2008-12-31

Goodbye 2008, hello 2009

And so we reach the last day of 2008 and as Bianca and I will wait for 2009 to start from our isolation room 7, Ward 24 B, Starship Hospital and Terence and Caitlyn will start their new year at home, we reflect on the year that was and the year that will be.

We have a really nice view of the Sky Tower from our room and the one Play Specialist indicated that they often have fire works from the Sky Tower on New Year's Eve and so we'll wait up for that and see if we can see anything.

This year certainly had an interesting start when Bianca got shingles, but in the end it turned out good, it is because of the shingles that Bianca started getting monthly IVIG transfusions and daily Acyclovir as it did make going to school less risky. It will always be risky as long as Bianca is sick, but she is a bit better protected against some things.

Speaking of school, it is just such a blessing that she was able to start school in July. At one point we were told by the Christchurch doctor that we had to wait before starting school. And then we came to Auckland and it's funny how things work out because when we looked for our rental home it was with the idea that school wasn't a possiblity at that point in time and we didn't look at school zones. And so it was a blessing because when we were given permission by the Auckland doctor that Bianca could start school we found that the one school in our zone was a really good school, small and very understanding. Bianca loves it there, the education is good and we'll never ever take going to school for granted.

Caitlyn going to daycare is another true blessing. For so long we had to keep her away from other kids to prevent her picking up things like chickenpox and measles and things like that. We still have to be careful, there still is a risk, but certainly now that Bianca is going to school and her counts have been fairly stable, we feel more confident about managing the risks. And once again we were blessed to find a centre really close to home, with good hours where Caitlyn is really happy.

For most of this year it's been fairly settled. Yes, the dreaded steroids are always a challenging time for us, but for most of it Bianca's counts have been stable and whilst it is a bit of a shock that Bianca's counts suddenly dropped, it is really just a reminder that we should never get too comfortable and always expect that things can change.

I have to say that there are so many people that we need to say thank you to.

My mom. She has been writing so many emails to us, often more than one a week and always sharing her news, commenting and responding to what's been happening in our lives and of course my good friend Riki with her news. These people as well as a number of others have always been so actively supportive and it really feels that they are part of our story.

A sad part of our journey is that there are some people who used to be in regular email contact but who stopped writing to us completely, one mentioned to us that he doesn't read our blog at all (which really is fine), another assured us that they saw themselves as completely supportive even though they don't ever write to us (except when they are looking for something from us) - not with their news, not in response to what happens in our journey. But that's life and we've come to accept that this is how it must be.

So thank you to those people who remained in contact and those who send messages through my mom (she often writes to me about all of you), thank you so much for your active and sincere interest. It means the world to us to have you part of our journey.

The internet certainly has become a huge factor in our journey - our blog, other blogs and journals and Facebook (and certainly Facebook has enabled Terence and me to stay in touch now during our hospital stay) - all these have enabled us to meet some wonderful people from around the world. Some with similar challenges to us, others with their own challenges, but ultimitely a whole new support structure that we didn't know existed until we started our journey. There are too many to mention and I don't want to leave anybody out. You all know who you are. Thank you so much for being there for us.

And if it wasn't for our journey we wouldn't have met people like the staff at Wellington hospital and Starship and the wonderful people at CCF and of course all these other parents that you meet along the way who have now become life-long friends. Friends like Olivia, Catherine, Rebecca, Shanell, Hannah and Bridgit.

And so I would like to wish you all the very best start to what I hope will be a wonderful, successful year where your dreams will come true. We feel confident that 2009 will be a great year and for us, the end of treatment is only another 8 months away, we are so very excited about that!

And now I say goodbye and farewell 2008 and hello 2009!

Hospital update

We are still in hospital. No idea as yet when we will be discharged. Today Bianca's neutrophils are up from 0.00 to 0.02. Still very very neutropenic, but coming up which is really good and she's still getting temperatures ranging from the low 37s to the mid 38s. But overall Bianca is in good spirits. We had to tell her that she will not go to camp this coming Sunday and as expected she's a bit disappointed, but Bianca usually just accepts these kind of things. We'll just have to do something fun when she's discharged from hospital. I'm staying with her again tonight and it sounds as if she wants me to stay again tomorrow night but I'll check again in the morning.

Today we had a discussion about poo. Not Winnie-the-Pooh kind of discussion, but all the tummy issues Bianca's been having. We saw a registrar as well as a specialist from the gastro team and they don't seem overly concerned. It doesn't seem to be related to her diet, they've tested for any of the usual bugs and things and so it is probably just her body's way of dealing with whatever virus might be looming somewhere in her body. They do suspect she has some kind of virus which is why she keeps getting these fevers. They also suspect that this is also just as a result of chemo and it does sometimes happen so for now we'll just sit it out and wait and see if it starts getting better. And touch wood, so far today has been better. Of course Bianca did think it was awfully funny that there could be a Poo Doctor and somehow I don't think this will be a profession she will end up choosing.

2008-12-30

Girls' night in isolation

Temp is up again to above 38. White cell count is up slightly, but still no idea what neutrophils are as they are not yet able to measure it. So from a doctor's perspective she is what they call Febrile Neutropenic. And in the meantime we'll have a girls' night here in Bianca's isolation room in Ward 24 at Starship. Tonight is my turn to stay with Bianca and Terence has gone home to spend the afternoon / evening with Caitlyn.

From what I understand Bianca will stay in hospital until her neutrophils are high enough and the temperature is back to normal and even though they haven't ruled out Camp Quality this coming weekend it is starting to look unlikely that she will be well enough to attend camp on Sunday for the next 5 days.

They still have no idea what is causing her runny tummy and every single test has come back clear, so as far as we can see, no bugs! Tomorrow a doctor from the gastro unit will come and have a look and try help us figure out what is causing it and how we can fix it. So in the meantime I am writing down what she eats / drinks and when she needs to go to the toilet and then maybe we can find some kind of pattern in that.

For most of it Bianca is in good spirits. She had great fun drawing some pictures earlier and I even managed to convince her to eat and drink a little bit. Despite the fact that she cannot leave the room at all, she is still smiling and not even complaining one bit. Instead I think she is loving the chance to watch the Disney channel on tv (which we don't have at home) and she's now decided the PowerPuff Girls are definitely her favourite.

And then Shanell (Kyah's mum) has decided to team up with 3 other ladies and they will be shaving their hair for the 2009 Funrazor event. They hope to raise around $50,000 between the 4 of them with every single cent going to CCF. They will be setting up their fundraising site soon as they've had so many requests of people who are keen to start contributing and they have also created a journal where they will update us all on their stories, their progress, photos and so on. Please visit the site and add it to your favourites. Shanell is one of the strongest, most amazing and inspirational people I have ever met.

Click here to visit Shanell's original journal (Kyah's Journey).
Click here to visit the new Funrazor 09 journal.

A quick visit yesterday

Yesterday I managed to visit Bianca in hospital. I didn't take Caitlyn up to the ward with me for a number of reasons - 1) we have to pay for parking at Starship Hospital, 2) the room is really small and having a busy 22 month old running around trying to pull at all the wires - probably not a good idea, 3) she's had a runny nose which seems to be gone, but with Bianca not having neutrophils it's better not to take the risk. The idea was that I would visit and Terence would look after Caitlyn. It was a rainy day which meant outside activities were out and so Terence and Caitlyn went to the shopping centre in Newmarket (not too far from hospital) for a walk-around and for lunch.

Bianca certainly seemed happier and asked to draw some pictures and I even convinced her to eat a slice of bread, some rice crackers and to drink some water and chocolate milk. She's given me a list of some things to bring for her and so this morning I'll sort it out before I leave for the hospital. She wants me to sleep there tonight and so Terence will come home with Caitlyn and spend the night at home.

