July 16, 2017

“… provided I’m fit and healthy.”

By
Margot, at Great Ormond Street Hospital

Margot, at Great Ormond Street Hospital

This is something I tend to catch myself saying, in the context of my own life: I want to live a long life, provided I’m fit and healthy.

And so it stands to reason that a blood cancer patient would of course have the same wishes, post bone marrow transplant.

I began thinking and talking about “complication free” survival during Margot’s treatment at Great Ormond Street Hospital in early 2014 and first wrote about this when penning an anonymous missive to Margot’s donor in April that year (pasted below), following her transplant.

As Margot’s father, it concerned me that all the medical treatment and attention was focussed upon what the doctors referred to as “disease free survival” – this is obviously a vital objective! – however, the range of likely complications that Margot faced and which all bone marrow patients must contend with are varied and largely unpredictable.

Some complications arise as a result of chemotherapy treatment (which is so toxic it would be totally unacceptable, were it not for the alternative !) whilst other issues occur because of transplant related GVHD (Graft Versus Host Disease), where the patient’s immune system doesn’t recognise the donor cells & vice versa & causing an adverse reaction. It’s a tricky balance, because for the transplant to succeed, a bit of “mild GVHD” is necessary to trigger the desired “Graft Versus Leukaemia”, however too much GVHD can cause serious complications and can be fatal.

Some complications present during the course of treatment and others only become evident post transplant. Often, these complications are chronic and never go away.

Georgina Haynes shares some of the complications involved with her transplant

Georgina Haynes shares some of the complications involved with her transplant

Hayley Leonard, lead CNS at Anthony Nolan

Hayley Leonard, lead CNS at Anthony Nolan

So it comes as no surprise that Anthony Nolan have already set up and are now developing a team of dedicated Clinical Nurse Specialists (CNS), who are determined to address the major gaps that exist in post transplant care. The CNS are trained to recognise and meet the patients needs and seek to provide the physical and psychological support needed by the patient and also their families.

This dedicated CNS role is so important, not least because the existing medical staff simply don’t have the time to properly perform this post transplant role.

A couple of weeks ago, Margot’s auntie Nadia & I were invited to a breakfast hosted by Anthony Nolan, where they talked about the role of the CNS in post transplant care.

with Kieran Franklin, who donated peripheral stem cells. At one point, I choked when talking to him - my emotions got the better of me. What touched me was the fact that he not only signed up to the register, but that he also made good on his commitment to donate, when the call came.

with Kieran Franklin, who donated peripheral stem cells. At one point, I choked when talking to him – my emotions got the better of me. What touched me was the fact that he not only signed up to the register, but that he also made good on his commitment to donate, when the call came.

Amongst the people who spoke that day was Georgina Haynes, a veterinary student who has been battling her blood cancer for a couple of years, having been diagnosed with acute lymphoblastic leukaemia, aged 23.

Georgina has experienced many post transplant complications and she gave a brutally honest and open account of her own story, touching upon both her mental and physical suffering, including chronic GVHD of the skin and eyes, which she chronicles in her blog: http://vetstudentinaspin.blogspot.co.uk/

Georgina’s talk touched a nerve with everyone in the room and it was a reminder for me that Margot was never able to really articulate how she felt during treatment.

We also heard from Georgina’s Clinical Nurse Specialist, Hayley Leonard, who was the very first to perform the dedicated post transplant CNS role for Anthony Nolan. Hayley has very kindly shared what she had to say here.

Olivia Coleman - Ambassador for AN

Actress, Olivia Coleman is an Ambassador for Anthony Nolan & she also spoke that morning

The title “Clinical Nurse Specialist” sounds very technical, but it was equally reassuring to learn about the very human approach which came across with what Hayley had to say. She emphasised the psychological & emotional support that the team seeks to provide, in addition to the physical. And it’s support not just for the patient, but also for their family too – which, as a family member (i.e. not the patient), I found encouraging.

with Georgina Haynes and Tony Hurran, both transplant recipients

with Georgina Haynes and Tony Hurran, both transplant recipients

I understand that there are only two other CNS performing a similar role within the NHS, based in both Manchester and Kings Hospitals.

Hayley explained that she has recently taken on the role of Lead Nurse at Anthony Nolan, heading up the team to set new standards, help improve the patient experience and address their needs – the aim being to enhance recovery and improve outcomes.

Amongst many others, I was also personally delighted to meet a peripheral stem cell donor, Kieran Franklin and also Tony & Beth Hurran (Tony is recovering from his stem cell transplant).

Thank you Anthony Nolan !

Team Margot
Together, saving lives

===

Our anonymous letter to Margot’s donor

To the gentleman that selflessly and benevolently donated his bone marrow to someone else in their time of need…

You were there for a little girl who was quite suddenly taken ill and found herself in desperate need of a stem cell donor match, in order to stand the best chances of beating her blood cancer.

You are our hero.

We feel this way in spite of knowing very little about you. However, that you thought to take the time to register as a potential stem cell donor and made good on your commitment when our call came, speaks volumes for who you are as a human being.

Today, tests show that our little girl has 100% of your stem cells in her bone marrow, which means the bone marrow transplant was successful.

We are told that she is now ‘disease free’ and are looking forward to her coming home soon, making a full recovery and living a healthy and complication free life hereafter.

You have given her a second chance at life; we are all unspeakably grateful to you for this miraculous gift and one day, we very much hope to meet you.

Yours in admiration, from the fortunate and humbled parents, brothers, cousins, uncles and aunts, grandparents, great grandparents and friends:

Thank you. 

 

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

Posted in: Journal