Meeting interesting people

On Saturday night we discovered our hot water cylinder stopped working. So we phoned the landlord / owner who assured us that he would phone a plumber the next morning. Always our luck, these things happen at the most inconvenient times - never on a week day between 9am and 5pm, always on a weekend late at night. So this morning we found out that the cylinder itself is perfectly fine, but that the hot water cylinder runs on a different electrical line than the rest of the house and with the recent wet weather, some lines were affected (including this one) - lucky us... So basically nothing more to do than wait for it to be restored, which thankfully it did later in the day.

So apart from sorting out our hot water problem, we pretty much just took it easy this weekend. After all on Friday we had more than enough excitement to last us for a while.

We went to the Takapuna library as they have a bigger collection than the Albany library close to us and we are able to borrow books from all the North Shore libraries (up to 35 books). Caitlyn enjoyed exploring the kiddies section where they had some toys to keep the children busy and Bianca looked for some books for herself.

Then tonight we went to De Fontein (in Mission Bay, Auckland) where we saw Chris Melville in action and had a chance to meet him. Terence worked with Chris' mum in Wellington and it's a great opportunity for us to meet some people here in Auckland. Chris is a photographer, but is also a member of The Grand Central Band and on Sundays he plays at De Fontein too. I've always been interested in photography (although I'm not very good at all), so it's pretty cool meeting somebody who is actually working in this field. We really enjoyed meeting him, and the performance was really good, Chris has a really nice voice.

Tomorrow is exactly a week until Bianca's very first appointment at Starship. It is a bit scary not knowing exactly what to expect and how they do things here, but no doubt we will find out really quickly. Of course I'm excited too because I've heard really good things about Starship.

Bianca is extremely excited about camp. The letter inviting Bianca (as well as all the paperwork we need to complete) arrived yesterday . It was a bit of a last minute situation, but they had space and so we really want Bianca to go. She asked me to read the letter to her probably around 3 times. It is a jungle theme and so she'll need a costume or a mask or something that will make her look like an animal. So we'll spend this week getting ready. Camp is on Friday and they will all be back on Sunday.


Starting the weekend with a bang

Today Jody, Bianca, Caitlyn and I were in a car accident. No serious injuries, but we were on the motorway on our way to the city and even though the speed limit was at 100 km/h, we were driving no faster than 80 km/h because it was raining and the road was pretty wet and Auckland does have quite a bit of traffic. Unfortunately the car in front of us must have slowed down quickly and I tried to break, but breaking and wet roads - they don't really go together and I could feel us sliding until we bumped into the car in front of us and were then bumped from behind by another car, which pushed us back into the car in front of us. Jody is a bit sore, but not seriously injured and my back is a little sore too, but other than that we are all fine. So our weekend started with a "bang".

It wasn't really how I planned to start the weekend, and even though I seriously could have done without this incident I do feel proud that in the past 11 or 12 years that I have been driving I have never before ever been involved in a car crash, to date I've never even ever had a speeding ticket or a parking ticket - so I've been doing pretty well (until today).

So now in the next week we'll have to see what the insurance have to say and so on - that will be fun (not...).


Fruit on a hat...

Bianca has quite a good appetite at the moment. Well, she is still a fussy eater (we're trying to convince her that once you are 5 you get to try new things, but so far she hasn't really fallen for it), but at least she is eating. It is weird though because she is not on Dex at the moment and usually Dex is the one that would give her an appetite.

Today she noticed the fruit bowl on the kitchen counter and she asked:

"Is that a fruit bowl?"
"Yes it is"
"Can I put some fruit on a hat?"

I'm trying to think which show Bianca might have watched or which book showed a picture of a hat with fruit on it.

I am also really excited for Bianca. There is a Junior Mini Camp happening for oncology kids really soon and it is for kids from 5 and up. Each area has their own camps and things and so I am so happy that we came just in time for this one. I spoke to Jo from Wellington Hospital just to confirm that it should be fine for Bianca to go and she said "absolutely". We haven't yet met the Starship doctors so I thought it best to phone Jo. That means that for a weekend Bianca will stay somewhere with other kids and although it will be pretty hard to let her go off on her own, it is so very exciting for her. She is quite excited too at the thought of going on the camp and told her dad "in 8 sleeps, when the sleeps are done I'm going to a camp without you guys". But we'll keep explaining that we won't be there, so hopefully it won't start off traumatic! Thank you to Hannah (Laura's mum) for sharing the info with me. So fingers crossed no complications, illness or any other unplanned things. I really want Bianca to go and I think she will have the best time ever!!!


