Monday, July 16, 2012

Radiologist Meeting- July 16th

Thoughts on Sunday Eve:

As the day gets closer, yet again, where we have to endure Gabriella's little body being flooded with medication to make her sleep, meds for fighting infection, meds for pain, being poked and prodded with needles for stitches, tissue being taken for biopsies, and invasive markers to be clipped to her little body, I find myself thinking about the first few months of both pregnancies.  When people would ask me, do you want a boy or a if I even had the ability to choose, I would always tell them, "I just want a healthy baby".  (I did secretly want girls but don't tell Adam ;-))...a healthy baby.  On the day of March 16th, 2012 I was just trying to breathe as we walked into the Bass Center for Childhood Cancer, that one want...the only want for my little girl was taken away from me.  Not only was it taken, it was violently ripped from right underneath me.

Meeting with Dr. Donaldson, our radiologist and her team.

We woke up today to get ready for our meeting with the Radiologist, Dr. Donaldson.  It was difficult to get going this morning just because it was Monday and we knew that we would have a lot of information thrown at us today, and the days to follow.  After the weekends, it's back to the grindstone.  I've never been so aware of Mondays till this whole ordeal started.  Due to our nursing and firefighter schedule, weekends were always the days Adam was off.  We always tried to plan our trips during the week so we wouldn't have to run into the weekend crowds.  That started to change as Gabriella started preschool and now, we are even more aware when Mondays come around.  Today the weather was a bit dreary, kind of like my mood.  But as we got started and got the girls ready, we made our way up to Stanford.

As soon as we checked in, they were ready to bring us back.  Gabriella got on the scale and weighed 36lbs!!  She has been steadily climbing from around 33-34lbs in May back to her original start weight at 36.6lbs.  It is like heaven to see her eating so much and having it pay off.  Adam and I give each other a reassuring glance when we see her putting away chicken nuggets with ketchup, broccoli, and mac n cheese.

We meet with a very nice young medical student.  He was just there to get the basics.  As we get used to working with the different levels of medical personal, we realize what they are good at and give them "jobs".  I asked to see the report and the actual images of the MRI scan from May 18th.  The initial scan of this enormous tumor in Gabriella's pelvis has been a burning image in my head.  I wanted to replace it with the newest image.  The tumor and the right lymph has shrunk as they explained but the right lymph is not responding as quickly as the primary tumor site.  At this point, the resident came in to introduce himself and confirm more information about Gabriella.  With my questions fresh in my mind and more coming as we got started, I was eager to ask away and had my notepad ready.  But, I had to wait a little longer for Dr. Donaldson, who has been an active member of the rhabdomyosarcoma treatment plan since 1972.  When she came in the room, she was like a beam of light to me.  I felt very comfortable with her and believe that she will do what it takes to cure G.  She was also so attentive to Gabriella, Bridget and to us, apologized for the flood incident and acknowledged that we must feel "jerked around".  It was reassuring to know our team of doctors understands how we are feeling and that they are feeling the same way.  Some things are just out of our control.

Our meeting with Bridget and Gabriella, me and Adam, and four doctors crammed into a little examination room was in progress.  Gabriella was busy playing Mickey Mouse on my iPad while Bridget played the Easy Bake game on my iPhone.  For over an hour and a half, they were completely cooperative.  They were amazing.  It's like they both new this was something really important and mommy and daddy had to pay really close attention.  We were hanging on every word Dr. Donaldson was saying, trying to remember all the questions we had on our mind, taking notes and reading back what we were hearing.  It was like being in school again but I would give my own life for the reward at the end.

I again asked about the lymph being so big in relation to the primary tumor site.  Doesn't the cancer spread from the primary tumor site to the lymphs at a later stage?  Is this common in rhabdo for the lymph to become as large as it was?   They aren't quite sure why the right lymph became so large while the primary site was only slightly larger, why its not responding as quickly, and were perplexed about it as well.  What they did say was that ultimately the images do not predict the final outcomes.  She said,
"Failure is not an option.  We won't even discuss it."  What she did say that really stood out to me was the likelihood of curing my little girl is 90%....90%.

As I try to sit here and shuffle through the notes I took today, I'm trying to fend of the feeling of being totally overwhelmed.  I'm already emotionally and physically exhausted.  There was so much information today.  I feel confident but at the same time very scared.  Scared for my little girl who has to go through all of this.  She has hardly complained about anything through this whole experience and she is still as sweet as ever.

So here's the plan:
We will have the weekley vincristine this Wednesday, the 18th.
The surgery is confirmed for this Friday, July 20th.
The following week Gabriella will probably have the three drug overnight chemo Thursday or Friday, the 26th or 27th.
We will probably have another meeting with Dr. Marina and Dr. Aftandilian the last week of July.
We will have another meeting with Dr. Donaldson for Treatment Planning probably the first or second week of August, where they do a CT, make a mold of her little body for radiation and do a simulated radiation session.  (We don't have to wait for pathology reports to start radiation so that is good.)
Radiation will happen soon after that.

I had no idea there was so much to do before we started.  I'm getting so anxious to start radiation.  So anxious... especially learning that some rhabdo patients have had their tumors start growing again if the radiation wasn't done before 24 weeks.   Dr. Donaldson and Dr. Marina seem to be pretty anxious to get radiation started as well.

Again, we wanted to say thank you for all of your support.  We've been at this for 4 months now and it's exhausting.  We are so thankful for all of the big and the little things you have all been doing for us; the dinners, the cards, everything.  Please know that even the small gestures are greatly appreciated and they never go unnoticed!  Adam and I are both so grateful for your support and your dedication to getting Gabriella healthy again!

The phrase Dori from Nemo kept repeating keeps coming to my head through out this journey..."Just keep swimming, just keep swimming".

Go Team G!!

(I'm trying to read this over again to see if I misspelt any words but I'm so tired, I can't even see it anymore!)


  1. I don't know you guys, but I came to the blood drive and completely fell for you and your husband because of your incredibly energy, positivism and perseverance. I just spent the last year with my friend going through breast cancer (she's not cancer-free - what a wonderful set of words) and I am compelled to follow your story.

    I blog a lot and I just wanted to say that this is a tremendously good blog. As I read I am there with you - whomever is writing - and I feel so connected to you. I believe sharing is a powerful way to attract goodness and I truly believe this will help your daughter and both of you.

    I can't believe the surgery got bumped, I love the Nemo quote (we used it too!) and I share your vision of a totally positive outcome with two spazzy little girls running around a year from now driving you crazy with all the things little girls do!

    I can see it.

    Stay strong.

    1. Thank you Jennifer, for your positivity and for your support through our journey! It's amazing what stands out in my mind. This comment will be one that I'll remember.