Girl Power

Last night was another restless night. We decided that it would be best if Bianca slept in our bed because we can't really fit two people into Bianca's bed. So Bianca and I slept on my bed and Terence slept in Bianca's bed. She didn't sleep very well at all. I think the rash is really bothering her. The thing with shingles is that it follows a nerve path, so it can get quite sore. Every few minutes she would kick me, or she would turn, or she would push me away. Neither of us got much sleep.

During the day Bianca was pretty miserable. She wasn't in the mood to eat, talk or do anything and so she ended up sleeping most of the morning. At one point Sanna was concerned that Bianca might be getting a high temperature, but it turned out to be a false alarm! It was only after Bianca woke up from her sleep that she finally cheered up.

Today Bianca said "I don't want to get married". Sanna asked "why is that?" And Bianca replied "because of girl power"!

Caitlyn walks quite a bit now that she has figured out how. It is just so very cute. She has also now discovered her tongue and would "chew" on it and each time Sanna would nearly get a heart attack thinking that Caitlyn put something in her mouth.

This past week has been quite exciting for me with my new job. I started on Tuesday in a contract position which will be for 6 months and is a project coordinator position. I work at one of the banks in the city. I am so pleased about this opportunity and this will certainly help going forward. I enjoy contracting because it does give me a bit more flexibility with Bianca. And of course this position will allow me plenty of opportunity to learn lots of new things. The people in my team are all really really nice and they made me feel so welcome. There is also another lady who started on Monday so we sort of stuck up a bit of a friendship.

I hope tonight will be a much better night and that the rash will disappear so that my little girl can start feeling a bit better.

A rough night

Last night was a very rough night. Caitlyn pretty much slept through, but Bianca was restless and fussy and I think the rash was either itchy or a bit sore so she kept insisting that one of us sleep next to her. So we were very tired this morning. When I left for work this morning, the "what if's?" kept me occupied all the way to the city. I worried that Bianca would have to be admitted again and with me just starting this new job...

Terence, Sanna, Bianca and Caitlyn all went to the hospital for Bianca's appointment. They are quite happy with the way the rash is going and feel confident that it is getting better. Of course to me it still looks pretty much the same. Thereafter Sanna dropped Terence off at work and then brought the kids home.

I was worried that it might become a problem with Bianca being off chemo still, but they assured us that she still has a long time on chemo to help fight the leukemia and that we shouldn't feel worried.

This weekend we want to have Caitlyn's birthday party. I'm just crossing fingers that Bianca doesn't have to be admitted to hospital again for whatever reason. It will just be us, but Caitlyn deserves to have a little party to celebrate turning 1 and we really want to include Bianca as well.

I survived my second day at work. It feels quite good to be amongst people again. Since Bianca became sick my interaction with people has been limited to seeing people at the hospital and people in passing at the shops (I can only just imagine what the isolation must feel like for Bianca). And of course the extra money will come in handy even though most of my money will be spent on childcare. But at the same time, it does feel like I'm stepping out of my comfort zone, it does feel like I'm swimming in unknown waters. I've come to know this "game" as highly unpredictable and so I am back to just taking one step at a time like always. And certainly whilst Maintenance has brought with it some sense of normality, I also realise life has become more complicated for us and will be so for many years to come.

But at the end of the day we are blessed that we have each other and together we can walk this road no matter what comes our way!

Caitlyn is off!

I think it is safe to say that Caitlyn is pretty much now walking. She'll walk a number of steps, then sit down, then get up and walk a few more steps. It is so cute. I feel so happy that even through all of what's happened, we still managed to share and enjoy all Caitlyn's little milestones.

Today Bianca fell asleep under her bed when she was resting and she was so grumpy when Sanna had to wake her up. But for most of it Bianca had great fun and Sanna took the kids to the park today.

Bianca is still off chemo for the time being, I think they are waiting for the rash to disappear. Either way Bianca has a hospital appointment tomorrow morning and we will then see what they say. So Terence will have to take Bianca as I will need to be at work.

I had my first work day today and now at the end of it I have a bit of a headache. I am still trying to get my head around all the jargon and new work and stuff. But it felt good and exciting although I certainly did miss my girls terribly!

Helping children like Bianca

The New Zealand Child Cancer Foundation annual appeal week is coming up. You can read all about Petra Hancock who is the face of this year's appeal. It will be from Monday 10th to Sunday 16th of March and in Wellington there will be a street collection on Thursday 13 March. Alison from CCF discussed the possibility with me to help them out as coordinator for their spot by Thorndon New World and I felt quite excited at the prospect, but unfortunately then realised that Sanna will be on leave during this time. And that means that Terence and I will somehow have to find a way looking after the kids.

