Terrible-twos

I have forgotten how much work a move entails. Well actually I have not forgotten, just sort of shifted to the back of my mind the last time we moved. And each time I gain momentum and motivation to just get started (I mean really, how hard could it be to fill up a couple of boxes?) until I enter the garage where we still have a bunch of stuff that we need to sort out, have you ever seen motivation run so fast? But anyway, I really just need to get my act together.

Today Caitlyn came with me to get Bianca from school and she decided it was the perfect time to act up. She ran into the library and I helped her out (as we were on our way to the office) and she screamed. So then we went into the office until it was time to go to Bianca's class and she went to sit on the one couch and she lay down on her back and the more I tried to encourage her to come with me, the more she rolled around on the couch saying "rolling, rolling" so of course she was not impressed when I helped our out of the office. We walked towards Bianca's class and Caitlyn sat on every single bench along the way (or so it felt). Then she ran to the wrong set of classes and was not impressed with me when I asked her to go a different direction. Finally we made it to Bianca's class and we waited for Bianca to come out and then Caitlyn decided it was the perfect opportunity to run across the field - this tiny little person in amongst much bigger kids who were all excited to see their parents at the end of their school day. Urggh! So there I was running after Caitlyn (you don't realise just how fast they can run, until they run away from you in a not-so-baby-friendly environment). When I managed to stop her and picked her up, she screamed "walk self, walk self" and she kicked her little legs and we got back to Bianca's class, I sat her down on the bench to put her shoes on and the one mum asked "what's wrong?" and I said "oh she just turned two".

Caitlyn is adorable, oh so cute, she's got a great sense of humour, but she has a very independent and strong-willed personality. She knows what she wants, but unfortunately it is not always what we want. Oh lovely terrible-twos!

I'm really looking forward to the weekend, although we probably won't have much time for rest, what with packing and all...

A temporary opportunity

I will be temping now in March. Just for the month. It is with a company I temped at when we just arrived in 2004 and at the time I temped there for around 6 months. I really enjoyed it too. So now I'm going to help them out again. It will be interesting to see how going back to work will work. It has been such a long time and I must say that the "what ifs" are running around in my mind. So we'll see how it will work. I guess that is where starting off with a temp option is great in that it gives some flexibility.

One of the managers at the company and one of the ladies in his team have decided that they will be shaving their hair to raise money for the Child Cancer Foundation. They will be shaving their hair on the 27th of March at the office and I think it will be a fun event! Go check out John's fundraising site here: (http://fundraiseonline.co.nz/johnpearson). I think it is so amazing that they are wanting to do something for the Child Cancer Foundation.

Bianca had a play date with one of her best friends and it sounds as if she had loads of fun. Tonight she has written a letter to her friend inviting her to come and visit at some stage (so I guess us moms will have to start discussing possible times).

And... we will be moving soon again. We love the house we are in now, but since Jody left and we are not looking for another au pair at this point in time, we find that this house is really too big for us at the moment and so it would be better for us to move to somewhere smaller for the time being (and spend less time cleaning each week - which should be good) and of course we will then get to save some money and hopefully at some point be able to work towards our own house. That would be cool. We've actually been making a number of changes to how we are doing things this year. Things we were going to start doing at the start of 2007 and we then had Caitlyn and then shortly after Bianca was diagnosed and so a lot of those goals got put on hold. And so we feel that we are now back in a position where we can start focusing on these goals again, so we've been working hard at updating our budget, we are now doing weekly shopping instead of daily shopping and actively looking at ways we can save. It is pretty hard changing old habits, but it does feel pretty good forming these new habits.

Quick update

Just a quick update tonight:

Things here are going very well. One of the teachers at Bianca's school mentioned how much more energy Bianca seems to have nowadays. Bianca loves being back at school, she loves being with her friends and in fact has a play date with one of her best friends tomorrow.

As for tennis - Bianca enjoys it so much that she wants to have a second lesson a week and we told her that if she still enjoys it by the end of the term, then maybe the next time we could book her in for 2 lessons a week. At this afternoon's lesson Bianca managed to hit the ball over the net a couple of times, she was so excited!

On the eating front, we are doing very well indeed. Bianca is still willing to try something new every week, she is still eating bananas and some raisins that she tried before. And despite the fact that there are a range of things she doesn't actually enjoy, she is still very much willing to try and that is the most important part after all.

A special birthday party

Today we had Caitlyn's birthday party. Just a small little party with just the four of us. And as far as Caitlyn is concerned it was perfect. There were balloons, yummy food, a birthday cake with 2 candles and best of all... presents!

We chose a Winnie the Pooh theme - after all, the Winnie-the-Pooh characters are her favourite, although she just recently discovered Curious George and she finds it so funny.