I think Bianca may have stumped them a little bit. She still has the regular runny tummy but so far every single test has come back negative for bugs. In the meantime she is getting IV antibiotics just in case, more as a preventative rather than to treat something specific (because quite frankly they haven't figured out what exactly is causing the runny tummy). I noticed on the blood tests yesterday that her haemoglobin was up a bit, but platelets down a bit and her white cell count came up a little bit. Still too low to get a neutrophil count, so she is very much still neutropenic. And her temperature is also busy coming down a bit, sitting in the mid 37's rather than above 38 and 39 - so that is a good thing.

Terence indicated that last night Bianca had about an hour where her tummy was very sore. They had a doctor in who said it is probably the effects of her runny tummy and so they gave her some Ibuprofen for it.

The registrar yesterday said that as long as Bianca's counts continue to climb she might very well still be able to attend camp this coming Sunday. Of course part of me is thinking that her neutrophils are so very low at the moment and not really rising very quickly and we are now at Tuesday so only a few days left for those counts to recover sufficiently. And of course I just really want them to sort out whatever it is that is causing her to have this runny tummy all the time. It would be great if we could just get back to normal again.

And now I have to go and get ready so I can go and take over from Terence.

2008-12-28

Still in hospital, but update on blood results

Thank you so very much for all the supportive comments and emails and messages through Facebook.

Earlier I spoke to Bianca on the phone. I haven't yet gone to see her, Caitlyn has a runny nose and right now is probably not the best time to go with Caitlyn to visit Bianca as it would probably defeat the purpose of having her in an isolation unit. She certainly sounded a bit happier and was even eating Milo Cereal (which is better than yesterday's no appetite). At the time she was negotiating with her dad to watch High School Musical and he wasn't keen (see he really doesn't like High School Musical and would give anything not to have to watch it), but of course I kindly reminded him who it was that was stuck in hospital and so he finally gave in with a "Bianca if you eat all your Milo Cereal we can watch High School Musical". So I think Bianca will be pretty happy tonight :-).

I managed to get some blood test results back (funny in our pre-cancer lifetime blood tests meant nothing, a big fat zero, but nowadays it is the main focus point in our lives).

  • Haemoglobin: On Monday - 78, Yesterday - 59, Today after two units of blood - 73 (normal range is 109 - 144)
  • Red Cell Count: On Monday - 2.34, Yesterday - 179, Today 2.31 (normal range 3.70 - 4.90)
  • Platelet Count: On Monday - 38, Yesterday - 20, Today after transfusion 77 (normal range 150 - 400)
  • White Cell Count: On Monday - 2.62, Yesterday - not sure, Today - 0.35 (normal range 4.60 - 13.40)
  • Neutrophils: On Monday - 2.32 (down from 3.81 in November), Yesterday and Today - they are not able to calculate it due to very low White Cell Count, so probably no neutrophils. (Normal range is to try and have them between 1.00 and 2.00 which is why they adjust our chemo dosages), Neutrophils are what you need to fight infections.

At this point I'm not sure how long Bianca will stay. I'm hoping that by tomorrow we will have some results back on whether there is an infection brewing or not.

Bianca is looking forward to Camp Quality on the 4th of January and I really really hope that she will still be able to go. She will be so disappointed if she has to miss out.

And now I'm going to attempt some housecleaning. With Caitlyn in bed and asleep it certainly will be more efficient than with her "helping".

Feedback from the hospital

Terence called from the hospital.

Bianca's temperature went to 40 overnight and is currently down to around 39.4 (so she still has a fever). Last night she got a unit of blood and another unit of blood as well as platelets this morning and to top it all, she is now neutropenic which basically means she has no ability to fight infections and so this morning they will move to an isolation unit. And just as I told somebody earlier this year when they claimed that this week would be a "safe" period for Bianca, we can never assume that any period is a safe period for us. There are times when the risk is lower and other times when the risk is higher, but there are always risks involved.

I believe Bianca will be getting an X-Ray sometime this morning and they also want to test another sample to re-check for any bugs and if there is indeed an infection then they will start antibiotics.

I'm not quite sure where her actual levels are sitting at, Terence will be getting me copies of her blood test results.

2008-12-27

Admitted to hospital

So they decided that Bianca will need to stay the night. Her temperature was sitting at 38.6 when they got there. Terence is hoping for a single room based on the fact that she's been having those runny tummies.

I'm hoping for a short stay and that by tomorrow Bianca will be much much better.

High temperature

Terence and Bianca are on their way to the hospital. Bianca's temperature is sitting at around 38.5 and so they need to see her to decide if she needs to be admitted or not.

The whole day she's been pretty down-in-the dumps and just looking pretty unhappy. She didn't show much interest in anything, although they did manage an outing to Motat today. Other than that, Bianca pretty much just stayed on the couch. She didn't have much of an appetite either. I sort of remember a time when we were looking forward to the steroids because it made her have an appetite and nowadays, she doesn't get an appetite with steroids anymore, it just makes her miserable.

We hate, hate, hate seeing her like this. This is just so not like Bianca and we can't wait for the steroids to get out of her system. Tonight was the final dose and it couldn't come soon enough.

So now I sit and wait until Terence phones to let me know whether they will be admitted or whether they will be coming home tonight. I'm hoping for coming home, although it will be so late by the time they get there, they may as well stay the night, but I certainly am hoping they will be home by tomorrow morning.

2008-12-26

I don't really like being on maintenance.

Don't get me wrong, maintenance is certainly more settled than the intensive part of our treatment. Certainly we've had more opportunity to do things that are more normal, certainly it is a nice change to go from weekly hospital visits to monthly hospital visits. Certainly it is just so great that Bianca can go to school and things like this.

But...

I remember when we reached maintenance I had a meeting with one of the Christchurch doctors when we were still in Wellington and we had this very rushed meeting and he ended with "see you in a month". He left the room and I remember asking the day stay nurse who was at the meeting too if I understood correctly that we were only due back at the hospital in a month. I remember at first feeling excited that we had monthly visits instead of weekly or fortnightly, but I also remember suddenly feeling as if they removed our safety net. To suddenly go from those weekly visits where you do weekly blood tests to monthly visits and for a whole month you won't know whether your child is supposed to be treated as neutropenic or not, would it be safe to go out to public places or not? That felt a bit like unfamiliar territory all over again.

So now on maintenance we have to rely so much more on our instincts and I guess to some extent make decisions and assessments about things that we were never trained for, it's not like we ever studied paediatric oncology or even nursing.

Take for example, the past 2 weeks or so Bianca has had a runny tummy. She goes more often than she used to, she goes several times a day, it is different to how it was before, just last night she was up 3 times to go to the toilet (which is most definitely not like her), recently we got the test results from the sample we had to get through our GP and the results came back... clear. There you go - no bugs. So then why is it still this way?

She also regularly complains of a sore tummy. Not "bend-over-double" kind of sore tummy, but definitely to the extent where she is aware of it. And yesterday she vomited a mere 20 minutes after getting her steroids. Just once though, but we were not sure whether we needed to repeat the steroid dose or not. And again, not like her. So we called the hospital and they asked the usual questions to which Terence responded "no she doesn't have a high temperature", "yes, she is still eating and drinking, less than usual, but she is on steroids and that sometimes does happen", "yes, she is a little bit lethargic, lying on the couch, but she is on steroids and it does often happen like this on steroids, so not sure if this is normal behaviour or not". Their answer, "no don't repeat the steroid dose", "if she is still eating and drinking and has no temperature then they don't need to see her". So despite the fact that she goes to the toilet more often than usual, that things seem different to normal, that she often complains of a sore tummy, unless she stops eating and drinking or develops a high temperature and since her sample came back clear, there is not much more they can do. So it feels a bit frustrating. It feels that there is definitely something wrong, but if the sample came back clear, then what could it mean? So I guess on Monday at our next appointment I will be asking her oncologist about this and see what ideas he may have.

