2008-06-23

Looking closely...

Despite, the non-so-positive start in our "new" rental home (well it's not quite home yet), we've managed to do a bit of sight-seeing which was quite nice. Terence and I can remember some of the sights from when we stayed in Auckland a couple of years ago, but Bianca doesn't remember anything and Jody has never been here.

Browns Bay is a really nice, relaxing kind of area. The beach is really nice and it has a wonderful park for the kids.

The weather hasn't been the best and so our sight-seeing has been a bit limited.

Really close to our house we are able to watch some Pukeko birds as they walk past every so often. I've never seen these birds in real life before (except in art work and on greeting cards) and so this has been quite fascinating.

Today, I got a call from the local CCF offices and Bianca and I will get to meet them on the 7th of July when we go in for Bianca's monthly hospital visit and treatment. It sounds as if on the 9th they will have a craft morning for the kids and I think Bianca will be so excited to go.

At the moment she is a bit on the lonely side because we haven't been able to start making friends (with kids), but hopefully soon we'll be able to catch up with some people.

I'm also torn between wanting to send Bianca to school in the next term and wanting to keep her home to limit her exposure to things like chickenpox. In one way I know that there are other oncology kids who go to school and for most of it they seem fine, but we've had a really rough time until not so long ago with hospital admissions and one infection after another. So it is a tough situation.

When you look at Bianca, she seems fine. She has a head full of hair (still short, but definitely growing), she seems to have lots of energy and is even interested in eating (although is pretty fussy, but lots of other kids are too). So sometimes (when she is like this) it is easy to want to forget that she is still sick, that she will still get treatment for the next 15 months, that she is still at risk of picking up some or the other dreaded disease, that the daily medicines can make her counts drop which would then put her at greater risk.

For most of it, Bianca is happy, but sometimes when you look closely, you realise how lonely, isolated and boring her life has become to some extent. We try hard though to make life as normal as possible, but to date it has been a challenge setting up play dates with her friends, either because she hasn't been well enough or they haven't been well enough. And finding suitable activities is also a bit of a challenge because it is so hard to control things like chickenpox exposure.

The Christchurch doctors are not very keen that Bianca starts school just yet. So I will discuss with the Auckland doctors and see what they say. I'm hopeful that they will continue the IVIG transfusions (I do believe that it is because of these transfusions that Bianca has been so well) and maybe if she keeps getting these, she will be fine to start school. So we'll see.

As always, we need to just take one step at a time. At least (thankfully) Bianca is not isolated anymore and so when we go to hospital on the 7th she'll actually be able to play in the play room and mix with some of the other kids.

3 comments:

Anonymous said...

Hi Lea,
I'm glad to see that you made it up to Auckland ok. Sorry about our hideous weather.
And I was horrified to read of the state of your new house. The owner should be shot.
When you are all settled in , we should get the kids together some time. Although we all have colds at the moment.
Take care,
Bridget and Peter

theysaywordscanbleed said...

i hope she gets better soon.

arlene,

West Bremerton florist

Anonymous said...

Dear Lea,
I have been following your journey since 12/07 when our 2 1/2 yr old grandson was diagnosed with ALL. I read your accounts everyday amazed at how well you and your husband are handling your situation. Your daughters are absolutely beautiful; you are so blessed.
I wanted to take the time to write to you and wish you luck in your new home and with your future treatments with Bianca.
Our grandson just completed intensification phase for 6 months and just now has started long term maintenance. He continues to do very well with his treatments.
Take care,
A caring Mother/grandmother
NY USA