1. Accept all things for what they are.
2. Make the best of the worst.
3. Laugh often.
4. Family is the best cure for the hospital blues.
5. Friends will help you to see the sun through the clouds.
6. Listen to your heart, go with your gut.
7. Allow yourself to feel.
8. Kindness is everywhere, if you take the time to notice it.
+++
On Monday we arrived at The Children’s Hospital at Westmead.
We met with the immunologist, who gave us a rundown of what would be happening with the girl.
She spoke with Dave and Ivy and I for a long time
and then she did a scratch test
followed by a dose of the lactoferrin.
It was a fraction of the original amount – just 1/100th of the 1gram she was originally prescribed.
Within twenty minutes, Ivy was red and itchy and grumpy.
There was alot of waiting on the first day,
alot of not knowing where we were
or what we were doing
and lots of tears – hers and mine.
There was also a fair bit of crazy, overtired giggling towards the end of the day.
It helped to ease the nerves.
(There are some iphone photos that have been included here. Leading me to believe that I need to improve my iphone photography skills a lot)
The room was quite large, with lovely artwork on the walls.
After an adjustment period, Ivy set about creating her own drawings.
I really love child inspired paintings.
Perfectly imperfect (my new favourite mantra).
The first day was far from smooth.
On day two the immunologist halved the dose and then halved that again.
It only seemed like a few grains of the fairydust, at 1/400th of the original
but the girl did not react.
Grandma arrived and she happily coloured in.
The immunologist was quietly excited and tossed up whether she would dose Ivy again that night.
At one stage there was a knock on the door,
some old friends came to pay a visit
and within minutes of their arrival
the clown doctors came.
(I LOVE the clown doctors).
Ivy and I laughed so much.
I’ve not seen the girl giggle so hard in such a long time.
We both needed that
and I was so thankful
that we found some happiness.
Part of the reaction for Ivy is a terribly upset stomach
and unfortunately her afternoon was filled with this.
The immunologist decided to leave the girl alone,
which I was very grateful for.
By Wednesday we had kind of found our feet
which was just as well because we needed to travel around the hospital a bit for tests.
I felt a bit strange being there – my heart racing and teary too.
Ivy took to the place like a duck to water though.
I learn from my girl every single day.
Dosing didn’t go so well
and twenty minutes later the girl was puffy, red and not in a good mood.
We had to wait to make sure that was the extent of the reaction
but after that we were given gate leave to celebrate Malachy’s 13th birthday.
Dave and the grandparents and all of the kids came down.
We went to the local park and had a birthday picnic.
It was nice.
Mal was happy and I loved seeing all of the kids.
It definitely helped to break up the week.
We met Janine, who is the Country Liason Officer.
She helped us to feel our way around the hospital
and when we returned from gate leave she had a birthday gift for Mal
and some things for the other kids too.
It was so nice of her to think of our family like that.
(Noah was too tall for the girls but clearly too short when he kneeled down for the photo)
All up, it was a lovely day.
Of course the hardest thing about gate leave is having to go back into the hospital.
Ivy and I missed everyone almost as soon as they had walked out the door.
I think, in a lot of ways,
it was an easier visit than when we have to go to our hospital.
mainly because Ivy was essentially well
and so we could go outside and move around the hospital freely if we wanted to.
Ivy loved them and warmed up straight away.
She was allowed to stay up late and eat a bag of chips well after bed time.
The best thing though was when she got away with sticking her tongue out at her mother (look at that cheeky face)
She played Angry Birds and generally partied with the girls.
She was tired the next morning and we had some tests that needed to be done
and the girl was a little bit stressed by it all
but with the morning came a most magical rainbow that danced across the carpet of the room.
Ivy stood in it for a long time
and then she said, “It’s William, he’s looking after us”.
Oh, my heart!
The day started with blood tests.
Chocolate milk fixes most things,
especially post blood test tears
The reaction was maybe a little less this day but we held steady at our minute dose.
Our Thursday went quickly
and the night,
well, the night was restless.
Dosing on Friday was interesting.
At first I thought her reaction was going to be less
but in the end, I think it was worse than the two days before.
The girl complained that her eyes were itchy, along with her face and her arms too.
It settled though with some medication and by mid morning we were enjoying a visit with
Denyseand a special bunny came along too.
We reviewed everything with the doctor after lunch
and then we were discharged.
I guess not much changed in some respects.
Ivy is no closer to being desensitised to the Lactoferrin,
although we know she can tolerate a little of it,
it is not at a therapeutic dose.
The future is uncertain.
We are down to talking about the bigger things, like bone marrow transplant,
although the immunologist assures me that we are not there yet.
I can’t think about that now.
I have to hold on to the little things and hope that they are enough.
There is so much ahead for Ivy.
More surgery, new medications and trials
but for tonight I am going to appreciate all that I have,
all that I have been given
and know that I am a little bit stronger than I thought I was a month ago
and so is the girl.
I just wanted to say thanks.
For your beautiful photos, for the gentle way you tell your story and for the grace you show when you are facing difficult times.
The magical rainbow.. oh my…xxx
My love to you all and a special healing hug to Miss Ivy.. she is incredible.
Glad it went so well. Very glad you are home. Wishing you had more answers. Still praying. Blessings.