When we were still on the intensive part of our treatment every phase had a beginning and end. Each phase was pretty much 56 days and it really felt like we were making progress, moving towards our end of treatment date. Now on maintenance each phase is 84 days long. We still talk of day 1, 29, 57, 84 and so on. And of course as soon as you reach day 84, then the very next day it is day 1, no change, always the same. And in some respects it doesn't feel as if we are getting any closer to that last day of treatment. But don't get me wrong, we now have a break of at least a week as we wait for Bianca's counts to recover, it does feel nice to have a bit of a break from the same routines, but we also don't really like being off chemo at all, because that feels risky, being on treatment feels safe.

The other thing is of course Bianca's low platelet level. Here we are on bruise watch. Earlier this week, Bianca bumped her head. We were dropping Caitlyn off at daycare and there was this pillar outside the daycare centre and Bianca stepped forward and must have slipped a bit and then bumped her head. So whilst not a big black bruise, it suddenly had these little red pin-point spots where she bumped her head. I was told that if we notice these red pin-point spots we should call the hospital and bring her in because she may need a platelet transfusion then. So when I phoned them, they told me that they didn't need to see her because platelets at 38 is not low enough to transfuse and unless she starts getting more bruises all over her body then we don't have to worry about it. Of course I can't help wondering whether her levels are busy dropping some more or busy going up.

Times like these it would have been so much nicer being on weekly visits instead of these monthly visits. And fair enough Monday is a week from our last appointment (but only because of the low levels) and once she is back to where she needs to be then we'll go back to monthly appointments and back to having to make all the assessments and decisions ourselves and "is this something to worry about or not?"

I am anxiously waiting for Monday's appointment because I really want to see what her levels are then. I can't help wondering why her platelet- and haemoglobin levels suddenly dropped after she's been on pretty much the same dose of chemo for the past few months pretty much, I mean I know it is supposed to affect the neutrophils, but why suddenly her platelets and haemoglobin. Of course it is probably a perfectly normal situation and it is probably just freaking me out a bit because her counts have been so good for so long and the sudden change caught me by surprise, so Monday's meeting would be good. But of course now it feels as if the time is dragging, as it often happens when you just want to get the results.

Sorry for rambling - I can't wait for things to return to boring and normal!

Those mad crowds looking for Boxing Day sales

For most of it Bianca has been doing fine. With "fine" I mean mostly lying on the couch watching TV or sleeping or just lying there not wanting to do a whole lot. Certainly not showing much interest in any of the toys and things around the house, even when we put up Caitlyn's little splash pool she got from Santa, Bianca didn't really show any interest that she wanted to play as well and instead chose to lie on the couch. Oh well, we expected this and so we feel really good about our decision to have Christmas early. It has helped though that she has had some longer afternoon naps which helped so that she isn't as sad and emotional come night time. It definitely confirms that next year she will at the very most go to school only half day each day when she's on steroids and then coming home and have a long nap. I just don't think she will cope with full days when she is on steroids.

So this morning we decided that we would go to the shopping centre to get out of the house a bit, have lunch at the food court and also get a few grocery items. We sort of expected crowds - after all just about every single shop offered these Boxing Day sales and so the masses were out again. People really go crazy during this time and just on the 24th alone they recorded a total sales NZ$216 million (throughout New Zealand) for this one day alone!

You would have easily recognised us because Bianca chose to wear this bright pink winter jacket. Now to all of you living in the US and in Canada and everywhere else where you have winter right now, this might sound like a perfectly normal thing to do, but when you are in the middle of summer and everybody is out with their jandels / sandles / flip-flops and their shorts and t-shirts, we stood out pretty clearly. But Bianca insisted she felt cold. At first I stood there mocking all those who were queuing up to buy loads of things they simply didn't need simply because it said "Boxing Day sale" and we went and had our lunch, we bought the girls an ice cream each and then we made our way to the grocery store for the few things we needed.

So there I was on my way to get nappies for Caitlyn, on my way to get milk and tea bags and I walked right past this display saying "all large toys $19.99" and so I saw 4 really cool things that I thought the girls would really really like and I loaded it into the trolley thinking I'll go and ask Terence's opinion. He was waiting just outside and so I asked him to meet me inside. He looked at it, and said that he thought it might be cool for their birthdays. So we got 2 things for each of the girls - before the sale, the total of these 4 things would have probably been NZ$205 and so we thought this was an excellent deal for their birthdays next year. Of course Terence did mock me terribly and said "all those mad people buying things they don't need because it's on sale?", I still maintain this is different and we know their birthdays will be coming up, so if it is much cheaper now then we may as well get it and put it away. Perhaps next year we should do our Christmas after Boxing Day and do our Christmas shopping when they have Boxing day sales on :-).

And even though we had the girls with us, Bianca didn't show any interest in our purchases, she didn't ask to see the boxes, she didn't ask about it, she didn't ask to hold it or anything which really just confirms that she is not 100% herself. Lucky tomorrow is the last day of steroids for this month and we can hardly wait.

2008-12-23

And so it begins...

It's only been the first day of steroids and the tears (or rather sobbing) have started, all because Terence took just a little too long with reading stories. That's steroids for you... Sigh!!!

Unexpected blood results

Yesterday was a long, long day for us as it was Bianca's theatre day. We were on the 1pm theatre list and eventually they called us at around 2:15pm (so at least not too late).

I was quite shocked to find out her haemoglobin- and platelet levels have dropped quite a bit and I didn't really expect that. For the past (I don't know), 2 or 3 months Bianca's levels have remained stable on the full dose of chemo. Her levels were not low enough for a transfusion (current platelet level sitting at 38 and they transfuse below 30), and it didn't affect the hospital treatments, but it does mean that oral chemo have now been put on hold and we are on "bruise-watch" to be aware if Bianca suddenly starts getting funny bruises and so on.

So in one week we have to be back at the hospital for another blood test to see if her counts have recovered enough to start oral chemo again and then she'll probably be on a lower dose to start off with.

In one way it is a nice change not to have to do chemo at night and timing Bianca 2 hours after supper each evening and so on, but in another way it is a worry when chemo has to be put on hold.

I guess it is just another reminder that things can change quickly and unexpectedly and that we should never get too comfortable.

Today was Day 1 of our steroids, so we'll see what this week holds.

And just as the last school holidays we spent the very first day of the holidays at the hospital and today (the second day of the holidays) Bianca and I went to the movies and watched Madagascar 2 which we throughly enjoyed.

Early Christmas

Our early Christmas celebration made the news! (Click here for the news article).

I've never seen anybody move so fast from being completely asleep to up and opening the presents Santa left, as Bianca did on Sunday morning.

The kids absolutely loved their presents and went completely crazy. I think Caitlyn is going to be a bookworm one day because the books she got was a definite hit and Bianca loved, loved, loved the knittng set my mother sent her. She couldn't wait to get started and asked "can I knit myself a coat?" They got loads of other presents too and I have to say they have been thoroughly spoilt. But it's just once a year, so it doesn't really matter.

Other than that, we had a quiet, relaxing day.

In some respects it was so cool to have our celebration early. There were no horrible steroid side-effects and Bianca also had the best time ever. Of course it would have been nice if we didn't have to deal with medicines with horrible side effects and as a result shift important celebrations.

I keep feeling as if Christmas is over and done with and then at the shops you see the mad crowds rushing around getting last minute shopping done, loading their trolleys with food and stuff and you hear the Christmas carols, then of course Christmas is very much still happening. But when I see all those people rushing around like mad things, I have to say in that respect I'm pleased we don't have to be running around doing last minute shopping anymore. But next year this time if all goes well, we will be celebrating Christmas on the 25th just like everybody else...

2008-12-20

Mixed emotions

And so the very last day of school sneaked up on us yesterday. In a way it was a happy and a little sad for me.

