Friday, June 29, 2012


I would just like to say...

For once...

Just for once...

i wish...

Oh my, oh how I wish...

I wish that my 'reality check' would bounce!

This week has just been overwhelming, emotionally.

Nicola is having a bad week, a really bad week. She has had bad pain, and because her hemoglobin is also really low she has been pale, lethargic and looking slightly blue around the lips.

She is due to have another blood transfusion tomorrow morning and really, it's just another slap in a week that has been utterly shocking.

Last weekend one of our beautiful dogs was attacked and ended up in emergency surgery (I am indebt to my vet for the next million years!) and seeing him going out our front door, not knowing if I was ever going to see him again or not, it brought up a lot of complex emotions about life and death and Nicola that I wasn't quite ready to think about then and there.

Couple that with the fact that today my sister finally got all the photos from the birth of my precious angel nephew Krist who was born with angel wings back in January...

And all in all, really, I have spent a large part of this week questioning the fairness of life and the justification for death.

This week I was so desperate for a moment of just sheer normalcy, I took Nicola to the supermarket. Instead of taking her wheelchair, I took a stroller, just like she was any other baby in the market that day.... and we had a lovely time... until some well meaning stranger stopped to look at the baby, and with a look of shock on her face said "What's wrong with her?"

So much for my moment of normalcy!

All week we have had snow stuff coming in dribs and drabs... and given that we live in the hot and humid tropics, that is about as 'normal' as sardines on a cheesecake.

Then, finally, we finally got our itinerary for our trip away, it all arrived in the post today.

If we had ever wanted to try and pretend that this was just a normal family holiday, our 'travel pack' has made that impossible.

Our itinerary arrived inside a purple zip up Starlight case, inside a purple Starlight backpack, accompanied by flashing Starlight wands, Starlight wrist bands and even a Starlight disposable camera.

Everything was a blatant acknowledgement that this is not just a family holiday, this is something organised by Starlight.

This is because our child has cancer.

We are looking at what we need to pack for this trip... Once upon a time, before I was thrust into the world of special needs, I would have chucked some clothes into a suitcase and we would have been great.

Now, I need to pack 30+ syringes per day... plus a dozen different kinds of medication. Because, unlike my other children, she is unable to eat orally, I need to pack all the supplies to ensure that her nutritional needs are met. I need to pack her blankets, her dolly and her elephant, otherwise bedtime will be a complete disaster.

Then, on top of that, I need to ensure that the airline is prepared to deal with her wheelchair. Because we have a stop over in Brisbane, we have to ensure that her wheelchair is available during our stopover as she cannot be safely carried and she cannot be seated in one of their stock standard adult wheelchairs.

We need to ensure that the appropriate tether straps are aboard the aircraft for her child restraint. As she is over the age of two, CASA requires her to hold her own ticket and occupy her own seat, but as she is unable to sit unaided, she has to be in a child restraint... which is why we have to fly Qantas, no other airline will accept her child restraint.

But then, once we get there, everywhere we go, we are going to be the 'Starlight family'.

And to be honest, I think that is one of the things that I think will bother me the most.

If everywhere we go there is that look in people's eyes, that look that says "I know who you are and I'm sorry" I am going to go utterly crazy!!!

I am struggling enough with putting on a brave face for this trip, with being positive and keeping happy so that my children think I am happy... but the first time someone looks at me with that look, it is all just going to dissolve into a horrible mess!

So right now, tonight, I am wishing that just for once my reality check would bounce.

I am wishing that I could look beyond all the negative connotations and all the hidden innuendo's and just enjoy the fact that this is going to be a brilliant family holiday!

I am wishing that just for now I could really truly enjoy everything on it's most simplistic terms and not get caught up in the details.

But, sadly, details have become my life.

I will sit down and work out how many syringes I need, including a safety buffer, and I will find a way to pack them. I will pack her medications and I will deal with the airlines. I will organise her feeds and I will probably spend our first night down there cooking and pureeing so that she has what she needs for the time we are away.

I will go through this trip with a smile on my face and a camera in my hands, recording every moment for time to come so that one day in the future we can look back and remember the fun, the happiness and the togetherness...

Yet, every step of the way there will be that little voice in my head, whispering to me.

How am I supposed to ignore it?

Tuesday, June 26, 2012

What do YOU think??

I guess this is kind of a different post to what I usually write. Normally I write to clear my head and store my memories for later so I can come back to them. Normally when I write I don't expect a response, I just want to write for myself... but tonight is different.

