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.