Sarah Jane

Welcome to the beautiful Miss Sarah Janes's Web Page. It has been provided to help keep all the lovely people who care about her updated about her treatment.

Since the 22nd of November 2004 our world has been one continuous nightmare.

Our Beautiful fun loving toddler was diagnosed with embryonal rhabdomyosarcoma a highly malignant and nasty soft tissue tumor. It was the size of a baseball and had compressed all of her organs. Since then our little girl who loves the beach, being outside, running, jumping on the trampoline and all the normal messy things for a two year old, has had to endure many painful procedures. She has had 31 doses of chemotherapy with many nasty side effects, 45 doses of radiation on 7 different fields, 5 cat scans, bone scans, xrays, ultrasounds, lumbar puntures, bone marrow asperates, weekly dressing changes on her central line, way too many blood tests, 3 major surgeries, lost half her bladder, had all her major organs squished from the tumor, 9 whole blood transfusions, 5 platelet transfusions and way too many complications and admissions.

During all this time she has become an inside child, she can't get wet as she has a central line, no trips to the beach certainly no playing outside without shoes on. Whenever we are home she is really restricted with what she can do as she is so often neutropenic so there is no exposure to germs. If her brother and sister get a cold they have to isolated around to their grandmothers. So hard for a little one to understand. she is so tolerant and inspires us all, we have certainly learnt a lot from her.

Treatment is coming to an end soon and then comes the horrible part of waiting to see if the tumor returns. The Drs think it is highly probable as she had such widespread disease and that is very upsetting to us all. We just have to take heart that the tumors have responded well to chemo and she has so many people praying for her. Her marrow is taking a long time to recover from the radiation and we still have one more chemo to go.

I have to share a story about Sarah. The other day Jodie was in the shower washing her hair. Sarah comes to me and asks if she can wash her hair too (she had none at this stage) I asked her if she had looked in the mirror lately. So off we trot to the bathroom mirror and lo and behold..no hair. So possy says uh oh no hair. We often catch her brushing her imaginary hair. so cute. She does have a peach fuzz at the moment and stubby eyebrows. they will probably fall out next week..she does look very cute with no hair.


Our last chemo was on the 1st of August and it took her a long time to recover this time, although recover she did. We requested that her central line be removed as we wanted her to experience as much life as she could before her first assessment. She has been busy going to the beach, horseriding, feeding dolphins, watching the whales, wiggles world, dancing, swimming and running and playing in the backyard. What a busy little girl. She certainly knows how to enjoy life...
Her first ct scan was at the beginning of October and thankfully it was clear. as of Thursday the 17th of November she is officially 3 months off treatment and after her scans she is still tumour free... We thank God for this miracle and continue praying that it will never relapse...that she can continue to live life to the fullest..



The clock of life is wound but once
And no-one has the power
To tell just when the hands will stop,
At late or early hour.

Now is the only time you own
Live, love, toil with will
Place no faith in tomorrow, for
The clock may be still.


A Hundred Years From Now...it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove.....but the world may be different because I was important in the life of a child....

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Happy Mothers Day to all the moms who work so hard

to keep their kids alive;

to keep their minds off their cancer;

who work so hard to get their lives back to normal;

who do whatever it takes to get their scans done and drink yucky stuff;

who make sure their other kids know they are just as important;

who makes sure they earn their wings smoothly;

to fight for their kids rights;

to find the right answers;

who cry in the bathroom so their child doesn't see their pain;

who then walk back in the room with a smile;

who empty urinals without complaint;

who smell chemo on their kids and hold them closer;

who help their child complete their life list before they die;

who reads endless journals & abstracts in the hope of a cure;

who after their kids are gone, continue to wake up everyday,

who amaze me each and everyday,

who love their kids more than anyone can ever imagine.

You are a special breed of mom.

Cool Slideshows!

Journal

Tuesday, August 19, 2008 11:11 PM CDT

Hospital Information:

royal Childrens Brisbane
Herston Rd
Brisbane

Links:

E-mail Author: mayteam@optusnet.com.au

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.