Don’t Stop Believin’ (or Running the 5Ks)
I remember coming home after school as a child, and, once or twice per year, my mom would have 25+ remittance envelopes laid out on the floor. They were colorful, professionally designed works of art from her favorite charities. She would write them all checks for the amount of money that coincided with her allegiance to their cause. Habitat for Humanity would get $25. Feed the Children might get $30. World Wildlife, $50. Audubon Society would get even more, until the charity that was bottle-feeding baby whales by hand was handsomely taken care of (you see the trend). Then one day it all stopped!
DOWNLOAD THE BULLETINSome nosey journalists in the late 90’s started trying to hold these mega-non-profits accountable, and people started finding out that some of their CEOs might take home a few million per year – totally unacceptable! As an 8-year old, I tried explaining to her the nuances of the CXO-level labor market, and how competition among elite visionary executives had driven the price to FMV (fair market value), but she would distract me with milk and cookies and I had no defense there.
But during that period of time and the advent of the internet, transparency and accountability within the “do-gooder” sector became a big deal. This heightened awareness gave birth to documentaries like Pink Ribbons, which “takes aim at the breast cancer movement and the corporations that benefit from its ubiquitous rosy symbol of awareness and action.” All of a sudden people started having legitimate concerns about the overlap of philanthropy and marketing – and especially in the pharmaceutical industry. We found out that it takes about a billion dollars to get a drug to market, and when it came to selling it, no expense was spared. Every conceivable opportunity to raise money for cancer research is taken: golf scrambles, cookbook sales, garage sales, turkey raffles, Little Black Dress Cocktail Parties, and the infamous 5K Race (at 5am).
We’re bombarded with marketing and the message that all we need to do is “race for a cure”, or wear a pink or blue ribbon to raise awareness, and if you’ll just forward this email to 10 friends, we can “win the war” on cancer. But are we winning? I think Americans have grown suspicious, if not totally cynical, at the never ending marketing machine that is cancer research.
You, I, Rufus and Chaka Khan need it now more than ever. Tell me somethin’ good.
Well, there are success stories. In fact, our own Noelle Childs is one. Last August she was diagnosed with chronic myelogenous leukemia (CML), a form of cancer that would have given her 3-5 years to live prior to 1998 – but there was treatment because human beings care enough to run those 5K’s, and wear those Little Black Dresses to mixers they’d rather not attend.
The American Cancer Society reports that in 2014, there will be over 5,900 new cases of CML diagnosed in the US alone. So a billion dollars – is it worth it? I don’t know many who would argue that. When you think about 5,900 Americans either getting their death sentence, or finding out there’s hope for them, you’ll lace up those old running shoes, slap on that knee brace, and gut it out for cancer. Because showing up for that race or cocktail party can be a very spiritual thing. Spending our time, money and attention to show those around us that we care is an act of love.
We sat down with Noelle and she told her story. This is how cancer, and the actions of the Leukemia & Lymphoma Society changed her life (and saved it). So before we huff and puff about some executive director making too much money, please consider that these organizations save thousands of human lives – like Noelle’s – every day (and possibly some baby whales benefit too).
Damian: So something happened in your life that changed its path. What was that?
Noelle Childs: Last August I’d not been feeling well – basically for an entire year. I had colds all the time. I’d get winded walking up the stairs. I just knew something wasn’t right. So my family doctor ran some blood tests and on that same day, she called me and said it looked like I had leukemia.
DH: Wow. That’s shocking. What then?
NC: I went to the hospital immediately. They ran a bunch of tests, and I ended up staying there for a few days. I was on the verge of needing a blood transfusion, but they were unsure of what to do because of the problems with diagnosis. Apparently there are a couple different types of leukemia, so they wanted to make sure they were diagnosing me with the right one. They started asking me if I had any siblings for a bone marrow transplant. That’s when I knew this was pretty serious.
DH: How did you react to that?
