Category: Childhood Cancer Stories 2014

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Cari McQuinn

First smiles, first steps, first waves, first words, all the firsts, are such an emotional part of parenthood. There is something about the pride and happiness of those moments that expand your heart in ways you didn’t even know were possible.

It’s no secret that having three children, in less than three years, means a whole lot less time to sit and wait for these firsts to blow my mind. For my precious little third born, these moments just crept up on me.   My littlest guy has had some of his major milestones slip through the cracks. Baby book? What baby book?

Needless to say, my little blondy- locks got some long overdue, well deserved, real-deal attention for his first real haircut. We shaved those luscious baby curls to raise money in support of Donna, her loving wonderful family, and St. Baldricks. And raise money, we did!

First haircuts can be emotional enough in their own right, but this? This was different.

This was pride meets gratitude, meets admiration, meets generosity, meets Billy Zane (seriously though).

It was heart exploding on so many levels. There sat my little man-perched on a platform among people that were all there to love, support, and most importantly-raise money for pediatric cancer.

He never shed a tear as the clippers buzzed his sweet little head. He was so brave. He had no idea what he was taking a part of and no idea what this head shave represented. He had no idea how touched I was when Sheila shared the story of Donna’s first haircut. He had no idea how many other amazing people were shaving their heads, donating their hard earned money, all of us- unified in the fight to end pediatric cancer.

When his head was fully shaved, I snatched my little baby up, as he flashed his mega-watt smile at all his adoring “fans” and believe me…it’s a moment I will never forget.

If you don’t know the story of Mary Tyler Mom’s beautiful little Donna, I encourage you to take a moment to fall in love with her, through the beauty of her mom’s written word. It’s touching, beyond measure.

And when you are done hearing her story, do your part. Do a walk. Have a bake sale. Shave your head. Do whatever you can commit to. Do it, to honor Donna and her family. Do it, so that someday no other family will have to know what it means to live without their child.

We can all come together to fight this bullshit disease (I never said my words were the eloquent ones).

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Speaking of bullshit, there is a lot of chatter in the childhood cancer community that “awareness” campaigns are bullshit and it is ACTION that is needed to better support pediatric cancer.  No one can dispute that more and greater action is needed, but that action always has its seeds in awareness.  Without awareness, no one knows that action is needed. Cari’s post above is a textbook version of that.

Cari, the author of this post, is a mom who had absolutely NO connection to childhood cancer (thank goodness), but became aware by reading one child’s story, my Donna.  I have always believed, as I say in the intro that precedes each of the posts in this September Series, that stories are more powerful than stats.  When you know a child with cancer, you are more inclined to want to help.  Awareness is part of the solution, but that awareness morphing into action is the ultimate goal.  I remain so very grateful to Cari and others like her I have met because they want to turn their awareness into action to support children with cancer.

And last March, as I watched her little one’s beautiful curls gather on the floor beneath him, knowing that this mom I barely knew, outside of a shared interest in blogging, was willing to donate his first haircut to help raise $ for research for kids with cancer, well, it still sort of gut checks me. I will never be able to repay the deep gratitude for the kindness of so very many.

Now, I challenge each of you readers to really consider Cari’s words, which are worth repeating:

“. . .do your part. Do a walk. Have a bake sale. Shave your head. Do whatever you can commit to. Do it, so that someday no other family will have to know what it means to live without their child.”

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You can follow Cari McGuinn at her blog, The Tot Wrangler on ChicagoNow or her page on Facebook.  And for more on what it was like to watch her son’s head be shaved, how even for a few weeks she got a glimpse into how others perceive kids with cancer, READ THIS very powerful post.  You will love her, just like I do.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  Today’s blogger is an oncology RN at Lurie Children’s Hospital of Chicago — Donna’s hospital.  She treated our girl from 2007-2009.  We remain grateful to her and all the nurses.

By LibbyTraeger, RN

I deal with life and death EVERY DAY. Even on my days off, the fear of what I know often hits me with my own children: my daughter waking up with a headache, and then just vomiting once (tiny voice says “she has a brain tumor!”); or when my son was 2 months old and had some strange bruising on only one leg (same tiny voice says, “he has leukemia, and children under a year have a poor prognosis!”)

