Patient Story – Harry HP

Harry was diagnosed with ependymoma of the posterior fossa – grade II, a type of a brain tumour in August 2018 when he was five years old. His mum Tara shares their story.

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Harry 5 days after surgery before his Shunt operation.

Harry started to feel dizzy and began vomiting

I remember Harry bouncing on the trampoline in the snow in June 2018 as we live in the Falkland Islands. He got off the trampoline and complained that he felt really dizzy. That’s my first memory of something maybe being wrong. He carried on with school as normal, but then he began to get sick, vomiting in the mornings when he woke up, randomly through the school day and feeling nauseous. This progressed over the next few weeks and months into headaches, dizziness and blurred vision. At five years old this meant he would say he could see two of me.

 

Harry on the trampoline that day he felt dizzy

The news no parent should hear

Due to the small population, there are no facilities available for further investigations so we were flown by Air Ambulance to Chile, South America on the 31 July 2018, where an MRI confirmed an ependymoma of the cerebellum (a type of brain tumour). I remember the moment like it was yesterday. I cried and prayed it wasn’t true, but after 10 minutes I remember saying out loud “that’s enough now”. I just thought that Harry would have no idea what was happening and he didn’t need a mum that was falling apart. I remember making calls to family and the sadness I felt, feeling so upset that this fear and worry I would now have to pass on to people who we cared so much for, whose day was just passing by as normal. That stayed with me.

 

Harry Coloring on the plane over to South America

I lied, but for a good reason for surgery

A drain was placed in Harry’s head to ease the pressure. After a week he underwent surgery to remove the tumour where the surgeon was happy that he had taken 100% of the tumour and we were informed it was a grade 2. I remember vividly, kissing Harry through his tears telling him that I ‘wouldn’t let them do it if it was going to be bad’. But that was a lie, I didn’t know if he would come out of surgery, or who he would be if he did. I still get upset thinking about the fact I lied to him, but you have to, I couldn’t let him worry. I cried for the four and a half hours that he was in surgery, I remember watching the window as it gradually got dark. He woke up straight after surgery asking for a hot dog and the relief was indescribable.

Harry was fitted with a programmable shunt five days after his initial surgery as scans showed there was pressure building up again. Harry was incredibly weak after months of illness, he had to have physiotherapy to help build strength for walking and also for his fine motor skills. We were flown to the United Kingdom, one month after surgery to look into our options for radiotherapy.

Harry Aged 5 Years 3 days after surgery and my first hug in 2 weeks

Proton beam treatment in Florida

We were offered proton beam therapy in Jacksonville, Florida, which went well. Harry completed 33 rounds of treatment awake, at the age of five that’s pretty incredible. On 18 November, Harry rang the end of treatment bell in the Proton Centre. We were allowed to go home to the Falkland Islands for two weeks for Christmas in 2018, and returned to the UK in January 2019 for clear scans. My mum, Harry’s nanna, was there with us every day. She travelled with us to Chile and stayed with us in the UK and America. Other family members travelled to Chile to be there for surgery day. The diagnosis hit our whole family so hard but we have all stuck together and become a lot closer.

 

Harry in Jacksonville during Proton Treatment. He managed 33 rounds of Proton awake.

Our Falkland Island community supported us

We have to travel to the UK for MRI check-up scans. There is no facility in the Falkland Islands for those, so for the last three years we’ve been travelling the 8000 miles on an 18 hour flight from the Falkland Islands to the UK to have checks and scans every three to six months. The community of the Falkland Islands got behind us completely, having various fundraisers and raising thousands of pounds for us so we didn’t have to worry about finances during Harry’s treatment.

Harry is doing really well, his fine motor skills are still not great. Harry is now eight years old, he uses a laptop in school for written work and he can sometimes be forgetful, but we get by. Harry loves to ride his motor bike, play football and build Lego. He is my hero and we’re getting through each day with much more appreciation for life.
Tara, Harry’s mum, February 2022

Harry now aged 8 years riding his Motorbike

How you can help

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