Random ramblings (or something like that)

I'm not too sure what I should write about.

Things here are just fairly ordinary, with not much to report at the moment. Terence commented this morning how it feels a bit strange not to have to do daily medicines anymore. Sometimes we tease Bianca and we'll say "Bianca, come get your medicines" and she'll start coming and then stop, roll her eyes and say "I don't need medicines anymore". I think at school it will be quite different for them too because since Bianca started school, her routine has always been to go to the office at around 1pm to get her Acyclovir tablet and suddenly she won't have to do this anymore. I told Bianca she could still go and say hello to Mrs Stewart in the office and perhaps say something like "I'm not here for my medicines". Our next hospital appointment is the end of October and until then we try hard not to think about medical stuff.

This week we've started toilet training Caitlyn and so far so good. During the day (except for nap time) she is undies and she makes maybe 1 accident a day. I think that is pretty good. She is growing up so fast.

Yesterday I realised how very small this world really is and I discovered my Std 8 (probably the same as Year 10) English teacher is living on the North Shore where we are living and he works at one of the schools that we used to live close to. I do feel ancient though when I start working out how many years ago he was my teacher, so I try hard not to think about that.

Sadly yesterday, I discovered a news article and read that the one teacher from my high school days was shot and killed by another teacher at the school he worked. Mr Liebenberg wasn't one of my teachers, but he was well-liked when I was at school and I must say that I just felt so incredibly sad to read that he passed away. It is also so sad that he was killed this way. It is sad that the other teacher reached a point where this was his solution. I can't help wondering when the point of no-return happened. Was it when the other teacher woke up? Was it when they had their meeting? Was Mr Liebenberg scared? Did he realise what was about to happen? My heart really goes out to their families who must have so many questions. Such great sadness, such a huge tragedy.

And then some of you may have read or heard about the earthquake and tsunami that hit Samoa. It makes you realise how very quick things like these can happen and I'm just so sad for the people who have been affected with these tragedies. New Zealand was warned to stay away from the beaches with some areas asked to move inland (which of course encouraged a lot of people to actually go to the beach to see if they could see anything). We have not been affected, but the risk is there. The Red Cross set up a site for donations to help the people in Samoa. You can click here for it. To make a secure online donation you can click here. For another way to donate, click here.

First hospital visit after end of treatment

17 days after our last chemo day, we've had our first monthly hospital visit and blood test (and of course the IVIG that we are still scheduled to have for the next 3 months). It was a looooooong day. Arrived at the hospital at 1:20pm for Bianca's blood test, then waited at the Ronald McDonald room for her appointment with her doctor at 2:20pm. Doctor ran probably around 10 - 15 minutes late, but no complaints. And he was thoroughly pleased with Bianca's blood results. In fact he was actually quite surprised how quick her lymphocytes recovered. On the 13th of September they were 0.23 and today they are sitting at 4.4 (it can sometimes take up to 6 months to recover properly) and this means (drum roll please...) - no more daily acyclovir tablets and no more weekly co-trimoxazole. That means that apart from the monthly IVIG (for the next 3 months) Bianca is effectively done with medicines.

Bianca's platelets are 210 (up from 93), haemoglobin 135 (up from 93) and neutrophils 2.82 (up from 0.76). The doctor mentioned that he doesn't think Bianca will ever become neutropenic again (what an unreal thought).

Of course all this does not mean Bianca suddenly doesn't have any risks against things like chicken pox and measles and so on. It is only once she reaches 6 months off treatment that we can be sure that she recovered completely from being on chemo, it is only then that we will do the blood test to see which of Bianca's immunisations she'll need to get again (I'm praying and hoping that we won't have to repeat them all).

And then it was time to be accessed and then we waited, and we waited and finally the IVIG arrived from the blood bank around 16:45 and we managed to leave at 18:45. It is going to feel so weird when in a few months from now we won't have the IVIG anymore and our visit will be much quicker.

