Windy Miller

Apr 11 2011

The curtains flapped violently into the bedroom, the apartment resonated with a howl that haunted my early morning slumber. Slowly I woke realising that window ledge ornaments were about to fly off into the room and crash onto the floor. I hopped up to close the bathroom window first and then all other gaps that led to the outside world. We were in the middle of our first Florida tornado and the girls slept through the whole thing.


It was last Tuesday when this all happened at 7.00am. The TV channels were bypassed by emergency services to notify everyone of the tornado, but by that time the tornado had hit Point Meadows and was on its way to its next victim. The locals around here are used to tornados; it wasn’t even a topic of conversation that day at the Proton Institute.


We didn’t get to see Dr Danny for Camille’s weekly check-up until Friday of this week, which was killing Camille as she was desperate to show him how she can walk again. Since last Sunday when she found her legs for the first time since October last year, she has come on leaps and bounds. The difference when we visited the physiotherapist was tremendous; after a few minutes defrosting, Camille set to playing picnics and shopping with her, walking with shopping baskets to bring Daddy his food (she knows me so well). It was noticeable with shoes on at the physiotherapy session that Camille was slapping her feet down a bit and clearly has work to do, but at home, bare foot, she is trotting along quite nicely.


When we did speak to Dr Danny, we were able to ask a couple of questions about a few things playing on our minds. Firstly, Hayley and in fact the Oncology doctor at Nemours Hospital had noticed that Camille’s left eyelid was a little slower when blinking than the right. You may not remember or even know this but the slowing eyelid was a sure fire symptom of Hydrocephalus and the Shunt being blocked. This wasn’t a concern for us as she is not presenting any other symptom; so therefore the concern was that tumour was affecting the area. Of course Dr Danny couldn’t rule anything out without an MRI scan and as he stated, it wasn’t a good idea to go for a scan as the radiation would cause all sorts of distortions on the image and also, a second general anaesthetic in a day would be inadvisable. So we just have to hold tight and keep an eye on her. To be honest, I can’t say that I’ve seen it once since that day and as Dr Danny has said, these things tend to get worse rather than coming and going.


This leads on to our second area that we covered with him; the next six to twelve months. As you can probably tell, we are already looking at every minor change or symptom and thinking the worst. When we finish treatment here, we will go into the monitoring phase which will last for years. Every three months, to begin with, Camille will have an MRI scan to see if the tumour has returned. Every three months, we will have a build up of pure fear and panic for the week or two before she goes into the MRI scanner and the week afterwards before we get the results. The first six to twelve months could be even more confusing as the radiation from Proton Therapy can cause all of these distortions on the scans which even the most experienced and talented professionals may not be able to define as tumour or radiation signals. It is going to be hell.


People always think that children or adults in Camille’s position will get diagnosed, undergo treatment and then be cured. It doesn’t work like that. In three years time, even assuming that Camille doesn’t have a reoccurrence; she will still be a diagnosed cancer sufferer, just in this case, one that is not having treatment. In ten years time, the same applies. You don’t escape cancer as a child; this will follow us for the rest of our lives, sitting closely behind our backs ready to ruin our lives once again. Don’t under estimate the pain and fear that we will endure every day of the next ten years.


Camille does enjoy the Proton Institute, because everyone makes her so welcome. She and Lucia especially enjoy the time they spend with Chrys Yates, the art teacher in resident. We did actually spend a few hours this week following up on a couple of recommendations. Chrys works as a volunteer at a wonderful art gallery called the Cummer Museum. There are multiple galleries, an outstanding garden that backs directly on to the St John’s River and an area where children can make and play with art. We went along after one of Camille’s treatments this week and both Hayley and I were a little disappointed that we couldn’t explore the fine art a little more; this would have been impossible with Mrs McShouty and Miss Wingey Von Wingerson in tow. Camille’s constant shouting of the words “I want to go hooooommmmeeeeeee!” resulted in us only scratching the surface of what the Cummer was all about.


Chrys also recommended a restaurant called Bisctottis. We popped in there this afternoon for a bite to eat; and although the food was great and the area of Avondale where the restaurant is situated was lovely, the heart burn I suffered with afterwards was no joke. Straight after the meal we went downtown to see Disney on Ice, a donation from someone for the kids at Proton. As I drove over the Main Street Bridge, my chest felt like someone was shoving multiple knives in through my ribs. Hayley asked, “How do you know it’s heart burn?” Good question!


Camille is funny; we were only twenty minutes into the Disney on Ice show when she began to ask “when is it finished?” The question because more and more regular, with increased decibel levels and a shift up an octave or two, until thankfully we hit the interval. It was then that we bartered with her for silence. Thankfully the second half was short and involved a cameo from Buzz Lightyear. Thanks Buzz……..thanks a million.


We are now heading into our last week of treatment. I’ve now changed our flights (that were originally booked for this weekend) to Saturday where we finally leave Jacksonville and head back home to the UK. I won’t lie to you; I’ve loved Florida, I’ve really enjoyed the time we have spent here even with the serious reason behind it. I’m not sure I would have been saying the same thing if we had been here in the height of summer. It’s been as high as 98 Fahrenheit this week, imagine what it would be like in July or August. When I write this next week, I’ll hopefully be sitting in my Living Room with a cold Shirley to keep me company, oh, and Hayley!