On 10 April 2014, Margot was finally discharged from Robin Ward at Great Ormond Street Hospital (GOSH), after 8 weeks in isolation.
At the time, we believed that her bone marrow transplant had been successful and for all of us, Margot’s coming home marked the beginning of the rest of her life. After such a turbulent few months and some very uncertain times, we now felt blessed at the prospect that Margot would have a second chance at life and we hoped for her to enjoy a complication free existence and ultimately, “disease free survival”.
We knew (and still know) very little about Margot’s donor. The donor / patient relationship remains anonymous for at least two years after transplant and longer still, if either or both parties wish it to remain that way. However, we were permitted to write a letter for onward transmission to Margot’s donor. We felt this was important and really wanted to take the opportunity to somehow convey how grateful we were to the donor for having given Margot a second chance at life. A priceless gift.
How do you thank someone who has saved your life or in our case, the life of a loved one ?
It was a struggle to know how and what to write. I found it difficult to find the right words and there were many versions and drafts written over several weeks. The letter was incredibly emotional to write, much as this blog post was today.
To compound matters, there were strict guidelines to adhere to; we were warned that the letter would be carefully scrutinised before being passed on and if we revealed anything personal within the contents, which might risk revealing Margot’s identity to the donor, then it would either be redacted from the letter or the letter would not be passed on to the donor at all.
Finally, on the day before she was discharged from hospital to come home, we requested that Margot’s donor be sent the following letter. It would go via GOSH (the transplant centre), on to Anthony Nolan (the UK registry), via the German registry and finally through DKMS (the German donor centre) and on to the donor himself.
One day, we hope to meet him:
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:
Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015), Humphrey (2017) & Margot (2012-2014)
Team Margot’s mission
To help save and improve lives by educating, inspiring and motivating people, especially from ethnically diverse communities, to register as blood, organ, stem cell and bone marrow donors and to provide a range of support to families caring for child cancer patients.
Team Margot also provides secretariat support to the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion.