All going great!

At the moment things are going really well.

Bianca is happy to eat whatever I pack for her school lunch and I feel quite proud of myself for packing something that is relatively healthy, so that is good. And I think she's definitely using more energy than before because often when we come home, she complains that she is hungry. So, pretty good appetite-wise. I was worried that the eating would become a struggle and thankfully not at all.

Next week will be interesting as Bianca starts her monthly Dex and some people find their kids don't cope well with school and Dex. But I've warned Bianca's teacher that things will most certainly be a bit different. I'm crossing fingers and hoping for the best.

Bianca has also now learned to swallow her 400 mg Aciclovir tablets. She can manage them when they are in 200 mg doses as the tablet is smaller, but the 400 mg one is much much bigger and we would usually cut this one in half. But the last few days she's been doing great with this huge tablet and swallowing it without it being cut. I have to say the pill swallowing kit that Kate, the most wonderful play specialist, put together for us has been the best thing ever!

Foreign territory

Today I became one of "those" parents. You know the kind whose kid acts up in public and can't seem to behave properly... Yes, that kind.

This morning I took Caitlyn to a Jumping Beans class. We decided that the time has come for Caitlyn to start doing some social activities. So we booked her in, I checked whether they would be prepared to distribute a note about Bianca and the risk of chickenpox to the class and so on.

When we got there, Caitlyn went crazy. She rushed from one activity to another and generally had the best time ever. Until it was time for us all to sit in a circle and do a structured activity. She wasn't interested in clapping her hands to the music, finding her ears, wiggling her fingers (usually at home we have no problems whatsoever), but today there was no way she wanted to sit still while there were so many other really fun things to do. So we had a few moments. It didn't get much better because at one point she bumped into another baby and then pretty much just got over-excited towards the end of the session.

All I could think about was when we used to take Bianca to Tumbling Tots - a very similar programme, there was a little boy whose dad must have been quite exhausted after each session. He was one little bundle of energy. So throughout the session all you would pretty much hear is (let's call him Jake - no reference to any Jakes attending Tumbling Tots) "No Jake" "Come here Jake" "You cannot go on that right now" "Sit still Jake" and I remember sitting there wondering why Jake wouldn't just listen. So there I was today doing the same thing and I wondered what all the other mums were thinking. But of course the last time Caitlyn went to any structured activities was before she can remember. Of course there is nothing wrong with Caitlyn's confidence, it is just the group activity that didn't really appeal to her. So sorry Jake, I can't say I knew your circumstances and was perhaps a bit too quick to judge.

Of course the session also once again reminded me how very different our lives are in comparison to other people. It isn't just as simple as arriving, having fun, having a chit-chat and leaving until the following week. Going to something like this does take an awful lot of energy, forcing ourselves to give up the safety of our house and swapping it for a situation that could possibly be risky. There is very much still the worry that if Caitlyn had to pick up chickenpox or measles or something like this, that this would put Bianca at risk. And really our only way to try and limit the risk is to distribute a note to other parents to ask them to let us know as soon as they notice any symptoms. So during the session it was discussed, but then instead of handing out the notes, they left it on the table thinking people would take one as they leave. This unfortunately didn't happen and we'll have to discuss this again next week, because it is important that people are able to phone us.

Today I had a question whether Bianca is busy building an immunity against these type of diseases. No she is not. As long as she is getting chemo treatment, her immunity will be suppresed. Now there is a chance that she may have retained some immunity, but we won't know until the end of her treatment when they will do a blood test that will tell us which diseases she still has immunity for and which she doesn't. There is also a chance that she didn't keep any immunity, in which case, she will have to get all her immunisations all over again. So until we reach that point, we have to treat all these diseases with extreme caution. Not only could they be quite serious for Bianca, but if she did become infected, then she will also put other oncology children at risk.