The challenges of winter

This morning we managed to take the kids to the park. The past few days the weather hasn't been the best and this morning it was sunny. I do suspect it will be raining a little bit later on, so it was great just to get out of the house for a little bit.

I have to admit that I enjoy the way things are now. It feels pretty ordinary and that's great.

But I guess things will become harder as we go into winter. It tends to rain a lot here and of course winter walks hand in hand with colds and flu and lots of other bugs, so we will be a bit limited in things we would actually be able to do with Bianca and places we would be able to go to, as we do have to try and limit her exposure to people displaying obvious signs of illness.

That's where it becomes tricky meeting people or inviting people over or going to visit people - it always has to come with a "as long as there are no signs of illness" and more often than not unfortunately somebody has a runny nose or a cough and the visit has to be postponed. As I said before no matter which way you look at it it is always isolated - either we take many more risks, Bianca becomes ill and has to be isolated or we isolate her more to prevent her becoming ill.

Sometimes I wonder what things will look like when we are all done with treatment - will I have become this totally neurotic and overprotective mother or will I be able to relax and not care too much if Bianca gets a runny nose or a bruise or two (and the same for Caitlyn)? For over 2 years we would have been totally zoned in and focused on things like signs of illness, the possibility of picking up bugs, that swimming pools need to be avoided and so on, so it's like adopting a whole new lifestyle. But that's still many months away before we reach the end of treatment and for now, we'll just "protect" ourselves within the boundaries that this illness has set for us. At least it does feel pro-active, that we are actively doing something and at least it does feel safe, because as long as we actively treat the cancer, Bianca has a good chance to recover fully!

Last night Terence did a magic trick with a coin. One of those where he puts it in his hand, asks Bianca to blow and then it disappeared just for him to find it behind her ear or her head or under her arm or wherever. She was totally fascinated and asked him to do it over and over and over again. I love this age!

Terence started work on Monday and so far so good. The bus ride does take a bit longer than his train ride used to take, but it is easy enough so no complaints there.

And other than that we are still very much unpacking boxes.


Looking closely...

Despite, the non-so-positive start in our "new" rental home (well it's not quite home yet), we've managed to do a bit of sight-seeing which was quite nice. Terence and I can remember some of the sights from when we stayed in Auckland a couple of years ago, but Bianca doesn't remember anything and Jody has never been here.

Browns Bay is a really nice, relaxing kind of area. The beach is really nice and it has a wonderful park for the kids.

The weather hasn't been the best and so our sight-seeing has been a bit limited.

Really close to our house we are able to watch some Pukeko birds as they walk past every so often. I've never seen these birds in real life before (except in art work and on greeting cards) and so this has been quite fascinating.

Today, I got a call from the local CCF offices and Bianca and I will get to meet them on the 7th of July when we go in for Bianca's monthly hospital visit and treatment. It sounds as if on the 9th they will have a craft morning for the kids and I think Bianca will be so excited to go.

At the moment she is a bit on the lonely side because we haven't been able to start making friends (with kids), but hopefully soon we'll be able to catch up with some people.

I'm also torn between wanting to send Bianca to school in the next term and wanting to keep her home to limit her exposure to things like chickenpox. In one way I know that there are other oncology kids who go to school and for most of it they seem fine, but we've had a really rough time until not so long ago with hospital admissions and one infection after another. So it is a tough situation.

When you look at Bianca, she seems fine. She has a head full of hair (still short, but definitely growing), she seems to have lots of energy and is even interested in eating (although is pretty fussy, but lots of other kids are too). So sometimes (when she is like this) it is easy to want to forget that she is still sick, that she will still get treatment for the next 15 months, that she is still at risk of picking up some or the other dreaded disease, that the daily medicines can make her counts drop which would then put her at greater risk.

