Hi, everyone ~
I just wanted to say thank you for all of your kind words of encouragement. Many of
you have dropped me short notes to offer support and to let me know that we're in your
thoughts. I've even gotten notes from people I've never met. Even though I
haven't been able to respond, please know that I do appreciate your thoughtful words and
have found each and every note very moving. Its been helpful for me to remember that
there's a whole different world out there, besides the one we've been living in for the last
week.
As you might imagine, Albert and I have quickly become brain experts. My 10th grade
biology teacher was not very compassionate with me over the whole frog-dissecting
incident, but I think he'd be proud of me now. In just one (very long) week, I can
converse with the best of them. Here's a little information about what we're up
against...
Pediatric brain tumors are sometimes very difficult to diagnose and to treat, but
surprisingly are the 2nd most common form of cancer in children - second only to leukemia.
Ethan's tumor was located in the right occipital lobe, which controls vision and some
cognitive reasoning. The tumor itself and the surgical removal have almost certainly
caused a neural deficit, but the extent of the deficit may not ever be fully understood -
and certainly not even estimated until he is much older and can be thoroughly tested.
He's very likely to have some difficulty reading when he is older, as he may not be
completely able to translate the input he receives from his eyes.
Pediatric brain tumors are full of irregularities. It is very challenging for the
Pathologists to determine which irregularities are normal and attributable to age (young
brains still developing) and which are abnormal in the sense that they are actively
destroying healthy brain tissue. During our final consultation with the
Neuroradiologist, Neurosurgeons and Oncologist on Friday, I counted at least 8 different
Pathologists who were all consulting on the diagnosis... most of whom were Pediatric
Neuropathologists (who knew there were such specialties??). There is also a team at
the Johns Hopkins Oncology Center doing an secondary independent Pathological assessment.
We hope for a final report by the end of this week which will help define the
course of further treatment.
As I told Neal, the preliminary pathology report suggested that the tumor was indeed
malignant, or fast-growing. In the world of brain tumors, benign and malignant are
almost misnomers. Tumors are designated as
slow-growing (where benign terminology is sometimes used) and fast-growing (referred to as
malignant). Regardless of their classification, nearly every brain tumor needs to be
removed if it is surgically accessible. Further, because the Pathology of these is
so complex, many pediatric brain tumors (benign or malignant) receive similar treatment
protocols (chemotherapy and/or radiation) because few, if any, tumors are
allowed to simply exist. There's just too much at stake in the
brain. Even a slow-growing or benign tumor can be life-threatening if
left untreated.
The World Health Organization uses a 4-grade classification system for brain tumors, with
each grade specifying an increased degree of malignancy.
Grade I - Very slow growing with excellent prognosis for
long-term survival.
Grade II - Relatively slow growing, can reoccur and sometimes
reoccur as higher grade
Grade III - Fast growing and tend to reoccur
Grade IV - Reproduce rapidly are likely to reoccur.
The grading system is not entirely precise and therefore open to the subjective assessment
of the Pathologist(s). The benign/malignant distinction is between grades II and
III, which is also where the most gray area exists. Its also not uncommon for one
tumor to contain several grades of cells. The highest grade cell within the tumor
determines the final classification. Even if the vast majority of the tumor is grade
I, a single grade III cell will tip it into the malignant category.
Our neurosurgeon called last night to give us some good news, which is that the results of
his spinal tap came in and that all of his fluid is clear... nothing has spread into the
rest of his central nervous system. For us, we interpret this in one of two ways:
Either the tumor is slow-growing or if its fast-growing, we may have caught it very
early. Final Pathology is due late this week or early next, and its possible that
the grading may be different from that suspected in the preliminary assessment.
Ethan is doing pretty well. Yesterday was a very hard day for him... his medications
made him very sick. Today seems much better so far. Both he and Kyra are
experiencing very odd sleep patterns, so of course Albert & I are too. Just one
more interesting aspect to our life right now.
We have a follow-up appointment with his neurosurgeon on Friday and hope to have more
information about the state of his recovery. We also hope to get a lot of insurance
questions answered. A cheerful voice called us this morning to tell us that the
neurosurgeon is out-of-network. Uuugh! Brain surgeons are probably not too
expensive, right?!?!?
I wish there were courses offered in navigating health
insurance... I just came to closure on a 7-month insurance snafu in which the
anesthesiologist erroneously billed my epidural (which, by the way, was
too-little-too-late this time around...)
to "baby-girl-Gumabay". Since baby girls have little need for
epidurals, the insurance company would not pay the claim. AND, on an
entirely different level, this service was rendered just minutes
prior to 'baby-girl-Gumabay's" arrival, but technically the day before
Kyra's birth date, causing an indescribable insurance headache to ensue. But I digress... I'm optimistic that we'll be able to straighten
out the impending insurance game before Ethan goes to college.
Thank you again for your support... I hope none of you ever have to experience this
type of thing first hand to fully understand how much your support has meant to me and to
my family.
Warmest Regards,
Kim (Bert, Ethan, and little Kyra)