At school today, one of the teachers (I understand not her own teacher) accompanied Bianca's class to one of the physical activities and on the way to the hall, Bianca fell. This teacher expressed concern that Bianca may have done this on purpose to get out of the activity. I would be quite surprised if this was the case. Certainly Bianca has never deliberately done something like this just to get out of an activity and certainly nobody has told me that she wasn't too keen on doing this activity. So this evening I emailed her teacher and asked the circumstances i.e. was the path slippery, was she accidentally bumped, was it possibly on an uphill? I decided to email her a list of the likely side effects because I know that drugs like Vincristine could be the cause why kids could possibly not be as steady on their feet. Fair enough it is possible that Bianca might not be able to keep up with the class when they do physical activities, in which case she may not enjoy the activities and then maybe she might be trying to get out of the activities (but to hurt herself - I don't know). I noticed this afternooon as school was nearly finished, Bianca and her friend was asked to go to the office to collect something. So they both ran to the office and it wasn't long before her friend was way ahead of her. Bianca gave it her all, but she just couldn't keep up.

Sometimes I wish this journey was more straight-forward. This is foreign territory for us and certainly for the teachers as well. And it is quite hard getting your head around this. I have to admit it is not that easy knowing whether you are dealing with behaviour or side-effect and there is a worry that the side-effects could indeed lead to certain behaviour by the time the treatment is finished. After all, we are not just talking a few months, we are talking years.

409 days to go, 409 days to go - I cannot wait to get to September 2009 (although it will most certainly come with its own challenges).

'Hair' we go again...

Bianca is definitely losing some hair. It looks a bit patchy. I mean she still has hair, but there are definitely some spots with much less hair. I'm wondering why she would be losing her hair again. I know one of the side-effects of the Vincristine she gets once a month is that she would lose her hair, but I also thought that once she reached maintenance that was the end of "no hair". Would be interesting to find out from any other people who are on or done with maintenance for A.L.L., whether they had some hair loss as well. But either way, we'll be checking with her doctor, just to check.

Between yesterday and today Bianca has been complaining of a sore tummy. It doesn't seem to bother her too much, but every so often she will say "my tummy is sore". So we'll keep an eye on that one, when she was still on her Delayed Intensification phase, a sore tummy was the only indication of her having an infection - although she was also not really herself at the time.

Last night I got a bit of a fright when Bianca's temp went to 38.2 and of course that would just be my luck because I haven't packed a bag for just in case and above 38 means "go to hospital". But a few minutes after that it showed 36.5 (so false alarm - big sigh of relief!!!). Today she's been fine. Not a big appetite for lunch (but then she had a big breakfast) and otherwise she seems fine and whilst there are some minor cold symptoms at the moment, it doesn't seem to bother her and she seems to cope quite well with it. I'm really really glad!

Coughs, sneezes and a blocked nose

This morning Bianca had a few cold symptoms, and I asked her teacher to keep an eye on her. And as things go - at around 12pm Bianca had a slight fever (37.5). I was at school as they have assembly on Fridays around this time and parents are able to attend, so we agreed that they would take Bianca's temperature after assembly.

Assembly is really well done and each class gets a turn to participate in running the event. Not sure when Bianca's class will have a turn, but today was one of the junior classes. During assembly the headmistress introduced Bianca to the school and other teachers and reminded them about some of the important processes in place to keep Bianca safe.

When we took Bianca's temperature just after assembly - it was sitting at 37.4 and I decided to bring her home. Bianca was participating in her class activities, but she was quieter than usual, so it was better this way. Throughout the afternoon it fluctuated between 36.5 to probably around 37.2 or so, but luckily so far not higher than that. And I'm pretty sure this is as a result of the cold she has. Well, I'm pretty sure she has a cold - some coughs and sneezes and a blocked nose. Oh lucky us!

So now it is wait and see (and perhaps being on the safe side and have a bag packed just in case we'll have to stay in hospital).

I'm hoping the monthly IVIG transfusions will give Bianca a better chance to fight this cold.

Making the best decisions we can

This morning there was an article in the paper about parents who opt to freeze their daughters' eggs before cancer treatment in the hope that one day their children will have a better chance of having children.

