Visit to Starship Hospital

Today was a long and busy day. It started off at 6:30 when Bianca had breakfast and then Terence, Bianca and I left for Starship Children's hospital in Auckland city for Bianca's first appointment.

We had to be there at 9:30 to get bloods done at the lab first (and not a single tear in sight).

And then we met Doctor MacFarlane at 10:30 for Bianca's check-up. I was impressed, he was actually on time! We really liked him and I liked the way he immediately acknowledged Bianca. That was so great.

We discussed Bianca's medicines for this round and the decision was made that Bianca will remain at 75% dose of oral chemo (no change there), Bianca will still get 400mg Aciclovir 4 times a day for now (so no change there), Bianca will continue getting her IVIG transfusions every month (I'm pretty glad about that) and we are starting Dexamethasone again. I have some mixed feelings about this because I am so scared it makes the shingles come back again, but I fully understand that it is a really important part of Bianca's maintenance treatment. So I guess at the very least we will be in for a couple of days of increased appetite (that will be great!) and possibly some moodiness, sadness (hmm, not so good) and praying really really hard that those shingles will just stay away!

The doctor also mentioned that when we reach the end of Bianca's treatment they will do a blood test and that will tell them whether Bianca retained any immunity to illnesses that kids usually get immunised for or not. And all the illnesses where she didn't retain any immunity, we'll just have to do those immunisations all over again. So here's hoping she retained all or at least some (hey, I can hope can't I?)

And then we discussed school. Doctor MacFarlane feels really comfortable that Bianca starts school. Her blood levels have been stable, she's been getting IVIG transfusions and he feels she will be just fine. I am so so happy about this and now begins the search for a school.

What was a bit different is that they give you a sheet summarising weight, height, medicine schedule and it shows the next 2 monthly appointments. They cannot guarantee which of the oncologists at Starship will be seeing us each visit, but these next 2 visits will be with Doctor MacFarlane. They also gave us the form for bloods for the next visit and of course we got our scripts (for 3 months' worth of medicines).

After we had Bianca's check-up, they started Bianca's IVIG and her Vincristine (which was just a push through her port) and then the long wait. We had to be in isolation because we came from a different region and each region might have different bugs. Nurse Nicky who looked after us called the play specialist to bring some toys for Bianca. We didn't expect to be in isolation and so we didn't really come very well prepared. The play specialist didn't like being called "the play lady" and I couldn't help smiling as we are just so used to Kate (the play specialist for Ward 18 in Wellington) who really doesn't care whether you call her "the play lady", "Plate (short for Playing Kate)", or whatever. So that will be interesting to get used to.

Eventually it was time for theatre. They are much much busier at Starship (which I expected, but was a bit of an eye opener). Bianca was pretty hungry, but she was so good. Theatre was also a bit of a different setup and the waiting area is really informal with toys around.

As usual no problems with falling asleep.

I then went to the pharmacy to get Bianca's script done and to look for food (by then I was totally starving). Usual wait and I left, armed with all our medicines for home.

After recovery we had to wait a little bit and then we could go home. Oh and during theatre they did 4 swabs to test for Wellington bugs (as Wellington is in a different region) and they also de-accessed Bianca's port (very different to how we've done it before).

So all in all a very busy day. It was a good day and I am so glad about the opportunity to start school!

So let's hope for an uneventful round 3 of long term maintenance!