There's One With A Clown On It

Nov 22 2009

Patience is a gift that Hayley and I are not blessed with at the best of times. However, waiting for the results of an MRI scan add an extra level of urgency.....

Patience is a gift that Hayley and I are not blessed with at the best of times. However, waiting for the results of an MRI scan add an extra level of urgency and Addenbrooke's request to wait until Tuesday to discuss the results face to face was always going to challenge us beyond our abilities.

Monday was spent pacing the kitchen, knowing that Addenbrookes knew the results and that we had a one whole sleep until finding out ourselves. By tea time we buckled and put a call into Ali, our specialist nurse. The tumour had remained pretty much unchanged on the scan, which again was a positive for Amos who was expecting little movement until six months minimum.

The truth be known, Hayley and I were expecting more as Camille is improving by the week and we just couldn't see how the Tumour could still be the same. I think I understand now that it's not as simple as it just shrinking; imagine a massive Jenga game, you can take blocks from anywhere in the structure and although it is the same size, the structure itself becomes weaker the more blocks are taken away.

We had a meeting with Amos at Ipswich on Thursday on his four-monthly visit to the local hospital. It was quite humorous as he walked through the busy waiting room. Most of the patients there had completed their treatments are were there for a review; Amos himself was clearly top of their Christmas Card lists. As Amos slinked through the door the general rhubarb turned into an excited hubbub as he waved and smiled at the eagerly waiting families. Even I felt a little bit special as he spoke actual words to us as he walked through. The meeting allowed us to ask a few questions, but it was Amos' delight at Camille's physical state that was the biggest reassurance to me.

Earlier, we had Katie the Physiotherapist visit our house to assess what we could use to aid Camille's rehabilitation. The key thing for us is still getting her back walking again unaided. She desperately wants to be walking all the time, but with Hayley and I having to hold her hands all the time it becomes impractical . Physio have provided her with a frame to try which we need to try and get her used to over the next week. At this time, she is getting more use to it being around, but is still boycotting the actual use of the thing. I think Hayley found it quite upsetting having what looks like a miniature Zimmer frame as a part of our lives; it's quite understandable as it makes you realise where we are, but it is a means to an end.

We are now only a few weeks away from the Camille's Appeal Christmas Ball and Auction; on Thursday night the phone rang, "Hi, it's Mum", Patsy chirped. She went on to talk about a call she had received from her cousin Rachel, about her nephew living in the US. "A package has arrived with three prints in it, you see he owns an art gallery" Patsy continued. Now my mother is not exactly Saatchi and it took a further reference call to Rachel to find a little more detail about the donation to the auction. "One's a Picasso......" she began. Whooaahhh there Patsy "One's a what? What an original?" I probed. "Oh I don't know, but one of the others has got a clown on it". She gave me the details of Baterby's , the gallery in the US that my relative owns. After a small amount of research into his website, I've come to the following conclusions: He doesn't have copies, He doesn't sell cheap and he raises an amazing amount of money for charities each year. We don't get the items until next week, but needless to say I am slightly moist with anticipation.

Camille hasn't been sleeping very well at all and Thursday and Friday nights resulted in three hours of sleep for Hayley and I over the two nights. Luckily she slept all night last night, but I am a little concerned going into the working week once again.

As Saturday arrived we were all shattered, just as we settled in to twenty minutes of Strictly before the girls bedtime disaster struck. Lucia and Camille were fighting over the Argos book to choose their Christmas presents; I decided to prevent blood shed and grabbed the catalogue out of their way only to take Camille's NG tube with it. I looked down as Camille screamed and Lucia cried. I had to take Camille for a quick trip to hospital to get a new tube put in, but nevertheless, I felt a real idiot for putting her through that.

Finally, we decided to take the girls to watch Fantastic Mr Fox at the cinema today. I was really getting into the film (which by the way, has some really adult tones) when Camille broke down and wanted to leave. As I lifted Camille from Hayley's lap and headed for the door, the cogs in Lucia's head clunked into position as she realised that perhaps she wanted to go as well. We left after only 25 minutes, a thoroughly good use of £20.

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