Starting round 4 and the next set of 84 days...

We had an extremely long day today. The first day of our school holidays was marked by a hospital visit. It was a theatre day and so we had to wake Bianca earlier than usual to have breakfast and so Bianca stopped eating and drinking at 6am. We arrived at the hospital at 9am and did our blood test (finger prick) and as usual Bianca did great. While we waited for our clinic appointment we discovered the Ronald McDonald rooms. It is a great setup and it has a number of comfortable seats, a great kitchen area and they even have things like bread, coffee, tea, breakfast cereals and so on. They also have a number of rooms for families whose kids are in ICU. So a great setup.

As usual our clinic appointment was pretty much on time and today we saw one of the other doctors. Bianca decided that she would use the spray instead of the Emla Cream. Basically both numb the skin so that it doesn't hurt when they access her port. The spray is just instant and with the Emla we have to wait an hour for it to work. I was not 100% sure how comfortable Bianca really would be with the spray, but since she chose, we went with it and boy did it work great! Apart from being "freezing cold" as Bianca describes it, it was less effort than the Emla cream. Once accessed, Bianca got her Vincristine pushed into her port and then the IVIG transfusion (which took around 2.5 hours or so to run through). And then we waited, and waited, and waited.

Bianca was on the afternoon theatre list which usually starts at 1:30pm and then actual time of going to theatre depends on age and since Bianca is not the youngest anymore, we ended up being 5th on the list. But today seemed to be particularly slow and I understand they had a couple of Bone Marrow Aspirates in the morning which take longer than the usual Lumber Puncture. Eventually at 16:40 it was finally time for Bianca to go and by that time she was more than ready and she enthusiastically jumped up when we were called. By that time she's been complaining for several hours that she was hungry, that her tummy was sore, wanting to know when it would be her turn. After recovery (from getting her Lumbar Puncture and chemo injected into her spine) we had to wait a further hour before we were finally able to leave hospital at 18:30. It was one very very long day!

Bianca's counts are looking great and so (as per protocol of our clinical trial) they increased her weekly Methotrexate and in addition to this they have also increased Bianca's steroids (as she is a bit heavier than last month), so when we start tomorrow morning with steroids, it will be interesting to see the effects this time round. At the very least I am expecting Bianca to get hungrier than usual and not sleep as well as she should.


Trip down memory lane

And so as we are nearly at the end of September (wow, I can't believe how fast the year is going), we have now reached our daylight savings time and last night we all had to set our clocks one hour forward. I guess very soon it will become a bigger challenge getting Caitlyn and Bianca to sleep at night (even though they are in really good sleep routines), but very soon it will only get dark around 20:00 or 21:00 each night. It does have loads of advantages though!

I was busy unpacking some of the boxes and came across Bianca's very first set of discharge notes. The one from her admission on the 2nd of June 2007. Wow, what a trip down memory lane. I've been wondering what some of Bianca's blood levels were when she was first admitted and so it was great finding this discharge note. Of course way back then nothing made sense, but now I understand so much more, and so the information is much more meaningful.

I remember sitting in this little room with Doctor Anne and she talked about a lot of stuff. She mentioned neutrophils, but I had no idea how we would ever know these (didn't form the connection with neutrophils and blood results). I distinctly remember asking her about Bianca being allowed swimming, and that we got a definite no. And we signed loads of documents and had lots of reading material, but other than the words Acute Lymphoblastic Leukemia, we didn't know anything. It was only once we reached the next phase several weeks later that I suddenly realised that our initial documents contained our treatment plan, but initially I just drifted from one hospital appointment and blood test to another, week after week after week. And as much as some people expected us to understand everything within a matter of days and being able to answer complex questions, it simply wasn't like that. It just took us so long to truly understand what was busy happening. But I certainly am happy that I know much more now. I've never read more on any other subject than leukemia since.

I also came across the discharge note from when Bianca was admitted for 34 days with some or the other viral infection. They never really figured it out, but reading it now, she was pretty unwell during that time - of course I knew it then, but you sort of push those kind of memories to the back of your mind. She was on oxygen for most of that hospital stay.

And then the one from the day that Bianca reacted to her PEG shot (a chemo shot being administered into her leg). Her saturations dropped all the way to 79% and she required oxygen.

