Admitted to hospital

And as things go, plans changed. Last night Bianca started crying when she ate her supper and we discovered a cold sore on her tongue. We phoned the ward and we were told to bring her in on Monday (today). So this morning Sanna, Bianca, Caitlyn and I went to Wellington Children's hospital - Ward 19 Isolation (because of the shingles). Got there and waited for a bit and then we saw the doctor. He thought Bianca looked a bit better and we discussed being off chemo and why her liver is not working 100% at the moment and so on. They wrote a script for a mouth rinse that would numb Bianca's mouth and so would make it easier to eat. And they let us go with a firm reminder that she is still neutropenic. And then wait, wait, wait at the pharmacy.

So Sanna dropped me off at work and I managed to get a couple of hours in before Terence asked that I call him "we need to take Bianca back to hospital, they reviewed her case and decided she would have to be admitted for at least 5 days for IV meds". Okay, so then we left in a hurry, got home and had to pack.

Because it is isolation, they don't like to share toys from the ward due to risk of exposure to other children, so that means we have to pack enough things for Bianca to be entertained for the 5 days and of course enough clothes, and so on. If somebody walked into our house, they would have thought we were packing for holiday - if only...

But Bianca was pretty excited at the prospect of staying at hospital. She even put the skin numbing cream and dressing on herself and it is a bit sad that at 4 years old she is so familiar with these things, but in another way, it does feel comforting that she feels so comfortable at the hospital. It would have made it so much harder if she was scared of going or hated being there. We put Emla cream on the spot where they will be accessing her port sitting just underneath the skin. This is like having a permanent spot for drawing blood, attaching an IV line and so on. The cream takes about an hour to work and then it isn't sore when they put the needle in.

So here is Bianca and Terence's "home" for at least the next 5 days - Ward 19, Isolation room 5!

Bianca got a lesson in taking a pulse, here she is trying to listen if she can hear anything:

No, nothing! So time for the next part of the lesson:

And of course we don't go without our courage beads! We participate in the Beads of Courage programme and basically kids get a bead for every procedure, stay in hospital, port access, finger pricks, injections, special recognition, day of chemo and so on. If you ask Bianca why she gets all her beads, she will say "because I am so very brave".

Our amazing 4 year old, she is indeed very brave!


So not just bruises...

So you think bruises are just bruises? I certainly thought so before. But now I know that a bruise could be because of a bump, or because of low platelets, recently with Bianca's shingles I also learned that a bacterial infection could present itself looking like bruises and now also know that when your liver doesn't work 100% it could also look like a bunch of bruises. Still confusing though, because to me they still look just like bruises.

So during Bianca's brief stay in hospital she didn't need platelets at all. She is still neutropenic which basically means that Bianca's body doesn't have the ability to fight infections very well and so she is at high risk of picking up even the slightest cold. So right now we need to avoid other people. I'm a bit disappointed with that, because it is not fun being stuck at home.

Bianca's liver doesn't work 100% at the moment. We thought perhaps she looked a little bit pale, but of course at the hospital under the bright white lights she apparently looked a bit yellow. The doctor indicated this is because she is not over her shingles as yet and it is still lurking in her system. So verdict: "off chemo for the next 2 weeks and back on aciclovir". Because apparently shingles and chemotherapy don't mix very well and can affect the liver. Never a dull moment...

Bianca really enjoyed the stay. She was extremely brave with her finger prick. But then they also had to draw blood from her hand and before the time prepared several spots on her hands and arms in case they had difficulty with one spot. For this they put the skin numbing cream on with a dressing and then when it was ready was able to draw blood. By that time Bianca was asleep and so she wasn't even aware of them drawing blood from her hand. But this morning she screamed like crazy when Terence had to try and remove the dressing from her hands and arms.

Bianca was discharged early this afternoon and Terence had to drop Bianca off here before getting the medicines from the pharmacy because going to the shopping center is a big no-no for Bianca at the moment. Until the liver function is back to normal, no paracetamol because apparently it is not very good for person's liver. And no chemo for the next two weeks.

We are due back in on Wednesday for a checkup.


Bruises, bruises, bruises

Bruises, bruises, bruises. Today I counted around 18 or 19 bruises on Bianca's legs and arms. Bianca is due in on Monday to check her blood levels to see if they have gone up sufficiently to start chemo again. So we decided to call the hospital to check if it would be better to check it out tonight rather than wait until Monday, just in case Bianca suddenly needs platelets. So they left around 19:30 tonight.