So right now as you can gather, Bianca is doing great. She does have a rash on parts of her arms, legs, tummy, but the doctor feels confident this is likely just as a result of stopping chemo and as long as it doesn't start itching we won't be putting anything on it.

The mysterious case of the apostrophe

When I was still at school, some of my English teachers really focused a lot on the apostrophe rule. So since then the apostrophe rule is something I always notice and I always seem to notice when people use it incorrectly or forget to use it when they should saying things like "Monday's, Tuesday's" and so on. I've even seen some employment agents say things like "holiday's" in their advertisements - and they are employment agents!

I will never forget (many years ago) when we still lived in South Africa we had a domestic worker and she sent her son to the primary school right next to where we stayed. Because we sometimes helped out with the school fees, she often brought his report card to show to us. The one year I was absolutely shocked to find his teacher wrote as explanation why some of his marks were a bit low: "he play's too much in class, he pay's little attention, he talk's too much in class". So here she was criticising him because his English marks (amongst others) were too low and yet, she made three grammatical errors. Three! And she is the teacher! I wrote a letter of complaint to the headmaster saying how she had absolutely no right criticising him if she was this terrible with her English. He had some or the other weak excuse defending her, but since that day I vowed that my kids would never see the inside of that school.

Now I'm by no means perfect with my grammar - after all English is my second language, but I think I do okay. And so on Friday, just after Bianca's Award Assembly, Terence, Caitlyn and I went to the foodcourt for lunch. As we sat there I noticed this screen at the movies, you know one of those that scroll the words along and they were advertising some of the upcoming features and this is what I read:

MICHAEL JACKSON 'THIS IS IT' IS COMING!!!!!!!!! THE PREMIER OF THE WORLDS MOST ANTICIPATED FEATURE. THIS YEAR MICHAEL JACKSON 'THIS IS IT' WILL MAKE ITS WORLD WIDE RELEASE ON OCTOBER 29TH. ADVANCED TICKET SALES FROM SEPTEMBER 27TH....... THIS WILL BE SHOWING FOR ONLY 2 WEEKS SO DON'T MISS OUT!!!!! TO ALL YOU TEE BIRD'S AND PINK LADIE'S OUT THERE.... WHY ITS GREASE LIGHTING!!!! GREASE IS COMING BACK TO THE BIG SCREEN ON OCTOBER 4TH FOR ONLY ONE DAY.... ALL TICKETS ONLY $10 AND ON SALE NOW.

I couldn't help noticing their particular use of (or lack of) the apostrophe. Can you spot the mistakes?

Not quite how I thought it would be

You know whenever another family reached the end of their treatment for some or the other form of childhood cancer I would always ask "so does it feel nice to be done with chemo?" "Not to have to give tablets anymore?" "Does it feel scary in any way?", but now that we are here, it seems less dramatic than I thought it would be. We sort of quietly slipped into this new routine. It doesn't really feel as if something is missing (which I thought I would feel if suddenly after all this time we suddenly won't have to give chemo anymore), perhaps this would be because Bianca still has all her other medicines that we need to give - her acyclovir tablets every day and her co-trimoxazole every weekend and for the first 3 months she'll still get her IVIG transfusion.

It also doesn't feel scary at the moment, to not have the "safety net" of the treatment. Okay fair enough Bianca hasn't had any funny looking bruises just yet that would make me wonder "hmmm is that only a bruise or does it mean something different?" Maybe because we've had to adjust on short notice so often since Bianca was diagnosed, it made the transition into the "after chemo" part of our journey a bit simpler. Also, I guess if Bianca went straight from intensive therapy to being done instead of the way it was on maintenance where despite being on chemo she was at home for most of the time, she even managed school, perhaps because of being on maintenance the end of treatment felt less dramatic and not quite as different to before.

