And so we continue...

This morning Bianca asked me to make her a ponytail. So I managed a little one at the top of her head. Her hair is still quite thin and still pretty short and as soon as I was done she said: "thank you, now all the kids at my school will know I'm a girl". For most of it having short hair doesn't really bother her too much, but no doubt she must have had some "boy" comments from some kids who are not in her class, and her hair is the shortest of all the girls in her class.

Bianca woke up pretty happy, but then at around 12pm I got a call from the school. Bianca just wasn't herself and complaining of a sore tummy. So I went to get her and brought her home. For the rest of the afternoon she was very clingy and pretty sad. So I guess there is a chance tomorrow morning that we would rather keep her at home, but we'll see. I really really hate steroids. I cannot wait for Saturday. However our steroid dose isn't nearly as bad as the dose little Kyah was on for around 3 weeks. Bianca's daily dose is 5mg a day for 5 days each month. Little Kyah was on 20mg a day for 3 weeks and they have now lowered it to 10mg. Now that is tough!!!

Bianca is pretty disappointed with the advertising strategies of some of the toy companies. For a while now she really really wanted Father Christmas to bring her one of this Fur Real pets (the white one) and then you can put it into a little pink handbag and take it with you wherever you go. The idea of this toy is that it resembles a real dog. So yesterday I asked her if she really is sure she wants to ask for it. I showed her how it doesn't really do much other than move its head (making a bit of a mechanical sound in the process), makes something that resembles a barking sound and other than that it doesn't do anything. So she stood there saying, "but I thought it would follow me". "Well yes, it does, but only because you put it in the handbag and carry it wherever you go". So in the end she decided that "no she doesn't want this anymore". So now she'll ask Father Christmas to bring her a big surprise (but not the doggie), oh and a Rapunzel DVD (which I know "Father Christmas" already has in stock). So a bit of a lesson to learn, that not all toys are the way they show them on TV.


How many doses does it take?

One dose. Just one dose - that's how many doses it took for us to experience the side-effects of our steroids.

Yesterday morning Bianca got her first dose of her steroids for this month and by yesterday afternoon she was a little bit on the emotional side and started becoming a bit clingy. Today was day 2 and whilst she coped fairly well with school, she was a bit on the tired side and she dropped some books on her foot which caused her to cry and tonight she is just not herself. She is sad, grumpy, not in the mood for playing or eating, complains of a sore tummy (but no fever) and she is very very clingy. Uggh! I hate steroids and I can't wait for Saturday when it will be our last dose for the month. And if this is how she is on this slightly higher dose, then we are going to have a very "interesting" Christmas.

The part that I hate the most of this whole steroid / chemo business is how it messes up Bianca's eating. Before she got sick she was a little bit fussy, but at least we had some options. Nowadays she won't eat things like spaghetti bolognaise, macaroni, two minute noodles and a range of other things. Getting her to eat a variety of vegetables and fruit is an incredibly frustrating thing and it is hard. If she wasn't sick and wasn't getting medicines that can make kids not feel 100% or take away their appetite or give them cravings or change the way things taste, then we could resort to time-out or something if we needed to, but it isn't her fault, it isn't because she is naughty.

It's not that she is not eating, but she is very very selective with what she wants to eat. At least she does eat apple slices and grapes (providing they are green seedless grapes) and she'll eat the same stuff in her lunchbox every single day and at least she does eat some breakfast cereals and toast, and if we go out she usually wants Subway, so I guess we can't complain too much. But still, it would be nice if we can just all eat the same meal every once in a while.

At the moment I do feel a bit tired. Last week was a busy week with Caitlyn and her rash (and then a GP visit and blood test), then there was a day that I had to sort out our annual warrant of fitness for our car and waiting for new tyres to be fitted, then on Monday this week was a public holiday (and whilst it is nice, it does throw your whole week out of sync) and yesterday was a long and exhausting (although good) hospital visit and then tonight seemed full on with the effects of the steroids. So right now I'm about halfway with my weekly house clean (which didn't go quite as planned last week and last week I managed the basics, but didn't do all I needed to do) and if we could drown in laundry, well then I guess we are pretty well on our way. And in between I'm trying to get going with a very special project (but can't say too much just yet). Today I managed to do some of what I need to do and no doubt tomorrow will be spent trying to do the rest. But we'll get through it.

I guess it is also this time of the year. It feels as if this year is just going so fast that I sometimes wish it would just slow down for just a little bit to clear my head and catch my breath. A funny thought though because part of me do wish that time would fly so that we can get through the next 10 months as fast as possible to get to that last day of treatment, although in some respects being on treatment does feel safe and going off treatment is a pretty scary thought - that's when the waiting will begin and the "what ifs" and the "is that really just a bruise?". But I'm rambling - we really can't complain because for most of it things really do go well, I look at my little girl and she is just such an inspiration to me and I look at her going to school and making friends and being happy about little things. And I look at Caitlyn being so cute and saying the cutest little things. We really are so blessed!