I remember having this discussion with Doctor Anne last year on the 5th of June 2007. This was the first time Bianca went to theatre and she had a bone marrow biopsy and her first treatment and they managed to establish exactly what type of leukemia Bianca had. The day before we knew that Bianca had leukemia, but we didn't know what type, her prognosis or anything. So there we sat in this tiny little room. I knew we were going to have a meeting and I sat there with my little list of questions, one of which was Bianca's chance to have children. The answer to this: "we don't know". Unfortunately it is true that a side-effect of some of the chemo drugs is that it can cause infertility. A sad thought when your little girl is only 3.

The problem of course with Acute Lymphoblastic Leukemia is that you have to start treatment straightaway, you cannot sit and wait, so for us the important thing was to start treatment and then deal with side-effects later on. Of course Bianca was only 3 at the time and then I guess we'd have to ask how effective a procedure such as this would be for her? So in all honesty I can't say that it is a subject we researched to such an extent that we were able to make a decision. Our doctor wasn't able to assure us that it would be in Bianca's best interest or that it would guarantee or improve her chances. Then rather treat the cancer straightaway. In any case it wasn't as if we had weeks to look into different options or to research things like this, it wasn't as if we could get second opinions. It was pretty much like being pushed off a diving board - we had no choice but to move forward. And that's what we did. We didn't dwell on the "what ifs" We focused on now, on being positive, on making things as happy as possible for Bianca (and us).

I recently read a book called "Hannah's Gift" and the one thing I remember reading was where the doctor told them to always make the best decisions with the information you have at the time. In this journey there will be many times that we think "if only I did this or that or the other", "if only we didn't do this or that or the other". And of course many people from the sideline who will stand there and say "If it was me...".

And right now? Who knows what lies around the corner? Who knows what long term effects we will have to deal with? Who knows? We cannot choose the things that happen to us, we can only choose how we handle these things, and that's about all we can do, every day.

What's in a name?

When we chose a name for Bianca, Terence wanted to call her "Bianca" because it means "white" in Italian and of course with our surname being White he thought this would be perfect. I had to put my foot down when he suggested "Lily" as a middle name for Bianca - because Bianca Lily White would just be overdoing it. And with his sense of humour I had to endure suggestions such as "Snowy" (which drove me mad). I thought the combination of Bianca Marie White would go quite well until somebody pointed out that it would spell "BMW" and that was the end of that idea. So in the end Bianca became Bianca Leigh White.

And then with Caitlyn I insisted on choosing her name as Terence chose Bianca's name. So I chose Caitlyn (just because I always liked it) and Anne as a second name (because it goes quite well together) - no particular reason, I just liked it.

We didn't want to choose family names, but wanted our kids to have their own names.

I do find it amazing that some parents would give their children some obscure names that they would have to live with for the rest of their lives or names that nobody could ever pronounce. Of course celebrities do it all the time - take "Apple" for example. I wanted names that wouldn't become the object of ridicule, that would be easy to spell and pronounce.

So when I read this article I can only feel so sorry for these kids. Imagine being named: Number 16 Bus Shelter, Violence, Benson and Hedges (given to twins), or Talula Does The Hula From Hawaii.

Kia ora to you all!

It is Maori Language Week this week and so we'll start off by saying Kia ora!

Is it Thursday already? I can't believe that this week is going so very quickly and certainly our lives now have a slightly different routine. A good feeling though that things are pretty settled at the moment. Bianca seems to cope really well with each day at school and every day I ask her "what did you enjoy the most?" she would then answer "I loved it all". And the exciting bit - Bianca's already made 2 friends.

Of course in a bit more than a week we'll start with steroids and I've been warned that school and steroids don't really mix very well together. So it will be interesting to see how it goes.

It seems as if Bianca is losing some hair again. Not lots and lots, but certainly if I run my fingers through her hair then I see some hair in my hand and I also notice it on her school vest when I get her from school in the afternoons. So not too sure if this is thanks to the Vincristine or not. I'm really hoping she won't lose all her hair again. But this is probably just me being paranoid a bit...