Terence then phoned and said that the test came back a bit too low and she will need a further blood test, but they cannot take it from her port it had to be taken from her hand and arm as I understand (not sure what they call this test), so they will stay the night and then we'll see when the results come back.

As far as I know Bianca is still neutropenic meaning her neutrophils are still too low and we should still avoid other people as she is at high risk of picking something up. Until they pick up sufficiently she will be off chemo, and whilst the thought of being off chemo does feel a bit scary (because treatment feels "safe"), we are taking advantage of not having to worry about what time Bianca eats and so on, so we are just taking it pretty easy in that respect.


Not so straightforward

Today felt pretty difficult and challenging.

Bianca felt a bit tired, but overall was quite happy. I guess from my side I didn't really expect her to become neutropenic again now that she has reached maintenance even though I know that with her medicines it is still very much a possibility. But I guess in a way it is your heart wanting one thing and your mind telling you another. So it was just another harsh reminder that this road is unexpected and isolated. So now we are back to isolating Bianca at home and that means possibly no ballet on Monday, no play dates, no going along to the shops and certainly if she was at school already that would have meant taking time off school. It is a pity though because with our current weather we do try and maximise Bianca's chances of being out and about, soon it will be winter where we will have to be extra extra careful as so many people usually get sick during winter.

Today I also felt a bit as if I was pushed with my back against a brick wall and my mind racing trying to find a "way out" and then realising that I am stuck. Days like today make me wish things were just a little bit simpler, a little bit easier and perhaps not so complicated.

Let's just say that because of specific actions we have not been able to secure an au pair for when Sanna leaves and that because of this I now might very possibly lose my job if I am unable to come up with other child care options.


Unexpected blood test results

Monday morning Bianca woke up pretty grumpy. And I thought "oh dear, here we go..." so we sat on the couch together for a bit until she felt happier.

Caitlyn's favourite past time, pressing buttons...

And the other favourite past time, eating. Anybody for a full body hug?

Later in the day Bianca saw Stella outside and she and Stella had lots of fun. It felt so good seeing Bianca so happy, having fun. Yesterday Terence took the girls to Staglands and he invited Stella and her mom Jenny to come along too. The girls really enjoyed it and they fed bunnies and ducks (and a beautiful swan) and had a pony ride. It is pretty cool that they live right next door.

Caitlyn had some fun as well:

The two girls loved feeding the ducks and swan:

And who can resist a cute bunny?

The highlight of the day:

Tonight Terence took Bianca to the hospital for a blood test. She has a number of bruises on her legs and arms and we just wanted to check it out. Of course Bianca just absolutely loves visiting the hospital and we really like the staff there. They are absolutely great with Bianca. I don't think I would have coped if she hated going.

So they waited a little bit and then came home with an instruction to keep an eye on the bruises and that they would phone us with the results. Pretty much as soon as they came the phone rang:
  • Haemoglobin - 97
  • Platelets - 57
  • Neutrophils - 0.41
Oh dear - she is neutropenic! So now we'll have to wait and see what they say tomorrow morning whether they want to see her again, another blood test, stop chemo or whatever. I suspect at the very least they will lower her dose or even stop her chemo alltogether for a little bit to try and get those neutrophils up again. But that's one of the main side-effects of the chemo Bianca gets every single night. It does tend to lower neutrophils and that is why they often have to adjust the dosage.

So isolation at home yet again. I'm not sure how long she's been neutropenic because last time we checked she was sitting at 1.6, so of course we haven't been isolating her and right now we are just hoping she wasn't exposed to something horrible. So for the time being she'll have to stay away from other people.


What a weekend!

We had a wonderful weekend!

On Friday morning Bianca had a play date with her friend Amy. We met up with Bonnie, David, Amy and her two brothers at Aotea Lagoon. The kids fed the ducks, ate some picnic food and played. Bianca and Amy just had the best time ever, it really made Bianca's day seeing her friend again after such a long time.

On Saturday morning Bianca and her dad went to the Porirua New World which is where we pretty much always shop. We like this shop because their hours are convenient and the service is great! There is a lady there (sorry I don't have her name) and whenever she sees us she always asks how we are doing. So she gave the girls each an Easter egg as a present. Wow, thank you so much! That was totally unexpected and very much appreciated!

