Our very last hospital visit on treatment

Today was our very last hospital visit on treatment. It was also a theatre day. To those who are not familiar - a theatre day for us means Bianca goes to the operating theatre where she gets a general anaesthetic and then a lumbar puncture where they insert chemo into her spine. I learned today that the general anaesthetic is the same stuff as Michael Jackson used to get which from what I understand he used to take to help him sleep. But one of the operating theatre staff mentioned that general anaesthetic doesn't actually help you sleep, yes you are unconcious during that time, but you aren't actually sleeping, but anyway. Initially in Bianca's treatment she used to go to theatre every single week, but since she's been on maintenance it's been every 3 months and today was such a day.

I warned Bianca that I was going to take lots and lots of photos. She's not all that fond of photos, but I explained that when she is 10 years old she won't remember and then she'll be happy I took lots of photos. So she went along with it to keep me happy.

Now just a warning, here are lots and lots of photos of our day. I figured that since this was our last theatre day it deserved lots of photos. So here goes:

Bianca's day started by taking 1 Omeprazole capsule, 200mg Acyclovir and 2.5mg Dexamethasone (this is the steroid Bianca takes every month). She had to finish breakfast at 7am in preparation for theatre at 1pm.

Bianca took along her baby to the hospital.

At the hospital we let Bianca wear a mask because she has a bit of a cough and at this point she hasn't seen her doctor yet. Here she is putting the Emla cream on her port site. This cream numbs the skin so she does not feel when they attach the IV line to her port site.

She got her finger prick. They get a small blood sample to get a full blood count. We usually look at her haemoglobin, platelet and neutrophil levels.

Bianca especially loves the special bravery certificate they give after the finger prick.

We always have to wait a bit after Bianca's blood test, so I took Bianca to the play ground they have at the hospital. Because she was the only one here, she took off the mask.

At Clinic they usually check her weight and height.

We waited in the isolation waiting room to see our doctor and Bianca chose some beads.

Then we saw Doctor Stephen. Thankfully he wasn't worried about Bianca's cough and she was able to remove the mask and didn't have to spend the rest of the day in isolation.

In preparation for the IVIG transfusion, they checked Bianca's blood pressure, temperature and her oxygen levels.

Then it was time for Bianca's port access:

And then as they were busy hooking Bianca up to her IVIG, she started stringing some of her beads:

Bianca's IVIG ran for around 2 hours. It helps boost her antibody levels to help her fight infection.

After this it was time for Bianca's Vincristine - one of the chemo drugs she gets every single month.

Finally it was Bianca's turn to go to the operating theatre. They always go through Bianca's notes before the time.

I was allowed to go in with Bianca and stay with her until she fell asleep. I have to wear this beautiful outfit which I'm convinced they've designed in such a way nobody will ever want to steal it :-)

Inside the operating theatre, busy getting the general anaesthetic which Bianca calls her sleepy medicine.

It took all of maybe 30 seconds for her to fall asleep. She was not in the least afraid and we've never had any problems at all.

Here Bianca is in the recovery area. By this time she already woke up, but fell asleep again for a bit.

During theatre they dressed up her baby:

During theatre they inserted chemo into Bianca's spine during her lumbar puncture.

And then back at the ward it was time for eating. By this time it was around 15:30.

We had to wait 1 hour after getting back on the ward and then we were able to leave at around 16:45 or so.

All in all, a long, but good day. As always no complaints and Bianca always copes so incredibly well. And this was the very last theatre day on treatment. Next one in about 6 months' time when they will remove her port. I can hardly believe we reached this milestone!


To be able to live life

Tomorrow is our theatre day. Our very last theatre day on treatment. There will only be 1 more theatre day in 6 months' time when they remove her port, but for now, this will be the last one. So tonight I told Bianca that she would not be going to school tomorrow as she will have theatre day and she said:

Bianca: I like going to theatre

Lea: Oh really?

Bianca: Do you know why I like it?

Lea: Why?

Bianca: Because of the sleepy medicine they give you. It makes my head all dizzy. I like that.

Lea: Well this will be the last one until they take your port out in 6 months' time and then no more.

Bianca: Aaaahhh. I want to go on Tuesday again.

Bianca seems quite disappointed that there will be no more theatre days ahead. I can't say I blame her, this is all she knows. This is her comfort zone. She knows what to expect and I guess she must feel in control in this "world". This is her life, and she probably can't imagine her life without it. She definitely can't remember life before this, because when I recently asked her if she remembers not having a port, she just stared at me blankly. As far as she's concerned, she's always had a port.

