Our world view

I haven’t yet managed to organise all of our experiences from the first few weeks in hospital into a coherent post. I filled a notebook with scribbled ramblings in the sleepless nights during that time, but the daily happenings of tests and treatment and the energy they consumed prevented me from assembling anything near a picture of what we were going through. By the time I’d started writing the blog, it made sense to write about the here and now, rather than the days gone by. I’m aware there’s a big gap from those early days which leaves things a little hazy in the timeline of events, so when I can, I’ll try to fill in some of the details.

On the first official day of treatment, Poppy was wheeled down to theatre to have a portacath inserted. A direct route to a vein near her heart, the port does away with the need for a cannula to be inserted each time Poppy needs blood drawn or medicine given intravenously. The port will remain underneath her skin in her body until the entire course of treatment has concluded, whereas the attaching “wiggly” line is inserted during our hospital visit and generally removed the same day before we go home, though during spells of intensive treatment, it can remain in for up to one week. We had the choice between this or a Hickman line, which protrudes from the chest continuously so doesn’t need to be accessed each time. The port access is relatively straight forward given everything else Poppy endures, and with the main advantage being that going swimming and taking a bath are easier with a port, we chose this option for Poppy. It’s nice to be able to return home for a splash of normality at the end of each day and we’ll also be able to take advantage of the pool used by the physio team to help Poppy gain some strength back.

During the same spell in theatre on Day One, Poppy received her first intrathecal dose of chemotherapy. At the time, it was an awful lot to take in having only learned the day before that the disease was present, but I now see the speed of response as the amazing thing it was. Imagine if we’d been told Poppy had Leukaemia, only to have to wait weeks or months for the treatment to begin. It would have been an anxious wait to say the least, worrying about what was in her body. Instead we had no time to consider it and just pressed on with waving it goodbye. Or as Poppy likes to say: “Shoo cancer! Get out of my body!” – a throwback to when she was first talking and copied her paternal grandma shooing cats from our garden.

Before each trip to theatre, Poppy has her blood drawn, a series of questions asked about her general health, a check up from the Consultant Paediatrician and lastly, a visit from the Anaesthetist who has the final say on whether Poppy is well enough to go ahead with the day’s treatment. There is also the small matter of a parental consent form to sign every time, which lays out what the procedure entails as well as all of the worst case scenarios which could occur in unlikely circumstances.

The worst of the 11 forms we’ve signed so far was the overall consent for the entire course of treatment to begin. So much so, that despite there only being room on the form for one parent signature, both Graham and I signed our names together. It was a deep breath, we’re in this together moment. By signing the consent form, it felt like we were taking the ultimate responsibility of the treatment on our own shoulders, rather than on the advice and expertise of the medical team. It felt like we were being given a choice, when in reality, there was no decision to be made. Poppy has Leukaemia and needs this treatment to rid her body of it, so what was the alternative? Graham played Devil’s Advocate by enquiring what would happen if we didn’t sign, and we were told that failure to consent would trigger a legal and criminal process as we would not be acting in Poppy’s best interests. Of course, there was no question of us giving consent for Poppy’s treatment, but it was still a wrench to sign our names against a form which listed no less than 16 significant risk factors. Those being just the major ones.

Ultimately, to be given any chance at a future life, each procedure has to go ahead. Like the day by day philosophy which keeps our daily spirits up, each consent form has to be signed on the basis that Poppy needs this to happen now. There’s no point investing time and thought into each individual side effect and dwelling on the future impact it may have. Whatever side effects there may be to follow, without the immediate treatment, there will be no life to follow. Side effects or not.

A sobering thought and one I’m hesitant to leave you with, so instead I’ll close on a lighter note. We’ve been offered a holiday by a charity. The first trip on an aeroplane we’d planned for our girls next month won’t be going ahead, but instead in the same week we would have been boarding the plane, we’ll be making our way to the New Forest for 5 days in a luxury lodge, courtesy of Hannah’s Holiday Home Appeal. Set up by Hannah’s mum after the loss of her daughter to Hodgkin’s Lymphoma, her charity aims to help other families facing cancer make some memories away from the bright lights of the hospital. As Poppy herself said on hearing the news of our impending trip: “I’m excited!”

Today, after watching an episode of “Nature’s Great Events”, Poppy drew this picture of the Earth, completely of her own accord. Afterwards, she pointed out what she had drawn…the salmon, a tree, paths, roads, a sign and a heart in the middle “because I love you so much”.

There is always so much hope and even now, still so much goodness in the world x

Poppy’s picture of the Earth, with a heart at the centre ❤

6 thoughts on “Our world view

    1. In my defence the cat was constantly trying to come in at the window and door. Also ventured into our campervan and was known to use the garden as a big toilet (not good with a toddler stumbling about). Like you said in an earlier blog, not fighting but facing the adversity! Love you all and think you’re doing amazingly well.xx

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