What is essence?

Tonight Bianca was watching Suzy's World. It is quite an entertaining DVD with all sorts of natural experiments like what happens when you do baking and you don't add some ingredients and so on and how jelly beans are made and so on. Terence thinks it is pretty funny and he would sit there laughing at her antics. So in the one episode she made several muffins - one with all the ingredients, one with no oil, one with no baking soda, one with no egg and so on and then she discusses why it is important that you need to have all the ingredients. So when she was adding the ingredients at one point she said "add the vanilla essence" and Bianca asked "what is essence?" (Hmm, over to you Terence...). At the end of the episode, Bianca learned that cooking is a science and you have to get the process right!

Earlier today it was resting time and we were all having a nap (aah, nothing like an afternoon nap on a Saturday afternoon). At one point I realised Bianca wasn't resting anymore and she went downstairs chatting to Jody. I called her back to her room and asked her why she wasn't resting when we told her to, her answer "my head wasn't screwed on quite right".

It is official - I hate moving!

Our move to the new rental home went as good as any, I guess. It's never fun, loads of hard work and trying to get your head around the logistics such as what to do with Caitlyn while the movers are busy. But it all worked out fine. Of course my least favourite thing of all has now become a brown cardboard box and the whole action of having to pack things in and unpack them again.

The movers took some of the smaller boxes and items through the top window and that saved some time.

So basically Thursday we spent moving all our stuff and I have to say it is amazing how many other small trips you end up making in the car. Friday I went back to do the final clean-up. Of course that is just as little fun as the actual move and it is then that you realise just how big a 4 bedroom house is.

Most of you will remember when we moved into the "old" house that it was left in a pretty disgusting condition by the previous tenants (their old soaps in the showers they didn't clean, cupboards not wiped out, carpets not even vaccuumed, sigarette buds lining the outside area), so I found it quite amuzing when the landlord arrived to do the final inspection and they looked through all the cupboards, checked the showers, checked the toilets, the oven, the dishwasher and checked all the cupboards, that after they didn't seem too worried by the way the house was when we moved in. Of course we did complain about it at the time and they ended up sending a cleaner for 2 hours, and it didn't help that we've had so many other problems as well that we complained about. So I couldn't help wondering if they were trying to "catch us out" or if they were really just trying to avoid a similar problem. But either way, the day spent cleaning paid off and that house was in a way better condition than when we moved in - it actually looked clean.

The new house seems a bit colder, but I guess that is because of the tiles and wooden laminate flooring at the bottom, but certainly this house seems in way better condition and it was clean when we moved in. What a difference! We also think the layout is way better and the kitchen has way better storage than the previous house (and an oven that is all digital).

Taking a break, having an early supper in our new dining area:

Caitlyn having fun watching some Tom and Jerry on Terence's laptop:

So I am hopeful we are able to stay for a while. And we do feel that this house wouldn't contribute to any health problems with Bianca (who is still coughing a bit and seems to have developed a runny nose).

On Friday it was also Daffodil Day and I bought some real daffodils in support of the Cancer Society. They are not the same as the child cancer foundation, but this one is aimed at adult oncology patients and of course as a society they support research and so on. I don't usually have much luck with live flowers and I am hopeful that they will last just a little bit.


Thank you!

Today I got a really nice comment. Well, all our comments and messages are nice and we so much enjoy getting them - it is so uplifting reading it all and realising the support we have.

Some of the comments are also so inspirational, about people who walked this journey before us and it is good to know that good things do happen.

One of these comments was about a special video dedicated to Bianca. It is so beautifully done and I just love the song, but haven't heard it before. It really brought back memories of the road that we've walked and a reminder that we still have quite a way to go.

So thank you so very much and also thank you so very much to all of you who follow our journey.

Different people see this situation differently, some see this as an utter nightmare (which trust me, there are loads of times where it really is nothing but one long nightmare), others see this as a battle or a fight (I have to admit, that I do think of it as this too), but mostly I see this as a journey. The way I see it, life is a journey. Sometimes you will get to a crossroad and you won't quite know which way to go (or if you are like me, not really able to read a map properly, getting lost and ending up in a place you didn't mean to - so then you stop, ask for directions or try reading that map again...). Sometimes it rains a lot, or visibility is poor, or there are lots of uphills. Other times, the road seems fairly straightforward, but it can only happen when you have gained a bit of an understanding, when you are prepared to just take one little step at a time and take time out when you need to. When you have support in place.

So for us, this is a journey and without you, this journey would have been incredibly hard, nearly impossible and it is only with your support that we've been able to stay on track and stay focused to where we need to go. Of course we can never be sure what lies around the next corner or just over that mountain, but we are sure that we will deal with whatever comes along and do it to the best of our abilities. So thank you that you are there and that you care!

Of course we admire Bianca so much because she is such a strong little girl (I mean big girl - sorry Bianca). We learn so much from her!!!


A hug-kiss

Tonight when it was time for Bianca's chemo and bed, Terence asked her to give me a hug and a kiss. She came to me and planted a kiss on my cheek and then said "I gave Mommy a hug-kiss" and Terence asked, "what is a hug-kiss?" to which Bianca replied, "it is when you give a hug with a kiss".


