Patient Blaming

May of us cringe when we hear “victim blaming.” It happens often to make us feel better. somehow we are able to convince ourselves that that horrid crime, often domestic violence or assault happened because of what the victim was doing. Somehow this can make people feel safer, like it can’t happen to them. I never quite understood.

This week I have been thinking that “patient blaming” is just as real. It can come from a doctor, a family member, an acquaintance or even a friend. In my estimation “patient blaming” has decimated my spirit more times than I can count.

We saw a doctor on July 1 for the AVM in Meghan’s thigh. She was supposed to be “the best,” a term I know is used too loosely. She is a hematologist who many years ago prescribed an off label drug that quieted the AVM in Meghan’s knee for a good stretch of time. There was a GI bleed that hospitalized her about 8 months after. Maybe it was the drug. Maybe it wasn’t. We can’t seem to keep a doctor on the team long enough to have a long term understanding. However, it definitely worked to quiet the AVM because almost 6 months to the calendar after the medication was stopped, the AVM had a bleed of it’s own and left us with Thanksgiving week surgery.

This doctor knew we were coming to seek another drug being used off label for AVMs in our population. She took basic information via MyChart and seemed eager to help. We got the scan. We saw her. She spent a good hunk of time analyzing and criticizing Meghan’s regimen of prescriptions and vitamins. I asked her which ones she would cut. She had no answer, but used that medication list to tell us that there was no way Meghan could take the drug we sought.

I told her that in the absence of a solid multidisciplinary team I took us through every highway and backstreet alley in this city to get my kid functional. I worked with many doctors and put together a combination of prescriptions and vitamins that had allowed my kid to complete school with a full college scholarship, and be an athlete and community leader. She was unaffected. And, she told us that Meghan would not be a drug candidate prior to reviewing the MRI/MRA as she “does not read scans” and the report from our AM visit was not up that PM. She also made sure to tell us rare disease patients are “a lot of work.”

That evening she sent a message with articles cited for PTEN screening. NOTHING more.

But the report came up on 7/2, and I viewed it alongside the images. And I still want to talk to someone about the drug. I sent her a message on 7/3- no reply. NOTHING.

Ten days passed and I did this…

This morning we had this exchange

Now, I had to maintain my manners, but I just about lost it. “I just sent generic guidelines???”

And WHAT exactly would you suggest we do next? How are you feeling about the report. What does it say to you?

I waited weeks for that appointment. I timed it right after school ended for the year. And again, a waste of time.

Time after time this scenario plays out.

I have lost count of the number of doctors we have seen that have come with promises of being “the best.” I have scheduled, and rescheduled. I have driven hours. I have spent ridiculous sums of money on tolls and parking. I would do it all a million times, but sometimes the feeling you are in the hamster wheel is all you have.

There is no one who knows me who would consciously say I have been anything less than a mouthy and stellar advocate for my girl.

Yet, inevitably this is where the “patient blaming” finds it’s way across the lips, of the doctors who can’t help, of those I love, and those I just tolerate.

“Why are you on all those medications?”

“Does it really hurt ALL the time?”

“Well, did you try doctor ____ in _____? They are THE BEST.”

“I took my child to _____ and that is the only person I would ever trust.”

“Everyone has pain.”

“You asked THEM? WHY?”

“What did you do differently today?”

Sometimes it is subtle. Sometimes people don’t even realize it. Other times, I’m not as sure.

Do people realize we are all doing the best we can?

Do they realize we have jobs? And insurance restrictions? And children who NEED for their mental health to have LIVES that do not FULLY revolve around waiting for doctors who MAY care enough…??

Do they realize even when we call, after HOURS on the phone, sorting out all of the above, that it may be MONTHS before our jobs, which allow for the insurance to pay for these exams can free us? Because there is NEVER EVER one issue at a time.

We are all juggling spears. All the time. There is no rest.

We are 11 appointments in over the last 2 weeks. We are far from through with the summer cram.

There is no place in my world for patient blaming. There is no place for parent/ caretaker blaming.

We in the Rare Disease Community must build each other up. And know when to speak.

  • Is it true?
  • Is it necessary or helpful?
  • Is it kind?

And as Grandma used to say, maybe if it isn’t we should just keep still.

My whole heart and soul is with a Cowden’s sister across the globe. The desire to wrap my arms around her in a giant hug is so strong. She has done all she could for her daughter. And despite all that, it may just not be enough.

Sometimes there is no one to blame. Sometimes it is scary. Sometimes it is close to your heart.

Lead with love.

If we don’t help each other – no one will.

So, we pray. We research. We learn. We rest. We pray. We seek balance.

We remain #beatingcowdens

The Medical Bell Curve – Where do you fall?

Our healthcare system is broken. It is so desperately broken that I am not sure it can be repaired. But, I truly hope we are somewhere grooming a generation who will try. It is broken in so many different ways, but in the way we know best in this house, it is hanging by a very frayed and thin thread. And, truth be told, so are we. The question we ponder is what are we holding on to?

We have created sections, and subsections of care. I avoid the term “specialty” deliberately. We have crammed the status quo down the throats of exhausted and overworked doctors who are frequently jaded about their career choice before they have had the opportunity to size up the gargantuan pile of student loans they, or their credit, may never recover from.

Their jobs, at major hospitals have them double and triple booked for meager insurance payments. They are pushed to see more patients, and to do so faster. There is not time for inquiry, or for research for a particular patient. They are taught, “when you hear hoofbeats think horses, not zebras.”

