Last night tonight!!!

A big thank you to Casey O'Leary, Char and Marg for sponsoring me to participate in Funrazor. Only 6 more days... if you would like to sponsor me, please click here.

Yesterday was a better day, but only because Bianca wasn't as sad and emotional. She was quite tired though and around 12pm the school called and asked if I could come and get her. She didn't want to eat her lunch, she was quiet and just seemed tired. As I got there all the other kids were out playing and enjoying the sunny day and I couldn't help realising how very different life is for us. We try very hard to do normal, ordinary things, but unfortunately things like the steroids often interfere with things like that. But she had a long nap after school and a definite improvement last night.

Today she coped with the full day at school, but once again, really tired after school and tonight.

Thankfully, tonight was the very last night of steroids for this month.

Oh how I hate it!

Right now Bianca is sobbing, uncontrollably sobbing. No particular reason, everything is making her sad, incredibly sad.

I hate what the steroids are doing to Bianca. I hate how it constantly gives her cravings, makes her ask for something and then saying she is not hungry, I hate how it makes her not sleep well and then waking up early and then making her feel tired during the day. I hate how it makes her sad, how it makes her grumpy and emotional and clingy. I hate how there is nothing we can do, except sit and wait it out.

I hate steroids and this week seems particularly challenging and tough.

I'm hoping for a better day tomorrow!

Question for the day

Today Bianca spotted the word "chef" on one of the restaurants close to us. She wanted to know why we say a "sj" sound and it starts with a "ch" sound. Oh the joys of the English language...

A really full-on day!

One of the very very common side effects of Dex is that it makes kids sad, emotional, unhappy, have mood swings and can even cause temper tantrums. Well, it is day 2 of our steroids for the month and I am counting the hours until Friday. It's been an incredibly tough and difficult day for Bianca emotionally and every little thing set her off. Bianca was also very very clingy. Earlier today she was okay, but this afternoon and evening was pretty full-on.

This does make me wonder how this will affect our Christmas celebration as Bianca will be on steroids then and it seems likely we may have to shift our celebrations to another date.

Tonight in the bath Bianca did perk up a little bit and we were talking about some stuff in general and then she mentioned that she misses her Ouma Amanda (Bianca's granny / my mom). It seems as if Bianca has really fond memories of spending time with my mom when she was here last year and every so often Bianca will mention her or something that she remembers from some of the fun games my mom played with Bianca when she was here. My mom has always taken such an active interest in us and the kids and pretty much on a weekly basis (sometimes more often) we can count on a news email from her side and usually she would respond to something I wrote about in my blog. That really means such a lot to us that we have this kind of support from such a special person, that even though she is so far away, she makes the effort to stay in touch with her own normal news. So thank you so much Mom!

So now we'll try and get an early night as we anticipate tomorrow to possibly be just as full on with the steroids!

And just before I go, just wanted to say thank you so much to C, S & A and Michele and Marc Danneels for sponsoring me for Funrazor. I am so close to reaching $2,000, thank you for supporting such a great cause! 9 More days and then the big day!!! If you would like to sponsor me, please click here.

Thankfully just a short stay.

Thank you so much for all the wonderfully supportive comments and emails.

Bianca was discharged yesterday afternoon after getting her monthly IVIG and Vincristine. She's much better in the sense that she has no more fevers (I think it shot up to 39.4 degrees - or somewhere there on Sunday night). So now Bianca needs an antibiotic 3 times a day until the course is completed.

Last night she did indicate her ear was still a little sore and she is not 100% herself and it doesn't help that she is also on steroids at the moment.

I was reminded how tough a hospital stay can be on all of us, trying to work out what to do with Caitlyn (thank goodness for Jody), what to pack, the logistics of Terence going to work and me staying with Bianca and be back home in time for Caitlyn and so on. So I'm glad it was just a short stay - I had visions that this might end up a long stay.

