Category Archives: Kids

Talking to kids about cancer? There’s an app for that | The Magic Tree

This post was sponsored by Celgene Corporation. Personal opinions and thoughts are my own.

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When I was diagnosed with breast cancer, one of my biggest concerns was for my kids—I wanted them to understand what was going on and be comfortable asking questions and interacting with me. They were 5- and 8-years-old at the time, and they were both smart and intuitive kiddos. I knew that I would want to be very frank and honest with them, but I didn’t want to scare them, either. That’s a pretty fine line. Someone once gave me a book written for kids whose mom was diagnosed with breast cancer. I read through it hoping that it might be something that would help explain things in an age-appropriate way to my kiddos. The scientist in me wanted an age-appropriate but scientifically accurate explanation, and the book I’d been given was pretty far off base. The conversation went well, as well as it could, I suppose, but I was a little caught off guard when the first words out of my little guy’s mouth were, “Are you going to die?”

Which is why I want to talk about a new, free app from Celgene called The Magic Tree. Just after arriving home from a support group meeting with other breast cancer moms with little kids where we’d been talking about just this issue, I got an email about a new, free app Celgene developed to help families facing that discussion. They created The Magic Tree app (download it at magictreebreastcancer.com or from the App Store or Google Play Store) for kids who are 5- to-8-years-old.

App Overview

The Magic Tree app has four different sections, and each features a short animated video and a game. As kids watch videos or play the games, they earn different stickers that decorate their tree. If you’re a left-to-right, rule-following left-brain like me, you might be inclined to start at the first icon of a house, but fight the urge and go to the playground first.

celgene2t the end of each video, they’ll tell you which section to head to next, and the videos make the most sense if you go in order.

The videos were well done, age appropriate, and (to my delight) scientifically sound. I would definitely suggest that you still watch them first to make sure that you’re comfortable with the amount of information they give and are ready for questions after you’ve watched them together with your kids. They are careful to tell kids that not all people with cancer die, which would have been a helpful message when I was talking with my son. They even encourage kids that sometimes grown-ups are better at talking about things like cancer when kids ask the questions. The longest video is the one that discusses how doctors treat breast cancer, and it does a pretty good job of talking about the treatments and their side effects. I was amused when they used a spaceship vaporizing bad cells to represent the immune system, explaining that cancer cells trick the immune system and can hide and grow without being killed. I was also particularly fond of the knight who represented chemotherapy, slashing through a few good cells in his efforts to slay all the cancer cells.

celgene3They explained that chemo will kill some other fast-growing cells in addition to the cancer, and that would cause side effects, like hair loss. The narrator assures kids that hair loss is very common (not something to cause fear) and subsequently showed the mom in the video bald or with a scarf on her head. Of course, there were also discussions about surgery and radiation, and they talked about how a mom might feel after her treatments. They were all short, simple, and ended by encouraging the child to speak to his mom with any questions.

Interactive games

Each section also has a game. In three of the sections, the game is just for fun—not a lot of skill required and no relationship to cancer. Which is pretty on point with one of the messages of the videos—you still get to be a kid and have fun even if mom is sick. The game in the first “Friends and Relatives” section, though, was pretty relevant. Kids are at a picnic, and they are told to hug the people there by tapping them. They have to be careful, though, not to hug anyone who is sick, and so must avoid tapping people who are coughing or have a red nose. This reinforces the message that it’s important to help keep mom healthy, so kids are encouraged to avoid people who are sick. Quite a few of the people appearing for a hug are bald or scarf-clad mom figures, and kids will quickly learn that it’s ok to hug mom.

Resources

The last section of the app can be accessed by clicking the menu icon at the top right. In that section, there is a glossary that the kids are encouraged to use when they see a word they don’t understand. They can tap the word and it will be read aloud along with a kid-friendly definition. It includes some words that aren’t used in the videos, but that parents might use when talking about cancer. I think probably my favorite section of the app is the discussion guide for parents. Be sure to read through this section before you watch any videos with your kids. Even if you decide not to have your kids watch the videos or play with the app, this is a great resource for parents. It has questions kids might ask as well as some thoughtful considerations about how a parent might answer. Finally, the resource section offers some suggestions of where to go if you need more information or support.

