It's Not Easy

Mar 14 2011

Sunday night and all seems a little more normal in Jacksonville than the last week would have suggested. Camille’s second week of treatment is over with and after last weekend’s scare about her shunt, we’ve been glad to have our little girl back, even if it has come at a price, the re-introduction of her NG Tube.


We believe that Camille was under the weather due to a tummy bug that has since presented itself with Hayley, but the bug for Camille was enough to put her off food once again. She’d been doing so well; sitting down every meal time at the table and eating as much as she mentally could. Her daily intake of calories was being hit by chocolate buttons and milky stars alone and everything else was a bonus. After last weekend, after the sickness, the chocolate and food were not going to pass her lips. The NG tube was an inevitable conclusion and Dr Danny was in full support but he does seem keen to make this insertion a temporary measure. She really didn’t want it put back in either, but with her having general anaesthetic every day, there is ample opportunity to whip that little blighter up her nose without her knowing a thing. Since then, she has had nightly feeds and her whole state of mind seems to have got better. I guess for her the pressure is off a little and in many ways for us too. We don’t have to force down the medicine (in the nicest possible way), we don’t have to push chocolate on her first thing in the morning to ensure she gets something before treatment.


Hayley’s had a rough week. The internet is a wonderful thing but there is a lot of information on it that is opinion rather than fact and lots of opinions are pretty unstructured. It’s a bit hypocritical of me to comment as this blog could well be construed as exactly that and I know that I have made some blunders writing this weekly diary. Nevertheless, what Hayley read upset her, probably not a huge amount but enough to tip her over the edge. You see, we may be nearly two years since Camille was diagnosed, and after many rounds of chemotherapy, twenty operations and now Proton Therapy; but for Hayley the pain is still as fresh as it was in 2009. This week has been the accumulation of many fears and the sudden realisation that soon we are going to be at the end of treatment and where do we turn then. The tumour may be gone, but Camille will not be cured, she won’t be cured for a very long time. Hayley has shed a few tears this week, probably many more behind closed doors. This realisation for me that Hayley will never get over this has come as a little bit of a surprise, but it shouldn’t have done. Every day after we get home, Hayley will be looking for signs of reoccurrence, every quarter Hayley will be building herself up to get the results of a scan that holds our future in its hands. I try and explain rationally what we have to do but I know I am failing miserably.


I have to do what I can to ensure that we uncover every stone in an attempt to prevent Camille’s tumour coming back. This week I was able to have a conversation with a doctor from the University of Florida who is running a clinical trial for post radiation chemotherapy on Ependymomas. It was a great conversation and we covered a lot of detail, but it seems that we will not be gaining anything by going down this route, Radiotherapy after a full resection is still the best treatment route that Camille could have and that’s where we will be when we leave Florida. I’ve had the opportunity to read two large papers on this and another study; one thing that came out of it was a clear indication that Camille had a GTR (Gross Total Resection) after her third operation by Mr Mallucci. This gives her a better chance than anything else; this is what we must hang on to.


I also had the opportunity this week to sit down with Dr Danny and go through her treatment plan for Proton Therapy. We’ve gone down the aggressive route and as Dr Danny has said, we can be rest assured that we have given Camille every chance of event free survival possible by going down this aggressive route. It does however mean that the risks of deficits are once again higher than recommended. Things like blindness, damage to the central nerves etc are all around the 5% mark. It may not seem like a very high percentage but Dr Danny will have treated more than twenty Ependymoma patients so they are significant enough. That weighed up with a reoccurrence is no comparison, so after a difficult decision, we have decided to go down that route. We can bail out, even by a little bit, right up to the final day of treatment.


I mentioned earlier that Hayley has caught the bug that had Camille so poorly last week. Yesterday, I was in charge of entertaining the girls as Hayley was laid in bed all day with sickness and diarrhoea. Without a thought for my goodwife, I took the girls to the wonderful St John’s Town Center where we visited Barnes & Noble, the book store. We sat and looked at books for a while, selecting a book each to take home. Lucia went for a book on the Human Body as she just needs to know these things and Camille went for The Cat in the Hat. We’re off to Universal Studios next weekend where the girls can enjoy the Dr Seuss world; The Cat in the Hat was a good choice. After we left Barnes & Noble we went across to the Mochi Frozen Yoghurt store. Wowser Rooney! On entry, the happy staff member behind the till gives you a stack of little cups where you can go over to the frozen yoghurt pumps to sample each type. Once you’ve decided which one you like, you grab a big tub and fill her up with as much as you want. You can then go over and add every kind of accompaniment that you can imagine, from crushed cookies, fruit, sweets and sauces. I have fallen in love with a store named Mochi. It’s a good job I’m running six days a week out here otherwise I would be as big as a house. I’ve worked it out; Mochi is about two miles from our apartment meaning a round trip will be four miles. Perfect.


We spent today at Jacksonville Zoo. Hayley and I are not really zoo kind of people, but Lucia loves it. Camille was completely uninterested too, but we endured every type of rattlesnake, toad and whatever else. It was actually quite a good zoo with lots of big animals to see. There was a slight surprise to understand that not only was I at risk of Alligator attacks as I skip merrily around my running route, but also the Florida Panther may take a fancy to my voluptuous  rump. That also reminds me; we also found out that the bugs that were the scourge of our last apartment can actually fly! The moment I found out was like when Dr Who realised the Daleks could go upstairs.


Finally, I just wanted to send my best to my cousin Stevie who is in hospital in England at the moment. He’s going through a little bit of a rough time himself  but hopefully the news today will enable him to get better soon and able to concentrate on his wedding (stag-do) and new house. Chin up Peachy.