Bibliosphere

 Today is December 31, 2023. As some might say, 123123. The New Year has transformed over the years from a big party to a personal celebration. I might toast the new year now, but with sparkling cider, and usually around 10 pm. By midnight I'm snuggled into bed, ringing in the new year with a solid night's rest. Growing up, my family always had new year's eve parties. We'd drink and play games and stay up late into the night (or early the next morning), from the time I was probably 11 or 12. We'd watch the ball drop and toast with sparking cider or, later, more adult beverages. Every year brought an evening with friends as we started the new year at midnight. Now New Year's promises a more relaxed, less raucous celebration. I often think about resolutions, eat some tasty food, and toast to myself. The evening is quiet, relaxed.  One isn't inherently better than the other, just different. My new New Year's Eve is much more in line with who I am now, and e...

 I think that the holidays are special to be because of our family traditions more than anything. I'm agnostic, so I don't believe in the religious aspects of the holiday, just the cultural ones. I also love the symbols, but more than anything I want the familiar family activities. I didn't get them last year as much as I wanted, as I was at the beginning of recovery from a nasty respiratory infection and wasn't feeling well. But this year they're there.  So, my favorite holiday traditions, in no particular order, are: Baking cookies, whether it's gingerbread or sugar, and especially ones you cut out and decorate. Our Christmas eve snack fest and bûche de Noël (had to google how to get the accent marks because Blogger was not playing nice, even on the French keyboard). The tradition of handmade PJ pants for a Christmas eve gift (not every year, but most). Cinnamon rolls and egg bake for Christmas morning breakfast. Amy Grant Christmas CDs (don't judge). Play...

 Wishing you a merry and bright Christmas day!

This year I read many books, including many memoirs. I read three memoirs that were about self help - one general and two about specific kinds of self help. The books were Help Me by Marianne Power, 10% Happier by Dan Harris, and The Gratitude Diaries by Janice Kaplan. Each was written by a journalist, each about the same length (I will admit that 10% Happier was an audiobook, but equivalent length).  I like reading self-help books. There's no end to what we can learn about ourselves, and looking at it through others' eyes is always worthwhile, even if we eventually disregard their advice. I read other self-help books this year, but these were the three that were styled as memoirs, with more personal connection. Overall, The Gratitude Diaries was my favorite, easily. I've been practicing gratitude for a while, but it was really good for me to see the true impact of the practice. Help Me was arguably the one I looked forward to the most, and it was even one that I asked the ...

 One nice thing about my job (or actually a couple of nice things together) is that I have a ton of PTO (25 days a year, not including sick time, because I've been there over 5 years) and while I'm not able to take it as frequently as I'd like, I am able to take off the entire week before Christmas, in addition to getting the week between Christmas and New Year's off as a holiday week. I use this time to go to Wisconsin, spend time with my family, meet up with friends, etc. I am grateful to have a job where I can do this because I don't get to see my family a whole lot, and I've come to really enjoy my time with them. Sometimes I do feel a little left out - my siblings did a whole lot of growing up and bonding with my parents that I just didn't have growing up, so they have a different vibe with the four of them vs the five of us. But I'm working on developing those relationships, and so far it's slow going, but a start. I wrapped up work this year w...

 This holiday season, I want to extend a special happy holidays to families who are new to childhood cancer, families undergoing treatment, families who are new to remission, and families who are bereaved. These holidays are not like other holidays. There is a before, a during, and an after. Before diagnosis, during treatment, after treatment ends, whatever the outcome. The holidays before are light. The holidays during and after are wondering if this is the last holiday for all of you. When you reach the after, if you've reached the remission stage, for a while it feels like it could all come back. The holidays may go back after a while, more like the before, but it always is something that happened, something that could come back. So wishing all those in new stages of the childhood cancer journey a happy holidays. May your December end smoothly, safely, and be full of light.

