I don't know when people started going all crazy about Twilight, but I never really fell for the whole Twilight thing. I never felt the urge to rush out and buy the books or watch the shows or search for any of the photos of the Twilight cast. I simply shook my head each time I read about people going crazy about Twilight, starting forum topics about it, discussing it at length and smiled. After all I much rather prefer the cozy little world of Gilmore Girls. Now that's a show I could just watch over and over - Gilmore Girls.

But anyway, on the weekend we went to the library and as I walked past the one display on the way to the children's side to look after the kids while Terence searched for books for himself, my eye caught a copy of a Twilight book, sitting right there screaming out at me. I walked past thinking that I don't particularly cared for it, but then stopped thinking "hmmm, it is such a popular book and there it is sitting on the display stand begging to be read, I may as well borrow it to see what all the fuss is about", so I took it. When I wanted to check it out, it wouldn't let me. Went to the librarian who confirmed it was put on the display by mistake as it is actually reserved for somebody else and she wanted to know if I wanted to reserve it too. I accepted and she put my name on the list.

And yesterday the email arrived to say that the book is all ready for my collection. So now I sit with the book at home, started reading it, and now I guess I'll be able to see what the fuss is all about. Terence told me I'm only allowed to borrow the book if I promise not to get addicted to it :-). Hmmm, what do you think? New addiction or not?

Monthly hospital visit

Yesterday we had Bianca's monthly hospital visit. She still needs monthly hospital visits for checkups and of course she still has her port which, as long as it is still part of her, will need to be flushed on a monthly basis to make sure it keeps working. The doctor confirmed yesterday they usually remove this 3 - 6 months after treatment ended. We had an early appointment for a change. Usually our monthly visits would be in the afternoon, which if you still need an IVIG, makes it feel like an incredibly long afternoon (especially when they start late). So the morning appointment felt so incredibly quick. Bianca's blood test results are still great. Her platelets are down just a little bit, but not anything to worry about. We are waiting for her immunoglobulin results and that will tell us if she will still get an IVIG next month or not and I think we are starting to reach the end of these which will be another thing to tick off our list. Once we don't do the IVIG's anymore our visits will become really quick - pretty much just bloods, wait for results, see the doctor and "goodbye" - wow that's going to feel strange.

The rash is a bit better and Bianca's face looks less like that of a pimply-faced teenager, but it is a bit on the itchy side at the moment. So the doctor prescribed a generic version of phenergan to provide some comfort from the itchiness. Hopefully this will prevent Bianca scratching her face too much at night.

Other than that, things are going pretty well. Bianca has a bit of a cough, but the doctor isn't worried and so we are not worried either. The only not so nice thing is that Bianca woke up at 3am vomitting and thankfully it seems to be only a one-off. The last thing I'm in the mood for right now is a tummy bug and it is probably just something that she ate or had earlier in the day - not sure if it is the tacos she had for supper (which really is only a tortilla with some chicken and cheese), or the popcorn she had when we watched a movie later-on or maybe it was the phenergan. That was the only thing that was new. So we are not quite sure what was up, but kept her home this morning just to be on the safe side.

And slowly but surely we are picking up the pieces and finding normality again. I'm planning on starting my studies again early next year and I'm busy looking at job opportunities again. That part is really exciting and I simply can't wait.


Rainbows End

Last week was a pretty exhausting week. The Friday before Caitlyn started coughing and since then we had a number of pretty full on nights with her waking up several times, coughing, then getting distressed because she woke up and felt tired and this in turn made her coughing worse. On Monday last week we had a doctor's appointment which was a follow up appointment from the last time she had a cold and an eye and ear infection and so we used this appointment to discuss the latest cold. The doctor noticed a faint rash and wondered if she was perhaps busy getting measles seeing as this is busy going around here in New Zealand at the moment (thanks to so many parents who for such a long time refused to immunise their kids for measles forgetting that measles can actually be a deadly disease). I wasn't too worried, because Caitlyn is fully immunised, but it is always better to be safe than sorry and especially since measles would be incredibly serious and life-threatening for Bianca, the doctor decided to let us do a full blood count and to check Caitlyn's immunity against measles. So after our appointment we went off to the lab. They were so busy and I was so not looking forward doing bloods with Caitlyn and thankfully things happened quick enough and we left in search of a special toy for Caitlyn for being so very brave. Caitlyn's full blood count is great and it turns out she has good immunity against measles and german measles and so the likely cause of all this - some kind of viral infection - probably nothing more than a bad cold. But anyway, Caitlyn is much better at the moment and is sleeping so much better which is a great relief.

