April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words "your daughter has cancer." They are four of the worst words that a parent could ever imagine hearing.
Perspective is important. We should all keep in mind that our problems could be worse, and that all suffering is relative. This can help us feel less overwhelmed by our own challenges, more grateful for our many blessings, and more compelled to empathize with and help others.
As we have done every year since my daughter Alexandra "Alex" Scott held her very first front yard lemonade stand, volunteers across the country will host over 2,000 lemonade stands and events to raise funds for the fight against kids' cancer during National Lemonade Days.
As time went by during my daughter Alexis' long thirty-three month battle, we found out that her tumor was growing. We found ourselves in Manhattan seeking to gain enrollment in what looked to be a potentially promising trial. But after preliminary tests we were told that Alexis was ineligible.
In the days left, we would live life in the way that Maddie loved. We would enjoy our time, and use our "forever" to miss her. She was here now and needed her little sisters, Amelia and Lucy, her family, her friends and lots of fun.
The manner in which we as a country have been attacking the cancer problem is not working. Cancer still takes kids from their families on a daily, weekly and yearly basis and the incidence rates are not lessening. That is unacceptable.
I am not here to speculate on what happened at the finish line, instead I am here to share what I know of the special bond that exists between runners, those who cheer them on, and the clear display of heroism that is found in both.
From my earliest entree into blogging in my daughter Alexis' journal, I learned quickly that the childhood cancer community was a very disorganized and dis-unified group of entities and individuals who all had the same ultimate goal: a cure.
The words we use to talk about cancer, in children and adults, influence how we think about cancer and those unlucky enough to be touched by it. Survivors are called "victorious" and "winners." Those who have not survived their cancer are called "angels" and "in a better place.
I used to believe that there was a formula -- ...step on a crack, break your mother's back.
I thought that if even against my better judgement or despite my best efforts, if I indeed stepped on a crack, that I could avoid the next seven cracks and take it back.
Money makes the world go 'round. Or so we are told. Certainly for medical research, this is true. And, for the childhood cancer community, it is clear where we fall in the federal spectrum, i.e. on the low end of the stick.
It's hard to actually convey just how horrendous nausea can get. With my own experience, I didn't have a lick of it after my first three days of chemo. The docs said that most of that was because of the anti-nausea drugs. And then came day four.
It starts with us as advocates educating our physicians on these pathways and expanding the overall knowledge base of these channels. This is often difficult for a parent who is trying to balance saving their child with making every moment count.
Evidence of her enduring loyalty followed Shammy from the beginning of her time with us. Shammy joined our family when Alex was battling cancer. All along Shammy was teaching us an important lesson about life -- to be excited about the little things that life had to offer.
It is easy for me to write about childhood cancer in many respects. It matters to me. It touched me personally through the diagnosis and loss of my amazing daughter Alexis. Where I think the struggle lies is changing the entire landscape with respect to fighting the disease.
I know your family misses you so much but I also know that they are so very proud of you. They literally beam with pride whenever they talk about you and while you will always be in their hearts, you are now in many of ours too.
ACS is one of the largest, if not the largest cancer foundations on the planet. They have done amazing work in the space of cancer by leading the way on many fronts. Where the ACS should bow their heads in shame is when it comes to childhood cancer.
Every parent who has lost a child to disease or some other mechanism knows this pang. In most instances, as time marches beyond the day your child passed away, these moments of blunt force trauma to the soul are brought about without any warning or advanced notice.