Today marks three months exactly since Poppy was diagnosed with Leukaemia. She returned to preschool this afternoon for a short visit, our first time back since that fateful day when we came home from Forest School with a very tired little girl. When I look back on those three months, they seem all at once far away and yet so vividly near. What a lot we’ve packed in! 18 overnight stays in hospital and an additional 14 day trips. Over a month of days spent in hospital, equating to a third of our lives in that time. Not forgetting the 5 visits from the community nurses or the 2 times the physiotherapy team have visited our home. Two years to go! But three months less than we started with.
Two wonderful weekends have bookmarked some tiring days in the hospital at the start of last week. Poppy was once again neutropenic and remained off her daily oral chemotherapy until her neutrophils recovered enough to continue this week. Following her blood results last Monday, we were asked to return first thing on Tuesday morning for a possible blood transfusion. As it happened, her consultant was satisfied that her levels were stable and she was well enough in her self to be able to return home after collecting an array of courage beads for the period spent away from hospital.
Holding off on the chemotherapy brings a mix of emotions. It’s a joy to see Poppy come alive again, questioning her way through the world and chattering away happily about her day. It’s also enlightening to see how much the medicine dulls her sparkle – the chemotherapy works by destroying the Leukaemia cells in her body, but also destroys healthy cells too, as it cannot distinguish between the two. A sort of better safe than sorry approach, which destroys everything in it’s path, good or bad. It’s a relief to know the medicine is doing the job it needs to, but also crushing to see how much it diminishes Poppy along the way. There’s also concern about her being neutropenic and the risk of infection this brings. And at the heart of any mix of emotions is the deep sadness that Poppy is having to endure this in the first place.
Having said all that, I have found myself in a new found place of acceptance. That doesn’t mean I’m okay with this, but more that I’m back to having found the coping strategies I need to deal with this daily. Within days of Poppy’s diagnosis, I wrote the post “Feeling Positive” which I regularly read back when I need a pep talk. It’s exhausting being positive all of the time though, and without realising it, I was feeling really heavy before our holiday. Consumed by all sorts of thoughts and sadness, I was finding it really difficult to articulate any of my feelings, and just felt dragged down by the world around me.
Part of the reason for the heaviness I felt was the Disability Living Allowance forms I was required to complete in order to apply for the financial support Poppy is entitled to. I say forms, but in reality, this was a 70 page booklet filled with question after question about Poppy’s capabilities. Or rather, her incapabilities. It’s important to be truthful to gain the correct level of support for Poppy, but it goes against every grain in my body to list everything she is unable to do, rather than celebrate the momentous leaps she is making every day. Negative and soul-destroying, I spent several days completing the booklet late into the night, wanting desperately to be done with it. We’re very grateful to live in a country which makes it possible for Poppy to receive this financial support, but having experienced it for myself, I can wholeheartedly agree that the system needs an overhaul. I’m surprised there isn’t an automatic allocation for well-known diseases such as this one, which have a clear, standard treatment plan. It stands to reason that there would be more explaining to do for a rarer diagnosis, but a one size fits all system of bureaucracy seems a bizarre waste of so much time and resources. The forms have been posted – hurrah! – and now there is a 12 week wait for them to be processed. There’s still the Blue Badge and Carer’s Allowance to apply for, but those can wait for another day.
The change of scenery and deep breaths of sea air we took on holiday couldn’t have come at a better time. With the forms filled in and the weight of them behind me, I felt able to relax and enjoy myself, without the guilt of thinking I should be doing something else. Subtle changes have occurred in my lexicon since our return and I’ve found myself saying ‘Since all of this’, rather than ‘Before all of this’. A sense of how our lives have progressed, developed and evolved, rather than the abrupt, ‘before and after Leukaemia’ shift in our lifestyle. For the first time, I’ve been able to look a little further ahead and started to consider the choices we will need to make about Poppy returning to pre-school and which school she might attend in September 2019. Without realising it, I’d been putting off making any decisions or phone calls, because the future seemed so uncertain and I simply couldn’t imagine a time when these thoughts would become a reality.
Another huge shift this week has been my ability to finally update our family photo albums. The photo’s I’d last printed took us up to Poppy starting pre-school and the snow days which followed in early March. When we first returned from our stay at Bristol hospital, I thought it would be a nice, gentle activity to occupy my mind in the evening when sleep alluded me. However, upon removing the images from their paper cases, I was struck by how much Poppy and our whole lives had changed in just a few short weeks. I was enveloped in a wave of deep, heart-hurting sadness and tucked the photographs away again, not knowing if I would ever be able to look at them again in the same way as the pride I had felt on the days when they were taken.
A sign of how positive I feel again, I spent a really pleasant evening continuing the albums I have started, laughing and smiling at the memories these images bring. The albums now go up to Poppy’s first week in hospital, including the visits from dear family and friends who kept our spirits lifted in those early days. The ones still standing by our sides, holding our hands through each day, whether from near or afar. The ones I am forever grateful to be surrounded by.
The last two weeks have been filled with happy, funny memories. Not just a family facing cancer happy, but any family happy. Not just good days for someone with cancer, but good days. Not just happy photographs of a child with cancer, but happy family photographs to cherish. Poppy is moving really well again, and her independence is being restored daily. She asks for help when needed, but mostly wants to do things for herself with a steely determination. Seeing Poppy laugh, wiggle, bounce and dance her way through her days again fills me with optimism and hope, giving me confidence in the future and so much pride in my heart.
As I write this, from our tidy house having returned from a run with the most uplifting running group around, our lives have found a flow again. Daisy continues to delight us with her fearless, loveable nature and Poppy’s period of wellness has reminded us just how fabulous our girls really are. They’ve also reminded us to enjoy ourselves, and even simple events like a trip to the park have become an adventure in the art of living a little more freely, without expectation or fear of prejudice. By that I mean, sometimes it’s fun to throw caution to the wind and fly along the zip wire without a child on your lap, or to spin so hard on the dizzying spinner that you scream out loud fearing that you might be about to fall off! Don’t worry, the girls had plenty of fun of their own too and enjoyed seeing mummy let go. Their Daddy has always been a daredevil!
There have been trips to the Wildlife Park and the Splash Park in Witney, visits to friends and grandparents and visits from Italian relatives, all nestled amongst happy time spent in the garden and at the Cricklade Festival. Precious time with family and friends at home, at toddler groups, local parks and a birthday party. Life is happening. Breath in, breath out. I mentioned a while ago about how good it felt to have Poppy returned from under the cloud of her medication, I feel like I’ve returned from underneath my own foggy cloud and the sun is shining again in more ways than one x