1. I am still so ashamed we never got there, after I PROMISED we would.
2. I am ever so pleased so many others did not break promises and visted.
3. Happy birthday Mal!
4. That girl of yours – the strength of us all times 10.
5. I am so so glad you did the Westmead thing.
6. And yes, William. (My heart too!)
You guys are home?? Did i read that right? wonderful news
hope all is well at home and you and your family get some good time together! praying for your ivy girl – what a treasure she is.
you are definately stronger than you known – isnt it amazing how we get through things we could never imagine being able to – and when we are through them its quite amazing. I really know about this – life just isnt what we plan sometimes is it well or go how we want it to.
So if you dont mind i am going to take your 1-8 `’hospital survival guide” and apply it to my life right now – its all so very true. thank you tiff, thank you for sharing you sweet heart – i really appreciate you ! BIG HUGS – with a few tears too and a smile!
xoTiffany
Love and hugs xx
So glad we could brighten your day a little.
I am also glad that your visit wasnt as awful as you feared.
William……oh my………….
much much love
Tiff yet again you leave me with tears in my eyes at the strength you & your precious girl show in your endeavour to do all you can to keep her well.
Bless her little heart for her rainbow statement……..a true inspiration. And I always seem to find rainbows around somewhere when my boys are close in my thoughts too…..they are magical.
Wishing you both (& your precious family) the answers that you all deserve for the girl. Such a gorgeous little beauty.
xoxox
I wish I lived close enough to come and visit you. I miss you! (Is that weird?)
I am glad you’re out now and that it wasn’t a terrible week – insomuch as a week in hospital is a pretty bad way to spend a week anyway.
Happy Birthday Mal!
And I might have gotten teary at Ivy saying the rainbow was William. xx
Of course Will is looking after you!! And it’s lovely to have that pinged straight to your heart by his sister.
xxoo
Wonderful times and bad times.
Lovely photos and lovely friends
How nice that William came to visit via a rainbow.
Is it just the lactoferrin Ivy was tested for? Or other things too?
I’m amazed that the dose was taken right down to 1/400th.
Makes me think the original dose Ivy was getting must have been making her feel so very awful.
I’m glad you went and had this done.
How wonderful so many bloggy friends came along! Such a beautiful comment from Ivy about William – precious moment. xx
I love that rainbow. rainbows are so special, just like your beautiful girl with her beautiful blue eyes.
Beautiful Tiff and the photos are lovely as always. The rainbow is just amazing and of course Ivy knew who it was from.
Love the clown doctors. There should be more clown doctors.
Hi Tiff .. I love the rainbow connection and William.. How “old & wise” is the girl, hey!
On such a day, you certainly were blessed … And the Canon got it!!
It was my privilege to see you again & have that wonderful hug.. And meet one lovely lady, Miss Ivy.
She had done sooo well.. New people, not only doctors, visitors like me who chatted long with her mum.. Then, on about 3 PR people &
One E B .. With more eggs.. And more pics to be taken.
I just loved seeing you both, and meeting Dave!
The idea that she was “well” enough to partake in many of the hospital’s facilities is true.
It is an amazing & buzzing mini city.
Pity children and bubs are so sick …. Sad sights in some rooms.
Glad the flexible gate leave got you to celebrate a boy’s B’day and feel “connected”
You made me even more ready to get that photography thing happen! Thanks
Here’s my unexpected part of the visit.
I didn’t “want to leave”
Sounds crazy for a well person in a hospital .. So I took time to explore corridors, Operation Art, Many different things struck me..
Then I went into the Book Shop.. And a few books later I’d spent up… And then sent to my next place ( I didn’t really know why, just felt right)
I met with the person called Jill who is the volunteers’ co-ordinator. Told her I’d like to volunteer my teaching skills.
Yes! We’ve had a few retired teachers recently she told me.. And a few years ago decided that kids who’d missed lots of school need some in hospital catching up- other than what is provided by the DET school. It’s a program called Back on Track. I’m ok to do one day a week & I’ll be hearing back soon.
I mightn’t have been a successful blood donor ( sorry Ivy!) but I can do this .. Look who brought me to the role.. Ivy!!! Xxxx
Thank you for sharing all of this. You humble me with your strength. Ivy does the same.
Love to you all and a gentle hug from the UK.
So glad that it all went ok. Have been thinking of you all. Ivy is such a gorgeous, sweet gentle little girl and you did so well Tiff. So proud of you. By the way Ivy’s drawings are amazing! So detailed.
Your photos and your words always bring tears to my eyes – sometimes tears of joy, tears of sadness, tears of frustration, tears of ‘thank God it’s not us’, tears of sorrow. But mostly, tears of hope. This post of yours – this monster post – just bought a little of all those tears.
Love to you all
I love the rainbow and the girl’s interpretation of it. She is amazing and that photo is beautiful.
I’m glad it wasn’t too horrific.
Happy Birthday to Mal!
xx
Hi Tiff, I’ve been so out of touch! I can’t seem to get ‘three ring’ to open on my phone ,and I’m hardly ever online these days (thanks to a very active 6 month old). I feel like I’ve been so out of the loop. Just catching up today. Ivy melts my heart…
Thanks for a lovely post… what brilliant photos. And yes Ivy – I’m sure it’s William looking after you!
Sending hugs from Trinidad.