New home

Just so you know I started a new blog for us. You can visit us here. See you soon and make sure you say hi! :-)

This is it!

Today we reached an incredible milestone. Finally! I honestly had my doubts the port removal will happen today and right up to the point where they finally called us for theatre at around 4pm, I expected them to come and tell us that we've been bumped again. But apart from a very long day, everything went according to plan. Even now it feels unreal that it has finally happened.

Bianca was so excited to finally get to the point where her port will come out. Not that she remembers a time without it, but it means that soon she'll be able to get her ears pierced as she's been asking for a little while now.

The day was incredibly long. I have forgotten how very long theatre days can be and when we were finally called around 4pm Bianca was just so happy and could hardly wait. They didn't give her anaesthetic through her port today, but instead Bianca opted to have the mask with the gas option. It took around 1 hour and in that time Terence and Caitlyn arrived and then when Bianca came out and woke up we all went back up to the ward where we had to wait for 2 hours afterwards. Initially Bianca complained of a bit of a headache, but soon after she got some pamol she felt much better and her option to celebrate was to go out for supper.

We asked to keep Bianca's port and it was so cool to actually see what it looks like. It is in a little plastic container and we will put this in Bianca's memory box so she can show her kids one day.

When we are able to remove the dressing next week, then all that will remain will be a scar that over time will fade. But that will always be a reminder of just how amazing and how brave Bianca is and was. Bianca, you make us so incredibly proud!

Here are some photos of our day:

Waiting to be called to theatre....


One last glimpse at her constant companion - the port she received when she was diagnosed beginning June 2007:


All excited to finally be called for theatre, forms signed and medical notes all ready for the theatre staff...

Instead of getting the "sleepy milk" through her port, Bianca opted for the gas option today. Here she has just fallen asleep.


Back on the ward and choosing beads for the port removal and surgery today.



And Bianca's port. The round part is what was sitting just under the skin and where they used to access it to be able to draw blood when needed, give transfusions, IV fluids / medication and chemo. It then has a plastic tube which were fed through to the arteries (I think).

On the way out, we noticed that Radio Lollipop was open. Bianca got to say hi on live radio and choose a song.


And then we went out for a celebration dinner to Lone Star. And finishing it off with pavlova (and a candle)...


This journey has been incredibly long, at times exhausting, and overwhelming at the same time. But we have learned so much. We have been incredibly blessed throughout. We will never know why we were chosen to walk this road, but hopefully we were able to make a difference to somebody somewhere to help them know that they are not alone, that it is possible to live life despite living with cancer and that whilst we can't choose what happens in life, we can choose how we handle it.

Thank you to every single one of you for walking this journey with us.

And so as we reach this point, it is also time to say goodbye. This blog was started after Bianca was diagnosed to share with family and friends and to let them know what was happening. And so it is fitting that with Bianca's port removal, it is time to close this chapter.

But watch the space. I am hoping to start a new blog soon! And I hope to see you there...

And so it seems...

That tomorrow will be the day. On Tuesday we had our monthly hospital appointment, got there all ready with Emla on Bianca's port area and they then told us they won't be flushing her port as she's scheduled for theatre on Thursday (in 2 days time). Wow! Unreal!

Today I fully expected to get a call saying "sorry she's been bumped and we don't know when next", but the only call that came was to let us know she's on the afternoon theatre list and what time we would need to be there and what time Bianca should stop eating breakfast. It's going to be a long day. We'll have to stay 2 hours after Bianca is done with threatre before we can come home and no showering or anything that will cause the port area to get wet.

Bianca is so excited, she's been speaking about tomorrow since Tuesday. So fingers crossed all will go well and there won't be any last-minute bumping.

Feeling frustrated

Today I just feel frustrated. I just really want to get to the point now where Bianca's port can come out.

We were all set to get Bianca's port finally taken out tomorrow. On Monday (as some of you might know) we had to visit the GP. Bianca has been complaining of a sore neck / throat since Friday and Monday we could feel the swollen lymph nodes by her neck. For a moment there we thought maybe she somehow picked up mumps, but her doctor told us when we called that she has retained immunity against mumps and the only immunisation she'll need to get would be for Hepatitis. (Yeah!). However, he wanted us to take her to the GP because she might have some kind of infection. So that's what we did and Bianca had to get a range of blood tests done. Yesterday got a call from the GP and they can't see anything specific in the blood test results other than that she is fighting an infection and can we please bring her back for another checkup tomorrow (which was today really).