And I get it – to a very minor extent. When I was in college I learned all about the bell curve, and how the vast percentage of the population, 68% fall within one standard deviation of the mean, or average. Which means the study of “normal” medicine answers whatever questions 2/3 of the population have.

If you take it a little further, by contending with some “odd” presentations, you have covered about 95% of the population by the second standard deviation, the bell part of the curve.

While this did not come off of a statistics site, you get the point.

What if you have a zebra? What if you are rare?? What if it is a way of life for you? Then what? Or what if you land in “mythical” and you have yourself a “rainbow unicorn zebra?” Do you want to know what happens then? “Medical Professionals” are so uncomfortable because you exist that they try to make you go away.

We live in a big city. We have always lived here. We have been dealing with my own medical challenges long before we knew of “Cowden Syndrome.” My girl came into the world a medical anomaly and little has changed. Except the unrelenting quest for answers brought us to a diagnosis of PTEN Hamartoma Tumor Syndrome, and hypermobile Ehlers Danlos Syndrome, and a Mannose Binding Lechtin deficiency, and and AVM in the knee, that on it’s own accounted for 7 surgical procedures, and one in the thigh, and a VM in each palm, and a lumpy thyroid that needed to be removed, and the same for the tonsils…. and…. and….

So, it’s summer. And while others are complaining about their jobs, we are doing ours. We are checking in with countless specialists as Cowden’s is a syndrome of constant monitoring. It is our job to catch cancer before it catches us. There are games I prefer. But, this is ours.

Over the years we have sought counsel from the most prominent, and the most “off the beaten path” doctors we could find in this city. And as my confidence grew I checked them. I checked their credibility. I learned more chemistry and biology than my 9th and 10th grade teachers could have imagined possible. I listened, I tried, I added and subtracted. And there grew a complex combination of prescriptions, vitamins, and compounded off label medications that make up a daily regimen in this house.

Do I have proof? No more than they do.

Monday and Tuesday we saw two of the best this state has to offer. One is a pediatric endocrinologist who looks at my child as a WHOLE PERSON. The other is an orthopedist who has seen her at her best and worst, and genuinely takes pleasure at helping her reach new heights.

Today. Let’s just say today I could have done without.

As a newly diagnosed PTEN patient Meghan was sent to a “specialist” who knew more of this disease. She was the one many of the others in our circle, (HUGE CITY, SMALL CIRCLE) referred us to as the guru. At the time she prescribed a medication that seemed to do a lot to slow the AVM under the meniscus of Meghan’s right knee. For a good stretch of time there was a respite from the vascular embolizations. We were on a good track. Then, there was that time she ended up in the hospital with a severe gastric reaction. It was assumed that reaction was from Celebrex, the drug with the off label properties that seemed to be slowing the progress of the AVM. Her esophagus was raw, and whether it was to blame or not, it was the likely culprit. I was cautioned we’d know within 6 months if it had been working.

Almost 6 months to the calendar there was a bleed in her knee that caused an emergency surgery. It was the AVM. And that time, enough blood sat there long enough to complicate a few more things. Had we been “Robbing Peter to pay Paul?” we would never know. The Celebrex left our life and knee surgeries resumed.

Hypermobile Ehlers-Danlos, undoubtedly an issue since birth, made nothing easier. The pain of constant subluxations was taking its toll. We added what we could to provide some relief.

Ella, the service dog joined us finally in January after a 3.5 year wait. Ella provides her own medicine.

But a few weeks back I thought, let’s revisit this PTEN “specialist” from yesteryear to see if she could offer advice on an off label treatment for the newest AVM in the upper right thigh, dancing with the sciatic nerve, too deep to remove, deep enough that the effectiveness of additional embolizations are questionable.

Her office insisted on new scans, and MRI/MRA with contrast prior to the visit. We had to schedule them both the same day as the office visit so we could discuss the new scans.

So, for the third time in 4 days we left for an all day medical journey. We left at 9:15, started the scans by 11, finished by 12:15 and waited till 12:45 for the CD which, even though they told me I didn’t need, experience has taught me that, yes. I do.

This was the first time, after well over 40 MRIs that Meghan was in the room alone. Ella was mine to care for in the waiting room. Mixed emotions everywhere.

The pouring afternoon rain showers seemed to add to the gravity of the day.

Having not seen this doctor since 2014, we caught her up on the surgeries since then. She is new to the facility we were at, although not new to the field. She immediately began to question well researched decisions made by a doctor who left the facility last year. The hairs on my neck began to stand.

She knew we were there about the AVM in the thigh, and we were looking forward to hearing her take on the scans. Imagine our shock to learn the images mean nothing to her, and we were waiting for a report that was not destined to arrive that day.

She reviewed the medication list and openly criticized it. But, she would not speak to what she thought was excessive. In a few sentences she managed to demean and demoralize. We asked about medications for AVM, and she mentioned one we are well read on. But, she then dismissed it because Meghan will be at college next year. “It is hard to monitor. I don’t monitor it. There is another doctor who does it. And I don’t know if you’ll be able to do it remotely, or if you can even get the blood work in Pennsylvania. Plus, we don’t even know it works.”

We asked again about the Celebrex, but she was reluctant to try it again.

