Oh Sandy…


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We have a new addition to the Duggan/Ward household – Sandy the dog! We arrived at Proton on our third day and one of the prostate cancer patients – who we had never met – had left a parcel for Jessica at the main reception. We opened it and out popped the biggest pink snugly dog.

At this point I would like to point out that Sandy is not an actual real dog but a toy one. Although, there is a notice at Proton saying that any unattended kids will get an espresso and a free puppy. That did make Ben and I chuckle.

Anyway, after receiving this kind gesture, we were left wondering who had left such a lovely gift and how very sweet of them it was! I was then left with the task of naming our new addition. As most of you know, we have some weird and wonderful names for all of Jessica’s toys.

Most of you would have met Rita by now. Jessica’s faithful friend who comes everywhere with us.  So, I came up with the name Sandy. I don’t know why, but the name just popped into my head.  The next day we actually met the lady who left Sandy for Jess and guess what her name is? Yep, Sandy… Must be the witchy side of me coming out again.

So that’s our first week of Proton done and dusted, only five more weeks to go. I think Jess is getting into the swing of it now and so are we. The first day was horrible, both Ben and I were having last minute doubts. Were we doing the right thing? It’s so easy to slip into panic mode when you have a sick child, but when we think about it, we don’t really have a lot of choice in the matter.

On our first day of Proton, Dr. Danny went through the risks and her treatment plan in much more detail. Jess’ tumour has re-grown to quite a substantial size, so the dose of radiation to her brain is pretty big. The beams are entering her head in three places; the top, the left and the right side. In these spots she will loose her hair, meaning she will have a funky mullet going on. The good news is that we have been told her hair will grow back fully.

He then went into the serious stuff. Jess’ pituitary gland will completely die off in due course, this we knew about. It will take a few months to happen so her team back home will monitor her and add further drugs as and when Jess needs them.

Her IQ level will be affected. They can’t say how or when but they have said that it will definitely be affected. Ben and I will keep on top of this and ensure she has all the help she needs. After all, this is where all the fundraising money will come into great use.

Dr. Danny doesn’t seem concerned about her eyesight or hearing although there’s a five per cent chance this could be affected. They are keeping a very close eye on Jess throughout her treatment with MRI scans and various tests on a weekly basis.

It is going to take up to a year before Proton will start working its magic on the tumour. We are all praying that the tumour doesn’t cause any problems between now and then. It may swell slightly just as long as it doesn’t start interfering with other parts of her brain we are all good.

Best-case scenario out of this treatment is that the Proton ensures that the tumour stays the size it is now. Best, best-case scenario is that Proton shrinks it slightly. The chances of this treatment giving us these scenarios is between 75% -80%, which is fantastic. Go on Jess you can do it! Lets kick this tumour’s big hairy ugly arse!

We have met some lovely families at Proton this week, some of which aren’t staying at the Ronald McDonald House. We met a lovely family on Tuesday. Their little boy was receiving Proton to help shrink a cancerous brain tumour.

I cannot remember what type of tumour he has, all I know is it’s a very aggressive form. Sadly, they didn’t have a very good MRI on Tuesday so they had to stop Proton and go home. This news really affected me as the parents were so positive that this was going to cure their precious little boy.

I can’t even imagine what they must be feeling right now. It makes me actually feel quite lucky which is saying something. So sad. This place is just full of heartbreaking stories. The kids are so strong and it makes me so angry to think there’s so many kids out there who don’t give a crap yet live healthy lives.

I try not to think about it as it gets me so cross. They need to spend a day here to show them just how lucky they are. That goes for some parents too. While I’m ranting I’m disgusted to hear that our Prime Minister has postponed putting a Proton clinic in the UK. Not by just a few months, not even a few years, but six years! I thought our country wanted to try to cure cancer…. er, hello.

Has he not seen the results walking out of Proton clinics here in America? Proton has given families hope and children back their lives. I realise it costs a lot of money and I know the UK is struggling at the moment, but seriously it’s a place that will not just cure the young, but also the old. A place that brings hope and comfort. A place where you are given the chance to say goodbye to cancer for good. This really could be a place where dreams do come true. That shouldn’t have a price tag, it should be a given.

Rant over…

We haven’t had any real adventures this week. We went to a place called Amelia Island last Saturday. This was so pretty; I was, however, a little disappointed that I didn’t find any sharks teeth on the beach as it’s famous for the teeth being washed up on the sand. Jess enjoyed paddling in the sea. Ben did a bit of body boarding and I soaked up some rays. Ben may have soaked up a little too many rays. He is only just getting over his sunburn. Man he was red….OUCH!

We will most defiantly be going back there. I haven’t yet managed to get my tattoo. I have a consultation next Wednesday so watch this space. I’m still keeping up with my dance classes and Ben is enjoying his nights out watching the football with some of the Dads here. NFL season proper starts this week so Ben is very excited and so is the rest of Jacksonville. They take their American Football very seriously out here.

We visited a place called St Augustine yesterday (Saturday) where enjoyed American style breakfast, mooched around the mass of quaint little shops and then hit the beach. We were all having such a lovely time playing on the beach until there were a few shark sightings not far from where we were paddling. I think it was safe to say that we packed up and hit the road quicker than you can say JAWS!

We are really trying to make the very most of our weekends now that Jess has started her treatment. We are limited to what we can do during the week. Jess is pretty grumpy after her treatments and if she doesn’t take a nap in the afternoons all hell breaks lose.

All in all not there’s much to report this week, although I seem to have written an essay. I’m so touched to hear that so many of you are reading my blog (feeling a little under pressure now). My Aunty Kathy (well, I say Aunty, but she’s is my Dad’s cousin) sent me a lovely email saying that I could write a book. Thinking about it, Ben and I would have enough material to write a book on our experiences and to tell our story. It most defiantly helps me to write it all down, all my thoughts and feelings and I’m pretty sure it has helped Ben given that writing is his passion, well that and cricket.

I actually used to read and enjoy reading weepy stories. For example My Sisters Keeper by Jodi Picoult. It’s such a sad story yet I couldn’t put the book down. Does that make me a weird person to enjoy these types of stories? I enjoyed the book so much that I dragged Ben along to the cinema to watch it, not the best film suggestion I’ve had. At the time I was two months pregnant, little did I know that I would actual be living it one day.

Life sometimes gets so bogged down in the details, you forget you are living it. There is always another appointment to be met, another bill to pay, another symptom presenting, another uneventful day to be notched onto the wooden wall. We have synchronized our watches, studied our calendars, existed in minutes, and completely forgotten to step back and see what we’ve accomplished.” Jodi Picoult (My Sisters Keeper)

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  1. Mel

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