Jody discovered the latest Simple Plan single called Save You. What originally inspired Pierre (the lead singer) to write this song was his own brother's battle with cancer (which he won). It is a beautiful song and has such nice words and it is now one of my favourites:

Save You

Take a breath
I pull myself together
Just another step till I reach the door
You'll never know the way it tears me up inside to see you
I wish that I could tell you something
To take it all away

Sometime I wish I could save you
And there're so many things that I want you to know
I won't give up till it's over
If it takes you forever I want you to know

When I hear your voice
It's drowning in a whisper
It's just skin and bones
There's nothing left to take
No matter what I do I can't make you feel better
If only I could find the answer
To help me understand

Sometimes I wish I could save you
And there're so many things that I want you to know
I won't give up till it's over
If it takes you forever I want you to know

That if you fall, stumble down
I'll pick you up off the ground
If you lose faith in you
I'll give you strength to pull through
Tell me you won't give up cause I'll be waiting if you fall
Oh you know I'll be there for you

If only I could find the answer
To take it all away

Sometimes I wish I could save y ou
And there're so many things that I want you to know
I won't give up till it's over
If it takes you forever I want you to know
I wish I could save you
I want you to know
I wish I could save you (oh)


Monthly hospital visit

Today was a long day for us. It was our monthly hospital visit, but not a theatre visit so Bianca was able to go to school this morning and then this afternoon we had our clinic visit. Things are going really well at the moment. So well in fact that they upped her daily Mercaptopurine. After they upped her Methotrexate last time, her counts dropped slightly, but not really enough. They do want to have the neutrophils sitting around 1.5 and currently ours are still a bit above that. So after this increase we are expecting that her counts will be dropping.

They didn't make any other changes and all other medicines will be staying the same. Still getting the daily Acyclovir tablets as well as her monthly IVIG transfusions.

The doctor indicated that Bianca's hair still seems a bit on the thin side and we'll just wait and see what it looks like by the time her treatment ends in 10 months time (10 months and 2 weeks to be exact).

And today we are one step closer to normality - Bianca is able to go back to swimming (providing her counts stay stable which for the time being they are). So we will look into swimming lessons again, but of course will need to make sure that the swim school lets us know of any cases of chickenpox, measles and other serious diseases. Bianca is extremely excited though and she cannot wait! We are so pleased about it for her too!

But does that mean we are past any risky periods? No, until the end of treatment there will be no time where we don't have to worry about risks and we always have to be careful - at school, if we do swimming, if we do activities with Caitlyn and even if we have people coming to visit. There are times that our risks are lower like right now with our good counts, but of course these counts are expected to drop and can drop at any time. If they drop too low, then we are back to being isolated and have to keep away from other people. Of course we are hopeful that it won't happen as it is great just doing some "normal" things again.

For the time being Bianca is still sick. She still has leukemia. She may be in remission, but to us that means having less than 5% cancer cells left in her body - it doesn't mean no evidence of disease, but good news for us is that right now on Bianca's clinical study the event-free survival rate is sitting at above 90% and that is great and positive news for us!

This week we have our monthly dose of steroids again and this afternoon Bianca became pretty emotional and clingy so it seems as if we might be in for a couple of rough days. And if I do my calculations right, then we will have Christmas on Steroids this year - so it will be interesting to see how she copes, and we'll just have to be flexible and see how it goes and if we need to celebrate Christmas on a different date, well then so be it.

But other than that, things are generally going well at the moment!


Just for a laugh

Before I start tonight's entry I'd like to tell whoever may not know, when you pronounce my name you say "Leah" and not "Lee" as many people do pronounce my name. I have the Afrikaans spelling of the name "Leah" and therefore no "h" at the end of my name. But you pronounce "Lea" as "Leah". Okay, so now that I have told you this, tonight Bianca came to me and she said:

Bianca: "Why are you Lea and not Bee-ah (beer)

Me: "I don't know, why?"

Bianca: "Because you are not fizzy!"

I could not help laughing. She does like telling jokes and one of her favourites is:

Bianca: "Knock, knock"

You: "Who's there?"

Bianca: "I'm Up"

You: "I'm Up Who?"

Bianca: "Ha-ha, you said you're a poo!"

Now on to other things:

Caitlyn seems to be better and the rash seems mostly gone. The doctor called tonight and at first I had no clue who he was at first (it wasn't a doctor that I have seen before and of course even though he promised to phone this weekend, I sort of thought I'd have to wait until next week). He indicated that it probably was just a reaction to a viral infection and that her blood test results came back just fine. So that is a relief. Of course I'm not too sure what Bianca's blood results are like and just hope that she doesn't pick up whatever it was that Caitlyn had. Hopefully the IVIG was enough to see her through and hopefully her counts are still okay, but we won't know until Tuesday when we are due back at the hospital for our monthly visit.