Then today I got a call from Bianca's oncologist and he pretty much told us what the GP told us and mentioned that he is happy with her "healthy response" to the infection and that at the moment they are not concerned about any leukemia cells hiding somewhere (so that is a huge relief to know that). But he also said that we'll now have to wait for this infection to be fully cleared before they will take her port out (sigh!) and that unfortunately he read wrong the last time and she pretty much will need to get ALL her baby immunisations all over again (double sigh!).

So now we are scheduled for another blood test next Tuesday to see if the antibiotics are doing their job and if further tests will tell us a bit more about what we might be dealing with.

And we are waiting to see when the next theatre appointment possibly could be.

So today I just feel frustrated. I really just want to move on now. But we'll just have to wait and see as usual I guess and not put our hopes up too much until it actually happens...

Sigh!

And it seems tomorrow will not be the day. We've been bumped - again! To the 1st of April. Sigh. It is not surprising though, just disappointing. But either way we are going in for a port flush tomorrow as it's been more than a month now. Sigh. Fingers crossed that this time round they won't bump us again.

Reaching THE point

If all goes well Thursday will be THE day. If all goes well on Thursday Bianca will get her port removed. Bianca knows it is going to happen, but since she doesn't remember a time without her port, she doesn't really know what to expect. But it feels wonderful to reach this milestone. 6 months off treatment - wow!

In the beginning, reaching long term maintenance felt so far away, then we reached that and the end of treatment felt like a far and distant point and now we are here.

Bianca wants to get her ears pierced and actually wanted it done the other day already. We've always said we will let our kids decide when they are ready to get their ears pierced, but of course for Bianca, she can't really go into theatre with newly pierced ears, so we had to tell her that she would have to wait till after. So not quite sure when after - I still have to find a place that is good with kids. Any ideas will be greatly appreciated.

Late update - I'm sorry!

I feel incredibly guilty for not blogging sooner. I should have updated after Bianca's last hospital visit which was the 22nd of February. But simply, time ran away with me. All Bianca's counts are looking good. White cells were a bit on the high side, but that is in all likelihood just some kind of mild infection lurking around there somewhere. The rest of the results all good, so no worries there. They took an extra sample to test Bianca's immunity against measles, chickenpox and so on and so by our next visit we'll know if Bianca will need to get her baby immunisations again or not. I'm really hoping she would have retained most if not all immunity, but the doctor says that is very unlikely. Uggh. I used to hate taking Bianca for her baby immunisations and Terence often ended up having to do it and this time will be way worse because Bianca is older. Yes, yes, I know we've been through the whole cancer thing and chemo and all sorts of things, but whenever there is some kind of needle going into an arm or leg - I hate that because Bianca hates it.

We are also getting pretty close to getting Bianca's port out. I'm sure it will feel as if Bianca is missing something. Her port has been part of her for so long now and she really can't remember a life without it. To her it is part of her. We've asked if they could please make sure we get it back because Bianca will want to see what it looked like (and us too).

The only thing that really struck me on the 22nd though is how extremely tired Bianca was after the visit. She became really quiet in the car on the way back home and literally 5 minutes after getting home Bianca was fast asleep. Unfortunately we are not quite there yet with Bianca's eating. Hard to know if it is as a result of the chemo, or if Bianca might be turing into one of those vegetarians who prefer chicken rather than red meat or if she is just being 6 and fussy. And she lost 1kg since her visit in January. Doctor is not all that worried at the moment because she is within her range, and I guess it is just a matter of putting my foot down a bit more. Along with that Bianca doesn't always sleep all that well. It suddenly occured to me that maybe this whole new fast-paced normal lifestyle might actually be a bit much for Bianca. Sure she copes emotionally, but physically, perhaps not so well. Since I started work we would wake up early, rush out the door, drop Bianca off at before-school care, then school, then after-school care and finally home by 6:30pm. And I guess that is the challenge, finding a normal without putting too much pressure on Bianca. I guess it is easy to sometimes forget that it can take a while to fully recover.

But it is also funny how things work out because it just so happen that I had to resign from my work (last permanent full time work day 29 March and then contracting part-time for the month of April) because Terence's job situation is busy changing and in all likelihood will mean moving back to Wellington. Which means I will stay at home again and this should hopefully have a positive effect on Bianca's energy levels.

And that is our news in a nut-shell...

