Saturday, February 11, 2012

The Stars of the Show.

So, after a comment on my last blog entry it occurred to me that I talk a lot about my family, yet I've never actually 'introduced' my family. So tonight, I am going to take some time to do that.

Meet Jessica.

Jessica is my oldest daughter. She is five years old, turning 6. She loves Barbies, My Little Ponies and her cat Emmaline. She loves dancing and learns Ballet, Jazz and Highland. She has just started in Grade One and she loves school, loves to learn and loves her friends. She is beautiful and smart and incredibly wonderful and she makes me so very very proud that she is my little girl.

Now I would like you to meet Isabella.

Isabella is 4 and has just started in Kindy. She loves Barbie and Dora, Tinkerbell and her puppy Silvermist. She loves dancing and learns Ballet and Jazz and she will be starting Gymnastics as soon as life settles down a little. She is bright and funny and smart and oh so very very cheeky! She lives life a mile a minute and never slows down and when Isabella is around there is never a silent moment, but she is one of those rare beautiful little souls who just has a natural ability to make everyone around her feel happy and loved.

This is Alyssa - aka - "Squeaky"

Alyssa just turned one at the end of January. She is crazy about Dora and loves food, and idolizes her big sisters. She is a little trouble maker with a cheeky smile who can crawl faster than Daddy can walk. She is warm and snugly and gives the most wonderful cuddles and big wet baby kisses.

From not long after Alyssa was born, Nicola has made it very clear that Alyssa is HER 'bubba'. Now, a year later, Nicola has developed her own hand sign that is just especially for her Bubba Squeaky.

Of course, everyone knows the Star of this show. Princess Nicola.

3 years, 5 months and 6 days old, and as cheeky as any little monkey. She is psychopathically attached to The Wiggles, loves her sisters, chocolate custard and hates green vegetables. She is smart and warm and has her own incredibly gorgeous personality and a very infectious smile that she loves to share.

Together they are my beautiful girls. They are my heart and soul and the center of my universe. They are what keeps me going through every day. Every single day they make me incredibly proud that they are mine. <3

Friday, February 10, 2012

50400 minutes...

So we have finished our first week of radiation therapy... four days down... 5 weeks to go.

5 weeks...

35 days...

840 hours...

50400 minutes...

I am soooooo not going to make it through this journey with my sanity intact!

At the end of week 1 I have had less than 10 hours sleep in total, Nicola's anxiety has escalated out of control. She seems to be trying desperately to cling to any semblance of routine that she can get, so she has determined that nurses doing her obs have to do it in the correct order. O2 Sats first, then blood pressure on the left leg, then temperature, in both ears, first left then right. If they try to deviate from that routine, heaven help them, as we all discovered today!

Thankfully a quick consultation with the consultant has seen an increase in her anti-anxiety medications and I am hoping against hope that she starts to relax a little.

It's hard for her though. She is so routine driven, so attached to 'her' life and 'her' ways of doing things that she doesn't cope well when any part of that is changed, and here we haven't just changed a little part of it, we've just shattered her entire world dynamic.

We have taken away her home, her bed, her belongings, her routine, her Squeaky, her sisters and her Daddy... and she is so very aware of everything that is gone!

Last night she cried in her sleep until close to 1am. It wasn't a loud, sobbing kind of cry, but the quiet little whimpers. About 1.45am she woke up and decided she wanted her Squeaky sister, and then it started. 5 hours of tantrums, melt downs and screaming fits because she wanted everything that was hers and Mummy just couldn't produce it.

I just hope that we get new accommodation soon, for her sake. At least giving her back her Daddy and her sisters will give her back some sense of normalcy!

So, anyway, we're back to the end of her first week of radiation.

I think so far, physically she seems to be handling it pretty well. There has been a marked increase in her saliva production which is caused by the repeated GA's and her stridor has gotten a little worse, when she actually sleeps... but all in all, she seems to be doing ok, or at least so I thought.

The Anesthetist that had her today was concerned because he doesn't think her airways are going to hold up to the pressure of the repeat anesthetics, and he wants an action plan put in place before she starts treatment next week as to what will happen 'when' her airways fail during a procedure.

