It’s 1234 days after diagnosis, and we have reached the ‘end of treatment’. There were no bells, no hurrahs, just the last planned dose of night-time medicine at 10.30 pm, and that was it. We are now at the beginning of the next stage: every day that passes is another day since treatment ended. For the past few months we have slowly been letting go of the safety-net of the ward, counting off the various ‘last times’ of the treatment protocol. Some things have yet to finish: there are the weekend doses of antibiotics that will continue for a while; and then the catch-up with childhood innoculations; and periodic check-ups with the consultant.
So as we reach the end of treatment, we set out once again on to a new path. Unlike the day this all started there is no threshold, dropping us suddenly into a new and unknown world; this time there’s just the diminishing form of the place we are leaving behind.
Today, three years and four months after Joe was diagnosed with Acute Lymphoblastic Leukaemia, saw the next step towards the planned end of treatment. We are now in week 164 of the UKALL 2011 protocol, on the branch of the trial that includes ‘steroid pulses‘: five days of steroids, morning and night, every four weeks. I have lost count of how many of these pulses Joe has endured, but it feels like forever that we have been counting down. Then, this morning was the the last planned steroid dose of maintenance. The formal ‘End of Treatment’ is still a few days away; and with it, the start of the next phase of adjusting to life beyond medication.
The past few months have started to prepare us for the new horizons, and slowly relax the bonds that we have formed with the ward. In November, Joe’s Hickman line was taken out, after he picked up another bacterial infection. Two weeks later, and he was back in the swimming pool for the first time in over three years – and doggy paddling for Britain. With his central line gone, baths have become deeper and wetter; and we no longer need the weekly visits for line care and bloods from the wonderful outreach nurses. But the daily tick-tock of nighttime medicines continues, for just a little bit longer.
After more nights than we may wish to remember, the blood cultures have stayed clear, and the bacteria on the line have gone. A big sigh of relief; and just another week of antibiotics (once daily) to make sure that nothing comes back. There’s little to report from our nights on or off the ward – but we are all looking forward to slipping back into the routine of being home.
In the landscape of lymphoblastic leukaemia, the state of maintenance seems to go on for ever. Especially so for boys; where the formal ‘end of treatment’ is a full three years and more away from the start. Once we had settled into a routine with maintenance therapy, it was as if we had entered a hinterland. While the anguish of the early treatment was starting to fade into the distance, the future was still far beyond the horizon. But the daily routines of night-time medicine and temperature-taking were still there, as a nagging reminder of the strange country we were inhabiting.
Against this backdrop, life has been moving on. Another school year has come and gone; and another summer is giving way for autumn. Then, just as our summer break was coming to a close, a temperature spike propelled us back into the ward. We had room with a view – of the setting sun, and a roof-top panorama of Plymouth – but no wifi. Following protocol, Joe’s bloods were cultured for bugs – but we’d never seen a signal before, and weren’t expecting one now; it was just a late summer chill. But it wasn’t. A bacterial smudge showed up; and again. And again. We extracted ourselves from Derriford, and checked back in to the familiar home-turf of Kamran’s ward, and there it was again. A trace of bacteria, ‘gram cocci’, hiding out in one of Joe’s lines.
Now it’s time for the heavy artillery, to try and rid his system of bacteria: vancomycin, ‘the vanquisher’. Once known as ‘Mississippi Mud‘, this is an antibiotic that has come of age. Discovered in a soil sample from Borneo in the 1950’s, vancomycin is now the bactericide of last resort. Unfortunately for Joe, it is delivered in a slow intravenous infusion; an hour at a time, three times a day. So we are checked in to the ward, and oscillating between the worlds inside and out. Fortune – always a relative term – is a little on our side. We live close enough that Joe can have nights on the ward, but still get to school in the morning. Since Joe doesn’t feel unwell, and seems not to be feeling any side effects from the drugs, this does at least help him pass the time happily between doses. We’ll find out whether the vancomycin has worked in another day or two; but for now, we’ll have to continue to sit it out.
The school year is over, and summer is here. Joe has finished year 1: his first full school year on maintenance. He ended the year with a 98% attendance, a ‘thank you’ certificate for having been on school council, and at the ‘expected level’ for phonics and reading.
Twenty-one months into treatment, and Joe’s first football tournament. What a wonderful moment to celebrate, and savour. Thank you to everyone who has helped us all to reach this point.
Somewhere over the rainbow.. away above the chimney tops
Summer is nearly upon us, and the end of another school year is approaching fast. Joe has been coaxed into shorts and short-sleeves, and is suddenly excited about playing in the school football tournament. He looks no different to any of his classmates; but the daily, weekly and monthly routines of maintenance chemotherapy play out unseen, in the background.
Twenty months have passed since Joe was diagnosed with acute lymphoblastic leukaemia, and we have now reached the half-way point for his treatment on the UKALL 2011 protocol. This is only a small milestone on a very long journey; a pause for reflection, rather than celebration. As far as we know it isn’t ‘half way’ to anything other than to the end of planned treatment in February 2018. Who knows what may lie between now and then; leave alone in the months and years beyond that?