Everything Has Changed

Jul 8 2009

My last post was a couple of weeks ago, soon after we arrived back from Disneyland Paris. At that time I mentioned that my youngest daughter Camille had lost a lot of weight as she was refusing to eat and drink. Since that time, our world has been turned upside down. From this point my list has become unimportant, the only thing I want to achieve in life now is to see both of my girls get to their 21st birthdays and beyond healthy and happy. Let me give you a clearer picture of what has happened.

We arrived back from Disneyland Paris late on the Wednesday night. Camille hadn't really eaten very much all week to that point but was having a little and still drinking regularly. Over the course of the next few days the eating pretty much stopped completely and over Friday evening through to mid-afternoon Saturday she had not drunk a thing. Her lethargy had become a serious concern and with this we took her to a weekend clinic followed by Pediatric Assessment Unit (PAU ) at hospital. Everything about her looked normal aside from the unwillingness to take anything on. We left hospital that night hoping to naturally get her back eating and drinking.

By Monday my wife decided to take her back, she had very little since our first visit but again, everything had come back normal. By Thursday a third trip was the only option and this time they kept her in. The only way to ensure she was getting enough food was via a Nasal Gastric tube which was distressing for Camille and that night she had pulled it out so had to endure the process once again.

Over the course of the following few days, numerous tests were done on Camille's blood, the one we were all expecting to come back positive was the Coeliac Disease test. Coeliac's have a intolerance to wheat based foods and cases have shown that this disease can affect the patient psychologically as well as physically (vomiting, diarrhoea etc). The results from this test were not due until Wednesday. The Saturday before my wife suggested to the consultant doctor that she was worried about all sorts of things and asked for an MRI scan of Camille's head. The doctor suggested that it could be something to do with auto-immune issues, a problem that causes cells to attack each other.

The MRI scan took place at 15:00 on Monday, I was unfortunately not present as I struggled for over 20 minutes to get a car parking space. Camille's lethargy was a serious concern for everybody, but due to the research I had done on the Coeliac Disease idea, we were all pretty confident a change in diet would sort her out.

At 17:00 my wife and I were called through into a private room, and our consultant doctor said the words "There is no easy way to tell you this.....". Camille's scan had shown a large brain tumour and from that point nothing could ever be the same again. I can still just see the doctors face as he was telling us, I will be haunted by that image for the rest of my life. We both broke down but somehow managed to get all close family to come to the hospital as soon as possible. We broke the news to them as one, and while we all came to terms with the news an ambulance was booked to take us to Addenbrookes hospital that night. We arrived in Cambridge at 21:00, only four hours after the diagnosis.

A neurosurgeon Mr Kotter visited us that night after having briefly reviewed the scan. His demeanor suggested this was not good and we were going to have to fight hard to keep our little girl. The rest of the evening was quiet, horrible and we were inconsolable . To deepen the problem of our ever wandering minds, I was made to leave my sick two year old and wife and go to spend the night in some NHS accommodation consisting of a pile of sheets and single bed. I didn't sleep very well that night, and from 5.00am I was wide awake, crying continuously until it was 6.15am and I could start to consider going back to the ward.

Camille was on hourly observations to ensure the fluid on her brain was not going to prove deadly. This meant that every hour of the day she was being woken and prodded and probed. She was a very tired very ill little girl when I arrived that morning. We had been told by Mr Kotter the previous evening that Camille was likely to go into theatre on Wednesday to insert a shunt, a device that regulates the fluid build-up in the brain and to take a biopsy of the tumour to determine what we are dealing with. There are many different types of tumour, some can be treated effectively and some are "more difficult" to treat. There are also then different grades of tumour which indicates how aggressive they are, 1 being benign, slow growing and less risky and 4 being malignant, fast growing and very dangerous.

We met a large number of doctors, special nurses and subsidiary staff that Tuesday morning, however only one man stood out. He was the chief neuro- surgical consultant at the hospital, Mr Garnett . He came in to introduce himself and to arrange for us to have a meeting with him in the afternoon to go through what we know. We were sick with worry that morning and convinced that we were going to lose Camille. We decided that we needed to get her christened, not that we necessarily believe, but it is surprising what we do under these circumstances . My wife was beside herself with worry that if Camille did leave us, she could be in a place looking for her mummy with no one to look after her. This thought along with the doctor's face will also haunt me for the rest of my life.

The meeting that afternoon was hard going, my wife was unable to attend as she was seriously struggling to face percentages and risks at this time. It turned out not to be that kind of meeting but again certainly not a positive one. The tumour is in a very awkward position and from the scans looks to be the size of an orange. The position is behind the eyes and up in between the two main sections of the brain. The sight of the scan images will again go into my album of images I will be left with for the rest of my life. My father joined me at this meeting, however, mid-way through he was struggling to keep consciousness and was required to lay down to regain his composure and get his sugar levels up due to his diabetes.

Camille went to theatre at 13:30 on Wednesday. The site of the anaesthetic taking hold and curling my little girl up was traumatic for us, however, I'm sure she was completely unaware of the affects. At 16:00 we received a call to say that Mr Garnett was yet to start surgery on Camille; by 19.00 we were told she was now in recovery. Waiting over five hours to see your little girl again is too long for anybody, a pain and worry I can't handle too many times.

Camille was taken to Intensive Care for monitoring overnight and through to the next day. She was fine after the initial operation and this was the first time in days that we have felt a sense of euphoria and were able to smile, at least once. After the first night, the nurses had secured me accommodation at Acorn House, a charitable establishment by the Sick Children's Trust. As Intensive Care do not allow parents to sleep, Hayley was able to spend the night there and finally get a little sleep.

Ever since that day we have been awaiting the results of the biopsy, so that we can agree a plan with the consultants and to set us on our way with our new life and a positive plan for recovery for Camille. We were allowed to come home from Saturday.

Today, I received a call from Addenbrookes to tell me that the initial biopsy has not yielded any clear results. This means that we have to take Camille in again tomorrow for a second operation, and a second week of waiting and wondering what the rest of our lives will look like.

Camille is brighter after the fluid was released by the shunt, but the Dexsol steroids make her very irritable and give her traumatic nightmares that wake her numerous times every night screaming.

We now need some positive news, a plan and some guidance on how to get our little girl better. We are open to pioneering medicine if existing methods will not be successful, we are putting our trust and the well being of our pride and joy into people we don't know and above all else, we are very, very scared. We have built our lives around our children, every decision has their best interests in mind, we are now in a position where we have lost that control, we now have to trust other people.