Moving... again

So tomorrow is the day. The day that we are moving... again. Just 3 months after our big move from Wellington. In one way I'm really really not in the mood, but in another I know that we really don't have much of a choice. The good thing is that it is really just in the next street that we will be moving to. Currently when you get to the roundabout (or traffic circle), you turn left and that is our street and now instead of turning left at the roundabout, you'll be turning right and it is is right there. So it feels good that it is really just so close, but in a way I have a feeling we will end up leaving a lot of stuff until the last minute. I'm hopeful we won't, but then I know us pretty well by now...

Other than that, things are going pretty well here. Bianca was coughing quite a bit last night, but she woke up happy enough and so we are not too worried at the moment.

Tonight will be a busy night and we will first do our inspection at the new house at 5pm (and that way we'll be able to have an early start tomorrow) and then at 7pm we are meeting the volunteers of Make-a-Wish. That is so exciting!

Well, let me go and pack!


Some stories, good food and great company

Today was a great day. I had an enjoyable day for mothers organised by Tam (who is on a CCF committee).

The event was in the city and on the way in one of the streets I noticed these big electronic boards displaying how many parking spaces were left in some of the streets.

Mistake number 1 - don't ask your husband when you're not sure how something works.

Lea: "so how do these boards know when somebody parks in a parking?"
Terence: bursting out laughing and then saying "duh, you don't think it might just be hooked up to the parking meters and calculate the parkings each time somebody takes a ticket?"
Lea: (Mistake number 2) "Oh I was trying to see little sensor things next to each parking" (Okay stop laughing at me now...)

(It definitely brought back memories years ago when Terence and I moved from a small town to Johannesburg and for the first time in my life I drove on a motorway. So every morning on the traffic reports I would hear them talk about stationery trucks and finally one day I asked Terence so which stationery shop had their trucks breaking down every day. After Terence nearly crashed the car, laughing, he finally explained that in that context stationery wasn't relating to a stationery shop where you would buy pens and paper, but meant cars just sitting next to the side of the road. Okay then, at least I can claim that English is not my first language and not coming from Johannesburg, can't say that I've ever encountered stationery trucks before.)

So anyway, back to the event...

It was so nice (the event bit and not the Terence laughing at me bit). We had the option to do a bit of a presentation to tell the other mums a bit about ourselves. I chose to show them some photos and tell them a little bit about us, a little bit about Bianca's treatment and to share some of our coping strategies. Another mum shared photos of the beautiful quilts she made with her mother, Chris brought her scrapbooks that are beautifully done, Hannah shared a little video clip that her 9 year old daughter helped her put together and it was very nice with music and everything. Tam shared with us a little bit about her son's health problems that had nothing to do with his cancer, but certainly must have complicated matters for them. I cannot remember what it is called, but with the slightest bit of friction he would develop painful blisters and as a result the doctors and nurses were not allowed to use any kind of sticky tape on him at all (even though they did on occassion which would end up being a painful situation).

I haven't had the opportunity to meet many mothers yet, so this was just so great to get together and to find out more about their journeys. I did get to meet up with Laura's mum and Peter's mum and that was pretty cool! I've been following their journals long before we came to Auckland so it was nice meeting them in person (although I have met Peter's mum when I came through to find a house in Auckland).

We had a very nice lunch (sorry Tam, I cannot remember who prepared the nice meal) and then we all just chatted until it was time to go home.

It was very very nice!


So proud

Today was a pretty exciting day! Bianca received a certificate at the whole-school assembly. Parents are able to attend assembly and so it was so cool to see Bianca get up and get her certificate. Every week they choose a child from each class to award each of them a certificate for something they really made progress in, extra effort or whatever. It is pretty cool the way they motivate the kids. And today was Bianca's turn.

I really enjoy going to assembly each week because at Oteha Valley School, they get the kids to lead assembly. So every week a class will put together a programme and proudly share the work they've been doing, their reading ability and they will basically open the assembly, invite the principal and teachers to make announcements and at the end they will thank everybody for coming.

Things are so different and our assemblies never went like that when I was going to school.

This morning at assembly the kids sang a really nice song. I'm not familiar with it and I've been looking to find if I could actually find the music clip of it, but no such luck. I have managed to find the words:

Ma te mahi ka ora
(John Phillips 2000, Kiwi Kidsongs 11)

Rise and shine - it's a brand new day.
Ma te mahi ka ora.
We've set our goals, and we're on our way.
Ma te mahi ka ora.
Step by step, mile by mile.
For dreams to come true, it's up to you -
Let's start right here and now.

Chorus x 2
Ma te mahi ka ora.
Remember this when you wake each day.
Ma te mahi ka ora.
Cos that's the Kiwi way.

When you're down and you've lost your way.
Ma te mahi ka ora.
We'll help you on your way again.
Ma te mahi ka ora.
Step by step, mile by mile.
For dreams to come true, it's up to you -
Let's start right here and now.

Chorus x 2

Step by step, mile by mile.
For dreams to come true, it's up to you -
Let's start right here and now.

Chorus x 2

Ma te mahi ka ora.
Cos that's the Kiwi way.

I also really like the National Anthem although have to admit that I'm still working on learning the words and Terence thinks it is hilarious that Bianca knows it way better than I do.


