I met Lauren over lunch at Applebee’s in Henrietta, New York. The first thing I noticed about Lauren was her tremendous presence and passion for the cause she is so emotionally and physically invested in; Melissa’s Living Legacy Teen Cancer Foundation. “All of the important things I now know about life, I learned from Melissa,” she attests. Currently, Lauren is living up to the promise she made to her daughter. A promise that came from Melissa’s words, “If you have learned anything from me through all of this, do something with it to make a difference – to make things better.” That profound statement fuels the woman behind this internationally recognized resource for Teens Living with Cancer. ~JWN
VIP: So, what do you do?
LS: My first career, about a hundred years ago, was in education. I was a Special Education teacher. I had a very short stint teaching students with disabilities and then I had my four children very close together. When I was ready to go back to work, I said, “I don’t think I want to work with kids anymore.” Four little ones were enough to take me out of that.
I transitioned to teaching at the college level in a few different capacities; business writing, English, and others. Skipping forward from my child rearing years to more recently...I found my way into corporate training. I started at PayChex and ultimately ended up being responsible for all of their management and leadership training. Then I jumped ship in ’95 to start my own management consulting and training company. It’s a one person operation, which is what I always wanted. I needed to be more flexible with my time as I had four teenagers at the time.
So, that is what I’ve been doing since ’95; helping organizations going through change and aligning them with their new business practices. I do the bulk of the management training myself. So, that was my full time schtick until Melissa got sick. She was diagnosed in 1998.
The experience when Melissa was sick was transforming to say the least. It really changed the direction of my life and forever made our family stronger and more appreciative of every single minute that we have together. Melissa was an extraordinary kid. I can take my mother’s hat off and still say she was a special girl. She became my life teacher; teaching me everything I know that is important today like where we need to spend our energy and how we need to live these days that we have.
If you read her story, then you know the promise she roped me into to do something. My little prayer to Melissa everyday is, “Honey, just don’t let me screw this up today. Help me just get through today without making any major blunders.”
When Melissa was sick, I noticed that there was a serious lack of services for teenagers. When you think about our current health care system; we have pediatric medicine and adult care medicine but our teenagers don’t fit into either one of those systems.
Ten years ago when Melissa was sick, if you were to Google, “teen cancer,” there was nothing; no resources at all to an adolescent’s lifestyle, let alone their medical needs. So, when I tried to figure out what in the world I was going to do with this promise I made to my daughter, I thought the best way to bridge that gap was to find a way to provide age appropriate resources and support for adolescents that would enhance the quality of their lives. That is really our mission.
None of our resources, other than our advocacy efforts, go towards cancer research. Simply put, there are deeper pockets and other organizations that do that. My focus is on how we help make this experience as meaningful as possible, whether our kids live or die. Sadly, about 50% of adolescents diagnosed with cancer do not survive. Of all the other people that get cancer, it is our children in the middle, between the ages of about 15 to 30, that show the least improvement in cure rates over the last 25 years.
VIP: Is that because of the current lack of focus on that age range?
LS: It is a couple things. Some answers are unknown but we know that from a clinical perspective, the kind of cancers that adolescents get are just tough. They are very sticky cancers that are tough to cure. There is beginning to be some research on the pathological differences because there is such dramatic change in terms of development at that time. Everything is moving so rapidly that that may contribute to the aggressiveness of the cancer.
Other theories stem from the fact that many teens aren’t diagnosed until their disease is very advanced. That’s because teenagers are teenagers. You get a high school athlete that has pain in his leg and he says, “Oh, I just sprained it in soccer practice.” Parents aren’t examining their children’s bodies anymore and teens think they are invincible. Then, it becomes so serious. So, we know late diagnosis is a reason.
One of the most poignant examples of that is a teen we worked with from Brighton High School. For years he had been complaining about this nagging pain in his side. His mother, every time she took him to the doctor, has insisted that the pediatrician look at it and do something about it.
The doctor always insisted that it was just a sports injury because he was a football player and actor. Give him some Tylenol and he’ll be fine. He went off to college in Boston and ended up checking himself into the emergency room one night when the pain was too overwhelming. They diagnosed him with stage four lymphoma. The tumor was so aggressive and so large that it had eaten two of his ribs. He died six months later.
We know that pediatricians are simply untrained in looking for cancer amongst children and teens because “kids aren’t supposed to get cancer.” So, that is a third reason. We need to increase awareness amongst professionals.
For all of those reasons we are finding our kids in the middle in very poor shape. In the last twenty years we have seen enormous resources directed at childhood cancer, and thank goodness. Now childhood cancer has an 75-80% survival rate. On the other end of the scale, there has been a tremendous improvement in adult survival rates. Thank goodness! But, those research dollars have not been spent at all, until about two years ago, on the adolescents.
You’re dealing with students who have unique physical and psychological development. So, our goal at Melissa’s Living Legacy Foundation is to bridge that gap using social services and support. Whether they survive or not, we want to improve their quality of life while they are still here.
So, what are some of our key initiatives? We have three.
One is to provide age appropriate resources for our teens; most notably through our website, TeensLivingWithCancer.org. It averages about 90,000 hits per week. Giving the niche population that we’re targeting, we think that is high activity.
