“Knowing everything that I know about cancer, I would, in a heartbeat, take any kind of adult cancer—no matter how nasty and aggressive the disease and treatment—over any cancer diagnosis and any chemotherapy for either of my daughters, future grandchildren” Unlike most of us in the childhood cancer community, Laurie, a mother of 2, has not had her membership card pre-punched, but she has rolled up her sleeves and is pitching in. She is exactly what we need to create awareness beyond our own limitations. Please welcome her, already a member of the Coalition Against Childhood Cancer, to our community. Thank you Laurie O.! – Four Square Team Captain
I had intended to have my next post be about the childhood cancer fundraising event that I am planning in the Fall of 2014, but I have an overwhelming need to chime in on this whole gold versus pink thing. In an ideal world, I would be able to be all about gold in September and pink in October, but the “Pinkies” keep encroaching into the golden time so I have found that it is making me pick sides. I’m not happy about it.
To preface it all, even though I have never proactively sought to be different, I have always been one of those square pegs trying to fit into a round hole. For example, I am very much a tomboy and am most recognizable and comfortable wearing a baseball hat and ponytail, yet my favorite color is girly-girl pink and I gravitate toward anything pink. Following that theme, I am a pharmacist who chose to go to pharmacy school (nobody forced me into it) but I never intended to be a traditional pharmacist.
Pharmacy school was a way for me to learn about cancer and cancer drugs and to gain an understanding of what happened to my maternal grandmother. I highly doubt that I would have a career in the cancer field if it were not for her dying of metastatic breast cancer when I was in the 7th grade. She was initially diagnosed in her late 60s, was cancer-free for a few years, and then recurred in the other breast in her early 70s. She died in 1988, at age 74.
I remember an incredible amount of details regarding grandma’s second and last bout with breast cancer. The topic of “cancer” was so taboo that, in fact, no one in the family was allowed to even mutter the word around my grandmother because in her mind, cancer was a punishment from God and something to be ashamed of. I have no idea where she got that from. I vividly remember my grandma hanging up the phone on mom the first time my mom dared to say “cancer”, I remember seeing her pitch black & blue chest from the radiation treatments as I pretended to look away, and I remember grandma saying goodbye to me the day before she died but thinking I was someone else (as she was hallucinating from her brain metastases). I also remember that, around the same time my grandma died, my mom’s second cousin (who was her grade-school buddy) passed away from breast cancer at age 40, leaving behind 6 children. Around the very same time, my mom had a suspicious mass detected in one of her breasts and had to have it surgically removed. It was benign, thank goodness, but I remember her raw fear and worry and how she locked herself in the bathroom to cry. I went through those very same emotions in 2007, when I had a very firm pea-sized breast lump detected during the first trimester of my first pregnancy, which was benign but caused me great angst given my family history. I was devastated, fully expecting it to be cancer as I endured lots of waiting.
To date, my family history of cancer includes not only breast cancer, but also the rare uterine MMMT/carcinosarcoma that took my mom, acute myeloid leukemia (AML) that took my maternal grandfather, and colon cancer. Despite my efforts to stay fit and in good health, I have a really good chance of being diagnosed with cancer in my lifetime, more so than the 1 in 3 odds for women in general. I’ve been tested for genetic mutations in BRCA1/2 (breast cancer genes that, when mutated, increase the risk of not only breast cancer but also many other cancers) and had none detected, but I would still bet that my breast cancer odds are higher than the often cited 1 in 8.
So here I am, it is September 2013 and I’m alive and well. I have a history of adult family members dying from breast cancer but have 2 healthy daughters, and I am rejecting pink to go GOLD and asking others to join me? YEP, that’s right! In my eyes, heart, and mind, pediatric cancer research should be a higher priority than adult cancer research. Seriously, how can I possibly be more worried about adult cancers, even those that have taken my own family members, when there are (1) children who have not and will not even make it out of childhood and (2) children who may be lucky enough to survive cancer yet are more likely than not to be left with permanent physical and/or emotional scars and disabilities. Knowing everything that I know about cancer, I would in a heartbeat take any kind of adult cancer—no matter how nasty and aggressive the disease and treatment—over any cancer diagnosis and any chemotherapy for either of my daughters, future grandchildren whom I hopefully will meet someday, future great-grandchildren whom I will never meet, and so on.