Caitlyn and I got there a little bit before the end of the school day and as I stood there while Caitlyn played in the sand pit all the kids came out of the hall and gathered outside. It was the very last day at this school for all the kids in year 6 before they start Intermediate next year. And they all stood there releasing balloons. I couldn't help getting tears in my eyes as I watched the balloons float away looking smaller and smaller. Perhaps because it was so final. Perhaps a tear or two for many parents whose kids will never again be in primary school and are growing up so fast and this year releasing balloons also meant saying goodbye to incredibly brave kids like little Kyah, Matthew Litchfield, Liam Fisher, Cameron Brown, Sullivan Farrar, Dylan Mayo, Marissa Monroe, Tyler Stolp, Isaac Lieser, Bianca Bresadola, Chloe Anne Schmidt, Gabriella Rocco, Joel Wagner, Lillie Clark, and so many others, so watching these balloons just felt final. Of course I also realised that this was the very last day of Bianca's very first year of school. Never again will she be in Year 0, my little girl is growing up so fast.

Of course it is also so exciting that she did manage to attend school since July this year. That she managed to cope well and attened pretty much most of the days for the two terms that she was at school. It is so exciting that she is going to Year 1 next year. So in that respect I am so happy for her.

And of course getting Bianca's very first report card was just a "wow" feeling. It is so cool and she achieved pretty much what they wanted her to achieve. Just the physical education is not always as it is for other kids (but then I'm not surprised as the chemo does affect her abilities a little bit) and she doesn't yet have a perfect grasp on time management which I think might also be because she probably does get tired a little bit.

But either way, I'm really really proud of her.

2008-12-19

"Fly! Fly!"

It's official, my 21 month (well, almost 22 month) old is suffering from a phobia. Flies... which in the summer is practically impossible to avoid. She will completely freak out at the mere sight of one. In fact it happened this afternoon when Caitlyn had an afternoon nap. I pretty much just put her in bed and then heard this terrified scream, so I rushed upstairs.

Me: "what's the matter?"

Caitlyn: "Bee!", "Bee!"

Me: "There's no bee, look"

Caitlyn: "Bee!" (pointing)

Me: "no, that's a fly"

Caitlyn: Screaming, "Fly!', "Fly".

So I had to take her out of the room to calm down and then she decided she would go and sleep in Bianca's bed. Well, she had a great sleep and didn't even fall out of bed. So tonight is the big night where we will try and let her sleep in a big bed. Here's hoping it all goes well. Right now she thinks it is pretty funny to keep jumping out of bed and knocking on her door.

But since the nap, Caitlyn is absolutely terrified of flies. Maybe she was slightly asleep and then a fly landed on her hair or her face or something. But this fear will be slightly hard to get over I guess, it's not exactly as if we can avoid flies now during summer.

This afternoon Bianca got pretty sick. She vomitted all her supper all over the bathroom floor. Lucky she was on a tiled surface and not on the carpet. So I really really hope it is not the start of a bug or something. At the moment she does feel better so I'm really hopeful.

This weekend we are celebrating Christmas so even though it is still early for the rest of you, we would like to wish you a very merry Christmas and a very successful 2009. We would like to take this opportunity to say thank you so very much for all the wonderful support we have received this past year. The emails, the comments, and so much more. Thank you so very much!

2008-12-18

Saying goodbye to Jody

Yesterday we had to say goodbye to our Au Pair, Jody. Jody arrived from Canada in May this year and for the past 7 months became one of our family. We've been so incredibly blessed to have such wonderful girls join our family such as Sanna and Sandrea and Jody. Saying goodbye is always so incredibly difficult and yesterday was no exception.

We put together a little video clip of Jody's time in New Zealand (click here to watch - you will need sound)

Jody, thank you so much for everything you have done for us, thank you for the laughs and the fun moments you shared with the kids. The house is much quieter without you here and we will miss you lots.

2008-12-17

Tears...

Today was Caitlyn's second full day at daycare and... tears. Not when we dropped her off. When we dropped her off she was all smiling and happy and excited and then this afternoon when we had to go and get her she was outside.

Me: "come Caitlyn, time to say goodbye"

Caitlyn: (heading towards the slide) "lide"

Me: "Caitlyn, say goodbye slide"

Caitlyn: "no! lide"

Me: "come-on, we have to got to the shops"

Caitlyn: "shops"

Me: "come, you can choose the trolley"

Caitlyn: "No! lide"

Me: "sigh", lifting Caitlyn up

Caitlyn: "No! Lide!" tears

Me: taking Caitlyn into the class.

Caitlyn: tears "no! play!"

Me: "look Caitlyn, look at the photos of the other babies"

Caitlyn: tears

But she smiled soon enough, until I had to put her in the car, then she clearly wasn't ready to go home.

Well I definitely can't complain, much rather she cries when we have to leave than crying when we arrive, to us a sign that she is happy there. The feedback we got from them is that she is so happy, that she settled well, says hello to whoever walks through the door, she eats whatever they put in front of her (did you hear that Bianca?) and she's the kind of child that is so easy to include in activities. Whereas some children still have settling issues after 5 weeks, Caitlyn is so well settled after just 2 days. I guess having an au pair was really a great decision if you take into consideration that she is used to other people and not just me.

2008-12-16

To be able to make a difference

For most of our journey we are just living life. Fair enough it is living life with childhood cancer, but we are still just doing what we need to, taking one step after another, living each and every day as best as we can. We laugh when we can, we cry if we have to, we focus on now.

So when people like Sharon at The Not So Secret Life Of Us tell us that they get inspired through our journey, then in one way I feel surprised, because it doesn't feel like we are doing anything special except living our lives, but it also feels so incredibly good to know that in some way we are able to make a difference, that in our own little way we can brighten another person's life.

Just on Saturday, Sharon had this cool Christmas party at her home and all her guests each brought some presents for kids at some of the oncology wards in South Africa. She's such an amazing person with such a big heart that despite her own difficult journey, she can do such a wonderful thing and care so much. She said her inspiration for this party was Bianca and I'm so glad that in our own way we were able to be part of it. And one day this is what I will tell Bianca (when she's old enough to understand), how she managed to change the world in her own little way. I think that will be so cool for her to know and to take with her for the rest of her journey.

And it is these little things that makes our journey worthwhile, to know that we were able to help make a difference.

So now to go along with the initiative that Sharon mentioned on her blog where we say thank you to people in blogland who manage turn our frowns upside down:

SHARON - I absolutely have to mention Sharon (even though I mentioned her above), I think she is one of the most amazing people I have ever "met". The honesty and the fun that she incorporates in her blog, the positivity that she shows despite the challenges that she face. I learn so much from her and she has become a true inspiration to me.

KRISTY - she can write about the most ordinary everyday thing and turn it into a work of art. And usually so funny that you sit there laughing so much it hurts. It was really just by accident that I stumbled upon her blog and have become a devoted follower.

RENEE - A very inspirational blog and I just love reading up on her and her amazing kids. Little Kennedy had AML, but also has Down Syndrome, her husband is far away (he is in the millitary). Her blog is always very uplifting and makes for such good reading. Sometimes it is quite funny, but it often makes me reflect on stuff.

There are loads more that I follow. Just scroll down and look on the right hand side and you will see all the links of all these blogs that I follow pretty much on a daily basis, like Always Ours, Amalah (another side-splitting, makes you laugh so much you'll fall off your chair, kind of blog), Chatabox, Laura Blow's blog, Liam's Journey, Living with CML, Peter Pirie, Super Relish, Ben fights Leukemia, and more, just go and have a look. (Okay, okay, I know I've got a slight addicition with blogs and blogging, but I bet I'm not the only one out there...).

"Where are the bedrooms and all the nurses?"

So this morning was Caitlyn's first full day at the daycare centre. She was all excited and she even smiled nicely for a photo when we were about to go through the "under two" section.

Then she walked straight to the play doh table, I was about to take a photo and she jumped up to the book area and then jumped up straight-away to go to the where the dolls were - so many things to see and do. I then said "okay Caitlyn, bye" and she thought I meant we both had to go. And then when she got a bit distracted I slipped out the door. I could hear her knock on the door, but no tears and she had a great day.

