I’m sat here drinking my morning coffee. Thinking about Raj. Feeling empty. Every morning was busy. Woken up by Raj to the words ‘morning mum’. I still wake up and say ‘morning Raj’ in reply to the words I dont hear. In my head, I still hear him. We never ever had a lie in! Raj was a get up and go type of boy. We woke by 7am everyday! He was so eager always. We would go down, watch cartoons and then time for Raj’s brekkie. Brekkie mostly consisted of Indian tea and toast. I remember Raj used to complain my ‘chaa’ (tea) did not taste as nice as bibi’s (my mums). I used to think why?! I make it as I am meant to. Then one day I added extra sugar. He said….that’s better mum!’ Grandma’s huh, tut tut. Once Raj was sorted it was sorted I used to make my coffee. I would say to Raj guess what, guess what Raj?! Its thats time! It’s coffee time! He would go ‘oh mum shush. I hate your dumb coffee time’. I used to say ‘Raj it gives me super powers though’ and he would reply ‘no it doesn’t mum!’ Yea, he wasn’t a believer. 😊
Anyway….Raj was 2 when he was diagnosed in June 2012. There were no symptoms or anything. He literally collapsed. He was fully conscious but his left side was all floppy. Raj’s dad and I took him into A&E in Slough. They waited to see if he recovered over a little while. They were thinking maybe he had had a febrile convulsion ( fairly common type of seizure in children usually due to an infection). Nothing changed.
This is probably the point I should have known my child was like hulk. A nurse came over to take blood. I remember it clearly. Raj was on my lap. Crying and struggling. Disabled on his left hand side still. I was holding him, the nurse was holding onto him to take the blood. His dad was stabalising him and 1 other nurse was holding him still so the nurse could access his vein in his hand and get the blood. My superhulk child was literally fighting against 4 of us. Still able to move! There was blood dripping on the floor and all over my shoes as we struggled to keep him still. I just remember the nurse saying ‘im so sorry, im so sorry. This doesn’t usually happen.’ We then sent Raj in for a CT scan as the doctors searched for an answer.
You know it’s really bad news when the doctors look for a side room to usher us into. ‘We found a bleed in Raj’s head. It’s not a normal looking bleed. We suspect there is possibly a tumour under the blood’. That was it…the point life just fell apart.
That same night Raj was rushed to John Radcliffe hospital in Oxford around 12am. This hospital became like home away from home. Anyway, that very night we first met Tim Lawrence who was a neuro registrar. Raj’s dad and I were sat in intensive care waiting to talk to a doctor. We saw one walk past and a woman follow him with a camcorder. We looked at each other like…huh?
Tim then came in and said we need to operate tonight. We need to clean up this bleed and see what is underneath. Then the strange part. Tim said ‘ we have the BBC here filming a documentary. Can they film the op?’ Ummmm……no. We had just been thrown into this crazy world and the last thing we wanted was it filmed!
A few hours later, around I believe 5am the docs were back. In walks Tim and another doctor. Cue Jay, senior neuro surgeon . I love this man so much. You will hear more about the legend that Jay is, as this blog continues. They advised, us as suspected they discovered a tumour. There was nothing more left to do at this point. Just after 5am we were given a room. We slept for a few hours while Raj recovered in intensive care.
The next day Raj was up and pretty swollen from the surgery but back to being the crazy 2 year old we loved. The left sided weakness subsided….some level of normal returned. We came home after a few days. The hospital were going to test Raj’s tumour and advise next steps. Believe it or not the next 3 months life was normal as normal could be! We went home and awaited those crucial results……….