Before Bianca became sick, I never knew exactly what the Child Cancer Foundation does to support patients. And not just patients, their families as well. And we honestly would not have coped if it was not for CCF. We have no family here in New Zealand and most of our friends are all living in other countries. So without the CCF it would have just been us, all on our own. They help out with meal- and petrol vouchers, they organise events such as morning teas, Dad's day out, the annual Christmas party, camps and so much more and quite often just being there when you want to just talk (or not). CCF has become family! It is quite disappointing that such an important charity has no funding and has to rely completely on donations and sponsorship. Child cancer is pretty much a life-long situation where not only the patient is affected, but the whole family. Even long after treatment stops, there will still be effects to deal with and it is comforting to know that we will have CCF right by our side!

So I really do feel that I want to find a way to give something back to CCF to say thank you so much for everything they do for us. That's why I am so disappointed that I won't have the opportunity to help out this time round. But next year, and of course I will be right there with Funrazor this year!

So if you are able and looking to support this worthwhile cause, they are looking for somebody who would enjoy coordinating a collection point on the 13th of March (they have a meeting at the Wellington offices this coming Wednesday 27 February at 7pm). Or if you have an hour to spare, they would appreciate your assistance with collection. And to the rest of you in New Zealand, look out for the CCF collection points from 10 to 16 March 2008!

Please email Alison O'Connor at aoconnor@childcancer.org.nz for more information!

Discharged again!

On Friday we had to move rooms again. It is not the easiest job because you don't realise how much stuff you have until they walk through the door announcing "we are moving you to another room". But luckily we can just "dump" most of the stuff on Bianca's bed each time. So we moved to one of the rooms with a bathroom.

Having fun playing:

We decided it would be best for Terence to stay at the hospital this weekend because he had to do some work and it would be easier than looking after Caitlyn as well. So after Caitlyn's nap and a quick lunch I set off with lunch for Terence and Bianca. Bianca ordered a "feast" so I made a variety of things almost like a picnic. I saw Bianca and Terence for all of 20 minutes. Bianca enjoyed her "feast" and Caitlyn loved exploring.

Terence started working and Caitlyn and I left. Last night I felt a bit down. It was horrible seeing Bianca and Terence for only 20 minutes, wishing we could spend more time together, not knowing when Bianca would be discharged. This past week Caitlyn and Bianca saw each other for 1 day and then 20 minutes yesterday. We try so hard not to separate them too much, but sometimes it is difficult.

Today Bianca was discharged. I was so excited when Terence phoned to tell me. And then of course we had to try and fit all our stuff in the car. But it didn't matter, we are all home tonight!

Bianca is off chemo for the time being and we have to be back on Wednesday for a checkup. Bianca still has the rash, but she is just on oral meds at the moment, and in the meantime, she won't be able to go to ballet and so on.

And then big news, I start work again on Tuesday. It is a 6 month contract position and I am quite excited. Of course I do have some "what ifs" in the back of my mind, the last time I took a job offer I really wanted, Bianca was in hospital 2 days later and of course I cannot help wondering if Bianca will be fine or if we will be in for more hospital stays. But I know it is just a matter of getting my confidence back.

But tonight we are just enjoying being a family together again.

Happy Birthday Caitlyn, you are 1 today!

Happy birthday little girl!

Today exactly a year ago you joined our family and you made Bianca the happiest big sister ever and Mommy and Daddy were so pleased that you came to stay. We were quite surprised that you weighed 4.7kg and had this thick mop of dark hair on your head. Quite different from Bianca who weighed 3.5kg and had virtually no hair and later blonde curly hair.

You won't remember it, but you were just over 3 months old when your big sister became sick.

And as we sat there digesting the news of Bianca's illness and our new life I vowed that we will remember all your achievements, your development, so I made a point of putting your photos and stories in the blog as well.

You also don't realise it Caitlyn, but you brought a sense of normality into this "new life" of ours. You brightened Bianca's day every single time you visited in hospital and also at home when Bianca gets excited each time you smile, clap hands, crawl or try to walk.

Today I will make sure you have a chance to open one of your birthday presents, but we promised your big sister that we would wait for her to get out of hospital and then we will have a really nice, fun birthday party for you. Bianca will want to help bake your cake (she already chose a fairy cake for you) and she will want to help decorate it (probably with pink icing). And then she will gently help you open your presents and show you how to blow out the candle on your cake. Because that's what Big Sisters do!

You are our special baby girl. Thank you for your beautiful smile, and the fun moments you bring us all. Mommy, Daddy, Bianca and Sanna love you very very much!

And we are back in hospital!

Our freedom was short-lived. This morning it seemed as if the spot on Bianca's face started spreading. So I took a photo, emailed it to Jo and then phoned her to see if it was anything to be concerned about. Instruction: "bring her back in". And it is funny because usually it takes us a good week or so to catch our breath and slowly unpack all the bags and things, but last night Terence and I unpacked most of the things. So there I was scrambling around to pack bags again.