On Saturday we wanted to do something that was fun and relaxing after the week we had and we are so thankful for CCF for organising us tickets to Rainbows End. It is definitely one of our favourite places and they have so many different rides to go on - things like dodgems / bumper cars, a pirate ship, a roller coaster, a log water ride and so much more. Caitlyn and Bianca had a great time with us on the dodgems

And then Terence and Bianca went off and did some of the "bigger" rides.

Caitlyn and I spent most of our time in the dedicated area for little kids. Every so often Bianca would come and join us in the area for smaller kids.

This ride was definitely Caitlyn's favourite and she just could not get enough of it. I think she probably ended up going on this one 10 times.

We had such a great time. The kids had a blast and I think what Caitlyn especially loved was the fact that she could go on as many rides as she wanted as many times as she wanted and after 5 hours she was totally exhausted and it was time to go home. What a fun day!


A new NHB initiative coming

Today we noticed some articles in the paper (NZ Herald article and Stuff article) about the plan (as far as I can see) to consolidate all the district health boards into one to become a National Health Board and this means that things like IT, payroll and Admin will be centralised. I'm not quite sure what I think about it because as it is I don't know that much about the actual running and purpose of each individual district health board. I didn't even know we actually had 21 district health boards which sounds quite significant for this small country with its small population.

My only experience is really just with the CCDHB in Wellington, the one in Christchurch that we briefly dealt with and now the Auckland one. Of all of them I think the Auckland one (from our experience) seems the be the most efficient, but I'm only speaking from our experience. Well mostly efficient, there is one specialist that I can't handle because said person must be one of the rudest and most impatient people I've ever dealt with and I'm not the only one not happy with this person (who shall not be named) and no amount of formal and informal complaints have ever made a difference. Certainly my complaints resulted in them defending this person. But anyway. These things are long gone and as far as I'm concerned this particular specialist does not exist and if I have to deal with this person, then I'll tolerate this person, but I will not ask questions and I will seek a second opinion. But for most of it we've been very happy with Auckland District Health Board.

I was happy with the nursing staff and when we had our oncologists in Wellington, I was not happy with CCDHB at that point in time. I really felt they could have done more and do better to retain staff. But I understand the new CEO is trying very hard and so is meeting with a parent focus group or something. That is a good thing. Of course prior to us coming to Auckland we had Christchurch running the show for a bit and I must say I never felt it worked very well. For one I never got the feeling the specialist knew Bianca or the details in her file. I was shocked when she was in with shingles he saw her and then 3 weeks later he asked me "so is her face better or worse than I last saw her?" and then he asked "so how far along in her maintenance is she?" I felt a bit shocked because I assumed that as the specialist in charge of my daughter's file he would know a little bit more and at least have read her files and the notes one would imagine he would have made, and it didn't feel very safe that he could make the best decisions when he seemed to have known so little about her.

I will also never forget the day Christchurch decided that they would suddenly do all scripts and we needed to fit in with their processes and protocols. There I sat waiting to hear what time we would get Bianca's chemo script and even though the Wellington staff left like 3 messages, nobody answered. I think it eventually came through after 4pm. That is despite the specialists knowing that the local pharmacies couldn't supply chemo as it needed to be ordered by a certain time, that is despite knowing that Wellington hospital didn't have a pharmacy on site and that we would have to take the script to the pharmacy up the road where you struggle with parking, you would have to hand it in and then wait and what if they were about to close by the time you get there or worse was closed? Thankfully it got sorted out, but it was so frustrating realising that there was a real possiblity my child might not get her chemo script to use that night still all because of them implementing a new system with very little notice and real thinking behind it and that what worked in Christchurch (with an onsite pharmacy) might not work in Wellington. I really felt that their admin process could have potentially put Bianca at risk and it was as if they just did not care. But anyway, also long gone.

I think what is good about district health boards is that they are run locally and can cater for the local people. But I guess having a central system means that perhaps they will all adopt the same processes and protocols throughout, so that regardless of which hospital you go to for treatment, you will get the same service levels and if they can avoid duplication and cut costs this way then that is also a good thing - why do you need 21 different people doing the same thing that 1 or 2 or maybe 5 can do? Perhaps also if things are a bit more centralised and doctors do give bad service like with our experience, we can really take it further rather than letting local people shove it away and pretend it never happened just because they don't want to deal with it.

