thack smack: teeooo seeks

note: I have put in links to some of the names of things to help you, me, us, understand what is going on. Feel free to click on them.

UPDATE: Her pet scan came back clear, wahooooo!

Ask Ruby how old she is. She may say "teeoo" or she might say "seeks". And that's about all the numbers she knows, 2 and 6. She did turn 2 on March 1st though and we love birthdays around here. We did a few birthday things earlier in the week including dinner with friends and going to the dollar movie to see Big Hero 6. I was feeling less than awesome on her birthday so I was very grateful for Grandma Sandy. We went to their house for dinner and she had decorated with balloons, gifts, and cake.

thanks Aunt Liz for getting her to pose!

I love vegetables. Kale chips and buffalo roasted cauliflower

And for my early birthday present...a trip to see Jenn! I was slightly nervous to travel alone, but turns out that it can be totally awesome. Lots of reading and just time to be by myself.

Ferry Building

view from Lands End

The clubhouse by the pool at Jenn's apt complex. Those flowers!

Sunny but chilly at the beach

This is happy

While I was with Jenn in California, Mark took Ruby to a dr appt.

I love Kate! She's so cool.

We watched a movie, played games, went to tide pools, swam,

painted nails, and ate amazing cookies Jenn made

Jenn's stake women's conference. A.MAZING. I felt refreshed and inspired after going. It was motivating to be in a room with so many accomplished women.

tiny pot of clam chowder.

followed by THE BEST shrimp tacos I have EVER had at Calafia

As soon as I got home, Jane wanted to start a 'visit Kate and Max' fund

Sandy was washing her windows, Ruby wanted window kisses

And now back to Ruby. She seems to be the highlight of every post, although deservedly so since we spent lots of time on doctor visits, insurance, etc. While I was in California I got a call from Dr.Holly Perlman (Oncology). She said they're still not sure what the diagnosis of the mass is: Atypical Melanocytic Proliferation vs Melanoma. They have gotten some feedback from other hospitals across the country but are waiting on a couple more. And we do not know of any cases in a patient as young as Ruby, so there is nothing to compare it to.

The big red flag so far is obviously how fast the mass grew, and that the genetic testing on the mass shows that it is missing both copies of CDKN2A, a tumor suppressing protein. We are not sure yet if that is just in the mass, or if every cell in her body is missing that link (sorry family, if it is germline then we all may be doing some genetic testing in the future).

Since Holly is the Oncologist, she doesn't read slides or have expertise in genetics, so it takes a lot communication, translation, and asking questions to put all the information together. On the phone she said they want to do a PET scan, an MRI (just in case this is leaning toward melanoma) and meet with us on Tuesday March 10th to explain everything. I was comforted and grateful to be at Jenn's when I was. I needed a shoulder to cry on real quick and she was there. I looked up from wiping my eyes to see her next to me, Kate and Max playing in the ocean, and water shining on the waves. "Life is good" I thought to myself. Life IS good! After the phone call with Holly I was able to talk with Jenn's husband, Dave, who works as a geneticist and pediatrician at Stanford. He knows many of the doctors we're working with and was able to help me understand what's going on. Thank you Dave!

As I talked through things with Holly and her fellow yesterday, it helped to write it as we went.

It looks clear as mud, but I promise it all makes sense to me! She did email me later with all this in a nice and neat outline. The surprise was that the scan was already schedule for today, which we found out yesterday. At least that meant less waiting right?

So today Ruby and I spent the morning at Primary's. Thank you Mark and neighbors for helping with Siri and Jane!

Sadly the first IV didn't work so they had to prick her other foot. A PET Scan is longer than a CT, which I wasn't expecting, but it all went well. We hope to get results back tomorrow. I suppose when you have a child with medical needs, it is a rite of passage when you lose track of how many procedures/scans/surgeries your child has had. I felt like today is the day I lost track or quit counting.

healing well. In addition to the MRI scheduled for Monday morning, we have an appt with a dermatologist in the afternoon who is considering biopsying some of the melanin spots on her neck