Tuesday, July 31, 2012

Send in the Clowns!

I am pretty sure that everyone, at least all of my Australian friends, will have a childhood memory involving going to the Show (Carnival/Fair) and playing 'The Clowns' in side show alley.

You all know the ones I mean?

With the creepy, goofy looking faces grinning at you wickedly, challenging you... The ones that look just like this.

Everyone knows which clowns I mean, everyone has seen them, everyone has played on them... they are part of our childhood and it doesn't matter how old you are, you played the clowns at least once when you were a kid.

Today, Nicola played the clowns for the first time.

Today we gave the girls a day off school and we all played hooky and we went out to Charters Towers because the Charters Towers show was on. It was much smaller than our local show (which we had decided not to go to), had about a tenth of the rides... but the important stuff was there. There was a Ferris Wheel, a couple of fast rides, baked potatoes... and The Clowns.

It was as we were getting ready to leave that I finally decided to let the girls play the clowns. You know, it wasn't all that long ago, at least, in my mind it wasn't all that long ago, that you got 3 turns for $5... now, at $5 a turn, it is hard to really say yes, especially when you know that they're going to walk away with some cheap plastic piece of junk that will end up in the trash within 15 minutes... but, it's still something that we do... and today, as a random spur of the moment decision, I decided to let Nicola have a go as well.

There wasn't a lot else she could really participate in at the show, she was too little for all the rides, or they weren't suitable for her disabilities... but I thought maybe this was something we could have fun with.

Well, she chose a Pink Panther and that was it. She was absolutely adamant that we had to 'doh dere'. So we did.

I handed her her first ball and I pointed to the mouth of the Pink Panther and I said "here Nicola, in here!"

Her whole little hand, wrapped around that ball, managed to fit inside the Pink Panther's mouth. She shoved her hand half way down it's throat before she let go.

Almost instantly her face broke out into the biggest grin and she threw her head back and started laughing. She clapped her hands and said "Dood! Dood dirl!"

"Yes, Darling, you are a good girl. You did so good! You're so smart!"

And we started again. We would hand her a ball, she would put her whole hand down into the Panther's throat and then she would let it drop. Pulling her hand back out, she would start clapping and telling us what a good girl she was.

And she was... she was a good girl. She was an incredible girl. She did so very, very well, and I am so very, very proud of her... but mostly, I am just so very happy that she got to experience this, she got to share it with her sisters, whom all cheered her on and clapped with her.

And after all of that, even though she only got a total of 14 points (the minimum to win the cheap plastic toy was 22) she walked away with a beautiful big pink and purple plush unicorn.

Apparently the person who was running the game was so suitably touched by Nicola's excitement and her participation, she wanted to give her something that was really good that she would be able to love.

All in all, everyone had a wonderful day, including Nicola. Lots of memories were made, including Nicola... and now, with four children in bed, I am sitting here reflecting on the day... and I am so, so, so very glad that we did it.

We just simply had fun...

All of us...


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.

Saturday, July 21, 2012

T'was a Thursday When The War Began...

I have this recurring dream/nightmare.

I dream that I am with my family. The location changes, sometimes we are at home, sometimes we are at the beach, sometimes we are with friends, sometimes we are in random places...

But no matter where we are, a war breaks out.

I mean full blown war. Invading soldiers with big guns, bombs dropping, people screaming. Devastation and heartache on a massive scale and I have no choice but to fight.

I realise what has happened, and my only purpose becomes to protect my children, to keep them safe, no matter what, which, believe me, is much easier said than done...

In my dreams I am not a true threat to the enemy... I am just a Mother trying to do what I can to protect my babies, they are soldiers trained to kill. They are fighting with weapons that I cannot use and I do not understand, they are trained and armed and equipped... and I am just a mother trying to protect those I love the most. I am outnumbered, out maneuvered, and out skilled.

They are dropping bombs and shooting at us and using gases and munition that I don't have... and I cannot fight back. I try to hide, but they find us. I try to run but they stop us. I cannot protect my children, I cannot protect my babies...

Those I love are harmed and I wake up.

At some point in the last week or so I have come to the conclusion that this is somewhat symbolic of my life.

My life is a war and I spend it trying to protect those I love the most. I try to protect my family, my children, my parents, my siblings... I try to shield them from this war...

Only this is no dream. I cannot just wake up and have the enemy fade away into a memory.

