My girl – Page 11 – beatingcowdens

Compassion Saves the Day!

Published on July 25, 2014July 25, 2014 by beatingcowdens2 Comments

Instinct.

I don’t know why I second guess her instinct. Maybe one day I’ll learn.

We arrived in Manhattan early. We dropped Mom off so she could get to her appointment. We parked the car at a better rate than I expected. We walked a few blocks nice and slow. And we arrived at our 9 AM appointment by 8:35. Paperwork completed – we were sent down to the waiting area for MRI.

An empty room, and a few minutes to spare, I stepped into the lady’s room. No sooner did I get in there than I heard Meghan speak. “Calling us already?” I wondered.

I joined her in the waiting room and the shell-shocked look on her face was a mix of horror and confusion.

“Mom, I don’t want him to stick me.”

“Relax, you don’t know. He might be very good.”

“I’m telling you Mom, this is NOT going to go well.”

And, as I tried desperately to calm her rising anxiety, we waited.

We got called back and locked our things in our locker. The technician sized her up and decided her carefully planned outfit would work and she didn’t need to change. Then I asked him if I had to remove my jewelry.

“You can not go in.”

Calmly, ” I am sure I can, she has had countless MRIs and I have stood beside her for every one.”

“I will have to ask my boss. And, we have to see if the braces are OK.”

“But, I told them about the braces when I booked the appointment.”

“Well this is a very strong magnet.”

And with that he led Meghan inside towards the machine and she promptly backed away.

“Mom, my braces!”

To which the technician replied, “You’ll have to reschedule.”

And then the anxiety took hold and my girl began to shake.

“I am very very angry,” I began in my “not so nice” voice. “You have no idea the amount of planning that went into this, and the amount of worry that has been expended by my daughter.”

“I understand…” he began, in his patronizing, not very helpful voice.

And I honestly don’t recall if he got in another word, because Mamma bear was loose.

I can’t even quote myself, because I was that flipped out by this man who dared to tell me he understood. See, I can be reasonable. I really can. You can tell me you are sorry. But you can’t tell me you understand. Because just like I don’t claim to understand anyone else’s life – no one should flippantly tell me they understand. At least not until they have seen their child through at least 11 surgeries, countless procedures, ridiculous numbers of blood tests, multiple hospitalizations, and countless sub-par phlebotomists. Not until they have sat awake at night calming their child’s trembling fears by touching them – just so they stop shaking in their sleep. Not unless they know what its like to have candid conversations about pathology reports and the virtually insurmountable malignancy fears. Unless they have heard their young girl ask if her children will one day carry this mutation that has caused her so much heartache. Unless they have heard their 10-year-old consider whether its worth it to have their own children… one day.

See sometime two weeks ago we went for a routine follow-up at the vascular surgeon. He did a sonogram of the AVM that caused so many years of heartache, and surgery in 2009, 2010, 2011, and has been blissfully quiet since the last surgery there in February 2012. And he saw some “spongy” spots in there that needed to be looked at. So we scheduled the MRI, knowing that we “saw this coming.” The Celebrex had been destroying her stomach and controlling her knee. The ultimate catch-22. So the worry was about the MRI, and the needle for the contrast, and the wonder about WHEN, not IF the next knee surgery will be.

And all this was bottled up inside of me and came spewing out at this man who dared to casually tell me he understood what it meant to”reschedule” an MRI that had been deliberately scheduled based on time and location to correspond with a trip to the oncologist, and spare her an unnecessary day wasted at a doctor’s appointment.

And as I cried for a supervisor, Toni came flipping around the corner. She sized up the situation, gave Meghan a blanket, sat her down, and told me she was going to fix it. And she did.

I have never in my life seen a supervisor in any capacity who was beyond competent, and extraordinarily compassionate. She got INTO A TAXI WITH US, and took us across town. She walked us into the facility, the entire time reassuring Meghan that she had a special nurse who would handle the needle. I saw the look in Meghan’s eye that said, “That’s what they all say.”

But Toni didn’t lie. Within minutes of walking into the facility we were greeted by Allison, and Manny. Both talked to Meghan. They looked at her arms. They told her a blind person could catch her vein. They told her it would be a butterfly. They told her no IV. They let her pick who would do the contrast dye and did it in such a reassuring way that she knew neither would feel badly if she picked the other.

MRI Dog (Rocky) always helps too... — MRI Dog (Rocky) always helps too…

Then Michelle and Chad made her feel like an old friend. They were so warm and comforting. They positioned her just so, and reassured her in such a way that she took this incredible deep breath. And when Allison came in to give the contrast dye, Chad held one hand, and I held the arm and she never even felt the needle. Chaos turned into probably the most successful MRI to date. Sweet relief.

We had NEVER been in a machine like THIS before!

But we left the facility only for me to realize we were now clear across town without our car. I held my breath and hailed my first cab. (Put that on the bucket list, and took it off in the same day!)

An hour with the oncologist, always plays with my mind a bit, but there will be time to process her recommendations for vigilant screenings necessary with Cowden’s Syndrome.

We left at almost 1, feeling quite like we had already lived several days. Then there was this matter of the “Treat Shop” on the upper West Side. I had planned to go because it was so close to the first MRI site… but not too close to our car. I walked, she limped by the end, and I am sure I will pay for this for days, but we made it. A small store full of glorious Gluten Free treats. And there were 6 dairy and soy free options as well. Heavenly – and my daughter said, “worth the pain!”

An afternoon playing with a friend from school, and the sound of girls giggling, made the horrendous morning, and the most unforgiving traffic I have seen in recent memory begin to leave my neck and shoulders. As the tension began to release I found myself reflective. Hopeful. But still unsure.

Watching her at ease on the couch I am reminded not to plan. I am reminded to trust Meghan’s instincts. I am enjoying the cool breeze, and for the moment the uncorrected mess.

