I slept on a camp bed next to Teddy the whole time he was in hospital, and family and friends were not able to visit us due to Teddy’s compromised immune system. Although we had a lot of virtual love, it was really hard because we were completely isolated and I was on my own for most of it.
Difficult months in hospital
After three and a half months in hospital following his transplant, Teddy and I spent a few weeks at a hospital accommodation halfway house and then we were able to come back home.
Our Family Support Worker Emma was an absolute legend. I don’t know how I would have managed without her. She was there for us throughout Teddy’s treatment. She saw me cry many a time.
We always really looked forward to when Emma came round, we called it ‘Rainbow Day’. She gave me much-needed respite while Teddy and I were at hospital or the halfway house. I knew that I could get away and just do normal things like go to a shop or for a walk.
Practical and emotional support
Emma had had previous experience on the bone marrow transplant ward working as a play therapist, so I felt safe leaving Teddy with her. She understood and she knew all the staff and I felt Teddy was safe. That was really important for me. Those breaks she allowed me to have were so meaningful.
Emma helped feed Teddy and change his nappies. She also always had fun activities for him to do too, such as colouring, playing with toys, drawing, playing instruments and singing. He really loved it when he got to do messy play with paint or washing up liquid. It made him laugh and smile, which lit up the room.
Not only did Emma look after Teddy and make him laugh, she supported me emotionally too. That was so needed and very important. She listened to how I was doing and helped me to get rid of whatever weight I was feeling.
Not 300 miles away
Being back at home, with things a bit calmer, all of the stress from the past few months has really hit me. Although Teddy is quite well in himself, he still suffers with viruses and has a nasal gastric tube for feeding, fluids and medicines. He still gets stomach upsets that mean we can go through a whole pack of nappies in a day; he doesn’t yet have a functioning immune system, so he just can’t get rid of these illnesses.
Feeling positive
Once he has fully recovered, I’ll be able to take him swimming and to nursery and, most importantly, make sure he is vaccinated so that he is protected from bugs and infections, rather than having to isolate him away from everything. I am positive that Teddy will be able to live a normal life, just like his older brother Billy. We just need to get out of this bit we are in now.