Of course the sad thing is that so many will lose their jobs to implement the process and unfortunately with the new initiative they won't be able to avoid that. So I'm not quite sure what to make of this new initiative.

What do you think?


A great way to spend our Sunday

Boring update, I know. But sometimes those updates are good.

Yesterday we took the girls to Hoyts Cinemas. They had a special showing - Angelina Ballerina and Dora the Explorer. We don't often find movies at the cinemas that are suitable for Caitlyn too, so yesterday was perfect.

I must say that we were thoroughly impressed with the leg room between our seats and the seats in front of us. Of course Caitlyn decided it would be perfect to dance along with Angelina Ballerina.

As we waited for Dora the Explorer to start, Bianca and Terence tried out some of the games in the small arcade area they have. It was so cute watching Bianca trying out some of the games:

All in all it was a great way to spend our Sunday together.

And then later on Terence decided to become all creative and play around with the camera and this is what he took:


What a tough week!

The past week was fairly exhausting, apart from the whole swimming thing where I never realised just how unfit I was, but I perservered for 3 days and I'm hoping the motivation will still be there next week. Caitlyn actually loves the "new school" as she calls it which is the creche they have there for when you go to the gym or to swim and you can leave your child for 2 hours with them, or actually I think she loves the fact that she gets to take her lunchbox with her and sit at the little table having whatever I packed for her. This swimming / creche concept is great. It gives us both a chance to get out of the house.

So apart from the swimming which was exhausting, I must say that it has been a fairly sad and perhaps emotionally draining week for me this week. It wasn't because of anything we are dealing with, but what so many others are / have been going through.

First little Aisling who despite my non-stop prayers that she would be found, was found, but unfortunately passed away. I cannot even begin to imagine what her parents and her big sister and extended family must be going through. It must be like living in their worst nightmare which you just don't wake up from. A nightmare that started in a moment, one fleeting, brief moment and won't stop. It just keeps going.

Then I learned that one of the girls who was with me at school passed away probably around 4 years ago and I was incredibly shocked to learn that she was shot and killed by armed robbers who broke into her house. She had a little boy at the time who is now living with her mom. I know that this is a reality for so many in South Africa, because let's face it crime in South Africa often walks hand in hand with violence and all too many people are highjacked, raped, killed and tortured. I've often wondered how many children have witnessed their moms, daughters and sisters being raped and their family tortured and gunned down right in front of their eyes. I often wonder whether these kids will ever learn to cope with these kind of things and whether they will grow up being really really angry adults. Yes, yes, I'm probably going to have so many South Africans shouting at me right now for acknowledging that things are far from great in South Africa, but life there can be scary and for many people life is very scary living there. But in saying that many people say they are very happy there, many people say they feel very safe despite having burglar bars and security gates and electric fencing and that is fine. So even though I know that this girl became a statistic, it didn't change my shock and horror to learn that this was the way she had to die, that she'll never get to see her little boy reach any of his milestones and grow up and this little boy is now growing up without his mom and effectively won't really ever know her. That is so incredibly tragic and sad.

Then just yesterday I learned that another boy who was with me in high school committed suicide. I don't know when, but once again, it doesn't change how sad and tragic it is. That he had to feel so desperate that the only solution he could come up with was to take his own life. I don't know the circumstances, but wow, that is so incredibly sad.

I learned that Christopher's cancer came back. I have been following their journey for some time now and I feel so incredibly sad for them that they are yet again having to walk this path again. I can't even imagine the frustration, the sadness, the fear, the exhaustion that they must be feeling right now.

And then my blogging buddy Sharon, she's been trying for 8 long years to have a baby, she's had countless tests and procedures and they have just recently started her FET and at first it really seemed to go well, her counts were good, things were going according to plan until yesterday when she learned her counts started coming down a bit. She has another test on Saturday to see what is happening. I can't even imagine the rollercoaster ride that she is on. To ache for something that to many seem so basic, so "taken-for-granted" and each time it seems so close, just to be whisked away faster than she can blink. I have been praying so incredibly hard for her and I ask that you will keep her in your prayers and thoughts too.

This was a tough week, a sad week and I wish that things were so very different and so much happier and less stressful for these people and so many others who are going through a particularly tough time at the moment.


