2008-12-31

Goodbye 2008, hello 2009

And so we reach the last day of 2008 and as Bianca and I will wait for 2009 to start from our isolation room 7, Ward 24 B, Starship Hospital and Terence and Caitlyn will start their new year at home, we reflect on the year that was and the year that will be.

We have a really nice view of the Sky Tower from our room and the one Play Specialist indicated that they often have fire works from the Sky Tower on New Year's Eve and so we'll wait up for that and see if we can see anything.

This year certainly had an interesting start when Bianca got shingles, but in the end it turned out good, it is because of the shingles that Bianca started getting monthly IVIG transfusions and daily Acyclovir as it did make going to school less risky. It will always be risky as long as Bianca is sick, but she is a bit better protected against some things.

Speaking of school, it is just such a blessing that she was able to start school in July. At one point we were told by the Christchurch doctor that we had to wait before starting school. And then we came to Auckland and it's funny how things work out because when we looked for our rental home it was with the idea that school wasn't a possiblity at that point in time and we didn't look at school zones. And so it was a blessing because when we were given permission by the Auckland doctor that Bianca could start school we found that the one school in our zone was a really good school, small and very understanding. Bianca loves it there, the education is good and we'll never ever take going to school for granted.

Caitlyn going to daycare is another true blessing. For so long we had to keep her away from other kids to prevent her picking up things like chickenpox and measles and things like that. We still have to be careful, there still is a risk, but certainly now that Bianca is going to school and her counts have been fairly stable, we feel more confident about managing the risks. And once again we were blessed to find a centre really close to home, with good hours where Caitlyn is really happy.

For most of this year it's been fairly settled. Yes, the dreaded steroids are always a challenging time for us, but for most of it Bianca's counts have been stable and whilst it is a bit of a shock that Bianca's counts suddenly dropped, it is really just a reminder that we should never get too comfortable and always expect that things can change.

I have to say that there are so many people that we need to say thank you to.

My mom. She has been writing so many emails to us, often more than one a week and always sharing her news, commenting and responding to what's been happening in our lives and of course my good friend Riki with her news. These people as well as a number of others have always been so actively supportive and it really feels that they are part of our story.

A sad part of our journey is that there are some people who used to be in regular email contact but who stopped writing to us completely, one mentioned to us that he doesn't read our blog at all (which really is fine), another assured us that they saw themselves as completely supportive even though they don't ever write to us (except when they are looking for something from us) - not with their news, not in response to what happens in our journey. But that's life and we've come to accept that this is how it must be.

So thank you to those people who remained in contact and those who send messages through my mom (she often writes to me about all of you), thank you so much for your active and sincere interest. It means the world to us to have you part of our journey.

The internet certainly has become a huge factor in our journey - our blog, other blogs and journals and Facebook (and certainly Facebook has enabled Terence and me to stay in touch now during our hospital stay) - all these have enabled us to meet some wonderful people from around the world. Some with similar challenges to us, others with their own challenges, but ultimitely a whole new support structure that we didn't know existed until we started our journey. There are too many to mention and I don't want to leave anybody out. You all know who you are. Thank you so much for being there for us.

And if it wasn't for our journey we wouldn't have met people like the staff at Wellington hospital and Starship and the wonderful people at CCF and of course all these other parents that you meet along the way who have now become life-long friends. Friends like Olivia, Catherine, Rebecca, Shanell, Hannah and Bridgit.

And so I would like to wish you all the very best start to what I hope will be a wonderful, successful year where your dreams will come true. We feel confident that 2009 will be a great year and for us, the end of treatment is only another 8 months away, we are so very excited about that!

And now I say goodbye and farewell 2008 and hello 2009!

7 comments:

Anonymous said...

Lea,
I am so sorry to hear that Bianca most likely won't be going to Camp Quality. I hope that those fevers stop soon so that life can get back to normal again.
It was great seeing Bianca the other day and finally getting to meet Terrance. He seemed so comfortable at hospital. I always go stir crazy if we are there for any length of time.
It has been great knowing you this last year. You are always such a wealth of information, and I really appreciate your support too.
I hope that Bianca will be home soon.
Take care,
Bridget

Anonymous said...

Happy new year to all of you! Now, I hope everything goes well for you, that you will be discharged soon and Bianca to feel better!
I miss you, and you are constantly in my thoughts! Give the girls big hugs from me.
Lots of love
Sanna

Suzanne said...

And a blessed new year to all of you!
Ive just been catching up(on vacation for the holiday).
I am so sorry for darling Bianca.
I will keep you all in my thoughts.
(and terrence too for all the HSM viewings!)
Suzanne

dcapobres said...

I have just caught up on the blog after a busy holiday season here in San Francisco. I was sad to hear that Bianca was admitted. I hope you are discharged soon and that you start off 2009 with steady and reliable counts. Thank you for keeping the blog. Happy 2009 to everyone.

sharonvw said...

I really hope that you all at least got to see some fireworks tonight! And I hope that 2009 gets a whole lot better for all of you, especially Bianca!
Luv
Shaz

Anonymous said...

Happy New Year! I hope Bianca is discharged soon, and I hope 2009 is good to you, you deserve it!!!
~Ava~

Annie - Steven's mom said...

May love and light, health and laughter seep into every part of your lives; may 2009 be the best year yet and may you know that you have made such a wonderful difference to so many this past year.
From me - thank you!
love and light
Annie