As the day of harvest arrived, I found myself feeling extremely anxious and unsettled.
Poor Margot was all over the place, sometimes very sick and other times up and about, full of energy & life. We had no way of knowing what was going to happen from one minute to the next.
However, what was also occupying my mind was the thought: “what if…?”
Margot had crossed the Rubicon – the lethal doses of chemotherapy had been administered a couple of days previously and now she needed to be rescued. And whilst we counted ourselves as being very fortunate to have found Margot a suitable donor, we needed him to actually donate and then to safely receive the donation in tact and in good time.
I found myself gripped with worry about what if the donor were to fall sick, have an unfortunate accident (or worse), or maybe simply change his mind. Stranger things have happened. And then the worry about whether there would be practical issues with transporting the bone marrow donation from somewhere in Germany to Great Ormond Street Hospital in London, on time.
Everything seemed so tenuous and there was little or no room for error.
It was a very emotional time.
Here’s what I wrote back then:
19 February 2014: Day -2
Sometime today, somewhere in Germany, a 22 year old male is preparing to be harvested of his bone marrow, inshallah.
It’s an entirely selfless and benevolent act. This young man doesn’t know who the recipient is and nor are we permitted to know the identity of Margot’s donor for a period of 2 years from now – and that of course assumes he is then agreeable to revealing his identity.
Whoever this young man is, he is my hero.
I wish him an easy harvest free of complications and a speedy return to fully replenished bone marrow and a pain free recovery.
07:55 Izabela text: Last night was ok. Margot woke every few hours for a drink or nappy change. She vomited once but nevertheless it was what I’d call a “normal” night.
We had a bath already and now we are playing. She is happy this morning but the same drugs as yesterday are currently being prepped for a 9am infusion.
12:41 Vicki text: Margot’s doing really well & enjoying her lunch. x
14:50 I arrive at GOSH and Margot is fast asleep. She is still hooked up to her infusion for a few more hours. Apparently she is in generally good spirits but is quieter than normal and not quite herself.
Margot’s appetite is not very good & she refuses to drink milk. She is eating the odd biscuit and drinking water.
She has had two baths and is displaying a rash under her arm which was a bit alleviated after one of the baths and diprobase cream.
15:05 I leave with Vicki – tomorrow Vicki swaps with Izabela and stays in GOSH, until Saturday morning when she will swap back with Izabela – the plan is for us to be at the Wolverhampton donor day on Sunday, Margot’s situation depending.
16:21 Margot’s eating Ella’s kitchen puffits & playing with her kitchen.
20 February 2014: Day -1
07:28 Izabela text: Good morning. Last night was good. Very good. A normal routine. Margot’s skin is a little red but it looks like it’s not bothering her. They continue to administer Piriton (no steroids needed). We have been awake from 6am : yogurt, “nana” – all good. Big kiss from us 🙂 x
10:02 Vicki heads for GOSH to swap with Izabela. The boys are off to the theatre with their cousins Vincent, Nael & Yasmeen.
Meanwhile, Margot is busy, busy, busy…
Margot’s Hickman line dressing is changed.
11:10 Vicki arrives at GOSH.
14:42 Izabela arrives back at home with news that Margot will need some blood products today, so that she is in good shape for tomorrow’s BMT.
20:21 bath and then bed.
Margot’s blood numbers from today (06:45):
Haemaglobin 64 – because this is now below the threshold of 70 (and is likely to have fallen lower still during the day) Margot is to receive an infusion of blood tonight.
White Cells 0.27
Whilst we have enquired a few times today leaving messages, no one has yet come back to confirm whether the donor’s stem cells have been safely received at GOSH. Given the timing and Margot’s now urgent need for a BMT tomorrow, we take solace in the fact that if there were an issue with the bone marrow donation, then one of us (and probably me) would have been asked to donate bone marrow today ! Neither Vicki or I have received any such call, so that must be good news.
Professor Veys has told us that before Margot receives the bone marrow donation tomorrow, they will need to first manipulate the donation and filter out the red cells which are not required by Margot; in fact the donor’s red cells would cause issues if they remained. This is likely to happen first thing tomorrow and whilst we haven’t been told / notified of the timing, we anticipate the donation will occur sometime after 11am / noon tomorrow.
So tomorrow is a big day for a number of reasons. We regard it as a good milestone for Margot to have attained because it heralds the time when chemotherapy treatment ceases and her recovery begins. From hereon, we hope the stem cell donation will be accepted by Margot’s body without too much fuss and work it’s magic; the only medicines required going forward are the ones that might be required to alleviate pain / ameliorate other issues that might / might not arise, rather than medicines of the harmful / destructive kind.
At least that’s the plan.
What we don’t know is to what extent the ‘fallout’ from the chemotherapy will last and how it will affect Margot, nor for how long.
Nor, of course, do we know how she will receive the bone marrow donation.
For now at least, Margot seems to be coping well – we had a chat earlier tonight before bed and I managed to catch her in a good moment, primarily prompted by Rufus clowning around. Fingers crossed she remains in good form, inshallah.
23:34 Blood arrives & infusion begins.
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.