Thursday 31st January – Go go go

This evening 12 months ago, we were all in a Center Parcs bungalow.

After putting the kids to bed, Kath and I talked about worries about Lennie’s sight, and resolved that Kath would take him in to the park’s medical centre in the morning to get it checked out.

The time between now and then has both flown by in a blur and felt like the longest, hardest year of our lives: moments of seemingly unbearable pain and fear balanced out by an incredible gallery of compassion, kindness and determination from our families, friends and Lennie’s extensive medical team.

We are, above all, extremely grateful to have arrived at this point: in the past week Lennie has successfully settled into his nursery, and is already noticeably more confident and contented. The anxiety about his Hickman line is a quickly fading memory. Every day, Lennie is showing us that he wants to explore and enjoy the world, in his own inimitable style….

p.s. a very big thank you to all of you who were able to join us last Saturday for a celebratory shindig – it was a wonderful night for us both X

Friday 18th January – before and after

Eleven months and eighteen days ago I drove Lennie to hospital during the first snowfall of the year, as we were worried his sight was failing. Soon after arriving he was given an emergency CT scan, and the results showed a large tumour in the middle of his head. A few hours later we were in an ambulance on the way to Great Ormond Street, unaware that Lennie was facing a hard year of chemotherapy and proton beam therapy, aggressive treatment for the aggressive cancer growing in his skull. 

Today Ed drove Lennie to Great Ormond Street during the first snowfall of the year, for the last procedure of this course of treatment. His Hickman line, which was inserted on 3 February 2012 so that he could receive chemo, was removed today. Here’s the before and after (enjoying his first proper splashy bath in eleven months)…

This feels like an ending of sorts. It may not be the end of Lennie’s cancer, as there is a chance the tumour will grow back. But he’s had two good scans which show that it hasn’t grown in five months, and he definitely won’t be having any more chemo for a while. I’m sure there are difficult times ahead as he adjusts to living with blindness and other complex needs. But he is well, happy, putting on weight and developing like a reassuringly normal not-quite-two year old (tantrums included). We are relieved and happy – and lucky – to have got to this point.

Friday 11th of January – Beginning to begin

We’ve resolved ourselves to a subdued start to 2013 – Lennie is spending more time being cheerful and active every day, but his digestive system is still a bit fragile.  A week today he’ll be having his hickman line out, which will feel like a bit of a milestone – and for the meantime we can enjoy his burgeoning eyelashes….

 

Sunday 6th January – hibernating

We’ve had a tiring couple of weeks. Lennie had a vomiting bug on Christmas day (which he then passed round to our extended family – sorry everyone). For most of us it was just a 12 hour bug, but Lennie’s digestive system has had such a knock recently that he found it much more difficult to recover. He was sick for about 10 days, and we were getting worried as we didn’t want him losing lots of weight and ending up in hospital again. Fortuntately it hasn’t come to that and he seems to be on the up again now. He’s drinking enough of his special milk for his weight to stabilise again, and is even having a go at some solid food as well. 

This has made us realise that he is still very vulnerable at the moment, even though his immune system is in much better shape than it was during chemo. We were hoping to settle him into nursery and start taking him back to toddler groups during the next couple of weeks. Instead we’re going to play it safe and hibernate at home for a while longer. He is due to go to GOSH for removal of his Hickman line on 18th January, but won’t be able to have the procedure if he is not well. So until then, we will hide away in our little corner of Tottenham and enjoy some quiet recovery time…