For most of it, Bianca is happy, but sometimes when you look closely, you realise how lonely, isolated and boring her life has become to some extent. We try hard though to make life as normal as possible, but to date it has been a challenge setting up play dates with her friends, either because she hasn't been well enough or they haven't been well enough. And finding suitable activities is also a bit of a challenge because it is so hard to control things like chickenpox exposure.

The Christchurch doctors are not very keen that Bianca starts school just yet. So I will discuss with the Auckland doctors and see what they say. I'm hopeful that they will continue the IVIG transfusions (I do believe that it is because of these transfusions that Bianca has been so well) and maybe if she keeps getting these, she will be fine to start school. So we'll see.

As always, we need to just take one step at a time. At least (thankfully) Bianca is not isolated anymore and so when we go to hospital on the 7th she'll actually be able to play in the play room and mix with some of the other kids.

Not really a great start

Right now our house is still full of boxes. We came with the best of intentions to start unpacking as much as possible immediately, but after we received the keys and did the inspection to make sure all visible faults were recorded, we were left to get settled into our "new" home.

The little bit of concern we then got was when we suddenly noticed that none of the carpets were vacuumed. So that basically tells us the carpets were not commercially cleaned by the previous tenants or the owners. Our contract specifically states that we need to "commercially clean" the carpets when we leave at the end of our tenancy so I sort of assumed that it would be done before we moved in, but I guess not.

And then to top it all, we would then discover that the cupboards, showers and drawers were all in a terrible condition and it took me around 2 hours just to clean the kitchen before I was able to start packing stuff into it.

Jody managed to clean the shower that she would mainly use. All of the showers had soap scum all over and the previous tenants were kind enough to leave their used soap for us.

And needless to say I felt pretty disgusted when I opened some of the drawers in the second bathroom.

So I ended up cleaning the bath for the kids and we all used the shower that Jody cleaned.

We knew we were going to meet with the owners on the Sunday and so we wanted to request that they send somebody to help us with some of the cleaning, which as far as we were concerned should have been done prior to us moving in.

Sunday morning and our day started with a leak in the ceiling right by the front door. The owners confirmed that they knew about the leak, but that it was fixed and they would get the builder to come and have another look. And thankfully they arranged with a cleaning company to come and give us a hand.

It seems as if the carpets will end up being our responsibility (because this cleaning lady wasn't equipped to clean carpets and no further word about this from the owners), but at least she managed to clean all the bathrooms as well as pick up all the cigarette buds that lined the outside area (which the previous tenant kindly left for us). She did a great job and just before she left pointed out that the one shower door doesn't close properly and that the one toilet is blocked.

So we had to phone the owner again. "Sure, he will get the builder to have a look at the shower door, but the toilet was definitely not blocked before we moved in - he personally put toilet duck (or something) in the toilet and it flushed just fine. Do we have a plunger? Well, no, we've never had to use a plunger". Interesting. We've only been in this house since Friday and my kids certainly did not stuff anything into the toilet so I'm not quite sure how we could be responsible for this. At least he agreed to ask the builder to bring a plunger and take a look.

So we didn't have a great start in this house and I guess it will take a little while longer before we will really feel that this is "home". Certainly we've had more space in the other house and we've never actually moved into a place that was left as dirty as this one. What makes it more difficult is that Terence has asthma symptoms, Bianca is at risk of picking up some or the other horrible disease if her levels are just a bit too low and Caitlyn plays a lot on the carpets where she will easily pick something up and stick it into her mouth. So it is pretty important that our house has to be at least a little bit clean.

But I guess I will learn from this and in future make a list of everything I want done before we move in and make sure it is written in the contract - I will even flush all the toilets and make sure they are not blocked before the time.

A little bit about Taupo

On the way to Taupo, we stopped off at Gravity Canyon where Jody and Terence did the Flying Fox (travelling at 160 km/h).

Bianca, Caitlyn and I waited for them and Bianca discovered a ladybug.

The Taupo break was great! It's been a long while since Terence and I had a real holiday and so it felt really weird not having to do anything.