You can't help laughing

I've never laughed so much in all my life when I read this post. I could hardly read it to Terence who thought I was utterly mad.

As long as it comes with chocolate

Tonight Bianca and I made little chocolate balls. Well, basically you crush up some biscuits, mix that with some icing sugar and cocoa, add some butter and apricot jam and then you mix it all up and make little balls that you then dip into coconut. They are really yummy.

Anyway, I've been meaning to make them this whole week, but each time we just run out of time. We pretty much have to wait for Caitlyn to go to bed because an 18 month old and a variety of ingredients won't really go well together. Well, technically she is only 17 months old, but will be 18 months old tomorrow.

Anyway, so Bianca had fun helping to measure out the ingredients and mixing it all together and then she decided she would like to taste it. At first I thought she wouldn't because she isn't a fan of apricot jam or coconut. But she tried it and then said "this is yummy!"

So then I pointed out that she actually tried two new things - apricot jam and coconut, and she said "yes, I can taste the apricot jam". I then suggested that maybe next time we can put some apricot jam on a sandwich for her. She thought for a second and then said "...if it is in chocolate, then yes".

Driving lessons anyone?

Yesterday Jody drove somewhere and Bianca went along. Jody was explaining how in Canada they drive on the other side of the road. Bianca listened to this and then as they approach a traffic light Bianca said "that's a red light, you need to stop at a red light".

Anybody for driving lessons?

Only one week to go...

I realised with a bit of a shock it is only 1 more week and then we're moving. In one way I'm not really keen to move again, but in another we are looking forward to it as the new rental home will hopefully have less problems and we can hopefully settle for a while. But still, no matter how you look at it, moving is not fun. It is hard work. So I've been putting it off to pack boxes, but now I'll just have to get going otherwise we will have problems.

So we've pretty much got the moving company secured, but we still have to organise a whole load of other things like phone and gas / electricity connections and so on.

The good thing though is that many of our things are still in boxes and really all I need to do is fill them up and seal them, but there are always more important things to do (and always tomorrow...).

And as they say if it wasn't for the last minute, nothing will ever get done - and that's us for you in a nutshell!!!

A sad farewell

It is with great sadness that I learned that Adrian Sudbury passed away. He was such an inspiration to all who followed his story and he will be sadly missed.

Adrian was very committed to a campaign to help raise awareness on becoming a bone marrow donor and so a Facebook page was started along with his blog to continue with this.


From the mouths of babes...

Caitlyn is so cute! She is busy learning to talk.

"Caitlyn what noise does a horse make?"
"What noise does a duck make?"
"And a cow?"
"what about a tiger?"
(usually followed with a "boo" to give you a fright)
"and a dog?"

She can point to things like her hair, nose, toes, mouth, teeth, tongue and so on.
She can say "no" for nose, "no-nay" for no-way, "mo" for more, "ba" for bath, "tee" for teeth or toothbrush or brushing teeth, she can say "bye-bye" and "ha-yo" for hello, she can say "my" for mind" and "me".

The other day I was picking up the bigger pieces of food that Caitlyn dropped on the floor during mealtime (as babies do) and suddenly she stood right against my back saying "neigh!" I guess she wanted a horse-ride...

She also really likes singing and tonight she sang (with the right tune) "ee-i-ee-i-o, moo-moo-moo". I couldn't stop laughing!

In 2 days my little baby will be an 18 month old - she is growing up so fast!

Wishing, wishing, wishing

Next week the Make-a-Wish volunteers will be visiting us. They will come and discuss with Bianca her wish and then possibly make that happen. So we've been discussing with her what sort of things could be a wish and Jody said if she had to make a wish, she would wish to swim with dolphins. So of course Bianca said "that's what I want" (which of course isn't really what she want and I really doubt that a 5 year old girl could actually swim with dolphins, could they?).

So tonight after I read stories I reminded her that next week we will get this special visit.
  • Bianca: "Oh I've got it, I want to swim with dolphins" (I fully blame Jody for this one...)
  • Lea: "Well, I don't think you can"
  • Bianca: "Give me 3 reasons"
  • Lea: "Hmm... well, you're not allowed to swim as long as you have your port (I pretty much know this for a fact), you are too young (I don't know, could little kids swim with dolphins?), you are not grown up enough yet (I'm sure Bianca will be ready to argue this point)"
  • Bianca: "Give me 4 reasons"
Bianca has her wish and 2 backups in place, but she needs to be sure it is what she wants and this is what they will discuss with her. It is slightly different to what she initially wanted which we established would be hard to make happen, so she's had to think of something else. This is so very exciting!

The way it was meant to be

I often think what a great decision it was to move to New Zealand nearly 4 years ago. Well, on the 6th of September, it will be exactly 4 years since we came in 2004.

It was a bit of an eye opener too. Firstly to come here and realise how very different it was to the life we left behind - but in a good way. Different because it was safer here in New Zealand. Much much safer than in South Africa where we lived up to that point. For one we didn't have burglar bars and security gates or electric fencing, and we certainly haven't experienced the same kind of fear that walks hand in hand with the violent crime that you find in South Africa. So when we arrived, this became home and not long after, we managed to get permanent residency.

