On 4 April 2014, Margot was ‘Day 42’ post BMT (Bone Marrow Transplant). This was supposed to be the day that Margot came home, however it began at 07:26 with Vicki calling to say that Margot’s temperature was 38.4C. Tests were being conducted to establish cause and treatment.

It was a timely reminder of how fragile Margot’s condition still was (her immune system wouldn’t be fully functioning for several months yet) and how careful we needed to be.

At the time, this was VERY frustrating news.

We didn’t yet know the cause of the temperature spike and it was still unclear what the correct medical response to this situation should be. Regardless, we needed to brace ourselves for at least a few more days…

New plan: I go in to GOSH to relieve Vicki and stay the weekend.

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I wrote at the time:

On balance, when you consider what Margot has been through, this is a high class problem for us to deal with…

That’s me trying to be positive about this news, but I must confess that it is all a bit upsetting.

Rufus had a little cry just now, but I’m trying to work out whether not having ‘Margot’s iPad’ repurposed again for Angry Birds might have had something to do with it !

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09:13 temperature back down to normal, even though Margot is yet to have any antibiotics.

09:21 Just took blood cultures. Waiting for antibiotics. Interesting that temp is normal again without treatment. Got to be a good sign.

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13:20 I arrive at GOSH & go for a coffee for Vicki & I. In the cafe I bump into Kirsty (psychologist) and later Dr Ancliff our haematology consultant. He comment that Margot is probably in for another 3-4 days, given what I tell him.

13:42 Margot is still asleep.

Professor Amrolia & Dr Louis give us the Friday Ward Round talk:

It’s probably viral but 5 days of antibiotics & Margot is to remain at GOSH. If blood cultures are positive then 10 days stay required. Margot’s CRP is 20. Normally between 5 – 20 but can go up to 100+.

Big picture is otherwise good. No rush to take off her Cyclosporin just yet (no real signs of GVHD yet). Probably leave her on this drug for 3 months.

Margot has responded very well and Amrolia thinks she will do well. She went in to BMT as MRD negative and she coped very well. We are now through the time when Margot was at highest risk.

14:02 Call from Kingston hospital confirms that both Oscar & Rufus’ results are negative [they have both been unwell, so we had their blood tested for any nasties prior to Margot’s return home]

14:17 Vicki leaves GOSH but not before telling me off for turning up at the hospital looking like I’m wearing my pyjamas !

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Lunch strategy: with In the Night Garden characters to provide a distraction (Izabela says it helps distract Margot so that she picks at her food herself – seems to be working)

14:34 Margot wakes; mental readjustment more for me than Margot who remains oblivious to where and why she’s at GOSH. There are a few “Mama” cries & then after singing a song the smiles return.

In a way, it’s going to be good for me to do the meds & feeds over the next couple of days. See what I did there ?

Margot has her Obs and I use one of the two new thermometers for the first time: 37.1C.

Now for lunch.

15:33 pipacillin and vitamin K administered via hickman. Pip to be administered three times a day from this morning (owing to her temperature spike) – first dose at 10:00 today. Amacasin also once a day (administered this morning) – another type of broad spectrum antibiotic.

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Administering Meds for the first time

Ondansitron (anti sickness)

Margot’s meds chart

19:20 This is my first time and I go through this with Nurse Georgie.

Margot doesn’t really have that many meds, so it’s not too difficult – morning and afternoon only really (once we get home).

Vicki administered all the meds on previous home stays, but now I need to get the hang of this.

It seems that the trick is all in the preparation.

ciclosporin : this is the immuno suppressant drug, also responsible for the black eyebrows and hairy lip

up close when the light catches her lip, you can see that Margot has grown a very fine down of moustache – this is the Ciclosporin; the hair will fall out once Margot comes off this drug

Penicillin : requires crushing…

before crush

crushed & ready to dilute

including pre-primed flush syringe, all ready! Looks more complicated than it really is… (he says!)

Yaser

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015), Humphrey (2017) & Margot (2012-2014)