Got there and they confirmed that it is shingles. Basically once you have had chicken pox the virus stays with you for life and can then flare up as shingles at any time especially in kids with low immunity, although it is definitely more common in adults.

Look at the redness around Bianca's mouth:


Kate the play specialist came to visit Bianca and Bianca really enjoyed it a lot:

Bianca was so very brave when they put her wiggle in. Not even a tear in sight. Bianca does pull a face when they put it in, but the skin is numb so it isn't sore at all. (The dark bits underneath Bianca's lips, chocolate!):

It has been 260 days since we started treatment and to date Bianca has spent 83 days (non-consecutively) as an inpatient at Wellington Hospital of which a total of 43 days spent in isolation. It really is starting to feel like our second home.

So basically today we did 2 doses of the antibiotic and the anti-viral meds and then that was stopped so now we are back on IV anti-viral meds at the hospital, Bianca also had her co-trimoxazole twice today and will be getting her Mercaptopurine tonight 2 hours after supper.

Tomorrow morning is also Caitlyn's very first birthday!

Discharged!!!

And we were discharged today!!! It feels really good to be "free". I am so pleased this admission was only a short one. Staying in hospital is usually not that bad, but total isolation - not fun!!!

So basically Bianca's blood cultures came back negative which means she wasn't fighting some or the other bacterial infection. That means it was just the spot on the side of her head. We do feel it was some form of either chickenpox or shingles, but a reactive situation rather than a full-blown illness. Of course the downside of being discharged is that we are now responsible for her antibiotic and anti-viral medication. The antibiotic seems to taste horrible (well Bianca pulls this massive face each time) and has to be given on an empty stomach 4 times a day (so 2 hours after eating and an hour before eating). This will be given for 7 days. The anti-viral is supposed to be given every 6 hours, but the pharmacist said we should basically work it out so that we can give it during awake hours and that way we won't have to wake her up at some horrible time in the night to give her her medicine. This will be given for 14 days. The anti-viral is a tablet and a bit bigger than Bianca's usual tablets, but she is comfortable swallowing this as well.

When I went to collect the medicine, the pharmacist walked over to me and said "the one is a liquid, but unfortunately the other one is a tablet, so you may have to crush it up" And I just smiled and then said "that is fine, Bianca is able to swallow tablets". I think he was quite a bit surprised.

I am now busy making another schedule that we can stick up in the kitchen and tick off as we go along. It feels a bit like having a new baby in the house with a 3 / 4 hourly routine.

We have to be back on Monday morning and will have to go to the isolation area until they are happy that Bianca does not pose any further risk to any of the other children. This will be for a blood test and then probably a quick check-up. And in the meantime, no ballet!

So basically today Bianca had:

• Co-trimoxazole (antibiotic), 6.25ml twice a day, 3 days a week
• Dexamethasone (steroid) - last two tablets for this month
• Flucloxacillin (antibiotic) - 10ml 4 times a day for 7 days given on an empty stomach
• Aciclovir (anti-viral) - 1 tablet every 6 hours for 14 days
• Mercaptopurine (chemo) 2 tablets every single night given on an empty stomach

We have finished our 5 days of Dex. and I am pleased to say that the side-effects were once again minimal. Bianca didn't get overly moody and also not overly hungry, so I am hopeful that this will continue.

Please include little Lucy in your prayers and thoughts. Not only was she recently diagnosed with leukemia, but she is also battling an aggressive fungal infection in her lungs which makes her prognosis very poor. They will be having a CT Scan and a lumbar puncture and bone marrow in the next two days and they will then hopefully have some good news. You can follow their progress here.

Still waiting for blood cultures

Today we moved rooms again. We are still in total isolation, but we are now in an isolation room with its own bathroom, so that does make it a little easier with Bianca. She is back on her Mercaptopurine (daily chemo) (even though the spot is still there) and also had her 2 doses of Dexamethasone today as well. Apart from that she is also still getting loads of IV antibiotics and an anti-viral for the suspected chickenpox. Tonight she was complaining of tummy ache and so she also had some Omeprazole.

This morning Bianca was pretty grumpy, didn't have an appetite and didn't want to do anything. This was the first morning where Bianca seemed unwell since we first noticed the spot on the side of her head.

It is a red spot slightly smaller than or approximately the size of a New Zealand 10c coin and has now got blistery things inside it. That makes them think it is possibly chickenpox or shingles, but of course could still be a bacterial infection. Something like chickenpox stays in your system your whole life but gets triggered when your immune system is down like in Bianca's case, so it is easy to flare up again. In my mind the only place she could have caught something like this was a random "contact" at the shopping centre. There is mention that at some point she can be discharged with the oral anti-viral meds. I'm hoping it can be soon! And of course we will then need fortnightly check-ups and blood tests until they are happy with her and the next visit will be isolated so that we do not pose a risk to the other cancer kids.