It was also an eye opener because when you make such a big move you will have some family and friends truly supporting you, and those who don't really and sit there waiting for you to return - disappointed at what a big mistake it was. Of course we never did this, we've always been happy with our move.

Initially we started a website at home, run from our own computer that we would keep on at night so our friends and family could access it, but it soon became clear that the interest was minimal, maybe the process was complicated as it wasn't a typical website. After that we would send out little newsletter type emails, but of course that makes it hard to manage when some people could receive images on email, others couldn't and some could receive original sized images and others couldn't. So it became a big mission just to customise each newsletter email to suit everybody and then to send it in batches because our email could only send a certain number at a time and more often than not we would unintentionally leave somebody out.

When Bianca became sick we started this blog. It's been great to have a central point to communicate updates and to post photos. It's also been interesting to see the stats of where our support was coming from and I have to say that the US is a clear winner with New Zealand in close second. We have some readers in South Africa (and I have a fair idea who they are). And then a number of supporters in other countries - Sweden, UK, Australia (mostly Perth and Melbourne, but on the odd occassion from some other regions), Dubai, France and several other countries. So thank you to all those who came along and support us. And thank you to the family and friends who remained in touch, who would continue writing to us with their usual, ordinary news despite the fact that we don't always have the opportunity or luxury of time to sit and write messages too.

For the first year since Bianca became sick, we spent most of our time going backwards and forwards to hospital for visits and more hospital stays than many people would experience in their life (106 days and hopefully no more). And then we always play "catch up" - catching up with the laundry, the never-ending dishes, the usual house work and since then we've moved from Wellington to Auckland and will move to another rental home in the next week (because of issues with the current rental home). In between there is Caitlyn with her own set of needs who was only 3.5 months when Bianca was diagnosed. And then throughout the day from breakfast to bedtime, Bianca is on a medicine schedule (much like having a baby all over again). Wake up, get breakfast, give her her morning meds (Acyclovir and sometimes Co-trimoxazole and Dexamethasone), then comes lunch time and it is time for the next Acyclovir, then comes dinner time and it is time for the next set of meds (Acyclovir and sometimes Co-trimoxazole and Dexamethasone) and then set the timer for 2 hours and then chemo and then bedtime.

And then (especially in the beginning), you are trying to process and understand what happened. Every day is a day for learning, not only do you have to get used to the never-ending medicine schedule, but there are times where it gets adjusted (just to keep things interesting), you have to constantly plan (are we going out? We have to remember the [whatever medicines Bianca will need to get] ). We have had to spend a lot of time just learning about Bianca's treatment plan and what to try and expect. Starting school was another aspect that took a lot of focus because it isn't as simple as arriving there with a new bag and uniform and starting. We needed to work with the school so they understood our expectations, we understood how it will work, not sure if Bianca would cope with the days at school, not sure how steroids and school would work together, not sure how the different side-effects of the different drugs and treatments will affect Bianca when she is in a school environment. Just yesterday I thought (at the CCF coffee morning), it is quite funny when you get some of the oncology parents together - we really do sound like a pharmacy or like medical professionals (but then we had to pick up this new information just to gain some control).

And on top of all of this, it does take a lot of energy just to be positive. Just to pick yourself up and look beyond the cancer treatment, to "live life" despite the cancer.

We've decided from the beginning that we would try and have as many "normal" days as possible, we would still have the same expectations of Bianca as before but we would be a bit more flexible. Just as before we maintained discipline. We expect good manners, we expect Bianca to sit still at mealtimes, we expect her to eat her food and we certainly do not "reward" Bianca when she doesn't eat by giving her treats afterwards (unfortunately chemo changed her appetite, but as long as she still eats something healthy then we are happy). We expect Bianca to be gentle and kind and not to scream and shout at people and as a result we don't have a child who throws temper tantrums when she doesn't get her way or when we go somewhere and she didn't want to leave. Fair enough steroids do have a huge impact on behaviour and eating habits and so on, but she knows our expectations and she tries really hard to fit in with this. From our side we make sure Bianca feels safe, where she has a voice, she is able to discuss her concerns, her worry and her fears. She is able to discuss it when somebody hurts her (whether it is at school, at the hospital, wherever) and she knows that we are on her side and that we would protect her as much as we can. We always discuss what will happen, we've never lied to her (i.e. "it won't hurt" when we know something will). So from that point of view Bianca has always felt safe and important.

We've decided from the beginning that we will work hard to be positive. We didn't want to look back and only remember being sad, we wanted to have fun in the process too, see Bianca being happy and laughing and so on. So just as before Bianca became sick, we try and play a lot of games at home, go to the park, read stories, visit the beach, MOTAT, the zoo or whatever (since Bianca became sick, going out has become more complicated, but we do our best). We want our children to feel loved, cared about and that they get sufficient attention. We believe kids shouldn't have to work to get attention and it wouldn't be fair to push them aside just because we wanted to do something else, so we do our best and spend a lot of time with both our girls.

Being positive requires effort. In this journey it would be so easy just to sit in a little heap feeling sorry for ourselves. When you think about it, this journey is 2.5 years long and that is just the active treatment part, there were many days in the beginning that I thought this felt exactly like a prison sentence. So yes, we've spent a lot of energy on this aspect, but I'm glad we've decided to be as positive as possible, it certainly has made things easier and more manageable - but unfortunately it does sometimes leave you exhausted at the end of the day.

