Facials, massages and bellydancing!

Yesterday I had the most fun day out. It was a "me" kind of day with CCF. They had a mum's only day and it was a day of lunch and pampering. It was so good to see some of my CCF friends and to catch up with them. So I ended up getting a massage and a facial (and some mums got their hair and make-up done too). That was so cool and so relaxing. And then there was a bellydancer who entertained us a bit. Wow, she is so good.

Of course as it often happens they wanted audience participation (with outfits) and so a bunch of us gave it a try. Let me tell you, it looks way easier than it is and I discovered I had muscles where I didn't know I had muscles. Trying to pull in your tummy and bum and at the same time swinging your hips and pointing your toe - needless to say it proved fairly challenging. But, I'd have to say, I can't remember when last I laughed as much as yesterday - it was pretty cool.

I know it doesn't look like I was pulling in my tummy, but believe me I was!!!

The only huge frustration was my stupid phone. When I got there I sent my friend Christina a message (or try to), but it kept freezing on me. We caught up after the mum's day out and I needed to let her know what time the function would finish. So then the screen would go all blank, it would lose signal, I would wait for it to reset itself, then click on message and it would say "message memory not ready" or something like this and finally will get back to sending a message, just to find that it wouldn't let me click on "send" Urggh. And so it would repeat it's stupid reset action until finally my message sent.

So when my phone was still doing the same stupid reset action this morning, I was about ready to throw it out the window. Terence agreed to have a look at it and finally established that my inbox was too full. Really? I didn't know that my phone couldn't handle 739 messages in the inbox. Okay, I didn't know it had that many messages and I never got a warning that the inbox was too full. And now that he deleted them all, my phone is working just fine. So I think from now on I'll just have to clear it more often...

Arts and crafts

Bianca has been fairly busy the last little while, but in a good and exciting way. She still love doing her sewing and they make the cutest little things. Currently they are making a bag of some sorts to put their sewing stuff in, so not sure when I will get to see this project. The last one Bianca finished and brought home was a little cat. She is so incredibly proud of herself, and we are too!

Then during last week Bianca and her class went to the Honey Centre not too far from us. I went along as a parent helper and had 4 kids in my group including Bianca. First we listened to them explain all about the hives and the bees and the honey. They showed what their hives look like and how they would extract the honey. They passed around some wax and pollen for us all to look at and the one little boy even had a chance to dress as a beekeeper. After this the kids had a chance to make a candle from beeswax. It was so easy and Bianca especially loved making it.

Afterwards we all went into the shop where we could see a display of bees (behind glass, thankfully).

And then she couldn't wait to let her dad light it at home.

Oh, and we've lost another tooth tonight. This time she didn't swallow it (and Terence helped it out a bit because it was pretty much falling out by that time), so no doubt we will get a visit from the tooth fairy tonight...

Eight things...

Last week I got tagged by Sharon.

To do list (i.e. “the rules”):
1. Mention the person who tagged me.
2. Complete the list of 8’s.
3. Tag 8 bloggers & tell them I tagged them.

Eight things I am looking forward to:

1. Finishing Bianca's treatment in September - I can hardly wait, although it will be pretty scary too!
2. Getting a new job - if people can look past the leukemia we are dealing with
3. Tomorrow - it is a public holiday and Terence will be home with us
4. Bianca's very first school play in June
5. Bianca's birthday party on the 6th of June (although the cake is still giving me headaches)
6. Getting a lifestyle block / farm close to the city
7. Getting alpacas (and other animals) for the lifestyle block / farm
8. Finishing Bianca's birthday cake

Eight things I did yesterday:
1. Done some housecleaning
2. Met up with some great friends at the CCF Mom's day
3. Got a massage at the CCF Mom's day
4. Got a facial at the CCF Mom's day
5. Got frustrated with my phone that kept freezing on me
6. Tried bellydancing and haven't laughed so much in a long time (along with realising that pulling in your tummy and bum at the same time as trying to swing your hips are pretty tough).
7. Met up with my friend Christina
8. Got up several times in the night for Caitlyn (sigh!)

