9-1-18
Hi! My name is Julie Campbell, and I have chosen this platform to copy some of my facebook posts that record the journey of my daughter, who has cancer.
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 currently 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.
