Day 19 - Delayed Intensification

Bianca was discharged from hospital this morning. We are due back in on Tuesday for a blood test. Of course now we have 3 medicines we will have to give every single night.

Today Bianca made her mark! She participated in the Hyundai Wheels of Courage initiative. Basically cancer children throughout New Zealand has the opportunity to leave their hand prints on a car donated by Hyundai. This car is a symbol of the courage that each of these children have, their brave battles and to show new families that they are not alone. "In March 2008 the car will be auctioned, with 100% of the funds raised used to further the Foundation’s emotional and practical support services for children and families affected by childhood cancer". You can read all about this initiative by clicking here.

Here are some photos that I took today:
The next step will be to add her name and age underneath the hand print.

Another big event happening soon is the annual Funrazor event. This is where people shave off their hair in support of child cancer patients and they raise funds.

Let me tell you that the support we get from the Child Cancer Foundation is absolutely amazing! I am sure all the other families would agree with us. They have helped out with petrol vouchers and meal vouchers, they help out emotionally, they organise support opportunities such as morning teas and so on. The list goes on and on. They are there for all of us at a time where we need lots of emotional support and where many of us have it a bit tougher on the financial side. They employ wonderful people who are there to listen when we need an ear, and sometimes just to be there when we don't want to talk, but just need a bit of company. They help out when our kids are in hospital and we need a break and they are our voice to make sure we have all the facilities we need at the hospital and right now they are playing a huge part in understanding the process to get the 2 new paediatric oncologist.

They asked Terence if he wouldn't mind getting his head shaved for the event, but unfortunately the day before he shaved his hair trying to take the Movember look to the extreme. So he volunteered to collect money tomorrow night before the Wellington Phoenix vs LA Galaxy (featuring David Beckham) soccer game. And he is planning to be at the funrazor event to help out. Click here to read about this event and mark Thursday 6 December 2007 in your diaries. If you would like to register for this event click here.

And of course, to all of you out there who always ask what you can do to help or what we need. I need YOU to sponsor me. Yes, that's right, I will "shave my lid for a kid". Click here to go to my fundraising site. The site allows for electronic donations through a secure system and goes directly to the foundation. I would love to reach my goal and would like it even more if I can go way beyond my goal. Please also send this to your contacts so that we can spread the message and help the Child Cancer Foundation.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Fluconozole - 10ml at night
  • Omeprazole
  • Gentimycin


Day 18 - Delayed Intensification

Today was a better day. Bianca was actually interested to spend some time in the play area playing with play doh and she also wanted to play Candyland and Tumblin Monkeys. I think Tumblin Monkeys is still Bianca's favourite. That's now besides Ned's Head. She completed a 60 piece Winnie-the-Pooh puzzle.

She also had a massive appetite and pretty much finished the bacon and eggs she wanted for lunch.

They are still not too concerned about the possible urine infection and just keeping an eye on it. They are curious as to why she was still growing a "bug" on Wednesday after they gave antibiotics on Monday. So today took another sample and will get some more feedback tomorrow. In the meantime, another night in hospital.

Doctor Anne discussed Bianca's mood and mentioned that some children get quite depressed and sad with the chemo and steroids that she is on in this phase, so what she is going through is pretty normal given the circumstances. Doesn't make it easier though.

Terence didn't get much sleep last night as Bianca woke up twice in the night telling Terence "my tummy is finished sleeping". So it required some convincing to get her to "sleep" a bit longer. Terence always says that he does not mind sleeping at the hospital because he gets a full night sleep which we don't always have with Caitlyn. But last night not so lucky.

Sanna took Caitlyn out walking today and on the way met a lady who looked at Caitlyn and then asked Sanna "Aren't you a bit young to be a mom?" Sanna was listening to her iPod and said "pardon?", then the lady said "aren't you a bit young to be a mom, how old are you?" Sanna thought the lady was a bit rude and then answered "Fifteen" and then the lady said "so you were 14 when you gave birth to her!!!". Sanna just nodded and carried on walking. Sanna figured that since the lady didn't bother to get the facts and was pretty rude, she may as well go along with it and have a bit of fun...

Medicines today:
Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
Fluconozole - 10 ml at night
Gentimycin - IV antibiotics


Day 17 - Delayed Intensification

So first things first, I found out today that they hired a locum starting sometime January 2008, so at least this is a solution to some extent. BUT we still need those 2 permanent oncologists, so keep praying and passing on the message!!