Perhaps the scary part hasn't come yet because throughout Bianca's treatment we've had to adopt a "you can't choose what happens in life, but you can choose how you handle it" kind of attitude. We've never allowed the "what ifs" to take hold of us and invade our minds. But perhaps the scary part will still come. Perhaps once we start finishing off some of these other normal medicines. Who knows?

It is just so different to how I imagined it would be. But I'm super-glad though that we reached this part of our journey!

Some of the things that get to me

There are a couple of things in life that really get to me. One of those things would be when parents dress up their little girls like mini adults. And I've seen 6 and 7 year olds all dressed up as if they are out to get attention. Or young girls with their faces plastered with make-up. And I'm not talking "Jane* was playing with the toy make-up set she got for Christmas", I'm talking carefully and deliberately applied make-up when they go to school, the shops and wherever, like this 10 year old who until recently was only 9 and yet when you look at photos of her (in her school clothes) or you see her at school with the make-up all over her face, I can't help wondering why kids can't just be kids anymore. Really? Does she actually need to wear make-up to school? Although I think she must be getting it from her mom because her mom is really into her make-up and always has it plastered all over her face. I'm sure that if I ever have to see this mom out in public without any make-up (which really is unlikely) I won't recognise this person at all. Now there is nothing wrong with make-up, but surely kids who are not quite teenagers yet don't always have to wear make-up. Surely kids should be allowed to be kids just for a little while because they have their whole lives ahead of them to be adults. But maybe I'm just terribly old fashioned. (*Obviously not referring to anybody I know, I don't actually know a little girl named Jane)

Smoking is another one that really gets to me, but I won't be writing about this one tonight as I wrote about this here just the other day.

The other thing that I really really don't get is this whole drink-driving thing. And recent news articles (NZ Herald, Stuff) made me feel so disgusted at this person who made a deliberate decision to drink until she was horribly drunk (she was nearly twice the legal limit), then got into her car driving so bad that another motorist was following her and was about to phone the police about it, when she crashed into a cyclist and instantly killed him. This cyclist didn't even have a chance to try and get out of the way. He simply had no chance. He was a husband, a dad to a 10 week old who will grow up not ever knowing her dad. I don't care that this idiot person is 70. I don't care that this person had a drinking problem - none of that should be excuses. This was no accident, this was murder as far as I'm concerned. I hope they will make an example of this person, so that the message could be very clear - you can kill people when you drink and drive and when you kill them it is no different to anybody out there who murder other people. I hope this person will be haunted for the rest of her life because it is too late to fix it, she destroyed other people's lives, she robbed a little baby of her dad and that is something she can never give back to these people. All of this could have been avoided if she did not make that decision to drink and then drive. But what a pity that despite this there are so many people out there who will have the same attitude as this person probably had "oh it will never happen to me". I wonder what it will take for people to catch a wake-up call about these things...

Life on the homefront

Not much happening on the homefront. I must say it didn't take all that long to get used to our new routine. I now start cooking a little later at night, I haven't had the urge to time Bianca again, and so we are just living life. From time to time during treatment I thought that reaching the end of treatment, I'd suddenly feel this overwhelming fear and worry because suddenly we're off treatment and the "safety net" of treatment suddenly disappeared, but so far I haven't felt that way at all. Maybe it is still coming, maybe it won't come simply because I've never allowed the "what ifs" to take over. Maybe because Bianca still has daily medicines that makes it feel not quite real that we're off treatment. Who knows? Either way, we are not complaining. Today I phoned to see if Bianca's blood test results came back after the test we did on Friday at the new Labtests. I've read some not-so-good stories in the news about them so was wondering if it would become frustrating dealing with them, but today I was pleasantly surprised to find Bianca's blood results were waiting at the hospital. Her neutrophils came up to 1.43 or something like that, so they are definitely coming up which is great because that means that Bianca has some fighting ability against Caitlyn's bugs.

