Thursday, July 26, 2012



It seems insignificant doesn't it?

It's just a number... and an itty bitty number at that.

It's not something grand like Ten Thousand Seven Hundred and Fifty Two.

It's not evil like Six, Six, Six...

It's not naughty like Sixty Nine...

It's just a little number sitting there, all sweet and uneven.

To me it is a count down.

As of today, there are only three more chemo sessions remaining.

After next week there will only be two...

And after that there will only be one...

And what happens then?

For the last 10 months our lives have been dictated by her treatments, her blood counts, her appointments...

We have spent one third of our time wrapped in a bubble, shielding Nicola from the outside world out of fear she would get sick while her blood counts were too low.

We have watched her grow sicker, watched her lose weight, watched her grow gaunt and shadowy, and watched the smile slowly fade from her eyes.

We have lived a roller coaster of emotions roaring from the greatest of highs to the lowest lows as we have watched her, cared for her, tried to protect her and loved her fiercely.

Now we face a day just around the corner where this will all change. There will be no more trips to the hospital three times a week, no more weekly chemo treatments, no more purple rubber gloves, no more flying to Brisbane every three weeks...

She will no longer be cytotoxic, she will no longer be such an infection risk, and she will no longer be quite so isolated from her sisters.

Hopefully she will gain a bit of weight, the constant nausea will subside, and her hair will continue to regrow. It is already starting to regrow, she has this gorgeous little layer of peach fuzz all over her head. Tonight we even washed her hair with shampoo and conditioner! We've done it all along, even when she was as bald as... but tonight it just seemed even more poignant.

God willing, her beautiful smile will make it all the way back to her eyes.

There are some things that won't change.

She will still be on massive amounts of pain relief that seem to get larger with every blink. She will still be tired a lot more than she was previously, and she will still have a massive tumor growing inside her abdomen.

She still won't be able to sit unaided, to stand under her own strength, or to take those precious tentative first steps... only now we no longer cling to the hope that one day she will. The tumor on the Psoas muscle makes any movement of her legs far too painful.

Instead of being able to relax with the end of treatment, instead we begin a very very anxious wait for what her doctors are almost certain is inevitable, the regrowth of the tumor. Every day that passes will carry with it the sickening feeling of dread that the monster inside her is going to rear it's ugly head again, and where do we take our battle then?

Once again we enter the land of the unknown, trekking away slowly along a path we don't know without a map to guide us.

I feel anxious at the thought of it, at times I feel positively sick with fear at what will be coming... I wish I could get a remote control for life so I could just pause on that perfect moment where she is happy, everyone is happy, and stay in that moment forever.

Of course, this journey has had some blessings. I have learned a lot of things. I have learned a level of patience that I didn't know was possible for me. I am not generally a person who is happy to sit and wait... yet that is what I have done for the last 10 months. I have learned that even when I feel like I have nothing left to give, I can still pick myself up, put on a brave face and just keep on moving forward. I have learned courage I didn't know I had, because it takes a whole lot of courage to walk into a room after a scan when you have been praying for the best but fear the worst.

I have also learned that there are people that care. There is a whole lot of love in this community and in this world, and there are a whole lot of people who are truly genuinely willing to share that love without expecting anything in return.

We recently got an update from the 'Reaching Out In Love' Appeal and they have done so much, they have put in such a phenomenally amazing effort! We are so, so, so, so, so VERY close to being able to take Nicola to Disneyland! It is amazing! Time is starting to run out, but we are confident that with a little luck and a whole lot of love we will be over the line in time to make such a momentous trip while she can still travel.

But until then, we are back to just sweet little three. In just three more treatments our status quo changes. Soon it will be two... and then it will be one... and then, well...

Only God knows.

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