Tonight I am calling out for opinions and ideas... on what I should do with this dress.

This dress has kind of been dubbed 'the dress of doom' in our home.

The first time Nicola wore this dress was when I got into a heavy disagreement with the local Neurosurgeons. The plan, since the VP shunt was put in when Nicola was 1 year old had been to wait until she had recovered from the surgery, give her 6 - 12 months to stabilise and then block the shunt because they didn't believe she was shunt dependent.

6 months after having the shunt put in we found out it was over draining which caused a massive 1cm thick subdural haematoma (a massive blod clot) that covered the entire left side of her brain. This is what caused the muscle spasticity and wastage on the right side of her body, something she has never recovered from. We dialed the shunt back to basically nothing and the subdural haematoma cleared up.

12 months later when everything was as stable as it was going to get with the shunt in, we broached the subject of having it blocked off, which was the original plan... and the local Neurosurgeon made it clear that he never really entertained that thought, he just told us what we wanted to hear.

Well, I was NOT an impressed Mumma, to say the least!

Fast forward a little bit, to the second time Nicola wore this dress.

It was a straight forward, couldn't possibly have anything go wrong because it's just a quick review, appointment with her cardiologist. We had done the holter and the ECG and I fully expected for everything to be smooth sailing, come back in 6 months, kind of thing.

He told us that the Hypertrophic Cardiomyopathy had gotten slightly worse. The pressure gradients in her pulmonary valve were increasing again. The PFO (hole in her heart) was definitely NOT going to clear up on her own... oh, and to just make it peachy... she was developing an arrhythmia. While none of it was yet severe enough to be concerned about, especially given her shocking response to her last round of heart surgery, it would need to be watched closely.

Slap, slap, slap, and slap.

Finally... and this is the ULTIMATE kicker...

This is the dress that Nicola was wearing the day we found the tumor.

This dress has not been on her since. I will NOT allow Alyssa to wear it. I will not even allow it to go into the baby doll dress up box.

I don't feel that I am able to pass something with such negative karmic connotations on to another person. I cannot give it away. I cannot give it to charity. I don't even feel completely comfortable throwing it in landfill in case someone, somewhere, gets the idea to pick it up, take it home and wash it.

So, I am left with one option.

I need to sacrifice this dress.

I must admit, given the number of negative experiences we have shared with this dress, I cannot help but feel a little shimmer of excitement at the thought of ripping this dress into a thousand pieces, or setting it on fire and screaming "BURN BABY BURN!!!" (while the children are at school of course, because I couldn't possibly get away with doing that in front of my fire conscious 6 year old!)

But, I'm not entirely convinced that either of those things, as satisfying as they may be, would do true justice to the amount of ill will I feel toward this dress and everything it has brought upon my Princess...


I ask you...

What should I do?

What is going to be the best way to sacrifice this dress?

Naturally, it will involve a party! Everything at the moment involves a party... but what should we do with this monstrosity before we celebrate?

Saturday, June 23, 2012

One Of Those Days...

You know those days?

The days where everything just seems all too difficult... Far too real...

The days where everything is just too much, and no matter how hard you try, you just can't understand it, and you don't really want to because... well... because it all just sucks!

Today I am having one of those days.

Today I am having a day where I just want to crawl under a rock and hide from the world, but I can't.

Yesterday we got the phone call that Nicola's 'wish' is being granted.

It took us a long time to actually apply for Nicola's wish. We had always known that she would be granted a wish because Costello Syndrome is considered a life threatening condition... but as I have said previously, a wish being granted because of genetic lottery is a far cry from a wish being granted because your child has a likely terminal cancer.

By the time we got around to it, we were told that Make A Wish had closed their books and would not be granting further wishes.

A while later, we were contacted by Starlight who advised us that they would grant a wish for Nicola. They were somewhat limited in what they could do, but they could give her something... the question was, what would we wish for for her?

We sat down and we thought about it... we thought about it over many weeks... and finally, we realised that there was very little that we could really 'wish' for for Nicola... so instead, we looked at her bucket list.

Her bucket list is something that we started looking at after the first round of chemo didn't work as well as we had hoped. It was just a list of things that we thought every little girl should be able to enjoy at least once in her life, no matter how short that life may be...

And one of the things that we thought should be on there that we couldn't grant was to be able to 'play in the snow'.

Yesterday they told us her 'wish' was being granted.

At the end of the second week of the school holidays, we are flying to Melbourne for a few days, and we will be doing a day trip to the snow.

