Check mate!!!

Yesterday we had another blood test for Bianca as her platelets were a bit on the low side around 2 weeks ago. We went to a local lab because there isn't much point to drive all the way to the city just for a test that will take all of maybe 5 minutes and since we didn't need an appointment, the local lab was a better option. This also meant that we could go straight after school and she didn't need to miss any time at school. Got the results today and Bianca's platelets are slightly up to 94, haemoglobin slightly down to 106 and neutrophils down to 0.51. Bianca's doctor then decided to lower her daily chemo dose a little bit and we need to do another blood test next week.

So now we are just hoping that Bianca doesn't pick up some or the other bug with her lower neutrophils.

About a week ago Bianca begged her dad to teach her how to play chess. So off I went to the shop in search of a cheap little chess set. There were quite a variety to choose from and there was a glass set and one that is supposed to teach kids how to play and one in a tin and finally Bianca chose one that came as part of a set of 12 different games like ludo, snakes and ladders, backgammon and so on. I must say Terence is really good at teaching Bianca how to play and she had the best time ever. Of course then it was time to go to bed and the set was put in the closet until tonight when Bianca insisted on playing again. I was so impressed that after playing only once, she was able to remember how to set the board up tonight (except that she had her dad's queen in the wrong position) and she even remembered what all the pieces were called. We had to help a little to remind her how to move the pieces, but for a 5 year old I think that is pretty impressive. Terence doesn't play very competitively with her yet (I should know because he doesn't show any mercy when I play chess with him) and Bianca exictedly said "check" each time and when she finally could say "check mate" well you should have seen her face. And just as fast as her face lit up, her face fell into utter disappointment because it was time to pack it up and go to bed (and she was all ready to play a second game). Oh well, at least the excitement is there and certainly tomorrow there will be a chance to play again.


A school project

After Bianca won the elephant yesterday, she decided to take the toy to school to share as part of their news session. She was so excited. So then when I got her from school this afternoon there was a little note in Bianca's homework book asking Bianca to make a poster with some facts about elephants, and this is what she made this afternoon:


What do elephant eggs look like?

I've been meaning to come and blog, but just couldn't get myself to actually come up with anything remotely interesting to blog about. I guess that is the "problem" when you are on maintenance and you have less of the drama of the intense phase of the treatment. But we are not complaining, we like that we have quieter days too. We are still busy, believe me, and when I look at my to-do list then I sometimes wonder why I couldn't have more hours in the day, but it is a different busy. It has more ordinary stresses rather than being stuck in hospital all the time or dealing with complications.

Now during the weekend I was busy filing some of Bianca's hospital documents. I like to keep her blood test results, her next appointment documents and so on all in one file so that I don't somehow misplace it. And so as I was filing I decided to read through some of the stuff that happened so long ago. I think there were a few times that she was really really sick and we just didn't know the full extend. And as I sat there reading all I could think about is that this is her story. This is my daughter's life summed up for the past nearly two years. Okay, fair enough, the blog is too and so are the beads, but this is from the doctors in their big medical words (like panhypogammaglobulinaemia) (remember that word for the next time you play hangman) and descriptions of why she was admitted to hospital and so on. And it feels so unreal that there once was a time when I had no knowledge or understanding of blood test results, and suddenly we live our lives according to that, we don't make decisions without that, we can see some good results, we can see some not so good results.

But I'm rambling. This morning I realised we had ants in our kitchen that is on the second floor and they somehow found their way through an electrical plug point in the wall. I mean how on earth did they find our kitchen? So I'm hoping they will soon get bored and go someplace else (now wouldn't that be nice).

After my ant discovery we all got ready and then left for the Zoo. It was the Camp Quality Summer Camp reunion gathering. On the way it was raining quite a bit and I thought that going to the zoo on such a day wasn't really the best plan, but by the time we got there, the rain started clearing up which was great. The kids absolutely loved it and I must say that Caitlyn totally surprised us as she was so good at the zoo (we sort of anticipated running after her, but she listened so nicely).