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Overall Thoughts

The app is colorful and interactive, and while my kids were too old to ask for real impressions, I think most younger kids would happily watch a 2-3-minute animated video and play the games over and over again. Older elementary kids might not play the games as much once they had them figured out, but they would likely draw comfort from being able to re-watch the videos since knowing what to expect often eases anxiety. I love the fact that the app was developed with input from patients who are part of Cancer Support Community—having stakeholder involvement early on means that the final outcome is much more relevant. I would be remiss not to point out that while men can get breast cancer, this app is designed with a mom as the cancer patient. However, the glossary did point out that, while it is rare, men can get breast cancer too. And though I spoke about it a little differently with my own kids, I appreciated that one video addressed the fact that metastasis is when breast cancer spreads to other parts of the body, something that is often overlooked in children’s books. It’s hard to believe it’s been more than five years since that October afternoon when I was diagnosed. And in the years since, I’ve chatted with lots of moms with littles who are trying to figure out how to talk to their kids about their own diagnosis. One thing that I quickly learned is that no two kids are the same, no two families are the same, and so every family’s choice of what and how much they share will be a little different.

As I said, I quickly learned that the way I talked to my kids about cancer might not be right for every family. Parents know their kids best, and they need to make their own decisions about how to share things. But The Magic Tree app is an excellent resource for parents, and it could be a great starting point for discussions for many families facing a mom’s diagnosis with breast cancer.

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My Rock ‘n Rollin NED-iversary

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I know it’s a little overdue, but I thought I should show you how I spent at least the first few hours of my NED-iversary. Since Emma Clare had to be in Leesburg super early for a gymnastics competition, as soon as I fixed her hair, I kissed everyone goodbye and headed to take the metro downtown. It was a great day for running, and I was expecting lots of music and mayehm along the course. The Rock ‘n Roll series didn’t disappoint– bands most every mile and lots of people cheering, some from their stoops while drinking their (morning) beer! Besides all the water stops, there were plenty of people handing out water, champagne, beer, and even barbecue! But what really distinguished this half from the Nike half I did two years ago was the hills. Oh, the hills. The Nike course was so flat that the slight, barely distinguishable incline was the only “hill” I can remember. This course, on the other hand, had not only a steep hill that was over a half mile long, but lots of other decent hills, too. And of course, that one just before the finish. Awesome. But I ran this one without having to give myself any pep talks, and even made it up all those wretched hills, finishing two minutes faster than the last (much flatter!) half, so we’ll count that a win!

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I even got my first real medal! I love the Tiffany necklace I earned at the last race, but there is something pretty cool about a big, heavy medal!

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Not to be outdone, the rest of my family had a pretty good weekend, too! Emma Clare came home with four medals from her gymnastics competition, Turner finished out the basketball season with a celebratory medal, and Clay earned a special achievement medal at work on Friday! What a wonderful weekend for our family.

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Running, Motherhood, and Breast Cancer

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I won’t rewrite the whole post here, but be sure to check out my new post on the Cure Community page. It’s a little bit about running, but a lot about the realities of being a mom with cancer, all inspired by the Melissa Etheridge song, I Run for Life, which randomly popped up on a Spotify playlist a few years ago. (Kleenex alert: Mom, you might want to skip this one. You know, the realities of having a child with cancer and all…)

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Breast Cancer Awareness | Middle School Style

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So apparently my sweet girl and some of her friends decided that they would all wear pink today. Because breast cancer.

Probably everyone reading this knows I’m not much into pink for the sake of pink. Another thing I’m not into? Crushing the good intentions of an eleven year old with my anti-pinkwashing angst.

