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Advice for surviving chemo


Have you ever had the experience of coming up for air after working hard on something for a long time, and being surprised to find that other people have been going about life as normal?

That’s what it’s been like finishing chemo.

During chemo, the thought of taking Asa to a nursery, or on a train (crowded environments where he could pick up an infection) would have made us giddy.

Now, we can go out like normal families do, and there's rarely a day when we don't take Asa on an excursion by car, bus, or train.

On an outing in Frinton


Before the memories fade, we'd like to share a few things that might be useful for other families with children going through chemo.

Some tips

In no particular order, these were things we found useful for keeping Asa clean or safe:


 
  •  a play pen, to keep him in a dirt-free space

  • grapeseed oil & cotton balls for wiping his bottom during nappy changes (much less likely to irritate skin than wet-wipes)

  • an in-ear thermometer to check temperature (quicker and more convenient than oral or under-arm thermometers) 

  • clorhexadine mouthwash, applied with a foam 'lollipop' (to stop mouth ulcers from turning ugly)

  • hand sanitizer for your hands and baby’s – plus his toys, the floor, etc. … (a supplement to frequent handwashing) 

  • maintaining a “no shoes” policy in the room/s where baby spends most time

  • vitamin syrup (even if baby's not eating well, you can at least ensure he's getting vitamins and minerals this way)*

Some other things helped keep us sane during the months when we were more or less under quarantine:

  • watching movies, especially ones that could be easily interrupted and returned to without losing the plot (nature documentaries were good for this)

  • taking up new hobbies – crosswords, crochet, sudoku, jigsaw puzzles, guitar, etc. (to while away time indoors / in hospital).

  • getting counseling.  We were connected to a counselor through the Retinoblastoma Service at the Royal London. This was a tremendous help in terms of emotional support, dealing with the depression and uncertainty that followed the diagnosis and the stress of chemo.

We also had to stay on top of a complicated and intense set of duties. At one point, we were giving 5 different medicines per day – anti-nausea, anti-pain, antibiotics, mineral supplements, and so on – each on a different schedule.  Keeping a notebook for recording doses of medicines we were giving was crucial – especially since the times when the drugs were most needed were the times when we were most likely to be sleep deprived and stressed out.

Asa's pharmacopoeia


These days Asa’s making great progress – he eats, romps around, laughs heartily when we laugh, cries when he's feeling neglected, and generally acts like an ordinary toddler.



But the job (or battle, or game – choose your own metaphor!) is not over yet.  

Today he had cryotherapy in London, and the news is that he will undergo IAM  (intra-arterial melphalan a procedure that will deliver chemotherapy directly to the right eye)  next month. 

More on that later.

We're grateful, at least, to have made it through this stage.
 
____________________________

* certain vitamin / mineral supplements are contraindicated for children taking chemo drugs for leukaemia, so check with your doctor before using them if this applies to you.

Please let us know if you have suggestions for other things that could be useful for getting children through tough times like this!

Comments

  1. I certainly hate that you've had to become experts and advice-givers on this topic, but I hope parents in similar situations can learn from this blog and this particular entry, and more importantly, know that they aren't alone. I love the pictures- he is adorable and looks healthy and happy, which is as much a testament to his loving family and friends as it is to the medical interventions he is accessing to restore his health. I'm sorry he faces another round of treatment, but as always, hope that the outcome makes this all worth it.

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  2. I am grateful that I came across your blog with such good information! My 2 1/2 year old daughter was diagnosed with unilateral retinoblastoma yesterday. We are going to New York City next week to start all of the testing and possibly start chemo. I'm glad you have shared some things to expect during chemo because I'm trying to be as prepared as possible. I'm glad to see your little boy is improving and wish your family the best of luck! Thank you for sharing your story.

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