Steroids...

You know you are dealing with steroids when you go to the shopping centre and ask your child "Bianca, would you like to go look at the toys?" and she says "no, I want to go look at New World (a grocery store) and look at food".

Today (Saturday) is the last day of this month for steroids (until next month again). This month was tougher than usual and although we had a pretty easy start, things did get a bit tougher towards the end of the week. Oh fun!

On Thursday Bianca had a fun Olympics Day at her school. It was just a bit of fun, but all the kids were put in different teams and then they all participated in the different activities. Bianca had great fun, and it was cool to be able to go and watch, so I followed Bianca's group as they went from activity to activity.

For most of the day Bianca was pretty happy, but towards the end, she started crying and when I asked her what was wrong she said "I don't know" and of course then she became pretty clingy. Several teachers and parents wanted to know what was wrong and all I could do was give them a little smile and say "steroids...".

For most of the week, Bianca woke up around 5am wanting food, so we've been leaving a little container with things for her to eat at that time. Then this morning she came into our room at her usual 5am / 5:30am wanting to know if it was time to get up and I replied "not yet". Then at around 6am Caitlyn called and then I had no choice but to get up. So we got up and made breakfast and first Bianca ate around 5 slices of toast and then some Milo Cereal with milk. At around 9am we went out to the shops and promptly at 10:30 Bianca declared "I'm really hungry for Subway". As soon as she was done, she immediately said "I'm still hungry".

In many respects we have it quite easy when it comes to dexamethasone. Bianca rarely gets what they call "roid-rage" where the kids get these terrible temper tantrums. I mean I've seen some kids get temper tantrums just because they are spoilt and naughty, but unfortunately it is quite a bad side-effect of the dexamethasone, so we've been lucky. But we do get Bianca being more emotional than usual and certainly Thursday was such a day with her pretty sad and clingy. And this time round we've definitely had the bigger appetite and constant hunger side-effects. And as many other parents of oncology kids on steroids will say, kids develop very particular cravings that will infiltrate their thinking, their play, their discussions - food, food, food.

So I am really really glad that we are all done with Dex for this month.

And dex strikes again (but not too bad)

Today I couldn't resist getting matching outfits for the girls. Usually I'm not one of those moms who dress my girls the same, but I thought it would be cute.

Bianca also had great fun watching Suzy tonight, but soon enough the Dex took over and she fell fast asleep on the couch. Yet another week of Dex. It's not too bad (so far), but tonight she did seem a little more tired than usual.

Today was a bit of a challenging day with Caitlyn being a typical 18 month old - one moment all happy go lucky and the next as moody as you can get and she's even had a time-out today. But she is awfully cute too and that totally makes up for the "terrible twos" that happened sooner than anticipated. But at least she sleeps really well at night and that is a big relief!

Thinking of you tonight!

It is heartbreaking when one moment everything seems just fine and then the next your world comes crumbling down when you get a diagnosis of cancer. It is heartbreaking, shocking, devastating, sad and totally unexpected. And for once you wish you were not picked for the team. I remember how it was with us, how unreal it felt, how you just want things to go back to how it was. I remember waking up the day after we got Bianca's diagnosis thinking "oh what a horrible dream... oh wait, it wasn't a dream!"

So my heart goes out to all the families that have recently received their diagnosis. I wish nobody else would have to get the news ever again, but sadly many more families will walk this road too.

What helped us cope was the decision just to focus on "now", I figured if I could just take one more step, just one more day then before we knew it we would look back. And fair enough we don't know where our road will lead, but we wanted to make time to "live life" too. I recently read a book called Hannah's Gift and something that stood out so completely was when the doctor said "make the best decisions with the information you have at the time". You can't do much more than that!

We gained so much strength through Bianca's courage, her ability to smile and to make the most of every day:

Bianca's story
Dedicated to Bianca

So if you are sitting there today in total disbelieve, shock and your heart broken into a million pieces - know that you are not alone, know that things can become more manageable, know that it is okay to cry, but also okay to smile!

Remember, you can't choose what happens in your life, but you can choose how you handle it!!!

When you're old enough, you decide...

Bianca: "When Caitlyn is a girl (meaning big girl) we can call her Kate or Caitlyn"

Lea: "Sure, but we'll wait for Caitlyn to be old enough to choose and until then we'll call her Caitlyn so she can get used to her full name"

Lea: "Sort of like how we call you Bianca"

Bianca: "Well, you can call me Bianca Butterfly"

And sure enough when I unpacked Bianca's school bag I came across her water bottle, her teacher marked it "Bianca Butterfly".

