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Why Siblings of Children With Illnesses May Need the Most Attention

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“He’s ruined all my birthdays, Mom,” Eli told me. “He was sick for every single birthday.” His statement is pretty accurate. Every birthday Eli is most likely to remember, from ages 4 to 7, Sam was sick. It was like clockwork every year, right in the middle of Eli’s party. 

The first year Sam had just been diagnosed and was lying on the couch sleeping most of the day. I couldn’t leave Sam’s side so I sat inside with him while everyone celebrated outside.

The year after that, I planned a huge party for Eli to make up for the year before. Sam got sick in the middle of the party. I had to leave my house full of 50 people and my sweet birthday boy to take Sam to the ER and get admitted.

Then Sam spiked a fever again during Eli’s party the next year and the following year.

Long stays in the hospital triggered anxiety for Eli. He always believed Sam would die, and I would never come home. When my husband, Rick, and Eli would leave to go home, Eli would scream through the hallway all the way to the parking lot. I often thought security would try to stop Rick from leaving the hospital because Eli would be screaming, “No! I want my Mommy!” as Rick was carrying him out the front door like he was stealing Eli from the unit or something. That always went through my mind as I sobbed uncontrollably, thinking of Eli screaming through the hospital for me. True story.

Eli once said to me monsters put bugs in Sam and that’s why he has cancer. Eli was 4 when he said that. I knew then he was wise beyond his years and he would be scarred for life. I’ve talked to others about this, and we’re all in somewhat of an agreement that although the child with cancer’s life is dramatically changes, the sibling’s life also changes just as much, if not more. The child with cancer is trying to survive, while the sibling is trying to help them survive and trying to have a normal childhood. There is nothing remotely normal about their childhood.

I will admit there are many times when Eli has gotten the short end of the stick. There are times when I have begged Eli to sit with his brother because Sam would cry for him, but Eli didn’t want to stay to watch what was going on. Just this week, while Sam was getting blood work, Eli didn’t want to stay in the room. Sam was crying for Eli, who was trying to walk out the door. I begged Eli to stay. He stayed, reluctantly. What am I doing to this poor child, I thought to myself. What am I doing? I see the resentment Eli has for Sam occasionally, but I also see the worry he has when Sam is not well. He becomes a 7-year-old mother, feeling Sam’s head and making sure he is comfortable. Sad and beautiful all at the same time.

The sibling effect is a complicated and neglected part of childhood cancer. It pains me to see how this has changed Eli, but it also makes me so freaking proud. The last few years have shaped Eli into this caring, anxiety-filled child who thinks if he gets a cut on his arm it will get infected and he will lose a limb. Too much down time in the hospital, I guess.

Just a word of advice: If you know a family with a child who is chronically or terminally ill, always remember the sibling. Include them in everything. Never let them feel left out. To be honest, they’re the ones that need the most attention.

Photo credit: Laura Neary

Follow this journey on Chemo and Donuts.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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The Touching Story Behind Mom's Photo of 2 Child Cancer Patients

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One moment, captured on camera, is inspiring people all over the county.

Maliyah Jones and Madelina DeLuca are both cancer patients at the Children’s Hospital of Pittsburgh, WPXI News reported. They had only recently met when Maliyah’s mother, Tazz Jones, caught a special moment between the two girls with her camera.

Caption this! Repost & Share please! Trying to get this picture seen all over the world. So many people have been...

Posted by Tazz Jones on Sunday, May 3, 2015

 

Madelina, 2,  has acute myeloid leukemia, according to her GoFundMe page. Maliyah, 5, was diagnosed with neuroblastoma when she was 2 years old, WPXI News reported.

Since Jones posted it on her Facebook page earlier this month, the photo has been shared hundreds of times on Facebook and the story has been picked up by news outlets all over the world.

I really want this picture to be seen all over the world because it expresses so many things — friendship, sickness, love, comfort and support to name a few,” Jones told ABC News. “I want people to feel what I felt the moment I took the photo.”

Hear more about Maliyah’s story in the video below: 

To visit Maliyah’s fundraising page, go here. To visit Madelina’s, go here.

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One of the Best Gifts From My Illnesses Came in a Tiny Package

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I have always been the type of person who needed to know what was going to happen. But when I first began this journey eight years ago, when life threw a range of symptoms and diseases my way, including rare liver, gastrointestinal and allergy conditions, the last thing I had was control. Thanks to some incredible gifts that my illnesses have given me, however, I’ve learned that every day may not be good, but there’s something good in every day.

Yes, that’s right. I said my illnesses have given me gifts.