Rashes, GP visits and a blood test

A couple of days ago Caitlyn had a high temperature. This whole week she's been fussy, doesn't have the greatest appetite and have moments where she is not 100% herself (of course that could just be an early onset of the Terrible Twos...). And when she woke up from her nap she was very unhappy.

This morning we noticed a rash all over her chest, neck and spreading to her tummy. Uggh! Just what we need! I have to say the one thing I cannot wait for is to reach the end of treatment and get levels back up to normal and not have to worry about rashes and things. So I rang the GPs office and what do you know, the words "baby", "rash" and "immunocompromised older daughter" in the same sentence really does open doors for you. We got a slot within 30 minutes, so off we went.

The doctor did the usual, took her temperature which was normal, looked inside her ears which looked fine, looked inside her mouth to see her throat which was a little red, listened to her chest which sounded clear and of course the rash - he described it as a "mac-pap rash over trunk" and at one point wanted to know if these spots had a "halo" around it (hmm, a what?). So he basically said it doesn't seem to be an allergic reaction because it was too wide-spread and was more likely a viral illness (possibly roseola, but not likely to be chickenpox). But he wasn't too sure and so ordered some blood tests to rule out some of the really serious viral infections, because of course with Bianca being an immunocompromised patient we have to be really careful of infectious viral infections and things like measles, chickenpox and so on could become really really serious for kids like Bianca.

So Jody and I then went to the lab to get a blood test done on Caitlyn. (Now where is Terence when you need him?), she was pretty happy at the GPs office and confidently walked in, sat on my lap and allowed him to do all his checks (even the swabs that he took from her throat), but when we walked into the lab for bloods, she started freaking out and so it really wasn't the most pleasant experience with Caitlyn screaming, me holding her tightly against me to prevent her from moving, a nurse holding her arm still and another one getting the sample of blood.

And now we wait until we get the results. In the meantime I have called the hospital to find out what they want us to do with regards to Bianca and whether we need to worry or not. The problem is that Bianca would have already been exposed to whatever this may be and we can now only sit and wait to see if Bianca develops a fever which would usually be a sign for us that Bianca's picked up an infection. Tonight Bianca has been complaining of a sore tummy. Not too sure what that is about as she isn't on the steroids this week (but will be again next week) and this can sometimes cause a tummy ache. So we'll just keep an eye on that too.

If Caitlyn was participating in the Beads of Courage initiative, then for today she would have probably earned a blue one for the doctor's visit, a green one for the throat swab and a black one for the blood test (and I would have probably taken a special bead because it was such a difficult experience for her and she was pretty good even though she cried).


Our magic wish part 2

Yesterday I received a call from Steve (our Make-a-Wish volunteer) and he mentioned that as part of Bianca's Make-a-Wish on Sunday, they wanted to give her some extra presents from Make-a-Wish, but that it didn't arrive in time. So we kept it as a surprise for Bianca and tonight Steve arrived with this big box. Well, you should have seen Bianca's face when she realised it was for her. She had no idea what to expect and couldn't wait for Terence to open the box.

Well, what a wonderful surprise! She got a little Barbie laptop, a kid-friendly digital camera, some stickers, a Make-a-Wish t-shirt and hat, a DVD with Barney songs, a Decorate-your-own-t-shirt kit and a Decorate-your-own-hat kit and a little Kiwi soft toy wearing a Make-a-Wish t-shirt.

Bianca couldn't wait to get started on the little laptop and as soon as Terence put batteries in the camera, she proceeded to take loads of photos and almost blinded Steve in the process. Here is one she took:

Wow, what a wonderful surprise and so much more than Bianca wished for! Thank you so very much to Steve and to Make-a-Wish. This was so incredibly special, amazing and magical and truly made Bianca's day. First meeting Suzy and then tonight getting this wonderful surprise, thank you so very much!


A fussy day for Caitlyn

Last night Caitlyn had a bit of a rough night, well, I guess it started with her not really wanting supper. So she woke up a couple of times during the night and at some point (probably around 3am) she wanted Terence to hold her and rub her tummy. This morning was okay, but she was still fussy throughout the day and every so often she would become slightly happy and settled and then the next moment all grumpy and fussy again and her temperature was slightly high at some point. She wasn't really interested in breakfast or lunch, but finally ended up eating supper. Right now she does seem fairly happy in the bath. So I'm hoping that after a good night sleep, she'll be back to her old self again tomorrow.