This morning went to the hospital and they informed us that there is some kind of bug "growing" in the sample sent to the lab. They don't know for sure yet what kind of bug, but in the meantime wanted to admit her for the night to observe her. She hasn't been herself lately and we need to make sure that it is just side-effects from the drugs she is taking and not actually as a result of some kind of infection. So tonight Bianca and Terence are staying at the hospital.

It was a long day that dragged on and on and on. Doing nothing is actually quite exhausting. We had to wait until after 17:00 to get a room. Lucky that they recently dedicated a nice big room for the oncology kids coming for day stays and this room has 2 beds and some entertainment so it wasn't too bad. The room is great. Lots of us feel that this is a very positive change that they are making at Ward 18.

So eventually we moved into room 14.

Bianca had a tearful start to the day and one moment she was happy, then sad again and so on. At one point she said to me "I'm not having a good day".

Bianca getting her wiggle put in.

Thank goodness for Kate, the play specialist, she always manages to get some kind of laugh from Bianca. She is absolutely wonderful with the kids!

We saw some more puppies from the SPCA. The cutest puppies! After seeing some puppies the other day, Bianca wanted to get a present for them and so we bought two toys and some treats. Well, they absolutely loved the present, as much as a doggy could like treats and toys. They were so playful. Bianca's face lit up and she was so excited when she saw them and that was a bit of a highlight of her day.
We also saw Nick from More FM at the hospital today. They were taking some photos of some of the kids for an initiative that they are putting together. Bianca was initially a bit grumpy but they managed to get a few nice shots of her.

Recently we realised that it just wasn't practical with only one car and had to look for a second-hand car so that we are not stranded at home each time somebody uses the car and with Bianca being sick, we need to be able to go to the hospital at short notice. So this morning we went to collect the car. The guy at the car place gave Bianca two huge balloons and this cheered her up. So now we have a green car and a black car.

Bianca decided that the green car should be called "Trees" and the black car "Banana". I asked her why the black car is called "banana" and she said "because bananas go black when they get old". So this afternoon Bianca insisted her dad brings her Honey O's (a type of breakfast cereal) and I said that he would first come to the hospital and then get the car to go and get her some Honey O's and she added "with banana" and I said "Oh, so you want some banana as well" (she doesn't really eat banana) and of course I then realised she meant the black car.

Meet "Trees".
Terence went to the Movember party for a short while tonight, but couldn't stay very long as I had Caitlyn with me as well as Bianca. Sanna had a course on tonight and so dropped Caitlyn off on her way to the course. I forgot how challenging and exhausting it can be to have a baby with me at the hospital. It took her a really long time to eventually fall asleep and she was quite fussy. Bianca did not want any noise in her room so I ended up walking up and down the corridor with Caitlyn trying to get her to sleep. He really enjoyed the party (the little bit that he was there) and I think he will definitely participate again next year. A BIG thank you to those of you who sponsored him!!!

Well, it was a long day today and tomorrow morning I will go back to the hospital to take over from Terence. Thank goodness for Sanna, she is a lifesaver and the best decision we made in a long long time.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  • Fluconozole - 10ml at night
  • Gentimycin IV antibiotics


Day 16 - Delayed Intensification

You know, before June (which now feels like a whole other lifetime), we used to pack a jersey, a bottle of water, maybe some snacks, oh and wet wipes - for just in case. Now when we go somewhere (which is mostly to the hospital) we pack a blanket, pillow, bag with clothes, spare clothes, medicines and toiletries, for just in case. Just in case they want to admit us. Because you just don't know and I have learned that if I don't pack, then they usually admit us and then we are totally unprepared.

Just after Bianca was diagnosed we stayed for a week and during that very first week I remember somebody saying to me that it is best to always have a bag packed. I thought "yeah right! My child will then be the first to not spend a single night in hospital apart from the initial admission" Boy, was I wrong! Subsequently we've stayed there so many times that it almost feels as if we have shares in the place.

Of course since then I make sure I am prepared where possible.

So this morning we left home with a whole load of stuff, for just in case. Bianca slept on the way to the hospital.

Got there and we waited because they wanted to get the lab results back. I told Bianca that we would have to put her wiggle in and her face lit up and she said "It won't be sore" and I asked "why not?" and she said "because I'll be brave with the magic cream on". We put Emla on before we left home so that we didn't waste time once we got to the hospital.