I am grateful for Toni, and Manny, and Allison, and Chad and Michelle. If only everyone took their jobs so seriously. Healthcare, and the world for that matter, would be in a much better place.

Even if just for today they made BEATINGCOWDENS a little easier.

Coaches Change Lives

Published on July 13, 2014July 14, 2014 by beatingcowdensLeave a comment

I know that teachers have the power to change lives, but as my girl gets to the middle school years, I am really starting to think the power is with the coaches.

I have always wanted my daughter to be an athlete, and truth be told, THAT didn’t take much convincing. She is a natural competitor. She loves the thrill of racing. competing, and performing. She has done some time in soccer, with some fantastic coaches, who worked to nurture her. She loved her time dancing. But, her body, much to her chagrin, was not made for pounding. The knees, and hips, and major joints couldn’t handle the impact.

So we headed to the pool. Her first experience with any competitive swimming came at the age of 9, on a CYO team we were connected to through a friend. Soon after that season she tried out, and was accepted to join a 12 month team. She began with them in July of 2013. And, while the desire to compete was always strong in her, it seemed there was constantly something standing in her way.

We started the year with the goal of making 2-3 practices a week. But, in the fall things took some wild turns, and there were migraines, and neurologist visits, viruses, and fatigue, and strep, and one obstacle after another. There were weeks one practice seemed like a feat. Meghan had a hard time finding her place, because she wasn’t there much. And the cycle continued. During the fall my father became ill and passed away quite suddenly in December. That set her into a bit of a tailspin. Then in the end of December a routine thyroid appointment told us there was much to be concerned about, and that she’d need her thyroid removed.

Ironically this is about the time she started to enjoy going to practice. The coaches were intelligent, and compassionate. The kids were all finding their way.

Meghan responded so well to the two young women who coached her most often. They understood her medical trials, but treated her no differently. They pushed her just enough, but never too hard. They listened when things hurt, and gave her ways to work through it.

She mustered the courage, and stayed healthy enough to make it to her first big meet in January. She was awed by the whole experience, and truth be told, I don’t even remember what she swam. Like so many firsts, it was about getting it done.

Thyroid surgery in February sidelined her for a few weeks. And, long after her body had healed physically, her thyroid hormone levels never seemed to take to the synthetic replacements. An emergency room trip in February – 10 days post op, led to an overnight stay and the elimination of the synthetic calcium from her diet completely.

But, by the beginning of March she headed back to practice. Her coaches welcomed her, encouraged her, and built her up. She started making regular practices, and swimming CYO at the same time.

Then, in May her body quit again. Severe gastritis landed her in the local hospital for 6 days. She missed her last CYO meet. She underwent extensive testing, and the blame for the erosions in the esophagus, and the inflamed, bleeding ulcerations in her stomach lay with the Celebrex – the very medication that was allowing her to function through the chronic pain that plagues her.

Crossroads.

The elimination of Celebrex, and the discoveries of the damage it had caused in her GI tract, led to changes. Her already Gluten, Dairy, Soy free diet, became also free of beef, spices, chocolate, and the other tastes that had carried her through. Then there was the pain. The constant awareness of pain in all her major joints was playing mind games with her. The pain – very real – could be fed nothing to control it. Oral pain meds were, and still are off limits.

Weak from her stay in the hospital, it took another week home before she could even consider a return to practice. And when she did, she was angry. She was angry at her body for the pain, and angry that she couldn’t keep her old pace. She was just angry.

But the coaches, they were supportive. They let her take the lead. They let her take her time. She rested when she needed to. She left early when she had to. And finally, just about 3 weeks ago she started making full practices again.

The pain is a daily battle. One she is fighting with mental power to overcome, and the best nutrition we can offer to her.

Last week she made 4 days of swim camp with the varsity swimming head coach at the local college. 6 hours a day. She slept well. She was sore. But she was determined.

So, when we set off for the meet upstate yesterday, my expectations were low. I was hoping she would finish without disqualifying. 100m of butterfly is not for the faint of heart, especially in a 50 meter pool. But she did it. And closed in with a time .67 seconds away from qualifying her for Junior Olympics. Junior Olympics, the best of the best swimmers in her age group. An honor just to make it in the door.

We went back today to give it one more try, but it wasn’t meant to be. This year.

Close doesn’t cut it. This I know. Except when you consider that she got THIS close, despite all odds, it’s something to consider. Meghan’s synthetic thyroid replacement is not working. It’s just not. At our last appointment we found out her TSH level – the Thyroid Stimulating hormone has increased by over 300% in 6 weeks. Post operatively it remained about a 10, it took a brief dip to 6, and then over a 6 week span increased to 20.5. ABNORMALLY HIGH is what it says on the lab report. That, combined with her low levels of T4 means that the work of the thyroid, that can not be done by the gland that was removed, is not being done by the medication, which has just short of doubled since February. The endocrinologist is baffled. I’m concerned, but not shocked. He agreed to research alternative medication, but he has, “never had to prescribe one before.” For those of you not thyroid patients, you are considered hypothyroid, once the TSH goes above 5. Most people feel human between 1 and 3. I function best when mine is .5. At 20.5 you would likely not find me out of my bed. You would certainly not find me at swim practice.

“Mind over matter,” we say.

“Everyone has something,” we say.

“Show the world you are better than Cowden’s Syndrome,” we say.

And she does. All the time.

On the way home we talked a lot. We talked about obstacles, and overcoming. She started to set goals.

And then, there was this text from her coaches.

“”Hi Mrs. Ortega. (We) just wanted to send you guys a text and let you know how proud we are of Meghan. She is such a pleasure to coach and is always looking for ways to improve and be her best. Swimming isn’t only about the times, it’s about the people and having the opportunity to create and share memories, good and bad. Meghan has so much drive, and goes through more than we can even imagine. She is truly amazing to go through everything she does and still push her body in the water. Today was just the first time. We know there will be plenty more opportunities for her to make cut times, and we know she will. She has limitless potential and we want her to know that. She is truly an amazing person, and we are lucky to be able to coach her.”