In hindsight our first 6 - 8 months were pretty hard. But we coped and somehow we managed. Of course we had the Child Cancer Foundation with us from day 1 and a number of people stayed in regular contact with their ordinary, normal news. That meant the world to us and still does. That people could just stay in touch with their own news. For us the first 6 - 8 months pretty much meant isolation and just to read about normal, ordinary stuff reminded us that there was a world outside the cancer world.

But it is great to be on Maintenance, even it it still means medicines and chemo every single day and hospital visits every single month. Just to be able to do some normal stuff, to feel more relaxed about going out. And last year this time, I wondered when we would ever experience normal again, but here we are, and look at us now. Of course I know how fast things can change, but while it is going well and things seem stable, then we enjoy it and take advantage of it.


A trip to Piha

Today (Saturday) we decided to take a drive out to Piha beach. We've only ever been there once before when Bianca was around 18 months old. Caitlyn wasn't too happy when she woke up this morning, not sure why, but she was grumpy and she let us know it! So we got everything ready for our drive and off we went (around an hour later than we initially planned).

Caitlyn didn't want to be strapped into her car seat and kept trying to take her arm out. I was sitting between the girls and I kept pushing her arm back and of course she screamed. And screamed, and screamed most of the way to Piha beach.

Piha beach is beautiful and has this nice black sand all over. It is not really a child friendly beach as it has bigger waves and quite a strong current and certainly it is here that you will often see surfers having fun in the water. Caitlyn loved having her feet in the water and she loved spotting some of the shells on the beach. Of course then it was time to go home and... Caitlyn screamed and screamed and screamed for most of the way home. When we got home Caitlyn had a nice long nap and woke up feeling much much better.

Unfortunately our camera fell into the water and we'll now try and get it serviced to try and see if we can fix any possible damage. So no photos of today's trip, but I thought I'd share some photos we took when we first went to Piha Beach and Bianca was around 18 months old:

PS. As I'm typing this Bianca has been spotting and reading some of the words. So I guess my days of writing stuff and Bianca doesn't know what I'm writing are over!


That little nagging voice...

So no further pain at the side where Bianca had shingles the last time. So maybe it really was just that she heard me discussing it with Terence? I'm really glad.

She's been falling quite regularly at school, usually when she plays or when they have fitness and it seems to be most days. So right now Bianca has a number of bruises on her legs. At least I know where the bruises are coming from because if I didn't know she fell at school, then I would start wondering (and worry) about these bruises and why so many? But that's Vincristine for you, all right! It has a habit of affecting reflexes and kids' ability to balance and walk and so on.

This afternoon Caitlyn was sitting on the couch next to Jody and suddenly she started crying a little bit, holding her foot. Her foot looked quite red and it seemed as if she sat on her foot which probably resulted in pins-and-needles. I tried remembering how I was told about the pins-and- needles sensation when I was little, I mean how would you describe it to a small child or how would they describe it to you? Not that Caitlyn would be able to anyway as she can't really talk as yet, but it just made me wonder.

Only 2 more days and then school holidays and Bianca officially completed her very first term at school. It still feels so unreal, just a couple of months ago we didn't think Bianca would be able to go to school as the doctor in Wellington wasn't too keen for her to start school, but she managed really well and apart from a relatively minor cold (slight runny nose and some coughing), it's been pretty good.

I do find myself feeling fairly paranoid at the moment. I guess with everything that happened in the first part of our treatment, I sort of feel as if this is almost the calm before the storm. It almost feels too good to be true that things are going well. It's been several months now that things are really stable, but experience taught me that things can happen suddenly, without warning and usually when you are not prepared. There is always this little nagging voice in the back of my mind telling me not to get too relaxed. But that is life for us. One moment you have this relaxed outlook on life, not caring about the odd high temperatures or runny noses, or coughs or bruises (I mean all kids get bruises, right?). And then the next your child is diagnosed with leukemia and you have to actively keep an eye on temperatures, a runny nose or a cough isn't just a simple thing anymore, it might be more, so yes, being paranoid is part of the job. I hate it though, I hate being paranoid and sometimes when I notice the odd bruise on Caitlyn's legs I feel my heart beating faster and I have to remind myself that there really is no need to worry, they are just bruises. But that's how it is, I'll always worry about bruises - after all that was one of our predominant signs (even though we didn't know it at the time and even though that wasn't what prompted us to take Bianca to the doctor).

