Saturday, May 3, 2014

Okay? Okay.

This is going to be a long post, so to quote our friend Kate, you might want to get a cup of coffee.

A few days worth of information to catch up on, before the fun stuff.

First, tumor stuff:

  • During the first surgery in September of 2012, they cut out the majority of the tumor.  After the surgery, they take slices of the tumor to identify exactly what it is.  They then flash freeze the remainder in case they need to look at it later.
  • Those slices should identify exactly what type of tumor it is.  For example, going into the surgery they thought it was going to be a JPA, but the identification of the tumor came back as medulloblastoma.
  • However, about two weeks ago, just prior to the surgery, the DNA mapping (this is extremely new stuff, and we got into a clinical trial) of the tumor came back extremely abnormal.  The DNA of the tumor sample that they did was NOT medulloblastoma, but seemed to be a variant of rhabdomyosarcoma, a tumor type that exists in muscles, and not brain tissue.
  • What that means is that the original tumor might have been a combination of tumors (think two skeins of yarn woven into one scarf), might be a mutation of the medulloblastoma into something else, or might be something else altogether.
  • When they did this past surgery, there were two tumor sites.  They resected one site easily, and the other presented far more difficulty due to involvement with blood vessels and it's location. However, once again, the two sites seemed to be two different tumor types.
  • The identification of all this variance of tumor types is something that all the researchers seem quite interested in, as you might imagine, so they're pushing Amie's new DNA mapping through the system right now, to see what type of tumor was there that was growing so quickly.  We should know within the month what they think they're dealing with.
  • As Dr. Maher said to us post-surgery, even 5 years ago they had very broad categories for these types of tumors.  As they get to know more and more about these types of tumors, they are understanding that there are many more subcategories for each of these tumor pathways.  With those subcategories come different treatment types, and different behaviors.  
All of the above is not good information.  But it's better to have that information, than not have it.  We'll see where it takes us as we move forward.

Thursday was a day of healing and rest for Amelie.  Not much went on, other than watching a LOT of shows. They clamped off her intracranial valve and monitored her for 24 hours to ensure she wasn't in danger.

Friday morning (this is all me retelling the story through Shelley's observations, so bear with me) the team came to remove the valve.  First they had to remove the bandages, which gave Shelley a view to a massive pressure sore that was on her forehead.  Amie, being the trooper that she is had not complained about it, and has not since.  Also, she saw that they had shaved quite a bit of her hair for the valve placement.  

I don't know what it is about the hair thing, but man o man does it make me really, really sad.  I know she's going to lose all her hair again (or more...) through the next set of treatment, but the loss of hair makes it so, so much more real.  Anyway...

During the valve placement, they leave a stitch in place so that they can remove the valve and quickly close the wound.  Apparently when they did this, the CSF (cranial-spinal fluid) started gushing out of Amie, and would not stop with pressure.  They needed to put more stitches in, and needed to do it at that moment.  Without any numbing agent (as it would take valuable time), they proceeded to put 2 stitches in Amie's head.  According to Shelley, our little pain sponge barely even complained as they took 20 minutes to put them in, as it was harder for some reason.  

Shelley said afterwards that Amie's stoic tolerance of that procedure earned her a lifetime of watching however many shows she wanted.  I think I'm on board with that.  Yep.

Later on in the day, after Anya got out of school, the Adlers brought Anya up to the hospital.  

Much joy was had, much sister bonding.

This last picture is once again proof that they are my children.

...and also proof of how much improvement Amie is showing.

Friday also brought out the Mama Bear in Shelley.  The neurosurgeon team rounded on Friday and told Shel that she was going to be discharged later on that day, as Amie wasn't in emergent medical need for hospitalization.  She was extremely unhappy with that, as we had still not seen Physical Therapy nor Occupational Therapy (PT/OT from here on out) yet.  They said that all of that could be handled on outpatient basis at Milestones.

Shelley pulled out her Mama Bear claws and let them know that if her daughter has still not even sat up on her own, that putting her in a car seat a few minutes later was completely ridiculous, and that they needed to see PT/OT before she could be discharged.  Dr. Robertson was called in on the conversation and agreed.

So, we're going to be there through Tuesday or Wednesday, as there is no therapy on weekends.  Shelley wins!  or at least Shelley wins this, and has to stay at the hospital through then.  Ya see, I got some bug in me, and got banished from the hospital, so she's there by herself all day Friday and Saturday.  Good times, good times.

Now, for the final piece of magic:

From the start of her treatment, Amie hasn't really been overly fond of having pictures taken of her.  When you asked her to smile, she would often scrunch up her face.  We, of course being the creative people that we are, called that her "Scrunchy Face".  See below for evidence.

A good friend of mine went to a book talk/conference with Author John Green, of whom I've talked about endlessly on here, and whose book "The Fault in Our Stars" is about to become as massive movie on Anya's birthday (June 6th).  Seriously, all of you should read the book.  Now.  We'll wait.

Anyway, said friend (you rock Lindsay!) got to meet John Green, and asked him to do a scrunchy face for Amie.  He did it.  She put it out on Twitter and FB for me.

I know some famous guy whose words mean so much to me, and mean so much to my students doesn't mean a damned thing in the big picture....but it made my night, and day.

Hopefully y'all enjoy it as much as I do.  Now go read The Fault in Our Stars and cry your ever loving hearts out.