And in that moment, everything was OK. Coaches have this incredible power. They can motivate and heal and push in the same breath. They are gifted with selflessness like no other. My heart is grateful for these women who will continue to shape my daughter’s future. May they always know the impact they are having on a life full of bumps, twists, and turns.

4 Doctors and a Dog Surgery

Published on July 4, 2014 by beatingcowdens2 Comments

Before the school year closed my principal told my daughter to do whatever she had the urge to this summer. Knowing she was a good kid, she understood his meaning. He told her to play hard, and not worry about getting hurt, or hurting.

When I shot him a look, he laughed and ignored me. Speaking right to Meghan, (referring to an event at school last June where she climbed a rock wall and ultimately needed hand surgery) he asked her if she would climb the rock wall again. She said, “Definitely!”

He smiled at her, knowing he had left his mark in the just over a year she spent at our school. Her confidence was up, and she knew the satisfaction of completing a task, and sometimes even winning – far outweighed the physical consequences that simply seem an inevitable consequence of being her.

And yes they are all about the same age, mine's just REALLY tall! — And yes they are all about the same age, mine’s just REALLY tall!

Turns out that very conversation was replaying in her mind as she was first to cross the finish line in the “Fun Run” this morning, held annually in memory of my cousin Meghan, her namesake. The pleasure in her eyes outweighed all other things as she held it together long enough to get in the front door before she asked for ice.

Reminding me today as educators we shape lives in ways deeper than the classroom. I am grateful…

Meghan needed this morning. As a matter of fact we needed it – so badly that I think even the rain knew. And maybe my Dad, my cousin’s “Uncle Tom,” was able to push those clouds out-of-the-way for a while. His angel wings are 7 months strong today. I think we got a special favor.

It’s hard to believe we’ve only been out of school for a week. My head is spinning.

Monday was the rheumatologist, full of confusion, still perplexed by pain without swelling that plagues so much of her body. We spent hours, and arrived home minus a copay and with little to show for the trip.

Tuesday morning as we prepped for the GI, fortunately a local appointment, I got a call from the vet. “I know Allie is scheduled to have her teeth cleaned tomorrow, but we have a cancellation. Can you bring her today?” All about getting things done, I got the dog in the car and dropped her off for a dental cleaning.

Of course, I left in tears because as tough as I want to say I am about the dogs… I am who I am.

So when they called me a bit later to tell me she would need 5 extractions, my heart almost stopped. But, there was little choice so I consented.

We headed to the GI and had a pleasant visit there. It’s always easy when things are going well, and generally the stomach is so much better since that stint in the hospital in May that we are clearly headed in the right direction. We left with an appointment in 6 weeks, and told we could slowly, and carefully start reintroducing some of the foods stripped from her already restricted diet after the diagnosis of severe gastritis.

I picked the dog up a bit later that night. And her pain medication, and her antibiotics, and as I was leaving even full of relief to see her, it was hard to tell what was whimpering louder, Allie, or my Visa.

Wednesday another local visit, this time to the orthodontist. And instead of getting the news that the braces are ready to come off, she left with more rubberbands. The initial projection of having them removed in February seemingly a distant memory, and more conversation about her teeth and how “unpredictable” they are. Why not? So to make sure that they don’t move too far in the wrong direction – we get to go back in 2 weeks, then in 4. We’ve got time I guess.

Thursday, after feeling confident that the dog was on the mend, we left for the endocrinologist in NYC. A somewhat productive conversation at least led to a mutual agreement that the synthetic medicine may not be working for her. Her fatigue, I was told, “may not” be associated with her insanely elevated blood levels. We’ll get the labs on Monday. Two more 6 weeks cycles for the levels to regulate. Then we try something new. 12 weeks is a long time to look at continuing to feel less than your best, but at least we left with a more open-minded doctor than when we started.

“This is getting old.”

I’ve heard that phrase a few times from my normally happy, easy-going kid. At 10 years and 11 months she knows chronic pain, needles, surgery and waiting better than anyone should. When she asks about my childhood, and I tell her that I also went to quite a few doctors, (although not as many as she does,) she tells me I am “lucky I didn’t know I had Cowden’s Syndrome.”

And as I am left to ponder what it must be like knowing more about genetics and your broken PTEN gene than you might ever want to, I think about how hard it must be. The thoughts that go through her head, the level of her vocabulary, her insight. So much to absorb, so much maintenance. She gets that she’s lucky in some ways, but overtaxed in others… it is so easy to forget that she’s not even 11.

That is why mornings like this one have to happen. That is why she has to sometimes taste a little bit of victory, when she feels like the challenges might swallow her up. That’s why she has to run as if she has no pain. That’s when she gets to be a kid.

This was the worst of it – this week, for doctors. This was my worst scheduling job by far. On the 14th she has one and I have one. Then on the 15th I have 4. (Genius!) And after that things lighten up considerably.

This week I settled some paperwork that has been lingering. I fought over medication with the pharmacy. I began the process of organizing a few very chaotic things.

Today we got to see some family. Meghan got to hug three great grandparents, two of which are in their mid 90s! We got to chat and to eat and take a break.

Tonight we will sit with a sweatshirt and watch the sky for fireworks.

Tonight I will thank the angel who moved the clouds away this morning.

Come on summer – we are READY!

Portrait of Courage

Published on June 20, 2014June 21, 2014 by beatingcowdensLeave a comment

We have a short window of time from the point we meet someone to make an impression on them.

Think about it. It happens all the time. You pass by countless people, on line, in the grocery store, the receptionist at the doctor’s office… And often, within moments you either remember a rude interaction, or you forget that they even existed. The brain has to protect itself to some extent. We can’t remember everyone.

But then there are some people you can’t forget.

