Something new

We've just created a brand new Youtube video of Bianca that you have to check out! (Click here for it).

I'm especially proud of it because the song is based on a poem I recently wrote which you can find here.  Bianca's teacher, Paul Forster who is not only a brilliant teacher, but also a singer / songwriter and author of the picture book / CD called 'You're not eating me' took my poem and turned it into a song which he performed at the Funrazor event that I organised.  What a stunning surprise!  I was totally blown away!

I hope you like our song as much as I do!


New home

Just so you know I started a new blog for us. You can visit us here. See you soon and make sure you say hi! :-)


This is it!

Today we reached an incredible milestone. Finally! I honestly had my doubts the port removal will happen today and right up to the point where they finally called us for theatre at around 4pm, I expected them to come and tell us that we've been bumped again. But apart from a very long day, everything went according to plan. Even now it feels unreal that it has finally happened.

Bianca was so excited to finally get to the point where her port will come out. Not that she remembers a time without it, but it means that soon she'll be able to get her ears pierced as she's been asking for a little while now.

The day was incredibly long. I have forgotten how very long theatre days can be and when we were finally called around 4pm Bianca was just so happy and could hardly wait. They didn't give her anaesthetic through her port today, but instead Bianca opted to have the mask with the gas option. It took around 1 hour and in that time Terence and Caitlyn arrived and then when Bianca came out and woke up we all went back up to the ward where we had to wait for 2 hours afterwards. Initially Bianca complained of a bit of a headache, but soon after she got some pamol she felt much better and her option to celebrate was to go out for supper.

We asked to keep Bianca's port and it was so cool to actually see what it looks like. It is in a little plastic container and we will put this in Bianca's memory box so she can show her kids one day.

When we are able to remove the dressing next week, then all that will remain will be a scar that over time will fade. But that will always be a reminder of just how amazing and how brave Bianca is and was. Bianca, you make us so incredibly proud!

Here are some photos of our day:

Waiting to be called to theatre....

One last glimpse at her constant companion - the port she received when she was diagnosed beginning June 2007:

All excited to finally be called for theatre, forms signed and medical notes all ready for the theatre staff...

Instead of getting the "sleepy milk" through her port, Bianca opted for the gas option today. Here she has just fallen asleep.

Back on the ward and choosing beads for the port removal and surgery today.

And Bianca's port. The round part is what was sitting just under the skin and where they used to access it to be able to draw blood when needed, give transfusions, IV fluids / medication and chemo. It then has a plastic tube which were fed through to the arteries (I think).

On the way out, we noticed that Radio Lollipop was open. Bianca got to say hi on live radio and choose a song.

And then we went out for a celebration dinner to Lone Star. And finishing it off with pavlova (and a candle)...

This journey has been incredibly long, at times exhausting, and overwhelming at the same time. But we have learned so much. We have been incredibly blessed throughout. We will never know why we were chosen to walk this road, but hopefully we were able to make a difference to somebody somewhere to help them know that they are not alone, that it is possible to live life despite living with cancer and that whilst we can't choose what happens in life, we can choose how we handle it.

Thank you to every single one of you for walking this journey with us.

And so as we reach this point, it is also time to say goodbye. This blog was started after Bianca was diagnosed to share with family and friends and to let them know what was happening. And so it is fitting that with Bianca's port removal, it is time to close this chapter.

But watch the space. I am hoping to start a new blog soon! And I hope to see you there...


And so it seems...

That tomorrow will be the day. On Tuesday we had our monthly hospital appointment, got there all ready with Emla on Bianca's port area and they then told us they won't be flushing her port as she's scheduled for theatre on Thursday (in 2 days time). Wow! Unreal!

Today I fully expected to get a call saying "sorry she's been bumped and we don't know when next", but the only call that came was to let us know she's on the afternoon theatre list and what time we would need to be there and what time Bianca should stop eating breakfast. It's going to be a long day. We'll have to stay 2 hours after Bianca is done with threatre before we can come home and no showering or anything that will cause the port area to get wet.

Bianca is so excited, she's been speaking about tomorrow since Tuesday. So fingers crossed all will go well and there won't be any last-minute bumping.


Feeling frustrated

Today I just feel frustrated. I just really want to get to the point now where Bianca's port can come out.

We were all set to get Bianca's port finally taken out tomorrow. On Monday (as some of you might know) we had to visit the GP. Bianca has been complaining of a sore neck / throat since Friday and Monday we could feel the swollen lymph nodes by her neck. For a moment there we thought maybe she somehow picked up mumps, but her doctor told us when we called that she has retained immunity against mumps and the only immunisation she'll need to get would be for Hepatitis. (Yeah!). However, he wanted us to take her to the GP because she might have some kind of infection. So that's what we did and Bianca had to get a range of blood tests done. Yesterday got a call from the GP and they can't see anything specific in the blood test results other than that she is fighting an infection and can we please bring her back for another checkup tomorrow (which was today really).