Eight things I wish I could do:
1. Find some time to start my hobbies again
2. Learn to paint
3. Go on a nice holiday somewhere
4. Get that lifestyle block with alpacas and other animals
5. Decorate cakes like the professionals do
6. Eat sushi - it always looks so nice when other people eat sushi, but I really can't stand the taste
7. Be a professional photographer - I've always like photography and wish I had the talent that some people out there have
8. Find a nice job soon

Eight shows I watch:
1. Shortland Street
2. Amazing Race
3. Hell's Kitchen (it just finished)
4. American Idol (it just finished)
5. Mitre 10 Dream home (it recently finished)
6. Grand Designs (if the TV is on at that time)
7. Gilmore Girls
8. Whatever the kids are choosing to watch - Curious George, Winnie the Pooh, Lilo and Stitch, Dora, Thomas...

Eight favorite fruits:
1. Grapes
2. Bananas
3. Mandarins
4. Oranges
5. Bananas
6. Peaches
7. Pears
8. Kiwi Fruit

Eight places I’d like to travel:
1. Parts of NZ I haven't been to yet (and there are many!)
2. Cook Islands
3. Samoa
4. Dubai to visit my aunt and see what it looks there
5. Australia
6. Disney World in the US
7. The UK to see Buckingham palace
8. Not sure where else...

Eight places I’ve lived:

In South Africa:
1. Sasolburg (I was born there)
2. Vanderbijlpark
3. Newcastle
4. Johannesburg (Midrand)

New Zealand:
1. Auckland
2. Wellington

People I’ve tagged:
In no particular order -

Annie Fox


Sometimes it is like a door slamming shut

It's been a fairly busy week. Apart from the usual looking after Caitlyn on the days she is not at daycare, tennis on Wednesdays, getting Bianca from school and so on, I've also been looking for a job. It is a bit scary too. Especially this time of the year, but more on that a little later so just watch the space.

I must say things have certainly become quite tough on the job front. When we first arrived there were lots of jobs and at times I had several options to choose from. Now? Not so much.

And of course I have this gap in my CV of most of 2 years to try and explain and I've realised how often when people learn that it was because of Bianca and her leukemia, how quickly they then turn me down.

Earlier this week I struggled a bit with this after a call from an agent. She asked me what it meant for an employer that Bianca has leukemia and I mentioned that I wanted to explain why there was a gap in my CV, but also an employer needs to know about this because there will be times that I will need time off. I then explained that Bianca is doing really well, is well settled at school, only needs to go to hospital once a month and that I can share this with Terence, so I would not have to take a day off every month.

She then said "well, I've got lots of CVs to go through and I will get back to you if you are suitable". You know how when you go and look at a rental place and it isn't quite what you are looking for, and you tell the estate agent that you still have some properties to go and look at and that you will call them? Yes, it felt a bit like that. So then I mentioned that if she thought I was not suitable for the specific positon I applied for if she could please consider me for something else that would be suitable, to which she replied "I understand what you are asking". Not "I will keep your details on record", not "I will keep an eye out", not "let's meet and I can get to know you better". And then afterwards I realised that she didn't have the normal reaction of "I'm so sorry to hear about your daughter, how is she doing now?", no it was "so what does this mean to an employer?"

So yes, I felt pretty down after that call. It is hard when you not only compete against other applicants, but also, that I guess, people look at the leukemia situation and see that as an obstacle rather than discuss with me to try and understand how that will work in a job situation. But anyway. I'm sure the right job will come along when I least expect it.


I told you so...

I'm not going to say much on this issue as I've said so much before. All I can say is that it is unbelievable how they actually thought parents were too "stupid" to see through their empty promises... Personally I think it is time for the Health Minister to step in and take over (that's my feeling anyway) - if the other hospitals can retain staff, then there is no reason why CCDHB couldn't do the same thing. The laughable bit in the article is Kaye Hudson who still tries to convince everybody just how committed the board is. (almost like a cheating husband telling his wife "but I'm committed to our marriage honey"). Funny how they always seem to blame numbers and things, how the doctors were so unreasonable in their expectations, and not actually how the new doctors had to keep asking for things that were agreed when they were hired and how their request for extra pharmacy time to ensure patient safety was ignored.

Here is the article:



Sometimes we forget

Sorry for only posting now. At times we get a bit on the busy side and distracted and then the blog has to wait.