And so (I hope) I made the best of the situation and explained awareness without action is a little empty once everyone is already aware. Since middle schoolers don’t need to head out for an annual mammogram, we decided to look for something that middle schoolers could do. We brainstormed some ideas of things kids could do if they knew someone with breast cancer or if a friend’s mom had breast cancer. We talked about it Wednesday, but then I didn’t prompt at all when she was making the poster last night. Things like “bring them dinner,” “watch their kids” and “talk about things you would normally talk about” were on her list of how to be a good friend in a tough time. Part of me hated helping her make that giant pink ribbon. But if I learned one thing last October, it’s that the pink is already there, I might as well make it work. So today, bedecked in the fluffy pink skirt that I made for her years ago along with pink leggings and pink fringe boots, she shared a poster with her homeroom class to help them understand how to help a friend whose family has been affected by cancer. And I couldn’t be prouder.

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Ten Things Breast Cancer Taught Me

10 ten things breast cancer taught me run lipstick chemo

Three years ago, I went from being a scientist and stay at home mom to a breast cancer patient in what seemed like a heartbeat. Chemo and a double mastectomy with reconstruction have taught me a few things that doctors never could. If I could go back three years, this is what I’d tell newly-diagnosed me…

  1. You will get over your modesty very quickly. I’ve never been part of a flash mob, but I’ve definitely flashed enough people to constitute a mob! Best estimates are that I’ve flashed well over 100 people since I was diagnosed. (Yes, I counted.) My body went through so many changes during my treatment for me to share with professionals and curious friends alike. There was the port– the weird alien-like device implanted under my skin to deliver my chemo meds, my mastectomy scars and drains, final implants and even my first tattoos— trompe l’oeil nipples!
  2. You will be in awe of how much you are loved. Your family, close friends, friends you haven’t seen in years, people you don’t even know will rally to support you in ways you could never imagine. They’ll bring you meals and watch your kids.You’ll return home to find cupcakes and magazines with thoughtful notes on your doorstep. Your days will be filled with coffee dates, and your friends will fight for the opportunity to join you at a four hour chemo appointment. Your out of state mom will send you a fabulous pair of flats to wear to chemo because she knows your love language is shoes. You will be overwhelmed with gratitude.
  3. You will see breast cancer everywhere you look. Remember when you were pregnant and it seemed like every woman you saw was pregnant, too? Especially if you share my extreme misfortune and are diagnosed in October amidst breast cancer awareness month, you will see pink ribbons everywhere. At the grocery store, they’ll ask if you want to round up to donate for breast cancer. You will fight the urge to tell them that you gave at the office. Or that you’re giving two breasts and a full head of hair. You’ll keep your forty-two cents, thank you very much. Instead, you’ll probably just smile and say, “Thanks, not today.”
  4. You will learn that immediate reconstruction is not immediate. I remember thinking how great it was that surgeons could completely reconstruct a woman’s breasts at the time of a mastectomy. I didn’t realize that “immediate reconstruction” actually means “starts at time of mastectomy and finishes with at least one more surgery sometime in the next year or so.”
  5. You will become obsessed with other women’s breasts. Once you’ve had a breast surgery or two, you kind of forget what normal breasts look like. What you see in the mirror is not necessarily bad, in fact it may be great. But it’s not normal. You will begin to examine other women to see how your breasts compare to theirs. (You will hope they don’t notice this.)
  6. You will talk about things like drains, mouth sores and nipple tattoos all the time and in the strangest places. Like new moms form an instant bond discussing the trials and triumphs of new motherhood, you have an immediate connection with anyone who’s been through a breast cancer diagnosis. You will also have these chats with everyone from your neighbor to your dental hygienist to an elderly stranger at Starbucks, because when you’re bald, these kind of things just come up.
  7. You’ll wish you had more pictures. No, really. Nothing reminds you of how far you’ve come than seeing where you started and where you’ve been. Plus, pictures smiling with your kiddos, spouse, or friends are a great reminder of how much you’re loved.
  8. You will find that you didn’t realize how important breasts really are, even if you’re done using them to feed babies. Your surgeon will tell you early on that you won’t have any sensation and you will nod, thinking of nothing but getting rid of the cancer. You won’t realize the significance of losing sensation. Not so bad not to feel the needles of the tattoo artist recreating your nipple. Sometimes devastating not to feel the gentle touch of a husband’s hand or a child’s nuzzle.
  9. You won’t need to wear a bra! You may think you will anyway, but since it’s tough to find one that fits, you will likely get used to going braless pretty quickly. Your BFF will probably insist that you try on every strapless and backless top that you see when you’re shopping “because you can.” (And you will totally rock them!)
  10. You may never again have “just a headache.” Every little ache and pain will make you think your cancer is back. Hip pain? Cancer. Menstrual cycle two days short? Cancer. Forehead pimple? Obviously cancer. BUT, you will get used to it. You will be surprised when you go an entire day without thinking about cancer, or when you forget to mention to a new doctor that your nipples aren’t real. Yes, you will be different, but you will get used to the person that you are.