Overall, I just cannot understand and cannot accept that pediatric cancer research is not THE priority of cancer priorities, so I have opted to join the childhood cancer community to do my part. But it is very obvious again, that I am that round peg and not the typical addition to the childhood cancer awareness community. I have met quite a few people over the past few weeks at different family/kid-focused childhood cancer events. I brought my 5 year-old daughter, Macy, along with me in my travels. As soon as I mentioned my plans to start a foundation and do fundraising events for my local cancer center, I noticed that the first thing that people did next was look directly at my daughter. Everyone automatically thinks that she must be a cancer patient, but she is not.
I have to ask: Should it matter—whether or not I have had childhood cancer, or if my own children have had cancer—if my mission is to help kids with cancer and I have the passion to do so? (Editor’s note here: If our community requires that we all must have suffered to join and help, we will never grow and achieve our dreams of making childhood cancer a national priority. Our “club” must never become exclusive.)
Sometimes I succeed and sometimes I fail, but it is never for lack of trying. Yet I know all too well that there are times when hard work is not enough to succeed, forcing a concession that it is time to “Let it go and let it be”. As I have not personally dealt with childhood cancer, I have already faced some unique barriers and challenges in trying to join this community, and I know there are many more trying days to come. This is the one time in my life, however, that “Let it go and let it be” does not apply to me and is simply not an option. I am dedicated to helping kids with cancer and to raising the much needed funds that will lead to much better treatments, and I am here to stay and am bringing others into this with me.
So as for pink vs GOLD, I am tabling the pink and going GOLD today, tomorrow, during October, and forever and always—no matter what happens to me in the future. In the battle of GOLD versus pink, I pick the kids and encourage all adults to do the same.
I have to say, that GOLD is a great color for the childhood cancer community to have because of the BLING factor, let’s exploit the heck out of it by making it cool and hip for people of all ages while spreading awareness. In my eyes, putting a little bit of light-hearted fun into the equation provides a way to balance out the inherent sadness that is associated with the topic of childhood cancer, likely a major contributor to why people in my general community shy away from joining this fight. I think an “Embrace your inner bling and go GOLD” campaign is in order! The gaudier the better, the more obnoxious the better—even for a tomboy like me.
Did you know and did you hear—that GOLD is the new pink?!! True story, spread the word and take care until next time…
Author: Laurie Orloski
What’s MMMT got to do with it?
Absolutely phenomenal article!! Thank you for putting my very thoughts into words!!! I have been affected by childhood cancer, as my son was born with Neuroblastoma. And I have always felt that people shy away from it unless affected by it directly. I am SO VERY GLAD to see someone stepping up!!!! Thank you from the bottom of my heart!! (And thanks for the pic of BabaFlav! I’d forgotten about that pic!!!)
Thanks Kris, getting involved is the least I can do! I have spoken with LOTS of people in the past few months, it’s been interesting. Yes, I agree, a lot of people do shy away from the topic….and will probably be avoiding me like the plague, which is quite OK by me. However, there are others out there who are just like me, who genuinely want to help and do very much “get it” even though they have not been dealt it first-hand. I keep telling people this, like a broken record…that (as you all know) “most of the effort to raise awareness and research funds for childhood cancer is led by parents who have had personal experience with childhood cancer, many of whom have already lost their own children, and they should not have to shoulder that burden alone so I have decided to help them and have my kids do their part too. Kids should be helping kids with cancer”. Overall, my motto seems to be resonating, and I am accumulating a nice bunch of brand-new volunteers to this cause(!!) to balance out the avoiders…it is just very much a one-person-at-a-time thing. Maybe it should be easier, but per the words of one Elton John… “I’m banking on a chance that we believe / That good can still control the hearts of men” [and women, and children of all ages too!!]
Great article, and the fight needs more people from the “outside” who understand truly the plight that we all face in the community. Thank you.
Thanks for writing such a great piece, Laurie. And even more so for being committed to changing the equation even without being directly affected by pediatric cancer.
Fantastic article, Laurie! Thank you for entering this community on your own accord and not because you have to be here. I unfortunately became a member because one day in May, 2010, my son became one of the 46, and a short 15 months later in August 2011, he became one of the 7. It troubles me that prior to this, I never really gave Pediatric Cancer much thought and was one of the many unaware people jumping on the Pink bandwagon, buying pink branded products etc etc. Raising awareness and getting more research $ directed towards Pediatric Cancers is a huge undertaking, but working together, I think we will ultimately make a huge difference.
