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:
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.

Tuesday, August 30, 2011

Love and Determination Wins

I wrote this Nov. 2010 -- It has taken me a while to get this up here.

Shortly after lunch my ex-husband and I had a meeting at the school to go over our son's I.E.P with his teacher and resource room teacher. His IEP (Individualized Education Plan) was put in place upon his return from cancer treatment. It is a plan that has acted as a vehicle to help him with the cognitive problems and deficits resulting from his brain surgery and treatment. Kevin missed most of 2nd grade and the beginning of 3rd grade.

The backstory before Kevin's diagnosis:

Kevin's dad and I started the divorce process when Kevin was 6 months old. We both have had to make compromises to give Kevin the best that we can. We have had to learn to work past hurt feelings and learn to work together in our own ways. It isn't always pretty but we have figured it out. When I married Kevin's stepfather, Mike, he was happy and eager to accept responsibility for sharing in the effort to raise Kevin. We all have our quirks, we all have our strengths and we all have our weaknesses.

So fast-forward to the time shortly after Kevin's diagnosis and brain surgery. I was an emotional wreck, as probably most mom's would be finding out that their child has cancer and requires some pretty scary treatment. I was busy negotiating and learning the hospital system as quickly as possible while trying to still care for an infant and trying to spend each moment I could by Kevin's bedside. Kevin's dad still had work to balance and he did the graveyard shift majority of nights while Kevin was at the Children's Hospital. Kevin's step-dad and I shared daytime duties some overnights when Eric needed a break, typically overlapping. As we fell into our groove, as the shock wore off, one afternoon I watched Kevin's step-dad reading to him and saw how it calmed him down. His aunts read to him when they came to sit by his bedside, his grandmothers, his grandfathers. Kevin starting going through book after book, probably enjoying the familiar voices carry his thoughts far away from a strange nightmare of a situation into whatever make believe world resided in those books.

When we signed the protocol outlining what Kevins treatment would be in 2008, we were also told that the permanent late effects from the cancer and/or treatment could be:
  • loss in IQ,
  • hair loss,
  • growth hormone deficiencies,
  • memory problems,
  • learning disabilities,
  • bladder damage,
  • sterility,
  • lung damage,
  • kidney damage,
  • hearing loss,
  • damage to nerves,
  • damage to brain tissue.

As Kevin went through treatment we tried to continue his education the best we could with weekly visits from a private teacher that St. Jude provided, trying to make it through homework despite his low blood counts, and when the blood counts were high enough and it was safe we went to historical landmarks around Memphis, museums and the zoo. I had a hunch that as we were killing neurons in his brain we could make new connections if we kept his brain active, to continue to challenge him just enough without him feeling pressured and overwhelmed. To Kevin's credit also, he hasn't been a wimp either. He has worked hard to overcome and catch up. He has set backs when his shunt malfunctions and we have to spend more time at the hospital and doctors. His dad and I have spent hours working with him, we've hired tutors. But Kevin also enjoys learning, asks questions, and seems to enjoy having his head in books all the time.

At Kevin's I.E.P. today Kevin's teacher pointed out something I hadn't grasped in my somewhat frantic effort to try to make sure Kevin still had a future – now in 5th grade Kevin is doing grade level work - amazing! The only thing he requires is a trip to the resource room to take some tests, at his discretion. He is allowed extra time for his tests, but from the report today he isn't requiring the extra time as much. The teacher pointed out Kevin basically skipped all of 2nd grade and apart of 3rd and caught up by 5th grade. That took my breath away….. because he has.

In my score sheet for Kevin, love and Kevin's determination gets a million points and cancer gets 1. Take that cancer!

In my Danish-heritage induced tendency toward optimism, I have to think that if a bunch of adults (ex-husbands, ex-in-laws, new in-laws, family, friends, teachers, strangers, etc.), some of who according to society norms are supposed to dislike each other, are able to shun "normal" and work amazingly well together (I think my ex-husbands dad is one of the best peacemakers I know) to take care of one sick child – I ask what could our country do if we only lived up to our capability to look out for one another?

I also can't help but mention, if we can all put our differences aside to help a child (or children) overcome a terrible disease, I know its on a much larger scale, but why can't our country do a better job of coming together for the good of all? How about for those facing cancer without health insurance? For those who lose their health insurance in the midst of a health crisis?

I see such contradictions in some groups where they are the first to volunteer and help; sometimes those groups are the first to vote down legislation that would allow everyone access to health care and help make our country much more economically competitive with majority of developed countries.

I may see the world differently than most; I have seen kids suffer terribly, I've watched parents lose their children in very painful deaths that can take months-- I almost lost mine this way. I also have seen the amazing power of community spirit.

In honor of what those children have to go through, the late effects they have to live with that for previous generations of survivors has made employment difficult. It is these survivors and their fighting spirit I try to keep in mind as I try to conquer Chemistry and Math (my two worst subjects). I'm well aware life isn't always fair, but that doesn't mean we should make it more difficult for those who have already been dealt difficult circumstances. Kevin was given a soft landing spot in the form of St. Jude Children's Hospital. My wish is more people have soft landing spots in the midst of their challenges, a place to support and rise back - as Kevin has with lots of help, support and understanding from others.