Author: admin

March 9, 2018

The Luck of the Irish has reached Primary Children’s and Susie did just fine (Avastin).

We made it home before the nausea started.
Home-sweet-home. 🙂

March 10, 2018

Sweet family and friends ran in honor of Susie today at the Rex Lee Run.

March 22, 2018

My friend, Keri, stopped by Monday with a gift in tow.
A darling Mermaid Tail Blanket, donated by www.whimsytails.com for Susie, along with hand crafted cards from her darling daughters And a testimony from her!
So thankful for beautiful friends who remind us of God’s love. 💕

March 23, 2018

Rainy highways. Thankful for Hannah’s friends, Sam and Emily, for filling in with younger children today. Liam loved playing with cousin Indy—Thanks, Amy.
Heart torn: thankful, grateful, homesick, missing family and time with them, too. Saudade. 💕

February 2, 2018

Friday. Another Pediatric Cancer Clinic day.

Exercises with Dr. Whipple—checking weakness/side effects of Chemo.

February 3, 2018

Thank you for your prayers for Susannah. 🙂

February 4, 2018

Oxygen desaturation and fever began as usual this morning (post-Chemo).

Good thing Uncle Matt (Pediatrician) makes house calls. Gray paler. Low oxygen. Fast heart rate. Body aches and pains. Nausea.
“She needs an ambulance to get to Primary Children’s ER or (portable) oxygen..”
Double checked oxygen at his office.
Admitted to Utah Valley to observe overnight.
Rocky day.

Chest X-rays. Hard work. Nurses Hailey and Madi.

Port access ROUGH.
Third times a charm.
Brave princess.
Every times she falls asleep her oxygen desaturates. No one knows what is going on.
Atypical Chemo reactions. LONG, painful day.
Canceled Make-A-Wish declaration.
Just want a peaceful weekend. No such luck.

Changing of the guard. Heart beat too fast for sleeping (over 120–tachycardia). Oxygen too low for already being on oxygen (half, turned up from a quarter liter.)

Went to pick up Susie and Joe.
Rechecked oxygen saturation.
Anything below 88, during the day, needs oxygen. Color a bit better today. No fever currently.
(No known cause yet for increased heart beats, fever of unknown origin, and low oxygen saturation except that this has been her pattern after her second dose of her third Chemo.☹️) Still no answers.

During this Winter season, I appreciate the Hospital staff for wearing gowns, masks, and gloves.
Thanks for keeping your sick little ones home to prevent the spread of illnesses! 👍🏼😊

Home!
We got more Super-girl accessories.
Oxygen makes for smarter breathing.
(Heart rate looks great!)

February 7, 2018

I hate feeling helpless and vulnerable.
Raw motherhood emotions tonight.
Susannah has a bad headache and eye-ache early this evening.
Desaturation. Oxygen. Hungry. Grumpy.
Ate three carrots and a sip of berry smoothie.
Cancer. Bah!

February 9, 2018

5:00 a.m. for 7:30 port access.
Susie’s yawn says it all.
Oxygen accessory.
Low oxygen. Fast heart.

Weigh-in and a tearful anticipation of a smooth port access. (Thank you, Cami with great hair. Only one poke).

Life’s better when gaming with Dad. Terraria!

Checking out yet more side effects. Palms for elevated bilirubin. Signs of oxygen.
Thankful Doctor Whipple picked up side effect of antibiotic, Dapsone.
Methhemoglobinemia—her blood holds onto the oxygen and doesn’t want to release it to her body. Oxygen levels are difficult to raise even while ON oxygen.
“Dusky” episodes—of blue green skin.
“The gray lady.”

Infusion clinic.

Going HOME! ❤️

February 23, 2018

Tricky Snow Day going to Primary Children’s.
Dropped Liam off in Springville and decided to take Frontrunner up.
Met Iris and Vi’cente from Peru who traveled up with us.

