Two weeks ago, Asa had his second dose of chemotherapy. So far, the second cycle has been much easier than the first. We’ve managed to stay at home except for short visits to hospital, and we've largely succeeded in controlling Asa's discomfort.
Part of the reason for this is that we’ve been giving him potassium supplements to head off hypokalaemia, whereas the first time around it was several days before we began using potassium. But a bigger reason is that the dosage of the most potent of the drugs he is on – Vincristine – has been halved.
Halving the dosage of this drug is a big deal, because our most immediate challenge is managing the side-effects of the chemo drugs.
In the first cycle that meant trying to distract him from pain. This time it's mainly meant trying to get him to eat.
|Asa feeding Jed feeding Asa.... Oranges are the only food he's never refused.|
Expecting that Asa might have difficulty feeding, we had a naso-gastric tube inserted just a couple of days after the second dose of chemo. The tube is useful not only for topping him up with food when he’s not taking anything by mouth, but also for giving him anti-nausea medicines and potassium syrup (which can themselves be nauseating to swallow).
Thankfully, he has been breastfeeding well throughout.
In this way we’ve been able to get him through the rough first few days of the cycle, until his appetite starts to revive.
Next week, we'll learn whether the drugs have been working – whether the cancer is receding. On Wednesday, the staff at the Retinoblastoma Service in London will examine Asa’s eyes, and assess how much the tumours have shrunk since he began chemo.
For the time being, the main indication we have of how the medicines are working is Asa's blood counts. These give us an idea of how effectively the drugs are inhibiting the reproduction of fast-developing cells throughout his body (including the cancer).
The blood components that are most important to keep track of are haemoglobin (red blood cells) and platelets. Haemoglobin carries oxygen to cells, and platelets help the blood to clot. They’re important not only because they serve as an index of the drugs’ action, but also because if they fall below critical levels, one needs transfusion.
|Platelet and haemoglobin counts for cycles 1 and 2 of chemotherapy. |
Cut off points for transfusion are 30 for platelets and 7 for Hb.
Yesterday Asa's haemoglobin levels dropped into the danger zone for the first time, and today he received blood transfusion at our local hospital.
This is something we'd been hoping to avoid. But, as with so many other choices we’ve had to make recently, transfusion is much better than the alternative – seeing him become more anaemic, and increasing the risk of spontaneous bleeding.
Who are you calling anaemic?
Asa hadn’t shown any of the lethargy that often accompanies anaemia. In fact, even during the days when he wasn’t eating, he looked and behaved much like any other toddler, ebullient and energetic.
But it was a pinker, better perfused Asa who emerged from hospital this afternoon, with 200 ml more red blood cells in his system than before.
|Taking a walk in the hospital corridor during transfusion|
In the past week Asa began to stand by himself, and to walk confidently when his hands were being held.
It’s a source of wonder to us that, despite all he’s going through, Asa should be developing as fast as he is.
During a week-long stay in hospital last month, he began saying, “Dada”. He claps his hands and applauds himself when he’s succeeded in stacking hoops onto a pole (one of his favourite games). And his babbling becomes more florid and melodic each day.
All of this buoys us up, and keeps us optimistic.
As my mum observed, in some ways it’s easier for those of us who are with Asa day to day than for those who aren’t, because we see the happy times as well as the sad ones. Those happy moments are in large part what keep us going – them, and the love and support we receive from friends and family.
Many thanks to all who sent birthday wishes to Asa. And to everyone who's reached out to us.