 I'm getting ready for my travels, which is how I spend my holidays every year (except 2020, but that's a longer story). The past two times I've visited my parents I've been sick: last Christmas I caught a respiratory infection right before traveling and in August I caught COVID on the plane on my way to Wisconsin. So, and hopefully this isn't jinxing it, but I'm hoping I am well and get to enjoy my visit without snot and coughing and all the other delightful aspects of respiratory-related illnesses. Overall the holidays are a good time of year for me, although work did not really wind down like it has in years past. Busy, busy, right until the last day. But it's time to relax, to spend time with family, to enjoy the winter holidays. Wishing you and yours a lovely and bright holiday season, from me and Hippie!

 I've been busy reading this fall! I've read over 50 books in 2023, between audio and print, and I have to say that this is the most I've read since... middle school? High school? I've spent so many hours curled up with a good book and it's been lovely. So here are my books since the last post: Burnout: The Secret to Unlocking the Stress Cycle by Drs. Amelia Nagoski, Emily Nagoski  The Things We Make by Bill Hammock (audiobook) The Gratitude Diaries by Janice Kaplan (got its very own post) Swallowed Light by Michael Wasson  Art for Self-Care: Create Powerful, Healing Art by Listening to Your Inner Voice by Jessica Swift  Stressilient: How to Beat Stress and Build Resilience by Sam Akbar  10% Happier by Dan Harris (audiobook) Against Technoableism: Rethinking Who Needs Improvement by Ashley Shew  How to succeed with your Home Owners Association : the complete HOA guide for owners, boards, and managers by Linda Perret (read in two sittings) Oak Flat by Lauren...

 Great news from New York state! From ACCO, "Assemblymember Linda B. Rosenthal (D/WF-Manhattan) announced [on October 27, 2023] that her legislation (A1302/S1898) to increase funding to the state’s Cure Childhood Cancer research fund has been signed into law. The law will create a check-off box on state income tax forms through which taxpayers who wish to can easily contribute. The law was sponsored in the state Senate by Senator Toby Ann Stavisky." While much funding for childhood cancer research comes from the federal government, states are also able to offer grants and other funding. I'm unsure on Utah's grant availability, but I do know that our state heavily funds our health care system's cancer center, which is state of the art.  I encourage you to check out the full article here .

 For those of you unaware (as I was until November 2), November is National Clean Your House Month, going with NaNoWriMo (National Novel Writer's Month). While I'm not much for novel writing, I did feel like cleaning was a good thing, as I am not a big cleaner and projects tend to pile up. So around November 3, I decided to participate, and started working on a list. In the end, I made a list of 34 household tasks that don't get done regularly (or I've never done them in the three years I've been here). Some highlights included: Putting away all the items in my two junk boxes (I found an absurd amount of spare glasses) Vacuuming so so many things Cleaning my washing machine, coffee pot, and oven Cleaning the faucets, tub, bathroom and pantry floors, and and around the litter box Organizing under the bathroom sink, including throwing out old nail polish (don't worry, I got the under the kitchen sink when I replaced the disposal) Paint touch ups to cover up an ass...

 If April showers bring May flowers, what does December bring? December, the last month of the year, is both slow and a blur. At work, things tend to wind down, except for preparing for January, which brings cookie season. We tend to work less hours all the same, but I feel like it will be different this year with some of the drama happening. There's truly never a dull moment when working with a combination of volunteers and children at an organization with a somewhat complex structure. In my personal life, December passes quickly. Holiday activities give way to holiday travel, a visit to Wisconsin that always goes by faster than I think it will. This year I'm traveling for 11 days, which is longer than I have since college, when I'd spend the entire three week break at my parent's house. I'm looking forward to going back, although not the actual travel process. December brings the winter as well, with snow already started in my area. While I know in my heart that t...

