December 14, 2019
I’m so proud of this gal!
As a new Seventh Grader, I would struggle with all she has been through this past Fall.
(Brain tumor biopsy through the eye, new Chemo, toxic effects stage 2 of 4, Dermatologist “congratulated her” on being so lucky to have already had 3 of the 6 possible skin reactions to Mekinist!?)
With all that is going on in our lives, I realized I don’t really post family updates much anymore.
See this. This is $3500/month Chemo medicine for Susie.
Note how it is triple bagged, in addition to being in TWO child proof sealed bottles?
Chemo is toxic. We pour three pills into a Dixie cup for her to swallow daily and then the cup is thrown away and water cup immediately washed.
(This medicine, Mekinist, is a bargain to her I. V. Medicine from Huntsman, Avastin, that was $12,500.00 a dose.)
When being instructed on the side effects of this Chemo (her fifth different drug), we scanned thru scary things like permanent cardiac damage, blood clots in eyes causing irreversible blindness and rarely seen skin cancer.
Common side effects include: Some rash, nausea, diarrhea, tiredness, acne, anemia, abnormal heart beat/change in heart function, Squamous Cell carcinoma.
Tests would need to be ordered regularly: Echo/EKG done every month to three months, repeated for three years.
MRI\vision screening every three months.
Susie scanning the list of side effects chose the one perhaps she understood and shouted “acne!? No way. I don’t want to go on this!”
Of all the side effects I saw, acne didn’t scare me. I just had no idea how badly the skin like “acne rash” could get!
To combat the skin condition, Susie has been prescribed no less than nine other oral medicines, creams, gels, and steroids so far.
When is enough enough?!
Cancer. Ugh.
We all have our own trials and journey to traverse here on earth, but from
one mother to another, or one human to another, if someone has a rash or severe acne, or seems down or depressed—lend a smile and try and reserve judgement.
Sometimes, it isn’t what you think.
😘❤️
December 15, 2019
Heartache and Blessings.
This Friday at Primary’s Oncology Clinic, I watched this patient, gentle father cradle his little girl and comfort her, hour upon hour, of her Chemo. 💔💛 True fatherly strength and devotion. “No greater love…”
I drove home tired but grateful for rain instead of snow, and a warm delicious meal prepared by my sweet neighbor, Karen—who also picked up our Exchange student, Irene, and had my youngest busy body to play.
(Karen has arranged countless babysitters and meals for us on Susie’s Outpatient Clinic Days. She baked Dijion Chicken, roasted potatoes and Brussels sprouts and brought this truly pink “Ruby” Chocolate (with a poem!) Yum!
Thanks also to my amazing husband, Joe, who stayed home and answered work calls at home as Mr. Mom, helping sick E, dropping off/getting carpools, and groceries while I was gone.
Little L got to swim/play with cousin River.
Thanks, Kelene!
What amazing family and friends I have.
ThAnK ❤️ yOu!
December 27, 2019
Friends,
Want to change the world or someone else’s world?
Donate blood!
There is a blood/platelet shortage in Utah and little ones are being told they can’t get transfusions because there is not enough blood products.
A mother whose young daughter is fighting effects of pediatric cancer wrote tonight:
“My daughter is inpatient (Primary Children’s Hospital) and has VOD, a liver disease caused by her chemos…
Anyway, she’s been on a continuous platelet drip because her liver is not functioning and her bone marrow has not recovered from the chemo. However, her blood type is AB- and there is a shortage of platelets for AB- recipients…they are removing her from the constant drip to see how she reacts because there is such a shortage.”
😳😕
Susie required several blood transfusions with her first two rounds of Chemo. (See pictures below).
If you can donate blood, please do.
http://www.utahblood.org/
