Tuesday, September 4, 2012

We're Aware...Are you?

 As you may or may not know, the month of September is Childhood Cancer Awareness Month.  If you are anything like I used to be, I used to hear that and think... "Oh Bless their hearts!  Those poor families that have to deal with cancer."  I never thought about how I could help nor did I EVER think I would have to become aware.

  Friends, I AM AWARE in a way that I hope none of you will ever be, and I wish I never was. I was aware as I was on my knees in front of EVERYONE at Texas Children's begging God for no cancer in Clayton's body.  I was aware the moment I signed off to allow my son to have treatments that could cause death, hearing loss, future cancers, blood transfusions, nausea, hair loss, no energy, no immune system.  I am aware when I look at the dark circles under his little eyes, when I hear him cry in his pillow at night, when I see him THRILLED to get out of the car for school because he's allowed to be somewhere.  I'm AWARE. Ask any of my three older children about childhood cancer.  I promise you, down to my 9 year old, they're more than aware too.

 I'm sure most of you have no idea how little funding is really given to childhood cancer research.  It's incredibly discouraging. It's unacceptable and unfair. We need to be aware.

      I spent an hour Friday arguing as a heartsick mother with Clayton's doctor just begging him to tell me there is something besides this awful chemo that will save my son.  Questioning him on how they can NOT know.. in a frustrated moment reminding him that my son is NOT his, so he can't possibly say what he'd do if it were his son.  You see, we were discussing the idea of lowering the dosage of one of Clayton's three chemo drugs.  Some small study is being done now to see if lowering the dose of this particular drug would be successful and still help prevent recurrence.  This is important because this is the main drug that  RAISES Clayton's chances of acquiring leukemia later in life.  So, I was left with two choices, lower Clayton's drug based on a new study and possibly raise his risk of reoccurence, which we've been told is much harder to cure than first time diagnosis, or continue on his current protocol and continue to put his body at risk of leukemia later down the road.  Wow!  Yes, Friends, I'm AWARE! I'm aware that not enough "research" has been done to help our doctor and Chad and me make this decision. I'm aware that there is currently no way to PREVENT cancer.
  I get discouraged at the things we worry about in this country.  I know that politicians, with the help of many American people, will spend tens of millions of dollars on the upcoming presidential election.  Let's be honest, I'd say 95% of us know who we are voting for already, so why all the expense there?  I'm also aware of ridiculous funding our country recently spent on a study of Mars... seriously, Mars is more important that my child's life and the lives of many others?  It's concerning.  Be AWARE.

About a month ago I was sitting at Cook Childrens watching two nurses clad in protective gowns and gloves administering chemo to my baby through his IV .   Just during this time, I was reading conversations all over the social media extentions about who is or is not eating at Chick Fil A and how awful and terrible these people on either side are.  Really?  Does anyone else see that our focus is off here?  It's frustrating to say the least.

    All I would ask you to do is take  part.  Be aware.  Go to Chilis this month.  They are taking donations for St. Judes research hospital. Give a little. Find one of Alex's Lemonade Stands in our local stores.  Give a couple of dollars.  Find a research relay to run in....Run, Walk, or support someone who is.  I'm just asking us all to take part in this.  You never know when it might be your child, your future grandchild, your family.  With four kids, I have the potential to have many grandchildren.  God forbid one of them would ever face this, I'm praying and trusting that our country will have come up with something better then.. Something that could PREVENT this.

    Well, sorry about my soap box.  I don't usually go off on these things, but the Cancer Awareness month makes me excited to hope that we're actually AWARE.  I know the parents of those children who were not as fortunate as Clayton and who have been made whole and healthy in heaven are far too aware. 

    For a Clayton update, he was able to do big chemo on Friday.  He was accompanied by his Daddy.  It went well and he's doing great for having just had his treatment.  He was able to return to school today, and came home happy.  Please continue to pray that his counts stay up for him to go to school and that he feels well.  We so appreciate you all for your love and support to our family and your constant prayers.  We feel them. I added a picture here of what I was doing while Clayton had his big chemo Friday night.  I was able to drive to College Station and watch my beautiful daughter experience her first night dancing as a Goal Tender.  I bawled the majority of the time, so proud of her, thankful for her health, and sad about how fast she is growing up!  Love that Kate!

1 comment:

  1. I can appreciate your heartache over the potential long term side effects of the chemo... last week our doctor told us that one of the children on the same trial as my daughter died...from the drug. I immediately started bawling and thought I was going to vomit. I said "I just can't IMAGINE how those parents feel." The doctor (patiently waiting for my emotion to pass) said, "we can't think about that right now, we have to think about your daughter." and I thought- (in my brain because it would have been rude to say this out loud) " For being so educated, You are SO STUPID!- I AM THEM...THEY ARE ME!" Parents faced with the same impossible choices....it's a horrible and painful place to live. I remember the very first day they laid out all of the information with the beginning of chemo- all the papers to sign which described the drug- all of the potential horrible side effects- and then they hand you the pen and ask you to "sign please" so they can put all of the poison into your child's body....and as much as you don't want to you feel helpless, and choiceless to do anything else.