February 24, 2018

Port access tricky. Two “pokes.”
(Guess I should photograph needle-port needle looks like a venomous snake fang but almost an inch and a half long. Nurse brings it up to Susie’s chest lvl, right under her eyes, about seven inches. Scary!)

So glad we could meet Dad in Murray and travel up with him. Whew.
Springville roads this morning about the worst I’ve ever driven on—icy, trucks “fish tailing” at 5-10 mph

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).

December 1, 2017

Another Friday. Another Chemo Infusion Clinic
Susie shows Courage amidst fear from past port access struggles. Smooth port access. (Blood clots block line and delay treatment a couple of hours.)

2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.

Crafts make life bearable!
(Silly face for Dad!)

Susie asked about getting a puppy pal.
Told “not during treatment.”
Interacting with nine year old furry friend, Willow.

December 2, 2017

Friends and Family,
Please pray for Susannah—that her nausea and low grade fever will subside. Thanks. 💕

December 3, 2017

Back at Primary Children’s.
Susie has a fever following Chemo.
Rocky Time recently.
Everyone short on sleep.

I.V. Fluids, Rocephin, and Zofran and Susie is good to go! Fever below 100. The Magic Bullet.
Discharged and soon we will be headed home!
Thanks for your kind thoughts and prayers.💕
(We sat across from a Christmas tree decorated with miniature, beautifully painted and framed pictures from local artists—in front of an Auditorium door at 8:50 a.m.
people were gathering, dressed up.
It only hit me at 10:00 a.m. as we were headed to the car that this may have been a Church Service! 😞 Sad to have missed the Spirit brought by talking about and rejoicing together in Jesus Christ, the Light of the World. )

New motto: TOGETHER IS A WONDERFUL PLACE TO BE! ❤️

Home. Restful daughter.
(Noise canceling earphones protect hearing from Freeway deafness—we learned from Audiologists. Chemo increases her risk for irreversible deafness from loud noises. 😬🧐🤨😞).

December 16, 2017

And we are back for platelets!

(And mom is so tired, that I’m more interested in sleeping than Hallmark movies or toe painting. 😴)

I know some of you are wondering…there’s a bidet!
Did Susie’s nails festive.
She succumbed to IV Benedryl (which was good since she can sleep thru the beeping. I can’t.)

We began things cheerfully.
Things got rocky and emotional after the IV Benedryl sleep wore off. A small fever arose and horrible headache. (This seems to be a trend with her and platelets. AB- this time.)
Home now.
Grateful for hospitals, nurses, assistants, Pathologists, and techs. 💕
Hoping for a peaceful, fever free night.

December 20, 2017

Sometimes when one child has cancer, it’s easy to forget your healthy children.

Thank you, Princess and Wild Man, for your original Play,”Who Stole the Cookies from the Cookie Jar!?” (Sunday evening) complete with refreshments and barstool seating!

So thankful for ALL of my children!

Secret Santas…you bring us JOY!

Secret Santa’s, Day 2!

What an amazing day and age we live in when so much I formation is available to learn and study.
Boswellia Serrata (India) is the oil made from Frankinsence Resin.
“A glioma is a type of tumor that starts in the glial cells of the brain or the spine. Gliomas comprise about 30 per cent of all brain tumors and central nervous system tumors, and 80 per cent of all malignant brain tumors.”
Wikipedia

December 21, 2017

Susie’s Secret Santas Day 3:
A work in progress!

December 22, 2017

Secret Santas strike again!

MRI scan at Riverton Hospital.
Clean, friendly, windy, and decorated.
Christmas is coming…

Can you tell who is “done” and ready to go home?

December 25, 2017

More Secret Santa Gifts for Susie—Spaaaaa…

Seriously Secret Santa Spoiled! He he. 💕

Moran Appointment and Tests (Spiritual), Tests (Physical), and more Tests (Emotional)!
A very real “Sacred Grove” complete with darkness and light.
Your faith and prayers carried us today.

Doctors evaluate and mediate.
New thoughts and a new medication to try.
Hope.
Holiday.

