To witness something magical!

Okay so you remember when I recently posted some photos of our Swan Plants and our caterpillars? Today we had our very first butterfly. It was absolutely amazing.

It was so cool to watch, even though we unfortunately missed it just as it emerged from the chrysalis, it was totally amazing and magical to think that we witnessed this big change where you first have a tiny little caterpillar, we watched it grow and then finally it changed into a beautiful butterfly.

It so made me think of life - we all start life out as tiny little caterpillars and we go off on our journey and do what we need to do and then something makes us change and we become better, stronger and we spread our wings to start a new adventure or a new life. Sometimes we are quite comfortable in our situations and lives and then we are forced to undergo a change and whilst it may not initially seem like the best or nicest or most comfortable things as we sit there wrapped up in our chrysalis', perhaps even mourning the life we had before, sometimes all it requires is patience and before we know it, we emerge as beautiful butterflies ready for the next part of our journeys.

And so we watched first as our brand new butterfly clung to its empty chrysalis and patiently waiting for its wings to dry, then slowly opened and closed its wings and then when it felt ready it flew out the window. It flew around our garden a little bit before going off on its new journey. Getting swan plants and caterpillars, definitely the best thing we ever did and I think I became hooked!!!

And so I dedicate our first beautiful butterfly to little Kyah, a forever-almost-three-year-old who is a special butterfly princess! R.I.P. little one - we miss you lots!!!!


Doing well over here

Tonight Bianca was ice skating... in the bath. "How?" you may ask. Well it is simple really. You need:

1 x empty bath
1 x soap bottle
1 x 5-and-a-half-and-a-bit year old

Now stand in the bath and squirt some of of the soap into the bottom of the bath and start sliding slowly, voila! And that is what 5 year old's like to do in their spare time... (and please don't worry, Terence watched her closely!)

Anyway, things here are going great. I just find it hard to believe that we are almost at the end of January already. Yesterday Bianca and I went to school to pay her school fees (a total of $135 for the year) and we bought her stationery. Luckily they have these in stock at school so we went around and Bianca loved choosing the items she needed (and yes, where she had a choice she chose pink...). and off we went. We don't have to cover any of her writing books and so it was a pretty quick process of writing her name on everything. And now we wait for Sunday afternoon when they stick the class lists up at school and then we'll know who will be in Bianca's class and who the teacher will be.

Then on Monday we have to be at hospital for a blood test to see if they will increase chemo or not and then Tuesday school starts again and my little girl will be in Year 1.

Bianca's reading is really really good. Just yesterday she read her Little Red Riding Hood book to me and she read around 40 pages (each page has quite a lot of words) and apart from struggling with a few words here and there, she did really really good and managed words like "beautifully", "loveliest", "grandmother" and so on.

Other than that, we are just trotting along and enjoying the nice weather we have. Of course the flies are driving me mad and they make Caitlyn freak out every single time she spots them. So when it is time for winter I will be very happy to be rid of most of these stupid flies.

An award

Angie from Nanna Days kindly awarded me with the Proximade Award. Thank you so much Angie!

Proximidade is described as:
'This blog invests and believes in PROXIMITY - nearness in space, time and relationships. These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes for self-aggrandizement! Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated. Please give more attention to these writers!'

This blog award should be sent to your favorite eight bloggers and they, in turn should forward to eight of their favorites. You should include the text for Proximidade (above) in your announcement blog.

And now to choose my favourite eight bloggers:
It is hard choosing favourites, because I like so many different blogs, but these blogs always cheer me up!

Dear Mr/Mrs/Ms/Miss Anonymous

I'm not sure who you are as you did not leave your name and apart from knowing that you live in South Africa, have kept your backdoor unlocked for the past 20 years, an indication of where you are located based on my Statreader, and that your visit was one of more than 40,000 visits to date and that you are one of more than 100 readers who visit our blog, I don't know who you are, which is absolutely fine, being anonymous must be important to you and certainly that is why we have the option to post comments like this. I would like to thank you so much for stopping by and leaving a comment, I'm really glad that you find my blog informative.

I am really sorry that you feel offended about part of my entry, where I described my relief at coming home to find we accidentally left our sliding door wide open and to realise that we didn't have to worry.

I would like to assure you that in no way was my comment politically motivated, nowhere in that paragraph is there anything that is based on politics, I did not mention reasons as to why people might become involved in crime or the history of South Africa, I did not make mention of any of the political parties or the way the country is run or anything else other than making an observation that I am happy to be here and not still in South Africa because in all honesty I don't think we would have been able to accidentally leave a sliding door wide open without having things stolen. Certainly not from my personal experience.

I think it is common knowledge that South Africa does have issues with crime - one only has to look on News24 (which is a public website) and even here in New Zealand on our one travel website people are warned that there is a problem with crime in South Africa. I honestly did not think that it was a secret because most people I come across seem to be familiar with the situation.

I'm sorry that you felt I was running South Africa down, I did not say anything bad about South Africa as a place, I did not discourage anybody from visiting South Africa, except made an observation that I was pleased to be here and not there and that it was a relief when I realised we had left the sliding door wide open. Certainly I think there might very well be other countries in the world where people would not leave their doors open like that.

We have never hidden our reasons for moving to New Zealand and certainly whilst I don't make it a usual topic of conversation in this particular blog, I have always been honest about it whenever people asked or if I felt I needed to mention it. I appreciate that there are many people who do not share the same feelings as us, but certainly there are many people who feel the way we do, at the end of the day we all have to do what is best for us and for our children.