The only frustration that remains is Bianca's eating. She is quite willing (I won't go so far as to say happy) to eat what we make her and she knows it is not really negotiable anymore, but boy does she eat slowly. An hour, hour and a half later she'll still sit with her plate of food half full. We simply don't know how to convince her to eat quicker. So it is a bit frustrating for both Terence and I at the moment.

We've found a way to give Caitlyn her eye drops - just wait until she is fast asleep. We did it late this afternoon when she fell asleep in the car and she didn't even wake up when Terence quietly put the eye drops into her eyes - brilliant! Of course the same new strategy doesn't work so well with the nose spray and she hates that as much as ever. I managed one nosteril and then she chased me out of her room. Oh well, I guess tomorrow we are back at holding her down which I must say is one of the most traumatic things to witness and be part of, to watch her struggle and fight like that and then finally just crying... Not fun at all, let me tell you. Just a pity that she doesn't quite grasp the concept "the medicines will make you feel better".

The verdict...

According to the doctor Caitlyn is full of bugs. But to go back a little...

Last night was pretty bad. Caitlyn woke up pretty much every hour, so this morning I was so tired and Terence let me sleep in a little before they woke me up with breakfast in bed and birthday presents which the kids helped me open. A big thank you for all the birthday wishes, they really made my day!

At 11:45 we had a doctor appointment and I got there and of course there is this big note on the door saying that if you are coughing, sneezing and / or have other cold / flu symptoms they expect everybody to wear a mask, use hand gel and stand behind a red line to speak to the receptionist. Got inside and no red line, but I asked for a mask and got some hand gel to use. Caitlyn was so upset about the mask and kept pulling it off and I just kept praying she wouldn't be coughing during that time (which thankfully she didn't). She didn't mind the doctor taking her temperature, but got upset when he listened to her heart, tried to look inside her ears and at her throat, but was happier when he offered her a jelly bean. (Those things are magic let me tell you). Turned out both her ears are infected, she has a blocked nose, has an eye infection and as the doctor said "she's full of bugs". He thought that perhaps she might have mild asthma hence the coughing especially at night (although Terence and I aren't convinced she really does have asthma). So then the nurse had to show us how to use the little asthma pump, spacer and little mask (and as expected she freaked out, big time).

Then we went to the shopping centre to go to the pharmacy to get all Caitlyn's medicines and the whole time we were there, Caitlyn used the mask to "catch her coughs" and at one point even asked that I put it on her face properly. I guess it is alright as long as it is on her terms and nobody else's - typical 2 year old...

And tonight when we had to do the first set of medicines, she was all happy to take her antibiotic for her ears, she was happy to let us use the asthma pump, spacer and mask (of course with the promise of a treat if she took her medicines properly), but absolutely hated the eye drops and hates the nose spray even more (Sigh!!!) We are so used to Bianca willingly taking whatever medicines and treatments she needs, that it is quite something to have a child not used to all those things and actually "fighting" about it. I have forgotten how stressful it can be trying to convince a child why it is important that they take all their medicines, and just thinking that tomorrow I might very well have to hold her down - yeah, not very much looking forward to that let me tell you.

Bug alert at our house

Yesterday we spent a nice relaxing morning at the Mt Albert Aquatic Centre and that was so much fun. We have not been to an acquatic centre for a long long time and it was so relaxing and the kids had the best time ever. The day was perfect for it as it was raining and overcast and just simply not an outdoorsy type of day, so the indoor option was the best.

Later after we came home Caitlyn started getting some pretty bad cold symptoms and last night was not fun at all as she coughed and woke up so many times, so each time I would have to get up, walk to her room, give her a sip of water and then sing Sleepy Time Song (I feel quite proud that the kids like my Sleepy Time Song, which I made up when Bianca was just very little still, it is pretty cool that they actually ask for it). Then just as I fell asleep she would cough again and so the night would continue.

Today you could just hear in Caitlyn's voice, she sounded so blocked up and her nose runs and it looks like she might be getting some conjunctivitis too. Urggh, can't remember when last Caitlyn felt this sick, but I'm sure not used to it anymore and just want her to get better now.