Later in the day I had to go to the shops by myself as I had to give the Easter Bunny a hand with getting some Easter eggs for the kids. Let me tell you, there is nothing like last minute and if it wasn't for the last minute nothing would ever get done! The shops were so so busy and I really struggled to find parking. In a way it was a good thing to go because K-Mart had 20% off all their Easter eggs so I was able to buy a whole lot at much cheaper.

Last night Terence went to the Rock2Wgtn concert here in Wellington and there were performances by Kiss, Alice Cooper and Lordi. Not really my taste, so Terence went with somebody from his work. Thank you very very much to the performers, promoters and The Child Cancer Foundation who made it possible for us to have the tickets. Terence had the best time ever and he thoroughly enjoyed it!

This morning at around 6am I ran around the back yard to help the Easter Bunny hide some Easter eggs. After Bianca woke up the Easter Bunny rang the doorbell. Well, it must have been him because he left a note and a bag to collect eggs. So Bianca then got the important job of hunting for eggs. Well, I never saw her dress herself so quick and her whole face just lit up. She had a great time. We made sure she had her breakfast first and kept some chocolate eggs for tomorrow. Of course this was pretty much the first time Caitlyn had chocolate and later in the day I found her in the dining room area where she grabbed a chocolate egg from the table and ate most of that egg. The little rascal! She just grinned.

This afternoon Terence and Bianca went to the beach and they had so much fun digging in the sand, running into the water and exploring the rock pools. They even saw some live creatures in some of the rock pools.

Tonight I created two new groups on Facebook. The one is called Brave kids fighting cancer. This is pretty much for anybody to join regardless of where they stay. The other is called Kids with cancer in New Zealand and this one is specifically aimed at people who belong to the New Zealand network on Facebook. So I'll see if these two groups take off. I hope so, because it might be nice to have a forum where people can ask questions on how other people dealt with specific situations and to share photos and links. And of course if there are specific events or initiatives, this will be a great way to share with others.


Thank you for good moods!

I am so so glad that we are done with the steroids for this month. Bianca was in such a good mood today. None of the other chemo and regular medicines affect Bianca too much mood-wise (of course with each one there are some side-effects to keep in mind), but the steroids... well that's a different story all-together. So I am really pleased it is only 5 days each month.

This morning Bianca drew a picture and then took her one book titled "I love you all the time" and the then looked at the words and wrote on her sheet of paper "I love you all the time". She loves writing and she is pretty good at forming her letters.

Bianca is so excited because tomorrow she gets to play with one of her best friends, Amy. She hasn't seen Amy since the last visit to Polyhigh (the daycare center Bianca used to go to). Bianca keeps talking about Amy and writing Amy's name and I think she's really missing her friend. But tomorrow we will meet Amy and her family at Aotea Lagoon where they will play and feed the ducks. I haven't yet decided if we will take Caitlyn along or not. I guess we will see if she is tired or not when it is time to leave. Amy might also be doing ballet next term and that would just be so exciting for Bianca to be able to do ballet with her friend.

Today was Sanna's birthday (Happy Birthday Sanna). She is on leave at the moment so we ended up just giving her some money so she could do something special on her trip. Sanna, we're waiting for those photos! The kids do miss their "like big sister" a lot and when I asked Bianca who will be coming to visit (meaning the Easter Bunny), she asked "Is it Sanna?"

Yesterday I made a new friend on Facebook. It was pretty much a coincidence, but it turned out that this lady lives really close to us and she has been following our blog. So that is pretty cool. She volunteered to let Bianca spend some time with their one dog and that would be so exciting for Bianca. Bianca just loves animals.

Speaking of animals - Bianca has been asking for a kitten. In fact she drew me a picture of the kitten she would love to have. She already told me that she would be very very gentle with the kitten and not like George on The Go Show (George is a short cartoon story on The Go Show where he does something and then they discuss the things he did and discuss if there are better ways to handle something). Unfortunately Bianca is not allowed a kitten at the moment. Our rental agreement does not allow us to have a kitten and kids with leukemia are not allowed kittens either (I did try my luck before trying to get a cat because we had mice and Doctor Anne very definitely said no). So, we'll just have to wait until the right time.