She did fuss a little at nap-time, but only because the older kids sleep on these cute little beds (really close to the ground) and she isn't used to that, but either way she still slept for an hour. When I collected her this afternoon, there was another little girl the same age as Caitlyn and who also started today. It sounds as if they played nicely together (or rather as well as you can play together at 21 months old). So when it was time to leave I said "Caitlyn, say goodbye to your friend" and she said "Bye fend".

It did feel quite weird not having Caitlyn here today and a couple of times I thought she was having a nap and wondering when she would be waking up, just to remember that she was at daycare.

This afternoon I rang Starship to chat to them about whether I should be worried about Bianca's runny tummy or not. The nurse then told me that I should organise a sample through our GP. So this afternoon, that's what we did - sorted out a sample. On the way to the GP's office, Bianca looked out the car window and said "Mommy, did you know in the old days people didn't have cars and they had to walk on the road". Aah, my little 5 year old is growing up...

When we walked into the reception area, Bianca looked around and asked "where are the bedrooms?", "where are all the nurses?" I tried to explain that we weren't at the hospital, but that we were at the doctor's office and that things work and look different at the doctors' offices. But of course Bianca only knows the way it works at the hospital where there are rooms with beds and a nurses's station and lots of nurses going from patient to patient. The last time she was at a GP's office was probably in May 2007 when she was initially diagnosed with tonsillitis.

I did consider writing in detail about our adventures this afternoon, but really, it wasn't exactly fun and the only words running through my mind was "eeewww, eeeewww, eeewww, couldn't this happen when Terence was home?". So now we will hopefully find out soon whether there is a bug or not. Hopefully not. I doubt it though, because she does seem generally well. So here's hoping...

When we left the GP's offices, Bianca saw the school next door (there is a big school next door to the GP's offices) and she said "that must be the hospital side" and I said "no, that's a school". I don't think she believed me.

2008-12-15

"Poo-boo" and "bye"

Today Cailtyn had a visit at the new daycare centre. She is due to start tomorrow and will go on Tuesdays and Wednesdays every week. So today was really just to have an introduction so she knows more or less what to expect and it won't be all new tomorrow.

We walked in and Caitlyn immediately spotted a Pooh Bear sitting on a low shelf "Poo-boo!" - her day was made! She then walked over to the table with play doh and made herself at home. So Terence and I said "okay Caitlyn, see you a little later" and she said "bye!!!" without even looking at us.

I think she will be just fine...

2008-12-14

A message to Santa!

Bianca has been having a runny tummy lately. Not constant like with a tummy bug, but certainly different to normal. She also doesn't have any fevers, she's still eating and drinking and seems generally well. So I'm not too sure if something is brewing or not and tomorrow I will give the hospital a call just to discuss with them if we need to worry or if we can wait a week for them to check it out (she is due at the hospital for clinic in a week). I hope it is nothing though. I'm so not in the mood for a hospital stay this close to Christmas...

Speaking of Christmas, this coming weekend (20th/21st) we will celebrate our Christmas. Now I would just like to clarify because I confused a couple of people. with a previous post - in New Zealand we celebrate Christmas just like everywhere else with Christmas Eve on the 24th and Christmas Day on the 25th. However, Bianca has her next clinic visit on the 22nd and that means the start of our 5 days of steroids for the month. If the last two months is anything to go by, we expect it to be a tough time with Bianca becoming quite emotional, grumpy and sad and she would likely not enjoy the actual Christmas day as much and so we thought if we celebrated it earlier, then that will be way more fun for her. She cannot wait and if she could open her presents today she would... She was so excited because when we went to the shopping centre yesterday a lady from the Telecom shop handed out some pictures for kids to colour with Santa's number here in NZ (0800 222 222) - and when you ring it you get his voicemail. Well, let me tell you he is one busy man - when she phoned his message said that fairy dust landed on some of the presents and all the toy cars escaped! Oh dear! But she got to leave her message to remind him what she would very much like for Christmas. You should have seen her face when she heard his voice on his message.

This coming week will be a happy and sad week at the same time.

So incredibly happy because on Tuesday Caitlyn is starting daycare on Tuesdays and Wednesdays every week and it is time for her to start doing some things with other kids in a daycare setting. When Bianca got sick that was one of the very difficult decisions we had to make, keeping Caitlyn out of a daycare setting because the risk at that point was just too great, there is still a risk, but we feel confident we are able to manage it better now. I've always loved the idea of my kids going to daycare because they get to play with so many other kids, they learn to share, they get to do all sorts of other activities which might not always be possible at home. But out of this initial decision to keep Caitlyn home, came a great solution - the au pairs we've had all along. First there was Sanna (from Sweden) and she certainly came at a time when we needed her the most. It was right at that time where Bianca still had lots of hospital stays and with a baby not sleeping through at that point, it was such a great help having her around. Then there was Sandrea from Malaysia and although she was only here for a month with us, it was such a great time having her too. And then Jody. Jody came all the way from Canada and became one of our family for 7 months. Each of these au pairs got to experience different stages of Caitlyn's development and my kids got to learn so much from people from other countries.

I've been making a list of the things Caitlyn says (and how she pronounces these words) and I realised just how many words she can actually say. Her longest sentences are "I see you" and "aw day law" (all day long). Hopefully this list will help the staff at the daycare centre understand if she suddenly holds out her hand and says "tick" (her hand is sticky) or she is busy eating and saying "Ro" (meaning she is pretending to eat Christiphor Robin, a dinner time game we invented to make eating fun) and so on, because of course when she says something she will continue repeating it until you show you understand what she said.

The sad part this coming week is that Jody is going home. She is leaving on Wednesday and it will be very, very hard to say goodbye. It is so hard each time these wonderful girls say goodbye to us. Each of these girls became part of our family and they will always be, even though they live so far from us. We've learned so much from them and they've been a lifesaver to us. Without them we really would have struggled.

Then just before I go - a big thank you to Sandra Masters and Terence's colleagues at his work for their very generous donation to Funrazor. It is much much appreciated!

2008-12-10

How would you see the stars?

Yesterday I read something very beautiful and so true in the latest Update Newsletter from the Child Cancer Foundation:

"I have learnt that on a journey, sometimes the road is very dark, but without darkness how would you see the stars?" (12 year old bereaved sibling Tamara Jenkin).

When I read that I thought "wow, that is so true and such a beautiful way to look at life and life's challenges".

And of course I was also reminded how often we think our situations are really bad until you hear of what some other people are facing, like grandmother Cathy James who has been looking after her three grandchildren for more than 6 years. There is Emma (7) who from a very young age had a lot of health problems like super-numerary tooth and severe infection of the tonsils (which Cathy suspects were linked to foetal alcohol syndrome) and then at age 3 was diagnosed with cancer of the saliva glands (which is known in heavy smokers or drinkers, but not really a type that a three year old usually gets).

Then there is also Ryan (11) who is autistic and has behavioural problems and Jack (9) suffers from acute epilepsy and high anxiety.

That sound so incredibly tough and challenging and makes us realise just how blessed we really are!

2008-12-07

Bianca, the artist

Bianca drew a picture of Dora the Explorer (one that she found in one of her magazines) and I thought she did a very good job! What do you think?

And it's that time of the year already

You know you have a 21 month old in your house when you put up and decorate the Christmas tree and then carefully move the couches in front of the tree so that your 21 month old cannot get to the tree to play with the decorations / try to eat the decorations / pull the tree down / try to climb the tree or whatever (we'll see how long before she figures out how to climb over the couches). But our tree is up and it is starting to feel like Christmas is coming. We won't be putting any presents under the tree until closer to the time because... can you just imagine if we put our presents out now and with a 21 month old in the house?