I met her in the jewelry store a few months back. I was buying a bracelet for my girl on a particularly tough day. We struck up an easy conversation. She was young, bright, and articulate. She was friendly. She asked about my daughter and I shared. I explained Cowden’s Syndrome and some of our most recent endeavors. Then she nonchalantly told me she was a cancer survivor. Melanoma she told me. She was 22. She told me she planned to be a teacher. I imagine she will be a great one when it’s time. At some point I brought up our trip to Disney, and how it might be time to take a break, and save some money. She told me – wise beyond her years – that the bills will always be there. Go. Enjoy.

Wednesday night I went into the jewelry store again. I struck up an easy conversation with another employee. I wanted to get a necklace repaired for Meghan. It had a “hope” ribbon and a spoon. She asked about it and I explained again about Cowden’s Syndrome, and the Spoon Theory. When she brought me the necklace she wouldn’t take any money. Instead, she offered me a “pay it forward” opportunity. She showed me a “gofundme” page on her iphone. She explained that this young girl, now 24, was battling stage 4 malignant melanoma, and if I felt so inclined, I could contribute there.

My heart began to race. I recognized this girl. She was the one, the cancer survivor who had helped me months prior. I asked a million questions, rapid fire. The kind woman answered them. I was stunned. A melanoma survivor, she found a lump a few months ago, which led to a CT and PET scan, and the determination that the melanoma had spread. There will be treatment. She is tough. She will fight.

24 years old.

My sister is 25. My brother is 25. My cousins are right about that age. They are all at various points of setting up their lives, not fighting for them.

She could have been anyone. This girl in the jewelry store. But she was dynamic. Because apparently that is who she is. She is the person that sticks with you.

Read her story here. http://www.silive.com/sports/index.ssf/2014/06/college_of_staten_island_to_ho.html#incart_river

And if you are so inclined, do what you can to help.

That is a conversation Meghan and I have all the time.

Life is not easy. It is often unfair. Frequently she feels like crap, and always she seems to hurt.

Yet, I tell her all the time, you have a short window where people will make a judgement about you. It’s not fair either, but it’s true.

And when you live your life chronically ill and/or in pain, you may sometimes feel like you have to lie.

But I am helping her find the balance. Ways that she can still be honest about what she’s going through, and say what she means, with an upbeat delivery.

Meghan has been blessed with a beautiful elementary school experience that spanned 6 years and 2 schools. And although we elected to change schools at the very end of fourth grade, she can reflect and see the positive experiences gained in both places. It seems everything happened as it should.

And in third grade, one of the roughest years of her life, she was met with one of the most compassionate women I will ever know. A gifted teacher who cared so much more about the child than the curriculum. And this year, when there was loss, deep loss, and surgery, and more major struggles there were several excellent women in her path as educators, and sources of strength. And again, there was one with a sick child of her own, who just “got it” from the beginning. My gratitude knows no limits.

Today we sat for a beautiful moving up ceremony. Everything was perfect. The length and content of the ceremony carried out through the careful precision of true professionals. The children were calm and well-behaved. Everything was smooth. They all made it look easy, but I know all too well that its not.

Thirty years ago I walked across that same stage. Today a lot of things came full circle, and after 17 plus years of teaching in my school, I sat in the seat of a parent, and I could not have been more proud.

She received two medals for school service, and she was beaming. Then they called her name for the “Portrait in Courage” Award. And the tears flowed. Mine – not hers. So touched by the time it took to match my child with an award that was a perfect fit.

See I always knew she had courage. And I think most people who meet her would never deny it. But lately, struggling with the pain, there have been some dark days.

So we talk alot. And I hope and pray that my words get through.

I tell her what a gift she has, that people view her has positive, and courageous. I tell her that just because I happened to agree doesn’t mean the responsibility ends there. When people view you this way, they look to you. They feed off of your energy. You inspire them to be better people.

It doesn’t mean you have to be positive all the time, because we all have our days – but it means most of your work has to be upbeat.

Today she hurt. As she always does. And I could see it. But she never said it. Tonight I felt her knee, and that all too familiar pulsing seems to be finding its way back. She asks me not to hug her. Especially in the morning – because my touch hurts. There are dark circles under her eyes. But we went out all day today, as a family. And she was amazing.

She held that plaque in her purse. She wore her medals. She smiled. She looked people in the eye. She spoke. She lit up rooms.

Danielle, from the beginning of my story, has never met Meghan. Yet to me there are so many similarities. I told Meghan all about her. She gets it. She gets a lot of things. And as I struggle to help her find the gentle balance at 10 years old, of being positive and honest – I see role models for her in our small community.

“Portrait of Courage” indeed. As her teacher said, she has endured more in her first decade of life than most, and is a force to be reckoned with.

For Meghan, for Danielle, and for the others who we cross paths with every day – you inspire. You lead by example. You ARE changing the world.

Thank you.

Groundhog Day

Published on June 17, 2014June 17, 2014 by beatingcowdensLeave a comment

“Groundhog Day” – who doesn’t remember the movie? There have been plenty of days I have thought of it. I may need to watch it again soon.

Pediatric Endocrinology is a ridiculously small sub specialty.

There is this web of interconnections, and all sorts of people who have lost sight of the patient.

Ultimately I may need to head out-of-state to try to get a clean opinion. But, I have to take that and so many other things one step at a time.

But, after the travesty on Thursday, I was left with little choice but to keep me appointment with the surgeon at our current hospital.

You remember the surgeon?

He’s the one who did a great job on the surgery. The one who said, when we went for the follow-up, that he only needed to see her ever again if she felt anything in her neck. And when she did feel something in her neck I had to jump through 12 hoops to convince him he should see her. And then when he saw her, he proclaimed the lump a salivary gland and told us to return “one more time” in a few weeks.

But then there was that horrendous week in the hospital. And while she was being treated for gastritis, a hematologist felt her neck and said, “It’s a lymph node.” So they sent her for a sonogram which said it was a lymph node.

