The hospital was awesome. Amazing staff. Love those southern accents and charm. Thankful the trip was paid for by St.Jude. It's incredible how many kids and families they are able to help. The food was good. I definitely had a "we're in this together and God is present" type of feeling. The first day was really hard. Up super early, traveling, lots of paperwork and waiting, blood work, a little confusion with our hotel stay. By the last day I was bursting with gratitude, chatting as long as we could with those we'd met until it was time to go.
The purpose of this trip, I was thinking, we'd get an idea of what to do going forward, maybe start treating her with Ipilumimab also. Instead, at the conclusion of our visit, Ruby and I sat at a conference table with 11 people from St.Jude (melanoma specialist, dermatologist, radiologist, surgeon, pathologist, nurse, etc) and the pathologist said she didn't feel she could confirm that lung tissue (from Ruby's biopsy last year) was melanoma. Uhhhhh, ok. So what is it?
Ruby was diagnosed with cancer March 2016. It seemed definite-melanoma. I never thought to get another opinion on the diagnosis. Especially with her congenital neck tumor. But Ruby's case really is unique as there are multiple mutations and not the red flag ones that are typical of melanoma.
They are going to do more testing on the tumor, and on Ruby's own blood. Should be 2-6 weeks til we find out more.
I'm feeling a little anxious. Its hard to wait and not know. I also see the bliss in innocence. Whatever they want to call it-its still cancer, and its still threatening Ruby's life. There isn't anything I can do right now. Except go to bed. I can do that, and I think that will help me feel better :)
She has a round of immunotherapy tomorrow and I'm really looking forward to talking to her oncologist, Dr Whipple. During the summer Siri and Jane would take turns going with Ruby to her infusions, but I haven't had them come since they'd have to miss school. Ruby missed her sisters so much while we were away. She is happier, has more fun, when they're together so Siri will take a turn and come with us. Absolutely worth missing school.
I am trying to handle what I have right now, but all you friends, neighbors and family who are going through your own challenges, please know I'm thinking of you and love you!
infusion day on Halloween
sisters! Love that we got to be with Jenn
Happy birthday mama!
Ruby and I got to get fancy pedicures from Sego Lily day spa.
Loved it!!
Proud to be this girls mom!
She's talented and I loved hearing her practice pay off.
Thank you Uncle Bill for being willing to take us to the airport at 4:30am!
Unexpected port accesses are the worst.
And Ruby is getting older, she remembers what's coming.
The mental part of port access is getting harder.
Love love loved the Memphis Zoo! Hardly anyone there. Perfect cool fall weather. Pandas. And got to be with another melanoma St.Jude family that had 2 little girls that Ruby became friends with.
welcome home gift from Jane to Ruby :)
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