Into the darkest night. When Laughlin was three we visited the Tate Modern. At the time there was an installation of a giant shipping container - around 10 times the normal size. It was elevated off the ground, with a ramp at one open end, allowing visitors to climb up and into it. Inside it was lined with something that felt like black velvet, floor to ceiling, - I say felt, because there was no light. A few steps in, and even the shadows disappeared. It was black as pitch. But there were others in there too, groping (!) around in the dark. You could hear them. You could turn around and see the black outlines of those who followed you, silhouetted in the doorway, but that was all. We did not venture in too deep. I feel as though this is the second black box that we have entered, though this time Laughlin is the leader. This last 10 days has felt like we have ventured into some of the farthest, darkest corners - only you dont actually know if thats true as you cant see a thing. Not clearly. As you know, we had a plan. Get Lockey better, try some mild chemo that has had good results with his particular leukaemia, and prepare for another, albeit riskier, transplant. As far as we were, are, concerned, we have achieved the first stage. He is better - the best that he has been since before his relapse. He has definitely become more well and stronger, and this weekend he has suddenly also transformed within - confident, chatty, emotional, everything. He is there, definitely there. He is such a lovely, caring, creative soul, and we just want to soak it up. Yet for about 6 weeks he has been bleeding from his stomach and gut. Not constantly, not profusely, but it has continued, and continued, and there has been evidence that it has been occurring throughout his digestive system. On and off. The transplant doctors had been treating it as Graft vs. Host disease as the gut and the skin are the most common places this manifests (he has also had significant rashes). We knew this, and went along with the steroids, stomach lining meds, and topical creams. But suddenly, 10 days ago, we were told that the bleeding could mean all bets were off about curative treatment, for two reasons. Firstly, we are relying on the graft to fight off any remaining leukaemic cells, but if there is this much GvHD but no reduction in the leukaemia, it is questionable whether this would work, even with a second transplant. Ouch. And if the gut has been already stripped by GvHD, a second cord transplant may risk catastrophic gut breakdown.... life threatening is an understatement. So, in short the risks are horrendous and the chances of success minimal. That is, if it is GvHD - which can only be confirmed by an endoscopy. And so Laughlins future, and our future with him, suddenly hangs in the balance. It was incomprehensible to us that we suddenly found ourselves there, given the plan, given that the bleeding had been ongoing for some time, and that no-one had mentioned these fairly fundamental issues. Unsettled, we both had it out with our consultants (a little complicated as we currently fall between the two stools of haematology and transplantation), in person and by email, and started seeking other opinions. Andrea email-carpet-bombed the great-and-the-good across the world who have expertise in secondary MDS/AML, refractory disease and second transplants. To gain other perspectives, to reassure ourselves that the range of opinions and possibilities were being factored in, and to consider whether his treatment would be better to continue elsewhere. Those who agreed to help (Friesberg; Boston; Minnesota) have been caring, compassionate and happy to both advise and consider offering treatment. We have found them to be interested in Laughlin, and as happy to work as team players, as to take the lead themselves. This has at the very least given us some further confidence - both in the decisions being taken here, but also that there are always the possibilities of alternate routes. And so, things came down to a top-and-tail endoscopy last Thursday, including biopsies. Despite the last 3 years, I remain somewhat squeamish, so imagine the state of my stomach when I was confronted with photos of the inside of Laughlins stomach. Think Jonah, or Pinocchio, crossed with the moon. Pink stomach lining, with many, many whitish craters, of various sizes. Ulcers. Everywhere. Top to (literally) bottom. Since then, he has begun to get a little sick of every doctor and nurse checking to see if he has any pain (which he doesnt) - they cant believe that he needs no pain relief whatsoever, with some thinking he would be on a morphine drip. Imagine if they knew he was regularly touring Covent Garden, hanging out with Russell Brand in his spare, pump-free time. Yesterday we entered the deepest, darkest blackness in the depths of the box. Blood, blood, and more blood. In one end and out the other. It was like the tap had been turned on. When he saw it Laughlin asked, for the first time ever, I am going to get better, arent I? While the ward doctors and nurses fought to arrest the bleeding, we sat in the Interview room - more of a corridor leading no-where. Some bright spark has filled it with oversized sofas, so you bump knees with the person opposite. Perfect feng-shui for discussing matters of life and death... The leukaemia is there, still there, the main feature of his underperforming marrow. But its not showing any signs of exploding throughout his body - which is what AML does. Eventually. And when, if, it does, its weeks. Unfortunately, that is now the least of our concerns. Laughlin now has another, immediate, life-threatening condition. The biopsy showed no signs of any causes for the ulcers, other than Graft vs Host disease, for which there is some, though not entirely conclusive, evidence. Without the immediate acute treatment he received today, there would be no tomorrow for him. And without further treatment with antibodies, there will be no Christmas. But a choice was still put to us about whether to treat it (with risks of infection, extra lines to go in and the like) or to step away. Only the quality of life they described revolved around being able to eat a little (he is currently restricted to clear fluids) and go outside for a walk. We would sit here and wait for that final infection, final bleed, final complication. My answer has always been, what would he say if he was 18, if we could put this to him? Would he choose that? No. He fights on, and so do we. The focus has shifted, and all bets are off about second transplants and the like. We will get there when we get there. Right now there is a new, immediate, battle before us - and he fights on, at least for a chance of something better than all this. It may be dark, but we still seek the light.
Posted on: Tue, 30 Sep 2014 16:39:37 +0000
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