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Lisha View Drop Down
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    Posted: 07 August 2008 at 10:23am
As I have reading an article on Stuff about a 4 year old and her journey through Acute Leukaemia... then it had a link to another little boy who only passed away yesterday, at only 15 months!

It got me thinking, about my two very beautiful daughters, what if this happened to them, I know that it would be so devastating for myself, DH and our family, but I know that somehow you would cope. I was putting Zoe down for a sleep with tears streaming down my face, she was looking at me with a concerned face at only 8 months, that made me cry more.

I am not a reliqous person but my prayers go out to families who are going through such difficult times with their sick children.

Awwwww.... Big Mushy Hugs To All!!!
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ginger View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ginger Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 10:33am
My cousin's ex-wife remarried and had a gorgeous little girl, who was born with leukemia (presumably anyway, it was picked up within a few months of birth). It was the most horrendous thing for her and her husband to cope with, and the thought that that beautiful little girl didn't stand a chance and only knew pain in her very, very short life even now horrifies me. I can't imagine it.
Cuinn Lachlan 23.1.09 - 22:00
Antonia Helene 4.8.11 - 09:41
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Lisha View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisha Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 10:36am
That is sooo sad! Here I go again! Have a massive lump in my throat.
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Daizy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Daizy Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 11:18am
Oh no.. you are going to get me started too


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MrsMojo View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsMojo Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 11:24am

My big brother had a cancerous cyst behind his ear.  It was discovered when he was 9mo.  He'd had a fall while walking around the furniture and had knocked his head on the table.  My dad checked his head for injuries and they found a lump behind his ear.  They assumed it was a bruise and did nothing about it.  A week later dad checked his head again and the lump has grown and become squishy.  They took him to the doctors and found out that their 9mo son had cancer.

Their world was destroyed.  All the hopes and dreams they had for him shattered.  It was 1976 and surviving cancer was not common but my brother (like so many sick children) is a fighter.  He had the cyst removed and then underwent several courses of chemotherapy.  Before then they had never used such strong treatment on anyone that young anywhere in the world (he even made it into the papers) they told my parents he wasn't likely to see his first birthday. 

The cyst was so large that when they cut it out they couldn't stitch the skin together so he wore dressings for months and mum and dad were told to never let him get upset (because the wound could open at anytime)... can you imagine having a toddler who you could not let cry - he was treated like a little emperor until about 12 months after the operation until the doctor said it was ok, the wound had finally healed completely.

 His first birthday came and went and the doctors had to revise their predictions and told my parents that Pete would never be able to walk or talk and that he wasn't likely to make it to adulthood.  The side affects of cancer treatment can be awful.  His hair didn't start growing until he was school age and they suspected his speech and mobility would be permanently affected. 

 Mum and Dad took Peter to physical therapists and speech therapists and although he hit his targets much later than most children he learnt to walk and talk.  He walks like a drunk and he talks slowly but that's a darn sight better than predicted.

Peter turns 33yo in a couple of months.  The side affects of the cancer treatment have left him with severe frontal lobe damage and cerebral palsy. 

 

When my parents went through all of this, when my brother was first diagnosed, there was no Child Cancer Foundation.  They had no additional support and had a really hard time.  They were in and out of hospital regularly so had to make sure they always had enough money for transport plus there's the cost of medicines and growth hormones etc.  Some weeks they had to chose between buying milk or bread.

 

My parents were at the meeting in 1978 when the Child Cancer Foundation was founded and we have been supporters and volunteers ever since. 

 

Every year I organise collection sites on the annual appeal days and I've also been involved in one of their "funrazors" (where people shave their heads to raise funds).  I have been lucky enough to meet some of the beautiful children who with their families are suffering of cancer.  One little girl, called Sophie, really touched my heart.  On the day of the funrazor she was dancing and singing and posing for my camera and so beautiful the way her lovely bubbly personality shone through despite the bald head and tubes sticking out of her nose, taped to her cheek.  According to her mum she'd just been discharged and allowed home after basically living at the hospital.  She was 3yo but her strength was so obvious and much greater I think than mine is, than most adults have.

 

I guess there was no actual point to this post except to say  to all the amazing children with so much inner strength and  to their families.  Although I've heard dozens of stories of what they go through and I know my own family went through it too (when I was much to young to realise it wasn't normal) it still amazes me and I don't think I can ever imagine what a struggle it must be.

 

eta: Sophie had a relapse last year and passed away.