There are the bad days — watching parents holding each other up in the hallway while we “code” their child, or the gripping fear in a parent’s eye just after they’ve been told their child has cancer, or the sobs of a mother after she’s been told her son passed away in the operating room unexpectedly.

I also have vivid personal moments that run on repeat through my mind at times:  the “tough guy” pre-teen boy clutching my hand as a doctor digs in his veins to find blood, walking that same mother back to her son’s room so she could say goodbye, a brother of a patient asking me “so what REALLY are his chances?,” or thinking I was strong enough to care for a dying patient when I was 7 months pregnant with my daughter and losing it in our break room after the patient passed away.

There are also days that are not just good, but fantastic.  My stories of resilience and of how to LIVE. The little girl riding a big wheel down the hall, her father and I trying to keep up with her IV pole and oxygen tank, or the ear to ear smile of a boy when I bring him a “prize” for being so brave, or the relief of the parents who come from the clinic “just to visit” because they’ve just been told their child is cancer free and no longer needs treatment.

I could go on and on with stories, both uplifting and depressing, of my years as a heme/onc nurse. But really, it’s the culmination of all those stories that keep me coming back every day. The humanity of what I do, knowing that every day I go to work, I am (hopefully) making a difference in someone’s life.  There’s really nothing better than that.  The other thing that keeps me coming back is my co-workers. I have probably experienced more emotional highs and lows with them than with anyone in my family, even my husband. Although I have never worked anywhere else, I guarantee you, there is no one like the women (and a few men) I have had the privilege to call my colleagues and friends throughout the years. Again, I could go on and on about how incredible these people are, but trust me when I say to you, there is no one better to share both the triumphs and hard days of this job.

My job was a lot easier as a 22 year old new grad than it is today, as a mother. I place myself in the situation of these parents probably too often and my heart aches for them and what they have to deal with, watching their child have cancer. But it is their reality, and in choosing this job, I have made it my reality too. As we promote Childhood Cancer Awareness Month, I hope it becomes a reality to everyone reading this.

Childhood Cancer, while very prevalent in my life, is unfortunately not relevant enough to receive the funding it needs. Even though I was very nervous to write this essay, it will be worth it if I can bring just the tiniest bit of awareness, so that I can experience many more of the families coming “just to visit.”

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In December 2007 our daughter Donna underwent a stem cell transplant as part of her cancer treatment for papillary meningioma.  That involved one week of high dose chemo followed by over three weeks in isolation.  The isolation is required, as the chemo effectively destroys the immune system, leaving Donna with no white blood cells to defend her body against infection.  During that period, three of our nurses who took care of Donna and us, body and spirit, drafted and choreographed the “White Blood Cell Dance,” as a means of raising our spirits and send Donna some happy and good energy.  The oncology nurses cared for the whole family, not just Donna.  They treat the whole child, not just their cancer. They are amazing.

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Today, Friday, September 5, 2014, marks the annual Eric & Kathy Radiothon for Lurie Children’s Hospital of Chicago — the hospital where Donna was treated and where Libby works.  If you would like to make a donation to help this amazing hospital continue the important work they do, please consider a donation to honor the oncology RNs.  Tell ’em Donna sent you.  You can donate online HERE, or call the number listed below.

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  Today’s blogger contributed two posts and I couldn’t choose, so am posting both.  Read and you will see why.

By Maya

This story is not a diagnosis story, it’s a maintenance story. Last year my mom, Rachel, told my diagnosis story.  My name is Maya and I am 13 years old. I was diagnosed with Acute Lymphoblastic Leukemia when I was 11.

Maintenance? Not a lot of people are familiar with what maintenance is. It’s the longest stage of treatment for leukemia that comes after several months of intense chemotherapy. Every month you go in to clinic for a check-up, and some months you have a spinal tap.  There are a lot of pills too. Here’s the catch though, if you have a fever you have to go to the ER to get checked for an infection.

For me, maintenance is bittersweet. You have a month of freedom uninterrupted by doctors’ appointments or hospital visits (if you’re lucky). When that month ends, it feels as if it went by so fast, and then reality comes back to remind you you’re not done with treatment yet.

When I go back to clinic I get very upset because it reminds me that I’m sick. Not that I ever really forget, but it’s hard to know that you’re going back. Chemo is the worst part, in my opinion.

