Phase 4 Part 2

So we are now in the second part of phase 4.  Along with the cyclophosphamide, Friday’s visit to GOSH saw us restarting the dreaded mecaptopurine.  Another 2 weeks of the yucky, nil by mouth chemo that Hugo really dislikes.

In addition to this, he had his first dose of a new drug called cytarabine yesterday, bringing his drug total during this phase to 12.  This is another chemo and it can be administered, via wiggly, by the community nurses in the comfort of our own home, which is a relief, given that it is due right around Christmas.  He needs 4 doses this week, then a few days break, then another 4 doses.  The drug comes with an emergency pack.  The nurses have to wear protective clothing, including goggles, which gives an indication of how toxic these drugs are.

Let’s hope they don’t spill any!

We have been told this drug can cause flu like symptoms, including temperatures.  This would be concerning at any time, but the close proximity to Christmas makes me extra nervous.  A temperature would see a 48 hour hospital stay for IV antibiotics, so our fingers are firmly crossed that we escape this particular side effect.

There had been a little misunderstanding between GOSH and our local team and the nurse that came out yesterday was unable to give the dose as their guidelines state the first one has to be done in hospital (all community teams have their own guidelines).  So, another unscheduled trip to our local hospital.  Today’s dose didn’t go much better as Hugo’s wiggly went on strike again.  Another trip to hospital to get it working again and administer the drug.  Hopefully it will be third time lucky tomorrow.

However, in-between all these drugs and trips to hospital we have been able to have a little fun.  At the weekend Hugo and Henry got to meet Father Christmas, while mummy and daddy drank mulled wine and scoffed mince pies.  A lovely, normal family time in amongst the chaos.

Meeting Santa is clearly a very serious matter! (Note Hugo holding on tightly to his mince pie – he likes to take food, not so much the eating!)