In a previous entry I even made mention of the fact that moving to New Zealand was in fact a blessing in disguise because we didn't know then that Bianca was going to get sick and so it is a blessing that she is able to receive her medical treatment here where we are not faced with the same huge expenses as other people are dealing with (if that was the case we would not have been able to afford Bianca's treatment and she would have died, simple as that!), in addition to this Bianca is receiving excellent education at a public school where she does not have more than around 21 kids in her class and her fees for the year came to $135 for the year (around R760 for the year if you convert it). From what I've seen it would have been much more expensive in South Africa and she would have likely had close to 35 or even 40 children in her class depending on which school she may have gone to.

You say that I chose not to handle your situation - I wasn't trying to handle any situations. I was merely making a comparison between my own personal past experience and my current experience. My comment was an observation and nothing more and it was based on my own feelings.

Wow, that is great that for the past 20 years you have left your backdoor unlocked. I am very happy for you and I think it is important that you feel safe where you live. You must count your blessings because everybody I know, and have spoken to to date, would tell me that they have not been as lucky as you where they could just leave their backdoor unlocked, certainly not without their security gates or if they lived outside a security complex (but maybe things have changed and it is becoming more common in South Africa for people to leave their doors unlocked). Certainly when we were still living there we most definitely could not have done this. One particular personal experience was that we had a burglary when we were all sleeping and had all our doors and windows closed and locked except one tiny little window which was open for the cat and that was how they gained access, and yes thankfully we did not wake up during that time. That was before getting married and having kids. My mom would probably remember this day quite clearly.

Please know I am very happy for you, that you are able to have that freedom, that is something we did not feel we had then, but certainly we have that now and we live our lives without burglar bars and security gates, high fences with electric fencing and we certainly count our blessings each and every day when we go for walks or go to the park or beach!

Why am I not allowed to draw comparisons between our past experience and our current experience? This is after all our blog, which is really no different to an online diary or journal and whilst most of it definitely is about Bianca and her treatment, surely I have the right to discuss other things too? Surely I should be able to inform our family and friends about things here that are important to us, after all that was really why this blog was created in the beginning - to keep our family and friends up to date. Yes, we chose to share it with others, but at the end of the day it is still based on our own personal experience be it past or present. It is still nothing more than a personal online diary. A place where I would want Bianca to come and read one day, to know why we made the decisions we made and to share with her the things she endured as a little girl. I'm not going to deny our past experiences and I'm not going to deny the factors that brought us to this point and surely we should be allowed to count our blessings.

I'm sorry if you don't agree, all I did was to make an innocent observation and in no way was it intended to offend anybody, however this is our blog and we reserve the right to write down our thoughts and ideas and opinions whether people agree with it or not.

I would like to wish you all the very best, and really I'm very happy for you that you are able to leave your door unlocked like that! Since moving to New Zealand that is what we found, that it isn't the end of the world when you forget to lock or even close your door, that's a great feeling isn't it?


What a crazy weekend!

Our weekend started with a trip to the hospital because of Bianca's hip pain and we ended our weekend (today was a public holiday in Auckland) with another trip to the hospital. The song that comes to mind is that children's song where you sing "one little monkey jumping on the bed (although technically it was a couch, and technically no jumping), one fell down and bumped his head, took him to the doctor, the doctor said, no more jumping on the bed" or something to that effect. Can't think quite straight as it is now past 11pm and time for bed.

Around 6:10pm Caitlyn was sitting on the 2 seater couch we have in our lounge area. I was sitting on the 1 seater next to her. I wasn't looking towards her, but I assume she was trying to climb over the side towards me or something (not quite sure), but next thing she tumbled head down to the ground and bumped it on the plastic rocking horse before landing on the ground. And she screamed! She screamed so much that she was breathing out, but not in and so next moment she went completely quiet and then passed out in Terence's arms for all of maybe 10 seconds. She woke up and screamed some more and then just became quite pale and quiet and so we decided we needed to go to North Shore hospital - the one closest to us.

The whole way there she was awake, but really quiet, pale and looking out the window. When we got to the hospital and announced our arrival at reception she started crying again and then from there perked up again. And so we waited, and waited, and waited with Wiggles on the TV to entertain the other little boy, with Caitlyn climbing on the chair, and down again, then on the cot, then down again, then to the books and back again, over and over and over.
And of course freaking out when the nurses just look in her direction. It was quite a drama trying to put the little gadget on her finger or foot to measure her heart rate and oxygen levels (they are not painful, but she freaked out when they tried to put it on her finger and of course then we had to hold her arm / foot down which freaked her out even more).

By 9:23pm we still haven't seen a doctor, still had no further feedback apart from when we checked an hour or two prior to that and the nurses informed us that Caitlyn would be next on the list and so Terence was going to tell them that we planned to leave and take Caitlyn to Starship and only then did we finally see the doctor on call (afterwards it turned out that this doctor clicked on Caitlyn's name around 9:06pm, but we didn't see her until Terence started letting them know that we thought it was better to leave and go somewhere else).

It was only then that she told us that they like to observe patients for 4 hours following a head injury (thanks for letting us know this upon arrival...). Of course Caitlyn started freaking out at the mere sight of this doctor and the doctor tried looking into her eyes, no such luck. And after a brief physical exam (probably to make sure we are not some of the horrible child-abusing parents out there) she decided that she was prepared to discharge us and that whilst we waited for the discharge note that we could let Caitlyn walk / run around and she would observe from a distance. Finally by 10pm we were able to leave and Caitlyn happily said "bye!" to the doctor as we walked towards the door.

It is going to be a long night because we are meant to wake her up a couple of times tonight to make sure there are no worries, she is able to wake up okay and so on, so I imagine we will all be pretty tired tomorrow.

