happy being trevy

A friend recently asked me to share Trevor's story (thus far) in a video. She's a professor of psychology and thought it could have an impact on her class. I did the best I could with the tools at my disposal. For once, I was kicking myself for not getting that MAC.  I was even tempted to use iMovie on my iPod rather than messing with Windows Video Maker.  Somehow it came together. I confess that it was harder than I thought going back in time like that. Difficult…but also healing.  It’s easy to get caught up in the sadness of the now and overlook the joy of how far you’ve come. If someone had asked me to write the wildest script I could imagine for our family six and half years ago...it would not have come close to the path that has unfolded. Even though this journey with Trevy is very heavy and extraordinarily exhausting, we are SO thankful for where he is today. How far he's come. For the people who have come beside us to advocate for him and support and believe...

  I’ve been silent on this subject for a long time now.  Too long.   During the silence Questcor has gathered their arrogant loins about them and is once again seeking to pillage the most vulnerable.  In the words of my friend and fellow Infantile Spasms advocate, Mike,   “the IS Community needs to band together and insure that our kids are protected.  Screw me once shame on you.....Screw me twice shame on me...”   While our open letter is aimed primarily at our community, the Infantile Spasms Community, we fully appreciate that the impact reaches further.  You have our complete and full permission to share at will with those whom you feel this will impact.  Together , we can make a difference!   **********   Questcor, the company that acquired the rights to Acthar (ACTH) in 2001 and jacked up the price of this Infantile Spasms treatment, is at it again.  They have acquired the U.S. rights to another IS treatment – ...

I think the very first med speak phrase we became familiar with upon entry into the Infantile Spasms Community was… Benefit versus Risk There is more clarity on the physician side of things.  They think in black and white objectivity.   Not so much on the mommy daddy side, though.  We think in the “Oh my God, this can induce what?” or “the vision loss is permanent?” murkier side of things.  Sometimes Benefit vs. Risk is really very subjective. It’s more… eenie meanie minie mo, if you ask me. When removing portions (or halves) of brains, for instance.  While the surgeon might look at me holding my completely non-verbal two year old through a cluster 50 strong and tell me there really isn’t any other choice.  The trajectory is death.  Which is ripped for our real-life story and is almost verbatim what Dr. Neuro-surge told us in his office.  The conflict that murkied the waters was…I wanted to KEEP ...

I’m not sure how else to put it other than to just go ahead and say… I hated it! Hated.  It.  Just wait until I tell you what I’m talking about before taking my side.  Because chances are…you might not agree with me.  And I’m totally comfortable with that.  See, I’m on this new mission to be totally completely honest.  All of the time.  Including now.  Especially now.  When I’m discussing something that I abhorred from the tips of my chipping multi-color (compliments of Bristel) polished toes to my splits ends! And the worst part of it is… I was really looking forward to it too.  What a let down.  We’ve been dvd watching fools.  Ever since we learned that Netflix would be joining the Capitalists R Us Club.  You did hear that new this month Netflix will now be charging a fee for each service?  No more dvds and live streaming together.  Oh no.  Now you have to pay for th...

I'm a sucky nut-sheller.  Apologies.  If it helps, I often wish I were one of the clever people .  The clever people have the ability to wrap all their thoughts up in two or three paragraphs.  Sometimes even sentences.  Succinct while not losing the wit.  And never go back for a post posting edit.  Or two.  Or three.  Million.       Yeah.  I'm not one a them. I suppose I'll have the thicker book someday.   ::smile::   But, really, it's hard to pare down 8 months worth of conversation.  Plus all the yesterdays  and tomorrows stirred up with it.  Can you believe it's been 8 months since our last neuro appointment?  That's twice as long as it should have been.  Things move at a snail's pace in Bean Town.  We've been waiting since September for Dr. Neuro to get credentialed.  Dr. Neuro has always been Trevy smitten.  Especially with his eyes....