Interesting fact - some of the parrots (the Mackaw type) at the zoo have the same intelligence as a 2 year old. We found ourselves nodding our heads when the lady was explaining about how they have to work with these birds i.e. if you have more than one (and they have 3 in the enclosure), then you need to give them all the same, otherwise there will be "arguments" (that sounds so familiar).

We walked through the Kiwi Enclosure and wow, that was so cool. We got a really good view of it. Afterwards we took the kids to a free show they had at the show with a "secret agent" theme. It was perfectly aimed at Bianca's age group and she was totally involved in the show calling out answers whenever they asked a question, giggling at their antics and when they wanted a volunteer to go up to the front, she was the first to stick up her hand.

Bianca had to compete with the one Secret Agent (who was a mouse, or a guy dressed us a mouse) to lift up some items and the mouse really struggled. Bianca thought it was hilarious as she could pick these things up with no effort at all (obviously) and afterwards told me how she thought this mouse had weak muscles. For her effort she won a cute little toy elephant that she named Trunk and decided it was a girl.

Here is Caitlyn (with red mouse whiskers) participating in the show:

Then we made our way to the Old Elephant House where we met up with the Camp Quality people. It was so good to see some of the people that we've met since coming to Auckland and they treated us to a sausage sizzle and all the kids who went on camp got a book with photos of their camp. That was just so special and something that will be so cool to keep for Bianca. Thank you so much Camp Quality.

At the gathering Bianca got her face painted like (yes you guessed it) an elephant (after winning a toy elephant, this is now her new favourite animal):

Here are the kids climbing on the Tuatara display on the way home (Bianca with her elephant face paint):

And on a final note, Bianca had some really interesting questions for us as we were walking around the zoo:

What do elephant eggs look like? (Hmm, no elephants don't lay eggs)

How big are baby elephants? (They are really big)

Why are elephants so big? (I'm not really sure, maybe this is just the way they are made)

Why do elephants need tusks? (I think it is to fight)


Are there any photographers out there?

After Bianca was diagnosed and somewhere along the line, I "met" Felicia through our blog. I guess that is certainly the beauty of technology that it can bring people together despite the physical distance of being in different cities or countries.

From what I understand Felicia started the concept of "The Littlest Heroes Project" and this is such a great initiative where photographers offer photo sessions to kids living with serious illness and their families. I've seen some of the photos that Felicia has taken and all I can say is "wow"!

Years ago I tried to get into photography, and even tried doing a correspondence course, but I got stuck at the first assignment on capturing shadows on buildings and streets and so on. It was not so much the actual capturing of it - I mean really, anybody can take a photo of a shadow, but to do so with creativity and imagination - well, that's not so easy (especially if the assignment requires you to write down the location of the sun, time of the day, shutter speed and who knows what else), so I got distracted and I put my photography dreams to one side. I do love taking photos though (and do dream of the day that I might be able to try again) and we have thousands on our computer right now and whilst they might not be particularly good, they do have special meaning to us. I do sometimes wish I had better skills and equipment to capture aspects of Bianca's treatment or of the kids doing the things they do.

But back to the point of this entry.

Felicia wrote to me on Facebook and asked if I could forward a message to some photographers here in New Zealand. She has already involved some photographers in the US and other countries and is keen to include New Zealand in this initiative too. So if you are a photographer or if you know of somebody who might be interested (and even if you are in a different country), please do have a look at the website and see if this is something that you or somebody you know might be interested in. Personally I think this is such a special initiative!!!

PS - there are 3 photographers so far here in New Zealand who showed an interest, so thank you very much!!! Wouldn't it be great if we could cover most (if not all) of the major areas here in New Zealand?

Oh wow, an award!

Thank you so much Amanda for this award.

I really enjoy following Amanda's blog because of the sincerity, of how much she cares and her honesty. Thank you!

Now for the rules for the award:

Put the logo on your blog or post. Nominate the blogs with great attitude and/or gratitude. Be sure to link to your nominees in your post. Let your nominees know they have received the award by leaving them a comment on their blog. Be sure to link this post to the person who nominated you for the award.

