Friday, 24 June 2016

I read over my last post just now and thought my posts are getting further apart these days. Now that Olive is getting older, there doesn't seem to be so much to 'report' on. Each day merges into the next, seemingly without a lot of significant detail, until you realise a few months have passed. But this time I do have a few things to talk about.

Firstly, the best news. Mum had an MRI of her brain recently and the results came back with no evidence of the melanoma! That's 9 months clear since her surgery! Such amazing news. This time last year, we didn't know if mum would be here a year from then. She had been told she had between 7 and 12 months without treatment. For her to not only still be here, but actually enjoying her life and being well, is a blessing we are incredibly thankful for every single day. Obviously everyone is New Zealand will know this (unless you've been living under a rock), but Pharmac has also announced it's funding of an immunotherapy drug called Opdivo for advanced stage melanoma patients. This is fantastic news as until now, New Zealand healthcare has had no funded options for advanced melanoma patients. People have been spending exorbitant amounts of money to try and save their own lives. Thanks to the brave and persistent actions of some very special people, and the rest of New Zealand getting behind them, melanoma patients in NZ now have a glimmer of hope.

On another note, we finally have a date for Olives MRI. We have wanted this done since she was a newborn. For anyone who doesn't know, the MRI is performed to check for melanin deposits on the brain or spine. Of the estimated 1 in 500,000 with a giant nevus, a small percentage of those will have internal deposits. This is called Neurocutaneous Melanocytosis (or NCM for short). In a small percentage again, those deposits can cause symptoms such as seizures or hydrocephalus, and other complications. Olive has never presented with any symptoms of NCM, but Eddie and I want to have all the information possible to provide Olive with the best healthcare.
We have been warned that occasionally an MRI may pick up something totally unrelated and to be aware of that possibility, though this is very rare. Even if Olive does have NCM, nothing will be done about it - it is basically covering all bases and knowing exactly how far her condition exceeds.

I have to admit, I am feeling rather nervous about it. I'd been telling myself it was because of the general anaesthesia having to be administered. None of my kids have ever had a GA. Neither have I. But in the last few days I have processed this differently. Meisha has been referred for a tonsillectomy  and the idea of a GA for her doesn't worry me so much. So i think now perhaps it is more the results I am anxious about. But that aside, I am relieved they are finally doing an MRI. Better the devil you know than the devil you don't - right?

While we wait for her appointment to roll around, we will be starting something new and exciting for Miss Olive. Swimming lessons! She started today and she was super pumped to be having big girl lessons! Through the email exchange for booking, I informed the swim school of her condition and reassured them that it is not contagious, does not hurt her, will not shed into the pool etc. They were extremely accommodating and the instructor was informed beforehand so there is no shock reaction when Olive is in her togs.

The build up to her first lesson far exceeded the reality. I had been quite nervous, simply because it was a new experience for Oli and another group of people to 'explain' her to. Olives togs have a section at the back which is cut out and it sits directly on top of her nevus, this exposing her most 'vulnerable' part of her skin. I did think twice before buying them for her, but there wasn't much of a choice really because they were all designed like that! And really, why should my girl miss out on a pair of super cute togs in favour of a full rash suit just becomes some people may not have manners and not stare?!

So we get to the pool and sit down to wait for her lesson. I take her pants and jumper off from over her togs and see the woman on the other side of the glass partition having a good old gawk at my daughters back and legs. I caught her eye and gave her a big smile.
The swim instructor soon informs us that a swim cap is necessary and next minute we're having a full blown crying fit from Miss Olive herself.  After 5 minutes or so of Olive crying and refusing to even entertain the idea of putting that demon hat anywhere near her angelic little head, I had almost conceded that 'great. What a waste of fkn time and money. We're going to spend a whole term just getting her in the bloody pool.'

I was just about ready to walk out and take her home then I thought nah screw this. And I yanked that dastardly cap on her head and dumped her into the pool with the instructor and left her to it. Thank god she stopped crying straight away - i hate inflicting Olive tantrums on anyone.

Not only did she stop crying, she did exactly what the instructor asked and I was very impressed with her compliance.

When she got out, she told me swimming is fun, and she wont cry next week!

Perhaps I should leave her for other people to sort out more often?

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