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!


A day of movies, rest and pedialyte

Thankfully Bianca did not have to be admitted. I have to be honest, I wasn't really in the mood for another hospital stay right now. Last night Bianca had to have some fluids before they could leave and finally they arrived back home at 1am this morning.

Bianca pretty much only wanted to spend the day in bed and so she's been watching some DVDs and sleeping in between. Every so often we are giving her some Pedialyte which we call pink medicine. She doesn't really like it and the one we have is bubblegum flavour, but she vowed she was not going to take the orange flavour which was the only other one available - so bubblegum flavour it is. She didn't want breakfast this morning, but this afternoon asked to have bone chicken from KFC (drumsticks), so far no vomiting again and that is good. Right now I don't really care what she eats as long as she does eat little bits here and there.

Her neutrophils have come up since we last decreased the chemo dose. I still won't send her to school until she is fully recovered from whatever it is her body is fighting at the moment, but at least she does have some ability to start fighting it and that is good. I guess it is a good thing that this coming week is the last week of school before the holidays and so even if she does not make school this week, she will have the holidays ahead of her to recover.

I do hope she recovers quickly so that she will at least be able to enjoy her holiday a little bit (although lying in bed watching movies could be fun too - especially on rainy days like today).

Tomorrow we have our clinic appointment that our doctor set up for us last week, so I guess it will be a fairly busy day for us.

Just in case you wondered...

When Caitlyn woke up this morning, we had the following conversation:

Me: Good morning Caitlyn, did you have a good sleep?
Caitlyn: Yes
Me: Did you have nice dreams?
Caitlyn: I don't deam (dream)

So there you go, 2 year olds apparently don't dream - just in case you wondered.

Both Terence and Bianca are still asleep and when Terence wakes up I will get updates on how it went last night. I know they arrived home around 1am this morning.


Just in case we were bored...

Bianca and Terence are on their way to Starship. It has now been a week since she started feeling unwell. A week where she has had pretty much no appetite and whilst we have managed getting some fluids into her, it is probably not enough. Tonight she ate a little bit, but shortly after vomitted and so we decided that we needed to call the hospital so that they can check her out.

Whilst we are hopeful she would not need to be admitted, we know that they are likely going to admit her for fluids and to try and establish what type of bug we might be dealing with. Oh well, such is life.

I will update again once I have more info.


I can't help wondering...

I don't really know if this is just Murphy's Law enjoying a laugh at my expense or if this is just coincidence. But there is just something about me considering job opportunities...

The end of May 2007, I received a job offer. It was a dream-come-true kind of job for me. It would have included travel, I would have had to do a big office move, it was a contracting position and it would have opened a number of doors for me. So I accepted and Caitlyn started daycare the day after and "wham!" the door slammed shut by the Saturday when Bianca was admitted to hospital. By the Monday we knew she had leukemia and so I had to email my new boss to let them know that I would need to withdraw from the contract as I wasn't able to focus on the job they just offered me. And so I put my career, my studies and everything else on hold to focus on Bianca, her healthcare and the moment - but I'm not complaining. This was our lives and we had to make the best of it that we could.

Then last year, we still had Sanna - our one Au Pair and since Bianca was on maintenance I thought that perhaps the time came for me to find a new opportunity and so I was offered a contract project coordinator position. Once again, an opportunity that would have opened so many doors for me. An opportunity where I would have learned so much (and certainly having a bit of extra money would've come in handy...) And what happened just after I accepted the position? Bianca was admitted to hospital with shingles. So during that time I wasn't able to work full time as Terence and I shared time at the hospital with Bianca (even though the person I supported actually gave me very few things to do and most of the time I struggled to stay busy - but that's not the point). And whilst I coped extremely well with my work load, I think the employer was possibly not too impressed that I wasn't there all the time - oh well! This is our life and we don't always have a lot of control over it. I stayed a couple of months in this position, but then we had to move to Auckland because things were just not right at Wellington anymore (this actually turned out to be one of our best decisions ever, moving to a hospital with sufficient specialists).

And so we arrived in Auckland and I sort of put my job hunting on hold.