Yesterday it was all big and exciting... it was a holiday, some fun to look forward to, a bit of a thrill for all the girls...

Today... well... today it's just all crap.

I woke up about 3am this morning and laying there in the darkness, just staring at the ceiling fan it struck me.

This wish was applied for because Nicola has stage 4 cancer.

It is being granted now, as quickly as possible, because we have been told not to wait.

Don't delay anything that we want to do, do it now and make our memories while we can.

The girls are so excited, they are telling everyone who will listen that they are going to Melbourne! They have even already started to pack...

I can't blame them for being excited. As a family, we have never had a real holiday together, at least, not without hospital admission being involved.

At Easter, for the first time ever, we went away for a long weekend without Nicola going into hospital. We went to Airlie Beach with Camp Quality for Family Camp. We stayed at Club Crocodile, ate in the restaurant for three meals a day, and did some exciting stuff like a cruise out to the most beautiful beach in the world and other little things... and it was great, we all had a lot of fun, but we were also surrounded by constant reminders of why we were there.

Every family there had been touched by cancer. There were children in active treatment, there were children in remission, there were children who were No Evidence of Disease... and there were parents who had lost their precious ones to this disease.

Easter Sunday morning, after we had had breakfast and while we were waiting for the Easter Egg hunt, Jessica came up and asked me when Nicola was going to go to hospital. When I told her that Nicola wasn't going to hospital the confusion on her face was clear.

Every holiday we had ever had involved an admission... until then.

Now, they have a taste for it. They have a taste for fun, they have a taste for adventure, they have a craving for the little bit of normalcy that other children in their classes seems to get that they have missed out on...

Which is why they are so excited about the thought of another holiday, another big adventure, full of family fun and love... and NO HOSPITAL!!! But seeing their exuberance just hurts that little bit more.

It hurts because they have been so deprived of something that is so normal, they are getting so excited about such wonderful adventures... and it hurts that they have been deprived because we have always had to put Nicola's health and her needs first.

Now, when we finally get to do something so simple, and so fun, there is this whole undertone... this horrible knowledge that only I have that we are doing this because of really yucky circumstances.

Yet, all I can do is smile and try to act happy. They want this, and really, they need this. The girls need to do this together, they need to experience these little parts of life, to have fun and to make memories...

Memories that will, hopefully, last them a life time, because sooner or later the day is going to come where all they have left is these memories that they make now.

So all in all, today, seeing their happiness, and knowing what I know, it just makes my heart hurt.

All in all, today has just been one of those days where reality is just all too much.

Monday, June 18, 2012

Good Intentions

You know, I start every day with hundreds of good intentions...

Yet very rarely do these intentions ever seem to actually make it to fruition.

Sunday morning I woke up and I had so many good intentions.

I intended to make a hot cooked breakfast for my children...

They had Nutella on toast - with sprinkles.

I intended to pull out my boxes of fabric and set up my sewing machine...

They're all still in the closet in Alyssa's bedroom.

I intended to sort through the box of barbies in the toy room...

It is still sitting untouched.

I intended to catch up on the washing...

I am still at least three baskets behind and the folding still hasn't left my bedroom.

I intended to mow the yard...

Well... that intention has been unmet for so long that I am pretty sure a tribe of long lost pygmy's have taken up residence!

Fast forward to today.

I intended to unearth the dining table...

It is still buried in random children's stuff.

I intended to mow the yard...

Those pygmy's are still going strong and their grass huts are looking great!

I intended to bake some nice healthy cookies and muffins for the girls for school...

I made a pineapple cheesecake and then called it quits.

I intended to mop the floors while the babies napped...

I curled up on the couch with a hot Milo and Judge Judy.

It seems that every day I wake up with all these great intentions, all these things I want to do, yet I just never seem to find the time to get them done.

There is always something that ends up distracting me.

For instance... today...

I came home from taking Jessica to school and dropping off the goodies for the bake sale... I had to give Alyssa some breakfast.

I opened the pantry and took out the cereal, and I remembered that I needed to pour the coco pops into an airtight container.

I opened the container's cupboard to get a container and I remembered that I had to put lids on all the containers that the girls have raided to use as storage for little toys.

I took all the lids and went into the toy room and pulled out some containers of little toys and found Isabella's left over toast from breakfast which reminded me that I had to feed Alyssa.

Fed Alyssa and took her empty bowl to the kitchen which reminded me I had to unpack the dishwasher. Went into the laundry to unpack the dishwasher and realised that I hadn't yet run the washing machine.

