Shhhh! Don't tell!

It seems somebody decided to get in early.  Last year Santa sent Bianca and Caitlyn a note to remind them to do their Christmas list and then he shared a wonderful secret that they are able to "post" their letter to him by simply putting it inside the fireplace (obviously with no fire at the time) and then knocking 3 times on the outside.  And what do you know?  The next morning their letters were gone!  Wow!  So this tip must have stuck and last night Bianca decided it was that time again.  Time to get her list ready and sent off.

So on her list she has:

A phone.  (I guess my little girl is growing up...)
Harry Potter 7 part 2 / Harry Potter 6
A bedside lamp
Goosebumps books and DVDs
Craft stuff
Stationery
A new bike
And a times table chart

Yes, I was a little surprised about the last one.  I don't think it is usual for kids to ask for something like this for Christmas. 

What are your kids hoping to get for Christmas?

Just the way it is for us...

Thank you for all the messages yesterday.  Thankfully Bianca was much much better today.  I knew that it was likely just some or the other bug she was fighting, but the cancer parent in me questioned why she was suddenly so lethargic.  And sadly that's the way it is.  We lost the innocence we had such a long time ago.  The time where a cold was really just a cold or your child was just having an off day. 
The day we found out Bianca's tonsillitis was more than just tonsillitis (much much more) was the day we became "those" parents.  Those paranoid, neurotic ones always questioning, always wondering, always assuming it is not as simple and straight forward as a cold. 

For most of the time I am doing really well.  I mostly refuse to give in to the "what ifs".  I mostly refuse to get all stressed out until I really have to stress.  But last night was different for me and I did what I really should not have done, I consulted "trusty" friend Google. 

Blood tests have become the thing we rely on the most.  It tells us if Bianca is doing well.  It will tell us if we need to worry.  And sometimes the 2 months between hospital visits (and soon 3 months) can feel quite long. It is times like these that it really did feel safe when Bianca was still on treatment and very regularly monitored.

This is life for us and will be for a very long time to come still and today I am once again reminded to be grateful that Bianca is indeed doing really well.  That her last blood test results were normal, that she is no different to any other 8 year old.

Sigh!

I didn't plan a second entry today and quite frankly I was happy enough just with the swimming update one I did earlier (go see the cool photos of Bianca and Caitlyn during their swimming lesson). But alas - Murphy struck today.  The one day that I chose to take an hour long train trip to the city (and an hour back) the school phoned to let me know that Bianca complained of a sore tummy and is simply just not feeling well.  Sigh!  And so unfortunately as I was waiting for a train back Bianca had to just sit and wait for me until I finally got back to Waikanae just as school was about to finish for the day.  She felt pretty miserable when I got to school to pick her up.

I have no idea what is up, but she's been sleeping since we came back from picking Caitlyn up from daycare and that was about 5:30pm.  That is so not like her.  But hopefully after a good night sleep she'll be back to her normal self in the morning.  Of course now I can't stop wondering what her blood counts are like and the 5th of October is feeling too far away right now.  That's when Bianca's next appointment will be.

I really really don't like it when she is not feeling well. 

An up and down day

Today has been a rather down day for me.  I don't really know why to be honest.  Maybe that I went to bed really late last night and was listening to a bunch of songs on Youtube and I really shouldn't do that late at night.  Or maybe it is that my birthday is around the corner.  Of course it is exciting to have a birthday and I'm getting the most exciting present from Terence, but I guess it is also a bit of a realisation that yet another year has passed, another year older and I don't think I really achieved much this past year.  Okay fair enough I have managed to learn to play 3 songs on the recorder, but other than that no real achievements.  Which I guess I'm finding a little bit disappointing.  Oh well.  I think I really just need to go to bed early tonight. 

One thing that was really exciting though was when Bianca and I joined Winara House (a local retirement village) for their morning tea.  Yesterday we baked a whole bunch of biscuits - some Romany Creams, shortbread, Betty Crocker chocolate chip and chocolate hedgehogs.  The ladies were absolutely thrilled to meet Bianca and I must be honest it feels so rewarding when you do something nice for somebody and you can just see the way their faces light up and you just know that in your own little way you made somebody's day, possibly made a difference.  Today was part of Bianca's home learning challenges and this was her 'Giving' task.  She had such a great time last year, that she wanted to do this again.  We'll definitely visit them again really soon I think.  I'm not going to post any photos because I didn't ask if they would be happy to have their photos on the blog, so you'll just have to take my word for it :-)

And that's it from me tonight.  I will take my thoughts and head off for an early night tonight I think.  

24 (or 2 if you prefer) is the sweetest number...

... for us today.

