January 22, 2017

A moment of reflection

By

donormplateletsThank you NHS Blood & Transplant for inviting me to speak at your Recognition Ceremony on Friday, to all the fabulous blood and platelet donors receiving their awards for 100x blood donations & 250x platelet donations.

By addressing them, I feel as though I have been given an opportunity to try and at least go some way towards expressing my gratitude, and my wife Vicki’s gratitude & thanks to all the fantastic people who stepped up and provided for us, when we were in our time of need.

And I daresay that I am also speaking on behalf of all our family and loved ones, not to mention all the other patients out there who receive blood, and their families too – because, of course, the patient and the patient’s family don’t ever get to meet their benevolent & selfless blood & platelet donors.

So this opportunity is as close as we’re going to get to saying “thank you”.

mblood2And because the donors themselves don’t meet the patients to whom they donate blood, I hope those in the room yesterday found something in my daughter’s story that helps them relate to some of the desperate circumstances and situations that people find themselves in, when they need blood.

During the year following her diagnosis, Margot needed many regular red blood donations and platelet donations to keep her alive and clinically well. I can’t tell you exactly how many she needed, but it was a lot.

The reason why, in our case, we feel so unspeakably grateful to blood & platelet donors (and of course to Margot’s stem cell donor too), is that they helped give us the precious gift of time with our daughter and the gift of hope. Time and hope that we would never have enjoyed, were it not for their donations.

And during that time, Margot grew, she developed and she blossomed from being an infant, to a toddler and for 12 months longer than she might otherwise have, were it not for the benevolence & selflessness of donors.

So, on behalf of all patients & their families #THANKYOU to all the wonderful donors !

Team Margot
Together, saving lives

p.s. the beady-eyed amongst you will note that in one photo, Margot is receiving “Type O” Red Cells, yet in the other photo, she is receiving “Type A” platelets. This is because Margot’s blood was “Type O”, whereas her stem cell donor’s blood type was “Type A”. Consequently, post transplant she received “Type A” platelets !
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The talks that I give always leave me reflecting on Margot’s experience post blood cancer diagnosis, and consequently I revisited my private blog  & thought I’d share the following post and photographs, which was written on 5 October 2014, almost a year after Margot’s diagnosis and three weeks before she passed away.

“I can’t believe it’s been a year”

5 October 2014

10:27 and all well this morning.

We have had a slow ‘Sunday start’ and have been looking back at video footage over the last year (as I take the time to safeguard & back up footage) and Vicki remarks that she cannot believe how it’s been a year and moreover, when she tries to think of what else has happened over the last 12 months, it’s difficult to remember much else, other than how Margot’s illness has dominated our lives.

Here are a few random snaps over the course of the last 12 months…

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during the 8 weeks of isolation in Robin ward

during the 8 weeks of isolation in Robin ward

Dex steroid means rabid hunger and erratic behaviour

Dex steroid means rabid hunger and erratic behaviour

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precautionary CT Scan, post bump on head

precautionary CT Scan, post bump on head

ciclosporin side effect: orangutan hair growth on back & shoulders

ciclosporin side effect: orangutan hair growth on back & shoulders

Bath time with Rufus

Bath time with Rufus

 

As she continues to settle back into our home environment, Margot's character & personality continues to shine through, prompted and egged on by her brothers

As she continues to settle back into our home environment, Margot’s character & personality continues to shine through, prompted and egged on by her brothers

Izabela text arrived with this photo: “but I don’t think one little sick is gonna break us !! :) ”

Izabela text arrived with this photo: “but I don’t think one little sick is gonna break us !! 🙂 ”

Lunch with Night Garden characters to provide a distraction (that's what Izabela says helps distract Margot so that she picks at her food herself - seems to be working)

Lunch with Night Garden characters to provide a distraction (that’s what Izabela says helps distract Margot so that she picks at her food herself – seems to be working)

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Gravity fed bolus of 50ml of milk courtesy of nurses Edil and Elizabeth

Gravity fed bolus of 50ml of milk courtesy of nurses Edil and Elizabeth

Hula Hoops are one of the few things Margot will eat

Hula Hoops are one of the few things Margot will eat

Not happy. Post heel-prick

Not happy. Post heel-prick

Margot showing how strong she is

Margot showing how strong she is

during transplant on 21 February 2014

during transplant on 21 February 2014

Margot needs to take this whole chemotherapy thing a bit more seriously...

Margot needs to take this whole chemotherapy thing a bit more seriously…

it's a balancing act

it’s a balancing act

Ward Fairy and liberal amounts of fairy dust (Margot LOVES fairy dust)

Ward Fairy and liberal amounts of fairy dust (Margot LOVES fairy dust)

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Hickman line installed

Hickman line installed

Team Margot christened by uncle Ivor & shown off during cinema trip

Team Margot christened by uncle Ivor & shown off during cinema trip

The next Dr Martini ?

The next Dr Martini ?

Oscar & Rufus's blood tested to see if they provide a tissue type match with Margot (1 in 4 chance). In the event, neither provide a match for Margot.

Oscar & Rufus’s blood tested to see if they provide a tissue type match with Margot (1 in 4 chance). In the event, neither provide a match for Margot.

Back onto oxygen temporarily

Back onto oxygen temporarily

Coming out of the coma after 9 days ...

Coming out of the coma after 9 days …

Oscar & Rufus visit PICU

Oscar & Rufus visit PICU

Morale booster: Bows go in after a hairwash

Morale booster: Bows go in after a hairwash

Vicki feeds Margot milk via her Naso Gastric tube in PICU

Vicki feeds Margot milk via her Naso Gastric tube in PICU

PICU operate literally on an hour to hour basis

PICU operate literally on an hour to hour basis

calm before the storm at PICU - shortly after we arrive at GOSH in the early hours of 8 October 2013

calm before the storm at the Paediatric Intensive Care Unit (PICU) – shortly after we arrive at GOSH in the early hours of 8 October 2013

7 October 2013: Vicki arrives back from the paediatrician & goes to pack a bag - Dr suspects Wilms disease and sends us straight to Chelsea & Westminster

7 October 2013: Vicki arrives back from the paediatrician & goes to pack a bag – Dr suspects Wilms disease and sends us straight to Chelsea & Westminster Hospital

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

Posted in: Journal