November is Epilepsy Awareness Month

This November, as Meara continues her journey with Epilepsy with another brain surgery, we ask that you help. Whether it is donating to Meara's fundraising page or a non profit Epilespy Foundation, painting your nails purple or wearing purple, posting facts or discussing the facts with someone you know, it all makes a difference. Millions of people live with Epilepsy. 50,000 people a year die from Sudden Unexpected Death in Epilepsy (SUDEP). We need to fight the stigma and educate ourselves and our children about Epilepsy, a spectrum of neurological disorders, so people with Epilepsy can live a life free from the stigma that comes from misperception. I can't tell you how often I've heard references to seizures in a joking manner in movies or on tv or from a colleague or students in a classroom. People who have Epilepsy are just like you. In fact it could be you one day, 1 in 10 people will have a seizure in their lifetime and 1 in 26 will develop Epilepsy. Fight and hope for a cure, that's what we wish for everyday. Not only for Meara, but for everyone on this journey with Epilepsy.

- Written by Megan

Meara's Brave Journey Continues (fundraising page): https://www.giveforward.com/fundraiser/p4d3/mearasbravejourneycontinues

Exhaustion and Fleeting Thoughts

This is strictly Aaron speaking...pretty sure Megan doesn't want me to post this but I'm having a hard time faking it lately.

I'm just so tired of pretending that everything is okay.  I'm tired of always trying to find the meaning in all of this.

Can I say that sometimes there are things that just suck.  Is that a crime?

I'm tired.  I'm tired of the medical bills that arrive in the mail that we just can't pay and then fall deeper into debt over. 

I'm tired of not sleeping through the night because Meara needs us or if she happens not to come into our bedroom that it's because my worst nightmare has come true. 

I'm tired of having to make medical decisions that an average parent with average kids with no major medical issues don't have to make.

I'm tired of waking up every single day having to accept the fact that I won't hear my little brother's voice again.

I'm tired of giving my all to a profession every day that is absolutely completely obsessed with the most useless time consuming worthless devices for "reforming" or "fixing" the education system.  Let me spell it out for those in charge of bringing all of this uselessness to us: GIVE US THE TIME TO KNOW OUR STUDENTS.  It isn't rocket science.  If I have meaningful, let me say that again, meaningful (!) time with my students I will teach them effectively.  Teaching the individual child means having the time to learn who they are and for them to learn who you are.  You'd be surprised what can happen in learning when the environment is set up to be meaningful.  You don't fix the "achievement gap" by ignoring the human essence of the child.  They are humans.  Not a case study or a carbon copy of some ideal high achieving pretend student that everyone thinks will be the saving grace to our greedy capitalistic economy driven society.  Let teachers teach.  Let them spend time with their students in meaningful work that they (the teachers) decide will work for their students.  And for goodness sake, can we please stop using "achievement" as a marker for success?  I'm nationally board certified.  Do you think I feel like a complete success right now in life?  If you are reading this post then you know the answer to that question.

I'm tired.  I'm sure after a good night's rest I'll post something more inspirational or positive.  But even a good night's rest won't take all of this stuff away…

I'm not the inspiration or strong man that everyone makes me out to be.  I'm just someone who's trying to not fail every single day. 

I know it could be worse. 

Tides, depths, and navigating these seas...

I imagine (and hope) that there will be day when I can explain to Meara that I am sorry for the mistakes I've made as parent.  For all the times I've gotten frustrated with her for not paying attention or for not listening.  There is that deep divide.  The one that spells out the fact that she isn't sleeping at night and therefore has a tired brain during the day.  The fact that the medications she is on are designed to slow her brain down.  Then there is me…perfectly imperfect me.  The dad who loses it and makes demands of my daughter that should normally be made…"you need to be a better listener", "You need to be better behaved in the store"…you know, all of the things that we try to do in order to avoid looking like inept parents out in public.

