thack smack

Sunday, April 12, 2009

We are loving the warmer weather lately. We've been hanging outside alot. Siri just loves to sit on the grass and scratch at it. Mark went snowboarding yesterday while I went to an Easter egg hunt with my mom's side of the family. We've gone to see the biiiihg fishhhhuhs at the Aquarium, had dinner with friends, and made more yummy food (like Sandy's famous peanut butter eggs, Mark's homemade lasagna, and my mom's 7up bundt cake).

Next week I run the SLC 1/2 marathon. Afterward I'm getting a massage and facial! Mark gave me a gift cert for Christmas that I'm finally using. It's the perfect motivation to finish a race.

Happy Easter!

Girl cousins

Automatically makes me smile

We just got Siri a bike trailer/jogger and helmet to go with her cool sunglasses

1 comment:

The Jacksons said...: that is going to be way fun to take siri on bike rides! should i tell you about the time i drove by a dad bike riding with his baby behind him and he hit the curb and the trailer flipped over? no, that might scare you. just good thing you got her a helmet. oh dang. you already worry too much as it is. that is going to be way fun to take siri on bike rides!; April 17, 2009 at 5:51 PM

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Our 3rd awesome daughter was born March 2013 with a large vascular mass on her neck, diagnosed as an atypical nodular melanocytic proliferation. Surgery January 2015. There was worry of melanoma in the mass after being removed, but all her scans were clear until...March 2016 Ruby was diagnosed with metastatic melanoma, two weeks afer her third birthday. Tens of spindle cell tumors in her lungs. We tried an immunotherapy drug April/May 2016 that may have been the cause of stabilizing the tumors. Back on Nivolumab January-November 2017. A visit to St.Jude Childrens Research Hospital and further testing there discovered a gene mutation in the lung biopsy and a couple drugs that target it. She has been on a clinical trial (phase 1 drug) of Entrectinib since December 2017. She had surgery Feb 2019 to remove some suspicious (but benign) looking tumors and got her port out in May. She continues to take the drug every day and hospital visits every 4 weeks. Her most recent scans show there is no evidence of disease! She will continue on the trial drug for maybe another year or two.... in the meantime we are trusting in God and enjoying our time together.

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