Thursday, May 31, 2012

News, news and more news

Ok, bare with me.  We got a lot of information the other day so I'll explain it the best I can.
It's a good plan!
Our doctor, Dr. Marina, ended up coming over to Gabriella's room after their meeting on Tuesday evening.  They call these meetings a "Tumor Board" where all the doctors collaborate on the care for specific oncology patients.  Instead of having us come back to the hospital for a meeting on Wednesday and since we were already there, Dr. Marina decided to come meet with us earlier.  Adam had already gone home so it was me and G.  We called Adam on his cell phone so he could be part of the conversation.  Not the formal meeting I had in my mind but I was really glad we didn't have to come back to the hospital after leaving yesterday morning.

We are chronologically at weak 9 but therapeutically a little over week 7 because of the two weeks of fever delay.  The tumor has shrunk significantly after only 2nd of the "overnight chemotherapies".  This includes the vincristine she gets weekly, dactinomycin and cyclophosphamide.  They were not able to see the left lymph node on the scans, which means it's responded well to the chemo.  They can still see the right lymph but it too has gotten smaller.  The PET scan, with the radioactive glucose still shows "uptake" of the right lymph but not on the left.  On the PET scan, the cancer is still active when there is "uptake" of glucose.  In regards to Gabriella's ovaries, the lymphs shrinking is great news!  They will be able to move her ovaries out of the waves of radiation. It seems like this is what they expected and after only 7 weeks of treatment, I'm positive about this news!!!

We were wondering and I had been asked a couple of times if the length of overall treatment would shorten from 42 weeks.  Dr. Marina said no, it is still the same.  The studies for rhabdo have shown much better outcomes from a longer course of treatment.  She said, "I want to cure her, not just treat her"!  It would have been nice to have a shorter course but I absolutely want to kill this cancer the first time around and never have it come back!!!  I am somewhat relieved that the treatment is still the same length.  We don't want to take any chances and will do whatever we need to.

The next big procedure (or surgery) will be 2 weeks after therapeutic week 10.  If everything goes as planned and we have no more delays, Gabriella will get her "overnight chemo" on June 13th or in 2 weeks.  Her counts will drop as expected.  Once they recover, the next big procedure will be scheduled.   Ok, the next big procedure will be a combination of three things.

1) A vaginal exam under anesthesia.  The MRI showed the primary tumor site being smaller but also showed what the doctors think is "fluid" in place of the tumor.  Rhabdo has grape like tumors which are fluid filled sacs (looking like a grape with no skin) that can evolve from the primary tumor.  I've seen one of them.  It's not pleasant.  The doctors want to examine what this "fluid" might be.  They suspect these grape like small tumors but we will see.
2) Clips for radiation to mark her cervix and the primary tumor site for radiation.  We will further discuss radiation with Dr. Donaldson but as far as we know, the radiation will not affect her cervix, uterus and possibly her ovaries.
3) Moving the ovaries out of the path of radiation.  The doctors are pretty positive that they can move the left ovary out of the way.  As for the right, they will move it in hopes that it will also be out of the way.  Time will tell.
We are both relieved that these will all be done in one surgery.  Whatever we can do to help her future hormonal function, fertility and normal development while killing the cancer is what we hoped for.

As for Radiation, this will start at therapeutic week 12 or a few days after her surgery.  This means we will be at Stanford every day for 5 1/2 weeks.  We are still trying to figure out the logistics on where to stay, if we need to stay, etc, etc.  They will more than likely put her to sleep every day because it's so important for her not to move.  They will use Propofol to put her under so her port will be accessed Monday thru Friday.  She's just at the cusp of being able to stay still because of her age.  Hopefully we can work on this so she doesn't have to go under anesthesia every day.

The last thing Dr. Marina said was, "Don't forget to have fun in between"!   We are doing our best to have fun but want to stay on our plan and out of the hospital.  We are guarded and nervous.  Adam and I need a break from the hospital.  We've spent about 12 nights over the last month there.  I want G to be home for a while.  It's going to be a fine balance between play and rest.   So if we ask if you have been sick, please don't be offended.  I know, probably a dumb thing to mention.  Just know we would love to see everyone but we are so guarded.

It's amazing how wonderful home feels and how nice it is for all four of us to be here especially once it's taken away from you.

Whew, ok...going to rest and relax with the family now and catch up on some much needed rest!!

GO TEAM G!!!!!!


  1. Fantastic news!!! You are winning the war!!!
    GO TEAM G!!!!!

  2. Great news and great plan! And you are right, you just want to fight this fight once!! Be as aggressive as you need to be. And enjoy home and your sweet family being together!! XO

  3. Good plan! You are doing a great job! Stay in the moment and remember: If it's not happening right now, it's not happening. The tumor board knows their stuff and they don't mess around. What do you think of this:

  4. This makes me happy. I feel like this is positive news and that you are slowly but surely getting to be where you need to be. I pray that you get to stay home for a while, I wish I could stay at the hospital w her one night. But i know there is nothing more comforting than mom and dad. I love you all so much