So when we went back to see the surgeon and brought him the sonogram report he got annoyed and ordered his own ultrasound, which we got to wait 3 hours for. And then he called me to tell me everything was fine, even after the 45 minute exam where the tech measured the lymph node in her neck. So we were good to part ways until I asked for a copy of that report too.

And 10 minutes later my cell phone rang telling me doctor “I am sure it’s fine, but just in case,” wanted to see her again. So after some haggling we arranged for June 16th at 1. Which was ok. Until they called me Friday to tell me I could come in at 9:30 or 10:45. “How about 1, like you said originally?”

So the appointment was set for 1, and I punched out of work at 12. We got to the hospital at exactly 1 (a 20 mile drive) after some typical traffic, and a near miss of a three car accident in front of us on the highway (thank you angels) on line for the parking garage. I called up to let them know we’d be a few minutes. And we sat. And we sat And we sat.

Finally we began to inch forward just a bit. Then there was just one car in front of me.

And he was not paying a bit of attention, as a large black SUV cut right into the front of the line.

Now at times like this I try to focus. Maybe there was a medical emergency. Maybe… Maybe…

So as much as I wanted to get out of my car screaming, I held my composure and talked about all the reasons they might have done that. Until a hospital employee, likely late for work, surfaced as the driver. He left his car across the sidewalk, took the ticket from the attendant and raced into the hospital.

It was 1:35.

And then I noticed some scurrying.

I thought the car was stuck.

It turns out the self-important line cutter had taken his keys- blocking the entrance and causing the line of 20 cars behind me to continue to grow.

The car was booted and moved.

We got to the appointment around 2.

The doctor spoke to Meghan. He asked her how she was doing. She told him about her pain. And about her throat clearing. And about how tired she is. She mentioned working hard to get so swim practice.

I don’t think he heard a word.

He felt her neck and proudly proclaimed he felt nothing. By now I was so tired of this I just wanted to get out. I figured we were done. I was glad he could feel nothing. If only I trusted him. Truth be told, I haven’t put a hand on her neck in 4 weeks. There is just no point.

“I want to see her at the end of the summer.”

WHAT?????????????????????????????????????????????????????????????????????????????????????????????????????????????????

3 visits ago he never wanted to see her again. Now he has ultrasound and 2 visits at which he told me she was fine. Let it go. Unless of course, he just doesn’t quite trust himself…

“I’m glad she’s feeling so well.”

EXCUSE ME?????????? Did you just see MY kid? Because MY KID is incredibly polite, and often very positive. She is articulate and bright, but she will NEVER tell you she feels WELL. She doesn’t believe in lying.

Some days this is like a bad movie. Or a dream where your finger is stuck in the door and it keeps closing over, and over, and over again.

August 18th.

Damn.

So much for a month without doctors.

When do you, as the Mom, put an end to it? Knowing that any “miss” falls right on you, it’s so hard to defy their recommendations, even when their competence can be questioned.

Rheumatology on the 30th. GI on July 2nd, and Pediatric Endocrinology AGAIN on July 3rd. And that’s just the first week.

I guess I better plan something fun for the 1st. Something worthy of a stepping stone for that bridge…

Her entire right side hurts to the touch tonight. Every natural pain remedy I research has something her reflux doesn’t allow.

She fell asleep tonight reading her Bible. Our Pastor sent her a long letter with some great verses of comfort. She hasn’t stopped rereading it.

Sigh…

Two hours to get in. Two hours to get home. Less than 30 minutes on the floor of the hospital.

“This is getting old Mom.” Wise kid.

“‘Cause what if your blessings come through rain drops
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” – Laura Story

Snow Boots

Published on June 12, 2014 by beatingcowdens7 Comments

The winter boots are still in the closet.

It’s June 12th.

Actually Meghan’s room has a basket of winter boots that are not only off-season, but are too small for her.

It’s June 12th, and that is definitely a new record for me.

In my old life clothes got changed systematically in April, and early October. Jackets got washed, shoes got put away.

That was my old life. I don’t remember it much.

I don’t really have a big closet. The spring shoes are upstairs in the hallway. All over the floor. I’ve been getting one pair at a time as I need them, but if I don’t hurry and make the switch soon winter shoes will take over my bedroom floor.

Thankfully, Mother Nature seems confused about the season. That is buying me some time.

In my old life, nothing was really on the floor – ever.

We went to the doctor today. Shocking news really, I know.

We went to the doctor today in hopes of replacing the endocrinologist with someone more open-minded, and “outside the box.”

EPIC FAIL.

What we got instead was a closed box, closed-minded,”I won’t take on your kid, so stay where you are” doctor, in a really bad suit. (And I’m not much about fashion – so you know it was a REALLY bad suit.)

I had lots of time to look at her, and the suit while I used my hand to keep my mouth from spilling out my actual thoughts and embarrassing my daughter.

I brought the 3 page synopsis of tests, hospitalizations, and medications.

I brought the 3 INCH binder full of lab tests and pathology reports.

I brought the CD of the neck sonogram.

She glanced at her most recent blood work. She told me her TSH was too high. She told me she needed more Synthroid. She told me her current team was just fine. Then she told me twice they were better suited to treat a Cowden’s Syndrome patient than she. Feel like a leper much?

I asked all sorts of questions. I asked about T3, and potential problems with synthetic absorption. I reminded her that in addition to PTEN she has an MTHFR mutation which impacts her ability to process B12. I asked if there could be anything else she has trouble processing. (Hint Hint… synthetic thyroid hormone?)

“You’re very smart,” she tells me. “You know a lot,” she says. Yet, she deflects my questions like a goalie with a hockey puck.

News flash. I don’t need stroking – just answers.

But I watch my tongue. And I watch my tone, because my daughter is watching my every move, my body language, my attitude. She is using my response to gauge whether she needs to be uptight.