Today (Sunday) was a wonderful day. Today we had the Child Cancer Foundation Christmas party and it was held at Rainbow's End. We haven't been there for years now and so it was really cool to go today. Of course the nice thing is that Bianca is old enough now and so she had a fantastic time. They have all these really cool rides and Bianca is old / tall enough to try out a lot of these rides and her favourites (by far) were the Dodgems where she had the best time ever trying to bump into Terence and her other favourite was the log ride. She could tell me in detail what to do, how it works, what to expect and so on. Terence, Jody and Bianca went off and did all the bigger people rides and Caitlyn and I spent most of our day in the section for smaller kids. Caitlyn went from the bouncy castle to the Merry-go-round to the Dragon (a sort-of-mini, toddler friendly rollercoaster) and back to the bouncy castle, the Merry-go-round, the Dragon and so on. I have to say that the Dragon was by far Caitlyn's favourite and she must have gone on this one a good couple of times. Of course the empty stage in the barn was pretty cool too (the barn is like a big inside picnic area that they must use for events sometimes, but it was empty and open today and so we sat there for a while and Caitlyn had the best time eaver running across the stage).

Of course being surrounded by all this excitement and eating some picnic type of food that we packed, but mostly junk food (because you how can you go to a theme park and not eat some junk food?), I was surprised that Caitlyn had virtually no temper tantrums. She doesn't always understand why she's not allowed in certain places, why she has to leave a particular thing that she enjoys doing and so on and so I was pleasantly surprised when she coped well with everything. Even sitting in her stroller went down well (since she discovered that she is able to walk places, she's not so keen on the stroller and would voice her disapproval very loudly if you try and put her in the stroller) and when Terence and Bianca went off doing something she called out "te-whe" (Terence), Bakie (Bianca), but no tears.

At 3pm we went to the Chalets where the kids got to meet Santa and they each got a really big present. Caitlyn was a bit upset at first because as Santa arrived she went to sit on the chair next to him and was not impressed when Terence took her from the chair and put her on the floor next to him, but the kids got called fairly quickly anyway, so it didn't really matter. I have to say that this part is always a highlight in Bianca's book, seeing Santa and when he gives her presents, well you can't get much better than that :-).

The girls were incredibly spoiled and as a family we had the best day ever. We would like to say a big, big thank you to CCF and all the volunteers who made this day possible and special for us. Thank you so very much!

Shortly after meeting Santa we decided it was time to go home. Caitlyn was well-overdue for her nap and when we got home we realised that we were quite exhausted too and so we all had an afternoon nap (and woke up at 6pm!). Of course that just messed up our routine because Caitlyn would usually go to bed by around 6:30pm or 7pm and of course having just woken up at 6pm means that there was no way she would go to bed by 7pm, and so she went to bed rather late tonight. I suspect she will be a bit tired tomorrow morning, but that will just mean an early nap and in bed tomorrow night slightly earlier than usual. We suspect Caitlyn might be teething again which is why she would not have slept very well the past couple of nights.

And then before I finish - thank you very much to the Howell family for sponsoring me for Funrazor, it is much appreciated! I've had some really positive comments on the way I look now with my new hair "style" and a big thank you to all who helped me participate!

2008-12-04

The day started just like any other

This morning Caitlyn woke up at her usual 6am time (and prior to that at 5am, 3am, 1am) - we think it was a combination of her room being fairly warm (it gets sun pretty much all day every day) and possibly going through a growth spurt (oh what fun...).

Today started pretty much like any other - waking up, making breakfast for the kids, getting them ready to drop Bianca off at school, pack her lunch box, having a shower, fixing my hair (well, not really I'm one of those "wash and go" kind of people)...

Then at around 2:40 this afternoon I got Bianca from school and we caught a bus to the city for the annual Funrazor event. Bianca has a special t-shirt that she received earlier this year from CCF during their appeal when she appeared on the Good Morning show and this was a t-shirt that was specially designed by All Black Kevin Mealamu for the Child Cancer Foundation. She also wore her beads.

We saw Steve from Make-a-Wish there who was there to watch and support and Bianca's teacher Miss Hilton also came to watch.


It was great seeing Steve Price there (he is the Child Cancer Foundation Ambassador) and we met him on the Good Morning show earlier this year. He is so down to earth and so we went over to say hello even though Bianca suddenly became very very shy, hiding behind me. Steve also got his hair shaved today and it is his third year in a row!


While we were waiting Justin Brown (the MC of the event) one of the hosts of Classic Hits did a short interview with me and Bianca that will be going on the breakfast show tomorrow morning (5 December between 7am and 8am NZ time). Bianca was a little shy again, but for her effort she received a cool Hi-5 DVD. Thank you very much!


And while we were all waiting for the event to start Luke Thompson entertained the crowd with some beautiful songs.


At the last second Terence decided that he would get his hair shaved too and so Bianca got to shave both our heads (although she didn't do much on Terence's hair, and mostly shaved mine). The NZ Herald photographer was there and he took an instant liking to Bianca and took so many photographs which might go into the paper (we'll have to wait and see) and at one point he asked if Bianca could please stand on a chair so she could be a little taller.


There were some spot prizes too and Terence was lucky to win a spot prize - unfortunately for him, Bianca went to choose the prize:

(And no the hand wasn't part of the prize that's just my hand showing what the white pieces of fabric with scorpions on them are supposed to be. I guess we'll be putting this prize away for Bianca until she is much much older, seeing as Terence probably won't have much use for this).

And just in case you wonder if we actually got our hair shaved, we have some sun block, a hat and a certificate to prove it:


And of course the fact that we both now sport a size zero hair cut should be proof enough:


And tomorrow I won't have to fix my hair...

So why did we do it?

Well, from day 1 the Child Cancer Foundation was with us and they are still completely with us. Without their support this journey would have been incredibly incredibly hard and they are totally committed to the child with cancer as well as their family. They require $7 million each year to be able to do the work that they need to do and every single week around 10 kids in New Zealand get diagnosed with some form of cancer, it is a long long journey (for us a 2.5 year journey of active treatment and then still tests after that) and it is emotionally and financially draining on many many families who suddenly get thrown into the horrible scary world of child cancer. No warnings and no time to prepare. Unfortunately this organsation gets no funding from the government or other cancer organisations and yet without them many of us would be totally lost!

Here are some photos at different stages of Bianca's treatment:

And today we had the opportunity to participate and give a little something back (thank you to all those very generous supporters who donated and sponsored, thanks to you all I managed to raise $2,265). A big thank you also to Jennie and Jo (my two latest sponsors). Jo actually stopped me after school to give me her donation so thank you so very much!!!

Today we had an absolute ball:


And we hope that you are having a great time too!

2008-12-02

Busy times ahead

Firstly, thank you Sabihah Mohamed and Brian & Marg for sponsoring me for Funrazor. Not long now! Bianca is so excited that she will help shave my hair and she keeps counting the days!

Earlier in the week, I had a pretty bad cold, but that has almost cleared now. It is so not fun feeling all miserable and trying to sleep when you feel like you are going to cough out your lungs and you are trying to breath but your nose is blocked. At the moment Bianca is feeling really good and happy and we are back to her coping well with her full school day. Thank goodness steroids are only 5 days a month!

I cannot believe we have reached December already - wow! Time just went by so incredibly quickly.

We have a busy time ahead of us as school starts winding down.

This coming Sunday we have the Child Cancer Foundation Christmas party and that is going to be really exciting and so cool to meet some of the other families. Because we only go in once a month now we haven't really met a lot of the other families, and I have to say that I do miss that part of Wellington quite a bit. Catching up with people who are going through what you are going through.

The weekend of the 12th - 14th of December Terence will be in Wellington for work.

Then on the 17th Jody will be leaving us and going back home to Canada. We will really miss her and after 7 months here, it does feel like she's become one of the family. And I suspect there will be many days after that that Caitlyn will come down the stairs asking "Do-do?" or when she wakes up from her nap shouts "DOOO-DOOOO!!!"

