Dear Dietitian

Dear Dietitian,

First of all, I would like to tell you that you are gutless! You are a gutless coward! If you have a problem with the way I am feeding my child, come and talk to me yourself!

Oh, that's right, you did! I told you that I would NOT put her on formula... you told me that I was neglecting her health. I asked you if you drank formula for every meal seeing as how it was so healthy, you huffed and walked away.

Nicola's oncology consultant AGREED with me! He agreed that formula was not suitable for Nicola because of the impact on her bowels. Instead of leaving it at that, you went behind our backs to the fill in doctor while Nicola's doctor was away and had a bitch and whinge because in YOUR opinion Nicola is not getting her nutritional requirements.

Based on what?? Based on the fact that last weekend Nicola received very little solid food and then over the weekend Nicola's meals were returned to the kitchen uneaten.

Well, Dear Dietician, how about you find out the facts before you start throwing around accusations? Last week, on Monday Nicola was fasted until 3pm before we found out she wasn't going to theatre. On Tuesday she was fasted until she actually went to theatre. She had a major operation on her gut which then caused her gut to shut down in response. She was then put in clear fluids only until Friday evening when the surgeons finally decided that they could hear enough bowel sounds to have her eating again.

Saturday, the meals that came from the kitchen were minced, not pureed. Minced foods CANNOT go through her PEG. I fed her from my own personal supply of foods and sent the meals back to the kitchen.

Sunday, the meals that came from the kitchen were minced, not pureed. Minced foods CANNOT go through her PEG. Again, I fed her from my own personal supply of foods and sent the meals back to the kitchen.

On both days she has consumed healthy foods, fruits, meats, vegetables, yoghurts and custards. On both days she has been given apple juice and water and milk.

On neither day was she given unhealthy or insubstantial foods!

I will NOT put her on formula because you are completely and utterly incapable of thinking outside the box. I will NOT put her on formula because YOU think I am doing the wrong thing, and I will NOT put her on formula because it's easier for YOU.

And finally, do you realise how completely and utterly STUPID you sound when you stand there and tell me that real food is not nutritional enough? Really? If meats, fruits, veges, grains, dairy etc are not nutritional then the world at large is in very, very, very big trouble!

I suggest you go home, enjoy your formula and leave us the hell alone to enjoy our nice foods because I will not be listening to anything you have to say in the future.

Regards,

One very very angry (and just a tad emotional) Mummy.

Another Day!

I think today officially classes as our first bad day!

It's not just been one thing, but a whole array of little things that have just driven me to tears.

Start with the fact that I woke up around 2am having nightmares. It is amazing how many of your deepest darkest fears can creep into your dreams as soon as you relax. Naturally, after that happened I found it incredibly difficult to sleep and spent the rest of the time watching daylight sneaking in around the curtains.

With morning came one disaster after another.

First her catheter stopped draining. Oncologists were called in to make a determination as to whether they would just remove it or whether she was still close enough post chemo that they would have to insert another one.

They decided to leave it out, thankfully!

Then we discovered that she was oozing blood from around her button, and the surgeons were called in to assess it. It was then turned back to the oncologists as a likely ulceration of her stomach lining caused by the chemo.

Give her more medication and wait it out.

After lots of fussing and trouble they finally managed to get bloods to do a blood count, only to find out that her hemoglobin levels had completely tanked and she needed a packed cell transfusion.

(huge, huge, MASSIVE thanks to all of you that donate blood!)

Now we have another problem... she has one port, currently in use for pain relief (morphine and ketamine) and saline. Narcotic drugs are incompatible with blood products. They can't stop the pain relief because her pain has escalated significantly in the last 24 hours.

Solution?

Insert another peripheral line.

Into the treatment room we go, much to Nicola's absolute disgust! Four attempts later they finally managed to get a line in that worked to both bleed back and flush. Back to the room and they set up her transfusion.

She has been trying to take a nap since 10am this morning only the other family we are room sharing with are loud, noisy, obnoxious and completely inconsiderate! Every time we finally get her settled they start shouting and yelling and carrying on... or, in the odd instance the rest of the family happens to disappear, the mother will run off and hide downstairs to have a dozen smokes (uh, hello?! your child has CANCER and you're smoking?!?!), and leaving her child in the bed crying anxiously for her to return!

They have increased the dose of lasix they are pushing through to try and get her to drop the 3kg of fluid she has retained in the last week, so she is weeing out a small river, to the point that we are just about changing the sheets with every nappy and nappies are getting changed every 30 minutes or so...

She is still having massive problems with her bowels post surgery, and today has seen a pronounced increase in her pain issues. They think that perhaps the chemo is causing the primary tumor in her pelvis to become inflamed and swollen before it starts to die off.

The final insult to a very long line of injuries?

Someone stole our stuff from the fridge in the parents lounge. They stole my coke, but more importantly, they stole Nicola's apple juice and chocolate custard.

After promising her through the entire peripheral line insertion I promised her that as soon as we got back to her room I would give her a chocolate custard, and then I had to break that promise because some lowlife scum took food from a sick child!!!