For those of you who are unfamiliar, the American Childhood Cancer Organization has an awareness tree every year. This year you can purchase a ribbon (virtual and one will be mailed to you) until December 11. Check it out here . When I moved out, my mom gave me one of my brother's ribbons and I put it out every Christmas. I don't know if she still purchases one, but it's a really cool thing to do. I'll have to remember to check out the finished virtual tree.

 I finished this book in early November and I found it quite inspiring. I read a lot of self help books, and some are better than others. This one is definitely in the better category. I thought it was a really great look at gratitude and practicing it. There were quite a few things I really liked. For one, it wasn't just memoir style and it wasn't just research style, there were a mix of interviews with experts and personal experiences. I also liked that it talked about putting gratitude actually into practice and how it effected those around her. It did inspire me to set an additional time for reflection in my gratitude app, as well as to try my best to find positives, and to mention them to others. It is a challenge to balance positive vibes with toxic positivity, but I'm sure I'll find the balance as time goes on. It has definitely gotten easier to pick out things during the day of, oh, I'm grateful for this, that feeling, however subtle, is gratitude. I'm e...

 November is Native American Heritage Month and it's important to take time to learn, amidst an long history of misinformation and discrimination. I know that what I grew up learning is no longer something I would be comfortable teaching to children. At work, we're doing a 21-day Indigenous Anti-Racism Challenge. While we can go back and forth about whether we need to have challenges to motivate people towards antiracism goals, I think it's important nonetheless that they exist. I know that they have pushed many people towards learning and knowledge that they wouldn't otherwise have had. So I wanted to share some resources that I've been exposed to this month. First, the Smithsonian's Museum of the American Indian has this fantastic virtual exhibit to see all sorts of interesting artifacts and information. You can find it here . I also very much enjoyed this podcast from Teaching While White, a podcast dedicated to informing educators. I've listened to so...

 In addition to being Palliative Care/Hospice month and National Marrow Awareness month, it's also Family Caregiver's Month! Behind every childhood cancer fighter is a family caring for them. This movement is spearheaded by the Caregiver Action Network. You can find this year's information here , including the year's hashtag of #caregiversconnect. According to them, celebrating Family Caregivers during National Family Caregivers Month enables all of us to: Raise awareness of family caregiver issues Celebrate the efforts of family caregivers Educate family caregivers about self-identification Increase support for family caregivers Reduce feelings of isolation November is Family Caregiver's Month and the color is plum.

 I'm (slowly) working my way through UC Davis' Anti-racism challenge. Because anti-racism didn't end in 2020. It's been really interesting to read and listen to their resources. I'll admit I'm not actually doing it in 21 days, I've been working on this since September. But so far so good. I'd recommend this if you're interested in learning more about racism and anti-racism, including a ton about intersectionality. You can find the challenge here . I challenge you to learn at least one new thing about anti-racism, even if you don't do the whole challenge.

 I recently received an email from Be the Match (bone marrow registry). I have been on the registry for 11 years! That is over a third of my life, pretty much since I turned 18 minus the amount of time to process my sample. Yeah, that's what I did as a freshman in college. I've posted about the bone marrow registry before, but I'll say it again because more and more people need bone marrow every day: sign up to be a donor! It's gotten easier, it's free, and you would save a life if you get a match and donate. Visit Be the Match here if you're in the US, or research your own country's bone marrow registry. You can also learn about the medical requirements here . Reading this, I actually learned that I only have a few more years before I reach the end of the ideal age range. Can't donate marrow or stem cells? Give a monetary gift here instead.  Coincidentally, November is also National Marrow Awareness Month. What a great way to show your support by join...

 One of the things I think about a lot is whether I can claim something as part of my story. An example is childhood cancer. I stopped posting and raising awareness on this blog in college, but was active in the tumblr community for a while after that. I really stopped when I became friends with a survivor who didn't want to talk about it, and I became embarrassed to be putting up more of a show than they were. That it wasn't enough of my story to justify my activism because I was "just" a sibling, not a survivor. That it wasn't even that bad, because my brother is a long term survivor with minimal side effects. Cancer is not even a topic that we talk about regularly in my family, it's been so long. But I've come to the conclusion that I can't let others get in the way of claiming my story. I am a sibling to a childhood cancer survivor. I come from a community of cancer fighters. I have a right to be vocal. I have a right to speak out, to affect change...

