Exploring the creative side of me

For a number of months now I have been thinking about things I could do once treatment ends.

One of the things I would like to do is to make some sort of photo collage kind of (dare I say art work? I'm not much of an artist though) creation that we could hang on the wall.

Yes it is easy to say "let's just get the experience behind us, forget that it was ever part of us, get back our lives", but the truth is that we will never again have the life we had before, the normal we knew before Bianca became sick. The day she was diagnosed, our lives changed forever. This journey became part of us, it shaped us in a way and I guess will determine the way forward. I don't think we will ever be able to just put it behind us and forget about it. Bianca will need checkups until she is an adult, there will always be the lookout for signs and symptoms, the worry that it may come back. Fair enough the checkups will become less frequent as we go forward, I guess we will become more at ease over time, but it will always be part of us.

And this is part of her memories, she doesn't remember a different life, this is her story, her life the past 2 years. I could never deny that it happened. She may very well have questions when she becomes older and so I will always acknowledge that it was part of us. I want to always acknowledge how incredibly brave Bianca was and is, what an amazing little girl she was and is, the inspiration she has been to us. So I want to make something we can hang on the wall. Something that will show snippets of the treatments and procedures, but then highlight the more normal things she did like going to school, playing at the park and so on, her beautiful smile. I guess that she was able to live life despite dealing with cancer. I want to incorporate the concept of her beads (not her original set though) and the total number of days we walked this journey until treatment ends.

So I have all these ideas swimming in my mind and with end of treatment date just around the corner (tomorrow exactly 62 days or if you prefer 2 months or if you rather prefer 9 weeks away - so whichever way you look at it, not that long from now). And I will start sifting through the hundreds (maybe more) photos we took since Bianca was diagnosed and start playing around to see what I could do and what might work. So if you have cool ideas, please do share.

And then I will also start to think about what we can actually do to mark the end of treatment. Some people have parties that they share with others to celebrate the end of treatment, others prefer something quieter, and others don't want to do anything at all. I do think we will want to do something, but not quite sure what yet. So lots to think about and I'm hoping for an "ah-ha kind of moment". But it is cool that we are at the point where we can dream and think about these things, to have that end of treatment date well within sight. It seems almost unreal.

All well, but fingers crossed

Things here are going well. Bianca's counts are good, she is back to 100% dose chemo and she is overall really happy. We are on Day 3 of steroids for the month and so far Bianca's only pretty much been hungry - like in asking for food every 5 minutes pretty much.

We had a brief grumpy moment yesterday and I looked at Bianca and told her if she wants to be grumpy then she is one of the seven dwarfs in Snow White and she better grow a beard. Thankfully she wasn't grumpy for long (I just hope I'm not going to jinx myself with this because we still have 2 days of steroids left for this month).

So fingers crossed and hope for the best.

End of the school term

Today was the last day of the school term for Bianca and we now have a 2 week break ahead of us. Of course once again our first actual day of the school holidays will be spent at the hospital for monthly hospital treatment.

Every term at Bianca's school they have a certain theme or topic that they cover. This past term was bees and how honey is made and so on. Today Bianca told me their topic for next term will be all about the body. So I asked Bianca what she knew about a body and she said "that it gets cancer".

I'm so happy Bianca was able to make the last two days of the school term. We don't like keeping her out of school. Of course whenever you ask her what she did during the day we usually get "I forgot". But we do know that she loves going and loves having a lot of friends, I'm so happy she is able to go to school!

The other side of the coin

Big sigh of relief. Bianca is definitely getting over this bug. She's much more interested in things in general (she even played a game of chess with Terence tonight) and she definitely has an appetite again. Well, fussy as always, but at least very much interested in eating again. Now we must just make sure that the runny tummies are all gone and then she can go back to school (the 2 days that are left of this term). One of Terence's colleagues mentioned that you can tell whether a child is well or not by how cheeky a child is and based on that, I'd have to say that Bianca is definitely on the mend, she has regained her sense of humour and witty sayings that she amuses us with every day. (So by the way, Caitlyn's latest saying is "it's delicious!").

So at this point all is good on this side.

Last night I wrote about the more difficult side of this journey, the side that is most definitely not funny and will never be funny. Funny and child cancer - they don't belong in the same sentence. Just as easy and child cancer don't belong in the same sentence. But certainly we have found a way to make it more manageable. I remember when I sat there that first week, totally numb, shocked, heartbroken - I remember thinking that I didn't want to look back and only remember feeling sad. And so we made the decision that whatever this journey threw at us, we would find things somewhere along the line that was more positive. Caitlyn was good that way. We had to focus on her things as well. It certainly took the focus away from the cancer from time to time.

