A Mother's Heart

Hi there, I thought it was time that you heard from me. I have been wanting to write for days actually but have been too exhausted to. I am currently snacking on tea & toast and my son is finally asleep after a long battle from this afternoon into tonight. We finally caught on (the nurses and I) that it was a hunger issue and have since bumped his feeds up and he has settled. His Dad is currently trying to get some shut eye as he only slept 1 hour last night, so we will swap over at midnight and Simon will sleep in the room with Oliver and I will sleep in the single bed we have in a separate room, that we call ‘The Sleeper’. Have we told you about that? We are very blessed to have that – most families can’t have both parents staying and a lot of parents end up sleeping in recliners next to their children’s beds, but as I am breastfeeding I get priority and we have a small room with a bed and a wardrobe, very handy for storing all our crap, for sleeping and for hiding from the world, quite often I get in there, shut the door and breathe a sigh of relief that I no longer have to deal with anyone.

There are so many complexities that come with living in a hospital, from lack of privacy – quite often Simon and I get caught out by one of the nursing staff for having a cuddle on the bed in Oliver’s room. No space to ourselves, even walking to the toilet and back you are bound to bump into somebody, whether it be another parent or a staff member and although often this can be encouraging, sometimes it can be pretty damn annoying and when someone asks me how I am, sometimes I feel like yelling “How do you think I am, my child has cancer” (often with a few expletives thrown in)

So this gives you a bit of a look into some of the frustrations of being here. A positive has been the sharing we have done with other parents, Simon had a beer with one of the other Dads tonight which was great and one of the other Mums popped in twice today to introduce us to her 2 kids.

Now to Oliver, an update on our precious little bundle. I say that and have to chuckle to myself as currently I would not describe him like that, the last 2 days he has been like an angry monster or a raging lion – “It’s the drugs!” Our dear sweet Oliver has turned into a screaming machine. The joys of breastfeeding have been overshadowed today by the fact that he is just so hungry from the steroids that I simply cannot keep up. Not only that but at times I have been faced with not being able to comfort my son which I have found very difficult. He is having trouble sleeping and being settled and will cry in our arms – which to me I find devastating. Whereas before hospital a Mummy cuddle will fix things, in hospital it doesn’t always. Not only that but I have no idea what this screaming monster wants or needs and he cant tell me, so along with the nurses and doctors there is a lot of guess work going on.

He is getting better physically though, plenty of poos we are pleased to report, in fact the sheets were changed twice today as a result of wees & poos, his mouth is healing nicely and so are other abrasions on his body. However when the going gets good, the doctors here decide its time for more chemo and then everything goes downhill again. So tomorrow Oliver has a lumbar puncture in which they insert a chemo drug into his cerebrospinal fluid. He will be under a general anaesthetic, I hated watching them the first time they put him under, so I won’t be doing that again. We are anxious about this as last time he was very unsettled after the lumbar puncture and we think was suffering from a headache – that is a side effect.

So basically, we are on this frustrating ride where things start to improve then he gets more chemo and things turn to pot again!

I should finish up as I imagine I am writing much more than Simon does and probably more longwinded too, but like you I have enjoyed reading our blog, with Simons reflections on our journey. Thank you from me for your love, prayers and support and I will be in touch again soon.

Love Karls