 Alrighty y'all, here's what I did for new things between September 18 and October 31: Made bolani (Afghan stuffed flatbread) Got new glasses in a style I haven't had before Tried mangonada (Hispanic mango beverage with chilis) Tried eskiqute (Mexican street corn, aka elote, but in a cup) Made roasted garlic soup with buckwheat noodles (also the first time cooking with buckwheat) Shaped fresh pasta Stamped a moon cake Cooked a full fresh pumpkin in two different meals Made arepas (also first time eating an arepa) Experienced an annular solar eclipse (!!) Managed a non-summer camp event with over 100 people (my largest event in charge yet) Tried vegan sausage (yes, I'd never had that before and I eat a lot of vegan food) Made khobez bread (middle eastern flatbread, which I looked up and khobez is just bread in Arabic, but this is a round flatbread) Tried za'tar spice blend Read (or tried to read) a satire Cooked with miso (I've had it, just never cooked with it) ...

 I've been enjoying many new recipes this summer and fall, so here are my latest cooking tips: As much as I love it, there is such a thing as too much olive oil in cooking. You will know when it escapes the pan. Don't add the fresh garlic at the beginning when sauteing. Instead, add it in the last minute for the most fragrance and taste. Experimenting with recipes and putting your own twist on them is tons of fun! Once you have your cooking skills and knowledge, push the envelope of what you can create. Spices are worth the investment. Seriously. It's ok to get out of your comfort zone and try something new. It doesn't have to turn out perfect either. It's even ok if you didn't like it. Garlic powder is better than garlic salt. Fresh minced garlic is even better than garlic powder, but don't feel bad if you're not up to mincing garlic with everything you make. I sure am not. Canned chickpeas are delicious and super versatile. Eat them raw, roasted, saute...

 This blog that I found on Tumblr did a daily fact for September this year (find them here ) and I wanted to share with you their last one: "Everyday is Childhood Cancer Awareness Month." That's what we like to hear. Go Gold, 365 days a year.

Happy Halloween friends! I'm celebrating this year with carved pumpkins, handing out candy, and dressing up as Rosie the Riveter. My friend is coming over for a while, and I'll get to see the kids in their costumes.  Hippie will also be dressing up. He will be a demon again, because that costume is far too cute to use just once. I do believe that next year we will have to reuse the mermaid costume. Here he is last year on Halloween:

 While I've always loved cooking and baking, and have often experimented with recipes and new foods, I've become especially interested in the last year or so, especially with plant based and healthier foods. What truly spurred the change was yet another blood test that came back poorly, and a letter from my NP telling me again the steps that I needed to take and had ignored for years. I've come to an understanding though. To cook for yourself as a single person, to try new recipes, find healthy foods, and push the boundaries of what you eat, that is a form of self love. To nourish your body and soul is truly an act of love. We recognize this when we cook for others, baking cookies or bringing a chili pot in times of grief, but why don't recognize cooking for yourself as it is? I will stand on this hill forever, but cooking for yourself is a wonderful act of self love.

 This is a hard post to write, not just because reflecting on the sad things in life can be difficult, but also because the sorrow that has been felt over what I am going to share is so deep and wide. As I mentioned in September, my brother is a long term survivor, with minimal side effects. He is a healthy young adult, a little shy, but as "normal" as anyone else. But when he was diagnosed, there were other children who were diagnosed with rhabdo, around the same time or within a few months to a year. I watched my brother get better, with treatments ending and check ups getting more and more spread out. The other families though? They did not get this. They may have gotten a reprieve, a remission, but it was always followed with a relapse. Like so many families, they did not get to long term survivor. Because childhood cancer is a monster, and, unfortunately, is still a killer. We need an end to this outcome. The death of a child from disease outside of the most extreme of c...