We stayed at the Sunshine Lodge - the CCF Holiday Home that was generously sponsored by The Professionals. It was well set-up with everything we needed so that was great. It had a big lawn area with a really nice playground for the kids and when we arrived, Bianca couldn't wait to get out of the car to try out the trampoline.

Bianca discovered a big toy dog and she "adopted" him for the week. She would carry him with her around the house and every so often she would say "good boy!"
We did a few things during our week there:

Terence, Bianca and Jody went on the Huka Falls jet boats. Bianca loved it.

Caitlyn and I waited for them to finish and just then a group of Japanese tourists walked past and were so fascinated by Caitlyn, they all wanted photos taken with her. So my little 16 month old is a little celebrity...

We also went to the Prawn Farm and I was the first to catch a prawn. Terence insisted on going back and finally caught one too.

Puzzleworld was nice too. It mostly has puzzles, but there are a few other activities which we enjoyed. Bianca loved doing the remote control boats and especially loved crashing into Terence's boat.

Jody and I went to Wairakei Terraces where we had a Maori Cultural Experience. It was really fascinating and great fun.

Jody and I visited a glass factory where we could watch as the guy made a platter.

The whole week I felt a bit worried that Bianca would develop a cold or something. Just before we moved from Wellington, I picked up a cold, which Terence caught and then shortly after that Caitlyn had some cold symptoms. So when the end of the week came and Bianca was still fine, I was so so glad. I guess it all counted in her favour - the IVIG she got at her last hospital treatment as well as her good counts at the moment.

For me the best part of this break was that for a short little bit we could "escape" reality to some extent and just "forget" that Bianca is still sick. She was having so much fun and just being a normal 5 year old. But of course there is the constant little reminders like the fact that Bianca's medicine schedule still needed to be followed, but for most of it, it felt like we were just like any other family having a holiday. Thank you so much to the Child Cancer Foundation and The Professionals for making this possible for us.

Getting settled in Auckland

We are not quite up and running yet, but we have arrived in Auckland and now begins the big job of having to unpack and trying to make the "new" rental house "home". Bianca loves her new room and it is a little bit bigger than the one she had before.

This weekend we spent some of the time just driving around a bit, visiting the Brown's Bay beach and joining the Albany library. So many things bring back memories for Terence and I about the time we lived in Auckland a couple of years ago before moving to Wellington. Little did we know then that we would again move to Auckland, but with a very different purpose.

Bianca is doing really well at the moment and we are crossing our fingers that our days of many infections are well and truly over and that she can settle into the maintenance phase. Certainly the last little while felt wonderfully "normal" and Bianca has just been a normal little kid. In one way I do feel that the monthly IVIG transfusions contributed to this and I'm wondering if the doctors at Starship will continue with these or not. If not, then it will be interesting to see if Bianca continues doing well or not. Bianca's first appointment at Starship will be on the 7th of July.

This morning Terence will try the bus system in Auckland on his way to the offices in Newmarket. Terence has his first day in the Auckland offices.


Happy birthday Bianca!

Miss Bianca Leigh White turned 5 today and in her world (and ours), 5 is a very important age indeed. Unfortunately the one milestone she's been looking forward to so much for such a long time will not happen right now – she won't be starting school along with all the other 5 year olds because her doctors feel very strongly that it would be best health-wise for her to wait at least for winter and spring to pass before we consider sending her to school. So we do feel a bit sad about that. For a while now things have been going great, so it was a harsh reminder that no matter how good it all seems right now, our battle is nowhere near won and we are very much still on the battlefield. But there are lots to be thankful for, so we really can't complain too much.

Bianca wanted breakfast in bed and so this was how her day started. When we woke her up, her first reaction was “but I'm still tired” and she promptly turned around and went back to sleep (well, for the next 5 minutes or so).

And then time for presents and cake!

After the morning festivities, Terence, Bianca, Caitlyn and I set off for the Huka Prawn Farm. That was great fun.

We went for a tour to see and feed baby prawns and then took a bit of a walk to see all the different ponds.

Then we had the opportunity to fish for prawns. I was lucky and managed to catch a biggish prawn which the restaurant then cooked for us. Unfortunately Bianca and Terence weren't as lucky, but they had fun nonetheless.

All in all a wonderful memorable day for all of us!

