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I am a Sikh. I believe in One God. I get told often, keep faith. The truth is I always have. I know many people talk about losing faith. They often say how can God exist because if there was a God, why would a child like Raj die? Why do I believe in God? Throughout this entire journey I have always felt protected. Raj went through a shedload of treatment but it never affected him. I literally felt like there was a shield around us. Throw what you like at us. We were protected. God protected us. On this earth, I almost felt like Raj was my guardian angel. I remember Raj was 3 years old and he saw someone push me once. I remember he kicked this person for hurting me. He was 3! That was the point I thought wow maybe he was sent to protect me.

Im going to write a bit about the day Raj died, so please stop reading if you dont want to know more. I understand some may not want to hear about death. Me? I think it’s important to discuss. To understand what can be improved and also to understand and make sense of it in some way.

3 nights prior to passing: Raj was mostly ok but he started experiencing a bit of a back ache. During the night he struggled to sleep. He said to me, “mum my throat really hurts when I swallow”. Then he started shivering loads. He felt really cold. I remember hugging him so close, rubbing his arms trying to warm him up. I was thinking, he is getting a cold. He is going to end up with a temperature. It was an uncomfortable night for both of us. I ended up giving Raj a little morphine as his back was really aching. In the morning I woke up but Raj managed to get a few hours sleep in. I rang the hopsital and said, I think Raj is getting a cold. Can I just take him to the GP instead of going into the local hospital to check him over. A trip into the hospital would have meant around 3 hours of wating around etc! The GP was great. Dr Sadrah, said come in the next 20 mins I will see you asap. We went into the surgery. Dr Sadrah checked Raj over. He said throat all clear, ears clear etc. He probably is starting to get a viral bug. Raj told him his back ached. Dr Sadrah, said continue with morphine for pain. He joked with Raj. “Raj, im old I get aches and pains too!” When we left the surgery Raj laughed and said “mum he was a funny doctor”.

2 nights prior to passing: The night was really really uncomfortable. I was massaging Raj’s back. He was hurting. We used to sleep together on a double sofa bed downstairs by the end. During the night we moved from bed to sofa, sofa to bed. I was absolutely shattered. I topped Raj’s morphine up. That made him sleep. I however I was sat up at 3am in my kitchen crying my eyes out that night. I was absolutely shattered. I was sad Raj was going through this. This was the one and only time. I told him (even though he was asleep). “It’s ok to let go Raj” 💔

In the morning I phoned Raj’s nurse. I said Raj is in pain. I think he has pulled a muscle in his back. After speaking to Raj’s consultant, they asked me to go into the hospital so they could check him over. I rang Raj’s dad and said Im going hospital with Raj if you want to come. He met us at the hospital and at 3pm the day before Raj passed, Raj saw his local team for the last time. The doctor checked him over. Raj was extremely sleepy from the morphine. The doc agreed Raj, had pulled a muscle in his back. She said keep the morphine regular. Other than that, we went home. Raj said his pain had gone from a 10 (high) to a 5. The morphine was working.

That evening I had been invited to an event for The Brain Tumour Charity. It was an awards dinner to thank fundraisers and researchers. I wasnt sure If I should go. Raj wasnt too well, but after he said his pain was subsiding and the doctor saying it was just a pulled muscle I felt comfortable going. I actually thought maybe I will hear of something new that may help Raj. I knew there was going to be researchers and doctors there. I was always looking for a solution. I never stopped looking for Raj. Only weeks before I had contacted Duke Childrens Hospital in the US. They told me sorry, there is no cure for a high grade glioma. I also contacted a centre in Turkey. They used thermo-chemo options. I knew there had been some success with their techniques. They told me sorry, we only treat adults. I never stopped trying. I also needed a few hours solid sleep. I couldnt do 3 nights without sleep.

That night I went to the ceremony in London and Raj’s dad took him to his and grandma’s house. Around 8.30pm Raj’s dad rang me. He said “Raj said he is in pain. It’s too much. When I say that to mum she knows what to do. Ask mum. ” I asked his dad what meds he had had and told him what to top him up with. Now I was sat there worrying. I text his dad 40 mins later. I heard back a short while later. He said he is going sleep now. Still a little worried, I text his grandma (he slept with his grandma when at dads). At 11.10pm she text saying he is fine. He is asleep. Then I relaxed. Raj is ok.

20th April 2018

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The plan was to pick Raj up at 9am as his grandma had work. In the morning I rang his grandma. She told me she was staying off work so I didnt need to get Raj straight away. I said to her I need to come get some urine off Raj though. I had a nurse coming at 10am to take a sample (they just wanted to make sure there was no infections following the hospital visit). Then I heard Raj. “Mum, I want to come home”. I said “Im coming to get you baby”.

