A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for November, 2011

Life is one Breath Away From Death

Grace: A Child's Intimate Journey Through Cancer and Recovery

“The whole of life is but a moment of time. It is our duty, therefore, to use it, not to misuse it.”

~Plutarch

This quote has extra special meaning to me right now, as I squeeze every drop of time from each day. I love knowing that “the whole of life” is “but a moment of time.” If we could see our lives as a whole more often, I believe mankind would include many more people of action. Something about the pace of our lives makes us view it all too often through the Zoom In Button. We see the teeny-tiny picture, but have no clue where it fits into the great scope of life.

When we hit the Zoom Out Button, the Grand Scope of Humanity comes into focus. We are able to see past the dirty laundry pile, into the external world that is calling for our help. From that external world is where I hear children’s voices calling to me. When I look to see who is calling, I hesitate knowing there is someone in need. Will I be able to help? What if the problem is way too big for me to handle? What if I allow this calling to change me? What if try my best to make a difference and fail?

“The fact is, that to do anything in the world worth doing, we must not stand back shivering and shaking at the cold and danger, but jump in and scramble through as well as we can.

~Robert Cushing

Action. What we need in order to stop childhood cancer is action. We need not be concerned about what is the right way or wrong way—just to make a way. I agree with Robert Cushing; it’s okay if we “jump in and scramble through as well as we can.” Even though finding a cure for cancer seems like an enormous and out-of-reach goal, we all better jump in and start “swimming” toward the goal of raising money for research that will lead to a cure.

Oh yes, there will be those who shake their heads and wonder why you would ever “waste your time” working toward a goal that is unattainable. There will be those who wonder why you have chosen what you have chosen to do to be of help. There will be those who scoff and snort and mumble when they see you working hard for a cause.

“Great spirits have always encountered violent opposition from mediocre minds.”

~Albert Einstein

But then…

There are people who dream big and work hard to create reality out of their vision. May I please introduce you to someone I learned of this past week?

The Andrea Rizzo Foundation (@DreasDream on Twitter)

http://www.takepart.com/photos/exclusive-carrie-ann-inaba-use-her-dance-skills-inspire-kids-cancer

Andreas dream and spirit live on through the joy children receive from this foundation.

I leave you with two opportunities for Childhood Cancer Advocacy with only a click…

Yes, if you click, it means you are a person of action!

Journey for a Cure— Ipads to cancer kids in the hospital

http://pep.si/rN6Mjf

Wet Will-E Water Balloons on Facebook

Please like this page and type “Isaiah Alonso Foundation Please!”

https://www.facebook.com/wetwillewaterballoons

Each one of us needs to become a person of action. If we recognize our lives as the gifts that they truly are, we become people who use, rather than misuse, our lives.

Life really is one breath away from death.

Thank you Anna! I agree!

Pharmaceutical Companies Challenge

Grace: A Child's Intimate Journey Through Cancer and Recovery

The U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

Treating children with cancer is not profitable for pharmaceutical companies.  Without huge changes to the PharmaceuticalCompanyGreedMachine, we will continue to fail the children of our country. Childhood cancer is the number one cause of death by disease in the United States.  Since the causes of childhood cancer remain a mystery, it seems to me that our country should be pouring time, sweat, and money into finding the cause and to creating a cure.

Instead, it seems to me there are many ostriches with their heads and necks stuck deep in the sand.  They don’t want to pull their heads out and look around because the truth will be ugly.  The ugliness is not childhood cancer; the ugliness is the fact that childhood cancer continues its rampage of destruction while we sit idly by.  I don’t have their financial documents in front of me for audit, but I will bet that pharmaceutical companies are making a large enough profit where they would be able to donate a few million for altruistic purposes like wiping out childhood cancer.  Yes, I call on each pharmaceutical company to audit the hearts of your CEO’s.

“The world will not be destroyed by those who do evil, but by those who watch them without doing anything.” ~Albert Einstein

Imagine how difficult it is for a child to fight cancer. Then, take in this reality…

“In the past 30 years ONLY ONE new cancer drug has been approved for pediatric cancer.”

                                                                                       ~Pablove Foundation

Can we, knowing this truth, sit with our mouths silent?

I cannot.

