Jul 14 2009

After the second biopsy of Camille's brain tumour was taken last Thursday, we were really not relishing a further week long wait for further news from the hospital. Monday came and we were called by a Family Liaison Officer from the CLIC Sargent charity. As an organisation they offer support to families of children with Cancer and try to make it easier to organise the normal things in life that we all take for granted, as well as advising us on how to interact with Lucia, my eldest daughter.

The lady from CLIC Sargent organised to come to our house Monday afternoon and like everybody we have been introduced to from the time we arrived at Addenbrookes two weeks prior, we have nothing but good things to say. She offered us a sounding board for any concerns we have for anything away from the actual medical element of the problems we face.

Whilst we were talking through various elements of support that are offered the phone rang; I answered the call and was pleased to hear one of the registrars from Addenbrookes at the other end. After asking about how Camille had been getting on with the steroids she finally mentioned that they had been able to get a diagnosis based upon the second biopsy and would like us to go back into Addenbrookes the following day. She also asked if we would be in agreement for them to put Camille on the emergency surgery list for Tuesday so that they could insert a Hickman line to enable Chemotherapy treatment to commence. As we were due to have the meeting with the head consultant the following day she wasn't able to expand on the information, but the fact that they were looking to offer Chemotherapy had to be a good thing. As I went back into the living room where Hayley sat with the CLIC Sargent officer I announced the news I had just received over the phone; Hayley burst into tears, she too was feeling the overriding hope that this snippet of news was positive and they felt Camille had a chance.

Of course like everything associated with this illness, we would have to wait for anymore detail and any kind of reassurance that there would be a chance. We were asked to arrive at Addenbrookes for 8.00am as they couldn't predict the time emergency surgery could be performed for the Hickman Line insertion. Again, this meant another morning of Nil by Mouth time for Camille, and once again, with the steroids she was climbing the walls.

We sat in the Pediatric Day Unit for half and hour to an hour before a nurse informed us that we would not be going to theatre that day as there had been some emergencies overnight which had to take priority. We would still be seeing our Oncology Consultant to go through the diagnosis.

Shortly after 10.00am, we were summoned into the room where my father passed out a week or so previous to go through the detail of the tumour. Our Oncology Consultant is a very straightforward , helpful and easy to understand guy who explained the situation perfectly. The tumour is aggressive as they had first thought, however, it is certainly not as aggressive as it could be. The position of the tumour is still the major problem. The site is at the top of the Brain Stem where it meets the Cerebellum, the part of the brain that controls balance, movement etc. The Brain Stem itself is obviously key as this feeds all of the information down the spine out to the rest of the body. The shape of the tumour is swan like as the top has spread upwards between the left and right side of the brain. A further complication with this is whether or not the tumour is occupying and overtaken cells from particularly important areas of the brain as mentioned above; the MRI scan could not give this information, it could quite as easily just be pushing the parts of the brain out of their normal position. Before any surgery can take place, they would need to be sure that it hadn't invaded the Cerebellum or Brain Stem.

With this type of tumour, surgery is normally a major part of the treatment plan, along with Chemotherapy and potentially Radiotherapy . In Camille's case, we would have to lead with Chemotherapy rather than surgery to hopefully reduce the size of the tumour enough to ensure that the operation would be as low risk as possible with any brain surgery. They don't even have to shrink the tumour to a small size, just enough to ensure it is independent of the rest of the brain. Once any surgery takes place, the Chemotherapy will continue to ensure any remains of the tumour that are inevitably left are managed and hopefully cleared.

This is all a very long term view. At present we have only been presented with the initial set of three Chemotherapy treatments. In affect it is a clinical trial to try to understand why the UK's Chemotherapy statistics are better than other countries. After these three treatments, they will re-scan the brain to see if there has been a positive affect. It is likely that any positives at this stage would be minor if at all, and certainly not to the degree that would see Camille back in theatre.

They are planning a course of 28 treatments throughout the Chemotherapy life cycle for Camille, a period that will certainly see us in and out of hospital over one year. She will endure side affects with the treatment, and we are fully aware that the next year or two will be very difficult for both Camille and for the family as a whole.

The last thing that was mentioned is Radiotherapy . This is a treatment that they will not perform on children under three as the side affects are particular dangerous. However, it may be something that they would look to use 4-5 years down the line if required.

The sentence that made me feel confident, relieved and ready for this fight was when our Oncology Consultant said "We are treating to cure", it's not a quality of life issue here, they are hoping as we are to cure our little girl. We our trying to keep our feet on the ground, we know this is only the beginning, things can change very quickly and we need to be prepared for any eventuality. Even taking this into account, I am embracing the hope that we have been afforded by the Oncology and Neuro teams and we can't wait to get started.

Again, we sit by the phone waiting for the call to start the treatment. Again, the days are long. This time we are surrounded by hope.