I made some party food - really basic stuff and we tried to keep it relatively healthy, but of course you can't have a party without some sweet treats too.

And mean Mommy that I am, we served the bread, fruit, sausage rolls and little sausages first and after we were sure the kids ate something from this selection, did we serve the chocolate and chips (or crisps - I once worked with a girl who came from the UK and she couldn't handle it when people say "chips" instead of "crisps").

And of course then it was time for presents. Caitlyn opened most of her presents all by herself, but every so often asked her big sister for help and Bianca was more than happy to help.

One of the presents that we gave Caitlyn, we bought on the 26th of December when our one shop had some specials as part of their Boxing Day Sales. And we bought this set for $20 (before the sale it went for $49), so I thought it was a pretty good bargain at the time.

Caitlyn had a great time pretending to take Pooh Bear for a walk:

And even tried out the baby cot which looks similar to her own cot - wow, Caitlyn has really grown up :-). I think she felt a bit confused at times and didn't quite understand why it looked like her own cot, but she wasn't able to lie down.


And finally it was time for the cake:


We had a great time indeed! Thank you so much for all the birthday wishes we received through our blog and email!

A letter to my little girl

Dearest Caitlyn,

Today, two years ago you joined our family - all 4.7kg (10.3 lbs) of you.

Your big sister was so very excited to finally meet you. She had her face painted at daycare before she came to the hospital to say hello. And I remember how much it bothered her when she tried to put on your hat and you cried. She was so worried that she hurt you, and we had to explain that crying was your way to talk to us.

I remember your very first smile. I was at the computer and we were about to leave and you were all strapped into your seat and then you just smiled, a big toothless grin!

And when Bianca became sick, you never once complained, you just fitted in. Be it in the hospital playing with your toys:

Or letting your big sister feed you during her blood transfusion:

And when she was staying at the hospital for a very very long time, you were right there cheering her up. You were good at that.

You offered hugs:

And smiles:

And you always kept things happy, giggly and normal to Bianca and us:

And suddenly before our very eyes, you became this bright, energetic little 2 year old girl. No longer a baby, but a little girl. A happy, confident, know-what-she-wants little girl:

And here you are, all walking and talking and saying things like "I see you" and "later aggelator" and "have fun" and "no sancs" and you can count to 10, and you know so many more words, the list would be too long to put here.

Caitlyn we will always be so happy that you came when you did. You were just what we needed to keep things normal and happy and when things were difficult you forced us to focus on what you needed. And you just slotted in. I sometimes wonder what memories are stored away in your mind. Certainly for most of your life you have known a life revolving around the hospital. You have seen Bianca connected to all these tubes and wires, you've spent so many hours there just waiting, you know that Bianca gets medicine and you include it in your play sometimes where you pretend to give somebody medicine, you have spent so many hours apart from either your daddy or me. But despite all this, you have always smiled and brightened our day!

And Caitlyn, thank you so much for all the giggles and smiles you have shared with Bianca at a time that was no doubt difficult and challenging to her - she loves being your big sister!

Happy birthday our special little girl!

"Truth or Dress"

You know you've just completed a week of steroids when it is time for Bianca's afternoon rest and she entertains herself by writing little notes like this one:

So then she came down to show Terence her note and he told her that it was still resting time and that she needed to wait a further ten minutes before he was going to get her something to eat.

So she went back to her room and wrote her dad another note:

(the last word is meant to be "please").

So how can you then resist?

This morning we were greeted with extreme hunger. Bianca ate 3 bowls of oats for breakfast and then consistently complained of being hungry the whole day. It can be a little challenging, but at least we didn't have any grumpiness or sadness and we didn't have any weird cravings, so I can live with the hunger. And certainly I think Caitlyn's little celebration tomorrow will fit right in with Bianca's appetite.

I must say that after this last week I actually feel fairly exhausted. Okay, it didn't help that I went to bed really late a lot of the time, but certainly you prepare yourself a whole month for that steroid week, you hope for the best, but you also prepare yourself that it might be a pretty hard and challenging week and it is hard when Bianca suddenly deals with a big appetite, begging for food the whole day long, or getting weird cravings just because she watched Asterix and they make Wild Boar look so appetising, or she watches Winnie-the-Pooh and suddenly wants to eat some honey (not on bread or anything, but put on a spoon). And especially when she suddenly feels sad, grumpy, quiet - that is hard to deal with. So then when you reach the end of steroid week, you are left feeling pretty tired and exhausted.

But here we are, at the end of this week and it is great taking a break before the next steroid week.

