October 24, 2014

The spirit is willing …

By
Margot painting last night

Margot painting last night

It stands to reason that as the percentage of donor cells in Margot’s blood falls, the white cell count would rise again given the lack of ‘opposition’ and this was the ominous revelation from the full blood count conducted yesterday. This showed a proportionately marked rise in Margot’s white cell count for the first time in several weeks.

We stopped giving Margot Dex steroids following a short 5 day course earlier this week. The last time Margot received Dex steroids we noted a suppression of her white cell count two days after the five day course of Dex was complete. By that reckoning, IF there is a similar effect this time around, we ought to see a reduction in Margot’s white cell count on Monday. Alternatively, if the rise in white cells continues at the current rate, then by Monday we may well see a spiralling of the white cell count.

Sadly, this is all rather academic now.

Over the last 24 hours, Margot has needed much more intensive pain relief.

We know that she is very likely to be experiencing bone pain and have been treating this for weeks now with various drug cocktails, but increasingly she is complaining in particular about her knee hurting.

We are also back on ‘temperature watch’ – again, the Dex will have helped dampen down the fevers and since it stopped, we are once again regularly using Ibuprofen and paracetamol to try and control her high temperatures.

In spite of being weak and having very low energy levels, when awake Margot’s spirit is willing and she still insists on sitting up and playing / painting, watching her Peppa Pig & Singing Hands programmes and having the Blue Kangaroo books read to her.

We love you Margot.

x

24 October 2014

Thank you to our friend & wonderful Team Margot Ambassador, Harley Bird, the young actress who is also known as the voice of Peppa Pig. Margot is a huge fan. x

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

Posted in: Journal