superhero

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Saturday, March 31, 2012

A broader view...

Chemo day went relatively well.  It was only 3.5 hours this time, and it was only longer because we ended up needing to see the ear/nose/throat specialist, and it took a while to track them down.  Charlotte has had a hoarse voice (the kind that would get you a job with one of those late night commercials advertising 'friendly' chats) since Sunday.  I read it was one of the rare side effects of one of her chemo drugs so mentioned it upon arrival (along with the others - hair loss, her right ear is bothering her, and the moodiness).  So - poor Charlotte had to have a scope (teeny tiny camera) put down her nose so they could look at her vocal cords.  They were checking for paralysis - and thank goodness everything looked okay!  Our little trooper handled it quite well!

They also discussed her biopsy results from the Friday before - and said Charlotte is "almost in remission".  Her 'blasts' (blast cells are precursors (stem cells) to all immune cell lines) were 84% at the time of diagnoses.  They need to be <5% to be termed in remission.  Her blood smears from last Friday showed <5% (yeah!), but her biopsy showed 9%.  Many other hospitals just use the blood smears - and it's kind of odd the large difference.  The Dr. said could have just been a pocket - and the biopsy wouldn't differentiate those blasts that are dying.  Either way - she is almost there - and doing great!  He also said it was great that we had been home for 2 weeks with no infection!

We got a copy of the whole treatment plan - and it's a lot longer and way more intense then we had originally believed.  The maintenance phase likely won't happen until Christmas, and even in maintenance, she gets chemo pretty much every day.  We will only be into the clinic once every 28 days, but drugs will be administered at home. 

Here is a quick and dirty summary of the treatment plan:
  • Induction Phase- we will finish this on Thursday, and then have a one week break before the next phase
  • Consolidation Phase- 56 days.  The first two weeks we will be at the hospital 4 days a week, then once a week for 2 weeks - repeat.
  • Interim maintenance Phase - 63 days which will include 4 overnight stays at the hospital.
  • Delayed intensification Phase- 56 days (we didn't really talk about this phase)
  • Maintenance - 2 years - in the clinic once every 28 days.
  • Each phase has a mix of oral and IV drugs - so many get administered at home.
We had no puking last night - wahoo!  I don't know if we are just getting better at trying to prevent it - or if Charlotte is just adjusting to the treatment.  Her platelets were low on Friday, but instead of giving her another transfusion, we will go back on Monday to check how her blood levels are then, and get a transfusion then if needed.

My reality check of the week - there was a 5 week old baby in the clinic yesterday.  It broke my heart and I have been thinking about that poor mom ever since.  I remember the stress of newborn life - and couldn't imagine having to deal with cancer on top of that.  I am thankful every day for my blessings in life - a tough little girl, a happy little boy, the best partner I could ask for in this battle - and a frickin' fantastic army behind us!

2 comments:

Grandma! said...

You are such a strong woman - my daughter!!! I love you all so much!!! So grateful for all the loving support you have - and you all deserve! <3

Scott & Nadya said...

I just randomly thought I'd check your blog to see what was new with the Lageston's since we had not seen Stefan since the holidays... Of course I was expecting to see some new family pictures and read about Stefan's plan to go back to work.

Instead, Scott and I are both in shock and feel so incredibly sad. We can't imagine what life in your shoes must feel like.

At the same time, I am both amazed with you, Taleen, and admire you deeply. Your ability to keep us all up to date, and to provide difficult details through such an up-lifting, positive lens is incredible. After the initial tears I find myself smiling as I read much of your blog. As the reader, you make me think about what's most important - the here and now - and I love reading about Charlotte's smiles, how much she's eating, her tv addiction, new haircut, etc. The picture of her chowing down in the hospital made me laugh out loud! She is surely going to grow up to be one amazing woman, just like her mom.

Please know that our thoughts are with you.

Scott, Nadya, Jonah and Summer