Soon as I arrived and saw Raj, I knew Raj was dying. His grandma said he has a rattle in his chest. It started a little while ago. That rattle is known as the death rattle. I exptected we had 1-2 days left. I took the urine sample and went to the bathroom to compose myself. Raj’s dad looked at me and said is he ok? I said “No Aman, nothing is ok” with tears streaming down my face. I knew this was it. I thought, I will take Raj home, speak to the nurse and then tell Raj’s dad come over. Raj was struggling. He couldnt walk. We had to get the wheelchair to take him to the car. I strapped him in and we started the 10 minute journey home. His grandma also came with us in the car. Raj kept asking, “mum are we home yet?”. I think he asked 3 times.

When we got home I forgot Raj couldnt walk. I opened the door, and he got out and started walking in himself. I stabalised him to the door. We walked in. Raj got straight into bed. I said shall I turn you on your side baby. He said “yes”. I then saw Danni ( the nurse) pull up. I said to Rajs grandma. One second. I ran out and said “Danni Raj is not right”. In the 2 seconds I was outside Raj asked his grandma for Oso (his fave bear). She handed it to him.

Danni came in quickly. She looked at Raj and said “Raj are you ok?” Raj started to gasp. He said “my back, my back”. Danni said “Suki hug him right now, right now”. I jumped on the bed and hugged Raj so tight. I told him over and over I loved him. 30 seconds later my beautiful baby boy stopped breathing.  💔💔💔💔

His grandma hugged me as I hugged him. It took seconds. Just seconds and he was gone. My baby was gone. Grandma rang dad and my mum and dad and told them to come straight over.

My baby came home to me. At home in his favourite place. In his bed, safe with mum and Oso. With his grandma and a nurse there. I know Raj would have felt so so safe. You have this great notion, that your final goodbye would be so peaceful. The truth is if I had had that chance, it would have meant Raj had died slowly. Shutting down. Non responsive almost. I didnt want that for Raj. I didnt want to watch him not eating , not drinking, just sleeping, and on pain pumps. 4 days earlier we had gone out to see Dinasours In The Wild In London. We enjoyed every moment we could.

The doctors and nurses said they have never had a child die like Raj. His head nurse said in 40 years, 1st time she has seen this. She couldnt believe Raj had walked in minutes before dying. He was hardly on any pain meds. Usually, they have to administer a pain pump. Which is constant. Dr Sadrah the doctor we saw 2 days earlier came over to pronounce Raj officially. He looked at me and said you never know. He didnt see this coming as didnt Raj’s consultant and nurses the day before. He said, when I saw Raj I was pleased he was so so well. He had told the surgery staff, Raj was amazing well despite all the treatment he had.

That was my boy. He was a soldier and I am extremely proud of him and grateful. Grateful he came home to me. Grief can destroy you. I have sat and thought I should have kept Raj home that last night. The truth is though, I would have been so tired I wouldnt have been able to care for Raj. I would have been angry. Angry at the situation and I would have been short with Raj.  I would have then felt so so guilty that I wasnt at my best with Raj. His consultant also made me see something. Grandma later informed me Raj had been hallucinating during the night. Had Raj been with me, I would have rang the hospital. They would have asked me to take him in. The likelyhood is Raj would then have died in hospital. I didnt want that. Those last moments were so traumatic though. I have watched it happen over and over in my head again. Watching him gasp and just pleading with him in my head, “just breathe baby breathe. Take my breath but just breathe”.

Raj held on, he came home to me. I love him so so much for that. Not only was he my son. He was like my little best friend. We had the funniest reltionship. So much fun. This is as sad as it will get. I wanted to share this as it helps me to write about it. Get it out, but also I hope it gives others hope and faith. Raj was protected until the end. He didnt suffer the way he could of. God made his journey smooth and Raj is now safe. Thankyou for choosing me to be your mummy Raj. ❤💚

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I have visions of him laughing and running around crazy. Being so so cheeky! My posts from now on I am going to try and show you what a funny guy my lil man was, because thats why all of this was worth it. Raj lived a good good life. I want to share how happy he was. Next post…I will show you my crazy child more! ❤

p.s That urine sample I took that morning, I couldn’t come to throw it away. I mentioned this to someone I know. She looked at me and said “omg, that’s his piss though”. That’s a typical response from someone who doesn’t get it. It was from my son. I couldnt get rid of it. I told Raj’s nurse could she take it. It will feel like I done what I was meant to with it. She told me Suki, It will sit on my desk as I dont want to throw it away too! She suggested I put it in a plant pot and grow something. That’s exactly what I did. This plant pot has been lovely named Raj’s piss plant by his cousins 😊🤣❤.

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