The stay was a bit tough on Terence as they put them in a shared room and being in a shared room you have no control over when the other people would switch off their lights and when they would switch off the TV. Around midnight they brought in another child who screamed and screamed and screamed and he was then moved at some point. And of course the 3 IV machines in the room would all beep throughout the night - all at diferent times.

But today Bianca is home and that is great! We decided to still keep her home to see how she is and if she doesn't complain of ear ache anymore today then she will go to school tomorrow morning.

So Bianca's medicines today are:

Breakfast
1 x 400mg Acyclovir tablet (anti-viral)
2.5 tablets Dexamethasone (steroid)
6ml Co-trimoxazole (antibiotic to prevent a certain type of pneumonia)
6ml Augmentin (for the ear infection)

Lunch
1 x 400m Acyclovir tablet
6ml Augmentin

Supper
1 x 400mg Acyclovir tablet
2.5 tablets Dexamethasone
6ml Co-trimoxazole
6ml Augmentin

Wait 2 hours

1 x 400mg Acyclovir
1.5 tablets - Mercaptopurine (chemo)

I'm just thankful Bianca can swallow tablets - thank you PlayKate!

A big thank you to Johan, Lisle, Anthony Theuninck, Mike Kmiec for sponsoring me for Funrazor - you guys are making a big difference! If you would still like to sponsor me - please click here.

Admitted

First let me start off by saying thank you so much to Catherine for sponsoring me for Funrazor - I really appreciate it! The clock is ticking and only 11 more days and then I will get all my hair shaved off. If you would still like to sponsor me, please click here.

It all started last night with Bianca waking up with a sore ear. In the end she slept with me in bed so I could be near in case she needed me. She woke up a number of times and finally at around 2am I got up and gave her some pain meds to see if that might make her feel a little bit better.

This morning Bianca's ear was still very sore, she was crying, and just generally not really herself. When we rang the hospital her temperature was sitting around 37.4 degrees and the hospital told us that we could bring her in and they would have a look. So at around 11am we went to hospital.

Bianca's temperature by this time was around 38.4 and so we needed to get some bloods done. We then saw one of the registrars who confirmed that her levels were all good, her neutrophils jumped from around 2 last month to around 3 now (this is often a sign that kids are fighting some kind of infection). Bianca has a bit of a cough, but her chest is clear, it is really just that her ear was quite red and swollen inside, so likely an ear infection that we are dealing with. But just to be safe, they took another blood sample to culture to see if there is something else. For most of the time Bianca slept and she was just generally unhappy and grumpy. So Bianca is admitted tonight for fluids and IV antibiotics and they will review tomorrow morning. It's funny how these things always seem to happen on a Sunday...

Regardless of how long Bianca might be in, I do expect tomorrow to be a little bit of a busy and longish day as Bianca will have her monthly clinic visit so she'll get the usual Vincristine and her IVIG and then the dreaded steroids.

Tonight Terence is at the hospital with Bianca and I will be home with Caitlyn and we'll take it from there.

Thank you

Just wanted to say a big thank you also to The Wolfe Family, Jaime, joanw, Kristan Mildren and Sharon Bennett for sponsoring me to participate in Funrazor. Only 13 more days and I will get all my hair shaved off.

If you would like to help, you can:

• Register yourself and participate by shaving off your hair and raising money for the Child Cancer Foundation.

or,

• You can sponsor me to shave off my hair - I don't mind shaving it all off. I did it last year and this year I will do it again! Visit my fundraising site by clicking here. It is a secure site that allows you to contribute using a credit card and it goes directly into the Child Cancer Foundation bank account (and it also enables people from other countries to contribute and support Bianca as well). You will even get a receipt to show the payment. Every single cent raised goes directly to the Child Cancer Foundation. If you are scared of the whole online payment thing, please let me know and if you are in my area, then you can donate cash and we will complete your details on the Funrazor form and you will be sent a receipt or I can let you know the actual bank account number for the Child Cancer Foundation and I'm fairly certain they accept cheques as well.

So there are some options to get involved. It doesn't matter how big or small the donation, every little bit will make a huge difference.