These gifts have come over time. They weren’t immediate and I only began to see them when my heart was ready. Some are simple, but breathtaking — a good belly laugh, a new set of sheets on my bed or hearing my favorite songs on the radio. But one of my greatest gifts came in a tiny package, in the form of a sweet 11-year-old girl.

Almost a year ago, I got a message from a woman named Karen, the mother of Jess, a little girl with a brain tumor. Jess and I attended the same children’s hospital, and she explained that her daughter could really use someone who understood what she was going through. Although I don’t have a brain tumor, I did understand what it was like being sick at the prime of your childhood.

When I met Jess, she was sweet and shy, with a tiny voice like Minnie Mouse. She carried a stuffed teddy bear wearing a tiny t-shirt that said, “One tough cookie.” During that first visit we talked, laughed and shared stories about our illnesses and our times within hospital walls. Then, just as quickly as it began, our visit was over. 

My visits to Jess continued, and each time we played silly games to get to know each other, talking about our favorite smells, songs we can’t stand or foods we love to eat. We also talked about what made us anxious and sad. For her, it was going to the hospital for appointments. To help ease that anxiety, I decided I would go to her next appointment with her. And although I was determined to make it a positive visit for her, as she did with everything in her life, Jess made the visit positive for me.

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For example, her tumor, which she named Tommy, isn’t something that’s trying to hurt her, but something that will help her grow. Chemo isn’t damaging her, it’s helping her get better. She is always there to remind me of the beautiful things in life.

Helen Keller once said, “Keep your face to the sunshine and you cannot see the shadows. It’s what sunflowers do.” That is Jess. That’s why I nicknamed her “my sunflower.”

I was given the sunshine that day. She’s taught me that life doesn’t have to be perfect to be wonderful, and that beauty can be found only when you want to find it. With Jess, I always want to find it. I hope everyone find their own Jess one day, and I hope that she inspires you.

As Jess and I always say, the best is yet to come. Hang in there.

Follow this journey on #SimplySabrina.

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What I See in This Photo Now That I Didn't See Before

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I thought my arms looked fat. Brian looked awesome, but I thought my makeup was off. If you looked closely, you could see my stomach sticking out too much. The dress was maybe a little too va-va-voom and my hair was curled weird on one side.

This post is for the ladies. I’m learning a hard lesson here and I want to spare you this hurt. We all play our own hardest critics. How can we possibly judge ourselves so harshly? The worst part about this picture is that this occasion really had absolutely nothing to do with how I looked, and a whole lot more to do with the bride! 

The author and Brian with their arms around each other, smiling for the camera. He's wearing a suit and tie, and she is wearing a pink dress and gold earrings.

Oh, I’ve said this before, but we just didn’t know. I could not have fathomed a little over a year ago at my oldest friend’s wedding what we were gearing up for. I had an invasive tumor at this point. I was already months late on an ultrasound ordered by my doctor.

The lady in that picture has cancer. Huh? Not that chick. She is dancing the night away with her favorite guy, laughing and hugging on old friends and dancing some more.

A residing theme in this journey is vanity. I think I’m almost over it. But somehow, I’m still not even close. Here is what scares me: if I’m not over it after this, then I’m terrified of the lesson to come.

Here is a secret. I still look at myself in the mirror in yoga class and notice how I’m a couple of sizes bigger than the lady in front of me. I still search for new wrinkles and I am obsessive about checking for gray hairs in my incoming crop.

I have nothing to teach us here. No lesson I’ve learned. In fact, I’m appalled at how this has not changed in me. I am hurt at myself that I can still actually mutter the words, “I feel fat,” when there are things of so much more consequence to address.

I’m not usually so conflicted in what I want to say. I think I only know how to be truthful and it would be inauthentic of me to offer advise on being kind to yourself. In the same breath and out of the same mouth I can promise you that I see so much beauty in you, and I see a beauty that I did not before in the lady in the pretty pink dress. She was so happy, and honestly, she was having a really good hair day. Her heart was shining through.

Please be easier on yourself than I was. You never know what your future holds.

A photo of the author after going through chemotherapy

This post originally appeared on the “More to Learn” Facebook page.

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25 Pieces of Advice for Anyone Going Through Chemo

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1. Cop an attitude.

Imagine yourself as a warrior, a goddess, a superhero, a totally swaggering badass. All of the above. Picture yourself as victorious, not a victim. A “poor me” mentality isn’t going to help anybody, especially not you. Gird your loins and go.

2. Ask questions… but not too many.

Educate yourself about your mode treatment. Ask your medical team questions, but don’t get overwhelmed by the details. Learn as much information as you’re comfortable with, but don’t get bogged down by it. If you start freaking out, take a deep breath and step away from the Internet.

