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.”
Another Avastin (vasoconstrictor) dose. No Vinblastine (Chemo) today.
Hopefully with no Dapsone her oxygen levels will rise over the next few weeks.
No Brown recluse bite. No well water. Uncommon drug side effect.
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
