Will’s story. Mum and dad were told their unborn son would need care

During a 36-week scan, Mum Lu and Dad Dan’s world was turned upside down when they were told the news their unborn son had lesions in both his lungs and bowel and would need specialist care from birth. After being transferred from Tommy’s to GOSH at two days old Will went straight to NICU (neonatal intensive care unit) and was later diagnosed with Myofibromatosis at two weeks. 

Will’s family stayed at Young Lives vs Cancer’s Home from Home Paul’s House throughout his treatment so they could be nearby and not have to go back and forth to their older son’s nursery. Will’s Dad and brother stayed at the Home over Christmas, as Will spent his first Christmas in hospital.

Late pregnancy scans had shown that Will had lesions in both his lungs and bowel and would need specialist care from birth. He was born at 37+2 weeks at Tommy’s, London after a late night ambulance transfer from John Radcliffe hospital.  

He was transferred to GOSH NICU at 2 days old and over the last 9.5 months has spent time on Oncology and more recently Gastroenterology wards.   

In the first couple of weeks, Will had multiple scans and biopsies until a diagnosis of Multicentric Infantile Myofibromatosis was given. Myofibromatosis is a condition of benign tumours which can be relatively harmless. Unless, like Will, they are multicentric and involve the visceral organs.  

Over the next nine months, Will had weekly chemotherapy as well as two life-saving bowel operations, one exploratory laparotomy and one surgery to remove a tumour which was compressing his sciatic nerve and causing a drop foot. The chemotherapy produced good results on his lungs, but sadly wasn’t effective on his bowel. 

During Will’s first bowel surgery, Dan had had to leave to pick up Percy from nursery, as all babysitting options had been exhausted. This was really tough on Dan and Lu in different ways. Dan having to leave not knowing the outcome of the surgery and Lu being delivered the post-surgery news alone. They vowed never to be apart after one of Will’s surgeries again.  

Will has an older brother, Percy. After six months of the family being separated, it was decided that they needed to be closer together with Dan and Percy moving to London if Young Lives vs Cancer was able to accommodate them in Paul’s House. The call came in to say the request had been accepted for a six month stay and the ball started rolling to move the family to London. Percy started at the GOSH Nursery and has been a champ, fitting right in and getting to spend much more time with his little brother and become friends. 

Mum Lu said: “The move has been life changing in so many ways. It has been a huge boost to my mental health, as we had been really struggling with not seeing each other or one of the boys. Luckily, Dan is able to work from the hospital and can now spend more time with Will. It gives us more time together as a family and enables one of us to do some exercise or take just time out of the hospital.” 

“Percy started at the GOSH Nursery and has been a champ, fitting right in and getting to spend much more time with his little brother and become friends.” 

Will was also in hospital for his first-ever Christmas and his family were able to stay in our Home from Home Paul’s House nearby for two weeks over the festive period so they could be together. 

“Percy was at that age where he was a bit more aware and wanting to get involved in the traditions that we wanted to lay down as a family and Dan was there doing it with him on his own. We could have left William but then there was a part of me that was like one of us had to be with him all the time because, it sounds awful but, we didn’t know if this would be our only Christmas with him so I didn’t want him to be left alone at any point.  

“Dan was off sprinkling the reindeer dust and I was with William and then they came over in the morning. They were able to come over really early because they were just a 10-15 minute walk away.”