Xavi was diagnosed with retinoblastoma two days after he celebrated turning two years old. Now, as his third birthday approaches, his mum Rhiannon Malbas shares their family’s journey over the last year…

Two days after his second birthday our lives were turned upside down. Our crazy, funny, happy and seemingly perfectly healthy toddler Xavi was diagnosed with retinoblastoma. We thought that the biggest thing that 2017 had in store for us was a new baby (I was 32 weeks pregnant), but sadly we were wrong.

A few weeks prior to his diagnosis Xavi’s left eye had started to “turn in”. It was extremely subtle and for a couple of weeks we brushed it off, thinking we were imagining it. Then his nursery worker mentioned it and that prompted me to immediately book a GP appointment.

The GP explained that squints can be common in young children and referred him to see an ophthalmologist. After waiting a few weeks for an appointment I contacted the eye department to be told there was a four month waiting list. I had read that a sudden squint can be cause for concern and retinoblastoma was in the back of my mind as something I wanted to rule out.

Sudden squint

Xavi’s squint was definitely sudden; in fact it came on overnight. I chased and chased and we were eventually offered a cancellation. It transpired that chasing for this appointment might have made the difference between Xavi’s eye being saved and losing it.

It was during this appointment with the ophthalmologist that the tumour was spotted, along with the fact that Xavi’s retina had detached, and we were immediately referred to the retinoblastoma team up at Birmingham Children’s Hospital.

We waited five days for the diagnosis appointment at BCH, those five days were an extremely difficult and distressing time. We were expecting a cancer diagnosis and we knew retinoblastoma has a 99% survival rate in the UK. But this doesn’t stop your mind working overtime. The whole thing was a rollercoaster, and to be honest it still is.

When the appointment finally came round the consultant explained that Xavi had a Grade D unilateral tumour in his left eye with extensive vitreous seeding. A few years ago an eye like Xavi’s would have been removed without question, however with recent advances and research the aim is now to try and save them, even though sight may have been lost. The plan was for Xavi to undergo six rounds of systemic chemotherapy with ongoing laser treatment and intravitreal chemo injections directly into his eye.

We went home completely numb. Xavi was as happy as ever, it really was so hard to accept he had cancer. But we slept better that night knowing we finally had a diagnosis and a plan in place.

Starting treatment

We were back at BCH three days later for Xavi to have a Hickman line fitted ready for chemotherapy to commence a couple of days after that. Xavi was lucky in that the chemotherapy didn’t have a huge impact on him. He went off a few types of food and was restless at night after the first two sessions, but that didn’t last. He didn’t seem to get tired or feel sick (despite refusing to take the anti-sickness drugs!) he did lose his beautiful hair and he was usually neutropenic for a week every month, this resulted in several hospital admissions due to infections.

Whilst this was all going on our daughter Rosa was born. Her appearance made the hospital admissions slightly trickier, my husband was still working full time and it isn’t really possible for one person to manage a newborn and a sick toddler in a hospital room! Thankfully we have a very supportive family who were able to step in and help out.

After four sessions of systemic chemo we were told that the tumour had shrunk so much we were given the option of stopping and carrying on with laser treatment and chemo injections to tackle the seeds. This was a huge relief, because although he didn’t suffer terribly with side effects, systemic chemo has a huge impact on your day to day lives. We were so happy to leave the constant worry that he would be hospitalised every time he got a temperature behind us.

Xavi went on to have five rounds of intravitreal chemo injections. These were carried out during his monthly EUAs (examination under aesthetic) and thankfully again he didn’t suffer any side effects, apart from the annoyance of having eye drops administered every two hours.

Moving on

A year later and Xavi’s tumour is now considered ‘stable’ and last month he had his first EUA where the decision was made not to carry out laser. This is another step in the right direction because it means that they will hopefully start to space out his EUAs which are currently every four weeks. Xavi is back at preschool now and we hardly ever focus on retinoblastoma between his appointments. We can finally make plans, see friends again and even treat ourselves to a holiday! We’ve come so far in a year, and we’re incredibly proud of our brave boy.

If you or a loved one has been affected by retinoblastoma, our support workers are here to help. Please visit our support page to find out more and get in touch.

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