Raj was two and a half years old when he was diagnosed with a brain tumour. His treatment so far has involved three operations, chemotherapy and proton beam therapy.
His mum, Suki, tells their story:
"Anybody who meets Raj would never know he had a brain tumour. He is just like any other five-year-old. He is full of energy and loves playing with his action figures.
At the moment, one thing does however give away the fact he has had a tough time. The scar from his surgery is very visible - he has lost his hair in a small section where he received proton beam therapy in November 2014.
Raj rushed to A&E
Our Journey began in June 2012 and it was normal day like any other. But something happened that changed our lives forever.
Raj, two and a half years old at the time, was watching TV and suddenly fell to one side. Something felt really wrong. The left side of his body felt floppy and limp.
We rushed him into our local A&E and they took Raj in for a CT scan. At that moment, after the scan, when they ask you to come into a side room, you realise it’s not going to be good news.
CT scan results and immediate operation
...they had found a bleed in his brain and they suspected it was caused by an underlying tumour. He was operated on a few hours later.We were told they had found a bleed in his brain and they suspected it was caused by an underlying tumour. Raj was rushed to John Radcliffe Hospital in Oxford. He was operated on a few hours later.
The surgeons took as much of the tumour out as they safely could. We were then given the devastating news: the tumour was malignant and very aggressive - a grade 3 or possibly even grade 4 tumour.
We had a couple of months at home with Raj while the hospital worked on the pathology of the tumour.
A very poor prognosis
It became clear it was either an ependymoma or glioblastoma, but it was difficult to knuckle it down to one type.
The operation would be aggressive and more than likely leave him paralysed.We were told, following a scan two months later, that the tumour had grown and if Raj wasn’t operated on he would die within three months.
The operation would be aggressive and more than likely leave him paralysed. If the tumour was a grade 4 he could die soon thereafter anyway, as well as being paralysed for the time he had left.
Six hours of aggressive surgery
We felt broken but we made the decision to operate. Surgery took over six long hours. Raj’s surgeon was amazing and managed to remove the entire tumour.
We waited to see if Raj would move all his arms and legs. Amazingly he did and there was no paralysis at all, apart from a small weakness in his left hand!
Four cycles of chemo
Soon thereafter we commenced with chemotherapy. It was a pretty tough course: four cycles and five different types of drugs. All were administered as an inpatient at John Radcliffe.
Typically we would have chemotherapy every other week, and be in hospital four days for every course.
We spent a lot of time at the hospital and they did a great job of making Raj comfortable. We also made some great friends.
Raj tolerated chemotherapy amazingly well. The biggest side-effect was loss of hair. Because we had chemotherapy so often, Raj’s immune system never ever really got a chance to recover so he spent most of six months at risk of infections. Amazingly, he managed to escape without any!
Scan reveals another lump
Following treatment, life returned to normal. Raj started nursery and we felt almost as if it all could have all been a horrible nightmare.
We were reminded it was definitely reality when one of Raj’s regular scans showed a small lump again. The surgeon got us into the hospital fairly quickly and said they would like to remove the entire tumour again, as well as some healthy tissue around it.
Raj had his third operation, and again the surgeon removed it all.
The surgery would again need to be aggressive and therefore the risk of disability returned.
Raj had his third operation, and again the surgeon removed it all. Raj’s hand got a bit weaker, but otherwise he was fine. We thought he would be crying following surgery, but he returned to the ward and decided to sit up and play with his Transformers! He truly is resilient.
Proton beam therapy in the USA
The next step was radiotherapy. We knew the side-effects could mean a whole host of new problems for Raj.
Raj’s oncologist discussed proton beam therapy with us. We decided this was the best route as it meant less side-effects. An application was made to the NHS panel from the hospital and it was approved!
We spent nearly three months in Oklahoma in the USA from September 2014. Raj received 33 sessions of radiotherapy at the ProCure Proton Therapy Center. The doctors, nurses and people of Oklahoma were wonderful, and Raj loved getting to know them.
Read more: Proton beam therapy
So far so good…
Again life has returned to normal. Raj is now at school and we have regular scans every 4 months. His latest scan showed no tumour.
As parents we always hope and pray that this is the end of it - but also live with the fear it may not be.
For now, we are loving every day with Raj and enjoying all the wonderful things life has to offer."
Suki, January 2015
Read more: Brain and spinal tumours | Commonly used terms in treatment | side effects of treatment
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