This morning she is nervous
and her behaviour reflects this.
I am too.
She knows tomorrow is infusion day -
our first without a general anaesthetic.
Our progress has been slow and so we have ended by doing an additional four to our original plan
and it has been good.
The girl has been the happiest I have ever seen her,
without the stress of infusion days
but now we are moving towards our goal of being able to do them at home again
and I am looking forward to that.
What I hope will happen, what I’m wishing for with all of my heart
is that over the last eight weeks, with all of the therapy
and the medical play
and the rest from the anxiety and worry
that we have been able to break that all consuming fight or flight response
and that Ivy will be able to once more use her amazing coping skills (and I mine)
to make that leap into firstly the needles with sedation
and finally without.
We have spent time just holding the butterfly needle and “seeing it for what it is” -
a thin sliver of metal straw and some plastic that will sting for a minute but helps her body to fight
and we have been talking about adrenaline and endorphins;
Her: ” Why, when I breathe, do I feel more relaxed?”
Me: “Because you have endorphins that are released to help you and that stops the adrenaline from making you feel scared”.
Her: “Oh, so the adrenaline is like a mean dog and the endorphins are like a kind person, who pats and strokes him until he feels happy and doesn’t want to bite anymore?”
She is insanely in touch with her own body.
She is also very hard on herself;
“I want it to work. I want to do the needles at home but if in three weeks (four weeks, nine weeks, seven weeks - the numbers change with each conversation)
I can’t relax I want to talk to [the paed] about going back to IVIG”.
As her mother I can’t think of anything worse than having to find IV access every three weeks
or all of the side effects and complications that go along with it
but all I can do is listen and try to advise.
It’s her body, after all and ultimately she will need to learn advocacy for herself
but at 7 1/2, I think I should still be able to guide her.
I tell her everyone understands how this might be scary
and that our awesome play therapist and lovely pain doctor will go as slow as she needs.
Ivy can be determined though and her eyes glaze over whenever I mention it -
I feel like I’m being placated by a tiny pacifist.
Time will tell, I suppose.
For now, we are just going to concentrate on ‘stroking the dog’
and getting through tomorrow.
The needles make her cry.
I make her cry.
Especially on Mondays and Thursdays.
On those days she has three.
Mondays and Thursdays are quickly becoming my least favourite days.
I’d like to say it’s getting easier (they tell me it will),
that she can see that it only hurts for a minute
and that she is calm and understanding
but it’s not like that.
Not like that at all.
All of her coping skills are gone.
Sucked up by the toll of long term hospitalisation.
I’m not sure they will ever come back
or if she will need to relearn or formulate new ones.
Probably the latter.
We both need new skills, I think.
It’s more like this:
We wake -
she as late as she can.
She asks me straight up which treatments she will need on that day
and I tell her -
“the immunoglobulin, the interferon and the growth hormone”
while she counts on her fingers, fine and straight as piano keys.
“That’s three” she’ll say
and I’ll nod and watch for her reaction
but usually she just braces her shoulders squarely and silently drinks her hot tea
and I am left to wonder what she is thinking.
We ignore it then and she goes to school
and I do my thing
but we both silently fester and worry the day away
so that when the afternoon comes we are balls of nervous energy.
She knows the routine now
(daily, three times a week and twice weekly injections for almost a month – I guess you learn quickly):
change into something comfortable
have afternoon tea,
while I fuss and make up tinctures
and draw viscous clear fluid into syringes, noting expiry dates and batch numbers as I go.
She never watches.
The other kids play their part, grabbing things I need, bits I’ve forgotten,
I have a little team, which is both comforting and disconcerting at once.
When we are both ready she’ll find a comfortable space and I’ll try to find mine.
I think of all of the men and women I looked after, during a stint in palliative care
when I was a real honest-to-goodness nurse (not a nurse-mother)
and the little subcutaneous needles I placed in wrinkled, wasted bellies
so I could administer slow release morphine
and the relief that floated across their faces as the medicine began to weave its magic
and tell myself over and over that it’s just the same.
It’s not though, is it?
Not when it’s your own child.
I’ll try different tactics on different days.
I tell myself (and her) that this is the lesser of two evils
and that we will get better at it as time goes on
and that we have to do this because we have no other choices.
I tell her it’s nothing much, just a small sting
but I’m not fooling anyone – least of all her.
The physical part is just one side of this.
Mostly I just let it be okay to hurt.
Sometimes nothing you say or do makes any difference.
Some days nothing takes the hurts away.
The needle is thin and has two wings on either side.
It’s called a butterfly for its looks.
I think it should be called a wasp.
Why do we give awful things pretty names anyway?
When I clean her belly with the cold sterile swab, she starts to cry.
Her first instinct is to curl herself into the foetal position and not let anyone near her
and so we begin to force an unfurling.
Sometimes I can use just words but most of the time I need help.
One sister will hold one hand
a brother holds the other
and I position myself so that she can’t bring her knees up
lest she knocks the needle as it slides into place.
I’ve learnt that if I look her in the eye then I shake
and a shaky hand is no good for needling
so I soothe her with my words and concentrate on her belly
and the needle that needs to find its way – straight and true.
This is not a quiet time.
The girl sobs.
She sobs and she begs and she says things that break my heart.
“I’ll be good” she screams
and “please, don’t hurt me any more”
and my least favourite – ”I’m so scared, Mummy, so, so scared”
and there are days when the other kids are rattled and angry with me
and days where things feel better
and days when I sob too.
Sometimes I don’t know why I’m doing this and I need to take a deep breath;
It’s easy to forget that without these medications life would be harder for the girl.