I also discussed with the doctor this morning about possibly taking Bianca to the dentist at some point in time for a checkup and basically we will need to make sure her neutrophils and platelets are high enough, she will need an antibiotic prior to the visit and then after again. So once again, nothing is simple in this game.

It is a bit tough on us all at the moment. I see Terence each evening when he arrives at the hospital after work for approximately 5, maybe 10 minutes and then we just quickly chat about any updates on Bianca. Then when I get home I see Caitlyn very briefly before it is her bedtime and then in the morning when I get up again until I leave at 7:30 to go to the hospital. I am so glad that we have Sanna here to help out otherwise I would have still had to try and make a plan with Caitlyn.

Sharon won't be having any bad hair days for a while...

Congratulations Sharon on your big hair shave, you look really good and here I thought that my size 1 was brave. And Connor looks so cute with his green hair!!! Read all about the event here. Sharon raised a lot of money for this event!

Possibly chickenpox? I hope not!

Well things are still pretty much the same. Bianca still has the one red spot on the side of her head (which seems no bigger than when they first looked at it on Friday). Of course it looks a little bit different when you look closely and so today they took a bit of a sample to test it. She still has bruise-like spots on her legs. Basically the doctor feels that it is likely that it is a bacterial infection coming from her central line or something like that (but that we should be able to treat with antibiotics). But for the time being Bianca is off the Mercaptopurine and we are finding out about the Dex, although she had her 2 doses of Dex today.

However, the texture of the spot looks like there might be a very small chance it could be because of chickenpox contact (or so they tell me). For the life of me I cannot even imagine where Bianca would have had any chickenpox contact. But in this game, they have to take precaution even when they are still waiting for results. And of course if in the unlikely event that this is chickenpox then that means we have to be careful that none of the other patients have any risk whatsoever. So they moved us to Ward 19 into a proper isolation room.

I miss Ward 18. Ward 18 sort of feels like home to us. And of course being in proper isolation means Terence and I can't even use the kitchen at the moment, we pretty much have to rely on the nurses to bring us whatever we need.

In the next day or so we will hopefully know what we are dealing with and in the meantime we will stay put and just wait. I'm hoping it is not chickenpox and we can move back upstairs.

Thank you so much Sanna, if it wasn't for you, then today I would not just have had to entertain Bianca in an isolation room, but I would have also had to deal with a busy baby!!!

Medicines today:

• No Mercaptopurine (chemo) tonight as we wait for the spot on Bianca's face to clear.
  
• Dexamethasone (steroid) - 2 tablets twice a day (this is taken 5 days every month).
• Vancomycin - 6 hourly through IV.
• Gentimycin once a day through IV.
• Acyclovir (not sure how you spell this) - 8 hourly through IV.
• Piperacillin Tazobaclan (not sure how you spell this) - 8 hourly through IV.

Admitted to hospital

Pretty much always on a Sunday...

Terence was at work today. For most of it we had a pretty relaxing day. The girls and I did go for a bit of a walk at the shopping centre, just to get out the house a bit. Late this afternoon, Bianca had a bit of a runny tummy (I sure hope she did not catch anything from Terence). Several times today she would cough a bit sounding as if she was trying to clear her throat and then at one point Bianca complained that her left ear was sore. I asked her how long it was sore and she said "a hundred years". She didn't have a temperature, but then Dexamethasone did this to us before where Bianca was fighting an infection and she had no high temperature.

So Terence called the hospital and they suggested we bring her in for the doctor to have a look. When we told Bianca we were going to the hospital, she smiled and said "I will need a yellow bead for staying in the hospital". She really does associate each treatment or procedure with a specific bead.

So then of course we had to scramble to pack a bag (for just in case) and off we went. Thank you so much Sanna for looking after Caitlyn for me.

We waited a bit and then saw a registrar who had a quick look at Bianca and then they called the paediatric oncologist locum. We are still waiting for full blood count to come back, but in the meantime they admitted Bianca just as a precaution and she will be getting some antibiotics. She has several bruises on her legs which apparently looks different than the bruises with low platelets and it could mean clusters of bacteria under the skin or something like that. I learn new things every single day.

So now Terence is staying with Bianca tonight and I will be there tomorrow during the day and then we will see what they say and how long we may have to stay. And here I was hoping our maintenance phase would be boring.

So as I was driving home at 10pm tonight from the hospital, they played the song Maggie from Foster and Allan. That brought back some memories. My mom, aunt and several other people I knew used to listen to this song. I remember that those days sometimes felt tough, of course everything feels tough when you are a teenager and of course there is nothing worse than getting all that homework from school... In hindsight those days were a much simpler time, much less complicated than now and I wonder, when I look back in years to come, whether I will think "wow, this time was surely a much simpler time" or "wow, what a challenging time".