I would like to nominate some of my favourite blogs at the moment, there are many more, but these ones in particular have special meaning to me:

Suzanne at Krokkenoster
Renee at Life with my Special Ks
Carole at The Eilertsen Family
Jacki at Counting my Abundant Blessings
Del at Relish
Alma, Becs, Catherine and Shanell at Funrazor 09

And of course I'd very much like to include Sharon, but she has received this reward from somebody else already.


The one thing Bianca really really wants...

is to have long hair. Hair that she can tie up into ponytails. Sometimes she tries to put some pretty clips into her hair, but of course it doesn't work so well with her short hair that is fairly thin at the moment.

She longs for September when her hair should finally start growing back properly. The day that it starts growing longer will be the day that I will buy her a whole box of hair clips, ties and bows.

Tonight she put a fairy skirt on her head and asked me to tie it up with a hair tie, and then she proudly showed it off to her dad - "look daddy, look at my hair".


I simply cannot wait!

After today I am sure that this week wasn't so much a weird craving week (although there is still tomorrow and anything is possible), it was a combination of a sore tummy, clinginess, sadness and extreme hunger (like in Bianca asking for food every 5 minutes, which would be okay if it was healthy things she wanted, but the only things she seems remotely interested in is popcorn, chocolate, yoghurt (okay so that is healthy) and crackers).

When it was time to dress Caitlyn this morning, Bianca went and got an outfit for Caitlyn. She spotted one of Caitlyn's skirts. A colourful, long one. And Bianca took an instant liking to this skirt... but unfortunately at that point Caitlyn spotted it and insisted on wearing it. I showed Bianca that it said "size 2", but Bianca insisted that it would fit her (which fair enough it does). She offered Caitlyn another skirt, but when Caitlyn still insisted on that particular skirt (despite me offering Bianca one of her own skirts), she went to her room and sat there sobbing her little heart out that her 2 year old sister did not want to share the 2 year old's skirt. And of course because this reaction is most likely as a direct result of steroids, there really was no point in even trying to convince Bianca that she was being unreasonable and so thankfully at some point Caitlyn was willing to give the skirt up and happiness returned to our home once again - big sigh of relief!!!

But throughout the day Bianca became super-clingy and followed me around like a shadow, insisting to sit next to me, and at one point indicating that she felt tired, but she didn't want to leave me.

Oh the joys of steroids!!!!

I simply cannot wait until the last dose of steroids for this month when tomorrow night arrives - I simply cannot wait.

Our day 3 of steroids

Normally when we give Bianca's medicines we have to give her supper, then wait 2 hours, then the medicines and then she needs to wait one more hour before she can eat again. So last night went a bit like this after Terence gave Bianca her medicine:

Bianca: "I'm hungry"

Terence: "I know, but you have to wait for an hour before you can eat again"

Bianca: "What time is that?"

Terence: "It is now 19:20 and you have to wait until the clock says 20:20 before you can eat again"

One minute later...

Bianca: "I'm really hungry, how much longer?"

Terence: "I will tell you when it is time, it is not time yet"

One minute later...

Bianca: "Is it time for me to eat yet?"

Terence: "Not yet"

Bianca: "How much longer?"

Terence: "Well it is now 19:22, and when the clock says 20:20, it will be time to eat"

One minute later...

Bianca: "I'm really hungry, can I eat yet?"

And so it went on every single minute for that whole hour until Bianca was finally able to eat again.


When it is September...

Today Bianca told me "when it is September, my hair will grow long and I can get earrings" and her whole face lit up at the thought.

Yesterday's hospital visit was incredibly long. At 1pm we got there, did our blood test and then saw our doctor at around 2pm. As usual a pretty good visit and all Bianca's counts look good, except the Platelets. Neutrophils and Haemoglobin are down slightly but still good and platelets down to 87. Now normally 87 is low, but not low enough for a transfusion, and right now Bianca has quite a few bruises so we'll do another blood test in 2 weeks' time to see if they are busy coming up again or still down. So until then we'll be on bruise watch. And in the meantime Bianca is still on the full dose chemo she was last month.

And then we waited. And whilst we waited Bianca had the best fun ever playing with another little girl and she was giggling so much.