And through this journey, I realised one very important thing, we were meant to come to New Zealand when we did and obtain our permanent residency when we did. At the time we didn't know that a couple of years later, Bianca would be an oncology patient. And our move to New Zealand was a blessing, because we don't have to pay for Bianca's treatment. We are in a place where we don't have to have medical insurance, we don't have to go to a private hospital - the care Bianca receives is really good in comparison to other places and if we had to pay for her treatment, it would be incredibly hard - I have no idea what it would cost (but I understand (not counting every single thing Bianca's had and will still get) a single Peg Asparaginaise shot would be something like NZD10,000 and Bianca had 3 of those before she had to get the 6 Erwinia ones which were slightly different, but served the same purpose).

So often when you make a decision it is not always clear why you have to make that decision, and often people blame you or they don't accept your decision, but in the end we cannot make decisions to please others. We have to make decisions that would be the best for us and for our children. So with our move to New Zealand we've given our kids the chance to have a great childhood in a safe environment, have good education and good opportunities going forward and (even though we didn't know it then) good medical care for Bianca.

Do we regret coming to New Zealand? Absolutely not!


Still coughing

Bianca's been getting a coughing fit every so often. Still no temperatures to worry about. A big relief because apart from not really wanting to stay in hospital at the moment, I understand from Peter's mum that the hospital is completely full. Oh dear!

So today I decided to keep Bianca home from school because I want to see if she can get over the worst of this cough. She won't really be able to concentrate very well if she was to have coughing fits in class.

So overall things are not too bad, just wishing this cough would disappear. It reminds me of last year when Bianca ended up in isolation on oxygen for around 34 days with an unknown viral infection.

Let's hope the Acyclovir and IVIGs Bianca gets regularly will really do the trick!

Thank you so much for all the wonderful messages (emails and some comments) of support we've been getting! It really means a lot to us!

Introducing Fire Chief Bianca

On Sunday Bianca had a wonderful surprise from MOTAT. They arranged for her to have a drive in an old fire engine. Bianca was so excited and she couldn't believe it when they said she could actually make the siren go.

Unfortunately (typical Auckland weather) it was raining, because if it wasn't, we would have gone in a fire engine without a roof. But this one was pretty cool too.

Bianca wore a special fire chief hat (thank you so much Bridget!) and she sat right in the front where the fire chief would usually sit.

Bridget (the events coordinator), Terence and I sat on the little bench where the fire fighters used to sit just behind the fire chief and the driver (John Walker).

This specific fire engine was a 1969 International Fire Truck which was pretty impressive.

I understand that this particular fire truck is able to go up to around 130 km/h, but we didn't go that fast on the motorway - thank goodness! I don't think I could have handled going that fast on a fire truck. Bianca had fun waving at the people going past us and our fire chief (Bianca) will tell you that we didn't see any fires on the way (also a good thing, because it would be a pretty funny sight if Terence and I had to run around trying to kill some fires).

When we got back, Bridget had to get off and we stayed on while they were parking the fire truck (wow, really impressive how they do it). Just as we went past, Bianca made the siren go and she thought it was really funny: "I made Bridget jump".

Bridget mentioned that MOTAT got behind the Child Cancer Foundation before and in particular when they collected wrapped presents for CCF kids instead of an entry fee one day close to Christmas last year. They collected so many gifts which the children then managed to open for Christmas. I think that is so special!

I would like to say a big big thank you in particular to John Walker (Ex-Volunteer Fire Fighter and currently Fire and Emergency Collection Manager), Ian Hambly (Road Transport Collection Manager) and Bridget Johansen (Events Coordinator). Thank you so much for organising this very special day for us. We had so much fun and it really was one of those "once-in-a-lifetime" opportunities. Thank you for making Bianca's day special.

Here is Bianca sitting next to John Walker, our driver:

And pictured here with Bridget Johansen (on the left) and Ian Hambly (on the right):

Afterwards Bianca wanted to stay on and look around. She really enjoys visiting MOTAT. Bridget took us to see some of the other fire engines and Bianca enjoyed having a look.

She also loved visiting the mirror maze and she was the leader and took us around. We had loads of fun exploring a section with some displays like an earthquake simulator. We all went in the Voyager 4D simulator for a "trip to the South Island". I got some motion-sickness towards the end, but Bianca and Terence thoroughly enjoyed themselves. Terence and Bianca also had a look at a display of a very old train. There is so much to see and do and if you are in the Auckland area or coming for a visit, this is a great place to come to.

Here are some of the other things we saw:

In September there will be another day (Girl Power - The Heritage of Women) that we will definitely not be missing. So come on, if you are in the area, join us! It looks like it will be loads of fun and Bianca will have a chance to participate! And yes, Terence will also be joining us (of course he is trying to make this my birthday present, but he'll just have to keep coming up with ideas!).


Temperature watch

Tonight we are on temperature watch. Bianca's temp is sitting in the high 37's and at times she seems to be breathing a little fast. Still coughing a lot and we are just hoping that it doesn't become worse. Overall she is still pretty interested, still has an appetite, so for now just keeping an eye on it and having a bag packed. Fingers crossed!