I don't foresee any problems though because the distance that she fell was not that high and she did land on carpet and really since arrival at the hospital she was her old self apart from being way overtired and being in the strange environment. Yes it was a fall, but the doctor did indicate that the front part of the head is the strongest part and as such it is considered to be a minor head injury. So fingers crossed for no more "excitement"! I haven't had such a big fright in a very long time especially when Caitlyn passed out, that was a bit scary. But all seems well now again.

And on a final note, thank goodness we live in New Zealand and not South Africa. In our hurry to leave for the hospital we accidentally left our kitchen / dining room sliding door wide open with our washing on drying racks outside and returned 4 hours later without any worries.

Tears to start our weekend

Our weekend started with... going to hospital.

Bianca woke up in tears on Saturday morning complaining her hips were sore. So we phoned the hospital who advised us to bring us her in so a doctor could have a look. So off we went. Of course by the time we were settled in the one treatment room waiting for the doctor to finish his usual rounds and to come and see us, the pain wasn't so bad anymore. Eventually one of the doctors came by and had a look, watched Bianca walk up and down and basically indicated that there was no physical evidence that there was anything wrong that we had to worry about, but that it was likely the Vincristine (one of Bianca's chemo drug) that might have contributed to this. He requested a blood test just to check if there was any internal indication of anything to worry about and sent us home with the instruction that if Bianca suddenly developed a fever or more severe pain, we should take her straight back.

Thank goodness no further developments in the pain department and no fever and we got to spend a pretty relaxing weekend.

On Sunday we decided to go to Kiwi Valley which we understood is similar to Lindale Farm. Lindale Farm was absolutely one of our favourite places when we were still in Wellington and Bianca's been begging to go to a similar place again. So we found Kiwi Valley not too far from us. I have to say it wasn't exactly what we expected and so were quite disappointed as it was a bit expensive in comparison to Lindale Farm. It was a similar concept, but found their selection of animals the kids could feed quite small in comparison to what we were used to at Lindale Farm and there were some enclosures in the section where we could feed animals with big "do not feed" signs.

What was pretty cute though was that we could hold a few bunnies and baby guinea pigs even though neither kids wanted to actually hold the animals. Bianca was quite happy stroking them with them on my lap, but Caitlyn looked and then said "cared", "cared" - I guess for a little person a baby guinea pig or bunny might seem quite scary. For the money we paid I guess we expected way more and certainly I guess we expected it to be more like Lindale Farm. But anyway, we went, saw, but probably won't go very often.

Last night we quickly went to Parnell Pools and the kids had a great time. Of course I was hopeful we could just stay in the really warm side, but Caitlyn kept going to the cooler sides and then back at the warmer side. On the way back home Caitlyn was a bit fussy as it was just past her bedtime and she kept putting her foot (with shoe) into her mouth. When we said "Caitlyn no! Take your foot out of your mouth", Caitlyn got this mischievous smile and then said "tok-lit" (chocolate) "hmmm!"


Med-cine? Awe betta!

Caitlyn is really at a cute stage now (of course when she is not pushing the boundaries) and she copies most of what Bianca does, so we have to keep reminding Bianca that she needs to set a good example. If Bianca complains that she is cold, then Caitlyn immediately responds by "hugging" herself and saying "coooollld", when Bianca complains of a sore tummy then of course Caitlyn responds with a "saw tummy" and today Caitlyn walked around with a rubber glove on one hand (as she would have seen Terence doing many a night when it is time for Bianca's medicines) and she walked up to me saying "med-cine", I pretended to swallow the imaginary tablet she was holding out to me and she then said "awe betta" (if only real life was that simple...). I then asked her where Bianca's medicine was because she didn't offer any imaginary medicine to Bianca and she immediately pointed to the cupboard where we are keeping Bianca's medicines. Caitlyn is also a very polite little girl - "Caitlyn can I get a hug?" "no sanx", "what about a kiss?" "no sanx", "can I tickle your tummy?" "no sanx".

And so we reach the end of steroid week. And we're almost breathing a sigh of relief - we made it this week without the sadness and the grumpiness and whilst the constant requests for food could easily drive me mad (I mean Bianca was asking to have wild boar for lunch at 7 this morning), I would far rather have this than dealing with sadness. So all in all, this was a great week for us. I'm not sure what was different this month around, but we are definitely not complaining. So to celebrate Terence and Bianca went to the Parnell Pools this evening for a swim - Bianca had a great time!


Weird steroid cravings

Tonight Bianca was watching Asterix with Terence and of course Asterix eats wild boar - all the time. So Bianca sat there and then asked for some wild boar, to which we replied that we didn't have wild boar in the house, and Bianca asked "can we get some wild boar?". And we told her that we couldn't go out to find wild boar as it was late already but certainly this weekend we could go to the shop and get some pork which is the same as boar. "Does it taste the same?" And we assured her it would taste just like the wild boar they have in Asterix. She finally settled for some M&Ms and oats, even though she kept trying her luck hoping Terence would go out to find her some wild boar.

Let's face it you can't really reason with kids when they are on steroids.

Speaking of steroids and their side-effects, today was definitely a really good day. After last night I sort of thought we were heading towards the usual feeling sad and grumpy, but Bianca was in an excellent mood today. Yes it is fairly frustrating to have to deal with requests for food every 5 minutes or so, but I would far rather have that than dealing with crying and grumpiness.

