That brick wall…


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So week five has been and gone and what a week we’ve had. Reality has really hit home now and with each dose of Proton every day gets harder and harder. Can we come home now please?

It’s been a tough week. Jess has been getting more irritable, suffering from morning sickness and she has decided to go on a sleeping strike. The irritability and the non-sleeping has been tough on all of us and the sickness was a massive worry for Ben and I. Morning sickness was one of the very first symptoms that Jess presented back in March, so you can understand why Ben and I were very anxious about it all.

Her weekly MRI showed that the tumour had grown 5mm since July. This could be the reason why she’s had the morning sickness, or it could be down to the radiation. Who knows? It all seems to be guess work with Jess at the moment as we also think she is teething (give the girl a break). The doctors here are keeping a close eye on her and if her MRI next week shows that the tumour has grown even more they may yet decide to operate to get it back down to a more manageable size. Alternatively they may just decide to adjust her treatment plan to ensure that the radiation covers a larger area.

I was really hoping the tumour wouldn’t grow any more. However, this is typical behaviour of a craniopharyngioma. I mean, come on Sam, did you really think things would actually run smoothly for Jessica? What a silly question. The news of the extra growth did not come as a surprise; I guess it was just wishful thinking. I seem to be doing a lot of that.

Daily general anaesthetics are taking their toll on the little lady and I think this maybe why she is becoming more irritable and not sleeping great. Poor little love doesn’t know if she is coming or going. I hate to see her go through this each day, only 21 more Proton days to go.

On a happier note, we have got to know some great guys this week, mainly fellow kids and parents at the Proton clinic. It’s so nice to chat to people that are actually going through the same thing. Most parents talk about their kid’s cold, whereas we find ourselves asking each other about types of tumours…

We really do support each other through the good and the bad. I’m sure we will stay in close contact with these guys. We have Carly and Tyler with their brave little solider Tucker (yes, what a cool name). Alan with is beautiful little girlie Alicia. I’ve never seen a girl laugh, smile and giggle as much as Alicia. I’m taking her dancing in a few weeks. I cannot wait. Nicky with her brave little man Kieran and what a tough cookie Kieran is. I’m hoping to have a girlie night out with Nicky in a few weeks time. Whoop Whoop! Kane with his lad James. That boy is going to go far with all his ambitions. Finally, Jo with her brave little boy Luke. There is NO stopping Luke, he is 100mph!

I ask you to keep all the people I have listed above in your thoughts and prayers. These people have been my inspiration this week. What each and every one of them have been through is truly amazing. I doubt any of them will get to read my blog, but I just want to say how much I admire you all. Together we can beat this!

Like last week, we haven’t really done much outside of Jessica’s treatment and appointments. However, we have a busy weekend ahead. We are heading to Amelia Island’s Jazz festival on Sunday. Then after a day filled with Jazz we are taking Jess to a play date with a little boy called Cruises. Their house is right on the beach. Cruise is a little boy who is also having Proton treatment. While Jess and Cruise play, the plan is for Ben and I to have a nice glass of wine or two with his parents ( Drew and Jennifer). They also seem like really nice people.

Next week Nanny and Pops are coming to visit… YAY! Mum and Dad are very excited to be coming out to see us all. They are even more excited about seeing Jessica. Isn’t it funny how your parents seem to love your kids more? I can’t blame them though, Jess is rather loveable. I’m also looking forward to seeing them being the home bird that I am. Missing you Ma and Pa!

FYI – Got my tattoo done on Friday. Let’s hope it brings us a bit of good luck. After all, that is what the Hand of Fatima is a symbol for. Good luck, good health and strength. Boy do we need a bit of three at the moment.



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