Went to the two bathrooms to gather up dirty laundry and remembered that I found two leaking taps on the weekend and needed to put in a maintenance request.

Phoned maintenance to report two leaking taps which reminded me that I had to phone Centrelink.

Well, that just wasted an hour of my time and accomplished nothing!!!

Got off the phone and it was time to put Alyssa and Nicola into bed for naps... which involved making bottles, giving medications, changing nappies, giving tube feeds, and going through a whole ritual with Nicola that is just phenomenal.

At which point Isabella was quiet eating her sandwich and watching Dora and wasn't having a non stop conversation with me and Michael was sitting down working out medical requirements for Nicola so we can place another order for consumables... so what else was I supposed to do?

I stole 30 minutes of peace and quiet, turned on a really lame tv show and curled up on the couch with a hot Milo.

Then Isabella finished her sandwich.

I intended to sit down with her and read a book or do some colouring or do something else that was dedicated to just her... but she wanted to play with her My Little Pony's and I wanted to do the dishes...

Then Alyssa was awake and needed lunch, so I got her up and took her into my bathroom to change her which reminded me I needed to empty the rubbish bin in my bathroom.

So I grabbed the baby and the rubbish bin, put her in the toy room and took the rubbish outside which reminded me that I needed to refill the dog's water and food...

So I came back inside with the dog bowls, and dropped them in the sink to wash them which reminded me that I still needed to give Alyssa her lunch.

I made her a quick Vegemite sandwich and put her in Nicola's giraffe chair to eat it, which then naturally reminded me that I had to put the rest of her equipment away because I was sick of kicking the walking frame every time I walked past...

So I started putting equipment in Nicola's room, which reminded me that I needed to move the last few boxes of consumables out of there so I didn't keep waking her up when I needed them...
So I grabbed them to take them into the laundry to put them in the laundry with the rest of the consumables... which, naturally, reminded me that I still hadn't put the washing on.

At which point I realised I was about to be late leaving to drive all the way across town to pick Jess up from school. (Have I mentioned yet how much I LOVE her school!?!?!)

Then a quick trip home, hair gets re-brushed, highland dancing clothes on, and then off to a dancing lesson... which, because it is the end of term, I got to sit in and watch and take a few photos.

Then home again, home again, jiggity jig.

Dinner to cook, babies to bath, books to read, teeth to brush, beds to make and then finally, precious Princesses to tuck in and kiss good night...

I got nothing of actual consequence done today, yet I'm utterly exhausted... It is 8pm and I will probably be in bed in the next hour, after I feed dogs, feed cats, feed fish, feed Nicola, medicate Nicola, lock doors, close windows, put the washing on, run the dishwasher, wipe the kitchen benches, tuck four children in, kiss them all goodnight, fold the washing and make my bed, have a shower, brush my teeth and then finally fall into bed, ready to be awake most of the night anyway...

Then as I lay in bed, listening to every little sound in my house, I will reflect on the day, and I can't help but wonder...

But what happened to all my good intentions?!

Sunday, June 17, 2012

For My Beautiful Friend.

So this morning I woke up feeling positive! I had heaps that I wanted to get done today, and given that most of it was baking, I knew I was going to have a wonderful day.

Really? What could be better than baking up a storm of yummy treats with my Princesses? (I mean other than watching them devour copious amounts of healthy vegies cunningly hidden where they can't see them! Bahahaha!)

So while Michael was feeding Nicola and the girls were eating their toast, I decided to jump on quickly and check my email.

I got an email from a very dear old friend, which made my day fantastic for about 30 seconds, until I opened it...

And then it all fell apart.

Her beautiful, precious three year old daughter has been diagnosed with cancer and she emailed me because she needed advice.

In her message, through her words, I could feel her confusion and her hurt. I knew the feelings, I've felt them. I can still clearly remember the feeling of cold numbness with the reality that my child has cancer... but that couldn't be possible... it really couldn't... because things like that don't happen to people like me. We have already dealt with so much and fought through so much and we deserved a break? Didn't we?

My friend is the same. She has already been through so much... she has done the unthinkable and come out the other side. She has had to find strength that didn't seem possible to find... yet she found it and she carried on. She has gotten up every morning and gone through every day... and made a life for her children. Surely after everything that she has been through she should be spared?


And this is what I struggle to understand.

Why is it that people who have already endured so much have to keep on enduring?

Why is it that women who don't want their children, and those who love them so preciously have them taken away?

Where is the line drawn?

