A busy day at the start of maintenance

Today we started Maintenance. We had to be there at 8:30 this morning and not even a single tear when Jo put Bianca's wiggle in. I'm just so proud of her!

We waited around until 10:30 when Bianca and two other ALL patients went up to theatre. As far as I know they do it in order of age and Bianca was the oldest of the three, so we needed to wait. And then it was waiting. Bianca took her time waking up, but they were not concerned.

So Bianca had a lumbar puncture under general anaesthetic and during this procedure they injected some Methotrexate into Bianca's spine.

I have to wear this funny looking outfit before I can go into theatre with Bianca.

Each time Bianca goes to theatre they send all her information along for "easy reference" if need be.

This is just after Bianca was wheeled into theatre. She is not at all scared of the experience.


Bianca watched as they administered the general anaesthetic, it only takes a few seconds and then she falls asleep and that is usually my cue to leave.

After Bianca recovered we went back to the ward and waited until they were ready to administer Bianca's Vincristine through her port. And then we eventually left to go home.

On the way home we had to go past the pharmacy to collect Bianca's medicines and then finally by 3:30pm we got home. All I can say is that I am quite exhausted after today. There are few things as tiring as doing nothing but waiting.

So now we have to be back in a month's time (so that makes it roughly the 15th of Feb). I'm still trying to understand how this will work as far as neutrophils are concerned and I'm not too sure if we are supposed to be treating Bianca as neutropenic for this month or not - we won't have any blood tests until we go to hospital again. So I emailed Jo and I will see what she says.

I'm also curious what sort of end date we are looking at, but it seems that it might be 2 years from today and not 2 years from the start of Interim Maintenance (which was in September) as I initially thought. So if that is the case, then we will walk this journey until roughly around January 2010.

So in maintenance each phase is 84 days long and then it is repeated and then repeated and so on. And basically each phase will be like this:

• Methotrexate (as a lumbar puncture) [chemo injected into spine] - Day 1
• Methotrexate (oral chemo) - weekly starting from Day 8
• Mercaptopurine (oral chemo) - Day 1 - 84
• Vincristine (chemo through Bianca's port) - once a month
• Dexamethasone (steroid) - 5 days each month
• Co-trimoxazole (antibiotic) - 3 days each week

Kate, the play specialist made the most wonderful "learn how to swallow pills" kit. Bianca can't swallow pills and although it is okay for her to chew her chemo pills, it is better if she is able to swallow it. So now we will practice every single day. So it has lots of tips and we will use some really tiny candy / cupcake decorations and work our way up to something bigger until she is able to swallow the size of her pills. The kit is filled with fun pictures like explaining where the pills go when you swallow it and also a really cool star chart that we will be using. Thank you so much Kate, I'm really excited to get going!!!

This afternoon we noticed Caitlyn has been standing for a second at a time all by herself without holding on to something and she did this a couple of times. I think she'll be walking before too long!

Medicines today:

• Methotrexate - lumbar puncture (chemo injected into the spine)
• Vincristine - administered into port
  
• Dexamethasone - 2 tablets twice a day
• Mercaptopurine - 1 tablet a night