thecookiegal

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So sad

We learned today that another child that we knew at Floating, earned her Angel Wings 2 weeks ago.   I don’t know exactly how old she was, but I am pretty sure she was under 3.  Including Alexander, this makes SEVEN children that we knew in the last 2.5 years since STUPID CANCER entered our lives.  Seven young lives – taken way to soon.  Seven families with broken hearts.  Lives, that will be changed forever.

It is just so sad to keep hearing about children dying.  It just isn’t fair!!
On Friday, September 28th, my friend Tony (Dad to Angel Cole) has declared it “A Day of Yellow and Gold”.  Gold is the Ribbon color for Childhood Cancer – but knowing that most people don’t have any “Gold” colored clothing, he is asking that everyone wear YELLOW (or Gold if you have it) on that day to try to get awareness out there for the children!

I made shirts for us.  The shirts we only $3 at AC Moore, and I had some transfer paper for the other part.

 

Tony has also created an Online Petition to Create a National Day of Yellow and Gold!   Please consider signing it.  Perhaps one day, the Children and the GOLD will get as much attention as the Breasts and the pink!

 

http://www.change.org/petitions/petition-to-create-a-national-day-of-gold-for-childhood-cancer-awareness?utm_campaign=petition_creator_email&utm_medium=email&utm_source=share_petition

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Just Two Minutes!

Can you take just two minutes and watch this video?  Dell Will donate up to $30,000 to pediatric cancer research for every hit it gets!

 

Thank you!

 

http://www.causes.com/causes/789392-powering-the-possible/actions/1672930

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How did it change your life?

(This is a re-post.  It was originally posted last year on 9/10)

Tomorrow marks the day that our county changed forever.   I was sitting at my desk at Lycos, just starting my day.  Someone walked by and said “A plane just hit the world trade center”.  I didn’t think much of it.  I seem to recall that just recently a person with a parachute jumped, perhaps on purpose and hit the Empire State Building or something like that.  I also thought he was talking about the trade center in Boston. Perhaps a small plane?  I went to one of the news sites and didn’t see anything, so I went back to work.  A few minutes later someone said “you all need to go see the tv in the gym” (we had a gym in our building)  We went downstairs, and watched the first tower burning.  We were there when the second plane hit.  We watched in horror, as we knew then it was no accident.  The said it was an American Airlines Plane from Boston to LA.  My sister was on an American Airlines Boston to LA flight the day BEFORE.  We don’t remember now if it was flight 11 or not, but my heart still sank.  It could have been her, as she often changed her flights at the last minute.

When I got back to my desk, I had a message from my father – he was crying on the message, telling me what happened.   My sister called me later, and said “what the heck is going on? Dad left me a message and he was crying”. Because of the time difference, she did not know what happened.  I think about that same time, the plane had hit the Pentagon someone had shouted out “a bomb was at the Pentagon”   I told my sister she needed to turn on the news and watch.  We left work early, and I went to be with my dad at his office.

I would later learn a woman I went to college with, had been in the building, but made it out safely.  My cousin lost a very good friend as well as some former co-workers at TJ Max on that day. Outside of those stories, I didn’t know any one personally that was on the plane or in the buildings.  I did not have a direct lose that day, but of course things changed.  I remember I had a condo board meeting that night, and was thinking “how can just be sitting here?!?”  I went out for ice cream that night and it was very busy – I remember saying to someone in line “I guess I am not the only one that can’t watch the news anymore”.    I brought the ice cream to my parents and we watched more news.

The days passed slowly – I felt so helpless.  I could not donate blood, I could not go to NY to help.  I wasn’t a nurse at the time – my job was sitting behind a desk all day.  I can recall a few  companies cancling their advertising contracts – the reason “due to the events on Sept 11″.

A few weeks later, we were in a big meeting at work.  It went something like this: Be aware of those around you that may have been affected by the events, be aware of clients needs, but GET THE NUMBERS”  The world around us had changed forever, and all they really cared about was the bottom line.  It was then, I knew I needed a change.