What could I possibly tell my friend as she faces one of the most horrible journey's she could possibly ever endure?

What can I tell her to reassure her? To comfort her?

I know from experience that it sent me crazy when everyone apologised to me after Nicola was diagnosed. I didn't want sympathy, I didn't want people to feel sorry for me... I wanted someone to hug me and to tell me it would be ok.

I wanted my friends to hold my hand and walk beside me... even if it was just virtually. I wanted someone to tell me that one way or another, we were going to get through this. We may not keep our sanity intact, we would probably be scarred for life, but we would get through it.

Most of my 'friends' I really wanted to be there instead opted to avoid me. I know... at least two of them have since confessed it to me... because they didn't know what to say. They couldn't handle what had become my reality. Somehow I stopped being myself, and I became the mother of the dying child.

The fact that I was still the same person I was before was irrelevant. They saw a change in me that meant that they were not comfortable with our friendship... in one case, a friendship that had been forged over 15 years, so they walked away.

And I didn't want to do that to my friend, I couldn't.

Instead, I wanted to take away her hurt and her confusion, I wanted to tell her that everything would be alright, I wanted to hold her hand and reassure her that one way or another, she would come through this...

But words failed me.

Instead I promised her that no matter what, no matter when, I would always be there. And I will.

One breath at a time.

My friend's daughter is having more testing early this week to find out how far it has spread and exactly what kind of nasty they are going to be dealing with... so please, spare a moment to offer a prayer for them. I want them to get better news than we did. I am praying hard that it is something that will be easily treated and that her beautiful girl will lead a long and happy life and this will be a mere blip on their radar.

And for my beautiful friend... I know you will find the strength to get through this... you are strong, you are incredible, you are amazing. And we are sending you every ounce of love and hope that we possibly can.

Saturday, June 9, 2012

One simple sign.

One thing I discovered after Nicola was born was that communication was something that most people take fore granted. You don't realise how monumental it is when a child speaks to you. I hear a lot of people complain about the fact that their child talks and never shuts up (God knows, I am guilty of it myself when Isabella gets into full chatterbox mode) but then I look at Nicola... and I realise that I will never hear her talk like that.

I will never hear her say "Mummy I love you!" I will never hear her say "Mummy, I missed you!"

She says the word "Mamma" but "Mamma" is a bit like "Station". (Total pop culture reference there! Kudos if you get it! ;) )

Most of Nicola's communication is done with a combination of signs and sounds. It sounds a bit difficult for people to grasp, and I guess to outsiders it would kind of be a bit like taking someone who only speaks English and sticking them in the middle of a room where everyone else only speaks Mandarin and ask them to join the conversation.

But, she can converse. She can even argue with me, and argue she does... often!

But it has taken us a long time to get to this point where we can hold rudimentary conversations with her. I tried for months to teach her how to sign the word "Mother" and she refused to even try, yet she learned to sign "Chocolate" in about 3 nanoseconds.

Even now, her actual signs are limited. Most of her signs are related to either her immediate needs (food, medicine, sleepy, clean nappy etc) or her Squeaky sister and even then most of them are butchered from the original auslan and makaton signs because of her restricted movements.

Tonight, after months and months of trying, we had a communications breakthrough.

Not just a little one, but a massive, huge, momentous breakthrough that simultaneously filled me with the most incredible feeling of pride and joy and reduced me to a total blubbering mess.

Tonight we only have Nicola at home, my wonderful Mother and Sister have teamed up to take my other three children after we had to cancel our 'Unbirthday Party' at the nth hour because Nicola's bloods completely tanked in her tests yesterday.

We took our time having our shower tonight because I didn't have to rush off to cook dinner or anything else for the others. We got to play and tickle and have fun under the water. We got to sit on the floor in the shower and just enjoy some quality time... then, just like always, we got dressed. First the right sock, then the left, then the nappy, then her pyjama top and then pants. We put her tube on, and we got her a clean snuggle blanket from the cupboard, then I handed her to her Daddy and we had a big cuddle and I smooched the heck out of her! She loves it, we do it every night, and it leaves her in peals of hysteria...

I gave her kisses and I said "Nigh nigh Nicola, Mamma loves you."

Then it happened.

One simple sign.

One little movement.

One insignificant little flick of the hand that to anyone else wouldn't mean a thing...

But to me, it meant something so significant, so very incredibly important...

It meant "Love"

That smile on her face, that glitter in her eyes, the way her little tongue sticks out when she knows she's being cheeky... then that flick of the hand... together it means something that no words could ever accurately portray.