 My last book post was in July, and I've read quite a lot since then. I track my books in StoryGraph, a website that's an alternative to Good Reads (honestly I think it's better). Here's what I read between late July and now: #NotYourPrincess: Voices of Native American Women, by Lisa Charleyboy, Mary Beth Leatherdale  Anxiety at Work: 8 Strategies to Help Teams Build Resilience, Handle Uncertainty, and Get Stuff Done by Chester Elton, Adrian Gostick (audiobook) Office Zen: 101 Ways to Make Your Work Space Calm, Happy, and Productive by Emma Silverman Talking to Strangers by Malcolm Gladwell Rising Strong as a Spiritual Practice by Brené Brown (audiobook) How to Deal with Angry People by Dr Ryan Martin How to be an Inclusive Leader by Jennifer Brown I'm Glad My Mom Died by Jeanette McCurdy (audiobook) Simple Giving by Jennifer Iacovelli Astrophysics for People in a Hurry by Neil deGrasse Tyson (audiobook) White Women: Everything You Already Know About Your Own Racism...

 I post about food because I do love food. When it comes to describe my diet, my doctor would say it's the Mediterranean diet, but I cannot be contained with Mediterranean flavors only. My diet isn't vegan or vegetarian or pescetarian or low fat or whatever else. So the word that fits, a word that I do not like, is "flexitarian," defined as eating in a variety of different diets and styles. I want to say that this is what everyone does, but that's not true, because many people eat one style of food, one way of eating, and that's it. But I would prefer to dabble. I make myself a middle eastern flatbread one night, spiced with za'tar, and the next I make a root vegetable hash, full of plants native to the Americas.  One of the benefits of being "flexitarian" is that nothing is off limits. I can make a vegan dish, I can make a dish with pork, and everything in between. Part of the reason this works is because I don't have other dietary restricti...

 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 ...

 My work has started doing an annual staff fun day where we'll get together for a day at the end of our year (September) and do something fun instead of work. This year, I'm delighted to report, we went to a culinary school and shaped pasta! As an avid cook and wannabe home chef, this was a perfect day for me, tinged with issues only due to crabby coworkers. But a great day nonetheless. I spent many a moment trying to just soak it in. It started with a tutorial on making the pasta dough, and we got a whole sheet of the recipes we would be making. Eggs, flour, and a little salt mixed together to form a dough. Ours was already rested and rolled, but I still got to cut a sample into spaghetti. We watch the roller go, the got to shape our own. We shaped two varieties: a tube shaped one with ridges that I forgot the name of and orichette, a pasta I was familiar with. We even got to keep the tools used to make them!  Then we learned about three sauces. We didn't actually make the...

As I found out researching my Awareness Days and Months post and page, October 14 is World Hospice and Palliative Care Day this year. It has been celebrated for 17 year and aims to celebrate and support hospice and palliative care around the world ( x ). This year's theme is Compassionate Communities: Together for Palliative Care, which is described by the Worldwide Hospice Palliative Care Alliance as Compassionate communities care for people, assist people to live in the place they call home, connect people to services, and raise awareness about end-of-life issues. We will engage governments and key stakeholders in a health promotion approach to palliative care, aiming to support solidarity among community members throughout their life course up to and at the end of life. In recent years, hundreds of compassionate communities have been developed all around the world. We believe that palliative care working alongside compassionate communities multiplies the ability to respo...

 So recently I got a workbook that aims to increase self compassion. Self compassion is about the way your treat yourself in the face of failure, stress, or in times of difficulty ( x ). It is about treating yourself with kindness, humanity, and mindfulness. I wanted to learn more and work on this with myself because of a book I read on intuitive eating. You can take a short quiz here to see where you fall in self compassion.

