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!