For the children who survive childhood cancer, 2/3 will suffer some form of lifelong effect from the treatment. All too often, it is the treatment that kills a child fighting cancer. All too often, it is the treatment that causes extreme pain and suffering.

http://abcnews.go.com/Health/story?id=2553765&page=1#.Tr7zREOa9tN

We are desperate for new treatments. We have not had a single meaningful improvement in pediatric cancer medication in decades and the children have paid the price,” says Dr. Peter Adamson, chief of the Division of Clinical Pharmacology & Therapeutics at The Children’s Hospital of Philadelphia. “Even though we cure four out of five pediatric cancer patients, even those who survive often go on to have lifelong side effects from the treatment we give them.”

This news story tells more about the difficulty of getting big pharmaceutical companies to develop new, less-toxic treatments for children with cancer…

 http://abcnews.go.com/Health/CancerPreventionAndTreatment/big-pharma-treat-childhood-cancers/story?id=14571277

What a sad truth it is to know that it will take legislation like the Creating Hope Act to lure pharmaceutical companies into doing what is the ethically right thing to do.

I invite all pharmaceutical companies to prove me wrong… show us that the health and happiness of our children are more important than any amount of profit you can gather and store.

Please don’t wait. Time is paramount.

Please continue your support for Reef

http://www.savebabyreef.com/

1,000 Candles for Baby Reef on Facebook:

https://www.facebook.com/groups/70216977000/

 

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Peace and Aloha Auntie Priscilla

Grace: A Child's Intimate Journey Through Cancer and Recovery

Priscilla Jayne Valdez became my Auntie Priscilla not because of any blood relation, but because of a strong connection of our hearts.  My mom met Priscilla when she was fourteen and a freshman at Claremont High School. They have been friends ever since.

One of the things I hear over and over again from families who have a child fighting cancer is how things change once their child is diagnosed. It’s not only the day to day dealing with health and life and death issues, it is dealing with many new emotional issues as well.  There will always be someone—friend or family– who is not able to handle the reality of the illness. Some people flee from your life as if they are fearful they will become sick too if they stay around.  On the other hand, there are family and friends who draw near, remaining right by your side in case there is any way they can help.

My Auntie Priscilla is one of those family/friends who have always been by my side.  In the midst of my treatment, after my treatment, even during the creation of my book, she has been a constant support. Over twenty years ago, one of Auntie Priscilla’s friends lost their baby girl to cancer. She never forgot, and she has always given generously to help stop childhood cancer. She has taught me about kindness and generosity by her example.

While I was in treatment, Auntie Priscilla and I grew very close as a bond grew stronger and deeper and a treasured understanding of each other developed.  She has fought health problems for a decade. 

“My mom and I traveled to Irvine to meet up with Priscilla and her daughter, Tanya. Our incredible friends from Washington have supported me every step of the way. Priscilla, unfortunately, was in extremely poor health, and when I was asked whether or not I wanted to go, I did not even take a single second to think about it. I had to go. I had not seen her in nearly five years, and I had to go thank her.

I’ll tell you, just to put my arms around her, look into her bright hazel eyes, and show her my gratitude was unbelievable. Amazing. Funny thing, too, I suddenly had a new sense of compassion for her. Always having felt sorry that she had to go through all that she went through, I now had a different feeling toward her. It was as if I could not only see her pain, but feel it as well. I know what it is like to be that sick.

Auntie Priscilla, you are incredible, and I love you so, so much. You have done so much for me, and I am at a loss for words to express my gratitude. You are so strong, and you have a heart of pure gold.

Going to see her helped me to remember to cherish every step, every breath, and every improvement in my recovery. I was reminded that, although life is so, so tough, and I’ve been through the wringer, I still have so much to be grateful for.”

Copyright Melinda Marchiano Grace: A Child’s Intimate Journey Through Cancer and Recovery

On October 27, 2011, Auntie Priscilla left this Earth.  I have no doubt she is now in the arms of our Heavenly Father. As I drove home from dance on this same night, it was late and the clear sky was filled with stars. I drove past the Avila Beach exit and around the corner on the 101, heading south into Shell Beach when I noticed a brilliant star in the sky. It was so bright I thought it had to be a planet. Just as this thought passed through my brain, the shimmering star began to shoot across the sky over the ocean, displaying the most spectacular astronomical event I have ever witnessed.

Auntie Priscilla called me her Little Angel. 

I think my Auntie gave her Little Angel one last amazing gift of love.

Peace & Aloha Auntie Priscilla

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