Consolidation

We are now 4 days into the second phase of Hugo’s treatment, consolidation, a short phase at only 3 weeks.

As Hugo was unable to start the new chemotherapy drug, due to his low blood counts, his drug quota for this week is quite low.  There was the dose of methotrexate via lumber puncture on day 1, he also has to take co-trimoxozole twice a week, a drug used to help prevent infections that fortunately tastes of banana, but that’s it for this first week.

It is possibly because of this, combined with the mini treatment break before the phase started, that Hugo’s appetite has started to increase slightly.  Since stopping the steroids 4 weeks ago, Hugo’s appetite has been steadily declining.  He is managing a little something everyday and his continued milk intake means he is not yet losing weight, but it is far from a balanced diet.  We have been trying to sneak food supplement milkshakes into him to boost his vitamin and mineral intake, but they have not been well received.  Not at all.

Many children in Hugo’s position require a feeding tube.  Sometimes because of a lack of appetite, or a refusal to take medication, or because of mouth sores which make eating too painful.  We feel fortunate to have escaped this so far, so his slightly increased appetite has been met with a sigh of relief and crossed fingers that it continues.

Hugo remains surprisingly spritely for someone who has been eating so little.  He is making up for lost walking time and is almost as confident on his feet as he was before this journey started.  I am amazed by his ability to cope, by his bravery and by his slowly growing confidence.  He loves spending time with his big brother and I suspect he is really going to miss him when Henry returns to school next week and our new normal changes again.