We are still in Taupo (which tonight I was told is pronounced “toe-paw”) until Friday morning when we drive through to Auckland and in the meantime we are just having a nice break – but more on this a little later!

I can't believe my little girl is growing up so fast!!!


Crunch time...

Today Caitlyn was way better. She had a morning nap and wasn't as unsettled as yesterday so I got a whole lot more done. Not as much as I wanted to, because I now definitely have a cold and so didn't feel very good today at all. So now I'm crossing fingers and saying lots of prayers that it passes quickly and that the IVIG Bianca received on Monday and her good counts will be enough to prevent her picking up any bugs. I so so do not want Bianca to be admitted again. But we'll cross that bridge when we get there. I think we've had our fair share of hospital admissions after having spent 106 days to date as an inpatient at Wellington Hospital.

For now it is crunch time - we have to pack up all the final bits and it's funny how the last few things always seem to take the longest. Tomorrow morning at 8:30 the movers will arrive, then we will hopefully have the house cleaned by the time the movers are done. Then we will set off for Palmerston North where we will stay the night before leaving for Taupo.

We are so very excited for the next few days. Terence and I (and of course Jody) have never been to Taupo before and this break is exactly what we all need before arriving in Auckland and to start this new chapter.


Packing, packing, packing

Tonight I am quite exhausted. Packing for our move turned out to be a pretty hard job, but one that has to be done. Well, it was partly our own fault that it turned out hard because we had so many boxes left over from when we moved into this house last year which I never got round to sorting out and you never realise just how much junk you accumulate until you have to pack up. Of course what makes this move a little more tricky is that I am competing with a 1 year old. Caitlyn loves to help... unpacking that is. And I think she is feeling a little unsettled with everything happening so she's been really clingy today and did not want any naps. And I found it is virtually impossible to negotiate with a baby.

I've actually done pretty well with clearing out things that are rubbish or could be recycled or given away, so feel really proud of myself. But now with Friday morning just around the corner, we will start making "miscellaneous" boxes titled "odds and ends" or "stuff" otherwise we will just run out of time. Oh well, we did our best and now we'll just focus on getting the last things all packed and ready for the movers who will arrive on Friday morning at around 8:30.

As I suspected they upped Bianca's chemo dose to 75%. So now we are armed with enough Acyclovir, Co-trimoxazole, rubber gloves, syringes, disposable cups, straws (to help Bianca swallow her tablets), a medicine schedule, a letter in case we need to see a doctor when we are in Taupo, a copy of the letter sent to Starship and sufficient chemo to see us through until we get to Auckland for our next hospital visit.

And to top it all, it feels as if I will be getting a cold soon. I'm praying really really hard it doesn't turn out to be because I am so looking forward to our break in Taupo before we arrive in Auckland and the last thing I would want now is for Bianca to get sick. We've been lucky that the Child Cancer Foundation holiday home (generously made available by The Professionals) in Taupo was available for this coming week, so it will be a nice break before arriving in Auckland and having to unpack and organise the new house. We haven't had a family holiday in a really long time and of course won't for the next while so we are very very excited about this break!


Thank you and goodbye to some wonderful people

Today was our very very last hospital visit at Wellington hospital. So it was once again a time to say thank you so very much and goodbye to some wonderful people we met the past year. Watch our tribute here (you will need sound).

Bianca was so excited to go to the hospital. Finally Bianca was allowed in Ward 18 again. I guess they feel fairly certain that the shingles won't suddenly come back again and for now Bianca is still off Dexamethasone and still on oral Acyclovir every single day. So she had a great time playing with the different toys in the day room.

Time for a quick check-up.

Today was a bit of a long visit and after the quick check-up, Bianca received an IVIG transfusion as well as her IV Vincristine. I'm happy they are still doing these IVIG transfusions and we suspect that she has been pretty well since she's been getting these to help her fight infections. At the last visit, there were talks that the blood bank suggested Bianca wouldn't need to continue getting these, but I guess it will come down to whether Bianca is well because of the IVIG or whether she is finally getting settled with her maintenance treatment. And certainly if it is as a result of the IVIG transfusions, then I would really like for them to continue. I mean after 106 days spent in hospital as an in-patient, I would say we've had our fair share...