A special birthday celebration

Oh my goodness! It has been a long time since I updated here. And yes I know, same old story - we've been so very busy that time really just flies out the window, but it's true and I guess in some respects we don't have much to report on, which is a good thing because it means life is happening without any major drama.

But anyway, today I have to share something special - we celebrated Caitlyn's 3rd birthday today. Technically it is not yet her birthday (only tomorrow), but we had her party today. We decided to do presents today too as tomorrow (Monday) will be so rushed she won't have much time to open presents and play with them, so today it was.

This morning Caitlyn woke up to wrapped presents. She must have thought it was Christmas. That's probably because we used the left-over Christmas wrapping paper and since kids really don't care what the paper looks like, but rather what is inside and that it ends up being ripped up anyway, we figured this was a good way to get rid of some of the wrapping paper we have lying around.


We were so excited, a few weeks ago we ordered a little wooden stove and microwave for Caitlyn and we've been hiding it in the garage. She's at the perfect age where she loves to pretend to do things and she loves to pretend to cook and bake. We always have to check the inside of our oven before we switch it on to see what she pretended to bake for us.


Caitlyn happily declared "look I'm cooking!"


After she opened all her presents, Caitlyn built the special puzzle Bianca chose for her probably around 3 times. The first time we helped her, the rest of the time, she pretty much did it all by herself.


"Look I did it!"


And let's face it, you can't have a birthday unless you whack your dad over the head with balloons:


Then it was time to get all dressed up and go to Lollipops Playland - an indoor play venue with lots of fun climinbing structures, slides, a merry-go-round and so on. They also have party rooms and since we really don't have the space at home at the moment, we decided this would be the best option.

Basically you get there, the kids get to play, then you have your party room for a set time and then the kids can continue playing afterwards. Here is Caitlyn on the merry-go-round and even though in photography terms this photo is terrible quality, I simply love it. It shows how excited and happy Caitlyn felt today.


Here is my attempted Barbie cake. That was what Caitlyn wanted. The cake is pretty wonky and she I can almost hear her asking "does my bum look fat in this?" and really looking at it her bum looks huge (which I know it isn't because I stuck her inside the cake), but I guess real women all have some or the other flaw and therefore my Barbie representation is a more realistic representation (there you go, that's my philisphical moment of the day) :-)


Then it was time for food, some more play and finally home time.


Afterwards we went to Waiwera, a thermal resort not too far from us. It was for a tweet-up or something (meeting up with a bunch of Terence's fellow tweeters or tweets or twitterers or whatever the term may be). It was a wonderfully relaxing afternoon. And the kids had a great time trying out some of the different pools. Bianca's favourite was by far the water slides and Caitlyn loved the pool that was just deep enough for her with a frog water slide. Of course if I had my way I would have spent the afternoon in the much warmer pools, but being a parent you end up enjoying the areas your kids enjoy too :-).



Caitlyn simply had a great time today. She's not quite used to saying "I'm free (three)" just yet and insists "I'm two ears (years) old" (sigh, if only it was that easy to prevent the aging process my little girl :o) ).

Start of Year 2 at school and a little tradition

And so today Bianca started Year 2 at school. She was so excited, but unfortunately not feeling very well at the moment. I thought that perhaps the school would call me to come and get her, but she ended up coping well the whole day, so I was pleased. The past few days Bianca complained of a tummy ache and so last night, we took her through to Starship to get her checked out. You can read more about Bianca's tummy ache here.

But in summary this is how Bianca is feeling at the moment:

Anyway, so today was the big day. Bianca was excited to start (although even more excited to start the new school year with her new school bag):

And being the proud mum that I am, I did go crazy with the photos, but hey, one day when Bianca is all grown up and old she'll thank me for it :-)

Just outside Bianca's class:

Bianca started a little tradition when she started school in July 2008 as a new entrant / Year zero and on the first day of school she always takes an apple for her teacher. It has to be a red apple (although not like the poisoned apple in Snow White, but more like the apple Pinnochio took to school with him):

Some shots of Bianca's class:

The computer corner:

The yellow board is the free choice board where kids can choose an activity before school starts if they don't want to play outside at that time. They can also choose from this board when they have completed an activity before the time is up. The kids also learn WITS in Bianca's school. Basically this is a bully strategy to help kids resolve conflict - you can Walk away, Ignore, Tell somebody, Stand up for yourself.

Bianca's place to hang her school bag and hat.

Bianca sorted all her new books and folders into the baskets behind her. These books stay in class.

