Fungal The Bogeyman
 

Fungal The Bogeyman

Nov 1 2010

For anyone who has been on a two week holiday and has struggled to get back into work on your return will know a little about what I mean when I say that this week has been a challenge. I’m certainly not comparing our three weeks in Alder Hey to a holiday but the principle of returning to work after a spell away is similar. You know how it is, you blunder aimlessly from meeting to meeting, task to task without really knowing what the goal is, or in our case what the point is. Alder Hey has been a life changing experience for us all and now most other things seem miniscule in comparison.
It was fortunate that our first week back coincided with Lucia’s half-term week so Hayley was going to be able to spend some time with her to at least make up a little lost time from while we were away. Events don’t always work out in our favour though as Camille had to go over to Addenbrooke’s on Monday to have her stitches out under a general anaesthetic. Hayley took Camille over early in the morning and she had been nil by mouth from midnight, but on arrival, a miscommunication somewhere along the line had resulted in the hospital being unprepared for the anaesthetic and it therefore meant that they would have to return the following day. So the first two days of half-term week were spent in hospital once again, this time for very little reason except to extract the stitches at Mr Mallucci had stitched a week or so before. All was not lost as Hayley was able to sit down with Amos for some time to discuss where we are and what the next stage should be. It was always going to be the case that after the major surgery, we would be looking at Proton Therapy as a safer form of radiotherapy for a child of Camille’s age. The process for Proton Therapy is not that simple as we are some years off having a Proton Therapy centre in the UK for brain tumours; this means we are looking at eight to ten weeks away in another country to clear the residual tumour that Camille has been left with. Whilst in Alder Hey we had been throwing the idea about that we would like to go to Switzerland for the treatment rather than the more preferred Florida. The reason for this would be that Lucia and I could school and work during the week and easily pop out to Switzerland for weekends etc whereas it would be impossible to do that in Florida with nine hour flights each way and a cost of £1,000 per return journey. Hayley put this idea to Amos on Monday and although it was a good idea, it wasn’t a viable plan as Switzerland will not offer a general anaesthetic and Camille will need to be under to be still enough for the protons to be affective. So Florida it is then. We’ve now got to go through the formal process of being officially accepted by the NHS. The approval process is relatively simple; the NHS has a panel of three or four senior consultants who specialise in radiotherapy for children’s brain tumours. The panel have an accepted list of brain tumour types which they know have positive results under radiotherapy (of which Proton Therapy falls under), they will accept children in these categories if they meet that requirement and a few others, which in Camille’s case was that she had a full resection. Children meeting the full requirement will then be funded by the NHS to go to Florida for the eight week treatment. So, that’s where we are, waiting patiently for the panel to come back with their answer; we have had a conditional acceptance a while ago that stated that Camille would be able to go if she gets a full resection; we now believe as does Mr Mallucci that she meets this requirement. We are fortunate in many ways that we went to Alder Hey for surgery as one of the panel members is a colleague of Mr Mallucci who will be discussing Camille’s case with him on a regular basis. This also means that we have an open door to her and will be able to find out a lot of information about the process directly from her. So I believe this is the NHS at its best in many ways; although we are a few years from having a centre here, the NHS have done the right thing and waited for clinically trials to be produced on the technology to ensure that the treatment works and that the taxpayers money is only used on useful investments; now we are at the stage where the NHS have recognised the trials are affective and between now and when the centres are built and in working order, they are happy to fund the treatment of children who most need it. That has always been a criticism of the NHS; the US seem to be way ahead in these terms, but on the flip side, the US also has a lot of cowboys working in the medical profession who will charge thousands and thousands for treatments that will probably never work. I prefer the more cautious approach. In the meantime, life doesn’t get any easier for Camille either. On Wednesday morning we noticed that she had been chewing her lips in the night and woke up covered in blood. The same morning she also was complaining of a sore thumb and on inspection it revealed a rather nasty looking blister. She couldn’t have touched anything hot as it happened overnight and she can’t walk at all, so it was a mystery to us where it had come from. So Thursday and Friday mornings followed a similar pattern, the face covered in blood and the blister getting gradually bigger until Saturday morning when we took her to Ipswich Hospital to get her checked over. There was also a patch at the bottom of her scar that she had been scratching which was looking a bit nasty. So I took her over to PAU where the nurse, within seconds of seeing Camille spotted that her face looked like she had Impetigo, a rather infectious fungal problem. We wondered if the now abnormal poisonous looking bobble on her thumb was related to the Impetigo and obviously the patch at the top of her neck. Ipswich spoke with Addenbrooke’s to get their opinion, which was to give her oral antibiotics, but the doctor at Ipswich thought that it looked a more difficult case than standard Impetigo so they wanted to give the antibiotics intravenously and therefore this meant a couple of overnight stays. As the hospital is situated just around the corner, Hayley and Camille managed to get home in between doses which meant that Camille could get dressed up to go trick or treating. It was quite funny with Lucia dressed as a rather pink looking pirate, their cousins Jake dressed as Scooby Doo and Sonny as a rather scary looking spider and Camille taking on the roll of a wise old wizard. We just ventured around our crescent but it was great to see that some households had really put some effort in for the kids; one house in particular was quite dark on the route up the path but as soon as the kids got under the porch area at the front, the lights began to flash and a scary voice boomed out. As the door swung open the kids were faced with some adults dressed in very scary outfits leaving our little monsters as quivering wrecks on the front lawn. Every house after that was approached with trepidation with few thoughts of sweets, just survival. Camille remains in hospital, but hopefully she’ll be allowed out today with possibly just oral antibiotics to clear up the remainder of the infection. You never know, we may get a week to ourselves one day.