At which point Meghan, who had been so quiet, let the doctor know she was instilling zero confidence with her list of “maybe,” “possibly,” and “probably not.” Meghan was accused of seeking pain medication. Which she was CLEARLY not. Trust me. This kid values above all things having her wits sharp.

I expressed our frustration with the carousel, or rather the teacups is a more accurate description of this ENDLESS ride. As she began to mention more doctors I shuddered. I asked her if she understood the physical, mental and emotional toll on the patient. I asked her if she understood by the time we leave appointments like this we are unable to accomplish much. Hours in traffic and the emotional turmoil of more questions than answers, we are exhausted.

She felt compelled to remind me that the process is slow, and I must be patient.

Again, I am not in a small town.

I am in a huge city. With great insurance. Which is useless because I can’t seem to get much covered anywhere but here. And who wants to see us anyway?

She made sure to remind me the hardship it is to take on Rare Disease patients. She reminded me about the paperwork. Yep, I know.

I reminded her that I have pretty much lost track of all casual contacts trying to keep my head above water.

Either she didn’t understand, or she didn’t care. She was too busy telling us Meghan is a success BECAUSE of doctors like her. I guess, technically she’s not wrong. Meghan is a success and will continue to be her best self because she knows she wants to DO BETTER and to BE BETTER, for all the Zebras, and the “regular” people too. So yes, she is a success, not because of those like this doctor, but in SPITE of them.

I’ll mail the CD to the ortho. In case we have something we have to do. In the mean time I will continue to teach and empower Meghan to manage her care as best she can. She is amazing. She never stays down long.

What are you doing this summer?

We will be here…

#beatingcowdens

Beating Cowdens – Ten Years 250K Hits, and Counting

Spoiler Alert- Rare Disease DOES change you

I watch the traffic counter on our blog click real close to 250,000. A quarter of a million hits on little excerpts of this messy road. It blows my mind actually. I may never understand why people read. But, I do know why I write.

Ten years ago someone nudged me to tell our story. I told them there was no story to tell. Except in reality there was. My undiagnosed kid, my medical mystery, had gotten her diagnosis at the age of 8. The pieces started to make sense. And, my diagnosis followed later, connecting more dots, and solving some long standing questions.

So in May of 2012 I jumped in with both feet. I typed. I hit publish. And I never looked back.

Through the years people questioned whether it was wise to tell Meghan’s story before she was old enough to tell it herself. They didn’t realize she was telling it; hosting fundraisers, speaking at events, and even being honored as a 2016 NYS Woman of Achievement. She has also always said she would do it all again if it could help this complex diagnosis make sense to one person, to one family. If it could give someone hearing “PTEN Hamartoma Tumor Syndrome” or “Cowden Syndrome” for the first time, an image of people living with it, living through it, and doing their best to make life happen, then it was worth it.

Because really, at the end of the day, what we all need is hope. Well, hope and one or two rock solid internet support groups.

When we were first diagnosed Meghan’s therapist liked to tell her not to let Cowden Syndrome “define” her. She had an active Arteriovenous Malformation creating havoc in her knee. He had her draw a smiley face on the knee to imagine the pain was gone. He didn’t last long after that.

The truth is, that between us there have been over 30 surgical procedures since 2003. The smiley face on the skin, well, it doesn’t help.

What helps is determination, faith, tenacity, prayer, and support. Because being friends with people who are always in the operating room, or in the middle of surgical recovery, or medical drama, is exhausting. It seems they are always talking about something medical. It seems they are self-absorbed.

People say “don’t let it define you” because it makes them feel better. Maybe a more appropriate sentiment is to be cognizant of how it changes you. Because if you are just starting your journey I can guarantee you one thing. It will change you.

I mean a decade changes all of us, right?

The thing is when you are in the middle of the ocean, trying to avoid the sharks, it’s so hard to focus on anything other than swimming for your life.

Everyone has their own lives though. Everyone has their own crises. Everyone has their own problems. Yours seem constant. They are hard to keep a handle on and they can drive away even those with the purest of intentions.

I used to have hobbies. I don’t really exactly remember what I used to do. But I am sure I did.

I used to go places. With people. For fun.

But, now I often survive. And most days that is plenty.

There may be time to figure out those hobbies again, or to reconnect with those people. The 8 year old is turning 18 and is off to college in a few short months. Life keeps moving.

So 10 years into this blog, what are my take aways for a new family reading?

It will change you. Check yourself.

Enduring life with a rare disease can make you:

Angry or kind

Miserable or compassionate

Self- absorbed or philanthropic

Question God, or praise Him

Isolated or connected

Overwhelmed or focused

Complacent or driven

At some times in the last decade I have seen each of the above in me. I never made the decision to bring Cowden’s Syndrome into our lives. It did change us both.

Last week Meghan mailed out Thank You notes to people along her educational journey, from her elementary school paraprofessional to her high school principal. These people changed her for the better. She, from a life of medical struggles has learned that kindness matters. We say, “No kind word is ever wasted.”

Today Meghan left a training session at a local gym to tell me her trainer has a child with vascular malformations like the one in her knee. She gave him the number of our genetecist.

We learn to use the situations we are in to push the limits of what we are able to do. We hold our faith close.

Our identity as rare disease patients is tightly interwoven into the fabric of who we are and who we continue to become. But, even within the diagnosis there are choices. We can not control what happens to us. We can only control what reaction we have.

As a dear friend once told me, “When God closes a door, praise Him in the hallway.”

