Sir Mallucci

Oct 24 2010

Following the second operation we found that Camille had to go through many of the same challenges that she faced after her initial surgery. She didn’t seem in as much pain this time but certainly the control of her right eye, the affect of the anaesthetic and the constant itchiness of the healing scar were enough to make her week an unpleasant one.

Since Camille has been up in Liverpool she has become quite cross, generally when she wants something or she is trying to tell us something and we don’t understand what she is asking for. I’m not sure if her voice has changed or whether she is not as clear now as she was before; it certainly isn’t obvious to me if it has changed in any way. It is possible that she is not as clear now as prior to surgery as the central nerves that had tumour scraped off them included the nerve that control her vocal chords. The nerve is intact and speaking at all is a great sign but it was battered and bruised from the pressure of the tumour and the aggressive requirement from surgery so like any bruise, it needs time to heal and strengthen up again. The same applies to her right eye; she may always have a slight turn to that eye, but we do expect it to improve over time and in a few months it will have settled to whatever the normal situation will become for Camille.


There isn’t a huge issue with Camille getting so frustrated that all she can do is scream and cry as I expect that she’ll be a lot better when she’s able to walk again. At the moment she has to ask for everything and because she’s still a very little girl she doesn’t always describe what she wants in a lot detail. I believe the ability to walk will help her no end and I really don’t think it will be that long before she is more mobile again.  She will take a long while to become up to speed with other children her age if she ever does, but confidence walking is stage one and if there’s one thing we have learnt it is to focus on the current challenge now and not to think too far in advance.


It wasn’t many days after surgery this time that we managed to get Camille out and about from the ward, going to the canteen or even out and about around Liverpool. On Monday we took Camille to the canteen where Heston Blumenthal was filming a Channel 4 documentary. We would have loved to spoke to him as he recently declined to help Camille’s Appeal, but he was busy looking at his phone in the kitchen working hard not to make eye contact with the locals. Celebrities in Ipswich are few and far between, but being based at Alder Hey opened the door to a new world. Between us and our friends we had now seen Sinbad from Brookside, Colleen Rooney, Heston and later in the week, Hayley spotted Grace and Mikey from Big Brother discussing the virtues of cleaning products in Sainsbury’s. I’m not too ashamed to say that we did celebrity stalk them and parked up and waited for them to leave as I was desperately trying to guess who Hayley had spotted using only Yes or No answers for clues.


When we got to Friday it was time to go home, finally after three and a half weeks up North. It was such a relief to be able to leave and try to get back to normality. Camille had been ready to go for many days and Lucia was really missing us all at home. The time came to say goodbye to Mr Mallucci as he came to see us for the final time before his annual leave and our departure. Hayley had done the womanly thing and purchased thank you gifts for all the key staff that were instrumental in Camille’s care. As she handed Mr Mallucci his gift she followed in for a smacker leaving all women folk in a six mile radius baying for blood. As she withdrew from the Irish/Italian embrace I noticed Mr Mallucci extend a hand in my direction. As I rose from my seat to be courteous and meet him in a standing position for the handshake, he wrapped the arm around my back and finished the movement in an almost exact hug that my wife had enjoyed just moments before. I will admit that I felt slightly uncomfortable and embarrassed as I remained stuck in a squatting position, half standing and half sitting as our daughter’s neurosurgeon finished his continental farewell.  That didn’t do a lot for my man crush I must say.


We managed to get home just in time to pick Lucia up from school. I was so pleased to be able to see her smile appear on her face as she spotted us in the playground. This stay at Alder Hey has been hard for Lucia who really just wants her mummy and daddy to be there. She also missed Camille desperately; they are best friends and without Camille around she must have felt incomplete. I will say how thankful we are to Hayley’s sister and family who stayed with Lucia at our house. They made a lovely home environment for Lucia to come home to each night.


Making it back on Friday also enabled the girls to go to Disney on Ice at the O2 which had been organised before we knew about the operation. Although we had an awful eating experience at the Bar and Grill on the left as you enter the dome, they all seemed to enjoy the show. I too enjoyed sitting in the bar watching the football while they were in there, even if it did make the journey home somewhat painful.


So now we can draw a pencil line underneath the Alder Hey experience. We can now take stock of what happened over those few weeks and we certainly learnt a lot from that time in Liverpool:

  • I can safely say that we have had another great experience of the NHS and what is made possible for us all. I don’t know where we would be without it.
  • Camille has once again proved that she is incredibly robust and an incredible inspiration to me and Hayley. Without her strength we would not be able to deal with this situation as we do.
  • Liverpool is actually a wonderful place to go to. It gets a really bad reputation but the centre of the city is great and a place that I will always rave about.
  • Although there is a higher level of tracksuit bottoms per person there than down here, there are some people in Liverpool who don’t own a single pair!


There are also of course the great team at Alder Hey who we will always be grateful to:

Mr Mallucci – I do jest about the man crush thing but he is seriously a hero to me. There are celebrities year on year that get MBE’s or more for being famous for a long time. What Mr Mallucci did for Camille is beyond anything these people could imagine; he defied the likely outcome and delivered a surgical procedure over fifteen or sixteen hours that his colleagues and peers had not considered possible. He said that he hadn’t seen a more complicated case than Camille’s and she is now asleep in our house very close to being the same little girl that walked into that ward at the end of September.

Stefano – Mr Mallucci’s able understudy was also there throughout Camille’s operations and was always on the ward to offer a reassuring hand whenever we needed one. Stefano is on a placement from Italy and is putting all of his effort into his work while he has the opportunity to work under such a celebrated neurosurgeon. Stefano is loved by the nursing staff as he will make cups of tea or helps with photocopying whilst also being a very talented surgeon in the making.

Pat – The play lady on the ward in Alder Hey is Pat, or “Mad” Pat as Camille liked to call her. Camille was in awe of her and would watch the corridor for her appearing to play with her. My memory of Pat will be her wallowing on the water mattress in the sensory room.

Steve – Steve was the theatre manager and would be the person who called us to let us know how surgery was going. He too was very kind and so pleased to see how well Camille was doing every time he ventured onto the ward.


We now begin the process of planning the next stage of treatment. There are two clinical trials open at the moment for children in Camille’s exact position so it will be interesting to know the opinions of both Addenbrooke’s and Alder Hey as to what is the best course of action. We still have a long way to go and although Mr Mallucci managed to clear 99% of the tumour, there is still tumour and it only takes one cell to carry on its life cycle. Hayley is taking Camille to Addenbrooke’s this week to take her stitches out; at the same time she will speak with Amos and start this process formally.


Finally, one of Hayley’s friends, Claire Allan has just released her latest novel “It has to be perfect”. Claire has included Camille, Lucia and Hayley as characters in the book after someone donated a large sum of money to Camille’s Appeal for the mention. If you get a chance and fancy a book to read, please buy it as Claire has been a great supporter of us and the charity and it immortalises all of my girls forever. I’d also like to send congratulations to my cousin who has just become a father for the first time to a little girl; little girls are special, I should know, I have two amazing angels.