When my one and a half year old son, Rueben, had a mark on his lip, I didn’t think too much about it. I thought that he might have just scratched himself. When it hadn’t healed after five days, however, I became concerned and took him to our local A&E department in Wakefield. When we arrived I noticed Rueben’s neck had also started to swell. Things escalated quickly as Rueben’s condition rapidly got worse and within a few hours he needed to be intubated and taken to Sheffield Children’s Hospital.
Rueben had several tests over the next couple of days before we found out he had sepsis, two bacterial infections and no immune system. This came as a huge shock but there was more bad news to come. He was diagnosed with acute lymphoblastic leukaemia. I went into a state of panic when being told all of this. A new day brought a new diagnosis. I just tried to take everything in and focus on each moment rather than what the next day would bring.
It broke me into pieces when Rueben was diagnosed with the leukaemia. I’ve never felt fear like that before. The day after he was diagnosed we started to go through chemotherapy plans for the month ahead. A day later however the haematologists explained that Rueben’s chemotherapy had to be stopped due to a sudden spontaneous remission, which they think was caused by the infections or blood transfusions he’d had. At first when they explained it had gone, I thought they meant permanently. It was devastating to find out that they suspected it would return. I felt like a loop hole had opened up though and we had a chance to get on top of the infections and get him well again. Shortly after this the hospital staff told me about The Sick Children’s Trust and Magnolia House. Parents are unable to stay at their child’s bedside whilst they’re on the Paediatric Intensive Care Unit, but the charity’s ‘Homes from Home’ meant my partner, Nathan, and I could stay just minutes away from the hospital so we could be with Rueben whenever he needed us.
“If it wasn’t for the ‘Homes from Home’ that The Sick Children’s Trust provided I would have had to try to find money to stay in a hotel. Thanks to the charity we didn’t have to worry about any of this as we always had somewhere to stay.”
We started to focus on battling Rueben’s infections and he spent ten days on a ventilator to help him to breathe while being given strong antibiotics and having blood transfusions. Sadly a few days after he suffered a stroke as the sepsis caused a small clot on the left side of his brain. Rueben continued to be monitored in hospital and during this time he also suffered a bleed from his mouth and nose. He was taken into surgery to establish the cause and given more blood transfusions. A few days after this though he bled again and was taken back to theatre. Doctors explained that they had found necrotic (dead) tissue in his throat and behind his nose. This was something they had never seen in these areas before and whatever was happening was vanishingly rare. Rueben needed to be intubated again, this time for 48 hours. He underwent an MRI to see the depth of the necrotic tissue which showed it wasn’t very deep and could be easily treated with IV antibiotics which meant he didn’t need further surgery.
Rueben was put on a feeding tube which went directly into his stomach as it was not safe to pass anything through his airway anymore. A few days later we were moved to the children’s ward where he spent another four weeks recovering and day by day Rueben got stronger. When he first came off of the ventilator he couldn’t lift his head but by the end of his hospital stay he could walk a few steps unassisted. In total Rueben was in the hospital for seven weeks and three days. He was supposed to be discharged five days prior to this but developed a nasty rash caused by an allergic reaction to one of the antibiotics.
It benefited me and Nathan massively having access to Magnolia and Treetop Houses where we could do our washing and also stay with one another in such a difficult and unpredictable time. If it wasn’t for the ‘Homes from Home’ that The Sick Children’s Trust provided I would have had to try to find money to stay in a hotel. Thanks to the charity we didn’t have to worry about any of this as we always had somewhere to stay. The kitchen and the lounge weren’t in use due to COVID health and safety restrictions but I was relieved to see that Magnolia House and Treetop House were taking all the right precautions and helping to keep us and our children safe. It helped massively to be so close to my son as he was receiving care from seven consultants and I always had to be close by so I wouldn’t miss them when they came to give me the results. I also was reassured that if Rueben needed me or if anything was to happen throughout the night, I was only two minutes up the corridor on the same floor.
Three months on, Rueben is doing remarkably well. He is running around, laughing and bursting with energy just as any other 22 month old! We still go to the hospital for follow up appointments, check ups and blood counts which will be done weekly until the leukaemia returns. Rueben is in a better position to have the treatment when he needs it now, and when the time comes he will be re-admitted to Sheffield Children’s Hospital for a week or so for IV chemotherapy. The treatment plan is three and half years long, so we expect to see a lot more of Sheffield Children’s Hospital, but in the nicest way possible we hope we don’t have to see too much of it! My Rue has been one in a million for a lot of bad things and we hope he can be the one in a million for a good thing and that the leukaemia never returns. Even if it does though we know we have an amazing team at the hospital looking after him, and incredible support from The Sick Children’s Trust.
Steph Barraclough, Rueben’s mum.
