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Going GOLD for September!

on September 5, 2012

Next month the streetlights in my city of Woburn will most likely turn Pink again for Breast Cancer Awareness.  You will hear a lot about “saving the “tata’s”  It will be an important time for woman across the country and a way to raise money and awareness.  But, before October, comes September.  And it has been designated by many as Childhood Cancer Awareness Month.

Prior to March 8, 2010, my “awareness” of childhood cancer was:

  1. Going to the Jimmy Fund Scooper Bowl every year and eating a lot of ice cream
  2. Watching St. Jude Commercials and feeling really bad for those kids.
  3. Knowing that several kids in Woburn got cancer it in the 70’s, but that it was on the “other side” of town, and didn’t really effect me.

Outside of that, my awareness and knowledge was limited, and I kind of just looked at it as “something that you hear about in books and TV movie of the weeks”

However on that dreadful March day, childhood cancer entered my world.  I sat in the ER at Tufts Medical Center in Boston with my husband and my Aunt, and heard the doctor say “I am sorry, but we found a mass in you sons abdomen”.  The mass was Neuroblastoma, a rare form of cancer – only about 600 children a year are diagnosed with it.  My world as I knew it changed forever that day.  My son Alexander was only 8 months old at the time.  Over the next 13 months he would endure chemotherapy, blood and platelet transfusions, IV nutrition and 12 surgery’s.   He also had a Bone Marrow Transplant using his own stem cells. He spent 247 days as an inpatient at Floating Hospital for Children.  He spent many other days as an outpatient, and had a nurse visit him at home on most other days.   On March 31, 2011 he had a surgery that lasted 16 hours to remove more of his tumor.   His little heart could not take it and he took his last breath on April 1, 2011 at 12:40pm  while in the arms of mommy and daddy.  He was just 21 months old.

Here are some facts about Childhood Cancer (http://www.nballiance.org/facts/)

  • Childhood cancer is the number one disease killer in children.
  • Nearly 70% of those children first diagnosed with Neuroblastoma (what my son had) have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.
  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
  • Sadly, over 2,300 children with cancer die each year – and average of 7 a DAY
  • Every school day 46 children are diagnosed.
  • 1 in 330 children will have the disease by age 20.
  • Currently there are between 30,000 – 40,000 children undergoing cancer treatment in the U.S.
  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only   20% of adults with cancer show evidence that the disease has spread or metastasized.
  • Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are     often  suspected to be, and at the early stages are treated as, other childhood illnesses.
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.

As you can see there is a HUGE need for help in the world of Pediatric Cancer.  The funding is very limited.  Many of the treatments for childhood cancer have not been changed in over 20 years!

You maybe wondering – “What can I do?”  “How can I make a difference?”

Here are just a few ways you can help:

My son was treated at Floating Hospital for Children.  I can not say enough about how wonderful they were.  One wonderful part of the team was the  Child Life Specialists.  These are people that help the children through the difficult days through play, crafts, and other activities.  They are also there to give parents a much needed break.   The toys and things they give the children are mostly from generous donors.  Perhaps your school could hold a drive for these? Many people think of Christmas as a time to donate, but they need items all year long!  Toys, Crafts, FUN Twin Sized Sheets (for the long stays in the hospital), even Glad “Press and Seal” (to cover IV lines during baths).   You can check with the hospital to see what is needed most – they would be happy to guide you.

http://www.floatinghospital.org/OurServices/HematologyOncology/PatientFamilyResources/SupportServices

You can check your local Children’s hospital to see what they might need.

Can you Sew?  There is a wonderful group called ConKerr Cancer.  This group makes Pillowcases for Children in Hospitals.   My son spent 247 days in the hospital.  It can get very bleak at times.  A little bit of color adds a LOT to the room!  Here is their site where you can learn how to make the pillowcases and to find out where you can drop them off

Make Some Noise!!   Make Some Noise 4 Kids  was started by a 12 year old boy who was fighting Ewing’s Sarcoma.  He wanted to doing something to help other kids that were fighting like him.  You can help his foundation in many different ways.    They also have an Angel Quilt that is traveling the country.  My son Alexander is on this quilt.  It is filled with children whose lives were lost to cancer.

Summer is almost over, but there is still time to have a lemonade stand!  Alex’s Lemonade Stand Foundation was founded by a 4 year old girl that was battling Neuroblastoma.  Sadly, she lost her fight, but her family kept the Lemonade stands going!  Since that time they have raised over $55 MILLION Dollars which has gone to research for childhood cancer and family support

Make some Cookies!  Cookies for Kids Cancer encourages Bake Sales to help raise money for Pediatric Research.  Since their foundation they have raised over $4 MILLION Dollars.  They also offer a patch for Scouts (boys and girls) that help them with fundraising.

Shave your head!  If you don’t mind giving up your hair for a while (after all it WILL grow back!) Consider finding a St. Baldrick’s Fundraiser! They raise funds for pediatric cancer research.

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3 responses to “Going GOLD for September!

  1. Karen Capucilli says:

    Wonderful post about awareness and such a variety of ways to help! There is something anyone could feel comfortable with here.

  2. Marie Nader says:

    ConKerr Cancer loved interacting with Alexander and his family. That red wagon circling the floor was so silly. It also offers a patch for Girl Scouts (and Boy Scouts) who help out in some way. It was designed locally and completely by young folks. Also, community service hours can be documented for various chores done by folks. We’d love your help. The reason was sad, but I am so glad that I got to know Alexander and still am friends with his family.

  3. carmen says:

    Nancy you are so strong – thank you for writing such an excellent entry about Childhood Cancer Awareness. Sending you lots of positivity and light

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