Finally at around 4:30pm or 5pm they gave Bianca's Vincristine and started her IVIG. We ran late in the morning and so I didn't have time to pack lots of things for Bianca to do and I wasn't too worried because I figured we would just watch some shows. Turned out that unfortunately the TV wasn't working and so we sat there with a few sheets of paper and a few crayons and some books that we borrowed from the play room. By the time it was 7pm and they finally removed the IV line, we were both so ready to go home.

Yesterday was our first day of steroids and so today she was mostly hungry, eating pretty much all the time and craving crackers and popcorn (far better than the wild boar she craved not too long ago). By tonight she started complaining of a sore tummy and she ended up being really sad and so it will be interesting to see what tomorrow brings. Lucky only until Saturday and then we'll get a break from the steroids again.


Quiet weekend together

And so we arrive at the end of the long weekend. It was a good break even though we stayed at home and didn't do anything in particular other than a trip to the beach, watching some DVDs, Bianca answered some of her emails (and yes, she replies to each email all by herself) (thank you so much to those of you who are emailing Bianca, and especially a big big thank you to my mom who writes every single week) and other than that it was just so great spending the time together as a family. Bianca has a lot of bruises right now (okay fair enough she does play rough sometimes) so we are not too sure if her counts might possibly be coming down at this point in time.

And for the first time since Bianca started school, the first day of her school holidays did not include a trip to the hospital for her monthly hospital visit, so that was a nice change.

Our hospital visit is tomorrow afternoon and then our week of steroids. I'm hopeful that we'll rather have cravings this week and not the tummy aches she had last month, but as always just one day at a time.


Easter Bunnies and Rock Pools

We had a lovely day!

The Easter Bunny decided to arrive today (Friday) instead of Sunday. I guess he knew that the kids would likely end up high on sugar and so it would be best to have most of the weekend to recover before next week. The kids were so excited and surprised to find all the Easter eggs hidden in various spots inside our house.

"Look Mommy, chocolate bunny"

"Hey look over here!"

"Hmmm, chocolate""Yes, hmmm chocolate"As it was a beautiful sunny day we decided to take the kids to ride their bikes at the school. Both kids are actually too big for their bikes, so we'll have to make a plan at some point to try and get bigger bikes. But either way, they had lots of fun.

I attempted throwing the ball through the netball hoop which brought back some memories from when I used to play netball at school. I wasn't particularly good at the time, but I enjoyed it.
Afterwards we went to Rothesay Bay Beach.

Bianca took her fishing net along, but she didn't spot any fish in any of the rock pools.

Caitlyn didn't quite understand the concept of looking into the pools, and instead splashed right through them (thank goodness she was wearing her swimming costume).

In one of the pools we noticed some shrimps and that was so cool!

We don't really have any plans for the rest of the weekend, so we'll just see how it goes. If today was an indication of what the rest of the weekend will be like, then I'm sure it will be very relaxing which will be perfect before Tuesday when we start steroids again.

Happy Easter everyone! I hope that you will have a nice, relaxing weekend!


Playing Fairies

Today when I collected Bianca from school I asked her what games she played with her friends.

Bianca: "We played fairies"

Me: "How do you play fairies?"

Bianca: "Well, you're not allowed to touch any boys because then they will get some of the special fairy dust"

Tomorrow is the last day of the school term. We don't have too much planned for the holidays. On the 14th we have our monthly hospital visit and then the week after Bianca will have tennis lessons every day as part of the school holiday programme they offer. She is so excited. Bianca wanted to know what happens after the school holidays and I said that it would be Term 2 and she asked "which class will I be in?" and I told her that she would be in the same class and that you only go to a new class at the beginning of every year.


Trying to keep up with others

Today was Bianca's last tennis lesson of the term. I am quite shocked to realise that within 2 days the first term of school will be done. It almost feels as if it went too fast.

Choosing tennis for Bianca was a great choice, she had so much fun and I learned today that starting kids between the ages of4 and 7 is the best time to start if they ever decide to take their tennis to a more professional level. I don't yet know if Bianca will end up having the talent or desire to take it to a more professional level (and certainly it sounds so expensive), but for us it is more important that she has fun and do the best she can and so far so good.