I imagine (and hope) that there will be a day when I can sit down with Meara and apologize.  Apologize for all of the times that I let her down.  Apologize for all the times that I forgot that she has been through more than any child really deserves and that she continues on a daily basis to defy the odds.  That she is a warrior princess who has built this beautiful life from what seems to be sometimes…falling embers and scattered debris.  

She is our warrior princess.  I hope that there will be a day when I can sit with her across the table sharing coffee and explain to her that I love her more than words will ever be able to capture.  And that I'm sorry for all of the times that I got it wrong.  And to acknowledge the difficulty in this journey for all us.

She is our warrior princess…

Simple shades of things...and the complexity of it all.

Meara's been having quite a few seizures during awake hours now.  We might have shared that, can't remember honestly.  She is aware when they are coming and will typically bury her head into Megan's chest when she's having one.  She's having them in the car, in her chair at dinner time, and playing with Ainsley down in the family room.  

She's also been having so many during her sleep lately that she's been coming into our bedroom around 12:30am or so to sleep with us.  This has been going on for about a month or month and a half now…hard to keep track after awhile.  She's had five since I put her to sleep tonight which was an hour ago.

After Meara had one in the car with Megan last week she told her that she really wants to go the hospital to have her seizures taken away.  So, if that isn't affirmation that we are making the right decision for her…when then…not sure what is.

So, we are tired.  Been a busy cycle with her lately.  Seems like the seizures are taking over a bit.  We are almost a month away from her resection and it seems as though everything is telling us that we need to do this surgery. 

She's still got a lifetime ahead of her.  She's beautiful.  And challenging.  And lovely.  She draws every morning before school.  She's riding her bike without training wheels like a bat out of hell.  Our neighbor Matt always remarks how she rides her bike without any restraint.  Like she's got nothing to be afraid of.  Normally I'd be worried about the lack of restraint but then...

That's what I imagine for her…that she has nothing to be afraid of.  She's so energetic…and complex…and yet so simply…amazing at living in the moment.  I hope that her wonder, discovery, and difficulty in life is something that she'll hold onto.  That she'll live in a world full of imagination and magical territory.  I hope that she'll always dream and keep her sense of surprise and novelty close to her. I hope that her journey through epilepsy will be something that she doesn't see as a stigma but rather something that has given her a wisdom and understanding that will bring her shining stars against a dark night sky.  It might take her a lifetime to unpack…but she'll be stronger.  That is what I believe.

Surgery Date

Hi All,

We have a tentative surgery date of Wednesday, November 13.  Meara will be admitted that day and have resective surgery of her right frontal lobe.  It is one surgery (not like the two surgeries requiring grids last time) so she'll be moved to the ICU after surgery until she is stable enough to be moved to a room for recovery upstairs.  We should count on a week at least up there for physical therapy and for her head to start healing.  I imagine she'll be on the same big pain meds that she was on last time.  The morphine seemed to work the best.  I'll be taking a week and a half off from teaching and then I'll have the following week off for Thanksgiving break.  I'm hoping we'll be home by then but just in case at least Megan can count on me being off for two and a half weeks.  

Thank you for all of the positive thoughts and vibes mentioned to us in person, electronically, and felt in our hearts.  It makes a huge difference to focus on the good and have gratitude for what we have.  I think that Meara deserves the best Megan and I can deliver in terms of support and love.  It helps us remain strong for her when we have such a loving support system to help lift us up too.

She's been seizing a lot lately.  Just came off of a camping trip where I slept next to her in the camper and Megan and I noticed the seizures have increased a great deal.  She's also had several while awake which is not a common thing for her in the past.  Must be a sign that we are making the right decision to follow through with the surgery.

In the mighty words of the Milk Carton Kids…kinda says what this journey can be like most of the time:  "The road is winding and it's barely lit, you never know how far you're really gonna get.  But when you live here you just learn to get used to it."

So even though the road is barely lit and we don't know exactly what we will get, we will learn to get used to it…no matter what.  We hope, pray, and believe for seizure control.  No matter what happens Meara will be loved beyond measure and we will be there to embrace her and give her strength.  

Peace and love to everyone.  