The Child Cancer Foundation doesn't receive any government funding and yet they do such important work and people like us simply would not have coped with Bianca's illness if it was not for them. Raising money through events like Funrazor is a way for them to raise awareness and to raise much-needed funds for them to continue providing this service. None of us chose for our children to get sick, it happened, without any kind of warning and for many of us treatment can take years and even after that there will still be tests and things like that.

I am participating because I am so very passionate about the Child Cancer Foundation. This is our way of giving back to them and saying thank you for all the wonderful support they give us. Many of you asked before what you could do to help us and this is definitely a way you can help!

On the 4th of December I will be there, getting my hair shaved off as a tribute to my wonderful little girl Bianca who has inspired me throughout her journey and continues inspiring me every single day of our lives and also to say thank you to some of the wonderful people who have been there for us, ever step of the way!

Saying goodbye to Kyah

This morning Terence and I flew to Wellington to attend little Kyah's celebration of life.

So this morning at around 7:30 Terence and I got to the Albany bus station and caught a bus to the city. Got there and we had to walk around a block or so to get to the stop for the airport bus and because it was just around the corner we ended up running (with me in high heels) (we must have been such a sight!). But we managed to catch the bus and from there got to the airport with enough time to spare to have breakfast. They have a new system where you can check in online (although we thought that "check in" means you are actually at the airport and checking in before you get to the airport sort of defeats the purpose of the whole making sure you are at the airport, but who are we to complain if it makes our lives easier). On the Qantas domestic flights they sometimes still have business class seats although don't offer a business class service anymore and so because we checked in early we got upgraded to the business class seats. How cool is that? So we got to Wellington and as we came out of the arrival section the bus was about ready to leave and we sprinted (me still in high heels), but we made it. Got to the city and because our flights were slightly late we were at risk of missing our train and so once again, sprinted all the way from where the bus stops to where the trains are and what do you know? We missed the Johnsonville train. Walked back to the bus stop to see if there was a bus that would arrive sooner than the next train and we were in luck!

And so we arrived in Johnsonville promising ourselves that we would not be running anymore. As we came around the corner to where the chapel is we noticed just about everybody had a teddy bear and we did not have a teddy bear, so we ran to Pumpkin patch (who didn't have a good selection on display), then ran to Warehouse who had no teddy bears at all and back to Pumpkin Patch and managed to buy a really cute little teddy bear. (So much for "we won't be running anymore").

And then later when it was time to go back we ended up waiting for the bus to the city and had a bit of a wait for the bus to the airport and we made the airport in time to take a bit of a break and eat some supper. Got to Auckland, waited for the airport bus and then finally arrived in the city. So we took a nice walk to where we would have to catch the bus to home and suddenly we could see the bus arriving and we were still almost a block away - so there we went, running again!!!

Running in high heels, not good! Running when you are as unfit as me and in high heels, even worse! I am guessing I must have run around 1 km today and for somebody who doesn't normally run, that's a lot!

Anyway...

The service was absolutely beautiful, but so incredibly sad. Kyah's big brother read the most beautiful poem he wrote for Kyah, they shared a bit of a favourite part of a Winnie-the-Pooh story, 2 of Kyah's grandparents and Marg from CCF had a chance to give tribute to the bravest and coolest "almost three year old" and Marg shared a really nice story about water bugs (if I remember correctly) turning into dragonflies. And Shanell also read a beautiful poem. It was such a beautiful service. But I can't remember when last I was that sad (well, reading the update that Kyah relapsed and also that she passed away, that was very, very sad too).

Little Kyah, you achieved so much more than so many people would ever achieve. You brought together people from all over the world, you inspired us all, you taught us so much. I'm so happy that I have had the chance to have met you, and thank you for sharing your story with me. Little Kyah, we will miss you so much, but we will never ever forget you!!! Rest in peace beautiful little girl and dance with the butterflies!

Shanell, Jason, Kaleb and Jordan - thank you for sharing your journey with us. Our hearts are broken for you, know that we are always there for you!