Raj’s Story

“Before I tell you all the bad stuff, I want to tell you about the great stuff about my son Raj. Raj loved dinosaurs. I must have watched Jurassic Park about 25 times with Raj! He loved Marvel and his favourite character was Winter Soldier. Our favourite moments were times spent with family. These are memories I will cherish forever.

At two years old, Raj suddenly collapsed at home, losing the use of the left side of his body. A trip into A&E showed he had a bleed in his brain. That first night we were transferred to John Radcliffe Hospital, and Raj underwent his first operation of 6.

After many hours of unrest and no sleep, we were told the horrible news they had found a tumour.

Pathology confirmed it was a high-grade glioma. The surgeon told us it was aggressive and Raj would likely die within months regardless of the intervention we made. We were told we could operate, but this was likely to lead to left-sided disability, and he was still likely to die from the tumour within six months. We were given the option of doing nothing and him staying mobile and well, but we would lose him within three months. We chose hope.

Raj had his 2nd surgery. Amazingly, he recovered quickly with no disabilities. We went onto a chemo regime, which involved a cocktail of drugs given over six months. Raj got through it pretty unscathed.

We got past 6mths,12mths,18mths. Raj surprised all of us. Life felt so normal. Then, we had our first relapse. Relapses were so hard to accept. Like a punch in the stomach. The next few years comprised of another four surgeries, a trip to Oklahoma for proton beam therapy, more chemotherapy and a trial of Immunotherapy. We tried it all.

In April 2018, Raj died in my arms at home. I got eight years with Raj. It will never be enough, but I was told I would lose him at age 2. We made those six years count. I miss my boy. Grief is an ugly road, but I will continue to fight for Raj and all those who face this horrible diagnosis ❤️”