Santa Clause Blues

Christmas is a time for loving and giving... it is a celebration of family, of friends, of love... and of togetherness...

But for me, it is also a massive slap in the face. It is a huge reminder that my child is still different... my child is not like the others.

Last year it was hurtful because I was buying my 2 year old presents that were 6+ months.

This year it is just heart wrenching because I am buying my now 3 year old presents that are targeted for ages 6+ months.

Beyond that there is the constant niggling little voice deep in the recesses of my mind that keeps whispering that I need to make this Christmas something special... because, as positive as I try to be, being realistic, I just don't know how many more of these we will have together.

With that in mind we have made the conscious choice that we want Santa photos done this year. It's not something that we have particularly put a lot of time or effort into worrying about previously because the line ups are just horrific and people are awful and Nicola just generally doesn't like the crowds and the noise and everything.

I thought I would go out on a limb and I called center management and I asked them if it would be possible to book a specific time to go in and have photos done. I explained to them that Nicola is only 3 years old and has very complex disabilities and is now battling cancer and to line up for an hour would just cause her immeasurable distress and would make the photo impossible...

Just trying to relate all the issues she has with society in general at the moment was enough to reduce me to tears and my husband had to take over the phone call because I just couldn't say any more.

Thankfully it turns out that the marketing manager has a wonderfully kind heart and they have organised for us to meet them at center management and they will take us straight to the front of the line so that we can get her Santa photo.

So far I have spent three days looking in the shops trying to find something suitable to give to Nicola for a Christmas present. I needed to get three of them. One from Santa, one from Mummy and Daddy, and one from Grandad Bob.

Everything that would have been considered 'suitable' for her level of abilities we either already have or is pretty much the same as what we already have.

Everything in the kids section is too big for her, and even the stuff in the baby section, most of it is just simply not suitable because of her disabilities.

It hurts to see everyone else running around, merrily plucking toys left, right and center from the shelves, laughing and having a jolly old time, and all I want to do is cry at the unfairness of it all... not unfairness because it's hard for me, but unfairness because it's hard for her. She is so limited in what she can do, and so limited in what she can use and what she can have.

To top it off, because of the last round of chemo, Nicola is due to be neutropenic over Christmas and New Year which means that she will be prone to all infections and bugs, her bones and marrow will be hurting and she will generally just be feeling miserable and utterly crap.

It's hard, we have to try and make the most of everything because we have other children that still deserve everything we can give them for Christmas, but with Nicola and the cancer and how miserable and cranky and pained she is all I want to do is to cancel it and tell everyone to go away...

But we can't.

Unfortunately, it seems, Christmas just must go on.

When it rains, it pours.

Today I finally figured out why I have spent this week feeling so overwhelmed with everything.

Even though we are at home, I have been at the hospital every single day this week.

Monday we had to take her in to have some bloods done to monitor her blood counts post chemo.

Tuesday we had to go back for a review because her blood counts were not what they had expected to find - her white cells were too high, her hemoglobin was too low and some of her electrolytes were off. She was sent home because they wanted to take a minimalist approach in regards to intervention, hoping she would self correct.

Wednesday - we had to do a rushed trip at 10pm for an urgent review because she developed severe respiratory distress and started to turn blue.

By the time we got to the hospital she had improved enough for them to send her home as long as we watched her very very closely because being admitted was likely to be more detrimental given that the ward is full of children with nasty bugs.

Thursday we had to go back for a review after her breathing issues. They decided that it was most likely a bit of a viral infection that was affecting her.

Today, Friday, is chemo day in Townsville. We had to go in early for an assessment by the doctors before they could do her chemo. I was late because it took me ages to find a park after some stupid ignorant moron stole the park I had been waiting for, but that is a whole other rant in itself. The doctor was also running late, which made it ok. Then we had to wait for the treatment room to be available and then we had to do bloods etc, and finally she got the chemo done.

At the same time they have diagnosed her with croup, which is what is causing the respiratory problems. Because her lungs are already compromised because of the metastasis in her lungs from the cancer, any little respiratory bug that wouldn't really bother a healthy child all that much is knocking her for six.

So, now, I have a medically fragile child with cancer, who is already respiratory compromised and has underlaying pain management issues, who now has additional pain from bone/marrow pain caused by the chemo, itching caused by the pain medications she is on, and now a red raw throat and respiratory distress caused by croup.

