Have a seat. Fasten your seat belt. We are about to experience some extreme turbulence.
46 every week day. 7 every day. 36 every day. 10 every week day. 12,500 a year. 12 different types. 80% ‘cure’ rate overall. 95% cure rate for Acute Lymphoblastic Leukemia. 1 in 5. 3/4 of survivors. 1 in every 330.
I am so sick of numbers. I am exhausted by the word ‘rare’. I could give a crap less about statistics. From the very beginning I was able to wrap my head around the idea that Gregory was a statistic of ONE. One Gregory, one disease, one donor, one life. He had a 20% chance of surviving JMML. A 50% chance of surviving transplant. He has a 100% chance of getting through this as HE will get through this.
Except people want numbers. People want and cling to statistics. A measurable way of asking questions we have no way of answering. Want to know why numbers can’t express what we want them to?
The numbers are too small. Childhood Cancer is rare. (I told you it was going to get rocky.)
Not only that, but ‘Childhood Cancer’ is not a diagnosis.
Still with me? You’re brave or masochistic. Either way, your are always welcome.
The numbers we use for childhood cancer statistics come from many different sources. I have yet to see anyone itemize the statistics we use and source the information. Why? It’s too flippin’ complex. American Childhood Cancer Organization has a decent representation of general childhood cancer statistics.
That 12,500 number we use to indicate number of kids diagnosed with cancer in the United States? It covers 12 different families of cancer. TWELVE. Within the 12, each ‘family’ of cancer has several different types/mutations.
According to BeTheMatch.org, about 2,700 of that 12,500 is ONE diagnosis within the leukemia family. Acute Lymphoblastic Leukemia. A disease that has a 90-95% survival rate. Depending on where you look. ALL (using these numbers) accounts for over 21% of all childhood cancer cases. That is a very large number of ONE diagnosis. Yet it is a very small number of individual diagnosed cases.
The rest of the types of cancer? I do not have those stats on hand. I do know this. Gregory’s cancer, Juvenile Myelomonocytic Leukemia (JMML), there are 25-50 cases of JMML diagnosed every year in the United States. I’m sure many of my friends could quote the incidence of their kiddos cancer. If you can, PLEASE drop a comment with the info, also the citation, if you know it.
As a comparison:
Breast Cancer: According to cdc.gov: In 2007 (the most recent year numbers are available)—202,964 women in the United States were diagnosed with breast cancer.
Lung Cancer: According to cdc.gov: In 2007 (the most recent year numbers are available)— 203,536 people in the United States were diagnosed with lung cancer.
Prostate Cancer: According to cdc.gov: In 2007 (the most recent year numbers are available)—223,307 men in the United States were diagnosed with prostate cancer.
Three diagnoses, over 625,000 cases. Versus 12,500 cases of 12 different types of childhood cancer. Granted, adult cancers are typically due to aged cells, lifestyle, environmental/chemical exposure. Kids don’t smoke, drink and are well, are kids. Young.
The childhood cancer community can’t compete with these kinds of numbers. Childhood cancer, as a family of diagnoses, is rare. Not to mention the tiny numbers of each individual diagnosis. It certainly does not feel rare when it happens to you. It does not feel rare when each one of our members has a plethora of families that we follow, fall in love with, laugh with and grieve with. It does not feel rare when 46 Mommas are together, in one place, shaving their heads for childhood cancer research. It does not feel rare when your child dies. It hurts, it’s fearful, it’s full of anxiety. It permeates every cell of your existence.
I will say this about the word rare. DO NOT use it to dismiss the childhood cancer community. Ever.
What does all this mean to me? It means that we, the childhood cancer community, is truly a grassroots community. Yes, we do have friends and supporters that are not immediately touched by childhood cancer. By and large, the blood, sweat and tears of fundraising, advocating and raising awareness of childhood cancer is done by us. The ‘users’. We are a passionate, motivated and dynamic group. We are also exhausted, weary, depressed, anxious, fearful….. We are tired. Yet we keep on, keeping on. While it would be grand to have the same support that some adult cancers have, quite frankly I don’t want to see those kinds of numbers of diagnoses in order to garner that kind of support.
Over the past three years I have had to decide WHERE to place my allegiance. Where do I put my time and energy to get the most bang for my buck? I SHOULD support the JMML Foundation. Yet I came to the conclusion that my fundraising time would be best spent supporting a broader scope of childhood cancer research. (Talk about a tough decision to make.) Which is why my charity of choice for funding childhood cancer research is St Baldrick’s. I offer my time, my heart and my experience to the JMML Foundation. Locally I support our chapter of American Childhood Cancer Organization. ACCO Inland Northwest. Kinda spread thin, yes? Don’t forget that I have three kids, one of which is living post a diagnosis of cancer and a bone marrow transplant.
Can you see why childhood cancer families are tired? Can you see why we might be mad, from time to time. Can you see how the word ‘rare’ might bring out some ire? We are a fierce bunch. Yet, we are rare.*
With limitless love…..
*The opinions expressed in this blog entry are not necessarily the opinions shared by the childhood cancer community. These opinions only belong to the writer of this blog. Any implication is unintended and not meant to be disrespectful of others’ opinions.