Too big for school

Lea: "So Bianca, how was your day at school?"

Bianca: "It was fine"

Lea: "Who did you play with?"

Bianca: "I don't know" (she has many friends, but doesn't always know their names)

Lea: "Did you play with me?" (trick question)

Bianca: "No, you were not there"

Lea: "In that case, can I also go to school?"

Bianca: "No, you are too big"

Lea: "But Miss Hilton goes to school" (this is Bianca's teacher)

Bianca: "Yes, but you are all grown up"

Lea: "But Mrs Raubenheimer goes to school" (another teacher who has been there longer and is older)

Bianca: "Well, you're not a teacher"

Lea: "Can I be a teacher?"

Bianca: "No, you chose to be a Mommy, so there!"

That's decided then, end of discussion...


A different day

It was a slightly different day for us today in that Caitlyn slept for around 3 hours this afternoon and then when it was bedtime tonight went to bed without a fuss. So I'm not quite sure why she seems to be so tired. Bianca was also a little bit quieter than usual at school, although she seemed quite happy when we arrived home.

At one point I thought the spot where Bianca's shingles first appeared, seemed a bit red again, but it doesn't seem so red now. Terence (who is in Wellington at the moment) phoned and I told him about this and then after the call, Bianca indicated that the shingle-side of her head was a bit sore - so not sure if this is because she heard me tell Terence, or if it is really sore. Will have to keep an eye on it.

I sure hope that Bianca's shingles are not returning. I am not in the mood for another hospital stay and IV meds.


Bianca, the inventor...

Bianca was busy writing something and then Terence and I noticed that she took a feather (which came as part of a craft kit) and she stuck a little pencil tip to it. My little inventor designed a cool feather pencil to write with. Now if I was a Victorian Lady, I would have remembered one should never be boastful (as I've learned at the MOTAT Girl Power Day, but thankfully I'm not and I am now proudly showing off this little gadget:

Fairy Tale Fashion Parade

Last week, Bianca had a Fairy Tale Fashion Parade. This term they learned all about Fairy Tales and so to conclude the unit, the junior classes had the opportunity to dress up as their faviourte fairy tale character. Bianca chose The Little Red Riding Hood and she wore a reddish poncho my mom (her Ouma) made for her a while back and that she loves wearing.

We then took a little plastic container and taped a string to it for the handle and Bianca then wrote "basket" on a little card that we stuck to the front. Then we decided that she would draw some flowers, a cupcake and a bottle of juice and Bianca cut this out and put it in the basket and then she wrote a little note to Granny from Little Red Riding Hood (Dear Granny, Hope you feel better soon. Love Little Red Riding Hood).

It was so cute to see all the little kids all dressed up and there was even a girl dressed up as the beanstalk and another dressed as the talking mirror.

Bianca had lots and lots of fun!

Girl Power and a pink Cadillac!!!

On Sunday (today) we had a wonderfully fun day at MOTAT. It was a Girl Power themed day and it was so much fun. It was all about the way Victorian Women used to live and behave and they had a display to showcase the changes specifically relating to women that happened over the years. It was a celebration to the heritage of women.

So when we got there Bianca and I were just in time to attend an etiquette lesson where we were taught the proper way to behave when you joined somebody for tea. So we all had to wear these fancy white gloves and the lesson was held in the school room.

We were taught that proper behaviour was to wait for the hostess to sit down first before we were able to take our seats. These two ladies did a brilliant job at teaching us:

They taught us that we had to sit up straight, chin up, knees together and then we had to take off our gloves and lay them over our knees. We were taught it was horribly old fashioned to stick out our little fingers when holding ones tea cup and it has to be neatly tucked in. The proper way to drink ones tea is to take the saucer with the left hand, hold the tea cup (little finger neatly tucked in) with the right hand and bring it close to you (with your elbow staying by your side). You never ever lean across the table. And then you have to stir your tea in such a way that your spoon does not make a sound and then you have to drink your tea without making any sounds and place your cup softly back on the saucer.

Acceptable conversations for ladies would possibly be the weather, ones garden (but one should never be too boastful) and perhaps discussing the latest fashion (have you noticed how they are showing more ankle these days?) and it was frowned upon to discuss politics, ones neighbours or even worse any kind of bodily functions - that was simply not the proper way for ladies to behave. At the end of our lesson, our hostess signaled the end by gently placing her napkin back on the table.