NC: I remember sitting in the hospital looking at my husband, saying ‘we’re going to need a miracle here.’ I had three little kids under the age of 4. I hadn’t even celebrated my 10 year anniversary with my husband yet… and you hear ‘leukemia’ and it’s such a crushing thing to hear. So after a few days they found out I had chronic myelogenous leukemia (CML).
DH: Is there treatment?
NC: There was a drug developed 15 years ago that controls the illness, and it allows me to live a normal life. Thank God too, because had this drug not been developed, I would have had about 3-4 years to live. But now I’ll have a normal life expectancy.
DH: So what was going through your head, as it related to your mortality? Like, expectations versus your new reality…
NC: I remember being in shock for the first couple days. It was very, very scary. I don’t think I’d prayed more during the first 24 hours than I had my entire life. I was begging God for a miracle.
DH: So leukemia is a weird type of cancer – how did you explain it to your children?
NC: Well, they know I’m ‘sick’, because I’m gone a lot. I’m on a clinical trial that’s taking place in Tampa. They’re young so they don’t know the details yet, but if I am on this medication for the rest of my life, eventually they’ll find out.
DH: So there’s no cure for this?
NC: Not as of yet, but I’m on this clinical trial with Moffitt Cancer Center. The drug has been shown to work in the lab. I’m also on an additional chemo drug, and the hope is that it will eradicate all cancer cells. I had a bone biopsy in May and my numbers have greatly improved since the one I had in February, but it’s not in full remission yet. They’re hoping that it will have been in full remission by August, but as of now, this is the deal.
DH: That would be great. And back to the question from before – and I don’t mean to be morbid, but were you thinking, ‘Oh my gosh, I’m going to die. What will happen to my family?’
NC: That was my first thought when I got the diagnosis. All these thoughts were running through my head. I’m not going to see my kids go to kindergarten. I’m never going to see them get married or have kids of their own. I kept saying ‘This can’t happen. I have 3 kids. I have 3 kids…’
DH: What were some of your atypical thoughts about potentially missing out on your future? Like, for instance, I want to see how good knee replacements will be in 30 years. Did you have any of those thoughts?
NC: I mean, not really. Again, the shock was so intense that all I could think about was my family and what the diagnosis might be. I couldn’t even sleep in the hospital. They kept taking blood every couple hours so it was exhausting.
DH: Okay, so tell me about your kids.
NC: Well, we have 4-year old twins, a little boy and a girl. And then we have a little guy who’s two and a half. So it’s always crazy around our house, but they are the love of my life – besides my husband, of course. They sort of know what’s going on, and in a way, other than giving birth to them, this experience has been the most spiritual thing. It’s taught me so much about love and support and life.
DH: So what has it taught you about those things?
NC: Well, ya know, just like my little bracelet here says. “God’s got this.” Everyone in my family wears one of these, and it’s what I tell myself in moments of doubt. A few weeks ago I got a false negative. That is, I thought my cancer was in full remission, but it wasn’t, and although that’s a huge bummer, I have to remember that God’s got a plan for my life.
DH: Okay, so if cancer was God’s plan for your life, what do you think He’s trying to teach you through it all?
NC: I think he’s teaching me to have ‘intense’ faith, and also to take action. I don’t know if this is important or not, but I’ve become involved in the Leukemia & Lymphoma Society because I felt like I owed it. There are a lot of patients out there who aren’t as lucky as me. So getting involved and being part of the cause has become very important to me.
DH: Yeah! I think that’s hugely important. You see so much marketing out there for cancer research and it’s finally nice to meet someone who’s benefiting from the solutions they’re developing. You sign up for all these 5k races and never know whether or not they’re coming up with anything viable.
NC: The drug that I’m on right now was funded by the Leukemia & Lymphoma Society, so of course I’m excited to help. And the clinical trial I’m on was also funded by them. So I had to get involved.
DH: Well that’s fantastic. I’m glad I got a chance to talk to you, and it sounds like you’re on your way to recovery. We’ll be praying for you.
NC: Yes, and the support from the Parish has been amazing. Father Bob called during one of my naps – the chemo drugs can really wear you out (haha) – but I am truly grateful for all my family and friends.