Then today I got a call from Bianca's oncologist and he pretty much told us what the GP told us and mentioned that he is happy with her "healthy response" to the infection and that at the moment they are not concerned about any leukemia cells hiding somewhere (so that is a huge relief to know that). But he also said that we'll now have to wait for this infection to be fully cleared before they will take her port out (sigh!) and that unfortunately he read wrong the last time and she pretty much will need to get ALL her baby immunisations all over again (double sigh!).

So now we are scheduled for another blood test next Tuesday to see if the antibiotics are doing their job and if further tests will tell us a bit more about what we might be dealing with.

And we are waiting to see when the next theatre appointment possibly could be.

So today I just feel frustrated. I really just want to move on now. But we'll just have to wait and see as usual I guess and not put our hopes up too much until it actually happens...



And it seems tomorrow will not be the day. We've been bumped - again! To the 1st of April. Sigh. It is not surprising though, just disappointing. But either way we are going in for a port flush tomorrow as it's been more than a month now. Sigh. Fingers crossed that this time round they won't bump us again.


Reaching THE point

If all goes well Thursday will be THE day. If all goes well on Thursday Bianca will get her port removed. Bianca knows it is going to happen, but since she doesn't remember a time without her port, she doesn't really know what to expect. But it feels wonderful to reach this milestone. 6 months off treatment - wow!

In the beginning, reaching long term maintenance felt so far away, then we reached that and the end of treatment felt like a far and distant point and now we are here.

Bianca wants to get her ears pierced and actually wanted it done the other day already. We've always said we will let our kids decide when they are ready to get their ears pierced, but of course for Bianca, she can't really go into theatre with newly pierced ears, so we had to tell her that she would have to wait till after. So not quite sure when after - I still have to find a place that is good with kids. Any ideas will be greatly appreciated.


Late update - I'm sorry!

I feel incredibly guilty for not blogging sooner. I should have updated after Bianca's last hospital visit which was the 22nd of February. But simply, time ran away with me. All Bianca's counts are looking good. White cells were a bit on the high side, but that is in all likelihood just some kind of mild infection lurking around there somewhere. The rest of the results all good, so no worries there. They took an extra sample to test Bianca's immunity against measles, chickenpox and so on and so by our next visit we'll know if Bianca will need to get her baby immunisations again or not. I'm really hoping she would have retained most if not all immunity, but the doctor says that is very unlikely. Uggh. I used to hate taking Bianca for her baby immunisations and Terence often ended up having to do it and this time will be way worse because Bianca is older. Yes, yes, I know we've been through the whole cancer thing and chemo and all sorts of things, but whenever there is some kind of needle going into an arm or leg - I hate that because Bianca hates it.

We are also getting pretty close to getting Bianca's port out. I'm sure it will feel as if Bianca is missing something. Her port has been part of her for so long now and she really can't remember a life without it. To her it is part of her. We've asked if they could please make sure we get it back because Bianca will want to see what it looked like (and us too).

The only thing that really struck me on the 22nd though is how extremely tired Bianca was after the visit. She became really quiet in the car on the way back home and literally 5 minutes after getting home Bianca was fast asleep. Unfortunately we are not quite there yet with Bianca's eating. Hard to know if it is as a result of the chemo, or if Bianca might be turing into one of those vegetarians who prefer chicken rather than red meat or if she is just being 6 and fussy. And she lost 1kg since her visit in January. Doctor is not all that worried at the moment because she is within her range, and I guess it is just a matter of putting my foot down a bit more. Along with that Bianca doesn't always sleep all that well. It suddenly occured to me that maybe this whole new fast-paced normal lifestyle might actually be a bit much for Bianca. Sure she copes emotionally, but physically, perhaps not so well. Since I started work we would wake up early, rush out the door, drop Bianca off at before-school care, then school, then after-school care and finally home by 6:30pm. And I guess that is the challenge, finding a normal without putting too much pressure on Bianca. I guess it is easy to sometimes forget that it can take a while to fully recover.

But it is also funny how things work out because it just so happen that I had to resign from my work (last permanent full time work day 29 March and then contracting part-time for the month of April) because Terence's job situation is busy changing and in all likelihood will mean moving back to Wellington. Which means I will stay at home again and this should hopefully have a positive effect on Bianca's energy levels.

And that is our news in a nut-shell...