Return to Alder Hey
 

Return to Alder Hey

Feb 7 2011

After just a week at home we were heading back up to Alder Hey, just over three months since we saw our little girl battle through the recovery of two major brain tumour resections.

We actually travelled up on Wednesday for a 4.00pm admission, knowing that she was going to be operated on the following day. I had again tried to squeeze some work in during the early part of the week and fortunately my client that I had a meeting with on Tuesday were well aware of our situation and have been very understanding of my movements. That really helps; you'd be surprised the people that struggle to realise that my mind is not fully focused on business processes.

So, Wednesday morning we got Lucia off to school and head off mid-morning to travel the 250 miles up to Liverpool. Lucia has stayed at home with my parents for these few days so that she too can get as much school in as possible before we go back out to the US. Hayley drove the most part of the journey this time and although she is a really good driver I am a terrible passenger and throughout the journey I was on high alert for the brace position. I think it is compounded by Hayley's tendancy to brake a second or two after I would so that when the traffic comes to a standstill, we are a metre or two further forward than I am. The truth is, there is  probably no difference at all and it's just my lack of control that is bothering me.

We arrived in Liverpool in good time and made our way to admissions. Hayley was terribly nervous about being back there, the constant thought of us taking a major step back was playing on her mind. I don't think the nervous feelings lasted too long as the nurses on the ward immediately put as at ease, welcoming us like old friends. Mr Mallucci soon visited the ward to catch up with us and invited us to his office to discuss the situation using the scans taken in Jacksonville to explain in more detail.

Hayley has still been unable to look at a scan and it is probably as much of a superstitious thing now as anything else, but with the screen tilted we looked at what Dr Indelicato had flagged whilst doing his preparations a week or so before. The scan showed a small lump of tumour sitting in front of the brain stem on the opposite side of where Mr Mallucci had gone in on the first two operations. It was small yet big enough to make Proton Therapy either useless or certainly dangerous to her nerves in that proximity. Strangely the cuff of tumour that Mr Mallucci had left before wasn't lighting up on the scan really at all.

Mr Mallucci had been debating with himself for the whole two weeks about how he was going to tackle this operation; his initial thoughts were to go back through the old scar on the back of the head, take a look at the original cuff and then go round the brain stem and artery to the tumour flagged on the scan. In the end, a day before we arrived, he had awoken with a start at 5.30am seeing clearly that it needed a new approach and to go in from the opposite side around the temple.

I think it is fair to say that we were a little disappointed that the old residual tumour may not even be looked at using this approach, given what we know about the event-free survival statistics resulting from a total resection. However, given the argument, it would have been too risky for Mr Mallucci to go any other way and foolish of us to insist against his better judgement.

So there it was, the following day Camille was going back to theatre. One thing that was playing on my mind after seeing the scan, was whether this was new tumour or not. Certainly looking back at the old scan in October, there was something there, but it wasn't clear. This time it was clearer but we later found out that it was damaged/affected by the chemotherapy which suggests that it was there for some time and it had just become more "evident" in the weeks and months we sat at home twiddling our thumbs, waiting for the Proton Therapy to be agreed.

 Early the next morning, our favourite theatre manager, Steve, came over to the ward to ready us before going down. Camille is now becoming very aware of what is going on and for the past few days had been pleading to Hayley that "I don't another operation tomorrow Mummy". The last time she went down to the anaethetists pre-op room she was terrified. With this in mind they gave her a little sniffter of something to make her a bit happy before she went down. Camille had been asking for a present as well so we asked Steve whether it is acceptable to pop into Liverpool while she is in the operation to get her something; Steve was very reassuring and took our numbers again so that he could speak with us directly and not have to go through the ward.

Camille went down more relaxed than last time and after she was put under the anaesthetic, Hayley and I went to clear the room and have a cup of tea before going to get Camille's presents (or "prezzies" if you are in Liverpool). It wasn't long before we were back in the room at McDonald house assuming our normal position, me lying on one bed trying unsuccessfully to read a book with Hayley on the other disinterested in who Jordan has split up with this week.

Steve called at about 11.45am to say that Mr Mallucci had only just started so not to worry and that he would give us another call at 3.00pm ish. The time ticked on and it was about 4.30pm when Mr Mallucci finished the operation and sent her in for the intra-operative MRI scan. This process in itself takes over an hour and then she needed to be sewed up before going to recovery. It was about 6.30pm before we got the call from Ben on the ward to say Mr Mallucci had finished and we could head over. Once again we received good news from him that the operation was a success. This time he showed me the scan as well and as far as any of us could see, there was no tumour lighting up, in effect, it was a clear scan. It was the first time that I'd seen an intra-operative MRI scan and it was a a little strange seeing Camille "opened up". I commented on it and Mr Mallucci agreed  that it wasn't one for the faint hearted, nodding in Hayley's direction.

So there it was, another successful operation, another reason to be grateful to the team at Alder Hey. We are now a few days into Camille's recovery and although she is understandably grumpy, she is actually quite well and not far from being allowed home. We have queried when we will be allowed to fly back out to the US and as long as a CT scan shows that there is no trapped air in her head (that would expand under cabin pressure) we should be clear to go. Hayley was going to mention the trapped air she had after her c-sections, but thought better of it.

Finally, we happened to be watching the rugby on Friday night when Stefano, our other favourite Liverpool based neurosurgeon, came to see us on his way home. He mentioned that Mr Mallucci had played a very high standard of rugby in Italy a number of years ago. I will say no more.

Yours sincerely,

Mr Inferiority-Complex