2008-01-30

Quite a busy day

Tonight Bianca was playing with a pretend fishing rod. She took something, tied some string to it, put some bits and pieces at the bottom of the string and then proudly declared "I have a fishing rod with bait". Terence then asked "did you put the bait on yourself?" and she then said "no Daddy, I'm put it on the fishing rod!".

This morning Bianca and I went to the Child Cancer Foundation offices in the city. Marg prepared some documents and information for me that might come in handy for the meeting tomorrow with the school. The CCF office is right by the hospital and so I took along some bits and pieces to give to Kate, the play specialist. She is always looking for things to do with the kids on Ward 18 and so I always keep an eye out for something that might come in handy.

Kate is always looking for craft type of activities, art supplies, toys that are easy to clean (so no soft toys), Playstation 2 games and DVDs (all zone 4), books, puzzles and board games and basically she needs to entertain kids up to 15 years of age. So if you are cleaning out those closets or you have the odd unwanted present lying around the house (or if you want to strategically misplace that noisy toy that drives you insane), please consider donating it to the hospital. Kate and her activities have always been a huge lifesaver to us when Bianca is in hospital and we run out of ideas of what to do with Bianca. Kate is also looking to have dedicated activities / toys just for the oncology kids.

Today Bianca got a special bead because we felt it was such a huge achievement that she learned to swallow tablets. Since she learned, it has just become so easy to give her her tablets.

I also had an interview for a possible exciting job opportunity and another that might happen soon as well. I do feel quite excited that I may have the opportunity to go back to work again.

Tomorrow morning is our interview with the school. Bianca is quite excited and she wants to take an apple for the teacher. My little girl sure is growing up fast!

Caitlyn is still as busy as ever. Today Sanna blocked off the kitchen (it is all part of an open plan living area) and as soon as Caitlyn realised she couldn't go into the kitchen she had a bit of a temper tantrum. Not even 1 yet and we are already having some mild "terrible twos" :-). She loves waving and when we feed her meals, we always give her her own spoon and then she will proudly dump it into the food and then attempt to feed us.

Sanna had quite an adventure yesterday when she took both kids to the beach. She had to keep an eye on Bianca playing as well as an eye on Caitlyn who tried to eat the sand, drink the water, eat the shells. Then on the way back to the car, Sanna was carrying Caitlyn, had the bag on her back and held Bianca's hand. Next moment a bee came buzzing around Bianca's head and of course Bianca freaked out. So there was Sanna, trying to hold onto Caitlyn, bag on the back and Bianca running around Sanna screaming. So Sanna had to explain very nicely that the best way to deal with a bee is just to stand still. I think next time Sanna won't take both kids on her own to the beach :-).

Medicines today:
  • Mercaptopurine - 1.5 tablets a night
  • Co-trimoxazole - 6.25ml twice a day

2008-01-29

Thinking, thinking, thinking

Yesterday I thought so hard, it made my head hurt!

On Thursday morning we have an appointment at the school we would like to send Bianca to when she turns 5. So now I have all these thoughts running through my head wondering what information about Bianca is important that they would need to know about, things like telling us if somebody picks up chickenpox. There are also other things in the back of my mind as I consider options for when Sanna leaves in a few months' time. I have no idea what we will do without her, she has very much become part of our family and the kids love her to bits! I would like to go back to work, but even so we still need some backup options in case Bianca is not able to go to school, there is still Caitlyn to consider and Bianca will still need to go to the hospital at least once a month for treatment when it is not ideal to take Caitlyn along.

In one way it feels really good to think that we can start doing normal things, consider things like school, but in another this journey made me somewhat neurotic, always wondering and always "what if?". Even at the shops, I would hear every single cough and every single sneeze as I walk past people.

So far so good, Bianca seems happy, she seems interested in doing things, she seems to cope with her medicines. I'm very much hoping that it will stay like this, but I'm so aware that things usually change when you least expect it - like on a Sunday night when you don't have a single thing packed.

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

2008-01-26

Next project: Growing a popcorn tree

Last night Terence and I went out and Sanna (and Bianca) babysat Caitlyn. Sanna and Bianca watched Willy Wonka and the Chocolate Factory and an hour after Bianca took her oral chemo Sanna made some popcorn for Bianca (the chemo Bianca takes every single night has to be given 2 hours after supper and cannot eat anything until a further hour has passed). When Bianca finished eating she told Sanna she wanted to keep the unpopped kernels because she would like to plant it so that she could have a Popcorn Tree and that way she could pick popcorn whenever she felt like it.

Terence and I went to see Presenting the Tinkles at the Bats Theatre in Wellington. It was really good and quite funny. If you are in the Wellington area, you have to go and see it.

Yesterday morning Bianca was a bit sad and cried for every second thing and it didn't help that I was up with Caitlyn 3 times in the night. In the morning Terence and Bianca went to the Botanical Gardens to the Grand Fairy Ball. Bianca didn't really dress up, but was wearing some fairy wings and wore a princess crown. It was quite busy and thank goodness it was outside because Bianca could run around and play a bit too.

And then when it was time for Cailtyn's afternoon nap, she just screamed and screamed and we sort of wondered if she was in pain anywhere, but at the end of it decided that it was probably just a temper tantrum because she did not feel like sleeping. My nearly 1 year old is growing up... :-).

This morning Terence and Bianca took the train to Paraparaumu which is approximately 30 minutes away from us. Terence thought it would be nice for Bianca to take the train again (it's been such a very long time since she set foot on a train). They got there just before the shopping centre opened so it was really really quiet. They saw Alvin and the Chipmunks and inside the movies it was just them and two other kids. So it ended up being a nice outing with little risk of picking up some or the other bug.

Medicines today:
  • Mercaptopurine - 1 tablet a night

2008-01-25

Week one of Maintenance completed

This afternoon Bianca asked me to pin a tea towel to her dress and then she said "I've got a cape. I'm Super Girl. Look Mommy, I'm flying". I couldn't help smiling, because to me she doesn't need a cape to be Super Girl and with everything that she has been through so far, she has learned to fly!

Today is exactly 1 week since starting Maintenance. It's been a great week. Bianca is still swallowing her tablets and it's been so much easier than I ever anticipated. This was the best ever advice we got, thank you so much Kate!

