Children With Cancer Fund (Polegate) The Bon Bon, 5 Western Avenue Polegate, East Sussex, BN26 6EP Tel: 01323 485314 Email: info@childrenwithcancerfund.co.uk Registered Charity No.1110644

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 asked them to think of things they really wanted or would wish for. When you read 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.

Dear Chris & Ursula

Finally we are sending you a wish list, I apologise that it has taken so long but we have been hoping to have moved house by now but lost our buyer just before Christmas so it has been very difficult to choose things as we are unaware of where and when we will be 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 flinching!

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 hospital room with doctors and nurses and to be told your 14 month old son has a kidney tumour was the worst thing we have ever experienced and in that moment our world fell apart.

Once we had pulled ourselves together it was time to find out what treatment was needed. We found ourselves at the Royal Marsden the following day being told about the plans for treatment and what would happen next. The next day we where at St Georges in London having a biopsy and a portacath fitted so Oliver’s chemotherapy could be given more easily. One week later the results were back and confirmed a Wilms tumour and treatment needed to start. The initial plan was to have 6 weeks of chemo to reduce the size of the tumour and then 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 Marsden to say the tumour had not reduced in size enough for surgery and that we would have to have a further 6 weeks of chemo. Again a scan was done to see if the tumour had reduced in size. It had not reduced in size as much as we all hoped but it was felt that surgery should go ahead. This was 3 months after the first diagnosis. Surgery was done at St Georges. To give your child over to strangers for surgery and to be totally out of your control was very hard. Those 5 hours seemed to go on forever. The constant looking at the phone incase you have missed a call. The call then came to say that surgery had gone well and that he was waiting in paediatric intensive care for us.

It was heart breaking to see your child laying there with tubes coming from everywhere and with a large wound on his tummy. He looked so ill. Oliver was in intensive care for 4 days due to the inability to control his pain levels. I (mum) felt that I needed to stay with him in intensive care so this left my husband in parents accommodation on the other side of the hospital ground, as we where not able to both sleep on the unit. To see your child in pain and not be able to comfort them properly was hard and it was great when some of the tubes were removed and we could have proper cuddles again. Oliver was then transferred back to the children’s surgical ward, where we spent a further 3 days.

The child we brought home looked so ill and had lost so much weight, it was difficult to recognise the bright active Ollie that we knew.

It was then time to start the six months post op chemo. We had forgotten what it was like with chemo and were quickly reminded when Ollie started being sick again and refusing to eat. During this time Oliver’s scans and X-rays continued, as previous scans had shown that there were some bad cells in his remaining kidney. It was felt that Oliver was also going to lose this kidney and would have to have a transplant. So we started to meet the Guys hospital team that would take care of this once Olivers chemo had stopped. Further genetic tests were taken and when the results came back it was felt that Oliver would not need a transplant at this time, and that they would let nature take its course and see how long Oliver could go with the one kidney.

During this six months post op chemo Oliver has had a few problems and has needed to go into hospital for several lots of IV anti-biotics, a blood transfusion and fluids which has meant more time staying in hospital. Oliver also suffers from high blood pressure as a result of reduced kidney function, and this has taken a long time to be under control and involves Oliver taking tablets twice a day.

The six months of post op chemo has now been extended by a further three months to ensure that these bad cells in Olivers remaining kidney do not develop into another tumour. We await his final MRI scan to determine the health of this kidney.

Tracey (Oliver's mum)

When I spoke to the family, during the general chat, clothes and going out for meals were mentioned as things of the past, so, we also bought some clothes vouchers for Mum & Dad and a voucher for them to go out for a nice meal together as well as the three items they wished for.

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