Wonderful Giraffes

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Day 95 of Hugo's treatment sees up back at GOSH for high dose methotrexate round 3. As usual we receive a warm welcome from the wonderful nurses on Giraffe ward.  We have been on Giraffe ward for all of our stays so far, even though there are 2 other oncology wards.  Giraffes are Henry's favourite animal so it seemed fitting and strangely comforting when they brought us here after Hugo was diagnosed, like this was the right place for us to be.  The ward is starting to feel like a second home and the nurses, many of whom have been part of Hugo's journey from the beginning, are starting to feel like friends.  They have supported not just Hugo, but all of us.  Building our knowledge and our strength.  Giving us the confidence to continue when they are not by our side.


Relishing Normal

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We have been having a lovely normal week at home.  We've had the car serviced, been to Henry's parent's evening, I even managed to get my hair done.  This is excitement these days, getting to be normal.

A Constant Supply of Gingerbread Men

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Since this journey began, I've found myself on occasions drifting into a kind of glazed daydream, pining for all the things we are missing out on since Hugo was diagnosed.

A Mini Break

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We have just experienced our first unscheduled hospital stay.  I suppose this is what we have been waiting for ever since we came home.  I suspect we are lucky to have made it this long.

Interim Maintenance

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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.

It's only hair

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Given the enormity of what Hugo is going through it seems silly to be concerned about hair loss, vain even.  But ever since his diagnosis it feels like we have been waiting.  We were told it was going to happen, that it wasn't a question of if, but one of when.  It could happen quickly they said, or it could take weeks, months even.

We're going to the Zoo!

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Today marks the 2 month anniversary of Hugo's diagnosis.  It feels like we have come a huge distance in that time.  The immediate shock has been replaced with new emotions, equally as difficult, but perhaps less intense.  We have found our way in the darkness, adjusted somewhat to the new normal and found light in the amazing way Hugo has coped with his journey so far.  His strength has been contagious and we are all still standing strong.