Earlier today we did some baking. Usually this is a Bianca kind of activity, but today I thought I would include Caitlyn too. She was quite excited and kept trying to taste the sugar, taste the butter, taste the baking soda (which thankfully she hasn't quite mastered the art of opening a container as yet), and of course the mini M&Ms - not many of Caitlyn's allocation made it to her biscuits and instead took a detour to her mouth... She lost interest when she wanted a biscuit and I told her that they would have to be baked first and so she watched Winnie-the-Pooh while Bianca and I finished the biscuits. It was good fun, but Bianca doesn't seem much in the mood to actually eat the biscuits and so Terence will probably take most of it to work tomorrow.


The challenges of steroids

Today turned out a bit tiring and exhausting. Not because I was physically busy, but just as yesterday Bianca asked for food almost every 5 seconds. So you just get busy with something then Bianca would ask "when can I eat?", "I'm hungry", "is it lunch time yet?" to which I would comment, "but Bianca, you've just eaten something" and she would reply "but I'm still hungry".

Several times today I listed everything that I could think of in the pantry that she might possibly be interested in and then each time she suggested "let's go look".

At around 12pm Bianca and I went to see Hotel for Dogs. It was a really cute movie and Bianca loved it, although I'm sure the popcorn and maltesers she had at the movie helped her enjoy the movie even more... Unfortunately after we got home Bianca became a little bit on the sad and emotional side to the point where she became pretty clingy tonight wanting somebody to sit next to her the whole time and lie down with her when it was time for bed. And then tonight Bianca also complained of tummy ache. Something she always seems to do when she is on steroids. Of course Caitlyn copies everything Bianca does and so when Bianca complained her tummy was sore, Caitlyn immediately said "sore tummy" and pointed to her own tummy.

And this my friends, was Day 3 of our 5 days of steroids for this month. Of all the drugs Bianca gets, this one is the one that often makes her feel sad, miserable and certainly the one that plays havoc with her appetite. On the upside though she was still willing to eat most of her supper and a small piece of banana. The other drugs have their side-effects too, but this one can be particularly challenging.

Lucky only 2 more days of steroids left for this month...


Bianca taking a trip down memory lane...

Tonight after I got Caitlyn from daycare we came home to give her supper. Caitlyn is a really good eater, but she was a bit fussy and so Bianca had the following to share with her:

"Caitlyn, did you know when I was 3 or 4 years old I had 4 nose tubes and it's not nice. They put it through your nose, through your throat and into your tummy and then you don't have to eat. It eats for you"

(photo taken 23 August 2007)

Today was Day 2 of steroids for this month and every 2 minutes Bianca would say "I'm hungry", "when can I eat again", "can I have lunch?" and "I'm hungry" all over again. And whilst it is quite challenging to keep up with Bianca's appetite and cravings, I have to say that Bianca was in the best mood ever today. She's been energetic, excited, happy and I can certainly deal with the hunger anyday as long as she is in a happy mood. Only 3 more days for this month. I remain hopeful!!!

PS. she is still eating bananas and tried 5 raisins today. Can't say it is her favourite, but she was at least willing to try and we'll keep at it this week. I think we found a strategy that works!

And I forgot to add - Terence and I tried 5 raisins each too tonight (with Bianca as witness). I really don't like raisins, but a promise is a promise after all...



From this:

to this:

to this (somewhere between 10pm on the 18th Jan and 5:30am on the 19th Jan):

to this (somewhere between 6:30pm and 8pm on the 19th Jan):

to this:

All in a matter of just over 2 weeks.

We still have a few more caterpillars munching their way through the leaves on our Swan Plants, but for now Tiger is well on her way to becoming a beautiful butterfly. We can hardly wait... And for those of you who do not know, Bianca named her Tiger because of the stripes on her body and according to Bianca it is definitely a girl caterpillar.

To be continued...

Monthly clinic visit

So today ended up being a long day for Terence. In the end we decided that he would take Bianca to hospital for her monthly appointment as Caitlyn was busy napping and even though the family room at the hospital is an option, they are only open until 3:30pm and there would be no way we would have been done by then which would have meant trying to occupy a busy almost 2 year old in a busy area for the remainder of the time. Turned out to be a good decision that I stayed home with Caitlyn because Terence and Bianca finally left the hospital shortly after 6pm.

From what I understand everything went pretty well. Bianca got her usual vincristine and IVIG. She remains on 50% chemo dose as her platelets are a little lower than at the last visit and are sitting at 83. It is not too low and we have to wait for it to recover before increasing chemo again. So we'll have another clinic appointment in 2 weeks to check blood levels again.

Bianca started steroids this morning and so far so good, she still seems happy enough. 4 More days... Lucky it is still school holidays so we can keep things low-key this week and if need be then she'll be able to take long afternoon naps if need be.

And this afternoon Terence confirmed with Bianca's oncologist what her very last day of treatment will be and he confirmed (as we thought) that it will be 11 September 2009. So only another 7 months, 3 weeks and 2 days (not that we are counting...) and then we'll hopefully be able to put a total of 831 days of active treatment behind us. It is great to have that final date to work towards, but of course as always we'll just focus on now and continue taking each day as it comes.


Hey John Key, here's your solution...

I am absolutely shocked...

that we are already in the middle of January. Another 2 weeks and Bianca will be in Year 1 (for those of you not from New Zealand, the first term at school will be starting beginning February for most schools). I cannot believe how fast time flies.

This week was great. Bianca was in a really happy mood. Even her eating has been brilliant. Maybe the break in her chemo was all she needed to get back on track with her eating, or maybe the hours I spent trying to explain to Bianca why eating properly is important is finally making sense to her, or maybe she is starting to see that Caitlyn copies what she does and therefore eating properly is important, or maybe it is just a good week before we start steroids again and that once steroids start again her appetite will go back to how it has been before.

