Funky Monkeys and a disco

Last week we went to Peter's Make a Wish party. He is the most adorable little boy. He wished for a playground and as part of his wish he had a live performance by The Funky Monkeys. They were so cool. They are so down to earth and the kids absolutely loved them. Bianca had the best time ever participating in the audience and Caitlyn? Well, Caitlyn loved the swing on the playground and the sandpit and the food. Bianca loved the food too - not surprisingly because she was on steroids.

Then on Friday Bianca had her school disco. She had such a great time. I didn't go, because running after a 2 year old in a hall full of people - not my idea of fun. So Caitlyn and I stayed home. Terence helped with the BBQ and Bianca briefly danced with some of her friends, but being on steroids, was more interested in the stall selling chips (crisps for those of you in the UK), ice cream, and other snacks and took a break to get a tattoo done on her face and her hand.

It's lost!

Tonight Bianca lost her tooth. No, really lost her tooth. For a while it's been wiggly, but still it sat there and so yesterday we thought that it was going to fall out, but it still just sat there, stubborn, even when we tried to "help" it out a little bit. And so tonight after she ate her supper and had her after-supper-before-chemo medicines, Terence noticed that her tooth was missing. It was gone. And we have no idea exactly at which point it fell out tonight, but it is gone. She probably swallowed it when she took her meds. I feel pretty disappointed, I know it would have been important for her (and me) to leave it under her pillow tonight. In the end, she wrote a little note to the tooth fairy "sorry my tooth is gone". I'm sure the tooth fairy will understand if there is one less tooth for her to build her house (or whatever it is the Tooth Fairy does with all these teeth she collects).

The tooth next to this one is also a bit wiggly, hopefully we'll get this one...

Edited to add: We tried to get a photo, but unfortunately it doesn't come out very well, because it isn't quite a toothless grin - she already has the adult tooth behind this one and so on a photo it looks as if the tooth is still there.

It's amazing!

A while after we came they temporarily moved the oncology ward at Starship so taht they could remodel it. So that meant we would have to go to level 3 for our clinic, then go upstairs to level 5 for treatment. It wasn't the best arrangement, but we knew it was just temporary. Finally it is all ready and so this coming week the improved ward will be "open for business". This weekend we had the chance to go and have a look and I am so incredibly impressed.

It is beautifully decorated all along the walls.

From what I could gather there are 18 beds all in single rooms and 5 transplant rooms.

There is a parent lounge, a teenage lounge and a kiddies playroom and a very nice kitchen.

The daystay area is completely separate from the ward and within the daystay area they have a treatment room for children and one for teenagers (and you can even change the colour of the walls with specially installed lights along the walls).

They have a room with 5 beds for kids who have theatre on that day and then an infusion room for kids who need IV treatment but won't need a bed. That will enable kids to play or do homework as they get their treatment.

What I like about their new design is that they recognise the importance of emotional wellbeing and they also recognise that children and teenagers have very different needs.

I wish you could see it. All of us are so very impressed with this ward. Thank you Starship and everybody who made this possible. I just hope that with all the issues in Wellington, it won't be putting too much pressure on Starship and the available space.

What would you do with NZ$99,500?

And so the 11th creeped up on me. I knew that we were due for a visit to the hospital on the 11th and I even knew in the back of my mind it was today. But somehow forgot to book Caitlyn in for a casual session at daycare for today. And then on Saturday late afternoon I suddenly realised that "oops, I totally forgot to book Caitlyn in". So this morning I phoned daycare and thank goodness they were able to have Caitlyn today. Just imagine us sitting at the hospital for quite a few hours and trying to amuse a busy 2 year old, I get tired just thinking of that...

Anyway, got Bianca from school early and we went through to hospital for our usual blood test and appointment with Bianca's doctor. Bianca's counts are okay, but they kept her at the slightly lower dose oral chemo for now and we are due back again in a month.

I learned a few things today.

