thecookiegal

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Missing Alexander and other thoughts

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 – http://rad-ventures.com/2011/08/05/alexander-the-great/  – 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.
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Prayer

This past year we have had many people praying for us.  Praying for a HEALING of Alexander, praying that we would make it through each day.  Prayers for peace as we faced the lose of our beautiful little boy.

I have always believed in the power of prayer.  Studies have even been done, that have shown that prayer does work to help in the healing process.   But what happens when we don’t get the answers that WE want from our prayers?  After Alexander died, I did wonder for a bit “did I not pray enough? Did I ever actually ASK for him to be healed of his horrible disease?”.  But deep down I know, that God does answer all prayers, but that sometimes the answer is NO.  This is not something we like to hear – and it is very hard for us as humans to accept.

Why are some people healed from their cancer and others are not? Why do some kids fly through their treatments with only a few side effects, while others, like Alexander get the rarest of side effects?   There are no easy answers to these questions – I don’t know that we will ever have an answer other than everyone is just different, and everyone responds differently.

How then can we word our prayers? If we know someone that is waiting for a new heart, how can we pray that they will get one, when by that prayer being answered, another family has to face the death of their loved one? Are we then praying for someone to die?  Again – no easy answers.

When are prayers are not answered in our way what do we do then?  I am sure often then people are angry with God, and you know what? HE can take it!

Pray for those that are taking care of someone too are wonderful – for safe and gentle hands for the doctors and staff as they take care of those in need.

I think the best prayers we can offer up, are prayers for PEACE, for those that are going through difficult time.  Prayers that they will find the strength, the will just to make it through each day.

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Follow up thoughts on previous posts

I had a few thoughts on a couple of posts I had put up.

The first is on the Technology Post.  I was watching an episode of Little House on the  Prairie, and thought about how lives was back then – without technology.  People would go years maybe without getting to see a loved one.  Mail was there, but I am sure it could take weeks for a letter to reach you.  memories were made, but there were no photos to capture those events.   Even just 10 or so years ago before digital photography was so popular, we didn’t take as many photos.  I remember reading the book “Alex the Life of a Child” a story about a little girl that died from Cystic Fybrosis when she was only 8.  her dad said “we never had the flashbulbs for the camera when we wanted them”   Alexander had THOUSANDS of photos taken of him – well over 4,000 in fact!  Amazing for such a short little life.   We were able to share photos of him with those that couldn’t visit.
If it wasn’t for our carepages I don’t know where I would have been!  Writing those updates each day, helped me to deal with everything that was going on.  It also kept me from having to repeat myself over and over again! Reading everyone’s uplifting messages kept me going.

 

Okay – my other thought was on Generosity.  I wanted to thank everyone again for being so generous in so many ways to us.  I also wanted to let you know that thanks to people’s generosity, over $5,600 was raised in Alexander’s name for the Cycle for Life.  The Cycle for Life is the main fundraiser for the Child Life department at Floating Hospital for Children.  They are the ones that help the kids deal with all the crap they are going through.   They are also the ones that first introduced Alexander to BUBBLES! (I would have eventually of course, but they we the first!)

in June my friends put together team Alexander the Great for another fundraiser for the hospital.  We raised $3,600 for the Pediatric Hematology/Oncology Clinic!    Again THANK YOU!

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Be Generous

As Dr. Mark Green was Dying on an Episode of ER, he imparted these words to his Daughter “be Generous”

Very good and thoughtful words. This past year, we saw the generosity of MANY people shine through – family, friends, and even strangers. Without them we would have been lost. Even the little things meant so much to us.

I did a google search, and I found this definition which I liked best:

Definition of generous (adjective)
benevolent; giving; unselfish; abundant; plentiful

 

I have always tried to be generous with the money I have been given through work, even when it is not a lot. When I was a full time volunteer making $50 a week, I still gave my 10% away. I never was short on money (thankfully gas was only about $1.50 a gallon back then!), and I always had enough to eat. Many Churches teach about giving 10% to the church – Personally, I like to “spread the love” and give my money to as many charities as I can. I think you have to do what is right for you in your heart.

here are a few of the Charites that I believe in:

http://www.jennifercreed.org/   (paid for ALL of our parking in the hospital!)

http://www.camneelyfoundation.org/

http://www.neads.org/  (provides service dogs)

http://www.birthdaywishes.org/   (brings Birthday Parties to homeless children – great gift alternative!)

 

Of course, not everyone is able to do that. Even just $5 can mean a lot when you are raising a family, or struggling with an illness. But do you have time? I know everyone is “busy” in life, but can you take just a few hours of your time to give blood? http://www.redcrossblood.org/
Alexander had so many blood and platlete transfusions. I will never know how many donors gave up their precious time for HIM. I am forever grateful to the strangers that gave their time to save a life.

Perhaps you could give up a relaxing Saturday afternoon to take time to build a house? http://www.habitat.org/ It is amazing feeling, putting a nail into a home for someone else!

Can you sew?  Maybe you can make pillowcases for kids with cancer!   http://www.conkerrcancer.org

 

Whatever you do, do it well, and with a giving heart!

What I do you cannot do; but what you do, I cannot do. The needs are great, and none of us, including me, ever do great things. But we can all do small things, with great love, and together we can do something wonderful.

Mother Teresa of Calcutta

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