 This September, while doing something I can't quite remember, I was hit with inspiration: I should make my next goal to try new things. I do goals of the month, and generally some sort of new year's resolution, so I had options. At first I was thinking, "Try one new thing per week," but they I settled on my current goal, "Try as many new things as possible." I'll be honest, I started early. I consider my first "new thing" was an Afghan cooking class at the local library. Yes, our library is that cool. We made bolani, a stuffed flatbread that is fried, and I got to stuff my own with fresh cilantro, shredded potato, and green onion, seasoned with salt, pepper, chilis, and coriander. That was the beginning of this challenge. I plan to continue until the end of the month, and if I like it, I'll make it my New Year's resolution for 2024. Wish me luck as I try new things, and I'll check back in in November with a list of everything that ...

 Now we've made it through September and I'll be getting back to more of a mix of blog post topics. I can't believe I made it through the whole month with three posts a week of only childhood cancer topics. I'd like to start October with a life update from me. I continue to work for Girl Scouts, although it's been a stressful month with people leaving, working overnight at camp, and trying to take on more and more. I am also still on the HOA board for my condo, which is an adventure in and of itself. I went on a visit to my parents and I caught COVID either on the plane getting there (despite a KN95 mask) or shortly after I arrived. I was sick for most of my visit and made it out of the isolation phase just in time to get back on the plane to SLC. COVID is no fun, so get your booster! I'm getting back into the swing of things after COVID and travel still. I'm a creature of routines and rhythms. I have a chaotic job, so my goal is to make the rest of my life ...

 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...

 Hello everyone and happy September! September is a very special month because it's Childhood Cancer Awareness Month. The color is gold, for our children who are golden (according to my mom). Now that I've restarted the blog, I'm aiming to ramp up the posting for September 2023. I don't think I can commit to a post a day unfortunately, not wanting to set myself up for failure. I do think I can commit to three posts a week about childhood cancer, for a total of 13 (or more) posts throughout the month. The 13th post will be the very first week, which will only have 1 post since it's 2 days. Since this is about the total amount of posts I've been doing, I will most likely cut back on other topics and save them all up for October. Isn't October lucky? Thanks for being with me on this blog, and I hope that you learn something new this month.

 Ok, here's the deal. I have heard this saying all my life, accredited to Gandhi, "Be the change you wish to see in the world." Come to find out, he didn't actually say that! This idea is actually credited first to Arleen Lorrance, a New York schoolteacher, in 1970. The quote is from a report on the Love Project and reads: "One way to start a preventative program is to be the change you wish to see happen. That is the essence and substance of the simple and successful endeavor of The Love Project."  Recently, I took this as my new motto. It's why I joined my HOA board (sure to be more on this later) and it's what's been driving a lot of other things in my life. Being the change is a lot of work, and will probably make even more work, but eventually I hope it's worth it.

 In the last year or so, I have started eating more vegetables. Mostly in the last few months. Since this was recommended to me as part of a healthy lifestyle (fancy way of saying my doctor told me three times to do this), I've had to come up with ways to enjoy the vegetables I've hated for years.  I started with veggies that I liked the most: spinach, tomatoes, artichoke, and green beans. I did simple things at first, starting with spinach and ranch, tomatoes with salt and pepper, marinated artichoke hearts as a snack or topping, and roasted green beans. Then I branched out. I added things to the spinach, making fancy and well adorned salads with vinaigrettes instead of ranch, including adding those tomatoes and artichokes. I roasted other vegetables: cauliflower, brussel sprouts, sweet potato, turnip, and parsnip. I experimented with vegetables soups and stews, combining veggies with beans, chickpeas, and more. I found things to add the vegetables to, like quinoa and pasta. ...

