I didn't plan another update tonight, but...

Sometimes you might notice a headline in the online version of the newspaper and it would be something about child abuse or animal cruelty or something like this and you just know how incredibly hard it would be to read the article, so you ignore it. You push it aside. You focus on the happier articles, the ones that would seem less traumatic. I guess in a way it must be denial. You don't want to know that child abuse or animal cruelty exist. You don't want to know the details and so it is easier to close your eyes and pretend the article wasn't there. Of course it doesn't mean it didn't happen. It is still happening, but just easier to look the other way.

And I guess it feels a bit like this dealing with the CCDHB. To them child cancer is the budget that has to be cut, not unlike a corporate company that chooses to cut staff training out of its budget as a way to save money (of course they will never admit to it). So by cutting the service (which it seems very very likely at this stage) they can pretend it doesn't exist. They can close their eyes and focus on the other, happier areas. But it still carries on for us. Our children deal with this day in and day out. All they know is that one day they felt fine and the next they were sick and many of those children do not remember a time before having a port and before having to swallow tablets. Certainly when I mentioned to Bianca that at some point her port will be taken out, she looked at me as if I was mad. As far as she is concerned, it is a part of her and she can't imagine life without it.

Tonight I saw a segment on 60 Minutes (I think there might be a video clip by tomorrow) and I feel so incredibly sad and heartbroken for the families there who are once again fighting to keep the unit.

What the CCDHB forgets is that they are dealing with children here. Children who in an instant lost life as they have known. Children who suddenly have to grow up and be brave - all the time. Children who suddenly lose their security, their stability and are thrown into a world that doesn't make sense. A world where so often their control is taken away from them. I remember the one time when I had to watch Bianca get an NG tube through her nose, how she struggled, fought, how she desperately tried to stop it, and in the end all she could do was to scream. She seemed so defeated in that moment. I felt that I let her down that day, I was supposed to protect her from people who force her to do things she doesn't want to do, I was supposed to stop people hurting her and I couldn't. I had to stand there and be tough and say to her that she needed to be brave.

The CCDHB doesn't seem to realise how incredibly exhausting this journey is. For most of us this journey doesn't last days or weeks, it lasts months and often years. And when you hear the diagnosis "your child has cancer" it becomes a "make a decision now" kind of situation. You don't have the luxury of time to even really think about things, to ask another opinion. And as happened in Wellington around July 2007, some were given 24 hour notice to pack up and go to another city away from everything familiar, away from their family and friends and the support structures that they so desperately need, just because the CCDHB failed to retain their staff.

For the past nearly 2 years since we've been diagnosed, parents have been fighting and fighting to keep the service in Wellington. Why it has to be the parents' job on top of everything else I really don't know. It wasn't enough to have to fight for your child's life, no we've also had to fight to try and retain a service for our children. To try and get them better. And for 2 years the CCDHB has pretty much not cared. Or if they did, we never really felt they did. But unfortunately it is not as if you can just stop going until they sort their issues out, they know that parents will take whatever they throw at them.

At first they didn't seem interested in hiring a new person after Doctor Liz left and we ended up with only one specialist to try and do the job of two full time specialists. Now a good plan would have been in the first instance to ensure that you retain the specialists you have, but failing that when the first one resigned, surely then it would make good business sense to start the recruitment process (especially as one would imagine that it would take long to hire a new specialist). But no, instead Doctor Anne was left to just work incredibly long hours and weekend after weekend she would be there. So instead of hiring somebody, the CCDHB decided that they would far rather spend all their time doing some stupid report to decide if they could be bothered keeping the service.

Of course media took a huge interest and so in typical CCDHB fashion they did what they could to get the media and people off their backs. They made promises. Promises of a dedicated unit, promises that they would hire new oncologists, promises that these oncologists would be able to help get this new unit up and running, that they would be able to use their expertise to get this unit up and running, they promises a third oncologist, but only once the new oncologists hired this person as it would be important that they have input in this. They promised to move the child cancer unit into one of the old buildings (because they never bothered to include this unit in the design for the new building, why would they, they probably never really wanted to keep the unit anyway). And in typical CCDHB fashion they broke a lot of those promises. Fair enough they hired two new oncologists, but they only managed this because these people believed all these promises that were made to them. How would you feel if you took a job based on certain promises just to find out after you started that none of it was going to happen? I'd be pretty upset too I guess.

And one thing that the CCDHB doesn't seem to realise is how important a positive attitude is in the cancer journey. I firmly believe that it did Bianca the world of good to have access to her dad and baby sister anytime she wanted when she was stuck in hospital during her 113 days in hospital to date. And how on earth would we have coped if we got sent away for long periods of time? Caitlyn was 3.5 months at the time, we have no family here. We only had "us" to rely on, to stay focused and stay strong. So to send families away, how does that affect their ability to cope with this journey?

Of course the CCDHB sits there and deny that any of this is as a result of their lack of effective management skills. I firmly believe that this is as a result of their inability to retain their staff and for breaking the promises that they made, that they have lost these valuable specialists.

If they were truly committed why:

Did they wait for their last specialist to resign before they started the recruitment process? You could have always started the process, and during that time completed the report. If you find that the service wasn't going to remain a full service, then you could always stop the recruitment process, but if you found that they wanted to keep the service as they assured us, then at least they would have attempted to employ somebody before the final specialist resigned.