I feel quite sad that yet another child passed away because of cancer. Little Kimberley Fayette passed away yesterday. She was diagnosed with AML (a form of leukemia) in March 2005 at the age of 6.5 months. My heart really goes out to her family and I pray that they will find comfort during this very difficult time. I find so many different blogs and journals and even though I will probably never meet most of them, you do get to know them quite well. So it really breaks my heart when I read updates like these, knowing how very long and hard this journey must have been for them.


Last day of steroids for this month...

Last day of steroids for this month. Until next month...

Today was a better day and Bianca was much happier, although a bit more clingy. Bianca was also more obsessed with food today.

Bianca is totally hooked. Her favourite shows at the moment are Speedy Gonzales and then Donald Duck in a cartoon with chipmunks called "Three for Breakfast" and she kept asking to watch it over and over again and each time she would just giggle away. It is so funny!

I'm staying at home this week as Sanna is on leave and Terence needs to be at work and it is great spending some extra time with the girls. Although they do keep me really really busy.

Bianca is getting so excited about the Easter Bunny coming for a visit soon. We'll have to get her to find some easter eggs for her baby sister.

On the 8th of April we have a meeting with the school to discuss Bianca's specific needs. I'm so glad things are moving along. After this meeting we will start setting up visits to the pre-school for Bianca. This is in preparation for when Bianca starting pre-school beginning May. And then in the third term Bianca will start junior school. So soon we will go shopping for uniform. For Bianca the most exciting part will be choosing a lunch box.

And then in the meantime I am anxiously waiting for some more applications for a new au pair. Sanna will be leaving end of April and we will miss her just so much. She very much became part of our family.


Dexamethasone... what more can I say?

Yesterday was an interesting day. The Dex hit us pretty much as soon as we all got up. Bianca was emotional and sad the whole day, and it did not help that she bumped her foot as she was playing with her dad and then not long after that fell off his lap as they sat on a chair.

We ended up having lunch at a restaurant in the city where they make curly fries - Bianca calls them "piggy fries", but she ended up not eating much at all. Caitlyn on the other hand fully made up for that...

And then just to brighten your day:

For the first time ever we had somebody obviously staring at Bianca. It started feeling a bit uncomfortable and I felt tempted at one point just to ask this lady if there was a problem or if she had any questions.

On the way back we had to go past the shops and Bianca reminded her dad to get her a "stick chocolate bar". This time round she has cravings for Kit Kat chocolate bars. Bianca fell asleep when we were waiting at the shops and when she eventually woke up she tearfully asked if her dad remembered to buy her the "stick bar chocolate".

Then out of desperation Terence put on some classic cartoons - Speedy Gonzales, Tom and Jerry, Pluto and Donald Duck. Bianca just giggled and giggled.

And then it was bedtime. It's been a long time since Bianca cried so much and for so long and it turned out that her foot was still pretty sore. She settled down after we gave some pain meds.

Thank goodness tomorrow is the last day of the Dex for this month.

Today was a better day. We even went to ballet this afternoon. Bianca enjoyed it so much. Even though Bianca still had the shortest hair in the class, she now has a full head of hair. The day that it is long enough, Bianca and I are shopping for hair clips.


Today was a very very exciting day for us. Bianca and I were interviewed by The Breeze Easy Morning Wake up show with Steve and Stephanie. I often listen to this show so I was so excited to be able to meet them and see how it works behind the scenes. It was an informal setup and when we arrived we could pretty much be in the studio during the time that we were there. It was so cool watching them deliver the traffic report and inviting callers to phone in for a competition.

Here Bianca is sitting in Stephanie's chair.

They have this spinning wheel in the one corner that they use for competitions and I honestly thought that it was a sound effect they usually play, I did not think that they would have a real spinning wheel there. And so Bianca had a chance to spin the wheel and Stephanie let her win a prize. Bianca got the nicest story book for kids. Afterwards I realised I forgot to ask them to sign the inside front cover, so I will have to ask them to write Bianca a little note on a small piece of paper that I can stick inside the book.

And then we had our interview and apart from one or two shy moments, Bianca did pretty well.

Oh wow, it was so great. We had lots and lots of fun and Steve and Stephanie are absolutely fantastic!