Bianca's counts are great at the moment, but she is for now still on 50% dose oral chemo. Jo was going to confirm this with Christchurch during their video conference, but for some reason the Christchurch doctors couldn't make the video conference. We will get feedback tomorrow, but I suspect the dose will be increased. It doesn't matter too much even though her counts will definitely drop a bit (but then that is the aim so that they can keep her counts at a certain level) and of course we will have to get used to the new dosages that we will have to give every night.

So all in all today Bianca received 3 different chemo drugs, her oral Acyclovir (400mg, 4 times a day) and a blood product transfusion.

Then it was time to go home and one final goodbye to Jo.

On the way home we quickly went to the CCF offices to also say goodbye there. Today was a great day treatment-wise, but a very difficult day as it is never easy to say goodbye to people who mean a lot to you. We never thought we would ever meet these people, but since Bianca became sick, we couldn't have asked for better people to walk this journey with us. These people not only became our friends, but they also became our family! We will miss them so much!!

This little photo montage is our tribute to them and features some of the wonderful people we met the past year and thanks to them we will be able to take some great memories on the road forward! Thank you for caring for our little girl and for making her smile!


The one thing Terence really wants to be is blonde. Well, last night his dream came true - all thanks to Jody who helped transform him.

Before it all started...

It's all happening...

And the result...

No it's not just the light, it really does have a shade of yellow to it...


At least Dex was good for one thing...

I never thought I'd say this, but I'm actually missing the steroids. Despite all its horrible side-effects, the steroids are great for increasing Bianca's appetite and the last little while we've really been battling with her appetite. She eats really well at breakfast but then her appetite decreases as the day goes by and she's craving certain foods, until we give it to her, when she suddenly doesn't feel like it anymore. Even her favourite foods don't appeal to her at the moment. So in desperation tonight we've started giving her ProNutro and even though it is a breakfast cereal, it is at least healthy so then it doesn't matter too much if she is fussy or not and best of all she really likes it. All I can hope for is that when the treatment is all finished, Bianca's appetite will become normal again and until then we just won't make too big a fuss so that she doesn't start hating meal times.

Yesterday it looked like Bianca was on her way to developing a tummy bug. Please not!!! So I was really glad today that she seemed perfectly fine and so far no temperatures. She seemed a bit more down this morning, but soon enough she became her old self again - all energetic and playful. Of course tonight we noticed she's got a rash on her bottom and her port area looks a bit red. So it will be interesting to see what they say at the hospital tomorrow when we go in for her monthly visit. Fingers crossed nothing to worry about!


Counting down

Today I would like to say thank you so much for all the support out there. All the comments, emails, thoughts and prayers mean so much to us and help us stay focused and gain strength. Without all the support, this journey would have been very alone and very hard. So thank you!

Last night I went to the monthly CCF meeting. It is a meeting where the business manager meets with parents. This meeting gives parents the opportunity to ask questions, to share concerns and to discuss suggestions and it gives the business manager the opportunity to give updates and to make sure that parents are well informed. It was a very positive meeting last night and I think good things are on the horizon. Of course as with many things in life, things won't happen overnight, but it gives a sense of comfort that people are working towards great things. And even though we are on our way to Auckland, it was good to get the latest updates.

Speaking of Auckland, we are now in countdown mode. And suddenly I realised that tomorrow in one week the movers will arrive. I feel very excited about the new opportunities and about what lies ahead, but at the same time I do feel incredibly sad that we will leave behind some wonderful people we have met, worked with, formed friendships with.

So the next week will be a week of "lasts", the closing of one chapter before starting our new chapter, and even though we don't quite know what it will bring with it, we feel certain that we are ready for whatever comes along...


1 Year anniversary

Today (4 June 2008) marks the 1 year anniversary of the day Bianca was diagnosed.

4 June 2007, was a devastating day to us. Terence was with Bianca at hospital and when I arrived a bit later with Caitlyn he took me aside to tell me that she had leukemia. I remember standing in the corridor staring at the wall trying really really hard not to cry. No parent ever wants to hear that their child has leukemia.

