How we have managed to cope so far

The past week we have seen a lot of media coverage on the child cancer crisis here in Wellington. It feels really frustrating that parents are already fighting really hard, challenging battles to get their children healthy again and now have to fight a battle to keep the service that is supposed to help them get their kids better.

To the outside world our situation may seem pretty easy - Bianca is standard risk, doesn't experience many side-effects and overall seems pretty happy and it is hard to tell (apart from having no hair) that she is actually sick. And certainly, because this phase was pretty uneventful our situation seems pretty average in comparison to some of the others. But it is definitely not an easy journey. It is hard and challenging. Yes, it is manageable, but not easy.

Now that Dr Anne resigned (and we really don't blame her at all), we feel quite stressed as they have only just started the recruitment process to hire not only one, but two paediatric oncologists. We don't exactly have a large number of those specialists sitting around in New Zealand and waiting for opportunities to come up.

So initially we probably won't be much affected as the shared resource from Christchurch should be able to assist us. Of course, the worry in my mind is "what if they can't find anybody?" Then I have this tiny little voice in the back of my mind saying "then they will have to close the unit". If that had to happen, then the only thing I am praying for is that the future visits will only be short ones, quick ones, but then even after Bianca completed her treatment, she will still need to be monitored for a long long time thereafter to make sure the leukemia doesn't come back or that another cancer does not develop.

Of course it is easy to say "don't worry about it now", but if I don't consider that the unit might close, and it happens, then I wouldn't be prepared. So to me it makes sense to have this possibility in the back of my mind so that I am emotionally prepared and ready to make a decision.

Of course we did not have a very good start and ended up spending so much time in hospital. Being there for 34 consecutive nights (part of a total 56 non-consecutive days) and during those 34 nights, I had Caitlyn with me during the day for 3 weeks as she could not go to daycare. So not only one sick child, but a baby with her own demanding needs. It was hard and I was so grateful at the end of the day when Terence came to the hospital from work just to have a break. Living like that is no fun, I would stay with Bianca from early in the morning right through until Terence finished work, then I would have a short break and then I have to go home, feed and bath Caitlyn, put her to bed, do washing, iron clothes for Terence and Bianca, pack hospital and baby bag, wash bottles, and so on. And of course get up in the night for Caitlyn. Then tomorrow we would do it all again.

If Bianca needed to stay in another hospital far from us for long periods of time, then we would have no choice but to move. Recently Terence was away for just a bit more than a week and every day Bianca would ask when her dad would come back, she became quite emotional, clingy and sad. Bianca has such a very close relationship with her baby sister and if we had to take that away because we couldn't all be in the same city, then they would lose that close bond. Caitlyn is too small and at the end of Bianca's treatment Caitlyn will be nearly 3 and will have no memory of right now so it is really important to us to let Caitlyn spend as much time as possible with Bianca. Her whole face lights up each time she sees Bianca and Bianca just absolutely loves being a big sister.

Unlike a lot of the other parents, we don't have any other family here in New Zealand. We just have us, so if we had to split up because the unit had to close down, then we will have to do this with no support whatsoever.

Because we have remained together we have managed to bring a sense of normality. We have managed to focus on positive aspects and not just revolve around Bianca being sick. Even when Bianca was still staying in hospital, it made such a huge difference each time she was able to see all of us and spend some time with all of us (even if it was just a little bit of a time). She was able to have visits home from time to time and she had renewed energy when we had to go back to the hospital.

Life with leukemia is isolated - not by choice, but because we have to be so very careful that Bianca does not develop infections. Little things that did not matter before (like a runny nose) could now become quite serious. She is not able to do the things she used to like swimming or ballet and it is heartbreaking that she keeps talking about having to stay away from sick people and "when I am all better I'll be nearly 7". We can't plan anything anymore and we now live life each day at a time. A simple thing like going to the shops have to be thought through.

What the CCDHB forget is that whilst Bianca is a patient on their books, it really affects us as a family. This is not just an operation - in, out and over and done with, it is a 2 year process, a lifestyle change and sometimes I wonder what we will look like and what we will be like at the end of it. We work so hard to provide a happy and stable home to our kids, that to be forced to "split up" would just be so unfair. They really have to consider the emotional aspects of it and what Bianca will be like if they had to take the little bit of stability that she has left away from her.

At this hospital the nurses and doctors have become friends. It took us a really long time to get to the point where she is actually excited to visit the hospital, in the beginning she would scream each time they just brought in the blood pressure machine and today she holds out her arm and even wants to press the buttons herself. So for her to have to get used to new people and a new place would just be so difficult and really so unfair.

I truly believe that Bianca is coping well, because we are in a position where we can incorporate "normal things" into each and every day. We are able to find things to laugh about, we are able to let Bianca do big sister things. Terence and I feel happy because we have each other (even if we have to stay at Wellington hospital, we can still see each other every day) and that has a positive effect on Bianca.

I really wish the CCDHB would take notice of these aspects and realise that there is more involved than just treating her to get better. There are no short-cuts, the treatment will take 2 years and 2 years is a long time for a little girl to get through.

We have made the decision to stay positive throughout this process. We will take one step at a time and we will get through it. But it will be so much harder if we were not in a position to stay together. I really feel so sorry for those parents who were forced to split up their family unit for long periods at a time. It really is so very unfair.

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