From the early days:

Early days all tubed up - oxygen, ECG and nose tube for NG Feeds

 
To the last day of treatment (11 September 2009) stringing the most important bead of all - a purple heart.  And wow - what a journey it was!

Last day of treatment stringing her purple heart bead

Looking at Bianca today (2 years later or 24 months if you prefer), it is simply amazing just how far she's come:

Today, a normal 8 year old wearing her more than 1,300 beads of courage!

It is hard to believe that it was 2 years ago when Bianca finally finished her leukemia treatment after 830 days.  Some days it feels like a lifetime ago, some days it feels just like yesterday.  I will always have fond memories of the time we planted Bianca's tree (click here to see).

Today we are thankful that Bianca is doing well.  We are aware that things can change at any time, but for now, we are just appreciating the blessings we have received. 

Classic Hits has this promotion where you can submit a song that has a special meaning to you and the story behind it and then if you are chosen, they play it on a Thursday night.  So they waited until this past Thursday to play my special song in honour of Bianca's 2 year anniversary of being off treatment:

Bianca, we are so incredibly proud of you.  Of the way you have always faced the challenges with such a positive attitude.  You showed us your determination, your love for life and you taught us how to live just for the moment.  And one day when you look back at the road you walked, I hope you will know that nothing is impossible.  So in celebration of today:

"Now that wasn't so hard, was it?"

I cannot believe that in exactly 1 week Caitlyn will turn 4.  Caitlyn is so excited she can hardly wait and keeps begging me to tell her what she'll be getting for her birthday :-).

Not so long ago Bianca decided that even though it is still months before her birthday, she wanted to start planning it - the invite list, the games they'll play and of course what cake she'll have.  And so she dug up a book that I've had for a while (so long I can't even remember where I got it from) - Debbie Brown's 50 Easy Party Cakes (yeah right!  Easy!!! [insert roll eyes here]) (Definitely not easy in my world...).  So anyway, Bianca was paging through it and at first was all determined she was going to make and decorate her cake, but I think since then she's decided it would be my job.  And of course then Caitlyn had to page through the book and immediately decided she wanted this cake:

And she's absolutely set on it.  Sigh!

So last night I finally set about making a practice cake.  You know just in case it turns out a huge flop and then I can't only start the night before her party.  So best to practice a bit before and know what is involved.  Oh my goodness!  This cake is fiddly.  I managed to bake 2 bowl shaped cakes that I managed to put together to resemble a round ball and then it was time to role the thin pink strands that go around the ball and that was pretty tough - thicker in some places and thinner in others.  And it felt like it took forever (not the best decision to start at 10pm).  And then the kitten.  Why do they always make it look so much easier than it really is?  By the time I was finished I had this tiny little thing on top of this big round ball - almost looks like a mouse a bit.  And the eyes are not quite symmetrical.  And so by 1am I finished and stumbled off to bed and this morning Caitlyn got up - all happy and well rested and said "now that wasn't so hard, was it?" (if only you knew my girl, if only you knew...)

Edited to add:

As requested - here is my first attempt.  Excuse the second photo it is very blurry (but then it was 1am in the morning...)

Two monthly hospital visit and school updates

Bianca had a hospital visit today.  She goes every 2nd month and we do bloods and the doctor gets to see her and make sure that we are still on track.  Bianca's counts were all good, Doctor is very happy with her and even her weight and height are on track.  She didn't get to go to school today because by the time we got back from the city, her school closed for the day.  They closed earlier than usual because of parent-teacher meetings.

I actually had an informal chat with Bianca's teacher about a week ago, but tonight was a "formal" opportunity.  Only 10 minutes to share our expectations because they have not yet had a chance to test the kids.  Both Terence and I are so impressed with this teacher and we feel absolutely confident that Bianca is in for a great year!  He feels confident she will be one of the high achievers in his class and has already told us that he is very committed to making sure 2011 will be a fun and challenging year for Bianca's class. 

Bianca also started with One Day School yesterday and she had a very exciting day!  They discussed famous people and challenges and Bianca "invented" a drink bottle that "holds" the straw for you.  She also drew a design for an automated plant feeder and the teacher was very impressed with her idea and demonstrating the process. 

I'm so very proud of Bianca!

New year

Wow, I can't believe it has been such a long time since I blogged.  Where did the time go?  Oh wait - that's right, things here have been busy, busy, busy - I'm busy planning Caitlyn's birthday party, I had to play Terence's birthday party, Bianca started school again for the year and I've been job hunting)... But anyway...