Poor little mite just can't seem to catch a break at the moment!

:(

Only God Can Understand

Only God Can Understand

My dreams for you are born of faith as I watch you struggle to find your way

They paint a canvas of future hope and the vision of a brighter day

My dreams for you cannot be fulfilled by the efforts of human hands

They are not understood in the earthly realm, only God can understand.

My wish for you is to be the best at whatever you choose to be

To show the world your unselfish love and the joy you bring to me

My wish for you cannot be painted with the words we have at our command

It is not a wish that is made with words, but one that only God can understand.

My prayer for you is to see the world as it was created to be from the start

Filled with love and truth to guide your way as you experience it from your heart

My prayer for you cannot be explained by the greatest minds that fill our land

It is only heard by heavenly ears, for only God can understand.

My love for you does not depend on your abilities or strength to achieve

It is from the deepest part of our souls that our hearts can interweave

My love for you cannot be measured by instruments known to man

It is a love so true that we share in our hearts that only God can understand.

My Happy Baby

Today I have seen something that I have not really seen for a long time... I saw my happy baby.

I saw the little girl who smiles cheekily, who dances to Wiggles music, blows kisses to people and plays cheeky games and tricks. I saw the little girl who dissolves into peals of hysterics when her sisters entertain her, the same little girl who waves to strangers... and most importantly, the little girl who says "Mamma" and really wants her mamma.

It turns out that she's been there all along, we just needed to get her pain relief under control, which thanks to an on the ball pain team who aren't afraid to take chances and up the ante, seems to be happening.

The difference in her is nothing short of phenomenal.

She is awake and alert and interactive. She is playing games and communicating. She is laughing and joking.

Today at lunch time I was giving her a bit of chocolate custard after she had her meat and veges and she told me she wanted some in her mouth. I obliged and gave her a few little mouthfuls, but then when I started to put it through her tube again she got agitated and started frantically signing 'more' and pointing to her mouth. As if that wasn't clear enough she was opening her mouth as wide as she could and making 'aaah' sounds.

Even tonight when we were leaving Coles she was smiling and waving to strangers and blowing every one kisses.

She still has moments when she is wracked with pain and so uncomfortable, but now they are coming further and further between. Which is phenomenal, it really is... but it also makes it hard.

It makes it hard to reconcile this bright, happy, sparkling little girl with someone who is going through so much, who is suffering through so much pain and has so much going on inside her little body.

It is starting to become more and more apparent though... her beautiful little blonde curls that took three years to grow in, that I have loved so much as slowly starting to fall out. I have noticed more and more that there are stray strands of beautiful blonde baby curls falling in her wake, and really, it's enough to make me cry.

Soon enough just looking at her will be enough to scream 'I AM A CANCER KID!!'

I guess I should start investing in some funky little hats and bonnets for her! Maybe we will even get her a wig... what do you think??

:D

(P.S. I really wouldn't get her a wig, please don't think I'm quite that daft... it would be too hard to keep it on her head! ;) )

RAOK & Utter Chaos!

So, today was Nicola's second round of major chemo. The day did not get off to a good start from the beginning!

I overslept which means that we were 25 minutes late getting to the hospital, although when we got there, the most unusual thing happened.

We were just getting into the lift to go up to the Oncology Outpatients when a woman I had never met before stopped us and handed us a ticket for the car park. Apparently she had been given a couple of free exit passes to the carpark and she only needed one, so she gave the other one to us.

It was such a surprise, but such a totally welcome surprise! It was nice to have something nice come our way... especially when the rest of the day went so badly downhill!

After getting to outpatients, we saw Dr Peter really quickly, and then we started to wait...

And we waited...

and waited...

and waited...

6 hours after we got there they FINALLY had her chemo ready to administer.

Because one of the drugs causes damage to the kidneys and the bladder, they have to do 8 hours of intensive IV hydration post chemo, so then we had to wait for a bed on the ward...

And we waited...

and waited...

and waited...

By the time we got to the ward I had one very tired, very cranky, very moody little girl who wanted nothing more than her dinner and her pain relief and her bed... so I got her into bed, I fed her, I settled her down, and then I went to ask for her pain relief... which is when things went from bad to utterly insane!!!