Then of course Bianca had to go through the Mirror Maze (that is one of her favourite things at MOTAT) and all of the engines were working today and that was fun to watch how they worked.

Bianca pretending to be a bus driver (tickets please):

Caitlyn having fun at the playground:
We bought two pink goody bags full of a variety of stuff - magazines, notebook, highlighters, chocolates and so on and all of the proceeds go towards the Breast Cancer Foundation. So we thought this was a worthy cause to support.

Bianca and I got all dressed up in Victorian clothes and got our photo taken. Bianca found it quite funny that in those days people didn't smile when they got their photographs taken, so we both sat there with our serious faces on.

In the Victorian Village (which is an area at MOTAT where they have these cute little houses to show how people lived in the old days) they had some Victorian type of games set up (but we didn't have time to try them out) and they also sold some pink candyfloss, toffee apples, popcorn and lemonade.

We met Erin Simpson, one of the presenters from Sticky TV. She introduced herself to us as we waited for the parade to start. That is pretty cool, to actually meet somebody on TV and she is really nice and down-to-earth.

And then the highlight of today was the parade. Bianca was a "princess" and Bridgette, the event coordinator at MOTAT organised a special princess crown for Bianca to wear during the parade. Bianca then got to choose the car that she wanted to have a ride in and chose this beautiful pink Cadillac.

So there was Bianca riding in the front of a pink Cadillac right in front and several other cool cars following and they went all around MOTAT. Bianca proudly waved at everybody. Erin, the Sticky TV presenter was in the car right behind Bianca.

The lady who owns the Cadillac (Sharon) then gave Bianca and Caitlyn each a pink balloon and Bridgette gave Bianca a Girl Power t-shirt. Thank you Bridgette, for making Bianca's (and our) day really really special.

I have to say that MOTAT is definitely one of our favourite places to go to and it was a great conclusion to my birthday weekend.

Thank you for all the wonderful wishes I received including a telephone call from Verity (one of my very special friends from South Africa) as well as my mom - thank you very much, you made my day!

My birthday party

And so my birthday arrived, just about the same time as K-Mart started putting out their Christmas Trees on display. WHAT?! It is only September and they are already getting ready for Christmas!

I'm not really one to make a big fuss of my birthday, but we did have a small little party at home on Saturday (even though technically it wasn't yet my birthday) and that was so much fun. And yes, I included some fun stuff for the kids, because as far as they are concerned you simply cannot have a birthday without lots of balloons.

I was wonderfully spoiled with a chocolate cake that Terence and Bianca baked (and Terence insisted on putting the actual number of candles on my cake, which reminded me when my mom turned 36 my brother and I put 36 candles on her cake - not that I'm turning 36, not at all!).

And then we had what Bianca would call a "feast" which is basically a picnic style type of meal with lots of different things put out on different plates.

And then present time. I got an I-Pod from Terence, some chocolates and bubble bath from the girls, a beautiful necklace with a bright red heart that Bianca chose and paid for herself and a little golden chain with a little cross on it from my mom. I feel wonderfully spoiled and it was great sharing this day with the people closest to me (even though my mom is thousands of kilometers away, we chat regularly on email, so it does feel as if she is close to us).

And then I finished my day with a relaxing bath and watching a Gilmore Girls DVD. So all in all a great way to spend my birthday.

A week of thinking, what-ifs and tears

It was a funny week for me, the past week. Not ha-ha funny, but the type of week that made me think about a lot of stuff. It was a week where I realised how very quickly things can change, how one moment everything goes well, but the next things can change. It brought with it a lot of thoughts, memories of where we've been, a lot of "what-ifs" and "we really don't know what the road ahead of us looks like".

It's been an incredibly sad week as we got news from another family whose journey we've been following quite closely.

I wish there was something I could do and offer to them and all the others who walk the same horrible journey as they are walking, but all that I am able to offer to them right now are my prayers and thoughts and I ask that all of you do the same.

A day of fashion and VIP treatment

On Friday afternoon Bianca and I had the opportunity to attend a fashion show. It was kindly made possible for us by Air New Zealand through the Make-a-Wish Foundation. We saw one of the shows that formed part of the Air New Zealand Fashion Week and it had a total child focus. All the models were cute little girls and one cute little boy, who showcased clothes designed by Trelise Cooper.