Bianca is still very much talking of yesterday - it was such a fantastic day, she watched some of the Suzy episodes on her new DVDs and last night Bianca took the unicorn with her to bed. This morning Bianca woke up and briefly complained of sore legs, but she seemed okay and so she went to school and then after that had a play date with one of her school friends. She went home with them and so it felt quite weird not having to pick her up from school. She had lots and lots of fun. She said they played school and she was the teacher. She was Miss Hilton (her teacher's name). My little girl sure is growing up.


A wish come true

268 Photos - that's how many photos I took at Bianca's Make-a-Wish. Today (Sunday) was the big day. The wish that she really really wanted was to meet Suzy from Suzy's world and spend some time with her doing baking experiments. All I can say is wow! What a great day!!!

Bianca first watched Suzy's World when she stayed in the hospital and she took an instant liking to Suzy who is such a great presenter and so funny and of course the fact that Suzy's World is all about doing experiments or finding out why things work the way they do. More recently she's been borrowing some of the DVDs from Terence's work and we even have Caitlyn now walking around asking to watch "Su-shoo" - so I guess we do watch it quite a bit. But it's one of those type of shows that you really don't mind watching over and over.

We knew we were going to be picked up, what we didn't know was that it would be a stretch limo and that was so cool. Of course Terence liked pressing all the buttons and Bianca was so fascinated by it all. We were taken on a different route to the city than we would normally take and got to see a different side of the harbour bridge. We had such nice views.

The meeting with Suzy was at the Quadrant Hotel in the city. We met Steve from Make-a-Wish and some of the staff from the hotel and I have to say this is a beautiful hotel. We went all the way to the top (the Penthouse) which was on level 23 if I remember correctly.

And then the big moment arrived and Bianca got to meet Suzy for the very first time. Before the time Bianca drew a picture for Suzy which she then proudly handed over.

And then the fun started - Bianca got to wear a special white scientist coat (after all she was about to do some serious investigation) and at first they experimented making some cupcakes and the first one had all the right ingredients (Suzy had to compensate a little bit because when Suzy said "heaped tablespoon" Bianca made it "HEAPED") and for good measure they added some chocolate chips to the recipe. The second one had no egg and the third had no oil. Bianca wrote some signs so that we would know which was which and then it was time for the test taste. First Bianca felt them all with her fingers and the one with everything felt sort of springy and the others a bit harder. The one with everything tasted really nice and the others much drier, although the one with no oil was probably better than the one with no egg (taste-wise). We finally decided that as long as you add chocolate chips to your cupcakes it doesn't really matter if you leave things out...

Then they made ice-cream. Now I remember when Terence made ice-cream years ago, it took a long time before it was ready to eat and we would mix it all up, put it in the freezer for a while, then take it out, mix it up again, put it back in and so on. Suzy's way is a really simple and quick way to do it - almost instant and you use crushed ice and salt in a plastic bag and then in a separate smaller bag you put your ice-ream mixture (with chocolate chips - Bianca's idea) in and put it on the inside of the bag with crushed ice. And then you shake it up. And voila - ice cream. Bianca loved doing the taste-test.

Then Suzy was busy going through her recipes to see what else would be good to try out and Bianca asked to do chocolate ice cream and so they experimented doing chocolate ice cream and we learned that it is much easier for chocolate powder to mix up when you add it to your milk and heat it slightly in the microwave (so I guess this experiment was also to find out the best way to dissolve chocolate powder with milk). Of course, you can't make ice-cream without adding those chocolate chips...

Bianca was all ready and fired up to move onto making strawberry ice cream, but it was time to start packing up by that time - so I imagine we will be doing this really soon.

Suzy kindly wrote Bianca a note and signed it on special Suzy's World paper and Bianca also received 4 DVDs with some Suzy's World episodes. That is so great and now Bianca will be able to keep these instead of handing them back to the library and I can see many more days of watching Suzy's World. Bianca also received a number of factsheets for us to read and try out at home.

Bianca showed Suzy all her beads and she proudly shared which beads would have been for which procedure or treatment. I have to say we are really proud of our beads and we think this is such a great initiative!

And then it was time to go home and on the way out Bianca received a beautiful fluffy unicorn, a hat and a pen from the hotel.

We would like to say a big big thank you to Make-a-Wish (and in particular Sue and Steve who came through to meet with Bianca to discuss her wish, Steve for all the telephone calls to keep us informed and for everything they organised to make this happen), to Suzy for letting Bianca spend the time with her (and letting us go crazy with the camera), she was so great with Bianca and so down-to-earth and she really made the day extra-special for Bianca, and thank you very much for the DVDs, they are great and Bianca will enjoy them a lot, to the hotel for letting us use their facilities for our experiments it was a beautiful room with a beautiful view and also thank you so much for the beautiful soft toy, hat and pen, to our drivers who collected us and dropped us off again. And thank you to Jody for looking after Caitlyn during this time. I truly hope I didn't forget to include somebody here.

