The first time Vikki knew something was wrong with her daughter Penelope was in October 2019. Penelope’s eyes were glazed over. Just days later, Vikki noticed the same expression, but this time, Penelope was dribbling and her speech had dramatically slowed. Sadly, following agonising trips to the hospital and tortuous waiting, an MRI scan revealed a tumour on the left side of Penelope’s brain which later was found to be cancerous. Now, two years on and following a harrowing but remarkable journey, Vikki, 43, tells Penelope’s story.
“Looking at my daughter’s glazed expression that day I was panicked.
Penelope was just two-years-old, yet the signs were all there for a stroke. Slow speech, one side of her face was relaxed and she was dribbling.
It was the second time in a matter of days it had happened. But when my husband Steve, now 46, and I got to Lister Hospital in Stevenage, the symptoms had disappeared.
Staff thought the most likely reason for her symptoms was epilepsy, but without seeing her in the state, they just weren’t sure.
Next time film her,’ they told us. So that’s exactly what I did. Just one day later, it happened again, but this time one side of her entire body was limp.
I don’t know how I managed to do it, but I whipped out my phone and recorded her. I knew the doctors needed this to help diagnose what was wrong.
After capturing a few seconds, I screamed at my son Sully, now nine, to get in the car. I was scared and knew I needed to get help quickly.
She was still having what was later diagnosed as a seizure when we arrived at Lister hospital and they instantly admitted her. However, we had to wait two days until she could have an MRI scan as we had to wait for the anaesthetist. I knew something was really wrong and it was an excruciating wait.
After the MRI they explained that Penelope had a tumour on the left side of her brain and it was the size of a ping pong ball. We didn’t know if it was cancer, but just hearing about the size of the tumour compared to her little head knocked me for six. You’d rather it was you in her shoes ten times over.
The doctors told me they needed to get the images to a neurosurgeon to formulate a plan and find a diagnosis. Thankfully Great Ormond Street Hospital (GOSH) looked at the scans and decided to step in – we’d heard such good things about the hospital as one of my friends worked there. GOSH’s plan was to remove the mass, but first we had to wait for a surgery slot.
We were sent home from Lister Hospital with drugs to manage Penelope’s seizures and all we could do was sit and wait. It was awful. She was having 10-20 seizures a day. I spent more nights in the hospital than at home, but an amazing doctor there managed to find the right medication to make the seizures less frequent.
Eventually on 18th December, we received the call asking us to bring Penelope into London to GOSH for surgery.
Steve and I paced the streets of London from around 9.30am when she went in, until about 5pm when they called us. When we finally saw our little girl, her poor little head was wrapped up and she had a drain in the side of it. But the good news was that they were confident they’d removed all of the mass and had taken samples for testing. That night I stayed with Penelope, but Steve had to head back home. Our son Sully needed one of us to be there for him too.
A few days later, on 23rd December, the results came back. The tumour was cancerous and grade four. The neurosurgeon said it was really rare* – only a handful of children had it.
Although it had been removed, they still needed to give Penelope treatment to reduce the chance of spread and the cancer returning. It was so aggressive, it had likely grown to the size of that ping pong ball in just five months. I felt terrified. We thought that was the end of it, so it was hard to hear.
But children are so resilient. Whilst Steve and I were in bits, Penelope seemed mostly unfazed. She was trying to sit up in bed and she kept telling me she wanted to play. Her strength was unbelievable.
Once Penelope had recovered, staff at GOSH told us to go home and enjoy Christmas together and they’d start treatment afterwards. We told them we just didn’t care about Christmas, but they insisted we went home. ‘A week won’t make any difference’, they’d told us.
That Christmas was horrendous. We weren’t in the right headspace and I couldn’t face cooking so we bought a fancy ready meal version of a Christmas dinner you could heat up. We slapped on smiles for Sully who was just eight-years-old. We tried to make Christmas a nice day for him. He’d suffered through this too. And whilst Penelope never asked about her head, Sully was more inquisitive, he could sense something was wrong.
A few days after Christmas I told him that Penelope had a tumour in her head and that I was frightened. I also read from a book provided to me by CLIC Sargent to help him understand. He asked me ‘is she going to get better mum?’. I didn’t know what to say, so I just told him she was going to hospital to get medicine to try and make her better.
Those days passed in a haze waiting for the call from GOSH. Finally in the new year we went back in. Penelope had a Hickman line put in for treatment and a few days later the chemotherapy began. Even after just one round, her hair started to fall out. It was awful to watch. I’d always watched the cancer charity ads with unwell children with no hair and it made me feel sad, but you never thought one day your child will be that child.