Before the show we were invited to the Air New Zealand lounge area that was beautifully decorated and had really comfortable bean bag chairs all over. It had the most stunning view of the harbour and I could actually visualise having such a room as my living room (wishful thinking...) :-).

They served pretty pink cupcakes for the girls and other tasty goodies for the adults. I met some of the other moms who had wishes granted by Make-a-Wish before (and Bianca quickly made friends with another little girl) and we also met some very friendly and helpful Air New Zealand staff. It was also great to meet two of the Make-a-Wish staff (the new CEO and Linda, the wish coordinator). Then when it was time for the show we were taken through and past all the people waiting in line. Wow, we felt like VIPs and that was so cool.

I've never been to a real fashion show, sure I've seen it on TV, but to actually be there. Wow! It was so weird seeing so many photographers all ready for action. On our chairs we each had a bag full of fun stuff and the catwalk and backdrops were all decorated in brown cardboard, and it looked like a gingerbread house, it had a bird that moved and a sun that indicated the start of the show. Then the show started and all the little girls walked across the catwalk to the music of A Teddy Bear's Picnic.

Bianca loved the experience and it was such a fun day for the two of us.

Speaking of Make-a-Wish we received a call from Steve, our one Make-a-Wish volunteer and it seems as if Bianca will be getting her wish really soon (but more on this a little bit later).


Beautiful art

Things are mostly going well here with us. Bianca still has a cough, but it doesn't seem to get any worse, so for now we're just keeping a bit of an eye on it. I can't believe that it's nearly school holiday time and I also can't believe that Bianca's been at school for more than 6 weeks already and this afternoon Terence and I met with Bianca's teacher to discuss her progress. We are so impressed with how well she is doing. We are still feeling so amazed at the fact that Bianca is actually able to go to school, I find it so amazing how she suddenly picks up on all sorts of different words and things.

Then this evening we went to the Art Festival at Bianca's school and they had the most beautiful artwork on display. We saw two of Bianca's pieces and we are so proud of her!

This one is about Red Riding Hood

Here they had to try and draw their self-portraits.

Caitlyn has now sort of learned to count. When we start counting as she goes up or down the stairs in our house we will go "one" and she will then say "twooo" and then "wee" and it is so funny when we get to "eight" she will then say "nine". She has now also started saying two words together and this morning she said "bye cool" (bye school) as we dropped Bianca off. Bianca likes it that I drop her off and then she walks up the path to her classroom, of course I stay there on the path, watching until she is inside her classroom (even though it is really just a few metres, but still - I'm not quite ready to do the whole drop off and go kind of thing). This morning Caitlyn wasn't too impressed as she wanted to go with Bianca to drop her off at her class.


Devastating news

Right now I am utterly devastated and heartbroken. I just got news that a little girl has relapsed. That is a dreadful word, a word no parent ever ever wants to hear, and when I got the news I felt numb and then instantly an incredible sadness took over. I've followed their journey for a long time now and I've just been so pleased for them that she amazed everybody each step of the way, that she finally finished all that horrible intensive chemo and radiation and celebrated with them as I read about the day they removed her Feeding Tube and her Hickman Line. I feel devastated that this horrible horrible disease returned without warning. And now? There are no further treatment options for them. Please keep this family in your prayers and thoughts as they enter the most challenging part of their journey. I cannot even begin to imagine, I mean I couldn't even imagine how tough her treatment plan was because it was way more intense than it's ever been for us. And now? I just feel so heartbroken for them, so sad and feel that this is just so unfair.


Busy days

The last time Bianca had the opportunity to swim was probably a week or two before she was diagnosed. I remember us sitting in the little meeting room with Doctor Anne and one of my questions was whether Bianca would be able to continue swimming and her answer was a very big no. It was devastating because before our eyes a lot of stuff Bianca enjoyed doing slipped away, and we didn't know for how long. Basically it is not so much the swimming that was the problem, but public pools are a breeding ground for germs and stuff and so would be a very likely source of infection. So Bianca hasn't been in a pool for many many months. Of course before Bianca got sick I never really thought about public swimming pools, but if I really think about it then it is not hard to imagine why public swimming pools would be quite risky for Bianca. So anyway, on Saturday Bianca went to a birthday party for one of her friends at school and they have a spa pool and so Bianca had the best time ever splashing around in the spa pool. She still spoke about it for hours afterwards. She just loved everything about the party.

