How is Poppy? It’s a question we’re asked daily, with increasing frequency as our story travels, and one I always struggle to answer.
Poppy is brave. Not just the bravest little girl I know or the bravest three year old. But hands down, the very bravest person I have ever met. To go through all of this and still come out smiling is an incredible achievement at any age and one we are so proud of her for.
We’re also beginning to tell her that actually, she doesn’t have to be brave all of the time. That it’s okay not to be okay with this. There are so many new things she has to do, rules she has to follow and daily occurrences which she has no choice or control over, that we wouldn’t blame her for resisting the added pressure of being brave as well. But so far Poppy is remaining stoic in the face of Leukaemia, steadfastly refusing to let it change her sweet nature, polite manners and core values.
I never wanted this blog to be a bear all of Poppy’s symptoms. One day, she will own this story and tell it in her own words. This blog is more about our thoughts and feelings as we face cancer as a family. However, I recognise that many of those reading have absolutely no idea what our life is currently like. Why would you? I certainly couldn’t have pictured this scenario before it became our reality.
There are so many people I want to protect here, from Poppy herself to everyone around us hoping for a positive answer to the question of how Poppy is doing. Let’s not paint a rosy picture though. This diagnosis has devastated us. It affects everything we do and every decision we make throughout each and every day. There’s so much truth in the advice of “day by day” – we genuinely don’t have any plans past tomorrow when we’re due back in Gloucester hospital for another intrathecal administration of chemotherapy. The last procedure of our current treatment plan, we won’t know what’s to come next until we receive the results of last week’s MRD test.
Appearance wise, Poppy’s hair is thinning and the steroids have caused her to temporarily gain weight. At age 3, vanity has not materialised yet. We have one mirror in our house, above the bathroom sink, so it’s rare that Poppy sees herself anyway. Of course, she’s aware that her body is changing, but not in the same sense that an older child might be distressed by. More pressing is her physical ability. Our bouncy, active girl hasn’t walked for several weeks. We carry her from place to place, alternating her position between sitting and lying down. Her energy is waning and the majority of her day is spent lying down. The only aspects of her former life which remain in tact are the joy she finds in her beloved books and favourite foods.
We’ve introduced a new sticker chart this morning, so that each time Poppy stands for 30 seconds on her strong legs, she’ll earn a sticker and in time, at the end of each row, a present from the fairy box we’ve created. Inspired by the treasure chest of bravery gifts in the hospital, we’ve built our own version at home, filled to the brim with gifts we’d already set aside for future occasions and also included some of the many items we have received from family and friends. Once chosen, we talk to her about who sent the gift and how she earnt it. We’ve also kept a growing list of everything she has received as a record of how far she has already come.
The craft projects we so enjoyed together in the hospital have been temporarily set aside. Once our aim to fill the long days of waiting around, our focus has now switched to Poppy’s comfort. That’s really all that matters. Keeping her happy and keeping her comfortable. She watches family life from the sofa, absorbing each moment and later talking about it in tiny chunks that let us know she was listening attentively.
Graham hasn’t returned to work yet. Until we receive the results of the MRD test, it’s a thought we can’t even begin to imagine or prepare for. That’s 5 weeks of minimal income for our family. Not that money is directing our choices, but life does go on and bills do still need to be paid. We feel fortunate that with so much support around us, it’s a gentle consideration, not a constant anxiety on top of everything else there is to process. I can’t even imagine facing this as a single parent or on a very low income.
Positivity comes from finding the joy in the small things. There is definitely a feeling that things could be worse, or that we could have more to deal with than we do already. Each smile or laugh or spark from Poppy lifts us up and gives us the energy we need to keep putting one foot in front of the other.
I haven’t always been particularly good at asking or accepting help when it’s offered. Not through pride, just from not always knowing how best to utilise the skills around us. If you haven’t already, please take a look at our GoFundMe campaign or Other ways to help, which should provide some direction on where to start with supporting us.
I’m also usually a bit embarrassed about accepting compliments, but I’m actually really proud of how our family is facing this and have gladly accepted this notion from the many kind people who have got in touch to tell us they feel the same. Our relentless positive approach is already filtering down to Poppy. Instead of feeling fearful, she’s accepted our new lifestyle without question. Of her own accord, she regularly tells us: “I will get better soon. I won’t be poorly forever.”
Aside from the “soon” aspect – the two years plus of treatment is afterall almost another lifetime for Poppy – it’s a sentiment I agree with wholeheartedly. Throughout all of this, I do genuinely believe that one day this will be a distant family memory to look back on. Remember when Poppy first met Daisy and her heart raced with the excitement of their first encounter? Or that time we proudly climbed Catbells with a newborn baby and a two year old? Remember when Poppy had Leukaemia?
Thank you for reading and joining us as we navigate this troublesome path. If you would like more information on Acute Lymphoblastic Leukaemia (ALL) or help with explaining this to the little people in your life, there are some fantastic resources available on the Bloodwise and CLIC Sargent websites.
As always, love and light to you and yours x