A busy Day 29

Today was a very very busy day for me. Started off with taking Bianca to school, briefly chatted to her teacher reminding her that it is "steroid week", dropped off Bianca's Acyclovir tablets at the office (the school has to give Bianca's lunch time dose to her). So that was Bianca sorted. Then it was time for Caitlyn's jumping beans. She had a great time and loved running from one activity to another (have you ever tried keeping up with a 1 year old going crazy? Quite an exhausting job! And every so often she will tempt me by sitting on the small stage in the hall, patting the space next to her for me to sit down, just to get up within 10 seconds running to the next activity). The group activity is still a bit of a challenge, but we are getting there. I was pleasantly surprised to find that one of the mothers used to work at Starship so it was nice chatting to her. After Jumping Beans, we quickly dropped Caitlyn off at home and then it was time to get Bianca from school and to make our way to the city for her monthly hospital appointment.

When we got to the lab for Bianca's finger prick I thought we would be in for a long wait as the waiting area was pretty packed, but it soon cleared and when it was our turn, Bianca was an absolute star. No tear in sight! I remember the first time she had to get a finger prick - she was absolutely terrified and here she is today, confidently walking in, sitting on the chair, holding her finger and no complaints whatsoever. When we were done there I told Bianca how very proud I was of her and she said "I didn't cry, but it was sore".

We had time for Bianca to play in the play area and we ate some lunch before making our way to Ward 27. As always Ward 27 was pretty busy. Just as last time Doctor MacFarlane was right on time. What really impressed me about him was that it was all about Bianca. He came to the waiting area and called: "Bianca" and then as we entered his office he asked her how she was doing and whilst I did all the usual discussing how things have been since the last visit, I really felt that Bianca was more important than me. And that is right - after all, she is the patient, not me. So that was pretty cool. At one point Doctor MacFarlane said to Bianca that doctors have to write a lot. We asked Bianca if she would like to become a doctor one day. "No". What about becoming a nurse? "No", or maybe a Play Specialist? Her face lit up - "yes, she would love to become a Play Specialist". I said "but I want to become a Play Specialist" and she said "yes you can, but not at this hospital".

Bianca's counts were really good. Too good, and our neutrophils are sitting at 5. So they upped Bianca's dose from 75% to 100%. They aim to keep the neutrophils between 1 and 2 and if it dips below 1, then they reduce the dose of the oral chemo to give the body chance to recover and if it goes above 2, then they up it so that we know the chemo is doing its job. We also discussed Bianca's cough, but the doctor is not worried and her chest sounds clear. That's good to know.

We also had Nurse Nicky and just as last time she was great with Bianca. We really are in good hands! Don't get me wrong, I really miss the Wellington bunch. They were there from day 1, they saw our tears, our confusion, they were there each time we were stuck in an isolation room, our ups and our downs. They became our friends. But it is good to know that here at Starship we are in good hands too!

Today was Day 29 of 84 days of round 3. And basically it meant getting Vincristine at the hospital, we started our 5 days of steroids and Bianca got her monthly IVIG transfusion. Thank you so much to all of you out there who donate blood, platelets and plasma. You are making such a huge difference to kids like Bianca! The Vincristine itself is really quick, the IVIG takes around 2 hours to run so it was a little bit of a long afternoon for us. But we took the opportunity to do Bianca's homework and she watched a DVD and then we got a really nice surprise from Barbara - the Play Specialist (I think her name is Barbara). She brought Bianca a book (that she can keep). It is all about a cat living in a library and Barbara thought this would be great as Terence works in a library. Wow, thank you so much Barbara. We also got another really exciting call - but more on this a little bit later...

So that was today.

It feels good though that things are pretty ordinary. It feels good that Bianca is able to go to school, have friends and just be like any other 5 year old. "Now" feels good. Of course "tomorrow" may very well be very different, but "now" is great - and if "tomorrow" turns out difficult or challenging - well then we'll just sing "the sun will come out tomorrow".


Anonymous said...

I'm so glad that things are settling down for you guys (except for the house from hell). It sounds like Bianca is doing wonderfully at school and clinic.
I loved the video of Bianca and Caitlin too. Caitlin has the most wonderful laugh.
I hope the steroids go ok.
Take care,
Bridget and Pete

Anonymous said...

I loved the video of Caitlin and Bianca. Caitlin's laugh is delightful and contagious. Pure joy!
It is wonderful to read about you and Bianca's "normal" days. Hopefully they will continue forever for her.
The 5 days of steroids are so difficult. Hoping this month will be somewhat easier.
I love your ticker counting down the days. (we have over 800 to go). Our grandson was diagnosed with ALL 12/11/07.
I read your blog and think of you and your family everyday.
Caring mother/grandmother NY USA