Our
Journey:
Avalon's Army of Angels
September 10, 2008
Physical Medicine appt and New Friends
Busy, Busy day, and I got exactly nothing done.  Weird how that works, isn't it?  

Avalon had her 6 mo appointment in Physical Medicine.  Because of her
neurological/muscular issues, Avalon is followed by both Physical Medicine and
Neuromuscular medicine.  Each doctor has her on a 6 month rotation, so that someone they
"trust" is checking her reflexes every 3 months.  (Dr. Mendell from neuromuscular only trusts
Phys Med doctors for real reflexes)  

Sadly, we didn't get to keep our last Neuromuscular appointment, it was during the week
Avalon was in-house following the botched May 28 shunt surgery.  I spoke to Dr. Mendell on
the phone from the unit, but he said there was no point in seeing her when her brain was in
such turmoil.  Therefore, its been a full 6 months since someone has checked out her nerves
- I was curious about what we might find.  

The "catch-up" part of the appointment was pretty intense.  Since we've seen Dr. Batley,
Avalon has been diagnosed with slow motility and definitively diagnosed (it was suspected
before) with Central Neuropathy.  The GI and Central Neuropathy issues are important to
PhysMed and Neurmusc because they're nerve issues, and part of Avalon's bigger picture.   
In fact, Dr. Mendell in Neuromusc is the one who had hypothesized about Avalon's Central
Neuropathy.  He's definitely brilliant - he was dead on, even if we didn't know it yet.

Back to our current appt though.  The lion's share of our discussion was about the May
surgery fiasco, the problems it caused with Avalon, and the resulting July decompressions.  I
was honest with Dr. Batley, and asked her if she wanted to hear the politically correct version
of events, or if she wanted the truth.  I'm thrilled to say she opted for the truth.  Again, this is
what I have come to expect and love about our hospital.  Truth and honesty has always been
paramount in Avalon's care.  Like I told Dr. Batley, I haven't always liked what I've heard, but
I've always known I was hearing the truth...until Voldemort.  His lack of ethics is as appalling as
his lack of surgical skills.  

Anyhoo - I'm off track again.  I did, indeed, report all events and the fall-outs from them with
blatant honesty.  I needed Dr. Batley to know the truth, because its Dr. Batley that will have to
help me deal with Avalon's issues, and sadly, Dr. Batley who will eventually be seeing other
children who've suffered under Voldemort's scalpel.  As for Avalon, there are some new
issues.  

Overall, Avalon's reflexes are still there.  (She had lost reflexes for over a year)  Dr. Batley
said they haven't improved in the past 6 months, but they are all present.  When Avalon got
her reflexes back, Dr. Mendell had given us three possibilities:  they would greatly improve
over the next 6-12 months, they would stay the same pitiful, but present reflexes, they would
disappear again.  I'm thrilled that they're at least still here, even if they're "nothing to write
home about".  Weak is still better than absent.  

Dr. Batley also found evidence of what I'd been describing, Avalon's advanced Right hand
weakness and lack of control.  Last September's Neuropsych Evaluation showed Avalon to be
R hand preferential, but with less control of the hand than her left.  (think being R handed, but
its like always trying to write w/ the L hand)  After the awful May surgery, I noticed even less
control of the hand - and more use of her Left for a while.  She is still struggling with things like
puzzles, coloring, writing.  Her fine motor skills are really bad.  Dr. Batley's exam confirmed
that by finding
blah blah that indicates blah blah...  Sorry folks, I don't have the foggiest clue
what the actual words are.  For once, I had a doctor completely stump me.  She not only
produced words and diagnoses that I haven't heard, she did it so smoothly I couldn't store it in
my pea brain for future reference.  
Blah Blah is as good as its going to get.   But what it all
means is, Dr. Batley found reflex/muscle evidence of what I reported seeing.  Nice to know I'm
not crazy or imagining stuff - but still rotten to hear about yet another hurdle.  Oh well, at least
we have her to hurdle with!

As Dr. Batley and I discussed the events of the Spring and Summer, and how disappointed I
am in the hospital's response to them.  We also talked about how I feel about "our" hospital.  I
expressed to her that the thing I find the most disturbing, is how much of an anomaly
Voldemort is.  Avalon is seen, or has been treated in 29 departments.  We've been blessed to
meet people of great intellect, and even greater heart.  I recalled the day Avalon's oncologist
got teary as he apologized for causing her pseudo tumor.  He didn't do it, cancer and chemo
did - but he cares so much it hurt him.  He gave me such a gift that day...he cared.  To now be
battling a man of such evil intent and lack of caring, its sickening - and I don't understand how
the hospital is endorsing it.  Dr. Batley agreed.  