3. Say yes.

Don’t be afraid to say “yes” when someone offers to do something nice for you — like cook a meal, drop off a few groceries or drive you to a treatment. You’ll be surprised at how good these small acts of kindness feel — for them and for you.

4. Say no.

Don’t be afraid to say “no” when you’re tired or when you simply don’t feel like doing something. You only have a limited amount of energy and you have to pick and choose what you do. People will understand and if they don’t, tough.

5. Get support.

There are plenty of fantastic support groups out there, just waiting for you. Find one that’s a good fit. At first, I frowned on them. “I don’t want to sit around with a bunch of bald women bitching,” I bitched to my husband. But I was pleasantly surprised with my first SHARE meeting — and almost two years later, I’m still going.

6. It’s okay to cry — or yell.

Once in a while you’re going to be down in the dumps. You’re going through hell and recovery is a hard road. Once in a while, you’ll snap and shout at someone. Give yourself permission to boo-hoo and rant for as long as you need. (But not for too long.)

7. It’s better to laugh.

My son David was 13 when I was diagnosed. He could just look at me, tell I was hurting and suggest, “Let’s watch ‘The Cleveland Show,’” because he knew it would make me laugh, no matter how bad I felt. Find your own “Cleveland Show.” It could be “I Love Lucy” or “CollegeHumor” online. Discover your funny place let it take residence. Either you laugh or you cry, and laughter’s a better alternative.

8. Ask for help.

If you need help, ask for it. Now’s not the time to be proud. The dynamics of your life have just changed, so don’t expect to be able to do what you used to do. I remember having a mini breakdown when I realized that my hands were too weak to squeeze the oranges I needed for a recipe. “I can’t even feed my family anymore,” I wailed. What I should have done was asked someone to do it for me. End of story.

9. Do it with panache.

When she was diagnosed with breast cancer on April Fool’s Day 2005, post-porn modernist Annie Sprinkle decided to turn the experience into performance art. Not only did she and partner Beth Stephens take sensual photographs shaving each other’s heads, but they transformed Annie’s infusion sessions into a chemo fashion show. Once, they wore clown noses and bunny ears, and another time, they dressed in tacky cruise wear. It not only kept up their spirits, but also cheered on Annie’s fellow infusees. Find your own way to “own” your chemo.

10. Rock your bald head.

Losing your hair could be almost as traumatic as losing a breast — but hair grows back. There’s no point in bemoaning the fact that your hair will come out in clumps. It’s gonna happen — but you can do it in style. Get a hardcore crew cut before you find handfuls on your pillow. Rock the hell out of your beautiful, bare head! Decorate it with temporary tattoos. Try out funky new wigs. Go pink pageboy or blue curls.

11. Don’t get stuck on stats.

Some people become junkies to the statistics — i.e., I was paralyzed with fear when I read that women diagnosed with Stage 1 breast cancer like me had an 86 percent survival rate. That meant in a room of 100, 14 of us would be dead in five years. I forced the thought out of my shiny head, reminding myself that I was much more than a statistic.

12. Arm yourself with beauty.

As much as I was able, I surrounded myself with gorgeousness. I went to museums to see paintings I loved, took in as many sunsets as humanly possible and went on gentle hikes to favorite spots whenever I could handle it physically. The calm, joyful feeling I got from infusing myself with loveliness eased my wounded soul.

13. Surround yourself with love.

Yes, it does take a village. Assemble yours with people who adore you unabashedly and will stand by you, no matter what. Pals who would hold back your hair (if you had hair!) when you puked, will now drive miles to drop off Trader Joe’s puckers because they make your dry-as-ash mouth feel better. They will also kiss your bald head and tell you you’re beautiful even when you know you’re not.

14. Create your own “Hit Parade.”

Develop a playlist that makes you feel fierce and hopeful. Michael Franti‘s infectiously inspirational song “I’m Alive” came out just before I started chemo and it became my anthem when I needed a lift. Whenever possible, I went to see live music that moved me: standouts were concerts by keyboard wizard Marco Benevento (I even took off my head wrap and danced like no one was watching!) and delicious songstress Dayna Kurtz.

15. Eat a lot.

The steroids they gave me to fight nausea during chemo made me as hungry as a pregnant bear. But I tried to eat healthy, lots of fruits and veggies, plus treat myself to a scoop of Ben & Jerry’s Phish Food every now and then to soothe my dry-mouth. Now’s not the time to count calories. Just worry about making yourself healthy enough to weather your next chemo and to bolster your white blood count.

