Friday, December 14, 2012


Miss Scarlett is home again.  She was completely stable for the last two days, has been off morphine for more than 24 hours, and is tolerating meals.  The PICU and neurosurgery staff felt that there was nothing they were offering that we could not handle at home (or get to the hospital in time to handle).  Since we are pretty experienced at handling neurosurgical recovery at this point, they don't hold her inpatient for the sake of observation.  They trust us.  So, they packed us up with some at-home pain medication, and sent us on our way.

Brain surgery to home in less than 48 hours.  Not too shabby.  She is still very drowsy, and has yet to tolerate being put down, but no one here is arguing with her.  Hopefully, we'll be able to downgrade her to the regular Tylenol tomorrow, and then she will be back to her trouble-making self in just a few days.

We will be taking it easy at home for the weekend.  We never expected to be home this weekend, so we have no plans, no obligations.

Last night, and again this morning, the neuro-oncology team from Children's Oakland came to speak with us, as we requested.  One of the doctors we met at the Pablove conference last month consults in Oakland 2 days a month, and that just happened to be yesterday and today.  He has very strong feelings on what the next steps would be, so we asked some preliminary questions, and have that information to consider.

Monday we meet with her primary Neuro-oncology team at Stanford.  I hand-delivered discs of her latest MRIs to them in Palo Alto this morning, so they will discuss her in tumor board, and then meet with us directly after.  I am not sure what their plan of attack will include yet, but I have a feeling it is going to look very different than the option already on the table.  I am having a hard time considering anything that would eliminate the team who we have relied on so heavily for the last two years.  They know Scarlett better than anyone outside of Chris and me, and have been with us through hell and back.  I can't imagine going forward without them.

I am not sure how we are supposed to make a decision like this.  I am sure we will find something that convinces us in one way or another, but it's all too big to conceive of right now.  We are currently scouring the internet for articles, journals or anecdotes of infants with recurrent high grade glioma.  Luckily, I guess, there isn't too much to sift through that we haven't already seen or heard about.

Everyone agrees on a few things.  They all want us to "enjoy" our Christmas, and not try to make too many decisions before then.  But the flip side of that, which they also agree on, is that we don't have long to ponder; if the tumor that was removed continues the observed growth pattern since September, it will basically double every 6 weeks or so.  It would be ideal to start treatment before any significant growth occurs (existing tumor is the main factor in success rates; less tumor to stop gives a decidedly better outcome).

So, we have about 3 weeks.  By the first week of January, she will be in some new treatment plan that will send our entire world into a tailspin yet again.


April said...

Sending love. Hope you are all able to enjoy the holidays.

child of God said...

How wonderful you are home and can spend Christmas there.
What a decision to make. I will be praying that God will guide you and give you clear direction.


Busygirl said...

Glad to see she's doing well.

Christine McLane said...

What wonderful news that she is recovering so fast and she is home. You both have done amazing and so glad to see her progress. Have a wonderful Christmas!

Christa said...

Continued thoughts and prayers coming your way! Happy holidays and glad to read you're home and the surgery went well.
--christa, oct. 2010 mom

Abby said...

I hope you have a beautiful holiday together.

I think that if you gather all the information and are patient with yourselves, the universe (or God, if you are a believer) will guide you to making the right decision without you having to work at it. You will know.

Sending thoughts of strength and healing to all of you.

Mommy2CJ said...

So many prayers being sent to you and your brave fighter. I am so sorry that she and the three of you have to endure this again. Praying for the team to come up with the best plan possible for Scarlett, to keep her healthy and tumor free.

Kristina and Aaron said...

We are sending warm thoughts and prayers from Arizona. Glad to hear Scarlett is on the mend.