Then in March this year, I accepted a month long contract position at one of the companies where I temped a number of years ago and it worked out really well and it was only for the month. Okay there were around 2.5 days where Bianca did not cope well on steroids and Caitlyn had to stay home a few days - but we planned for this and so Terence was available to help out with this (and sort out our move).

And so we arrive at now. Since Bianca started school last year she has been extremely well settled. She copes well with full-time school, she plays tennis, goes to sewing classes, she participated in their cross-country event. We've only ever kept her away from school because of her monthly hospital visits and the odd, random day where she does not cope too well on steroids. But her counts have been stable, the IVIGs and Acyclovir have made the world of difference and generally she was being just a typical child. You would look at her and she doesn't look like a sick child or anything.

So I figured that since she has been so stable, has coped well with school and is only a little less than 3 months away from end of treatment that I would once again try and find a job. And so I started applying for jobs and got loads and loads of "no, thank you!" responses. When I applied for a position last week, I thought my skills matched the job description, but of course part of me thought that this would be just one of those other "no thank you" responses. To my surprise, the agent called on the Friday setting up an appointment for us to meet this past Monday. Wow! I could hardly believe it. An agent was actually willing to meet with me, despite the big gap in my CV. On Saturday Bianca wasn't feeling 100%, she had a bit of a runny tummy and a blood test revealed low white blood cells.

On the Monday, I had my interview with the agent and it went very well, we discussed Bianca's situation that I would need every so often off for Bianca's hospital visits, that she has been well settled at school and copes well with her treatment. Initially on this day we were told Bianca's neutrophils were sitting at 0.37, but her doctor says her ANC (Absolute Neutrophil Count) is sitting at 0.50. We lowered her chemo dose and he arranged for a hospital visit and blood test the following Monday.

Tuesday I had a test to test my computer skills and that afternoon had an interview with the client! Once again, that felt so "wow". I really liked the ladies I met and the job and company sounded perfect for me. I could actually visualise myself doing this job.

Yesterday the agent called and set up a second interview with the client. So last night Terence and I had a long discussion. It was Wednesday evening and Bianca was still not fully recovered. She doesn't have much of an appetite, she seems more tired than usual, she is even complaining of sore legs a bit and as long as her counts are still low, we don't feel comfortable sending her to school or even arrange for an after-school programme. And who knows how long before she is fully recovered? It could be by tomorrow, maybe early next week, but maybe not.

The big worry with this possible job opportunity would be that it includes payroll - so it won't be as if I could just take time off whenever and certainly Terence is flexible to some extend, but he also has commitments at work and when he does not work, he does not get paid. So this morning I had to email the agent and with a heavy heart, I asked her to withdraw me from the process. It would not be fair on the employer. Certainly up to Friday we thought our days of being neutropenic were over. That we were so close to end of treatment and that since Bianca was so well settled that going back to work would be fine, but I was wrong. Leukemia doesn't always play by our rules. Bianca's low counts caught us by surprise. We have been so comfortable for a while now because she copes so well and this just made us realise once again that we can never be sure what lies around the corner. But once again, this is our life and we just have to go with it. We don't always have a lot of control over it (and sometimes we need a few reminders). I once read a book where the doctor told the mom "you can only make the best decisions with the information you have at the time" and so this is what I had to do. I could take a chance and maybe they'll offer me the position, but then, what if Bianca takes too long to recover or get low counts again, it will not be so good to then have to leave the position to focus on Bianca's health again. Then it makes sense to rather pull away now.

Of course I can't help wondering, if I did not look for a job if Bianca would have been fine or if she would have still developed lower counts? This is the third time that I have now tried to find a longer term job where Bianca developed some kind of infection or became neutropenic or something. I just can't help wondering. But I will never know. All I know is that for now my job hunt is over and I am back at focusing only on Bianca's health and perhaps one day again (who knows) I might have another job opportunity again and we might regain some of the "normal" we lost way back in 2007.

But I'm not complaining - we really have a lot to be thankful for.