We remain #beatingcowdens

Two Valium and a Swig of Wine-because sometimes deep breaths are just not enough.

It has been that kind of a week month YEAR. Life continues to happen at a pace that has me barely keeping my head above water. I often feel like it’s a dance around the land mines. All day. Every day. Mostly I make it.

Tuesday I went to a high end NYC orthopedic hospital to continue the journey to diagnose the foot injury from hell. I taught my 27 fully remote 4th graders until 11:30 and took the afternoon off. I traveled in for my diagnostic nerve block. If this nerve block eliminated my foot pain for 6 hours, we would be closer to eliminating it forever. At least in theory. (Spoiler alert- NOPE, that wasn’t it.)

I arrived home from the procedure at 3:20 with instructions to log my pain hourly until 8:30. I was also to walk several miles during that window.

Except, April, our sweet as anything oldest girl hadn’t been feeling too good in the morning. Food had been tough for a few days, but normally I could cajole it into her. Not so much that morning. So, I wasn’t messing around and I opened a can of chicken salad from Costco. The smell would have had her jumping in place. Except I had to bring it to her. She took a bite or two and turned away.

I called the vet, pleased that our favorite was on call. The description of “distended abdomen” prompted “bring her in now.” He knew April well as he had set us up for her surgery just this past March. I paced the parking lot in between his calls.

“I’m worried. Her belly is hard. I am afraid it’s a tumor, but I want to be sure.”

“Yes, you can take x-rays.”

More steps on a foot that was anything BUT numb.

“It’s not good news. I see a large mass, possibly connected to her spleen that seems to have burst. Her abdomen is full of fluid. There is not much we can do except keep her comfortable.”

My head. My heart. My April.

April was the MOST GENTLE girl.

Two hours later she passed peacefully in my arms.

I collected her leash and collar, and whatever resolve I could muster.

That was fast. They all hurt. This one had hurt coupled right alongside shock.

April, my girl. She was by my side during my foot injury and in my 4th grade “classroom” every day this year. April, who saved Lucky who unraveled after the sudden loss of her companion Allie a few years back. April who took to Jax immediately. April who joined us through a bizarre adoption on a January Tuesday in 2015, had quickly left on a May Tuesday in 2021.

I was home barely long enough to put her leash down before I had my sneakers on to torture myself through the approved number of steps to complete the failing foot experiment. No time to pause. Game face.

I asked why it feels like we are living life on the Indy 500. No one had a straight answer. Clearly we are traveling above all posted speed limits with poor safety restraints.

Cowden’s has been largely minding it’s business for now, and after some sloppy surveillance, with covid seeming to be in retreat, we are getting caught up with regular screening.

And, with every appointment comes the question of how they will monitor Meghan while she is in college. We are trying to make real plans to stay on top of things, because Cowdens doesn’t take vacations. I believe it takes naps. But, not extended vacations. And college. Yep. Sneaking right up on us.

The psoriasis in my ears isn’t linked to Cowden’s. I don’t think. But it does add some more doctors to a very full plan. Plus, it’s itchy. And gross. BLAH!

Senior year? Nah. Not really.

Meghan will be confirmed in the ELCA Church in Plainview where my brother-in-law is the minister this coming Sunday. That is a happy day, a long time coming.

They promise me graduation will be some time late June. I’ll take it as it comes.

For now, the usually low maintenance medical one in our house is looking at oral surgery for a raging infection in his mouth. This following 5 days inpatient with Covid in March and he’s becoming a contender for appointments of his own.

“I’ve tried to take things one day at a time, but lately several days have attacked me at once!” was a sign that hung in my parents house for many meaningful years.

This year has been unlike any other with its own set of unique challenges. Yet, I don’t remember the last time it was “calm.” You probably don’t either.

Today I finished school on time. I am set up for Monday. I haven’t had many weekends this year. Usually during a school year this feeling of being settled in comes around Halloween. We’ve got 5 weeks left.

Today I went to the cemetery to clean up my Dad’s grave. It needed a little TLC. I swung by my grandparents at another cemetery and thought about how much I miss them all. Time keeps moving.

Joy. Sadness. Laughter. Pain. Chaos. WIns and Losses.

Ferris Beuller’s Day Off 1986

And that my friends, is a little tiny, carefully edited piece of how the title came to be what it was.

Hang in there, all of you.

We’ll be here

#beatingcowdens

We also have wine. In case you come by!

Exhale…

Meghan and Ella have been settling in so well together.  Jax and Ella are fast friends.  April and Ella will be polite acquaintances.  Ella is playing, running, eating, and sleeping.  She is adjusting to life in our home and seems to be enjoying it.

The most prominent lingering fear surrounded the lump on her side.

We gathered the notes from the vet in Indiana.  We put all her paperwork together.  The entire Ortega kennel had vet appointments today.  So, we headed out for the first time as a party of 6- 18 legs, and 3 tails.

Our veterinarian is thorough.  He has treated our dogs well.  April needed some lab work for a persistent problem we’re working on.  Jax needed to be caught up with some shots.  And, Ella, well, that pretty girl needed to get started in her next phase of life.

The vet took her in and did a complete exam.  He read the sparse notes we carried with us from Indiana.  He looked at the photos of the lump on her side.

He called to tell us that we should start her vaccinations, as he could only verify rabies.  He told us he did a heartworm test that was negative for heartworms.  He drew blood.  That “should be nothing” later this week.

