Catch 22

Nov 14 2010

Without having heard anything of any note from Addenbrooke’s since we returned from Alder Hey, we had no clue as to whether the application for Proton Therapy had gone off to the NHS Proton Therapy panel. As far as we were aware, this was the next stage of Camille’s treatment and we were led to believe that Camille was pretty much a certainty to be accepted and treated in the US.

Things can change pretty quickly when you have a child with cancer; by Monday we were starting to think that we may get an answer at any time, it has been nearly a month since we returned from Alder Hey and we had expected Addenbrooke’s to have submitted the referral for Protons. I’d scoured the internet for official information on the treatment and stumbled across the NHS Specialist Services website containing the terms of reference and application information on Proton Therapy. The documentation indicated that an answer is normally given within ten working days of the referral; an answer could be with us at any time.


While we waited, Hayley and I were getting more and more frustrated with the lack of communication from Cambridge. We had been told not to feed Camille orally as she hadn’t had a swallow test, but no one had arranged a swallow test. Her eye had not been checked in Cambridge and it had begun to look very bloodshot and sore ever since the impetigo. It’s funny that when you start to focus on something, all of a sudden things begin to happen. This was the case on Tuesday when the phone rang at 7.30pm and it was Harry, our specialist nurse at Addenbrooke’s. It was just a check up call but after I had spent a few minutes on the line with her, Hayley took over and explained exactly how we were feeling and how disappointed we were. Harry wasn’t aware of how the application was going but promised that she would follow up with Amos who we were due to see on Thursday.


Thursday came and we travelled the short distance to Ipswich hospital where Amos was having his periodic clinic with the local consultant. This was the first time I had seen Amos and the first time we had both seen him since he has had an opportunity to go through the thousands of scans from Alder Hey. The actual words that Amos used to describe the surgery were up for debate; I remember him saying “remarkable”, Hayley remembers “brilliant”. Either way, what we already knew about Mr Mallucci’s work was being reinforced by Amos. The conversation seemed to go in an entirely predictable fashion as after the positive superlatives followed a “but”. Amos indicated that he had heard noises that Camille may not be accepted for Proton Therapy. After drilling into what he had actually heard and who from, it turns out that these “noises” were not from the Proton Therapy panel themselves and has very little bearing on whether we are accepted or not, but nevertheless, it was a conversation that was going to lower our expectations for the next few weeks. We asked what would be the next stage if a negative answer was given; all Amos could say was that Camille would have Proton Therapy but it would require personal financing, a bill of approximately £150,000.


It takes quite a bit of detail to understand why the panel may turn Camille down; after all, she is in the perfect age group and has a tumour that is on the list of accepted illnesses for the treatment. The complication with Camille revolves around the 2% of tumour (or 2cm³) remaining after the operation. Proton Therapy clinical trials have shown that if there is any tumour left when Proton Therapy is given, the likelihood of the tumour not coming back drop from 50-60% down to 0-20%. Therefore, if Camille had Protons with tumour remaining, the chances of the tumour coming back at some point are pretty much a certainty. However, there is some uncertainty as to the volume of tumour that would reduce the percentages down to these levels; no one seems to know how Camille’s remaining tumour will affect these percentages.


It does get even more complex than this; there is a new protocol with radiotherapy that applies a boost of radiation to an area where there is residual tumour. The results from these boosts have been extremely positive and in theory would certainly help increase the chance of Camille’s tumour not returning after treatment. The problem is, as far as we know, this boost has never been given through Proton Therapy although there is no reason why it couldn’t.


So we wait for the panel to return an answer, both Hayley and I unsure what they will say and what is actually the best route forward.  Amos wants to start Camille on chemotherapy again just between now and being ready for radiotherapy/protons. There is some sound theory behind this; if the panel say no we will appeal, but all the time this is happening, Camille will be undergoing chemotherapy that may reduce the remaining tumour, a little or may down to a level that shows a clear scan. The remaining tumour is a cuff around the basilar artery and may well have had its blood supply suppressed from the surgery, in theory chemotherapy can only help this along and kill off some more cells.  Camille will now begin chemotherapy again next week.


Camille did see the eye doctor on Friday and after a review of her bloodshot eye, she was diagnosed as having an infection and now she has to be given eye drops every two hours. If you’ve ever tried to give a three year old eye drops then you will know how traumatic an experience it is. Hayley rightly pointed out this week that it just seems that we are constantly having to do horrible things to her, it almost constitutes torture as she gets so, so upset. I have no idea how she feels towards us when we are pinning her down to peel back her eyelids so that we can apply the eye drops, or how she feels when we are pulling off her dressing around her Hickman line. She hates it and no one will ever convince me that it is fair. She deserves to be happy and not have to worry about what’s coming around the corner.