Oh and before I close this off - Bianca is still not 100%, her counts are likely still on the low side, but despite this, we've decided to let her participate in the production tonight. Terence will take her, she'll participate and then they'll come straight home. So hopefully the risk will be minimal for her. We feel that this will make her happy. She had to miss out so much on things before as a result of being sick, that we really don't want her to miss out on this too. She missed the production last night, but tonight we want her to be part of this. I won't have the chance to go and watch, but they will be selling DVDs afterwards and so I'll get my chance then to see my little star in action! So prayers that all will go well please.


An early start to our day...

Bianca woke up this morning around 5:22 informing us that she vomited sometime during the night as she slept. Ugggh! Just what we needed (not). So we put her in the shower and afterwards I put her into our bed for a bit more sleep. At this point Caitlyn woke up too declaring "I wake up. I go downstairs. I choose Chip 'n Dale". So I went to her, changed her nappy and managed to convince her to go back to bed and thankfully she slept or was at least quiet in her bed until around 6:15 when she loudly protested that "I wake up!".

So unfortunately Bianca is missing yet another day of school and the first day of her school production. The one that they only do every 3 years. She was going to be a fox - one of the speaking parts. Bianca doesn't say much about it, but I know she's a bit disappointed, especially since she knows her words so well and has been looking forward to this for weeks now. Oh well, such is life!

There is still tomorrow night and I'm really hoping that she will be well enough to participate in that one.


Quick update

Bianca stayed at home today. Well, let me tell you if anything, I learned today that I most definitely do not have a calling to become a homeschool mum. Wow, it was so challenging keeping Caitlyn busy and letting Bianca do school-related activities. Yes, most definitely not my cup of tea.

Chatted to Bianca's doctor today and her ANC (absolute neutrophil count) is sitting at 0.51, so that's a bit better than we thought. He reduced her oral chemo and this will definitely help increase her counts and then she will be due for bloods and a check up on Monday again. There is still a chance she can make the play, but we'll keep her home from school. They only do the school production once every 3 years and we really don't want Bianca to miss out. I still remember my very first school production when I was in Year 1. Bianca has been practicing so hard. So lots of positive thoughts and prayers please.

Other than that, went for an interview with an agent today. It seemed to have gone well. I just feel hugely stupid that I became a bit emotional when we discussed Bianca even though I'm not all that sad about it anymore. So tomorrow I have to go and do testing - they always test your computer skills and she indicated that she was interested in discussing my details with the client - so fingers crossed they want to meet me.


The way things can change... unexpectedly

Our Saturday started all good. We planned to visit Kelly Tarlton thanks to CCF who arranged for us to go. So fairly early (it was Saturday remember) we all got up and Bianca wanted her face painted with the face paint she got for her birthday and so both the girls chose to be painted as tigers. Terence did a pretty good job and then for the next 15 minutes or so the kids roared at me and I had to act all scared because "we had a tigers in the house".

And so after we all got dressed, had breakfast and packed a bag, we went to Kelly Tarlton. It is a pretty cool aquarium and also offers an Antarctic encounter. They have a penguin enclosure with real live penguins and that is by far Bianca's favourite part. You get into a little car that takes you around and you can see how they swim or sleep or sit or whatever penguins like to do. We went around twice. Caitlyn of course was being her usual busy self and had a few moments where she felt a bit frustrated at following the rules.

Bianca wasn't feeling 100% and didn't have much of an appetite and so on the way home she did what all tigers do after a busy day:

After a fairly long afternoon nap, Bianca decided that she wanted to paint her dad's face and this is her work of art:

Yes, she did it all by herself. Personally I think this would make a pretty good Facebook profile for Terence...

And what do tigers and clowns like to do in their spare time?

They like to put doll houses together...

Unfortunately Bianca had a number of runny tummies on this day and so in light of the fact that she didn't have much of an appetite, had an unusually long (for her anyway) afternoon nap and despite there being no fevers, we decided to ring the hospital just in case. The Starship ward was full and busy and so they asked if we could please take her to the ED side. We quickly packed some activities as there would always be a bit of a wait and then Terence and Bianca left. Now the one benefit of saying that you have a child with cancer is that there is a certain urgency when they deal with you and they quickly put Terence and Bianca into an isolation room with a door so that she would not be exposed to other potentially very sick people. They saw one of the doctors, got a blood test done and then they waited:

The blood test revealed good platelets and haemoglobin, but low white blood cells and they were still waiting on the neutrophils, but in the meantime Terence and Bianca were allowed to go home. After all, Bianca didn't have any fevers, wasn't too dehydrated, was drinking well enough, so they were not overly concerned. They finally arrived back home around midnight.