I'm hopeful that the way things were this past week is pretty much the way it will be for us going forward, but of course no matter how hopeful, I'm so aware that reality is sometimes very very different. Weeks like the past week is comforting, it feels great, it feels like the old days to some extent (even though we will never again have the life we had before), but I'm wary of feeling too comfortable because then if things do happen, then it will catch me by surprise and I will be totally unprepared.

I'm starting to become a little excited that I might be able to go back to work soon. But I'm just starting to think about it. Not quite there yet.

It's also been a bit of a sad week though. Every day I follow the stories of so many other brave kids out there fighting their battles courageously and this week I read that 3 little children (Ava, Dawson and Isaac) passed away. I feel so sad for them. It really broke my heart. Events like these really pull me back to reality when I realise just how tough this battle or ours really is. When things go well it is easy to have a false sense of security, but things can change just so quickly and unexpectedly. So I pray that these families find the comfort that they need to help them through this difficult and challenging time.

Medicines today:
  • Mercaptopurine - 1 tablet a night
  • Methotrexate - 1.5 tablet at night

2008-01-23

An amazing day

Wow, wow, wow - we had a wonderful day today.

After I dropped Terence off at the train station this morning, I quickly went to the shops and then had a thought that it might be nice for Bianca to go visit her old daycare centre.

I phoned Sue, the manager at Polyhigh and she confirmed that they did not have any serious illnesses making the rounds at the moment. Bianca's whole face lit up when I told her that we would go for a visit.

At around 1:30pm today we arrived. Got there and we saw a big note on the board by the gate "Welcome back Bianca".


When we got there she got a present that one of the other children made for her:


I thought she would be all shy, but she just had the best time ever playing with all her friends including Amy and Edie.

Before afternoon tea, they had mat time and they all had to sit in a big circle and they sang songs. They asked Bianca if she would like to choose a song and she chose "Twinkle, twinkle little star". After a few more songs they asked Bianca if she would like to tell the group all about her Christmas. She jumped up, stood in the middle and proudly told the group that she got Hungry hungry hippos for Christmas and that she left milk and cake for Father Christmas.

After afternoon tea I asked her if she was done playing and she said "not yet".

Caitlyn visited the teachers in the under two section. She probably can't remember much about when she used to go, but she was quite fascinated with everything around her. She even joined in the water play and sat with the other kids when they did their afternoon tea.

Today felt so much like the old days, the days before Bianca got sick. It was just so great to see Bianca playing and laughing and having fun. She felt completely at home and all the children really made her feel so welcome. We'll have to do this again some time.

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

2008-01-22

Starting ballet lessons soon

Today I heard from Jo and she confirmed that the doctors are happy for Bianca to start ballet again. Bianca is so excited. She used to love going to ballet and dressing up and everything. She will be going to the Paula Hunt Dance Studios. So now I'm waiting to hear when classes start.

Bianca is also busy getting her hair back. It will take a while before it will be obvious. I can barely remember what Bianca looked like with hair and whilst I am so very excited that she will be getting hair again, I think I will be missing the way she looks now.

Before Bianca was diagnosed:


After Bianca lost her hair:

Today was another good day. Sanna and Bianca went to Aotea Lagoon and there they saw a man fishing and Bianca picked up a stick and said to Sanna "I'm going to fish as well". The man heard them and then offered Bianca the chance to try with his fishing rod twice. Bianca was so excited, sorry we didn't get your name, but you really made Bianca's day.

Medicines today:
  • Dexamethasone - 2 tablets twice a day
  • Mercaptopurine - 1 tablet a night
  • Co-trimoxazole - 6.25ml twice a day

2008-01-21

A big achievement

Tonight at bath time Bianca asked to play Eye Spy. She likes to play it according to the letters of the alphabet. So she will say "Eye Spy with my little eye, something beginning with an A" and then I would have to continue with "B" and so on. Then when we got to "I" she told me "...like ice that you put on your leg to numb the face when you get an injection" - she referred to the time when she got 6 injections (one every second day) and Jo would draw a face on her leg so we would know where to put the ice to numb her leg.

On Friday, Kate the play specialist gave me a wonderful kit on how I could teach Bianca to swallow tablets. For the next 2 years at least Bianca will have to swallow tablets pretty much every single day. Sometimes more than once a day. Bianca absolutely loves working with this kit. In fact, when Kate brought the kit to us, Bianca wanted to start immediately.

So the past few days we have been working on the suggestions Kate included in her kit. And today I managed to convince Bianca to actually swallow her Dexamethasone. It took a good 5 minutes, but we managed in the end. And then tonight we had to do her mercaptopurine (a chemo) and she did it all in a matter of 5 seconds! She is just so proud of herself and she makes me so proud as well!!! I am so happy that it took so much quicker than I thought it would.

Sanna also came back from her trip to the South Island. Bianca was so very happy. I think she really missed Sanna. It was pretty hard to try and explain that technically Sanna was still on holiday.

Today was actually a pretty good day. Bianca wasn't really clingy tonight, just a bit tearful around bedtime. And I'm still waiting for the huge appetite to arrive. When Bianca first went on the Dex she was constantly asking for food, but tonight she just asked that I put a snack pack next to the side of her bed and that it should be marmite sandwiches. But tomorrow is Day 5 of the steroids and I'm hoping that the past 4 days now at the start of our maintenance is a sign of things to come, of how it will be for us. But we never know, and for us Dexamethasone has always been a bit of an unpredictable one.

All we can really do is hope that one good day will follow another.

Medicines today:
  • Dexamethasone - 2 tablets twice a day
  • Mercaptopurine - 1 tablet a night

2008-01-20

A pretty good day

Woke up this morning and braced myself fully expecting it to be a tough day with the Dex. But apart from asking for a chocolate biscuit before breakfast, Bianca was in pretty good spirits today. She was playful, energetic and generally quite happy. This morning Bianca and Terence went to the beach and explored some rock pools. It was quite windy and the plan was to go and fly a kite, but they ended up spending all their time at the rock pools.

It seems as if 5pm onwards is the time to watch out for. 5pm Arrived and Bianca became clingy insisting that either Terence or I sit with her. She wasn't too down in the dumps but became quite sad when it was time to go to bed and started crying and asking that I lie next to her for a bit.

