Black Lace and Promises

For days I kept wondering when the lady with the trolley was coming with supper. It slowly dawned on me that I am now the lady with supper and I needed to get back in the kitchen if we were going to eat anything that doesn't come out of a tin. Actually, that is a bit mean. The Husband also knows where the freezer is. I couldn't resist a smile (or was it a smirk?) when Number Three said: "The best thing about having you home Mummy, is that we don't have to put up with Dad's rubbish cooking any more..."

Home At last

I am writing this at my kitchen table.

It's been a funny old day. In fact it has been a funny old month. It is exactly four weeks ago today that Madam and I were whisked off to live in the concrete jungle that is the John Radcliffe Hotel in Oxford.

This morning we were told that all being well, we would be liberated this afternoon.

NEWSFLASH!!!

Brace yourselves... they've got it!

Madam has systemic JIA - Juvenile Idiopathic Arthritis.

Tonight we are back on a drip to receive a massive dose of steroid. Tomorrow we will begin a six week course of oral steroid which should bring down the joint swelling, diminish the pain and settle the fevers.

It is such a relief to finally have a diagnosis and to learn that her condition is treatable and manageable.

But best of all, it means we are coming home...

The Kindness of Strangers...

Saturday was quiet, broken by a visit from The Husband and the boys. Otherwise it was unremarkable, still no fevers. In fact Madam spent a lot of it sleeping. Although she was obviously greatly improved - the rash had disappeared and the joint swelling was going down - but I couldn't get too excited. She still seemed so fragile and as the Cardiac Consultant said, "we've been here before..."

Sure enough, she woke on Sunday morning with a temperature. By mid-afternoon, after a visit from my parents which she slept through, the fever had spiked again. With Monday's ward rounds, the investigations into the ULI resumed and this week we are mostly proceeding down the rheumatological route. Low grade fevers continued. More bloods were taken. The hunt continues...

I was invited to have an aromatherapy massage on Monday afternoon, laid on by Rosie's Rainbow  Fund - a charity set up by the family of Rosie Mayling. Rosie had spent several months at the John Radcliffe suffering from vasculitis, before she tragically died at home from a fatal pulmonary haemorrhage a week after being discharged. The fund provides all manner of support to children and their families who have to undergo lengthy hospital stays and it seems Madam and I fall into that category.

And if that wasn't lovely enough, today a complete stranger gave me five cigarettes today when she saw I had run out. I had been saving my last cigarette as long as I could before reinforcements arrived with supplies at tea time. I decided that I would not smoke it until there was an emergency. When I woke this morning and went to make my first illicit coffee of the day, the lights on the machine did not come on. Quelle horreur, the fuse had gone. Actually, I didn't say it in French. It was definitely an emergency.

So I went downstairs to the ground floor lobby, only to find that the cafe was not yet open and I had to buy a revolting nescafe out of a machine with my last bit of change. I sat on my favourite bench and lit the cigarette. It was heavenly, but zut alors! (I didn't say that bit in French either), I knocked the lit end into the rubbish bin, which immediately caught fire. Smoke began to billow forth so I was forced to throw my coffee into the bin to put out the blaze. And in the process I dropped what was left of my last cigarette into a puddle. And I certainly didn't say "Oops" in French.