The most sobering thing I learned is that roughly 30% of women diagnosed with early stage breast cancer will develop a recurrence– metastatic disease– that will ultimately claim their lives. While women with breast cancer are living longer and stronger, 108 women still die of breast cancer EVERY. SINGLE. DAY. The patient in me wants you to understand the personal side of the disease, but the scientist in me wants you to know that women with metastatic disease are depending on the breakthroughs that medical research provides to keep their lives from being cut tragically short.

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My Ambivalence of Normalcy | “Normal” After Breast Cancer

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After I was diagnosed with breast cancer, I can remember that maintaining normalcy, especially for my family, was one of my main concerns.  I didn’t want to hide the fact that I had breast cancer, and I knew that things would be different for everyone.  But, for the most part, I wanted things to feel normal for them. I wanted to help with homework, drive to gymnastics, play games, and do Girls on the Run.  But I wanted things to be normal for me, too. Not to pretend that there was no cancer, but to give me some sense of control.  I wanted to be stronger than the cancer, I wanted to be my normal self in spite of the breast cancer. That’s how this blog got its name– I was determined to keep things normal by going for a run and always putting on some lipstick, even if chemo was my next stop.  It did take a lot of energy to be nothing more than normal, but it was energy that I wanted to expend.

But now I have a love/hate relationship with the word normal.  Exactly six weeks after my mastectomy, I went out on my first run post-surgery.  That  night, I was standing in the kitchen, and I remember Clay congratulating me on my first run, and he asked, “So is everything back to normal now?” I bristled. Was I supposed to be the same as before? Was he just hoping that he was off dishwasher-unloading duty?  Of course, I know his question had more to do with the relief that I was healthy and cancer free– free of treatments and their restrictions and side effects– than the dishwasher.

But back to normal? No.  Of course, physically, I don’t have any more restrictions.  I can reach what I want, lift what I want.  I don’t take any medications. (More on that in a future post, if you’re curious.)  But seatbelts still irritate me. My hair is growing out and driving. me. crazy. I have scars and tattoos. I have worries that no elementary school mom should have.  So maybe  a new normal, then? Lots of people love that phrase. I am not one of them, for the record.  I guess technically I have a new set of things that are part of my “normal” everyday life.  But to embrace the phrase new normal seems to acknowledge the fact that there’s no going back to the old normal, there’s no going back to that girl.  The girl with long hair who blamed headaches on PMS. The girl who went for a run because she wanted to lose ten pounds and be healthier, not because she feels like she’s inviting a cancer recurrence with her couch potato ways. The girl who bemoaned having to wear her cute little balconette push-up bra.  She’s gone, and sometimes it makes me sad.

Of course, there are a lot of good things about the word normal.  In fact, when I enter the auspices of Virginia Hospital Center, I crave the word.  My MRI? The PET scan? Normal.  Blissfully normal.  All my genes? Plain old vanilla normal. At support group? It is so reassuring to hear that what I’m feeling is completely normal. Normal is good.  Normal is just, well, so normal.

And so I find myself walking a very fine line.  Between loving and hating the word normal. But I continually strive spend more time considering the good, plain old vanilla type normal than mourning the old normal that is gone.