Tonight Bianca decided to pretend that she was a game show host and Terence had to be the the contestant and I had to be in the audience. So I whispered in her ear "say to Daddy truth or dare" and she said to Terence "truth or dress", I whispered again "no, truth or dare" and she said to Terence "truth or death", so by that time Terence was laughing so hard and I had to stop the whispering. So there Bianca sat asking her dad all sorts of questions "what is your favourite show?" "what is your favourite colour?" and so on, and each time she held up one of the little signs she made and then I either had to clap hands (when she showed the "clape please" sign) or show a grumpy face to Terence when she showed the picture of the grumpy face or point my finger at Terence when she held up the picture of the finger she drew. It was great fun!

Another month of steroids done

Last day of steroids for this month. And best of all - this week was pretty mild in comparison to some of the other months we've had and we didn't have any weird cravings, we didn't have any grumpiness or extreme sadness. We did have a sad moment today though when Bianca tearfully asked when her dad would come home after work, but it wasn't very challenging and she coped so well with school this past week.

This weekend is going to be a weekend of celebrations with Caitlyn's birthday on Sunday. We are keeping it really small with just the 4 of us - after all, as long as she has presents, cake and balloons, she will be happy. I absolutely cannot believe she is turning 2 already!

So far so good!

Bianca hasn't had the intense hunger as yet. She's been hungrier than usual, but not frustratingly so. For most of it she seems fine, but her teacher definitely noticed that Bianca was a bit more emotional, but mentioned that Bianca worked hard to not let it become an issue. Tonight Bianca also has her usual steroid-induced sore tummy, but it is not a worry at this point in time. At least only 2 more days of steroids left for this month.

Reality-check

For most of it, we are doing really well. I would say we adjusted pretty well to this new life, this new road we are walking. But I guess it is easy because Bianca just takes it in her stride. She does what she needs to, she never asks "why?", she doesn't mourn her "previous" life, she lives for the moment and most of all, she smiles.

But sometimes there is a reminder, a wake-up call that our journey is so very uncertain. At times it does feel a bit like you are in a room, you switch off the light and in that instant the room is so dark that you are not able to see your hand in front of you, but you have to walk back to your bed. You know the road, but the road is dark and at times you do bump yourself along the way. So far we have managed to walk this road, despite not quite knowing what lies around the corner. If anything does freak me out it is the whole unknown factor. So at times when my mind wants to drift too far along the road, I have to remind myself to stick to what I know. To stick to now. I hate not having control and right now my control lies in the knowledge I have gained, our treatment plan and I guess looking back at how far we've come.

And whilst we feel excitement that September really isn't too far away, sometimes there are reality-checks that remind us just how unknown this road really is. And today I had such a reality-check, I felt really shocked when I read an update on another little girl's journal. She is about to turn 6, but has just had a relapse. She's had the exact same type of cancer as Bianca has now. That was 3 years ago when she was first diagnosed and now suddenly little Hannah has to fight all over again. And not just that, but so much harder than before. It must be such a scary place to be!

Hospital visit, steroid-week and a brand new tooth

This morning was day 1 of 5 for steroids this month, so this morning I had a quick chat with Bianca's teacher to warn her that there might be a couple of side-effects to deal with this week. I got Bianca from school early today and then we headed off to the city, first to Terence's work (as he needed the car to get Caitlyn from daycare) and he dropped us off at the hospital for our monthly appointment.

I was thinking today that a large portion of our treatment has always included a lot of waiting. In hindsight I think it would have been interesting to know just how many hours we have been waiting to date, but I never actually ever recorded the exact waiting time throughout our treatment.

So we got there, did our blood test and waited for an hour and during that time, Bianca and I went to the Ronald McDonald room and had some lunch and then at around 1:55pm we went to Clinic for our 2pm appointment. We then waited probably until 2:15pm before we managed to see our doctor. It was a pretty good visit. Bianca's counts are all excellent. Well, actually Bianca's neutrophils are way too high and our doctor has increased Bianca's chemo to 100% dose. It was during this visit that I noticed Bianca has a tooth coming out behind one of her baby teeth at the bottom. Our doctor is not too worried that the baby tooth hasn't fallen out as yet, so we'll just keep an eye on it.

And then we waited until they were ready for us up at the ward where they currently do the actual treatment stuff. Finally at 3:30pm we were on the ward and Bianca was accessed pretty quickly and then we waited in the waiting area by the nurse's station until a bed became available in the day stay room. And then once we were settled in the day stay room we waited for our 2.5 hour IVIG to run through. During that time Bianca had a brief moment where she seemed a bit on the grumpy side, not too interested in eating her supper (but she did finish it which was great) and then by the time we went home she had cheered up again.

Bianca and I had to take the bus home and just our luck, they are doing loads of roadworks in the street just outside the hospital where we would normally catch the bus and so we had quite a bit of a walk to the busstop. We walked over the Grafton Bridge which is currently closed for car traffic, but open for pedestrians and cyclists and Bianca first loved watching the cars go on the motorway below the bridge and then at one point wondered why I did not bring her and her dad's bicycle so that the two of us could cycle to the other end.

