Thursday, November 3, 2011

Thursday morning update

Bianca and I are in the local paper!  On page 2.  If you visit this link and you register (which is quick and free), you can read the online version of our local paper and see us on page 2!!!  Unfortunately the reporter made a bit of a mistake (can you spot the mistake?) and unfortunately they did not really say what else will be happening on the day.  I would tell you about another article in the paper, but I'm sure Paul will want to write all about that.

For the first time in forever a bit more than 2 weeks my ankle is feeling better.  Not 100% yet and it depends on the time of the day, but I am able to once again walk like a human and less like a penguin or something. Later today I will try to walk / run again as per the suggestion by the physio.  I did on Tuesday night and the running part was really uncomfortable still and I was rather disappointed to learn from the physio that I'm walking / running too slow.  So I'll have to try a bit harder!  The cycling is much more comfortable and today I managed to do around 16km.  We won't speak of the time it took me because I found the wind a bit of a challenge and then I found the route I ended up taking at some or the other lagoon / park area had a narrower path and I had to keep slowing down for people walking their dogs.  And of course our street is a struggle with the uphill bits.  Rather disheartening when a lady in a double pram with twins (and a baby in a seat on top) was able to walk faster than I managed to cycle up that bit.  But by then my legs were complaining!

Yesterday Bianca's cheerleading uniform arrived and she looks so cute in it.  Lots of excitement around here.   We're flying to Auckland on Saturday morning on a 7am flight (yawn!) - just Bianca and I because Terence can't really take much time off work at the moment and the cost to fly all 4 of us is just too much at the moment.  That reminds me - I have to still book the rental car so we can easily get out and about.  I'll have to share a story at some stage with you on the very first time I visited Auckland all by myself...

Bianca is also extremely excited because her Camp Quality letter arrived yesterday.

For those of you who don't know what this is about - Camp Quality is a camp for kids (aged 5 - 15 I think) who are currently living / previously lived with cancer.  A camp where for a little bit they are able to just forget about being sick and just being a normal kid doing normal things.  Kids with cancer are isolated a lot of the time when their counts are too low and other kids might have a runny nose or a cough or some other illness symptoms, so this is a safe camp for them.  I'll never forget - in the first 6 months of treatment Bianca only ever had 4 play dates.  More often than not she was in hospital or in isolation (in total she spent 117 days in hospital of which 112 were where she was in isolation or her counts too low).  Whenever we went to the shops to buy milk and bread and something for dinner, her standard question to me was "Mummy, can I come also or are my counts too low?" (And she was only 4 at the time).  There was one day where we were at the park and she quietly sat at the top of the slide.  Our au pair at the time asked "what's the matter Bianca?" and Bianca said "I wish I had a friend who could go on the slide with me".  Yes, cancer is a lonely time and so Camp Quality is a welcome break from things like that.

So in January Bianca will go on Camp Quality for a week and she'll have a volunteer companion with her during that week.  And the theme?  HARRY POTTER!  And of course we are Harry Potter experts :-) (Click here). 

We have now possibly entered another phase of Bianca's cancer journey.  Bianca is an extremely bright kid.  And I'm not just saying that because I'm a proud parent, she's been assessed and has been making a lot of progress really quickly from the start of school.  To give you an example, she started school in July 2008 shortly after turning 5.  She was a new entrant for 6 months.  In February 2009 she started Year 1 as a 5.5 year old.  Shortly after that they started her on proper spelling homework (she was 1 of 2 who started with this at that stage), because she was already reading past Orange level.  I'm not all that familiar with reading levels, but from what I can see it means she was reading past 6.5 year old (and she was only 5.5 year old).  Right now her reading is way ahead of where she should be, she has a great vocabulary, Glossary is really good, she is one of the best readers and spellers in class and she's doing well with math too!  Bianca's definitely inherited her brain from Terence (must be because I still have mine...) But seriously, Terence was the kind of kid who taught himself to read at the age of 4 and he finished school and passed it and got loads of distinctions without ever opening a book (yes, I'm jealous because most of the time I had to work my butt off just to pass).