So people meet Bianca Butterfly...

A freckle on the eye

The last few days I feel a bit exhausted. You don't always realise how much energy this journey takes and then one day when you sit and think about it you realise "hey, I actually feel quite tired and wouldn't a holiday be a really nice thing right about now?" So the next few days I'll just have to take it a bit easy, catch my breath as I gear myself up for this big unpack. It really didn't help that we had this move just last week (and no holidays on the horizon...)

Today I had an eye exam (the first one in I really don't know how long). It was time, just to check how things are and my current frame doesn't seem that great anymore, it is sort of bent all out of shape (I guess it doesn't help that Caitlyn grabs it off my bedside table and passing it to me...) One thing that I found quite interesting is that I have a freckle at the back of my left eye. Nothing to worry about, but apparently you can get freckles on your eyes just like you can on your arms - I had no idea. I'm also quite impressed that after all these years, my eyes are only slightly worse than when I did my last test, so that's cool to know!

So there you have it...

Found an interesting article in the news today (although can't say I am surprised). All I can say is that I think being at Starship Hospital in Auckland was a great decision for us! I'm hopeful with the arrival of the new doctors in a month or so, things will get back to how it was meant to be.

A very special wish

Tonight we met Sue and Steve - the Make a Wish volunteers. They came to meet Bianca and discussed her wish with her. Bianca was so excited and Sue and Steve are really nice people.

I'm not going to go into details about Bianca's wish just yet as we don't yet know whether it will be granted or not, but let me tell you, if her main wish or her backup wish could be granted it would just mean the world to Bianca. So once we know more, we'll share some details with you.

PS. to all of you sending out a message on Facebook or via email saying that if you forward the message to as many people as possible, the Make a Wish Foundation will cover somebody's medical expenses - please know that it doesn't work like this. They have very specific criteria, they come and meet with the child and make sure that it is the child's real wish and then it gets discussed with the Board of Trustees and only then do they make a decision whether it is something they can make it happen. There is no way the Make a Wish Foundation will pay somebody's medical expenses based on the distribution of spam email.

Along came spring, and yet another month of treatment...

And so August made way for September and September 1st marked the first day of Spring and more specifically Day 57 of 84 of Round 3 for us. Only 1 more month before this round is finished and we start a new round. In one way it does make us feel quite excited as there is only a bit more than a year left before our treatment will finish, so it reminds us how far we've come so far, but it also does remind us how "never-ending" this treatment process is. It is always the same, never changing (well sometimes it changes a bit depending on blood levels) and the end of one month marks the the start of the next and the end of one round marks the start of the next.

The bit that I sometimes find the hardest is that people assume because it's been a while since diagnosis and because Bianca looks okay, then we must be done with treatment. "Well, no, actually we are still very much on treatment and will still be until next year September and until then it means chemo every single day".

Today the school informed me that they've had their 3rd case of chickenpox the last couple of weeks, so I decided to ask Bianca's doctor about what we are supposed to do. Each time I phone, they pretty much say the same thing "Bianca's already getting the Acyclovir and IVIG that they would give kids with chickenpox exposure" and he confirmed that basically at the moment, Bianca is probably the least likely patient to get chickenpox (as she is getting monthly IVIG transfustions as well as daily oral Acyclovir tablets) and so we don't really have to worry at all. There is still a chance she may actually develop chickenpox, but then they will give her IV meds and possibly up her current dosage of her oral meds. So all good.

Bianca has had a bit of a cough and definitely a runny nose, but she seems fine, happy, no fevers and so he is not worried about it. Her neutrophils are a bit higher than they would like to see, but that is probably because of the infection she currently has. Her one ear is a little bit red (probably a bit of a viral infection), and if it does become sore or she develops a fever, then the GP can give her antibiotics. So until then, we won't worry too much. That is good to know.

Her counts are otherwise really really good and so she remains on the 100% dose oral chemo.

So today was one long day, but good results and we can't complain. As always they are really efficient here, we have a great doctor and our nurse today (Nurse Amanda) was excellent. We've had Nurse Nicky before and she is just as great! The next appointment will be on the 29th of September and that will be our 3 monthly theatre day.

One aspect of being at a busier place is that it opens my eyes to the journeys of the other people and it really does make you realise just how much you have to be thankful for and when I look at our situation - we have just so much to be thankful for!