thack smack: better than a kick in the pants

Wednesday, March 20, 2013

better than a kick in the pants

Deep breath.
This isn't going to last forever.

I've been humbled. I'm thankful Heavenly Father helped me have a better attitude today. He could have given me a kick in the pants, a flat tire, the flu, whatever. Instead, I went to the usual NICU parent hour that is held every Wednesday at Primarys. Any parents of NICU babies come. We have lunch and there is a speaker or topic. At the end there is a chance for everyone to introduce themselves and say something about their baby. As I heard other parents stories I was humbled and thankful for my situation.

how I felt yesterday

As I went back to Ruby I held her skin to skin and just lu hu huvvvved that little lady! I listed to the mom next to me talk to her baby, who was born Oct 31, 2012. She was telling the nurse, in a very upbeat happy voice, that she thinks her boy will be able to come home in 4-8 weeks. And she was psyched about it.
Wow.
I'm also thankful for a husband who is....I don't even know how to describe him. His actions speak louder than words. And as I have ups and downs, he listens.

today

walk with the girls this morning

Roo bear in her new crib

Thank you peoples for the prayers, food, uplifting emails, blog/FB comments, and packages of sunshine.

p.s. this is our fav song the past few days

2 comments:

Dan and Liz said...: I lu hu huuuv that you update your blog so much. I also love that song, like a lot. I direct people to your blog all the time!
Love that roo bear and you guys, too!; March 20, 2013 at 7:21 PM
Shelly said...: Reading your blog has turned into a nightly ritual. Usually happens at about midnight. Tears are rolling down my race from your last post. You are right it isn't fair for you to be there. Ruby is a fighter. Good news will come your way soon. It has too!; March 21, 2013 at 12:51 AM

Post a Comment

#TeamThack

please ask permission to use any photos

thanks!

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.

Thank you for your love! If you'd like to donate to #RallyRuby you can go to GoFundMe.com/RallyRuby

You can mail funds, tax deductible, to:

TKJ Charities Inc.

2413 Royal Lane

Sandy, Utah

84093

They will match funds 20% and the funds are used solely for her medical bills and expenses related to Ruby.