Minimal Residual Disease

Today saw another trip to GOSH for Hugo, myself, and Richard, and another sleepover for Henry.  Hugo was having a dose of chemotherapy and a bone marrow aspirate.  These are not new for Hugo but today was different, today was a big one.  Today they would be testing to see if Hugo had achieved remission.

Yes, remission.  It seems hard to believe after just 5 weeks of treatment, but it is hoped that ALL patients will achieve remission after this first intensive phase of treatment.

However, this remission would not last, some level of leukaemia would remain, known as Minimal Residual Disease (MRD), which is why the treatment needs to continue after this phase.  Until recently there was no accurate way of testing for MRD, but years of research and a national clinical trial mean that Hugo will benefit from accurate MRD results, which will show the level of leukaemia remaining in his little body.  This level will be compared to MRD testing from day one of treatment and together these results will tell us how well Hugo has responded to the treatment and allow the doctors to tailor the next phase of treatment to Hugo’s needs, ensuring he is neither under- nor over-treated.

Unfortunately this testing takes time and we won’t have the results until we return to GOSH in 10 days time.  So it’s going to have to be pushed to the back of my mind for the moment.

Luckily we have some distractions.  The end of this week marks the completion of the induction phase.  Hugo has come so far since those early days post-diagnosis; not just physically but in confidence too.  It seems like a journey in itself and although he still has a long road ahead it feels like an accomplishment worthy of celebration.  Best of all, Hugo won’t be starting the next phase of treatment until we go back to GOSH in 10 days.  This means that after a quick dose of vincristine in a couple of days, Hugo is on a mini treatment break.  He will still need blood taken, but other than that, nothing.  No hospital appointments, no nasty drugs with their side effects, no procedures, no trips to theatre.  What bliss!

The end of the week also brings my brother’s wedding.  A little bit of light to look forward to in the darkness.  We don’t feel that Hugo is up to it so Richard is going to stay at home with him.  I am so relieved to be able to make it and am looking forward to some long overdue mummy and Henry time, watching my little brother say ‘I do’, celebrating and shutting off from our new normal, for just a little while.