Our Story Pt 5

Part One, Two, Three and Four are here.

Again this coming year of 2004 we were to be blown away by the kindness of strangers and friends. It became our mission to get a vehicle* to transport Taylor to school , church and family functions. In the meantime we had the most loveliest Maxi taxi driver at our disposal.

Taylor worked hard and very vocally at her physio each day and had a love hate relationship with the lovely Silver Chain ladies. It was this stubbornness and independence that would see her make the slow improvements that were needed for recovery.

We really wanted to get her back to school and after much persuasion and discussions the school agreed to trial it. Each day we would go by Taxi and then I would return home...Taylor would stay with her assistant for half a day then we would make the return trip home. Where she would spend most of the afternoon resting and sleeping the outing off, right before her physio buddy and the girls for the shower routine arrived.

We learnt to use all sorts of gadgetry...hoists, shower gadgets, new wheel chairs...it was all part of moving forward. She just loved being at school and managed to hijack the class often with her antics....she was rewarded with leading  roles at the assembly  and a legion of friends to always be her assistant....these things are what we had prayed for and knew were possible.

Life seemed to be good...lack of sleep may have been clouding our judgement but we were excited about the decision to extend our family....which happened quite quickly.

During the October school holidays we had two important appointments to attend......

A 20 week baby ultrasound  and an MRI.......Taylor was bitterly disappointed that we chose not to find out the sex of the new baby......which miraculously enough was to be due on her 9th birthday......

The MRI proved to be the miracle we had been praying for.....NO SIGN OF TUMOR.....6 long years and we had made it to this point.....with much hard work from Taylor...persistence, patience ( although at times in short supply),huge amounts of pray and many tears and sleepless nights.

She returned to school on the Tuesday after the school holidays with what seemed to be a new resolve....we are not sure what changed but everyone commented independently that she had turned a corner....the physio, the teachers at school even the silver chain girls were suspicious of her co-operation...... She farewell her friends on the Wednesday with quite the fanfare which wasn't all that unusual   

Thursday the 21st October almost 12 months to the day since we returned home from the dark  4 months in hospital she awoke feeling unwell...

The routine usually was to dress for school before hoisting her out of bed then breakfast etc. So this morning I suggested that going to school maybe wasn't an option...oh my she was having none of that....so we dressed in school uniform and hoisted out.....something clearly wasn't right. I called Derek at work and we decided a trip into the hospital was probably the safest thing to do just in case...he came home immediately and we agreed that he would travel by ambulance with her and I would stay and pack a bag just in case we needed to stay.

By the time I arrived they were contenting with a grumpy hungry 8 1/2 year old that was not having a bar of being stuck in there.

In their wisdom they transferred us to ICU to see if they could determine why her blood and test results were coming back a little off......

Nothing unusual for us ..nothing was ever straight forward with our Taylor. As the day wore on she became a little more sleepy and unpredictable...they decided to sedate her and see if they could even her out a little.....

Life changed for us in just a couple of hours.......we found oursleves back in that original room of 6 years earlier being told that she has become very unstable and they weren't sure what was going on......

They told us to call family.......we did........the clock turned over 5 something........we said our goodbyes.......we prayed....cried......went numb....demanded for something to be done....went silent.....prayed some more......and were left wondering what just went wrong.....

Too much of something for her very brave heart.....not much to do with a tumor.....except the battle had been to hard....her strength just wasn't enough.....we couldn't do it for her.....we tried......but it wasn't to be.....

our precious, hugely engulfing , gorgeously stubborn big girl was needed somewhere else.

Now eight and half years on we still cry...we share her with Meg and Fraser constantly...life changed that day...we changed.     

Thank you for sharing in our story...so many details left unsaid so many emotions left to pour out...but the timing felt right to share our story...in the hopes that maybe someone's journey could benefit....  and that you get to know a little more about our precious Taylor Louise. x

    

 *We did get the vehicle thanks to some furious fundraising by friends....didn't managed to have it converted in time.

Fraser joined our family safely......a week after his due date..... 5 months short of missing his big sister.

Our Story Pt 4

Part One & Two & Three are here

....2003 ticked over and would prove to be another big year.....the highlight being a fundraising function for the Cure for Life Foundation with Dr Charlie being the main attraction....It was in honor of one of our special friends - Lilly, just a little younger than Taylor who had not survived her aggressive tumor. It was also an exciting opportunity to meet up with Taylor's very favourite Doctor....she was hard to convince that he hadn't just come to see her and sit and chat....

It proved to be more of an important meeting than we anticipated....for a few days before the dinner I discovered a lump on Taylor's head that shouldn't have been there......so Dr Teo graciously did a little consult at the dinner and suggested we head for a MRI asap.

Whamo...it was off and running again...the nature of Taylor's tumor was a "space invader" and while it continued to grow it was placing pressure on the brain .

This time the decision seemed a little easier and  we knew what we had to do,book some tickets and  fly over to Dr Teo once more.....the surgery was going to be tricky ...but he was going to go hard otherwise we would be doing this for her lifetime....we entrusted her once again and waited out the mammoth surgery time....this time we had family fly with us to help out with Meg who was now 3 years old.   

She came through ok...a little more worse for wear on a few of the hormonal problems and we could see that she was a little more battle injured in many small ways but we were keen to get her home to recoup. Dr Teo was confident that he had taken the last of the tumor...after a week we headed home...a rough trip but one we made ..

Over the next two months we were in and out of the children's hospital with little complications related to the balance of medication and the fine line we tread keeping fluid balances. Not much of Year Two was seen at school and she desperately missed her teacher and friends.

It was while in hospital on one of these visits Taylor took a turn that we couldn't explain.... 

We found ourselves in the ICU with a crisis on our hands.....Taylor was put into an induced coma and there she stayed for weeks......we stayed by her side.....not one minute of the day went by that one of us wasn't there....we took turns sitting together or on our own...Derek tried to maintain work, they were so so accommodating.....I had been teaching part time but just had to exit quickly and relinquish my job we were in for the long haul and didn't know how long that would be.Meg moved in with my sister and her family to be cared for.

Slowly after several weeks it was decided to allow Taylor to wake.....which took longer than they thought...it appears her body had shut down ...it became clear that she had no movement  and her speech was also gone. There was much discussion about her future and what we should prepare ourselves for.....we were having none of it.

She was strong ...we could be strong for her...there was no turning back for any of us.....there was the insinuations that this Dr Teo hadn't done the right thing by us....but we stood by all that we had done and knew that God would bring our little girl through.

So from early July through to  late October when we finally brought her back home we prayed, stayed and willed her on. We were brought meals every single night by friends on a roster...often able to share with others we had so much.....we became a part of the furniture....the nursing staff became extended family and we learnt to sleep in recliners quite satisfactorily. The hard work for Taylor was on......physio, speech,learning to move, eat and talk......we learned along side of her for we knew our goal was to get home.

By late October we had a long way to go but were desperate to head home.....so now wheelchair dependent we had the house modified to accommodate her...enrolled the silver chain to help each day, enlisted the help of a physio friend that would come every second day...we could do this...and we did slowly.....

She fought us all the way...being stripped of her independence was hard ...she was very mature  and strong willed...yet now had to rely on so many others as did we, having to learn to lean.

Transport was an issue which kept us at home for the rest of that year until we could figure out a way to purchase a vehicle...we just weren't sure how permanent the chair need would be...we had hoped not long.........   

   

 

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.... 

        

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...