The magic number is 100

Tonight marks the 100th night spent as inpatient at Wellington Hospital. Fair enough, not consecutive days spent in hospital, but of the 321 days since Bianca was first admitted way back 2 June 2007 and the 318 days since diagnosis (5 June 2007), Bianca stayed 100 days in hospital with various admissions. Wow, that is mind-boggling. 100 days where Bianca wasn't able to sleep in her room and in her bed. 100 days that as a family we were split up with one of us staying at the hospital with Bianca and the other at home with Caitlyn. Of these 100 days Bianca spent around 69 days in isolation.

Today was a frustrating day. We were meant to meet with the Christchurch doctor who comes up once a week at around 10am, he was quite busy, but of course nobody let us know this (and we found out only around 10:30 am from the registrar that he was running late, but with no feedback on how long he would be) and eventually only arrived around 12. I was disappointed because by then Terence had to be at work for a meeting and Terence really wanted to be in this meeting. But anyway, that's how it goes I guess when this doctor really only has a day to catch up with all his patients, management at the hospital, do all his theatre cases and still fly back.

We were also told that our locum won't be with us anymore from Monday. I'm really sad because we really liked him, he was great with Bianca and we felt comfortable with him.

So it almost feels as if we are back to square 1, it doesn't feel very comforting knowing that our specialists are located in Christchurch (even though they say they are only a telephone call away), but if something happened late at night or during a weekend, we will need to rely on the registrar and relevant paediatrician on call to interpret all possible signs and discuss this telephonically with somebody so that a decision can be made. This journey has taught us that things don't always happen according to the book. More often than not there will be something subtle indicating that something might not be quite right. I mean we've even had a situation once before where Bianca complained of a sore tummy and it turned out to be an infection. And she presented a mystery rash once, had an unexplained viral infection, severe reaction to one of her treatments as well as a bronchospasm that required immediate assistance and let's not forget about the kidney stones and shingles.

The comforting thing is that at least by October we will have our 2 paediatric oncologists. I just wish October comes around really fast!

So when the doctor eventually arrived by 12pm he discussed that the shingles most likely reacted to the Dex as the Dex also attacks the Lymphocytes which is needed to fight viruses. So they took some blood to check Bianca's immunoglobin levels as they might possibly be a little bit low or border-line. If that is the case then Bianca might have to get monthly 1 - 2 hour infusions to bring her immunoglobin levels back up to help fight things like shingles.

We are likely to still be in isolation this weekend still on high dose IV Aciclovir and once Bianca is discharged she will have a week on oral Aciclovir (probably around 5 times a day) before she will start with some of her treatment (but not the Dex initially). And we are likely to continue with the oral Aciclovir going forward - oh goodie, another ongoing medicine added!

I also asked about starting school and the doctor's opinion, definitely not until winter and spring are over, so we can possibly consider the last term of this year. I understand the reasoning, but it is disappointing as Bianca is just so ready and I really want her to start interacting with other kids for a change. Apart from seeing some of the other children at the hospital, these past 10 months Bianca has maybe only had 3 play dates or so and 2 visits to her old day care center. And the way things are going now, I am doubtful we would be able to do a birthday party for Bianca when she turns 5.

But here is my little girl, 4 years old, full of smiles, finding a reason to have as much fun as possible and not once has she ever asked "why me?" - even after walking this road the past 321 days and spending 100 days in hospital of which around 69 days in isolation. So we keep walking every single day, one day at a time and every single day that we get through is one day closer to that last day of treatment (11 September 2009).


Anonymous said...

Hi Lea and Bianca,
Wow 100 days sure is a long time. I'm so sorry that you have had to go through all that plus the added stress of having the oncologists so far away. I find the whole hospital system frustrating enough here with lots of insite oncologists. So I can only imagine what it must be like in Wellington.
Your parcels for the boys arrived late yesterday. Thank you so much. They both loved opening the presents and you bought such perfect things for each boy. That was so kind of you considering all that you have been through. A million thanks from us.
Re Pete's last day of treatment, it's 20 August 2010. Too far away to think about.
Any way, thanks again for your kindness and I hope things start improving for you soon.
Take care,
Bridget and Peter

Hannah said...

Hi Lea
You don't know me but my name is Hannah, I'm 18 and live in Perth, Australia (originally from Wellington, NZ) I came across this site while browsing through a fellow ALL fighter's site, Taylor Warren.

Bianca seems such a beautiful little girl with a heart of gold- so cute! I do hope she is feeling well and I'm sorry you guys are going through this.

I've made a little video montage for Bianca please watch here
I hope you like it :D

I have also made one for Taylor, you can see here

Sending my love and best whishes to your whole family!