Jul 18 2009

On Wednesday afternoon the phone rang to say that once again Camille was on the emergency surgery list for the following day, so once again we were requested to attend Addenbrookes for 8.00am the following day. As with the previous appointment, Camille had to be Nil by Mouth from 2.00am onwards.

We arrived at the Pediatric Day Unit just after 8.00am and were the first through the doors, which we were really encouraged by. Within half an hour, Camille had been weighed, and had her vitals checked as well as visited by an Anaesthetist ready for the Hickman Line.

From then on we waited and waited for surgical staff to come down to get us. Our little girl was so hungry, but despite this she was having her brightest, happiest day for a long time, certainly before she fell ill. It was gone 13.00pm when the surgeon finally came down to get the signature on the consent form, and soon enough we were being taken down to the pediatric theatres to once again put our two year old into surgery.

There are certain things that a parent should never get use to and watching your young child get put to sleep is one of them. A week ago, Hayley had Camille sat on her lap while the team sent her to sleep through a gas mask held over her traumatised face. This time, it was Hayley who had to sit in front of Camille through the wrestle that takes place when the gas mask is placed over her nose and mouth. Needless to say, Hayley will also be haunted now by the sight of her little girl struggling to wriggle away from the mask. I am hoping that we won't have to put her through that again for some time, however, next time it is done is likely to be the time that the Neurosurgical team tackle the tumour itself.

We've been used to waiting an hour or two longer than we have been told for Camille to come out of theatre, so we were surprised and pleased to have the beeper sound soon after the scheduled completion time. We once again, rushed to the recovery area to see how she was doing, this time was different. With the previous two operations, Camille had been in a peaceful state when we arrived to recovery, gladly accepting a dummy for comfort and just wanting her mummy to lay alongside her in the bed. When we arrived at the pediatric recovery area, I caught a glimpse through the curtain of a child rolling around the bed in some discomfort. Camille was obviously in a little pain, but it wasn't clear that the recovery team really understood this. It was down to Hayley's request that additional pain relief was given, and after twenty minutes of so, she began to calm, and could rest. The operation was to insert a permanent line into her jugular ; any residual pain from the operation must have been pretty hard for a two year old to take on waking up from a sleep.

We got back down to the PDU at 16:00pm, by 18:00pm we were able to go. We were due back at the hospital first thing in the morning so rather than messing Lucia, our elder daughter about; we decided to pop into my parents to wish her goodnight and give her a kiss and a cuddle. It's been really difficult to ensure that Lucia is getting a fair hand through all of this. We've endeavoured to give her some normality by letting her stay with my parents alone, and they have been really good driving her to the hospital to see us pretty much everyday we had been there. The only real difficulty is when we get home with her and Camille for a few days. Grandparents spoil their Grandchildren, and what we get with Lucia is a far more testing little girl, who wants and expects the world in return for sharp requests. It takes at least a week to undo the good work that my parents achieve with her. Don't get me wrong, we are eternally grateful; they are the most consistent people in the world, and they will give her as much attention as she needs.

The following day was an easy day in comparison. The only thing that needed doing was a kidney function test. It does last about four hours but allowed Camille to eat, and that was enough to keep her happy throughout the day. The test is to see how quickly the kidneys can clear the chemotherapy drugs; this is used to determine the quantities that they will give her over the coming year. They inject a small amount of radioactive fluid into her vein and then take blood two, three and four hours afterwards to test how much is still present. They did tell us that she wouldn't be affected by it, but I was surprised to see the nurse get a Geiger Counter out to check for over exposure to the radiation.

The previous morning we had a received a letter from our Oncology Consultant to document our conversation from two days earlier. It did state accurately what he had discussed with us on Tuesday, but seeing it in black and white, with the terms "extremely difficult" and "inoperable at this stage" being used, left a nagging fear in Hayley. She had quite a tearful day as the reality of the situation ate into her once again. Fortunately, we were able to have another meeting with our Consultant towards the end of the day. It was fortunate because he managed once again to give us the confidence boost we, especially Hayley, needed.

I didn't help things today either. Hayley went to our local supermarket earlier with Lucia and ran into the Radiographer who reviewed Camille's original MRI scan. When she told me she had seen him, I stupidly let slip something he had said to me the previous week at the local hospital. I won't divulge what he had said, but needless to say, even with the more positive conversations we have had in the previous week, it wasn't a clever thing to tell her. I feel awful; understandably, Hayley has struggled through the last few weeks, keeping as strong a front as possible. Slices of information like this do not help her at all, and for me I need to keep my awareness of things that will knock her back emotionally. After two or so days after we found out about Camille's condition, I decided that I needed to be the strong one, to be the soundboard that filters information into a palatable state, so that Hayley too can be strong for Camille. I need to be more aware, maybe one day we can talk about these things more openly; now is not the time.