We are due back at the hospital on the 3rd of March for another blood test to see how the increase in chemo would affect Bianca's counts and other than that we are now just waiting to see what this week's steroids will bring.

About parties and steroids

And so far so good. Caitlyn seems fine, and she even sounds a bit excited about her upcoming birthday. Well, not that she would know which date is which, but we've been talking about it a little bit, about how on your birthday you have cake, and balloons and presents - and you should see her face light up. It is just going to be very very small. Just the 4 of us. Next year we'll do a proper party for her, but this year, I think as long as she has some cake and presents, she will be happy. I honestly cannot believe she is going to be 2 already. Time really does fly.

Speaking of birthdays I also have to start thinking about what to do for Bianca's birthday. This year will be bigger than last because this year she has so many friends at school. So today we started making a list of the friends she plays with at school and started thinking about who to invite to her party. I will also have to start thinking about activties, a cake (and my cake-baking skills are not that great!), where to have this party and so on. If anybody has some cool ideas about where to have an indoor party on the North Shore of Auckland, and what activities might be really cool for a 6 year old, that would be great! It has to be an indoor party because Bianca's birthday is in the winter and most likely it will rain.

And whilst we still have a few months before Bianca's birthday, we all know how time can fly and the date will be upon us before we know it!

Tomorrow is our monthly hospital appointment again, and our monthly 5 days of steroids. I'm not quite sure what to expect. Last month was certainly way better mood-wise, but also way more challenging craving-wise. And we are back at school, so I'm wondering how Bianca will cope with the school days and being on steroids. I guess we'll just have to wait and see.

Tummy Troubles

You know how I wrote just last night how things were going well? In fact things were going so well that I ended up writing about the weather - something I don't usually write about (okay fair enough our weather has been a bit extreme for us and was probably worth a mention anyway), but that's not the point, the point is things are going really well at the moment.

Or it was until probably around 11:30pm last night when Caitlyn woke up with a scream saying "tummy hurts", and so I rubbed her tummy, held her in my arms for a bit until she asked to go back into her cot. And then it was probably maybe 10 minutes later when she woke up getting sick all over herself. And so we changed her, changed the sheet on her bed, switched off the light, I stayed with her a little bit and then probably not even 10 minutes later, again! So in the end I decided to sleep in her room just in case.

Turned out to be the right decision because I spent the night just falling asleep, then getting up, changing the sheet, letting Caitlyn lie next to me until she was ready to go back to her cot, then just falling asleep again, getting up, change the sheets and so on over and over again, at some point we ran out of sheets, then started using towels to put over her mattress, and when we ran out of that, we ended up just using some duvet covers until finally around 3am (well I think it was 3am) we managed to get some sleep until it was time to get up around 6:45am.

So I fully expected that if this was a tummy bug we would continue with this pattern throughout today, but she woke up with a "tired!" when she realised I was awake and she was pretty much her usual self (apart from being a little bit more tired), her appetite was pretty much as it was, no more episodes of her getting sick anywhere and tonight at 8pm she went to bed her just like usual. So I'm almost inclined to say that maybe it was just that her tummy got a bit upset after supper last night.

And what do I have to show for last night? Around 6 loads of washing that we accumulated throughout the night!

So let's just say I'm hopeful that tonight will be a much better night for us and we can get back to our boring-things-go-well kind of days.

We are hot!

Firstly thank you so much for all the messages for Bianca. Her face lit up when I told her there were some comments and emails just for her. She had such a great time reading these messages. Thank you, you really made her day!

Things here are going pretty well. Except for the weather. Oh boy! It has been hot. I must say I much prefer the cooler weather and I guess our 27 degrees celcius (some of the days) isn't nearly as bad as some friends have been having in Australia, but combine our 27 degrees celcius with 95% humidity - that's tough! Well tough for me anyway! Okay fair enough today wasn't 95% humidity, but earlier this week it was! And unfortunately our house seems to attract the heat a bit, or at least that's how it feels to me.

But other than that, things are going very well here. Bianca is well settled at school, she is enjoying it and we seem to be well on track with our chemo schedule. I am confident that when we go in on Monday that Bianca's counts will be great! Of course the not so nice thing is that it will be steroid week again and I'm hopeful we will have a hungry rather than a sad or grumpy week. Even if I have to deal with cravings like cravings for wild boar.

And then we have to start planning Caitlyn's second birthday which will be on the 22nd. I'm not quite sure what we will do, I think she will be happy as long as there is cake, balloons and presents and I don't think she has formed any close friendships as yet at daycare, so probably just something small. We'll have to see.

