The Campbell Post

Each day is a gift.

Each life is precious in His sight. 💕

For the month of September, in honor of Childhood Cancer Awareness, I’ll share one story of childhood cancer a day.

Hope you will join me and educate yourself to our epidemic.

(I had no idea childhood cancer was so huge a problem in the US. We don’t talk about it.
Let’s talk about it.)

My Cancer Cutie is Susannah.
Nine days after her tenth birthday, she awoke from a Sunday afternoon nap with a migraine type headache, pain over the right eye, vomiting and proptosis (eye bulging).

At Primary Children’s, after some tests and an MRI, we learned she had a large Optic Pathway Glioma (brain tumor located on her Optic Nerve).

She has failed 3 Chemos, which affected her heart, lungs, and nerves.

She developed anaphylaxis, allergic reactions, severe vomiting, lost 30 lbs, much of her hair, developed Methemoglobenemia (the cells in her body hold on to the oxygen and don’t release it to the body—dry drowning, as a result of a daily antibiotic to support her CNS port) and continues her fight.

She is on an IV Therapy medicine called Avastin from Huntsman Cancer Inst. ($12K a dose, every two weeks), after an expected rejection and accepted appeal from insurance because this has “NOT been FDA approved for children,” we are so grateful that Insurance helps cover her treatment costs.
Avastin has shrunk the swelling on her Optic Nerve (restoring some vision).
Her tumor more than doubled in size on Chemo and remains the same size.

She is in Sixth Grade at a school for Gifted and Talented and wants to “look beautiful and be treated normally” like other children her age.
She is artistic, creative, genius with technology, and longs to be called to babysit to earn some extra money.

Did you know that the new future of medicine is all about our genetic makeup (specific cancer treatments respond to specific genetic markers)?

Or that you can have (as some Geneticists suspect in Susannah’s case) something called Mosiac Syndrome? That is where most of your body tests negative to some genetic code, Neurofibramatosis 1 (NF 1) or NF 2, for instance, but depending on the way that you sat in-utero, your head alone may carry a different specific genetic sequence?

What an amazing world we live in!

When Susannah was diagnosed with a suspected OPG (Optic Pathway Glioma, brain tumor) one of the ways I fought down vulnerability and fear was to read more about it.

If you have a “smart” device, you can type into the Search Bar the words Google Scholar.
Follow those words with things you want to research.
If you want to include more natural remedies or articles with more natural based herbs or treatments, type in the word integrative.

This will bring up all of the Scholarly Articles on a certain subject (and skip the advertisements and “blog opinions and treatments.”

Have a wonderful day!

Met mom at the Ronald McDonald House whose son had brain surgery (Chiari) and developed bacterial meningitis post-op.
“Today is a good day!
He is having a good day (and so, so am I).
His best day so far.”
(Mom and son were Lifeflighted here to PCH 6 weeks ago from Idaho Falls.)

Connections made. Life’s journey shared.

“I’ll be thinking of your daughter.”
“I’ll be praying for your son.”

So many people walking challenging roads.

Grateful today I can share a smile and encouraging word.

Carry on Warrior Moms (and Dads) and children! ♥️
The path is rocky but thankfully our burdens can be shared.

It is only now, that I am reflecting on this profound lesson, timing, truth, and teaching through the Holy Spirit.

Life has been SO fast this past week with the ending of school for the children, a family business trip last weekend, preparing for and hosting a Family Memorial Day Party, and…and… that I have not had a chance to “be in the moment.”

In the lesson at Church, the scripture stories shared were from 1 John 9:1-7, see
https://www.lds.org/bible-v…/…/jesus-heals-a-man-born-blind…

Also, from The Book of Mormon, 3 Nephi 11:1-17 where the Resurrected Savior, Jesus Christ, let the multitude gather around the temple come and SEE the wounds in his hands and feet, that they might know Him.

Such a beautiful, sweet age to teach and learn together.

Tuesday, I was following up on a dental tumor Jonathan has, with his Pediatric Dentist (getting him scans) to evaluate what to do.

Wednesday, Susie sat with my mother on a swing outside her cabin home in Springville.
After hearing about Jonathan’s tooth tumor, and remembering Susie’s brain tumor behind her right eye, my mother exclaimed:
“I hate this! (Cancerous tumors). Why do these things have to happen?!” She asked aloud.