Just like in my dreams, I cannot see what I am fighting, I do not understand it and I don't know how to arm myself against it...

And just like in my dreams, those I love the most are the ones that are being hurt.

We are fighting so hard to give our other children the most normal life that we possibly can... and most of the time I think we are doing ok... but every now and then I see a little glimpse of the hurt that I think they try and hide from us, and it just breaks my heart.

We try hard to make sure that the girls get to do a lot of the things that their peers do. Both girls do dancing. Jessica does Highland and Ballet. Isabella does Ballet lessons and she's just started Gymnastics, which is something she has wanted to do all year.

We make sure that we don't miss sports days or dance recitals and we try to do normal things like play dates and birthday parties.

Most of the time we manage to keep things under control, and most of the time I think they are relatively happy and stable girls... but every now and then something happens, something slips in my carefully structured world and it all goes to pooki!

There wasn't a lot that we had planned for this weekend, but one of the important things that we had been looking forward to all week was attending the birthday party of the daughter of a very special friend today... something that both my big girls had been really excited about all week.

Yesterday, she had her routine bloods done, and they were all completely tanked. Her neutrophils are the lowest they have ever been, her haemoglobin is low again and she is bordering on needing a transfusion. Her pain tolerance levels have tanked, her 'happy drugs' don't seem to be working, and all in all she is just having a really really bad time of it. She hasn't coped with this last round of chemo at all.

Now, normally this wouldn't be such a big deal. Any other time one of us would bundle the girls into the car and head off to the party while the other stayed here... but today... I don't know.

Perhaps it's the fact that I was up most of the night with her crying and unsettled and I am running on almost empty today, so not totally confident with a long and lonely drive on the highway.

Perhaps it's the fact that the look on her face, her skin so pale, her eyes so dark and sad... it all just cried to me that I needed to stay here, with her, where she could see me and I could make sure she was ok...

I don't know what it was, but today I just couldn't do it. I couldn't pack them up and take them to a party an hour and a half out of town, not when she was so unwell and so unhappy.

Tonight my sister had a party at her house, and again, I just couldn't bring myself to go. I can't really explain it, but seeing Nicola looking so sick and so out of it just really bothers me. I didn't want to take her out, I wouldn't dare risk exposing her external factors let alone other people in case she got sick... yet I also couldn't bring myself to take the other girls and leave her here. Something in her eyes today just told me that I needed to stay close.

So, yet again, my girls miss out on something else that they wanted to do. Don't get me wrong, I tried to buy them off... I gave them ravioli for dinner, which is something of a treat because it's so expensive! I let them have lemonade and ice cream, I let them have a bubble bath with Jessica's special Princess Jelly Bubbles that Kieran gave her for her birthday.... and I let them have a movie at bed time...

But they know that they have missed out.

They were good girls, they didn't raise a fuss, they didn't cry or shout or have a tantrum, they didn't get upset or yell or anything else. They accepted it with the relatively good grace that they have always shown in these situations... and I think it was that that hurt me the most...

Such a graceful acceptance of the inevitable, such a grown up attitude and behavior in the face of adversity...

Once more they are casualties of war.

We are fighting an enemy that we cannot see, we cannot comprehend and we cannot fight. Or life has become a war and my biggest fear is that the casualties will be my children.

All of them.

No matter how hard I fight, I cannot protect them from the negative side of what we now call life. I worry about how they will handle everything, how they will cope with everything that is happening and everything that is yet to come.

I want them to grow up to be happy, I want them to know that they are loved and wanted and that they are important to us. They might not have Nicola's medical issues or disabilities, they may not have her cancer, but they are important to us, and we love them dearly.

How do we juggle all of their needs at once?

How do we chose which child's needs should be sacrificed in order to keep them all happy?

They are already prisoners of a war that is so far beyond anything that they could possibly understand... but how do we stop them from becoming casualties?

How do we fight this war?

How do we win?

Monday, July 16, 2012

The Baggage that Qantas Didn't Lose.

I am going to preface this by saying that this is a highly emotional post from me. It has been an incredibly long and difficult week. Nicola is in a downward spiral and I am surviving on minimal sleep and am supposed to be giving up caffeine and chocolate so nerves are very very frayed.