One area where we've noticed that seems a bit of a struggle is Bianca's writing.  She is certainly capable and she is a pretty good writer, but she is less focused on it and easily distracted when she has to do it.  Now it could just be that she really doesn't like doing it and feels bored with it.  I'll never forget one day when I was meant to study for a test (maybe it was history or something) and I fell asleep on my bed (and I must have been about 10 at the time) and my mum came to wake me up and said "you will pass matric even if you are 80 years old!).  Do you remember Mum?  And I was terrible at math (and it didn't help that the teacher was really scary).  When I went to high school and had Accounting I didn't always do my home work and didn't always pay attention in class.  I enjoyed the subject, but it was such a mission to have to sit down and do the homework.  So that year I nearly failed the subject!  There were other areas I did really well - languages, creative writing, Business Economics...), but some I didn't always do my best.  So it could just be that with Bianca, that it is one of the least favourite things she has to do.

On the other hand I can't help wondering if we are not perhaps dealing with some late effects from being on treatment.  Bianca wasn't at school before she was diagnosed with cancer, so we have no comparison.  We have noticed that she gets distracted easily at times and doesn't always concentrate as well as she should.  She also seems forgetful at times.  Things like not remembering what she may have done at school that was interesting or sometimes who she played with or if I ask her something, sometimes she has to think really hard to find the right words.  So it is a bit of a worry at the moment.  Looking at some of the websites out there things like memory and concentration could definitely be affected by chemo and the one website mentioned that kids with ALL (Acute Lymphoblastic Leukemia) and those who received methotrexate or chemo injected into their spines are at higher risk of struggling with memory and concentration later on.  So this morning I chatted to somebody from the hospital to see what we can do because I really don't know.  Is she just being a kid or is this late effects???

Sometimes people think that just because treatment ended 2 years ago, our childhood cancer experience is finished, done with, something of the past.  Certainly when you look at Bianca you'd have no idea she was ever sick.  The only visible indication is a scar on her chest where they put her port in in 2007 and took it out again in 2010. But the truth is it is very much still a part of us.  There is always the worry about a relapse, the worry that Bianca might develop another cancer perhaps or if she will be able to have children one day or not.  And then late effects is something that could also happen at any stage.  Partly the reason Bianca still gets regular checkups and will still for quite a while yet! And this is just life really!


Paul said...

Great the ankle is getting better. You're in capable hands with the physio. Cycling 16km is a good effort. Bianca is sure keeping you busy. All the best for Auckland!

Sarah said...

Your post today Lea resonates so much...I hope they were able to give you some advice at the hospital. Is Bianca seen at the LEAP-Late Effects Assessment Program clinic yet? I can't remember when they start it? Usually a certain time out from the end of treatment and the initial remission period. They have a great clinic at Wellington and in Auckland and Christchurch, where the emphasis is on monitoring for potential but not definite LE's which allows for quick referral back into further care as necessary.

It's a good clinic, fairly comprehensive :) and Long Term Follow Up it certainly is!! I've not long been transferred from paediatric follow up (at 25!) and will remain followed up for the remainder of my life, albeit much less frequently nowadays :)

You're right, it is still part of your lives, in a way it always will be....and at times it will be about the unknown...the best we can do is be aware and be're already doing that so Bianca is in good hands...and you know you can ask me anything at any time :) Haven't had much of a chance to talk about LE's with you since we met, we pretty much got stuck straight in to fundraising ideas!! If there are issues identified there are interventions that can take place, but if there are any concerns they're likely to monitor them well given how rapidly she will still be developing for a while yet :)

From what I know of Bianca so far, whatever the outcome she will tackle it head on and use her existing strengths to get her through any future battles...let's hope they are just of the everyday kind :) either way, she has lots of people who will be by her side the whole way...cheering her on for a change!! I bet you both have a great weekend in Auckland :) Should be a lot of fun!

And ...HARRY POTTER...I picked the wrong year to not be able to attend Camp Quality!! :( I'll just have to persuade them to do it again in 5 or so years time!! 2013 is a little too soon :S I bet she's even more excited than last year :)

That's great you're getting back to being able to get out cycling and running's all about climbing the mountain to see the worth it in the end, and often along the way, but it'd be nice if you're ankle didn't have to hurt so much during the process...and don't worry, it's hard to cycle uphill if you're not used to it :) and different to buggy walking :)

I bet you're excited to see how Caitlyn finds school :) what she'll love and be good at or may find more challenging :)

As for finding both the Whites and the Forsters in the same paper! Lot so celebrate all round :)

(Sorry for the length of this comment!)

blackhuff said...

Can understand why the cycling is much easier than running or walking. Well done on the 16k you did.
Going to go over there now and register :)