Star of the day

Bianca had another great day at school. She loved it very much and felt so proud that she was awarded "Star of the day". So she got a little backpack filled with fun activities to do. We need to take this backpack back tomorrow so the next "Star of the day" could have a turn as well.

And she seems to be quite happy eating the stuff we pack in her lunch box (well most of it anyway). I guess in some respects peer pressure is a wonderful thing... So I'm really happy about this. I was worried that I would have to try and work around eating problems which might stretch my creativity just a bit...

We have reached the halfway mark in our treatment plan. I can't help thinking of the one Shrek movie where Shrek and Donkey have to rescue the princess. When they reach the bridge, Donkey is too scared to cross the bridge and tells Shrek "but I know that half is safe".

I guess it is a little bit like our journey - because we know where we've been, we can say "we know that half is safe". The truth is we don't really know what lies ahead for us. We can only hope that, with the knowledge we've gained so far, we are well enough prepared for the next 415 days. So here we go...

C, c is for clever cat

A big thank you for all the comments and messages for Bianca on her first day. It is so great to see the support out there, it really means a lot! So thank you!

A month or so ago we had no idea that we would be here today. At that point we had no idea when school was going to happen. But here we are and today was the big day.

All proud with her new school uniform and her bag on her back.

There were no tears from either of us. I think the excitement was too big. Bianca was so very excited, she wasn't even scared one bit. We got there and she chose a space for her bag.

Then she found her chair with her name on it.
And then it was time to say goodbye and "we'll see you when school is finished".

What felt weird was leaving her behind. Weird, because for the past year I've always been there, recording her journey, taking photos, sharing it with her. So it felt weird having to leave it to somebody else. It wasn't much different to when Bianca was still going to daycare before she got sick, but it still felt different. Not "sad different", but "oh, I'm not too sure what to do with myself" kind of different.

Shortly after, I got a call from the school - the lady who is responsible for administering any required medicines - and she assured me that she will make sure Bianca is well looked after and that she will make sure Bianca gets all her medicines that she needs during the day. So a big comfort that they are really treating this as a priority. I did try and make it as easy as possible, by writing out a schedule and putting as much information as possible about Bianca's medicines, temperature guidelines, our contact details and so on, but at the end of the day you still need somebody to treat this with the same importance as we are expected to. So it feels comforting that they seem very committed indeed.

When I got there at the end of the day, Bianca was all smiles and proudly declared "I think I'll go every day". I asked her what her favourite part was and she said "I loved everything". She apparently made 2 friends and she said "it was a boy and a girl, but I can't remember their names".

She told me how they all got stars, how they had to colour in some smiley faces and also learned "c, c is for clever cat".

Here she is all smiling and you can see the two star stickers on her vest. The stars are for children who try really hard to follow the school rules and be kind to others.

And then when we got home, we had to do homework. Some words and some reading. Just really basic stuff, but Bianca loved doing it and she loved the thought that she was able to "read" a whole book.

She has some words written on cards and then we are meant to put them into different sentence combinations and she did really really well with those.

The book is all about going to the beach and how people got up in the morning, then went out the house and into the car and so on. She can read all the pages in the book and I thought that I would write the single words "up", "out", "push", "stop" on a separate sheet and then ask her randomly to point to certain words. When I got to the word "push" she drew a car stuck in the mud (similar to the one in her book as she saw it), but she wasn't copying from the book, just what she remembered and then when I asked her which word was "push" she drew a little man pushing against the car. So I thought that was pretty cool. For now she is really interested in doing homework and I wonder how long the novelty will last. But for now - we'll just enjoy the moment.

Oteha Valley seems to be a really good school for Bianca. It is small and they seem really caring which is great and comforting to us! We also like that each teacher has their own page on the website and we get to find out what the kids are up to.

Tomorrow is the day

We can hardly believe it - tomorrow is the day! Tomorrow Bianca will start school. A whole new chapter for us. Bianca is so very excited and she can't wait. Click here to hear Bianca's side of the story.

