When we think about a child having cancer, we focus our thoughts on the disease being the bad bit… and isn’t it a good thing that they can access potentially life-saving treatment. But during this process, what you are often relentlessly managing, is the (sometimes quite serious) complications of actually receiving the treatment.
The third part of this saga is that Joshua has regularly had high temperatures, which is probably due to an infected port. But either way, a temperature of 38 degrees, means that we immediately go trotting off to A&E and will then be living in hospital for a minimum of 48hrs.
As soon as possible, he gets IV antibiotics, despite it not always being clear what the cause of his infection is. This is because even if it is a virus, he is at risk of complications, like secondary bacterial infections (pneumonia).
We have now surpassed the hat trick of all school holidays spent in hospital – Christmas, Easter, February half-term, and recently the May half-term. (But we had such plans for our lounge-based activities!)
In February alone, we had three admissions in what was supposed to be an easier few months of treatment.
Strangely, he is mostly not that unwell in himself with no outward sign of illness (snotty nose, cough etc..) The nurses will take blood samples, which get cultured in a lab and these consistently reveal the presence of a bacteria. When they know it’s staphylococcus, they can then tailor which antibiotics to give.
After much musing (because it keeps happening repeatedly) the consultants have concluded that somewhere inside the port it is probably a bit gummed up with the presence of bacteria that when you are not really ill, your body can tolerate. When he gets neutropenic (*where he has low levels of white blood cells, which makes him very vulnerable to infection*) the presence of this bacteria can cause systemic infection in his body. Hence the spike in temperature. I’m sure our consultant would raise her eyebrows at my simplistic scientific overview of all this, but it’s the best I can do without making it confusing!
The consequence of all this is relentless stays in hospital, which is bad at the best of times. And it is not the best of times in Covid-saturated-Britain.
The long-term solution is to have his port removed in surgery, and a new one put in at a later date. The short-term solution, is to do line-locks. This is where they send him home, but leave a small dose of antibiotic sitting in the port (instead of flushing it clear with saline). This means that once we’ve returned home, the CLIC-Sargent nurse will come out to us every day for two weeks, to refresh the antibiotic.
As you can imagine, Joshua is overjoyed about this; when Jaydene arrives, he screams in her face, shouts “oh no.. not you” and runs off…