Either way, we had a great week and we appreciate it and it fills us with hope that once treatment finishes we will get back to normal.

This week she chose to try banana. We ended the week with her happily eating a piece of banana and with her agreeing that I can pack banana for school (click here for Bianca's comment on Bananas). That in itself is a breakthrough as far as I am concerned. Just that she was willing to try something she wouldn't normally eat. And on top of that, she's been eating most of what we've been eating for supper. She's had salmon this week (okay, she actually does like salmon which we call pink fish), she's even eaten the rice I dished up for her, she's eaten the pieces of chicken I put on her plate, she's eaten spaghetti bolognaise (even the mince part of it) and so on. And we didn't have to beg her and nag her like we normally have to if we try and get her to eat normal food.

But of course tomorrow we start steroids again and that might just change everything and shift it back to how it's been for us. Steroids are known to change the taste of food and it can give cravings or sometimes actually put Bianca off food completely, so we'll just have to wait and see how it will be this coming week.


Head over heals in love

Today Bianca lost her heart, she fell in love. Head over heels in love with this:

This afternoon we went to the one shopping center and there was a pet store, so we went in just to have a look. It is a really good pet store, well run, good quality and the animals are well cared for.

Bianca fell in love with a puppy (similar to the one in the picture which is a Pappilon puppy) the moment she saw it, she briefly looked at the rabbits, the mice and the rats, the frogs and turtles, but she kept coming back to this little puppy. She was lucky because one of the shop attendants took the puppy out for a short little bit and Bianca was able to touch it. It also licked her hand at one point and she giggled so much. She then told Terence "I just love this puppy". I think if we could take it home today it would surely be a dream come true for Bianca, but unfortunately we live in a rental home with a strict "no pets" policy and we assured her that when we're eventually able to buy our own home we could certainly look at getting a puppy.

But back to reality...

I don't know what they did at Camp Quality, but Bianca's eating has been so much better. She is more willing to eat what I offer (and eat it all) (although I know she is still selective) and because she saw first-hand that Caitlyn copies what she does I think I may have convinced her that it is important to set a good example with her eating. Last week we told Bianca we are happy she eats grapes and apples and raw carrots, but that that is not enough and that she is in charge of her body and has to teach her body to start liking new and different things. So we convinced her that she gets to choose a new fruit or vegetable and she needs to try it that whole week (and the rest of us would eat what she chooses) and so this week she chose banana and she's actually been trying it, the whole week and whilst she may not be overly fond of it, she's done so without complaint. I think she has chosen raisins for next week (which will be interesting because neither Terence nor I actually like raisins, but a promise is a promise...)

Bianca is in a great mood at the moment (which is good because next week is steroid week again). Bianca has a few bruises at the moment and I wonder if they are "playing" bruises or "low platelet" bruises, so I'm keeping an eye on her for the moment.

Bianca is so excited about school and she can hardly wait. She keeps asking me every single day when school is starting again and I keep saying "a few more weeks" and she keeps saying "aaaaw". I think if she could go tomorrow she would.


Playing in the snow

Today we celebrated this beautiful warm Summer's day by... visiting Snow Planet.

It is a huge indoor area with snow where people can ski and snowboard and have fun with toboggans. It is just around 15 minutes drive from where we live and at first we didn't tell Bianca what we planned. She was so curious and kept insisting we tell her what the "surprise" would be. She did figure it out when we had to turn by the sign that said "Snow Planet" with a right arrow which of course she read and then asked "are we going to Snow Planet?" She got so excited that she could hardly wait to get there.

We took most of the warm clothes she would need along with us, but rented the snow boots and snow pants (which of course we don't have because we don't get snow in winter here in Auckland). And in hindsight we should have arrived maybe 20 minutes earlier than planned because that's how long it took Terence and Bianca to get dressed into their snow gear.

Inside where the snow was, it was around minus 3 degrees celcius. For most of it I sat in the cafe area watching them as they were having fun with the toboggans (I did go out to the snow area for a little bit trying to take photos of them). At first Bianca went with Terence on the same toboggan, but then she insisted that she wanted to go by herself on her own toboggan.

Initially Terence thought that Bianca would only be interested for 20 minutes before she got too cold, but she lasted until 3pm and would have probably kept going if it wasn't for the fact that their time was up at 3pm.


Little bookworms

Things are still trotting along, Bianca seems more willing to actually try a few other things at meal times. Still selective and I guess it is just a matter of waiting until we are done with chemo. She's pretty happy today, just wishing that school would start and she keeps asking how much longer she has to be on holiday. We have our next clinic appointment on the 19th and it will be interesting to see what her blood levels are doing after she started chemo again.

This morning Bianca and I watched our little caterpillars. Well, Tiger is actually not that little anymore and you can actually see them growing bigger every day. I guess that's what happens when you keep munching on leaves. The smallest of our caterpillars was so small when we got it, it had no visible stripes like the other bigger ones. Bianca looked at her (it is a girl according to Bianca) and said "she earned her stripes".

Both our girls love to read. Well Caitlyn can't actually read yet, but she loves looking at the pictures in the various books we have and she's always held the book the right way round, not upside-down like a lot of babies do.

Bianca loves reading too and especially now that she is actually able to read these books all by herself. She often reads without pointing to the words and I guess since she's learned to read it is like a whole new world opened up for her. Last night was no different to any other for Bianca. After her chemo, it was bath-time, then it was story time and she chose a story that I had to read to her and then she read me a short story and then it was good night and lights out. After a while I went upstairs and heard something from Bianca's room. There she was sort of sitting forward covering something with her body (obviously trying to hide it) and she had switched on her little reading lamp (one of those tiny ones you can clip to a book or a desk or something):

Me: "Bianca what are you doing?"