I'm still waiting for the massive appetite to arrive. So we'll see what tomorrow brings.

Medicines today:
  • Dexamethasone - 2 tablets twice a day
  • Mercaptopurine - 1 tablet a night

2008-01-19

A few side-effects

This morning at around 9am Bianca was watching Spongebob. So then she said "I want a Krabby Patty for lunch". If you haven't watched Spongebob, a Krabby Patty is a hamburger that they make on Spongebob. So we said that we would go to the shop a bit later and get some stuff to make hamburgers at home. Two minutes later. "I want a Krabby Patty for lunch now". "But Bianca it is only 9am". "But I'm hungry for it now". So Terence and Bianca left to go to the shops and they walked around a bit. By the time they got back it was around 11:30 and so it was time to make lunch. Bianca ate most of her "Krabby Patty". For most of it she was quite happy and playful.

Because the Mercaptopurine is supposed to be given 2 hours after supper the kids ate around 4pm. Earlier Bianca asked to have chicken nuggets for supper. But when we gave it to her for supper, she wasn't much in the mood to eat.

After supper Terence took the kids to the park.

By the time they got back Bianca was pretty down. She was pretty much lying on the couch not being interested in doing anything. She still smiled a bit and still played a few games, but she wasn't quite as happy as yesterday.

And I guess the effects of Dexamethasone made its grand entrance... I'm crossing fingers the side-effects will be minimal!

Bianca was going to have a play date with one of her best friends tomorrow, but we will rather postpone until next week or so when the Dexamethasone is all done for this month.

Medicines today:
  • Dexamethasone - 2 tablets twice a day
  • Mercaptopurine - 1 tablet a night

2008-01-18

A busy day at the start of maintenance

Today we started Maintenance. We had to be there at 8:30 this morning and not even a single tear when Jo put Bianca's wiggle in. I'm just so proud of her!


We waited around until 10:30 when Bianca and two other ALL patients went up to theatre. As far as I know they do it in order of age and Bianca was the oldest of the three, so we needed to wait. And then it was waiting. Bianca took her time waking up, but they were not concerned.

So Bianca had a lumbar puncture under general anaesthetic and during this procedure they injected some Methotrexate into Bianca's spine.

I have to wear this funny looking outfit before I can go into theatre with Bianca.


Each time Bianca goes to theatre they send all her information along for "easy reference" if need be.


This is just after Bianca was wheeled into theatre. She is not at all scared of the experience.


Bianca watched as they administered the general anaesthetic, it only takes a few seconds and then she falls asleep and that is usually my cue to leave.

After Bianca recovered we went back to the ward and waited until they were ready to administer Bianca's Vincristine through her port. And then we eventually left to go home.

On the way home we had to go past the pharmacy to collect Bianca's medicines and then finally by 3:30pm we got home. All I can say is that I am quite exhausted after today. There are few things as tiring as doing nothing but waiting.

So now we have to be back in a month's time (so that makes it roughly the 15th of Feb). I'm still trying to understand how this will work as far as neutrophils are concerned and I'm not too sure if we are supposed to be treating Bianca as neutropenic for this month or not - we won't have any blood tests until we go to hospital again. So I emailed Jo and I will see what she says.

I'm also curious what sort of end date we are looking at, but it seems that it might be 2 years from today and not 2 years from the start of Interim Maintenance (which was in September) as I initially thought. So if that is the case, then we will walk this journey until roughly around January 2010.

So in maintenance each phase is 84 days long and then it is repeated and then repeated and so on. And basically each phase will be like this:

  • Methotrexate (as a lumbar puncture) [chemo injected into spine] - Day 1
  • Methotrexate (oral chemo) - weekly starting from Day 8
  • Mercaptopurine (oral chemo) - Day 1 - 84
  • Vincristine (chemo through Bianca's port) - once a month
  • Dexamethasone (steroid) - 5 days each month
  • Co-trimoxazole (antibiotic) - 3 days each week
Kate, the play specialist made the most wonderful "learn how to swallow pills" kit. Bianca can't swallow pills and although it is okay for her to chew her chemo pills, it is better if she is able to swallow it. So now we will practice every single day. So it has lots of tips and we will use some really tiny candy / cupcake decorations and work our way up to something bigger until she is able to swallow the size of her pills. The kit is filled with fun pictures like explaining where the pills go when you swallow it and also a really cool star chart that we will be using. Thank you so much Kate, I'm really excited to get going!!!

This afternoon we noticed Caitlyn has been standing for a second at a time all by herself without holding on to something and she did this a couple of times. I think she'll be walking before too long!

Medicines today:
  • Methotrexate - lumbar puncture (chemo injected into the spine)
  • Vincristine - administered into port
  • Dexamethasone - 2 tablets twice a day
  • Mercaptopurine - 1 tablet a night

2008-01-17

About Camp Quality

When we met Michelle at Nature Discoveries today she mentioned that she is involved with Camp Quality. She mentioned that this is a camp for children from 5 years old. So I came home and looked it up on the internet.

This is something special for children with cancer and I do feel quite excited that at some point Bianca will have the opportunity to do something that is fun, exciting and carefree. For most of it children with cancer live their lives in isolation to some extent. And even though Bianca is only 4 she is so aware of her levels and always concerned whether other people may be sick or not. When we go to the shop she will always ask "can I come with you or do I need to wait in the car?" Of course we'll need to see when she is emotionally ready to go away on her own. But wow, this will be such a big adventure for her.

As far as I can see, it is run entirely by volunteers who get no payment for their efforts. Of course from what I have read there are at least 2 paediatric oncology trained staff present at these camps. So this opportunity can only be made possible with donations.

Basically something like this is Bianca's only opportunity to have a holiday for as long as she is sick. Something that is different from the daily routine and the isolation. It is something that might help her forget about being sick for a few days. And an opportunity to mix with children who walk the same journey as she does. I am so excited for her, I can hardly wait!

There will be a national fundraising week 14-21 April 2008. I won't have details until they release it, but if you know of anybody who might be interested to contribute towards this initiative or to become involved in some way or another, please pass on the information to them. You can also email info@campqualitynz.org.nz if you wanted more information.

