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.


marlise said...

Ai, Lea :-( That breaks my heart. ((hugs))

Natacha said...

I don't really have words for you Lea. It is always easy for an outsider to look into your world, and try to comprehend what you are dealing with, but we will never understand.

This is the first time that I am reading your blog, and I am in tears.

I don't know how you do it, but I am sure you are not doing it alone. I am sure He is holding you, and carrying you at times that you are not sure how to deal with a new challenge.


Anonymous said...

I am so sorry Lea. (And Bianca and all the other kids and parents going through this.) I certainly do not find anything funny about your pain either. I am actually in tears, I can't imagine going through something like this with my own little girl.

Anonymous said...

This post made me cry.

I don't unerstand how people can be so awful! Obviously they have never experienced anything like this. I think it would be a wake up call to them.
I am ashamed to admit what a cruel world we live in.

Many prayers being sent out for Bianca!

Anonymous said...

Thank you, Lea.

Michelle said...

Whoop Whoop, you write so well.... Fantastic response. Lots of Love from us in the UK. I will of course be leaving a coment on the ABC link that you have included. XXXX

The Townsend Family said...

Wow. I was just sickened to see such disgusting taste in that video. I want you to know, that I agree... IT WAS NOT FUNNY. And sweet little Bianca... what a precious girl who has been such a warrior princess against such a horrible disease. I enjoy reading your post about your sweet family. What pride they must feel to have you as their mom.

Anonymous said...

Hear Hear Lea, as you say they should walk in our shoes for just one day and maybe then could see it is not so funny.

Colleen said...

Not funny at all Lea :(

Anonymous said...

Ek het nie woorde nie, maar ek weet presies hoe jy voel.

I don't think one can ever really understand unless you've been on the receiving end of childhood disease.

And then being mocked... I have no words to describe the disgust I am feeling.


Anonymous said...

Lea I couldn't bear to watch the video but I hope that all of the people involved in making and distributing that video read your post and feel thoroughly ashamed of themselves.

There is nothing at all funny about Bianca's journey, nor Kyah's (whom I found through your blog).

I hope Bianca is feeling a bit better now, enjoy the holidays!

Anonymous said...

Hi Lea,
I watched this a few weeks ago and what you have expressed is exactly right. It is NOT funny.

Anonymous said...

Lea - I fully agree with you about the video (I have not watched it, I don't want to.) I'm pleased to see that they have acknowledged their mistake & have apologised. I wish they could see all the photos that you have published with this post.

I was brought to tears (and I'm at work... ) by all the photos of Bianca; seeing her crying and the one of her splotchy just broke my heart & I am pretty sure it would tug even at their hearts.

Be proud of what you have done for your child, Lea. You and Terence have done a marvelous job. Without your love and support I wonder if Bianca would be as healthy as she is today.

superrelish said...

What a beautifully written response to a disgusting video. You are a brave and wonderful family with beautiful daughters.

Anonymous said...

Wow, what a powerful piece of writing. It sure brought me to tears.
You are right, it's not funny. Although looking back on some of our journey I can laugh at bits of it now; the car-drenching vomits, and the running to muffin break when Pete has a general anaesthetic. But other bits I will never be able to laugh at. Pete's big seizure, and that look in his eyes when I let him down and let the medical people hurt him. That stuff is almost unbearable.
Thanks for sharing all those photos Lea. Cancer stinks!

Chantal Roos said...

Ai Lea, this made me cry. You have such a brave little girl and she is beautiful!

puppygirl said...

How incredibly disgusting - I don't see how anyone could think it was funny!

Chatabox Girl said...

That is terrible, and not at all funny!

I dont really know what to say. I am speechless! your daughter is a very strong and brave girl. Though you dont need me to say that as you already know it.

Some Australians are good, but a large amount are like the ones you linked to. Idiots who should NOT be allowed near another human being.

Anonymous said...

I'm utterly disgusted! I don't believe for one second that a person needs to walk a mile in your shoes to be able to show compassion for a child. These people are disgusting. Its not funny in anyway and the fact that somebody would even attempt to make it funny really makes me ashamed of the human race.
This is a truly inspirational quote, it has once again reminded me of what a brave and incredible child you have. Bianca is going to do something truly amazing with her life, I can just feel it, how could she not? After the start she's had, I have no doubt she's going to be one little fighter!


Anonymous said...

I'm so sorry you had to go through all of that.

Anonymous said...

That is devastatingly sad. It makes you wonder why some people still act like Australians are decent people. They aren't. Even wiping them from the face of the Earth wouldn't right this wrong.

Anonymous said...

You will be pleased to know that the Chasers are now off the air permanently. Australia plainly did not find them 'funny' either.

morgan said...

This brought tears to my eyes. I hope and pray everything goes well, I could never imagine going through what you are going through,its not funny to see any child go through cancer , Bianca is strong as well are you.

morgan said...

This brought tears to my eyes. I hope and pray everything goes well, I could never imagine going through what you are going through,its not funny to see any child go through cancer , Bianca is strong as well are you.