And, since in these Covid times, all news comes via phone from outside the vet’s office, the three of us sat quietly while we waited.

“And the lump?”

“It’s her rib.”

Collective exhaling throughout the car…

“Her RIB?”

“Yes, if you trace along the bone it’ll take you to her spine.  Most people never feel it.  Ella is very lean.”

Fist pumping and smiling took place for a few minutes.

We live in a worst-case scenario existence.  It is so rare that it goes well.  And, yet, today, was a win.

Nerves shot for no reason. I have no idea what happened in that office, or why the vet said hernia 750 miles ago.  But this is a win.  I’ll take it all day every day.

It looks like the rest of life really does start now.

Meghan and Ella… onward.

#beatingcowdens

Puppy Steps

It was a walk. Outside. On the long lead. And it went really well. Not perfect, but so very much better. The distractions are still a little disconcerting, but her focus and response to Meghan is improving all the time.

I am bothered that she doesn’t use the elevator, a problem compounded by our 4th floor room, Meghan’s nine knee surgeries and my very painful, swollen foot. And yet, I am super pleased that she trained today on the floor near the elevators, a floor she wouldn’t walk on days ago.

Her sporadic barking is a bit troublesome. Her trainers have told us it is the hotel, and noises we can’t even hear. I don’t love it, but they’ve been right on so many things this week. This week has been a huge learning experience. Yet another time in life where nothing is quite as you planned or expected, but there is a cautious optimism in the air.

I really expected when we got here that this Ella girl would hop right into bed with Meghan, and wake her up on cue the next morning. I did. I figured the leash would hand off and she’d be ready to do all the things Meghan needed. I expected she’d potty on command, and quietly tuck into small spaces. And I was upset when it didn’t go down that way at all. From learning to walk in sync, to finding the right spots for her to pee, it has been a labor.

I know lots of things. But sometimes it’s hard to accept that I don’t know ALL the things. Preconceived notions can be the undoing of many of us, and I am no exception. I did not realize at all that “Team Training” would mean that the dog and Meghan would be learning everything together. It actually makes sense. Ella is not a machine. Dogs don’t fit into “boxes” anymore than people do. Ella learned to work with Eva, and with Michele. Now, she needs to learn to work with Meghan.

Every time we have changed jobs, or bosses, we have taken with us the skills and work ethic, but had to tweak the way we performed. As the week has gone on it’s become evident that Ella was extremely well trained. She also works hard for really good food. As Meghan and she get to know each other, Ella has begun to transfer her learned behaviors and execute them with Meghan.

I was not totally sold on positive reinforcement training. I mean, I guess I used it to raise my kid, but certainly not with cheese and hot dogs! However, I have watched it work this week. And while I have no desire to train my otherwise happy pets like this, I see it’s value.


Tomorrow they practice, and Meghan gets to ask the rest of the questions. Well, the ones she has thought of already… I do hope they are prepared!

Tuesday she takes her public access test and we get on the road with our “plus one” for the 750 miles back to New York. This team has a lot going for them. Ella makes my girl laugh. The way the dog looks at her warms my soul. It’s like Ella understands she’s got someone really special in Meghan, and Meghan feels the same about Ella.


There are things that aren’t ready yet. We know there are no promises in life. We know it all too well. We are preparing to end the “Team Training” with tons of answers, lots of unknowns, and a giant pile of HOPE. I guess that’s about the best any of us can ask for!

Keep these two in your thoughts as they make “Puppy Steps” forward.

#beatingcowdens

Easy is for Amateurs

I knew it wasn’t going to be easy. I did. I just didn’t realize it was going to be THIS hard. I mean, maybe I should have. Easy is for amateurs after all. But, I didn’t realize it. And as a direct result I am just coming back to life after a week of anticipation, frustration, exasperation, disappointment and despair, because finally we have settled into HOPE.

There are so many things that are not quite as we expected. Some, because we did not ask the right questions, and some because the questions could not have been anticipated until we arrived. Yet other things were not as we expected because so much time lapsed from contract to “Team Training” that some of the things we were seeking most seemed to have gotten lost in translation.

The trip, all 11 hours and 750 miles was nothing short of exhausting. We ended it with a stop at Whole Foods before parking in the ice covered hotel parking lot. We promptly found someone to help, and paid a generous tip to have our car emptied to our 4th floor room while we waited out of the way of the black ice and the unwelcoming bite in the Indiana air.

We had a hard time resting that night, thinking of the union over three years in the making, that was finally only hours away.

When we arrived at Medical Mutts there was a warm welcome from Eva, and there was Marvin, the friendliest cat I’ve ever met to sit with us through paperwork. Michele, Ella’s primary trainer, came with Ella, and while there was excitement, there was hesitation throughout the room. There were no “fireworks” and no “Here Comes the Sun” playing, as I had anticipated so many different times before. There were casual greetings, and obvious work from everyone, human and canine, to try to figure each other out.

That is the part you don’t think about before hand. Or maybe you do think about it. But, then there is the difference between thinking about it, knowing it, and experiencing it. Ella is not a computer to be programmed. She is a dog. And for all the reasons we love dogs, she is a dog. She is also a highly intelligent, and extremely well trained dog. The former, her intelligence and even her ability to be trained are innate. Her training though was very much a labor of love.