On Tuesday Bianca started again with school.  Our schools close late in December and only start again at the start of February.  This year Bianca is in Year 3.  She was so excited and could hardly wait to start.  She likes her new teacher and I think Mr Forster will be a great teacher for her.  Bianca being gifted in some areas needs some challenges and when I had an informal chat with him now in the week, I feel confident he is the perfect teacher for her.  He seems very committed to making sure that this year will be fun for the kids, but will also offer lots of challenges for them.  Bianca is also starting her One Day School again from this coming Wednesday where she'll attend this gifted class once a week at another school.

The last 2 and a half years the kids were placed in groups around a round table, but this year Bianca is excited that she will have her very own desk.  And what's more, that it has a lid she can lift up and put all her stationery and books inside her desk.  The kids are still sitting close to each other, but they will have their own space really.

So here is to another school year.  Bianca, we know you will do just great and will make us soooo proud!

Ready, Set...

And go...

We are all packed and ready for Bianca's camp tomorrow with Camp Quality.  It feels strange not to have to rush around at the last minute getting the last few things crammed into Bianca's suitcase.  We are all ready.  It feels as if I forgot something, but looking at the list - nope, seems like we have it all covered. 

Bianca is so excited.  She can hardly wait.  She'll be on camp until Sunday, meeting lots of new friends and doing loads of fun things.  Amber, Bianca's companion assured me she will be taking lots of photos. Can't wait to see.

The things we got up to in the holidays (mostly a photo story)

The last few days were truly relaxing. Up to Christmas and even the few days afterwards that Terence's brother was here, was still pretty busy. Not only with Christmas preparations, but also showing Alistair some of the things New Zealand has to offer. After Alistair left, we kept it quiet and low-key. We didn't really go to the shops other than to find me a new cell phone, a new oven light bulb and to buy groceries and I must say I really enjoyed the slower pace of the last few days - very relaxing.

Every morning we got to sleep in. I have wonderful kids! Bianca likes to sleep in a bit too and each morning we'd wake up and Caitlyn would be quietly playing next to the side of our bed, patiently waiting for us to get up. I really don't envy parents whose kids get up and demand attention from 5am each morning!

Apart from this we took the kids to the park where they got to ride their scooters, Bianca got more practice with her roller blades and they even got to play at the park for a little bit.

Then we went to Staglands which was lots of fun and we got to see many cool animals.

And we've gone for walks. Caitlyn and Terence did shorter walks, but Bianca and I enjoy walking for around 5km. All the way to her school, around her school and back home again. The best time for us is around 7pm and it is really peaceful. You can hear the birds as they go back to their nests for the night (even though it still looks really light) and I love seeing all the pretty gardens and all the trees. Bianca would take her scooter and scoot ahead while I follow - I love that she is able to do this! And when I read on some of my South African Facebook friends' statusses that they never go for walks because it is not safe - then I feel truly blessed that we can do this without a worry in the world.

Today it was back to reality and to our normal routines to some extend. Caitlyn's one daycare started again today and Terence was back at work and Bianca and I mostly amused ourselves. We visited the library where we borrowed a bunch of books and a highlight was spending time with 5 little kittens at one of the SPCA fosters who live really close to us. It was sooooo much fun :-)

Please adopt me - I promise to be very very good...

Celebrating Christmas

The night before Christmas we put out the stockings - for the 4 of us as well as Terence's brother who came to visit us.

The kids put out cookies and milk for Santa and carrots and water for the reindeer.


And then they woke up so early. Usually we have to wake Bianca up, but not on Christmas morning, she was the first one to wake up. And then? Then it was time for presents (how exciting!)

My mum made this very cool puppet.
Bianca was so excited that Santa brought her the guitar she asked for. And it is pink!!!! (So now Bianca will have to learn to play)

Then we had a huge Chrismas lunch. We didn't do turkey because that would have just been way too big for the 5 of us, so instead did some chicken and a small leg of pork with the usual rice, potatoes and vegetables and afterwards pavlova as part of our dessert.

I'm not all that good with interior decoration, but I tried to make our table look nice and festive.

I even added some little pohutukawa branches which is from the pohutukawa tree (also known as the New Zealand Christmas tree)


Bianca enjoyed reading the little jokes that came with the christmas crackers:


"Cheers!"

And then in the afternoon we took advantage of the sunny day (even though it wasn't overly warm):


And that is our Christmas celebrations - in a nutshell :-)

Health Update

Sunday night was rough. Caitlyn woke up around 5 times between 11pm and 4am, each time crying "ouch, ouch, ouch". Not sure what was up, but the next morning we wondered if she actually picked up Bianca's bug because she was a little warm in the night. Thankfully it seemed Bianca was all better again and by Monday Caitlyn was also feeling much better. So must be some kind of 24 hour bug. Phew! Big relief. I would hate for the kids to feel miserable with Christmas just a few days away.