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Definitely Blame the Camping

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This was the bulk of our crew when we headed camping two years ago.  I call it the ill-fated camping trip.  I wasn’t the most eager camper to begin with.  Then we lost Turner after dark and our sweet babysitter had a run in with the law when she tripped our house alarm (we shouldn’t have set it since we’d planned for her to come take care of our dog!).  That sort of puts a damper on things… I was so thankful for the trip, though, as it gave our family the chance to get to know some of our neighbors so much better. And we really did have a good time.  Who needs to sleep, anyway? Today we were talking whether I was planning to chaperone an overnight fifth grade camping field trip. (Um, no.)   A friend who was on that ill-fated camping trip said I had the best excuse for not going camping ever.  I didn’t have cancer before I went camping.  I came home, then I had cancer.  Argue with that one.

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Bald Heads and Weather Girl Hair | Hair Loss and Wigs after Chemo for Breast Cancer

Perhaps the only picture taken of my while I was wearing my wig...

Perhaps the only picture taken of my while I was wearing my wig…

As I look back, I regret how I used this blog when I was going through treatment.  It was more of a weekly check-in, just to let people know that I was still doing fine.  Truth be told, sometimes I only checked in once a week because I was busy doing fun things and napping and just didn’t feel like spending my precious awake time on the computer.  But still, I wish that I’d had more pictures of all the fun things I was doing– pictures of me in my favorite scarf and fabulous boots wandering around Old Town with Sally, pictures of me in my favorite smartwool hat from Athleta hanging out at the bus stop with all my neighbors, watching the kids play.  Pictures showing that it wasn’t always all that easy, but that it really wasn’t all that hard, either.  And I wish I had pictures of those few times I actually wore my wig.

I didn’t think that I wanted a wig, but it really seemed like it would be easier for the kids if I had one.  Since insurance paid for it (or most of it), I went ahead and got one.  I did my best to get one that looked like my real hair, but really only wore it to church.  It felt so strange, so disingenuous to wear a wig over my bald head.  I’ve also always been a “fusser,” I fuss with my hair constantly.  I tuck it behind this ear, then that,  smooth it out over my neck.  Even with a good wig, that’s just not a great plan.  It starts to get all tangly and before you know it, all I could think about was how much my hair felt like the hair on Emma Clare’s American Girl Doll.  Not a good feeling.

One Sunday, apparently the Sunday after chemo (I can tell because the steroids made me all flushed for several days), the youth director took photos of everyone to make a directory of sorts to hang on the bulletin board.  As far as I know, this is the only picture of me actually wearing my wig, not just playing dress up. (Oh wait, I did find one other picture— even worse than this one– that I took the night after I had my head shaved.)

It was a really good wig, but I only wore it a handful of times.  I think I somehow felt stronger without the wig– like I was showing that I was strong enough and healthy enough that I didn’t need the wig.  That said, there are a lot of women who want to wear a wig for lots of great reasons.  My kids didn’t mind me being bald, and I was so thankful for that.  I have one friend, though, whose son found her bald head very upsetting, so she wore her wig most of the time.  If I were working, especially in an environment where I dealt with clients, I can see wanting to hide my cancer– perhaps they might think I wasn’t up to the task or that they were “helping” me by taking their business elsewhere. If I thought I were going to wear my wig, there are definitely some things I should have done differently.  A shorter, straight wig would be much easier to take care of and wear on a daily basis than the long, wavy locks I bought.  If someone were trying to do the “wear the wig everyday and keep the cancer thing under wraps” thing, I’d probably suggest she cut her hair into a short bob as soon as possible– a style that would be easy to replicate with a wig.  It was mere minutes into our first wig shop outing when Sally and I started referring to that as “weather girl hair.” I hope that doesn’t offend any weather girls.  But seriously, watch the news for a while and you’ll totally get it.  At any rate, if she’s got weather girl hair to begin with, when her hair starts falling out, a quick shave and a swap with the wig might not be all that noticeable.