Medical Mutts saw promise in this girl, a stray from the streets of Tennessee. They took her in from the rescue that had taken her off those streets. They brought her to Indiana and loved her. They worked with this beautiful girl knowing that she would one day become someone’s partner for life, and give them just the independence they were so desperately seeking. It is the whole reason this facility, these people, were Meghan’s focus years prior. The beauty of taking the unloved and abandoned and giving them value and purpose, that is the real reason we ended up here, at THIS facility.

I guess I just hoped, that it would be easier. But, easy is for amateurs.

Ella’s primary trainer was Michele, a well-spoken, professional and knowledgeable woman. When she first greeted us I found her a bit aloof. In less than two hours I realized she had put a good deal of energy into Ella and was protecting her best interests. She was trying to figure out if Meghan was going to give Ella the life she deserves. In less than two hours those two understood each other and I watched aloof become focused and driven to ensure she transferred all her knowledge of Ella to Meghan.  I watched she and Meghan connect, like minded in many ways, and both were keen on making this union successful.

They worked Monday and the progress was spotty. Ella came with us to the hotel that night and all of us were in for an adjustment. We expected a dog who would hop on the bed and cuddle. But, Ella wasn’t accustomed to touch. My mind was a little blown, as we had sought this dog largely to sleep with Meghan, soothe her through nightmares, and wake her in the morning.

Tuesday they met again, and worked on some behaviors. My mind traveled from confused, to furious as I silently boiled at the thought we had waited this long for a dog that lacked what we had asked for in the first place. Further, she was distracted and needed seemingly constant redirects. When we entered the mall and both trainers seemed stunned at what they saw, I actually took a walk to choke on my tears. How after all this time could this be what was happening?

When I had originally looked at the schedule I was irritated that we had an off day Wednesday. I needed to go back to my life. What was this “off day?”

And then it was Wednesday. And I understood. It was a huge pivot in the journey. Meghan and Ella had some fun time. Ella stayed on the bed, and even let Meghan touch her. Ella played. She rested. Meghan got some confidence. They began to connect. It was so much slower than I had planned in my mind, but so few things ever go according to plan, I knew that often the best things came out of the detours.

There hasn’t been a day that we have not felt the full gamut of emotions. We’ve laughed and cried and screamed and yelled. We’ve giggled and cheered. We’ve passed out from exhaustion.

This morning Meghan and Ella had successful outings to CVS and Barnes and Noble. And I mean, really successful. They did the best team work I have seen so far. We came back to the hotel to playful “zoomies” and another training session with Michele.

And then tonight there was exasperation on a trip outside.

The pendulum is relentless. But every swing seems to leave them closer to being a functional pair. Ella is asking for contact. Meghan is reinforcing at rates that keep her interested and focused. They are growing together.

The weekend is for resting, playing and some informal sessions. Monday we brush up. Tuesday they take their public access test before we begin the journey home.

Tuesday is not the end, but another beginning. There will be so many beginnings in this journey. And maybe that’s the point.

Nothing in Meghan’s life has been as we planned. And not much has been easy or smooth. Yet every single step has brought us to places we’d never imagined possible.

Easy is for amateurs.

Meghan and Ella you’ve got this!  Let the journey continue.

#beatingcowdens

Meghan Needs Your Opinion

Below is the essay my daughter Meghan wrote and is planning to submit with her college applications this week. She is planning to pursue a career in the medical field. She wants to “do better.” Please after reading, click the title you think best suits her essay. We appreciate your help and support for #beatingcowdens.

There is a blaring white light. I feel someone holding me down. A needle pierces my feeble skin. A wail escapes my mouth. I let out a plea. I sob as I writhe on the table. I cry out and beg for the extraction of the needle protruding through my neck. My response garners two more needles. The despair is overwhelming. Dread encompasses me. Then, it all goes black.

That is it. That is all I can recall from November 2, 2011, when I was finally forced to confront the challenges of my new life. 

At the ripe age of fifteen months, I underwent my first trip to the foreboding operating room, a place that would soon become as familiar to me as my mother’s smile. Being under the knife, in those bleak rooms where the sterile surgical tools sing in bitter harmony, is all I know. 

Life became a whirlwind of many operating room doors, many tearful goodbyes, many nights of my parents patrolling my hospital rooms, and no answers. 

Seven surgeries, six hospitalizations, and sixteen procedures later, I finally received a diagnosis. After seeing a geneticist, I was deemed a rare disease patient. I had Cowden’s Syndrome, a rare genetic disorder affecting 1 in 200,000 people. This disorder is specifically characterized by the commonality of both cancerous and benign tumors in patients, as well as vascular abnormalities and hamartomas.

I am seventeen years old. I have had nineteen surgeries. I have been admitted to the hospital thirty-two times. I have fifteen specialists. I have had over sixty scans, and more than one hundred blood draws. I have been poked and prodded so many times that my veins have developed scar tissue. I take over twenty types of medications just to get through the day. My weeks are filled with pain and tears. My months are filled with struggles and determination. However, I will never let the pain or my diagnosis stop me. I will continue to fight with every ounce of energy in my body to keep moving forward.

I have vowed to take everything I learned from each interaction in the medical field and carry those lessons into my activism and healthcare career. The opportunity to be a voice for my community is one of the biggest blessings of my life.