Making promises, breaking promises

It feels like yesterday when Bianca was photographed in front of the Grace Neil building at the Wellington Hospital. It feels just like yesterday. But in fact it was the 3rd April 2008 (see article here). Bianca was in hospital with shingles at the time. I remember that the reason they chose to photograph Bianca in front of this building was because there were talks that they might consider moving the oncology ward into this building. And in fact there was a whole news article on this proposed move on the 3rd of April 2008 (see article here). And if I remember correctly parents even attended a meeting with the management representative and the proposed move was met with great excitement. Finally there would be a chance to have a unit that is completely seperate from the general Children's ward.

The problem with cancer is that it affects your immunity and your ability to fight infections and all these kids can get chickenpox, measles, mumps and all these other horrible diseases again, and again, and again. And even something minor like a cold or maybe flu could become potentially life-threatening for these kids. It was in 2007 when Bianca had a viral infection and spent 34 days in hospital, in isolation on oxygen most of that time. It was during that time that she had a broncospasm that required immediate attention from the medical staff.

Now I know that shortly before we left for Auckland, they made some attempts to create some seperation between the Oncology side and the general children's ward. But even then it was fairly limited with the available space. In the Wellington Children's hospital they have two wards - Ward 19 (which is mostly for babies and then a serious infection isolation unit with around 6 rooms for kids who might have chickenpox, tummy bugs and so on) and then Ward 18 which is for the older kids up to 15 or something and it is also this ward where they have the Oncology side. Fair enough they created a day stay room with 4 beds, a seperate treatment room, but at that point it still had shared toilets (but they may have changed that now already) and then 2 - 4 (I can't remember exactly how many) isolation rooms dedicated to the oncology kids. But either way, it was still very limited in space, especially now that they have started bringing back many of the patients they sent away when our oncologists left.

It was all good that they wanted to make some of these changes, but the way it was when we were still there, we still had regular visitors and potentially very sick general patients walking past these dedicated oncology rooms, so many of us felt the risk was still there.

So fair enough they have probably since then made quite a bit of changes to these dedicated areas within the general children's ward and it might very well be more isolated from the general patients - I don't know. We haven't been back and I'm really not sure at this point.

I guess I was just really disappointed when I saw a news article today that they have now turned around again and decided to keep the Children's hospital where it is (read article here). Somehow it seems to be the way it is, make promises, get people off their back, just to turn around and go back to how things were. Okay fair enough their reasons are valid - they say it would be very cramped in the Grace Neil block - although when I was there in that building when Caitlyn was born, certainly the room I was initially in was really spacious, I mean it was probably twice the size of any of the rooms Bianca ever stayed in, and the room I was in afterwards, although much smaller, I seem to remember it was no smaller than the usual isolation rooms they used to put Bianca in at Wellington hospital. And I guess I have to wonder when they planned the brand new building, why they never allocated space or included the Children's hospital or Paediatric Oncology in their design and eventual building process. And certainly I heard rumours that they spent thousands of dollars on landscaping, when in my mind, that money could have been spent on some essential services at the hospital, when you're sick you don't exactly care what the outside looks like (in my opinion anyway).

And all I know is that I am really really happy we are here in Auckland, with our dedicated oncology unit where they are currently actively making improvements. And I think our decision was very good for us! After spending 113 days in hospital with various infections, we really want to minimise the risks to Bianca and limit her exposure to other serious illnesses.

Show and Tell

Hello everybody, this is Bianca here.

Last night Mommy was up until very very late. She got some of my photos and she made a very special book all about me!

It was all about how our red blood cells are just like little postmen, but instead of delivering letters, they deliver oxygen to our bodies, the platelets are our tiny little doctors and each time we bump our knees and toes, they put their special plasters on and the white blood cells that are just like tiny little soldiers fighting the nasty bugs that want to give us colds. My soldiers are all sick and can't fight the bugs very well. They need special medicine to feel all better.

Mommy put lots and lots of photos in all about when I lost my hair and when I go to hospital for my special medicines. Even photos all about getting a finger prick and then a yummy lollipop for being very brave. I really like the photos when I get my special medicine in theatre that looks just like milk and makes me really sleepy. I told Mommy that it makes the hospital shake when they give it to me.

So then Mommy came to school today and I got to do a Show and Tell for my class - all by myself! I even got to sit in my teacher's chair - I felt so important! See how nice my classroom is?

My Mommy held up the photos so the class could see as I read my story to them. My Mommy said I read really well. She didn't even have to help me with any words.

Afterwards I got to show all my beads to my friends and they all wanted to know why I got all my beads. I know which ones I get for finger pricks, but Mommy had to help me remember some of them.

I gave my friends all a turn to touch my beads and to put it around their necks and then my teacher asked that they all come and put my beads around my neck - all 7 necklaces. I have lots of beads and I really like my beads.

