I came into the childhood cancer community in 2013 as a member of the “general public”, having no personal connection to a child with cancer. My journey is different but not without appreciation for what cancer is and how devastating the journey can be, not only for the patient but also those who serve the role as primary caregiver. My mom always said that losing one’s parents makes you feel like an orphan, and she was right on point there. The pain of losing 2 parents by age 35 may pale in comparison to the pain of losing a child, but the pain and loss are enormous nonetheless. My mother was the second to go, right as I was starting my own family, after a 9-month battle with an exceptionally rare carcinosarcoma of the uterus. They are so rare that most oncologists will never see a case. When they do occur, they tend to occur in women with certain risk factors. My mom had none of those risk factors. Many cancers are actually explainable; the unexplainable, random ones (which include most pediatric tumors but also some unusual adult tumors) are just flat-out baffling. I just have to keep reminding myself that sometimes things happen for a reason.
When my mother was suddenly sidelined by cancer, my relationship with her transitioned from being a daughter to being a daughter-cologist, aka patient advocate. I have a professional background in cancer, so I took care of almost everything—getting second opinions, getting discharged from the hospital at the right time, getting her nausea/vomiting and pain medications adjusted, making decisions on an investigational treatment, asking questions, asking more questions. My mom didn’t have to worry about a thing, and she liked it that way. I let her make her own decisions; believe me though, she did not want to manage the rest. She was very sick from the time of diagnosis. When she would start getting upset about the possibility of dying, I would just transition into some sort of scientific discussion about tumor biology and data, yada yada. My intent was to get her mind into thinking “wow, how annoying is my daughter, why won’t she shut up” rather than thinking about dying. There were times in her journey when things weren’t going
right, when answers to questions weren’t making sense. And I knew enough to know that she was in big trouble. So I would speak up, I would ask questions that nobody would ever think to ask—very difficult questions. I fought for her life in a way that nobody else on the planet would. “I wish I had a daughter like that”, I would hear her nurses say, with genuine awe that I would jump through so many hoops for my mom despite having a baby at home. Of course I would, she was my mother and only living parent. She needed to be saved. In the end though, her tumor was too aggressive, there really wasn’t anything that could have been done to save her. At the same time, I left that cancer world feeling very disgusted, not only that she died but how she died. I could go on and on but I won’t, other than to say that sometimes things take a life of their own; sometimes things happen that are simply out of one’s control. Sometimes doing the right things isn’t good enough. Sometimes mistakes are made that cannot be undone. If she had had a different tumor, maybe she would have been OK, or maybe not.
When I came out of that fog and then the fog of having my second daughter, I felt this unrelenting pull to get involved in cancer awareness and advocacy—stemming from my ordeal with my mom. I kept thinking about children, but I had no personal experience to childhood cancer so wasn’t sure if/how to get involved. Back in 1997, I had spent 6 weeks at St. Jude as part of my oncology pharmacy training. I remember that most of the kids were extremely sick, being beaten down by their treatments, but that most were considered curable. Two children passed away with solid tumors during my 6-week stay. Those losses were devastating. They were the exception and not the rule. In a lot of adult cancers, certain types, death was the rule and not the exception (still is, in some cases).
From 1997-2013, I had fallen out of touch with pediatric cancer research, as my career wound up being focused on adult oncology; however, I had assumed that things must be really good now. In the year 2014, the era of novel targeted agents that began about a decade earlier, those exceptions must be even rarer. I thought that kids must be really benefiting from the numerous new biologic and targeted drugs that had entered the marketplace since 1998, from the time when Herceptin first came onto the scene for breast cancer. I knew that many of these targeted drugs had applicability to numerous cancers and was sure that they were being aggressively studied in childhood cancer.
Then I did some quick on-line searches, to gauge the state of pediatric cancer treatment, and found that nothing had changed at all since 1998. These new cancer drugs that I had been writing about for adults had not been making their way to children. Those kids whose bodies were being literally annihilated with chemotherapy in 1997, many undergoing bone marrow or stem cell transplants, were likely suffering some sort of long-term complications. Those very same regimens continued to be used today, in many cases. In the year 2014, there were still pediatric tumors that are regarded as terminal on diagnosis. Not only was my industry, the pharmaceutical industry, paying little to no attention to childhood cancer, but the American Cancer Society and the National Cancer Institute weren’t picking up the slack in any way shape or form. It takes a lot to shock me, but I was floored. How, in the year 2014, were treatments for childhood cancer stuck in circa-1970s and 1980s? How did this happen, and who let this happen?
For me, there was no going back. If I was going to give up time that I don’t even have to volunteer in the cancer world, I was going to devote it to raising awareness and research funding for childhood cancer.