So then it was off to the hospital and on the way I realised that with all the excitement I forgot to put the skin numbing cream (Emla cream) on so that they can access Bianca's port. So when we got there, we had to wait a whole hour before they could access her port. Today I was also reminded why we don't usually take Caitlyn with us to the hospital. That would be because I had to keep running after her. I don't have to ever go to gym, we have our very own little gym right here at home...

Bianca got her morning dose of Dexamethasone. Today is day 1 of 5 for this month's Dexamethasone. I cannot believe that we are entering the third month of maintenance already.

After an hour they accessed Bianca's port. Bianca got to play with the modified doll that Chris and Kate made to let the children draw the doll's "blood". That was so cool and afterwards Bianca said "I was being a nurse".

They administered the Vincristine which is a chemo through Bianca's port and then it was time to go home via the pharmacy to pick up Bianca's oral chemo. Apart from the daily Mercaptopurine she will also be getting her weekly oral Methotrexate (chemo) tonight. So pretty much business as usual.


Daddy's day with the girls

Today Daddy got to spend the day with his two most favourite girls in the whole world. Sanna is on leave and so Terence was off as I had to be at work. They took the train to the one shopping center and bought some groceries before coming back home. Terence realised that Caitlyn definitely does not like going on the train. It is not so much the train, but a 1 year old does not like being strapped into her pram when there are so many things to see and play with on a train.

Tonight Bianca and Terence are baking cup cakes to leave for the fairies. Hmm, I wonder what they might bring to say thank you...

Tomorrow will be a bit of a busy and interesting day. Bianca and I will have a radio interview with The Breeze. If you go into their website you need to select "Wellington" and you will be able to see the frequency and I see they have an option to listen online. So this will be very exciting.

Then after that Bianca has her hospital appointment. I expect it will probably take a while. It is Bianca's monthly appointment, so she will get her monthly Vincristine through her port, she will start the Dexamethasone for 5 days of this month and of course her usual Mercaptopurine in the evenings and her weekly Methotrexate. We will probably wait for blood test results as the pharmacy in the city is the best to get her chemo from and we will be right there anyway. Bianca will also be seen by her doctor.

So it will be quite interesting to see how all of this goes with Caitlyn. I have a feeling she will be quite fussy because she is bound to miss her morning sleep. But we don't have much of a choice as Terence needs to be at work tomorrow.
Tonight Bianca decided that she wanted to pretend doing a TV interview with Terence and so she pretended her skipping rope was a microphone that had to go underneath his shirt and stuck out at the top and the other end had to be at the back. And then she asked him a couple of questions before saying "stop". Brendon and Steve, I think you have competition!!!


Hitting the bugs, just in case

Bianca was in the car with Sanna
Suddenly Bianca said "I have bugs in my tummy"
Sanna: "but you don't have a tummy bug"
Bianca: "well, actually I have bugs in my whole body"
Bianca made a fist and "hit" her tummy.
Sanna: "Why are you doing that?"
Bianca: "I'm hitting the bugs"
Sanna: "You don't have to do that, you get special medicine for the bugs"
Bianca: "I'll do it just in case"

Sometimes I do wonder what goes through Bianca's mind. She knows she is sick. It would be unfair if we did not tell her that. But I do wonder when she notices other children with their seemingly carefree childhood. She is only 4 but had to learn to take her medicines every single day, that we need to set the alarm for 2 hours after supper and that during that time she cannot eat anything, she had to learn to swallow tablets, we have to remind her not to give kisses straight after getting her chemo tablets, she knows that going out somewhere depends on her levels and that if they are low we won't be going anywhere, she knows to avoid other kids when they have runny noses or coughs and she knows it will be a long time still before she is able to tie up her hair again. Not many other 4 year olds will ask if they are well enough to go to the shop with Mommy and then when we are in the car will ask "do I have to stay in the car?" and then when I say that it is okay to come with me, her little face lights up with excitement.

Bianca is one tough 4 year old, she doesn't ever let this get her down. She just keeps going, smiling and enjoying every day no matter what it brings.

I found a link to a very special song that pretty much describes the journey that kids like Bianca walk. Click here to listen to it.

We will never know why we were chosen to walk this road, maybe because we were strong enough, or perhaps weren't strong enough, but had to learn to become strong enough, or perhaps we had to learn to slow down and appreciate the things we tend to take for granted. It doesn't matter why we were chosen to walk this road. We feel blessed that Bianca is able to be an inspiration to others, we feel blessed that we are able to learn from her and we feel blessed that we have this opportunity to make a difference.

