Waiting For Normal pt.2

Dylan’s cancer treatment is over.

It took 1188 days.

He had 1514 doses of various chemotherapies, 27 lumbar punctures, 35 anaesthetics, 440 doses of steroids, hair loss x 2, several blood & platelets transfusions & a plethora of other meds, underwent multiple scans, biopsies, surgeries, injections, endoscopies, physio, weekly blood draws & he’s missed over 18 months of school in total.
EOT has raised emotions not dissimilar in intensity to those at diagnosis.
17.03.20 was never going to be a huge party; we’re very aware of the possibility of relapse.
We’d tentatively hoped for a quiet family gathering; a meal out & a trip to the toy shop, knowing we’d have to feel our way into our “new normal” slowly; we knew it would take time.

It appears that in some twisted irony our “new normal” is now COVID-19; another life threatening illness we need to navigate in order to keep Dylan alive.

I’m emotionally stunned.

I don’t know how to get the healthy hoarders to understand this new wave of fear we have due to Dylan’s non-existent immune system. We’ve lived in long pockets of isolation over the last 1188 days because our child was being treated for cancer; he was & remains extremely vulnerable.

As schools shut & healthy people’s choices & freedoms are removed, I hope many will reflect on what they have; health, life. The need to self-isolate is to prevent vulnerable people like Dylan from dying, the effort that takes is not lost on me.

I knew we’d have to deal with the anxiety of more unknowns, relapse & post-treatment side effects…but this…now?

Life continues to fan the flames of fear, not just for us but for many (healthy & vulnerable) in uncountable ways. The parallels are there; unprecedented for many but sadly not for some.

So whilst we are unable to do what we had planned to honour the absolute resilience, bravery & downright inspiration that Dylan has shown us since day one, we remain mindful of others who are now seeing this pandemic as something that will undoubtedly change the face of how we all live, have lived & will live.

Dylan, my shining star; may those 1188 days not be in vain.

#livingwithcancer #covid_19 #openyoureyes

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