Bianca loves her new pencil case (of course mostly because it is pink with love hearts):

Sitting at her new table:


And finally joining her friends for a bit of free choice play before school started:


I can't believe Bianca is in Year 2 already. Suddenly I feel so old :-)

A very important date

Today was another monthly hospital visit. I still can't believe how quick it is these days, no more sitting for hours on end waiting for IVIGs to finish running, it is pretty much in and out (okay we still wait 1 hour for bloods). All the results look great - platelets, haemoglobin, neutrophils, lymphocytes. It is very reassuring.

Next month it seems we'll do THE blood test to see what Bianca retained immunity for and whether she'll need to get some (or all ) of her baby immunisastions again. I hope it won't be all, but if we have to then we have to. Doctor even mentioned that if next month's test reveal Bianca did not retain immunity to chickenpox we could either expose her to it and get it over and done with or get the vaccine - I think we'll opt for the vaccine if we need to. And then we'll also get Caitlyn done. To get to this point where it won't matter if she got chicken pox - that is such a huge huge step.

And then (drum roll please) Bianca's port removal is scheduled for 18 March 2010 (it will be a looooong day with clinic in the morning and then theatre in the afternoon). We are hoping they won't bump us (seeing as it is an elective surgery and not a critical surgery), and hopefully all will go according to plan.

But wow, how very unreal this feels. How very unreal it feels to get to this point. But we are very very grateful to get to this point!

Just a bit of an update

I find nowadays that I struggle to write in this blog. I don't know why, perhaps because there aren't too many exciting things happening and it all feels sort of average / ordinary. I mean "going to work, coming home, tidying, cooking, putting kids to bed" aren't exactly newsworthy and simply don't make for exciting and entertaining subjects. But that's pretty much our lives at the moment.

This year is already going faster than I was hoping. It seems the days and weeks just go by so fast and here we are not too far from the end of January and soon on the 3rd of Feb Bianca will start Year 2. I can't believe how fast she's growing up. The very thought of her going to year 2 fills me with hope and excitement and amazement. To know that she is well enough to go to school, well enough after the end of her treatment, school isn't really something we'll ever take for granted because there was a time (when she turned 5) that her doctor wasn't sure if she would be well enough for school. And look at her now, she's already completed a year and a half at school. We'll forever be grateful that she's had the chance, that cancer didn't take that away from her. I look at her hair and it is growing so well now. Not long and we'll be able to make proper little ponytails. Her fringe is hanging right down to her eyes now, but I won't cut it we'll just let it all grow out. At the moment Bianca's eating is also pretty good. She's not quite as fussy as before. I mean she's still a little fussy, but she's more willing to eat faster, we have to "nag" less, she's more willing to eat what we eat. And that is pretty good.

Caitlyn can't wait for her birthday now in February when she'll turn 3. She's been talking about her party for weeks now and finally yesterday I managed to book a venue. It was quite a frustrating process because we didn't have a whole lot of choice of indoor venues and our house is simply way too small. An outdoor venue? Well if it rains or it gets too hot then that is really not very practical for a toddler party, so it has to be an indoor party.

Last year I wrote a little story about her leukemia and what happens with photos that Bianca got to read to her class when she showed her beads to them. (Read here). And finally I got round to finding out about getting it printed to look a bit more like a real booklet rather than A4 sheets that I stuck in a folder and it seems I will be able to get this done really quickly. This is pretty cool and I'm very excited. So I'll have one for Bianca to keep and then I'll probably make one to share with CCF and our favourite play specialist in the whole world (Kate from Wellington) in the hope that they could use it as a resource for other kids who are just diagnosed with leukemia. So now I need to get cracking and find all the photos I used, make sure it reads right, design a cover and then we should be ready. So cool!

And that people is pretty much our news in a nutshell at the moment!

Friendship Bracelet

Today Bianca came back from camp. It sounds like she had a great time (so much so she was crying tonight because she still wanted to be at camp). And Caitlyn was sooooo excited to see her big sister when we went to get Caitlyn from daycare. Bianca was wearing this cool bracelet. The kids and the companions made friendship bracelets for and with each other. And I guess that's what Camp Quality is all about - making friends. She'll have to take it off when school starts, but in the meantime, she's vowed to wear it all the time :-).