But despite how Caitlyn might be feeling, she had moments today where she made us laugh like when I asked her to come and help me with supper and she declared "I too young" and then later we tried to convince her to try wearing some undies and again "I too young to wear undies". Not easy keeping a straight face let me tell you.

This afternoon Bianca and Terence went to watch a movie called Shorts as part of a fundraising initiative by the Make a Wish Foundation. Caitlyn and I stayed at home and afterwards Terence said they showed a short commercial for Make a Wish and 2 of Bianca's Make a Wish photos are in the commercial and she'll have a page in the new calendar. That is so cool!

Here's hoping tonight goes better than last night.

The end of one chapter, the start of another

And so we reached the end of this particular chapter. I wouldn't say the end of our journey, because this won't really ever finish. It will always be part of us, it shaped us and sent us in a direction we never thought about before it all started. And let's be honest, life in itself is a journey and our experiences and roads that we walk are all part of this journey. Sometimes the road isn't exactly as you thought and hoped, but whilst you are there, you may as well take time and look around and make the best of it.

Today we are finally closing off this chapter. I know Bianca still has her port. I know she still requires other regular usual medicines, but the chemo part is finished (hopefully forever) and so we wanted to find a way to celebrate this milestone. Something special, something significant, something that will remind us of how very strong Bianca was during all of this and as a family, how strong we managed to stay regardless of the challenges. I wanted something to remind us that despite what life might throw at us, we are able to stand tall and stay strong.

Today we planted a tree at Bianca's school - an evergreen magnolia tree. It is 6 years old, just like Bianca and years from now I hope that she will take her children and show them her tree. We recently took Bianca to choose her special tree. She calls it her "Bianca Tree".

Yesterday Bianca and her teacher made the most beautiful programme for today.

There were some very special speeches from Bianca's headmistress (Miss Bowden) and teachers

Miss Hilton, Bianca's Year zero teacher, read the most beautiful poem that I just have to share with you:

The Tree of Life

This tree
Is not only a tree
It is a friendly tree,
that is always watching over you.
This tree
Is not only a tree
It is a magical tree.
That makes miracles happen,
Hopes become realities,
And nevers become alwayses.
This tree
Is not only a tree,
It is where everything started
It is the tree of life.
(Mia Ocean)

Three of Bianca's friends shared some special words with Bianca.

And then Bianca had her first public speaking engagement.

Terence shared a few thoughts with the group and the significance of this tree.

And then it was time to plant the tree. Bianca started and soon after her friends all helped her plant this tree.

During the planting Bianca dropped a little glass jar with some special messages into the hole, and in many many years from now she could dig it up and remember this moment again.

This is a living monument to our very brave and courageous daughter who achieved and endured so much during the past 830 days, who despite what she faced, always brightened our days with her smile. The school was the perfect setting because the school was the first "normal" experience Bianca had since diagnosis. The teachers and children all accepted Bianca just the way she was, and treated her just like they would anybody else, and so it felt right to share this with her teachers and friends who helped us keep things normal.

I want to take this opportunity to say a big big thank you to The North Harbour Big Tree company for the wonderful support in helping us plant this tree. They arrived bright and early to help dig the hole and wow, I've never seen anybody work so fast.

I also want to say a big big thank you to Oteha Valley School - to the Board of Trustees, the headmistress, the staff and all the relevant children who all helped make today so very very special.

Then later at assembly Bianca won both the "Busy Bee" floating trophy as well as the Oteha Star certificate for the way she has always done her very best despite being sick, despite dealing with medicines, despite having to go to hospital for treatment on a regular basis and the school thought she is a true example and inspiration to everybody else. We are so very proud!

And so we close off this chapter and we start a new chapter as part of our journey and we are filled with hope and we know that whatever may lie around the corner, we are ready, after all, just look how much we achieved and how strong we have become! I would like to take this opportunity to say thank you to all of you for being there for us, for following our story and sharing this journey with us. A big thank you from the four of us. We hope you will continue popping into this blog and share our new chapter with us!