I just wanted to say thank you to everybody making something like this possible for children like Bianca. The support really means a lot to us!

We are on our way!!!

Tomorrow is the day!!! Tomorrow chemo starts again and it will be our very first day of the Maintenance phase. So until Bianca is all done with treatment we will run our lives according to a schedule stuck on the kitchen door where we can tick off as things happen. This will be our plan until more or less September 2009.

It is going to be a long day for us and we need to be at the hospital at 8:30 already. Terence will take time off tomorrow so that he can look after Caitlyn. There is just no way that I would be able to take her along with me. From here on they will adjust the dosages according to Bianca's levels and they will try and keep her neutrophils somewhere between 1 and 2. It is important that the neutrophils don't go too high and don't go too low.

Tomorrow we have quite a few things happening including going into theatre. So nothing to eat or drink until after theater is done. Usually I don't eat anything also because it wouldn't be very fair if I could eat and Bianca couldn't. Thank goodness she hasn't started the Dexamethasone yet because it would make her extra hungry. During theatre she will get a lumbar puncture with some Methotrexate injected into her spine. This will be done under GA. Usually she has no problems with this procedure so I don't foresee any problems.

Bianca had the best time ever today. Tonight was late night shopping and so we took Bianca to the shops at approximately 6pm. It was nice and quiet and we wanted to give Bianca a chance to buy something with her pocket money. Something that would be a "normal experience" and not so "isolated". We went to Bianca's favourite shop "Nature Discoveries" and this is the shop that she absolutely loves going to every single time. So we went there. Well, let me tell you she went hyper. She fluttered from one thing to another "come look here Daddy". "See this Daddy". And then she had the important job of deciding what she would buy for herself. We met a lady named Michelle at this shop. She follows our blog regularly (wow, thank you for following our story) and she is also involved with Camp Quality. Michelle, thank you so much for the little fridge magnet toy. Bianca really likes it and when we got home she immediately stuck it to the fridge. You really made her day! At the end of the shopping trip, she proudly declared: "I paid for it myself!"

Thought I'd share a few photos.

Bianca really likes helping out in the kitchen. Here she is helping me make blueberry pancakes:


When we went to the park the other day, Caitlyn really enjoyed being on the swing:


The other evening Daddy and Bianca made a tent in the play room and they "camped" out for the evening. Bianca had her little torch to chase away any possible wolves that may come around...


The day after when we walked past Bianca's room, we saw her sleeping with her feet inside her pillow case. She must have pretended it was a sleeping bag:

Now one day it was warm enough to swim in our inflatable pool. Bianca and Daddy discovered a ladybug and Bianca even let it crawl on her hand:


Medicines today:
  • Co-trimoxazole - 6.25ml twice a day

2008-01-16

On track so far

Got the unofficial blood test results:

  • Haemoglobin 135
  • Platelets 203
  • White Cell Count 2.94
  • Neutrophils 0.87

Jo will confirm tomorrow, but so far we look like we are on track to start Maintenance on Friday. Her Neutrophils went down from the last one, but once Bianca starts Maintenance they will keep adjusting the dosages of the different oral chemo medicines to try and keep her neutrophils between 1 and 2. So sometimes she will get 100% dose, sometimes more than 100%, sometimes less and if her counts are way too low, then they will hold off on the oral chemo to give counts a chance to recover. So a whole new learning experience for us.

Jo also told us that we need to stop the Fluconozole as it is only really needed during intense treatment. But now that Bianca is done with the intense bit, no need to carry on with this one. So one less medicine. Of course we won't really feel the difference that much as Bianca is still getting co-trimoxazole today and tomorrow and then Friday we will probably start with the next phase and then chemo every single day going forward.

Caitlyn also had her Plunket visit today. She is doing really well and is on track. She weighs 11.70kg and height is 78cm. We are also entering a whole new phase with Caitlyn. Now that she is almost a year there is a whole new world as far as food is concerned and as soon as we finished the current tin of formula we are then able to move onto normal milk. And of course we have a birthday party to start planning...

Medicines today:
  • Co-trimoxazole - 6.25ml twice a day

2008-01-15

Reaching maintenance sure makes you think

Today Caitlyn had to go for her one vaccination. I was so not looking forward to it. So in a way it was lucky that Sanna was on leave so Terence took Caitlyn in for it. I figured that after 7 months with Bianca, I've had my fair share of painful injections and other uncomfortable things (even though we are nowhere near the end of the treatment). I guess with Bianca it is easier because I can talk to her, explain what is happening, why it is important, but Caitlyn at 10 months wouldn't be able to understand. Bianca and I waited in the car (I'm not quite ready to take Bianca into the doctor's rooms filled with possibly very sick people). We had to get Terence from the train station and then drove straight to the doctors. I sort of expected to hear Caitlyn cry, but nothing. Terence said she cried perhaps for 8 seconds and she was all happy and smiley when they came back to the car. Next one is at 15 months (wonder how I could delegate that one too?)

I can't believe that Caitlyn will be 11 months next week. Then one more month and she is 1 year old already. She is growing up so fast! I'll have to start thinking about her birthday party. For the past little bit she has been sleeping through the whole night. In bed by 7pm, then we get up for her by 6am or 6:30am. I just hope that by writing it here, I have not jinxed it. I will see tonight :-).

It's been a restful week or two. Although still daily fluconozole and co-trimoxazole three times a week - we never have a day without any medicines. But no chemo. And Bianca's hair is slowly but surely busy growing back. It will take a long while before it is noticeable because it is blonde.

Tomorrow we have to go to the hospital for a blood test again. Most likely a finger prick. She doesn't like those, but it is important that she stays used to it as she will still need blood tests for a very very long time, long after the treatment finished. This will be for them to check that her counts are high enough to start maintenance. If so, then we will be back on Friday to start the next part of our journey. This will be the maintenance part and chemo pretty much every single day.

Bianca's been in great spirits. I'm just really hoping that the Dexamethasone especially does not throw her out too much. It has a nasty ability to make the kids sad, depressed, have mood swings, temper tantrums and can even mask an infection and of course it does make them very hungry. She will get Dexamethasone pretty much every single month for 5 days for the rest of her treatment.

