Month: April 2020

Susannah’s brain tumor removal surgery early Monday morning was “challenging.” A lot longer, harder, and bigger than anticipated by the Chief Neurosurgeon. 6+ hours in OR. Longer in post-op, than recovery, than ICU—which can handle screaming.
Funniest thing yesterday afternoon…ICU Nurse Maddie had a relaxing waterfall playing with similar music on the screen when Susie was coming to from anesthesia-which has always been tough for her, and her momma.
“I hate this music.””I HATE this music!” Nurse is busy checking things: vitals, blood, swelling, 3 IV’s etc.
“I-HATE-THIS-MUSIC!!!” Susie screams.
We find the TV pad and turn to “Audio Radio Music” Station. Maroon 5 is playing. Susie falls fast asleep. He he.

Things learned.
“You should have seen the other guy!” Susie’s eye is swollen shut. She thinks she makes a good Quasimodo.
I did not think what my child would look like post-op after brain surgery—but I firmly believe PTSD goes for parents, as well as, children who suffer from cancer trauma. 😔

Here are some of the blessings:
*Everyone is quarantined at home now so my kids have a chance to heal.
*Eating again after TWO days tastes like heaven.”Food makes me happy!” (Yay for Primary Children’s Gluten Free Menu with Hamburgers, Chicken Nuggets, pizza, fresh fruit plate, steamed veggies, and chocolate pudding.)
*Toilet paper or no, using the facilities without a catheter is much better.
*Finding the right pain med (that you don’t throw up) and one that helps you sleep—Ahh. Toradol.
*Brain surgery is not for wimps. Susie has more than 30 stitches in her scalp.
*Sheltering in place at a hospital in a kids room leaves a parent with bad Cabin Fever and only 1,400 steps by 2 p.m. PCH hall walking.
*St. Patrick’s Day green slime with gold glitter, painting shamrocks, and NO PINCHing if you forgot to wear green—Social Distancing bonus.
*Sus shared this Corona Virus Cruise Meme and got only TWO calls to her room phone today—BOTH started out “Congratulations! You have won a free Princess Cruise!…” Angel humor. No joke! 🤪
*If one has had very little sleep for several days, and an eye mask, you too could sleep thru machines alarming, empty IVs, nurse checks, children crying, etc. You only thought you were a lite sleeper but you obviously have had more than 25 hours sleep in a week. 😂
*When your child’s surgery goes several hours longer than anticipated, your surgeon may begin drawing you pictures.
*Healing is step by step, day by day, in faith. God has a plan for us all. ❤️

Primary Children’s is a safe place to be, nurses reassured us.

Susie felt peaceful. She also felt another earthquake during her MRI, after and later in the early afternoon we both felt another one.

I joked today that Susie was my darling Chinese Daughter. I would call her Moon-Pie. Swelling continues from her brain to roll down the opposite eye and into her cheeks and jowls. She was heart shaped this morning and middle aged this evening.
🤪

We feel buoyed up by your prayers and faith.
Darling ward sisters have brought meals to our home to Joe and allowed my children to play while I’ve been gone. Blessings and more blessings.

I stepped outside for the first time in four days and it is wonderful at lifting ones’ spirits.

During this time of Social Distancing, let’s look up and smile at one another. Life is good because of the beautiful people in it.

Tonight on my Pokémon “walk the floors of Primary’s” evening escape—Susie craved gummy worms and I wanted a SoBe water. I put in money in a vending machine and pushed the button when a Diet Coke came out, then another, then another! Then two apple juices! 5 drinks in total. No SoBe water. Hmm. I have somehow won the vending lottery?!
Perhaps angels know I need sugar and caffeine to get through this?

Comforting words of scripture tonight of Jacob’s Allegory of the Olive trees and Sheri Dew’s thoughts on this time.

Had a small “miss you so much Dad cry this afternoon” and then picked myself up. Carry on!

Miss these darling kiddos and spouse of mine.
Maybe tomorrow we can be together again for Scriptures and Family Prayer? I hope so. 💕

Favorite Nurse Aid Sasha accompanied us to our car. Susie is still my swollen little Moon-pie. We are assured that in a week and a half, swelling We he gone.

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.
😘❤️

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!

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/

This is our Clearance IKEA Corn Plant.
It was a “rescue plant” that I hauled home several years ago (2013?).
It has been quite resilient to little people digging in the sandy soil, over watering, under watering, cold inside air conditioning or sweltering heat.
About two weeks ago, after “life events” got too busy to worry about houseplant care,
Bruised, battered, ignored, the corn plant went on to grow and give beauty to its surroundings and clean the air.
Susannah saw Liam run into the plant and went to help and ended up knocking the plant over and the dark wet soil went all over the floor. After righting the plant and scooping up dirt, my husband helped her clean up the mess.
Several days later, there was a sweet smell that I attributed to some old flowers not yet disposed of. During dinner, my husband pointed out that the corn plant had small white balls growing out of the top of it?
Corn plants can take decades to flower and most varieties only bloom at night.
The fragrant scent is sweet similar to jasmine and honeysuckle.
Trials need not make us bitter.
They can encourage us to bloom, sharing our sweet fragrance and experience with others around us, who perhaps hadn’t noticed us before.
Ether 12:18-19
And neither at any time hath any wrought miracles until after their faith; wherefore they first believed in the Son of God.
And there were many whose faith was so exceedingly strong, even before Christ came, who could not be kept from within the veil, but truly saw with their eyes the things which they had beheld with an eye of faith, and they were glad.

Lately, life events seem too great to handle lately. We are living in “Emergency Mode now the new “Normal” Mode with pediatric brain biopsy, illness of one parent, care of another parent, illness of second parent, new chemo, reactions to new chemo, etc. surgeries of family members, etc.
We have never lived for so long with so little sleep for such an extended period of time.

Tonight I feel Heavenly Father has surrounded me with blessings, reassurances, kind neighbors, and friends.

Do I have the eyes to see the beauty in each day around me? The breathtaking sunset, the rock painted by a child to remind us of love, the smile of a beloved father, and the beauty of once dormant plant now flowering.

September is “Go Gold” (ribbon) for Pediatric Cancer month. The UnitedStates spends less than 4% annually from its national cancer budget on childhood cancer research. 😞

Childhood cancer accounts for over 50% of all cancer diagnoses. Our children deserve more than 4%!

(It is as painful as it sounds to go through a cut underneath the eye and scoop a pencil eraser size amount of tissue from the lower Optic Nerve to look at.)

ThAnK yOu for your prayers. Truly.
It means so much to us. 💕

A sincere thank you for your prayers and well wishes on this journey.
We have a wonderful village. ❤️

I appreciate the advice of this South African Cancer Cutie’s Momma’s Article.
(We went over a year without a Cancer Team I could trust).
Personally, I find great peace in reading and learning about my daughter’s brain cancer—(thank you, Google Scholar) because to live in fear and at the ever changing whim and differing doctor’s opinions for my child was difficult for me.

Do what is best for your child, your family.

How do you do it when you are faced with a challenge you never saw coming and never in your wildest nightmares anticipated—pediatric cancer? You are a parent, even more powerfully, a mother. You cry a little (and maybe a lot in the shower) and you stand up and go to work for your child and your family.

You can do this! 💕

“Your child has…” – 7 Tips for parents confronted with a difficult diagnosis (from a mom who’s been there)