 Here I was under the impression I'd forgotten about this blog for over a month, when in fact I scheduled enough posts that it's only been 2 weeks. Better. It's finally (slightly) cooling off, meaning it's been in the 80s instead of the high 90s. Also an improvement. I'm enjoying my new increased outside time, meaning I don't have to wait until 8 pm to go for my walk. Also a good thing. I'll have more posts coming up, but just checking in to say hi!

 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 ...

 I've tried quite a few new recipes this month. My favorite was probably a ginger tahini noodle dish, which was easy to put together, especially with premade stir-fry noodles. It was just a little heat, very savory, and tasted very rich. It was a little involved, but definitely worth it.     Some other delightful recipes included a chickpea couscous, a chicken sausage pasta dish, and sunchoke sautee. All delicious recipes, all worthy of making again. The biggest challenge of the month is that it's been quite hot to be using the oven and stove heavily, but I'm making it work.

 I have read so many books recently that, rather than make separate reviews, I thought I'd do one big post. Here's what I read since mid-June: Between the World and Me by Ta-Nehesi Coates An Unquiet Mind by Kay Redfeild Jamison Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World by J. Mark G. Williams The Emotionary by Eden Sher Intuitive Eating for Life by Jenna Hollenstein Awkward: The Science of Why We're Socially Awkward and Why That's Awesome by Ty Tashiro Use Your Difference to Make a Difference: How to Connect and Communicate in a Cross-Cultural World by Tayo Rockson Exhale: 40 Breathwork Exercises to Help You Find Your Calm, Supercharge Your Health, and Perform at Your Best by Richie Bostock Different, Not Less: A Neurodivergent's Guide to Embracing Your True Self and Finding Your Happily Ever After by Chloé Hayden Whew, that's nine books! Plus a couple cookbooks on the side, not going to count those. Two were audiobooks, but the rest we...

 Did you know that for many people with blood cancers, a bone marrow transplant is one of the only routes to a cure? In 2012, shortly after I turned 18, I signed up to donate bone marrow, should I match with someone. The National Bone Marrow Registry, set up by the nonprofit Be the Match, takes saliva samples from people around the country, analyzes them, and stores that profile in a database that doctors can search through for bone marrow or peripheral blood stem cell (PBSC) donation. Many diseases, including leukemia, lymphoma, diseases of the bone marrow, and certain immune and metabolic disorders ( x ). Blood stem cells from a healthy donor are needed to treat or cure these diseases. We often hear of family members donating, but up to 70% of patients don't have a family member who matches ( x ). Joining the registry is free and easy. This page walks you through how you can sign up to save a life.

 So it's about the middle of summer. It is hot here in Utah, hitting the 100s regularly. I'm trying to stay active, but of course going outside is difficult, even when the sun is down. I continue to cook new things, including trying couscous and sunchokes, numerous new recipes, and new ways to prepare old ones. I am busy at work. I had a little reprieve for a couple of weeks, but now I'm into one event a week until Labor Day, except next week because my event was cancelled. I'm waiting on a work call right now, and had a 7 pm meeting yesterday, but it's been less evenings than in June or May. Last week I was a career speaker at a local university, for sixth graders. I also made a nifty sparkler craft, have been to the library so many times, and read more books that I can count in my head.  I've done more this summer than any summer in years, in terms of outside of work and other activities. I'm keeping busy, but also trying to rest, as my job is also busy. W...

 So one of my recent reads was "Finding Latinx: In Search of the Voices Redefining Latino Identity," by Paola Ramos. The closest word I have to describe it is a term from grad school, ethnography, which is basically the in depth and immersive study of a culture. The book is a series of interviews with Latinx people, asking them a bunch of different questions on identity, experiences, and background.  The writing was very well done, with diverse interviews mixed in with facts, demographics, history, and current events. It was a really good overview of the Latinx community and I'd recommend it to anyone looking to explore Latinx people in the US more.