The first couple of months will be where we will evaluate how she reacts with this part of the treatment. When she seems energetic and when she might seem down. This will be important to help us make a decision about starting school. If she has too many down times or too many times where her levels are too low or too many infections, then we may decide to wait until she is 6 before starting school.

But one day at a time. Never use the "P" word (planning). And slowly but surely we will get there. Every day that we get through is one day closer to the last day of treatment. Of course this day won't be without its uncertainty or its fear. And in some respects when we get to this point it will almost be like getting to the end of a very long race when all you want to do is collapse because it has been exhausting and non-stop. I'm just hoping that we will have enough positive things to help cushion our "falls" then and so many more bright and positive things to focus on. This will be the day that we will probably stop and really reflect and realise the magnitude of what we went through.

Everything about leukemia has become manageable to us, we cope, we are positive, we find comfort in knowing all about Bianca's treatment plan and I can't think of any other subject I have read about as much as leukemia. And it sounds crazy, but it feels "safe" knowing that we are actively doing something to fight this disease as much as we can.

But sometimes you sort of forget that what we are dealing with is actually quite big. After all leukemia has a very different ring to it than cancer. And sometimes I get quite a shock when I discover and read all the other stories out there. There are just so many of them.

When Bianca seems well and happy it is pretty easy to forget that she is actually really really sick with roughly a 75% / 80% survival rate.

But don't get me wrong. I'm not complaining about our situation. I don't even ask "why us?". I have fully accepted that this is part of life and that this is a road we were destined to walk. But reaching this stage of our treatment, it does sort of make you think a bit about what will lie ahead and what will come and what we have gone through so far. Reaching maintenance feels like we have reached the stage where we can start counting down, one day at a time. When we no longer speak of the end of treatment being 2 years away, but now it is "next year".

It does feel good though, knowing that the road ahead will be much less intense and should be less of an uphill. So I feel really positive about this part of the journey. The whole experience has been such a learning opportunity. And through all of this, Bianca has become my "hero" and my inspiration and through her bravery and her positive attitude she has showed us that there is just so much more to life and that we can truly achieve anything we ever set our mind to. And that we are so much stronger than we sometimes think we are.

So we are ready for whatever may come along now during the remainder of our 2 year treatment process.

But enough ramblings for one day.

Medicines today:
  • Fluconozole - 10 ml at night
  • Co-trimoxazole - 6.25ml twice a day

2008-01-13

Meeting new people

Yesterday we met another couple and their 2 sons in passing. They came from South Africa to New Zealand approximately 2 weeks ago. And their son had a type of cancer 4 years ago (unfortunately I can't remember what type they said it was). So we have a bit in common. We got chatting and today we invited them to come and visit. Bianca just had the best time ever playing with the other kids and it was good to see her smiling and just being carefree like that. It is so hard when her counts are way too low and lucky now with the summer, there are less chance of people being sick and of course with her so nearly on maintenance we have some sense of normality again.

Sanna is also currently on leave so it will be quite tough this week looking after both kids, doing hospital visits and try and do things around the house. But Sanna really deserves this break and we owe her quite a bit of time off at the moment. But yes, she will certainly be missed a lot this week.

So this week we need to be at the hospital on Wednesday for blood test and then if counts are high enough on Friday we will start Maintenance. And if so then Friday will be a very busy day indeed.

Medicines today:
  • Fluconozole - 10 ml at night

2008-01-11

Locum starting soon!

We have a locum starting really soon - in the next few weeks. He will be with us for 6 months. I understand he is highly experienced and from the UK. He will work closely with the other oncologists from Christchurch until they managed to recruit the permanent oncologists.

Today was a nice day. This morning during Caitlyn's nap Bianca and I did some learning activities. We always try and use this time for an activity that Bianca would find interesting, stimulating and challenging. She's been earning some pocket money lately. More just for fun than anything else. Yesterday morning when Terence and I woke up Bianca was in Caitlyn' s room. She heard Caitlyn when she woke up and then kept her amused. So of course she felt very important doing "babysitting". So she "earned" $2.00. So now when we do the learning activity, we use this opportunity to write down what she did and how much she earned. And then she keeps the coins in a little container. She enjoys writing letters and this gives her something interesting to write.

This afternoon Bianca, Caitlyn and I went to the park. I was a bit restricted in playing with Bianca because I still had to look after Caitlyn and of course not everything was suitable for a 10 month old. But it was lots of fun.

So we need to be back at the hospital this coming Wednesday for a blood test and then providing counts are fine we are due to start Maintenance on the Friday. It feels quite unreal to be at this point now. Way back in June when we were diagnosed, it was this point that I desperately wanted to reach. It certainly felt much closer than the end of treatment which will only happen sometime late next year. Wow, another unreal - we can now talk about finishing "next year" as opposed to "in 2 years time".

Caitlyn had a funny new game in the bath tonight. We gave one of the old syringes to the kids to play with in the bath. So Caitlyn took the outside bit and she blew through the one end and of course it made a sound, she was very proud of herself and smiled and clapped her hands. So then she offered it to Daddy to try. Then she proceeded to try all her other bath toys to see if they would make the same sound, which of course they did not, so quite amusing to watch.

Medicines today:
  • Fluconozole - 10 ml at night

2008-01-10

Counts are climbing

Went to the hospital this morning to get a blood test done. They accessed Bianca's port and took a cross-match sample of blood just in case she would have needed any further blood product transfusions. So then we needed to wait. Bianca was so very brave and not even a single tear when they access and de-accessed her port.

Bianca's counts are busy coming up! Haemoglobin sitting at 114, platelets sitting at 68, white Cells sitting at 2.68 and neutrophils sitting at 1.35. So I think we are nearly at Maintenance. I think the neutrophils might be high enough, but I am not sure about the Platelets. But either way Platelets up from 40 so we didn't need any transfusions.

So now we are waiting to hear when we have our next appointment and when Maintenance might start.

Medicines today:
  • Co-trimoxazole (6.25ml twice a day)
  • Fluconozole - 10 ml at night

2008-01-09

Something special all the way from Sweden

Today Bianca and Caitlyn got a really nice surprise all the way from Sweden! Sanna's mom sent the girls each a present. Both girls got the nicest bed socks and Bianca also got the cutest pair of gloves. Thank you so much, Lee! You really made their day! Bianca wore the gloves and socks pretty much the whole evening.

