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September is Childhood Cancer Awareness Month

on September 2, 2011

The president has declared September to be Childhood Cancer Awareness Month

http://www.whitehouse.gov/the-press-office/2011/09/01/proclamation-release-national-childhood-cancer-

awareness-month-2011

I am sure it will go by for most without much fanfare.  There won’t be any Gold (the color for Childhood cancer) Lids on the Yogurt tops, or people Petitioning Facebook to go “Gold” for a month.  For most, the month will go by as any other – the start of school, a long holiday weekend, thoughts of Apple Picking and all that goes with it.

Of course, this year, much of the month will be taken oven by Memorials of that tragic day 10 years ago when are country was forever changed.  I do not want to take away from any of that, but I also do not want this month to go by without notice.

Although for me, two years ago, this month meant only those things I have already mentioned – in addition to remembering my dad’s Birthday.

Before then, I “knew” that kids got cancer, but I never really thought much about it beyond that. I supported the Jimmy Fund Every year by eating ice cream at the Scooper Bowl  and bought the raffle tickets at Stop and Shop and Burger King every year.  I knew about St. Jude’s hospital, and remember watching the shows looking for money.   As a kid, I read a book about a girl who got cancer.

Outside of those things, I never really gave it much thought.   That is until March 8th, 2010 when I heard those horrible words “I am sorry but we found a mass in Alexander’s Abdomen”  The next few hours were a whirlwind of activity.  We met Dr. Kelly and his Oncology team, we were brought to the Pediatric Cancer Unit.  I was in the hallway and a woman came up to me saying “I am not really meeting you, I hope I don’t have to really meet you, but in the mean time here are some gift certificates and parking tickets”.  Alexander was brought to MRI where he was fully sedated.  We left him there wondering “what the hell just happened, and will we see him alive again?”  The next days were filled with so many tests and questions.   Our once happy little boy, wouldn’t give us any of his wonderful smiles.  He was in pain, a lot of pain.  He had a surgery to put in a central line and do a biopsy, he started chemotherapy.  We started down a long road.

When were first found out Alexander had Neuroblastoma, we were told that because they caught it before the age of 1 he about an 80% chance of beating this horrible disease!  We would take that percentage.   Of course, as time went on, we learned that Alexander didn’t “read the book” and decided to be more of a challenge.   While he was showing some signs of improvement, he was not progressing as they would like him to.  It was time for a change – to a new High Risk protocol.  His “odds” went down at that point, and after that I never asked again – I didn’t want to know – I wanted to focus only on the GOOD, even if it was so little.

The fight went on, and at one point, he had some good scans, and good lab reports.  We thought we were doing okay.  But that how it can be with cancer, wait just a minute and things will change in a heartbeat.  Another scan, more labs tests, not so good results.  It was decided that his only hope was to get more of the tumor out.  The doctors worked hard – very hard for 16 hours.  However, Alexander’s little body and heart just couldn’t find any more and he went home to be with the Angels.

We have talked to do of the doctors that were at the surgery as well as a nurse at the hospital. Everyone was very upset about his death.  It was not “suppose” to happen (but then kids aren’t “suppose” to get cancer but they do)

It has been 5 months since we lost Alexander, and 18 months since we heard those horrible words.  Our lives have been profoundly changed forever.   Changed for the good, because we had Alexander in our lives, even though it was for a very short 21 months, he was the joy of our lives. Even in his sickness, he brought great happiness to those around him.  I know he taught the doctors, nurses, students a lot, and that he will not be soon forgotten.  During his 13 month treatment we met some wonderful families.  People we would not have otherwise met.  Some of those kids beat their cancer, some are still fighting, and some lost their fight like Alexander – Dury – 1 year, KerriAnne 9 years 9 months, Thomas – 4 I think.

The loss of Alexander is a sadness I can not really describe but I will try to explain.  The house is so very quiet now.  No laughter, no crying – just silence.  Our days are spent sitting at the computer or watching tv, because when we aren’t working we don’t have anything else to keep us busy.  I look at his pictures every day around the house, and remember how wonderful he was.   When I am out I sometimes think “oh Alexander would have liked this or that” and get very sad because I am not able to show him things, or teach him new things.  It makes me sad to think that if we ever have another child, he won’t get to wear an “I’m the Big Brother” shirt, and do all the things that a big brother does.

So – what do we do now?  We move forward – one day, one hour at a time.  We continue to pray for those that are still fighting, and for those looking to find a cure.

What can YOU do?  Below are a few ideas for how you can support those fighting childhood cancer:

1.  Call your local Children’s hospital – ask for the Childlife department and see what they need.  Maybe you can donate new toys? Make blankets? Fun sheets for the hospital beds. Hold a BandAid drive (for the fun ones!)

2.  Eat at Chili’s on Sept 26th!   http://www.createapepper.com/BigDay.aspx

3.  Hold a lemonade stand: http://www.alexslemonade.org/

4.  Have a bake sale: http://www.cookiesforkidscancer.org/

5.  Make Pillowcases: http://www.conkerrcancer.org/help.html

6.  Support a family in need (our friends)  http://colenh.com/september_8_2011_-_2nd_annual_cole_stoddard_fundraiser

7. Ride  a bike! http://www.cycleforlife.com/faf/home/default.asp?ievent=478337

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7 responses to “September is Childhood Cancer Awareness Month

  1. jane says:

    Nancy….you have such a beautiful manner of expressing the grief …..I am amazed by the words you offer…it is so true….the “I’ll never get to do this or that anymore, with this person I love.” We think of Alexander the Great everyday and realize the precious -ness of life because of your little guy.

  2. Mary DeWinkeleer says:

    Beautifully said, Nancy. I am so glad is a month for children with cancer. I hope someday this month will as well known as Breast Cancer month and the color pink. I have a feeling you and Richard will be a big part of making that happen!! You two amaze me at how hard you are working to help as many people as possible aware of STUPID CANCER. I can’t wait to make pillowcases with you!

  3. Love to you and Richard! You know I’ll be there sewing pillowcases with you! 🙂

  4. Marge lukas says:

    Nancy, That was beautifully said. I don’t know if they do this anywhere else but in the Cleveland area each Labor Day weekend all of the fire stations set up road blocks in front of their fire stations. Throughout the days they have firemen hold out one of their boots to collect money for St. Jude’s hospital. Each station always brings in at least $10, 000 dollars. Today as I made my donation I thought about Alexander and I told the fireman about him. All of a sudden I just started crying. The poor guy didn’t know what to say!

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