But, other than that, we have the weekend to ourselves. Well, at least, Nicola has the weekend to herself, I just have to fit in with her plans... but I'm hoping tomorrow morning will bring some time away from the hospital grounds, maybe a trip into the city because it's easy to get to from here, and a spot of shopping. Anything that is semi normal and not revolving around the chaos that we have had here for the last 5 days.

I would really really like a little sleep, but I'm not too sure that will happen!

But I guess it doesn't hurt to hope, right??

Thursday, February 9, 2012

Sleep Finished.

I know that I often see a lot more potential in my child than other people. I consider her to be incredibly smart. Even if her abilities have been doubted. They see a little girl who cannot walk or talk, I see a miracle who needs no words.

But every now and then she pulls something out of her hat that truly surprises even me.

A couple of weeks ago she was watching Dora the Explorer with her Squeaky Sister and when they started singing the alphabet song (A, B, C, D, E, F, G) she was doing the hand signs for Twinkle Twinkle Little Star.

If you have no idea why that's clever, sing the two of them and maybe you'll figure it out! ;)

Today though, today was priceless. This morning, sitting in the Day Procedure Ward waiting to go for her radiation, she tried to use applied logic and reasoning on me!

Now, this is a child who cannot talk, and who, because of severe muscle contractures and spasticity in her limbs, uses very limited signs and noises to communicate with the outside world.

She was signing to me to tell me that she was hungry. Two signs, one for time, one for food. The meaning was simple, it was time for food.

Because she was being fasted for her anesthetic, I couldn't feed her, so I was trying to explain that she couldn't eat yet, she had to wait until after her radiation, after we did our big walk to the other hospital.

Every time I tried to explain something to her, she would just shake her head and make her sound for no.

Finally, she held her hand up telling me to stop, so I stopped and asked her what was wrong. She signed to me, 'sleep'.

I said "Sleep? No, Sleep is finished Nicola."

She made her sound for yes and nodded her head, then she signed 'sleep' followed by 'finished'.

"Yes, sleep is finished."

She again signs 'sleep' and 'finished', followed this time by 'time' and 'food'.

Her logic was really very simple to understand.

Sleep is finished, now it is time for food.

She is getting to be more and more aware of her surroundings of what is going on, but she still has massive trust issues with medical staff. When it's time for her to have her obs done, she will allow me to do them, she will even turn them into some kind of a game, but she will not let the nurses touch her. There are a few exceptions to that rule, but in general she just has massive trust problems with the medical staff.

She seems to be finding it emotionally very difficult to be down here, and to be separated from the rest of her family, or at least, from the most important part of her family, her Squeaky Sister.

Last night she cried and fussed until 1am, when, with the help of some good quality medications, she finally fell into a restless sleep, which ended around 4am when the medication wore off.

After that, her signs were abundantly clear.

'More Dadda'

'More Sisters'

'More Squeaky'

We were told today that it seems we can get into family accommodation as of next week (cross fingers and toes!) which will be brilliant because if we can make the finances work out, it means we can bring the rest of the family down and be together down here while Nicola is doing her treatment, something that I think will benefit them all hugely! It will be good for Jessica and Isabella to see that Nicola is coming home every night and she really is okay, and it will be wonderful for Nicola to have her sisters around for company and play!

Not to mention the fact that it will be good for me to have the rest of them here, for both company and cuddles!

I am discovering it is very lonely being down here alone and it is so incredibly stressful not getting any kind of break from Nicola. At least at home Michael could take her for an hour or two and barricade the girls to the other end of the house so I could get at least a little sleep, here that just doesn't happen, she is always within arms reach, always cranky and sleep deprivation is already starting to set in.

Caffeine is my friend!!!

Tomorrow is her last treatment for the week which means her lines are taken out over the weekend so we can get some down time. I am silently praying for lots and lots of sleep, but hoping that we will at least get enough of a break that we can duck off to the shops and get away from the hospital environment for a while.

It will be good for both of us to have some 'normal time'.

Or, at least, as normal as we can get!

Monday, February 6, 2012

Just Wait and See.

So, this morning, I decided to drive my big girl to school. Daddy was going to do it so I had more time to pack, except she really wanted me to take her, and how could I resist.

