Saqib's Story

Saqib Raza Ahmed - forever 5

My name is Fauzia Ashraf and I have 3 beautiful boys. Aqib who is 7, Saqib who turned 5 and new baby Atif who is 3 months old.

Our story goes back just a few months ago to the start of the summer holidays 2021 when I was 32 weeks pregnant with Atif. Everything was nice and normal and happy because the holidays had arrived and it was time to have fun before baby came, but then Saqib, my 4 year old, my amazing, clever, funny, cuddly, cute, my absolute delight, started to have headaches. He had never been ill before and certainly never headaches.

He was so happy and healthy. He was always such a sweet, good boy. 

The headaches were sporadic, on and off 5 minute bursts of pain on random days/nights and then he was fine but left me absolutely petrified each time. He then got a teething dribble which was odd but he just wiped it with his sleeve. And then the final straw was a new fear of the stairs. He started bum shuffling instead of being spiderman jumping past me.

These changes happened rapidly over a period of 3 weeks and in that time I made 6 contacts with the GPs from the headaches starting till the next obvious symptom to the last. They had no clue and kept fobbing me off. I had a seperate blood test done and even took him to the opticians on my own accord in those 3 weeks. Not one medical professional had an inkling or were listening when I was saying all these things have happened suddenly and I'm seriously concerned. My son was fine 1/2/3 weeks ago was all I said everytime. They physically assessed the child, but ignored the concerned mother.

Being 32-35 weeks pregnant in those 3 weeks I was hesitant to go to the hospital myself in the middle of this covid pandemic but really, deep down, I was crying for help. I knew it wasn't a viral thing, ear wax, short sightedness.

I knew something was wrong and no one listened to me. I was always respectful and composed, but on the final contact with the GP I refused to leave and said enough, headaches go away and we're not going home. I said I'm 35 weeks pregnant and cannot cope.

The GP then phoned the hospital for advice and the peadiactrics said they wanted to see us urgently. We went to Oldham Hospital and I had to say to the doctors there don't ask me anything because I am done in with the stress of these last 3 weeks. They did lots of observations and then a CT scan. Saqib ate pizza for his tea and was happy playing.

The hours passed by and I was the last mum on the ward. They offered me a cup of tea. Saqib was up and off the bed playing and singing and fine. I prayed the late afternoon prayer and sat and waited. I was thinking when are we going to be seen so we can go home?

And then they came. Three doctors and a nurse. The nurse came to stand next to me and the doctors sat infront of me at the foot of the bed. They said they're really sorry, it's bad news mum. Long pause..... I put my cup of tea down and just listened. Saqib has been having headaches because the scan shows a cancer tumour on his brain. They said this as he was jumping on and off the bed playing. I said no way, he goes swimming, karate, ran a full track at the park 2 days ago, it can't be. I knew the headaches were bad but cancer?! I just couldn't believe it. My Saqib?! Cancer?! The boy jumping and laughing right in front of us?! In his brain??!! My 4 year old baby?! They just stared at the floor in silence until I had no choice but to accept what they were saying. I looked to each face. They were just so sorry.

I broke down in that instance and had to be physically removed from the room. That was the 13th August 2021. They had given me the worst news a parent could ever receive. Saqib has cancer in his brain. I eventually mustered enough strength to phone my dad and husband but couldn't speak to anybody else. It really was too much.

Only now have I realised that the 13th August 2021 was Saqib's last ride in mummy's car and daddy's car. It was his last day at home. The last night he slept at home. His toys were left where he last played with them all over the house and his duvet sprawled over his bed. That was his last day ever at home. That day was the beginning of the rest of my life.

We were transferred to Manchester Children's Hospital the next day and an MRI scan was done on the Sunday. I had to go home on the Monday morning as I had a pregnancy growth scan for baby but I rushed back to Manchester ready for the diagnosis. Saqib was my priority.

It was held with JP Kilday, a lead oncologist. He was lovely, very knowledgeable and supportive. He took the meeting nice and slowly but I could sense that was because he was building up for bad news. Then he apologised. He apologised because the tumour on Saqib's brain was DIPG. Inoperable and incurable.

No child had survived DIPG in the world. It is an aggressive childhood tumour on the brain stem. Too deep in the brain to be removed. There is no cause but there is also no cure. The top part of his brain would still function so Saqib would still be alive but trapped in his brain as the tumour would press on his nerves and disable him. It would take all his functions such as talking, swallowing, sitting, walking. It had already impacted his sight and balance as he was scared of stairs. It would eventually then take his ability to breathe and stop his heart beating and kill him.