Some kids hate the blood draw, some hate spinal taps, but I don’t really mind those. Chemo to me not only makes me feel horrible inside, it also tastes horrible. Guess what else? Besides the IV chemo I get at clinic, I take chemo orally every day. And once a week I have to take an extra chemo at night that makes me nauseous and makes me feel crummy the next day. On the weekends, I have to take antibiotics. And for five days after my clinic visit every month I have to take steroids, which make you retain water weight and make you feel hungry and moody.

The medicine isn’t the only bad part either.  You have to wash your hands or carry around hand sanitizer consistently, making sure you aren’t exposed to germs.  And you get tired more easily because your blood count isn’t totally back to normal. It’s hard for me to do things like jump, run, climb, and keep up with my siblings because I get chemo that affects my legs.

Losing my hair was one of the worst parts, I felt ugly and alone. Sometimes it’s hard to meet new people too because I’m self-conscious about having cancer. I don’t know how people are going to react to it. These things are hard to face, but even on the worst of days, I try to find something positive.

I like to think that with everything bad that comes with maintenance, I can find a good thing. My family, friends, and community have been wonderfully supportive. There is a big St. Baldrick’s event in my town every year and my middle school also had a childhood cancer awareness assembly last year in September for me.  I’ve gotten to go to a camp for kids with cancer twice and also to Park City, Utah for a ski trip with a bunch of other kids with cancer. It was so cool to see that I wasn’t alone and how much everyone understood each other. This summer I even was able to go on vacation to Florida with my family for the first time in two years to a retreat for families with a kid with cancer. This was probably one of the most memorable summers of my lifetime.

Throughout maintenance, I’ve been able to go to school normally, usually missing only one day a week. I’ve also made a lot of new friends this year, in and out of school. I feel that my friends have been really important in this stage with keeping me positive and understanding when I can’t do things. My friends always keep in touch with me when I’m on chemo or have to go to clinic. Even at school they check their phones for texts at their lockers and my teachers are okay with them checking on me. It makes me feel so lucky to have such amazing friends and such great teachers.

I love having a month to live outside of hospital walls, like nothing ever happened. Maintenance is a little taste of freedom before I finish treatment, almost like it’s preparing me for when I’m done.

I think the most important thing that this experience has taught me is that with each day, there is always a bright side to look on.

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Being diagnosed as a kid makes you grow up fast. You have to be mature and strong and part of my childhood kind of flew by because of that. My mom made sure that we stretched my childhood out. Cancer sometimes makes me very depressed when I think about it too hard. My mom always talks to me about it and helps me stay positive.

My mom has done everything possible to make me happy throughout this experience, and she is probably the person I’m closest to. This sounds weird, but my mom is my best friend. I can tell her anything. I love everyone in my family just as much as my mom, but my mom and I have spent so much time together since I got sick that we’ve created a special bond.

When I was first diagnosed, my mom slept on my floor for 58 days straight. She stayed home with me almost every day for about 7 months. She still takes me to the hospital every single time I have a clinic appointment. We sing along to the radio and play games during the 2-3 hour drive to the hospital. I will always remember the times, both good and bad, that we’ve spent together.

My mom would do anything for me. During my inpatient stays in the hospital, she slept next to me and would run down to the gift shop or restaurant to get me whatever I needed. When I was on steroids, she would get whatever I craved. Like when I wouldn’t eat anything except for Olive Garden breadsticks and she would drive across town multiple times in a day to get them. My mom even woke up in the middle of the night and got me food when I needed it. She also carried me when I couldn’t walk and cleaned up my vomit.

She is my hero.

Together my mom and I, along with my family, have raised over $20,000 dollars for cancer research funding and patient care. I love the feeling of knowing that I might have made a difference for someone who is going through what I went through. I want to start a foundation to raise money for pediatric cancer research with my mom someday. I also want to write a book with her someday.

My mom is my role model; I hope to be just like her when I grow up. I’m very lucky to have the mom that I do. I don’t feel like I say it enough, but thank you, mom. If I had a dollar for everything that you’ve done for me I would be the richest person on earth.

This is dedicated to my mom, Rachel.

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So grateful to Maya for lending her unique perspective.  And so impressed with her writing.  Her parents are raising an amazing kid.

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