research ( x ). It authorized $30 million annually from 2019-2023, for childhood cancer support. Because of everything included, it is hailed as the most comprehensive childhood cancer legislature. From the Children's Cancer Cause ( x ): "This legislation expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors." The law was reauthorized in 2022 and signed into law in January 2023.  

Every year, thousands upon thousands of children are diagnosed with cancer. But how do parents and caregivers know? Well, the American Childhood Cancer Organization has created this graphic for you. The things they say to look for are: Pallor, bruising, or bleeding, general bone pain. Lumps or swelling, especially if painless and without fever or other signs of infection. Unexplained weight loss or fever, persistent cough or shortness of breath, sweating at night. Eye changes, white pupil, new-onset squint, visual loss, bruising or swelling around the eyes. Headaches, especially if unusually persistent or severe. Abdominal swelling. Vomiting, especially in the morning or worsening over days. Limb or bone pain, swelling without trauma or signs of infection.

 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...

 Many of us use social media, and Alex's Lemonade Stand has got us covered with some great social media material. You can check it out here . A couple of my favorites were:

    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...

We all know that September is Childhood Cancer Awareness Month, but other cancers are also recognized in September, all of which can effect children. They are: Blood Cancer Awareness Month (Violet - Hodgkin's Lymphoma, Orange - Leukemia, Lime Green - Lymphoma) Gynecological Cancers Month (Peach) Thyroid Cancer Awareness Month (Teal, Pink, Blue) I cannot count how many children I have met with a blood cancer. In fact, childhood leukemias alone account for a quarter of childhood cancer cases. So this September, take a moment to recognize the types of childhood cancer that also have their awareness months now.    

 One way to help during Childhood Cancer Awareness month (and year round) is to be an advocate. The Children's Cancer Cause has a suggested list of actions, and here are a few I want to share: They invite you to share your story . This links to a form. They also have a Legislative Action Center to read about current issues pending before Congress that impact cancer research, treatment, and survivorship. Yet another great resource in advocacy is their Childhood Cancer Advocacy Toolkit to learn about topics like writing a letter to the editor, effective virtual lobbying, and much more. Don't forget to be knowledgeable, with facts you can find in past posts or in their fact library . They challenge you to pick one fact to share on social media to help increase awareness with your network.  Advocacy takes many different forms. Try a few out and find what's right for you.

 I would be remiss if I didn't share my all time favorite go gold graphic. I found this years ago and have used it as my September Facebook cover photo most years since.

 As I read through this blog, I realized that I've never dedicated a post to my/my family's story. So I'll start at the beginning and walk you through my story with childhood cancer. First, I am the oldest and have two younger siblings, my brother and sister. My brother started having some health concerns with his sinuses in fall 2006, eventually being diagnosed with stage III alveolar rhabdomyosarcoma in his sinus. Luckily, the cancer had not spread. At the time, I was in 7th grade, old enough to be able to google more than my parents had told me. My brother underwent chemo at a semi-local hospital weekly for almost a year, as well as six weeks of proton beam therapy in Boston. He was kept entertained with Runescape and stuffed penguins, named after the towns were they were purchased (Boston was a favorite). After about a year of treatment, my brother was declared NED (no evidence of disease) and is currently a long term survivor, hitting 17 years this December. He is trul...