This week is the annual appeal for The Child Cancer Foundation. This is a much-needed fundraising for them and without these funds they won't be able to help kids like Bianca fight cancer. They do such an important job and yet get no funding. They walk this road every single day with us and will still long after we completed treatment, they are our voice when we have concerns, they are there for us if we want to talk (or not), if we are looking for information or advice, or need help to meet with a prospective school to work on a strategy, they help with meal vouchers and petrol vouchers, opportunities for us to meet other parents, or make it possible for us to do normal things that would be impossible to afford or make happen because of circumstances.

Before Bianca got sick I never realised that very few things are as lonely and isolated as cancer, I never realised the effect childhood cancer can have on a family unit, I never realised how very long the treatment can be and without the Child Cancer Foundation this would have been much much harder to deal with. So please look out for the street collectors or purchase one of the specially designed t-shirts at the JK Kids Stores or buy a special bead on a bracelet to support this very important organisation.


A tv appearance at the start of the CCF appeal week!

What a day!

This morning we went to the TVNZ studios in Avalon (Lower Hutt). We got there and had to go to the make-up room. Bianca felt all important when they put lip gloss on her lips.

Then we went to the Green Room where we had to wait until it was time to go through. It was so exciting meeting all these well-known people. Steve Price is just such a down-to-earth person. He is a rugby league player and is also the ambassador for the Child Cancer Foundation. It was so cool meeting him. And of course it was so great meeting the presenters from Good Morning. We briefly saw Sarah Bradley. We also met Steve Gray and Brendon Pongia (they were the presenters interviewing us). They are great fun and Bianca loved the attention. Steve does movie reviews for Good Morning and at one point he asked Bianca what her favourite show is and she answered "Dora".

Then we had to go through for the interview. It is so amazing to see the setup and also the way they work. Good Morning is a live broadcast and things happen pretty fast. Our part of the interview was pretty quick and at the end of it Brendon asked Bianca if she would like to say hello to anybody and she said "hello Daddy" and then also added "hello Sanna".

It was so cool. What a great experience.

This was the start of the annual appeal for The Child Cancer Foundation. Bianca wore a special t-shirt which is being sponsored by JK Kids Gear and is available at JK Kids stores. For every t-shirt sold The Child Cancer Foundation gets $10. Look out for the street collectors this week, they will also sell a special blue bead on a bracelet that represents the special bravery beads that the cancer kids get for every procedure that they go through. This bead is also available at places like Mad Butcher and a few other outlets. So lots happening this week. Without this much-needed fundraising the Child Cancer Foundation would not be able to give us the support that they do and without the support they give us as a family it will be so incredibly hard to walk this journey. So this is your chance to help children like Bianca.

Here you can see the t-shirt that Bianca was wearing, it is so cute. Look out for it at JK Kids Stores - remember for every t-shirt sold, CCF gets $10! Bianca was also wearing her own beads and then the one around her wrist is an example of the one that will be sold this week.

This is an example of the bead that will also be on sale - it represents the bravery beads the kids get during their treatment.

It was so cool to meet Steve Price.

After our television appearance we went back home to drop Bianca off at home and Terence and I went to work. I had a busy time at work and at around 4pm got a call from Jo from the hospital. She left a message on my cell phone asking if we could please bring Bianca along for a finger prick. At the beginning of the second month of Maintenance they increased Bianca's dosage of daily chemo and then when she got shingles, they stopped her chemo until last week. They then instructed us to carry on as before on the same dosage. So I guess they should have perhaps checked her levels before starting chemo again to see if it was still necessary to be on the same dosage. So hopefully tomorrow we will get the results and with luck her levels haven't gone down too much.

Bianca felt pretty good today and so she managed to go to ballet. I am so pleased about that.

All in all a very exciting day and we managed to participate in the annual appeal!


Anything is possible!

Yesterday I couldn't help laughing. Bianca put some of her own make-up on her face and she then took her pair of koala ears and she put it on her head and then said "guess what I am"
So I then asked "Are you a giraffe?"
She shook her head.
"A monkey?"
She shook her head.
"Oh I know, I know, you are a koala bear"
She shook her head once more and then proudly declared "I'm a funk".
"Sorry a what?"
"I'm a funk".
It then dawned on me and I said "oh you mean you are a punk?"
"No, I'm a funk"

I could not help laughing.