Bianca: Grinning towards me.

Me: Noticing the book she was trying to hide, "you can't read now Bianca"

Bianca: "I can, I have a lamp"

Me: "Well, yes you can read with the lamp, but not now, it is too late, it is bed time"

And so she was a bit disappointed, but put the book back and switched off the little lamp and then she finally fell asleep. We promised her that she could go to bed a little bit earlier and then read to herself again tonight.


Back from camp

This afternoon Terence went to get Bianca at the Botanical Gardens which was the drop-off point after camp. Bianca was a little bit grumpy but we think it is just that she was tired and it seems she got a bit homesick since last night.

For most of it it sounds as if Bianca had a great time and they went to MOTAT, Rainbows End, they did swimming, they went in a helicopter and they even went in a hot air balloon, and so on. Bianca also spent some time playing with her friends Tui and Claudia, she met both of them at the previous camp. Last night they had their dress up party and Bianca dressed up as a pink alien.

Bianca drew some really cool pictures for us and she won a number of awards like the Fashion Runway Award for the best pink alien costume, the Supercalifragilistic award for completing the swimming pool obstacle course three times in a row, for eating and drinking as much as she could every day, for being a real cutie and having a boogie on the dance floor and the Super Girl Award for finally being able to go to her first ever summer camp.

As for eating, unfortunately as soon as we started chemo it seems Bianca's appetite went back to how it was before and she survived camp on Milo Cereal as she did not want to eat anything else. We are a bit disappointed as we were so hopeful that she would have tried some of the other things, but we are not really surprised as we sort of expected that to happen when we started her chemo again. Oh well, at least there is hope for September when chemo will hopefully finish.

We missed Bianca a lot, but we are so incredibly happy that she was able to attend and I want to say a big, big thank you to Janine Harvey, all the volunteers and then specifically Megan who was Bianca's companion. You made the week so special for Bianca!


Update from camp

Got a call from Janine Harvey this morning. Yesterday Bianca became very quiet when they went swimming so they kept an eye on her, but she slept really well and is back to being herself this morning.

Janine mentioned that Bianca really grew up since the last camp and I guess that is what the treatment does to these kids, it really makes them grow up fast and they certainly see a different aspect to life than most other kids their age and I also suppose having been to school for 2 terms now also contributed a little bit.

I must say that I am missing her quite a bit, but I am so happy she is able to be at camp.

Yesterday and this morning Caitlyn wasn't happy to be dropped off at daycare and she screamed quite a bit, but settled down pretty quickly after I left. I guess it is a combination of not being there for 2 weeks or so, dealing with Bianca being in hospital last week and now away at camp. She's probably feeling a bit stressed that things seem different to how it normally is. But I'm confident things will settle really soon again and life will take on its usual routine.

This year certainly is like a new start for us where we can start focusing again on the goals we've had to put aside the last 2 years.

I also feel really excited that in just a few months we will be done with treatment. Well, I certainly hope that would be the end of our treatment. We won't know whether the treatment worked until she's been off treatment for around 4 or 5 years, but we are very hopeful.

I remember when Bianca was diagnosed how it all felt like a prison sentence. All we could see was 2.5 long, long years ahead of us and suddenly it felt like we were locked in prison with no chance of an early release, there was no short-cut, there was no easy way out, we just had to get on with it. Then we reached last year and we started talking of "next year". Suddenly it felt closer, "next year" had a better ring to it than "two years from now" and here we are at the start of another year and we can actually say "this year" and not just this year, but "in a few months, before the end of the year".

I realise that lots can certainly happen between now and then, but it fills one with hope when your goal is so close you can almost touch it.


Urgent prayer request

Recently I found a new Facebook group and since then made two wonderful new friends - Suzanne and Wouter Grove.

Their little boy also named Wouter was diagnosed with cancer on the 24th of December, Christmas as well as his mom's birthday was on the 25th of December and what they first thought was neuroblastoma turned out to be rhabdomyosarcoma (he had a large tumour behind his liver). Since then they have been doing a number of tests and treatment was supposed to start Monday 5 January 2009, but paperwork through the holiday period was not coming through as it should and so they anxiously sit and wait and the new plan is that treatment will start on Tuesday the 6th. They have just completed a scan of the little boy's heart to make sure it works well. Bianca had this as well and it is a fairly routine procedure and gives them a baseline to work with before administering certain chemo drugs (or so I understand), unfortunately this revealed a tumour now in his heart as well which was not there before.

So this is a scary new development.

Please could you visit the Facebook site and keep them in your prayers and thoughts. (Click here to visit their group).


And Bianca is...

at camp. That's right. Right this very minute she is at Camp Quality. Terence has gone to drop her off this afternoon.

We went to clinic this morning for a blood test and to discuss Bianca's blood results and the possible start of chemo again. So we got there, got the blood test done and then we had to wait around an hour, so we took Caitlyn to the Family Playroom at the hospital. Last week the play specialist told me about this as a possible solution for Caitlyn when we have to go to clinic. It is pretty much drop in, let them know where we are at the hospital and then they are available from 8:30am to 12pm and again 1pm to 3:30pm. So today she just went for a really short little while. At first she cried a bit when she realised we were going to leave her, but I believe she settled really quickly and found her way around all the toys.

We saw Doctor Cole today one of the paediatric oncologists and I must say she was really nice. And guess what? Bianca's counts are all recovered!!! Thank you so much for all the prayers and positive thoughts, it really made the world of difference.

