Day 26, Childhood Cancer and Histio Awareness Month. Rayaan’s story; LCH.

On 18th January 2014 we welcomed our first child, a perfect baby boy named Rayaan Brown. He brought so much joy into our lives. As new parents we delighted over every ‘first’ and every milestone Rayaan reached. He was a chubby, happy and playful little boy with the most calm and gentle nature. Before we knew it, Rayaan’s 1st birthday approached and we celebrated with all of his friends. Everything was perfect.
Just two weeks after his birthday, on Saturday 31st January 2015 our lives changed forever. Rayaan woke up lethargic and unlike his usual playful self. Unable to drink his milk and visible lack of energy we knew something wasn’t right, so we took him to the walk in medical centre and waited to be seen.
Whilst in the waiting room, Rayaan was crying and seemed unsettled. We were trying to comfort him, but within a few minutes the unimaginable happened. He suddenly became unconscious. We were calling his name over and over again, but he did not respond. That horrifying moment sent us into complete shock and we could not comprehend what had just happened. We screamed for help and suddenly Rayaan was lying on the floor of the waiting room with all the doctors surrounding
him, giving urgent medical treatment.

His heart was still beating, but he couldn’t breathe properly.
We felt numb and confused and didn’t know what to do. Everyone in the waiting room watched on and paramedics arrived on the scene after what felt like eternity. They could not stabilise Rayaan because they didn’t have medical equipment small enough for him and in their words had to ‘scoop and run’ to get him to hospital.

Within a few hours Rayaan went from waking up at home with mummy and daddy, dancing to music on the drive up, to now lying sedated in a hospital bed. He was surrounded by tubes and a ventilator to help him breathe.

We were heartbroken and there were no answers.

We were initially informed that Rayaan had pneumonia, but once further CT scans were taken we learnt that it was something much more serious. They sat us down to show the scan of his lungs which showed severe cystic lung damage, not just in one lung – but BOTH lungs were severely damaged. The consultants told us they had never seen anything like this before. They were stunned as Rayaan looked so healthy and had no history of illness.

We just wanted to hold him and take him home so everything would be okay, but we couldn’t. Things rapidly got worse over the following days when both of Rayaan’s lungs collapsed and emergency surgery was needed to help him breathe. They were unable to perform a biopsy of his lungs as he was too unstable, so had to biopsy some mild rashes he had on his skin. These had previously been dismissed as eczema by GP’s.
We were finally given a diagnosis of Langerhans Cell Histiocytosis (LCH) which is a rare blood cancer.  Treatment was started immediately and involved giving steroids and chemotherapy. Rayaan’s case was described by the consultant as a ‘rare presentation of a rare disease’. Maybe only 1-2 per million of cases like his. We had to stay at the hospital from that day onwards. Rayaan was taken off the ventilator after two weeks and showed so much strength when he woke up. We got to hold his handand even feed him and make him laugh. We would read stories all the time so he could hear our voice even when he was sedated and we always had music playing in his room.

He still smiled in spite of so much suffering and we held onto every single moment together trying to distract him from all the medical treatment. He remained so calm and gave us hope, but we only got him back for a short while.
After three weeks, further CT scans showed that the treatment was not working and Rayaan’s lungs were not healing. The chemotherapy also meant that his immune system was unable to fight infections anymore. He suffered further lung collapses and had to have multiple surgeries and drains in his chest to help him breathe. When we were losing hope, we reached out to consultants worldwide including Dr McClain at Texas Children’s hospital. He offered alternative treatment options and never gave up. All of the staff at Princess Margaret Hospital in Perth did everything that they could, but the LCH was too advanced and we were running out of time.

Despite all efforts, our little boy fought with everything that he had left, but he was just a baby and he was getting tired. On the morning of Sunday 15th March 2015 Rayaan passed away peacefully in our arms, just 6 weeks after diagnosis. It was mother’s day.  A day we will never ever forget.  As part of his everlasting legacy and a vision to keep his name and memory alive, we have set up the Rayaan Brown Foundation. It was officially registered as a charity in the UK in 2018 and we hope to achieve extraordinary things in memory of our amazing little boy.

Please support us on this journey on our facebook page: http://www.facebook.com/rayaanbrownfoundation and on Instagram @rayaanbrownfoundation

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diaryofanoncologymum

I'm a 34 year old Mum of two from Liverpool. My son Jack was diagnosed & successfully treated for a rare blood cancer called Langerhans Cell Histiocytosis in 2014. He has recently relapsed so I have decided to share the journey. My reason for being so open this time round is three fold; I want to raise awareness of childhood cancer, I want to reach those parents & families who are just getting a diagnosis & (selfishly) I find writing therapeutic and feel that sharing the story will help me get my own head around things.

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