Skip to main content
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


  1. Happy birthday little guy! So sorry you have to go through this, and can't wait for things to get better. We love you so much. Your cousins, Eric + Carolina

  2. Happy Birthday Asa! Thinking of all of you Jed.

  3. What a beautiful birthday boy. I hope he has many more smiles than tears during the coming year: his smile here warms my heart!

  4. Happy birthday to a very special boy! He is adorable, Jed! I was wondering why they fed him formula instead of breastmilk through the tube? When Charlotte was fed through a nose tube, they did breastmilk at times and elemental formula when she was having belly problems. I am so sorry your little man is going through this, and I think of your family often. Andrea Arrington

    1. He got breastmilk too, but Selam wasn't able to produce the volume the nutritionists wanted to give him through the NG tube. Another factor is that since he's a year old, he needs more than breastmilk alone can provide, so supplementing with enhanced formulas is helpful. Thankfully he started breastfeeding again pretty soon. It's interesting to hear about Charlotte's experience. Thanks for thinking of us, Andrea.


Post a Comment

Popular posts from this blog


Maybe it's all the to-and-fro'ing we've done on the trains between London and Birmingham for his eye exams, or maybe it's due to some kind of innate fascination with large moving things, but Asa loves trains.

I post these drawings of his partly to cheer myself up. It's been a pretty rough week, watching the US elect a con man as President.

Asa is an American citizen, and in 13 years time he'll be eligible to vote. I'm grateful that he's healthy, and that he stands an excellent chance of living a full life. But I worry about the world that he and his generation will inherit.

Let us pray for wisdom in our leaders, and for strength and resolve for those who resist them in the cause of the greater good.

Mixed results

Last Wednesday Asa was put to sleep and underwent an eye exam under anaesthetic. 
The first since the beginning of the new chemo, the exam showed that the drugs have had a "partial effect."

In Asa's left eye, the tumours responded well to the chemo. 
But in the right eye, there's been a slight increase in tumour activity.
And in the left eye there's a cataract developing.
A mixed bag
This was not what we'd hoped to hear.
We had reason to expect that the TVD (topotecan-vincristine-doxorubicin) combination would lead to shrinkage of the tumours in both eyes. 
And the appearance of a cataract -- a clouding of the lens -- at this stage is unusual: puzzling to the doctors as well as us.
While cataracts can be removed through surgery, cutting into the eye when there are active tumours inside is not advisable. So treatment for the cataract itself will have to wait until the tumours are stable.
The main risk in the near future is that the cataract may make it difficult to moni…

Hard questions

One morning recently, when we were trying to get Asa to put on his socks, he asked us, seemingly out of nowhere: “What does it have in it, my right eye?” It was clear he wasn’t in discomfort; it wasn’t that he had a piece of grit in there. He pointed up at his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.” “And what does it have in it, my left eye? Does it have a lens?” “No, your left eye doesn’t have a lens.” “What happened to it, the lens?” “The doctor took it out, because the eye was poorly.” “Was the lens poorly?” It had gotten --” “Cloudy,” Selam offered. “Yes, it had gotten all cloudy, and you couldn't see well through it. So he took it out.” “Who took it out?”  “The doctor took it out.” “It doesn’t have any lens.” “No. That’s why you have to wear glasses sometimes, so you can see better. And that’s why Mummy patches your right eye sometimes. Because we want you to see as well as …