On Sunday afternoon, Camille had been quite sick and lethargic. Having just arrived back from chemotherapy at Addenbrooke’s both Hayley and I considered that this particularly poorly episode was as much down to the Cisplatin as anything else. Camille also managed to hold off any temperature which made us feel a little more confident that it would pass.

The following day was Bank Holiday Monday and we popped into Felixstowe in the morning to see a family whose daughter was doing a sponsored run for Camille’s Appeal. Camille was quiet but OK as we ventured down to the seafront to see the end of the event. As we ventured back towards the car it began to rain quite heavily so we made a break for it out of the trees and towards the street where our car was parked. I was pushing Camille’s pushchair and as I crossed the road to a section of dropped curb, the pushchair got caught in a groove between pavement and road. Normally Camille would be strapped in, but now as a big girl she didn’t want to be so we’d left her unattached to the chair. The buggy tipped forward just a few inches but the jolt was enough for Camille to be unseated and fall onto the path in front of us. It all went in slow motion and I initially saw her blanket flop to the ground followed by her. I had initially thought that her arm and body had broken most of her fall and although she did fall back on to her head she did land on the blanket and was also wearing a woollen hat which I was hoping had cushioned her fall. She did cry for a while and we travelled slowly back to the car, with me wanting the ground to open up and swallow me and Hayley hoping for the same.

Just a few hours afterwards, Camille came down with the temperature that had been threatening for the previous twenty-four hours, so Hayley took her in to hospital. It wasn’t long after that when the phone rang. It was Hayley suggesting that I got down to Ipswich as she really wasn’t very well. Camille’s temperature had risen to 41.4°c and she was barely awake. The doctors at Ipswich were fantastic and decided quickly to get Camille to Addenbrooke’s as they feared the cause of the infection was shunt related. The ambulance was called and Hayley quickly popped home to get her clothes together for the stay. The ambulance team were quick and arrived before Hayley had got back from home. I’d noticed a slight blue tinge to Camille’s eyelids and her lips but wasn’t sure if I was seeing things or whether it was new, but when Hayley walked back in, she could see straight away that her colour had changed and didn’t look good. The nurse agreed that it would be worth getting the doctor to just check her over before we left for Addenbrooke’s and he was immediately paged. Within minutes the ambulance team had been sent away and we’d been taken to the room with all of the monitors, surrounded by two registrars and the consultant Doctor James who had been called in from home.

This situation was itself pretty hard for both Hayley and I. We had Camille in the room where we were told that she had the tumour, laying on the bed that she laid on that day looking very poorly. The same fake leather chair sat alongside one wall, the same leather chair that I had sat on facing Doctor James back in June; the same leather chair I had sat on in floods of tears. I had flashbacks as I crouched by the bed; I remember walking to the door and seeing my sister turn up as I broke down again and I remembered seeing her sedated on the bed wondering if I would ever see her smile again. It could have been the same time but for the changes of appearance that come over families going through this process. Camille’s blood pressure had gone very low, her heart rate was increasing by the minutes and her temperature was high. After three hours, the doctors were satisfied that she was more stable and able to travel. The suspected correctly that Camille had gone into septic shock. Hayley and Camille were blue-lighted to Addenbrooke’s. I went home not knowing or expecting anything would happen during the night. As far as I was concerned, stable meant she was stable.

During the night, I heard my phone vibrating beside the bed. Bleary eyed, I picked up the phone and noticed that it was Hayley and the time was just after 4.00am. Camille was being taken to Intensive Care and she wanted me to get to Addenbrooke’s as soon as I possibly could. The biggest issue was that I was at home alone with Lucia. We are lucky to have family around and Hayley’s sister quickly flew over to stay at our house with Lucia while I rushed off to the hospital. The journey from Ipswich to Cambridge is one I’ve done many times, but on occasion they have had different significance, like the first time I followed the ambulance there. This was no exception as my mind wandered into the darkness and with it came floods of tears once again. It was gone 6.00am by the time I finally arrived at Addenbrooke’s. Camille was looking seriously bloated from all of the fluid she had been given to stabilise her blood pressure and she was laying on the bed breathing very quickly and very deeply barely awake.

