The second cycle

 

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.

Blood counts

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. 

Today is day 20 of Asa's first round of chemotherapy.  I last wrote on day 4, and since then we've had some ups and downs.  

For about 5 days Asa was very distressed and uncomfortable, and could be distracted from the discomfort only fleetingly.  His appetite was faltering, and then dropped off almost to nothing.  For two or three days following he was limp, too weak at one point even to roll over in bed.  When he was left to himself, he'd either sleep or stare blankly at whatever was before his eyes.  When he was moved, he'd feel pain, and protest.

A couple of days in to the distress and discomfort, we took Asa into hospital to get him checked out.  Paracetamol, even at the highest doses recommended for infants, wasn't having any effect; we imagined we might be sent home with some more powerful painkillers.

As it happened, we were in hospital for the following week.  Admitted with hypokalaemia (low potassium), he was immediately hooked up to a potassium drip, and it took several days for his blood potassium levels to stabilise.

It was during that week in hospital that he transitioned from the chronic discomfort to the -- even more worrying -- weakness and limpness.  He'd been eating very little, and in retrospect it seems clear that his energy levels were very low.  Our only consolation was that he was still breastfeeding. 

When he lost interest in the breast, we started to realise that the option a doctor had spoken of when we were admitted, a naso-gastric tube -- which at the time had seemed distasteful -- actually sounded pretty good.

Seeing the tube inserted through Asa's nose and into his stomach was one of the less pleasant experiences of my life. 

But over the following days, as we learned the basics of NG tube care and maintenance, pouring and pushing formula milk and various drugs down it 3 or 4 times a day, Asa made a remarkable comeback.


Only the night before last -- about 60 hours after he'd been readmitted to hospital with a fever and placed on prophylactic antibiotics -- did the tube come out (it was starting to leak from the outside end; its shelf life of 2 weeks was almost passed). 

But by that time, his appetite -- even if not back to pre-chemo levels -- was much improved, and he'd become once again the lively little man we knew and loved.

Last night (February 3) he and Selam got back from hospital, and had dinner at home, and Asa crawled around on the floor and babbled at us; and went to sleep. 

And today he is one year old.

Asa, home again, on his birthday