Other news is pretty much that Bianca is doing so well at school. I can't believe that its been already more than 6 weeks. It is amazing how Bianca suddenly picks up words everywhere. Just on Friday she got a certificate in the morning assembly for sounding out unfamiliar words. I understand that is an important step and once kids are able to do that, then they are well on their way to successful reading. On Wednesday Terence and I will meet with Bianca's teacher to get an update on how things have been going. On Wednesday (or Thursday) evening we will attend a visual arts festival at Bianca's school and we'll get the chance to see some of the artwork Bianca's been doing and we will even be able to order a calendar with some of her art work in it. And on Thursday Bianca will also have a fairy tale dress up day at school. She's already chosen to dress up like The Little Red Riding Hood. When I was still in school, I had no clue just how busy life can get when you are the mom and when there are so many things happening at school. But I'm not complaining. It feels so good that Bianca is able to go, and have friends and do all the stuff that earlier this year we thought wouldn't happen now. And that's when you realise just how many times we take a lot of things for granted.

On Sunday we will be going to MOTAT and they will have a Girl Power Day. That will be so much fun and the perfect day to spend as a family, because next week Terence will be in Wellington for 4 days for a course. I know the girls will miss their dad terribly, but the course is really important for Terence's job.

Other than this we are pretty much just trying to catch up on unpacking and of course the housework never ends.


1 More year to go

Today we have exactly 1 year left of active treatment. I'm pretty sure this is how it is because for our specific treatment it is 2 years from the date we started our Interim Maintenance phase and that was on 11 September 2007. Last year this time Bianca was neutropenic and had to stay away from any indoor public places and other people, today seems quite different.

Whilst it is still a long time, it does feel in some respects as if we can start counting down. And in one way next year this time will feel thoroughly good and exciting and hopeful that life can just be normal again, but in another we will reach the stage where we will leave the "safety" of our treatment behind and then becomes all the "what ifs?" Of course reaching the end of our treatment doesn't mean that is the end of it. We will have no test that will tell us if the treatment was 100% successful and we will enter a waiting game. They say the first year off treatment will be the most critical time where we will have the biggest chance of a relapse, but we will still have to wait around 4 years before Bianca's chances of a relapse will be significantly less. And for many years to come we will continue having regular checkups.

But still, only 1 year left. That feels pretty good and pretty promising! And tonight Bianca is in pretty good spirits, laughing and playing and today she even managed to count from 1 - 100, so a good day to realise that there is only 1 more year left.


A sore tummy

The last couple of days Bianca has been complaining of a sore tummy. Not in extreme pain, but it seems to be something she is aware of. Of course I am wondering if this is just her recovering from the steroids and extra eating or if she is perhaps still a bit hungry at times (and not realising she might actually be hungry). But generally she is fine. Of course I can't help wondering about the last time a sore tummy actually turned into an infection, but so far she doesn't seem too unhappy so all is good I guess.


Celebrating Fathers' Day

The new house has been brilliant - it is a great change and we are finally feeling as if we can settle for a little bit, not permanent because it is a rental home, but for the time being that's what we will be doing. Today I've finally started on some of the boxes in the garage and my aim is to get it all unpacked soon. Of course it is a little challenging because Caitlyn likes to help, but not quite as fast as I would like.

The one thing though that has been giving us some problems has been our TV connection. We haven't been able to get any channels and the one channel that we managed to get was all fuzzy. Our lounge has 3 sockets for the TV connection and Terence tried it out, but no luck. So the owner organised somebody to come through and it took him all of 3 minutes to tell me that Terence plugged it into the wrong socket (okay fair enough we did think that this particular socket was for the Sky connection and because we don't have Sky he didn't try this particular socket) - so Terence will be paying $45 for using the wrong socket...

Sunday was Fathers' Day here in New Zealand. Terence had a great day! Bianca and Caitlyn had fun helping me make breakfast for their dad and they couldn't wait to wake him up.