Earlier that summer, I had spend a week at Camp Fatima during its Exceptional Citizens Week.  “EC Week” is a special week for people of all ages, with Special Needs.  Each camper has his/her own staff with him/her the entire week. There is Arts and Crafts, Swimming, Entertainment, all that you would expect at overnight camp.  Often people with special needs, can not go to a “regular” camp, so they can come here.  It is a wonderful week, Free of charge.  The campers have a great time, and the families get a much needed break.  http://www.ecweek.org/index.html

That week had a huge impact on me.  After being there for a week, I saw there was more to life than just sitting behind a desk all day, making a whole lot of money.  I decided that I wanted to do more with my life.  My mom wisely suggested that I trying volunteering at different things, and perhaps working my budget to see if I could actually live off less, as people in that field do not make a lot of money.   I started doing some respite work, as well as volunteering at Perkins School for the Blind.  With one individual, he was living alone, so I was more of  a “companion” for him, and helped him with his bills.  We would go out to Dunkin’s and just chat for a bit.  The other individual was a young woman who still lived at home. I became a “big sister” to her, and while we do not get together as often, I still do things with her.  We have a wonderful picture of her and Alexander just after he was born.  She had a wonderful way with him

My volunteer work at Perkins eventually led me to apply for a job there.  In June of 2002 I began my work in the Human Service Field.  I worked there for about a year, then spent a very long three weeks working with autistic children.  They showed me the nice calm 5 year olds during my interview, but then put me with the not so calm 11 year olds!  I am glad there are people that are able and willing to work with those children, but I was not one of them.

I took a little bit of a break for a while, then worked with Adults with Brain Injury.  During my interview, one of the people said “why don’t you go to LPN school?”  I had never heard of LPN’s, never thought about nursing school, but looked to it, and off I went!  It was a long process for me that took me to two schools, but in the end I did it and I am very glad I did. (but that is for another post)

So, I didn’t lose anyone I knew and loved on 9/11/2001, it did have a profound impact on my life.  Would I have become a nurse if it had not happened? Maybe, maybe not.  But, I know that from that tragic day, something good did happen, and I hope that I can make a difference in the lives of my patients and their families, as I give them the love and care they deserve.

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Anger

During Alexander’s Treatment, I never really got “angry”.  However, this week – I have been feeling a lot of anger. I don’t know where it is coming from – maybe from all the posts I have been seeing on Facebook about Childhood Cancer Awareness Month.  It isn’t a mad angry, more of a sad angry.

 

I am angry that:

  1. Alexander Died.
  1. That all but one of the kids we knew or knew of with neuroblastoma have either died or had a relapse
  1. That researchers are working on new ways to target neuroblastoma, but that it is too late for my Alexander
  1. That there it takes MILLIONS of dollars to run for President – (I have seen $20,000 a plate dinners !), but really that money could go for so many BETTER things!  If only we could have a $20,000 a plate dinner for pediatric cancer research!
  1. That I have made a ton of new friends this year – friends I should have NEVER met, but because of STUPID CANCER and because Alexander died, I have met them.  (However, I will also add that I am VERY glad I had these friends during Alexander’s treatment and that I have new friends to support me on the journey on the “other side” of cancer)
  1. That even those kids that make it into Remission, may end up with many lifelong side effects.  Hearing Loss, infertility, damage to organs and other body functions, risks of SECONDARY cancers!
  1. That Alexander died.

 

 

 

To help with all this, I do try to do things that are POSITIVE!  I like to give back to the unit that Alexander spent most of his time on.  I have done Easter Baskets and Christmas Stockings as well as some other things. It is fun buying them for the kids and imagining their reactions.

 

I would someday like to be a Parent Advocate in a hospital, to help those families going through what we went through.  I want to be able to teach other parents to be a “Mean Mommy (or daddy)” and to stand up for their children when needed.  Too often parents will look to a doctor as a god, and just listen because the “Doctor” said so.  One time I had a resident trying to tell me that Alexander’s heart rate was “okay”, and it was low from the medication.  I knew that he was wrong – it was normal for a kid is age, but not for my Alexander!  Thankfully, the nurse knew Alexander well, and helped to get a more senior doctor involved.

 

 

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Going GOLD for September!

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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