Mommy let me give one of my books to my class to keep and she made one for me at home. I like reading stories that are about me. My teacher was so happy that I gave them a book and she lent me one of the really big books we read in class.

Please leave me some messages. I can read things all by myself now and I like it when I get messages that are just for me!

It really sucks, doesn't it?

It hits me every single time.

Another little child (a 7 month old baby in fact) passed away from cancer. I didn't personally know little Declan and it is only recently that I discovered their journal, but despite this, my heart breaks for them. It is just so incredibly incredibly sad. And that's the thing about cancer, it doesn't discriminate, it doesn't care whether it is a baby, a child or an adult, it affects us all the same and it doesn't matter which country we may be living in, this club is truly universal! And the one time you wish you didn't get picked for the team, was the time that cancer picked you for its team.

Please keep little Declan's family in your prayers tonight so that they will find comfort and strength to help them through. You can visit his site, by clicking here.

And little Declan, even though you were only 7 months old, you have changed the world in your own little way! R.I.P. little one!

Bookworm

Sorry for only updating now, Terence and Bianca came home pretty late last night and I did not have a chance to update again. Bianca is doing well and the bruise ended up being nothing more than a bruise. Her platelets and all other blood results are really really good. So that is a big relief, because low platelets and bruising could mean internal bleeding and that's not really where we would like to be. Thank you so much to all of you who commented and emailed with your concern!

Tonight Bianca read her two school library books as they haven't really got homework as yet and it was so cool to see her read so well. She didn't need to point with her fingers and she did not struggle with many words at all. She did struggle a bit with "certain" and "chameleon". And she was so incredibly proud of herself for reading the word "adventurous" all by herself without any help from me. I have no idea what her reading level is as the teachers are still doing their assessments. What I do know is that she is able to read most things now without any help, and she loves reading. Just the other night she asked her dad what it meant when somebody said "bookworm".

And right now things are going really well and we can't complain at all. At times I'm getting quite impatient as I just really want to get to September already and I can't help wondering what it will be like when we have no more medicines at all. But then I remind myself that before I know it we will get there. After all, I can't believe that we are already in February!

A busy weekend

On Thursday Terence had his birthday and we had a small family celebration with just the four of us at home for him. We baked a cake, we had balloons (because as far as the girls are concerned you have to have balloons on your birthday which was really just an excuse to have a balloon fight) and he got a few presents and Bianca even made him a card (and she wrote "To Lea" on the outside just in case he discovered the card and that way she could trick him). And then our weekend started with a public holiday - Friday was Waitangi day here in New Zealand and so Terence spent the day at home.

Recently we've made some really cool new friends through Facebook and so on Saturday we caught up with Chantelle, Elize and Kelli (and family) and had a really nice time chatting and eating supper and around 8pm we left for home as Caitlyn needed to go to bed. This afternoon we caught up with another relatively new friend (although we've been chatting on Facebook for a while and our kids go to the same school). And finally we managed to catch up. The last time Mika and I caught up was when I was at the beach with Bianca and Caitlyn (all by myself (and I had to keep running after Caitlyn). So Bianca had a great time catching up with Annie (sorry Mika, can't remember how to spell Annie's full name). At some point during the visit Terence went to go and get Caitlyn who woke up from her nap and he called me and told me to go and look in Bianca's room. Got there and Bianca had taken out all her toy tea cups, plates and stuff and set them out nicely on a little table. Okay, so that's cool. And then just to be creative and make things interesting Bianca decided that empty cups weren't that interesting and what better to fill that up with a mixture of liquid soap and water and sprinkle with some of her toy makeup. So we've had to have a nice chat with Bianca and discussed why she couldn't do that, especially in her room with a carpet. Lucky the mess wasn't too bad and we managed to prevent any stains on the carpet.

And then in typical leukemia fashion - right now Terence is at the hospital with Bianca. We noticed a bruise by her port, but have no idea how long it has been there. We do know that she was accessed on the 19th of January and we are not sure if it is as a result of that or if her platelets might be a bit low again. So right now they are waiting for blood results and if all goes well will be home soon. I am hopeful her platelets have not dropped which would then probably mean that oral chemo would be put on hold (and we've just been increased to 75% dose), so fingers crossed it is nothing to worry about.

Award

Wow, thank you so much Renee! Renee presented me with the lemonade award. Renee has a really cool blog, and it is one of my favourites!!!

Here are the details of the award:
This award is for those who show GREAT ATTITUDE and/or GRATITUDE! if you are given the award, then put the logo on your blog or post. next, nominate at least 5-10 blogs which show GREAT ATTITUDE and/or GRATITUDE! be sure to link to your nominees within your post. let them know that they have received this award by commenting on their blog. share the love and link to this post and to the person from whom you received your award.