As we were walking out, Dr. Batley said she'd often cried with parents too.  I told her I'd
guessed that, its why I like her so much - I could tell she was a softie.  I got a lovely hug, and
knew once again, that the universe has a good plan.  We are blessed to be exactly where we
are.  Dr. Batley doesn't dismiss Avalon's issues, she doesn't belittle them.  She recognizes
them, explains them, and tries to help me deal with them.  When we discussed Avalon's
energy issues today, and I said the older kids and I have a kind of energy barometer, we know
what will cause her problems, etc, Dr. Batley laughed.  She said its an ages and stages thing,
eventually Avalon will figure it out too.  But, she likes that we just let her live, let her do what
she wants - and deal with the fall out.  Its the best she could recommend for a kiddo like
Avalon.  She really does understand - and we truly are lucky.  Yep, I'll be sure to hug her
again next time...

After her appointment, Avalon and I met up with two new friends, Wendy and Christian.  They
are here, from Georgia, so that Christian can have a temporal decompression like Avalon just
did.  They're actually here with another family, whose 6 yo daughter is also going to have the
procedure.  Long story short, both children developed pseudotumor (intracranial hypertension
- ICH) after taking the same drug for strep throat.  Both were perfectly healthy kids before
taking this drug.  Now, they both suffer from excruciatingly high pressures, and have had
several failed shunts.  According to Wendy, they know of another young girl who has the exact
same history.  They're all trying to work with the FDA to report this as an adverse drug effect,
but haven't had much luck yet.  

Wendy and Christian came to see Dr. Kosnik, because of a relationship they'd formed with Dr.
Katz during the ICH conference over the last two years.  Dr. Katz is a neuro-ophthalmologist at
Ohio State.  In fact, he's not only
my neuro-optho from when I had ICH, he is also a
contemporary of Avalon's neuro-optho, Dr. Benes.  You can sing
Its a Small World now...

Anyway, Kristian hasn't had the best of care during his battle with ICH.  After a recent
nightmare stay in ICU, Wendy was at her wits end, and contacted Dr. Katz.  He arranged this
trip, to meet with Dr. Kosnik - and see if he had any ideas.  Funny timing, because Dr. Kosnik
had just done Avalon's surgery.  Therefore, he recommended the same procedure.  Where
Dr. Benes thought it was a stroke of genius, Dr. Katz was pretty shocked.  Kind of tells you the
difference between them, Dr. Benes has been around much longer and actually deals with
kids with ICH - Dr. Katz and his neurosurgeon co-hort Dr. McGregor are insulated in the ivory
towers of OSU-adultland.  Considering Dr. McGregor refused to see Avalon, even after Dr.s
Benes and Katz begged him, I was pretty disgusted to learn yesterday that he gave an entire
lecture at the conference on "Kids with ICH".  I'd like to know how in the Hades he thinks he's
qualified to talk about that?!  He certainly hasn't actually
seen or interacted with one.  Again, I
digress....  

Lunch today was so Wendy and Christian could ask more questions about what to expect, and
so they could see Avalon's scars.  I did my best to tell them everything I wish someone had
told me over the course of multiple stays at the hospital.  We covered what to expect in PICU,
what to expect on the normal floor, hospital procedures, and even the boring-but-useful stuff
like where to eat, and where the best fishtanks are.  I thought of it as Nationwide Children's
101.  

It was nice to chat with other people who have been down the high pressure path.  After
beating my head against walls for the past 2 years, feeling like the neurologists and
neuro-surgeons weren't even remotely listening - it was nice to swap similar stories with
someone.  Wendy has had a much more difficult time finding help.  You see, we've been
blessed since Day 1 with Dr. Ranalli and Diane, Avalon's oncologist and Nurse Practitioner.  
They have been a force to be reckoned with - constantly advocating for her, and willing to
learn from her neuro-optho.  They have been our angels in armour, and have gone to bat for
us so many times, we have to have completed several innings by now...  I've told them a 1000
times how much I appreciate them, but after hearing Wendy's tales of woe,  I will most
assuredly thank them again at our next appointment.  We really were blessed to have them.