Love, 

Aaron & Megan

Change of Plans: Surgery

We've been sitting on this update for awhile...to be exact, pretty much right before we learned of my brother's passing. I was going to post about this a whole lot sooner but Megan and I both needed time to process what we are about to share. Working through the loss of my brother was obviously a consideration as well.

So here goes: things have changed since our last post indicating our decision not to have another surgery for Meara. Back when we said no it was in response to the epileptology team saying that she would lose her entire motor strip that is responsible for her left side.  This is referred to as a complete hemispherectomy. 

A couple of weeks after we made the decision, informed her doctors, and updated the blog we received a call from Meara's neurologist with "good news". "Good news" meaning that her case went on to full conference (neurologists, neuro-radiologists, neurosurgeons, neuropsychologist, etc.) and they determined from the spect scans that they would only need to remove part of her frontal lobe with a strong chance of avoiding the motor strip. She would lose supplemental motor in her leg but that would come back - possibly in just a week or perhaps longer. But it would come back. 

So, we had our round table appointments with the neurosurgeon, physical therapists, and neurologists (during the month of July).  These appointments are part of the preparation for an anticipated surgery.  We asked a list of questions and I hastily typed the answers into notepad on my phone. The following is captured from those notes:

Q. What deficits do you anticipate? Transient weakness of foot and leg.

Loss of visual/spatial - reading maps, etc. Can be rewired because bilateral. 

Q. Would you take out out more of the area (equaling greater deficits) once you went in? Would try not to.

Q. How confident are you that this would provide control? 60% chance of seizure control.

Q. Would this resection activate another area? It could. 40% chance that it would not provide control and activate another area.

Q. Are her current seizures a result/consequence of cortical diplasia? Yes

Q. Should we try medical marijuana? We cannot recommend because of the absence of clinical trials. Too risky, not sure of long term side effects.

Q. How long can we wait to make the decision? No rush to make the decision.

Q. How long of a hospital stay? One week anticipated

Q. Therapy in home/out of home/ in school? Depends on outcome of surgery.

Q. Would she need a wheelchair? At first, yes. Supplemental motor area will affect both legs. It is transient loss meaning the motor function will come back.  Weakness will be temporary. Sometimes a week to get back, sometimes longer.

• Resection area affects visual/spatial, but bilateral. Will not affect memory - that's temporal.
• 10% chance that they could inadvertently cause damage to the part of the brain that they are trying to preserve (motor strip for entire left side of body).
• The tricky part for the neurosurgeon is working around/within the scar tissue from the previous resection.   He wouldn't have to remove as much of the derm this time around.

We also met with the neuropsychologist on July 31 and she did a complete assessment of Meara's development in preparation for an anticipated resective surgery.  She provided us six pages of in-depth, extremely comprehensive notes about her development but in a nutshell here are the major take aways:

• Her developmental progress is lower than before.  This is a direct consequence of the seizures and the medications that she is on.  Anti-seizure medications are designed to "slow" the brain down and as a result her brain is not being allowed to be as active as say one of her peers.  Essentially it is keeping her from staying on track and keeping up with expected learning benchmarks. The take away is that if the seizures aren't controlled, or even if they are controlled and she has to remain on medication her entire life, that she will have learning challenges in school and that her development will not follow the same track as her peers.  

• Meara has what is called visual field defect.  We expected this since the area of the brain they resected last August is the area responsible for this function.  Basically, her range of vision is limited on her left side.  So when she looks at a book she won't see some of the left side compared to being able to see all of the right.  She can turn her head to compensate but when it comes to reading she'll need to be trained/reminded to turn her head and start on the left.  It won't come naturally.  Also, she'll have to be taught to be extra aware in P.E. class - for example, when a ball is being thrown towards her, etc.  It could affect her ability to drive (maybe not depending on the severity of her defect) but as of right now she won't be allowed to drive due to uncontrolled seizures.