The really cute gloves:

Caitlyn doesn't quite have the hang of opening presents yet and Bianca helped her a bit.

Both girls wearing their new presents:


Here is a little video clip of Bianca saying thank you in Swedish:

video

Today was pretty much just spent at home. Sanna was working only half day as two of her friends from Sweden arrived by bus. They have been touring New Zealand and all of them will set off for the South Island this weekend. I will miss Sanna lots, but it is a well earned break for her. So for the next week and a bit I will be responsible to look after both girls during the day as well as getting Bianca to her hospital appointments so it will be interesting to see how we will manage with Caitlyn who doesn't like sitting still anymore. I can already see who will win that battle...

Tomorrow morning Bianca and I need to be back at the hospital for another blood test to check if her levels are still going down or busy coming up. We cannot start Maintenance until her levels are above a certain level and earlier in the week her neutrophils went down from 0.75 to 0.62 so we are not quite there yet. In the meantime I am enjoying the more flexible routine with no chemo, because once we hit Maintenance there will be an oral chemo Bianca gets every single night for the rest of the 2 years, and with that one she needs to take it 2 hours after supper. So that requires some planning to make sure she doesn't go to bed too late. With that one she has to be awake - you can't really mess around with chemo. I guess by the time we are all done with treatment we will be so used to giving supper by 4pm or 5pm. To think that in my "previous lifetime" usually by 5pm I would wonder what we might want to eat for supper and now I actually have to sit down and plan a bit.

So tomorrow morning Sanna will help out with Caitlyn and then I will take over once I am back from the hospital. I expect they will make us wait for the results, and there is a chance we may need Platelets. But at least that only takes 30 minutes to run once it starts. I hope we won't have to wait too long.

The other day I read on another blog how somebody described having cancer as "waiting". You are always waiting. Waiting to see the doctor, waiting to get test results, waiting for transfusions and medicines to stop running, waiting for the next phase, waiting for levels to recover and waiting to get through a particular phase. Always waiting. If anything this process sure teaches us to have a lot of patience... Nothing wrong with that, but just not always an easy learning process.

So we will see what tomorrow brings in the line of count recovery!

Oh and check out here. This is a site from the NZ Blood Service where you can write in and say thank you to blood donors for donating blood products. Look on the "wall of fame" and you will see Bianca's photo here along with a whole bunch of others. I think this is such a great initiative. So thank you to all of you for donating blood. To date Bianca has had 24 blood product transfusions.

Medicines today:
  • Co-trimoxazole (6.25ml twice a day)
  • Fluconozole - 10 ml at night

2008-01-08

Today was a rainy day. It rained the whole day. And with Bianca's low levels we can't go to any indoor crowded places, so we spent the day at home. The rain is quite welcome because there are dry patches on our grass and this saves me having to water them.

When I suggested to Bianca that she could put on her gum boots and her rain coat and walk in the rain, her whole face lit up. So Sanna turned this into a treasure hunt. Bianca got a letter from the fairies saying that the pirates stole some of their treasure and that they really needed her help. She then went with Sanna to go and find the treasure. Bianca had lots and lots of fun.

Then after Bianca's rest, Bianca went to the movies. Okay, okay, so it was something Sanna set up in the play room. Sanna made some tickets with different movies written on it as well as some snack options. Bianca had a choice of carrots, tomatoes and popcorn (guess which one she chose...). Bianca chose to watch Mary Poppins and then she had to use the coins Sanna made for her to pay for it. Bianca felt quite important.

Overall it was quite a nice day.

Medicines today:
  • Co-trimoxazole (6.25ml twice a day)
  • Fluconozole - 10 ml at night

2008-01-07

A long day at the hospital today

So today was the day we knew were coming.

We went in to the hospital at 09:00 this morning. On the way there Bianca said "we must remember to get some beads because I will get my wiggle put in". In Wellington they give beads as and when things happen so that makes it easy to associate the treatment with the bead. I was worried that we might get stuck in traffic as it was raining and was quite windy (certainly an example of why Wellington is known as the Windy City), but traffic was not too bad. Actually I do not mind the weather so much, it certainly means that the garden would get some much needed water.

We got bloods taken (they decided to take enough blood for a cross match in case we need a transfusion to save some time), then waited for the results.

It came back and Platelets sitting at 40, Haemoglobin sitting at 75 and Neutrophils sitting at around 0.62 or somewhere there (pretty low at the moment). So we got a blood transfusion. I hate this one because it takes 4 hours from when the blood arrives and that feels like the longest wait ever. You sit there and watch it go "drip ... drip ... drip" into the little cannister where the IV line is attached.

We eventually left the hospital just after 17:00 and I must say that Bianca really looked much different and you don't always realise just how pale they are until they have a bit of colour back in their cheeks.

If you ever wonder what 4 hours look like:


Here Bianca is eating lunch and watching a DVD while getting her transfusion:

While we waited Bianca also drew a poster for Jo, the day stay nurse. She drew some "bugs" and then wrote "Wash your hands".


We have to be back at the hospital on Thursday morning for another blood test.

Medicines today:
  • Fluconozole - 10 ml at night

2008-01-06

A change to our blog

There are so many online stories that I have discovered through my various searches on the internet and through the various blogs that are out there. When you first get the diagnosis you feel so incredibly alone.

I remember with us that before Bianca got sick I did not even personally know a single other person who had leukemia. I did not know that there were different types of leukemia and cancers like neuroblastoma was completely foreign to me.

Then you start reading some of the other blogs and journals out there and you discover their stories as well as others who leave the links to their sites in the comments or guest book sections of these blogs.

So I have now put all these links that I found (where people posted the links to their own sites in the comments or guest book of the various blogs and journals) in a site where I am able to put more detail such as the definitions of some of these illnesses and sort it by illness. I find it comforting knowing that I am not walking alone, although I am sad for each and every one of these people who are fighting their challenging battles each and every day. They are all a huge inspiration to us every single day!

You will find the link on the right hand side towards the bottom. Please also keep these people in your prayers and thoughts!

A fun weekend despite low levels

This weekend we were lucky that the weather was pretty good. During the week it was quite windy, so not ideal outside weather. Yesterday the weather was wonderful, but today it was overcast again.

