Every Time You Hear a Bell Ring

Mar 14 2010

Even though Camille had gone in late for her chemotherapy due to an infection in the previous week, we were still on course to complete our fourth cycle.

Camille is due to undergo seven cycles by mid August 2010. During each cycle very little happens, everything is saved for the week in between one cycle finishing and the next cycle beginning.

This week, we had the added complication that Lucia was unwell with a high temperature. She spent most of Monday curled up on the sofa while I worked from home; by the time Hayley arrived home from the hospital with Camille, Lucia was ready for bed. We had to try and keep Lucia and Camille apart as much as possible because we couldn’t risk Camille being exposed to another infection, so on Monday night Lucia slept in our bed. I’m not sure if Lucia and Hayley have anything against me but they certainly made it very difficult for me to sleep: a knee to the ribs, a snort in my face and the gradual shift over my side of the bed. I’m not sure if it is frowned upon to bail out on your sick daughter to ensure a few hours beauty sleep. To top it all off, I had an early morning to look forward to and a drive up to Derby. As I powered my way up the M1 I phoned Hayley at work to check-in and to see how the girls had been in the morning; the phone was answered by one of Hayley’s colleagues “sorry, she’s off sick today”. “Is she?” I replied. Whatever Lucia had come down with was obviously catching. Hayley and Lucia spent most of the day in bed feeling pretty grotty. Camille was downstairs in relative safety playing with her Nanny Patsy.

As Camille had come down with an infection the previous week, we had to finish her ten day course of antibiotics by taking her into hospital each day to get her dose injected into her Hickman Line. With a man down at home, I had to get back from Derby by 4.00pm to get her to hospital. That was just the beginning of our hospital visits for the week. Wednesday was the day we had our first MRI scan since the end of November, the scan that we hoped would show a reduction in the tumour. We arrived at Addenbrooke’s a little late but in plenty of time for Camille to be sedated before going in to the MRI machine. Every previous time she has been sedated, she has pretty much rolled over and dropped into a nice peaceful sleep. This week was different. As the seconds ticked on, a broad smile appeared on her face, her eyes glazed and the pink elephants began to dance around the room. Camille was drunk. She was hilarious as she clambered around her bed in a haphazard manner, chuckling heartily at everything and anything that she could see. Soon after she finally succumbed to the sedative, we made our way to the imaging department. As the first MRI scan delivered such devastating news, Hayley has labelled herself as bad luck and now stays outside while I take Camille in. As the scanner gobbled Camille up, I stood by watching her as the radiologist went through the processes behind the glass partition. The minutes went on and on, and at one point I noticed they began to scan a bit further down, perhaps the neck. The scan continued much longer than ever before, and they went lower and lower. At this point, I was starting to feel a little concerned, had they seen something? I looked round two to three times at the team behind the window to look for indications that they were alarmed by something, but each time they were clearly talking about anything apart from the scan. It was only at the end that it was put into perspective that the radiologist was a student and was just going through the motions as a training exercise. The truth be known, I didn’t relax until we had the call later in the week to indicate the results.

I was out again on Thursday, so Hayley took Camille for her hearing test, which again was probably the best one she’s had. Afterwards, Hayley popped into work for the remainder of the day while my parents sat with the girls at our house. While I was on the way back I had a panicked call from my mother saying that Camille had been sick and brought her NG tube up. So again, like two days earlier, I was battling through the traffic so that I could get Camille to hospital. I walked in the house to see Camille still with the NG tube stuck to her face with the loose end, once submerged into her stomach flapping around like an old elephant trunk. This was new territory for my mother and as far as she was aware they stuck the same tube back down again, however, it was a funny seeing Camille toddle around the room with a foot long bogey-like string dangling from her nose.

Again, on Friday we were due at Addenbrooke’s for Camille’s kidney test. I took the day off and left bright and early to get to the hospital for a 9.00am start. Kidney tests are pretty boring exercises. Once the radioactive substance has been injected into her bloodstream, you literally have to hang around for four hours just to have three sets of bloods to be taken. While I waited for the third and final set of bloods, I happened to glance at some Facebook messages and saw some posts relating to a little girl called Sophie Atay, who had been suffering from Neuroblastoma, a particularly horrid form of cancer. Sophie had passed away the night before at just two years old. As I read the messages of Sophie gaining her angel wings I became pretty upset. I do try to distance myself a bit from other cases of childhood cancer for these reasons, but I had to read this time. Hayley and I would like to send our condolences to Sophie’s family; she was a beautiful and very brave little girl.  Just this afternoon, Hayley received a message to say that another young girl, Holly from Addenbrooke’s was facing the worst possible news after her Neuroblastoma relapsed. Hayley has got to know Holly and her mum over recent months and is absolutely devastated. I wish Holly all the best and we are thinking of you constantly. Holly was in the room next to us when we were first admitted to Addenbrooke’s back in June last year. I will always remember seeing Holly that night and not knowing how these families deal with day to day life on C2; I’ve learnt a lot since that night and it’s thanks to kids like Holly and her mum.

When I received a phone call a few hours later from our Specialist Nurse, Harry, to tell us that the scan had shown a reduction in the size of the tumour, the news about Sophie remained a sobering thought. Our news was exactly what we had hoped for; we still have no idea how much the tumour has shrunk or what particular areas have shown a reduction, but even just knowing that we were definitely heading in the right direction left Hayley and I almost bewildered with joy. We now have to wait for another week before Mr Garnett and Amos can sit down and discuss Camille in a bit of detail. Once this discussion has happened, we will be in a better position to know where we are and whether we are closer to surgery.  I feel confident that the reduction would be of a notable size, but I am also aware that this really doesn’t mean anything. We need to see movement away from the key structures inside the head before Mr Garnett will operate and this could be another cycle or two down the line. For the moment, Hayley and I feel upbeat, confident that Camille will get better.

Over the last few days, Camille has taken some more major steps to getting back to her former self. She is now walking, by herself and everywhere. This is an amazing step forward. This morning, for the first time since June, she was able to run around with her sister and cousins, able to join in again. For so long we’ve had to watch Camille sit by herself away from the other children. This again makes me feel so upbeat about the future.

Yesterday morning, the post arrived quite early. As I skimmed through the envelopes I noticed one with an SW1 post mark. Straightaway I knew that it was from Downing Street. Hayley and I have been invited by Sarah Brown to a Cancer Support evening at Number 10 in a couple of weeks. I wonder if anyone will talk to us.