Looking back I can honestly say that it has been the hardest thing we've ever had to do, cancer and easy don't belong in the same sentence. But despite the challenges and despite the difficulties, the devastation - it is a process that became manageable. And with "manageable" you take back some of the control, you start understanding what you are dealing with and what you need to do.

Way back then we made the decision that we would be as positive as possible. I certainly did not want to look back on the journey and only remember feeling sad. I wanted us to be happy, to smile and to have fun. I wanted Bianca to have some good memories.

When I look back over the past year we've absolutely achieved being happy, to smile and to have fun. Yes, we are dealing with cancer, but we don't have to give up living just because Bianca has cancer. And so we embrace each day we have and try to enjoy it as much as we can.

Bianca achieved so much this past year:
  • Spent approx. 106 days as an inpatient in hospital with various admissions.
  • Spent around 78 days in an isolation room for either an admission, check-up or receiving treatment.
  • Had around 54 different tests such as X-Rays, CT-Scans and so on.
  • Had around 31 unusual things happening.
  • Received around 26 blood product transfusions (red blood cells, platelets and plasma).
  • Had around 214 days of chemotherapy
  • Had around 74 days receiving steroids
  • Received around 89 pokes where she received an injection, finger prick or had her port accessed, including 9 injections into her leg muscles.
  • Had a nose tube (NG tube) inserted 4 times.
  • Lost her hair twice.
  • Had 4 bone marrow aspirates.
  • Received approx. 13 lumbar punctures / spinal taps.
Bianca also had:
  • Kidney stones.
  • Shingles (which flared up several times) which now requires oral Acyclovir tablets taken 4 times a day every day.
  • An unknown viral infection which required admission of around 34 days mostly in isolation and on oxygen.
  • Pneumonia.
  • A broncospasm that required immediate assistance.
  • She was diagnosed with panhypogammaglobulinaemia.
  • And of course she had to learn to swallow tablets as she has to take all her daily oral chemotherapy in tablet form and it is not recommended that she chews them.
And through all of this Bianca remained happy, smiling and not once asking "why me?" She accepts what has to happen and she makes us so very proud. She is a true inspiration. I put together a little photo montage to share with you the courage and bravery of my little girl! Click here.

Bianca will still get treatment until September 2009.


Ordinary Days

Tomorrow will be really really exciting. Bianca will have a play date with one of her best friends from hospital - Elijah. She's been asking for 2 days when Elijah is coming.

On Friday we finally got the approval from the Christchurch doctor that Bianca would be allowed to be around other oncology kids again. I had visions that for the next 15 months Bianca would have to be isolated each time she visited the hospital as they waited to see if the shingles would return or not. Thank goodness the shingles have so far stayed away.

So tomorrow will be a great day for Bianca.

Bianca is doing pretty well at the moment. Doctor Sullivan indicated that it is uncertain whether she is really just settling or whether it is the IVIG transfusions she's been getting. But either way I am really happy that she is doing well at the moment. It's been great being at home and just doing pretty ordinary stuff (as much as is possible). And especially this close to our move to Auckland, I really just want everything to go as planned.


A very scary day!

The 2nd of June 2007 was on a Saturday. And unlike today it wasn't raining. We had plans to go out and do things, after Bianca came back from Kenepuru Hospital. A couple of weeks prior to the 2nd of June 2007, Bianca developed tonisillitis. We were glad to see the end of that as it was the worst Bianca was ever sick in her whole life and we thought those 2 weeks would just not end. She was clingy, emotional, had no appetite and it was challenging as Caitlyn was just over 3 months old.

On the 31st of May I discovered a swollen lymph node at the back of Bianca's head under her hair as I was tying up her hair for ballet. As it was 4pm I knew that we wouldn't be able to get a GP appointment for the following day and so we decided to take her to Kenepuru Hospital A&E to let them have a look at her.

So on the 2nd of June 2007, Terence took Bianca to Kenepuru in the morning and I remember doing dishes when they came back. I fully expected Terence to say, "oh it's nothing to worry about, it's just the last bits of the tonsillitis", but instead he said they were referred to Wellington Hospital and they were on their way.