"I love you Mamma. You are my world."

Tuesday, June 5, 2012

A Crazy Catch Up

Ok, I know, this post is so long over due... but honestly, it's just gotten crazy busy here!

There has been so much stuff happening.

First, I know, I owe some results.

We had a long and in depth conversation with the Oncologists last Thursday.

The MRI scans showed that there was no growth in the cancer, which is good, it means that the cancer is being held at bay, at least for now, by the chemo. It also means that her pain is just not being controlled by the copious amounts of drugs that we are already throwing at her.

We have been working closely with the pain team and her drugs have been increased a lot over the last few weeks, and we are inching toward an improvement, but there is still a ways to go.

We have also discovered that she has yet another para-esophageal hernia. For the non medical amongst us... here is a simple version.

She had an operation when she was 12 months old to form a tightened sphincter at the top of her esophagus. This is called a "Fundoplication". This operation nearly killed her. She spent many weeks on life support after the operation with severe complications. When she was 2.5 years old she developed her first para-esophageal hernia. A small part of her stomach was pushed through the fundoplication into her esophagus. She had to have surgery and a redo of the fundoplication to repair the damage. Now, it seems that she has gone and done it again.

So, this is most likely adding to her pain, but it also definitely explains her feeding problems and the fact that she is having problems tolerating meals. So, now, instead of doing three meals a day plus snacks and drinks, we are giving her smaller, higher calorie feeds about every two hours or so to try and compensate for it and to not cause her any additional pain. The hernia is sliding, so it doesn't always affect her feeds, just sometimes... the problem is that we can't tell until she's been fed, so we are instead opting on the side of caution.

Clearly our little princess likes to keep us on our toes!

So yes, although we got some decent answers from the MRI, it also showed there was no reduction in the primary tumor.

We are now basically at the point where there is nothing left for us to do but to 'wait and see'. The recommendation of the oncologists is that we wait out this course of chemo. We are currently in week 27 and we have treatment for 39 weeks, then up to 3 weeks of 'waiting' before we start serial scanning.

Our Oncologist was pretty clear in that anything big we want to do, any plans we are making or anything else we are dreaming about doing with her, we should do it as soon as possible, before we start serial scanning.

Once we finish chemo all bets are off. They have made it pretty clear that we have more than an 80% chance of her relapsing quickly. Once she relapses we need to decide if we want to continue with a second line treatment.

I am not going to go into all the details of that now, we will cross that bridge later... but suffice it to say that between her pre-existing cancer causing genetic condition, the aggressiveness of this cancer and everything else, her odds are not high at all. In the grand scheme of things, when you take everything into account, it's quite possibly down to single figures.

So really we haven't gotten a whole lot of new information, more just a reiteration of what we already knew, and the confirmation that now more than ever we need to make the most of every single precious moment we have.

I posted recently about the Reaching Out With Love fundraising drive that the school my oldest daughter attends was planning to run to help raise funds for Nicola.

The other thing that has happened in the past week was that there was someone who was so very against the fundraising that they felt it necessary to complain to both the Catholic Education Office and the Office of Fair Trading about the fundraising.

Everything was cancelled.

To be honest, when I first found out about it, I felt like it was a very direct attack on my family, like we were not worthy of the help.

It has been something that we have heard a lot since Nicola's birth. She doesn't tick the right boxes so we don't get anything. She doesn't have a condition that people have heard of, so she doesn't need anything. Our circumstances are different to others, so we don't deserve anything.

It was another slap in the never ending series.

The school has since been granted permission from the Catholic Education Office and for a special appeal sanction from the Office of Fair Trading so they can continue the fundraising.

I am incredibly grateful for the time and effort that these people have put into this, into helping my precious daughter, and I am incredibly grateful that they have not been put off by the bitter actions of one person.

Yet again, I have am both blessed and humbled by the community of which I am lucky enough to be part of.

On Sunday we were lucky enough to attend a Family Fun Day hosted by Camp Quality.

Camp Quality is a charity that deals with families of children with cancer. They do some wonderful things, including taking us all away for a 'holiday' over Easter, which the girls loved. But yesterday was just a bit of fun and down time, and a chance for us to meet some new families who are on this journey with us.

I took a few photos of the girls, not up to my usual standards because I was only using my phone, but I wanted to share these two with you.

We have joked several times recently about getting Nicola a little wig to wear, just for fun... clearly purple is the way to go! :D The sparkly silver hat doesn't hurt either! LOL!

And finally... all of my beautiful butterflies...