The most recent data from the National Cancer Institute says there are about 12,000 kids between the ages of 12 and 24 that are diagnosed with cancer each year. Average treatment is about two years. Proportionate to the cancer world, that is a small amount. But, when you consider that 50% of those children don’t make it, times the potential contribution they can make over the course of their lifetime, the societal loss is HUGE.
The potential loss of our adolescents dying is striking, coupled with the fact that we take our kids diagnosed with cancer at a young age that are surviving. Thank goodness! But, they are surviving at a very high cost. Children treated at a young age are often treated with high doses of radiation to cure their disease, so they end up as teenagers with many disabilities and growth issues, major organ failures and body problems. There are many delayed effects. In our world, we consider those survivors of childhood cancer who now become teens with secondary health issues, still Teens Living With Cancer.
If you take a look at our kids in current treatment, plus childhood survivors, now our numbers are looking very big. An estimated number is about 70,000 young people who are either childhood cancer survivors or teens under treatment. That is one child in each graduating class in every school in the country.
From a purely economical standpoint, by the time a teen has reached 16 or 17, we have invested tons of community resources, financial and emotional investments, only to have that investment totally stripped away. So, the impact of adolescent cancer is so much greater than most people imagine.
When you see commercials on TV for St. Jude’s Hospital in Memphis, which is a fabulous cancer institute, what do you see? You see cute little bald four year olds. You don’t see a sixteen year old girl that is bald and has gained 60 pounds because of her steroid treatment. Now, she has hip dysplasia and hardware sticking out of her chest, trying to figure out how she is going to go to her high school prom.
All of that said, those are the challenges that we face. I’m very proud to say that we are beginning to bridge that gap. We have become in a very short time, an internationally known and respected provider of resources for teens with cancer. There is no other national organization, that I’m aware of, that focuses solely on adolescents.
When I started this little initiative, (formally established in 2001, launched the website in September 2002), most everybody gave me one of two responses; “We know this is a tough time for you Lauren and we know you want to do something to honor your daughter, but it will get better.” Those people I wanted to strangle. But, that only fueled me more. The second set of people said, “We believe there is a need, but you’ll never be able to do this. Let the big guys do it.” My feeling then and my feeling now is the same. I didn’t want our kids to be a page on the American Cancer Society website. I wanted a place that looked, smelled, and felt like a teenager. I don’t want them to play second billing. So, on we went. Being the person that I am, I said, “No,” just means not this way.
We got a website and then out of the blue I got a telephone call at home from a physician who identified himself as the Chair of the Adolescent and Young Adult Committee of this National Cancer Institute supported cooperative called the Children’s Oncology Group. They are a research cooperative that has over 200 hospitals affiliated with it. So, Dr. Archie Bleyer of the Anderson Cancer Center in Houston, Texas, says, “I heard about your project. We need to talk.”
We forged a strategic alliance with the Children’s Oncology Group which overnight gave us the seal of medical legitimacy and credibility, it gave us access to every pediatric hospital in the world, and most importantly, in the short term it gave us shared funding.
In addition to the website, we have produced a number of resources; an interactive CD-rom with links to the website. That we have distributed across the globe; United States, Canada, Austrailia, the UK, and New Zealand.
Now, we are producing an “End of Life” piece which is for teens that know they are dying. That is one of our thrusts.
Second, is improving the delivery of care to our kids. Most notably in that area, we have created a workshop for clinicians who treat teens, to help the multi-disciplinary teams that treat teens with cancer; physicians, nurses, social workers, psychiatrists, the whole crew. This helps them build relationships across the team for more effective communication.
We also know that another complication for teens is that they do not always adhere as best as they should to their treatment protocol and that compromises their care. So, we have a whole other initiative focused on clinician education; helping them understand the unique challenges of communicating with teens better.
Our new initiative is creating teen, brick-and-mortar type, help groups. These are great supplements to the Internet communities we have. The Rochester Chapter has their peer officers in place and is just getting going. We have laid the groundwork for the Syracuse Chapter and Buffalo is next.
Another area of focus is advocacy and to that end we have our partnership with the Children’s Oncology Group, but we are also a Chartered Member of the Lance Armstrong Foundation Young Adult Alliance which is a consortium of 25 to 30 other national organizations.
On Melissa’s Scholarship at the University of Pennsylvania:
You might remember reading in Melissa’s story that she wanted to be a nurse. When she told me she wanted to be a nurse, I couldn’t believe my ears. Melissa was a very intellectually gifted kid, very, very bright. I said, “Why would you settle to be a nurse? Why don’t you try to be a doctor?” They are two very different professions. Melissa knew the difference and was more interested in the one on one care.
She ended up at the University of Pennsylvania. We now offer a $10,000 award for a student entering their nursing school. Melissa defined the scholarship requirements before she died. Now, Doug and I go down to interview the candidates and pick the scholarship recipient.
Melissa’s Living Legacy Teen Cancer Foundation
Melissa’s Living Legacy Teen Cancer Foundation
3111 Winton Rd. S.
Rochester, NY 14623