On Sunday evening (30/01) we took Adam in to start his BUMEL-MAT with PBSCT. That’s BUsulfan and MELphalan Maximum Action Treatment with Peripheral Blood Stem Cell Transplant. “Maximum Action Treatment”. “High Dose Chemotherapy”. “Sub-Lethal Dose Chemotherapy”. I’ve heard it referred to as many different things, but what they all boil down to is the toughest period of Adam’s treatment thus far.
We enjoyed our final weekend at home as much as possible and delayed taking Adam up to the hospital for as long as we could. To be fair when the nurse phoned to ask where we’d got to, we had almost finished packing the car. When we arrived I was somewhat disappointed, but not altogether shocked to find we did not have an allocated side room, but were instead given a bed in a very ‘cosy’ (read small and cramped) 3-bed bay. The on-going building works at The Royal Marsden (they are currently refurbishing the old unit to become the larger revamped out-patients) have put a lot of pressure on the in-patient ward. Later this year it will be spread over two floors, upstairs for teenagers and adolescents, downstairs for younger children. At the moment however, everyone is accommodated on the upper floor whilst the ground floor temporarily houses out-patient facilities, consulting rooms, etc. It’s not ideal, for staff and patients alike.
I voiced my concerns very early on about the lack of an individual room, and we were soon visited by a number of people who explained that we were top of the list; the plan was for us to move as early as the following day and most definitely by the end of our first week there. I suspect my intervention didn’t materially affect the plan itself but rather just flushed out an explanation that hadn’t been forthcoming when we were admitted. As it transpired we were moved into one of the side rooms on Thursday and it’s there that we have remained since.
The chemotherapy (Busulfan) started on Monday morning. Adam was given six pills every six hours morning and night for sixteen doses. At 4am, 10am, 4pm and 10pm he donned his surgical gloves and knocked back one capsule and five pills in rapid succession. Considering Alison was waking him up at 4am in the morning for one of the doses he was so unbelievably good at taking them. No messing around, no fuss. We know he’s usually a good boy when it comes to taking his medication, but even we couldn’t have predicted how easy this part of the process was going to be.
Along with the chemotherapy itself Adam was on permanent IV fluids, IV Defibrotide twice per day, Ursodeoxycholic acid tablets twice per day, Glutamine powder twice per day, Cyclizine (tablet) and Ondansetron (IV) for anti-sickness, and Clonazepam tablets to prevent seizures. Our nurses have been very regular visitors to Adam’s bedside that’s for sure.
Throughout Busulfan Adam maintained a very healthy appetite, eating and drinking extremely well indeed. His biggest issue I think was being permanently attached to the pump stand because of the 24-hour fluids. After the last dose of Busulphan at 4am on Friday morning there was a 24-hour break before Melphalan commenced on Saturday. We hadn’t actually realised beforehand that Melphalan was given as a single short infusion; the schedule we had wasn’t explicit and we’d never posed the question.
It was pretty clear from Adam’s reaction later on into Saturday that Melphalan was some heavy duty stuff. Having eaten three good meals during the day and been his usual self, he began to complain of tummy ache as the day wore on. As bedtime approached he finally succumbed and was sick. Very sick. A veritable mountain of sick. Something like 450g of what one of the nurses had written up on the sluice whiteboard as ‘undigested spag bol’. Not a bad guess, but it was in fact shepherds pie. If only she hadn’t relied on a purely visual analysis…
Into Sunday and Adam had now lost his appetite almost completely. That said it was still fairly easy to get his medication down him, he was drinking ok(ish), and was still in reasonably good spirits too. As the afternoon turned to evening he grew more tired and became nauseous once more. This time when he vomited it was mostly liquid, and soon after he settled down to sleep.
Having been sick in the run up to bedtime on both Saturday and Sunday we had reasonably anticipated a rough night was on the cards. However, he slept soundly, waking only at 4am to have his anti-sickness tablet, and inevitably (still being on fluids) a gigantic wee.
Late into Monday morning Adam’s stem cells arrived on the ward ready for defrosting. Before having the stem cells returned he was dosed up with Pethidine, Hydrocortisone, Piriton, and Ondansetron all in quick succession. Finally the stem cells themselves were pushed back in, two syringes full. No sooner had the nurse begun pushing than Adam started to feel sick. Within seconds he had vomited. So much for me trying to get that half-a-slice of toast into him that morning! It’s actually quite a common reaction so we’ve since learned, but like a lot of things we didn’t find out until after the event.
The process of returning his stem cells was repeated on Monday afternoon and then again on Tuesday morning and afternoon. He was sick again on Tuesday morning, but not on either afternoon. No idea why.
So as we head into Wednesday the vast majority of the administration side has been completed. Adam is showing signs of fluid retention and the doctors are monitoring his potassium levels and blood pressure, but as yet we have no major areas of concern. Adam’s fluids should be taken down sometime during the day, and he will continue on with the supporting meds – defibrotide, urso, glutamine, etc.
We expect his counts to drop from here on, bottoming out around the weekend. During this time we’ll be watching closely for signs of mucositis, and hoping it keeps to a minimum. We know from our experiences post-TVD chemo that this is a highly painful and debilitating condition; we know from the doctors and other parents that children can experience the most extreme forms of it following high-dose treatment. For better or for worse we’ve decided against Adam having an Ng tube. Once mucositis sets it’s no longer possible, so we’ll just have to manage as best we can.
The period for the re-infused stem cells to grow new bone marrow is around 21 days from now. During this time Adam is highly vulnerable to infection, and also susceptible to developing serious side-effects of the chemo. Until he has grown new bone marrow and his white blood cell production exceeds a certain threshold he must remain hospitalized.
So far, so alright then. But we’d be kidding ourselves if we were to think the hard part was over – in all probability it’s only just beginning.