We have also been unbelievable blessed to have Dr. Benes.  When I've argued with
neurologists and neurosurgeons about the cognitive effects of ICH, they've always dismissed
me out of hand.  Dr. Benes never did, she completely saw my logic.  Turns out, Wendy's been
arguing the same thing.  She happens to be a psychologist, and had, by sheer coincidence,
tested her son's IQ shortly before he developed ICH.  A year later, he'd lost nearly 40 points.  
Ummm, yeah, I think that's the proof of what I'd been trying to tell everyone.  Oh, and here's
where the Johnny-come-lately crap from Dr.s McGregor and Katz really irritates me.  
According to Wendy, Dr. McGregor is now trying to start a cognitive effects from ICH in
children study with the OSU psychology dept.  
REALLY?!  Funny, he hasn't bothered to
contact me, or any of Dr. Benes' other LOCAL patients.  And he certainly hasn't bothered to
see any of them....but by golly, he should be the one to devise a study.  Oh puh-lease.  He
wants the recognition of doing research, but can't be bothered to speak to me - you know, a
mother of
a local patient!  Color me horribly annoyed, and frankly, hurt.  

As it turns out, Columbus has 7 of the 29 kids that are registered as having ICH.  Wendy
ever-so-erroneously labeled that as a "pocket" of ICH.  She's dead wrong.  What it is, is a
tribute to an amazing oncology department, and a determined, dedicated neuro-ophthal, Dr.
Benes.  Our oncologists have learned about ICH from Avalon and an older girl (also a
leukemia kid, also a Benes patient) .  They know what to look for and are on high alert for it.  
When Avalon was finally diagnosed, they realized they'd been possibly missing the signs in
younger patients like Avalon.  They invited Dr. Benes in for an in-service, and have identified
new ICH patients because of it.  Our Onc dept
listened, paid attention, and cared....that's why
there are more patients here.  There aren't really more patients, just more that have been
properly identified.  Funny how OSU had NOTHING to do with that.  

As frustrating as I found the entire discussion about the OSU docs (because Wendy worships
them), I did understand her devotion.  Dr. Katz and Dr. McGregor actually listened to her, and
went out of their way to get her help.  (even if they can't be bothered to do the same with local
kids)  I'm similarly devoted to our oncology family - because that's what they've ALWAYS done
for Avalon, and for all their patients.  They are the most amazing advocates anyone could
ever wish for.  They have saved Avalon's life more than once, and have worked tirelessly to
ensure she enjoys the best, fullest life she possibly can.  In other words, yes, I was
disheartened to hear how the OSU doctors tried so hard to listen to a "stranger" when they've
ignored their own colleage (Dr. Benes) and their own patient (me).   However, my
sadness/anger was so far over-shadowed by my gratefulness for our own care-team, that I
couldn't help but see the day as a positive.  Avalon has been blessed from the first hour of
her diagnosis, to be surrounded by a team of amazing people.  With the resounding exception
of Voldemort (and the idiot administrators who support him), our hospital has provided
exemplary care and concern for Avalon .  We have been the luckiest people on earth.

I'm sure I'll keep in touch with Wendy, I want to take part in any future research about our kids.
 I'm also quite sure I'll sit down (soon) with Dr. Katz and McGregor and tell them exactly what
I've said here.  At the very least, Dr. Katz owes me an apology for arguing with me in June
about aspects of pediatric ICH, that two weeks later, he suddenly decided to believe from
Wendy.  I know him to be a good man, I'm sure we'll have a productive discussion.  Dr.
McGregor will have a harder time with me, I want him to look me in the face and tell me why
Wendy's son mattered, and my daughter didn't (he offered to operate on Christian if Kosnik
wouldn't).  I'm not sure I'll be able to forgive that one.  But I've done too much to support
cancer kids to walk away from this.  Wendy is a bit short-sighted, only really seeing the ICH
kids that are like hers.  The fact is, a majority of ICH children developed it secondary to either
cancer or sickle-cell.  Either way, its a Heme-Onc issue, and those are the kids I fight for.  So,
no matter how much McGregor's grandstanding irritates me, I'll put up with it, if I can help our
kids.  Maybe I'll manage to teach him a bit of humility along the way.....

At any rate, it was a good day.  Avalon's issues with nerves and muscles are understandable,
and I made a new friend who understands my rantings about brain damage.  Have to call this
one a solid B+ day.  

Thanks for stopping by!