8th to 14th June 2013
As Dainere is not well enough to write her Blog, I have again wanted to keep you all informed of how life is treating her. but firstly I would like to express mine and the family's deepest appreciation to Dainere's many followers for your humbling, touching and encouraging comments, I read them to Dainere, with each one, a beautiful smile enlightens her tiny face.
Here in Canberra we have had some dreadful weather with two days of rain, which I have to admit the garden needed but it was just miserable to look out at.
Dainere has had a tough week this week, her swallowing became more and more difficult and due to the many hours she was sleeping she was missing doses of her pain medication, so the decision, which she was also involved in (by nodding her head as a yes response) to insert a syringe driver was made.
A syringe driver is a small infusion pump used to gradually administer small amounts of medication to a patient. It is regularly used in palliative care to continuously administer analgesics and other drugs. By having this it prevents periods during which medication levels in the blood are too high or low and avoids the need to swallow.
The medication is administered subcutaneously (just underneath the skin), so Dainere has a small butterfly clip inserted in her thigh with a thin tube running up into the syringe driver. It is painless and takes the stress out of trying to swallow medication.
She has to have Ondansetron which is her anti-nausea medication every day, she has this as a dissolvable wafer on her tongue.
The shakes that she often speaks about is called Clonus which is a series of involuntary, rhythmic muscular contractions and relaxations. It is often the sign of a neurological condition, in Dainere's case it is the caused by the tumours on her spine.
She sleeps most of the day but when she is awake we are blessed by her beautiful smile. She is unable to assist with any body movement when dressing or being moved but when holding someone's hand her grip is extremely tight. She is a fighter and she is not going to give in to this disease easily.
The palliative care nurses are now visiting daily to change the medication in the syringe driver and check on pressure sores and any other needs she has. The level of care they provide is exceptional, it is a blessing to have them.
Jarrett is in the middle of his Year 12 exams at present and Nalani is also in the middle of her exams. They both possess the most beautiful natures and have taken on determined study ethics during what have been difficult days.
Dainere is now winning the footy tipping, that put another huge smile on her face as well as her Wests Tigers again winning. This week she entrusted Jarrett to do the tipping for her, he is hoping he has chosen well enough to keep her on top.
To those Blog followers who have donated to Jarrett's City2Surf Fundraising effort, thank you so very much, please keep sharing his link to as many people as possible, it is only through the money raised through the efforts of people like Dainere and Jarrett that the research can be done to attempt to find a cure. No child or their family should have to suffer through the horrors of this disease. Here again is his link http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90
If you have Facebook, apparently on The Everyday Hero Facebook Page Jarrett's Fundraising Story will be on there on Sunday 16th June, so like the page and then you can read all about it, like it, comment and share it.
This is one of Dainere's quotes that I would like to share with you this week. "When your days are grey and gloomy, those who love you the most will help you discover all the beautiful colours of the rainbow"