I asked what was the upper limit for synthroid. I was told there was none. I was told that the dose would just continue to be increased. I was told she would likely reach .200 mcg. I expressed concern. I was told not to worry. The body only absorbs a percentage of the synthetics. Um, that would be the point of my worry. She doesn’t have a good history of secreting junk.

I got a lesson on the pituitary and the up and down regulation of TSH. I was told when to dose the medicine. I reminded her I have been on thyroid replacement for 27 years.

She asked me if she had answered all my questions. In my old life I might have politely said, “yes.” But, this is not my old life. I smiled, shook her hand, and said “No, actually you didn’t, but I don’t think you know the answers.” Then we left.

In my old life things were neater, and more orderly in every aspect. Sometimes I miss the order. But not for long. There is nothing orderly about this kid, except her behavior (98% of the time,) and I am learning to embrace the chaos.

She woke this morning feeling like real crap. Exhausted from swim practice (she made it almost through) and fifth grade trip yesterday. She hurts. She is mellow. She has fun with the kids, but she’s not herself.

Maybe it will just take time, but hours and weeks and months of childhood seem to be ticking away.

I pushed her today to start making dates with friends for the summer. Her friend’s parents must think I am weird.

It’s as important, or MORE important to plan pay time as it is to plan doctor’s appointments – for so many reasons. And since we have so many appointments, I want to start with the friend time – NOW.

We live in the middle of New York City. One would think finding pediatric endocrinology in the mood for a challenge would be much simpler than this. Instead I am left to return to the surgeon on Monday, so he can validate himself by telling me he doesn’t feel anything in her neck. And then, back to see the resident of her endocrinologist in July. (The actual doctor takes off February, July and August – so he has yet to see her since the surgery.)

Life is not ours to plan. But, we have to try to schedule the fun stuff before the days get away.

We RSVP while holding our breath.

There is more “One day at a time…” than I have ever known.

Maybe there will be some time to get those snow boots away. In the mean time, if you do stop by- don’t judge the hallway. Or the closet. Or the dog fur.

I took a walk yesterday, and another one today. I listened to music. It’s a slow process, but I am working on my emotional health.

It seems to be the only thing I can control.

I am working on those foundation stones for Meghan’s bridge.

And in the mean time, if you happen to need any snow boots – I can get them for you in a hurry. I know exactly where they are.

“Dear whatever doesn’t kill me, I’m strong enough now. Thanks.”

Published on May 24, 2014May 24, 2014 by beatingcowdens4 Comments

I needed today. For so many reasons.

Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.

We all slept. Late. All three of us. I mean 10:00. A good sign that we – all three- are shot.

I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk. And she was sensitive to the touch, so it was even hard to rub her. But everything is a little better at 10 AM.

And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills. I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.

And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.

Because we got home, and then Felix made lunch. I stayed home with Meghan and her “better but not gone” stomach pain.

After that he took the working car to get the wood for the deck railing that has completely rotted out.

No one can really explain that – but we are kind of used to it.

The deck – pressure treated wood – was put together between 2000 and 2004. By all accounts it is falling apart. And its not from faulty construction. The base is solid. The center is stable. But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting. Maybe it’s too much sun. Maybe it’s a stain product we used early in its life. It really doesn’t matter. It’s done and has to go on the budget list for a full replacement in the near future. But for now we patch.

Triage.

The bay window wins. Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely. The entire window – hole in the house and all – needs to be replaced.

So while Felix was getting the wood, he priced the window Tonight we have to do some comparison work. Then the order has to go in.

But this afternoon I sat still. For a few hours. And I really, really, really liked it.

It’s easy to feel guilty. That there are things that need doing. There are people who could use our help. And there are people who need to be visited. And there are phone calls that need to be made. But, last week my Mom told me if I didn’t take some time for myself I might lose my mind. She’s right. Although I could say the same to her, and most people I know. It’s hard for any of us to just stop and sit still.

I haven’t written since Monday. The arrogance I encountered that day kept me stewing for most of the week. And… I don’t think I’m over it yet. But I wanted to pull my thoughts together and go at it with a clear head. But if I keep waiting for a clear head I may have to stop writing forever. Because the pain my child endures – regularly- is horrendous and worsening.

If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared. The good, the bad, and the arrogant.

A friend who endures more than her share of struggles with her children placed this on my wall this week. I can’t tell you how many times I laughed out loud.

Tuesday I called the surgeon’s office after school to inquire about the sonogram. He spoke to me – to tell me that there is absolutely nothing wrong with her neck.

Insert sigh of relief here, right?

So I said thank you, and requested a copy of the report. It was to be emailed to me within 10 minutes.

And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report. You see, the local sonogram bothered the surgeon. So when we went to have it done I watched the screen like the hawk I am. I watched every measurement, every angle for 30 minutes. I SAW the exact dimensions from the local sonogram recorded. And yet the report was the most incomplete one I have ever seen. It simply said “normal” several times. It was contained on one sheet of paper, unlike the three I had become used to.

I wanted to be relieved so badly. I wanted to take a breath and say “whew!”

But I feel the lump in her neck. And she feels it.

What I needed was a doctor to say, “It’s there and it’s fine.” THAT would have been OK. THAT would have settled me down. But, to say it’s NOT there…. THAT leaves me with a whole other set of unsettled nerves.

And then the phone rang. Again. And it was the surgeon’s office. His secretary told me we needed to go back for a follow up. I was stunned. And perplexed.

Why a follow up? He just told me everything was fine!

The doctor just wants to see her one more time before the summer.

This from the same surgeon who three visits ago NEVER wanted to see us again.

So I set the appointment for June 16th. And I wondered really what I am supposed to think.

So I got the number for medical records and I got a CD of that exam placed on CD.

I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.

And this isn’t even the pressing problem right now. Or at least we don’t think so.

The next set of thyroid labs are going to be next week. We need to see if this new dose is making ANY difference in her thyroid hormone. If it is, well great. And if it isn’t… someone needs to start figuring out what’s going on.