Fingers crossed...

Bianca has been coughing quite a bit and days like today I actually wish we had hospital visits more often and not just once a month. I don't know at which point Bianca's cough might become a problem. Last year Bianca coughed pretty much constantly for a month (possibly longer) before it finally resulted in a viral infection (and a 34 day stay in hospital). Last time we were at the hospital the doctor assured us that her chest sounded clear.

Yesterday I kept Bianca at home because she coughed quite a bit the night before and didn't sleep very well.

I'm hopeful the cough is really just as a result of a post nasal drip and nothing else. I really don't feel like staying in hospital at this stage.

So fingers crossed...

Blessing in disguise

I never thought I'd say this - but giving Bianca Acyclovir 4 times a day, every day, turned out to be a blessing in disguise! Somebody in the junior section at Bianca's school was diagnosed with chickenpox. This child is not in Bianca's class, but all the kids in the junior section play together, and they have assembly together and so there is a small chance that there was a contact. Until the end of Bianca's treatment (September 2009), chickenpox and measles and things like that will be a risk to her. Well, it turned out that the Acyclovir she is currently getting and will probably keep getting for now is exactly what they give to kids when they have possibly been exposed. Of course this doesn't mean we will take unnecessary risks and we'll still be informed and still contact the doctors each time and discuss with them.

I also understand that there is a risk that one of the children in Caitlyn's jumping beans class might also develop chickenpox after a case at his daycare and so this means for the next 3 weeks or so we'll keep Caitlyn away to make sure the risk has passed.

Earlier today I visited one of the mums from school whose daughter is in Bianca's class. Up to now we'd see each other each afternoon as we all wait for the final bell to ring and we've chatted a bit. So today I went to visit her and typical me - I got her onto blogging (I just can't help myself). So it's been fun helping her set it up. Here is her blog.

This weekend will be mostly quiet until Sunday. Sunday we will be at MOTAT at 11am for a really really fun surprise that they are organising for Bianca. We are so excited and cannot wait!!!


Things going great

I think tonight and possibly the next few nights we'll be in for a pretty tough time. Caitlyn has a pretty bad cold. Overall she's okay - playing and generally happy, but not much of an appetite. Other than that, she's got a bit of a cough and a runny nose. So now I'm hopeful that Bianca doesn't develop a bad infection as a result of this and I guess this will be a test to see how well the IVIG transfusions really work. So as always, we'll just take each day as it comes.

And Bianca? Every morning she says "I'm great!" and that's pretty much how things are going for us at the moment. Things are great! Bianca is all settled at school, and it's been a while since our last hospital stay. Every day she is so excited to play with her friends. I'm hopeful we can continue this way...


Meeting Goldilocks and the Three Bears... and an elephant

And in typical steroid style - Bianca was constantly hungry on Saturday and Sunday. And even though we are technically done with steroids for the month, it does take a few days to get out of her system. So I've been enduring constant requests for food, snacks, water, food, snacks, and "some milk please". And of course each time I have to go up and down a flight of stairs, trying to open the baby gates, whilst balancing the snacks, food, milk or water with one hand and trying to prevent Caitlyn joining me on the stairs. So it's been a bit full on, but we can't complain because I'll take the hunger any day, but please just not the bad moods.

Saturday we didn't do much at all.

Sunday morning Terence left for Wellington (he'll update when he gets back) and Jody, Bianca, Caitlyn and I set off for Auckland zoo. We were quite early (a good thing as we managed to find parking close to the entrance) and so we just took a nice relaxing stroll looking at all the different animals. Of course every few minutes Bianca asked for food or a snack (and thank goodness I went armed with a bit of a supply). Then at 12:30 we went to the Old Elephant House for the CCF mid-winter bash and it was great fun, although quite crowded and we didn't really get to meet any of the families.

There was face painting and Bianca wanted to be a clown (which she then wiped off after a few minutes).

Bianca loved seeing all the different characters - Goldilocks and the 3 bears, a pirate, a pink panther and loads of people walking around with the cutest animal hand puppets.

And of course loads of goodies to eat, so both kids were thoroughly hyped up on sugar.

The absolute highlight was when they brought two elephants and all the children had a chance to feed the animals and touch them too. Bianca said "that was my favourite thing of all".

So a big big thank you to The Child Cancer Foundation, Auckland Zoo and everybody else for giving us such a special day. It was wonderful!


Steroids all done... for this month at least

I have to say that yesterday was definitely our worst day of steroids for this month. Today was great and apart from craving sweet things to some extend, Bianca is in a pretty good mood. Her teacher was so impressed with her great attitude this week, that Bianca received a certificate during morning assembly today. I am so pleased this week went so well because I didn't want her to miss out on school just because she was on steroids and I'm hopeful that all the other months of steroids will be just as "easy".

On Sunday we will be joining CCF Auckland branch for their mid-winter bash at the Auckland Zoo. I have no idea what will happen, but the little bits that I've heard, it sounds as if it will be lots and lots of fun. But more on this on Sunday evening.

On Sunday Terence will also leave for Wellington for a few days for work stuff and at the same time will join in with the Dad's day out in Wellington.