What a lovely forecast

Isn't this wonderful?

(Reference: Metvuw)

It seems that the forecast is showing a really nice day tomorrow with no rain predicted. So watch the space. Tomorrow morning at 10am (NZ time) will be a very exciting moment for us, we can hardly wait.

But back to today. Things are going well. Slowly but surely we are getting used to the new routine and I must say it is actually quite nice not to have to prepare supper at 4pm, but we can make supper at 5pm or even 6pm if we wanted to. Bianca still has this persistent cough (and thankfully it has not prevented her from going to school) and Caitlyn has the odd cough too which is frustrating from time to time (especially at night) and I do hope that this will pass pretty quickly.

Tomorrow some time we are meant to take Bianca for a blood test at one of the community labs as her oncologist really just wants to see that her levels are still increasing. I'm a bit wary actually because it is with the new Labtests (all the Auckland community labs have recently changed over) and so far they have not been the best according to some of the experiences people have had, so it will be interesting to see what happens. I really do hope they don't mess up.

The routines we had

Last night around 6pm I started getting anxious and kept glancing at the clock to see if Bianca was still eating or finished eating. Usually by that time we need her to be finished eating so that we could time her for her chemo and so that she doesn't go to bed too late and I kept wanting to ask her to stop eating, I actually had to stop myself from saying it, several times. I had to keep reminding myself that it really didn't matter that she wasn't finished yet. There really was no rush. We don't have to time her anymore. It feels weird and I expect it will take a little while before we get used to it. After all it's been our routine for so long, so it's understandable that it will take a little time.

Bianca didn't go to school today as she has a bit of a persistent cough, so we'll see how she feels tomorrow morning. Hopefully it goes away soon!

Other than that, things are great this side!

No time like the present

It ended up being the most magnificent day today.

We woke up to a beautiful sunny day. I arrived at the hospital armed with all the stuff I would need for an overnight stay and then probably an hour after Terence and Caitlyn left, our doctor came past declaring that he really thought she looked too well to stay in hospital. Not only that, but her blood cultures came back negative, she's had no fevers and her counts are busy coming up. Her neutrophils are sitting around 0.74. And so he charted an antibiotic that would last for 24 hours whereafter we had permission to leave. So I quickly sent a message to Terence to come back for us and it is always then that you suddenly wonder why you end up taking so much stuff to the hospital.

We arrived home around 3:30pm, quickly dropped off all our stuff and decided that there really was no time like the present. Bianca knew that she was going to get something special, but more than that she really didn't know and you should have seen her face light up when we stopped in front of the bicycle shop and told her that she would be able to choose a brand new bike. Just before we left we quickly put Caitlyn's new tricycle in the car and so when we arrived at the bicycle shop Terence took it out so that Caitlyn could "choose it".

And then we took advantage of the great weather and took the girls so they could ride their bikes at Bianca's school. It was simply wonderful to see them having so much fun.

I have to say I'm so used to looking at the clock and I have to keep reminding myself that we can now eat supper like other people do, we don't have to prepare supper at 4pm, we don't have to time Bianca. It is a weird, but wonderful feeling though!

Now weather-permitting, we are all on track for Friday the 18th, I'm so glad Bianca is discharged from hospital!

End of Treatment

And now for the post that should have happened last night, the 11th of September, to mark the end of treatment (even though Bianca ended up taking her last chemo tablet on the 10th and the doctor recons we can do a re-enactment of the last chemo tablet with a placebo and take a photo of that).

And even though we are stuck in hospital and our end of treatment plans had to be put on hold, Bianca still added the most important bead of all to her collection, a Purple Heart - this is a very special end-of-treatment bead.

Stringing this bead is serious business:

Reaching the 11th of September is such an incredible and wonderful milestone.