School breaks on the 19th for the December holidays and starts again around the 4th of February 2009 (It feels so weird writing 2009 and then Bianca will be in Year 1 and no more a New Entrant). Sometimes I still can't believe how lucky we are that Bianca is able to go to school, when earlier this year the Christchurch doctor wasn't sure if going to school already would be a good idea. I'm so pleased it's worked out this well and Bianca really loves going to school. It is so exciting that my little girl is able to read as well as she is, can count all the way to 100 and has learned so many things. Just today she was telling me all about stick insects and how some people love eating them (yuk!!!) and how they have to use camouflage. She also explained how they manage to hold onto trees and things like that. Despite my total dislike of all creepy crawlies and things born naturally with 6 feet or more - I think Bianca has found this term's theme (bugs and mini-beasts) really interesting.

And then we will celebrate Christmas on the 20th and 21st of December. We'll do our own presents on the 20th. And of course my mom was kind enough to send a parcel to us recently and a very good friend, Riki also sent some stuff - so the kids will have lots of fun. And then of course when they wake up on the 21st they would have realised that Father Christmas came in the night (the absolute highlight of Bianca's Christmas). This year she actually wrote him a list of what she wants and today we went to our shopping mall where they have a mail box for Father Chrismas and she posted her letter. She was so excited and I think she can't wait for it to become Christmas. We are still trying to work out the best time to put up our Christmas tree because Caitlyn wouldn't really understand the whole concept of "you don't touch the tree and you don't play with the decorations" and so on.

So this way we can celebrate Christmas before Monday the 22nd which will be our theatre day and we'll have to be at the hospital pretty early for Bianca's usual blood test, doctor's check-up, IVIG, Vincristine, theatre for chemo into her spine (through lumbar puncture) and then the dreaded steroids for 5 days. So even if this particular week turns out a grumpy week, at least Bianca will have enjoyed Christmas before the steroid side-effects hit us.

And now I need to stop rambling and go off to bed and try and get an early night tonight.

2008-12-01

So proud to be part of it!

Thank you to ClubCraig, Douglas and Ester Efstratiou for sponsoring me to participate in Funrazor. I really appreciate all the wonderful support, it means just so much to us!!!

Today I spoke to one of the CCF ladies and I was incredibly shocked to learn that the Auckland branch has around 10 newly diagnosed kids every single week. TEN!!! That is a lot of kids with cancer. That's the Auckland branch alone and not counting in the other branches in New Zealand. It would be so cool, when one day there would be no more child cancer at all, but unfortunately it doesn't work like this and every single day a new family starts walking this journey. I can honestly say that this journey has probably been the most exhausting thing we've ever had to do. If we had a choice we wouldn't be walking this journey, but if we were there again and had to walk this journey again, then we would do it without hesitation, because we do what we need to.

Just the other night a friend (who is also part of this club) and I discussed why some of us end up sharing our stories in the media and some of us choose not to. I know many of us just want to become "invisible" like before cancer. Get back to the way things were before cancer. For us, personally, it is about giving something back to the wonderful people at CCF who stood by us from day 1. I also mentioned to her that I sometimes wonder if it wasn't for the human faces whether people would take note of child cancer, certainly before Bianca got sick we never knew anybody who had a form of child cancer, so for us personally, it is important to help them put the "human face" out there. I think sometimes it might be easier to look the other way, because none of us think (or want to think) that something like this will actually happen to us. It just happened without warning. There were some signs, but we were oblivious, we had no idea and then suddenly you get hit with the news! So it really is so comforting that there is an organisation like the Child Cancer Foundation there for us, I cannot say enough how much they mean to us and the difference they have made and how much more manageable this journey became with them right by our side.

Unfortunately the Child Cancer Foundation doesn't get any funding from the government. Without this much-needed funds they are not able to do the work they do and so initiatives like Funrazor is a very very important event in their calendar. I feel so proud to be part of this exciting event. Last year when I did it, I remember what a liberating feeling it was getting my hair shaved off.

So thank you so much to all of you supporting me for Funrazor. Every little bit helps and makes a difference.

2008-11-28

Last night tonight!!!

A big thank you to Casey O'Leary, Char and Marg for sponsoring me to participate in Funrazor. Only 6 more days... if you would like to sponsor me, please click here.

Yesterday was a better day, but only because Bianca wasn't as sad and emotional. She was quite tired though and around 12pm the school called and asked if I could come and get her. She didn't want to eat her lunch, she was quiet and just seemed tired. As I got there all the other kids were out playing and enjoying the sunny day and I couldn't help realising how very different life is for us. We try very hard to do normal, ordinary things, but unfortunately things like the steroids often interfere with things like that. But she had a long nap after school and a definite improvement last night.

Today she coped with the full day at school, but once again, really tired after school and tonight.

Thankfully, tonight was the very last night of steroids for this month.

2008-11-26

Oh how I hate it!

Right now Bianca is sobbing, uncontrollably sobbing. No particular reason, everything is making her sad, incredibly sad.

I hate what the steroids are doing to Bianca. I hate how it constantly gives her cravings, makes her ask for something and then saying she is not hungry, I hate how it makes her not sleep well and then waking up early and then making her feel tired during the day. I hate how it makes her sad, how it makes her grumpy and emotional and clingy. I hate how there is nothing we can do, except sit and wait it out.

I hate steroids and this week seems particularly challenging and tough.

I'm hoping for a better day tomorrow!

2008-11-25

Question for the day

Today Bianca spotted the word "chef" on one of the restaurants close to us. She wanted to know why we say a "sj" sound and it starts with a "ch" sound. Oh the joys of the English language...

A really full-on day!

One of the very very common side effects of Dex is that it makes kids sad, emotional, unhappy, have mood swings and can even cause temper tantrums. Well, it is day 2 of our steroids for the month and I am counting the hours until Friday. It's been an incredibly tough and difficult day for Bianca emotionally and every little thing set her off. Bianca was also very very clingy. Earlier today she was okay, but this afternoon and evening was pretty full-on.

This does make me wonder how this will affect our Christmas celebration as Bianca will be on steroids then and it seems likely we may have to shift our celebrations to another date.

Tonight in the bath Bianca did perk up a little bit and we were talking about some stuff in general and then she mentioned that she misses her Ouma Amanda (Bianca's granny / my mom). It seems as if Bianca has really fond memories of spending time with my mom when she was here last year and every so often Bianca will mention her or something that she remembers from some of the fun games my mom played with Bianca when she was here. My mom has always taken such an active interest in us and the kids and pretty much on a weekly basis (sometimes more often) we can count on a news email from her side and usually she would respond to something I wrote about in my blog. That really means such a lot to us that we have this kind of support from such a special person, that even though she is so far away, she makes the effort to stay in touch with her own normal news. So thank you so much Mom!

So now we'll try and get an early night as we anticipate tomorrow to possibly be just as full on with the steroids!

And just before I go, just wanted to say thank you so much to C, S & A and Michele and Marc Danneels for sponsoring me for Funrazor. I am so close to reaching $2,000, thank you for supporting such a great cause! 9 More days and then the big day!!! If you would like to sponsor me, please click here.

Thankfully just a short stay.

Thank you so much for all the wonderfully supportive comments and emails.

Bianca was discharged yesterday afternoon after getting her monthly IVIG and Vincristine. She's much better in the sense that she has no more fevers (I think it shot up to 39.4 degrees - or somewhere there on Sunday night). So now Bianca needs an antibiotic 3 times a day until the course is completed.

Last night she did indicate her ear was still a little sore and she is not 100% herself and it doesn't help that she is also on steroids at the moment.

I was reminded how tough a hospital stay can be on all of us, trying to work out what to do with Caitlyn (thank goodness for Jody), what to pack, the logistics of Terence going to work and me staying with Bianca and be back home in time for Caitlyn and so on. So I'm glad it was just a short stay - I had visions that this might end up a long stay.