Whilst this may seem really sad, the truth is that it is actually a blessing that she remembers little of a life before being sick. It means that she has never mourned the previous life she had. She never regrets the life she has now. She lives her life, knowing that it is hers and that it is meant to be lived and quite honestly it would simply have been so incredibly sad if she wasted it wishing it was how it was before she became sick and wishing her life away. She really was at the perfect age when she was diagnosed, old enough to understand what we needed her to do, but young enough to not ask "why me?", "what if?", and not to regret every minute of her life. To be able to live life regardless of the challenges - that is a real blessing!


The science of choosing glue

Recently one of my Facebook friends suggested I play around with some spare Paua shell pieces and canvas in preparation of the photo collage project I want to make. And so off I went to one of the stationery stores to buy two small square canvasses. I have a supply of acrylic paints from when I attempted to learn to paint a number of years ago and then of course I had to find out what type of glue to use. I sort of assumed I would just take a glue gun and stick my paua shell pieces on the canvas, but my Facebook friend consulted with the glue master (a.k.a her other half) and he suggested I get some Ados glue.

So armed with the suggestion of Ados glue I went to Mitre10 today. Walked in and walked up and down the isles looking for where they kept the glue. Finally somebody pointed me in the right direction and there I was faced with every possible type of glue you can imagine. It is then that I realised I had no idea if Ados was the make or just a type of glue, you know like craft glue or wood glue. Hmmm. I was about to give up and find some glue expert at the store and then just as I walked around the corner, I noticed a whole shelf... of Ados glue. But then problem number two that my Facebook friend's glue master (a.k.a. her other half) did not mention is that you get about a hundred different types of Ados glue (okay I'm exaggerating, perhaps around 10 different types). But still. I'm not at all a glue expert and here I was faced with things like Builder's Glue, F2 Contact Spray Adhesive, F2 Multi Purpose Contact Adhesive, F22 Long Tack Adhesive, F3 Non-drip Contact and so on. So you can well imagine my dilemma here. None of them actually listed Paua Shell of one of the things that you can stick to canvas. Finally I gave up and searched for somebody there who had any idea which ones of the tall, small, round, squeezy containers would actually successfully glue my paua shell pieces to canvas. Note to self - next time ask for help first before spending 20 minutes staring blankly at the glue shelf. I finally left with Ados F3 which is "ideal for vertical and overhead services" and "won't drip or slump" and is a "contact adhesive in gel". Of course it has loads of warnings that it is toxic, that it may be harmful if swallowed and that I should avoid breathing the vapours and I learned it is a highly thixotropic, high-strength contact adhesive (yes, even after reading about thixotropic I still don't really understand what it means, but as long as it can stick my paua shell pieces, then that's all that matters).

Anyway, tonight I decided that I was going to attempt creating my small canvas and Bianca enthusiastically wanted to make her own piece of art too. So we sat there mixing paint and finally created this:

My attempt (and yes the glue worked!)

It doesn't have to make sense - it is art after all :-).

And Bianca's master piece:

She wants to decorate it with some paua shell pieces too, so tomorrow I will give her a hand with that seeing as the glue is probably not all that child-friendly being toxic and all.

And now that I know the glue works, I'm one step closer!

Born to Bead

Today was an exciting day. Today Terence, Bianca, Caitlyn and I went to visit the Born to Bead studio. It was really just by accident that I discovered her website the other day and must say she makes the most beautiful glass beads. She even made a bead that looks like earth and wow, it is just so amazing. She also has her own blog if you would like to have a look. I would simply love to learn how to make glass beads and maybe one day when I have time and available budget, I could look at attending classes. But right now, I just have too many other things on my plate. Like this photo collage project I want to do to mark end of treatment. And just to remind you all, please read my previous post because I would love to include photos of all our blog readers.

But back to the point of this particular blog entry. What caught my eye on their website is that they make beads for the Beads of Courage programme. So once a month they will have some artists who all come together and make the most beautiful glass beads and then some volunteers who come to help prepare the little bags and whatever else needs to be done.

So earlier this week I wrote to Lisa-Jane to tell her I thought her work was amazing and that we too participate in the Beads of Courage programme. She wrote back and invited us to come and have a look. And this morning we went.

It was so cool!