So yesterday we made the most of the weather and decided to go and do something fun outdoors. We can't really go anywhere where there are lots of people or to some of the busy indoors places such as shopping centres. Bianca's levels are quite low at the moment, so we have to minimise the risks.

We decided to go to Staglands which is a great place with lots of different animals and birds that you can feed. On the way there we went to The Blueberry Farm where you can pick your own blueberries. Bianca fell asleep on the way there and so we woke her up and at first she wasn't too happy. But then she soon got into it. It was a little bit of a walk to where you can pick the blueberries. And Bianca and I each had a bucket to put all our berries in which you then take back for them to weigh. Then back in the car Bianca even tried a berry and decided that she wasn't too fond of it.


Then we went to Staglands. Another tranquil place that is quiet and peaceful. Bianca liked feeding the bunnies and we even saw a little fawn. He was gorgeous. Bianca also had great fun feeding the ducks and throwing an apple to one of the pigs. I think Bianca really enjoyed it. Of course our constant companion has become antibacterial alcohol gel which we used on Bianca and our hands so much to make sure that she wouldn't pick up any bugs.

Today was overcast so not great to go anywhere outdoors. And with Bianca's low counts we can't take her to the shops or indoor play areas and the indoor swimming pools are a big big NO! So we just spent the day at home. At one point Bianca and Sanna watched "Fly Away Home" and there was one bit where the Dad went to a meeting and Bianca wanted to know if the little girl went along as well and Sanna said "no, the little girl didn't" and Bianca then asked "is it because her neutrophils were too low?"

Tomorrow morning Bianca and I need to go to the hospital for a blood test and possibly a transfusion or two. She looks pretty pale and has some bruises, so I will prepare for a long day. Bianca told her dad "I'll take my toothbrush just in case I need to sleep at the hospital".

In a way it feels really comforting knowing that Bianca understands a bit about her illness. She certainly doesn't ever get cross if we said that she couldn't go somewhere because of her low levels. But sometimes I do feel a glimpse of sadness that she is only 4 and has to deal with the harsh realities of being sick. But then I look at her and how she just takes it all in her stride, how she keeps finding the fun in everyday. We are really so blessed with all the lessons she teaches us every single day.

So we savour every moment, and we laugh and we find things to be silly about. And one day I don't want Bianca to regret a single moment of this journey, but I want her to look back and feel proud of what she was able to achieve every single day.

Medicines today:
  • Fluconozole - 10 ml at night

2008-01-04

Meeting at the hospital

Thank you to Bridgit Pirie for sharing a website with us. www.startafanclub.co.nz - it is a great site where you can say thank you to blood donors. You can read her brave little boy Peter's story by clicking on the the link on the right towards the bottom.

Had a blood test this afternoon and we did not need any transfusions although Bianca's counts are still low. So we are still just waiting for counts to come up so we can start maintenance. Need to be back on Monday morning to check counts and then possibly transfusion if the counts are still going down.

Had a meeting with Doctor Sullivan and I arrived armed with a list of questions. I was happy to hear that all Bianca's treatment (all of it can be done as outpatient) will be done in Wellington. Thank goodness. Was not in the mood to travel again. For normal admissions such as infections, she will be admitted at Wellington as far as I understand. I do feel more positive after the meeting.

Once on maintenance, all Bianca's home medicines (apart from the co-trimoxazole and fluconozole) will be given in pill form. It sounds as if initially we will go in once a fortnight. We will all have to go for the flu vaccine to prevent us all getting flu. I'm not looking forward to this as I have a bit of a fear of needles (fancy that huh!), wonder if I can claim a bravery bead... :-). But it will be for the best, it is best to try and avoid as many illnesses as possible.

We also discussed school. It is hard getting our head around it now, but once Bianca has been on maintenance for a few months we will know how she tolerates it all, if her neutrophils will stay level and so on. They will adjust her chemo dosages as needed to try and keep them sitting at 1.5. So if all goes well she will start school in June when she turns 5 otherwise we will wait until next year. Bianca is so ready, but I just don't want her to take off too much time from school because I won't want Bianca to miss out on making friends.

Just heard the nicest quote on a movie that I am watching: "why do you try so hard to fit in when you were born to stand out?"

Medicines today:
  • Fluconozole - 10 ml at night

2008-01-03

Waiting for counts to come up

Thank you very much Jared and Caroline Slight for your donation to the Funrazor initiative. I really appreciate it. I must admit it was great fun and I will definitely be participating again this year. Thank you so very much for all the donations that were made to this important cause.

This morning Bianca and I went to the hospital and they took a blood sample. We had to wait until the results came back. We went to the hospital cafeteria and pretty much just waited for a bit. Then we went back and they told us that we didn't need any transfusions today. Bianca's platelets are still low, but since she doesn't have any major treatments coming up, they decided to check the levels again tomorrow. Her haemoglobin came up a bit and that is good. Her neutrophils are quite low and she is neutropenic at the moment so we are avoiding crowded places. We have to be back again tomorrow afternoon to meet up with Doctor Sullivan. Maintenance will start when her counts are high enough.

Medicines today:
  • Fluconozole - 10 ml at night
  • Co-trimoxazole - 6.25 ml twice a day

2008-01-02

Some information on our blog

I've had a couple of people saying they don't know how to leave a comment. Basically if you click on "comments" at the bottom of each post it will take you to a screen with an empty block on the right hand side. You will then be able to type your message. If you are not registered as a blogger, then you can select "anonymous" (remember to put your name in your comment). You will be expected to type some letters and you have to type it the way they appear. This is just so that the computer knows you are a real person and it is not some automatic spam situation. And then it will appear immediately once you post your comment.

Of course you don't have to leave a comment, but we do enjoy reading your comments. And it does let us know that we have your support and that we are not alone.

If you leave a comment and you have your own blog or journal and you don't mind sharing the address, then we would love it if you could put this in your comment. I really enjoy following all the different stories.

You will also note that I put some new links on the right hand side - all about blood and bone marrow donor information. Bianca has had 23 blood product transfusions in the past 6 months (red blood cells and platelets). If you are interested in becoming a donor, then please find out about it and maybe just maybe you might help Bianca and definitely other people like Bianca.

