We still await an answer from the Proton Therapy panel, it’s now been over two weeks (their normal target time) and we have not heard a whisper from them. Addenbrooke’s still seem pretty negative and do not seem to give us much chance of being accepted; this negativity is almost harder to deal with than an actual “No” answer. Addenbrooke’s have never had a patient go for Proton Therapy and the lack of knowledge of the process has resulted in them being extremely cautious, which doesn’t go anywhere towards settling Hayley or I down. Although we know of many children who have been accepted in worse situations that Camille, in terms of residual tumour remaining; we are constantly feeling now that we haven’t got a hope and that we will end up having to fight tooth and nail to get Camille accepted, or find the £150,000 to send her ourselves.

 

It’s a cold and faceless process applying for Proton Therapy. You do not apply for it; the referral comes from your consultant. Even our consultant, Amos, only has a postal or e-mail address to send the application to. Amos has no idea who out of the panel answers the application so no personal approaches can be made. The process allows for the panel to be clinical and cold about their answer and also not have to be subject to any interrogation. Well, if Camille is rejected for funding we are going to want to know why and have some dialogue as to the reasons. My opinion is that if the NHS are willing to give her standard radiotherapy, she should automatically be given Proton Therapy without question. My daughters physical and mental health does not come down to money, and that is the only reason she could get a “No” answer.

 

As I’m sure you can tell, the last few weeks have been pretty stressful, running through many different scenarios, searching tirelessly for hints, clues or alternatives for Camille’s next stage. Hayley is stressed beyond belief deep down, she is hounding Addenbrooke’s to do more, combing Ependymoma forums for answers and looking for any little nugget to give Camille that edge. I’ve got more patience at this stage, as although an answer is imminent, we have the luxury of time that chemotherapy will buy us. A round or two (maybe even three) of Etoposide will potentially do one of a number of things; it may reduce the tumour some more, it may give the already dead cells time to clear from a scan or it will give us the opportunity to seek an alternative answer.

 

Hayley’s mum has now been with us for a full week and is doing pretty well at controlling her blood levels from the diabetes that had her in hospital just a couple of weeks ago. It’s been twenty years that they have caused her so many problems; it’s time they got sorted out once and for all. The good news is she seems to be getting more consistent. Having an extra body in the house has also had other benefits: we are never out when a parcel is delivered, we have someone to sit with Camille when Hayley takes Lucia to school and the garments ironed per day ratio is well above ten (sorry John, I know I used that in my e-mail earlier); although her irons per week ratio is sitting at three after ours blew up and then our next door neighbours iron also took a turn for the worst after we borrowed it to iron a shirt. Lynn is worried that it is something she has done, but seriously, I reckon you could try for ages to break an iron without succeeding; it’s just really rubbish luck. You watch, she’ll be outed in the next few weeks as the Electric Pulse Woman of Suffolk.

 

Another benefit of having another adult in the house is that we now have a built in babysitter for a few weeks. On Friday night we had a Christmas Ball to go to in aid of CLIC Sargeant. It was organised by our friends Elaine and Steve and was a thoroughly good night. Elaine had been worried sick about people not turning up, but when the Hog Roast was laid out ready to be carved the line was so long that even the pig looked worried. We left quite early to get home to Camille but it looked like everyone had a great time, well done the two of you.

 

I’ve been away for a night this week in Manchester and while I was up there, Hayley took Camille for another eye test. It was quite upsetting as Camille’s right eye has gone downhill a bit and not really working. This was always a danger after the operation but to hear it made it all the more real. Camille has now had to where an eye patch over her good left eye for a few days to try to spur the right eye into action. She’s struggling; she tries every way to sneak a peek under or round the eye patch with her good eye so that she can see something. I’m not sure how much she can see out of the right eye at all. As time goes on from the operation and all the treatment she has had over the last eighteen months, the lasting affects are starting to show, however, we could be in a lot worse position right now.

 

The week was topped off when on Saturday morning a 36.5 temperature became 37.1, which in turn became 37.7 and then tipped over 38.0. Lucia had been ill during the week with a high temperature and Hayley was already in bed feeling really grotty, so I rushed Camille off to Ipswich Hospital expecting the normal 48 hour stint on antibiotics. Camille and Hayley are still there but she is OK. Her immune system has held up and it is purely a precautionary stay. They’ll be home in the morning and ready for Camille’s last week of her first spell back on chemotherapy.