How to make a Super Hero

Tomorrow Bianca will be attending Camp Quality for a week. She is so very excited and can hardly wait. This time round their theme will be Super Heroes and the idea is that you make an outfit and then one evening in the week they will all be dressing up. I've been trying to convince Bianca to be a Super Hero Fairy, but she wasn't interested in that, she wanted to be Super Girl. So off I went to the shop in search of things to make a Super Girl outfit.

I've been meaning to work on the outfit the whole week, but as it usually goes - if it wasn't for the last minute, things simply won't get done and so that's what I had to do after work tonight - make a Super Hero costume (and pack Bianca's bag for camp), but I managed and I'm pretty pleased with the result. Bianca is pretty pleased too.

So here goes, how to make a Super Hero (Lea Style).

First you get all the ingredients together:

A red t-shirt and blue shorts that you found on sale.
Red soccer socks in size 9 - 13 (small size).
A wig from the $2 shop.
A bluish scarf-kind of thing from the $2 shop.
Some shiny blue foil crepe paper from the $2 shop.

Now start sewing (just with blanket stitch) the blue crepe paper onto the shorts. This way it makes it look like a skirt, is easy to put on and if it tears she won't be showing her underwear to the world.

Sew the scarf to the shirt as well as a shiny blue "S" for Super Girl.

Include a very excited 6 year old:

And voila - you have a Super Hero:

Super Heroes are strong:

And then practicing to sit with her shiny blue skirt:

Life, just life!

Well what can I say? I am shocked that we are already nearly in the middle of January, oh my word! Wasn't it just the other day we waited in the new year? This weekend Bianca leaves for Camp Quality, she is so looking forward to it. Of course I need to still put together her costume for camp - they'll have a themed evening and this year it will be "super heroes". I tried to convince Bianca that she could be a fairy super hero, but no, she insisted she wants to be Super Girl. So off I went in search of things to use to make this costume (we are supposed to make something, not buy a proper dress up). I got the combo slightly wrong (blue for the skirt (when most pictures show red), a red shirt (when most pictures show a blue shirt), but oh well, it's not the end of the world. So wish me luck!

I must say I'm really enjoying this Photo a Day blog thingy that I've started a week ago. It's been cool to focus on something different, on life, without much expectation. It is quite hard just coming up with one photo (we tend to get quite camera snappy happy, or something), but I guess a year from now will be cool to look back and say "wow, so on the 12th of January 2010, this is what we got up to"


Of course some of the other people put my photos to shame and they talk about F-stops and lens sizes and photoshop techniques (my photoshop knowledge goes as far as making rounded edges, putting a border and resizing an image, but more than that? Not so much). But that's not the point I guess. It is supposed to be fun and that's what I'm focused on.

I can't believe Caitlyn will be turning 3 next month. Wow, really? It feels like just the other day when she was still a baby and now she's all grown up already. She is so excited and can't wait for her birthday party. Pretty much every single day she talks about her birthday party. The other day she wanted a pink cat party, but today it is Winnie the Pooh and Piglet. We still need to find a venue (our place is just way too small), and then I need to think of a cake.

And that's us, in a nutshell, at the moment, pretty much!

Having fun

I have been having good fun with my photo-a-day challenge blog. It gives me a different focus, it is a simple concept really, but so cool.

I know Terence says I'm missing the point and it really should be photos of myself, but I'm not a fan of taking photos of myself. I much rather prefer to be the photographer snapping away behind the camera (not that I'm a very good photographer, but whatever). Some people simply just put a photo (no words necessary), but their photos are just so creative and beautiful and artistic, not like my photographic abilities. So I tend to put a bit of explanation of what it was about. Maybe as I go along I'll get much better at it. But in the meantime I'm just having some fun with it.

But do you know what I enjoy even more? Is to look at other photos - so come on, use your current blog or create a new one and get going and share the link so I can see your photo of the day!

A photo challenge

I have taken up the challenge to take 1 photo every day of the year. Not quite sure if I'll actually be able to stick to it or not, but what the heck! I'm going to try anyway. And now I'm challenging you too to take up the challenge. If you do, be sure to leave me a comment with the link :-).

So I'm trying a brand new site I've never used before, but seems pretty perfect for something like this (Click here for this site). And just because I'm me and because familiar feels comfortable and safe I've set up a blog for my photo challenge and then as I go along I'll see which one will work best. So for the photo challenge blog, click here.

Warning - my first photo is a boring and predictable choice, but hopefully as I go along I'll become more creative in my photo choices.

So here goes - TAG YOU'RE IT!!!