Just all round harder.
Once the needle is in though and the infusion is started I kiss the sore spots.
Mostly the tears stop then
but some days they leak for hours afterwards,
small hiccups of grief escape her as she accepts that this is her life right now
and those are the really bad days.
For the both of us.
It takes a long time to write but truly, it’s all over in minutes
and I remind myself of that every day.
In and going by the time it would take me to buckle her into her car seat for the hour long drive to the hospital.
Over by the time it would take to wait for a doctor to come and find a vein
and hope that they get the stick first time.
It helps to think of it like that.
It helps thinking about the good things that have come from this.
She has a diary where she keeps her secret thoughts,
although they’re rarely secret for long.
She shows us often, which I think might be her way of communicating when words fail her.
Monday’s entry was this:
“I am going to have 3 needells (needles) today
the orinj (orange) one that stings the most
and the grothe (growth) hormon(e).
I am like a pin cooshun (cushion)”.
She is sadly wise, my girl.
Do pin cushions become hard and weathered, I wonder.
Or is their material initially resistant but with time relents to the tiny constant pushing and breaking of each
fibre until one day there is just no more give.
I hope she doesn’t feel like a pin cushion forever.
Last week we were offered an opportunity to meet with a journalist from The Today Show,
to talk about immune deficiency
and the need for blood donors.
Blood donation is so simple and so important to kids like Ivy, who need ongoing therapy
and yet, so few people do it.
I know that Australia has strict guidelines and for many that will exclude them
but for others in the healthy population it’s an easy way to help someone else.
So, when the opportunity came up to talk about it, I said yes
and yesterday was the big day.
Filming was in the city so we had to be up and ready to go early.
Ivy chose her outfit very carefully.
My little mini fashionista.
It was just under zero degrees when we left
but we soon warmed up.
We drove and then caught a train.
The big girls came too.
The boys chose to stay behind, with Dave.
It was an adventure in itself.
When we arrived at Town hall, we met with the wonderful Jemma from the Australian Red Cross Blood Service and with the crew from Today,
who were all really lovely too.
The blood donor centre at Town Hall is massive and very busy
but as with all of the donor centres I have had the privilege to visit, all of the people were very kind.
Some of the volunteers offered the girls milkshakes and brought food too, while we waited for everything to be set up.
We met Emma, the journalist, who is this amazing little pocket rocket and is very passionate about blood donation.
I knew I would like her straight away.
Ivy was not so sure.
I’d love to say that the small girl has confidence and happily slides into each new situation
but it’s not like that for her.
Ivy is very shy to begin with
and I think having so many doctors poke and prod at her of late has left her wary of most people
and to top it off she was still not feeling great
but Emma, like anyone who wants to get to know Ivy, started trying to break down the barriers
and it worked.
Emma wanted to donate while the cameras were rolling and Ivy watched as they placed the needle.
The girl thought that was pretty cool.
When asked, she decided Emma looked brave and wouldn’t cry
and she was right.
Emma was very brave.
The donation itself only took about ten minutes.
Once that part was filmed Ivy presented Emma with some flowers to say ‘thank you’.
Emma grabbed a milkshake to go and we started walking up to Hyde park for the second part of the filming.
Did you know that people like Jemma from The Australian Blood Service work hard every day,
asking people in high profile positions to lend some of their time to promote blood donation
and of all of the celebrities asked only very few will lend their time.
Emma is one of those amazing people who believes that community service is a vital part of their businees
and I will always be thankful to her and others like her
who try to encourage awareness.
The Today Show is a very high profile television show in Australia
and I really hope that by telling Ivy’s story we can help too.
I feel lucky to be a part of something that is important to, not only Ivy and I
but many other people as well.
Having a child with immune deficiency is a hard thing -
watching and worrying over Ivy because of it can be exhausting, stressful
It would be really easy to get caught up in that.
(Sometimes I do)
but through Ivy’s need for immunoglobulin we have met some wonderful people,
made lovely friends
and had some brilliant opportunities as well
and I love that by letting others know about my special girl,
we are hopefully giving something back.
After I waffled on and they’d finished with my interview Emma and the crew set about getting some footage of the girl.
She was quite happy to be with Emma but as soon as the camera was there and the big fluffy microphone
Ivy clammed up and began to look frightened.
She wouldn’t talk and she wouldn’t look at Emma.
I could tell she was starting to feel tired and ordinary too.
So, Maddy was sent in to the rescue and soon the girl was talking about her rabbits happily.
The best part was when the girl was encouraged to chase the birds.
She had alot of fun
and Emma and Maddy were swinging her between them, high into the air
which is one of Ivy’s most favourite things in the world.
It will be a sad day when she grows too big for that.
They wanted Ivy to say something at the end of the filming and with the bribe of a new Barbie
(just as any talent would expect payment for endorsement – she’s learning fast)
We said our thank yous and goodbyes (Emma is also the face for David Jones and she needed to go there next, she’s also interviewing Nicole Ritchie on the weekend)
the girls, Jemma and I went to lunch
and then made our way back to the train station.
Ivy was exhausted and once we were back in the car for the final leg, she slept.
World Blood Donors Day is on the 14th of June (coincidentally, Imogen and Madeline’s 16th birthday and their first that they are able to donate blood themselves. They have big plans for that day)
and it looks as though the interview will go to air around that time.
Hopefully channel nine will let us know.
I’m just about to start Ivy’s infusion for this afternoon, a medicine that would not be possible
if not for the blood and plasma that donors give.
We really are very lucky indeed.