Medicines today:

• Mercaptopurine (chemo) - 2 tablets a night (this is taken every single night)
  
• Dexamethasone (steroid) - 2 tablets twice a day (this is taken 5 days every month)

The start of month 2 on our maintenance phase

Today was Day 29 (of 84 days) of round 1 of our long term maintenance. So basically this means that we started month 2 of our first round of maintenance. We waited quite long at the hospital this morning because they were really busy. Bianca didn't even cry when they put her wiggle in, they then drew blood, gave her her Vincristine (chemo) through her port and then took the wiggle out again. We then went home. Jo said that she would phone me with the results and also fax the script for our medicines to our pharmacy (dosage dependent on blood test results).

On the way home we had to stop by the shop to get some stuff for supper. Bianca then asked "where did my wiggle go?", she didn't even realise they took it out after the chemo and she must have thought it stayed in.

Eventually at around 3pm I phoned the pharmacy to ask when I could expect the medicines to be ready and they then casually said that the script arrived after their cut off time, "but that's okay the medicines will be ready tomorrow". And I said "no, it can't wait until tomorrow it is chemo, we need it for today". So I had to phone the hospital (they confirmed that it was faxed a while back already, so I'm not too sure what the cut-off time is for this pharmacy) and they then ordered the medicines from another pharmacy close to the hospital.

So basically that meant I drove 110km today. So now in future I guess I will only work with the pharmacy close to the hospital. I was a bit concerned that our pharmacy didn't seem in the least concerned that Bianca would have missed her daily dose of chemo.

So Bianca's results are:

• Haemoglobin - 111
• Platelets - 187
• White Cell count - 2.83
• Neutrophils - 1.82
  

They try to keep the neutrophils at 1.5 so they increased Bianca's dosage and this then means in two weeks we will need to be back at the hospital for a blood test.

Bianca has a smallish red spot on the side of her face. We will need to keep an eye on it to see if it goes bigger or if she gets more spots. I am pretty confident she hasn't been in contact with anybody with chicken pox. So now on Monday morning we will go back to the hospital and they will possibly treat it with oral antibiotics if it is still there.

So we have now also started the Dexamethasone for this month and so it will be interesting to see if Bianca will have minimal side-effects from this drug again. I sure hope so!

Bianca has been pretty happy and is looking good. She seems to have lots of energy, is interested in playing and her hair is coming back!!! The only concern is her eating. She hasn't been too keen on eating (she is willing to eat, but not always keen on what we offer), but I understand the 6-MP can do this and at least Bianca's weight isn't a concern at the moment.

Medicines today:

• Vincristine (chemo through Bianca's port) (this is once a month)
  
• Mercaptopurine (chemo) - 2 tablets a night (this is taken every single night)
  
• Methotrexate (chemo) - 3 tablets once a week at night (this is taken once a week, except Day 1)
  
• Dexamethasone (steroid) - 2 tablets twice a day (this is taken 5 days every month)

11 is a great number...

Today Caitlyn walked 11 steps before sitting down again. Wow, 11 steps! It is so cute, she will stand up and then proudly clap hands and smile and then you can see her mind working, trying to figure out what to do next.

Terence had a bit of a tummy bug. I'm really praying very hard we don't all get sick - especially Bianca. We've done so well so far the past month on maintenance and I wouldn't want to have to stay in hospital at this stage.

Tomorrow morning is Bianca's monthly hospital visit so we will be there early in the morning for that. She doesn't have theatre, it will just be some chemo through her port and a check up by the doctor. I expect we will probably have to wait for blood test results in case we need to adjust dosages. We only got enough chemo to last us for the month and will need another prescription tomorrow. And of course we will have 5 days of Dexamethasone again. Let's hope it is just like the previous set of 5 days where she didn't have too many side-effects. Tomorrow is also Day 29 of round 1 of our long term maintenance phase and that means we have now completed 1 month.

Medicines today:

• Mercaptopurine - 1.5 tablet a night
• Co-trimoxazole - 6.25ml twice a day

The road that we walk

There was a story in our paper today. The three-year-old daughter of Wanganui mayor Michael Laws has been diagnosed with leukaemia and is also suffering from acute pneumonia. I feel so sad for them as I remember the devastation that we felt when we got the news about Bianca, as I remember that I sat there feeling that the journey felt like a prison sentence. All the new words, all jumbled up in my head.

But we've come a long way. Sure we still have a long way to go, but it certainly has become more manageable with each step we took.

I feel quite shocked when I think about the number of kids fighting this battle every single day. It makes me a sad too, that these kids have to deal with so much more than many adults deal with in a lifetime. But these kids are so strong, so brave and wow, they sure can teach us a thing or two about living life to its fullest!

