Childhood Cancer Awareness Month – Saqib’s story

Saqib’s story is told so beautifully and poignantly by his brave mum Fozia:

Saqib’s name in Arabic means ‘shining star’ and he always lived up to his name. He lit up our lives by being adorable, funny, caring, clever, creative and very very cute.

He had a normal happy life for 4 years and 11 months. Riding a bike, dressing up as a ninja turtle, swimming and attending karate classes. Saqib especially loved his pre-school nursery. Just like his family, he had charmed his way into the hearts of his teachers and friends. He finished nursery in July 2021 and he couldn’t wait to start reception in September 2021. At this point his older brother was 7 years old, Saqib was 4 (soon to be 5 in September) and I was 35 weeks pregnant with our third child.

But then one day in the summer holidays Saqib complained of a headache. He was fine after 5 minutes but unfortunately the headaches were reoccurring and he would hold his head and cry. Despite being told by medical professionals on 6 different occasions that he was fine, my anxiety and fear that something was desperately wrong with Saqib became increasing high. By the end of the 3rd week and on that 6th visit to the GPs, I became that ‘crazy mum’ who refused to leave the GP surgery until the doctor listened to me and helped me. This was the 13th August 2021.

We were sent to Royal Oldham Hospital and the paediatrics began asking me lots of questions and then told me Saqib would have a CT scan. I was happy that I was being taken seriously and that we were finally getting some help. What I was not prepared for was the devastating news that the results of the scan would uncover. It never occurred to me that my perfectly happy healthy son would have cancer. The words brain and tumour never crossed my mind. The shock of the diagnosis still effects me today. “How can Saqib have cancer in his brain? Saqib is fine!” I find myself repeating this some days.

We were transferred to Royal Manchester Children’s Hospital the next day where a MRI scan was carried out. Further devastation awaited us. On the 16th August 2021, Saqib was diagnosed with DIPG, a rare aggressive childhood terminal cancerous brain tumour with a very short life expectancy of 6-9 months life with treatment or a few short months without treatment.

As fate would have it, the MRI scan revealed that the tumour was having a bleed. This meant it was working very fast and as the tumour was in his brainstem it would mean a loss of a number of his key bodily functions. And exactly that happened. The next day Saqib did not sit up or speak properly again. The cancer in his brain had paralysed his body and made him mute within days of diagnosis. I was now 38 weeks pregnant. How was I supposed to care for a terminally ill child, my 7 year old son and my unborn child? I lost control of my whole life. Everything fell apart.

Saqib was injected with a 24/7 syringe driver in his leg for pain relief and with him being so poorly the option of radiotherapy to extend his life by 6-9 months was no longer an option for us. Our 4 year old son was now placed on a palliative end of life care plan. What was especially difficult was the location of the tumour. Your brainstem is responsible for your key bodily functions such as movement, speech, swallowing, breathing and your heartbeat.

But it hadn’t spread to the top part of his brain which is where he was able to think as normal. He was essentially trapped in his body. Unable to communicate or move but wanting to do all he was able to do just days before. It was like the tumour had hit the bulls eye target and struck my son in the worst place possible.

For the next 7 weeks we found ourselves caring for an unrecognisable child. I knew it was my Saqib but sometimes I still struggle to recognise him as he was so unwell.

Being gifted a Milly’s Smile bag at this point was so uplifting. The first thing I asked the nurse was “Is Milly still alive?” My heart broke when she said “No, sadly Milly died and her amazing mum created this charity in her memory to help other families.” I don’t know why I asked that question. I guess I hoped it was all a lie and children didn’t die from cancer. I knew at this point that I would be forever indebted to Lorraine, Milly’s amazing mum. I felt like I had someone who didn’t know me but cared about me.

September came around and the next school year began. My 7 year old son returned to school and all of Saqib’s nursery friends began reception as Saqib lay on his hospital bed dying. Then days later on the 19th September, my Saqib turned 5. How painfully bittersweet to celebrate your child’s birthday whilst his life is ending.

I was also overdue with the baby and had to give birth. His little brother was born just 2 days after Saqib’s birthday on the 21st September 2021. Again how painfully bittersweet to celebrate the life of your new born child, when your other child is lay there dying.

Saqib was very happy to meet his baby brother but after that day he began to deteriorate rapidly. I sometimes think, despite being so ill, was he holding on to meet his brother with a smile before the cancer became too relentless?

Saqib sadly died 2 weeks after his 5th birthday on the 4th October 2021. His little brother was just 13 days old. I was beyond broken and was sure I too would die.

10 weeks ago he was fine. Just 3 weeks of headaches and 7 weeks of hospitalisation and then he died. His little life so short.

We came home from Royal Manchester Children’s Hospital the day he died and buried my 5 year old son. I don’t know how we coped. It must have been divine intervention.

I still can’t believe we have lived without Saqib for almost 2 years. As his nursery friends now move onto Year 2, I often wonder do they remember Saqib? He talked about them all so much.

On what should have been his 7th birthday, the 19th September 2023, my heart ached at how beautiful and big he would have been. And then 2 days later, my heart ached again when his little brother turned 2.

I am finding new purpose in life and take deep comfort in my faith which guarantees me all children that die reside in Jannah, (the Arabic word for Paradise) under the care of Prophet Abraham waiting to intercede on behalf of their parents. I can’t think where else our beloved children would be. It’s their home where they deserve to reside in pure peace and joy. And our home too when we follow in their footsteps and also leave this world.

Thank you for teaching me there is more to life than this world. How can this world be my everything without you in it my precious son? See you soon Saqib, my second born, my shining star.

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