It’s so funny to me that I desperately wanted to keep things normal for the kids, yet I thought nothing of showing up for a “normal” school event with nothing more than a scarf covering my head.  Either way, especially when she has cancer, a woman should do whatever it takes for her to feel stronger, more beautiful, more powerful.  She should do whatever she wants, whether that means having the best weather girl hair out there, or heading out with a shiny bald head and some great lipstick.

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Kids Will Be Kids | (And a Pixie Grow-out Update)

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After my haircut last week, I was a chaperone on the first grade zoo field trip.  Being in charge of a big group of kids at the zoo is a nightmare. On this trip, though, they make a big deal out of getting a lot of parents to go, so I ended up in charge of Turner. And that’s it. Ironically, I realized that Turner and I haven’t gone on many adventures by ourselves, we always had Emma Clare in tow. He was so cute, holding my hand, and he was in charge of the map– choosing our next stop and directing us to our destination. (Which was probably a good thing, knowing my sense of direction!)  The arrival of three new elephants to the zoo complicated things and kept our time there short, but it was fun to have some one on one time with my boy.

unicorn with ecLest anyone worry that my hair is getting too short with all the cutting, Emma Clare would assure you that it is growing.  At the bus stop, she decided that I was ready for a more sophisticated hairstyle. She calls it my unicorn ponytail.  I haven’t had a lot of girl time with this precious one, either. But this weekend the boys are going camping, so I’m sure she’ll have some big plans for us. (I’m also nearly sure that it will involve Chick-fil-A and a pedicure!)

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Buy One, Give One | Love Your Melon Hats

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Even before breast cancer was a part of my everyday life, I was uncomfortable with the “Pinkwashing” phenomenon– marketing all kinds of products in pink, promising that “a portion” of the sales will “benefit breast cancer.” And I’ve never even been tempted to buy a pair of Toms shoes, despite their philanthropic philosophy, mostly because I don’t love the shoes. (Their moccasin-style boots are starting to turn me, though…) But when I saw a feature on Love Your Melon on the Today Show this morning, I was instantly intrigued.

Two college students started the not-for-profit company as part of an entrepreneurship class at St. Thomas University in Minnesota.  They have grown that class project into a full-fledged 501(c)(3) non-profit, and each purchase of a made in the USA hat provides a hat for a child with cancer.  Cancer aside, I love their branding and the way they produce their hats– they are knitted in Oregon and the patches are sewn on, many by volunteers, in Minnesota.

But back to the cancer thing. I always had long, thick hair. I could never have imagined how much colder it is to have no hair! (Though it came in handy when I was having hot flashes…) And while everyone will tell you that you should buy whatever you want right after a cancer diagnosis because “you deserve it,” the reality is that even with good insurance, cancer is expensive. And seriously, who wants to spend lots of money on a bunch of hats just because they have to? I don’t know about other people, but I’d much rather spend my shopping time and money picking out a new lipstick or a pair of boots.

I was fortunate enough to have friends and family send me all kinds of lovely hats. There was the cancer friend who let me borrow some of her ugly chemo caps– the jersey knit hats that weren’t too pretty but were great for sleeping. A sweet friend dropped off the warmest North Face hat that has a lovely soft lining– perfect on a sensitive melon, and warm enough for all the time spent at the bus stop.  Another friend sent two stocking caps from our Alma Mater, and a St. Louis Cardinals hat, too. And then there was the Rastafarian hat complete with dreadlocks that my brother sent…

So the idea of gifting a cancer patient with a warm hat finds a soft spot in my heart. Together with the cozy look of the hats and the lovely branding, I was immediately drawn to the company.  Apparently, lots of other Today Show viewers were, too, and so their website has struggled to keep up and their inventory is shrinking. (So head on over, but be patient!) I’m really hoping that we have experienced this never-ending winter’s last gasp. But I’m still considering heading to Love Your Melon to stock up for myself and the kiddos for next year.  So many companies bill their products as “helping” raise money for a cause, but this company’s dedication to warming the heads– and hearts– of little kids with cancer while still making what looks to be a quality product strikes the perfect balance.

 

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