So that was Interim Maintenance. A bumpy start with two unplanned hospital admissions smoothed out along the road with two holidays, a weekend away by the seaside, and numerous happy days spent together in the sunshine. We knew this would be our best opportunity to get out and about with the girls, and it’s safe to say we achieved our aim of making the absolute most of Poppy’s wellness. We even made it back for the final day of pre-school before the summer break – a trip to Forest school to make dens and shelters, before returning for a party filled with food, music, bubbles and dancing. Poppy transformed from her dusty forest school outfit into her sparkly party dress, receiving many compliments along the way. Watching on from the sidelines, I was moved to happy tears by Poppy’s dancing during musical statues. The wild abandon with which she closed her eyes, threw her arms in the air and wiggled her hips was such a moment of pure joy, given away by the huge grin on her face. Quite simply, dancing like nobody’s watching. A good friend was there to hug me as the tears fell, and as I said to her, it’s rarely when Poppy is poorly that I cry, but the moments like these when she is doing the things she should be doing at her age. Her dancing took my breath away and will play like a video in my mind for a long time to come.
We’ve become accustomed to the madness that is our new world, and Poppy has extended her vocabulary extensively to include day to day words like cannula, Methotrexate and 6-MP amongst cancer, Leukaemia and chemotherapy. Last week, she asked if she was neutropenic and was delighted to hear Leukaemia being discussed on the radio. It’s a strange world to hear a three year old speak these words so casually, but we’re grateful that no fear is attached to anything she says.
Delayed Intensification began today with a trip to theatre, as we’ve done many times before. So many times in fact that I’ve lost count and couldn’t answer the recovery nurse who questioned how many visits to theatre we’d had now. The medical teams always greet Poppy by name and ask after me and our family, which is really touching. The hospital which seemed so big and unnerving when we first arrived so unexpectedly has become so familiar and welcoming, that we’re greeted everywhere we walk along the corridors. I know I’m biased, but Poppy is definitely thought of fondly by those who know her. The anaesthetic nurse who looked after her a few weeks ago told me how adorable she is and how pleased she was to hear in the morning briefing that it was her turn to look after her.
There are pictures painted all over the recovery room, including the well thought out ceiling tiles which make the viewpoint so much more interesting from a hospital bed. Behind the desk is a mural of animals with names attached to each one. I’ve often wondered who the names refer to, and have been too terrified to ask for fear that they are the names of dead children. A morbid thought when typed here but your mind goes to crazy places when you’re waiting for your child to wake up from an intrathecal dose of chemotherapy! I realised today that the names are actually the names of the staff, which is a much more pleasant thought.
The walls of the Emily Kent Unit have been blank since we arrived with promises of a re-decoration to occur shortly, so it was a delight to walk in today and find an artist in situ painting a huge wall of the sea, sand and sky. The sea creatures are to be added later and it looks amazing already. Poppy had a little chat with the artist about the sea sometimes being green as well as blue, and we did chuckle with him together when we walked past later to find him adding a touch of green to what he’d already done! A top tip from our own little artist who is making her mark on the world everywhere she goes. There’s also going to be a rainbow wall and we’re both looking forward to it being completed. We’ll be seeing a lot more of the hospital walls for the next 7 weeks, so it’ll be pleasing to the eye and heart to see them splashed with colour.
Tomorrow brings another visit to hospital, with a drug Poppy hasn’t had before so we’ll be riding the next wave as best we can knowing we have many lovely people around us to catch us if we fall x