Our Story Pt 3

You can read Part 1 and Part 2  here

We find ourselves at the start of 2002..Taylor is nearly 6 years old and Meg is nearly 3 years old.....

We had spent very little time within the hospital system as an in patient..actually none apart from her initial diagnosis and surgery.....so we thought we had managed really well and often knew more about her specific condition and needs than most of the doctors and nurses we met.

A routine scan in the first week of February just as she started Year 1 sent us into a new spin....this was the one and only  follow up meeting that I did not attend and left Derek to hear what was supposed to be routine results ......WRONG.... did I regret missing that one....the tumor had taken off again and this time our neurosurgeon ( who was nearing retirement!!) was not keen on any more surgery and proposed a plan that sent us in a spin....

Perhaps we should do some "temporary measures" that would buy her a little more time but in his opinion we didn't have many options!!! OMG was he serious.....We had not fought this hard to  to give up now.....especially as to look at her you wouldn't even know that she was sick.

She used to greet you with her huge personality...but never once did she say "hey I have a brain tumor."

By this time there was a ground swell happening in Western Australia with the care of a number of children also with brain tumors.....so now that we were well and truly in this exclusive club we were privy to information that others were researching ....research was the key and that is exactly what we did, as in the case of her radio therapy treatment....

In a huge whirlwind decision we contacted Dr Charlie Teo in his Sydney private rooms...he could squeeze us in the next day if we could make it.......

We booked and jumped on a plane in a heartbeat. Literally flying all night and landing on friends doorstep unannounced for a shower and then our meeting with "Dr Charlie"

He was like no one we had ever met ..well in the medical field anyway...he gave us a realistic diagnosis...he gave us hope.....he gave us the plan forward...he shared his heart with us and we knew we needed to do this.

We flew directly home and met with family to plan away to raise the $60 000 we would need to proceed....we had no private health cover and that was the only way he could operate.....that is another story of how shameful our traditional medical fraternity are and a story that continues to make my blood boil....

Well we did raise the money....a miracle it came from far and wide...community, family, strangers and any that heard her plight...all without us having to do anything!

Surgery was mammoth....another 11 hour procedure that was seen as a success removing most if not possibly all the tumor.....a couple weeks stay and a beautiful dinner with the Teo Clan and then it was home to return to school  and one of the biggest gifts we have been given....

Make a Wish granted Taylor's wish of a "Fairy Garden"...(this is really another story I will share later) we live today with that generous gift and are so thankful for the generosity that brings so much joy to us as a family.

The usual problems persisted...weight control....managing lack of thirst drive,steroid side affects but life trucked along and we were essentially a normal family. People used to wonder if we pushed Taylor too hard...in fact she was the driver...insisting that life be normal .....wanting to do and be apart of what every one else was doing. Derek was making the most of a new found love of triathlons and I was back teaching part time.

We were so grateful to Dr Charlie...who now had a teddy named after him   ...he was realistic but knew we had to go hard and he had the skills to do so....we wished we had found him in the beginning.....

 

to be continued....