Monday, 2 January 2012

The move begins

Well I said it was only going to be a couple of weeks before my last blog when in fact its been over 2 months!

So much has happened since I signed off last time and to be honest I just haven't had the motivation or time to write again. But I think its maybe time again as poor old Jaz is struggling with her vision to the point she can barely see.

Since Ive been away from blogland much to my family and friends delight I have secured a job in Rangiora our old home town, it means in 5 days we leave this lovely place and head back down to christchurch.
As much as it pains me to leave I do understand that Jasmine needs quality of life and more support than I can give her on my own. We have created some very close friends that I now class as some of my closest and I hope to always be in contact with them.
Takapuna Beach

Hot water beach Coromandel

Jaz has been through some tough times, she now suffers from a debilitating condition called Parinaud Syndrome probably caused by severe hydrocephalous and consequences of past treatment. Sadly no one will commit to any positive or negative outlook which leaves her with double vision, minimal eye muscle control and blurred vision. She permanently wears an eye patch and has had her lens prescription strengthened. Time is now needed to see if her condition corrects itself, Hydrocephalous should not be a problem after her latest operation where they pushed a hole in the bottom of her third ventricle.
On top of that she is now completely off all steroids, after being on them for so long it will take her adrenal glands up to 6 months to operate properly again meaning she needs to sleep all the time! Brain tumours really are a curse and after 2011 I wonder how much more we can take.
Thats it on tumours for today, I always said that sick or not Im happy she is just still here with me.
Sneak Preview of the new house

My new vegetable garden
So the shift begins with the girls flying to Christchurch on Thursday and Jaz, Phoebe and I will drive down after the truck collects our goodies on Friday. We plan to be in Rangiora to view the house for the first time in the flesh on Tuesday.
I am looking forward kicking back and enjoying some time with the girls settling in to our new home. (thats another blog!!)

I have pretty much packed everything, Jaz has been great and has done her best and its really just those little bits and pieces that we need left to pack. Tomorrow I will take the bike and ride to Gulf Harbour for the last time, one of the things I will miss is the amount of hills around here that have been great for my training.

I think Im just about done!! There is so much more I could add but lets save that for another time.

We are safe, almost packed, very sad to be leaving great mates and beautiful scenery but excited about seeing our friends and families in the South Island.

Ill be back :)


Tuesday, 18 October 2011

Time for a break

Hi all

Now that Ja z has started writing again I thought I might take a blogging break!!! Ill be back in a couple of weeks!!!

Check out Jasmines Blog

Bye for now

Tuesday, 11 October 2011

Happy Birthday Phoebe

Well its been 3 years today since beautiful Phoebe was born. I remember the day really well, probably better than Caitlin and Molly's day purely because Phoebe took a little longer than the other girls. But lets not go into to many details!!!!

Sandy and Luke came up for the long weekend so we were able to have a real party with family on Sunday, Phoebes latest fad is Pirates so Jaz put together a great pirate ship cake along with other Pirate treats and we all stuffed ourselves on fairy bread and cake!!

Jaz has had her ups and downs. Her vision hasn't been the best which makes her feel awful. We went back to hospital on Saturday morning as she could hardly see and after a few hours they decided to put her back on the nasty steroids.They seem to give her relief fairly quickly but after only a few days her vision is troubling her again so its off to the doctors again tomorrow.

To finish I thought Id post a few pics of little P. We all love her to bits. Being the youngest she holds a special place in all our hearts. Its amazing to see how far she has come in 3 years!!

Saturday, 1 October 2011

Back in Hospital

After all that good news last week poor old Jaz ended up back in hospital.

After suffering a terrible headache along with other side effects I took her into hospital on Sunday and she was operated again on Tuesday. A build up of brain water or cerebrospinal fluid was causing terrible pressure in her head (Hydrocephalus).

I want to thank our friends Lisa and Paul who stepped up and looked after the kids while I visited Jaz. Her operation went well and I was able to bring her home yesterday. Our Oncology Nurse who has become my hero this year has said it will take at least 4 weeks for the fluid levels to reduce back to a comfortable level.

Jaz seems a little beaten since the operation, it is very hard to stay optimistic and positive when things like this keep happening. Bloody tumours I curse the day (my birthday last year) our GP rang and broke the news.

In 2 months time Jaz will have another MRI. Its pretty key in the grand scheme of things, will the tumour be smaller (result of Radiotherapy), the discolouration on her cerebellum I hope will be confirmed as a consequence of radiotherapy and will the new drain created by this weeks operation be functioning as it should be. I hope that someone out there gives us a break and lets us have the Christmas that we deserve.

Crikey I've been a bit grim and I apologise. Ward 83 "Neurology Ward" is a tough place to visit and certainly puts life in perspective! Apart from Jaz we are all pretty healthy and have more than we really need. Things could be a lot worst.

Thats it from me its time to watch the English take on the Scots in a Northern hemisphere slug out. If we are lucky one of them might even score a try!!!

Well done Tonga

Go the Warriors!!! and thanks GB for the postcard :)


Friday, 23 September 2011

The What ifs!!

Its been another huge couple of weeks on the home front testing our little family unit to the limit.
Poor old Jaz has been pretty sick, double vision with lots of fatigue and headaches. After a stint in A&E. Oncology decided to bring forward her routine MRI Scan. A couple of days later we received a call from our Oncology Nurse. That's when the "what ifs" came to haunt us.

Isn't it funny how we torture ourselves with worst case scenarios? I'm not going to go into the details of Jasmines results but to be fair they sounded pretty awful. Our meeting with the specialist to discuss her MRI was another 10 days leaving us both together and as individuals to create some pretty scary what ifs!!

Where do we live? When will this thing beat her? How will we cope? Will I ever see my girls grow up? Should we move close to family in Christchurch? What will I do for a job? Christchurch doesn't seem to offer much should we just stay here??
Life seemed pretty grim based on one phone call and one persons opinion combined with our imagined worst case it was hard to imagine a life together going forward.
The appointment finally arrived on Wednesday 1.40pm. With the girls at school and daycare Jaz and I headed into the city early and enjoyed lunch, shopping and a brief visit to the Art centre. For 2 hours Jaz and I enjoyed being us, we shopped laughed and enjoyed the freedom that comes from not having kids. Normality until we entered the hospital grounds then the fear, what ifs and tears started again.

The appointment was delayed 30 minutes while they discussed her scan and then the moment came. How would they tell us? What if.......? The Specialist was the nicest guy, very calming one of those Doctors that respects and understands his patients. But the words that came out of his mouth didn't make sense? Jaz was crying and then asked "did you say the tumour is dying"? "yes, but things can change and we need to continue treatment with regular MRIs until we are sure you are safe" "its early days and there is still a blood supply, the battle isn't over but we are heading in the right direction!"
All of a sudden the what ifs had changed from negatives to positives. We might have a future and Jaz has a great chance of getting better.

We have tortured ourselves for weeks and now after one meeting we feel like all of that hard work is starting to pay off.
One thing I have learnt from this experience is the importance of having positive people around you and the person suffering their battle. Dealing with death is tough and can be very lonely, watching the world go by. Instead of living it feels like you are just existing. Getting through the days until the next appointment or scan. So receiving an email or text makes a huge difference. They dont have to be in the same town or even country. Just knowing that there is someone else out there batting for your team makes it all a little easier.

Have a great weekend go the All Blacks and the Mighty Vodafone Warriors!!!