Bianca wanted to cut out a picture, I managed to get a little smile and after that she was mostly in a bad mood and at one point insisted that we shouldn't talk anymore and that she wanted the room quiet.

A little smile we managed to get.

For most of it, Bianca was tired and not at all in the mood for anything.

Eventually by approximately 12:00 we left without putting the wiggle in as they weren't too concerned about her. Bianca slept on the way home.

Since she woke up from her afternoon nap, she was in a pretty bad mood again. She showed no interest in food and her feet became all red at the bottom and had white splotches. So there I was phoning the hospital again. At first the nurses said that it would be best to take her in, but then Doctor Anne phoned and after asking a few questions, we decided that we would observe her tonight at home and then tomorrow go to the hospital again.

Tonight Terence needed to go to the shops and Sanna decided to go along and that she would drive. Bianca then said "we'll have to make a big "L" so that Sanna can learn". (Forget about the fact that Sanna already has her driver's license). Just the other day Bianca saw a car in front of us with one of those "Learner Driver" signs in the back window.

I really miss the happy Bianca. It is hard seeing her like this, all down in the dumps, sad and not in the mood to do anything. Can't wait until we get through this phase and hopefully the next phase will be much much better.

Caitlyn is a bit fussy lately as well. I think she is getting impatient as she is trying to stand and of course it doesn't always work the way she wants it to. She gets quite excited when I help her stand against Bianca's little plastic table and then when I put something on the table for her to take you can just see her mind working, trying to figure out how to take it without letting go. We have our own little gym going here at home, she is so very busy. Sanna also had to become a little more inventive during meal times and now she offers some finger foods first and then the normal jar of baby food.

So tomorrow, yet another trip to the hospital...

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  • Fluconozole - 10 ml at night

Blog published

Our blog appears on the Dominion Post website. Click here.

Bianca in the news again

Bianca is in the news again. You can read her article by clicking here.

The fight is still on to keep the Wellington Paediatric Oncology unit and many of us fear the unknown of what might happen after January next year when Doctor Anne leaves. For a very very long time Bianca will still need regular checkups by a paediatric oncologist, so we are not sure how all of this will end up affecting us. And even after Bianca's treatment is completed, the tests and checkups will still continue (but perhaps less frequently).

All I know is that Doctor Anne will be terribly terribly missed, she is one of the best and most professional doctors I have ever dealt with, I am just glad we had her at least for the intensive part of our treatment.

Please keep praying that we are able to find 2 paediatric oncologists.


Day 15 - Delayed Intensification

What a day! Went into hospital this morning for the usual Monday chemo. We got there probably around 9:00 or so. Then they first had to put Bianca's wiggle into her port and they tried to draw blood from it. Nothing. Bianca tried flapping her arms like a chicken, lying back, flapping some more - nothing. It flushed fine (this is where they put fluids through with a syringe). So we decided to wait a little while. Tried again, nothing. Flapping. Nothing. So they decided to give her some or the other anti-clogging drug that is supposed to help with the blood flow. We then had to wait an hour. Bianca decided to lie on the bed for a rest.

After an hour, tried again, nothing, lie back, nothing, flapping, nothing. So we had to do a finger prick. Bianca decided to write the word "Finger Prick" because, as she said, "then I know it is coming". Regardless of this, she still screamed lots and thankfully finger pricks don't take too long. I think she is over needles after last week (but unfortunately she will still do finger pricks for a very very long time going forward). Bianca asked how to spell "Finger Prick" and wrote the letters herself. She battled a little bit with the "G" and the "K".

Of course, typical Murphy's Law, straight after this they managed to pull a little blood from her wiggle. Then they had to start the chemo. First Vincristine, which is just a squirt into the wiggle, then Doxorubicin, which is run through IV line (through her port / wiggle) and this unfortunately takes 2 hours to run. But by then it was 12:00 already.

Eventually by approximately 14:30 we managed to leave the hospital and finally by 15:30 arrived home.

I was hoping we'd be back home by say 13:00 so I could at least still do some things, but the day was pretty much spent at the hospital.

Pretty much the whole day was a grumpy day, and a hungry day. She was constantly asking for food. One moment she was happy and chatting, then the next she was quiet, grumpy, tired or just not in the mood and then in between the constant asking for food. It takes all my energy, but I know I can't get cross with her or impatient because this is the Dexamethasone. Just 6 more days of this Dexamethasone (and then 5 days each month from January for the rest of the 2 year treatment...).

