Thursday, 14 July 2011

Microscopic but annoying

I'm emotionally drained. I know that's a bit of a cliche but the phone rang a while ago after a day full of appointments, intense conversations, good news, bad news and confusing news and if it had been just one more thing that required concentration or detailed consideration then I would have been forced to arrange to call back tomorrow.

Katy had another appointment at the hospital today with a new consultant (General Medicine) that we hadn't met before and weren't expecting to meet, as we didn't know till 11.25 this morning that we had even been referred to General Medicine. We were expecting Paediatrics, Phlebotomy, Ophthalmology, ENT or Maxillofacial consultants, but General Medicine was a new one. Still, any doctor is a doctor worth seeing in the pursuit of a diagnosis for Katy and so we were at the hospital within half an hour from the phone call  despite having to collect Kate from nursery. She was about to have her dinner, poor little lamb, and it was something she liked too.

Anyway, the Gen Med Consultant told us that he knows what's wrong with Katy, so that makes him a very nice man indeed. It turns out that they have finally isolated the bacterium that's causing her bump to recur and it's not any of the enormous list of nightmarish conditions and diseases that it might have been. It's a germ. Not a condition or a syndrome. She could have picked it up anywhere as it's around in the environment. It isn't contagious. She was just unlucky. A bug. Microscopic but bloody annoying.

Thankyou.

It is, however, rare, and the little clutch of doctors that know Katy's bump inside and out are now discussing what to do about it. Apparently it doesn't respond well to treatment and they need to consult current research. (I've googled it and there's precious little available to the layman so I do hope they have more helpful stuff in their library). Now that they have identified it they know which drugs they need to prescribe for her but she would need to take them daily for two years, and there is a theoretical risk of permanent damage to her eyes.  She's got such a little body; how can they know what big drugs might do to her if she's taking them for two years? I'm not liking this option that much.

Alternatively, they could operate again and this time (I hope) remove all of the offending tissue, not leaving any to grow back, and avoiding all nerves and other valuable structures in her neck which are perilously close to this growth. Sigh. I'm not wild about that option either, to be honest.

We're waiting and seeing. In the meantime I'm fielding a deluge of appointments for a wide range of different clinics that are arriving thick and fast in the form of telephone calls, text messages and letters and trying to work out which of them were made pre-diagnosis, and therefore are still exploratory and thus now unnecessary, and which are post-diagnosis and still relevant. I am on first name terms with the ENT secretary.

So where are we up to? I'm saying thankyou so, so much that my little girl doesn't appear to have any of the scariest diseases and conditions that she was being tested for. Thankyou that someone worked it out. Thankyou that something eventually grew on one of the little petrie dishes in a lab somewhere and that they could identify it. Thankyou it isn't life threatening. Thankyou that it seems as if her other organsa re not affected. Thankyou that people have got better from this before and treatments exist. Thankyou that we have doctors who can do all this.

Ahem.

I'm coming up to some 'please's now, did you guess?

Please can we have Katy getting better in an uneventful sort of way? Please no more complications, side effects or further disaster or distress? It's funny that in the light of drugs that might poison her or make her go blind, another operation seems preferable, when a few short months ago it seemed the last resort. Now I feel as if I just want this lump excised, efficiently this time, and with an appropriate margin, causing no lasting damage and minimal scarring.  The dressing changes scare me quite a lot, but even so...


Just make her better, Father. Give the doctors wisdom, confidence and skill. Give them compassion on a little girl who is only four and afraid of pain, sticking plasters, needles and nurses. Give them compassion on a Mummy who loves her little girl to the end of the world and who would do anything to keep her little girl from being afraid.

I'm hoping that this might be dealt with before her start at Big School in September, though I really haven't got an idea if that might be the case. It might be that they convince us that the drug therapy is the best bet and so we just plod on. Still too many unknowns for me to feel peaceful though it is a huge relief to know which little brute of a bacterium has been making our lives so miserable for the last four months.

Lord, thankyou for some progress.  Thankyou that Katy is so brave and that I have been surrounded by wonderful people at church and home who have prayed, chatted, hugged and prayed some more. Thankyou that you do listen to me even when I go on and on and get boring. Thankyou that you care about us and will never let us down.

Stay with us on this one a bit longer. Could do with a bit more of you, please. 

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