Following Mason's Hickman line installation, we had started to adjust to the fact he would shortly receive chemotherapy, and as referred to in our previous post, the same applies when we say the “first time is always the worst” and quite possibly the most memorable. Mason actually started chemo prior to diagnosis – this is a thing. The diagnosis was not straightforward for him/us, requiring multiple biopsies and medical reviews over an 8 week period, and as a result, treatment was started with the recommendation that taking action was better than prolonging.
I think, starting chemo is quite a hard milestone, and by that, I mean the physical changes we all know are typically associated with this and are not nice to see. Mason had already undergone a busy period of testing, but at the end of each day, we would get him back, in his normal cheeky self. A quick google search and you have nice long lists of all the side effects of these meds, and it’s tough to not let these play on your mind. In his short life of just 14 months, Mason has not been a sicky child, or much of a whinger, by letting him follow this plan it felt as if we were giving consent to make him poorly. But…. he has an aggressive cancer growing inside him, it is literally turning soft tissue into tumor and spreading fairly fast, chemo is the gun that we’re bringing to this knife fight – it has to be some nasty shit to make a dent. Side effects are not a bad trade-off.
He would start on a mix of doxorubicin and ifosfamide. Given via IV infusion over the course of 96hrs with Mesna which helps protect his bladder and prevent irritation and bleeding. The presumption of attending day sessions for treatment with him was off the table, in fact, they were never a consideration as he would require a continuous infusion.
This initial dose hit Mason hard, on the first day he was physically sick, turned quite pale, struggled to stand up, and couldn’t focus his vision. We have started down the path of no return, just second-guessing how best we can support him through his frustrations and soaking up the torment. One thing that we both kept reiterating was that at least he would most likely never ever remember any of this.
Writing this retrospectively, we can say that he reacted a little better to the majority of rounds that followed.
Four days is a fair time for anyone to be hooked up to machines, especially for someone who has just found their legs and wants to explore. We have had to be extremely careful that he doesn’t pull or twist his lines too much, but he manages to find a way! The infusion pumps have a distinct, tone that sounds every time they detect pressure fluctuation in the line – it’s a safety mechanism, it’s a good thing (honestly) nevertheless one which is fucking soul-destroying to repeatedly listen to! And, once they’re tripped, they continue until staff resolve and reset the unit. Mason rolls over and pulls lines taught – machine beeps, twisted lines – machine beeps, sneezes or cries – machine beeps, I lift him up for a hug – machine beeps, infusion coming to an end – machine beeps, infusion actually ends – machine beeps….you get the picture. [If you’re reading this and in a similar position, and these brew hatred in your veins….you’re not alone]
So, a nice placid, well-behaved toddler is what we’re looking for here….cue the art of distraction! Limited on space, we would try to entertain him in his cot-bed whilst managing a plethora of nappy changes, it’s another level of ‘character building’. Fortunately for us, Mason was quite content watching the Bee movie on Netflix on repeat, like 50+ times easy, he just loves it! Besides screen time, the play therapist on the ward helped by introducing him to lots of different toys & baby puzzles which kept him busy and allowed us to grab a coffee, and when he’s done that, we play a game of ‘Mason throw it on the floor and Mum or Dad pick it up’.
Due to the increase in fluids through Mason's lines, it means he produces these ‘heavy-weight nappies approx. every two hours, over the treatment period this has been as much as 50 nappies. Each nappy is logged by us then weighed by staff for fluid in/out analysis. It doesn’t sound much, but after fifteen nappies’ at 2am it's literally taking the piss. We found that being able to log his fluids efficiently helped both us and staff, we mocked up a template and printed off several copies so that we had something ready to hand. It worked better than jotting numbers down on scraps of paper and we found any little wins throughout the day made things just a little more manageable.
There is a moment, upon which, the first bag of chemo is initiated into his line, and you think ‘what the hell is going on here’….I think the important thing to focus on is the fact the cancer would be reacting the same way.