We try very hard to keep things as normal as possible for Bianca. When she couldn't go anywhere, we tried to make things fun at home, things like letting her bake things for the fairies and then they come in the night and leave special surprises:

Or planting a popcorn tree (who knew if you planted unpopped popcorn seeds that it grows into a popcorn tree where you can pick your own popcorn):


She did ballet for a little while:


She likes to dress up:


Play at the beach:


Or the park:

And just like any other kid, ride her bike:


And most of all, she loves to go to school:


We found it is possible to live life despite having cancer. But in saying that, it wouldn't have been possible if it wasn't for some people that we met along the way. Sure there are some really twisted and horrible individuals out there, but there are many many really good people too. We've only ever once had a little boy commented that Bianca had no hair to which she replied "it is growing back" and she turned around and walked away. But other than that, everybody else we came across has always treated us as normal. They never pointed (that we were aware of), they didn't say anything nasty in front of us, whether at school or at ballet (for that little while) everybody just treats Bianca like one of the other kids. She has a lot of friends and the kids don't make fun of her, they accept her. And so as a result this journey has become easier and more manageable. So I want to say thank you to all of you. You will never know how much of a difference that makes to us!

I honestly did not think it was funny

Today somebody sent us a link to an Australian newspaper article and I also found the video clip that it relates to. I was shocked to see how some people could make fun of terminally ill children, how they think it can be funny. Okay fair enough, to them this is just a comedy show, and they say things like "...helping kids lower their expectations in the face of death" and "why go to the trouble if they are going to die anyway?" and they think this is funny?

So here is my message to these idiots who had a laugh at our expense:

I struggle to comprehend how you can think this is funny. I'm trying to find anything funny that relates to my little girl, Bianca's cancer treatment the past 2 years and... no, nothing. I can't find anything funny about hearing the devastating diagnosis and standing in the corridor trying my hardest not to cry as tears streamed down my face. It wasn't funny when I woke up that Tuesday morning thinking "oh what a horrible nightmare", just to realise that this was real, it was very very real.

It wasn't funny when she "celebrated" her 4th birthday party in hospital with kids she never met before and asking me why her friends weren't there.

It wasn't funny when she had to get one injection after another into her little legs and we had to hold her and we could see her little heart beating in her chest and she cried and told me "but Mommy it will be sore" and all you could do is to say "I know, but your soldiers need this medicine to get better".

It wasn't funny when Bianca was stuck in hospital for one infection after another totalling 113 days to date.

It isn't funny knowing your child gets chemo that can help fight their cancer, but that can possibly let them develop another cancer later on, cause heart problems, growth problems, learning, concentration and memory problems or even take away her ability to one day have kids of her own.

I can't find anything funny about her being on oxygen and the doctors talking about the possibility of ICU.

I can't find anything funny about having to hold her down as they put a nose tube down her nose and watching her fight and scream and finally looking utterly defeated and betrayed, and certainly there was nothing funny about how lousy I felt for being unable to protect her from these people doing these things to her.

I don't find anything funny about when she suffered a severe allergic reaction to one of her chemo drugs that required immediate assistance.

It certainly wasn't funny when she suffered a broncospasm and one moment she was playing, suddenly she started having a coughing fit and the next she becomes unresponsive and needing immediate assistance until she woke up again.

It wasn't funny when she got shingles in her face and as a result was in hospital for around 3 weeks and has had to take anti-viral tablets 4 times a day every day for the past year.

None of that was funny! I most definitely did not laugh during those moments!

We look at her beads, and none of that is funny, although it certainly is a testament to her bravery, it reminds us of the countless bloodtests, all the other tests, procedures, days of chemo and so many other things. But it is also a reminder that she should never have had cancer in the first place.

She is only a child, but she was forced to deal with such an incredibly big, devastating thing. She is dealing with a life-threatening illness when most children are just being kids. We hope for the best and all we can do is to believe that her treatment will be successful, but I can assure you there is nothing funny about the fears we have to deal with every single day of our lives.

Could you (The Chasers) honestly look into my little girl's eyes, laugh at her and say "lower your expectations" and "why go to all the trouble?"

I can assure you that for each and every one of us having to deal with child cancer - this is no laughing matter, it is real, it is scary, it is horrible, and we will most certainly go to all the trouble and more, we will sacrifice our lives for our kids if we could, we would gladly take their place if we could.

Right now I can supply you an incredibly long list of parents who walk this journey that we walk, some who unfortunately and sadly have lost their kids to this horrible disease, some who walked this journey, but had to face the reality of a relapse and are now again walking this journey, but this time so much harder and so much more intense.

But you know what (The Chasers)? My little girl is a much bigger person than you will ever be, despite having to deal with the harsh realities, the fears, the pain, the isolation, the side-effects, despite having to cope with so much more than you will ever have to cope with in your lifetime. She is the most amazing, inspiring little girl I know. She doesn't ever complain, she'll cry when something is sore or scary, but she will recover from that and move on and she always finds a way to make the best of life, to laugh and to smile.