Yes, I am just a little bit angry about that!!

So all in all, it has just been a completely and utterly crap day.

The only thing I hope is that tomorrow, being a fully staffed Monday, will bring a better day!

I miss my beautiful baby girl's cheeky smile!!!

:'(

It's All Purple.

I guess first things first, I should be apologizing for not getting this post out last night. For anyone that is friends with me on Facebook I had alluded to answers yesterday, and made promises of a blog post that would be published last night...

All I can say is that something else came along.

Something along the vein of a very good friend, some very good Thai take away, and some very good alcohol.

So, anyway... back to the story at hand.

Yesterday we got some answers.

We still don't have full answers, but we at least know some basics.

It is definitely, absolutely, 110% certainly cancer. It is from the rhabdomyosarcoma family, which we expected. They are fairly certain that it is an embryonal but they won't know that for sure until the tests come back, which should be early next week.

The answers were enough for them to be able to start chemotherapy yesterday.

I really have to say, after all the build up and intense emotions in the lead up, actually starting chemo was somewhat anti-climactic!

The first treatment was over within a matter of minutes. It was a simple injection through her porta cath.

So that is where we are.

We have just started week 0 of a 42 week chemotherapy treatment regime.

So now, it's all purple. All her lines are stickered purple for cytotoxic waste. Her nappies and waste all go into purple bags for cytotoxic waste. The first 10 days after each chemo treatment she is cytotoxic. From day 8 to day 15 she needs to be wrapped in a bubble and protected from the world as her platelets, bloods and white cells crash spectacularly, and then we get a few days of grace and freedom before we start the whole process again.

Through all of yesterday, through talking to the surgeons and discovering the extent of the cancer spread in her abdomen, having a brutally frank discussion with the oncologists about her chances, even through her first round of chemo being administered I held it together. Then the ward receptionist brought me in Nicola's bravery beads, and I fell apart. A few cheap stupid plastic beads and I totally lose it.

So that's where we are. We have some answers, but we're still just really holding. We spend one day a week doing chemo and the other 6 days a week trying to find the strength to keep hoping and praying that she will get through this.

We are hoping that at some point we may be able to start sneaking home to north Queensland between major treatments, so that means that out of every three weeks, I will only have to spend 3 days out of town and away from my family.

At least that will give us some basic comforts, like food that doesn't come from a box or gets zapped in a microwave... like beds that don't feel like you're sleeping on a plastic sack of broken concrete... and most importantly, the comfort of home, of safety, of security, of family, and of our familiar environment.

Until then, we maintain status quo. We pass each day hour by hour, just watching and waiting.

Waiting...

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.

Preliminary Results.

Nicola had her MRI today. The Oncologists in Brisbane ordered a CT scan of her chest as well while she was under the general anaesthetic.

The results were available very very quickly.

There is very little doubt that it is cancer. The only thing now is that they are unsure of the exact type of cancer. The primary (extremely large) mass in her pelvis is either stemming from, or impacting on, one of the main support muscles next to her spine. Because it could be stemming from muscle they believe it could be a rhabdomyosarcoma, but, because the mass is also located on the left side of the body and impeding her bladder and her bladder function, they believe there is also a possibility of it being a neuroblastoma.

The CT scan showed that in addition to the vascular tissue around her gall bladder and inferior to her liver, she also has clusters of 'sub tumours' in her lungs.

We have flights booked to leave for Brisbane first thing in the morning. The only reason she is not on a plane tonight is because it is too soon after her anaesthetic this afternoon for her to fly.

The team of oncologists are waiting, having reviewed the scans and images, and once we arrive they will talk about a battle plan.

Our one saving grace at the moment, touch wood, seems to be that the primary mass does not seem to be impeded by any major arteries or veins or anything, so it should be largely operable... but again, we won't know any more until we talk to the experts tomorrow.

I have pretty much stopped answering my phone, I can't talk to people at the moment, I am barely able to talk to family and friends. I have seen such an outpouring of love for Nicola in the last 24 hours, it has made me realise how truly lucky we are to have people to support us, to love us and pray for us while we go through this.

To say we are gutted is an understatement. Today I saw my husband cry. Not just a single tear, but great wracking sobs of a man who's heart was breaking. I have never seen that before. I have never seen him display so much raw emotion.

Everything at the moment feels so unbelievably scary. I keep trying to tell myself that this is just another bump in what is going to be the very very long road of Nicola's life, but then little thoughts creep in. Niggling little thoughts that worm their way into my mind, and then I start to cry all over again.

This is my baby.

How are we going to get through this one?

Pray, Hope, Love.

For the last two and a half years, give or take, I have looked back on the day I was given Nicola's diagnosis, and I have often felt like it was about the worst day of my life. My love for my child was never challenged, if anything, it strengthened about a hundred fold in the space of a few words, but with that love came the intense fear.

Fear for my child's future, fear for her well being, for her health, for her safety... fear for her life.

