January 3, 2018
Pensive. Challenging trip up to Primary Children’s today for Susannah.
Susie’s tumor has grown on four months of Chemo.
Joseph joined me to discuss future treatment with our Oncologist.
Suggested switch to weekly Chemo (Vinblastine/Velban) and a Medicine from Huntsman, Avastin (Bevacizumab).
Susie checked for nerve damage and weakness.
Doctor, Care Cordinator, RN, Dad leaves.
Susie begins to talk.
Nurse comes back and informs us that Susie’s blood work will not support Chemo today.
(ANC too low. High Bilirubin).
Port unaccessed. Hooray! 🎉
Lunch at the Ronald McDonald House.
Haven’t seen this beautiful, cheerfully smile in awhile. 😊
January 5, 2018
Susannah and I listened to this and spoke of how this applies to us in our life today, just as much as to Nephi, in the Middles East many years ago, on our way up to Primary’s on Wednesday. I listened again last night and felt His comfort bring peace.
January 12, 2018
Thankful for friends Stephanie, Becky, and Kristen, and many more for helping with rides and entertainment for my two youngest. 💕
(Liam “helped” with taking down Christmas lights.)
Always feel torn when with Susannah up at her appointments. Grateful for the time, one on one, to be with her. At the same time, I’m worried, about the children who are apart from me at home and missing them. ❤️💔
This is the bittersweet part of this amazing journey of life.
So thankful for it.
Meet “Rapunzel!”
Susie confessed she has always wanted to be a blonde.
(Volunteers make and donate these darling hair pieces. No sooner than we had sat down, then a darling little lady, 3 years old(?), found a red haired Mermaid hat with sea flowers and sewn shell and put it promptly on her beautiful Round shiny head.)
Susannah was very brave today during port access. (It was tipped and so off the skin and painful today.)
She was in great spirits and playfully interacted with her Dr., Nurse Paul and Care Coordinator Gina.
She starts Avastin today (an expensive, new vasoconstrictor medication being tried for children from Huntsman Institute) but none of the new weekly Chemo (Vinblastine) because yet again, she is Immunosuppressed with ANC lvls too low.
Thai Massaman Curry for lunch with Dad! (He really delivers! 😊)
Willow, the Service Dog shares smiles and love.
Employees are encouraged to play. Patrons can play also.
One of our first visits, a resident was playing a Cello.
It is so soothing and magical to hear uplifting, beautiful music in a place that can bring to mind fear, tears, and pain.
What a cloud of peace this little walk past here was for me today. (Stalker video. Short clips for Joe.)
(Video of beautiful music accessible on Facebook.)
January 19, 2018
Susannah’s appointment at Primary Children’s today was to start a different Chemo drug (Vinblastine/Velban).
This is her first Chemo since Dec. 1.
Susie shows me how to take a “normal” Selfie.
This keeps her VERY entertained.
Darling Girl “Brookie” in Oncology Clinic gave HUGS before her appointment.
(I got to walk her back to her mom/room. Such an open, loving gal.)💕
She gravitated to Susie.
Susie brave when Chemo finally came.
“Push” dose today.
HOME!
Ready to cry.
Long day.
So blessed with wonderful friends.
Lisa brought warm soup, GF corn bread, salad, and honey butter.
January 20, 2018
And we are back…we haven’t toured the ER for a month or so. 🤪
Can’t figure out Susie’s elevated heart and respiratory rates?! Docs said they wouldn’t release us until she was below 110. She never got there. Consistently 120s though. (These shots were taken a couple of seconds apart.) Released!
Home at last!
🎉👑Happy Birthday to my “Graceful Lilly” Girl.🎍🎂
So glad we got to celebrate at home in our own beds. 🛌🎁
January 21, 2018
Susannah is feeling much better. Thank you for your prayers. 💕
January 26, 2018
I.V. today because of Holter. (Most kids wouldn’t like this. Susie does! No port access. Hooray.)
Cell phones, tweens, questions—“every week”! Repeat. Every week.
Thankfully it’s Friday. 😉
She’s wired! (All hooked up. Cancer meds and heart monitor this week.) Susie’s attitude rocks. ❤️