Naturally, the one day of all days I wanted it to be a smooth straight forward drive (clear across town!!) I end up having to contend with a car accident (not mine!), a train crawling through the crossing and a convoy of trucks that blocked two sets of traffic lights... but, eventually we got to school and found a park in the crush of crazed parents trying to escape after first bell had gone.

That was when things started to go bad...

Jessica crawled into the front seat, wrapped her tiny arms around me and started sobbing. Not just crying, but deep, hysterical, body wracking sobbing. When I finally managed to get her to calm down enough to talk to me, she pulled away and looked into my eyes, her own little blue eyes full of tears and cried "Mummy, don't go to Brisbane!"

I tried to explain as best I could that I had to go, but the more I talked the more she seemed to cry. Finally, after about 10 minutes of her crying, she started to calm down and she told me that she was scared of what would happen if I went away to Brisbane with Nicola.

Aunty Kathy went to hospital with Baby Bubble and he died... Now Mummy is going to Brisbane with Bubby Nikka and she's very sick...

And it was in that part of the story that she became hysterical again and told me she would be very very sad if Nicola died.

Now, through this whole process we have been very very careful to not mention "The 'D' word" in front of the children, not even in passing or in veiled reference. Any discussions we, as adults, have regarding 'negative resolutions to our existing situation' are done late at night, usually in our ensuite bathroom, while children are in bed, or during the day while they are at school.

We thought we had nipped this kind of thought in the bud way back last year when we first got her diagnosis, but apparently I was wrong.

When Jessica had her break down this morning, I couldn't do anything else but cry with her, hold her tight, and then I did the unthinkable... I promised her that Nicola was not going to die.

I honestly don't know what else I could have done, nothing else seemed right.

This is going to be the longest stint I have ever been apart from them, and to be honest, I am utterly terrified of how they are going to handle it. Physically they are fine, and they would be well looked after by their Daddy, even if he can't cook very well at all... but mentally, emotionally, I don't know how they are going to handle things.

They are strong girls, they have had to be with everything they have endured since Nicola's birth, but sometimes it feels like this is going to be too much for them.

Hell, most of the time it feels like it's too much for me and I'm a grown adult who understands relatively complex emotions!

I didn't want to face this trip, but the trip went on and here we are. She is asleep in her makeshift bed and I am sitting in a dark room contemplating over what is going to be coming.

Tomorrow morning she gets admitted at 7am to Day Procedure and then taken over to the Adults hospital, anesthetized and given her first dose of radiation, then we go back to Day Procedure for her to finish waking up then we move over to Banksia for her to restart her chemo. Tomorrow night we will stay on the ward because of the side effects of the chemo, and then, well, I guess we just see how she goes.

"Just wait and see"

Seems to be something of an ongoing mantra for us of late... Just wait and see how the chemo goes... just wait and see how the breathing goes... just wait and see how the nausea goes... just wait and see how the radiation goes... just wait and see how her pain levels go... Just wait and see...

Now we wait and see if this is going to give us hope.

It's going to be a torturously long, emotionally painful and physically wearing wait... for both of us.

Friday, February 3, 2012

Unanswered Prayers

14 weeks ago tonight I sat here and wrote with tears in my eyes as I shared with the world that there was no doubt, my beautiful precious girl had cancer, an announcement that started the roller coaster ride that has become our life.

Since then we have endured one agonizing week of waiting, twelve weeks of intensive chemotherapy and another week of agonizing waiting...

We have hoped hundreds of hopes, prayed thousands of prayers and cried millions of tears...

We have thrown our lives around, watched our other children buffeted by the after shock tsunami's of Nicola's earthquake, and tried to hold on as our feet have been swept out from under us...

All the time we have held fast to the desperate hope that today would bring positive change... today would make it all ok. Today would give us the hope that we needed to keep going through this journey.

To be honest, we've psyched ourselves up a lot. We've watched the way Nicola has handled everything, her superstar performances, the amazement in her doctors every time her bloods came back, her beautiful smile that has managed to shine through almost every single day, and we've assumed that her first restaging was going to bring reassuring wonderful news of an amazing improvement in her cancer.

