It was a short visit this time.

Just three days in the hospital.

We’re home now and recovering.

Slowly,

the girl – still not herself.

The trial off the antibiotics well and truly failed,

Ivy found herself with staph in her ears

and staph in her blood.

Clearly this is  not getting any better

or any easier

and I am at that awful fork in the road part of this journey.

The immunologist

and the paed

have decided that it is time to shake things up again.

Plan, B or C or maybe plan Z,

I’ve lost count with the number of plans Ivy has had thrust upon her.

Forgive me,

all I know is that not many have worked.

The plan is

to wipe out her immune system altogether.

It’s nothing, says the infectious diseases doctor.

Just a monthly infusion to kill off her own cells

and then replace them with the IVIG.

Simple, right?

No.

Not simple

and very scary – for me anyway,

the person who has to make the decision to kill off my daughter’s own immune system.

Firstly, Ivy will need to be taken off the IVIG,

wait until that has left her system,

have an extended stay in hospital,

while they

test all of her imunoglobulin levels again,

do a rapid wean from the prednisone to make her blister up,

biopsy the blisters (again)

and wait.

I’m not sure

but I think she will be made to wait

without the Intragam,

out in the community,

during her first year of big school,

while they work out if wiping out her own system is feasible,

make application (yes, another one)

and work out a treatment plan.

With or without IV antibiotic coverage,

I’m not sure it matters,

my current feelings are that it would be disastrous.

If she qualifies for the treatment

then she will start the infusions.

First infusion has a 10% death rate.

Complications include heart failure, respiratory distress, increased risk of infection

and let me tell you,

Ivy does complications,

she does them with a flare for the dramatic.

I think I’m entitled to be a little weary.

It’s not a cure, either.

It is just another patch.

The theory is that by knocking out her own immune system, it will stop her b cells from attacking her body.

This will hopefully (no guarantees)  switch off the pemphigus

and then (in a perfect world)

she will wean off the prednisone to maintenance dose

because the doctors are ‘sure’ that it’s the prednisone causing her ear infections to return

but it’s not a cure.

Eventually the b cell production will ramp up again and the autoimmune disease will return

and so will the blisters.

I feel like hitting my head against a brick wall.

Ivy had infection issues long before the Prednisone or the Mycophenolate,

long before the pemphigus

or the diagnosis of immune deficiency

and the immunologist has said before

that if it were the prednisone,

there would be secondary infections on top of primary infections,

which is not the case

and

oh.my.goodness.i’m.so.confused.somedays.

When I mentioned that I was not prepared to jump into something like that until I was sure it was the right thing for Ivy

I was told that most parents,

when they were told that their child needed more tests or therapies,

would just say ‘oh, okay’ (yes, doctor, whatever you say, doctor).

Funny, I don’t remember traveling back in time when people just followed orders and doctors were considered gods.

The time has come though, where a decision needs to be made.

I can either let Ivy live like she has been – with the antibiotics and the IVIG and the occasional infections, that floor her little body

or I can risk everything,

I can risk Ivy.

I’m no closer to choosing which way to go

most days I just feel sick to my stomach.