Tuesday, May 7, 2013

Our Story Pt 2

You can read Pt 1 here...

Just to jump back a little ...Taylor had been super healthy and had not even had a band aid placed on her before that July....

We returned home to find a new normal.....the medication was quite complicated and very specific to her and how she would react after each dose . This meant that for weeks we spent trialling doses and times to give medication that were now effectively synthetically balancing her body.

We were introduced to the Endocrinology department who were to be one of our biggest advocates through this whole journey. We had an ophthalmologist,dietitian, neurologist and were loosely attached to the oncology ward.....they proved to be our biggest adversary at times. 

Over the following months we were seen as an outpatient for all appointments and had three monthly MRI scans to monitor the tumor activity .These needed to be done under general anesthetic due to her age and the need to be very still....which also then meant that she needed to fast for many hours.....no fun for a little person with no satiety or hunger suppression....we learnt many technics for food diversion. Do you know how many vending machines they have within the walls of a hospital!!!!!

We plodded along until mid 2000...we now had a one year old and were making the adjustments that were required . A routine MRI showed  that there was some potential movement of the tumor...the new game plan was to avoid surgery and tackle it with radiotherapy.

There began our first battle with the oncology/radiotherapy department....by now we had really found our feet and knew exactly what it took to be Taylor's advocate. We knew that treating her with full head radio therapy at the age of 3 was not something we were prepared to do. We did some of our own research and finally were granted the support to send us to Sydney for a new type of radiotherapy that would be very localised and would minimalise the damage to her developing brain....

We packed up and moved our little family for a 10 week stay. Living at the 
Ronald  Mc Donald house in Randwick was a fantastic experience and one we would have been very lost without. Not only did they provide a roof...but often food and plenty of company in the way of new friends traveling and equally tough road.
 So for eight weeks Taylor underwent a daily general anesthetic and  radio therapy session......She coped so well...didn't lose an ounce of her beautiful hair and was hardly ever ill...we would spend weekends sight seeing and taking in fresh air only to head back on Monday for the next week.

By the end we returned home and the next MRI showed that we had some minor reduction and slowing which would hopefully continue.

Taylor had been at Kindy since the beginning of that year and after our little "holiday "she  returned to finish the year well. Her weight was a constant battle....medication was our worst enemy in fighting this. They had told us that she would have little or no growth due the disturbance her hormones had endured......she was the tallest in her class by far...was the first to loose teeth in her class and had developed  a personality and heart that was bigger than any of her class mates too. She battled with tiredness too ..often I would arrive to find her sound asleep in the bean bag.

This personality was what helped her all the way through to communicate both her wants and very loud dislikes...of which there were many when  it came to intrusive  medical staff. Her personality and character both drove us to laughter and despair at times when we ran out of persuasive tactics...food bribes had to be out of the question ...well on the odd occasion.!!!

Our family, church and friends were extremely supportive and encouraged us the whole way both with their presence and their prayer support.    

We did well and maintained ground until a day in February  2002......


to be continued...


  1. oh Bron what a battle to have gone through and to re-live xxx

  2. Sweet little princess! I love the pictures and her sweet smile xxx

  3. What a journey - thank you for sharing - Hope you are ok x

  4. Bron, she was such a beautifl child.

  5. Thanks for sharing Taylor's story

  6. Lovely pictures!
    And thank you for sharing your journey.

  7. thankyou for sharing your special story. I love the way you write xx


Thanks for stopping by and saying Hi....I love having your support. I will do my best to pop back to you and say hi. xx


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