Yesterday we met our neighbours. So they invited us to their house for a barbeque. There were some other people as well and I think it was their house warming party. What a nice time we had! They are really nice. Jenny and Brian have the cutest little girl Stella who is 2 years old and they are expecting another baby in June. Bianca had great time playing with Stella and the other kids. Caitlyn happily toddled around and she loved playing on the little miniature piano. We'll definitely be inviting Stella for some play dates.

Tomorrow morning (Monday 10 March) Bianca and I will have a busy day to start off with. We will (if all goes to plan) appear on the Good Morning show on TV1. We will probably be on around 11:20am (somewhere between 11am and 11:30 - I would think). I'm a bit nervous as this is a live broadcast, but I am also really excited. I hope Bianca won't be too shy!

It seems that the shingle rash is still mostly on the one side of Bianca's chin. And it seems to really irritate her quite a bit. So we have to put calemine lotion on several times a day. I really can't wait until the rash is totally gone.

Tonight Bianca is also pretty grumpy. I think she is probably a bit tired, and of course it didn't help that I had to remove a plaster from the one side of her face...

Bianca has quite a bit of hair at the moment. It feels so exciting that it is busy growing back. Although I must say I thought Bianca looked really beautiful even though she had no hair for a very long time. One thing I am so pleased about is that we have never had to worry about insensitive people or people staring and pointing. Most people seem to treat us as normal, as if nothing was wrong. Just once, when Bianca met a little boy in the park who said "you have no hair" and Bianca looked at him and said "well, it is busy growing back" and she then turned her back on him and carried on playing.

So now we are finally at the point where we can actually wash her hair. It does seem to be a bit darker than before, so we will have to see.

Of course with Bianca having no hair, I guess it is easier for people to understand our situation a bit better and as soon as she has proper hair again, most people won't realise she is still fighting leukemia and will still fight it until September 2009. One thing about leukemia is that it takes so very long, not many people realise just how long the full treatment process really is. And even then we won't ever really be able to put the experience behind us, it will remain part of us as we go forward. With leukemia there is no definitive test that will confirm that the treatment is a complete success or not. We will just have to live day by day until she reached 4 or 5 years off treatment and only then will they consider her "cured" but only because her chance of a relapse then will be much much less than before.

But it is all good and in the end this is a very good learning opportunity designed to make us stronger. And I know that one day we can all look back and say "if we could do this, then anything is possible!"


A present from the fairies

Yesterday Bianca baked Brownies with Sanna. She wanted to leave it for the Fairies. And so she wrote a little note for the Fairies "Help yourselves" and then left some Brownies on a plate next to her bed. And somewhere in the night the Fairies came and enjoyed the Brownies. This morning when she woke up she was so excited, because they left her a Princess Torch. And she said "Look what I got" and I asked "Where did you get it?" and she said "The Fairies left it for me, and look they ate the Brownies". I then said "Oh I want a torch too" and she said "well, you didn't leave anything for the Fairies". Bianca saw a new magazine series called Felicity Wishes that is a magazine with activities and comes with stuff. The first one comes with a fairy doll and outfit and as you go on collecting the series there are all sorts of outfits to collect for the doll. I think she had her heart set on getting this from the fairies, so I'll need to go and see if I can find it so the Fairies have something to leave next time.

Tomorrow the Aciclovir is finished. This is the anti-viral that Bianca has been getting for the shingles. The rash is mostly gone, but very vaguely still there. And of course it is still painful and itchy around bed time. Of course because of this Bianca hasn't been able to go to ballet, which is quite disappointing as she's pretty much only had 1 lesson before she got shingles.

It's been great being back at work. I had a bit of a slow start, but things started picking up. Last week when I started I did wonder if I made the right decision. I was a bit early on this day and so as I sat there on the bench waiting I saw all the people rushing past and I realised how out of place I felt, it's been so so long since I worked. And throughout this journey there are some times when it feels a bit as if you are standing on the "outside looking in", as if things happen around you, but you are not really part of it. But here I am and all settled into the new environment. This is an important step as we walk our journey so that I am able to stay strong and stay focused. And of course this also gives Bianca a chance to gain confidence again and to feel comfortable that she doesn't always need me around.