Thank you so very much for this very special day. It was a magical day filled with laughter, giggles, fun, more laughter and a day that we will always remember and that Bianca will talk about for a long time to come. Thank you so much for making this day happen for us! Afterwards I asked Bianca what she thought of today and she said "I loved it".


A fairy tale day...

Today (Saturday) was a lot of fun. Earlier in the week we received tickets through the Child Cancer Foundation (thanks to the Southern Stars Charitable Trust) to go to a theatre performance of The Adventures of the Three Little Pigs.

This time round we thought it would be suitable for Caitlyn too, and so the 4 of us went to the show. When we got there they had some facepainting and so of course Bianca just had to get her face painted. Usually she is a tiger, but today, she chose to be a butterfly.

Caitlyn was a little bit fussy and a couple of times we had to run after her (you don't always realise just how fast 19 month olds can be when they want to), but for most of it was quite fascinated by it all and for a large part of the show sat on my lap and even participated when everybody had to "shout" at the wolf. Bianca simply loved it and she laughed so much that we couldn't help laughing too. Of course it was slightly different to the original version of the Three Little Pigs and in addition to the wolf and the three little pigs it also featured Little Red Riding Hood, the three bears and Goldilocks. Afterwards Bianca kept saying "that wolf was clumsy".

What was also great was that after the show we were able to meet the actors and get their autographs and Bianca managed to get the autographs of the Wolf, Little Red Riding Hood, 2 of the three pigs, 2 of the three bears and a couple more. Bianca really wanted to ask Goldilocks for her autograph too, but unfortunately we didn't have a chance.

Thank you so much to CCF for including us and thank you so much to the Southern Stars Charitable Trust for making this possible for us.

This term at school their theme is bugs and minibeasts including frogs and their lifecycles. So Bianca has been quite fascinated with bugs and finding bugs to put in a container and saying "but I'll put holes in it". So this afternoon she was out in the garden trying to find some sort of bug to put in her container. They must have expected it because there were no bugs to be found. I think I will leave this activity for Terence to do with Bianca... Here Bianca is putting some leaves and flowers inside her container to try and attract some bugs.


The way it works for us

I've had at least 2 people saying that they would like to help by offering stem cells or donate bone marrow for Bianca. That is very nice, thoughtful and we really appreciate offers like these, and tonight I thought I'd write a little bit about Bianca's treatment plan and what is required for Bianca at the moment.

Bianca's treatment consists of chemotherapy. Initially it was quite intense and mostly done in hospital, of course that meant more side effects like low levels and so on which for us resulted in loads of infections and hospital stays and of course the constant isolation that came along with it. She also lost her hair - twice.

Right now she is still getting treatment, but she is on what they call maintenance therapy which for us means daily chemo tablets at home and once a month visiting the hospital for check-ups and hospital chemo treatment, an IVIG (which is a blood product transfusion) and the start of 5 days of steroids. Once every 3 months along with the normal check-up, the chemo that they would inject into her port, the IVIG, the steroids, Bianca would also go to theatre to get a lumbar puncture and chemo injected into her spine.

Along with all of this, Bianca also gets antibiotics 3 times a week and an antiviral 4 times every single day to try and prevent her getting shingles again.

Bianca still has another 10 months and 3 weeks left of treatment and if all goes well we will finish treatment around the 11th of September 2009. I understand that she will continue with the antibiotics for another couple of months after this date and her port will probably stay in until around 6 months after treatment is done. It will also be around this time (I think) that they will do a blood test that will tell us which of Bianca's childhood immunisations she still retained immunity for or whether we will have to do some or all of those immunisations again (of course I really hope we won't have to do them all again).

Right now Bianca is in remission. They usually try and achieve this within the first 5 weeks. However, remission for us means having less than 5% cancer cells left in the body, so it doesn't mean no evidence of disease, it just means that with the maintenance treatment we are hoping to kill of all those last remaining cancer cells.

When we get to that last day of treatment, we won't have any test that will tell us whether the treatment worked 100% or not. It will become a waiting game and once a month (I think for the first year) we'll go into hospital for checkups and thereafter it will change to quarterly and eventually once a year and so on. And I understand this will pretty much be like that until Bianca is much much older. So this is pretty much a lifetime thing for us.

The first year off treatment will be the biggest risk and there will be a 10% - 15% chance of a relapse and only when she reaches 4 / 5 years off treatment will they finally consider her "cured" as her chance of a relapse will be significantly less. Although that is not to say that it won't ever come back or that she cannot develop a different type of cancer.

