The way it was meant to be

I often think what a great decision it was to move to New Zealand nearly 4 years ago. Well, on the 6th of September, it will be exactly 4 years since we came in 2004.

It was a bit of an eye opener too. Firstly to come here and realise how very different it was to the life we left behind - but in a good way. Different because it was safer here in New Zealand. Much much safer than in South Africa where we lived up to that point. For one we didn't have burglar bars and security gates or electric fencing, and we certainly haven't experienced the same kind of fear that walks hand in hand with the violent crime that you find in South Africa. So when we arrived, this became home and not long after, we managed to get permanent residency.

It was also an eye opener because when you make such a big move you will have some family and friends truly supporting you, and those who don't really and sit there waiting for you to return - disappointed at what a big mistake it was. Of course we never did this, we've always been happy with our move.

Initially we started a website at home, run from our own computer that we would keep on at night so our friends and family could access it, but it soon became clear that the interest was minimal, maybe the process was complicated as it wasn't a typical website. After that we would send out little newsletter type emails, but of course that makes it hard to manage when some people could receive images on email, others couldn't and some could receive original sized images and others couldn't. So it became a big mission just to customise each newsletter email to suit everybody and then to send it in batches because our email could only send a certain number at a time and more often than not we would unintentionally leave somebody out.

When Bianca became sick we started this blog. It's been great to have a central point to communicate updates and to post photos. It's also been interesting to see the stats of where our support was coming from and I have to say that the US is a clear winner with New Zealand in close second. We have some readers in South Africa (and I have a fair idea who they are). And then a number of supporters in other countries - Sweden, UK, Australia (mostly Perth and Melbourne, but on the odd occassion from some other regions), Dubai, France and several other countries. So thank you to all those who came along and support us. And thank you to the family and friends who remained in touch, who would continue writing to us with their usual, ordinary news despite the fact that we don't always have the opportunity or luxury of time to sit and write messages too.

For the first year since Bianca became sick, we spent most of our time going backwards and forwards to hospital for visits and more hospital stays than many people would experience in their life (106 days and hopefully no more). And then we always play "catch up" - catching up with the laundry, the never-ending dishes, the usual house work and since then we've moved from Wellington to Auckland and will move to another rental home in the next week (because of issues with the current rental home). In between there is Caitlyn with her own set of needs who was only 3.5 months when Bianca was diagnosed. And then throughout the day from breakfast to bedtime, Bianca is on a medicine schedule (much like having a baby all over again). Wake up, get breakfast, give her her morning meds (Acyclovir and sometimes Co-trimoxazole and Dexamethasone), then comes lunch time and it is time for the next Acyclovir, then comes dinner time and it is time for the next set of meds (Acyclovir and sometimes Co-trimoxazole and Dexamethasone) and then set the timer for 2 hours and then chemo and then bedtime.

And then (especially in the beginning), you are trying to process and understand what happened. Every day is a day for learning, not only do you have to get used to the never-ending medicine schedule, but there are times where it gets adjusted (just to keep things interesting), you have to constantly plan (are we going out? We have to remember the [whatever medicines Bianca will need to get] ). We have had to spend a lot of time just learning about Bianca's treatment plan and what to try and expect. Starting school was another aspect that took a lot of focus because it isn't as simple as arriving there with a new bag and uniform and starting. We needed to work with the school so they understood our expectations, we understood how it will work, not sure if Bianca would cope with the days at school, not sure how steroids and school would work together, not sure how the different side-effects of the different drugs and treatments will affect Bianca when she is in a school environment. Just yesterday I thought (at the CCF coffee morning), it is quite funny when you get some of the oncology parents together - we really do sound like a pharmacy or like medical professionals (but then we had to pick up this new information just to gain some control).

And on top of all of this, it does take a lot of energy just to be positive. Just to pick yourself up and look beyond the cancer treatment, to "live life" despite the cancer.

