Lisa G.
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Interim Maintenance

Lisa G.
Posted by
10 Mar 2016

Starting phase 3 of Hugo's treatment.

Over the past couple of weeks Hugo has finished phase 2 of his treatment and started phase 3, interim maintenance.  No treatment break, this time we were straight into it. We were given the rest of Hugo's treatment plan, all 3 years of it. This means we also have an end date which is September 2018. For a planner like me it's good to know what we are dealing with, what is happening and when. However the pages and pages of treatment schedule which now sit in our blue folder are without doubt daunting.

Last week we headed up to GOSH where Hugo received a high dose of methotrexate as an inpatient.  It was the first time we had returned to giraffe ward and it was strangely comforting to be back.  To see the lovely nurses who had been there with us at the beginning and for them to see how far Hugo had come.  To feel the safety and security that I had been so nervous about leaving behind when we'd been discharged.

When we were last here, Hugo wasn't walking, we had to carry him everywhere and he was shy and nervous.  I wasn't sure how he would react to being back, whether his new found confidence would leave him and he would once again become scared and nervous of the doctors and nurses.  It took a little bit of adjusting, getting used to the prodding, poking and disturbed nights again, but Hugo remained cheerful.  A little shy to start with, but by the end of our stay he was happily helping the nurses to do his observations and giving an encouraging 'come on the good stuff' when the nurses took his blood.  This time, I was chasing him along the corridors, dragging his drip stand behind us.

The methotrexate IV takes 24 hours, but the fluids that are needed alongside it are given before, during and after (resulting in LOTS of very wet nappies!).  Hugo also has to have anti sickness medication and folinic acid to switch off the methotrexate once it has done its job as too much can damage the liver.  The drug needs to be fully flushed out of his system before he is allowed to leave. 

In addition to this Hugo was also due a lumber puncture.  As his wiggly was being used for the methotrexate and fluids he had to be put to sleep using gas for the first time.  He did not react well.  He woke up completely disorientated, upset and angry.  All the techniques we had perfected over the last 6 procedures failed miserably and it was a completely awful experience that left me in tears.  Sadly it will have to be repeated for the next 3 lumber punctures.  On a happier note, Hugo flushed the methotrexate out pretty quickly and we were home and back to our own beds after a 4 night stay.

Hugo loved getting home to his big brother and has spent the last couple of days checking on all his toys.  His resilience to it all once again shining through.  I'm feeling confident that the hospital stays, while difficult, are manageable.  For the moment, we are enjoying being back together for a few days before Hugo and I head back again for round 2.

28 September 2015

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