If there is a relapse, then it would typically depend on when the relapse happened, where it happened and so on and then they will either look at just chemotherapy and in some cases they add radiotherapy and bone marrow transplants might become an option. Of course the ideal is that there will be no relapse and that the current treatment of chemotherapy will be successful as there are so many other risks and side-effects associated with radiotherapy and bone marrow transplants. So if we can avoid this, then that would definitely be our choice.

There are some types of leukemia or other cancers that can only be cured with a bone marrow transplant, but for Bianca's type (Standard risk, Pre-b Acute Lymphoblastic Leukemia), the first option is chemotherapy.

The best way for people to get involved with bone marrow donation is really to contact the local organisation in their area who might be responsible for adding people to the bone marrow register. When people with cancer require bone marrow transplants, they are able to try and find a match on this register (usually when parents or siblings were not a match). Here is a very good and informative site that is relating to how it works in New Zealand, but I am fairly certain that it is relatively similar in other countries too. And here is some info specifically on the New Zealand Bone Marrow Donor Registry.

So whilst you may not currently be able to help Bianca directly by offering to donate bone marrow, you might be able to help others who desperately need a bone marrow donor. And of course by donating blood, platelets and plasma you will also be able to help save lives - to date Bianca has had more than 30 blood product transfusions and without these she really would not have stood a chance.

A fascinating evening

Tonight (Friday night) Christina from Terence's work came to visit and it was so much fun. Of course the kids thought this was just the best and you should have seen them show off.

Christina is also from Canada and she has such a fascinating background. She is trained in archaeology and she is able to identify shells and things like that. When I look at a shell, that's what I see - a shell. She looks at a shell and she sees a star shell or a pipi, a venus shell, a triangle shell, a cockle, scallop shell, some mussel shells (which way back then people used to eat with and sharpen and used as knives) (okay, I knew this was a mussel shell) and even an ostrich foot shell.

Bianca dug up this shell (that I honestly thought was a pretty ugly shell and it looked all broken, but Bianca liked it when we saw it) and Christina immediately said that it consisted of 3 shells stuck to each other. Of course now I am able to see it, but not before.

Bianca was so fascinated to learn the different names of the different shells and the type of animals that might have lived inside them.

Here is an ostrich foot shell:


Great news for Wellington

Today is a good day for Wellington Hospital. The new paediatric oncologists arrived! (News article here). That is such good news for any new families and other families who were sent away for treatment. Of course it would be good if there were no new families, but unfortunately there are always new people joining this "club".

What this means for Wellington now is that they are able to return to a full service, kids won't have to be sent away for treatment anymore (although I'm not sure about bone marrow transplants). I do know that they have some great plans for the unit which will hopefully be put in place in the not so distant future. There really are some great people fighting for and believing in the unit and I am very happy that things can be better in Wellington. It is just unfortunate that it took the resignation of the two previous specialists for the hospital management to actively work on fixing the problems, but that is all done now and it is good to see how very committed they are now. As far as I know the management representative still meets with families on a regular basis and that is so good to include parents in the communication process.

It won't really affect us at this point in time, for now we are still living in Auckland and we are hoping to remain with our current paediatric oncologist who is really brilliant at what he does. We have only around 10 months left of treatment and so it makes sense to try and stay until the end of treatment.

We are quite realistic that it will take the new Wellington specialists a few months to get on top of everything, and so for now for us, it is better to remain with a doctor who currently knows Bianca and her history quite well. Of course we do keep an open mind and if we get to a point where we have to move back to Wellington, then we will do so, knowing now that at least the specialist care would be in place for Bianca. But as always in this journey, we just take each day as it comes, not planning too far in advance, knowing very well how quickly and unexpectedly things can change or move into a different direction than we anticipated.

But we also remain hopeful that things will continue for us as it has been the last couple of months, pretty ordinary, pretty boring, pretty settled. Sometimes we feel a little scared of the unknown, that fear will always be in the back of our minds, but we try very hard to remain positive, to focus on now and not to worry what may or may not lie around the corner.

On a last note, this coming Sunday Bianca will get her Make-a-Wish. More details shortly!!! And Funrazor registrations will open soon, will be looking for lots of sponsors!


Back at school!

This morning really early Bianca came into our room and she had this smile on her face. Terence asked her why she was so happy and she said "because I love school". She just couldn't wait to get back to school. And one day I will tell her "remember when you were 5..." :-). She had a great day at school and was the Star of the Day. On the way home I was trying to teach her our home number and she looked at me and said "that's not my number". I asked her what her number is and she said "0, 0, 2, 2, 1, 1, 9, 9, 0, 0" (so there you have it...). We feel so blessed to have this opportunity for her to go to school and do normal things.