Following my diagnosis, the first organization I connected with was the Global Genes Project. Their symbol is the denim ribbon paired with the slogan “Hope, it’s in our Genes.” After playing an instrumental role in the creation of the first “denim ribbon” jewelry, my first idea for an awareness campaign was born. We started by giving out ribbons like the one I wear on my necklace every day. As the years progressed so did the complexity and efficiency of these events. To the blessing of all of us, the PTEN Foundation was created in 2013 and is a direct connection to patients like me. I have hosted seven events including virtual fundraisers, in-person fundraisers, and awareness campaigns. 

Despite all the years of surgeries, setbacks, and mental health struggles, I have accomplished everything no one, even myself at times, believed I could. I have held a 4.0 GPA throughout my entire high school career, my mental health has never been better, and I am being recruited to continue my athletic career in collegiate programs. I have overcome my unfortunate genetics and made the most out of the obstacles placed in my life.

I am not rare because of the diseases I was born with. I am not rare because I happened to lose the genetic lottery or even because of the collection of scars and crutches I have accrued throughout the years. I am rare because of what I have done with what life has handed me. The scars are badges of honor that prove I stood up and faced these battles head-on.

Seventeen- The Days Are Long But The Years Are Short

August 9, 2020

Dear Meghan,

HAPPY 17th BIRTHDAY my girl!

This is not the birthday we planned, but it will be amazing in its own way.

These last few months have been a lesson for the world, that plans are sometimes abruptly interrupted and that life is often unfair.  This is not news to us.  We’ve been replaying that lesson together for many years; cheering each other on, and holding each other up through surgeries, recoveries, setbacks and all the things that come with our diagnoses.

The difference this year was that everyone else was at it alongside us.

I know you well Meg, but I have learned even more about you these last few months and I could not be prouder of you.

You tend to see the parts where you struggle.  Sometimes it weighs you down.  I see the parts where you succeed.  I see the parts where the struggle is productive and you grow.  That’s why we’ll always be good together.

There is no denying that there were times this year where frustration, sadness, isolation and loneliness tried to win.  But, as I’ve said to you so many times before, you have a 100% success rate when it comes to overcoming obstacles, and this year proved no different.

You took the “remote learning” for what it had to offer.  You missed the classes that had been engaging you and challenging your brain, but you never gave up.  You spent the end of your Junior year as you did the beginning, finishing with the same perfect report card while doing a whole lot of “self-teaching.”

Swimming was wiped out in March just days before a meet that was to be your comeback.  You were trained.  You were ready.  It was cancelled.

You mourned a few days.  You worried about how to keep in shape.  Your body had never allowed you to do much land training.  You tried video after video.  You addressed your own frustrations.  You found a way.  Now, when I see you hitting a heavy bag probably in the best overall strength of your life, I can’t help but smile.  When I see photos of an 8 mile hike, when a year ago walking .5 was too much, my heart sings.  You push your body to always be better.  You don’t give up.  You inspire me.

You had gotten us to agree to that tattoo months earlier – but you couldn’t be out of the water the required time after it was done.  Then suddenly swim practice was no longer.  So, you did it.  With our blessing you took back a little of your body that day.  You took back some control.  You started to heal your soul a little more from so much trauma.

Without access to standardized exams, without the ability to tour campuses, without your college office, you knew you had to take matters into your own hands.  Focused on your desire to be a Physician’s Assistant you carefully researched Universities.  You created a list.  You reached out to swim coaches.  You set up your own calls.  You narrowed things down.  You called again.  You got connected to admissions offices.  You are well on your way to completing applications.  You could have sat back and whined.  You could have waited.  You refuse to let anything stand in the way of your goals and dreams.  When college is ready for you in the fall of 2021 you will be well-prepared.

You had a birthday vacation to Disney with your very best friend planned to the day.  You were so grateful and so excited to experience your happy place with a great deal of independence, and super fun company too.  We watched the numbers.  We stalled.  We watched some more.  Then finally I had to pull the plug.  Your birthday is one of my favorite days.  It was hard to hand you disappointment like that.  You took your time to process and picked your head up again.  There will always be 2021…. The magic will still await.

Faced with the unusual situation of being local on your birthday you talked through all the feelings.  You wanted to do something to make joy out of disappointment.  You decided you were going to use your day to make others happy.  You chose Ronald McDonald House, as you remember vividly the treatment you received when we spent a night in 2014 before your thyroid surgery.  With a little help from Aunt Lisa, you were connected to the CEO of the RMDH New Hyde Park.  I listened as you spoke to him and was just full of pride at your maturity and ability to handle yourself.  By the time you finished he was as excited as you were.

You spent hours generating a digital flyer.  You texted and posted and shared.  You set up a contactless donation option for items on our front porch.  Signs were made.  People started to reach out.

When people asked what you wanted for your birthday, you sent the flyer.

That level of selflessness causes parents hearts to actually burst with pride.

There are many things this year is not.  Many things you wished it was.  You are starting your Senior Year of High School in very uncertain times.  Your resilience is amazing.

It is not all smooth.  It is not all easy.  There are COUNTLESS bumps, and pot holes and craters in the road.  “The other shoe” drops constantly.  Sometimes as a sneaker, and other times as a steel toed boot.  Regardless, you dust yourself off and press on.

“Get up.  Dress up.  Show up.  And NEVER give up,” was written for you.

I can not promise you a smooth year.  No one can.  What I can promise is that if you continue to remain driven, focused, compassionate and loyal, you will succeed in all you do.