I agreed. In faith I too echo Jesus’ “that the power of God might be made manifest. “

As much as I hate cancer, and more particularly watching these angelic little ones fight it (or the effects of Chemo poison and other medicines), our journey has had sacred moments—including time to talk one-on-one, as we travel up for treatments every week or two weeks.

Never before have I felt such darkness descend when reactions occur, prognosis’ seem bleak, and medical anomalies happen—forcing me to rely on medical personnel for my daughter’s well being and life, and on the goodness of friends and family to care for my family.

Oh the greatness of the Spirit and of so many individuals who have reached out to us and: said, done, made, baked, brought, and delivered hugs, messages of hope, faith, inspiration, meals, babysitting, patience, and kindness!

I’m so behind in writing ThAnK yOuS.

My tired, rambling heart is so full tonight.
God DOES indeed hear your prayers and care about you, even the little things in your life. ❤️

https://www.churchofjesuschrist.org/bible-videos/videos/jesus-heals-a-man-born-blind?lang=eng&fbclid=IwAR172drsOpVrt9q5E19UPxuCeW30EtoaLozTxhBEkP1Zs7UptHpFr5U8Uao

Proffered cups of herb tea.

Worries. Prayers. Comfort.

Dark Chocolate fortune. “Home is where Mom is.(!)” True. Pressing on.

More comforting.
Reading on “Google Scholar”. Avastin: 55 “common” side effects.
“Excessive flow of tears”(?!) Really?
Where was the web-editor? Is this a webpage version similar to Charles Dickens—getting paid per word?
Wouldn’t “crying” suffice?
Cancer cutie laughs, before succumbing to more “excessive flow of tears.”

We talked about how her daughter was healing. Her daughter smiled up at us. She wore a pink, fluffy dress and a halo of gold and white butterflies in her hair and was very busy eating and later coloring a picture for Father’s Day.

After hearing me tell her daughter about my daughters, one who also had a TBI last year, and one with Brain Cancer, she walked around the counter, and spoke softly to me.

“How’s your daughter doing?”
“How are you doing?”
“Are you taking care of yourself?”
Her knowing eyes seemed to take in all of me.
I whisper back…I am learning and trying.
That can sometimes be the hardest part!
Self care.

It is easier to forget oneself wholly in serving ones spouse, family, Church, community, “project,” that it is easy to forget to nourish ourselves physically, spiritually, emotionally.

To do so feels almost a betrayal—
This is something I am learning.
Just like flying on an airplane, and listening to instructions on the use of emergency oxygen masks: first put the mask over your own face, then proceed to help others.
To serve others, one must take the time out to physically care for oneself.

Winston, a darling Therapy Dog, patiently loves the children and gives them sloppy hand kisses in exchange for dog treats.

Patient Allergic reaction in Clinic:
FAST
Little pink-iced hair (prior to Chemo, now looking like a small tufted bird), Ryver, begins to scream.
(Tense voiced nurses calling out stats.)
“Heart rate 190, call Rescue Team”,
“IV Benadryl,” crying, vomiting,
“HR 205,” more vomiting,
“HR 215, 220,” oxygen started,
“respiration 44,”
Rescue Team arrives.
Curtain pulled more around Susie.
Crying slows, stops. Ryver sedated.
Silence.
Machines beeping,
Mother wails. Sobbing.
Praying.
Twenty people in hallway sized Clinic just beyond the blue fabric curtain pulled around Susie’s chair and IV machine.
Quiet.
Shuffling and whispers as adults exit.
No happy children mumblings.
Beeping sounds continue.

Susie has earbuds in, blissfully unaware.
No Reality ER Drama for her.
Grateful.
Praying again. Thankful Ryver and Mother okay.
Mother’s voice heard calling neighbor friend.
“Trey. Can I talk to your mom?” Listens to long explanation of toys and activities.
“Trey, I need to talk to your mom.
Ryver has a reaction and needs to stay overnight…” Mom now stuck at PCH while her five year old stays at a neighbors.

PTSD—I feel shaky and restless.
How can I hate Chemo so much when it is what we have to curse and “cure” these children?!

Susie and I wear our Temple Glass necklaces to remind us of the beautiful peace and promises made there.

Rush hour avoided once again by taking the pass thru Heber.

Home again!❤️

Thank you for your continued support and prayers.💕

Avastin started at 5:00 p.m.

Thankful for prayers answered. 🙏🏼