At one point Bianca and Sanna were driving somewhere and suddenly a car pulled out in front of Sanna causing her to slam on breaks, so of course Bianca's baby fell onto the floor. Bianca looked at Sanna, "you have to say you're sorry". So Sanna said "I'm sorry, Baby".

What is quite hard to handle is that Bianca can literally go from being happy to being completely down in the dumps in a matter of minutes.

By 18:00 Bianca complained of a "sore wee" so Terence took her back to the hospital. Not sure exactly what it is, but it is showing some kind of infection so they had to put the Emla cream on (which takes 1 hour to numb the skin), then put the wiggle back in and then after that had to give some IV antibiotics. Bianca did not have to spend the night and now at 22:15 came back.

We need to be back at the hospital tomorrow morning for Doctor Anne to have a look at her. I will take a bag, her pillow and blanket anyway just in case she is admitted.

So much for the things I wanted to do tomorrow...

Medicines today:
Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
Vincristine - Chemo squirted into wiggle
Doxorubicin - Chemo, 2 hours through IV line
Fluconozole - 10ml at night
Gentimycin - IV antibiotic


Day 14 - Delayed Intensification

It is hard to believe that in exactly a month it is Christmas and in exactly a month and 1 week we will enter 2008. In one week it would be exactly 6 months since Bianca was first admitted to hospital. It really feels like a lifetime ago.

In this phase it seems that Bianca gets tired really quickly and she is only able to manage a few activities before she wants to take a rest, so a few times she would fall asleep on the couch and we have to carry her to bed. I'm hopeful that in the next phase the energy levels will pick up.

The remnants of a very rough week last week, not sure how long the bruises of the injections will stay:

Today we didn't do much at all. Apart from getting tired quickly, Bianca seemed happier today. We are not too sure what her counts are like at the moment, and hopefully tomorrow I am able to find out. So for now we are keeping her away from places that are too crowded.

Daddy and Bianca drinking hot chocolate. Bianca didn't finish hers.

Bianca really really wants to go fishing. So I will have to find out about a good place to take a 4 year old fishing where she is likely to be able to catch a fish - any suggestions would be welcome, what I know of fishing is really dangerous. She keeps asking if we could please get her a fishing rod, so I guess that will be one of the things we get pretty soon. We asked her earlier today what would happen if we caught a fish and she answered "then we'd be rich". Later when I asked her again she said "bring it home", I asked her what would happen if we brought the fish home and she answered "you'd cook it".

Tomorrow another day at the hospital for chemo.

Took the cutest photo of Caitlyn:
Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Fluconozole - 10ml at night


Day 13 - Delayed Intensification

My day started at 3:30 with Caitlyn waking up and wanting a bottle. Lately she has been sleeping through the night usually until 6:00 or 6:30 in the morning, so it was a bit of a shock to the system. Then at 4:00 I stumbled back to bed. Then at 5:50 Caitlyn woke up again and at first decided that I would just leave her a little to see whether she would be happy to amuse herself for a while, but then I got Bianca waking me up "Caitlyn is awake, she needs you".

Then Bianca wanted breakfast "I want a hotdog with bread please" (meaning I want cheerio sausages [little cocktail ones] on a slice of bread and the bread folded in half with some tomato sauce in the middle), then "now I want a triangle sandwich with marmite, please" (a slice of bread with vegemite and then cut into small triangles). Next it was "now I would like a ball of cheese please" (basically she likes grated cheese squashed into a ball - I wasn't very successful so it was mostly just grated cheese on her plate).

Having been through 4 nose tube insertions, moments like these make you very happy because if she is interested in eating, then she is more likely to maintain and again weight and less likely to go through another nose tube insertion - which is totally horrible and traumatic to experience. I think we have now reached the bigger appetite stage of the steroids, although her mood is pretty much the same.

Today we went to the Polyhigh Christmas Party. It was her old day care and they held it at Aotea Lagoon, close to where we live. At first the weather was pretty cold and windy and I thought they would cancel, but by the time we got to the venue it was a nice sunny and warm day.

