Author: Sheila Quirke

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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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 Pauline Grady

I’ve been thinking a lot lately.  I’ve come to a point in this journey that I am feeling a little lost.  It’s a common issue.  Sam is almost done with treatment, but where does this leave me?  Where does this leave a woman, a mother who worked full time prior to her son getting sick?

I started thinking about the different emotions I have felt since the beginning.  How lost I was, how much I felt that I had found a side of myself that I never knew existed and how I am now feeling lost again.  Lost, found, lost.  It is amplified when I meet the newer moms.  A common phrase I hear when I meet the new moms is “I don’t know how I am going to do this.”  Usually I only have a few minutes to talk to the new moms so my answer is usually “you get through it because you have to get through it, and you will.”  I’ve been told that numerous times when I was sure I couldn’t “get through it” and I’m sure I will continue to hear those words.

As we get closer to Sam’s last chemo visit, Sam’s last chemo pills, Sam’s last steroid pulse, I think about what I would say if I had the time to sit down and talk for a few hours with the newer moms.

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Dear New Cancer Mom,

I’m sorry.  I am sorry that you are part of this group.  I am sorry you now have the title of cancer mom.  Your life has changed.  In one split second your world just fell apart.  Allow yourself to cry, it will make you feel better.  Allow yourself to kick and scream and have a tantrum, let it take all your energy, because there are somedays that crying is all you can do for the day.  The fog will lift, I promise.  The feeling you get when you walk into a store or a restaurant, that feeling that everything is surreal, that you want to turn around and walk out because everyone in that place is happy and laughing, it will go away.  In place of that, you will look at people that are constantly unhappy with their lives and remind them of how precious life is.

Stay positive, things do get better, but be a realist too.  Don’t allow people to make you think that your anxiety and worry is not justified.  It is.  Your child was diagnosed with cancer.  It’s a very scary world to be placed in.  Watching your child go through this and watching other children, it’s not something you wish upon anyone….but when you witness your own child and all the other children continually fighting, well….it will change your life.

Document your journey.  Whether it be a journal, a blog, pictures, videos.  Document it.  People may ask “why would you want to document this part of your life.”  It’s a reminder my friends, a reminder of the battle.  Write your child a letter at different times of their treatment so they see the battle in your eyes, as a mom.

There are people that will support you the entire time, and others that just can’t keep up, that are tired of altering their life to accomodate you.  Those are the ones who don’t understantd.  There is no need for you to explain, so don’t.  You have a sick child, there is no explanation needed.  Move forward and don’t hate them for it.  It’s just a reminder of how difficult this life is and that some people chose to step back when things get to rough.

If you have a spouse, spend time with them alone as much as possible, go out on dates when you are able to and take a nap when the opportunity is there.  Don’t complain to much about the little things, it’s not worth it.  Pay it forward,  there are many, many people that will help you.  Some people that you don’t even know.

Swallow your pride and ask for help when needed.  Surround yourself with people that understand and know what you are going through.  No matter how much others claim to know what you are going through, they don’t.  Perhaps they sympathize with us, but they can never empathize.

If the opportunity arises, take sometime for yourself.  Even if it’s a ride in the car by yourself, do it.  Don’t feel guilty.  You are giving 110% of yourself to help save your child.  The worrying, anxiety and lack of sleep is overwhelmingly exhausting.  If there is anything that has caught me off guard this entire 3 years is the exhaustion that comes with the sleepless nights, the hospitalizations, the worrying, the crying and just the fight.

Regardless of the type of cancer, the battle is long and difficult.  Regardless of what others say, this will be a part of your life forever.  Once a Cancer Mom, always a Cancer Mom.  Hang in there.  Keep moving forward.  Head up, chin up.  #onward

Sincerely,

A Cancer Mom

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This post originally appeared in Pauline’s blog about her son’s cancer treatment, chemoanddonuts.  Pauline’s son, Sam, finished his leukemia chemo protocol yesterday (!), but she will always and forever remain a Cancer Mom.  

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