Thank you for taking the time to visit my JustGiving page.

MARGOT'S CONDITION

Margot was diagnosed with Leukaemia on 7 October 2013, aged almost 14 months old.

Margot has an extremely rare form of Leukemia, which has dual lineage – both Acute Lymphoblastic Leukemia (ALL) and Acute Myeloid Leukemia (AML). The consultant haematologist tells us that he has only seen 3 such cases in the last 10 years.

Margot is being cared for by Great Ormond Street Hospital (GOSH) and initially spent 10 days in the Paediatric Intensive Care Unit (PICU), and then transferred to Elephant Ward on 17.10.13.

On arrival at GOSH 01:00 on 08.10.13 Margot's blood numbers were shared with us - they were dreadful and all wrong :

388 white cell count (normally 4-10)
16 Platelet count (normally 150-400)
4.1 Haemoglobin (normally 12-17)

Great Ormond Street Hospital is the UK's largest paediatric centre for many services. The hospital is renowned for being one of the best facilities of it's kind anywhere in the world.

We take comfort from the fact that this is one of the very best places for Margot to be receiving specialist care and medical attention and would be delighted if you were to donate in support of Great Ormond Street Hospital.

===

WHAT HAPPENED ?

Our daughter Margot has been pale for some time and we have sensed for a while that something wasn't quite right. Vicki has been increasingly concerned about the bruises on Margot's body (mainly on her legs), to the extent that during the summer we were questioning ourselves as to whether we were holding her incorrectly or too roughly - she is our third child, so initially I was pretty defensive about this !

The astonishing thing for us is that having flagged this issue with several doctors, not one of them detected what the problem was, or even suggested a blood test. Margot is red headed & fair skinned, 14 months old and crawling around - so pale skin and bruises for a clumsy crawling infant has provided a perfect cover under which leukaemia has been lurking.

Margot bumped her head on the floor in August while we were on holiday in America and her forehead flared up, so we took her to hospital in Virginia and a consultant (an older gentleman) inspected her and declared Margot OK; moreover, under direct and specific questioning from Vicki he waved away any concern that we might have had about something more sinister causing her bruises.

A week later we were in Chicago for a family reunion. Many of our family are doctors however when asked about the bruising they all said much the same thing - Margot is just bruising because she is crawling around. Don't worry about it. It's normal - but if you're concerned, have her checked out when you get back.

In September Margot had two separate hospital admissions (one involved an overnight stay) at Kingston hospital owing to what was flagged as a viral induced wheeze. More doctors see Margot. Again, Vicki flags the bruising concern. Again, no one took the matter further or suggested a blood test.

On Saturday 5 October 2013, a family friend popped in our home and on seeing Margot immediately declared "she really doesn't look well at all". That comment caused me to stop and look at her again. Margot was behaving as normal, but she did look pale. Kingston hospital had said she was not well, but that she was well enough to go home, so we knew she wasn't 100% fit.

An anaesthetist friend (who is a consultant) was staying with us at the time (more discussion around this topic) and he suggested that we bypass the GP and go straight to see a paediatrician.

On the morning of Monday 7 October 2013  Margot awoke early at 5:30am and vomited. She was seen by a paediatrician that day and was admitted to Chelsea & Westminster hospital with suspected Wilms - a tumour / massing on kidneys. The ultrasound scan showed that there was no massing and that Margot's kidneys, spleen etc were all clear - cue huge relief for us both; maybe she's just anaemic ?

However, later blood tests showed cause for concern and long story short, Margot was diagnosed with leukaemia. She has a rare form which has both acute lymphoblastic leukaemia (ALL) and acute myeloid leukaemia (AML), so her situation is more complex than the vast majority of cases. The haematologist at Great Ormond Street intensive Care Unit says this is one of only 3 such cases he has seen in 10 years.

Margot started chemotherapy on Tuesday 8 October 2013 and thus far she has responded well. We are highly likely to go down the marrow transplant route, but frankly, given the fact that Margot is on life support in intensive care, they only look ahead one hour at a time.

It is worth stating here for the avoidance of doubt that Vicki & I don't blame anyone, but our story serves to underscore the fact that there appears to be a real problem and a lack of awareness, even amongst the medical fraternity.  Once you are in the system, the NHS can work wonders but getting through the front door…

Apparently, our story of 'clumsy discovery' is really very similar to the story told by many other leukemia patients. In fact the team at GOSH say that often it is the persistence of the parents that pays off - parents know their children best !

THANK YOU for your support.

Yaser & Vicki

x