So platelets are up from 37 to 100 and neutrophils are up from 0.90 to 1.75 and haemoglobin is also at a pretty good level. So tonight Bianca starts chemo again at 50% and we'll review it again in 2 weeks when we are due at the hospital for our monthly appointment and if counts are still good then we will probably go up to 100% dose as Bianca typically copes well with her chemo increases. And best of all she was given permission to join in with camp. That really made Bianca's day and she checked 3 times just to make sure.

After our appointment we went to get Caitlyn who was happily playing. They have 2 swan plants with some chrysalisses (is that the right spelling?) and caterpillars and it was so cool! I'm determined to get some for the kids so now I just need to find out how and where and when. If you have any info on this, please let me know. I will bring Caitlyn again in 2 weeks' time when we are due for our monthly appointment and see how it goes.

And then I had to scramble to get everything packed and ready. I can't remember when last I had to work so fast with such little time and I sincerely hope we did not forget anything important. I did not expect her counts to look so good and certainly I did not expect to get permission for Bianca to join in with camp and so we were not as prepared as I should have been. But we are not complaining. I'm also pretty impressed with myself because we had to sort out some kind of alien / space dress-up for Bianca for the theme for this camp and so we quickly stopped at the $2 shop and made quite an impressive looking alien costume with a pink child-sized rain poncho, some red gloves that go all the way up her arms (and an extra pair to stick to the poncho), she has a pink sweat band that goes around her head and I drew a big eye on it for a third eye and she has this funny alice band with these funny things that could resemble ears. Bianca was really impressed with her outfit which we put together at the last minute and of course her being an alien, does mean that we can be pretty creative with her outfit.

Today was a fabulous, wonderful day and we feel so thankful for today. Thank you so much to Doctor Cole and Janine Harvey and all the Camp Quality Volunteers for making this day and week so special for Bianca, thank you so much!!!


There is hope...

For the past 3 days or so Bianca's been eating really well. It has been the first time in I-can't-even-remember that all 4 of us have actually eaten the exact same meal at the exact same time at the exact same table. And Bianca's been eating what I gave her, I didn't even have to keep nagging and begging just to give up after an hour. It has been amazing!

Now to most people this might not seem like a very big thing, but for so long now Bianca's appetite has just been really tricky and most of the time so selective that I have to typically make more than one kind of meal at a time. A long time ago we did meet with the dietician and it was sort of either we keep at it and push her to eat what we eat and if she chooses not to eat, well then so be it, or we could punish her for not eating, or we could just go with the flow and fit in with what she will eat and have our healthy ProNutro as a backup. So along with the dietician we decided to become flexible and fit in with her selective appetite and on particularly challenging days just give her pronutro (which does have a good range of vitamins, minerals and even iron and protein). We certainly did not want her to start hating food all because the chemo and steroids messed up her appetite.

So I'm guessing this is either a late onset of steroid-induced appetite or just that she has not been on oral chemo since 22 December. I'm almost feeling that this is as a result of no oral chemo which means that there certainly is hope when we finish our treatment in September.

Tomorrow morning we get back to reality as Terence is due back at work after the Christmas break and Bianca and I will be due at the hospital tomorrow morning for another blood test and meeting with the doctor and that means setting the alarm and waking up early. Tomorrow I will also have Caitlyn with me and I will have to see how that goes. I don't usually take her with me to these clinic appointments, but unfortunately this appointment is outside the time that Caitlyn would go to daycare every week.

We'll update again after our clinic appointment.


Quiet days at home

Today was sort of weird now that we suddenly have to keep Bianca away from other people again while we wait for her counts to recover. They are not as low as they were, I mean you can't really get lower than zero neutrophils (as far as I know), but they are not above 1 yet and that is technically still on the low side. So we stayed home, which felt weird as we always try and do stuff over weekends and for a while now we've had more of a "normal". Of course we could have probably taken her to the park or the beach, but with the way the weather is now, I am sure there would be just so many people there at the same time, which would increase the risk and if we can avoid another hospital admission at the moment, then that would be good. Especially since Terence is due back at work next week after this short little break now between Christmas and New Years, so it would be more challenging if we had another hospital stay.

We are quite keen to get to Monday when we will do another blood test, and with any luck Bianca's counts would have recovered. I am quite anxious to start oral chemo again seeing as Bianca's now been off oral chemo since 22 December 08. So hopefully Monday will be the day.

Last night was a fairly rough night for me as Caitlyn was pretty restless from midnight until around 5:30 when she decided she didn't want to sleep anymore. Caitlyn finally fell asleep again on the couch around 7:30 and then Terence got up to look after the girls and I went back to catch up on sleep. Tonight is his turn.

In some respects it doesn't feel real to me yet that the new year has arrived. It certainly does not feel any different just yet. I can't believe that school is starting again in around 4 weeks' time, then my little girl will officially be Year 1. And February means only 7 months left of treatment. It also means Caitlyn will turn 2. Just the other day I was watching little video clips of when Bianca turned 2 and wow, the difference is so huge to what she was like then and what she is like now!

So I expect we'll just have another quiet day at home tomorrow. But sometimes "quiet" can also be good!


We are home!!!

Bianca's levels are still on the low side and technically she's still considered on the neutropenic side so this weekend we won't be going to where there are crowds of other people. Monday we have another blood test and hopefully then her counts will be fully recovered and we can start oral chemo again.

But we're home today and that's all that counts.

I'm really tired tonight because even though the hospital stay really wasn't bad at all, we still have to deal with machines beeping at night which did wake me up a couple of times last night. But yes, certainly the stay was pretty good except two pretty bad incidents which left me fairly upset and which I will most definitely be taking further.

