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September is Childhood Cancer Awareness Month

One family's experience with childhood cancer, and ways you can help.

Next month the streetlights in 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.  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

 

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

http://conkerrcancer.org/home/ 

 

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.

http://www.makenoise4kids.org/index2.php

 

 

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

http://www.alexslemonade.org/home

 

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.

http://www.stbaldricks.org/

 

 

Thank you for taking the time to read this letter and learn more about childhood cancer. 

 

Nancy Whipple

Mom to Angel Alexander the Great Whipple

http://thecookiegal.wordpress.com/

 

 

 

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Julie Sutherland September 07, 2012 at 06:51 PM
Nancy provides some great info and suggestions on ways we can step outside ourselves to help make a difference. A child is diagnosed every 40 minutes... tick, tick... the time to act is now :) I am up for a little noise making and show of gold... are you? Julie Sutherland --in memory of Nancy's beautiful son, Alexander the Great!
Maureen Foley Cioni September 08, 2012 at 06:14 PM
Hi Nancy, I'm so sorry for your loss. I can't even imagine what I would do if my girls were sick. I'd like to invite you to my Fundraiser for St. Baldrick's Foundation (its what I'm doing to help raise awareness and money for research). Thursday Sept 13th at the Tanner Tavern. Here is the link to the event on the Patch. http://woburn.patch.com/events/have-dinner-help-cure-kids-cancer This is the last Fundraiser before the actual Shave For the Brave event on the 16th but I'll continue to raise funds after that. Thank you for all these other great ways to help too!

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