16. Or eat a little.

If nausea is gets the best of you, eat whatever appeals to you. Munch on good, clean food if you can, even if it’s miniscule amounts. Watermelon, pineapple, rice pudding, whatever. Remember, this too shall pass.

17. No negativity.

Surround yourself with optimistic people. I shied away from folks who urged me to call their brother’s oncologist — even before my biopsy results were in — or those who dwelled in worst-case scenarios when the star of the story always died in the end.

18. Watch this.

One of my yoga buddies made an empowering short about how to be a cancer cheerleader when you or someone you know is diagnosed. Filmmaker Nicole Haran’s “Do Great Campaign” focuses on keeping people positive around cancer. I watched it countless times to give myself an extra boost.

19. Don’t comparison-shop.

Don’t make the mistake of comparing your treatment regimen to someone else’s. I’ve had people grill me with “So why didn’t you get a PET scan” and “Why did you have a mastectomy instead of a lumpectomy?” Your mantra should be: “Every cancer is different, so every treatment is different.” Share it freely with others. Or say it’s none of their business (because it isn’t!), like my oncologist suggested I do.

20. Get this book!

When my husband, Peter, and I came home from the surgeon after my diagnosis, he immediately got onto his computer and sent Deborah Cohen’s “Just Get Me Through This! to my Kindle. It became my Bible, my survival guide. Without Deb, I don’t know how I would have gotten by. Now I send copies to friends who are diagnosed.

21. Don’t be afraid to pull the Cancer Card.

There’s no doubt about it: cancer sucks. But there are a lot of people who give a lot of money to help make your ordeal better. Take full advantage of all the free stuff available to you, whether it be therapy, yoga, massages or anything else in between. The American Cancer Society has a great program called “Look Good…Feel Better” that gives free makeup and “how to” instructions (like how to pencil in nifty eyebrows when yours come out). Ride that wave of generosity for as long as you can!

22. Keep a journal.

One of the nicest things anyone ever did for me was give me a journal. (Thanks, June!) In it, I wrote my musings, tracked my weight, energy level, BP and blood counts, plus how I felt each day so I could judge how I might feel on certain days following future infusions. I even wrote down deep, dark thoughts I wouldn’t dare tell anyone else. But the very act of writing them down helped liberate me from them.

23. By any means necessary.

Weathering cancer and chemo might be the hardest thing you ever have to do in your life. Get through it any way you can. Do what you have to, even if it means eating nothing but kumquats or binge-watching episodes of “The Flying Nun.” Don’t judge yourself. Just do what you need to survive.

24. Be kind to yourself.

You might forget a birthday. (Chemo brain isn’t a myth.) You might not have the energy to make your niece’s dance recital. You might not have the appetite to eat the special meal your husband prepared for your anniversary. Accept it. Let it go. They’ll survive and you will, too. Be as forgiving of yourself as you’d be to someone else.

25. Look forward, not back.

Don’t waste time thinking about how gorgeous your hair used to be — try and imagine how healthy and strong it will be when it grows back. Celebrate how many chemo infusions you already have under your belt — not how many you have left to go. Look forward to a cancer-free future, not back towards your sickness!

A longer version of this story first appeared at Ravishly.com, an alternative news+culture women’s website. More from Ravishly:

How I Learned To Get Naked With Strangers Again After My Mastectomy

Fatal Brain Candy: How Prescription Pills Almost Killed Me

Being Thin Didn’t Make Me Happy, But Being “Fat” Does

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Lauren Hill, Basketball Player With Brain Cancer Who Inspired Thousands, Dies

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Lauren Hill passed away early Friday morning. The 19-year-old basketball player touched the lives of thousands with her preserverance in the face of terminal brain cancer.

Hill, from Cincinnati, had already committed to play ball at Mount Saint Joseph University when she got a diagnosis of Diffused Intrinsic Pontine Glioma (DIPG) last year. Knowing there was a chance she would not make it to the opening game of the season, staff members, the NCAA and the opposing team worked together to move it up and make it a home game.

On November 2, Hill realized her dreams of playing college basketball. She took the court with her team to face off against Hiram College with thousands of people packing the arena to support her. When she scored the first points of the game a celebration broke out in the stands.

Watch the inspiring moment in the video below:

I never gave up for a second, even when I got a terminal diagnosis,” Hill told WKRC News. “I never thought about sitting back and not living life anymore.”

Her legacy lives on not only in her inspiring message but also because she helped raise more than $1.5 million in donations that will go towards finding a cure for pediatric brain cancer, Sporting News reported.

Learn more about her journey in the video below: 

She was a huge gift from God, and if he takes her back then we’ll have to deal with it,” Lisa Hill, her mother, told WKRC News. “But while we had her for 19 years, she was ours.”

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