‘The nurses and consultants on PICU were amazing in the support they gave and they never gave up.’27 May 2022
On the 3rd February 2020, Peter Reed and his family’s life changed dramatically after Jacob, his grandson, was found to have a 5cm tumour on his cerebellum.
After being unusually sleepy and throwing his head back randomly, Jacobs parents Simon and Katy took their son in for a doctor’s check-up, which quickly turned into being blue-lighted to St George’s Hospital after revealing a tumour which doctors quickly placed a temporary shunt to relive the pressure cause by built up fluid around his brain and subsequently removed the tumour.
On 16th March 2020 Katy and Simon heard the news that no parents want to hear, it was cancer, a Medulloblastoma. By the end of March, Jacob was in the Royal Marsden, Sutton, where he received three rounds of intense chemotherapy, by the end of which he was wiped out; he had no immunity for over two weeks, couldn’t eat without being sick, was heavily reliant on numerous blood transfers.
In May, Jacob woke up with his stomach the size of a beach ball and blood in his nappy. He was transferred to St George's PICU where he stayed for almost 2 months; despite multiple scans and blood tests, no one could figure out what was wrong with him. Every major organ was being monitored, tested, treated but the inflated stomach/bowel was putting pressure on Jacob’s lungs and he was on a respirator. During this time Katy and Simon were told to prepare themselves for the worst but Peter, Jacob’s grandad, says, ‘the nurses and consultants on PICU were amazing in the support they gave and they never gave up.’
Jacob went through a period of improvement throughout July, being moved to Pinckey Ward as he was no longer considered an emergency patient, however, by the end of July his stomach was still large and he showed no further signs of progress. The Gastroenterology surgeons felt the best course of action was to operate and what transpired was that chemotherapy and a fungal infection had rendered Jacob’s small bowel pretty useless, it had congealed to form an almost solid mass.
Where other surgeons may have seen a hopeless case and removed the small bowel, leaving a 19month old with a limited quality of life requiring round the clock care, the surgeons at St George’s worked on Jacob for over 9 hours doing pioneering surgery to salvage any further viable small bowel he had left to be stitched together and removing a blockage in the large bowel.
Where COVID meant many families were thrown together, for Jacob’s family it meant they were torn apart during one of the most difficult times in their life. Only one parent could be on the ward at one time and no other visitors were allowed in the hospital. Thanks to the incredible team at St George’s, Jacob was able to go home for a few hours on Christmas day- this was the longest Katy, Simon and Jacob had spent together in 8 months.
Jacob continued to grow stronger and finally came home before Easter 2021. Jacob’s strength, determination and cheeky character shone through and with his parent’s perseverance to get him to eat properly again, his diet currently consists of chocolate mousse, biscuits and chicken nuggets! The decision was made that as long as Jacob’s scans showed no relapse or reoccurrence, he would not have any further cancer treatment. So far, all the scans have come back clear. The worry of a relapse is constant but slowly gets easier with time.
Peter said, ‘There are no words that can fully comprehend the gratitude Jacob’s family have for the NHS from start to finish but in particular the surgeons (both Brain and Bowel), all the doctors, nurses, HCA, counsellors, play teams, physio, speech and language teams and not to forget the cleaners, porters or dinner ladies that have helped in the care for Jacob and for making a bad experience somewhat bearable for the parents. He still has a long way to go, he has a year of development to catch up on, he has lost his high frequency hearing but improves every day and for that the family could not be more grateful.’
To thank St George’s Hospital for everything they did for his family, Jacob’s grandad Peter has decided to become a Champion for St George’s £5m Children’s Appeal – It’s Time for a Change.