I hope you all had a really good start to 2009 and that this year will be an exciting and wonderful year for you all.


Daddy Daughter day out

It was such a lovely day this afternoon that I took Caitlyn to the beach at Brown's Bay. This is an old favourite of ours as it has both a play area for kiddies that looks kinda like a pirate ship and a nice expanse of sand with very gentle waves at the water's edge. There is usually lots of parking available, but today everyone else decided it was time to go to the beach too. I did manage to grab a parking as someone was leaving.

Caitlyn of course ran to the beach because we were so far from the park she couldn't see it. There was a huge area between the lifeguard flags and I shepherded her towards the middle as much as I could before dropping out bag out on the beach and hitting the water with her. The water was surprisingly warm, and I wished Lea and Bianca were there too so I could take Bianca out a bit deeper. Caitlyn of course would run to and fro from the sand to the water throwing shells and rocks into the waves. They were gentle enough not to knock her over - I did get her to sit down briefly but she had too much energy in her to keep still for long.

Caitlyn remembered this beach has a play area, and after half an hour or so she left the water shouting "Park! Park!". Pity, as the sea is much more fun for me. I didn't have footwear with me, and the park matting had been baking in the sun all day. so I had to hop from shadow to shadow trying to keep up with Caitlyn. The coolest part (temperature wise) of course was inside the pirate ship, but since it's designed for kiddies it's a bit low, and I bumped my head twice on the rafters. Sore head or sore feet? Tough choice.

Caitlyn couldn't throw her usual wobblies when it was time to leave as the ground was too hot for her to fling herself onto more than once. Also it was past her usual supper time, which I think also encouraged her to go without too much protest.

Pity we couldn't share this with Bianca and Lea, but there will be lots of time when Bianca is out of hospital.

Playing with glitter is good fun, right?

Mistake #1 - thinking that buying glitter would be a good idea.

Mistake #2 - laughing at Bianca's antics as she was sticking her hands and feet in it and pouring it out on the paper, making a big mess.

Result - an glittery mess to clean up with glitter on the floor, glitter on the bed, glitter in Bianca's hair, glitter on her clothes, glitter on her hands and on her feet...

Oh well, she had fun and that is all that matters and lucky it wasn't at home.

Yes, we are still here

And I just want to let you all know that whilst some may expect we are all strung out and stressed about being in hospital, we really are not. It is tiring, it would be really nice to all be at home, it does mean Terence and I have to keep in touch through Facebook, but...

We've learned a long long time ago that we just need to take one step at a time and one day at a time and so it doesn't bother us too much when we need to be in hospital. Spending more than 106 days in hospital as inpatient (since diagnosis) has certainly prepared us for this admission and whilst we do hope we get discharged soon, it isn't that bad being here.

We find the overall service at Starship very very good. We are not on the oncology ward because we needed an isolation room which they don't have available on the oncology ward, so despite the fact that these staff don't necessarily work with oncology kids and certainly have never had Bianca on this ward, ever, they really are doing a wonderful job.

Yes, the room is small, but it has its own bathroom with a shower and toilet (and that is always a plus in our books - we were once stuck in an isolation room probably for a good 2 or 3 weeks with no bathroom fascilities and Bianca could not leave the room and so we had to keep asking for a commode for her) and a bed for the parents, the ward kitchen is just opposite our room and they've even been giving us (the parents) some options for breakfast as well as a meal at dinner time. We are not used to that and certainly at Wellington they only supply to the children and not the parents / caregivers.

I can also take a short walk to the main part of the Auckland hospital where there is a Muffin Break and a Subway and so on and so for us, many more options than we've ever had at Wellington Hospital. So really, the stay has been fine.

Yes we do miss Kate (the play specialist at Wellington) who would make Bianca giggle with her silly antics, but the play specialist on this ward also seems really nice, although not as silly as Kate and she's been popping her head in every so often asking if Bianca needs something. To top it all I also believe they have a childcare centre here at the hospital where, if I had Caitlyn with me, I could leave her for a little bit if we were here for clinic or back inpatient. So if for some reason we are still in on Monday, then I might just consider it.

So we really don't mind being here and so far it has been okay (apart from an unpleasant experience I had with the one doctor today, but I'm not going to go into detail on the blog).

Last night Bianca and I waited for the new year. Bianca came to sit on my bed for a little bit and lucky there is sufficient space to move the IV pole around to my side of the room. We had a nice time looking out the window and the beautifully lit buildings and finally we managed to see some fireworks. Bianca really loved it. It didn't go on for too long and so then it was time for bed.

Yesterday Bianca only went to make poos twice and today twice so far (but it is not runny anymore, so much, much better!). Last night Bianca's temperature was normal the whole night and for most of today, but unfortunately is now back to 37.6 (and I understand that if she stays fever-free for 24 hours we might be lucky and be discharged, but until then we'll stay in hospital). Neutrophils have jumped up from 0.02 to 0.33 and whilst this is still neutropenic, it is definitely better than it was and a good sign. So a good start to 2009 and the first day of 2009 started bright and beautiful and sunny.

This morning Terence came for a visit with Caitlyn and at first Caitlyn came into the room saying "Bakie!" She was really happy to see Bianca, but she got bored fairly quickly and then knocked on the door saying "walk". So after we all ate lunch I took Caitlyn downstairs to the play area and she loved pressing the buttons for the lift and running around, going on the slide and so on. And then it was time for home for Terence and Caitlyn.

Tomorrow it is my turn at home and Terence's turn at Hotel Starship.