Vicki, Izabela and I did whatever we could to help Margot settle back into hospital life on Robin Ward. We received many extremely generous special deliveries from friends old and new, packed with all sorts of childrens books and toys, which helped keep Margot occupied during her “up times”.
But nothing could prepare Margot for what was to follow and it wasn’t long before the nasty side effects of all the extremely toxic chemotherapy treatment kicked in…
17 February 2014: Day -4
05:30 Margot begins the day as she left off. She really is good fun to be with.
06:45 Izabela arrives to swap with me, as per our rota, now minus the shellack nail varnish. Margot’s face lights up when she realises her BFF “Baba” has arrived. She eagerly waves me goodbye. As does Margot !
14:15 the new chemo drugs are administered over the course of an hour. “Margot in very good shape today” texts Izabela. This is the drug that excretes through the skin – hence the recommended regular bathing routine.
19:28 Vicki & I arrive at GOSH after an afternoon of bowling with the boys and are relieved to see that as yet, there’s no sign of any skin irritation. Margot has been in the bath this afternoon and as we arrive is preparing to have another bath before bed. She is sporting a new NG tube which is a bit more dainty and looks far more comfortable than the ‘skipping rope’ that was installed by Kingston Hospital a few days ago.
I assemble the new kitchen which has been thoroughly sterilised at home. Margot loves it.
Margot gets straight to work making tea and cooking on her new stove. It’s great to see her in such good form – fingers crossed she responds better to the new chemotherapy than the doctors have suggested.
18 February 2014: Day -3
08:34 Izabela text: Good morning. We have been awake since 5 am. Margot is really grumpy today. I think it’s the drugs taking effect. She will be on the next infusion for 8 hours – long day ahead.
Otherwise normal. Her skin is still normal – no rash.
The infusion begins at 09:00 so we are about to have a bath.
09:25 The 8 hour infusion has begun & Margot’s word for today is “no”.
12:35 The bad reactions have started.
Izabela says: “Margot is so poorly now; vomiting, shivering, her skin is bright red. She cried and cried. Now she is trying to get some sleep but it’s the most sad little face ever.”
13:15 Vicki arrives at GOSH.
13:35 I arrive at GOSH. What I find is in stark contrast to how Margot was last night. Margot is curled up in Vicki’s arms. The redness has subsided (piriton was administered) and they also slowed the rate of infusion which helped moderate how Margot felt. She is pale and clearly looks unwell.
The nurses are coming in more regularly now. I ask what else can be done to make her more comfortable and am told that there isn’t a great deal else to do; we just have to sit and wring our hands.
I ask how long this is likely to continue and am told by the nurse that this is likely to remain her condition for about a week. Ignorance is bliss.
The doctors will be visiting on ward round shortly, but apparently the nursing staff tell us that this is very much a “normal reaction” given Margot’s chemo protocol.
I’m finding my emotions yo-yo-ing all over again, which takes me by surprise, so I nip out for a sandwich and a coffee run to the cafe across the road. There I bump into Nick Gould (haematology consultant). He happens to ask how things are so I share.
Apparently the ATG is the primary culprit and he explains how the first dose tends to induce the worst reaction.
Let’s hope so.
Personally, I’m finding it very hard to witness Margot getting sick in order to get better. And I have reverted to type. Literally. Today’s situation reminds me why I began writing like this in the first place.
Izabela is exhausted. She was told to anticipate this last night so she didn’t sleep much. Vicki has tended to react better than me in these situations and is showing her resolve right now.
14:51 Temp 38.4C. Paracetamol was administered at noon today so next dose is due at 17:30-ish.
15:01 Margot drops off to sleep as the Nurses arrive to take a blood sample. The Dr has prescribed Pethadene which is because Margot is exhibiting signs of being in pain. It’s a short acting but effective drug. If Margot still doesn’t tolerate ATG then they may well try something else.
The nurse explains that Margot is experiencing a Cytochaianine storm. Margot’s cells and ATG cells bind together. Margot’s cells burst and send out chemical messages to all others seeking help to get rid of ATG. This is all part of the process of ridding Margot of her T cells (her immune system).
They will run the ATG slowly which should help Margot tolerate better.
Thyotipa is the drug that requires regular bathing. Margot has had two baths already today but the thought of waking her and putting her through a bath now doesn’t seem like a good idea.
15:30 Professor Veys and team arrive and repeat everything we have been told already. This is normal. Once the T cells are wiped out, the ATG doesn’t harm so much because there aren’t any more T cells remaining !
Professor Veys also suggests hydrocortizone steroids to help make Margot more comfortable. Apparently this helps with the temperature as well. Margot ought to be less affected tomorrow.
Bottom line: we just need to sit this out.
17:35 the hydrocortisone appears to have worked. Although clearly not herself, Margot is now up and about again, back at the kitchen stove.
17:52 Vicki & I leave GOSH to head home. 3hrs 30 minutes of infusion remaining.
20:36 Margot had a nap for an hour at 18:00. Then some water, yoghurt & a chat before settling down just now with some milk for her night time sleep. Still another 46 minutes on infusion to go.
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.