This post in no way is intended to hurt, upset, isolate or otherwise denigrate any other individual or subset of individuals. It is simply an expression of feelings that I have been struggling with and are now really coming to the surface.

If you are likely to be offended, please no not read on. Please do not read on then flame me or insult me for expressing my feelings. Thank you for your understanding.


How do you cope with the realisation that your life is just simply never going to be like anyone elses? That your trials are so hugely different that people struggle to imagine and the hope of any real comprehension is nothing but a pipe dream that is slowly fading to smoke?

It has been weighing on my mind for a while now that since Nicola's birth I struggle to make friends... most of my acquaintances seem to lump me and my life in the 'too hard' basket and move on, and I get that... there is not a whole lot of understanding of what my life is really like.

I have gotten quite good at dealing with the ignorance of strangers. I am used to it I guess. When we were leaving the Zoo in Melbourne I was with my friend Kirstin and there was a stranger who walked passed. He looked at Nicola, then did a double take. He looked again a third time and kept on staring as he moved away from us until he just about walked into a tree. The look on his face, well, I guess the only definition I can come up with is a bitter mix of contempt and disgust.

Kirstin was horrified by his response, and with a look of complete incredulity on her face she turned to me and she asked "Does that happen often?"

All I could say was "Yes."

It doesn't bother me much any more, I guess my skin has just gotten thicker. I remember once when I was leaving the Mater in Brisbane with Nicola in her stroller there was an older couple who passed us in the corridor. She nudged her husband and indicated toward Nicola and said "She's got a right funny face on her that one!" And I just lost it. I rounded on her with the fury of a mother scorned and I told her precisely what I thought of her ignorance, her rudeness and her plain stupidity!

It hurt me to think that there was someone who thought that my daughter was less than perfect.

To me she is my sun... and God knows, I spend enough time awake with her at night for her to be my moon too.

I guess that is why I think the trip to Melbourne was such a bitter pill to swallow for me. Everything we did, I was faced with the realisation that we were doing it because of Nicola, because she has cancer, because we were told to make our memories now.

Everything we did was with the knowledge that it may be the last chance we get to make these memories together, as a family.

On the weekend I was talking to a 'friend' (and I use that term rather loosely, really I guess we definitely are more like acquaintances) told me how lucky we were to have a free holiday.

I can say with complete honesty that I felt like I had been slapped in the face with a besser brick.
I mean... you've GOT to be kidding me... Right??


I looked at her and I said to her "Would you trade one of your children for a holiday?" At which point she laughed like I had made the biggest joke of the year.

I guess from her perspective it's not more than a joke, I mean, she's not faced with my reality is she?

But to me, it's not a joke, and that holiday most certainly wasn't 'free'.

Perhaps it didn't cost us a whole lot in terms of actual money spent... but at the end of the day, money can be recouped.

Our daughter's life cannot.

What we got wasn't really a holiday, it was a consolation prize. A "Gee, I'm sorry your daughter has this horrible life threatening medical condition and I'm sorry that she has got cancer that is likely to be untreatable... but because of all that we'll give you this holiday and it's all good!"

And more and more lately I'm starting to realise how incredibly short Nicola's straw really has been.

I see her 'peers' (Other Children with Costello Syndrome) who are reaching milestones... sitting up, standing, first steps, tube weaning, etc... most of them much younger than Nicola, and it reminds me again and again how far behind the 8 ball we are.

We are very very rapidly approaching Nicola's 4th birthday. At this age she should be able to sit, stand, run, walk, talk, interact... she should be able to do so much, yet she can't. She is not on par with normal children, she is not on par with other Costello Children... she is so far behind... and it hurts.

Don't get me wrong, I don't begrudge other parents their joy at their child reaching milestones... but sometimes, tonight especially, I can't help but sit back and ask "When is it going to be our turn?"

When will we get to celebrate milestones like everyone else?

I mean milestones other than 'first chemo', or 'first blood transfusion', or 'first tube replacement'.

We are nearing the end of Nicola's chemo regime, with only 5 weeks remaining, and I think that is exacerbating my feelings at the moment.

For the last 38 weeks we have cruised along in our own little world. We don't quite fit in anywhere, we are too complex for any support group to understand, so we kind of just drift along dealing with things in our own way...

But now, I see other families who have finished chemo and they're slipping back into a 'normal' life, and I just don't see how we can do that.