Bianca saw two of her friends, but wasn't too much in the mood for playing. So she ended up sitting with me most of the time. Father Christmas arrived and the two girls each got a little something. Of course Caitlyn had no idea what was happening, but it was quite exciting for Bianca to get something.
It is moments like these that you realise just what Bianca is missing out on. She isn't as close to some of these friends as she used to be and nowadays it takes her a while to get comfortable with her environment and the people before she will feel confident enough. So it has pretty much become isolated to some extent with less risk of infections and hospital stays vs social interaction the way it used to be but with really high risks of infections and extended hospital stays. Either way, the end result is usually isolation. I am hoping that as soon as we are through with the intensive phase and once we are on maintenance that we can start incorporating normal things again like ballet lessons and school when she turns 5 and so on.

Bianca was a bit tired and not too long after this we left for home. Arrived home and Bianca was back on the couch with her pillow and blanket and watching Winnie the Pooh. Eventually she fell asleep and had a bit of a nap.
When she woke up she asked to taste some honey (having seen Winnie the Pooh eat honey), but she didn't want it on a slice of bread so I just put a bit in a teaspoon for her. She then said, "I want a whole pot of honey" and we eventually settled on another teaspoon.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning and 4 tablets at night
  • Fluconozole - 10ml at night


Day 12 - Delayed Intensification

Today was a very grumpy day for Bianca. She told Sanna "I'm not talkative". We kept suggesting activities, but she was only interested in lying on the couch with her blanket and her pillow and at one point asked me to make her a hot water bottle (and it wasn't even very cold today), so she was definitely not herself. I hate it when she is like this and I really miss the days where she was a busy body, always on the go, always interested in a lot of things.

It seems as if the Dexamethasone is making her mostly grumpy this time round. The very first time she went on it she was hungry all the time and drove me nearly mad with her constant asking for food and I was seriously concerned that I would have to get up at 3am to make food for the full 2 years. This time round she has become a little bit more hungry than usual, but not yet as much as the first time. It might still happen, but now looking back it almost seems that the constant eating was easier to manage - I much prefer her hungry and happy than not so hungry and very grumpy and down in the dumps. It will be interesting to see how it will affect her once she is on maintenance and still needs it for 5 days every month.

Got a call from the property manager today. The Aotea block where we live has some rules and stuff that people need to follow, I presume relating to the maintenance of the gardens, the way people build houses and so on. It has a sales office right at the entrance.

So of course they have people who do checks every so often and of course we haven't had time to check up on our lawn. We have somebody that is supposed to come, but they haven't been for a while and the beginning of the week left a message to say they would come soon, but they haven't been as yet and I just did not have time to follow up with them. So it started looking like a jungle.

The property manager got a call from the Aotea management people complaining about our gardens and he then arranged with the people who maintain the vacant sections to come and cut our grass today. "Thank you so much Steve, you were a lifesaver". So this weekend we will now go out and get a lawnmower so that we can do this ourselves and this way we won't have to sit and wait for somebody who doesn't come regularly. We can't really afford to make our property manager upset with us...

I've been meaning to do several tasks that are busy irritating me and one of it was the play area. It was high time to go through and sort out the toys and throw out the ones Bianca really does not play with anymore, so this afternoon I jumped in and did it while Sanna quickly fed Caitlyn her supper. Of course by the time Caitlyn was finished eating I was still busy and the whole floor was still covered in toys as I was going through and sorting out. Mistake #1 - tidy and sort out with a curious 9 month old in the same room. I ended up picking up the same things 10 times. Perhaps I should have waited until tonight after she has gone to bed, but I know if I don't do these things immediately then something will come up or I will feel too tired and so another day will follow and it will still be the same. Our garage with all our boxes can confirm that.

This year is really turning into an "I've been meaning to..." and an "I should've" year.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Fluconozole - 10ml at night


Day 11 - Delayed Intensification

Today Caitlyn is 9 months old. I cannot believe it. Time really flies so very quickly. Caitlyn is a real busy body, she is now pretty much into everything and we now have to think like a baby, see things like a baby and making sure that she can't get into trouble. So it is quite exhausting but lots of fun looking after her.

Bianca had her last injection into her leg today - that is 6 all together. Usually I sit behind her so that I can help hold her still if need be and I could just see her little heart beating - she must have felt so scared, knowing what was about to happen. But it was the very last one. Thank goodness. As usual Bianca cried and felt pretty upset, but calmed down when we got to the room and then she slept during the 3 hour waiting period.

Bianca got to choose a special bravery bead today. It is a unique and very different bead and she chose it before the injection. We knew that afterwards she wouldn't be very interested.

