BLAST. I would have given anything to not have started writing this journal again. Anything. Everything. This week was the centenary of Team GB joining WW1. This week there were sightings of insurgent cells in Laughlins blood. Earlier this week we were leaving the ward to have an afternoon at home between IV antibiotic treatments, and we bumped into our consultant here. He grabbed us and said there were urgent bloods that were needed to be couriered to GOSH- The technician has identified some blasts in the blood so we need to send it to GOSH to be sure about what they are. BLAST is right. It felt like we had been sent flying across the room, to collide with the wall and be showered in glass. Choke on the smoke, ringing in our ears, eyes streaming. In the Leukaemia War, it feels like blasts mean just one thing - ITS BACK. Everywhere you look - ITS BACK chokes you, deafens you, blinds you. Only no-one else is running, screaming. We were there to shield Laughlin, to take the full force of the blast, so that he has the chance to stride through the wreckage and into the light, victorious. We cling to the chance that it is in fact collateral damage, from the battering his marrow has taken over the past couple of months. The killing off of his lovely new B cells to indirectly kill the glandular fever virus (which incidentally has also returned), immunoglobulin to provide immunology insurance in the meantime, and the stimulation of his suddenly underperforming white cells, as well as steroids to control the conflict between his old and new stem cells. It is possible, cross-your-fingers-and-hope-to-die possible, that all this chaos has created a few inconsequential undeveloped cells that have slipped into his bloodstream. Or the technician read his radar wrong. Or that we have a miracle. Not yet at least. Today, Great Ormond St confirmed that leukaemic cells are in his blood. If there is one word you want to hear less than Blast, it’s Relapse. It’s like non-standard, mis-shapen products have begun to appear from his blood-making factory... and if that’s the case, what’s going on in the factory? Where is the quality control? Who’s running the factory anyway? Hence a biopsy of his marrow today. We now wait for the great and the good of GOSH, the UK and internationally, who meet tomorrow, to argue out the pros and cons of treatment options. But the two extremes have been named for us today – palliative care vs. Second transplant with a 10/10 umbilical cord we know exists. In between are the clinical trials and experimental treatments which we are searching for, worldwide, to consider. Your mind plays tricks on you, I found myself standing in the shower trying to bargain with God - as if that is how things work. The what ifs, what ifs, crowd around you, shouting to make themselves heard. But the point is, we have not lost Laughlin, he is still here, snoring loudly upstairs. Legs crossed. Fingers crossed. Laughlin has not given up, and neither shall we. We have been making Hama beads, of Star Wars characters mostly. Last night he hit on the idea of Harry Potter characters, and so we have begun work on a duel, Voldemort and Harry. We are in a dual. Who will blink first?
Posted on: Wed, 06 Aug 2014 20:37:22 +0000
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