We’re coming to the end of a phase of treatment called Delayed Intensification. It was a phase I was dreading as we’d been told countless times how hard it could be.
An intensive phase, hence the name. It involved the usual suspects of steroids, oral chemo at home, and a painful injection. Plus the new additions of three new types of chemo – Doxorubicin, Cycloposphamide and Cytarabine. Any new forms of treatment bring an element of uncertainty as it’s always a gamble trying to predict how Poppy would react to the new medicine.
The doctors consider this phase as pretty hard going, due to the battering your immune system faces during this period. And, as we’re all to familiar with by now – low immunities mean neutropenia and hospital stays.
Despite fearing this phase I felt for once, quite prepared for the inevitable so it was no surprise really to find ourselves admitted to hospital with infections twice over this time. In a weird way it’s become part of the routine. Despite never being easy to stay in hospital and split our family in half it certainly doesn’t feel as gut wrenching as it used to in the early days.
I thought it would be worth writing a little about the experiences we’ve had staying as an inpatient with Poppy in hospital, as at times it’s easy to forget the surreality of the world we now inhabit.
I can clearly remember my first trip to Oncology and how real it made Poppy’s diagnosis feel. After all she didn’t look unwell at the beginning of her treatment, and seeing such visibly ill children on the ward came as a real shock. These days it’s the children with hair who stand out. It’s so easy to tell the children at end of treatment who are visiting on an infrequent basis compared to the newly diagnosed faces. They’re always accompanied by terrified looking parents often still in a state of shock. The children carry on oblivious while their parents try to take their greatest fears in.
I have nothing but sympathy for these people, yet despite being in the same situation myself only 6 months ago, its hard knowing what to say sometimes. Quite often there’s not much to be said at all, and it’s better to offer an ear to listen, hear another story you never quite become accustomed to hearing despite the alarming regularity with which these people are arriving.
Staying overnight in Oncology can sometimes feel like a weird and slightly depressing holiday camp. Even if your child is responding well and playing happily it can be the sights and sounds from other patients that bring you back down to earth with a jolt. For all the cheerfulness of the staff and the camaraderie between the parents, we have seen and heard children experiencing terrible pain and suffering which you never quite get used to.
We’ve overheard a mother’s pain as she lost her son, and heard of a lovely little girls passing just weeks after Poppy was in the adjoining bed on the ward. These children, and their families will stay with us forever.
It’s strange to be just a curtains width away from families going through so much, in what could be such a personal and private time. It can almost feel intrusive to be there, but there isn’t anywhere to escape to.
I’ve seen Poppy’s visitors burst into tears as they walked onto the Oncology ward, I forget sometimes what a shock it can be. I suppose to an extent we’ve become immune to so much. In the same way that I used to wonder how the nurses could work on such a ward and not feel terribly affected all of the time, this world of treatment just becomes the new normal.
I’ve heard myself as I’ve chatted to other parents in the parents kitchen, speaking with a whole new vocabulary which would have been alien to me at the beginning of the year. I’d never been any good at science then here I was talking Neuroblasphoma, neutropenia, regimens, stem cells, and lymphocytes. I felt like an expert in a new subject field I had no wish to study. Casually comparing blood counts with other parents, becomes as normal as talking about the weather. It’s as though we’re all veterans, in this together. Some kind of solidarity in despair and fear.
It’s not all miserable though, despite the constant underlying reason that we’re all there. At the end of our last stay Poppy actually got upset when the doctors told her we were free to go home! She wanted to stay and play with the toys she’d grown attached to whilst we were there. She likes to watch as we unfold the parents bed from its cupboard like holding on the wall next to her bed. Being Poppy, she is rather nosey and likes to see who is coming and going on the ward. And although she’s quite shy and doesn’t say much I know she likes the friendliness of the nurses, domestics who remember her name, and especially the fantastic play worker Pip who brings her play doh and paints.
Despite being in such close proximity to other families, strangers and their foibles and snoring I’m really not complaining. We’re lucky to live so close to Alder Hey. It’s such a fantastic hospital and to be able to have family visit us when Poppy’s staying in can be a massive boost (especially if they’re bringing her McDonald’s !) And it’s meant that Oscar can come in and see Poppy so they’re never separated for too long.
I was reading recently that until 1954 children in hospital were only allowed to see their parents for an hour on Saturday and Sundays. This seems unimaginable by the standards of today.
Alder Hey isn’t exactly a home from home, but Poppy is settled there in a strange way. It’s what she knows as it’s part of her little world, as much as the swings and grandparents visits. And, as Poppy is so accepting of her surroundings and situation, I have no choice but to choose to be too.