Time to do something...

Today I did something I haven't done in a long long time. I went swimming. Now I'm not talking flopping into the heated spa pool for an hour or so, I'm talking actually getting into the colder big pool and swimming lengths. And oh boy I am so unfit (I'm surprised though because I really thought with the amount of running I do after Caitlyn every day, that by now I should at least be a little bit fit, but no, far from it). But it's time to do something and get back into shape, although I guess round is technically also a shape, but not quite the shape I'd like to be :-). So after I did this 10 times (swimming lengths that is, not getting into the pool) I dragged myself out of the pool and... flopped into the heated spa pool (I mean it was there and it would be such a waste not to go there as well). So tomorrow I'll take Caitlyn to the creche they have there and then I'll go again. Hopefully I can get into a pretty good routine pretty soon.

On a final note I found the cutest video clip and it has now become one of my favourites: My Favourite Things. (You will need sound for this one).

Enjoy your day!


RIP Little Aisling

Click here for the:
NZ Herald Article
Stuff Article

I have no words, I just feel incredibly sad and heartbroken for this family. I cannot even begin to imagine what they must be going through right now. I pray that this family will find comfort and strength during this incredibly difficult time!


Where is little Aisling?

Last week a little 2 year old - Aisling Symes disappeared. All it took was a moment, a brief moment where her mom turned her back. It has now been a week, a week which I'm sure must feel like hell and like living in a nightmare for her family. I cannot imagine the heartache, the desperation, the fears, although as a mum I know how very quick these things can happen.

Around 4 years ago when Bianca was around Aisling's age, we went to a toy store. We were busy looking for a present for somebody and I just turned for a second asking the shop assistant something. I looked down to where Bianca was just a second ago and she was gone. I called Terence who was busy looking at some of the toys on the shelves and he said that Bianca wasn't with him. The first thing I noticed was the open door and I remember the feeling of fear and desperation as I raced outside to see if Bianca was there, but she wasn't. The street was empty (except for cars coming past). We went back inside the store and searched up and down the shelves and then (big relief) there Bianca was in the one aisles smiling at us as we raced towards her. It was one of the most terrifying moments of my life. And I have never forgotten how scared I felt or how very quick it was.

My heart really goes out to this family. I've been praying non-stop that little Aisling will be found safe and sound and soon! This is what they have on their website:

Aisling is aged two years. She is a tall girl for her age, of European appearance, with light brown hair.

Aisling is believed to be wearing green parka jacket or ski jacket, blue jeans embroidered with flowers, and has white tennis shoes on her feet. You can see the the shoes Aisling was wearing at the time she went missing in the photo.

Please keep Aisling and the family in your prayers. The police are appealing to the public for information and to keep their eyes out for her. She may be anywhere in New Zealand, so please keep an eye out. The last confirmed sighting of Aisling was 5:15pm on October 5th.

If you think you may her seen her or know anything, even if it seems insignificant, it may not be, so please don’t hesitate to call them on this number: 08004AISLING (08004275464)


On the topic of our perfect day

One of the places we drove through to get to Mangawhai Heads was Warkworth. It is a really small town, but a really pretty town and you can read more about it here. I especially like the style buildings they have and they have some really old buildings too like this court house that has the date 1880 on it:

The town has such a peaceful feeling where a Sunday still feels like a Sunday and where some of the shops close and people take it easy. I think that's the kind of town I could quite happily live in.

And I also liked this park / reserve that is right there in the middle of town:

And then just a little bit out past all this we drove past Sheep World and we spotted this:

A perfect day

Today was such a lovely day. Friends invited us to their bach (for those of you not familiar with this term it is like a holiday home) and to spend the day with them. So off we set to Mangawhai Heads. It was probably an hour and a half from our house, but what a very pretty, scenic drive! We've never been up that side and it was such a relaxing drive.

We spent some time at the beach and wow, what a beautiful beach! It is (as far as I know) a surf beach so has some bigger waves than most of the beaches we tend to take the kids to and it has pretty cool sand dunes that you could slide down if you wanted to.

So here are a few photos just to share:

Can you believe it?