We've decided from the beginning that we would try and have as many "normal" days as possible, we would still have the same expectations of Bianca as before but we would be a bit more flexible. Just as before we maintained discipline. We expect good manners, we expect Bianca to sit still at mealtimes, we expect her to eat her food and we certainly do not "reward" Bianca when she doesn't eat by giving her treats afterwards (unfortunately chemo changed her appetite, but as long as she still eats something healthy then we are happy). We expect Bianca to be gentle and kind and not to scream and shout at people and as a result we don't have a child who throws temper tantrums when she doesn't get her way or when we go somewhere and she didn't want to leave. Fair enough steroids do have a huge impact on behaviour and eating habits and so on, but she knows our expectations and she tries really hard to fit in with this. From our side we make sure Bianca feels safe, where she has a voice, she is able to discuss her concerns, her worry and her fears. She is able to discuss it when somebody hurts her (whether it is at school, at the hospital, wherever) and she knows that we are on her side and that we would protect her as much as we can. We always discuss what will happen, we've never lied to her (i.e. "it won't hurt" when we know something will). So from that point of view Bianca has always felt safe and important.

We've decided from the beginning that we will work hard to be positive. We didn't want to look back and only remember being sad, we wanted to have fun in the process too, see Bianca being happy and laughing and so on. So just as before Bianca became sick, we try and play a lot of games at home, go to the park, read stories, visit the beach, MOTAT, the zoo or whatever (since Bianca became sick, going out has become more complicated, but we do our best). We want our children to feel loved, cared about and that they get sufficient attention. We believe kids shouldn't have to work to get attention and it wouldn't be fair to push them aside just because we wanted to do something else, so we do our best and spend a lot of time with both our girls.

Being positive requires effort. In this journey it would be so easy just to sit in a little heap feeling sorry for ourselves. When you think about it, this journey is 2.5 years long and that is just the active treatment part, there were many days in the beginning that I thought this felt exactly like a prison sentence. So yes, we've spent a lot of energy on this aspect, but I'm glad we've decided to be as positive as possible, it certainly has made things easier and more manageable - but unfortunately it does sometimes leave you exhausted at the end of the day.

And through this journey, I realised one very important thing, we were meant to come to New Zealand when we did and obtain our permanent residency when we did. At the time we didn't know that a couple of years later, Bianca would be an oncology patient. And our move to New Zealand was a blessing, because we don't have to pay for Bianca's treatment. We are in a place where we don't have to have medical insurance, we don't have to go to a private hospital - the care Bianca receives is really good in comparison to other places and if we had to pay for her treatment, it would be incredibly hard - I have no idea what it would cost (but I understand (not counting every single thing Bianca's had and will still get) a single Peg Asparaginaise shot would be something like NZD10,000 and Bianca had 3 of those before she had to get the 6 Erwinia ones which were slightly different, but served the same purpose).

So often when you make a decision it is not always clear why you have to make that decision, and often people blame you or they don't accept your decision, but in the end we cannot make decisions to please others. We have to make decisions that would be the best for us and for our children. So with our move to New Zealand we've given our kids the chance to have a great childhood in a safe environment, have good education and good opportunities going forward and (even though we didn't know it then) good medical care for Bianca.

Do we regret coming to New Zealand? Absolutely not!


Anonymous said...

I'm really glad that you all came to NZ too. Its great that you are always so positive. I do try to be too, but sometimes it is very hard.
That is amazing hearing how expensive chemo actually is. I hadn't thought much about how lucky we are in that way.
I always really enjoy reading your blog. You do such a great job.
I hope you all have a great day today.
Take care,

Anonymous said...

Hi Lea

My hart gaan uit na julle elke dag, ek maak drie kinders groot en dan kla ek want ek kry nie tyd vir myself en is konstant moeg, maar ek dank God hulle is gesond, dis genade.

Ek lees jou blog amper elke dag en staan amazed oor hoe positief, sterk en gebalenseerd julle is, ek is ook baie bly julle het NZ toe getrek en is bly julle is gelukkig daar. Ons mis julle net, en dis vir my hartseer dat Caitlyn al so groot is en ons haar nog nooit eers gesien het nie, ek kan ook nie dink Bianca is al so groot nie, hulle is albei pragtig. Jy is 'n besondere goeie ma, en weet julle is in my gebede. Baie liefde


Anonymous said...

I am so blessed by what you wrote. I only have a second-hand experience with our friend's daughter having cancer, but enough to relate a bit. This post is great--I wish that all cancer-touched people would read it, and all who haven't been touched by cancer too. It is inspiring, thoughtful and sheds some light on the way we react to all aspects of life. Thanks!

Annie - Steven's mom said...

Dear Lea
I am also so very glad you are in NZ and understand what you say about what happens when you leave not only a country, but the people you know there too. Also how decisions made for one reason turn out to be critical in another. This is the same with Steven in many ways.
You are one awesome lady with a strength that is as beautiful as your girls.
Love and light
Steven's mom