Fever

:-( Bianca is feeling pretty sick and unwell tonight. She woke up this morning with a headache and the whole day pretty much the headache would come and go. This morning she felt particulary unwell and then when she perked up we left to meet Terence in the city. About halfway Bianca got car sick and I had to stop the car and she barely had time to open the door. She was okay for most of the day, but about 1:30pm started complaining about her headache again so I stopped at the pharmacy to get some paracetamol for her. She seemed to feel a bit better after this. By 6pm I had to give some more paracetamol and then it was time to go home. When we got home we could feel that she was pretty warm and her temperature was around 38 degrees (celcius) (about 100 degrees Fahrenheit) and we kept checking her temperature and finally when it reached 39 degrees (celcius) (about 102 degrees Fahrenheit) we decided it was time to take her to the medical center to get checked out.

It is a bit scary because a fever can mean so many things in our world. And even though we know that in all likelihood it is probably just that she picked up flu somewhere, I do have this nagging little voice in the back of my mind wondering if this might have something to do with her leukemia. Which I don't believe is likely given that her preliminary blood test results yesterday didn't show anything that might be a concern. But still, sometimes you can't help feeling a bit worried.

Long day at the hospital

Yesterday was Bianca's 2 monthly bloods and oncologist visit. We set off for the city around 10am. When we got to the hospital we first went to get bloods done and then went in search of lunch. It takes around an hour for the results to be ready and we always do this so that we have a bit more than an hour before our appointment just in case it takes a bit longer for whatever reason. 2pm was Bianca's clinic appointment. We got there and they told us that they just heard from the lab. Bianca's blood sample clotted and they were not able to use it. So we would have to do another blood test after her appointment. Sigh!

The doctor had a good look at Bianca and declared that she looks pretty healthy and that he is not worried about her. We were not able to discuss the blood test results, but as everything else seemed fine, he was confident the results would be good as well. We discussed the Echo results from the last one Bianca did and they were fine. The next Echo will be scheduled in 5 years' time.

Then it was time to get another blood test done. The first sample that the nurse took clotted almost immediately. She then pricked the same finger again hoping to get another sample going and managed to get a sample that looked like it might be fine, but just in case she pricked another finger to get another sample so that we will hopefully have 1 useable sample. So in the end Bianca got 4 fingerpricks. She is so brave!

So in the end our hospital visit turned out to be a pretty long day.

On the way back home the nurse called to let me know that the preliminary results all seem normal and so thankfully it seemed to have worked.

Unfortunately this morning Bianca woke up feeling a bit unwell and I think we might be in for a quiet weekend.

Oh Christmas tree...

Tomorrow morning Bianca has a Christmas sing-along at her school. They asked if the kids could wear a green and red costume of some sorts. So I took some old green t-shirts that we had lying around the house (and that we aren't wearing) and then I tried to somehow construct a costume resembling a Christmas Tree. Unfortunately I had to resort to hand sewing as I don't own a sewing machine so am a little bit limited in my sewing ability, but I'm happy enough with it.

To make it easy for Bianca to take off, it is tied together with ribbons in the sides. She will also be wearing a necklace (which you can see in the first photo) that looks like Christmas lights and actually lights up as well. It is pretty cool.

A discussion - fake / real?

Today was a pretty busy day for us and in a way it ended up good that Caitlyn didn't do her ballet show otherwise it would have been much busier. This morning Bianca went to a birthday party and Caitlyn and I waited at home until it was time to get her. During that time I started planning the costume Bianca might be wearing on Monday for her class Christmas singalong (it is meant to be something red and green). Then it was time to get Bianca and we all set off to the CCF Christmas party. It was such a lot of fun and it was so good to catch up with all the other oncology families. We got there a little bit late, but the kids had a chance to listen to story time with Fairy Trina (or something like that), get a balloon from the clown and Bianca also got to decorate a biscuit. They had a small petting zoo, a bouncy castle and unfortunately the line was too long for facepainting.


And then the highlight - Santa arrived! Bianca looked at him as he got seated on his special chair and she said "he's fake. I know he's fake". I ignored the comment because I wasn't in the mood to go into a whole discussion about whether Santa is real or not, especially since Caitlyn very much still believes. And then Santa called Bianca's name and she went up, got her present and when she came back said "wow! He's the real Santa". Turned out this Santa had a real beard and so of course he must be Santa. I couldn't help smiling!

I wanted to take a whole lot of photos today, but unfortunately the flash on our camera decided to stop working. How frustrating!