A long road ahead…

Hi everyone,

First (again) thank you all for the messages of love and support though what has been a very difficult time for us. Rest assured whether it’s via SMS, Email, instant messaging (Facebook, msn, Skype etc) we are reading all of the messages of love and support but please understand that it’s quite overwhelming to respond to all of them.

From the start:
We had some health issues with Alex for a while now which progressed from some minor behavioural issues (put down to a new baby in the house), Vomiting which was accepted as gastro and then some “space out” that was potentially going to be assessed as epilepsy, with a 4 – 6 week wait for an outpatient referral.

Unfortunately in the meantime, his vision failed which was of MAJOR concern to everyone. So on the 3rd of January, we went back to the women’s and children’s hospital for further assessments. The Consultant called a Neurologist, The Neurologist requested a CT and/or MRI and the CT showed a huge (5 x 10 cm) tumour in his brain that was clearly causing some pressure related issues that would have accounted for all of the previously mentioned symptoms.

The diagnosis was made at roughly 1730 hrs and (to give an idea of how quickly things happened) I walked out of the operating theatre with him already under anaesthetic at 2130 hrs. “Go get some sleep” the Neurosurgeon said as I was leaving, YEAH RIGHT!

About 0220 the next morning, I was told that the surgery went well. They believed that they were successful in removing the majority, if not all of the tumour. Nothing unexpected occurred during the operation and that he was recovering well in PICU (Paediatric ICU). They got him into bed and stable, then I was allowed in.

The following week or so is somewhat of a blur, we had a lot of visitors, a lot of gifts and many, MANY well wishes from our friends, family and loved one’s from around the globe. For that we’d like to thank you all. The biggest issue arising from the tumour and subsequent surgery is that Alex is yet to regain his sight, but there is high hopes that the larger portion of this will return with time.

The pathology is now back and while it’s far from worst case scenario, we do need to go down the Chemotherapy path with the little man. We’ve had a couple of meetings with the Oncologist now and while short term things won’t be easy and we’ll be “off the radar” for patches but we’re looking towards a positive future. The tumour was a hybrid between a Glyoglioma and a PNET tumour, don’t consult Dr Google – he’s such a pessimist! We have been given these links of reputable sites

Many of you have already contacted either Jo or myself asking what you can do to help?
Right now, there’s not a lot to do but when we need it we will ask!
For now we’re just playing the waiting game…

We’ve had some friends very generously organise a cleaner to come through our house once a fortnight for us, we’ve got a steady stream of ready-made meals being dropped off to us by friends and family. We have had an amazing and extremely generous delivery from the local shopping centre of bread, Fruit and Veg and a voucher for the Butcher too so it would be remiss of me not to (sorry for sounding like and advert) thank Bakers Delight, Sams Fruit and Veg and St Agnes Quality Meats for their amazing and generous help.

All of that being said, in the coming month (or so) I’ll be organising some fund raising for the Little Heroes Foundation and I hope that many of you will find it in your hearts to donate generously (frankly even a few dollars makes a difference!) and reach the target goal which I’m in the process of figuring out. While it’s in some respects a private matter, this is certainly something that I never imagined would happen to us so I’m happy to assist in raising the profile of the cause and hopefully gather some needed funds to help future families in need of help.

It won’t be easy, I have a feeling it’s not going to be pretty…
But with your continued love, support and well wishes we will get through this difficult time.


  1. kimberly maider

    Jo and Phil it was such an honor to spend 5 days with you in hospital, and I truly believe with the positive attitude your family has you can get through ANYTHING. You were certainly an inspiration to me and James, and we will continue to do anything we can to ease your journey with love, prayers and support. God bless you guys, truly. 20 kisses to Alexander James. xxx

  2. Hi Phil, I must have typed this 5 times.

    Hospitalpjs.com was a company I started after our daughter spent most of two years in the Mater Childrens hospital in Brisbane. What I would like to do is donate some pj’s that are IV friendly for Alexander to make his treatment a little easier.

    If you get a chance you are welcome to call me on 0433 322 763, or email me at sales@hospitalpjs.com. to arrange the postal address and size.

    Wishing you and your family all the best. Amanda Clayton


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