Below is a
copy of the E-mail that we received
from the family after one of the nurses had told us about them. We had
them to think of things they really wanted or would wish for. When you
the list you will see why I say that I take my hat off to these
families. They are going through something that hopefully you or I
shall never know
and yet all they want out of life are the simple things.
Finally we are sending you a wish list,
I apologise that it has taken so long but we have been hoping to have
house by now but lost our buyer just before Christmas so it has been
difficult to choose things as we are unaware of where and when we will
able to move.
I hope these ideas are ok,
1. An Easel,
2. A Stroller pushchair, or
3. Membership for Drusillas
I hope you all had a good Christmas
and new year and thank you for your patience.
Love Tracey, Gary and Oliver (Ollie)
Spot the difference! Oliver's
mum Tracey was
so tired that Oliver's dad Gary could carry out this move without her
Below is a letter from Tracey.
Oliver’s tumour was
found when he was having
minor surgery for another medical condition. To be taken into a
room with doctors and nurses and to be told your 14 month old son has a
tumour was the worst thing we have ever experienced and in that moment
world fell apart.
Once we had pulled ourselves together it was time to find out what
needed. We found ourselves at the Royal Marsden the following day being
about the plans for treatment and what would happen next. The next day
where at St Georges in London having a biopsy and a portacath fitted so
chemotherapy could be given more easily. One week later the results
back and confirmed a Wilms tumour and treatment needed to start. The
plan was to have 6 weeks of chemo to reduce the size of the tumour and
surgery to remove both the tumour as well as Oliver’s kidney.
A few days before the planned surgery date we received a call from the
to say the tumour had not reduced in size enough for surgery and that
would have to have a further 6 weeks of chemo. Again a scan was done to
if the tumour had reduced in size. It had not reduced in size as much
we all hoped but it was felt that surgery should go ahead. This was 3
after the first diagnosis. Surgery was done at St Georges. To give your
over to strangers for surgery and to be totally out of your control was
hard. Those 5 hours seemed to go on forever. The constant looking at
phone incase you have missed a call. The call then came to say that
had gone well and that he was waiting in paediatric intensive care for
It was heart breaking to see your child laying there with tubes coming
everywhere and with a large wound on his tummy. He looked so ill.
was in intensive care for 4 days due to the inability to control his
levels. I (mum) felt that I needed to stay with him in intensive care
this left my husband in parents accommodation on the other side of the
ground, as we where not able to both sleep on the unit. To see your
in pain and not be able to comfort them properly was hard and it was
when some of the tubes were removed and we could have proper cuddles
Oliver was then transferred back to the children’s surgical ward, where
spent a further 3 days.
The child we brought home looked so ill and had lost so much weight, it
to recognise the bright active Ollie that we knew.
It was then time to start the six months post op chemo. We had
it was like with chemo and were quickly reminded when Ollie started
sick again and refusing to eat. During this time Oliver’s scans and
continued, as previous scans had shown that there were some bad cells
his remaining kidney. It was felt that Oliver was also going to lose
kidney and would have to have a transplant. So we started to meet the
hospital team that would take care of this once Olivers chemo had
Further genetic tests were taken and when the results came back it was
that Oliver would not need a transplant at this time, and that they
let nature take its course and see how long Oliver could go with the
During this six months post op chemo Oliver has had a few problems and
to go into hospital for several lots of IV anti-biotics, a blood
and fluids which has meant more time staying in hospital. Oliver also
from high blood pressure as a result of reduced kidney function, and
has taken a long time to be under control and involves Oliver taking
twice a day.
The six months of post op chemo has now been extended by a further
to ensure that these bad cells in Olivers remaining kidney do not
into another tumour. We await his final MRI scan to determine the
of this kidney.
Tracey (Oliver's mum)
I spoke to the family, during the general chat, clothes and going out
meals were mentioned as things of the past, so, we also bought some
vouchers for Mum & Dad and a voucher for them to go out for a
together as well as the three items they wished for.