I learned that when Bianca gets to the last day of treatment (if all goes well 11 September 2009) then she will need to visit the hospital for a check up and to get her port flushed every 4 to 6 weeks until we've reached the 6 month mark (when, if all goes well, they will remove Bianca's port). Then for the remainder of our first year off treatment, she will need to visit the hospital every 6 to 8 weeks. The following year it is every 3 months. The following year after that it will be every 6 months and the year thereafter once a year until she is an adult. They will need to monitor her to ensure she stays well and to address any possible long-term effects such as with her heart, her growth and her learning abilities. And then when she is about ready to leave school one day, they will meet with her and discuss what happened, they will discuss any potential consequences of the treatment if any, because effectively this will all be a faint memory or perhaps not even a memory then (certainly I can remember snippets from when I was very young, but not really that much). She may very well have concerns or questions and so when she gets to that age, they will discuss with her the road going forward. They will also discuss things she can do to live as healthy a life as possible because there will always be some risk that she may develop a second cancer.

I also learned that it costs $500 a night in hospital (and we don't go to a private hospital) when you are admitted. And Bianca's stayed in hospital for 113 days so far. That is NZ$56,500 so far - just for staying in hospital. A blood test costs around NZ$300 and I'm pretty certain Bianca's had more than 100 of those to date, so that is another NZ$30,000 just for blood tests. An echo costs NZ$500 an hour (and I presume part thereof) and Bianca's had 2 of those so far, so that is another NZ$1,000. A PEG shot (one of the chemo drugs Bianca got in the intesive part of her treatment) is NZ$4,000 each time (and Bianca had 3 of those before she developed an allergic reaction and had to get a different one that consisted of 6 injections - one every second day), so that is another NZ$12,000 right there. So only for that the cost of Bianca's treatment comes to NZ$99,500 (for those of you in South Africa that is ZAR502,855.20). That is not the cost of getting her port inserted via surgery, any of the other chemo drugs Bianca's been getting these past nearly 2 years, or any of the more than 30 blood product transfusions, or the CT Scan and numerous X-Rays, or the 4 NG Tubes, the steroids, time in theatre with general anaesthetic and the chemo they inject through a lumbar puncture into Bianca's spine or the bone marrow biopsies she's had or any of the other countless procedures, clinic visits and tests. It is not the oxygen Bianca's been on earlier on in her treatment or any of the treatment she received to help her when she needed emergency assistance after her bronchospasm and her allergic reaction to her one chemo drugs. And I've lost count how many times Bianca received IV antibiotics. I think it would be quite shocking to know the full cost of Bianca's treatment to date. It is such a blessing that we are where we are, because in all honesty there is no way we could have afforded this kind of money for our daughter (although no doubt we would have done everything we could have to try find the money from somewhere if we had to). I am so incredibly thankful we have one less thing to worry about. So despite what people might say (and yes I'm not a fan of the CCDHB) people here have a lot to be thankful for in the medical treatment they get (in comparison to some other countries out there).

You know just last year I followed the blog of a little boy who lived in the Phillipines and there they have to pay for absolutely everything. Every single blood test, every single time in hospital, every single test, every single blood transfusion, x-ray, you name it. Unfortunately this little boy passed away simply because his mum was unable to afford a much-needed blood transfusion (and it isn't as if you have plenty of notice to try and raise the money for it, if you need it now, you need it now). Please could you keep all these other people in your prayers and in your thoughts, people who tonight are worried and stressed about how they will be affording the treatment to try and get their kids better and to give a chance at life. It is so easy to sometimes forget how much we have to be thankful for and how small our problems are in comparison to some others out there.

Moral of the story

Tonight we were busy with homework and the book Bianca got to read was The boy who cried wolf. Now most people probably know this story about the little boy who had to look after his dad's sheep and then because he was bored, called for his dad "wolf, wolf" and so everybody came to help just to discover that there was no wolf and so it happened 2 more times. After the third time, people realised that the little boy played a trick on them. So when the wolf suddenly came, the little boy cried for help, but of course nobody came because they did not believe him. So when Bianca finished her reading I asked her what she learned from the story and she said:

Bianca: "That the wolf ate the sheep"

Lea: "Yes... that's true, but what lesson did the story teach us?"

Bianca: "That the wolf was hungry and that it likes sheep"

By then it was fairly hard keeping a straight face.