Our fave Dr. Neuro is moving.   Has moved actually.   From our local Children's Hospital.  To Boston Children's.   Ordinarily I'd give a big squeeze and with a best of luck.   But nothing about Trevy's journey is ordinary.  Including her.  She's amazing.  She has been with us since Diagnosis Day.  Through seizure freedom.  Relapse.  Med trials...both singulary and cocktailed.  She passionately advocated on Trevy's behalf...for Acthar to be covered by insurance...for radical brain surgery to be covered too.  I have her cell.  And emails...both work and personal.  She is always...always...always...available.  She trusts me.  And perhaps even more importantly... I trust her .   So we've decided to stick with her.  Commute n' all.  Because, really, how could we do any thing else?    Although the what should have been a one hour trek turned into two be...

Three Thanksgivings ago we were admitted into our local Children's Hospital.  Trevy would be spending his very first Turkey Day inpatient.  So little.  Too little.  Our beautiful baby.  We were still reeling from the diagnosis.  Unpacking our luggage.  Because as Life would unfold...we wouldn't be catching that plane back to Tanzania in two weeks after all.  We were emotionally exhausted on all sides.  One being from battling our insurance company (I must always inject: AIG) for a week - we had finally won the $125,000 battle.  Preparations were made for Trevor to start his first course of Acthar (or ACTH) the day after.  It's a bitter sweet memory.  Bitter...because would to God we had stayed ignorant of this thing called Infantile Spasms.  Sweet because Bibi and Babu had canceled their own return to Africa flight.  And were instead surrounding us with love and support.  Along with Grams & PopPop and a whol...

I don't have tons of time to (do much of anything really) read through all the emails filling my inbox from the various IS forums I belong to. But this one caught my eye...and is being shared with permission of the family. ********** Hi all, Has anyone else had trouble getting ACTH? We had it prescribed on Monday . On Tuesday our neurologist office faxed everything to the insurance company and to Acthar Support and Access Program. It seemed like all was moving along and we'd have the ACTH in hand on Wednesday or Thursday at the latest. Then we got called yesterday that there was a delay with the insurance ... that it looked like they were going to cover it under major medical (with a $5200 copay on our part that "should" be picked up by a national organization for rare diseases??) but that it hadn't been approved yet . I have had 8 phone calls today between the ASAP program and the insurance company and nothing has happened. The nurse wh...

Do you know how difficult it is to pound out a post. With a 30 lb toddler on your knee. Cranky and clingy. Because he just had half of his brain removed . With the goal of gaining seizure control. To beat back the Monster inside his head. Which...according to the team of neurologists from Children's Hospital of Michigan...was attacking his developing brain more often than there are seconds in the day . And that after two rounds of Acthar . ( you can read about the hell we went through to access it for our son here and here ) The drug with the hefty price tag (click here if you're curious what 60k looks like...keeping in mind that a whole course runs about 125k) . The drug with the hefty price tag belonging to Questcor . You know...the ones who sponsored Infantile Spasms Awareness Week. Come again? You say...you missed it? Hmmmmmmm ... Could it be that it wasn't ever really about bringing awareness to the population at large. But rather to their target demog...

We're a pretty tight-knit group. The IS community. We blog. We email. We post to forums. We chat on the phone. We friend each other on FB . And so on. Some of us have the very special opportunity to meet. And deliver an in-person hug that spreads from the IS changed spot in our souls right through to the squeeze of our arms. It is a very moving thing...let me tell you. Mike Bartenhagen is one of those IS friends I have had the privilege of meeting. He was the parent liaison on the FDA panel during the Vigabatrin hearing. I was the Epilepsy Foundation parent representative testifying before the panel. Jen Smith , advocate extraordinaire, was also in attendance. There to support both Mike and myself and to represent her son ,Austin, who achieved seizure freedom on Vigabatrin . For me...it will always be one of those memories. The kind you pull out on a rainy day to feel your heart warm. I'm posting below the email Mike sent to Alanna Peer (Development and Events Coordinator -...

Once upon a time... In a land far away... Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman ...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act. See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials. Suddenly the mommy...seizure saturated son in her arms...was...