Yes yesterday marked six months since Vega was diagnosed with Leukaemia. Six months that have passed quickly in retrospect. Six months is just six months for someone of my age, but when you are three like Vega, then six months is quite a substantial part of your life. These six months should have been the time when Vega learned how to ride a scooter, made friends in Nursery and grew her hair as long as Rapunzel. The time seems even longer if you consider that it is almost half of Alys’ little life, who is known by all the nurses at the Marsden and at Kings but has not been to a playgroup in six months.
Yesterday was also a Marsden day and we got Vega’s beads of courage- she now has more than 400 beads. I counted this morning and the stock is impressive after these first six months. Not to forget that she only started collecting a month into treatment so quite a few went amiss in those first few weeks. Vega has 127 black beads for needle pokes, 92 white beads for chemo- that is 92 different doses of chemo. 71 lime green beads for neutropenia whenever we had an appointment in the hospital- we don’t count her neutropenia days at home. 12 Pale green beads for scans, x rays and echos, 12 red beads for transfusions, 10 tortoise beads for lumbar punctures and 39 yellow beads for hospital overnight stays. There are many more, for clinic visits, Physio and Dietitian appointments, medication and mobility challenges, hair loss… The amount is staggering and yet these only reflect part of her journey these last months because there are no beads for vomiting or feeling sick, for pain, for sleepless nights, for diarrhea, for missing out on learning to ride a scooter or going to nursery. We have another 22 months of treatment left. Many more beads to be collected…
Yesterday she had her second dose of Doxorubicin and Vincristine. Delayed Intensification is going ok so far, and we even managed to get through our week of steroid without any major hiccups. Vega’s appetite increased, which was good. Rather than being naughty and aggressive Vega was sad and depressed. The steroids gave her bad tummy pain and although I usually try to hold of with painkillers I did give her codeine for the pain three days in a row. She just seemed so miserable and sad that I thought if I could at least take that pain away she might feel a little bit more comfortable.
She was insanely tired this last week. I am talking so tired that she nearly dropped off to sleep mid conversation. She has pretty much spent the entire week in bed, not even interested in TV. I tried to leave the house at least once a day for little things like shopping or a walk in the park but 2 hours was her absolute maximum. She was in the buggy anyway but after a while she just asked to go home and go to bed. It fustrated me, of course, but I have begun trying to imagine how she must feel like. I guess it must be as if you had a stomach flu and a cold for the most of the last six months. You just feel drained and tired and want to be in bed, close your eyes and switch off until you feel better. I feel sorry for her, every day. So even though we are in London, summer holidays, the Olympics are on, so much to do… we can seriously not do it.
Today, two days after her last dose of steroids she is much better. I am wondering if the tiredness was also induced by the steroids. She is shaky today, her hands and legs in particular which is the ‘coming down’ from the steroids. A bit like an addict in rehab.
But her energy is much much better today! Vega, Lyra and Alys are actually playing today, whizzing around the flat, being vampires and fairies.
And if I have learned anything these last few months it is to take each day as it comes. One day she might just be in bed, and it is so hard to see that. But the next day she is up and about, happy. We will go on like this, for the next six months, 12 months, 22 months…