For Margot, there was a huge amount of energy directed towards finding her a matching donor – to have a bone marrow transplant, first you need a matching donor – but once one was found, our attentions shifted back to caring for Margot as we began the next stage of treatment.
What struck me back then was how tenuous this whole process is; the news confirming Margot’s donor match was, for me, a bit like being on a long and arduous journey, when all of a sudden, you feel a wind at your back – it doesn’t take the miles away, but it does allow for a little smile and the possibility of some positive momentum.
This time last year we were so full of hope. And we needed that extra bit of positivity to get us through the bad days and to relish & celebrate the good.
Because, finding a matching donor is just the end of the beginning…
16 February 2014: Day -5
Another full day and I’ve only just sat down to write this.
Highlights from today: Margot remains in good form, although the chemo is affecting her bowel movents and it’s a battle keeping on top of it. The concern is that her bottom gets very sore and we went through a period of one hour today when I had to change her nappy 8 times…
The chemotherapy is also making her more tired and today Margot slept for around an hour longer than yesterday during the day.
Tomorrow brings a fresh challenge; the existing chemotherapy continues but there’s more in addition; apparently one of them excretes through the pores in the skin and we can expect a bright red rash all over Margot’s body. The way to try and counteract is by bathing – at least twice a day, but probably more than 4 times to try and avoid the nastiness.
Dr Juliana remarked on how well Margot appears to be doing and explained that adults going through the exact same chemo protocol as Margot usually really struggle and suffer with this regime.
I was supposed to be going home tonight but Izabela turned up at GOSH wearing shellack nail varnish. Apparently this is not allowed because nail varnish carries bacteria. As of today, Margot is Neutropenic so we are in very sensitive territory. So the plan is for the shellack to be removed (apparently it’s not a simple process you can do at home) & then we swap again tomorrow.
Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015), Humphrey (2017) & Margot (2012-2014)
Team Margot’s mission
To help save and improve lives by educating, inspiring and motivating people, especially from ethnically diverse communities, to register as blood, organ, stem cell and bone marrow donors and to provide a range of support to families caring for child cancer patients.
Team Margot also provides secretariat support to the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion.