Gibran Pervez

Asiya's Eternal Charity

Fundraising for Yorkshire's Brain Tumour Charity
£3,856
raised
by 157 supporters
In memory of Asiya Hussein
We fund research & provide support to help people affected by brain tumours

Story

Dear World,


On the 25th April 2021 my beautiful and dearest wife, Asiya, passed away at the young age of 33 years old along with our 5 month old baby, Noah, following a short battle with an aggressive and incurable brain tumour known as a Glioblastoma Multiforme or GBM.


Prior to my wife’s diagnosis, neither of us had any knowledge of brain tumours, apart from simply knowing that they existed and were considered rare. I want to raise awareness of this terribly fatal disease by sharing our story with you (which you will find further below). 


All donations made will go directly to Yorkshire Brain Tumour Charity to fund much needed research and support others who have been affected by brain tumours. 


I have chosen Yorkshire Brain Tumour Charity as they have been an incredible support for me and charity close to Asiya's heart. In addition, the neurosurgeon who carried out Asiya's biopsy works with them when it come's to research so there's a real personal connection.


Asiya may not be with us in this world anymore however her memory, greatness and love will always live on in the hearts of those who knew and loved her. Not a single second of the day goes by when I’m not thinking of you I will do everything I can to try and help find a
cure for this sooner rather than later so that others don’t have to suffer like we did, I know that is exactly what you would’ve done. I promised you that I would carry on and although most of the time it feels impossible I will not break that promise. I love you so much beautiful and we will always be together x


         Thank you for visiting the page and for all of your support.

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Writing about our battle with GBM has been extremely difficult and has taken me a very long time due to the emotions and memories it brings back with such vividness. But my hope and intention is to illustrate that unfortunately this can happen to anyone, how unpredictable, unforgiving and uncontrollable brain tumours can be and inspire you to support ways to help find better treatments and ultimately a cure for this terribly destructive and fatal cancer.

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Our Battle with GBM:

Asiya and I were living happily together, working from home during the pandemic and planning our future. We had only been married for over a year so were looking forward to things like buying our first home, starting a family, creating a bucket list of places we wanted to eventually travel to etc. We were just living a completely normal lockdown life.


Just before Christmas 2020 Asiya noticed that the left side of her body wasn’t functioning as well as normal and felt weak. Over a one month period she saw two doctors who told her that she had a trapped never in her back which was causing the left sided weakness and that it would go with time. During this time Asiya had private chiropractor appointments to see whether they would help recovery however following numerous appointments it did not improve and the movement on her left side deteriorated to the point that she could not move anything (fingers, hand, arm, leg, foot etc).


In January 2021 Asiya then went back to a different doctor who said that her symptoms did not appear related to a trapped nerve at all and arranged for my wife to be referred to the neurogly team at Leeds General Infirmary immediately as she suspected possible brain swelling.


In the first few days of my wife’s stay at hospital we found out that my wife was 5-6 weeks pregnant with our first child which we were extremely excited about. At this point we thought she had brain swelling and naively believed this would be treated with steroids and she would be back home soon.


Following this news and only a few days later my wife rang me from hospital while I was working at home to advise that the neuroglist had been to see her with the results of the MRI scan and told her that she had a brain tumour. Our lives were turned completely upside down,
it was like the start to a never ending nightmare.


I started researching into brain tumours and the statistics around survival were dire. Although we were reassured at this point that due to my wife being young and them not knowing the grade of the tumour yet that the outcome may be better than what we’ve read on the internet and they informed us that each case was different.


Later that day I was invited to the hospital to see Asiya and also have a meeting with a neurosurgeon regarding the scan results. The neurosurgeon went through a great deal of information with us regarding the results of the scans and advised that the area they believed to be the tumour appeared unusual as it was “scattered”. Due to this they could not be 100% certain at this stage with the diagnosis. What he was certain about was that it was inoperable due to it’s location being deep inside the right temporal lobe and very close to key areas of the brain which control movement, sight, hearing, speech etc.


My wife was given a couple of options, to take high strength corticosteroids for two weeks to see whether it reduced the size of the concerned area and brought back her movement on the left side. We were advised that the usual corticosteroids prescribed were not safe during pregnancy so they would have to look at alternatives however all would still come with side effects and risks to the foetus. The other option was to have a biopsy which would involve drilling through the skull to obtain a piece of the tumour for analysis. The risks about this procedure was that if the drill/needle hit one of the key areas of the brain, it could cause loss of sight, speech, hearing etc or even trigger a stroke.


At the end of the meeting me and Asiya discussed everything we’d just been told and tried to digest along with the neurosurgeon’s recommendation we decided to go with the first option of trying the corticosteroids for a two week period. A few days later Asiya was released from hospital and returned home with her bag of prescription drugs, a wheel chair and a walking stick. I became her full time carer while she was home due to her loss of movement.


After the 2 week period there was no change to my wife’s movement so we were called in for another MRI scan to see whether the tumour had changed. The results showed that more of the contrast dye which was injected into her blood during the MRI had been absorbed by the area of concern meaning that it was growing and aggressive. The area of concern was still “scattered” so we were told that the only way to determine what it was and it’s grade was for a biopsy operation to be performed.


As we were left with no other option, knowing that the situation looked as if it was getting worse, my wife and I agreed to the biopsy while still conscious of the risks. The biopsy was booked in and the operation performed around one week later successfully and without any complications.