And now I nominate:

Suzanne (they are amazing people and their little boy was recently diagnosed with cancer)
Annie at Living with CML
Kristy at Passion for Purple
Ben fights leukemia
Lori at Am I really going to blog? (She is very amazing!)

Do visit these blogs - they are all amazing!

A pro in the making

We've decided that it was time to include a sport in Bianca's routine. But of course there are limitations due to the Vincristine that she gets once a month which means that she doesn't have a great balance and certainly does not run as fast or well as other kids at this stage, so we figured that tennis might be a good sport to introduce. Well at least I don't think it would include excessive running (I can't really remember as the last time I attempted to play tennis was when I was around 10 years old). I hope she will like it. The instructors are great fun, and they seem really good with the kids.

And here is our little pro in action...

When the instructors talk you have to stand still and listen nicely

Okay so this shot looks a bit like she was doing the haka on a tennis court:

Managing to hit the ball:

Day 1 of Year 1

What is the first thing you do on the first day of school? (Well technically it is not Bianca's very first day of school (that was Year zero for Bianca), but it was the first day of Year 1 for her).

You give your new teacher an apple. A red one. The biggest one you could see on the pile of apples at the store. Because you can't just take any apple you see, choosing an apple for your teacher is a big important job.

Okay, so perhaps this isn't really the first thing you do on your first day of the new school year, you have to let your mom take lots and lots of photos. "But why Mommy?" "So that you can remember, you know, when you are 30 years old and can't remember what you looked like when you were in Year 1" and so you stand where your mom wants you to stand and you smile when she tells you to smile. And you picture your dad slipping on a banana and bumping his head against the wall (because that's what your mom tells you when she tries to get you to smile).

And finally you join your friends...

Bianca had a great first day at school. She is quite disappointed that her very best friend is not in her class, but I told her she could still play with her friend when it is lunch time and we could still organise play dates. And she does have other friends in her class too. I think Bianca is really happy to be back and certainly for the past 6 weeks she's been asking when school would start again. This morning I wrote her a little note and I put it in her lunch box. She really liked it and asked that I do it every day (okay I'll have to go look in the garage in amongst all the unpacked boxes if I can find where I packed my spare creativity, because I think I might just need it, it is probably in the same box where I packed my motivation to get through all the unpacked boxes) :-).

And of course I'll have to get used to "so what did you do today Bianca?" "I forgot" again. That's the part that I still find the hardest about school, having to let go and let the teacher be there for her and I need to take a step back. For a long time I was there, every single step of the way, because when Bianca was diagnosed she wasn't able to go to daycare and so I was the one (as well as our Au Pairs) who did all these activities with her, and so when she started school last year in July I really struggled with the whole "I forgot" kind of answer. Thankfully I built a really good relationship with her teacher and I managed to get good feedback. But it's hard to let go, although I will never want to take this away from her.

Having her in school, that is like a dream come true for us. It means that we can incorporate "normal" into our lives. Fair enough, the leukemia is never far behind and there are always those little reminders, like when I typed up some information for Bianca's new teacher about wanting to know when Bianca falls, warning her that there could be steroid side-effects, listing the days where Bianca will need to be at hospital and won't be at school and asking the teacher to discuss concerns (because the reality is that sometimes there could be long-term effects as a result of the chemo). And I'm the only parent who sends hand gel with my kid to school. So yes, there are reminders. But certainly we feel so incredibly blessed when we see her so happy at school, when she picks up a book and reads us a story, when she hugs her friend really tight to say goodbye, when her face lights up each morning knowing that she'll go to school.

We feel so blessed that we found such a wonderful school for Bianca with such wonderfully supportive staff. In 2006 Oteha Valley School received an OECD award for its learning environments, and it has been included in an international compendium of exemplary educational facilities. An interesting aspect of Bianca's class is that she has some Year 2 children in her class and I think that will really give her a chance to extend her learning.

I think this is going to be a very exciting year!

If only I could remember...

A number of years ago I read a book, it could've been one of those Reader's Digest books with a collection of stories. For the life of me I cannot remember what the story was called or who wrote it, but all I remember was that it was about this doctor who one day noticed strange bruises on his kid's legs and he asked his kid where the bruises came from and she said that she didn't know. Turned out that this child was diagnosed with leukemia. I can't remember anything else, I can't remember if it was based on a true story or even what the outcome was, or anything.

