Ummmm Nutty!

Aug 22 2010

After a week off chemotherapy and the meeting with Mr Garnett and Amos, Camille began her next cycle of chemotherapy this week and potentially the last before surgery. Each of these cycles lasts for four weeks which includes three consecutive weeks with three days of treatment in each week. The fourth week is a rest week so that Camille’s blood levels can recuperate before the next cycle.

We are still none the wiser of when the surgery is likely to take place; Amos had indicated that we could be looking at six weeks from the beginning of the cycle but until a few I’s have been dotted and a few T’s crossed we will not know for sure. A lot rests on communication with Alder Hey hospital in Liverpool. Earlier this week we received a copy of Mr Garnett’s letter to Mr Mallucci of Alder Hey, asking whether he would be prepared to review Camille’s scans in the knowledge that we are interested in his intra-operative MRI scanner. The letter described the situation in a little detail and suggested that we would like a meeting to discuss the possibilities of surgery taking place under Mr Mallucci with his technological advantage.


We need to be open-minded about the intra-operative MRI scanner; if Mr Mallucci was to come back and suggest that it wouldn’t provide any significant advantage, we would have to live with that decision. I can’t see how it couldn’t be an advantage to Camille given the size and position of her tumour, but you just never know. Mr Garnett didn’t seem too aware of the facilities at Alder Hey and was very much going to look at Camille’s case with an open mind too. We are now waiting to hear back from Mr Mallucci, hopefully to agree to a preliminary meeting to discuss his thoughts on Camille.


In the meantime we carry on as normal. We did have some bad news this week about another patient at Addenbrooke’s. Soon after Camille was diagnosed we were placed in a bay next to a teenage boy with a brain tumour who was always accompanied by his mum. Over the year or so Hayley ended up spending quite a bit of time with them including New Year’s Eve. Kenton’s treatment had been problematic but then again so does everyone’s; but he finished treatment and went into remission. While he was trying to get back to normality, his mum became ill and was soon diagnosed with a secondary brain tumour. Unfortunately his mum isn’t holding out much hope for herself, which must have been so upsetting for Kenton and his brother. A week or two ago, Kenton’s cancer came back in his stomach and this time it was too much to treat and to fight. Kenton died on Thursday of this week, his mum by his side as always. Hayley was pretty upset as another person she has grown to know has so tragically passed away. She also started to look too deeply into a few things such as a photo from the parent’s room on New Year’s Eve; there were six families in there that night, two of the children have since passed away, the cancer has returned in another two. Hayley was looking for fate’s plan in it all, but it doesn’t mean anything, all it tells us is how devastating childhood cancer really is.


On Saturday we popped to our local Tesco to help another charity do some tin-shaking outside the front door. We’ve done a similar thing for Camille’s Appeal at Stansted Airport some time ago which probably goes down as the single most painful few hours in my life, but actually Saturday was OK. The tins were slowly bulging with coins by the time we left as so many people came over to put some change into the tins. I was pleased with the reaction but actually I was more surprised by the demographic of donors. It wasn’t the middle aged, bourgeois that dipped their hand into the pocket, it was the young guys with muscle tops and more bling on their caps than an old Pearly Queen. It was a life changing experience standing there; no longer will I just walk past if I have a few coins in my pocket. I think everyone should spend a couple of hours tin-shaking.


It’s now only six days until the big Bungee Jump and Fun Day and today we all met at the Suffolk Food Hall where the event is going to take place for final preparations. I must say Stewart is really organised and has market out on a plan the entire site, budgeted for all expenditure, created rotas and liaised with Bungee Jumpers. I have no idea how he manages to do it all but I am beyond impressed. All that’s left now is to put it all together on the day and for me, take the leap of faith. We are hoping and praying that the weather is going to be good and that people turn up. Lucia and I did some leafleting around our area today. If she doesn’t end up being a Stuntman (which is entirely possible), there is a good chance she will be a Postman; she loved every second of it.


After we had leafleted, I took the girls over to the park with a single plan, teach Lucia how to ride a bike without stabilisers. She was amazing; I ran alongside her holding on to the saddle until she had a head of steam and GO! She was off, riding serenely across the grass……….towards the path………over the path……………onto another patch of grass towards the iron railings. As I burst into a sprint to get to her as soon as possible, Lucia just swung her bike around, put one foot on the floor and said “How far did I go?” Camille was whooping and cheering from the starting point; Lucia has the bike bug. I feel that I could be getting fit sooner rather than later.


Finally, we have a problem. We have a secret peanut eater in the house. Hayley’s sleeping tablets are doing funny things to her appetite and last night, at a time unbeknown to all of us, she crept down stairs like the man in the R-Whites advert and opened the draw the houses the salted peanuts. Hayley woke up with peanuts surrounding her in bed, remnants of half chewed peanuts still sitting in her mouth and a kitchen floor speckled with the salty little blighters. If in the night, you here a crunch, perhaps you too have a SECRET PEANUT EATER!