Dear Immunologist,

I just want you to know that I think you are very intelligent.

I know that is important to you.

You seek that acknowledgement from us every time we have cause to see you.

The immune system is extremely complex to understand and I take my hat off to anyone who can take a bunch of cells and know them in such an intricate way.

I also acknowledge that you have done some amazing research in your time and that you have indeed seen many, many families with immune deficiency

and yes, some of them are far worse off than Ivy and us.

I appreciate that Ivy is not text book but  at the same time not unique.

Thank you for pointing that out time and time again.

Thank you for treating her case and us like we are insignificant to you.

Thank you also for letting us know that you believe that Ivy’s team are doing the right thing

and then contradicting yourself by telling us that you are changing their care course because you believe it to be wrong.

That’s really special.

All of those subjects are not necessary to rehash, especially when you tell us you don’t have time for us.

Unfortunately your people skills leave a lot to be desired.

Now, there are going to be people who say that I have no right to say that, including my supposedly supportive husband

but when you sit there and insinuate (all be it in a very sweet, overly nice, doctor – like way)

that I am not smart enough to understand my daughter’s disease process, well, I kind of take offence to that.

I also want you to know that beginning a conversation with “I don’t have time to answer your questions because I am late for a very important meeting” is not a great way to start an appointment, that you made with us.

I have had a gut full of doctors who are “too busy” to explain things and address our concerns (which you believe to be insignificant) -

just ask the paed.

He is always too busy as well and I am at the end of my tether.

Belittling my concerns in regards to my daughter’s illness is counter productive when you tell me to do my job and let you do yours.

I am her mother and the mother to six other children.

That is my job.

If my daughter is sick and missing school because you are not doing your job properly, that is my problem.

If my daughter is in hospital because the doctors are not doing their jobs properly and she and my other children are suffering, that is my problem.

If she is worried, tired, hurting in any way shape or form, it is my job to try to understand why she feels those things and then do something about them.

If that includes understanding the immune system, even in the most simple of terms, that’s my job.

Also, if I want to research and understand it, that is my choice and my right as a human being.

Please do not tell me that I am just a lowly parent that I should  shut up and listen to your theories and your directives of her care because you are the doctor.

Big whoop.

Doctor is just another title and a way for you to make yourself out to be a better person than the majority of the population.

Yes, you went to university and you did things tough while you earned your degree(s)

You work extremely hard, I understand that.

I have a double degree too but you don’t see me using that as an excuse to make you feel that things that are important to you are not worth a minute of my time.

I have been right about  almost everything so far – even though I am just the mother.

So before you tell me to shut up and listen, perhaps you should take a leaf from your own book.

Please do not tell me that I am over thinking things and over complicating things

and don’t tell me to stop making assumptions.

The reason I come to my own conclusions about things is because of miscommunication by doctors who think too much of themselves.

If you and Ivy’s other medical ‘team’ members were clear and non contradictory about her treatment plan

then perhaps I would be able to take a more relaxed view on the fact that my daughter cycles through illness without resolve every four to six weeks.

Perhaps I wouldn’t become so pent up about having to disrupt everyone’s life while Ivy and I sit in the hospital for days on end,

with doctors who have  no intentions of moving forward.

If my daughter was not in pain and ill from infection and inflammation that has been an issue since September -

post operative to a Hickman’s line removal (also one of your plans that you told me would be in her best interests)

then maybe Ivy’s condition would be less of an issue for me and we could all get on with our lives.

Thank you for prescribing a medication for Ivy  that she cannot tolerate.

When I  tell you she vomits upon ingestion of said medication I’m not lying

and if she vomits, I have no choice but to again hospitalise her.

What a joyful thing that will be to be taking her back to the hospital again

to lather rinse and repeat.

I’m just Ivy’s mother.

I have nothing better to do

and Ivy is just a case for you to play with.

I know that now

and will that fix the problem at all?

Will a vomiting, adrenally compromised child be able to then clear an infection, I wonder.

Thank you for telling me that you understand when I start to cry in your appointment.

I’m very sorry but how could you or any other doctor fully comprehend what our family, Ivy and I go through on any given day unles you are living it?

You do not understand.

You sit behind your desk telling me not to make assumptions and yet, you are doing exactly the same thing.

I appreciate your meeting causing an insurmountable rift between my husband and I.

I was ever so happy to hear him tell me that you can do what ever you want to my child and I am powerless.

I appreciate that he thinks so much of you and so little of me that he would threaten me with Community Services involvement if I did not comply to your plan

of treating Ivy with the medication that makes her vomit until there is nothing left and then some.

That truly was the highlight of my day.

Finally, dear Immunologist,

thank you for putting me back in my place by telling me I have no right to be a part of a case conference between doctors.

I appreciate being told that the only way we would be participating in a group meeting with Ivy’s ‘team’

would be after the doctors had met privately and then it would  only be so that we could be authorised how to treat Ivy.

Thank you but I think I will pass on that wonderful opportunity

and just for the records I think I will also pass on chasing you up for another appointment, that you requested.

You want me to stop complicating things, fine.

I’ll start by eliminating doctors like you.