That afternoon turned out to be never-ending as I waited and waited and waited. Finally Terence phoned to tell me that a blood test revealed low red blood cells and low platelets and that she was going to be admitted to the children's hospital and would need a blood transfusion. I asked him how long Bianca would have to stay and he indicated that it would have to be until the Tuesday as the Monday was a public holiday and they needed to do further tests. Wow that was a shock. "Well, can't she come home and we take her back on Tuesday?" "No, she has to stay"

I was supposed to pack boxes on this day (just as I was supposed to pack today), but instead I paced up and down and every few minutes sat at the computer and searched the internet for answers. And I prayed and prayed and prayed that it would just not be anything serious. I prayed that it would be something they can treat and cure. I was pretty freaked out and scared on this day.

Little did we know then just how significantly our lives would change...

A puppy for Bianca

We had a pretty relaxing weekend.

On Saturday Bianca, Jody and I visited a lady by the name of Juliette. Juliette invited us a while ago, but something always came up and finally on Saturday it happened. They have the most gorgeous two golden retrievers (Summer and Merlin) and although a bit scared, Bianca loved seeing the dogs and she took some presents for them too. When she was very certain that they wouldn't jump up, she gathered all her courage and stroked their backs.

Here is Summer chewing on Bianca's present:

Juliette and Crispin gave Bianca a present that she absolutely adores. It goes everywhere with her and even sleeps with her. It is a cute little toy puppy, all curled up in its basket and when you switch it on it looks like it is breathing. This totally made her day and will see her through until one day she will be able to have her own real pets. Thank you so much for making my little girl's day special!

A goodbye party

On Thursday we had a bit of a farewell gathering to say thank you and show our appreciation to the wonderful hospital staff at Wellington Hospital and the wonderful people at the Child Cancer Foundation.

These people played such a huge part in our lives. They were with us from Day 1 of this journey. Of course in an ideal life it would have been nice if we never had to meet these people and if Bianca didn't get sick, but we couldn't have asked for better people to look after Bianca.

Bianca with some of the great people who looked after her:

From left to right: Sue, Kate (Ward 18 play specialist), Bianca, Jo (Day Stay nurse), Megan (Ward 19 play specialist).

Unfortunately not many people could make it because of their shifts or other commitments, but our thanks also go out to them.

Our final day at Wellington Hospital will be on the 9th of June so we will get to say goodbye to the others who couldn't make the little party.

Bianca had a great time playing silly games with her friends and she felt so proud giving them each a little card she made as well as a little present to say thank you.

All in all it was just a great day! A sad day, but a great day!

A big thank you to Sally and Marg for helping me organise this and for letting us use The Family Place.

All the way from Canada

For the past month we've had Sandrea giving us a hand with the kids. Sandrea is from Malaysia and backpacking through New Zealand, so it worked out perfectly. Today is her very last day with us before she leaves for the South Island tomorrow morning. We always knew it would be a short stay, but we will miss her lots!

Last week, Jody arrived from Canada and she will be with us for around 6 months or so. She will move with us to Auckland. The kids spent quite a bit of time last week getting used to Jody and I am very pleased to see how comfortable they are with Jody.

At first I was very sceptical advertising for an au pair all by myself, but when the Swedish Agency treated us so badly and kept sending applications that had nothing to do with our requirements, we were left with no choice but to advertise by ourselves. What a good decision it turned out to be. We found both Sandrea and Jody and both seem perfect for our family. And best of all, we didn't have to pay any placement fee and monthly account fee to somebody else!

At this point the childcare is still very much a necessity for us. By keeping Caitlyn at home we are able to avoid her picking up some or the other horrible disease and passing it on to Bianca. Chickenpox especially is pretty bad, but something as "minor" as a cold could result in something more serious for Bianca too.

We had a stint last year where I had Caitlyn and Bianca together for 8 hours a day (for around 3 weeks) in an insolation room and that was really tough and exhausting and didn't do anything for Caitlyn's routine as she just wasn't sleeping at the hospital.

One thing about this journey is that we always have to have a backup plan for our backup plans, and as a family we've all had to make some sacrifices. So it is really important to us to give Caitlyn the stability, the extra attention and for her to be able to stick to her routines.

Having an au pair was one of the best decisions we have made!