To say that we've been under some stress is kind of an understatement. If you are to ask if we are handling it well...it depends on the day. Megan is doing a better job than me. She's the one with the quiet strength and the ability to stay even. Thank goodness she's co-piloting this family with me. I'm feeling quite emotional at times but trying to stay grateful. Riding the bike as much as I can to keep the stress as far away from my body as possible. The biggest thing is...we don't want to screw this up. The teacher in me wants Meara to thrive and be successful in school.  The Dad in me is just grateful that she is alive and happy.  The key is trying to determine what course of action will give her the best quality of life from the choices of treatment that we have available to us.

A big change for us is that as of July 1st my school district revised our health insurance plan from co-pays to coinsurance. It is a significant change and we will meet our family out of pocket maximum with this surgery. The out of pocket maximum is a significant amount and it will have a much larger impact compared to the last surgery. This won't affect our decision because we are determined to seek the most effective treatment for Meara in spite of cost. I mention it because separate from the decision of having the surgery it adds another element of stress after the surgery is completed.

Megan and I have decided to go forward with a second resective surgery for Meara.  This was not an easy decision and has taken us almost two months to figure out.  The development information from the neuropsychologist was what tipped us in the direction of surgery.

From surgery we could gain seizure control and Meara could lose very little for it. Or, we could not gain control and she would hopefully still lose little. 

We wil be calling tomorrow to schedule the surgery.  We'll update the blog when we have some definite dates.  

Love to every single one of you. Still trying to stay positive. Generally speaking we are. But also being honest that the level of stress that comes with being a mom or dad in this situation is nothing that we could possibly ever be prepared for. So one day at a time I suppose.  And faith that we are making the right decision for Meara...

Love,

Aaron and Megan

Spect Scan Results

We met with Meara's neurologist on Wednesday to discuss the results of the spect scans that were completed while Meara was in the hospital last week.  She said that the spect scan was a good one and provided the information they needed.  The area of the brain that is still affected by the seizures is where her motor strip is.  The team of epileptologists determined that if that part of the brain was removed by resection (a second surgery) that she would lose her entire motor function on the left side.  Meaning shoulder, arm, face, leg, and hand.  The hand would be permanently paralyzed.  The other areas could see improved function from years of physical therapy but she would always walk/run with a gait no matter what.  She would also permanently lose her peripheral vision.

The success rate for this surgery is the same as last time: 60-70% chance of seizure control.

If we do the surgery we instantly paralyze her on one side.  If we don't do the surgery over time the seizures could cause damage to that part of the brain and cause weakness on that side of the body and motor function anyway.  

The "formal" conference of her case (involving epileptologists, neurosurgery, etc.) takes place next week but they are likely to come to the same conclusion as the team of epileptologists.  

Megan and I have decided that we aren't going to put Meara through a second surgery.  At this point her present quality of life versus the deficits that she would incur don't add up to having this surgery. 

The "concrete" doesn't get poured on her brain until about ten years old.  That means if we can somehow find a way to control her seizures before she turns ten then we can have some confidence that her quality of life will continue as it is.  Maybe from a new med, maybe from a new treatment that hasn't yet been found. 

I asked Meara's neurologist if she would have the surgery done if it were her own kids and she said no.  She said that watching Meara be so active signals that it isn't the time to be making that decision based on the type of seizures and her current quality of life.  She said that we should keep exploring other options and think of a second surgery as a last resort if her quality of life diminishes at some point and the surgery proves to improve quality of life versus taking away from it.

We believe that one day Meara will be seizure free.  We believe that she is perfect and that everything happens for a reason.  We also believe that through supporting one another and building community we can provide a better quality of life not only to each individual child who is diagnosed with epilepsy but also for the parents and family members who care and love their child and just want what any parent wants: a happy child who will live a long and fulfilled life.  What we've learned is that every child is different and every parent has to make decisions based on their child's specific needs when it comes to controlling the seizures and improving quality of life. We have such a deep respect and love for these families and we are humbled by their courage to make the right decisions for their child.

Thank you for supporting us through all of this.  Megan and I are so grateful for the prayers, positive thoughts, messages, and affirmation that you have sent our way.

Love,

Aaron & Megan