September 1, 2018
Some of you have commented on my silence on FB.
Susannah, now almost twelve, asked me to respect her privacy.
There are many beautiful things I have journaled and longed to share, because on this journey, these precious stories may strengthen you and your faith, too.
(I was meaning to start a blog, more on that later…)
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.
September 6, 2018
This Cancer Journey has been mind stretching and eye-opening. ❤️
Did you know you can develop birth marks any time—not just “at birth” as I always thought?!
Did you know that these “birth marks” can be subjective to environmental and situational hazards?!
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!
September 8, 2018
Since Susannah’s diagnosis, two of her siblings have manifested anxiety disorders.
Cancer is a battle fought by the whole family.
❤️
