Thursday, September 1, 2011

Do You Know that January is Manuary - Men Grow Facial Hair Awareness Month?

The list of the causes we should become aware of just the first month of the year is this long:
1. Awareness Month Awareness Month
2. Be On-Purpose Month, National
3. Bird-Feeding Months, National
4. Celebration of Life Month
5. Creativity Month, International - by Randall Munson
6. Clean Up Your Computer Month, National
7. Constipation awareness month,
8. National Drag History Month,
9. National (Established by Logo T.V. to celebrate the history and role of Drag Queens in the LGBT community.)
10. Financial Wellness Month
11. Get Organized Month
12. Glaucoma Awareness Month, National
13. Hot Tea Month, National
14. Mailorder Gardening Month, National - according to the Mailorder Gardening Association
15. Manuary - men grow facial hair
16. Meetings History Month, National
17. Mentoring Month, National (USA)
18. National Clown College Month
19. Oatmeal Month
20. Poverty in America Awareness Month, National - according to the Catholic Campaign for Human
21. Development
22. Radon Action Month, National - US Environmental Protection Agency
23. Self-Help Group Awareness Month - according to the Mental Health Clearinghouse
24. Skating Month, National - according to the U.S. Figure Skating Association
25. Volunteer Blood Donor Month, National
Read more: http://www.disabled-world.com/disability/awareness/awareness-dates.php#ixzz1WfKTdRtY
It was a good idea in its original form otherwise it wouldn’t have gone so viral…all of this monthly awareness stuff. I need to note that I am not trying to belittle the diseases or the causes that groups are trying to educate us on, some of them are important. For example, it’s important for a woman to be able to do a self-exam. Early dection is important to teach the public, it saves lives. Manuary, well… I appreciate the snicker at the idea when I read it on the list, and I am glad whatever group, or person, thought of that one, are not pushing it too hard. (I don’t know if this list is complete, so if your cause is not up there it because I am not being through, it is nothing personal.)
I admit I used to turn off the St. Jude infomericals that were on TV (years ago before Kevin was diagnosed). I tried once to watch one and thought to myself this is too depressing and turned it off. I tuned out what eventually became my son’s saving grace. I’m glad other people didn't make the same choice I did.
I now live in a world where I see other moms post on Facebook about going to their child’s grave to visit, I hear about the newly diagnosed and those who have lived, but also live with the late effects caused by such a terrible disease. This is my normal. I never imagined it would happen to one of my children, that my life would take this turn.

Today I met more newly diagnosed as we waited for my son's follow-up appointments at St. Jude. As we waited for blood draws for labs, we met one little boy the same age of my youngest who was diagnosed with Leukemia on my oldest’s birthday. His mom is 9 months pregnant. My heart just sinks because I have a clue as to how hard the journey is going to be. Treatment is tough and scary. We, parents of kids with cancer, agree to fill our children with poisons, stuff we would normally call position control for if they ingested, to save our children. We walk with our children and hold their little hands through hell, praying they make it out alive.
It is hard not to cry at the end of the day here, despite all the amazing things St. Jude does to try to soften the blow. It is a terrible reality of life. And I hate more people are experiencing it. Cancer knows no social economic status, it knows no one faith or church, it sometimes does single out one community if they don’t protect their environment, but it is completely clueless about race.

This brings me to my quandary. September is National Childhood Cancer Awareness Month. In a way, it seems like one more thing to fill the air with, something that can be easily tuned out or turned off. I used to do it. It was too sad. So I have asked myself what is the point of making people aware of such a terrible thing? These are the answers I have come up with:
1. If you find yourself or someone you know facing cancer with a newly diagnosed child (God forbid), hopefully the stories of others will have stuck and help you make educated decisions.
2. When elections come around, if you understand what is happening (I believe strongly there is a connection between environment and cancer, in some cases) you can vote wisely.
3. This is our future. It might seem like just my kid, but it’s not. It’s one of the leading killers of children. And the kids who live through it are left with late effects.
4. I know of enough kids who have died from the disease, or the diseases they get as a result of treatment. The earlier cancer is caught the better chance a child has. Parents need to be aware it can happen and its typically the last thing your doctor will look for when a child starts showing symptoms.
5. Because I believe in my son’s vision for cancer to someday be treated like the flu; you take some medicine, your sick for a few days and then you go on with life as normal. This won't become a reality with out funding for research.
6. I hate cancer, but I especially hate it when a kid gets it.
Today we also met a man who is participating in a St. Jude survivor research project. He had cancer when he was 11. That was 23 years ago. As we both waited for our appointments in the waiting area for physical therapy, we discussed life and moving on. He was a very handsome well spoken man that looked completely normal with his jeans on. His wife, who sat next to him was bubbly, happy and appeared very supportive. But as he told me his story I learned one of his legs is a prosthetic. He lost it to cancer at the age of 11. Bittersweet, but meetings like this sometimes fill me with hope and sometimes make me so thankful for research and improvements in treatment.
A couple years ago I met a young man who had had the same type of brain tumor as my son, only 20+ years ago. He was obviously mentally challenged. As I spoke to his mom I learned that the dosages that they used to give medulloblastoma kids were much higher then and caused some mental retardation. My son did not make it out without consequence, but nothing as sever as that mother and son have to live with.
I am so thankful for the improvements made to treatment. We must keep moving forward as the invasive cancer rate for children has increased 29% over the last 20 years. Rare? Hardly feels like it to me. I wish it was more rare; I shouldn't be meeting so many people in my own community affected by childhood cancer.
So I will do my part to raise awareness this month. You can tune it out or participate, and there will be plenty of simple ways to participate. I'll be posting the upcoming events soon.

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