RU's Fund

Ruan James Shaker was born just a few days before Christmas 2016, four days shy of his due date.

He came into the world after a straightforward water-birth weighing a healthy 9lbs 6oz.

Once home, he continued to thrive and we felt unbelievably lucky to have him in our lives. His laid back nature provided an overwhelming sense of calm. He brought a new dimension to our family, which we all (including his sister, Isla) benefited from. While I was pregnant we often talked about how much more chaotic our lives were bound to become with two children, but strangely the opposite was true.

Ru centred us.

He was a healthy, happy baby and joy to be around. I know this might seem like mother’s love talking or rose-tinted glasses, but I often commented to Sasha (my husband) how much more relaxed and content I felt. Ru had brought something very special to our family. His big brown eyes seemed so much wiser than their age, and it was somehow reassuring to gaze into them.

 

 

RU's Fight

Just six short months later came a date that will forever be etched in our families history. Friday 16th June, after three weeks of GP visits, health visitor appointments, out-of-hours doctor visits and trips to our local A&E, we were now in the Intensive Care Unit (PICU) at Great Ormond Street Hospital (GOSH).

In the three short days we had been there Ru had already been intubated, had an MRI scan, had a PIC line inserted (for chemo drugs to be administered through) and had his biopsy operation. Already in his short cancer journey we had heard the words ‘this operation is extremely high-risk, we have only had 25 of this type in the history of GOSH’.

The biopsy stage is usually relatively straight forward, but because of the location and size of Ru’s tumour the intubation and biopsy were going to bring their own set of problems.

The anaesthetists and consultants could not predict how Ru’s airways would cope with intubation. However, there was no decision to be made - as without a biopsy there would be no diagnosis, and without diagnosis we wouldn’t know which beast we were facing.

The operation went ahead and Ru surprised everyone by coping remarkably well with it all.

At 7pm the following day we were taken into a meeting room to hear the results. Nothing could have prepared us for what we were about to hear. Not only did our beautiful Ru have a malignant tumour in his chest, but an extremely rare type of paediatric cancer with very little information available and a ‘dismal prognosis’. Cases of survival were in the vast minority. The next few hours went by in a blur of disbelief, anger and tears. Early the following morning we woke after a couple of hours of broken sleep and headed back to the hospital, knowing that our son needed us and we needed to fight for his chance of a future, no matter how slim that chance might have been.

In the two months that followed - we armed ourselves with research, schooled ourselves in medical terminology and threw ourselves into a world of consultant meetings, intensive care and chemotherapy treatment.

We spent only a few short weeks on the oncology ward, as most of our 10weeks in GOSH were spent in PICU with Ru fighting the secondary problems that the tumour was causing. He had an emergency operation with the hope of resecting the full tumour, but it wasn’t possible and it fell to chemotherapy to try and get rid of the remaining bulk.

The tumour was stabilised with chemotherapy but our consultant believed that the deterioration in Ru’s lungs was a clear sign of disease progression. His breathing was getting much more laboured and he was needing more and more oxygen to keep his lungs inflated.

Devastatingly in the early hours of Wednesday 16th August, his little body had been struggling for too long and he could not carry on. Ru’s oxygen saturation crashed, and though the medical team tried to revive him there was nothing more that could be done.

Our beautiful son took his last breath in our arms, in a hospital room surrounded by love, in the same way he had come into the world just eight short months before.

 

I will forever remember the deep sadness that moment brought, from that day on our lives have changed and our son had been robbed of his future. Ruan was a complete gift to us and his future should have been laid out in front of him for him to explore and for us to enjoy.

Although he was just a few days shy of 8 months when he passed away, I know that our beautiful boy was thoughtful, kind and the most loving son I could ever have wished for.

I will forever cherish every kiss, every cuddle and every minute of his short life. I will remember how he would look up at us, his eyes filled with love, holding your gaze for as long as you would let him.

Three months have passed by in a blur of grief and attempts at readjustment to life. These months have taught me that like Ru, our grief will always be part of our family now, present in the happy times as well as the sad. Emotions may come and go and some days are harder than others but I also know that we owe it to Ru to try and help fight this battle, for him and all the children still fighting this cruel and indiscriminate disease.

Our lives have fallen into three categories, before cancer, during cancer and after cancer. Every day brings its own challenges but we are determined to remember Ru in all that we do and to give his sister the best possible childhood. 

Our hope is that in setting up this fund in Ru’s name we will help other families like us who get thrown into a battle with a rare paediatric cancer. We do this to support the great work that Grace Kelly Ladybird Trust are already doing and in the hope that other families will have some light to aim for and a chance of a future free from cancer.

 

 

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