I was quite impressed that she didn't cry when I had to pull off the plaster and Jo removed the wiggle. Usually she hates this part, but today she coped really well.

On a Thursday the SPCA brings some puppies for the children to look at and interact with. It is good for the children and good for the puppies. So Bianca met the most gorgeous puppies. Just yesterday morning Bianca sat next to me on the way to the hospital saying "I wish I had a cat" and I replied that we might get a cat when she is all better (of course she is not allowed to get a cat at the moment) and then she said "I was talking to my baby". We also saw a therapy dog.

For the rest of the day Bianca's moods went up and down. One moment happy, chatting and the next all down in the dumps. It is not fun when it is like this and you know that there is nothing you can do to make it better.

Today I feel quite exhausted. It's been a busy and full-on week and lucky tomorrow will be quiet and we won't need to go to the hospital. Bianca was going to have a play date, but unfortunately Georgia became sick - we'll reschedule at some point in time.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Co-trimoxazole - 6.25ml in the morning, 6.25ml at night
  • Fluconozole - 10ml at night
  • Erwinia injection into leg (this is chemo) and injection 6 of 6


Day 10 - Delayed Intensification

Today was just an ordinary day - I like the ordinary, mostly uneventful days and usually we try and make the most of those days because things can change so quickly. I had to do some cleaning this morning (seeing as Monday and Tuesday were pretty much spent at the hospital).

After Caitlyn's morning nap I decided to take advantage of Bianca's relatively high neutrophils and so we went to North City Shopping Centre close to us. They have a Father Christmas there at the moment and every day he sits on his chair by the most beautiful display of a huge Christmas tree, wrapped presents, and so on and you can then get a photo taken. So Bianca and Caitlyn got to sit on his lap and we managed to get a photo taken. Caitlyn was quite amazed, but then became quite overwhelmed and so I had to take her off pretty quickly. Bianca then had the opportunity to ask Father Christmas for something for Christmas. Of course we've known for a while and (lucky) she hasn't changed her mind as yet.

Bianca became tired really quickly after that and so we went home after getting something to eat.

The rest of the afternoon Bianca wasn't much interested in doing lots of stuff.

Had a question about what type of ALL Bianca has and from what I can see on her treatment plan it says "AALL0331 Standard Risk B - Precursor Acute Lymphoblastic Leukemia", Bianca is classified as "Standard Risk - Average ALL". We are part of a clinical study and it is slightly more intense than just the usual standard treatment for ALL - we are on the IS arm. Pretty much from the start we have been getting weekly treatments and during the intensive period (June to December 2007), most of the weekly treatments are given at hospital. In the previous two phases we also had Mercaptopurine which we had to give over a period of time every single night at home. That was also a chemo drug. And then we also have Dexamethasone which is a steroid and currently two types of antibiotics (the one is every night and the other 3 times a week).

So we run our lives pretty much according to Bianca's medicine schedule. It will feel very very strange one day when there are no more medicines to be given.

Tonight Bianca wanted to play "restaurant" at home. So Daddy had to write a menu with some supper options, she insisted on having her table and chair set up in the play room. I had to be the waiter and Bianca underlined the items she wanted. Terence wrote "pasta pockets, mince, cheese, pumpkin, water, milk, chocolate milk" (Guess which one Bianca did not underline...). I then had to go and tell the "chef" what Bianca wanted to order.

We have enrolled Bianca with The Correspondence School. She is with their Early Childhood Programme. Basically they send us some activities, music, puzzles, books and so on based on her interest and a learning plan and then we do these things with her at home. It is important for me to be able to give her activities that are interesting, challenging and will prepare her for school. One of the books is all about Fairies, and the books says that you leave the fairies some milk and a note "help yourself fairies" and then they come in the night and help themselves and that makes them very happy. So today Bianca asked Sanna to write "help yourself fairies" and then Bianca looked at the words and wrote it on her own piece of paper. She insisted on baking some cupcakes for the fairies and left a glass of milk (and the fairies will be so grateful that they will leave some chocolate coins for her).

Bianca wrote the note herself. She still battles with "S" from time to time, but all the other letters seem to be easy enough. She only writes in capital letters at the moment, but at some point in time she will start being interested in the lower case letters.

Bianca seems to be really interested in words and so she enjoys it if we choose a word and she has to spot it throughout a story i.e. "you".

She also has some other activity books where you have to circle the odd one out or choose one that is different and so on and she is pretty good at getting it right.

