So tomorrow is Pudding’s last ever Enzyme Replacement Therapy, the end of preventative treatments for his condition and I guess in a way the official start of the final stages of mucopolysaccharidosis. But I don’t want it to be a day of mourning for what might have been.
I want it to be a time to celebrate.
To celebrate our consultant who never dictates but makes every decision a collaboration with us, and tried all he could to get around Pudding’s stupidly strong immune system.
Celebrating the scientists who made this treatment possible and those who are still working on new and better approaches.
I want to celebrate our specialist nurse based in Manchester who has always been an immensely patient go-between and coordinator for all things medical.
Celebrate our NHS – an amazing organisation that has provided this expensive medicine for Pudding without us losing everything or having to go bankrupt.
But mostly today I want to celebrate the homecare nurses who have been almost part of our family for the last five and a half years. They have administered this ERT week in week out, being a reliable steadfast presence through the most difficult of times. They have been a sounding-board for medical stuff, a listening ear for worries and cheered for our successes. They have cuddled Pudding, held his hand and loved him as much as we do. They have listened to T’s school work, played games with him and even thrown themselves around on the Wii. They have treated Pudding at school, getting fully involved in all sorts of class activities.
Since the onset of Covid they have still come to our home, working in PPE coveralls and masks for the four hour infusion. They have continued to come through staff shortages and their own family stresses. They have been meticulous about cleaning and keeping everyone safe. They have been a breath of fresh air and sanity throughout a challenging year. They are amazing.
I won’t miss holding Pudding for needle pokes, or lugging heavy boxes of supplies around. But I really will miss these lovely people.