Laurie a great article and thank you, you are indeed unique and not because you cast yourself as a Tomboy. We lost a grandson to AT/RT and I kick myself everyday because I was part of the blissfully ignorant community. We gave faithfully to St. Jude’s for decades and assumed that between them ACS, the federal government and others everything that could be done for pediatric cancer was being done. We were stunned to learn how wrong we were and the infamous words to Congress by the idiot in charge of the National Cancer Institute, “we could do more but without additional funding its unlikely” will haunt me forever.
We lost our sweet Declan to pediatric cancer and today we fight for other children; yet, we feel that we are constantly hitting our heads against a brick wall, inflicting more pain, if that is possible. Losing a child is something you never get over, it never gets easier, you never forget for one minute of the day, true joy will always be illusive. As I struggle with my own grief, I also agonize for my big-hearted son, what he, his wife and Declan’s brothers are dealing with and will deal with for the rest of their lives.
Fighting for awareness, more funding for research and more cures to save other children is what we do because of Declan, the many children we met along the way of Declan’s Journey and the many brave children we have met since. This fight is lonely and we don’t understand it. People like you are rare! After awhile you begin to feel like a leper. Many people that have never dealt with this don’t support us anymore, have started to avoid us and have “unfriended” us because they don’t want to hear about pediatric cancer. These are good people they just don’t want to hear it, ignorance is bliss, but most of them aren’t ignorant about this subject anymore and that makes it even more painful for us.
People showed up in the beginning to support this cause because of Declan, but that support has waned exponentially. We cannot afford for people that obviously now understand this battle, the what and why to turn away. Yet, instead of supporting this cause they are slinking away hoping we don’t notice, but we do.
This is so discouraging and incredibly painful, more loss, because if people who truly understand this battle aren’t outraged and don’t want to fight for change, what hope do we have? We don’t expect our family, friends and neighbors, people that are in the know, to be there every minute of every day, but we do expect them to support us with our letter writing campaigns, to SHARE our messages, to answer our calls for action, to show up at CUREFEST, but they aren’t and we notice.
On top of all of this it is so hard to rationalize, could I have possibly been one of those people that says, gosh this is so sad, we feel so bad for those people but this is not my problem and we don’t want to hear about it anymore. I pray that I would never, have never been and will never be that kind of person, that I would ignore this battle for kids. Because in the end, it is not about our pain, or the loss of friends, it is about our society standing together for kids and demanding what is right – that funding pediatric cancer research be a PRIORITY for our society. That we adequately fund the research that will give our kids pediatric treatments and cures that are developed for kids and not the guessing game of downsizing adult protocols in the burn and poison techniques that cause unnecessary suffering, irreparable harm and death of children battling cancer.
We think that this is what our society is made of, we will do everything in our power to take care of our children, we do what is best for them, we sacrifice for them, and we always put their needs before our own. Isn’t that right, or, am I blissfully clueless again.
Hi Donna, I lost my mom in a very tragic way, I was taking care of her and a 1 year-old at the same time and was so heartbroken when she passed away. Family and friends, including some of her supposed friends, fled away from me VERY quickly. Nobody wanted to hear anything about it, or would care to even ask how I was doing…even in the immediate aftermath. It was and still is unbelievable. I truly thought that it would have to be WAY different for those who lose a child or grandchild to cancer, but I am hearing from you and others that it is even worse….I was very surprised by that, to hear that many people would turn their backs, whether it be sooner or later. That makes me truly angry yet motivates me to be part of this community. Honestly, I wish that all of you who have endured the heartache could just go on a life-long vacation of fun instead of having to put your energy toward raising awareness and research funding for childhood cancer, yet I know that it would be impossible to feel that type of carefree living without your kids and grandkids there with you. So all I can do is join you… I am going to do everything I can to get others like me to help, and to get their healthy kids to help. Wild horses could not drag me away, I am no flight risk!! Despite my own personal experience with my mom, I am optimistic that there are others who will join me for the long-haul to help the kids too. For me, this is no “misery loves company”…this is me seeing an opportunity to make a difference in a cause that should be of utmost importance to everyone…as children are the future for each and every person, regardless of if they are a mom, dad, grandparent, or none of the above. That should be pointing out the obvious, right? Maybe some just need a reminder!