For most of it Bianca is just a little girl, doing little girl things. She loves playing games and will sometimes say the funniest things. Sanna and Bianca were playing a "story telling game" where you have to make up a story based on pictures on cards:

• Sanna: "What is the girl in the picture's name?"
• Bianca: "Hmm, I don't know"
• Sanna: "What about Sanna or Lea?"
• Bianca: "No, those are adult names and this is a girl"
• Sanna: "But you will keep your name even when you are an adult"
• Bianca: "No, Bianca is a girl name, I will be changing my name"
• Sanna: "To what?"
• Bianca: "Cannie"

And then sometimes Bianca will say things that remind us that this process forced her to grow up pretty quickly. Like the other night when we said prayers, she said "And thank you for making me brave with my injections".

As parents our instinct is to want to protect our children from all the nasties in the world. And certainly it broke my heart when I had to take Baby Bianca for her injections. So much so that it was Terence's job. Since Bianca got sick, I couldn't shift the responsibility and I had to become stronger, so yes, it is easy to want to sugar coat things, it is easy to want to avoid the subject. But I found that when we are honest and when we explain about things (no matter how unpleasant they may be) then Bianca feel more prepared, more in control. Of course I had to find a way to explain things so that she is better able to understand. Things like:

"The soldiers in your body are sick and they need special medicine to help them get better so they can fight the bugs" (It sounds less complicated than "the immature white cells are crowding out the mature ones").

"Platelets are just like having little doctors under your skin, they fix the bruises and the sores" (Certainly much less complicated than "platelets are the cell fragments circulating in the blood that are involved in the cellular mechanisms of primary hemostasis leading to the formation of blood clots" - thanks Wikipedia)

And explaining to her that blood is just like an egg. An egg has a shell, it has the white bit and the yolk. But it is still an egg with 3 different parts and just like this, you have blood, but it has different parts like platelets and plasma.

So in a way, I believe that knowledge is power and will protect her and make her feel "safe" in a way I guess. And then the little girl comes forward again, she doesn't brood over what happened, she doesn't have any regrets, she doesn't keep talking about the "life she had", she just smiles and happily carries on playing, because now is all that matters!

Medicines today:

• Mercaptopurine - 1 tablet a night
• Co-trimoxazole - 6.25ml twice a day
  

All set for school

I feel quite excited. Bianca is all set to start pre-school on 5 May 2008 (term 2) and then probably around term 3 will start "big school". We are just waiting for a letter from the school and then one or two things we have to provide. Wow, I am so excited. We had to be quite selective with a school. We wanted small classes. It has to be a school in the city so that we could take Bianca to hospital at short notice if we need to and to be close enough to the hospital for her monthly treatments without spending too much time traveling. And of course most schools are "zoned" in New Zealand which means your child has to go to a school in the area that you live. And with us still renting, there is just no guarantee we will end up staying in this area. So we chose a school in the city about a block away from where Terence lives. This school also has quite a good reputation and high standards.

Bianca has just been so very excited about starting school. In fact one of her favourite games at the moment is playing "school".

So today Bianca started ballet again. It brought back some memories. The last time Bianca went to ballet was almost 9 months ago. There is a little bit of a walk to the dance studio and Bianca and I were walking and I was pushing Caitlyn (who was 3 months old then) in her pram. Bainca kept complaining that I was walking too fast, that her legs were tired. I thought that it was just her acting like that because of her new baby sister. That was 30 May 2007. It was a busy day and an exciting day. I got a job offer just before we left for ballet and I was so excited. Then as I sat there tying Bianca's hair up, that was when I felt the huge swollen gland behind her head underneath her hair. And then 2 days later Bianca was admitted.

Today was quite different though. Bianca didn't once complain that her legs were tired or that I was walking too fast. And boy did she enjoy it. She couldn't wait for the class to start and afterwards she happily said "I had fun!" If she had hair, she would have looked just like any of the other girls in her class, so of course that was a constant reminder of the road we are still walking. The studio also handed out little notes to ask parents to let us know if their children should pick up things like chicken pox and measles. It felt good though for Bianca to be doing normal "kid" stuff again and it was so nice that none of the children made any hurtful comments.

Bianca has a few bruises on her legs. We are keeping an eye on it in the meantime. Bianca is due in on Friday for blood test and chemo. When I looked at the bruises Bianca said "I have little doctors under my skin". I explained to her that platelets are just like having a little doctor in her blood that helps to fix bruises and other sores.

Medicines today:

• Mercaptopurine - 1 tablet a night

Caitlyn's first two steps

Big news today is that Caitlyn took 2 steps. She was standing all by herself and then took a step. Then she was still standing and then took another step. So I guess not long now...

We didn't do much. Terence had to go to work today and so the girls and I spent the morning at home and then this afternoon after lunch we went for a stroll around the shopping centre. It was nice just getting out the house a little bit. In the one shop I found the biggest balloons I've even seen and I bought some. Got home and blew up a balloon for Bianca. I think it could have gone a bit bigger, but I decided it was big enough.

