Sunday, October 30, 2011


Yesterday I did what h3as so far been one of the hardest things I have ever had to do in my life. I hugged and kissed three of my four children, told them I loved them and I would miss them terribly, and then I turned around and I walked away. I don't know when I will see them again.

I really don't remember that I have ever felt so heartbroken or desolate at going away from them... but I cried most of the flight... and of course, it had to be the one flight I've taken in the past 18 months where I didn't have any of my familiar flight staff, so there were lots of questions, which lead to lots more tears, and generally just a miserable flight in general.

Presenting to the Emergency Department in Brisbane was a bit surreal. We weren't kept waiting, the first doctor we got that did the paperwork for our transfer was one that treated Nicola when she was very little, and then we met the oncologist.

And then we started waiting...

And waiting...

And waiting.

24 hours on we are still in some what of a holding pattern.

We have seen the oncologists and we have seen the pain doctors and we have seen the surgeon. We have something of an initial plan... we just have to wait for the timing to be able to get everyone together to make it happen.

Nicola needs to go into theatre. She needs a central line for IV access, as well as biopsies of the primary mass in her pelvis, her bones and her bone marrow and she needs to have nefrostomy bags put in to drain her kidneys because the tumor has occluded her uretera's completely and her kidneys are under pressure.

The bad news is that the tumor is completely unoperable. The sheer size of it and the fact that is impacting on nearly every major organ in her little body means that they cannot safely cut it out.

We have to hope that chemotherapy and radiation can shrink it enough to make surgical removal a viable option.

But we can't start chemo or radiation until we know exactly what kind of cancer it is that we are dealing with. They are fairly confident that it is a rhabdomyosarcoma, but they need to be certain, and they also need to know how far it has spread.

But before we can find any of that out we are waiting for a theater space.

It all seems so absolutely surreal. Three days ago we were talking about taking our first real family holiday, trying to get a few days at the beach with our girls, trying to give them a sense of normalcy. Three days ago we were arguing about money and getting our bills paid, what we wanted for dinner, were the girls eating enough veges, and which way was the best route to drive to do the school run.

Now, our lives have been turned upside down, inside out and back to front and I don't know which way is which any more.

So, we wait for direction. We wait for answers. We wait for hope...

We just keep waiting...

And waiting...

And waiting.


Kaz said...

You don't know me but I just want you to know that Nicola and you all are in my thoughts and prayers. Sending healing thoughts and strength your way.

Karen x

Shay said...

You don't know me. I'm on the other side of the world but I am praying for your little girl and your whole family. <3

Cally said...

I remember reading about Nicola on EB and I am so sorry to hear of this latest development :( I am praying for Nicola and your family.

It is so strange that a disease first reported in an Australian paediatric publication has so little support! Really sad to be honest :(

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