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


Anonymous said...

Well done at making it to Maintenance, Bianca! It sure is a big step, and I hope you do a lot better in it than Pete is.
It's amazing that you don't have to go in every fortnight like Pete does, but it sounds good to me. I was also surprised that it is 2 years from now. I always thought it was from Interim Maintenance too.
You were so brave in theatre. It's still a big stressful experience for Pete.
Anyway, I hope the steroids and everything else go well.
Take care,
Bridget and Peter

Justin & Linda said...

oh boy... I was hoping never ever to see those stupid steroids again.... maybe we will get lucky.

That is crazy how different things are at different places. My mother in law and I take my son to his appointments each time. We have the lumbar punctures and bone marrows all done right there in the room with both of us. It is just like another part of the check up. I hold tristan up right because he REFUSES to lay back when they put his meds in. When he starts to get loopy I guide him down on his side. Then I stand where he can see me and hold his hand. If it makes you feel any better it is not bad at all! As long as they are good and drugged up they are perfect for the proceedure! Now twice before we started out patient treatment he was NOt drugged up. That was AWFUL! But now they know how much he needs and it works!

So is Bianca at 100% cancer free yet? Or is there still traces in there? Forgive me but I am not sure what to expect. If we maitenece just in case or if there is still some working its way out. Does that question make sense?

The meds you wrote down, most are what we have seen before so I have a feeling we might get around the same ones. The same names as the ones Tristan takes.

I notice when Tristan is on the Steroid (same name one you put but I cannot spell it for the life of me) his eyes look sunken in and it changes his face. It happened before and then went away. The 5 days the beginning of this year that we took them that same look returned. Do you notice anything on your daughter?

Good luck! You are in our prayers!