Please remember to add yourself to our buddy map. Click here. It doesn't ask for any personal information except your name, the city and country where you live and if you have a website (if you don't then just leave this bit blank). And if you would like to insert a photo, you could do this as well. We would love to know who our supporters are and where they are from.

Sharon, are you getting nervous? Just 1 more week to go before you shave off all your hair. If you would like to sponsor Sharon, please let me know. Read original entry here.

Medicines today:

• Mercaptopurine - 1 tablet a night

Just a quick note!

Tonight I published 3 posts. Please scroll down to read.

Also I added a buddy map way down at the bottom of this page. I would love it if you could take a moment to add yourself to the map. It would be great to see who our supporters are and where you are from.

It is really easy and really simple and all you do is click on the instructions (see "Add yourself").

A fussy day

So today was a fussy day. There is no other word to describe it. Caitlyn was fussy pretty much at all mealtimes, not wanting anything we offer. And then she flat out refused to sleep this afternoon so then by 6pm she was pretty tired and I had to take her to bed, even though it was way too early for her. And Bianca seems to go through a stage where she is willing to eat her food, but she drags out the mealtime for the longest time and you find yourself constantly reminding her to eat.

So all in all, a pretty fussy day. And of course tomorrow (even though it is Saturday) Terence will be at work and so I will be babysitting pretty much the whole day.

In 2 weeks my baby girl is turning 1. Wow, I cannot believe it. Next week I have to plan a small little party for her. It will pretty much just be us. But I think Bianca will be quite excited getting involved in the planning of this. And to think she was 3.5 months when all this happened and now she will be turning 1 already!!!

Medicines today:

• Mercaptopurine - 1 tablet a night
• Methotrexate - 1.5 tablets this evening

Hair one moment, gone the next

On the 16th of February Sharon, Terence's sister will be shaving off all her hair for Shavathon. This is to raise funds for the Cancer Foundation in South Africa. This is something close to our heart. A couple of years ago, Terence, Sharon and Alistair's mom lost her battle to cancer. And of course now we are walking this journey with Bianca.

The thing with this horrible disease is that it catches you when you least expect it, when you have had no time to prepare, and I can honestly say that without the support of organisations such as the Child Cancer Foundation, and to many people Cansa (Cancer Foundation in South Africa), we would be truly lost and unable to cope. They are there for us to take care of our emotional needs and often helping out with practical arrangements such as travel, accommodation, our voice when we are unable to speak and sometimes even financially. These type of organisations don't get any funding whatsoever and rely on donations and sponsorship to achieve their goals.

If you would like to sponsor Sharon, please let me know and I can get the details to you.

This will all be gone by the 16th of Feb.

Going the extra mile - 140 miles that is!!!

So yesterday I discovered a new site. You can see it by clicking here. It is all about 2 ordinary guys preparing to compete at Ironman Lake Placid on 20 July 2008 and at the same time raising money for the Leukemia and Lymphoma Society. The Ironman is a triathlon that encompasses three endurance events: a 2.4 mile swim, a 112 mile bike, and a 26.2 mile run which has to be completed in less than 17 hours.

The goal of their project is to raise $100,000 for the Leukemia & Lymphoma Society. The Society is the largest voluntary health organization in the world, dedicated to funding blood cancer research and providing patient services. They both have a strong connection to this cause and they want to make a difference in the lives of patients and the families that have been affected by one of these deadly diseases.

I think this is absolutely amazing that somebody would put so much effort into supporting such a worthwhile cause. Please visit their website and support them if you are in a position to do so.

Please have a look at Bianca's profile on their site!

A day of fun with Daddy

Today was a public holiday here in New Zealand. It was Waitangi Day. It is held on 6 February each year and celebrates the signing of the Treaty of Waitangi.

Terence and Bianca took the train to the city. From there they went to Te Papa - our National Museum here in Wellington. It is a huge and wonderful place and very interactive. Bianca especially likes the exhibits where she can press a button to hear animal sounds or people explaining about the exhibit. There are several areas specially for the kids where the kids can look under a microscope and so on. They also went to one of the special exhibits all about whales. There was a huge fibre glass whale heart that Bianca could climb in, she saw some whale skeletons and she could even touch a whale rib! They also had some ambergris that she could smell. A highlight was listening to the sound of whales in the elevators.

At Te Papa they also have a section called Story Place. This is a room where they have sessions lasting approximately 45 minutes several times a day. This is for children 5 and under. They usually have a theme and then tell some stories based on this theme. Here Bianca is listening to the story.

Then they had an interactive play area also based on the theme. Today's theme was "On the Farm". So Bianca could hunt for play eggs, she could feed a play lamb and so on.

She really enjoyed it. It was a quiet session and it was only Bianca and another little girl named Allie. Bianca had great fun playing with Allie and Terence shared our contact details so that we are able to arrange a play date at some point.