Of course at the time I had no idea that eventually leukemia would become our reality. I do remember one day (probably somewhere in 2005), that we were at the shops paying for our groceries and I noticed all these bruises on Bianca's legs (she's always bruised easily, and for most of it we just assumed that it was as a result of playing at daycare or playing at home and I do remember always just praying that these bruises would never look like finger marks because that would be hard to explain...). On that day, for some or the other reason, I felt a bit worried about the bruises and I remembered reading this book where bruises were the significant aspect. I turned to Terence and with tears in my eyes asked whether he thought it could be something like leukemia. I don't know why, but in that moment I felt a bit scared. Terence looked at me and said that there was no way it could be. And so for a while we shifted it to the back of our minds. The reality is that even if we did do something about the bruises then, we wouldn't have known way back then. Once we asked our one oncologist how long before diagnosis would a blood test reveal Acute Lymphoblastic Leukemia and he indicated that perhaps 2 months before diagnosis, but before then, it would not have revealed anything.

Ever since then there will be times when I wonder about that book I read so many years ago and it actually bugs me quite a bit. I would very much like to read this book again, but of course unless I am able to remember more or less who wrote it or even what it was called, I can't see myself finding this book anytime soon. And today was no different, as we waited at the Ronald McDonald family room in between getting Bianca's blood test done and waiting to see the doctor, I noticed they had a stack of Reader's Digest books and I searched a bit, but I couldn't spot the particular story I would very much like to read again. But anyway...

Our hospital visit was a good one and Bianca's counts are great! Her neutrophils are sitting at 2.46 which is just a bit higher than where they would like it to be. As a result Bianca's chemo dosages have been increased to 75% and if all is still well in 2 weeks' time when we are due in for our next monthly appointment, I think they might increase it again, but we'll just have to wait and see. The timing of the good counts couldn't be better because tomorrow Bianca starts school again and the good counts certainly is a blessing!

Reflections at the start of February

Wow, here we are at the start of February already. And we only have another 7 months, 1 week and 3 days left of treatment. Every so often, I go through her beads to see where we are at and how many she's accumulated to date and it is quite astonishing really, we now have close to 1,000 beads.

Since Bianca was diagnosed beginning July 2007 (which was 609 days ago), Bianca's experienced the following:

• 446 days of chemotherapy
• 112 finger pricks, port access, injections
• 113 days in hospital as an inpatient with various infections (one of these infections were an unknown viral infection of 34 days, mostly on oxygen and in isolation)
• 88 days in isolation
• 72 various tests
• 1 surgery to insert a port
• 3 times where Bianca either lost her hair completely or had significant hair thinning as a result of chemo
• 16 lumbar punctures
• 4 bone marrow aspirates
• 15 dressing changes
• 33 clinic visits
• 4 nose tube insertions where Bianca was fed through her nose tube
• 39 blood product transfusions (red blood cells, platelets and plasma)
• 19 days of IV antibiotics
• 32 unusual things

But despite all this, Bianca's love for life, her enthusiasm for learning new things and her smile on her face is a constant reminder that it is indeed possible to live life despite cancer. And most of all, it is hard to believe just how far we've come in this journey. I've been going through some of our photos and it sure does bring back memories!

Here is Bianca before she was diagnosed. Bianca always had very short hair and it took us nearly 2 years to be able to make these tiny little ponytails and finally when she was around 3.5 years old we were able to tie her hair up properly.

This photo was taken the very first time she was admitted to Wellington hospital, technically she had leukemia already here, but that was before she was formally diagnosed and before she got her port. We didn't realise at the time just exactly how pale she was.

Oh lovely steroids, see how puffy she looks! Initially when Bianca started losing hair we got it cut before finally shaving it all off.

This one is my absolute favourite! This was a little while after we got her hair all shaved off. It was a huge relief for Bianca because she couldn't handle waking up with hair in her mouth, on her face, on her fingers and everywhere. And we thought she looked beautiful!!!

One of the hardest days for me personally was when Bianca was in hospital for 34 days in isolation and on oxygen due to an unknown viral infection. I could handle a lot, but the day they said that she was going to get a nose tube, that was tough. We fought so hard to get her to eat and she just wasn't interested and so we had to tell her that she was going to get a nose tube and she looked at us and said "I will eat" and I had to say that it wouldn't make a difference, she still needed to get it. Terence took her to the treatment room and I remained behind crying. In the end it did take some of the preassure off from trying to get her to eat, and in all honesty once it was in, it really wasn't too bad, it was really just hard getting it in. In this particular photo Bianca has her nose tube, her oxygen tube, she has an IV line into her port and she was connected to an ECG machine (if I remember correctly), and most of all - her smile!!!

I have to say I love this photo too. This one was taken last year at one of the CCF activity days and Bianca loved playing with the bubbles.

And as you can see even today Bianca loves just being a 5 year old girl. She knows she is sick, but she doesn't make it an issue in her life. And that's what we've learned from her that no matter how hard life might be, no matter what it might throw your way, it is possible to live life to the fullest and smile!