Amos arrived in the unit early and opened with the statement “I think her line has done its time”. We were all pretty aware that it was more than likely that she was suffering from a Hickman Line infection, although at that point we were still unaware of exactly what we were fighting. All we knew was that we needed to get that line out of her body so that she could begin to recover, so we were put straight on to the emergency surgery list for the day. The infection had also had a savage affect on Camille’s blood levels and before she could go into theatre she had to have a quick platelet transfusion to ensure that her blood would clot properly, and although this took a while to ensure a correct cross match, she was transfused by 11.45am. Over the next two hours Camille began to deteriorate quite quickly; her little body sprawled across the bed barely managing to do anything apart from pump her heart at an unhealthily fast rate. As the minutes and hours ticked on we were getting increasingly concerned, so Hayley got Amos on the phone from his surgery downstairs. Hayley broke down on the phone and it wasn’t long before Amos’s figure appeared in the doorway; an image that offered a few moments of calm. Camille’s veins are so small and the puffiness caused by the excess fluid had left it almost impossible to get a canulla inserted. This meant that Camille’s medicines and fluids were still being passed through the infected line, making her more and more sick. Amos stepped up to the plate and after a couple of attempts managed to get a canulla in and soon afterwards she was finally taken into the operating theatre.

A huge relief flooded over Hayley and I but she was definitely not out of the woods. That night I stayed at Acorn House, the Sick Children’s Trust building on site just so I was close if I needed to get to her beside in any haste. I’m not a big fan of staying at Acorn House, as I don’t always feel comfortable there. Tuesday night was no different. I entered my room and laid on the bed hoping for a long night’s unbroken sleep, but just as I began to drift, a couple in the next room began their three hours of arguments, with slamming doors and door dissected communication. Unable to sleep, without a phone or a TV, I did what any man would do and I picked up the Gideon’s. The next day when I mentioned this to Hayley, she asked what I had read, well I started at Genesis, got a bit bored after the creation and skipped to Ezekiel to polish up on my Pulp Fiction quotes and then visited Revelations just to see how the world is going to end. Finally, I drifted to sleep and slept a deep sleep until daylight.

I was awoken by a ringing and immediately I reached for the alarm clock but on inspection realised that it was the room’s phone which was ringing. I knew exactly who it was, so panicked; I clambered across the room and picked up the receiver. Hayley said “Can you come over? There’s a problem”. Within ten minutes I was standing in front of Camille’s bed; her kidneys were not working and she had been unable to clear the fluid which had caused her bloated features over the past couple of days. This is a typical symptom of septic shock, as the blood in the body gets redirected to the vital organs, the kidneys normally being the organs that get starved first. Over the day we were transfixed by the amount of urine being passed and the levels of the urea amongst others in her blood. The same wait has continued ever since, with little or no improvement to the various levels that are being used as indicators until today when the levels of urea began to plateau.

On Thursday evening Amos came up to see us on his way out. After scanning the files for a few seconds he looked up and said “I’m worried”. Amos always said, right from the beginning, that we should only worry when he’s worried and that he would always tell us the truth. He went on to say that he was concerned that the kidneys would not recover enough for Camille to be able to continue with the chemotherapy protocol that she is currently on, the one that has been so effective to date. There is a plan B, but it’s a plan B and is not as effective as the current protocol and also has a smaller window of opportunity. Hearing this Hayley began to cry as she sat on the bed, I went quiet. I couldn’t believe that we’d come so far and that an infection that had indirectly resulted from the chemotherapy could in fact prevent her from continuing that particular program. Amos continued with the news that Camille had been notionally accepted by the NHS for the Proton Therapy treatment in Florida. However, there is a catch; Camille would need a “full resection” before we would be able to go. There is a debate on how much a full resection actually is. Amos seems to believe he could haggle from 90% up; our current position is for a possible resection of just 75%, with a limited chemotherapy available, the extra 15% looks a long way off. We don’t know how things will pan out with these kidneys, or what the scan in the next week will show. All we do know is that Camille has this week taken a major blow in her treatment, a blow that no three year old should ever have to experience.

On the way home this evening I was thinking about the words that Hayley said the moment Doctor James walked out of the room when she was diagnosed, “She’s a baby, she’s just a baby”. She is a baby, a very special baby; but unfortunately she is a baby that has been taken out of her childhood and placed in this alternative world, surrounded by doctors, nurses, monitors and a mist of apprehension.

Today was a bit better with regards to her blood levels and she was also a little brighter. We tentatively step into next week hoping that her kidneys spark into action and that we can begin to plan for Florida positively.