Afterwards on the way back to the train station, they stopped off at a park in the city and Bianca had some fun playing on the structures.

And then when they got back it was pretty much time for supper.

Today felt a bit like weekend and I expect it will feel almost like Monday tomorrow (except it will be Thursday).

Yesterday was exactly 8 months since Bianca was first diagnosed. And today exactly 8 months since our very first treatment and the day Bianca got her port surgically put in. 8 Months! I can hardly believe it.

Looking back it went pretty quick, but of course on the 6th of June 2007 when we sat there with all the documents and information about Bianca's diagnosis, it felt as if it was going to take forever to get to maintenance and all I could think of was how very much this felt like a 2 year prison sentence.

My mind kept racing, trying to find a shortcut, trying to find an easy way out. But there was nothing. No options but to push ahead - almost like being pushed from a diving board and all I could do was to keep going. I sometimes imagined that Bianca and I walked through this long corridor and we opened one of the many "doors" and walked through, I imagined the "door" slammed shut behind us and then we noticed that it was the "leukemia door". I sometimes wondered - what if we chose a different "door"? But of course if we chose a different "door" there was no telling what would have waited for us, maybe the same? Maybe something worse? Who knows?

Way back then I had all these jumbled thoughts running through my mind, trying to make sense of it all, trying to understand, trying to have a simple solution. But then very quickly we sat down and decided that we would take one day at a time, if we can run this race by just "taking one more step" then before we know it we would be able to look back and feel proud of what we achieved. It became important to us to "jump into a positive frame of mind", but also to try and keep things as normal as possible. That meant not treating Bianca any different just because she became sick, we would still expect good behaviour (of course the Dex is sometimes a bit tough), we didn't want her to walk this journey "feeling sorry for herself". We wanted her to still have fun.

Today was Day 20 of 84 of round 1 of our maintenance. Things do feel a bit more settled, of course things aren't as straightforward as it used to be, but it is manageable. And whilst this journey is a pretty tough one and probably the hardest thing we've ever had to do, it is an amazing learning opportunity. This road led us to some wonderful people that we would never have met if Bianca did not get sick.

Next week Friday (on our Day 29) will be a hospital visit as well as monthly Vincristine. And it will be interesting to see what her blood test results will be like whether they will have to adjust the dosage or not.

Medicines today:

• Mercaptopurine - 1.5 tablet a night
• Co-trimoxazole - 6.25 ml twice a day

Happy birthday Terence!

Today was Terence's birthday. Last night Bianca and Daddy baked a chocolate cake. This morning we started off by letting Terence blow out some candles and opening some presents.

Terence then had to go to work.

I went to the Child Cancer Foundation for their monthly morning tea. It was great to catch up with some of the now familiar faces and some new faces. I met a mom and her little boy who is from Wellington, but mainly treated in Auckland. Her little boy is so cute. He also has ALL. They will be here for a little bit before they have to be back in Auckland.

I didn't take Bianca along with me because she still coughs every so often and I didn't want to take her just in case it might be something to worry about. Wouldn't want to share bugs with any of the other children.

At CCF they gave the cutest, fluffiest teddy bears for the children and I managed to get one for Bianca and one for Caitlyn.

They also had some volunteers from Bank of New Zealand and so Bianca also got a piggy bank. So now each time she gets pocket money she will be saving some of it.

Then this afternoon all of us went Tenpin Bowling. Bianca loved every minute of it! And then supper before we came home in time to bath the kids.

All in all a good day!

Terence got some nice birthday emails and a quick phone call from his dad (living in South Africa). Thank you very much!

Medicines today:

• Mercaptopurine - 1 tablet a night
• Co-trimoxazole - 6.25 ml twice a day
  

A visit to Kenepuru Hospital

Today Bianca spent some time doing some painting. Last week she got some activities from The Correspondence School. She had lots and lots of fun and she made quite a mess! Bianca loves painting.

Bianca also complained of a sore wee today. It was only once though and no fever, but we've had past experience where she complained of a sore wee and it was either a urine infection or kidney stones. So I phoned Jo and she told us to go to Kenepuru Hospital (normally we go to Wellington Hospital, but Kenepuru is closer to us and it was just for a urine sample so Jo sent us there). The sample came back clear and it has now been sent to the lab to culture it to see if there are any bugs in there that we may have to worry about. So then we came back and they will phone us if there are any worries.

She still coughs a bit, but mostly evenings and just as she wakes up. It hasn't gotten any worse, so for now we are just keeping an eye on it.

Caitlyn learned a new trick. We close the door in the play area so that she does not crawl to the other rooms and gets into mischief. So now a couple of times today she crawled up to the door, pulled herself up and opened it and she was off, very proud of herself.


And she's standing up by herself more and more often. Wonder when those first steps will happen...

Medicines today:

• Mercaptopurine - 1 tablet a night