There is pain. All the time. Terrible pain. Worse when she wakes up. And, when she tries to walk, up the stairs. Or down. Or if she tries to lift something. Or bend to pet the dogs. Or run. She made it through 18 minutes of swim practice on Weds. Then I had to help her get dressed.

The pain varies in intensity. But it doesn’t leave. And she is frustrated. And frightened.

Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever. I can handle this pain a bit longer, but you NEED to help me. I CAN NOT do this forever.”

No pressure.

I get it Meg. I get it. I don’t really get your pain. But I get the urgency. I am all over it. Trust me.

But that kind of pressure will wipe you out.

The GI on Weds. was happy with her progress. The pathology showed cellular changes all through the GI tract. She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it. She gave us the “reflux” diet. She reviewed medication and supplements. She made sure I have an ENT appointment – for June 3rd. She things the upper esophageal damage is caused by a chronic post nasal drip. And maybe “fingers crossed,” that will be the throat clearing too. Because if not there is another diet – with more restrictions on the horizon. But we can’t race. We will see her in the beginning of July. We are clear on the directions. Especially the one that said, “no pain medicine by mouth.” The damage done by 4 years of NSAIDs will take months to reverse. If we are lucky. Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.

That doesn’t leave a whole lot of options.

So from 200mg a day of a strong NSAID to nothing…

I ordered some herbs. Some that have anti inflammatory properties. I have read and researched them and have sold them to her as the best thing since Celebrex. They will be here tomorrow. Let’s all pray I am right.

Some people think she exaggerates, because there are glimmers of smiles. There are times when she laughs. There are people who want her to feel better just because time has passed. Trust me no one wants this more than her parents.

I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all. We are isolated. Family and friends alike are often unaware of what to say, or do. We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear. We are lucky, fortunate, blessed, to have each other. We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.

I needed today. I did random things like taking the 5 gigs of pictures and video off the iPhone. I uploaded them to shutterfly. I combined them with the family photos and I placed the first print order since August of 2012. We are up to August of 2013 now. You see I used to be all over this kind of thing. But life… it gets in the way.

And the nicest part about today was looking at the memories. The smiles. The happy times in those photos. You see today I needed to be reminded…

And that is what today was about.

Because next week there is Field Day, with prayers that there can be mobility by then. And next week there is blood work. And next week there is swim practice, and so many things that we want to go very, very well.

Today, I needed today.

The Arrogance Epidemic

Published on May 19, 2014May 19, 2014 by beatingcowdens2 Comments

Truly. Under diagnosed, and under treated. Spreading wildly. Seems especially prevalent among experienced medical professionals.

Not all are affected. Some are immune. Some resist with all their might.

Some embrace the arrogance. They seem to enjoy spreading it to those around them.

Others hide the arrogance, carefully and efficiently. Until the moment they are challenged. Then they unleash the beast full force.

We met again with the thyroid surgeon today. Two weeks ago we requested an appointment because Meghan felt something in her neck. I have learned from experience not to question Meghan. She has proven time and again to have an awareness if her body that defies explanation.

Two weeks ago he felt her neck and declared the lump she felt to be a salivary gland. He said some small lymph nodes surrounded it, but when we came back in two weeks it would all be gone. He said it with a good amount of authority- but not arrogance. He reminded us of her clean pathology report. He directed us not to worry.

And maybe we would have paid it no mind, except that’s not how life tends to go around here.

So, three days after the surgeon declared the “salivary gland” in her neck, we ended up inpatient at a local hospital with an attack of what ended up being severe gastritis.

While they were sorting themselves out, the pediatrician (who is as far from arrogant as they come,) remembered feeling the neck a few days prior. He had deemed it a lymph node, and figured while we were there he’d have a colleague, a hematologist/oncologist give it a feel. She deemed it a lymph node too and sent Meghan for ultrasound.

Just sitting around the hospital with tons of time as they tried to figure out the root cause of the GI pain, we were amenable to a neck ultrasound.

Now I am not taking sides- I have experienced great sonograms and horrendous ones- and witnessed them- in the best and worst locations. So I take reports as point of information, and never shun clarification. But this one clearly said lymph node- almost 2cm. Subsequent blood test ruled out the salivary gland theory as well.

So Thursday, after we were discharged I contacted the surgeon’s office. We had an appointment today, Monday the 19th. I spoke to the staff. I sent the ultrasound report. I asked them to schedule a sonogram at their facility for us to compare the one we just received. I figured we’d see the doctor and then have the sonogram.

Except as we entered the exam room he was agitated. Looking at the ultrasound report clearly for the first time, he said,”this must have been taken before the surgery.” Seeing it was Meghan’s report I interjected- “No it was taken Thursday the 8th.”

Enter arrogance. I swear his whole demeanor changed and it was like the arrogance bubbled up from his toes.

Now I will be honest- I don’t have a history of playing nice in the sandbox when I am pissed, and I don’t do arrogant well.

So, I may not have been the sweetest. But two weeks ago he was very concerned if she’d had fever, or vomiting. He made it a point to weigh her. Now- she spent 6 days in the hospital and no scale? Somehow I let that go.

What I couldn’t let go was his statement that there was nothing in her neck that was enlarged. See, you can tell me there is nothing to WORRY about. That I will take happily. But you can’t tell me nothing is there. Because 2 doctors an ultrasound my daughter and my own fingers tell me there is.

So we’ll get an ultrasound and then I’ll call you tomorrow to tell you nothing is wrong.

From your arrogant lips to God’s gentle ears…

So they had the girl, who just made her way back to school after a week in the hospital wait for three hours. We made it home around 7.

I know the treatment for arrogance when it overtakes common sense. Time to be done with it. A new consult has been established but we wait- so as not to cut off the nose to spite the face…

In the mean time I know we are not the only ones. There are so many good medical professionals. There are so many who take the time to think, and care, and treat. And then there are others.