Well, today has come... and it did not bring us reassurance, it did not bring us comfort, and it did not bring us hope.

The positive is that the cancer has not visibly progressed.

The negative is that there has not been the amazing improvement we had hoped for... in fact, there has been very limited improvement.

The tumor has had limited shrinkage.

The cancer is still prolific through her abdominal region.

The metastasis is still severely impacting on her lungs.

12 weeks of intense chemotherapy and there has been limited change.

To say I am gutted is an understatement.

I feel shocked, I don't want to believe it, I don't want to think it's possible, but I know it is.

So what comes next?

Surgery is absolutely and completely not an option.

Monday we turn our lives inside out and upside down so Nicola and I can fly to Brisbane for her to start 6 weeks of intensive radiation therapy. We have to cross her fingers that her little airways can cope with the stress and pressure of the repeated anesthetics and pray that in 12 weeks we find something to give us a little hope.

I know I should be hopeful, I know I should just believe that everything will be ok and that she will come through this, and God knows, if the power of prayer has anything to do with it she will soldier through without a backward glance...

But I find it hard to cling to something I can't see. I don't like groping blindly in the dark hoping and praying that sooner or later my fingers will just happen to grab hold of a life preserver...

I can see little glimmers, but I'm still desperately waiting for the beacon of hope that is supposed to come.

Who knows, maybe in 12 weeks we will find something... but tonight, the world is just a very cruel, dark and miserable place.

Thursday, February 2, 2012

Until Tomorrow....

14 weeks ago I sat here, at my computer, and I stared for a long time while I tried to work out how to ask for help, how to ask my friends and family to pray for my baby girl as we faced the most difficult path we had ever traveled, a diagnosis of cancer.

Now I find myself in much the same position.

On Tuesday Nicola had an MRI to restage her cancer.

Tomorrow we get the results.

To say that I am scared is an understatement. I am totally, utterly and completely terrified.

I am so afraid that they will tell me that the chemo hasn't worked or that the tumor hasn't responded or that we have no more options.

I know it probably sounds silly to think these thoughts, especially when we have not been officially given the results yet, but there are a few things that I do know.

1. Healthy children with a stage 4 Embryonal Rhabdomyosarcoma have less than a 20% five year survival rate.

2. Even with all treatment options available today, metastasized cancer is rarely curable.

3. Children with Costello Syndrome and childhood cancer are more likely to die than survive.

I feel positively anxious about what is going to be said. I keep going through making lists of what I need to ask the oncologist when I speak to him, but then I get to a point and the questions just all seem to hard, and deep down I don't really want to know the answers at all. I still want this all to just be a bad dream and I'm going to wake up one day soon and it will never have happened and my baby will be ok.

I have spent most of the day walking around in a total funk. We got home last night.

She had her radiation planning yesterday, and when I was sitting in the waiting room waiting for her, I looked around and it occurred to me that everyone else that was there for treatment was old. (It was at the adults hospital)

I can't explain it, but it really just struck me that Nicola didn't deserve to be there. None of them did, no one deserves a diagnosis of cancer, but to see my beautiful, precious little three year old daughter in amongst all the much, much, much older people there for treatment, it just seemed to very very wrong.

But, regardless of how wrong it feels, it is happening, and it is happening at an alarming rate. Having flown home last night, we have until Monday morning to organise everything for us to fly back down to Brisbane again for her to start radiation therapy.

To be honest, I'm not sure which is going to be worse... seeing my baby suffer through 6 weeks of daily anesthetics and radiation therapy, or being away from the rest of my family for so long.

We had briefly contemplated tag teaming so we could take turns at being down there and up here, to break up and make it a bit easier, but the cost of the flights alone are so prohibitive that it makes it impossible for us to even truly consider, especially on top of everything else.

But I guess at the end of the day we do what we have to do, and if that means I have to be away from my beautiful children and my husband for the better part of two months to give Nicola any kind of chance at beating this, then I have to do it, there is absolutely no doubt at all about that.

But, until tomorrow it is all irrelevant. Until tomorrow we don't know for sure what will be happening or what next week will hold, we won't know anything...

All we can to is wait...

Until tomorrow.