Last week I ventured into the city to catch up with one of my previous bosses. In fact, he was my very first boss shortly after we arrived in New Zealand and I temped at his company for around 6 months. It is a great company and I got along with pretty much everybody there. It was great to catch up with him and get all his news. He's been at this particular company for nearly 40 years (and says that this was his second job) - quite a bit different to how things work nowadays :-).

And of course he is very very proud of the fact that he is now a grandfather and his little granddaughter is the same age as Caitlyn so it was so cool to see how very similar they are in stages and Caitlyn does the same cute things this little girl does. You can just see how very proud he is when he speaks of this little girl and he described just how much fun she is to have around and how he likes to give her 110% of his attention when they are together. I find this totally amazing considering that he has a full time job at this company too and it isn't as if he sits there doing nothing all day long. But then that has always been his personality, even at work, he is never too busy if one of the staff needs to discuss something with him. Afterwards I briefly caught up with two of my friends from the days I worked at this company - it is always great to catch up with people like these!

I cannot believe we are halfway through October already. We are in the last term of the school year, we are sitting with a little more than 10 months left to the last day of treatment, and generally things are going well. Soon registrations for Funrazor will open and I hope you will all sponsor me as I shave my hair off to raise funds for the Child Cancer Foundation in December this year. This is such a good organisation to support and the support they provide families are absolutely wonderful. More details on this fundraiser soon!

There are a number of organistions that I will always be looking to support:
  • The Child Cancer Foundation
  • Camp Quality
  • Make-a-Wish
  • Blood bank (Bianca has had more than 30 blood product transfusions to date and without these kids like Bianca won't stand a chance)
  • Bone Marrow Register (so many kids require a bone marrow transplant as part of their treatment (adults too) and we've been lucky that up to now, we haven't required this, but there are many others who need this).
  • And of course I will always look to support the play specialists at Wellington hospital as they rely on donations to be able to stock up on toys and games for kids in hospital and without Kate and Megan it would have been such a tough time for us (considering we spent 106 days as inpatient in hospital last year.
Of course there are others too, but these are so very relevant to our lives and we have experienced first-hand the wonderful wonderful work these people do with virtually no government funding (if any).


A bittersweet weekend

On Saturday morning really early Bianca and I flew to Wellington to attend a very special birthday party. It was little Kyah's birthday party. Her parents decided to move her birthday celebration forward as they don't know how much longer they have with her. I am so happy for them that they had this opportunity.

Terence planned our whole trip in terms of flight, time to catch the airport bus, the train and so on. And he did a wonderful job as all the timings were spot-on. For some reason Bianca and I got better seats and that was so cool. We even had foot rests!

And at some point we spotted the most beautiful snowcapped mountain.

Wellington had a wonderful sunny day and it was good to catch up with some of our friends again. I have to say it was like catching up with family, but then these people have become our family since we all joined the same "club". I was so pleased for Shanell, Jason, Kaleb and Jordan that Kyah was awake for most of the party, she asked to go outside and even wanted her dad to take her on the bouncy castle. There were face painters, a clown and a tiny little lamb. It was such a wonderful, beautiful and special celebration. A tribute to a wonderful and amazing little girl!!!

Bianca was so excited to see Kate and Jo from Wellington hospital and she was trying to negotiate how to bring them back to Auckland. Can't say I blame her - they were some of our favourites when we were still at Wellington Hospital and I have to say that Kate is probably THE best play specialist in New Zealand. I'm sure the others are very efficient, but Kate certainly is so much fun, knows how to fully interact with the kids.

It was also a bittersweet day and whilst it was great catching up with people we met throughout our journey and meeting people we haven't met before, I just feel so sad and heartbroken that this will most likely be Kyah's last chance to have a birthday. This is when life just feels so very very unfair and I will never understand why little kids have to get cancer. Kyah became our hero and her journey is such an inspiration and it was amazing to see how many people she brought together. You can read this newspaper article about the party. Please could you keep Kyah and her family in your prayers and thoughts! They are such special and amazing people and they certainly do not deserve this challenging time!

Thank you to Catherine and Rebecca who dropped us off at the airport for our flight back and they kept us company for a bit - the flight ended up delayed for an hour (lucky us) and then a hello to Andrew Brown who sat next to us on the plane and kept us company all the way to Auckland. I hope you managed to sort out your connecting flight in LA.

Kyah and family, thank you so much for sharing your journey with us, thank you for sharing this very special celebration with us and know that we are keeping you in our prayers and thoughts. You are so amazing and special to us!


A day of dress ups and freaky fingers

Yesterday we went to a halloween themed morning at the CCF family place. The kids (and Jody) loved the chance to dress up.

Jody made these freaky looking finger biscuits, but they tasted really nice.