Over the last two years, that fear has slowly subsided and been replaced with a determination that we would not be beaten. We have faced insurmountable battles and we have triumphed, we have challenged the odds and won. Each new victory bought with it a stronger sense of unbeatableness.

Today, I find that feeling of insurmountable unbeatability has not only wavered, but it has been shaken to it's very roots.

Today I was told that my daughter most likely has cancer.

Over the past couple of months she has become more and more irritable and miserable. Over the last two weeks in particular she has started showing signs of bloating and abdominal distention. We saw her paediatrician last Thursday who did some urgent x-rays, suspecting that she had a blockage or impaction in her bowel.

The x-rays showed that there was nothing clearly wrong, so the Doctor ordered an abdominal ultrasound to have a closer look.

The ultrasound today that revealed a rather large mass in her pelvis. The ultrasound report says;

"10.5cm x 9.0cm x 11.0cm solid mass in the pelvis displaying internal vascularity."

They also noted that there is a 2cm solid mass inferior edge of the left lobe of the liver, most likely representative of a node, and solid vascularity material surrounding the gall bladder extending inferior to the liver.

We are scheduled for an MRI tomorrow to find more information but they have told me that she will require surgery regardless because the mass is obstructing the flow of urine into her bladder and her kidneys are moderately obstructed.

We have been told that because of Nicola's over all condition we have been told to assume cancer until they can prove otherwise, which probably won't be until we get to Brisbane and see oncologists for the surgery, and we're not sure when that will be happening, though we believe they are pushing for it to be pretty quick.

All of a sudden I don't feel confident, I don't feel unbeatable, and I certainly don't feel determined or triumphant.

I feel lost, alone and empty. I feel cold and numb.

My baby, my beautiful, sweet, innocent baby, who has already battled through so much, has a monster growing inside her, a horrible, sinister, deadly monster.

I can't fight it. I can't make it go away.

The journey ahead is so intense, and that is just finding out what we are dealing with. At the moment I can't even begin to comprehend dealing with chemo and radiation and all of that.

It all just feels so completely overwhelming, and I can't process it.

All I want is to go to bed, curl up and sleep and wake up with today having never happened.

Instead I will smile and pretend. I will pretend to be strong, I will pretend to be brave. I will pretend that everything is going to be just fine, even though deep down inside my heart is breaking.

I will hide my fears and I will not cry, I will show strength and courage even though I want to run and hide, and beyond all, I will pray, I will hope, and I will love fiercely.

Because other than pray, hope and love, I don't know what else I can do.

A Day in the Life of...

A lot of people tell me repeatedly that they can't even begin to imagine what my life would be like...

So after a particularly particular day, I have decided that I would share a few tidbits of my day.

After waking about every hour last night, Nicola decided that a great time to start the day was 5.14am. She wanted up, she wanted out of bed, she wanted a clean nappy, she wanted her medicine and she wanted her milk and she wanted them all in that exact order.

Then she wanted breakfast. We had tried to do some quality family time this morning and we had decided to have barbecued bacon, eggs and potato gems for breakfast. Jessica and Isabella rang Grandma and Grandad and invited them (while I was in the shower, without asking me!) so it turned into a real family affair...

Except Nicola didn't want to be part of it. It was too hot, to bright and just not what she wanted.

So she screamed, so while the rest of the family sat outside, Michael sat inside with Nicola while I cooked and then I sat inside with Nicola while everyone else ate.

We decided to take the girls to the duckponds to have a bit of down time. I normally love the duckponds, it's so relaxing and so inviting! There is usually some shade and a lovely breeze and the big girls have a great time throwing bread (that we buy specially because the ducks like soft bread too!) to the ducks, turtles and fish.

Except Nicola didn't like it. It was too hot, too bright, too noisy and just not what she wanted. So she screamed. The more she screamed the more Alyssa screamed until the ducks all got scared away. So we gave up, packed up and came home, where, despite her protestations that she was tired and wanted to go to bed, she outright refused to sleep.

I turned the blender on to blend her foods, and she screamed.

I turned the tv on for her to watch Wiggles and she screamed.

I put her on the floor with some toys for a play and she screamed.

I put the iPad on for her to play with and she screamed.

I went to the loo and she screamed.

I talked to her sisters and she screamed.

I had so many things I was planning to do today, including mow my yard so my children can play without risking being attacked by a tribe of mysterious pygmy's, and mopping my floor and doing my dishes and trying to tackle the ever rising mountain of washing, but nothing got done.

Why?

Because Nicola screamed.

My day ended with my 5 year old sitting outside on the swing crying because I broke a promise to her.

I promised her that this afternoon we would play soccer together in the yard, but I couldn't, because Nicola screamed.

This has been what a large part of our life is like. She suffers from a mix of chronic idiopathic pain and extreme anxiety, as well as frustration at not being able to express herself and not being able to get involved etc.

I do what I can, but I can't do enough and so she screams. She screams all day, she wakes through the night. We don't sleep, we don't relax, we don't get time off, we don't get a break.

This is what our life is like. It is relentless, but it is done with love.