At times we forget how quickly things can change, and on Friday we were reminded that we should never get too comfortable. Bianca had a play date on Friday with one of her best friends. After I got her, we had to go to the shops and suddenly she started feeling a bit tired - to the point where she wanted me to carry her and so I convinced her to walk just a little bit further as the car wasn't too far away. Got home and she complained that she felt cold. Very very cold. So we took her temperature and it was sitting in the mid 37s. Of course above 38 means a visit to the hosptial and so the whole of Friday night we anxiously checked her temperature several times in the night (okay Terence did). Thankfully it never went above 37.8 and went down at some point during the night. Thank goodness. I know the ward is all pretty and bright and new, but we definitely do not want a stay there at this point in time.

I have to say that I am so grateful Bianca is getting her monthly IVIGs. Right now Caitlyn has a bit of a cold and if it wasn't for the IVIG, I'm sure Bianca would have been pretty sick by now. I'm just so thankful!!!!

So the rest of the weekend was pretty relaxing (apart from getting up for Caitlyn a number of times at night thanks to her cold). Terence will be writing about what we got up to on Sunday so watch the space.


No matter how big the race...

Yesterday Bianca had a cross-country event at her school. Now for Bianca's age group it was really just around the field area. When I read on Bianca's teacher's website that they will have the event this term I felt really concerned. I knew that participation would be expected and with the one chemo drug in particular (Vincristine), Bianca really struggles with running. Now a lot of kids her age are not all that good at running, but when you see Bianca runs it is obvious that she is not at all able to compete in a race.

So I wrote to the teacher expressing my concern that Bianca would be set up for failure and that she would not cope with the activity. I am so impressed with Bianca's school and her teacher. The teacher kindly explained that they never force Bianca to run in any of the fitness activities. She always has the option of walking with a buddy as there are always another child who is unable to run for whatever reason. But for this race, Bianca would be given the opportunity to walk with a buddy or be a special helper.

I had a nice chat with Bianca explaining her options and we talked about how it isn't about winning, but it is about participation and having fun. We talked about how some of us are good at one thing and another good at something else, but we can't all be good at the same thing. Bianca looked at me with a "what-do-you-mean-be-a-helper?" kind of look in her face. She assured me that she wanted to participate.

And so yesterday arrived and I reminded her it would be okay to walk and that I expected her to do her very best (not to be the best in her group). It was at this point that another little boy in Bianca's class jumped in and said "it is all about the winning", so I quickly reminded Bianca that it was about participation. I didn't go and watch the event. Partly because I had Caitlyn with me, but also because it would have broken my heart to see her struggle so much more than the other kids.

When I went to school to get Bianca I learned that not only did she choose to run, but she finished it, despite being completely last. The teachers and I are so incredibly proud of her for doing something that is much harder for her than it is for other kids. So yesterday Bianca was awarded the Star of the Day in her class for starting AND finishing an activity. I have one amazing 5 year old, that's for sure!


Not a very good day today

Today wasn't a very good day (apart from Bianca losing her tooth, that was pretty exciting).

Today I watched the most beautiful photo montage that Kyah's mum did. It's been 6 months since beautiful little Kyah passed away. And so I sat there with tears streaming down my cheeks. It feels so incredibly unfair that they have to walk this road. I don't know if I would be allowed to share the link of this montage, but just know that it was beautifully done. and incredibly moving. Please keep Shanell, Jason and the boys in your prayers so that they may find comfort and strength to walk this road that must be the hardest thing ever. And please visit this fundraising site that Shanell and 3 other mums set up to try and raise money for the Child Cancer Foundation.

And then barely an hour after that, I got a call from a very good friend whose son also has cancer. He has had a rough journey so far and today they found out he relapsed. It is so incredibly heartbreaking, so unfair... My heart goes out to them and I so wish there was something I could do. Whilst I can't share too much of their details at the moment, I do want to ask you to keep them in your prayers and in your thoughts.

I really hate cancer. I hate what it does to families. I hate how it puts kids through so much. It is such an exhausting, devastating thing. I really feel down tonight. Cancer really sucks!!!

But cancer is limited too, no matter how hard it strikes:

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Source: What Cancer Cannot Do (Author Unknown)

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.