And other than that the girls just loved playing with the other kids, eating, discovering the toys, eating, doing some crafts, eating. At one point Bianca pointed to Jody and told one of the girls who helped out "she's a witch, and she's our au pair" (hmmm, somehow I don't think the two concepts belong in the same sentence).

The Child Cancer Foundation is such a great organisation to be part of. They always organise these fun things to let the kids just be normal kids and the chance to socialise with other kids. And of course it gives us parents the chance to meet up with other parents who walk the same road as us.


Have you seen it?

This evening Caitlyn was playing with the phone. She would pick it up, stick it against her ear and then say:
"ha fi wa-wa who" (probably 19 month old conversation for "how are you?"
She would then take it "off" her ear, look at it and say "bye" when we remind her you always say bye at the end of the conversation. Sometimes she will pass it on to somebody else almost as if saying "this is for you".

And then after this it was time for bath and then bed. Of course it was around this time that I needed to make a call. Looked on the desk where I thought we left the handset, but nothing. Looked on top of the DVD player, nothing. Okay, so I do what most people would do and tried ringing the number from my cell and it sounded busy (Panic!) "Terence! I can't find the phone and it sounds as if Caitlyn pressed the talk button and left it somewhere".

We look, but nothing. Not under the couch, not under one of her books and I was about to throw out all the toys from her toybox when Terence tried the conferencing option from the base-station:
"can you hear me?!"
"well, yes, I can hear your voice from the room!"
"how about now?!"
"Still nothing!".
And then something (not sure what) prompted me to put my hand in my jacket pocket -
"never mind, I found it!"

Boy do I feel stupid!!!


A quiet start to the day

This morning Bianca was fairly quiet and today I spent taking her temperature at regular intervals. But I guess it is just the Dex still in her system - it always takes time for the Dex getting out of her system. Thankfully Bianca perked up at some point and she enjoyed playing various games with Jody and Caitlyn.

Recently I wrote how our camera fell into the water at Piha beach. Unfortunately it seems as if there is no way we would be able to get this serviced. We were told by the camera experts that once a camera falls into water (especially sea water) there is no point in trying to fix it. That is so frustrating because we really rely a lot on our camera. So now we'll need to start looking for a new one.

Still school holidays this week and then term 4 next Monday. Can't believe how fast this year is flying...


Yet another day of Dex

Just like last month, the second-to-last day of steroids was pretty full-on. One moment she seemed happy and laughing, the next she was lying on the couch asking for a blanket.

And she was hungry. Oh boy! She ended up eating most of the day finishing off with 3 lunches. No wonder she keeps complaining of a sore tummy, but the hunger is completely beyond her control - that is one of the very common side-effects of the Dex.

After an afternoon nap (usually she wouldn't sleep in the afternoon, but the Dex has the habit of making kids quite tired too and they don't always sleep very well at night), she woke up pretty happy, but no less clingy and suddenly not hungry at all. I had to convince her to eat a little bit because we have to give the Dex. with food and I got her to eat a few bites.

This week was busier than I thought it would be and I can't believe that there is only one more week of school holidays left.


Tummy aches, clinginess... aah that's steroids for you!

Bianca was still a bit on the clingy side today and right now she has a tummy ache - that sometimes happen with the steroids. So we ended up giving a bit of Pamol after phoning the hospital to find out if it was okay. It is not always recommended giving Pamol because it can mask an infection, but she doesn't really seem to have any signs of infection, so probably just the steroids playing up. They did increase the dose a bit, so maybe that is part of it.

Otherwise things are going well, and we can't complain.

We got some update today on Bianca's Make-a-Wish and it seems that it will happen fairly quickly - but a bit more on this a little bit later...


Hello steroids...

Yesterday we started our monthly steroids. Today Bianca was a bit clingy and definitely starting to want to eat only specific things.

Bianca: "I'm hungry"
Lea: "What would you like to eat?"
Bianca: "Maybe a roll with ham"
So I made her a breadroll with ham. Bianca took one bite and then declared "I'm not hungry anymore".

Later she asked for a Subway which I got in time for supper and she finished it. Then she couldn't wait for the time to be up after her chemo this evening (she has to wait 1 hour after chemo before she can eat again) and then she ate some popcorn, pretty much most of the bag and she said: "It's yummy!"

But that's steroids for you!

We had a great day at the CCF activity day which was held at the Family Place. That was so much fun. Jody and Caitlyn came along and Caitlyn had fun looking around, discovering the table with snacks and just trying out some of the toys they have there. It was also really good to catch up with some of the other families.

Bianca also wanted to know how long the school holidays are and then promptly said: "I want to go to school now" - I had to explain that it won't be possible because her teachers are all on holiday too. Now give it a couple more years and I'll have to remind her about this...

Watch the space, it is nearly time for Funrazor registrations again, but more on this a little bit later!