"The ‘one parent policy’ has negatively impacted the entire span of our year from diagnosis, through chemotherapy, operation, and radiotherapy. It is cruel & unnecessary. Both parents should be able to support their child at a time when they need them the most."
The support and effort required to look after Mason this year was so alien to us. We were only just getting used to having two kids in our family which is a lovely yet challenging feat. Between Em & I we both have our strengths and weaknesses, obviously we tend to gravitate to our own personal strengths to help things flow and make light of work. If there’s one thing that was going to expose our weaknesses it was going to be the division of the family and lack of teamwork.
During times of covid, the one parent policy is being exercised to reduce the amount of people coming into hospital. It makes sense that if less people enter the hospital, it reduces the risk of any transferrable virus. However, there comes a point as which this becomes impractical for patients and their families, and as one of those, we felt this is the point at which this rule should have been reviewed and deemed ‘fucking ridiculous’.
Mason can be a bundle of energy roaring like a dinosaur, or a storm of frustration, when things aren't going his way and can't communicate what he wants, crank it up a notch with the travelling to and from hospital sporting a collection of bags fit for a base camp trek and it adds more pressure, sprinkle a dash of nil by mouth (fasting) ahead of his GA’s for his scans or even some needle jabs and you’ve got yourself a situation. Two pairs of hands are essential!
Whether we were attending the hospital for chemo or antibiotic weekends, it would inevitably mean that Mason was connected to IV machines via his Hickman line for a long time (3-4 days). He was a wriggler, both sleeping and awake and without knowing, he would turn over a few times and pull his lines taut, causing the machine alarm to trigger. In the beginning this used to stir him, wake him up and disturb his sleep patterns. We would call a nurse so they could review & reset the system….this didn't get any easier, he set the machines off all the time. As time progressed and the frequency of the machine beeps increased, Mase just became desensitised to the noise to the point where he could sleep through it and barely flinch. During the nights, he would roll around and unknowingly pull his lines, exiting his chest and tightening to the IV machine adjacent from his pillow, occasionally wrap the lines around his neck or chest. We would spend a fair portion of our time unconsciously on standby untangling his lines and being tortured by the IV machines continually beeping, sometimes they could be reset instantly, other times it would take 5-10 minutes. The one parent policy keeps that parent on edge and unable to rest or recharge ready for the next day, or the next, or the next.
With one of us watching him like this, it felt like we couldn’t leave the room comfortably, to do basic things. Just grabbing a drink or food from the fridge or go to the toilet/shower became a mission. Staff offered to watch Mase whilst we had to leave the room, but with staffing levels noticeably low we felt the guilt or burden that we were taking the nurses time away from other patients on the ward. We needed to take care of ourselves to support our little man as best we could, but by ourself usually meant we would enter the ward with anticipation and leave like a zombie.
During chemo, Masons taste would change and he would pick his way through his food every day, the majority of it being retrieved off the floor (dusted off for dad to finish). We were focused on him consuming calories and keeping his weight up which meant trying to offer him as much variety as we could, hoping that his face would light up and he could tuck into something properly. We brought masses of food supplies to the ward each time, visited the hospital shops, had his favorites on standby in the fridge/freezers and constantly warming milk up in the ‘popty ping’.
In addition to this, the IV fluids he was receiving drove his high nappy turnover up to about 10-15 every day (Blog - Chemo boy round 1), occasionally requiring us to briefly leave the room to log, and store his nappy ready for weighing, before cleaning up. If Mason was a little older we could say, “hey mate – give me 5mins and I’ll be back with some nice food, you okay with what’s on TV” and if he was anything like his big sister he would've understood what’s going on and not freak out too much.
Whilst there was one of us always with Mason, the other one of us was either downstairs, pacing outside, or just sat waiting in the car. Its a lonely, helpless place to be. Often with poor phone signal or dodgy wifi, finding it hard to make contact between each other when we needed to the most.
We challenged the one parent policy, multiple times……the response was along the lines of "these are the rules in place". Staff emphasised, but could not relate.
In Bristol, for Masons surgery both Em & I were split up between supporting him pre and post his operation. We had to push the boundaries and at every opportunity, just turned up together before staff would have to ask one of us to leave. It felt wrong to leave one of us with Mase while he was mummified in bandages, in and out of consciousness from the morphine.
In Manchester, we were just focused on completing the thirty rounds of proton radiotherapy, and felt, perhaps a bit numb by this point. NHS Christie made it easier for us as they had much higher staffing levels and, we're always on hand to support. Radiotherapy posed a different set of challenges, Mason adapted to them well, and was less disgruntled compared to chemo rounds. Whilst still not ideal, this was a little more manageable.
The article link below is another view from a family also attending the same ward as Mason..
For the majority of 2021, Masons imune system was weak to non-existant. His White blood cell count has been so low during chemotherapy that he was regularly neutropenic. Nearly every round of chemo, he contracted rhinovirus (common cold) and suffered badly. As a family we have been ruthlessly tested for covid throughout, and, as a result, from the tens of tests undertaken, none have returned positive. Perhaps we were just all very lucky?
The ‘one parent policy’ posed a significant detriment to our wellbeing & ability to support Mason. It is cruel & unnecessary. Both parents should be able to support their child at a time when they need them the most.
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