I have also moved all the newspaper links and you are now able to click on a single link (see title "In the news") and it will take you to where I keep record of all relevant newspaper articles that I find and have found.

Do keep well and thank you so much for all the support! We really appreciate it and without your support, this battle would have been so very hard!

A wonderful "nothing" day

This week is feeling pretty confusing. With all the holiday days it doesn't really feel like a Wednesday today and I have to keep reminding myself that tomorrow is Thursday and we will have to go to the hospital for a blood test and possibly a transfusion or two. And I guess it felt a bit funny in a way, in one way everything slows down and becomes more relaxed because it is holiday, but in another life carries on as usual with us, you can't take a break from the medicines every day, you can't really take a break from being observant to see if there are any worrying signs, and of course having a baby means rountine has to carry on as usual - babies don't really like taking holidays either :-) so in one way your body wants to take a break, but in another your mind keeps pushing on ahead. It did feel good to have Terence home for a few days. He is due back at work again tomorrow morning.

Today was another nothing day. The morning was pretty quiet. And then this afternoon we went to visit our good friends Carl and Lisa and their two beautiful daughters. We met them at Bianca's daycare centre at one of their social evenings. Of course I find it quite funny how close our names are "Lea" and "Lisa", "Bianca" and "Brianna" and "Caitlyn" and "Caitlin" (our Caitlyn is 10 months old and their Caitlin is 14 months old). So it was good to see them and we had a BBQ and the kids had lots of fun playing. Of course the two babies didn't really know much about sharing and they kept trying to drink from the other one's cup. Same type of cup, but Caitlin's one is yellow and Caitlyn's one is blue. I mean really can't they just get their colours right? :-) :-). So a couple of times Caitlyn would grab the yellow cup and start drinking and then would get most upset when I take it away and offer the blue one.

Then there was one funny moment which probably would have made a nice moment for America's Funniest Home Videos. Lisa put up a little wooden gate (one of those baby gates) to prevent the babies going through the door. The cat came in and was on the other side of the gate. Caitlyn was sitting on our side of the gate. Bianca was on the cat's side. Bianca is a bit scared of cats and so she freaked out and screamed really loud which then made the cat jump and run (the nearest exit being towards us and away from Bianca), so the cat ran through the gaps in the gate, the gate came loose and was still around the cat's body and it jumped over Caitlyn and of course she screamed because who wouldn't if you suddenly saw a black streak jumping towards you with a big square wooden contraption around it. The cat then managed to free itself from the gate. So there we were with a screaming baby, a bewildered Bianca and the cat hiding behind the TV. Quite traumatic for the kids and the cat, but actually quite funny.

So now tomorrow it is back to work for Terence and Sanna and Bianca and I will set off to hospital early in the morning for a finger prick. I will probably put some Emla cream on her port just in case and then they will probably make us wait for the results. There is a chance that she will possibly need at least a Platelet transfusion, so I'm expecting it to be (but hoping not) a long day for us. And then on Friday we will be back at the hospital to meet the Oncologist who is in Wellington from Christchurch (we don't currently have any Oncologists permanently based in Wellington - a bit of a scary thought in the event of an unplanned visit to hospital). Not too sure at which point we will start maintenance, but I guess it will all depend on counts and stuff. In the meantime it felt good not to have to give the oral chemo at the moment. Usually with the oral chemo we have to wait 2 hours after supper and that does make it hard to plan meals and stuff like that and then for Bianca to go to bed at a reasonable time.

At some point in time Terence and I will be sitting down and discussing the road forward. There is so much uncertainty for us around the whole Wellington situation. At least for me at the moment. This year when Bianca turns 5 in June she is supposed to start school. School will be one of the few things in her life (at least until the end of treatment) that will be stability and I guess in some respects security and comfort. Two years is a very very long time and right now I'm afraid that everything won't work out fine at the Wellington Paediatric Oncology unit. Of course I'm desperately hoping and praying that they will prove me wrong. And they are saying that they are working on it, but it just doesn't always feel as if we are included in the whole picture. Perhaps with everything that has happened I do have a bit of a trust issue and perhaps I'm just at the stage of treatment where I won't just accept what they tell us, I find I am questioning more. So I really do hope they prove me wrong. My worry is that we just start school, Bianca gets used to it and then things don't work out or she misses too much school because they end up expecting us to travel to Christchurch for whatever reason. Right now I really need to decide what would be best for Bianca - emotionally and regarding her healthcare. Of course with the deal between Christchurch and Wellington now agreed, it is expected there will be teething problems, but it is my child's health and emotional well-being that is involved and I find myself fiercely protecting, almost like a tiger "fighting" for her cubs.

To those of you not familiar with the situation at Wellington Hospital, please feel free to refer to the link on the right hand side titled "in the news". If you click on the link it will take you to relevant news articles.

Medicines today:
  • Fluconozole - 10 ml at night
  • Co-trimoxazole - 6.25 ml twice a day

2008-01-01

The first day of a new year

We didn't do much today. Just pretty much relaxed at home. I could think of a million things that needed to be done, but decided to just take it easy today. We decided to put up the inflatable swimming pool that Terence's sister gave us a few years ago. It was a nice sunny day today and so Terence got it all blown up with an air pump and then Bianca helped to carry it outside. Then it was Bianca's special job to put some water in it. We only put a little bit of water inside so that it would not be too deep for Caitlyn. And then the girls had some fun. Caitlyn was really excited, but soon the excitement became a bit much and she decided she had enough.

Bianca has quite a few bruises on her legs and arms and I suspect we will be getting at least Platelets on Thursday. Not really in the mood, but it has to be done. With any luck her counts would have gone up, but it doesn't look very likely at this stage. So we will just see.

Tonight it felt almost strange not having to give the oral chemo. It was our last dose for this phase last night and now we are waiting for them to give us the go-ahead for Maintenance. So no limitations, no waiting 2 hours after supper. Of course we still had some other medicines to give, but we just give those with her food.

Speaking of food, thought I'd share this photo of Caitlyn with you that we took just after her lunch. Anybody for a full body hug? :-).

Here are some photos from the beach the other day:

Medicines today:
  • Fluconozole - 10 ml at night
  • Co-trimoxazole - 6.25 ml twice a day