Tonight's picture was taken in June of 2007. We took Mattie to Lancaster, PA and along one of our adventures we came across a farm with a fascinating trampoline in the middle of the field. I will feature that photo at some point this week. I have never seen a trampoline like it or seen one like it since! Mattie had a great time running around at the farm and naturally I couldn't resist a photo with these cut out farm animals!
Quote of the day: Whenever you read a cancer booklet or website or whatever, they always list depression among the side effects of cancer. But, in fact, depression is not a side effect of cancer. Depression is a side effect of dying. ~ John Green, The Fault in Our Stars
Each night I search for a meaningful quote to post on the blog. Last week I came across this quote and I have to admit I found it perplexing, and skipped it. But now I understand who John Green is because I am reading the book Isabel gave me yesterday, The Fault in Our Stars. This quote is actually found within the first chapter of the book. In many ways, this is a deep quote. Because "dying" could mean many different things when diagnosed with cancer. It could be the metaphysical dying of one's self, because the diagnosis, toxic treatment and side effects do cause you to become a shell of your former self. Or "dying" could literally mean dying. The greatest fear one has when your child is diagnosed with cancer is that he or she could die! Guess what though, children have the same fear as well regardless of their age. The fear of dying and suffering can lead to feeling depressed no doubt. So Green's quote is somewhat accurate, I just never thought about it in this way.
My friend Heidi sent me a link to a 51 minute video that was featured in the Washington Post two days ago. I watched a portion of the video a day ago, but I did not get passed the first five minutes. Today, I sat down and watch all 51 minutes of a video that hopes to go viral and spread awareness of childhood cancer. I attached a link to the video below in case you may want to see it. Despite its length, the overall content of the video is quite good. The parts that truly resonated with me were the children's own words and that of their parents. If you do not want to watch the whole video, consider checking out minutes 6:20 to 13:00. There is a counter on the video, so you can fast forward it. At minute 6:20, you will hear the perspective of living with cancer from the mouths of children. I found their sweet and innocent faces very compelling, but you can also see how cancer ages them psychologically and mentally. After all, these children are waging a war within, a war most of us would like to believe can't happen to children. But I know it can and I lived through the horror! A horror that lives within me forever.
Some of the comments from parents were incredibly poignant. One mom stated that she wasn't sure what was worse, having to sign the consent papers to have chemotherapy administered to her daughter, or to have to see how these toxic drugs ravage her daughter's body and mind. It is a very painful reality as a parent to know you have no choice but to choose the evils of chemotherapy. This mom also mentioned that there are warnings all over the chemo bags, so as to not come in direct contact with the liquid, and yet this liquid will be going directly into the body of your child. Another mom also broke down the myth of the 80% five year survival rate in children. I was THRILLED to hear this!!!! I HATE that statistic, and when doctors promote it, I just shake my head.
I remember one day lecturing a group of grad students and I mentioned the '80% five year survival rate.' I asked them if they understood what I was saying, and of course they said NO. The 80% five year survival rate means that children today have an 80 percent chance of surviving five years post-treatment. It DOES NOT mean that 80% of children diagnosed with cancer are cured and survive! The mom in the video went on to say that her son was once part of this 80% group, yet his cancer came back before the end of five years post-treatment. Unfortunately this little boy named Jack (only 10 years old) died. So from her perspective, the 80% rule is meaningless. Certainly for someone like Mattie, we never even made it post-treatment, so the fact that 4 out of 5 children become part of this 80% group doesn't make me happy at all. In fact when I hear physicians tout how far cancer treatment has come, I want to say.... ARE YOU KIDDING ME?! We haven't come far enough when 1 out of five children die, and the other four that remain alive will be dealing with late term effects, many of which involve secondary cancers that arise as a result of the toxicity of treatment received. What you need to understand is that the cancer battle DOES NOT end once the treatment does! Once diagnosed with cancer, one lives with the fears of it returning as well as a whole host of long term medical side effects.
When I got to minute 21:32 in this video, a listing of organizations that raise money for childhood cancer were flashed across the screen. The video wanted to highlight that a majority of funds to support childhood cancer treatment come from private groups! To my amazement, there was Mattie Miracle with its beautiful sun prominently displayed on the screen! Mind you, no one interviewed us for our logo, but to me this means our message is getting out there!
I also want to bring your attention to minute 27:35. You will see snippets of the Director of the National Institutes of Health in a briefing. This very brief sequence was STELLAR. It was stellar because it shows how important childhood cancer is to this individual and to the organization as a whole. Notice how many times he refers to childhood cancer in the video!!!!!!!!!!!!!!! You will see he lists over and over again breast, prostate, colon, and lung!!! Want to know how many times he refers to the work being done on childhood cancer????? A big ZERO!!!! This speaks volumes, doesn't it???!!!
I know many of my readers have been educated for years now about childhood cancer from Mattie's blog. But sometimes hearing a different perspective from mine can be helpful, or in this case, I believe it further verifies the thoughts, feelings, and insights I try to share with you each night. So I end tonight, with the video:
Loudoun high-school graduate makes documentary about childhood cancer...............................................
http://www.washingtonpost.com/local/education/loudoun-hs-graduate-makes-documentary-about-childhood-cancer/2013/06/09/2134a126-d114-11e2-8cbe-1bcbee06f8f8_story.html?wpisrc=emailtoafriend
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