Day in the Life – Bloods

Once a week a community nurse comes to our house to take some blood from Hugo via his bumpy. This blood is then sent to the lab and later that day, or the following day, we get a phone call with the results, which I write in our blue folder.

It is these results that determine the dosage of his chemo for the following week. The idea is to keep his bloods within a certain range so that his bone marrow learns how to work properly again. The results would also alert his team to any potential problems, from possible relapse to low iron levels. As well as the standard full blood count, Hugo’s liver function, ferritin levels, vitamin D levels and chemotherapy absorption are also regularly tested.

The first step in the weekly bloods is putting the numbing cream on with a clear sticker over the top.

This has to go on an hour before the nurse is due to arrive. This allows pain free access to bumpy. Bumpy is actually a port-a-cath or central line, which sits just under Hugo’s skin and was inserted shortly after he was diagnosed. It links up to a large vein near his heart allowing for direct access and easier blood taking.

When the nurse arrives she prepares her tray full of syringes, flushes, antiseptic, blood bottles etc. Then Hugo strips off his top layer, we remove the cream and the nurse gets to work. Hugo likes to sit on my or his dad’s lap for this part and over time we have developed the best position for giving the nurse good access and also for good blood flow. She cleans the area, inserts wiggly, flushes the line to clean it, gets the blood, flushes again to clean and prevent blood clots, then takes wiggly out.

Wiggly is a small needle with a tube attached to it. Once in place it can be used to take blood, as in this case, and also to give blood, platelets and chemotherapy. Sometimes wiggly gets left in, if we have a hospital appointment for chemotherapy the next day for example, but most of the time it gets removed after blood has been taken.

Hugo is generally very good and doesn’t make a fuss. Sometimes I think he’s just not in the mood for it and gets a bit fidgety or uncooperative, but who can blame him really. The worst bit for him is the antiseptic wipe because it’s cold on his skin. Of course sometimes wiggly doesn’t work and Hugo has to flap his arms or change position while we say ‘come on the good stuff’. On occasions the nurse has had to take it out and start again, or we’ve ended up at our local hospital for some wiggly unblocker. If all is straight forward, the visits take about 30 minutes.

Every so often visits are more frequent than once a week. Sometimes the blood can clot between our house and the lab so the nurse needs to come back and do them again. There have been times when Hugo has been poorly, or one or other of the results seems strange, and they need to be done again a day or two later. In-between visits we are kept busy completing repeat prescription forms and trips to the doctors and chemist to keep our box of supplies full.

Weekly bloods have become part of our routine now, another part of his treatment that Hugo just accepts. The team of nurses have become familiar and friendly faces on this journey with their kind understanding for me and stickers for Hugo. It’s another aspect of our life we have learnt to work around, to squeeze in and give importance to. We have to remember them when it comes to holidays or after school activities. It’s not a huge inconvenience, but it is every single week and I’m pretty sure there are other things we would all rather be doing!

It will be nice when they are no longer part of our life, but the thought is also scary. These bloods and his general well being are all we have to go on to know if the chemotherapy is working, that nothing is wrong, that it’s not coming back. It’s difficult not too obsess slightly over them. I spend far too much time looking through the results in our blue folder, trying to see patterns, to be on the look out for anything strange, to be prepared for an infection, or worse. Generally there is no pattern, other than the week after steroids, when his counts always go up (which is perfectly normal). The thought of not having that safety net is a little concerning, but that’s my worry to live with, I know Hugo will just be pleased not to be jabbed with a needle every week!