Friday, August 15, 2014

Eyesight update

We have had news recently that the growth in Harrison's eye - known as vasoproliferative tumour- may be a cancer. Dr's took some time to further check and we have had reassuring news that indeed the tumour is not cancerous. It is an aggressive benign tumour so there is still much time to be spent checking and monitoring. Eventually the eye will have to be operated on in some form and at that time the surgery will send his right eye blind too. Naturally, we are keen to delay this as long as Harrison is not in pain.
So the disneyland trip is now officially on - we have been given ok from every doctor to allow this trip to go ahead.
We plan to have a month in the USA seeing the various sites of Disney and the countryside - mostly in a giant rv .
Harrison's grandmother has taken an early retirement to fund this trip but we have had a few amazing people on our side donating and organising donations to cover Harrison's share of our costs. So far that equates to nearly $1900 dollars and we are very thankful . Once the final figure is in we will be naming and thanking our sponsors and donators here online and in person .

Flight centre are may now trying to work magic to get us fantastic flight deals and help with booking everything for our trip- as we literally put on hold doing everything until we had news re the eye growths .
Next step passport applications finalised and off on a big plane trip.
I for one spend a Lot of time thanking the stars for making this growth to be a benign one. I think my little boy has had enough to contend with as it is :)

So two more doses of intragam to go and we say Bon voyage. It's sad and exciting at the same time to do this trip.
I wish we just had 2 more years so Harrison was that much older to really remember everything of the trip and to allow us more time for all the things we want to achieve.
Harrison left eye February 2014 
Small vasoproliferative tumour

Harrison left eye June 2014 
Larger more complex vasoproliferative tumour growth 

Wednesday, June 11, 2014

A quick shout out to Katlyn!
Katlyn is about to undergo a bone marrow transplant. She has made it this far and we know how hard that struggle has been!!!  When a donor match is made which we hope is very quickly, we pray for her that it's a perfect Match and it takes quickly and  complication free!!!

Our thoughts are with you on this next phase and we know that you will conquer this hurdle  as you have all others !

To track her journey here is the link ...Katlyn's blog

Wednesday, May 28, 2014

The vision is dying and quickly! Sometimes it feels like its one step forward and 7 steps backwards.

What a roller coaster the last 3 months has been. Harrison has had his usual round of blood tests last year to work out if his immune function is going ok. We were very surprised with the result. His B cells which have somehow reached 50% don't actually seem to be doing what they should - meaning despite injections and immunisations, Harrison has not immunity - to anything! So the doctors (luckily) ruled out another bone marrow transplant and have placed him back on a cycle of IVIG - aka intragam. Its the stuff they syphon out of plasma that is pure antibodies. It is what is now keeping him well and reasonably infection free.
But wait there's more. In the midst of this turmoil and upset , we discovered at a routine eye exam in February that his left eye has a growth in it. Initially the doctors thought it was CMV - cytomeglovirus - and that would have spelled disaster for us. Had it have been that, we were for certain, having another bone marrow transplant. Luckily and after a biopsy, retinal eye scan and MRI, it proved to be a hyper vascular growth in the back of the eye.

Known as "Coats like fundus" - it is a growth caused by the blood vessels growing at the back of the eye causing some kind of lumpy growth. Unfortunately it is very very rare - (and I note here with just a drop of horror and sarcasm combined- how 'surprising' is it that Harrison should get something super rare on top of his already rare immune deficiency and retinitis combination.!!!!! ) The even more worrying part to this rare growth is that it has well and truly taken hold of his left eye leaving the eye completely blind and has started growing in the right eye. Something the eye specialists tell me is highly unusual and they now have to check him 3 monthly with lots of scans and tests.

We are nearly back to the 3 month mark and due to go down for the next anaesthetic and checkups again. On top of this Harrison has a cataract over the left eye that has finished off his vision anyway. Surgery and freezing are the only ways to stop the growth as without stopping it - well lets just say I want him to still have beautiful eyes to look at - and no surgery means literally losing his eyes!! That is not an option. It is incredibly frustrating, saddening and maddening that I as a parent cannot make this better for him. Its a bit of a kick in the teeth and we have been given now a deadline without a damn date!! Maybe 12 months. But we aren't really sure even if that long, say the doctors. as a family we are in shock, as I think like me , the rest of the family thought we might have lucked out and Harrison's vision would hang around for a few more years to come. The solution to our problem is no less complex. One way to stop the growth is to cryofreeze - however in freezing the growths it damages other good cells, and so will damage the little tiny bit of good vision he has left - currently 5 degrees of central vision only. It will damage the way he sees too - and so while he sees in a limited field he sees nearly as well as most of us do with the right eye. As an example of what vision he has left .. If you closed your left eye, and looked through a black drinking straw - that is the field he sees. His acuity - is about 3/12 ie what he can see clearly at 3 metres, we can see clearly at 12 metres. If the surgery happens his acuity could be significantly damaged and he would be able to barely see in front of him, let alone anything at distance. and if the growths are left he goes blind very quickly and it damages the eyeball itself. So here in lies our problem. Today is a pediatrician visit to discuss this all. and I am getting an approval for Harrison to travel to Disneyland. I am appealing to all and sundry for help to get us all there and finish off Harrison's visual bucket list. He adores Mickey Mouse - spends hour and hour watching youtube clips of old Mickey Mouse cartoons and when he saw the ad for Disneyland asked me to find in on the computer for him - the scoured the Disneyland web page and asked to go visit. How can I not grant that one wish? The plan is simple - hope to head off in September and travel in an RV for a month. An RV we can clean down and keep infection free - something we are unable to do travelling between and staying in various accommodations. My mum has blown me away this week - as she seems to do on occasion - by offering to retire early so that her superannuation can be used to fund this trip for us all. Its a gesture of unbelievable selflessness and one I could never ever repay. I hope that somewhere with a little ask from me someone can help us get there - even to fund Harrison's costs and we raise the money for the kids and my mum and myself to go take Harrison to see Disneyland. In the interim it is back to see doctors today, 2 July and 2 September with a few blood tests, intragam doses and eye exams in between . Here are a few photos of what the eyes look like in a retinal scan and the MRI image that clears shows the growth in his left eye .... and a few of him just being Harrison !!

Left eye through cataract seeing the growth



Growth again from a different angle


Right Eye showing the damage the retinitis pigmentosa has done - the black part is the dying and dead retina the part just left of centre that is still showing no blackness is the part Harrison sees from. The white spot above right of the clear bit with no rp damage is the start of the growth that can be seen in the left eye above and below

Left and right eye showing the retinal damage being done by this terrible disease !



Sunday, May 4, 2014

Our Uluru Adventure from 2013

Due to Harrisons vision going we took a trip to Uluru. One car, One camper Trailer, 4 kids and 2 adults. We drove an amazing 7,500 klm in 3 weeks but Harrison got to see with his siblings every step of the way by his side, a memory that he will never forget.,

Here is a visual display of that trip. The plan for now is get him to Disneyland . We were plannig by Sept 2015 but the recent news on his reapidly deteriorating sight means it has to be this year as he simply wont see it next year