After that first round, her immune system was at rock bottom and she caught pneumonia. She had a terrible cough, a temperature that wouldn’t come down and needed oxygen. Back at home she couldn’t even get out of bed. I was so scared I put a bed down on the floor next to hers to keep an eye on her.
Once she’d recovered enough, Penelope went on to have five more cycles, one every other week. She was sick, but usually just for the first 48 hours after. During rounds, she was in the hospital corridors attached to her drip playing with the other children who were in the same boat as her. It was quite surreal seeing all these little kids with no hair playing together.
She was unbelievably strong throughout, but there was one thing that she hated: the needles. She called it ‘the stingie’ and when nurses came in at 10am to give her an injection she’d hide. It was difficult to watch.
By this point, months had passed and it was March 2020 – that’s when coronavirus hit. We were told siblings of vulnerable children had to be taken out of school, so we picked Sully up from school to take him home, but schools actually closed later that week anyway. Then the shielding began. I was so frightened Penelope would catch it. We knew she’d struggle to fight that on top of cancer.
Penelope still had two rounds of chemotherapy to go and that’s when we were told she’d need radiotherapy too. It meant we needed to be in London full time.
Luckily, a friend had a house in Marylebone high street which was empty. I felt safe there, away from people, especially as London had become eerily quiet. We were thankful for the house, but it was a sad time. It meant Penelope and I were in London whilst Sully and Steve were back home. The boys would come to visit us on a Wednesday night where we’d treat ourselves to a takeaway and would head home on Friday, so we at least got to see each other regularly.
When chemo ended and Penelope was just having the radiotherapy, she started eating more again and looked so much better in herself, but activities were limited. She still had her Hickman line in which couldn’t get wet or it would get infected. It was a boiling hot summer and poor Penelope couldn’t play in the paddling pool and we had to keep a close eye on her.
Just as she was looking a lot better, GOSH told us they wanted Penelope to have three more rounds of chemotherapy. Her scans looked good but they preferred to give nine cycles as a precaution. That was tough news as it would make her unwell all over again, but we knew it was for the best.
One morning when we were about to leave for GOSH she grabbed hold of the bannister and said ‘I don’t want to go mummy’. There were lots of tears in the car on the way there, it was heartbreaking.
When we arrived at GOSH though, they always knew how to cheer her up, they got to know what she liked. But it wasn’t so easy that second time around because of coronavirus. The entertainers doing magic tricks stopped coming. The playrooms closed. No friends could visit. It made it twice as hard.
Finally, on 15th July, Penelope was finally given the all-clear to go home. As she rang the bell (that means a child is cancer-free), I was in bits. I was doubly emotional as I knew Steve would be gutted he couldn’t be there to see her ring it. Only one carer could come at a time because of coronavirus. I was the one who’d taken leave from my job whilst he carried on working to bring money home and it meant he couldn’t be with Penelope as much as he wanted to be. It was really tough on him, but we were both elated her scans were clear.
That summer, coronavirus restrictions loosened slightly. We even managed to get to Norfolk for a holiday by the sea. Unfortunately Penelope still had her Hickman line in, so she couldn’t go in the water. I knew I had to take her back to the seaside once it was out.
Shielding ended in early August and it meant Penelope could finally see some friends again in the garden. It was so nice to see both children carefree and socialising, although I was still very nervous.
Now, I’m just glad things are getting back to more of a normal way of life, we’re even managed to wean her off her seizure medication. She has scans still every three months and so far they’ve been clear, thankfully. However, I’m worried about the impacts of radiotherapy on a still developing brain – it could’ve affected hormones and possibly her fertility, but we won’t know until she’s older.
For now, we’re focussing on the present. Although we couldn’t see family last Christmas, we had a great time at home with just the four of us. This year, we weren’t panicked and Penelope was actually old enough to understand it more – it was magical.
Whilst Penelope is doing okay, the knock on effects have been huge for Steve. His mental health has really suffered. He had to stay so strong for us all when Penelope was having treatment. He looked after Sully, kept going to his full time job to enable us to be able to eat and pay our mortgage. He taxied us back and forth to GOSH and he had to tackle the phone calls to family members who wanted to be regularly updated. He took on the role of caring for all us
However, he never got to just be with Penelope and hold her hand and speak to doctors. He never got to see the kind things people did for her, like the time a friend filled her hospital room with bubbles, or her laughing at the clowns. He had to hear it all through me on the phone afterwards. That was tough on him. His memories now are negative ones of her temperature rising at home, her having seizures and it’s gripped him. It’s left him with severe anxiety and taking weeks off work to cope. He’s petrified the tumour will come back due to how fast the tumour grew in the first place. Our roles have swapped. Now I have to be the positive strong one, whilst he tries to cope. Thankfully though, GOSH is providing him with therapy, to help him try and work through everything that’s gone on this past year.