"I won't be in today. I'm waiting on either bad news or terrible news"

Today we would find out if Ciara had Veno Occlusive Disease or whether the Neuroblastoma had returned. The wait for Ciara's consultant to come round this morning seemed like a year. We were due to go and talk to someone this morning about Radiotherapy but that has been put on hold, pending a talk from the consultant. She arrived at 11am, and already her language was starting to change; with talk of "making Ciara comfortable", and still using radiotherapy to "slow things down". But before she could say for certain that it was Neuroblastoma, we needed the results of the urine tests. After the night we'd had, this seemed like just a technicality, and reminiscent of a time back in March when we waited for urine results to confirm that our world had been turned upside down.

At about 4.30pm, after a long day of pacing, the urine catecholamines results came in, this time delivered by Ciara's other consultant. Contrary to what Yvonne and myself had led ourselves to believe, they were lower, i.e. better. This doesn't rule out Neuroblastoma, but it does indicate that it's now unlikely to be the cause of the liver swelling. She's still not classic VOD though - she will be screened for other problems, such as fungal infections or hepatitis type diseases - but for now treatment will continue for VOD, with continuing defibrotide and increased diuretics to release some of the fluid build up. Next week she'll have a CT scan to try and work out what the pains in her legs are. We knew that there is still Neuroblastoma left, and she'll be having an MIBG soon to map where, but it seems that there is no rampant return of the cancer.

So, we make it through another day. This is not really a huge "phew" moment, but it's not the end of the world. The pains in her legs are still a concern, but no more than they were a few weeks ago. I have no doubt in my mind that if the catecholamine levels where up, we would have had the "getting our affairs in order" talk. While VOD is still very serious, and potentially fatal, the glimmer of hope has returned again. To quote oneself from May 28th: "Only this morning, in a very glum moment, we were talking about making the most of the time we have. Now we can hope for a future again. Thank God."