Yaser

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

January 17, 2018

An afternoon at Westminster: autologous stem cell transplant trials and The ‘Hidden’ Cancer report

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Stem cell APPG

Margot’s auntie Nadia & I spent a few hours at the Palace of Westminster this afternoon, initially attending the APPG (All Party Parliamentary Group) on Stem Cells, chaired by Mark Tami MP and courtesy of Anthony Nolan, where we heard about autologous (i.e. using the patient’s own cells) stem cell transplant trials for MS and Crohn’s disease patients. Two patients spoke of their transplant experiences; I found the recounting of both patient stories remarkable to hear, because there were none of the painful & complicated isues that we witness Margot suffer – underscoring the benefits of autologous stem cell transplants, in comparison with allogeneic stem cell transplants, which use stem cells from a donor.

AAE56D3D-4D49-4DFD-AED0-26D03C318B87Later, we joined the Bloodwise APPG on Blood Cancer, a relatively new APPG (formed in Summer 2016), which today published it’s first report: The ‘HIDDEN’ CANCER – The need to improve blood cancer care

48380D30-0F52-4CA6-8E76-AC224CA00F2BThe report focusses on five of the six priority areas identified in the 2015 Cancer Strategy (Achieving World Class Cancer Outcomes: A strategy for England 2015-2020).

One of the key points that was covered by the media today was the need for early diagnosis. First thing this morning, I happened to watch Henry Smith MP, chair of the APPG on Blood Cancer, being interviewed on Sky News, telling the story of how his mother was only diagnosed with leukaemia a few hours before she passed away.

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It was a packed room at the APPG on blood cancer

Our family had a similar experience, in that my daughter, Margot wasn’t given a blood test, nor did anyone even suggest Margot have a blood test, in spite of a few visits to our local GP and then having been admitted to Kingston hospital twice (and being kept overnight in one instance), with what we were told was a viral induced wheeze.

Consequently Margot wasn’t diagnosed until her blood cancer was at a very advanced stage, at which time she was straightaway admitted to the paediatric intensive care unit at Great Ormond Street Hospital, in a “perilous” condition.

Below is an extract from a talk I gave at my first NHS Blood and Transplant blood donor recognition ceremony talk, in June 2015:

IMG_3146It might sound silly to say it, but at the time, we really didn’t know that Margot was THAT unwell. Margot had always been pale skinned but we had sensed for a while that something wasn’t quite right. Vicki had grown increasingly concerned about the bruises showing on Margot’s body (mainly on her legs).

Shortly before her diagnosis, we were being told that Margot had a viral induced wheeze and she had even been kept overnight at our local hospital before being discharged to come home. In retrospect, the astonishing thing for us is that having flagged these concerns with several doctors, not one of them detected what the problem was, or even suggested a blood test.

For the avoidance of doubt, we don’t blame anyone – that’s not how we feel. Margot was red headed & fair skinned and at that age when youngsters start to move around a lot – so red hair, pale skin & bruises on a toddler provided a cover under which the leukaemia was lurking.

So, we only discovered that Margot had leukaemia when the disease was at an advanced stage.

Please click this link to read my entire talk and to see all the associated slides.

We welcome this first report of the APPG on Blood Cancer and their aims to increase awareness and improve blood cancer care. For more on the ‘Hidden Cancer’ report, please visit: https://bloodwise.org.uk/actions/campaign/partnerships/appg

Team Margot
Together, saving lives

Posted in: Journal