When it was time, the girls were so excited to give Terence some presents and Bianca said "I'll help you open this one, look Daddy it is chocolates (her parcel also had some chocolates), can I have some? (steroids speaking...)". Bianca was very proud to show off a special card she made for Terence at school and even Caitlyn had a go at "writing" in her card.

We went out for lunch and overall just had a great time together enjoying the normality of it all. So to all the other dads who all celebrated Fathers' Day, we hope your day was as wonderful as ours!


Remembering... 4 years ago

Today exactly 4 years ago we arrived at around 9:30pm (if I remember the time correctly) at the Auckland airport. We arrived with nothing more than our dreams, hopes and sheer determination... and a just a few bits and pieces:
  • 6 large suitcases
  • a backpack
  • a babybag
  • a stuffed toy dog
  • a stroller
  • a camera bag
  • a handbag
  • a car seat
  • and a very tired squirmy little 14 month old
We survived a 14 hour flight from South Africa (11 hours to Sydney and then 3 hours to Auckland) with our 14 month old who by that time didn't want to sit still anymore.

I remember how very different everything looked, but it did feel like home to us - after all we spent 2 years prior to making the big move before we finally decided to make the big move - so we were ready. Whilst there are some really special people in South Africa that we miss a lot, we do feel that this was the right move for us.

This is what Bianca looked like around the time that we came:

We rented a tiny little 2 bedroom unit in Milford, Auckland:

This is the view of the street, where we lived (taken at the top of the street, by the bus stop):

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We now have a cool little thing on the right at the top where you can add yourself as a follower of our blog. Not sure how it works, because it is a new feature, but we'll give it a go and it would be cool if you could add yourself.


You know you are dealing with steroids when you go to the shopping centre and ask your child "Bianca, would you like to go look at the toys?" and she says "no, I want to go look at New World (a grocery store) and look at food".

Today (Saturday) is the last day of this month for steroids (until next month again). This month was tougher than usual and although we had a pretty easy start, things did get a bit tougher towards the end of the week. Oh fun!

On Thursday Bianca had a fun Olympics Day at her school. It was just a bit of fun, but all the kids were put in different teams and then they all participated in the different activities. Bianca had great fun, and it was cool to be able to go and watch, so I followed Bianca's group as they went from activity to activity.

For most of the day Bianca was pretty happy, but towards the end, she started crying and when I asked her what was wrong she said "I don't know" and of course then she became pretty clingy. Several teachers and parents wanted to know what was wrong and all I could do was give them a little smile and say "steroids...".

For most of the week, Bianca woke up around 5am wanting food, so we've been leaving a little container with things for her to eat at that time. Then this morning she came into our room at her usual 5am / 5:30am wanting to know if it was time to get up and I replied "not yet". Then at around 6am Caitlyn called and then I had no choice but to get up. So we got up and made breakfast and first Bianca ate around 5 slices of toast and then some Milo Cereal with milk. At around 9am we went out to the shops and promptly at 10:30 Bianca declared "I'm really hungry for Subway". As soon as she was done, she immediately said "I'm still hungry".

In many respects we have it quite easy when it comes to dexamethasone. Bianca rarely gets what they call "roid-rage" where the kids get these terrible temper tantrums. I mean I've seen some kids get temper tantrums just because they are spoilt and naughty, but unfortunately it is quite a bad side-effect of the dexamethasone, so we've been lucky. But we do get Bianca being more emotional than usual and certainly Thursday was such a day with her pretty sad and clingy. And this time round we've definitely had the bigger appetite and constant hunger side-effects. And as many other parents of oncology kids on steroids will say, kids develop very particular cravings that will infiltrate their thinking, their play, their discussions - food, food, food.

So I am really really glad that we are all done with Dex for this month.


And dex strikes again (but not too bad)

Today I couldn't resist getting matching outfits for the girls. Usually I'm not one of those moms who dress my girls the same, but I thought it would be cute.

Bianca also had great fun watching Suzy tonight, but soon enough the Dex took over and she fell fast asleep on the couch. Yet another week of Dex. It's not too bad (so far), but tonight she did seem a little more tired than usual.

Today was a bit of a challenging day with Caitlyn being a typical 18 month old - one moment all happy go lucky and the next as moody as you can get and she's even had a time-out today. But she is awfully cute too and that totally makes up for the "terrible twos" that happened sooner than anticipated. But at least she sleeps really well at night and that is a big relief!