Lisa G.
Posted by

Flying High

Lisa G.
Posted by
13 Feb 2016

Another big day for Hugo. Heading up to GOSH for the results of his MRD test and finding out if he'd achieved remission.

So another big day has arrived.  We were heading up to GOSH where they would give us the results of Hugo's MRD test.  The result that would tell us if he'd achieved remission.  Whether he would be classed as low risk or high risk.

I'd always assumed Hugo would be low risk.  Not from some kind of positive thinking, but just a feeling in my gut.  I know that getting leukaemia probably puts Hugo in the unlucky category, but somehow I felt he would be lucky with regards to this.  He was going to have a tough journey, but it wasn't about to get tougher.  My feeling was so strong, that I think I would have been really shocked had the results shown him to be high risk.  I would have ended up being disproportionately upset, devastated in fact.  But the results showed that Hugo had achieved remission and is classed as low risk.  Woo-hoo, go Hugo!

Despite my confidence that this would be the case, a huge wave of relief flooded over me when the doctors told us.  It gave me faith that Hugo still had some luck on his side, that things could still work out well despite the hand he had been dealt.  It didn't mean constant darkness, there could still be some light.

So we embark on phase 2, consolidation, with optimism, with light.  The lumber puncture procedure given today at GOSH kicks off this next phase, which will last for 3 weeks.  His low risk status allows him to continue on regimen A, rather than being moved to the more intensive and longer regimen C.  Hugo's blood counts are too low to start the daily chemotherapy due in this phase, so that is delayed for a week while we wait for his counts to recover.

In a fitting celebration, after we'd finished at GOSH, we headed off to Hugo's nursery where they were holding a fundraising event in recognition of Hugo's diagnosis.  The wonderful staff and parents wanted to raise money and awareness of leukaemia and, yet again, I was reduced to tears by the kindness of others.  Hugo has had to leave nursery, as the risk of infection is just too great, so it was lovely to see the staff who have looked after our little man with such care and dedication for the last 18 months.  They have taken him into their hearts and I know they will miss him as much as he will miss them. 

We all had a fantastic time.  Hugo shy at first, gradually got into his stride and Henry loved all the attention.  The highlight of the event was an amazing balloon release.  Watching all the balloons float up into the clear blue sky, flying high and free was a beautiful and uplifting moment (yes, more tears from me).  It seemed symbolic of the optimism and light of the day.  Another bright moment in our dark journey to lift us, to give us strength and hope.  We couldn't have asked for more from today.  Today was a good day.  Today is welcome anytime.

28 August 2015

Read more on Hugo's journey at

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