Bianca tried to write the "1", "2", "3".

Tomorrow will be a long and difficult day - the next injection. But one good thing - it will be the last one, the very last one. Thank goodness.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  • Fluconozole - 10 ml at night


Day 9 - Delayed Intensification

Difficult day for us. It was injection 5 of 6 today, and by far the most difficult one so far.

This morning Jo phoned to let us know that the chemo was going to arrive late, so I asked her what Bianca's levels were sitting at and the levels were high enough so Bianca visited Daddy at his work when we dropped him off, she was a bit grumpy and didn't want to talk to anybody. Thereafter we quickly went to Junglerama for a quick 30 minute play. It was really early so it was before the crowds arrived. It is hard to remember a time when we didn't have to worry about neutrophils and stuff and could just go without worrying about whether there were crowds of possibly sick people.

Then we went to the hospital. Bianca already had her wiggle in and so they could start the pre-medication early and that saved a bit of time.

And then we needed to go get the medicine. Bianca was fine walking into the treatment room, but then as soon as she sat on the bed started crying - "It will be sore" and all I could say was that I know it would be sore, but that the quicker it happened the quicker it would be over. Bianca then said "I'll stay in hospital" and then I had to say that it didn't matter if she stayed in hospital or if she stayed at home, the injection had to happen and that her "soldiers" needed it to fight the "bugs". She kept stalling, didn't want us to count to 3 and in the end Jo just had to jump in and give the injection. She was really upset and unhappy.

She slept for most of the waiting period afterwards. Thank goodness only one more left.

It is really heartbreaking and to think that when Bianca was really little and had to get her shots, I could never take her and Terence had to take her. I remember crying the one or two times I had to take her and she cried. And here I am now having to sit through injection after injection and having to be strong.

Learned today that the injections are actually called "Erwinia", but it is a different form of the asparaginase. So pretty much the same with the same kind of side-effects.

Bianca wanted to eat pizza for supper and we did not have any pizza bases and so we took some bread, she put some tomato paste on each one, she put some cooked bacon and some cheese and then we put it in the oven and voila!

Bianca decided tonight to play "Library" and made a sign saying "Open" and saying "Closed".

The open sign:

The library...
The "closed" sign...Yesterday Sanna took a walk down to the park with Caitlyn and took a few really nice photos of her:

Medicines today:
  • Dexamethasone (steroid) - 3.5 tablets in the morning, 4 tablets at night
  • Co-trimoxazole (antibiotic) - 6.25 ml in the morning, 6.25 ml at night
  • Fluconozole (antibiotic) - 10 ml at night
  • Erwinia injection (chemo) into the left leg with pre-medication before and waiting period of 3 hours afterwards


Day 8 - Delayed Intensification

Our days of sitting still are officially over! Caitlyn is now able to crawl properly and she is busy learning to pull herself up against things. She is a real busy body and it is quite exhausting "running" after her. And I tried lifting her up - almost like weight lifting and I can maybe manage 3 times - so there you go, my own personal gym... :-).

Today Bianca and I had to go to the hospital for the usual Monday chemo. It was a long one as the one chemo (Doxorubicin) takes 2 hours to run through the IV line. And Bianca went from being happy and a chatterbox, to being quiet and tired by the time we left for home.

Getting Vincristine.
Getting Doxorubicin - it runs for approx. 2 hours through IV line. It is light sensitive, so they have to wrap up the tube.

They decided to keep her "wiggle" in as it is a bit rough on her skin by her port each time we have to put plasters on and take it off again. So seeing as she will be there again tomorrow and on Thursday, it was best to just leave it in today.

I had a big laugh today as Kate bought a new toy - a doctor's kit for the treatment room. It was on special and I just laughed when I read the stuff printed on the box...

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Vincristine - chemo
  • Doxorubicin - chemo
  • Fluconozole - 10 ml at night


Day 7 - Delayed Intensification

I got up at 04:00 for Caitlyn. She woke up with a dirty nappy and I believe if it wasn't for that, then she would have slept through.

Terence woke up at 5:30 with Bianca standing next to his side of the bed (I trained her well...). She was hungry and finished sleeping. So he got up, gave her something to eat and convinced her to go back to bed. That's the problem with Dexamethasone, it makes her hungry - all the time.