It was 830 days ago that I arrived at the hospital and Terence stopped me before I could enter Bianca's room and he told me that the doctor said Bianca had leukemia. It was 830 days ago that I stood in the corridor, holding Caitlyn in my arms, staring at the wall wishing I would not cry as the tears streamed down my face. It was 830 days ago that I composed myself before I entered Bianca's room and made small-talk about the show she was watching, her room, and trying to keep things normal. It was 830 days ago that our lives changed.

And yes, there are 830 paua shell pieces in this photo to represent every single day from diagnosis to last day of chemo treatment.

During the last 830 days, Bianca collected 1,322 beads. We simply love her courage beads. It is simply the best programme ever and looking at it, it tells a story of courage and bravery and of amazing achievements.

These beads represent the different procedures and treatments that Bianca received since diagnosis. She has a few very special beads for specific achievements and these are not included in our total of 1,322, which are made up as follows:

652 days of chemo (some IV chemo, some chemo tablets, some that are done as sub-cut into her legs, some that have gone into her spine and some that have been injected into her leg muscles).

142 injections, port accesses and finger pricks

47 blood product transfusions (red blood cells, platelets and IVIG)

43 clinic visits

4 nasal gastric tubes. Whilst they were never pleasant to put in (actually it was probably one of the most traumatic things to do), Bianca always recovered pretty quickly and became her smiley self again.

4 times that Bianca lost her hair or that it thinned significantly

20 lumbar punctures (which were done in the operating theatre and under general anaesthetic)

73 different tests such as CT scan, Echo, X-Ray, nose swabs, and so on

117 nights spent in hospital. These were all for various infections Bianca developed during her treatment. This also indicates the number of nights we as a family spent apart where one of us stayed with Bianca in hospital and the other stayed at home with Caitlyn.

112 days where she was neutropenic, had a fever or had to be isolated

1 surgery to insert Bianca's port. This photo was taken the very first time Bianca went into theatre, it was on this day that she got her port and got her very first chemo.

1 port (some kids go through more than 1 port when it stops working or becomes infected, but we were lucky and have managed with only 1 port). Here is a photo to show what it looks like. It sits under the skin, it isn't sore, it doesn't irritate Bianca and before we access it we put Emla cream on to numb the skin.

16 dressing changes

45 days of IV antibiotics (I didn't count this from the start, and I have a feeling we have missed some days)

4 bone marrow aspirates which were done in the operating theatre and under general anaesthetic. Here Bianca is waiting in theatre just before getting her "sleeping medicine".

41 different and unusual things that happened during her chemo treatment including times she was on oxygen

During this time Bianca also had 151 days (302 doses) of steroids which often increased her appetite, made her feel sad or grumpy and made her become all bloaty. It also resulted in a lot of cravings. It is a pity we don't have a bead to represent steroids as it is such a significant aspect of our treatment.

We've had a few challenges throughout our journey, including when they discovered Bianca had kidney stones. It baffled them because you don't often find a 4 year old with kidney stones.

Bianca also developed a bronchospasm that required immediate assistance. Initially she wasn't very responsive, but they sorted it out pretty quickly.

Bianca had an unknown viral infection and ended up in hospital for 34 nights, a lot of that time on oxygen and she was in isolation. To this date we still don't know what the virus was, but we suspect it was whooping cough.

Bianca developed a severe allergic reaction to one of her chemo injections (the Peg shot) which required immediate assistance. As a result, she wasn't able to get this specific drug again, but instead had to get a different version - the Erwinia which resulted in 6 injections, one every second day.

At the start of our maintenance Bianca developed shingles in her face and as a result ended up getting daily Acyclovir tablets since then to try and prevent it from happening again whilst on treatment.

And throughout all of this, the one thing that clearly stood out from all this, is one amazing little girl and her beautiful smile who simply loves life and lives for now.

Bianca, you make us so proud. We've learned so much from you and you are our inspiration and our hero!