The Beginning

20th August 1999

Robyn is rushed to Booth Hall Hospital with suspected appendicitis.

21st August 1999

An Ultra-sound scan reveals a lump near the right ovary – an operation is performed to remove suspected cyst.

24th August 1999

Robyn is released from hospital.

26th August 1999

The phone call that every parent dreads , the nightmare begins – Robyn has been diagnosed with cancer. We are summonsed to the hospital to speak to a consultant.

31st August 1999

We arrive at our new home for the next 9mths – Pendlebury Children’s Hospital.

1st September 1999

Robyn goes to theatre to have a Hickman line fitted on order that chemotherapy can commence.

3rd September 1999

Sister Elise’s birthday party, Robyn is not allowed to attend as chemotherapy has started.

And so begins the next 9 months of treatment. 3 weeks in to treatment she loses her lovely blond hair.

This is just the beginning of the nightmare, our whole lives have to change.

Garry gives up work to become the main carer, and Karen has to continue working as bills still have to be paid.

All our lives have been affected- Elise does not have a normal life anymore as we cannot take Robyn to Macdonald’s , swimming or even shopping (all things you take for granted).

27th November 1999

Robyn’s 4th Birthday, and she is well enough to have a party!!!!

December 1999

Robyn is very, very poorly with an infection. I don’t think we realised just how close we came to losing her.

Robyn went on Lapland trip –Robyn was so ill that day that she didn’t enjoy it.

Her face is not shown at all on the TV coverage – probably looked too ill.

She gets rushed back in to hospital the next day.

January 2000

The chemo appears to be working, with good results showing on the scans.

February 2000

Operation to remove left adrenal gland is carried out – the tumour has almost disappeared, and the operation is a success.

March 2000

Admitted to the bone marrow unit for a stem cell transplant – home is an isolation unit or the next 6 weeks.

Horrendous time!!! Never ever seen a child so ill, vomiting blood is a daily occurrence. Would not wish this on our worst enemies, never mind our daughter.

May 2000

Given the good news that Robyn is clinically in remission., so why don’t we feel elated? Because we know that we will always live with this!!!

June 2001

Discovered a new lump on Robyn’s face. We take her to our local GP, Dr Parton , who then referred her back to Pendlebury after speaking to the Oncologist Bernadette Brennan.

Monday 18th June 2001

Robyn has a biopsy on the new lump.

The consultant who did operation came out after op and told us it looked cyst like and not like a tumour. We felt elated, and slept well that night.

Tuesday 19th June

In the morning Robyn had an Ultra sound Scan and returned to the ward ,we waited to take her home as we thought everything was fine.

We were then told that Dr Brennan wanted a ”chat” with us before leaving. At approx 1pm Dr Brennan arrived on the ward and had a look at Robyn, she then asked us to follow her to a room off the ward for a talk. At this point Garry knew it was bad news. The walk to the ante room was as Garry put it “ The Longest Walk of my life”, once inside Dr Brennan told us that the legion inside her mouth was a Neuroblastoma reoccurrence & Robyn was now classed as a terminal patient!

We were then told just to take her home. At the time only a course of Chemotherapy was discussed but this would only prolong her life it would not cure her.

She said as it was so close to the holiday that we had booked & as Robyn was at that time “well”, we should go and enjoy it . It could possibly be the last one as a family.

The next day after little sleep Karen was inconsolable. Garry who had been up most of the night, realized he was not willing to accept this diagnosis as final surely there must be something else available. He then decided to try and find that 1% chance of survival he thought Robyn surely must have.

After searching through websites he saw that most of them for Neuroblastoma were in The USA so he decide to investigate further. A holiday had been booked to Florida via a stay with friends in Kansas [ This was originally a treat for us after the first diagnosed cancer had been in remission for 18mths]

Garry rang the friend in Kansas and explained that Robyn was ill again.

Shocked at the news Shar & Mike Morrow in Kansas contacted a Dr Watanabe who offered his services for free on a second opinion.

9th July 2001

We flew out on to the States taking what medical records we had.

11th July 2001

Talked to Dr Watanabe for over 3 hours, he gave us some different options although he himself could not offer any treatment. He advised of specialists in Houston & New York. The medical records that were taken out were not comprehensive enough so he advised contacting Pendlebury for the full set in order that The Houston Cancer Centre would be able to give an informed second opinion.

Garry immediately rang Dr Parton and asked him to request Pendlebury to send out the records ASAP to Kansas whilst Garry arranged a consultation in Houston.

Dr Parton rang Pendlebury and asked Mr Guy M for them to be despatched by overnight courier to Kansas, which he said would be done. Dr Parton rang Garry back within the hour and advised Garry that the records would be despatched.

Monday 16th July 2001

Supposed to fly to Orlando today but still at Mike and Shar’s as records have not arrived.

Had to cancel flight, rebooked for the 19 th.

Thursday 19th July 2001

Flew to Orlando today. No records as yet, but could not change flight so had to travel. Mike to forward records when they arrive.

Tuesday 24th July 2001

Records arrive in Kansas, too late to send on that day . Mike sends them by next day delivery on the 25th July.

Thursday 26th July 2001

Records arrive at The Texas Cancer Centre . Phoned Texas to confirm, told would need 3-4 days to examine them.

Sunday 29th July 2001

Had to fly home without seeing specialist at Houston as flights booked and money running out.

4th August 2001

Garry and Robyn flew back to Houston for a consultation on the following Thursday.

9th August 2001

Garry met Dr Heidi Russell and had an informed meeting with her.

Felt very positive after meeting and much more focused on task ahead. Costs that were mentioned were enormous so on return set about raising funds.

14th August 2001

Arrived home and immediately set about thinking of ways to raise approx $500,000.

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