The waiting game then began for the results which was a mix of emotions as we were concerned about the worst case scenario however at the same time we remained positive and strong. A couple of weeks later we were called in to the hospital to be advised that only some of the results had come back which had confirmed that it was definitely a glioma tumour but the grade was yet unknown.


More time went by until we were called in for another meeting which is when we were told that the tumour is high grade however results were still pending which would determine whether it was a grade 3 or 4. They also advised us of the unimaginable, that this tumour was not curable. However treatment to manage the tumour would be provided. At the same time we were told the shocking life expectancy for my wife was 6 months with no treatment and 2 years with the treatment if it was a grade 4. To add to this the consultant advised that the treatment consisted of intensive chemotherapy and radiotherapy which both can cause issues/birth defects to our baby so we had to decide on whether to continue with the pregnancy or not.


Prior to this meeting while me and Asiya sat in the waiting area I remember us talking about the results we were about to be given. We were so positive that it would be a low grade tumour which had a better prognosis as I’d already been on Google for hours and hours
researching into brain tumours. So then to be told this was truly devastating and heart-breaking.


Following this and on our next appointment we were informed that the tumour was a grade 4 known as Glioblastoma Multiforme which is the most deadliest and aggressive form of cancer even with treatment. We were then required to make a decision on our baby as treatment would differ depending on whether we continued with the pregnancy or terminated. Optimal treatment could only be provided if my wife was to terminate the pregnancy. From the beginning I always knew that I wanted my wife to have optimal treatment although this was a very difficult decision. However this decision was understandably even more difficult for my wife being the mother carrying our baby inside her and her genuinely kind, caring and selfless nature. I reassured my wife that I would support and respect any
decision that she made.


We took our time to make a decision on this as we wanted to explore all possible avenues by speaking to specialists like the Obstetrician regarding the risks of the treatment to the baby, possibility of freezing her eggs and so much more. After a week or so we were both laying in bed on an evening when Asiya said to me that she’s made a decision and wanted to continue with the pregnancy. She could not bear to think of losing the baby and as she had strong faith in God felt that this was part of God’s test for us. We both felt a slight sigh of relief that a decision had been made and became excited at the prospect of us becoming parents together even though we still had everything else going on.


At our next meeting with the neuro oncologist and consultants we informed them of our decision which they fully supported. The consultants themselves said that they would not know what to do if they were in our shoes but very happy that we’d made a decision so that they could start planning treatment. The treatment would consist of radiotherapy only as chemotherapy posed too many risks to the baby. However chemotherapy would be given if needed, after the baby was delivered. Radiotherapy still came with risks due to it’s strength and intensity on the brain as it could cause a number of neurological issues however it was our only hope to manage the tumour. It took a while for the consultants to arrange a schedule for the radiotherapy sessions as there was a lot of work involved to plan this
treatment.


We attended a number of hospital appointments for MRI scans to assist with the planning and for specialist equipment to be made. In addition, a custom shield was designed and constructed by the hospitals engineering team to cover Asiya’s abdominal area in order to
protect the baby from the radio waves which would be bouncing around the treatment room.


Once planning was complete we were given a start date of Wednesday 21st April 2021 for the 6 week course of radiotherapy.


On the evening of 20th April 2021 Asiya began to experience excruciating headaches which she’d never had before, the pain was so unbearable. I immediately rang 999 and when the ambulance arrived they took us straight to A&E which is where Asiya was given many different pain relief medications however the only one which seemed to provide some relief was high dose morphine. A CT scan was also carried out to try and determine the cause of the pain. We stayed in A&E that night and while Asiya slept through due the effects of the morphine I sat watching over her crying and praying to God for the pain to go away, it broke my heart to see her like that.


The following day which was meant to be the first day of Asiya’s treatment we were moved onto the oncology ward and in the afternoon our neuro oncologist came to see us. He himself was quite shocked about the situation and advised us that he’d reviewed the CT scan from last night. He explained that there was a large area of swelling around the tumour which was causing pressure on the skull and subsequently resulting in the excruciating headaches. Given Asiya’s condition they had to put a hold on the planned treatment. The oncologist also told us that due to Asiya’s worsening condition her life expectancy now was only a few weeks. Words can not even begin describe how we both felt hearing this.


After we both broke down in tears and comforted each other we still had hope. Anyone who knew Asiya, will know how incredibly tenacious and positive she was and Asiya was still determined to fight this. Nothing would ever stop her or us from giving up. We still had hope
that she would be the less than five percent of people who live beyond the statistical prognosis period.


Over the next couple of days Asiya was showing improvement to the point that the neuro oncologist agreed that she was fit enough for her first radiotherapy session. On Friday afternoon she had her first radiotherapy session which she handled with such grace and courage even though she felt extremely anxious about it and it’s side effects.


However after a traumatic evening on Saturday when the excruciating headaches presented themselves again, Asiya passed away in her sleep during the early hours of Sunday 25th April 2021 while I lay next to her in another hospital bed.

About the charity

Yorkshire's Brain Tumour Charity funds innovative, world-class, Yorkshire-based research to find better treatments and ultimately a cure. Whilst we are waiting for a cure we ensure that people living with a brain tumour and their loved ones across Yorkshire receive the support they need.

Donation summary

Total raised
£3,855.46
+ £768.75 Gift Aid
Online donations
£3,805.46
Offline donations
£50.00

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