After a suitable donor match for Margot was eventually found, her bone marrow transplant (BMT) was scheduled for 21 February.
So this time last year, we were arriving back at Great Ormond Street Hospital to prepare Margot for her transplant. This is called “pre-BMT conditioning” which involves injecting the patient with a “lethal dose” of chemotherapy so as to destroy their existing bone marrow and to make space for the donors marrow.
We checked into the BMT ward (Robin Ward), where Margot was to spend the next 9 weeks in isolation on 13 February, pre-BMT conditioning began the following day, which is called “Day -7” (transplant day being “Day Zero”).
Isolation is necessary for the patient because without any bone marrow function, the body has no immune system. As such, isolation doesn’t just mean ‘no visitors’ but also that every member of staff must wash their hands thoroughly and don a new apron before entering the room. Plus there can be three nominated carers only.
Below is an excerpt from my private blog on Day -7 last year:
Robin Ward is very different from what we have experienced at PICU and Elephant Ward before.
Margot’s room was “level 3 cleaned” before we arrived, which apparently means it is completely sterile. There’s a holding chamber between the ward corridor and the room itself which has a ceiling mounted air filter; this is a chamber where you need to wait a mandatory 20 seconds before passing through and into the room (the doors are locked and won’t let you pass through until a red light stops flashing) and basically during this time you remove any outdoor clothing / don a plastic apron and wash hands thoroughly. Watches must be removed, any jewellery and this includes Team Margot bands ! Vicki isn’t allowed nail varnished fingers (apparently the same applies to me !).
For ease of communication, there’s an intercom system enabling the staff outside the room to talk to us inside the room as we look at one another through a glass wall. I’m reminded of the visitor areas in high security prisons that you see in American films where prisoners talk to visitors via a telephone intercom system, separated by a thick pane of glass.
Within the room is another ceiling mounted air filter which runs constantly and a unit that constantly circulates filtered air around, so that no airborne germs can enter the room.
A facilities chap arrives and fits fresh curtains over the windows (both external and internal facing). They’re quite effective ‘black out’ curtains and they come in handy when Margot naps in the afternoon.
The net effect of all this is that today has been an energy sapping experience and the overriding sensation is that we are occupying quite a tiring environment. The constant hum in the room and the slight chill, combined with the fact that for parts of the day I wasn’t entirely sure what time it was (no watch, no light, I’m tired, haven’t drunk enough water and the air filter is drying me out etc) and that we cannot move very far / around much at all (it’s not a big room but there is an ensuite bathroom). It all feels rather odd and feels a bit like being on a long haul flight.
Of course, all this means that the environment in Robin Ward is also far less sociable. Parents are, for the vast majority of the time with their children inside the rooms and are not standing in the ward corridors having a chat over a coffee whilst the children scoot around / lose themselves in the play rooms. After two weeks at home with the family, Robin Ward is in stark contrast and a bit of a shock to the system.
Only three nominated people are allowed into the room: Vicki, me and Izabela. Strict rules apply, which of course means that we are not allowed ANY visitors and that includes people like the music therapist we have had coming to the house for Margot.
Margot is in great form – she doesn’t even know she’s ill ! But we are acutely aware of the challenge ahead of us – it’ll be difficult keeping her in the room without her getting frustrated and yet the nurse’s advice is to try and keep her active and stimulated – after 35 years on the ward, she believes that they see better recovery from children who are active. After telling us this, the nurse added “but it is hard work” !
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.