And in the meantime I'll be starting to pack again. That's right we are moving again. Just up the road though. We've lived in several places before and I have to say that "Faulty Towers" (my nickname for this place) has had more problems than all the others combined, and in a matter of less than 2 months too. But basically we've had a pretty bad start and on the very first day, we discovered that the place was in a pretty filthy condition and since then we've had a couple of leaks (with water dripping from the light fittings by the front door and the kitchen) and we've got this toilet that seems to block up for no good reason. Okay fair enough it doesn't leak constantly, but we are worried that leaky home = dampness = mould = I don't think we want to sit and wait around.


Only 1 more day of steroids for this month

This morning Bianca was pretty emotional and the slightest thing would set her off crying. She wasn't keen on going to school, but in the end I convinced her to go. I would be worried that if we just let her stay home for no good reason, then she might use this an excuse at a later stage. So we went to school and I asked her teacher to keep an eye on her and if need be to phone me and I would get her early from school. But in the end she had a pretty normal day at school. Then when we came home from school she only wanted specific things to eat - hello cravings!!! Then supper time came and she had no appetite and complained of a sore tummy, and just when I thought my evening couldn't get any more interesting, Caitlyn mastered the art of climbing out of her cot. Oh goodie! It was bedtime and I was in the kitchen area and I heard Caitlyn "talking" from her room, so I said "bedtime Caitlyn!" and suddenly I thought her voice sounded really close and there she was, outside her room, busy climbing up the stairs, looking very proud of herself. So from now on, we'll have to keep her door firmly closed.

Right now Bianca is fast asleep on the couch - around 30 minutes earlier than her usual bedtime and I'll have to wake her up for her chemo (and she won't like that...).

Watch the space - the next two weekends are going to be very very exciting. This coming Sunday we are going to have fun at the zoo and the next Sunday we have a very exciting day with MOTAT - but more details on this later. I can hardly wait!!!


Oh the joy of steroids...

Day 3 of steroids done. 2 More to go.

Bianca still seems to cope pretty well with school despite the steroids. I'm so pleased! It was only this afternoon after school when we were busy with homework that I could see that she struggled a little bit with her concentration. She still did a pretty good job, but she was definitely not herself. And then came supper time. Because she is often pretty fussy I often end up just giving her ProNutro. Okay I know it is a breakfast cereal, but at least it is healthy and it has loads of vitamins and minerals, so this way Bianca still gets all the good stuff. But tonight she wasn't really interested in ProNutro either.

Bianca: "It is too cold"
Lea: "But that's how you make ProNutro - it is supposed to be cold"
Bianca: "But I want something warm"
Lea: Okay, what sort of warm food?"
Bianca: "Maybe oats"

So off I went and made some oats for Bianca. She only ate a little bit of oats before complaining about a sore tummy. We'll just keep an eye on that tummy (at the end of Bianca's Delayed Intensification phase a sore tummy was the only indication of an infection).


Much better than expected

And Day 2 of steroids done! Only 3 more days to go. I waited the whole day for the school to call because I've heard horror stories of kids on steroids and school, but Bianca's teacher said she had a great day. So that's a pretty good start (but of course we'll just take each day as it comes knowing that steroids are often unpredictable).

So all in all, I'm really pleased with today.


A busy Day 29

Today was a very very busy day for me. Started off with taking Bianca to school, briefly chatted to her teacher reminding her that it is "steroid week", dropped off Bianca's Acyclovir tablets at the office (the school has to give Bianca's lunch time dose to her). So that was Bianca sorted. Then it was time for Caitlyn's jumping beans. She had a great time and loved running from one activity to another (have you ever tried keeping up with a 1 year old going crazy? Quite an exhausting job! And every so often she will tempt me by sitting on the small stage in the hall, patting the space next to her for me to sit down, just to get up within 10 seconds running to the next activity). The group activity is still a bit of a challenge, but we are getting there. I was pleasantly surprised to find that one of the mothers used to work at Starship so it was nice chatting to her. After Jumping Beans, we quickly dropped Caitlyn off at home and then it was time to get Bianca from school and to make our way to the city for her monthly hospital appointment.

When we got to the lab for Bianca's finger prick I thought we would be in for a long wait as the waiting area was pretty packed, but it soon cleared and when it was our turn, Bianca was an absolute star. No tear in sight! I remember the first time she had to get a finger prick - she was absolutely terrified and here she is today, confidently walking in, sitting on the chair, holding her finger and no complaints whatsoever. When we were done there I told Bianca how very proud I was of her and she said "I didn't cry, but it was sore".

We had time for Bianca to play in the play area and we ate some lunch before making our way to Ward 27. As always Ward 27 was pretty busy. Just as last time Doctor MacFarlane was right on time. What really impressed me about him was that it was all about Bianca. He came to the waiting area and called: "Bianca" and then as we entered his office he asked her how she was doing and whilst I did all the usual discussing how things have been since the last visit, I really felt that Bianca was more important than me. And that is right - after all, she is the patient, not me. So that was pretty cool. At one point Doctor MacFarlane said to Bianca that doctors have to write a lot. We asked Bianca if she would like to become a doctor one day. "No". What about becoming a nurse? "No", or maybe a Play Specialist? Her face lit up - "yes, she would love to become a Play Specialist". I said "but I want to become a Play Specialist" and she said "yes you can, but not at this hospital".

