Just When We Thought......

Jul 22 2009

After the positive meetings last week we had a good weekend, doing little bits and pieces with the girls and generally looking forward to getting the treatment underway and taking the first small step towards our end goal.

Monday was a great day for Camille; she was bright and happy all day, the perfect way to go into the year long treatment course that lay ahead. We dropped Lucia at Nanny and Grandads around tea time and head off home. Camille went to bed at the normal time and I lay with her for half an hour or so just to settle her and get her off to sleep. She was great, laughing and giggling as Hayley played pee-boo around the door and finally went off about 7.30pm. At 9.00pm Hayley went to settle her after she had been woken by one of the night terrors that she experiences these days. Hayley called me in to have a listen to her breathing as it was heavy and sounded quite shallow; I in my wisdom decided that it wasn't anything to worry about and to leave her.

At 10.00pm we went to give her some paracetamol through her NG tube and noticed she was hot, her temperature was about 38.0c, a little hot but not too bad. I said to Hayley that we should give her the medicine as that should bring her temperature down. Unfortunately we couldn't get any fluid back on the NG tube to test that it was correctly positioned in her stomach; this meant that we couldn't give her the medicine. Another temperature reading displayed a temperature of 38.5c. We tried and struggled and managed to get a little down her orally but a further check of the temperature showed a further increase to 39.0c. At this point we jumped into the car and headed for the hospital.

We have got open access to the pediatric ward at hospital but we rushed into A & E, by the time I had parked the car, Hayley was fed up of asking menial questions to the receptionist and just wanted to get her seen to. After a very direct sentence from Hayley, the lady let us through to the pediatric waiting room and within seconds a doctor had come to get us and swiftly took us through to the resuscitation room, purely because the equipment is stationed there. It doesn't stop you thinking, and I was scared, I tried not to show it but I was really scared. With the temperature, Camille looked as ill as she has throughout this past month. Hayley was clearly thinking similar thoughts and since that time has admitted that she thought that was going to be the night that we lost her.

It turned out to be a pretty dark night, plenty of bloods were taken from er Hickman lines, chest x-ray was performed and antibiotics and medicines prescribed . We reached the ward at 2.00am after her temperature came under control from a high of approximately 40.0c. I left at 2.30am with an early morning in mind, it was clear that we wouldn't be going to Addenbrookes the following morning. Hayley and I were very disappointed and struggled to get to sleep.

The following day something else was brought to my attention that I wasn't comfortable with. The doctor who was on rounds that morning was the same guy who broke the news to us three weeks before that Camille had the brain tumour. The same guy whose face has been haunting me ever since that day. Camille had been allocated her own room as they were testing her for various things including swine flu, so nurses and doctors had to wear masks, gloves and gowns. I left the room to get a drink for Camille and as I opened the door, both Hayley and I saw the doctor standing in front of the nurses station, my heart sank. It actually ended up being OK, he came into the room and actually mentioned nothing about the tumour, nothing about that day and just went straight into the detail of this particular temperature. He may have been nervous too.

The news we got wasn't great; we were told that we needed to get the results back from the bloods the previous night or a positive result from the flu swabs to understand what we were looking at. A delay to the Chemotherapy was a definite, how long this delay would be very much depends on what the infection is.

Tuesday night Hayley got the news that it was an infection of the Hickman line, there are two types of infection and they still needed to wait on the result to determine the class of infection. Tuesday night Hayley went through hell. Camille's night terrors were as bad as they have ever been and whereas at home we had been advised by Addenbrookes that we were able to give her a dose of Medised to help her sleep, our local hospital flatly refused to do so, in fact not one doctor went into see her even though all the staff on that night could here her screaming from the bed in pure terror. When I arrived in the morning Hayley was a mixture of tired, scared that the tumour was affecting this sudden change in behaviour and also angry that no one had paid Camille any attention when she most needed it. When the doctor came to do rounds the next day and began to explain why they couldn't allow Medised to be given Hayley got quite emotional and expressed her point particularly heavily. The doctor acknowledged the overnight staff should have paid more attention to Camille 's needs but wouldn't move on the Medised issue, that was until Addenbrookes overruled him later in the day.

We found out mid-afternoon that the infection was the worse possible kind and would require the Hickman line to come out and another one put in at least 48 hours later. Hayley was again inconsolable, the delay to the Chemotherapy was looking to be pretty lengthy and what damage to Camille was a further delay going to cause. After putting our case to Addenbrookes directly over the phone, they decided to put a plan together that helped us. Tomorrow morning at 6.00am Hayley and Camille will be taken by Ambulance to Addenbrookes where I shall meet them. Camille will be given her first Chemotherapy session first thing, followed by surgery in the afternoon to remove the infected line. A new line will be inserted at some point next week before the five day Chemotherapy begins in two weeks time.

We are extremely disappointed that Camille will have to go through a further two operations, making it five in four weeks. We needed to get the Chemotherapy started, that is coming at a price, two more times we will have to see our daughter put to sleep.