My baby was born with eye cancer

Rachel Pennick, 40, a nursery nurse from Martlesham Heath near Ipswich, lives with her husband Tim, 45, who works in IT, and their son George, three. George was diagnosed with eye cancer just a few days after he was born.

‘When I fell pregnant with George at the age of 36 I was absolutely astounded. I’d only been married to my husband, Tim, for nine months. Plus, I thought I couldn’t have children because I had endometriosis, a gynaecological condition that can damage your fertility. I’d gone to see my GP because I was concerned that my period hadn’t arrived. He did a pregnancy test and, when it was positive, I was ecstatic.

‘My pregnancy was normal and we decided not to have any screening tests. Tim was diagnosed with cancer in both eyes shortly after he was born and so was his mother, Jane. Both are blind as a result. We knew that our baby had a 50-per-cent chance of having the same cancer, known as retinoblastoma, and decided to just wait and see.

George was born by emergency caesarean weighing 9lb 2oz. We’d always
thought we were having a boy and we’d named him George right from start.
We didn’t even have a girl’s name! I was exhausted but delighted. Unfortunately,
George had a group B strep infection, which can be life-threatening for
young babies. He was treated with antibiotics and had to spend the first
11 days of his life in hospital.

‘Two days after George left hospital we travelled to St Bartholomew’s
Hospital in London so that his eyes could be examined. Because it would
have been impossible to keep him still while the inside of his eye was
examined, he had to have a general anaesthetic.

‘It wasn’t good news. George had a large tumour on the membrane (retina)
at the back of his right eye and several small ones on the retina of his
left eye. He would need to start chemotherapy almost immediately. Tim
and I had prepared ourselves for this, but it was still a dreadful time.

‘When George was just three weeks old he had a Hickman line fitted (a
tube for administering drugs that leads straight into the heart) and had
his first session of chemotherapy. I stayed with him in hospital and he
coped amazingly well.

‘Because I’d never had a baby before, it all just felt like part of being
a mum. It also helped that George was such a big, healthy baby and being
able to breastfeed him while he had his treatment was very comforting
for us both.

‘From then on we were in and out of hospital all the time. George had
some of his chemotherapy in London and some in Ipswich. Tim often joined
us while his parents looked after his guide dog. In between hospital visits,
CLIC Sargent nurses, who specialise in caring for children with cancer,
would visit us at home to clean out his Hickman line and check that everything
was OK.

‘After his second session of chemotherapy he had a have a couple of blood
transfusions because his white blood cell count had dropped so low. Apart
from that he didn’t really have any side effects — his doctors said that
children’s bodies often cope better with chemotherapy than adults’.

‘We never managed to get to any baby groups because of all the disruption
and we couldn’t give George baths or take him swimming because of the
Hickman line. We also had to keep him away from other children because
the chemotherapy lowered his immune system, so we felt quite isolated
at times.

‘Unfortunately, when George was nine months old, the doctors told us
that the chemotherapy hadn’t worked as well as they had hoped. He still
had tumours in his left eye and was in danger of losing the sight in that
eye. They said they wanted to put a small radioactive patch – rather like
a contact lens – over his eye for a couple of days to reduce the tumours,
and then start radiotherapy.

‘Because the patch was radioactive, George had to stay in isolation for
a couple of days, which was hard for all of us. Soon after, George started
six weeks of radiotherapy in London. The treatments were daily but only
took a few minutes. Rather than stay in the hospital, I decided to travel
down with George on the train each day.

‘Tim wasn’t allowed to come with us. He had radiotherapy himself as a
baby, and exposure to any more would have increased his chances of getting
secondary cancers. It was very tough, but thankfully the radiotherapy
worked really well. At 13 months, George was able to have his Hickman
line removed and stop treatment completely.

‘Since then, George has had his eyes examined every three months and,
so far, the tumours have stayed inactive, or “inert” as the doctors put
it. From now on he’ll have examinations every six months until he’s five
when, hopefully, he’ll be given the all-clear.

‘Last year, George had his eyes tested and the optician said that he
has very good sight in his right eye, but only a little peripheral vision
in his left. As far a George is concerned, though, his eyesight is perfectly
normal. He rides his bike and runs around with no problems at all. In
fact, last time we told him that we were taking him to have his eyes examined
he said, “But there’s nothing wrong with my eyes!”. We just explained
that, when he was a baby, his eyes didn’t work very well and that they
still need to be checked.

‘The examinations get harder as George gets older. The eye drops the
doctors use to dilate his pupils sting, so he kicks and struggles and
screws his eyes tight shut so that they can’t get them in. He still has
to have a general anaesthetic. Tim and I find the examinations quite difficult,
too, because we’re never quite sure what the doctors will find.

‘In between examinations, we just try to live as normal a life as possible.
Like all three-year-olds George can be both delightful and difficult at
times. He certainly knows his own mind and can be quite a challenge! If
his eyesight stays as it is now, then he should be able to see without
any special lenses and go to an ordinary school. Fingers crossed, he’ll
be fine.’

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