May was Brain Tumor Awareness Month, and July 19 is Glioblastoma Awareness Day. Learn some glioblastoma fast facts: While glioblastoma is the most common adult primary brain tumor, glioblastomas only account for 3-15% of childhood nervous system tumors. Each year about 500 children in the US are diagnosed with glioblastoma. This is a small percent of the total 14,490 Americans diagnosed annually, but an important group. Glioblastomas are most common in children ages 8-18 years old, but have been reported as early as in utero. Pediatric glioblastoma has a 5-year survival rate of about 20%. Most glioblastoma cases have no known cause. This year marks the fifth annual Glioblastoma Awareness Day, according to the National Brain Tumor Society ( x ). You can read some of the stories of glioblastoma here . They do have a Pediatric tag within the stories, but as of writing this, there aren't any published. You can submit your own, to add a voice to pediatric glioblastoma warriors. Sources:...

 I am a hardcore lover of paper books. No preference between hard and soft cover (other than soft cover travels better), but a physical book is my favorite way to read. Recently I took a trip and I "read" two audiobooks. Now, I'm a firm believer that audiobooks count as reading. I totally respect that this is the best way for some people to read, including those who drive a lot, those with low vision or blindness, or those who just like it better. But for me, there's a little disconnect. Since I prefer reading physical books so much, audiobooks feel weird to me, like it's not real. Don't get me wrong, it's fabulous for my Storygraph stats, but somehow it feels off. Like it's not a real book. Reconciling this is something on my mind, as I've considered adding more audiobooks to my repertoire. It does come with the same questions as podcasts of, what do I do with my hands? Since I don't drive long distances regularly, I don't have the ability...

 I've been practicing mindfulness for years now, on and off. I usually just meditate silently, maybe a YouTube video here or there, but recently I've started using an app to lead meditations. It's called Smiling Minds, put together by an Australian nonprofit (so bonus all the narrations are with an Australian accent). It's completely free, although they do occasionally ask for donations. It has tons of meditation options, ranging from 2-3 minutes up to 30.  I've come to thoroughly enjoy my time with Smiling Minds. I look forward to trying a new meditation or listening to a familiar one guide me through breathing, reflection, and more. I generally meditate 1-2 times a day, but sometimes will do my own version throughout the day. I would offer it as a free alternative to other popular apps.

 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...

 Recently I took a trip to northern Montana. So far north that the signs pointed you to Canada. I was there for a wedding of a close friend from camp, and two sunsets and a rainbow. I drove, by myself, the 10 and a half ish hours each way. I rented a little cabin outside of town and got to read and see horses and a field of clover. I saw the downtown of this cute mountain town, got to drive by a beautiful lake not once by twice, and listened to two audiobooks, four podcasts, and much music. It was a lovely trip.

 As we probably all know, June is Pride Month here in the US (among other things). As a queer person, this is a special month, but this year it's a part of a trend to remove the rights of queer and trans individuals. From hormone treatment restrictions to drag bans, the LGBTQ+ community is being attacked.  I live in a "red state." This means that my rights are more tenuous, and have indeed been decreased over the past few years, as a woman and as a queer person. I am concerned for the future. What will happen if the Supreme Court overturns gay marriage? What will happen if they decide to support discrimination in the name of religion? What is my future in Utah and in the US? Obviously I have no good answers to these questions. I'll just continue to work and play and live here, because what else can I do.

 Recently I read a book that was less self help and more about the concept of self help - Help Me: My Perfectly Disastrous Journey through the World of Self-Help, by Marianne Power. Overall I found the book interesting, but there were definitely points where I went, do I need to keep reading this? The summary is that Marianne goes through a self help book a month (sort of) and write about it, creating this book. In practice it got messy and she went through a lot of trials with it. I sometimes cringed at what she was doing, because while I would consider myself a pretty regular reader of self help, these books she was using were out there. Obviously they have a following, so some people ascribe to them, but Marianne really did. It was written really well, even if I didn't like all of the content. It was conversational and engaging, and fairly fast-paced. Overall a decent book. 3.5/5.