The advice at this point would be not to resuscitate as the nerves in the brain would be fully damaged by the tumour. Our little boy was going to die. The option of radiotherapy to prolong his life by months, not save his life, depended on his health. We were handed a death sentence for our son. 

I asked all the questions a mum would ask. Will he go to school and start reception class in September? I had already brought the uniform at the start of the summer holidays. Will he be able to go home? Will he live to age 5? 10? Can you surely not operate? Are you sure it's cancer? It all depended on his health and we were told to take it day by day. We promised not to leave his side so he always had mummy or daddy with him. It was our final duty to our beautiful son.

In the mad rush of going home for the pregnancy growth scan and coming back to Saqib, we were confused as to why Saqib wasn't speaking and getting up off the bed. We assumed maybe it was the sedation from the MRI scan the night before. They said sedatives wear off, it's the tumour. It's aggressive and it is having a bleed. So, from the 16th August 2021 Saqib was mute, paralysed, in nappies, using non verbal communication like nodding and pointing.

In days I had already lost my little love. I can't remember what my little chatter box's exact last words were. Over the next few days Saqib was not well enough for the biopsy or radiotherapy. It was end of life palliative care.

One son was dying. One son was unborn. One son was staying with my parents/ siblings 45 minutes away from the hospital. My life was unrecognisable and I have no idea how I coped.

Over the next 7 weeks the days were up and down.

He was not stable enough to come home and I was now heavily pregnant. The nurses made me feel safe in hospital and they provided us with excellent care. Some days Saqib was smiling, some days his tears would fall and we would try guessing what it could be to make him smile instead. He was on medicines through a syringe driver in his leg and a milk feed through his nose. When he was agitated or in extreme pain they would inject needles in his leg. Some days he slept all day and night. Other days we would work out he wanted to play with his pirate ship or watch Aladin or the Incredibles movie. His Buzz Lightyear and Mr Incredible toy never left his side. We threw him a 5th birthday party where he got to meet his cousins for the last time and then had a lovely intimate party on the 19th September 2021. My Saqib, officially 5. 

I was booked to be induced and gave birth to a beautiful little boy 2 days later on the 21st September 2021 at Saint Mary's hospital. I was so scared Saqib would die whilst I was in labour. I prayed to Allah that Saqib would live to meet his brother and his pain would be eased as I underwent each contraction. We had special permission to take baby up to the cancer ward to meet Saqib as time was not on our side. We had all the boys together that night and Saqib was so happy, you could see it on his beautiful little face. Saqib was finally a big brother. He met the baby he used to sing to in my tummy before the headaches started. All 3 of my boys were together and we were a complete family. I couldn't help but feel it was not fair that this was the case while we were in room 17 on the children's cancer ward. We should have been happy at home.

The day after he met his brother, Saqib's moods worsened and his meds kept on increasing. I couldn't leave one baby for the other and so baby Atif and I slept in family accommodation and walked over every morning and night. His dad stayed with him in the hospital room and Aqib was dropped off at the weekends. We couldn't have got through this incredibly testing time without the help of my family washing our clothes, bringing supplies for baby and our friends feeding us and keeping us company. The new family normal was crazy but at least we were together. 

And then just 13 days after his brother was born, Saqib had a bad weekend and died on Monday 4th October 2021 at 3.16am. He stopped breathing and I felt his little heart stop beating. Now, I had actually lost my little love.

3 weeks of headaches, 7 weeks of hospitalisation. Just 10 weeks prior we were normal and happy. DIPG is so cruel and aggressive and awful. It has taken my beautiful baby from this world, our family and my arms.

We lay with him for a few hours until the prayer at dawn and I took some good last looks at his beautiful face and little hands. He was still so beautiful and I was still so proud of my son. I stared at him and thought about how he used to smile and laugh and joke and how he used to hug and kiss me. I just couldn't let go of those beautiful little hands. I still struggle to accept that these things will never happen again in this life.

Everything is so bittersweet. The night baby Atif came home, was the day we buried Saqib. Everything we do will be Atif's first and our first without Saqib. We believe children are innocent and those who pass away are safe and happy in heaven, waiting for mummy and daddy to join them. But we also believe that children should not die from cancer and that one day a DIPG diagnosis will not be a death sentence. Only research, education, testing and trials can help to do this - please support the amazing work done by Abbie's army.

My view is clear - there is no word to describe the pain of losing a child because it is simply unbearable, unimaginable and unnatural.

In loving memory of Saqib Raza Ahmed - forever 5. My beautiful boy, my best friend. X