As I was sitting there watching today, there were moments that I felt a little sad. Bianca tries so hard, but she just cannot run as fast or as well as the other kids. At times the kids all had to run after some of the balls. I noticed that Bianca would run as fast as she could when she spotted a ball and another child would beat her to it, and I could just see the disappointment in her face when the other child picked it up before Bianca could (and I found myself wishing they would just give her a chance), but despite her disappointment, she didn't cry, she didn't argue, she just left it and for that I'm thankful. But I couldn't help feeling a little sad for Bianca. I know that it is likely only until September when she will have the last of her Vincristine doses, and I'm hopeful that soon after that her running ability will improve, not because we want her to become an athlete or something like this, but so that just for once she is able to run at least as well as some of the other children in her class or at tennis or wherever.

Today I also met with some of the mums at the monthly CCF coffee morning. It is always good to catch up and meet some of the other families walking this journey. The one mum is at the stage where she is starting to think when the best time would be for her little girl to start school, and it really brought back memories of when we were thinking about starting school with Bianca and how very daunting it felt. Suddenly we realised that starting school wasn't just a simple process ,it was actually quite complicated because there were so many things to take into consideration.

I also discussed with them why we decided to start blogging. For one it is a great way to stay in touch with people, it is different to an email and so you don't end up forcing people to read your updates or look at your photos when they might not actually be interested. It ends up being their choice. For us it also helped to create awareness. But most of all, this forms part of Bianca's memories. I don't know how much she will remember one day, but I'm fairly certain she might very well have questions about the time she had cancer. So I want her to be able to come here and read all about it. I want her to know that whilst we had some challenging days, we also had many many happy, smiley and more normal days. I want to share with Caitlyn one day that we didn't forget about her, but we made a point to remember her own little achievements. And whilst it would be so easy to just try and completely forget about this time, I don't think it will work this way. I think it will always be a part of our lives. Certainly we will never know life again as we knew it before cancer, it changed us and shaped us and pushed us on a different path than we ever thought we would go. It might seem like a very bad thing, but there are positive aspects too, like the strength you gain, you change your priorities, you do tend to focus more on the little things and appreciate that so much more.

I will never deny or dismiss this journey, I don't think it will be possible to try and forget because it is part of us whether we like it or not, and the only thing we can do is to learn from the lessons it offers and to take the positives with us on our future journey!


I couldn't believe it!

"She died Dec 8, 2008" was the comment some insensitive idiot left on Bianca's YouTube video. Not once, but twice. Thankfully we get notifications when people leave comments and so I was able to go in and delete it, block the user from ever leaving comments again and leave my own message. I felt so upset that somebody could actually leave such a horrible comment that isn't even remotely true.

So for everybody out there know this: Bianca is doing very well at the moment. She is still tolerating her treatments very well and yes, steroids are often driving us crazy and affecting Bianca's eating habits, her moods and does sometimes disrupt her routines. It is disappointing that she continues to lose hair just when they start growing nicely, but that's just part of the treatment and we accept it and cope well with it. But she's going to school, she's thinking of her 6th birthday, she loves playing tennis and for most of it is doing typical 5 year old things.

So if you can't say something positive, please don't leave any comments!


Anybody seen our time-machine?

So recently we noticed our insurance company deducted too much money from our bank account and certainly we've received no communication at all from them.

So I emailed them demanding to know what was going on. And so then I received some feedback from them this morning. They investigated our situation and found that since the last renewal, they changed underwriters and so she explained why the amount was then different. And just to prove that they sent out communication to us, she attached a scanned copy of the letter and schedule sent to us.

First of all the address was our old address just when we came to Auckland (the house that was leaking and filthy where we didn't stay very long). Just after we moved we phoned them to update our new address.

This letter was dated 1 April 2009 (that's right folks, that was 2 days ago) to inform us that they have decided to change underwriters. The letter then went on to say "You do not need to contact us to activate the change. This will occur automatically on 26 February 2009 at 12:00 a.m. At this time we do reserve the right to change the terms of your policy, upon adequate notification to you... If you decide this cover isn't right for you, you have 30 days from the date the cover changes, 26 March 2009 at 12:00 a.m. to advise us. Please fill out and sign the attached direct debit authority"

Anybody seen where we parked our time-machine?