Why did they never include the paediatric oncology unit in the plan for the new building? They say that they have made huge improvements to the child cancer unit, but when we left, whilst the cancer patients had their own dedicated day room, it was still placed in such a way that any other sick person would still walk past the door, putting these kids at risk.

Why did things only happen when the media took an interest? Surely if you were committed you would have been proactive and not reactive.

And of course they keep saying that there are not sufficient numbers. Not sufficient numbers? But what if you raised the age group from 15 to 18 years old to fall under the paediatric oncology? What if you increased the region that you included in your unit? And why is it that when you look at the numbers Wellington has actually been dealing with a bigger number of patients than Christchurch who has had 2 permanent specialists for around 10 years (see article here)? Why is it that Christchurch and Auckland seem able to retain their staff, but Wellington seems unable? Certainly the Wellington doctors came with the same amount of passion, they also had a desire to help children who are desperately ill, or is it that the answer lies in the better management and leadership of the other district health boards and their commitment to making sure their units remain stable and functions well?

They keep saying the doctors had unrealistic expectations. I'm pretty sure the doctors would have done their research, they would have known the hospital was smaller than where they came from and they would have based their decision on the very specific promises that were made to them. Promises that were broken after they arrived. These specialists wouldn't have taken the decision lightly, they would have been objective about it - after all, they moved to a new country with their own child.

You know, we were worried about just this when we decided to move from Wellington to Auckland last year. We lost faith in the CCDHB, we got tired of fighting and fighting and fighting when all we wanted to do was to focus on getting Bianca better. And then when they employed their specialists we were thrilled. It reassured us that when the time came to move back to Wellington (after all Terence's main office is in Wellington), things would be settled and stable and Bianca would be able to have access to a specialist. Of course we wanted to stay in Auckland at least until Bianca was done with treatment so that it would only be follow-up care from then on. But now with the unit at risk of closing again, it places us in a tricky situation again. Suddenly we realise that end of treatment is only 4 months away, but then it becomes a waiting game for a number of years still to come. There will be a chance of a relapse (of course we hope and pray it doesn't happen) and if something like that happend and we moved back to Wellington and they did not have a unit, what then? Then we will be shifted to another city like so many other families have done before and might very well be doing in the near future. There are just so many "what ifs" ahead of us. We just don't know what lies around the next corner.

What makes me particularly sad is that the CCDHB had this one opportunity to fix things, to make the unit work, to prove to everybody that they were as committed as they said they were, but now? They've lost this one opportunity they had and who knows if they will get another chance, or even want another chance? Perhaps if they closed their eyes, shifted all of the child cancer patients somewhere else, make it somebody else's problem, perhaps then (in their mind) the problem doesn't exist anymore (even though in reality it does). Their budget would look good and they could then focus on their "happier" situations again. After all, these are just patients, numbers on their computer system, it doesn't matter that child cancer affects parents, siblings and the child, it doesn't matter because Patient number 1 and 2 and 3 and so on will not be on their books anymore and so the problem will not exist to them anymore.

And I sincerely pray that none of them ever have to walk in our shoes, because once you are forced to wear that pair of shoes, you don't get to take them off. It doesn't matter how uncomfortable, ugly, heavy they are, you have to wear it day in and day out.

And all I can do is to plead and beg on behalf of all these current and (sadly) future families that they find a solution to keep the full service in Wellington. Please just for once place yourselves in our shoes. Imagine you were us, what would you want for your child? If you were us, what sort of service would you want, or would you happily go to another city that is at least a 1 hour flight or might be as much as a 9 hour drive away week after week after week. For the first nearly 6 months Bianca had to get intensive treatment every single week, she was often neutropenic where she needed to be away from other people, in the first 8 months she spent a total of 106 days in hospital with various infections, one of those stays were 34 continous days and for some of that time on oxygen. She had a severe reaction to one of her chemo drugs, she had kidney stones, she had shingles. In our case we just signed for a 1 year fixed term agreement on our rental home just before Bianca became sick. Financially things became harder as I had to give up work and in between we had this tiny little baby who required our full-time attention. If we had to go to another city for treatment, I have no idea how we would have coped.

Please CCDHB, Health Minister, somebody - please for the sake of these children who didn't choose to get sick, who endure more than many of you would in a lifetime, please find a solution and make the unit work.


Anonymous said...

Hi Lea,
I watched the programme last night too. It was so very sad. But it made me so grateful that we are in Auckland and that Peter does have leukaemia and not something worse. I so feel for those families down in Wellington. It is totally unfair and wrong what they are going through.
On another note, you talking about watching Bianca get a NG tube made me think about all the times I am holding Pete down for procedures and he is screaming and looking at me, trying to tell me with his eyes to save him from it. Every port access is torture and I so wish I didn't have to put him through this stuff. We are so luckly in that his life is being saved, but it doesn't make it any easier.

Amanda said...

I have no words Lea, it's just so sad.

Anonymous said...

We are so fortunate to be able to do this in private healthcare. It is hard enough as it is.

((((hugs)))) I don't have any words.

You are right. If the bureaucrats had to walk in our shoes things would've been a lot different.