Bianca's counts were really good. Too good, and our neutrophils are sitting at 5. So they upped Bianca's dose from 75% to 100%. They aim to keep the neutrophils between 1 and 2 and if it dips below 1, then they reduce the dose of the oral chemo to give the body chance to recover and if it goes above 2, then they up it so that we know the chemo is doing its job. We also discussed Bianca's cough, but the doctor is not worried and her chest sounds clear. That's good to know.

We also had Nurse Nicky and just as last time she was great with Bianca. We really are in good hands! Don't get me wrong, I really miss the Wellington bunch. They were there from day 1, they saw our tears, our confusion, they were there each time we were stuck in an isolation room, our ups and our downs. They became our friends. But it is good to know that here at Starship we are in good hands too!

Today was Day 29 of 84 days of round 3. And basically it meant getting Vincristine at the hospital, we started our 5 days of steroids and Bianca got her monthly IVIG transfusion. Thank you so much to all of you out there who donate blood, platelets and plasma. You are making such a huge difference to kids like Bianca! The Vincristine itself is really quick, the IVIG takes around 2 hours to run so it was a little bit of a long afternoon for us. But we took the opportunity to do Bianca's homework and she watched a DVD and then we got a really nice surprise from Barbara - the Play Specialist (I think her name is Barbara). She brought Bianca a book (that she can keep). It is all about a cat living in a library and Barbara thought this would be great as Terence works in a library. Wow, thank you so much Barbara. We also got another really exciting call - but more on this a little bit later...

So that was today.

It feels good though that things are pretty ordinary. It feels good that Bianca is able to go to school, have friends and just be like any other 5 year old. "Now" feels good. Of course "tomorrow" may very well be very different, but "now" is great - and if "tomorrow" turns out difficult or challenging - well then we'll just sing "the sun will come out tomorrow".


Doing fun things, mostly...

This weekend was great. On Friday evening Bianca had her very first school dance. They sold sausages, ice-creams, glow sticks, fake tattoos, had a nail painting bar and of course lots of great music. Terence and I helped out with selling some stuff. Bianca just had the best time ever and it was so cool watching her as she met up with some of the friends she's been making at school. So far removed from the day she sat on the slide waiting for a friend to come and sit next to her.

Here is Bianca getting her nails painted:

Having fun at the disco:

Terence and I worked at the Disco, here is Terence clipping somebody's money card at the BBQ:

On Saturday Terence and Bianca went to MOTAT again and they had a great time. I stayed home with Caitlyn as the venue isn't really suitable for her and this way Terence and Bianca could have more fun without being restricted to Caitlyn's routine.

Bianca tried out this old water pump:
At MOTAT they have these old buildings to show how people lived many many years ago, this is Bianca in the school room:

Pilot Bianca trying out the flight simulator:
On Sunday we were supposed to take Caitlyn to her swimming lesson, but unfortunately one of the children in her class was possibly exposed to chickenpox at their daycare centre, so until we know that the risk has passed or that there was no risk, we have to keep Caitlyn away. So we ended up just driving around and taking the kids playing at the park.

On Monday morning Bianca will go to school, but then I will have to get her earlier than usual as we have our monthly hospital visit. I expect it to be a little bit of a busy afternoon, so I'll have to take some things for Bianca to do. This is where I will really really miss Kate, the play specialist from Wellington. We could always count on her for loads of fun, laughter and entertainment. Bianca has a bit of a cough at the moment and I really hope that we are not in for another chest infection that require hospital stay. I really think 106 days as inpatient so far is more than our fair share... So fingers crossed!!!

Caitlyn is at such a great stage. The two girls have the best time ever and I cannot believe that she will be 18 months now in August. Time really flies. Well, in some ways time flies.

So here is a little clip to brighten your day - I promise you can't help smiling when you watch this (you will need sound).

In another it really doesn't. It feels as if we have been living in this rental house forever (when in fact it's been less than two months) and there is always something going wrong. If it is not a leak by the front door, then it is a toilet that gets blocked for just because and we are told that having a plunger is a handy thing to have (well we've never had to own a plunger ever), if it is not a leak in the kitchen because of the upstairs shower, then the middle shower door (which we don't ever use) doesn't fit anymore and of course then everything happens more than once. After the builder has been here, it leaked again by the front door. It doesn't leak every time it rains, but it does make me worry that we might end up with a damp, mouldy problem which would probably not be the best for Bianca and of course it leaks out of the light socket so BIG fire hazard. And the shower door doesn't fit again even though we don't use it and even though the builder did adjust it the last time. And lucky me, I had to plunge the toilet just the other day which for us was the second time in 3 weeks. So no word yet on when we can expect the builder to come and have a look at the leak again. Not sure how many of you have ever watched Fawlty Towers (here is a little clip which is quite hilarious) but I think a perfect name for this place is "Faulty Towers". It pretty much says it all!

On a very sad note - little Sullivan Farrar was only 15 months old and passed away just yesterday. He had Infant A.L.L. (Acute Lymphoblastic Leukemia). My thoughts and prayers go out to his family that they will find strength and comfort during this very difficult time.