Holly McRae: Update from Hawaii

Holly McRae updated her journal over at CaringBridge today with a profoundly moving entry on her daughter Kate, their "sweet girl." The whole family has been on vacation in Hawaii, swimming with dolphins, relaxing -- but never really escaping the reality of pediatric brain cancer.  They are headed home in a few days and back to tests, procedures, and treatments.

Holly is an amazing writer and a more amazing parent, mother.  Today, she seemed to feel it necessary to defend herself for being honest -- even when her honesty is so infused with integrity and faith that my spirit is inspired, no matter how sad the news. 

I know her statements today must reflect some unkindness that she has encountered, perhaps someone's refusal to meet her where she happens to be, or -- worse -- someone's judgment of how she and Aaron have painstakingly chosen to proceed.  And that makes me really sad... but mostly angry.  (As much as Holly inpires me, I clearly have a long way to go...)


Link to Kate's CaringBridge Page

Teaching Life Skills: Nothing New Under the Sun

Is it true that there is nothing new under the sun?

I believe that we may soon have to stop beginning sentences with "Someone ought to..." -- followed by "pass a law," "invent a new plot for murder mysteries," "do something about [all the things I am too lazy to address]," and, now, "write a Guide to Life."

At some point on my journey with disability, I subscribed to a governmental online publication called, creatively, the Disability.gov Daily Digest Bulletin -- my daily link to a website dedicated to "Connecting the Disability Community to Information and Opportunities."

I don't check out all the forwarded information, in part because the descriptions are so dry and uncool.  Dry and uncool, I like to believe, are not my thing.

But, once in a blue moon, usually in a period of high anxiety, I follow up.

A pictorial debt of gratitude to Dave's Cupboard, specifically a blog entry titled "Stupid Small Appliances."
Photos above: The Pancake Factory, The Salad Shooter Pro, and The Presto Tater Twister

This afternoon, Fred and I did a little decluttering, mostly of accumulated and unused small kitchen appliances.  The adage by which I was raised, that "[i]t only costs 10% more to go first class..." --WHAT?  Weren't we all raised by that tender admonition?  Didn't you hear that at every turn, at every developmental milepost? *

Anyway, we got rid of our cheap, plastic versions of your classy, desirable things -- like our Combination Espresso / Cappuccino / Juicer / and Jörg Führmann Grill.  Sure, you may have four separate, gleaming, monochromatic stainless steel, functional appliances -- well, la di da!

We started reflecting -- as we always do -- on the life lessons learned.  Turns out, this time, we were reminded of a corollary to the classic "what is worth doing is worth doing well." It's not so much that "what is worth buying is worth buying expensively," or even "it's best to purchase the best." It's more, "remember to upgrade according to your aging temperament"!

Once upon a time, I did not mind cleaning by shoving toothpicks up the slightly defective nozzle to the cappuccino steam nozzle (that doubled as a Miniature Pancake Maker in its Jörg Führmann Grill incarnation).  Spending twenty minutes scraping dried dairy foam seemed fair enough, given the joy I'd gotten from that tiny, tiny cup of coffee...  Now, though, now that the onus of caring for Marlinspike Hall rests on our shoulders?  If we're going to have cappuccino, it's either fork over the money for a decent machine, or discover the ease of doing it without a machine at all!

We reflected further -- as we always do -- but now, over a quick espresso.  In the course of our talking, we discussed child-rearing, having recently witnessed some bothersome examples of ill-mannered behavior that could only have begun in childhood (namely, the sight of a man urinating on the side of a neighbor's chateau).

Before we knew it, "[s]omeone ought to"s were flying out of our mouths!  In particular, "[s]omeone ought to publish a guide to raising kids, so that they learn not to pee on the sides of houses and to buy decent coffee makers."

At which point, I retired to the Computer Turret to check my email and blog traffic.  I've been feeling nervous about all the semi-formed plans to go to Philly for CRPS treatment -- how was I going to swing travelling that far when a trip to the Lone Alp in central Tête de Hergé can be debilitating?  Never mind trying to figure out how to pay for it!

Enter Disability.gov, of course.