More Secret Good Will! 😁

Susie’s Secret Santas revealed—friends Abbie (Emily Russ) and Nielie (Tricia Biggs). 💕
Thank you for hope, anticipation, sweet memories and love.

December 31, 2017

“Mom, I don’t need any more doctors.
I can heal on my own—here at home!”

Cuddles and words of affirmation, love, forgiveness, and wholeness.

November 3, 2017

So…this is happening. Chemo caused Susie’s blood levels to drop. At Utah Valley getting blood transfusion and platelets. (Thank you to ALL the friends who have rearranged schedules today to help with carpools and childcare.)
Susie has been courageous with her pic line. (Port still traumatizing.)

Joe has been Superman at home with the children.

Meanwhile, Susie has had a reaction to the platelets and so necessary reports filed, Benedryl and Tylenol given and more time passes.
Nurse April goes to get the blood transfusion.
Half way done. Eight hours in!

Lots of blessings:
Susie receives: Sprite Zero, Salmon dinner, and PB and apple slices and fresh pineapple for late lunch. Big hit.

We watch Disney Descendants 2 together during Platelets and lunch.

Joe comes and brings me delicious Curry over brown rice from friend! (Thanks Lisa West Fielding.)

Susie gets dinner while she waits for reaction to clear, tests taken, and we wait for blood transfusion.

(Coke was ordered for parent driving in the middle of the night or encouraging “outpatient Susie” on high amounts of Benadryl, to walk to car.)

Hannah gives me a ride home, and Joe stays with Susie.

Joe texts:
11:21 p.m.
Blood started. Filter on iv caused problems. Constant beeping. Now fixed. Just 3 more hours. I’m way tired.

(Just keep swimming, just keep swimming. 😉)

November 17, 2017

Prayers appreciated for Susannah this morning.

Thank you for your prayers! They worked.

Susie wasn’t feeling well and was very worried about port access this morning for Chemo.
We got a call from Primary’s after 8:00 a.m. that her ANC lvls (Immune System) was too low and that they would delay Chemo until Wednesday or possibly the week after Thanksgiving. 😊
An answer to prayers, really.
She will have a higher immune system for Thanksgiving and Christmas, hopefully.
Change of plans—
She’s now in school but very yellow. 😕

October 6, 2017

October 18, 2017

Second ER visit with second child since Sunday morning. I think I should rent a room here—I would definitely get more sleep! He he.
(Susie spiked a fever on Chemo. ☹️)

October 19, 2017

Some darling angels brought Susie a quilt while we were at the hospital. 💕

Now home and she is surrounded by these girls beautiful gift.

ThAnK yOu! 😘❤️

October 20, 2017

“Courage is found in unlikely places”
Fourth Chemo Clinic—Primary Children’s

Susannah has been a trooper today.
Port access difficulty following failed port access trauma at Utah Valley’s ER two nights ago.
Courage shirt needed! (Thanks, Cassy).

Infusion Clinic went smoothly—
Crafts make everything more fun!

What a warm and wonderful quilt for Susannah. I felt it deserved a post to show case just how beautiful and creative it is!
Thank you Gwen, Audrey, Addy, and Margot (and loving leaders and parents like Katharine and Holly LeSue!)

So slow at writing Thank Yous but feel such gratitude for all the help we have received. THANK YOU friends and loved ones. You help us to keep going. 💕

September 14, 2017

My heart touch beyond words. Fourteen year old son fasting for his sisters, midweek, because he cares. 💕

September 23, 2017

Everyone has a story.
Here is a part of ours:

Susie had a “port” (central nervous system line) surgically inserted underneath her skin for easy I.V. access for Chemotherapy yesterday.

Fighting childhood cancer. Go GOLD!
Joe and I trail a small bald child pushing her own IV stand. Here is courage.

We are NOT winning the “war on cancer.”
Spread awareness.

Love is here.
My heart is so full.