Bianca and Caitlyn all ready to meet the fantastic bead artists and volunteers. Bianca and Caitlyn both wore their sets of beads to share.

Meeting Lisa-Jane and one of the bead artists. We bought some flowers and chocolates as a thank you because we think what they do is just so special and amazing and certainly Bianca's chosen some pretty cool glass beads throughout her journey.

Bianca got to wear these cool looking glasses as she watched them make some beads. I told her she looked a bit like an ant.

Bead-making in progress:

There were some volunteers helping out too.

They make the most beautiful milestone beads for Beads of Courage.

During most of the visit, Caitlyn was "tall" to keep her out of the way as it wasn't the most suitable environment for a 2.5 year old and quite frankly I did not want her suddenly deciding to "help".

Both girls made some special thank you cards at home that they took along and gave to Lisa-Jane.

Just before we left, Lisa-Jane had a bit of a look at all Bianca's beads and explained some of the techniques used to make some of the glass beads Bianca has.

Lisa-Jane and the team, wow, today was just brilliant. When Bianca left the studio she wanted to know when she would be old enough to make her own beads. It was such a great visit and the work you do is just so very special. Thank you!

Knowing we are not alone

The one thing I didn't really expect when I stated this blog was that I would have readers in so many different countries. That's the best thing about having our hit counter. Oh and seeing how people find our blog, although for us it is pretty ordinary most people find our blog by searching for us or by typing a phrase like "paua shells" or something that I referred to and find it this way, not half as entertaining as how some people find some of the other blogs I follow. They sometimes do a whole blog post about that and I've been wanting to do that, but people simply don't find our blog by typing questions in Google like "does my girlfriend still love me?" and "why does my child have a temper tantrum?". Oh cool, maybe by typing these questions some readers will now find our blog by asking those questions :-).

Unfortunately the problem with the free hit counter I installed when I first started my blog is that it stopped working after a while. Something to do with Terence installing Linux and cookies or something, but it would not let me log on. Not even when I clicked on the "I forgot my password" button and it sends me the same password I have been using from the start. So it is a bit disappointing that I lost all those initial stats. But we can't sit and mope and feel sorry for ourselves. As Terence says "that's what you often get when you use things that are free". So recently I installed it again and it works fine.

But to get back to the point, it is so cool to see which places some of my readers come from, places like New Zealand (of course), the UK, the US, South Africa, Germany, Australia, Canada, Ireland, Sweden, Maysia, Italy, Hong Kong, Mauritius, Netherlands and Jordan.

Recently I received an email from one of our readers and the email gave me an idea. Now that I'm making this photo collage for our wall, wouldn't it be great if all our blog readers could send us a photo of themselves which I could then use in this photo collage, because the best thing about this journey has always been knowing we are not alone.

We don't get a lot of comments. Let's be honest child cancer is not the world's most interesting subject and I sure wish I could write as entertaining and compelling as some of the other people out there like Sharon, Suzanne, Amy, Renee, Kristie, Sandy and Carole. Well, actually all the blogs and journals I follow are all good, but these ones in particular make me wish I could write like them. But my blog served it's purpose, it's done what it was meant to do and to the best of my abilities I have always tried to share as much of our journey as I could. I am so proud to have had the chance to create awareness of something that I certainly did not have a clue about before Bianca was diagnosed.

So as we near the end of our treatment, please could I ask that you let me know who you are even if you never comment or email, but simply lurk in the background, if you've been a reader of our blog, I'd simply love to know to be able to share with Bianca. If you don't feel comfortable leaving a comment, please do send an email to leawhite2109@hotmail.com. And if you could send a photo of yourself so I could show Bianca who all the readers of her story are, I'd really appreciate that!

Just knowing that we are not alone, that makes the world of difference!!!


We are just so close

I don't have any significant news for today. It was a pretty ordinary day today. Although Terence and I did manage to go for breakfast this morning. He doesn't often get to take a chance to take time off work, but this morning he was off from work. So it was really nice just the two of us. We haven't had much "us-time" since Bianca was diagnosed because life with kids are simply... well busy and if it includes a child with cancer, well then you can't always have luxuries like these. But we are not complaining!

