Alder Hey had requested that we get Camille’s vocal chords tested prior to the operation as one of the nerves at risk of damage controlled this particular function. This meant that we had to be in Cambridge for 7.30am meaning that we had to leave the house at 6.30am. True to form it was nearly 10.00am by the time Camille was sent up to theatre for the anaesthetic. This procedure is very simple but it does require Camille to be semi asleep so that the chords are able to move; this meant that all she needed was the gas mask to send her off, but Camille is petrified of this approach. It was once again so upsetting to see her claw at her face trying to lever the mask away from her nose and mouth before she finally succumbed and fell under. We were done and on the way home pretty quickly, although we did just have time to pop in to see Amos before we left.
That night we went out for Camille’s cousin’s 1st birthday. As we left to get the girls home it was very emotional as this would be the last time that family members would see Camille before the operation. The seriousness of the next few days had suddenly become very real and Camille’s smiling face was something that they all wanted to savour before we left.
Another early morning saw us travel the 250 miles up to Liverpool and Alder Hey hospital. We were sent straight up to the neuro-surgical wards and given a room for the night. Things seem to move quite quickly at Alder Hey and it didn’t seem long before the anaesthetist and Mr Mallucci arrived in the room. Prior to travelling up to Liverpool, Hayley and I had discussed the approach we wished to take with Camille; get as much as we can out without risking her neurologically. Mr Mallucci sat at the end of the bed and was so confident in his manner and explained so clearly his approach to this complex procedure he was about to undertake. We felt together with Mr Mallucci’s confidence and the way he managed to describe the potential risks in a way that didn’t scare us as much as they had the previous week, we left the decision in his hands with the underlying decision being that radical surgery was going to be the best option for Camille. My Mallucci thought that anything less would be palliative, a word that Hayley and I struggle with.
Camille went into theatre at 8.30am on Thursday. Hayley carried her down the corridors between the ward and the theatres. As we walked in between the blue walls I felt my legs getting heavier and heavier, I thought that at any moment I was about to just stop and not be able to move forward anymore. Camille began to get scared, something that she has never done before. We arrived in the small room next to the theatre, the glow from the theatre emanating through the semi open door. Camille went to sleep at 8.40am and we were shown the door after giving her a kiss on her forehead, like we have done on so many occasions before.
We knew the day was going to be long so we went and got some coffee and took a walk (all though not too far away from base). By the time we arrived back at the room we are staying in at McDonald House the time just ticked past 10.30am. We had been given an indication that she wouldn’t be out of theatre until after 6.00pm so Hayley took a sleeping pill and managed to lose about three hours through sleep as I read the final pages of “A Catcher in the Rye” before dosing off myself for a short while.
We did get a phone call at 3.00pm and 6.00pm from the theatre just to say that everything was going OK and she was still being operated on, but we were just left to stare at the walls waiting for the call to request our attendance in recovery. It’s strange, I always expected the time to be spent anxiously pacing up and down the room, but in fact there was a sense of calm; Hayley and I hardly spoke for the entire period, we just dosed and read. At 8.00pm we decided that we would walk across to the hospital as it couldn’t be long before we were called. The problem was we could only get a mobile signal in the reception area, so that’s where we stayed, digesting all of the graphical representations of a recent survey over and over again.
It was 8.30pm before the phone rang and we were asked to meet Mr Mallucci in the ward. This immediately caused both of our hearts to sink down to the ground. Normally we would go to recovery to see Camille and meet the surgeon there. Our minds were full of dread and we waited for up to 45 minutes on some plastic chairs in the entrance to the ward. All of a sudden the calmness of the day had gone and I paced and sat down, followed by Hayley who paced up and down the laminate floored waiting area. The repetitive drone from the automatic doors drove me insane as I found myself counting and thinking along with the monotonous rhythm. Suddenly Mr Mallucci arrived through the automatic doors looking very tired, hair splayed across his forehead, like he had just arrived back from battle. He sat down on one of the other chairs and immediately told us that he felt the operation had gone well and he had cleared a lot of tumour, managing to maintain all of the major central nerves that we believed would be destroyed from this procedure. This to us was a miracle, he described what he had found when he got inside as a mass of tumour that had splayed all of the nerves all over the area, he had to not only find them all but also ensure he didn’t damage them. The only way we can describe this is as a lump of dough with many strands of hair going through it. It’s almost impossible to imagine how on Earth he could clear this area of tumour without going through these nerves. There was a word of caution, there still remains two areas of tumour that will need further operations to clear, more risk to Camille even though the most difficult area has now been cleared.
Camille was scanned immediately and within the next hour or so we were by her side in intensive care. She was not woken until the following morning so late that night we made our way back to McDonald House to catch forty winks before she was awake and needed us. We arrived back in intensive care for 6.00am and stayed patiently with Camille until the doctors thought it was right to take her ventilation out and let her breath for herself. When she was roused she was very sleepy but uttered a few words and moved her limbs and was breathing for herself; all potential risks from the area that was being operated on. Friday was quite a quiet day as the morphine kept Camille very sleepy. Mr Mallucci was operating again all day on Friday so it wasn’t until Saturday lunch time that we were able to see him and discuss the scans in more detail.
We discussed the scan and it showed a small lump of tumour at the top of her brain stem where Mr Mallucci would have gone on to operate if he had not been so tired on Thursday. This is quite difficult to get to but he can, the obvious issue is that the brain stem feeds the brain with blood and any mistake in that area is fatal. He feels that the best thing for him would be do operate on this lump in a couple of weeks as the channel he made on Thursday would enable him to get through to the area a little easier than normal. The second lump is behind the eyes and wrapped around her pituitary gland. This is again difficult to get to and would require him going in over the eyes. There are blood vessels again up there which are pretty important to preserve but the main risk will be to her vision as the area is riddled with optical nerves. The pituitary gland is likely to be damaged by radiotherapy anyway so he is already planning with another doctor Camille’s hormone production going forward. He feels that he would like to tackle the final lump in a few months time to give her a rest, maybe after Christmas.
Since Camille has been woken she has been extremely quiet and really just staring out into nothingness. We were shocked on Saturday, just prior to Mr Mallucci turning up to see that when she briefly opened her eyes they had completely turned in to her nose. Camille has got the most beautiful eyes and to see them so damaged, darting across her face then resting back in the middle, was simply hard to take. We and the surgeons think that this should be temporary as the nerve was maintained and at least the eye is moving but for the time being she is struggling to focus and getting more and more frustrated. Imagine waking up and not being able to see properly. She’s also in a considerable amount of pain and the poor little girl is at times clawing at the bed and us with an arched back trying to deal with the agony of the scar at the back of her head. We’re struggling to help her, last night we had to sit back and leave her to settle herself as she didn’t want us close, it was heart breaking.
Every day we wake up hoping for an improvement today, maybe today will be better, maybe the pain will go a little and she’ll feel more like loving Mummy and Daddy.