Special prayers for a special someone

I need to ask you for prayers for a very special girl I met when Bianca was first diagnosed.

Ailsa was 15 at the time and at the time spent 3 solid months in hospital, 3 months in a shared hospital room with the only privacy a curtain that she could pull closed around her bed. Prior to that she went into a coma, lost her hair and developed severe pain in her leg. All for no good reason and the doctors have been unable to figure out why these things happened. Now in the week I heard from Ailsa again and right now her sight has deteriorated to the point where it is hard for her to continue going to school and at times she struggles to breath, her hair is starting to fall out again and her foot is still very sore.

Ailsa is such a special girl. Whenever I saw her she was always smiling. She often came to check in on Bianca when we were in hospital and even once brought Bianca a really cool book and a puzzle. During that time Ailsa became my inspiration and I found her so amazing with such a big heart.

Please will you keep Ailsa in your prayers and thoughts.


Well done CCDHB, you have succeeded yet again!

The one date every year that I dread and hate the most must be the 1st of April - April Fool's Day. On that day I am always on the edge as I try and avoid situations where I could be humiliated and fall victim to some stupid pranks. And this year was no different. So when I heard from a friend who text me with some pretty disappointing, shocking news at first I was like "oh no! That's terrible" and then "oh wait is this just an April Fool's Joke?" to which she replied she most definitely was not joking. But here we are once again in utter disbelieve and shock.

I have to hand it to the CCDHB. They have yet again succeeded in "not retaining" the paediatric oncologists at Wellington Hospital. They have yet again let so many existing and future families down and placed tremendous pressure on the other two specialised units in New Zealand (Starship and Christchurch). Once again patients are faced with the reality that if they are newly diagnosed or if they have a more challenging situation, they will probably end up being sent away again. Once again.

For those of you who don't know:

When Bianca was diagnosed there was Doctor Liz and Doctor Anne. Not too long after, Doctor Liz left (and much later admitted that the reason she left was that inadequate resources were putting patients at risk) and then Doctor Anne was left with an increased work load, increased work hours and when she finally left, none of us were surprised, but certainly we were shocked and heartbroken as she was so brilliant at what she did, and although she never discussed reasons as far as I know, I don't think it would have been possible to work the way she was left to work for an extended period of time. And the brilliant CCDHB never bothered to start the recruitment process while Doctor Anne was still there and instead just left her to work on her own.

When Doctor Liz left a number of newly diagnosed patients and the more challenging cases were sent to Starship and Christchurch as the Wellington unit simply could not manage the way it was. We were fortunate that we did not have to travel a lot for treatment, but some families were given as little as 24 hour notice to start treatment somewhere else, so not only were they dealing with the devastating diagnosis, but they were suddenly sent away to a place that they did not know, possibly without the family- and friend-support structure they had at home. There was one of Bianca's treatments though that we were sent to Christchurch for. We were sent to Christchurch for one of Bianca's treatments that normally would have been an outpatient situation and instead turned into a 3 day trip. Neither of us liked it. We were stuck for a whole day in this incredibly full and busy dayroom listening to doctors discuss other patients' situations with them, listening to kids figh over the playstation and the noise just continued and continued until probably around 4pm. Bianca found accessing her port traumatic because their style were so business-like and (what I thought) not handled age-appropriately and on top of that she desperately missed her dad and baby sister and kept asking when we would see them. Not fun at all!

It was quite a while after Doctor Liz left that the CCDHB decided instead of starting a lengthy recruitment process that they would far rather compile a report to decide whether they would be keeping the unit or not and finally decided that they could probably keep the unit providing that Christchurch would be able to share the care. This was okay for a bit, but certainly I didn't always have faith in the whole Christchurch deal as they were often rushed on the one day a week that they visited Wellington hospital and I sometimes felt as if they weren't really able to establish a relationship with the Wellington patients as they didn't really see them very often, and instead relied on a normal paediatrician and a locum to do an assessment and then to contact the Christchurch doctors via teleconference for decisions to be made. I'm not saying it didn't work, but I certainly didn't always feel that it was effective at all.

