James is a blonde-haired charmer. At 19 months old he has everyone wrapped around his little finger. From the nurses at Leeds General Infirmary (LGI) to the ladies at Eckersley House, and of course us!
Behind his warm smile and twinkling eyes, there’s a battle our son is fighting that many wouldn’t even realise.
James has a rare condition called lymphangiomatosis, which is where the lymphatic system is widely malformed affecting many areas of the body. Our son has the most extreme form of the condition which means that already, at such a young age, he’s had five major operations, undergone extensive medical treatment and spent all his life in and out of hospital.
He has had over 30 chest drains since being 12 weeks old as he suffers from recurrent pleural effusions, where fluid builds up in the space between his right lung and chest wall which needs to be drained to help him breathe. For some time his condition was manageable and we looked after him at home, but last August, James took a turn for the worse and was admitted to hospital.
We didn’t go back to our home in York for nine months, but life at the LGI became manageable because of the wonderful team at the hospital and The Sick Children’s Trust which gave us free ‘Home from Home’ accommodation just minutes from James’ bedside. It’s became our second home.
We stayed at the charity’s Eckersley House which was there for us throughout James’ treatment. It was a place where we could go to for some privacy away from the wards and it’s somewhere we could go and have a restful sleep, as we knew we are so close to our son.
Without Eckersley House we would have been travelling every day to see our son. And we’d have had to leave his side every night, which just wasn’t an option. There were nights where Simon and I were sleeping and all of a sudden the phone in our room at Eckersley House would ring and it was the ward to say James needed us. Because of Eckersley House there was no mad panic as we knew we could be at his side, holding his hand in just minutes.
Eckersley House became somewhere we could take James for a bit of normality. We could never go too far from the hospital, so being able to pop across the road for a bit of family time was lovely. James would have fun in the playroom, we would have lunch all together at the dining table and at the end of the day we would take him back to his ward and do what every other parent does, give him a bath, a kiss and tuck him into bed.
Despite all he’s been through and continues to go through – our son isn’t phased by anything. He would roam the hospital corridors on his tricycle, waving to any passer-by. He’d laugh and light up the ward with his beautiful smile. He’s a little cheeky chappy who simply loves life.
After nine months in hospital, we started to prepare to bring James home. Because he can lose over a litre of fluid a day, he doesn’t have the vital nutrients to help him grow so he is on a method of feeding, TPN, which we needed to be trained on. And as James now needs a chest drain permanently in place we were also trained on how to manage this by doctors on his ward. The fact we were on site at the hospital meant we could have the specialist training we needed and became confident ready for when we went back home.
We started by bringing him home on day visits, which was really great. James started to discover his home again, going on the garden swing, discovering how to walk up the stairs and playing with all his toys. It was as if we’d never been away, as if our hospital life hadn’t happened. He just adapts and we adapt with him.
We’re not sure what the future holds for James, but what we do know is that Eckersley House and the fantastic team at the LGI will be there for us, no matter what. And that gives us great comfort.
Eckersley House has been there for us in the most difficult time of our lives, and has helped us cope. We stay focused and make sure that we do whatever we can to make James happy. Every day we thank our lucky stars that he’s with us. Some days the situation can hit us harder than others, but what gives us strength is our beautiful son, who constantly surprises us and makes us very proud.