My wish for you is that you can spend some time this year learning to love your own strengths.  I hope that you can spend less time worried about the struggle, and more appreciating the outcome.

Explore.  The world is waiting for you.  And the world will be better for it.

I love you more. Always,

Mom

 

 

 

 

 

Blessings and Sorrows….

Blessings and sorrows are not mutually exclusive.

Disappointment can exist alongside gratitude.

You can have hope while being grounded in reality.

Faith doesn’t mean you’re never sad.

Laura Story wrote the song, “Blessings” many years ago.  It is a song that has played on repeat during a few of Meghan’s hospital stays.

The chorus,

“Cause what if your blessings come through raindrops?
What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You’re near?
What if trials of this life are Your mercies in disguise?”

 Is full of seemingly opposite concepts.  Yet so often through our rare disease journey, and our Cowden’s Syndrome mountains, and Ehlers- Danlos obstacles, this song has just made sense.

And now, during this time of pandemic and isolation, and anxiety it resonates even more.

We are freakishly accustomed to isolation.  Passing through surgeries and rehabilitation, and hospitalizations and illnesses as if they are as normal as a traffic light on the corner of a city block, means that you look at things a little differently.  Any time not spent recovering is seemingly spent traveling to and from appointments that yield little besides new appointments.  And yet, their very existence can consume every spare moment.

Cowden’s Syndrome is a constant “flashing yellow,” a caution sign, so to speak.  It is a blessing that we are equipped with the knowledge that as a people so susceptible to a variety of cancers that we must pause to aggressively screen,often twice a year, for our most sinister well known risks, (breast, thyroid, uterus, kidney, colon, skin…) and that we must investigate each new bump or lump, because you just never know.

And yet that blessing comes sometimes through raindrops, of plans foiled, and journeys rerouted.   All worth it if we have remained as we say, #beatingcowdens.

COVID-19 has rerouted most of the world this spring.

And we have learned.

We feel.  We laugh.  We cry.  We sit still.  We take walks.  We eat together. We pray.  We read.  We pet the dogs.  We sing.  We celebrate.  We mourn.  We watch TV.  We act with caution not terror.  We care about others. We read. We learn.  We talk to each other.

We “attend” church weekly for the first time in YEARS, as we have a church too many miles from us with a message we deeply need, suddenly available in our living room.

We did not pass a single graduation sign without a moment of empathy for what the graduates missed.  We celebrated every birthday drive by with loud honking horns.  We sent virtual cards when the store wasn’t an option.  We thought about sports events and recitals and parades and everything someone, somewhere had their heart set on.

We talked about everyone missing something. Every house, on every street had plans interrupted, and life rescheduled without warning. “Everyone has something.”

And in the most unusual way, for the first time in a long time, we felt a camaraderie with so many.  Everyone’s life was upended.  Everyone’s.

Don’t misunderstand, I’m not happy about any of this.  I just feel like it is easier to talk to people.  That may sound odd.  But currently people “get” isolation a bit better than before.

As swim season cut short days before a college showcase she was prepped and ready for, it wasn’t just HER.

As the SAT, and ACT play miserable games with enrollment and dates, she is united with the class of 2021.

Remote learning was… well I’ll just leave that there and say, necessary based on the state of NY in April.

We saw a 20th anniversary celebration derailed.  And yet, we had the most incredible evening.

I cancelled tickets to my first solo journey, a PTEN conference that was to be in Boston.  But, I celebrated the fact that this time I actually WAS going.  I will get to the next one.

I took the refund for the missed Billy Joel concert.  It took 2 decades for me to get the nerve to want to attend any concert again.  It may take another 2 before I want to be in a crowd that large.

Disney – our August safe zone for 12 summers is cancelled.  There is no way I could do it under these conditions.  Just none.

There were tears cried for all of the above.  But, there was also the awareness of gratitude, for health of family and friends, for two secure paychecks, and extra time with two adorable dogs.

The maintenance appointments are beginning to get caught up.  Some have been live, and some virtual.  I am undoubtedly excited about keeping some virtual medicine where the visits will allow. So far we are all faring well.

We are staying close to home.  We are choosing our interactions wisely.  We are choosing not to be crippled with fear, but rather empowered with logic, faith and compassion.

And when we head out into the world we mask.

We look daily at COVID numbers around us, and quite frankly they are disturbing. Locally we are in good shape now.  But things change quickly.

We spend these days enjoying sunshine.  We are in gratitude for a beautiful yard, and thankful that swim practice has begun again.

I promised to not complain about the 5:45 AM wake ups. And I’m trying to be true to that.

We have real conversations here about a fall schedule, without letting it overwhelm our days.  We talk about scenarios.  Her sport is a fall sport and it grows increasingly likely that her Senior season is in jeopardy.

We have conversations about school.  We know that we want to return.  But we do not know if it will come to be, at least not right away.

We have summer goals.  They are different this year.  And maybe that’s not always a bad thing.

We allow ourselves to feel every emotion here.  And for us, it helps.

Whether you’re fighting a rare disease (or two) or wrangling a teenager, now more than ever we are one.

Forgive yourself.

Blessings and sorrows are not mutually exclusive.

Disappointment can exist alongside gratitude.

You can have hope while being grounded in reality.

Faith doesn’t mean you’re never sad.

#beatingcowdens

 

  • completing my first post from my iPad on the couch as the FOOT recovers from some pretty extensive, non Cowden’s related surgery.

Adapt.  Onward.