A mother is on a cell phone, sobbing.
I wonder if I should stop to hear her story or offer a hug. Feels like an intrusion into her own personal grief.
I say a silent prayer for her instead and hurry on.

Long day. Very short night.

Hot then cold. Shaky and quaky.

Children at home miss sister Susie.
Eva cries. Liam just puts on a “neck beard” (a rice bag) to make her stop and laugh.

Sister Eva worked in her room this morning tidying up for Susie to (hopefully) come home!
“Mom, Liam helped too. He helped with the lights, and that was the tricky part.”

Someone said something silly to make Liam smile. Eva slightly disgusted.

Susie went into anaphylaxis with IV antibiotics and so Benedryl made her sleepy. Breathing back to normal, thankfully.
Just set us back a few hours, but we should be home by tonight.

For lunch we headed to the Ronald McDonald House Rooms.
Earthly Angela from a Relief Society brought in hoagie fixings, salads, chips, and pink lemonade.

Favorite quote was from Liam:
“Mom, look. Look! An ice cream truck.”
“Yes, that looks very colorful. Like an ice cream truck. It’s a city bus.”

And Susie is HOME!

September 27, 2017

Saturday evening at Primary Children’s, discharge papers finally charged and Nurse Dave just must pull out the needle (deport) and we can leave.
Susie motions me down to her level. She pulls my ear closer.
“(Mom) I don’t want to do this!”
“I don’t want to do this either, Baby.”
My voice breaks. We have a silent cry together.

September 29, 2017

Cute new hairdo for Chemo clinic easy care.
(Susie is not enthusiastic about the poofiness of this cut.)

September 29, 2017

Susannah’s First Chemo Clinic Visit done.
(Second dose of Chemo–first round in hospital last week).

We are touched by the love, care, and service that goes in to serving these beautiful bald children (and their parents/family) from so many unseen angels.

August 20, 2017

Went all Summer with no sugar to support Joe on Keto Diet and Susie with her brain tumor.
Told the kids once school started we could roast marshmallows and make Smore’s.
Eva is SO excited tonight!

August 26, 2017

Friends,
In your Fast this weekend, please remember Susannah and her brain tumor. I have faith in God and where He will lead us but also know the strength of your faith.

August 26, 2017

(Shared from Facebook–see video link below.)

Play

July 8, 2017

Had this song running through my head all day today.
Jesus IS a God of Miracles! ❤️

July 26, 2017

Tender mercies today:
Thank you blond curly haired stranger “Julie” from down around the corner for driving my broken child home with her bent bicycle after her wipeout.

Thank you Doctor Johnson for setting her splint on her buckle fracture.

July 27, 2017

Prayers for Susannah appreciated.
She is struggling tonight to get pain from a fracture under control.
Thank you!

July 30, 2017

Susie is feeling much better!
Thank you for your thoughts and prayers.
(Thank you, sweet neighbors, Kristin and Ava, for the darling bracelets and balloon!)

May 7, 2017

(Picture of Anna Ortega, AZ, below)

https://www.gofundme.com/annaishope?pc=fb_dn_cpgntopstickysmall_r&rcid=db81e00000e64b1f82699863def80719&fbclid=IwAR1AXJnakboIL8S0_2ZLZQt3ojMfnYeZDRxP5dU2tlmLEibW8JWyWm18jXc

May 13, 2017

Remember that time that (Lupus and) migraines were getting the best of you, and so your sweetheart bundled the kids in the car to take them on an early morning hike, so you could rest, and they just happened to run into someone you would love to meet…oh wait,
that was this morning!

Happy Mother’s Day to Harriet, from a distance.
(Thankful to Susie who wanted a picture with Elder Dieter Uchtdorf and his wife, Harriet).

May 31, 2017

🌸Friends,
THANK YOU for your prayers today.
All went well. 💕

The Oncologist pointed out the unusually large size and place (contained in the right eye orbit) of Susannah’s tumor.
Inoperable and unbiopsiable.