The stay was a bit tough on Terence as they put them in a shared room and being in a shared room you have no control over when the other people would switch off their lights and when they would switch off the TV. Around midnight they brought in another child who screamed and screamed and screamed and he was then moved at some point. And of course the 3 IV machines in the room would all beep throughout the night - all at diferent times.

But today Bianca is home and that is great! We decided to still keep her home to see how she is and if she doesn't complain of ear ache anymore today then she will go to school tomorrow morning.

So Bianca's medicines today are:

Breakfast
1 x 400mg Acyclovir tablet (anti-viral)
2.5 tablets Dexamethasone (steroid)
6ml Co-trimoxazole (antibiotic to prevent a certain type of pneumonia)
6ml Augmentin (for the ear infection)

Lunch
1 x 400m Acyclovir tablet
6ml Augmentin

Supper
1 x 400mg Acyclovir tablet
2.5 tablets Dexamethasone
6ml Co-trimoxazole
6ml Augmentin

Wait 2 hours

1 x 400mg Acyclovir
1.5 tablets - Mercaptopurine (chemo)

I'm just thankful Bianca can swallow tablets - thank you PlayKate!

A big thank you to Johan, Lisle, Anthony Theuninck, Mike Kmiec for sponsoring me for Funrazor - you guys are making a big difference! If you would still like to sponsor me - please click here.

2008-11-23

Admitted

First let me start off by saying thank you so much to Catherine for sponsoring me for Funrazor - I really appreciate it! The clock is ticking and only 11 more days and then I will get all my hair shaved off. If you would still like to sponsor me, please click here.

It all started last night with Bianca waking up with a sore ear. In the end she slept with me in bed so I could be near in case she needed me. She woke up a number of times and finally at around 2am I got up and gave her some pain meds to see if that might make her feel a little bit better.

This morning Bianca's ear was still very sore, she was crying, and just generally not really herself. When we rang the hospital her temperature was sitting around 37.4 degrees and the hospital told us that we could bring her in and they would have a look. So at around 11am we went to hospital.

Bianca's temperature by this time was around 38.4 and so we needed to get some bloods done. We then saw one of the registrars who confirmed that her levels were all good, her neutrophils jumped from around 2 last month to around 3 now (this is often a sign that kids are fighting some kind of infection). Bianca has a bit of a cough, but her chest is clear, it is really just that her ear was quite red and swollen inside, so likely an ear infection that we are dealing with. But just to be safe, they took another blood sample to culture to see if there is something else. For most of the time Bianca slept and she was just generally unhappy and grumpy. So Bianca is admitted tonight for fluids and IV antibiotics and they will review tomorrow morning. It's funny how these things always seem to happen on a Sunday...

Regardless of how long Bianca might be in, I do expect tomorrow to be a little bit of a busy and longish day as Bianca will have her monthly clinic visit so she'll get the usual Vincristine and her IVIG and then the dreaded steroids.

Tonight Terence is at the hospital with Bianca and I will be home with Caitlyn and we'll take it from there.

2008-11-21

Thank you

Just wanted to say a big thank you also to The Wolfe Family, Jaime, joanw, Kristan Mildren and Sharon Bennett for sponsoring me to participate in Funrazor. Only 13 more days and I will get all my hair shaved off.

If you would like to help, you can:


or,

  • You can sponsor me to shave off my hair - I don't mind shaving it all off. I did it last year and this year I will do it again! Visit my fundraising site by clicking here. It is a secure site that allows you to contribute using a credit card and it goes directly into the Child Cancer Foundation bank account (and it also enables people from other countries to contribute and support Bianca as well). You will even get a receipt to show the payment. Every single cent raised goes directly to the Child Cancer Foundation. If you are scared of the whole online payment thing, please let me know and if you are in my area, then you can donate cash and we will complete your details on the Funrazor form and you will be sent a receipt or I can let you know the actual bank account number for the Child Cancer Foundation and I'm fairly certain they accept cheques as well.
So there are some options to get involved. It doesn't matter how big or small the donation, every little bit will make a huge difference.

The Child Cancer Foundation doesn't receive any government funding and yet they do such important work and people like us simply would not have coped with Bianca's illness if it was not for them. Raising money through events like Funrazor is a way for them to raise awareness and to raise much-needed funds for them to continue providing this service. None of us chose for our children to get sick, it happened, without any kind of warning and for many of us treatment can take years and even after that there will still be tests and things like that.

I am participating because I am so very passionate about the Child Cancer Foundation. This is our way of giving back to them and saying thank you for all the wonderful support they give us. Many of you asked before what you could do to help us and this is definitely a way you can help!

On the 4th of December I will be there, getting my hair shaved off as a tribute to my wonderful little girl Bianca who has inspired me throughout her journey and continues inspiring me every single day of our lives and also to say thank you to some of the wonderful people who have been there for us, ever step of the way!

Saying goodbye to Kyah

This morning Terence and I flew to Wellington to attend little Kyah's celebration of life.

So this morning at around 7:30 Terence and I got to the Albany bus station and caught a bus to the city. Got there and we had to walk around a block or so to get to the stop for the airport bus and because it was just around the corner we ended up running (with me in high heels) (we must have been such a sight!). But we managed to catch the bus and from there got to the airport with enough time to spare to have breakfast. They have a new system where you can check in online (although we thought that "check in" means you are actually at the airport and checking in before you get to the airport sort of defeats the purpose of the whole making sure you are at the airport, but who are we to complain if it makes our lives easier). On the Qantas domestic flights they sometimes still have business class seats although don't offer a business class service anymore and so because we checked in early we got upgraded to the business class seats. How cool is that? So we got to Wellington and as we came out of the arrival section the bus was about ready to leave and we sprinted (me still in high heels), but we made it. Got to the city and because our flights were slightly late we were at risk of missing our train and so once again, sprinted all the way from where the bus stops to where the trains are and what do you know? We missed the Johnsonville train. Walked back to the bus stop to see if there was a bus that would arrive sooner than the next train and we were in luck!

And so we arrived in Johnsonville promising ourselves that we would not be running anymore. As we came around the corner to where the chapel is we noticed just about everybody had a teddy bear and we did not have a teddy bear, so we ran to Pumpkin patch (who didn't have a good selection on display), then ran to Warehouse who had no teddy bears at all and back to Pumpkin Patch and managed to buy a really cute little teddy bear. (So much for "we won't be running anymore").

And then later when it was time to go back we ended up waiting for the bus to the city and had a bit of a wait for the bus to the airport and we made the airport in time to take a bit of a break and eat some supper. Got to Auckland, waited for the airport bus and then finally arrived in the city. So we took a nice walk to where we would have to catch the bus to home and suddenly we could see the bus arriving and we were still almost a block away - so there we went, running again!!!

Running in high heels, not good! Running when you are as unfit as me and in high heels, even worse! I am guessing I must have run around 1 km today and for somebody who doesn't normally run, that's a lot!

Anyway...

The service was absolutely beautiful, but so incredibly sad. Kyah's big brother read the most beautiful poem he wrote for Kyah, they shared a bit of a favourite part of a Winnie-the-Pooh story, 2 of Kyah's grandparents and Marg from CCF had a chance to give tribute to the bravest and coolest "almost three year old" and Marg shared a really nice story about water bugs (if I remember correctly) turning into dragonflies. And Shanell also read a beautiful poem. It was such a beautiful service. But I can't remember when last I was that sad (well, reading the update that Kyah relapsed and also that she passed away, that was very, very sad too).

Little Kyah, you achieved so much more than so many people would ever achieve. You brought together people from all over the world, you inspired us all, you taught us so much. I'm so happy that I have had the chance to have met you, and thank you for sharing your story with me. Little Kyah, we will miss you so much, but we will never ever forget you!!! Rest in peace beautiful little girl and dance with the butterflies!

Shanell, Jason, Kaleb and Jordan - thank you for sharing your journey with us. Our hearts are broken for you, know that we are always there for you!