When the resident came around to do the medication chart for Nicola's admission, I told her that the easiest way would be to just copy from the last one. We were only discharged 6 days ago and nothing had changed except the morphine dose which had gone from 7mg twice daily to 8mg twice daily.

Sounds easy right?

Just copy from one piece of paper to another?

Well, you would think so! But apparently someone with a Bachelors Degree in Medicine can't comprehend the simplicity of such a task!

When I asked for Nicola's oxycodone we discovered that instead of being prescribed 2mg every 3 hours as required, she had been prescribed 10 (TEN)mg every three hours!

This is a hard core heavily controlled narcotic drug that has some insane side effects for overdose, including heart attack and respiratory shock... and this doctor bungled her dose?!?!

Out of every medication on her chart, there was ONE that was correct. ONE. Out of well over a dozen!!

To say that I was furious is an understatement. I am trying to work out how the hell such a monumental screw up could happen... and what scares me even more is that if it wasn't for the fact that we picked it up, there is no guarantee that anyone else would have! I mean, sure, you would think that a nurse would question such an extreme dose for such a high child, but mistakes do happen... we see it in the media all the time!

The whole thing just left me so totally, completely and utterly livid at the whole thing!

Complaints have now been filed and the charts have been rewritten correctly... but still...

:@

Our Last Down Day...

And tomorrow the fun begins!

Tomorrow is Nicola's second big round of chemo and hopefully we get to head 'home home' a few days later, so today was our last big huzzah as a family, enjoying some down time on our big adventure.

We packed the girls up and went over to Southbank and took them on the 'fairies wheel'. (OMG! $45 just to get on?!?!) They loved it! They all did, even Nicola!

We went to grab some lunch, which ended up being fraught with tears after one of the stinky ibis birds stole Jessica's fish right out of her hands!

Nicola enjoying a piece of pizza she stole from Isabella.

But in the end we enjoyed a meal out and then took them to Southbank to have a paddle in the pretend beach.

To start with I wasn't going to put Nicola in the water, we were just sitting up on the side watching as the big girls ran crazy and splashed in the water, but then I decided to stand Nicola up and see how she went with her feet squishing in the sand. But within about five second she was reaching down trying to get to the water to splash, so I sat her down and let her have a bit of a play.

She absolutely loved it! I have never seen her react in such a way to being in the water. Normally if you put her in the bath she freaks out and cries until you take her out, but today she was splashing and playing and really loving every second of it!

They all did!

Blowing kisses for the camera!

Heartbreak. :(

Today the most horrible thing happened...

We have been having an ongoing fight with the hospital over finding Nicola a surgery spot to have her port revised. The problem we have is that if they can't get her a place this week, then we are going to find ourselves stuck down here for another three weeks.

Which is just going to cause so many problems! We need to find somewhere else to stay because we can't stay here indefinitely, we are on very limited finances because this is all so very very expensive...

So when they told me this afternoon that the earliest theater slot they could get her was next Wednesday, I broke down and started crying, mainly from frustration and stress.

At which point my beautiful little four year old Isabella came out, hugged me, and said "Mummy, if Nicola dies, I am going to be very sad."

Honestly, you could have knocked me over with a light breeze. My heart just stopped. We have tried so hard to shield them from the reality of Nicola's diagnosis, and have made it very clear that no one is to even hint at the fact that Nicola might die, because I didn't want them to deal with that level of stress.

Apparently I didn't try hard enough.

I asked her where she got that idea from, and she told me Jessica told her. Where Jessica got it from, I have no idea, she won't tell me... but for some unknown amount of time she has been harbouring this fear that her baby sister is going to die, and she has been trying to protect me by not telling me about it.

Well that set me off all over again... between tears I was trying to explain to them how Nicola is very sick and how the tumor in her tummy that we have talked about is making her very very sick, but the doctors are giving her special medicine called chemo to try and make her better.

I am so out of my league here... I honestly don't know what to do. My first instinct is to shield them, to lie to them and promise them that everything will be OK and that Nicola will be just fine, but what if it isn't?

Being realistic, statistics are not on our side. They are stacked so highly against her that some hours it seems utterly insurmountable... yet how can I put that kind of stress, that kind of fear and heartache on two little girls who are still little more than babies themselves?

I spoke to our social worker back home who has said she will look into some counselling options for them, but until then, we just have to wait it out...

But at least now I understand their odd behaviour and their tempers and mood swings!

:'(