A few months ago we made a small DVD with Starlight for the Five Chefs dinners.
It was, to say at the very least, an amazing experience.
When I watched it for the first time I cried and probably teared up every time there after.
It is an emotional thing watching your family’s story on a big screen
but I do love this so much.
Now that the dinners are over I can share it with you.
Ivy’s endocrinologist came down to the ward, on the first Friday of our admission
and brought with her the most beautiful sunflower for the girl.
It seems that with a little luck,
a community of people sending good thoughts into the universe,
a doctor and a couple of politicians who are prepared to go out fighting for you
that you can change the world.
Our little piece of the world, anyhow
and yesterday we picked up our first prescription of human growth hormone – post appeal
and once again subsidised by the PBS.
just like the sunflower sitting in the corner of our hospital room,
a bright ray of sunshine pushing its way through the clouds of the last few months
and so it goes that the small girl can continue to grow.
Power to the people, I say!
The thing about Ivy, in case you didn’t know,
is that she doesn’t do things by halves.
When she puts her mind to something she will achieve it with flying colours,
when she commits to people, she does it with her whole heart
and when she gets sick, she does a fine job of it.
Two weeks ago, the girl got sick.
Some kind of terrible chest infection that left her so tired that she spent seven days sleeping it off.
Temperatures on temperatures and a rattly, no good cough.
Her doctor saw her often, making sure she was okay, hoping against all hopes that Ivy’s body would get with the program and rally.
Even with copious amounts of oral antibiotics and prednisone, we limped our way into the second week.
Her mouth full of ulcers and blisters on her skin,
her days were up and down at best.
Come Wednesday when we arrived for IVIG, I was worried.
Traditionally when Ivy has a lurgy the immunoglobulin makes her body respond in a most dramatic way.
The good doctor did everything in her power to make sure that didn’t happen
but we only made it through half the infusion
before Ivy started to complain that she felt unwell.
Then all holy hell broke loose.
The girl most certainly was not well.
She shook and shivered and cried out in pain
and generally looked about as bad as a person could look.
The medical team stabilised her and then tried to continue with the IVIG but within minutes it all started again.
It was scary.
I was scared
and I don’t think I scare that easily anymore when it comes to Ivy events.
I thought maybe some kind of reaction but reactions like that only ever really happen when there is infection.
I thought kidneys – her back hurt and her front, in all of the telltale places.
Still, once we stopped the immunoglobulin things kind of settled and we went home,
against my gut.
Big mistake – the night a blur of tears and pain and temperatures
and so we had to go back again the next morning to be admitted.
She had a UTI,
she had terrible sepsis (anyone who is interested in numbers a WCC of 30.6 and a CRP of 251 and a platelet count of only 196)
with a bug that can cause, amongst other things, endocarditis and meningitis
and she’s taken a very long time to recoup.
After Team Ivy Day she returned to the hospital to lather, rinse and repeat on the whole scary rigor episode.
With another antibiotic added in and another 48 hours, the girl was one thousand times better
and has remained that way, except for the arrival of another insidious lump.
Ivy and I are calling it the total body breakdown fiasco of 2013.
She’ll go to surgery tomorrow morning and then we will try the whole IVIG thing again.
The small girl put herself to bed super early tonight, feeling under the weather again, heart rate high.
“It’s the abscess” she told me as she closed her eyes.
Tomorrow can’t come soon enough, really.
Our local TV station were coming to report on Team Ivy Day this year
but at the last minute pulled out.
The journalist bumped to something more newsworthy, according to the big bosses.
It didn’t matter.
The kids at the school and the teachers rallied and made the day absolutely amazing.
I wanted the world to know about it.
I wanted to shout it out -
that we spend so much time focusing on the adolescents who do the wrong thing
that we forget about all of these wonderful teenagers, who are changing the world right now.
It’s not just about the money that is raised for the John Hunter Children’s Hospital on the day (which, by the way, was well over $5000 this year)
it’s that the kids care,
they make a difference,
they see outside of their own selves
and that is where the amazing really comes in.
Sure, there are some who don’t turn up, dont care, don’t try
but the vast majority of students pull out all of the stops.
They dress up, they donate, they put on dance items and sing,
they bake and volunteer
and they give the little people someone to look up to,
something to aspire to.
I love that we play a small part in bringing two communities together – the high school and the hospital.
I love that the students and the teachers make the day so special for Noah and for Ivy,
who, every year that this day is held, becomes a little more confident in herself
and understands better the beauty and kindness that surrounds her in these super heroes, fairies and other assorted characters.
I so wanted to share that with the world at large
but traditional media was not to be this year -
so I’ll share it here, with my people.
I hope you don’t mind too much the annual montage of photos – it’s the best way for me to be able to portray the day
but if not for you, then here are some of the highlights;
* Ivy spoke to the crowd of students for the first time and thanked them for everything -
along with her thanks, she told them that they all made her feel happy -
(no mean feat, as the small girl had been in the hospital, septic, since the Wednesday, quite miserable with life in general and was allowed a few hours gate leave for the day.
She lasted to within half an hour of it’s finish before she crashed in the most dramatic of ways).
* More teachers than ever took the plunge and dressed up – Ivy chose a geography teacher who had gone the full Joker costume – make-up and all as the winner of the teacher’s competition.
* Noah captained the student team, although they were flogged by the teachers in their now annual soccer match, it didn’t matter – he had a ball.
*Maddy, who has not uttered one note of song since her grandmother passed away, stood up and sang a duet.
You may think nothing of this but Maddy has the most beautiful voice, although not many know this because she has been too shy to sing in public
however, my house has been filled with her voice for almost all of her life.
When Ana came to stay and everything went to pot, the music just stopped.
To hear her sing again and in front of other people made my heart feel full
and I may have cried like a baby.
I have my excuses of course, I was tired and overwhelmed coming straight form the hospital to the school, with an unwell Ivy
but the truth was I was just so proud – of Maddy yes, (especially Maddy) but of all of the kids as well.
Once again, I cannot thank the high school students and their wonderful teachers enough for making Team Ivy Day such a bright spot in our year -
it gives me faith in people
and I love that, in a world that can seem so selfish and self indulgent some days,
that it’s these kids who give me hope that we can all look after each other,
give of ourselves
and show kindness to others, always.