Tomorrow I will join the thousands of other moms out there and pack Bianca's lunch box. The lunch box is, by the way, one of the most important things as far as Bianca is concerned. When you go to school, you have a lunch box and that is that!

No photos today, but we will add some tomorrow.

A day of exhibits, mirrors and things

So it seems as if the leg pain was just a one off. Thank goodness.

This morning we decided to visit Motat. We haven't been here before but it was a fascinating place and Bianca (and Terence) loved every minute of it. It had so many cool gadgets and things. Part of it was your usual museum type of displays about old fire trucks, different type of engines, a jean batten exhibit, but there were many other displays that were fully interactive such as the mirror maze, experimenting with sound, lights and so much more. Totally kid-friendly! Caitlyn was a bit young, but very much suitable for Bianca's age. And the area that I quite enjoyed was the Victorian village with little cottages that were set up like many many years ago. That was nice.

Terence and Bianca also went into the voyager exhibit. It is something that looks like a big space ship and then you sit inside and it moves along with a show and gives you a 3D experience. Bianca excitedly told me all about going up in the air and seeing space and even a dinosaur bone. She wasn't even scared!

The whisper dishes were fun where Terence would whisper something to the one dish and then Bianca could hear it on her side. The fancy term (as Terence told me) they are parabolic reflectors aimed at each other

Bianca loved it so much she wanted to just keep going and if it wasn't for Caitlyn feeling tired we would have probably stayed all the way until closing time.

I can see this is going to be one of those places we will go to quite often.

This is one of the old fire engines:

At the energy exhibition:

A display at the camera and recording exhibition:

Having fun inside the mirror maze:

Terence and Bianca finding out about strong wind at this exhibit:

Tonight Bianca was feeling all inspired and she was doing "experiments" in the bath by mixing some shampoo, body wash and bubble bath together. Terence asked her what her results of her experiments were and she said "well... it's all slimy and greeny". Well, there you go - that's what happens when you mix these "elements" together.

My little scientist girl!

Complaining of a sore leg

This morning Bianca woke up a little grumpy and complaining of a sore leg. So now we are just keeping an eye on it and hopefully it doesn't mean something bad and clears up by tomorrow. I'm really crossing fingers - I'm starting to enjoy "ordinary".

I also had to do a whopping list of blood tests this morning. Just routine. We've just enrolled at a new medical practice close to where we live and Caitlyn had to go for her 15 month vaccines. The locum sort of explained that they like their new patients to do full medicals or something to that effect - well not Caitlyn, but they wanted me to do the standard type of blood tests i.e. to check my cholestrol and so on. And of course I am pretty bad with needles so I cheated and used some Emla cream. Made a big difference.

At 2pm Bianca and I went to see Cinderella on Ice. It was really really good and Bianca was so excited. She kept saying "Cinderella is really pretty" and "the stepsisters are really mean". So it was a fun afternoon for the two of us.

Signing up for school

This morning was a very exciting day. We went to sign Bianca up for school.

When the headmistress asked Bianca her name, Bianca said "It's Bianca" and then promptly said "B-I-A-N-C-A".

We had a quick meeting to discuss Bianca's specific requirements. They have another leukemia patient in one of the junior classes so it's not a brand new situation for them. We feel comforted that they are sufficiently prepared to deal with our special situation.

We then had a look around. We saw the room where kids can wait if they are not feeling well. We saw the hall and Bianca enjoyed visiting the Library.

The big highlight for Bianca was seeing her classroom and meeting her teacher. And of course when you have a teacher, you have to give your teacher an apple.

Just outside Bianca's class is the play area for the little kids.

And of course then we had to sort out Bianca's uniform.

I think Bianca is just so so excited and cannot wait for Monday. Tonight she wanted to know if she will be going to school tomorrow and I had to explain that it is still another 4 sleeps.

A day of fun - what more do we need?

Yesterday Bianca and I spent some time at The Family place (CCF Auckland branch). They had an activity day and so we went along to see what it was all about.