She doesn't make fun of people who are forced to go through a certain situation. She never asks "why me?", she never mourns the life she had before she became sick. Sure she has dreams, she would very much like a puppy or a kitten, but right now she can't have either. She asked today when she'll be able to learn how to skateboard and she had to accept that she needs to wait until she doesn't have the risk of low platelets anymore. There was a time where for around 8 months she couldn't really be around other kids and she sat at the top of the slide wishing she had friends who could come and play with her. She wants to be able to run like other kids, to get to the ball before they do, but she accepts that the drugs affect the way she runs, and that she simply cannot do it as well as others. Yet, that doesn't stop her from participating (even if it means being completely last). She has never made any request that was in any way greedy. Sure, she has dreams and ambitions (like we all do) and we will be eternally grateful that the Make-a-Wish foundation was able to grant her a wish and that regardless of what lies around the corner, that was the day she forgot she was sick.

I don't wish this journey on anybody, not even my worst enemy. Whilst we have found a way to make this manageable, it most definitely is not easy. It is devastating, it is hard, it is challenging, you cannot even begin to imagine. But I hope that if you ever have to fight cancer or have a child with cancer (which I sincerely hope don't ever happen to you or a child of yours), I hope that you will be reminded of your question "why go to all the trouble?" and see how you would feel if you were in our shoes... I bet it won't be so funny then anymore.

Oh the wisdom of a 2 year old (and an update on Bianca)

Caitlyn asked to go and sit on the toilet. We have this soft toilet seat for little kids. She's not toilet trained yet, but sometimes she likes to sit on the toilet. So when I opened the door and took her nappy off she suddenly decided she didn't want to sit on it anymore, so I asked "don't you want to sit on it anymore?" and she said "it's too dandedous (dangerous)", all I could do was to burst out laughing, put a new nappy on and close the door.

Today we had a clinic visit. It wasn't our usual monthly visit, but simply because of Bianca's counts that dropped and the fact that she isn't very well at the moment. At the moment she has a runny tummy (but thankfully only once or maybe twice a day), she has no appetite and will only nibble here and there and no energy, thankfully she is taking fluids so that is good. Yesterday she was pretty miserable and didn't want to do anything. We really miss her smile and giggles when she is like this. So today we briefly met with Bianca's doctor and he isn't too worried about Bianca. He thinks that all this is some seasonal virus Bianca is dealing with and all we can do is to wait it out. He is not worried that she will get dehydrated, so that is a huge relief for us. Bianca's counts are pretty good, so hopefully she'll have a much better ability to fight this bug really soon.

This week is the last week of the school term. I'm hopeful Bianca will make it to school before Friday, but in some way don't think she will be well enough. Bianca's teacher isn't worried as Bianca is ahead with her reading and writing and I know that her maths is right on track. So taking this week off too won't have too much of an impact on Bianca's learning.

I'm a little lost for words, but the words amazing, wow, incredible comes to mind...

Recently, Bethany Kerr from Happy to be called Mommy emailed me letting me know that she made a special surprise for us, and it arrived today. It is the most beautiful, amazing pencil drawing of Bianca and Caitlyn. All I can say is wow! It is so incredibly special and she is really such a talented artist. You should see her other website with some of her work, they are amazing: Bethany Kerr Fine Art.

Terence will be looking to get it framed and I can't wait until we can put it up on the wall.

Here is the photo that I took that Bethany saw on our blog:

And here is Bethany's drawing:

Bethany, it really made our day! When I opened your parcel, Bianca's face totally lit up and Caitlyn proudly pointed, saying "that's me!" Thank you so very much!

Some photos as promised...

I have only just managed to download the photos of Bianca's school production she did. They are not the best quality and unfortunately Terence decided to choose a different seat to the one Bianca's teacher reserved for him because he thought finding a seat in the middle somewhere would give him a better view - oh well... We will be getting a DVD as well as soon as they are ready.

The school production was all about a scarecrow called Tattybogle.

So here are some photos:

Here is the stage, all ready for the production, one of the teachers, Miss Hilton painted the backdrops - she is very talented.

Here is Tattybogle and some corn...

Ooh, I can see some bugs (I think the ladybugs are so cute)... Bianca's friend Saana (the little girl with the hat on the left) was one of the narrators - she had so many words to learn, but she did an excellent job!

And some rabbits nibbling at the corn...

Here is the farmer and his dog checking up on the crops...

Some wind dancers - Terence thinks they were storm winds or autumn winds or something...

And then it was time for spring, here are the spring dancers (I helped sew the flowers on these green capes, aren't you proud of me?)

And last but not least, the foxes. Bianca was one of the foxes (in the middle) and had her own words to say. We are so proud of her!