A Badly Decorated Christmas Tree

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We are currently 17 days into phase 4, delayed intensification.  During that time Hugo has had 5 scheduled hospital trips and 9 different drugs administered in a variety of ways.

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Delayed Intensification

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After a nice little treatment break Hugo has now started phase 4, delayed intensification.  Having had a break from drugs and hospitals, I have been feeling quite apprehensive about starting again.  We enjoyed having a little certainty in our lives and now we are into the unknown once more.  But, the sooner we get on with it, the sooner it will be over.  This is the last intensive phase before we get to maintenance which we are told is less arduous and will allow us to live a more normal life again.  At the moment maintenance feels like the light at the end of the tunnel, not the Big light that will come at the end of treatment, but a light all the same.

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Raising the Bar

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Today sees the end of phase 3.  Another one down, go Hugo!

I gave Hugo his last dose of mecaptopurine earlier this week.  He will have to resume taking it in a few weeks, but for the moment it's off the drugs menu.  I did a little celebratory dance and song, although I'm not sure Hugo was too impressed.  It has been so good to be able to get him up from his naps without the syringe of doom in my hand.  No tears, no struggle, just happy Hugo. We can now eat whenever we like, unrestricted by Hugo's 'non eating time', which I know Henry in particular will be pleased about.  Hugo and I used the occasion to have a biscuit - any excuse!

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Roar!

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Hugo and I are currently at GOSH for his last high dose of methotrexate.  We are on Lion ward this time, rather than Giraffe ward as usual.  The nurses on Lion ward are of course lovely too, but I am a little sad we don't get to finish our time here on our usual and familiar ward.  We are not Lions, we are Giraffes!  Of course there is plenty of time to visit the Giraffe nurses as we try to fill our days here.

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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.


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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.

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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.

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