When Terence phoned this morning it turned out her neutrophils were sitting at 0.37. That was quite unexpected and is much lower than when she was at the hospital on the 8th of June. So tomorrow we will ring Bianca's oncologist and see what he wants to do with regards to her chemo (keep it at the level it is now or reduce it) and when she would need to get another blood test. I know that on the 8th they increased her chemo and it is possible that this is as a result of that or perhaps that she is fighting some mystery virus again (like she did around New Years).

Tomorrow we are keeping Bianca home and I'm hoping and praying so hard that she will still be able to participate in her school production this week. Her school only does the production once every 3 years or something and it would be so disappointing if Bianca had to miss out. The past few weeks (maybe a bit longer) she's been practicing her lines at home every single day, so it would be a real "bummer" if she had to miss out as a result of low counts.


Happy birthday Bianca

First for the soppy bit and then we'll get onto photos.

Today my little girl is 6. I can't believe how fast she is growing up and in some respects I wish she could stay 5 for just a little longer. On the one hand I am so happy for her, I totally share her excitement, but on the other hand it reminds me how much we wished the time away the past 2 years since she got sick just so that we could get to the end of treatment (which is only a mere 3 months away now). I feel a little sad that in some respects she had to grow up so much faster than a lot of other kids, having to learn to swallow tablets, having to be told she couldn't do something or have something because she is sick, but in another she seems like just a typical little girl (okay big girl now :D ) whose face lights up as she rips open her presents, who makes magical wishes for fairies (which come true with a little help :D ). And most of all, she is the most amazing 6 year old I know. She's achieved so much more in her 6 years than I have in my 32 years. She is truly our inspiration and our hero and we learn so much from her every single day.

Happy birthday my big girl (even though I always whisper, "you will always be my little girl") :D

Today was great (even though for some reason I kept thinking it is Friday). Terence and I woke up around 5:30 to have time to prepare the ordered bacon and eggs for breakfast and of course to get all the other morning things done for school and work, but turned out the kids woke up that time too. So we did presents first. And wow, Bianca had so many presents to open.

Thank you to all the family and friends who sent something special for Bianca and some of you even thought of Caitlyn even though it wasn't really her birthday (but of course if you asked Caitlyn she would tell you that it was her birthday).

Bianca loved all her presents and they were all perfect - the books and clothes and craft kits and jewellery items and so on, all just perfect! Bianca also took a big liking in an ostrich-resembling puppet and she had a great time walking the creature all around the house.

Then it was time for breakfast and time for school. After school Claire from CCF came for a visit and she had a special surprise for Bianca and also brought something for Caitlyn. Caitlyn proudly looked at that and said "that's Caitlyn's". Thank you so much Claire, you really made her day!

And of course tonight we had Nachos as Bianca requested and afterwards some chocolate cake that Bianca and Terence made last night.

So all in all, a great day and a great celebration.

Then to all of you who sent emails, thank you so much! Bianca will be responding to her emails this coming weekend.


The very last day...

Today is the very last day ever that Bianca will be 5 years old. Today is the last day ever that she could count her age on one hand.

She is so excited for tomorrow, she simply cannot wait to turn 6. Of course I wish she could stay 5 for just a little longer because she is growing up so very fast. We are not having a big party for her tomorrow (as she already had a party with her friends), but instead she requested breakfast in bed (bacon and eggs) and nachos for supper and then after supper we'll have some cake, balloons and of course... presents!


Creative for a cause

Canon has a new competition going where a charity here in New Zealand or Australia could win AU$60,000 or NZ$25,000. I've decided to support the Child Cancer Foundation as well as the Make-a-Wish Foundation as they've made such a huge difference to our journey and I believe they are both so worthy of this money. So I've decided to enter these images as I simply could not choose: