I wrote the following post a year ago today; it was 12 days after Margot returned home from Great Ormond Street Hospital following her bone marrow transplant. Margot was settling back into “normal” family life – all seemed OK.
It provides a glimpse into what I suspect, under the circumstances, is a pretty typical thought process & state of mind, given the patient journey.
We now of course know that our worst fears were soon to be realised only a short while later.
22 April 2014
I’m told that I shouldn’t count from this point of reference, but today is the 200th day since Margot was diagnosed with leukaemia.
I don’t want to make a big thing about it, but for us that was the day that everything changed and I haven’t quite let go just yet. Besides, it’s 200 days on from a time when Margot’s chances of survival were rather slim, so in that sense it’s a good metric !
This was a video that Vicki took on Wednesday 9 October 2013, when Oscar & Rufus came to visit Margot in the Paediatric Intensive Care Unit (PICU) at Great Ormond Street for the first time. It was about 30 hours after Margot arrived at Great Ormond Street Hospital. The medical team encouraged us to bring the boys in early; Vicki in particular was concerned that they might get tormented by the experience, but as you’ll see they dealt with the whole situation in a remarkably positive way:
Margot has done unbelievably well since then – she has coped admirably with anything and everything that has been thrown at her. When you compare the perilous condition she was in when admitted to Great Ormond Street Hospital and then look at her today, we feel really very lucky and on so many levels.
Things are going pretty well now Margot is at home. We have her medicine & feeding routine under control and are working towards her regaining her appetite, building her strength and improving her blood constitution so that she can have the Hickman line and NG tube removed (this will take several months yet). Our family is whole once again.
So far, so good.
And whilst I know we are in the best possible situation given the journey Margot is on, I’m nevertheless fearful of the ‘what if’ scenario.
In our time at GOSH, we have met several children who haven’t been as fortunate as Margot and our hearts go out to those families. They all endured a similar experience to ours, but they were also dealt a fatal blow in addition.
The common denominator as far as relapse is concerned seems to be that if there’s a problem, it’s likely to rear it’s head sooner rather than later and so I can’t help but remain fixed on the next bone marrow aspirate procedure scheduled for 6 May and the all important results of the MRD (Minimal Residual Disease) tests which we hope will confirm that Margot remains disease free. These tests are to be repeated regularly and often throughout the first year post BMT, later becoming annual check-ups.
As such, the doctors don’t really talk about being “cured” for some time yet to come and because Margot’s leukaemia was so rare, they don’t really know what to expect.
The other day, someone pointed out that ‘bad news’ tends to linger longer than ‘good news’. It struck a cord with me, because whilst it is undoubtedly fantastic news that Margot is recovering to the point where we can care for her at home, that happy feeling of relief has given way to the nagging concern that our luck might run out / the disease remains present but undetected / some other unthinkable nasty might befall us.
I’m sure it’s entirely “normal” for a parent to feel this way, but nothing about our current situation really feels that normal.
However, for the time being, all IS well and so I’m going to follow Margot’s lead and try to focus on living in the present. That’s worked for her after all.