Home Again

Jul 11 2009

After receiving the news that the initial biopsy yielded an inconclusive result of what kind of brain tumour my little girl was facing, we made our way to Addenbrookes hospital for 9.00am on Thursday so that she could once again go into the operating theatre to take a larger sample to ensure the correct answer can be reached.

Once again, Camille had to go nil by mouth prior to the operation; she struggled to make it through the morning with the steroids she is currently prescribed making her very hungry and very angry. Her Neurological Consultant, Mr Garnett visited us mid morning and was very apologetic about having to do the second biopsy and also for the use of the steroids . We learnt that there are some quite heavy risks associated with the second procedure compared to the initial operation. The neurological team were to drill a hole somewhere behind the ear at the back of the head the size of a 10p coin, they then insert a large syringe into the middle of the tumour to take a sample. Tumours are generally full of veins and there is a high risk of bleeding and therefore a hemorrhage is a possibility. With this procedure, it is a lot more difficult to prevent bleeding. We again had to go up to the 6th floor with Camille fully awake knowing what we were handing her over to.

The last anesthetic she endured went straight through a cannula in her foot directly into a vein. Unfortunately , she no longer had a line to do this and to put her through trying to get another one in would be traumatic. They decided that they would do this whilst she was asleep, to do this they needed to use the gas mask. As I described in my last post, seeing your two year old curl up as anesthetic is injected into her blood will haunt me forever; seeing her screaming with a gas mask being held over her face is again a vision that will not leave me for a very long time. Hayley, my wife, was really upset as she held Camille's arms away from the mask.

We were again told that the operation would take approximately two hours; we've now learnt that when a neurological consultant says to you that an operation will last a length of time, it is best to double it and then you will get closer to the time it will actually take. As with the previous week, we rushed up to the recovery area once we had notification that she had been woken from the anaesthetic, and this time we were allowed straight back down to the ward. She had again done really well and they were very pleased with the procedure. We are now once again waiting for the results, a wait that was a living hell last week, and I'm sure will not be any easier this time.

We stayed in Addenbrookes the following day, Camille had time to recover from the operation and was sedated again so that they could have a CT Scan to check that there was no bleeding. The scan was clear and once she had woken from her slumber, eaten something and wee'd , we were given the all clear to come home for the weekend until the results arrived from the lab. All we had to wait for were the medicines. The pharmacy clearly didn't share our urgency to get home, and two and a half hours later we received the bag of medicines for the next week.

We decided that Camille should try to sleep in her own bed rather than ours like she had been the previous week. This worked really well and she slept right through the night with just the occasional noise.

Camille was very sleepy in the morning and soon after coming downstairs, she was sick. This is a real concern for children with tumours, any change in state needs to be treated very seriously. We were advised by Addenbrookes to take her to our local hospital, she was again scanned to compare to yesterday's and monitored for a few hours. She ended up being fine and is now back home once again.

We did meet the Radiographer who surveyed the original MRI scan at hospital today. He found it hard to talk about when he saw the scan, he seemed genuinely emotional about Camille's situation and suggested that in the region of twenty doctors viewed the scan that day and tears were shed by the professionals . Sometimes I forget that we are in a whirlwind, an exceptional circumstance and that people may be touched by our little two year old. The Radiographer opened my eyes today to the situation we find ourselves in; his compassion was warming, the moments that force me to realise our position also scare me.