The problem with Cowden’s Syndrome is the sheer numbers of doctors we see. The problem is hard to avoid.

Plus- as my grandfather once told me- I can be a little difficult to work with.

It’s all about my girl and whatever she needs….

The Spoon Theory

Published on May 17, 2014 by beatingcowdensLeave a comment

While we were in the hospital last week, a good friend, who is chronically ill herself, sent Meghan a very interesting article.

It was about “The Spoon Theory,” and explained chronic illness from the perspective of one who lives it every day.

Meghan being incredibly literate, and a master at figurative language, picked up the analogies quite quickly, and while the author wrote about lupus, a disorder Meghan does NOT have, she found the text and related analogies very meaningful.

Our dialogue this week has already begun to include questions about how many “spoons” she has today. As someone who lives with my own share of issues, but none as severe as my daughter, this has opened up communication in a fantastic way.

The author has copyrighted the story, so I have permission only to link you to it, but I encourage you to give it a read.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

And thank you my dear friend for sharing. Thank you.

Glorious Unfolding

Published on May 14, 2014 by beatingcowdens2 Comments

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding…

Steven Curtis Chapman

I believe in God. I believe in the power of prayer. I don’t believe in a predestined life, but I don’t believe in coincidence either.

This song was playing in the car last week one night. Meghan was having a tough time of things, and I had gone to clear my head. When I came home she was still awake so I downloaded it to her Ipad. We laid together in her bed and held each other. The tears flowed. The comfort of each other, and the comfort of the knowledge that we were not alone – not abandoned – ever – eventually allowed her to rest.

The song is in her playlist for “bed.” It is a beautiful compilation of songs with a purpose. And as I sit, in a dark hospital room, on our 6th night here the songs play in the background. Their messages soothing for my tired soul.

I didn’t want to be here. I mean not in any hospital, but especially not in THIS hospital. Somewhere along the line I had decided that I would NEVER want to be HERE.

Well that was my first mistake. Cause really, it’s not up to me. And that is a hard reality to accept.

The pediatrician works from here. They respect him. We adore him. He loves Meghan like a granddaughter. She was really sick. If I headed anywhere else I would have been flying blind.

They moved at a pace I sometimes felt was too slow. But, I as an anxious Mom, am in no position to judge pacing.

There were staff I could have done without – so I excused them from our room. But not most of them. Most of them have been kind and compassionate.

Being local allowed for FAMILY and FRIEND visits, and even a visit from our pastor, which mean so much to Meghan on really long days.

The tests were run one at a time, but they all mattered.

Once they realized how much the IV – and all its complications – caused her grave anxiety, they took extra care.

The dietary team has done their best with a complicated kid.

The GI doctor has been thorough, professional and meticulous. She had read about Meghan and about Cowden’s. She TALKS to the pediatrician, and our hematologist in NYC, and the ENT we will soon see.

The lab tests were all inconclusive.

The sonogram didn’t tell us anything.

The CT scan was essentially normal.

The medications, continuously adjusted, have provided little relief.

So as we prepared for the endoscopy we were anxious.

See, you never WANT anything to be wrong. But then there is a point where you KNOW something is. Then you worry about finding out what it is, or NOT finding out. It’s hard to know what to be more worried about.

Heading into the test today we were both anxious.

They say a picture is worth a thousand words.

We have pictures now.

Pictures of a GI tract so damaged by SEVERE Gastritis that it will take months to years to recover it. She has damage from the top of her throat straight down into the beginning of the small intestine.

Inside the stomach is evidence of ulcerations. Many.

The esophagus that should be smooth – a mess of bumps and sores.

Remind me to NEVER EVER EVER doubt her tolerance for pain.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

The pictures make me ill. Because they are evidence of MORE suffering in my young girl.

To her they are vindication. And that makes me sad too.

She hurts every day.

She says it. And I tell her I get it. But I don’t think I do.

Pain like THAT has to be isolating.

Because every day she has to get up and function anyway…

And not too many people her age would even try to relate.

The GI told me she sees damage like this “every once in a while” in patients, but they are always 50 and older.

She told me the biopsy will likely show it to all be medication induced. The medication I have given her for years. The miracle drug that kept her mobile.

We will wait until next Wednesday in her office to look at the pathology, and to review every prescription and supplement that crosses her lips.

In the mean time there is medicine to control the spasms in the stomach every 4 hours. There is medicine to try to control the acid so maybe she can start to eat.

There is more time off from school. At the tail end of 5th grade. When the days are supposed to be fun.

There are MORE dietary restrictions.

But somewhere in the pain is vindication. For the girl who knows her body better than any doctor. There is proof. There are pictures.

But I don’t believe in coincidence.

This is her second GI related hospitalization since her thyroid was removed. That’s weird.

Her thyroid numbers are NOT normalizing. So she has been “hypothyroid” for three months.

I mentioned it a few dozen times this week. No one bit.

I’ve hit google. And my sister’s friend hit on an article too. I will keep looking.

Somehow this is all connected. The thyroid. The medication. The pain. The gastritis. The Cowden’s Syndrome.

But I have to be patient. The pieces will come together. In time. With hard work. And good doctors. And prayer.

We prayed today for an explanation. We asked for an answer to explain her pain. Our prayers were answered.

Now we pray for healing. Of her tired body. And her tired mind. We pray for the development of a TEAM of smart doctors who communicate, and we recognize with gratitude it all began where I never wanted to be.

There is work to be done. There are more concerns to be addressed. The road will continue to have bumps and twists and turns.

But somewhere along the path there is time to be grateful – for the GI who trusted her gut and did the scope TODAY. For the anesthesiologist who repaired a failing IV while she was ASLEEP. For my girl who gets to say “see this is WHY my stomach hurts.”

And that’s all I can process for one very long day.

I think I’ll sleep between the midnight and 4 am doses.