And then we were all elated when we were told in a meeting by the one representative that they planned to move the Children's Ward and the Oncology Ward into one of the old buildings that would become available when the departments in the Grace Neal block would move to the new buildings. Finally, we thought, they would be able to design a dedicated unit that would be safe for the oncology kids, with more space which would be great when finally the other patients who were sent away, would return. And on top of that they finally recruited two new specialists who would be able to start a number of months later. I remember that time as if it was just yesterday. (Read here) and (here).

There were a number of factors that finally made us feel it was time to move. We just got used to the new locum when he also left, and it was around this time that we were informed that because Bianca was on her maintenance part of her treatment she did not need to be in the care of the specialists from Christchurch anymore, but would instead be in the primary care of a paediatrician. Suddenly it just felt that October would be too far and it would be too long to wait for the new specialists to arrive. We didn't feel things were that safe anymore and certainly up to that point Bianca has had a number of complications, spent lots of time in hospital with various infections, developed shingles and even had a fairly severe allergic reaction to one of her chemo drugs - we really felt that it would be less risky to be closer to a unit that is well established with sufficient specialist care. And so when Terence got the opportunity to come and work in Auckland we took it.

Moving to Auckland was incredibly hard. For 3 years Wellington became our home, we were happy there, settled, used to the nursing staff at Wellington Hospital, Bianca had friends there, we started thinking about schools, but when it comes to your child's health, you do what is best for her. It was very expensive having to move from one city to another, the move itself cost us more than $3,000, we had to pay for a bond / deposit on our new rental home (which was more expensive than before), and other bits and pieces that we would not have had to pay for if we were able to stay in Wellington. Rental homes in Auckland are much more expensive, it takes us much longer to get to Starship and it is more expensive to park at this hospital than Wellington hospital. And for months after, Bianca was desperate to play with her friends Amy, Edie, Risha, Georgia and Elijah and many of the other friends she made at the time again. We always thought we would stay in Auckland as long as we needed to and that at some point it would be nice to move back to Wellington again. We certainly did not want to move back to Wellington unless we were sure that the new oncologists would stay, were well settled in a well-run unit.

And then "surprise, surprise" the CCDHB went against their promises when they decided that they didn't think they wanted to move the oncology ward into the Grace Neil Block anymore. Their reason was that the space would not be sufficient (but hey, this building has something like 5 levels and I was there when Caitlyn was born - the one room was huge, and the other one I was moved into and stayed the night was no smaller than the isolation units they have in their current location, and let's face it the current space does not allow for much room for oncology patients anyway - they have something like 4 or 6 rooms dedicated to oncology patients and with those rooms you have normal sick people walking right past, so not really that ideal for patients with no immunity). And all I could think about when I read the article was that I was shocked, but certainly not surprised. At times I felt that the CCDHB would say things just to get the media and other people off their backs and then when things quieten down, then they break their promises again. Maybe it isn't like that, but it certainly felt like that.

But at least Wellington Hospital has their new specialists so that is something positive, right? Right! Now there is an article saying that these new oncologists have decided to resign. So here we go again. I cannot believe that the CCDHB and the management seem unable to retain top notch staff. I don't understand why they ended up spending hundreds and thousands of dollars on beautiful landscaping for their new buildings (let's face it when you are sick, you don't particularly care what the outside looks like), but they never bothered coming up with a plan for the Children's- and the Oncology wards. That was never included in their plan. That makes me wonder how dedicated they really were about retaining the unit.

I don't know what plans they have made since they announced the unit will stay where it is, I haven't been to any of their meetings, but I just feel so upset, heartbroken, sad for all these families in Wellington who are now once again placed in a very difficult situation. And the funny thing is that CCDHB knows that as hard as parents try, they will end up taking whatever the CCDHB throws at them, because it is not exactly as if you can say "well you sort out your rubbish and when it is all sorted out then call me and I will bring my child back for treatment". And I wonder if any of these CCDHB members and management were placed in our situation where they suddenly had a child with cancer (and I'm most definitely not wishing it on anybody) would they have been happy with the situation at Wellington hospital? Probably not. But hey, they are not in our situation so why would they care?