At 8:45 Terence and Bianca went to the hospital. I stayed at home with Caitlyn to try and stick to her routine. Got there and they had to do the usual pre-medication and then after that (it must have been about 12:20 they gave the injections into Bianca's legs). Today was the fourth of six injections. So then they had to wait and eventually at 15:30 left the hospital to come back home. I spent most of my day running after Caitlyn, getting her wherever she crawls and bringing her back to the play room.

At one point I decided to close the toilet and bathroom doors as they seem to be a huge attraction to Caitlyn when she crawls down the corridor. What I didn't realise was that somebody pressed the locking button on the inside of the toilet door. You lock the door by pressing a little button that is just next to the handle, so of course, it would have been easy for somebody to press it when they opened the door from the inside. So when I closed it it was locked and no way to open the door. Lucky the window was open and so when Terence and Bianca came back, Bianca helped by climbing through the window and opening the door from the inside.

As usual after these injections, Bianca was pretty tired tonight and wasn't much interested in doing anything.

Tomorrow will be another long day with her usual Monday chemo.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Fluconozole - 10ml at night
  • Erwinia - chemo injections into both legs at the same time

Day 6 - Delayed Intensification

The weather was really nice. We went to Scorching Bay and although we didn't swim, enjoyed being at the beach.

Caitlyn was quite fascinated by the sand and we had a bit of a battle with her sun hat. I put it on and she immediately pulls it off, I put it back on and she pulls it off. I took Caitlyn and let her stand with her feet in the water and she enjoyed it quite a bit.

Bianca didn't swim, but she had fun looking for things to pick up and "plant" in the sand.

Overall, it was just a nice relaxing day at the beach.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Fluconozole - 10ml at night


Day 5 - Delayed Intensification

Today Bianca went for her third injection. We only managed to put the ice for a short time on her legs, but then she complained that it was too cold and insisted I take the ice away. Of course she screamed and I must admit it is not getting any easier to watch her go through. Bianca is really good and does not fight back, she just sits there and scream. Then when we went back to the room, she slept for most of the waiting period. The nice thing though is that it makes the waiting period easier.

The next one will be on Sunday and that will be Terence's turn and I will stay home with Caitlyn.
The appetite started kicking in and Bianca keeps asking for things to eat. At the moment she wants KFC and calls it Bone Chicken and then she wants picnics so we have to put stuff out on plates for her as if it is a picnic. We expected the bigger appetite and we are expecting that she will be picking up weight. It is one of the side effects of dexamethasone.

Bianca has a toy that is almost like a plastic suitcase. The lid fell off, but on the inside there is a little button in the shape of a star that when you turn it it plays music. Caitlyn loves this toy and she loves turning the music on. Somehow she figured out how it worked. This morning she turned it on and Sanna wanted to see what she would do, so she turned it off, Caitlyn immediately turned it back on and so it carried on. Sanna turned it off, Caitlyn turned it on and each time Caitlyn would look at Sanna almost as if asking "what do you think you are doing?"

We managed to catch a bit of a video clip of it. We thought it was so funny.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Fluconozole - 10 ml at night
  • Erwinia - chemo injected into both legs at the same time (ouch!!!)


Day 4 - Delayed Intensification

Today started off with Bianca not much in the mood and a bit grumpy, but she perked up around mid-morning. So it looks like it will be an okay day for us. Bianca drew 2 pictures and then helped me to hang out some washing. She felt very proud of herself. Then she wanted to take some photos with the digital camera and took a photo of me carrying washing, the door, Mommy and the lounge and her drawings. She then decided to have a feast and this seems to be the latest thing. A feast involves us putting her meal on her little table on different plates and then she has a "feast". So as she was waiting for her pasta, she then proceeded to say Grace "thank you for my Mommy's big tummy. Thank you for my Mommy". Perhaps time for that diet and gym...

Caitlyn learned a habit of spitting / blowing raspberries when you give her food. She thinks she is so very cute and it is sometimes hard keeping a straight face. But we know if we don't stop it now, it will probably never stop and it is not much fun being showered in baby food. So now Sanna ends up saying "no" probably about 10 times during a meal. We watched Charlie and the Chocolate Factory last night and then watched the second DVD where they show how the movie was made and in the bit where they discuss how they trained the squirrels they say that it took them about 2000 repetitions to get the squirrels to do what they wanted them to do. So Sanna has a few more repetitions to go... :-). Caitlyn is able to stand a few moments if you put her into a standing position against something.

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  • Fluconozole - 10ml at night