15th to 21st June 2013
We are so extremely humbled and overwhelmed by your many beautiful comments. Dainere's gentle soul and exquisite words have touched so many people, we are all so blessed to have her in our lives.
This week has been mixed for her, she has had a couple of days where she appeared a little brighter but then has had some dark and horrible days.
The most difficult aspect of this disease is that it is so horrendous in the way that it is taking each and every little piece of her away from us.
It is comforting to see that the syringe driver is making her life easier and keeps her comfortable. However when moving her at all her little fragile face winces in pain, we give her breakthrough doses of morphine which I inject through her line. It was originally 2.5mg but has now been changed to 5mg to try to take the edge of the pain of movement.
She communicates with us through slight nods or shakes of her head or blinks of her eyes. Sometimes her faint little voice will say one or two words, hearing her voice is so beautiful.
The palliative care team are so wonderful, they provide us with the very best care they can and Dainere seems to have made an impression on them, as she does.
She still manages that totally incredible smile and it warms our hearts each time we see it.
Jarrett has now finished his Year 12 exams, he has mixed feelings about how he thinks he went. To have to face exams during such a difficult time is not easy but he too possesses some of the same qualities as Dainere and has shown perseverance and determination throughout.
Nalani is the same, she still has one exam remaining. She has achieved marvellous results from her exams so far, having displayed courage and strength throughout hers. As a parent I am proud and in awe of both Nalani and Jarrett.
Jarrett's fundraising for City2Surf for The Sydney Children's Hospital Foundation Brain Tumour Research Fund is going well. He has not quite achieved $15 000 yet but is hoping that during the next 50 days that remain until the race that many more donations will come in.
As Brain Tumour Research Funding is very little, it is only through people like Dainere and Jarrett that the research can be done. Brain Tumours are not as common as other cancers but they are the most lethal, so we need to raise these funds so that no more children will have to lose their lives.
Something wonderful that happened this week was that today on his Nana's Birthday, Jarrett was presented with the Pierre de Coubertin Award. This is such a huge honour for Jarrett and such a proud moment for the entire family.
The Pierre de Coubertin Awards are named after the founder of the modern Olympic Games and take place on an annual basis to recognise senior secondary students who demonstrate attributes consistent with Olympism through participation and commendable behaviour in sporting activities.
Again with deepest appreciation for your comments, we are so very touched by them.