Bianca had a great time playing with the toys and loved the craft activity.

She was so excited when one of the friends she recently met at camp also came to the activity day and Bianca's whole face lit up when Tui walked through the door.

One of the volunteer ladies brought the most fun game - a fishing game and Bianca absolutely loved this activity, but got a bit frustrated when she couldn't catch the fish as quickly as she wanted to.

Oh and Bianca got her face painted so that was just so so much fun for Bianca.

Victory!

We had a victory with Bianca's eating tonight. Okay I'm probably going to jinx myself for writing it here, but it was so cool! Bianca actually ate proper food - a meatball, some carrots, a small piece of lettuce, apple slices, a few grapes and a few blocks of cheese. Oh and some macaroni.

I couldn't believe it, but it really made my day! And Bianca feels just so proud of herself.

So fingers crossed this will be the start of good things to come.

Visit to the zoo

This afternoon we decided to visit the Auckland zoo. It was a great day and we felt comfortable that it is an outdoor activity which for us, feels more secure than an indoor activity where many more people could be sick.

On the way Bianca said that she felt hungry and it seemed her latest craving is hamburgers. But not just any, it has to be a bun with no sesame seeds, no sauce, no cheese, no tomato, just the bun, meat and lettuce. So Terence totally confused the people at Burger King.

It's been a very long time since we've been to the Auckland zoo, and we enjoyed it. It had the usual African animals and birds and of course monkeys.

We also quite enjoyed the Aussie enclosure.

And a big favourite was the enclosure with the cute little penguins.

The girls loved playing in the play area.

And of course we had to finish with a visit to the Kiwi Enclosure. We couldn't take any photos in this enclosure, but it was pretty cool to actually see a live kiwi. That was so cool!

Goodbye Dex... for this month at least

Yesterday morning was the last 2-and-a-quarter tablets of Dexamethasone for this month. Thank goodness! It's been a trying few days with Bianca being a bit more emotional, slightly more grumpy and having a bigger appetite. Well, the appetite was great - even though she craved specific things.

Earlier in the week Jody, Bianca, Caitlyn and I took the ferry from Devonport to Auckland city. It was a cold, but sunny day and so we took advantage of this. There is quite a nice view from Devonport of the city.

We visited the Sky Tower. Some people are brave enough and they "jump" from the outside, but we decided to just go up on the inside. We saw the most magnificent views of Auckland.

Bianca saw "the Sky Tower" and "Rainbow Girl". She absolutely loved meeting them!

On the way back to the Ferry, Bianca saw a guy who stood really really still and when you give him some coins he would move or smile (or both). Bianca was so fascinated by him.

And of course I just had to show the All Black merchandise store to Jody:

Camp Quality

As you all know Bianca went on Camp Quality on the 4th - 6th of July. She was so excited and kept asking "is it time yet?" I had to drop Bianca off at the Botanical Gardens and we were a bit early, but rather early than late and it was a good thing because Bianca fell asleep on the way and it was good just to let her have a rest.

Bianca had a companion who looked after her the whole weekend. Bianca's companion was Meriane and I have to say she was the perfect companion for Bianca.

Just prior to getting on the bus, Bianca was a bit shy, but soon lightened up when I suggested she chose a seat on the bus.

The theme for the weekend was "jungle" and we packed a lion costume for Bianca. They said Bianca looked so cute with the costume especially once they painted her face.

Bianca told me she saw a gorilla and got a bit of a fright until she realised it was just somebody dressed up as a gorilla.

Smiley (?) was a big hit with the kids and he was one of Bianca's favourite people at camp.

I understand they did lots of fun things and Bianca fitted in really well.

She even made 3 little friends. I am so pleased she had the opportunity to go. Thank you to all the volunteers and sponsors and everybody involved for making this possible for my little girl and for giving her a chance just to be a regular kid for a little bit. Thank you so much. We can't wait for the next camp!!!

One last hug to say thank you to Meriane (and thanks to Meriane and others for taking lots of photos of Bianca at camp!):