Thank you Thank you Thank you!
You explained it perfect!
. Childhood cancer has not affected me personally but I learned about it a few years ago. Since then I have raised money and shaved my head for St. Baldrick’s, volunteer for several Childhood cancer foundations in my area and do some public speaking to schools about Childhood cancer Advocacy. This is what I’m supposed to do with my life. When you explain this to some people they just can’t understand “why”? Why do you do this?…why throw yourself into such a “sad, depressing world”? Then you end up wanting to scream in their face and say “WAKE UP”!!!!!! This could happen to your family. Why bury your head in the sand.
Again, Thank you!
Thank you. As the mom of a childhood cancer survivor, who was diagnosed at age 3 and is now, 11 and well, I applaud you. As I like to say, if you would have told me, at the beginning of 2005, that before the end of the year, I’d be on my knees, begging God to give me cancer, I would have told you that you were a fool.
But that’s how it went. Me, on my knees, praying that God would take the cancer from my shy, innocent 3 year old and give it to me instead. I could handle it . I could take in on, win or lose. But she, she was so young, so pure, so innocent. And it was so very unfair.
There is nothing in this world that can hit you harder in the stomach than hearing that your precious child has cancer and may not survive to see her 4th birthday.
The scars she bears are not only physical. She had chemotherapy into her spinal fluid, the same fluid that surrounds her brain, while her 3 year old brain was still developing, which means that she now has problems learning. Oh and thanks to cancer, she’s very anxious as well.
It astounds me that people in America say that they care about the future of our children, all children, and yet they sit by and let research for Childhood cancer get pennies on the dollar of the money raised for cancer research.
Thank you for going GOLD!
Thank you Marie, for sharing your mother-daughter struggle with the diagnosis and the aftermath of treatment. When I read this, my first thought was how your anguish really comes through in your words, even though the years have passed. I hope that your daughter will continue to heal and she gets over the hurdles, and that it all will wind up making her a super strong lady in the long run…like mother like daughter! Thanks again for sharing your story, it really touched me–Laurie
As a Long Term Survivor of Childhood cancer and a staunch Advocate in the fight, I want to say a big resounding THANK YOU! Thank you for NOT turning your head, thank you for stepping INTO instead of AWAY FROM this fight, thank you for getting your children involved NOW while they are healthy (and I truly hope they stay that way FOREVER), THANK YOU SO MUCH!!
I have had my own family members who saw what I went through as a baby (8 1/2 Months of Age upon diagnosis) tell me that they have a hard time looking at my posts on Facebook because they’re all TOO SAD and TOO DEPRESSING. I’ve told them “If you THINK looking at the posts is SAD and DEPRESSING, imagine having to LIVE life that way daily!” I explain that I am fighting tooth and nail to keep EXACTLY THAT SITUATION from happening because I don’t want them to have to go through it first hand!! Not now, not down the road, not EVER!!
I have some amazing friends (family by choice) who have stepped up and become such an integral part of this battle. I hold such a deep intense respect and love for them that I’m pretty sure they aren’t even entirely aware of just how much I think their involvement means to me. My family is coast to coast and worldwide!!
Thank you again and LET’S CRANK UP THE NOISE WHILE WE GO GOLD FOR OCTOBER AND ALL YEAR ROUND…because THE KIDS & FAMILIES ALL DESERVE SO MUCH MORE & SO MUCH BETTER than they’re getting right now!!
Long Term Survivor (45 Years 8 Months & Counting)
Stage IV High Risk Neuroblastoma (dx 01.22.68 @ 8 1/2 Months of Age)
4 Time Shavee ’10, ’11, ’12, ’13 ~ 46 Mommas Shave for the Brave/St. Baldrick’s Foundation ~
Hi Carla, thank you for the comments here and for contacting me on FB. I loved your writing, would you mind if we were to share it here? My mom went from never sick and apparently 100% healthy to gone from a rare tumor in 9 months, so I have learned firsthand that it is important to be productive while we are all in a state of good health, because one never knows when that might change. For me, any day without a loved one battling cancer is a good day, it takes a lot more to get me into a tizzy than it used to, no need to fret the small stuff. As for you and me, we must join forces and work together to get the GOLD mainstream and get everyone to bring on the BLING for the kids, add me to your global family 🙂
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