What was I going to do exactly? Well, I had some big ideas but they were not doable on my own. Luckily I made my way to the Coalition Against Childhood cancer (CAC2), which was just in the process of forming. One person told me to talk to this person, that person told me to connect with another person and so on.
I started writing blogs here, from the perspective of the “informed general public”, but also made time to travel to the CAC2 Annual Summit, where I got to meet some of my comrades for the very first time. There was no way that I was going to miss the 2014 Congressional Childhood Cancer Caucus, and I made plans to attend CureFest the second year in the row.
Then, despite initially deeming it as spam, I got an e-mail invite from the White House for a closed-door meeting with pediatric cancer advocates. I seriously thought it was spam at first, but it seemed too specific. I thought those hackers were really smart. Then, after deeming it not spam, I just assumed it was some sort of mistake—but no, it was intended for me. I was humbled to have even made it onto the invite list and was not going to miss it, even though it would require some complicated travel logistics.
I won’t go into details now, about what I learned in those meetings in DC. I’ll write about those things later. I will just say that I feel a genuine sense of optimism that good things are going to come for children with cancer. That while there is a ton of work to be done, the door (actually multiple doors, those of pharma, the NCI, and the White House) has been kicked open—now as advocates, we need to open it wider and keep it wide open.
Anyhow, when I was at the CAC2 meeting and sitting in the Caucus and White House, I will admit to getting a tad emotional. The misty-eyed kind of emotion, and it is happening to me right now gosh darn it. I always say that I came into this community without a connection to a child with cancer, but I had a connection to another patient: my mom. In the time it takes to have a baby, her life was taken away in cruel fashion. Her journey, her awful journey, took me to a place where I am speaking up for kids with cancer. Sometimes things happen for a reason, right? The reality is, if I had not lost my mom and in the way that I did, I would not be in the childhood cancer community right now. It took a really weird tumor and a really unusual journey to get me here. In the end, I no longer consider myself a member of the “general public” but instead call myself a “childhood cancer advocate”. The last conversation I had with my mom, we joked about how her doctors hated me (some did not like questions), how she was proud of me for that, and how I missed my calling as a patient advocate. As it turns out, I did not miss my calling after all.
Author: Laurie Orloski
You are fighting the good fight! I just lost my son this summer at 6-1/2 weeks old to a rare and aggressive form of leukemia (only 40 known cases with only a few long survivors). Following his death, our friends organized a Light the Night team benefiting LLS. On the cancer fb groups, I began to learn how little money is directed at pediatric research. My anger in the situation became directed at this non-profit who showcased our friends beautiful daughter (also suffering from a different type of infant leukemia) on a billboard in our city. I realized how often cancer kids are used on promoting these fundraising events, but as is the case with LLS only 8 percent last year went to pediatric research. I had my friends halt their fundraising until we were able to confirm that by reaching a 10k goal would we then be allowed to direct our funds to pediatric research. Not that adults with leukemia don’t also deserve research, but it is so unfair to give an infant the same high dose chemo you give an adult. Prior to my sons illness I had no awareness to how devestating the long term side effects could be.
Keep on keeping on! And thanks!
Laurie, You have no idea how your blog has touched me. I too, lost my Mother to cancer three years ago and while she was in my home being treated by Hospice, we learned that my precious four year old Granddaughter had brain cancer. My Mom passed a few months later and then the fight began for Maddie . Two surgeries and two rounds of radiation and chemo, but she could not beat the odds and we lost her last Sept. It’s hard enough to lose a Grandchild, but to watch your Daughter and Son in Law go through this hell, is just heartbreaking. No parent should have to watch their child die because of lack of treatments. I will go to my grave advocating for childhood cancer and demanding more funds for research. Our children deserve better! Thank you for your support and I hope to meet you in the future. God bless, Leah Burns
Thank you Leah and Kelly for chiming in with your stories, both horrible to hear yet inspiring that you are keeping the fight going. With cancer, I always remind myself that it could always be worse … and that is when it strikes a child. The thought of a parent or grandparent going through what I did, as a daughter, is maddening! With my parents gone, my focus is the health and happiness of my daughters … although healthy to date, I know that the biggest disease threat to them is cancer. It is not Ebola or anything like that … cancer, the number 1 disease killer of American children. Yet most parents will turn a blind eye, even when they hear the stats about childhood cancer being random (and on the rise) and lack of research funding (meaning kids are being left behind), I see it in my own world … frustrating but fuels me to want to do more, not less. My attitude is … if nobody else will stand up and speak up, I will. I don’t believe that parents like Kelly and grandparents like Leah should have to shoulder the burden of raising awareness alone, so I’m in it to lend a hand in any way I can.