Yesterday we did another blood test and neutrophils are now up to 1.1. Not sure what the platelets are, but we are due back at hospital next week for our monthly hospital visit (and dreaded steroids) so we'll do another test. In the meantime daily chemo remains on the same level.

Bianca also started a sewing class (with one of her best friends from school). It is really basic and aimed at little kids. Bianca had so much fun and she made 3 finger puppets. She is really proud of herself (especially after I told her that I couldn't sew when I was 5, and now in my 30s can't sew very well either). Don't you think this is so cute? Bianca's very first sewing ever - hopefully she'll walk in her Ouma (Granny) Amanda's footsteps...

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.

What did you do the past weekend?

Yesterday (Sunday) was National Alpaca Day. Recently I started reading up on alpacas and the more I read, the more fascinated I am with these animals. They are beautiful, gentle and oh so cute (well I think so anyway) and I have to say that right now my dream is to get a block of land and go into small-scale alpaca farming. Certainly it seems very manageable, they are low-maintenance animals and you can start small and the end result currently is that these fluffy animals are not bred for their meat, so Fluffy and Princess and all the other ones you get used to don't end up on somebody's plate. Alpacas are used for breeding and for their fleece / wool which people then use to make the most beautiful warm garments.

So we decided to visit two farms about an hour away from us. The scenery was beautiful and and so peaceful. And as I looked at all the green hills around us, I couldn't help thinking how often people say "when you move countries, the grass isn't always greener on the other side", but looking at those green hills - I'd have to say that I think we found when we moved from South Africa the grass really was greener on this side, and I'm not surprised with all the rain we often get.

At the first farm I had a nice long chat with Chuck from Kaipara Pines Alpacas. (Thank you Chuck with all your patience with me and all my questions). They have been doing this for 5 years and they have a really nice selection of alpacas. I have to say I really like the colourful ones best at this point in time and he mentioned that their black and grey ones are their most popular ones.

In the one smaller pen where they had 2 females with their babies on display (a baby alpaca is called a cria) there was a white one that's 2 months old and a black one that's 4 months old. They took the black one (Bianca said his name was Prince) out of the pen and we could touch him. He was so soft and fluffy and Bianca says he was her favourite. They make the cutest humming sound (not sure if that is an adequate description or not).

They also had some really nice products on display for sale.

We then went to the second farm - Waitakare Alpacas. When we got there we had a great photo opportunity that we simply could not miss.

We didn't get to see how they shear an alpaca, but we managed to see a demonstration of carding the fleece with a machine. This is where they prepare the fleece for spinning into yarn or for felting depending on the quality.

We also got to see a very quick felting demonstration and the lady demonstrated how you could make a scarf and they have the most beautiful ones for sale in their shop along with a range of other products. So I'll have to try this out at some point in time.

We were also able to feed some of the alpacas and initially I thought Bianca would be too scared, but she had the best time ever feeding them.

Caitlyn tried it once, but didn't want to try again and so we didn't get a photo. She had a great time running around though.

The girls had such a great time and loved sharing hugs

On the way back Bianca kept making a humming sound ("hmmmm, hmmmm, hmmmmm") and pretending that she was an alpaca. And apart from Caitlyn getting car sick and getting sick all over herself, I have to say that it was a great day for us to have this outing!

They grow up so fast, don't they?

We've always known that Caitlyn is taller and bigger than some of the other kids her age and it doesn't surprise us as she was 4.7kg (10.3 pounds) at birth (and took just over a week to outgrow her newborn nappies).

Just recently we had a BBQ here in the new complex where we stay and met up with some of the other people who live in the units around us. There was another little girl and we thought she must have been around 2 years old too, because she was slightly smaller than Caitlyn. Turned out she just turned 3!

Anyway, Caitlyn wanted to try on one of Bianca's dresses. Bianca loves this dress, but it is really too small for her now. It is a bit on the short side and too tight around her arms and so probably time to put this aside for Caitlyn anyway. This dress is a size 4 / 5 and so Caitlyn tried it on and it fits! We couldn't believe it.