Today I was asked how we feel about being so close to end of treatment and the truth is, I'm not quite sure. It doesn't feel quite real just yet even though I know that it is only 16 more days. I don't think it will quite hit me until the first time we don't have to time Bianca and the first time we don't have to give her a chemo tablet. It will also be quite weird for the school as this will then be the very first time since Bianca started school last year that she will not have to go get medicine at lunch time. It feels weird to think that we are so close when the past two years felt like a lifetime. Right at the start it didn't feel like this day will ever come to be honest and it felt just so far away, but here we are. But I am so very excited that we are so very close to this milestone. Only 16 more days!!!


Aren't they beautiful?

I'm well on track with the projects I am busy with. I am in the process to finalise plans for our end of treatment celebration which, in my opinion, will be something really special and significant. But more on that a little later once I know all the details.

I am also slowly but surely getting ready for this photo collage that I want to make to hang on our wall. In my mind it will be a visual representation of the cancer journey that we've been walking. I plan to incorporate treatment photos and photos of more normal, everyday kind of things and then paua shell pieces. I want to use the paua shell pieces as a visual representation of the total number of days since diagnosis until last day of chemo. I know, call me crazy.

Paua shell pieces are quite special. It has the most amazing colours and they are so nice and shiny. Each piece looks a bit different and it is just so suitable as the representation of the number of days because let's face it, no two days were the same even if they sometimes had similar aspects to it, and let's face it, despite the challenges of our journey, we had many beautiful days too, we found many blessings along the way and so I think paua shell is just perfect.

Now for those of you who don't quite know what paua shell is, here is a bit of an explanation:

It is only found in the sea around New Zealand. This marine mollusk eats seaweed and lives clinging to rocks at depths of 1-10 meters, normally along the shoreline. Paua Shell is the most colorful of all the abalone shells. Most other abalone are pale in comparison.

There is no other shell in the world that has the colour like Paua Shell colour that varies from greens & pinks to purples & blues and even some shells with gold or crimson tonings.

The colour in the paua shell changes when viewed at different angles. This iridescence, similar to that of Mother of Pearl shell, but far more brilliant, is what makes paua shell so amazing as a gem material for use in jewellery. It is truly one of nature's marvels. Each shell is different in it's colour tonings, and in the patterns within the shell. The black patterns in the shell come from layers of protein that are laid down between the layers of calcium that make up the shell. The brilliant colours are from light being refracted within the crystal layers. The same effect that the iridescent colour found in Opals.

Reference: http://www.reijewellery.co.nz/what_is_paua.htm

To read more, click here.

I want to give a big thank you to Paua World who assisted me with my request for paua shell pieces, they were so incredibly helpful, thank you very much!!!

I took a few photos of some of the pieces that I received from Paua World and unfortunately my photographic ability doesn't do much justice to just how strikingly beautiful and unique these pieces are, but to give you an idea:

Another thing I do want to incorporate too is Bianca's collection of beads. Not Bianca's original set of beads as they are just too special to play around with in a photo collage that I'm trying to put together. I want to keep her set so she can wear if if she feels like it, show it to her friends, she can look at them and touch them - they are her beads after all. However I do want to incorporate beads into my project because for every one of those procedures and treatments we have been there and as a family we have had to stay standing and keep walking and stay strong, it was such a huge part of this journey, in fact it was the journey pretty much.

So initially I thought if I order a duplicate set through CCF they could include my order in their next order of beads and then I could pay them for that, but they were not really keen for me to do this and incorporate it in this way. But that's okay. Even if they don't share the same sentiment about this project, it is still very important for us to mark the end of this journey, to have something visual that we could put on the wall and see at a glance where we've come from, what Bianca and us as a family had to go through to get here. After all this is what will shape our journey and our road going forward. It isn't something that we simply can get to the end of and say "oh good, that's the end of it, now let's forget it ever happened". It doesn't work that way. Our journey won't be finished when we reached the 11th of September, it will still be part of us for a very very very long time and now we'll have to make sense of it all and pick up the pieces and so I think it will be important to remind us of just how far we've come and how much we've achieved. And so this photo collage will be a way to recognise the challenges and to remember that it wasn't all sad and difficult and that despite the challenges we were blessed too.

So yes, I will still include beads in my project. It is a bit disappointing that I can't order them through CCF as they already have access to the colours and sizes, but I am able to find stock at places like Spotlight and other bead supply stores and I have just discovered that perhaps I am able to actually make these using polymer clay. It doesn't look too complicated (of course those may end up "famous last words"...) and I would be able to paint it in the relevant colours. And so once I have printed out all the photos I need to, I'll know just what size bead will work well with my project and then I'll have to put all the elements together and hope it looks the way I imagine it would.