Tweak in plans. Right now it feels like a huge blessing. I felt a blanket of comfort when I got an email yesterday from my brother in law, Dave, who sent me an email string basically saying that there is an immune therapy specialist who just started at Stanford (Lucile Packard Childrens Hospital) in Palo Alto, California.
My sister Jenn, and her husband Dave and their 2 kids just moved there a little over a year ago for his job. He does genetics/pediatrics. Its not too far from UCSF (San Francisco), but to know that my sisters family is only 20 minutes away...blanket of comfort. Previously Stanford wasn't on the list of places to go, but since this Dr.MacKall is new there, it hadn't been added to the list for places that are offering this trial of drugs (Ipilumumab, Nivolumab, Pembrolizumab) that may work for her...it is very much in the early phases.
The type of therapy she'd do isn't chemo or radiation, but is called Immunnotherapy. I don't understand it completely, but here is a video if you want to get the gist.
With the weekend, its been a lot of emailing back and forth with Dr.Holly Perlman and trying to figure out what is best, who to talk to...so much information, its overwhelming. There isn't a timeline yet as all of Ruby's info still needs to be submitted and approved. Yes as of now we're planning on going to Stanford, but nothing is official or accepted. Like I said, moment to moment.
Mark and I just talked over the still possibility of going to St.Jude in Tennessee because they will help with travel and housing. We both agree its not worth splitting up our family, that far, for who knows how long. We'd rather figure it out financially to go to California. That way, if we need or want, the whole family could go, or there could be going back and forth more easily.
I also want provide as much honest information as I can to you family and friends. Although I haven't heard her doctor say yes, this is 110% stage 4 melanoma cancer, we are assuming it is and planning treatment in line with that.
We don't know how fast it could/will spread. Remember when she was born? We thought the mass on her neck would grow. Nope, it shrunk. Then ballooned in a short amount of time. No one knows what prognosis to give her, because its unprecedented. I see that as a good thing. There is hope. There are a whole list of possible side effects of these trial meds...rash, pain, stomach issues, and more.
There are things we can try to do on our own like regulating her nutrition. I also feel like if we don't try this therapy for her, I'll wonder what if...
If you do happen to have Ruby (or Siri or Jane) with you or want to bring a food something, can I ask that you help me in regulating her nutrition? It can only help. I really believe in the power of our food choices. I am mainly referring to junk food, high sugar, empty calorie, processed items. I believe in a good treat that is worth it and we love all that has been given. We appreciate your thoughtfulness and nothing goes to waste. I am totally that person who shows love through food and it is hard for me to limit junk! But please, still come or stop by no matter what.
And now for some fun. Went to the gym and the annual Fetzer Easter Egg Hunt yesterday. Took Jane and Siri skiing with Liz, Sam, Grandma Carol, Matt, Benj, Emily and my friend Emily Moench...we met in college at the U and skiing at Snowbird. It was the best! Jane was very worried earlier in the day about going on the lift for her first time, but was the opposite once we got there. She loved it! Proud mom moment :) We came home and had dinner, watched some of Nacho, and Emily read the girls books.
#footiefortheboys Go to @jerryoftheday on Instagram
if you don't know what I'm talking about
my friend brought a box of fresh produce from her sisters farm in Cali.
she said "I think this is like the Thackeray version of a treat".
Maybe not my kids, but for me, yes, a treat indeed!
Ruby LOVES nursery!
Just now she brought a primary CD of songs to me and asked to listen to it
Coloring books in their Easter baskets
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