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Ross' Journey 
My youngest child, Ross, was diagnosed with an inoperable, intrinsic large Diffuse Pontine Brainstem Glioma on
October 2, 2001, at age 10 years 8 months. The tumor measured 6.0 cm at diagnosis. Because of a complicated history which intuitively led me to change pediatricians five times from birth to diagnosis, as well as my use of an assortment of other types of physicians, it was the inoperable nature and location of the brain tumor which came as the real shock to me. The older than middle-age neurologist who delivered the diagnosis to me returned from a back room in his office with a glass of scotch and pack of Pall Malls, and bravely or not so bravely, depending upon your outlook, faced this mother. Ross and I had actually been released after his MRI a day and a half earlier. I had been preparing each of my children for a serious diagnosis for some time, and had refused to place Ross in any school believing there was a medical explanation for the difficulties Ross had experienced, though I had no medical confirmation that Ross was suffering from anything other than a moderate to severe anxiety disorder, and more recently, possible ADD and learning issues. I was told to expect a mild seizure disorder - if anything. For Ross, the diagnosis brought relief from an assortment of psychiatric and educational labels I was uncomfortable with. He was a new child from the moment I broke the news to him. The increase in his maturity and ability to cope was profound and immediate. His passion for life and laughter increased as well. The MRI revealed a large brainstem tumor lying predominantly within the right portion of the pons, with slight extension within the left pons, as well as extension into the midbrain
and the medulla oblongata. The tumor had a large 2 cm. exophytic component situated
within the pre-pontine cistern. I believe a portion of the exophytic component reduced one year after the end of radiation since the tumor measures larger than at diagnosis (the exophytic component was probably not included in the original measurement), though there has been no growth. There
is mass effect of the fourth
ventricle and mild hydrocephalus. Ross is not on steroids, nor has he had shunt surgery. A biopsy was performed by Howard Weiner, M.D. at NYU Med Ctr on October 11th, 2001. I was told the pathology was inconclusive. In November of 2001, an MRI of the spine revealed two abnormalities - a small thoracic spinal cord syrinx at T-5 through T7 -- T8 levels and a segmentation anomaly at C2--3. I am told these are congenital abnormalities unrelated to the tumor. In February 2003, I sought an outside opinion about a mass on Ross' left front ankle I had noticed more than a year earlier. I was told it was caused by either "sneaker friction or an old injury." I found this explanation difficult to believe. An MRI revealed a soft tissue mass (2.6 x 2.6 x 0.9 cm) which was biopsied, but not completely removed. A smaller lesion had been discovered in the left heel and was completely removed during surgery. The pathology revealed the soft tissue mass was benign and due to a "history of an atypical gait," which no one ever noticed, though I had brought Ross to several physicians regarding holding his left arm for quite some time in an ambulatory position while running. I do not know how or even if Ross' unusual medical history from birth through diagnosis is related to the tumor in his brainstem. Suffice it to say, I have my own ideas. Ross received a terminal
prognosis of slightly over one
year at best, prompting me to
withhold treatment until Dec. 2001. The tumor did not enhance with contrast at diagnosis, nor grow when treatment was withheld.
"Those who learned to know death, rather than to fear and fight it, become our teachers about LIFE. There are thousands of children who know death far beyond the knowledge adults have. Adults may listen to these children and shrug it off; they may think that children do not comprehend death; they may reject their ideas. But one day they remember these teachings, even if it is only decades later when they face 'the ultimate enemy' themselves. Then they will discover that these little children were the wisest of teachers, and they, the novice pupils." - Elisabeth Kubler-Ross, M.D., On Children and Death
To My Brother
warm feet scrunched together
in the comfort of static cling
snoring purring calling
running falling
I smooth each nightmare
from your brow
kissing every childhood scar
brushing down every rebellious cowlick
your history impressed in my soul
heart
mind
memory
replaying again and again
like a bedtime story
in slow motion
I crave each imperfection
every single flaw which makes you You
because when I sleep
I see you
eating caramel on your sundae
just a boy with calloused hands
palm to palm
with my nervous fingers
and in my dreams
we link trembling pinkies
and make a vow
to stay like this always,
while you color me perfect.
Your Sister,
Adria
(October 2002)
Journal
Sunday, September 11, 2005 1:45 PM CDT Great News. Stable - 4.7 cm x 3.6 or 3.7 cm. MR Spect still shows elevation of choline and decreased NAA peaks. I'll have the report and scans on the 19th of September after our appointment.
I have been researching Ruta 6 and Calcarea Phos. and plan on giving this a try after I hear from the physicians involved with it.
Will update with news soon.
Annemarie
Read Journal History
Hospital Information: Patient Room: Home Dx: NYU Medical Center
Biopsy: Dr. Howard Weiner, Neurosurgeon - NYU Medical Center
Treatment: Radiation and Concurrent Chemotherapy
Dr. Jeffery Allen, Neuro-Oncologist - Beth Israel North
Links: http://www.childhoodbraintumor.org/brain.htm Brain Stem Gliomas in Childood
http://quiltsoflove.com/quilt_2004/rossG/rossG.html Ross' Quilt of Love
http://www.tumbleweedfoundation.org/ Featured Child - March 2004
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