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Missing Alexander and other thoughts

on August 12, 2011

About two weeks ago, I posted on facebook that I was feeling very “peaceful” regarding Alexander’s death.  Perhaps it was our trip to California that brought that about.  He was with us in a lot of ways.  Richard Saw bubbles one day in San Francisco.  We went to Alexander Vally in Sonoma Wine County.  Our family honored him in a memorial garden.  On the way back, we saw a sign that said “now serving lunch”.  When we got our menu, we saw the name of the restaurant was Alexander’s!”

These last few days though have been very different.  I have been missing him so much!  Really, each day is different for us. My cousin’s husband mentioned Alexander in a post this week –  – the comments he got were wonderful, but also got me going in my sadness this week.

This weekend I was able to attend a celebration party for another child we met at the hospital.  This little girl was born with a brain tumor – totally crazy I know!  Thankfully, she is doing WONDERFUL and is tumor and cancer free!   I am so happy for her and her family.  I don’t want to say I am “Jealous” of them, but I do wonder –   Why were we not celebrating Alexander? There was even another little boy just about the same age as Alexander with the same kind of cancer.  As far as I know, he made it through his treatment with flying colors also!    I would never wish ill on any other family of course – but I do wonder – why him?  What did they do differently?

But I know, that cancer is evil – and it affects everyone differently.  There is no reason why some kids (or adults) do better than others.  It doesn’t make it any easier of course.  in the 13 months that Alexander was treated two other children that we knew also died.  One was just a year old (Brain tumor) one was 9 years old (Kidney cancer)   Such short lives – but I know that like Alexander, both of those children had a huge impact on the world.

Today we got a call from Children’s Hospital – the place where Alexander had his surgery and died.  It was the ICU and they wanted to know how we were doing.  I thought it was very nice of them to check up on us.  It was very strange to be over there.  All of Alexander’s other treatments were at the Floating Hospital for Children.  “His” doctors and nurses were there.  We were strangers to Children’s.  But, from the way the woman on the phone was talking to me, it sounds like, despite Alexander’s very short stay, he had a HUGE impact on the nurses and the doctors there.  Perhaps because his death was so unexpected? It was the ICU, so they do deal with death, but it just wasn’t suppose to happen to Alexander.  At least not then and there.  The woman also told me that the surgeon was also very shaken up by his death – wondering if he had missed something, done something to cause it unwillingly.   We have spoken to him several times also, and we could tell how upset he was.  We have learned that his tumor was just so aggressive, that the chances of him ever beating his cancer were very slim.  But yet, we know we had to do the surgery to give him the best chance possible.

Someone asked me once if we knew that death was a “possibility” from the surgery.  When you have cancer, it seems like death is always a “possibility”.  At the bottom of just about every consent form, it says “death may result”.  So many things with cancer treatment might kill you.  But yet, without them, it will kill you!

The latest facebook “craze” is to try to get Ellen Degeneres to do a show about Childhood cancer.  It was “tried” in the last weeks of Oprah, but did not work.  I really do hope that she does do such a show, because it really does need more attention.  I grew up watching the infomercials for St. Jude’s Hospital, and of course being from Boston heard about the Jimmy Fund.  As a teen I read a book about a girl that had cancer – and I saw tv shows with kids that had cancer on them. But really, even as an adult never really believed that kids got cancer.  I mean, kids don’t smoke and do all those “bad” things that can give you cancer.  It wasn’t until March 8th 2009, that I learned – yes, kids really DO get cancer – and they can die from it too.

The really sad thing, is how little funding there is for Childhood Cancer.  “Only” about 650 kids a year get diagnosed with Neuroblastoma – too many really, but so few in the scope of the Cancer world.

Below are some facts about Neuroblastoma and childhood cancer.  Scary facts I think

  • Neuroblastoma is a common and often difficult to treat cancer, the most common cancer in infancy. (UCSF)
  • In the United States, about 600 children are diagnosed with neuroblastoma each year. (UCSF)
  • It is the most common tumor found in children younger than 1 year of age.
  • Childhood cancer is the number one disease killer in children.
  • Neuroblastoma is the most common extra cranial solid tumor cancer in children.
  • Every 16 hours a child with neuroblastoma dies.
  • There is no known cure for relapsed neuroblastoma.
  • Nearly 70% of those children first diagnosed with neuroblastoma 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.

 Childhood Cancer Facts

  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • 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.
  • 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.
  • Every school day 46 children are diagnosed.
  • 1 in 330 children will have the disease by age 20.
  • Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
  • 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.
  • Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
  • 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.
  • Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
  • Treatment can continue for several years, depending on the type of cancer and the type of therapy given.

What Causes Childhood Cancer?

  • Every family is potentially at risk.
  • In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
  • As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
  • Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.

Cancer Research Funding

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.

5 responses to “Missing Alexander and other thoughts

  1. Jackie Goodell says:

    ALways thinking about you and your ALexander…. Jackie Goodell in NJ

  2. jane says:

    why why why why why why is all I ask too…..why some and not others, why a cure for some and nothing for others….my mom is supposed to be here now!!!!!!! I still feel that everyday Nancy

  3. Erin M. says:

    Nancy, thank you for all those notes and statistics! It is unbelievable, but so true. Alexander has brought MUCH attention to this, and I fully believe that his life will be directly responsible for a chain of events or reactions that will cause change in at least some of those. Thanks to your words. Continue to write, and we continue to pray for you every day.

    • thecookiegal says:

      Erin – that is my greatest hope for Alexander – that his life, short as it was will make a big difference in the world. A cousin of Richard’s who went to medical school at Tufts was back there recently. He said there was about 8 or 9 residents he spoke to and they ALL had an “Alexander story” to share! I hope that they don’t soon forget him, and use his as an example that kids don’t always “follow the book” when it comes to being sick!

  4. Mary DeWinkeleer says:

    Those are some really sobering facts you posted. Thank you for sharing them, and helping others become more aware of what is out there. I imagine you are always missing Alexander, but sometimes it feels more intense than other times. I’m looking forward to seeing you next weekend and catching up. We just got back from our trip last night, so I just got your message. Let’s catch up today. I miss you!

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