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Neeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Neeks Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 11:36am
Oh gosh!! Now I'm welling up too
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MrsMojo View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsMojo Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 11:37am

As a continuation of my post...because you got me started on a subject I'm so passionate about.

 

Back when my brother was diagnosed the survival rate was very slim but now of the 150 children diagnosed every year around 80% are successfully treated.

The Foundation's guiding principles are:

  • No child suffering from cancer, or their family should ever feel alone
  • A family has the right to be together during treatment
  • The most effective approach to treating childhood cancer involves families and health professionals working together

 

When a child is diagnosed they are then sent to one of the treatment centres (in Christchurch, Wellington or Auckland) often with barely enough time for the parents to pack let alone come to terms with the diagnosis.  The Child Cancer Foundation gets in touch and initially provides a sports bag full of useful goodies.  This includes petrol vouchers, meal vouchers, tooth brushes, stamps, writing paper and envelopes, a pink panther doll and heaps more. 

 

The foundation also provides:

  • Individual and group support with opportunities to share concerns and experience and practical support
  • Some financial assistance
  • Provision of up to date information about cancer and treatments
  • Availability of accommodation facilities close to all major treatment centres
  •  

    They also do:

  • Promotion of educational resources, workshops and seminars
  • Lobbying for equitable access to high quality treatment and follow-up assistance
  • Promote, encourage, arrange and assist in any manner research into the causes, treatment and prevention of childhood cancers and all other forms of the conditions commonly known as cancer. (including research into the affects of cancer treatment on growing bodies)
  •  

    One thing you might not know is the the Cancer Society and the Child Cancer Foundation are 2 different entities and the CCF does not receive any support from the CS (and visa versa).  The CCF does not recieve any government funding either, it relies purely on the support of business leaders, community groups and caring citizens who are committed to changing the impact that childhood cancer has on children and those who love and care for them.  The CCF does support Ronald McDonald House (a couple of years ago they allocated quite a bit of money so RMD House could purchase more land to expand on), mostly because a lot of their families end up being housed there at one time or another.

     

    The annual appeal is usually at the end of March every year and if you or anyone you know want to volunteer for the street appeal just pm me nearer the time, whether you're in Wellington or further afield I can put you in touch with an organiser in your area.  In the meantime if you want to find out more about the foundation or what you can do to help check out www.childcancer.org.nz

     

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    caitlynsmygirl View Drop Down
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote caitlynsmygirl Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 1:05pm
    A poem , that reminds me of this topic

    "To My Child (Just For Today)"

    Just for this morning I am going to smile when I see your face, and laugh when I feel like crying.


    Just for this morning I will let you wake up softly in your flannel p.j.'s and hold you until you are ready to stir.

    Just for this morning, I will let you choose what you want to wear, and I will say how beautiful you are.

    Just for this morning I will step over the laundry to pick you up, and take you to the park to play.

    Just for this morning I will leave the dishes in the sink, and let you teach me how to put that puzzle together.

    Just for this afternoon I will unplug the telephone and keep the computer off, and sit with you in the garden blowing bubbles.

    Just for this afternoon I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck and I will buy you one, if he comes by.

    Just for this afternoon I wont worry about what you are going to be when you grow up, or how you might have been before your diagnosis.

    Just for this afternoon, I will let you help me make cookies, and I wont stand over you. . . trying to 'fix things.

    Just for this afternoon, I will take you to McDonalds and buy us both a 'Happy Meal' so you can have two toys.

    Just for this evening, I will hold you in my arms and tell you the story of how you were born, and how much we love you.

    Just for this evening, I will let you splash in the bathtub, and I wont get angry when you pour water outside the tub.

    Just for this evening I will let you stay up late, while we sit on the porch swing and count all the stars.

    Just for this evening I will bring you glasses of water, and snuggle beside you for hours, and miss my favorite TV show.

    Just for this evening, when I run my fingers through your hair as I pray, I will simply be grateful that God has given me the greatest gift ever given.

    I will think about the mothers who are searching for their missing children,
    the mothers who are visiting their children's graves instead of their bedrooms,
    and mothers who are in hospital rooms watching their children suffer senselessly and screaming inside that they can't handle it anymore.

    And when I kiss you goodnight, I will hold you a little tighter, a little longer.

    It is then that I will thank God for you, and ask him for nothing...

    except just one more day.
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    Jay_R View Drop Down
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote Jay_R Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 1:33pm
    Oh My
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    Lisha View Drop Down
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisha Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2008 at 1:59pm
    Thanks so much for all the details on the CCF, I do donate to them and will continue in the future
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