Even post chemo, our 'management' plans are more complex than everyone elses. Nicola will not be in remission. She will not be NED (No Evidence of Disease). She will still have a 10cm tumor in her pelvis. Where most kids go onto a monitoring regime of scans every 3 months, Nicola will be having scans every month... and every day in between will be filled with a feint cold fear of what the next scan will find.

So, we will be the parents with the child who still cannot sit, stand, walk or talk, who needs huge doses of strong pain medications and anti anxiety drugs just to get through every day, and we will live lives in constant fear of what is laying around the corner... all the while sitting back and watching everyone around us live their lives, celebrate their milestones and moving onward and upward.

I love my daughter and I cannot imagine my life without her. She brings us so much joy and happiness. She is cheeky and precocious and so very very precious... and the thought that there is a day looming in the future where I will not have her in my life just hurts me so very very badly...

Why can't, just for once, we have sunshine and lollipops for her, a ticker tape parade and 76 trombones and all that jazz?

Why does the time I get to spend with her have to be filled with so much hurt??

Wednesday, July 11, 2012

The Wish

Last week, we went on an epic adventure, the scale of which none of us has ever seen before!

Last week, we took Nicola on her Starlight Wish.

We didn't know what to wish for for her... it's not like she can just pipe up and tell us what her hearts desire is, so we had to stop and think about what we knew she liked, what she liked best, and what made her happiest... and really, it was summed up into two very simple things.

Nicola likes the cold and she likes her sisters.

We thought about what we could possibly ask for that would be something special, something memorable, something that would make her happy... and there was really only one thing that we could come up with.

A trip to the snow.

Thursday morning we left for our adventure. First flight from Townsville to Brisbane, second flight from Brisbane to Melbourne. Picked up a hire car and then found our hotel... at which point Michael and I fell into a heap and declared we were never travelling with four children, let alone one with additional needs ever again! :D

Friday morning Nicola's 'Cold Themed Holiday' started with a trip to meet the Penguins at Melbourne Aquarium.

After that we headed over to Hisense Arena for some lunch and then we got to surprise the girls with tickets to Disney on Ice.

They all thought the show was spectacular, even Nicola who watched the whole show, clapped, cheered and really just enjoyed herself, even though she was so incredibly tired and probably really just wanted to go to bed.

I think her favourite character was Minnie Mouse, she seemed to react best every time Minnie came out!

Saturday was THE day... the day that it was really all about. We were up at 5am to make sure we were packed, double and triple checking everything, then bundling poor sleeping little children through the cold and into the car to begin the drive up into the Mountains.

It didn't take as long as we had expected, but it was soooooooo cold on the way! We had to stop to clean up a sick Squeaky (apparently she dislikes mountain ranges!) and down in the pea soup thick fog on the ground that was frozen solid, I am pretty sure it was below zero... and we had to strip the poor little baby down to her bare bottom and clean her up with wetwipes before putting every possible layer of warmth on her we could get our hands on!

To say it was cold was an understatement... it was FREEZING!!!!

But we persevered up the range and soon enough the girls caught their first glimpse of snow. They started shouting and shrieking with every turn and all the snow they were finding. Even Nicola was getting in on the action with her own little shrieks and giggles and lots of frantic clapping.

All the girls had a brilliant time. They loved the snow... even Nicola got involved in the fun having a few good trips down the slopes on the Toboggan with her Daddy, which she thought was just incredible!

Sunday was a day of rest, a chance to slow down and breathe and share some quality time before Monday's big trip to Melbourne Zoo.

All of the girls loved the animals and the excitement of the day, it was cool enough for Nicola to be able to really enjoy being out and about in sunlight and really just being a part of all the action.

And of course, sharing it all with her very, very best friend, 'Dolly'.

Then it was time to go back to the hotel and pack. Tuesday morning saw us up bright and early, packing all our luggage and souvenirs into the hire car and then heading back to the airport.

The trip home, well, that was about as eventful, problematic and traumatic as it could possibly be... but we are home, at least for two nights... and oh, how wonderful it was to sleep in my own bed last night! Even the girls were so excited to be home! Nicola just about cried with joy when we carried her into her Wiggles Bed.

Tomorrow she goes back to Brisbane for another round of chemo. Our adventure was amazing, it was brilliant, it was exciting and it was fun filled... but tonight we are very firmly back in the realms of reality once more.