Finally, we managed to have a weekend with just us, as a family. Every weekend since Camille’s diagnosis has resulted in either a trip to the Paediatric Day Unit or a multiple night stay in the ward due to an infection. Camille was lovely all weekend, she was pretty much her old self, laughing, smiling and playing with her sister; if it wasn’t for the NG tube coming out of her nose you probably wouldn’t be able to tell that she was ill. She still isn’t walking but just having our happy little girl back was priceless for both Hayley and I.

To make the most of it we ventured out for a couple of trips, one to Felixstowe beach and the other to Africa Alive zoo near Lowestoft. Wherever we go now, people do stare a little at Camille but that doesn’t bother me. Other children are the most humorous; their parents will glance a look before quickly looking at the clouds or their shoelaces, but the children just stand there and stare.

We really hoped that we could have a weekend with no incident and a happy girl because we knew that she was back to Addenbrookes on Tuesday for a further operation to insert the new Hickman Line and to commence with the second dose of chemotherapy. The likelihood is that the chemotherapy will knock her for six again and we wouldn’t see this bright and happy Camille for some time.

We did have to pop in to Ipswich Hospital on Monday to get some bloods done and Camille had been practicing and practicing her new greeting for when she saw Mary, the Community Sister looking after us. Camille thrusts her arm out at a right-angle to her body, and when you shake her hand she says “please to meet you” or in Camille talk, it is more like “meesed to meet you”. So the time came, Mary walked in, Camille said nothing. Close but no cigar.

Lucia went to my parents on Monday afternoon, which should be for her longest stay. I’m planning on spending a couple of nights at their house so she’ll get to see me away from the hospital at least. After Lucia had gone, Camille had her dinner, and after polishing off a heavy Milky bar Mousse, she vomited it all up. She’s supposed to feel sick after chemotherapy, but after a chocolate mousse is going a step too far.

Over the weekend I spent a good deal of time with the help of some other people, searching the internet for pioneering medicine that could offer us a plan B or C if the standard chemotherapy protocol does not yield the result we are looking for. I went into Addenbrookes today with a list of potential phase 3 treatments that could help clear any residual tumour when we get to that stage.

Camille went up to theatre for another general anaesthetic and the new Hickman Line at about 11.00am and after an hour and an Angry Whopper (Addenbrookes has a Burger King if you had wondered); we were paged to go up to recovery. Camille was far more settled than the last time she had this operation, so while she dozed on the bed, Hayley and I pondered the potential conversation we were going to have with Dr Burke the Oncology Consultant. It was interesting from the research I had done, that most new techniques are based around Radiotherapy and obviously from the USA. It also seems that the Americans don’t seem to put a lot of effort into chemotherapy treatments, all I could assume is that the Americans have no desire to wait a year for a result when the can just blast the crap out of it.

Camille recovered reasonably well and spent the rest of the afternoon watching her mini-DVD player from the comfort of her “bug-bug” (buggy). Just as Hayley and I began to relax, Dr Burke appeared to hear what our research had yielded. In all fairness to him, he did stand there and listen, but by the time we got to Intrabeam and Endoscopic Endonasal Approach surgery you could see he was losing the will to live. Dr Burke is very good at settling us down, and within minutes he had managed to guide us to the conclusion that he has multiple plans and multiple options to draw from. He did suggest that it is still worthwhile looking but to use him as a soundboard for any ideas.

Camille is now asleep, and overnight she will begin hydration before the High Dose Methotrexate tomorrow.