It has been a whole month since we ended treatment. Time really went by so fast. Tomorrow when school starts for the new term I need to collect all Bianca's acyclovir tablets that they still have for her as she won't need to go and get medicines at lunch time anymore. I think it will feel quite strange for them as this is the first time since Bianca started school in July last year that she will not need to get medicines at school. Things really are going very well indeed. Slowly but surely we are working on Bianca's eating and she's making good progress. Still sometimes a bit slow, but we are working on that. At least she is willing to eat what we make and we are happy with that. The only thing that is not so nice is that Bianca has developed this rash all over her body. It is especially visible in her face around her mouth. Today it was especially visible on her legs and at times the rash seems a bit itchy at times. I can't wait for that to disappear.

We (or rather Bianca) took this photo of her leg this afternoon:


When can I have a cat?

Today we visited my friend Irene. When we got there her cat was lying on the couch. Terence is pretty allergic and by the time we left for home his nose was pretty blocked up and his eyes a bit watery. Bianca had a great time playing with the cat and she absolutely adores animals (especially when they are cats). On the way home we had the following conversation:

Bianca: When can I have a cat?

Lea: I don't know, we'll have to see. Daddy is allergic and he might not enjoy having a cat around.

Silence for a bit...

Bianca: Can we buy a holiday home?

Terence: Why?

Bianca: Because then Daddy can live in the holiday home and I can get a cat.


Itchy Business

Tonight I had the wonderful job of washing Caitlyn's hair with lice / nit removal shampoo and then to spend the next hour or so trying to use the nit comb on her hair. That's right folks, that's the joys of daycare for you - the teachers at daycare pointed out today that Caitlyn has nits in her hair. And whilst I do understand that head lice is really just a part of life and not an indication of whether your hair is clean or not, it still feels pretty disgusting. Thankfully I didn't see any lice and she wasn't scratching or anything.

Caitlyn was very good and sat still for most of the time as I used the special shampoo on her hair (if nothing else I'm sure that the smell alone will kill off any lice that there might be) and then the special comb (not easy with her thick hair), and as long as we kept the treats and distraction coming Caitlyn was quite happy to sit still. Here is Caitlyn wearing the special cap that you put over the head after you used the special shampoo. It stays on for 10 minutes and then you have to wash it out.

So how many of you are scratching your heads right now?


Muddy gumboots and lots of fun

Wow! Today was a great day.

Today we visited the farm of a very kind lady I "met" on one of the forums I like to visit. She has a number of goats (most are Angora goats) and the cutest little goat kids. Here the human kids are meeting a goat kid, this little one's name is Bubbles.

This one came over to say hello.

And then we went to see the ducks. They are kept in an enclosed area so that the hawks, rats and pukeko birds don't attack the little ducklings.

Bianca was in her element to have a chance to hold this tiny little duckling:

This lady also has chickens and she was hoping that the one hen (who was particularly vocal at that point) was busy laying an egg, but no such luck. However when Bianca wasn't looking she hid an egg in one of the nesting boxes (or whatever you call it) and let Bianca discover an egg in the nest.

She has a great variety of birds in her aviaries and she breeds them and then sells them. There was even one that could talk a little bit and when she says something like "dog says?" then the bird says "woof, woof".

Inside her house she had some baby birds that she is busy hand rearing and that I presume will be sold (well one was sold as we were there). They stay in their cages for part of the day, but she also lets them out to spread their wings. They are so friendly and pretty soon flew onto our arms and my head. I thought Bianca might feel a bit frightened, but she really enjoyed the experience.

The blue one in the photo above took an interest in our water glasses and he decided to have a bath in the one glass and then suddenly realised that it wasn't such a good idea. So the lady helped him out pretty quickly. And needless to say we didn't drink water from that glass again :-).

Then she had one last surprise for Bianca. She had this small box next to her and when she opened it we heard the funniest noise, almost like a fan or something, turns out they are tiny little baby birds who recently left the nest, but that she is feeding 4 times a day (a special porridge-type food) and they were making this funny buzzing kind of noise. Bianca took a liking in this little one. It didn't even have feathers yet, but when it grows up will be just like the yellow one above.

He felt quite warm and he kept going towards Bianca and snuggling up against her arm that was against the table. At one point it looked like it was yawning a bit, so it was time for him (or her) to go back into the little box with its friends.

And then it was time to go home. Afterwards Bianca asked "when can we get a farm?" and "when can I get a baby bird?" I had to explain to her that when you buy a baby bird it doesn't look like the tiny little one she held in her hands as that one is too small to live on its own. And then later on Caitlyn said "I walk in mud".

I simply can't wait until we are able to have our very own lifestyle block.