I think with just a little effort, that website will serve as a terrific guide to taking advantage of this wonderful opportunity that has fallen into my undeserving lap.

Then... another entry caught my eye, and brought back my conversations with Fred:  Ready, Set, Fly! A Parent’s Guide to Teaching Life Skills.  I don't know yet on what page they discuss the complex issue of Being Sure to Urinate in a Bathroom and Not on the Side of Someone's Home, but Casey Family Programs, a Seattle-based Foundation started by the founder of UPS, has wonderfully and creatively managed to cover most everything else.

I mean, how great is it that the Guide discusses not only how to clean a Living Room, but also what a Living Room is, and the things that might be used or necessary to it.

Oh, puh-leeze, People!  I am years away of being over getting upset that there are kids growing up without Living Rooms, or without knowing how to clean any sort of room, much less a luxury room like a Living Room.  Get over it.  Wait until you get to the "ABCs of Pregnancy" -- not what any of us want as part of a parental guide...

What has been will be again, what has been done will be done again; there is nothing new under the sun.





* Honestly?  I still live by "[i]t only costs 10% more to go first class," though I am more and more aware that the 10% figure is in dire need of upward revision.

Philly Bound?

I rarely send out an email loaded with blind copies, mostly due to the divergent nature of my group of friends and family.  This morning, though, was a wonderful exception. 

Hi --

This is a group email. I wanted to update everyone on the latest. An opportunity has come my way that I am excited to pursue.

Dr. Robert Schwartzman is one of the few true experts on CRPS/RSD in the world. He was the first to follow strict research protocols in the administration of the so-called Ketamine “coma cure,” pursuing this in Germany with great success. Dr. Anthony Kirkpatrick has a similar program in Mexico. Several years ago, they began investigating subanesthetic (i.e., non-coma) Ketamine infusions, and this option has become available at a short list of places throughout the United States. However, not every site employs the same protocols for administration of subanesthetic Ketamine, so it is sort of a mixed bag in terms of success.

I was lucky enough to find a location offering the treatment here in Tête de Hergé. Unfortunately, the protocol being used there is more conducive for treating other types of severe, intractable pain. It seems that CRPS responds best to what amounts to a blitzkrieg – [outpatient]10 days straight at a fairly high dose with follow-up “boosters," or [inpatient] 5 days continuous infusions, also at a high dose. The program at the X Center here is limited by funds, space, and staffing, and currently can only offer the treatment 3 days a week in short sessions.

After 6 infusions, spaced over a couple of months, I had no improvement. I wrote Dr. Schwartzman two weeks ago, asking what could be done to optimize the impact of the infusions. He wrote back with some explanation of the protocol he believes most effective, and invited me to see him in Philadelphia, where he is Chair of the Neurology Department at Drexel University College of Medicine. But it turned out that he has over a 2-year waiting list of patients, so I curbed my enthusiasm and began to scope out other options – for example, there is a Ketamine program at the Hospital for Special Surgery in New York City.

Then, yesterday afternoon, I got an email from Dr. Schwartzman’s Clinical Nurse Specialist, Ms. D, offering me an “expedited appointment.” It’s been a good while since I have cried for happiness.

Ms. D added: “He would also welcome your physician and/or the staff at x Institute to come to his RSD pain clinic any Monday to observe and discuss treatment protocols.”

There are still substantial problems and variables to address, beginning with any “exclusion criteria” they may employ at Drexel, and the logistics of getting there [$$$]. Even so, it would be worth going simply for the evaluation, I think.

Clearly, I am not quite done with what the X Center is offering and will see the doctor there soon.

[Click HERE for a short bio of Dr. Schwartzman.]

I have not been the most reliable communicator these past few months and hope everyone can forgive me. Of course, some of you are likely sick to death of hearing from me, and to those folks, I can only say “Thank you for your forbearance.” If anyone has any great ideas on how to get this done, please write. (Would you like to go with me?!) And if EVERYONE would think good and encouraging thoughts, I’d appreciate it!

Best wishes to one and all --

(Bianca; Eljay; Prof -- and other assorted noms de plume)