This weekend we don't have any definite plans and we will be just taking things as they come along and most of all just enjoy spending time together.


One little step at a time

We are back on track with our chemo schedule and even though it means more effort and it could cause side-effects, it does feel safe being back on chemo. Being on chemo means that we can fight those cancer cells.

Today marks 9 months since Bianca was diagnosed. 18 More months to go. It feels unreal and in a way it feels as if we have always walked this journey. The time before Bianca became sick feels as if it was part of a different lifetime. Life has very much become "routine". Especially in the evenings. Give Bianca supper around 4pm or 5pm. Set the alarm. Then 2 hours later - "beep, beep, beep". "Okay Bianca, medicine time!", then set the clock for 1 more hour and then bed time. And at the moment she gets other meds 4 times a day as well. It will feel so strange one day when we won't have to give medicines anymore, I'm sure it will feel as if something is missing!

The shingles still bothers Bianca around bedtime - I can't wait until it is finally gone. At the moment we have to give Nurofen for pain and Calemine Lotion for the itchiness. It feels quite distressing when it gets around evening and she starts crying because she is sore. And then the sigh of relief when the pain meds kick in. It is quite weird, because this is by far not the worst or most distressing thing that has happened to date. But we will get through this, just one little step at a time...

So here is a link for you to go and have a look at. Bianca participated in the one initiative, the Hyundai Wheels of Courage. She put her hand print on the car. These two auctions are for the Child Cancer Foundation, so please pass it on to anybody who might be interested.

Now don't forget that next week is the Child Cancer Appeal week.


Back on daily oral chemo

Last night Bianca was fussy again. The dreaded shingles! The rash is definitely busy disappearing, but I think it gets quite itchy or sore around bedtime. I don't think Bianca sleeps very well at the moment and that then leads to her being quite tired during the day. So a bad cycle that we are busy getting into that may end up being hard to break. I truly hope and pray that we never have to get shingles again!

We thought she would be up for ballet today, she certainly seemed happy and good this morning. Later this afternoon, she became quite sad and tired and Sanna realised Bianca wasn't really up for ballet today. In a way a good thing because it was pretty cold, windy and rainy today.

Tonight (after a 10 day break) we are back on our daily chemo routine. So we are now back at timing Bianca after supper as we need to give it after supper on an empty stomach. It is not so much the empty stomach, but the mercaptopurine cannot be given with anything remotely resembling dairy or citrus, so if we give it on an empty stomach, then we make sure of this.

I read the latest update on Lucy Laws and things are certainly looking so much better than initially. Proof that miracles do happen!


Party time!!!

Last night was yet another difficult night. Bianca didn't want to sleep. She "slept" in her own room, but a number of times we had to go to her room reminding her that it was sleep time. So today we really feel tired.

Today we had Caitlyn's first birthday party. Her actual birthday was last week, but then Bianca was in hospital, so we decided to wait until today for the party. Bianca would have been so disappointed if she did not have the chance to be at her baby sister's birthday party.

It was really just us at the party, but still, we wanted to do something special for Caitlyn. Bianca and Terence baked a cake and then I made an attempt to decorate it in the shape of a teddy bear.

Initially Caitlyn didn't want the party hat on her head, but soon forgot about it.

Big sister Bianca had to blow out the candle for Caitlyn to show her how it is done and Caitlyn had fun "exploring" her cake.

Then it was present time! Bianca and I helped Caitlyn to open her presents. Caitlyn hasn't yet learned how to open presents, but I'm pretty sure that by Christmas she will know exactly what to do.
And I'm very happy that we had the chance to share this with Sanna too. When Sanna came Caitlyn was 7 months old. Sanna pretty much experienced most of all the milestones and achievements - she was there when Caitlyn started sitting properly, crawled properly, started standing up, learned to wave, blow kisses and clap hands. She was there when Caitlyn started standing, started walking and now with Caitlyn's very first birthday party.

On Monday we start oral chemo again. I'm not yet sure whether this time that we were off oral chemo is seen as a delay or if we just start again at the day we would have been if we continued with chemo. If this is a delay, then it might affect our end of treatment date. I hope it doesn't.

The rash is significantly better (thank goodness), and as soon as it is completely gone, then we will take Bianca back to ballet. I can hardly wait!