It’s not a sprint… It’s a marathon

Published on April 22, 2014April 22, 2014 by beatingcowdens3 Comments

I’m not a runner. At least not in the traditional way my sisters run. I don’t really run unless I am being chased. Tried it for a while but the knees and the back weren’t interested. So the only running I do is from appointment to appointment.

I guess I run- in a metaphorical sense.

This has been a busy week at our house. In addition to the host of emotions Friday, we spent the earlier part of the week addressing mandatory appointments – as it seems we do with every single vacation. It’s old I tell you. It’s old.

Monday was physical therapy, and then additional genetics for me. THAT will be a follow-up in and of itself.

Tuesday was our Integrative Medicine doctor on Long Island. The one who listens carefully and THINKS about my child before making a move. He ordered a slew of tests. He is concerned that ALL food seems to be bothering her stomach to some degree. But, he didn’t rush us out to a GI. He knew we’d get brushed off. At 5 foot 2, and about 100 pounds, my tall, thin, beautiful girl is hardly the poster child for malabsorption. But he knows me well enough to know that I am overloading her with nutrient rich foods to compensate.

We had a wonderful, long talk about nutritional cleansing, and how I would have given my eye teeth for products like the ones I use now to have been on the market 9 years ago when I began my journey with Meghan. He will look, and sample. We will talk.

But, he no longer blames one food for Meghan’s pain. He thinks the balance of her gut, from years on edge – needs some help. He has suggestions. We will wait for the lab work. Half done last Thursday – the rest tomorrow. Then we will talk. On the phone. And we will make a plan. Have I mentioned how nice it is when you have a doctor who is a fully compassionate human?

And Wednesday there was chaos. A 9:00 for me at NYU with my oncologist. She reviewed my MRI to tell me the spleen tumors are growing – slowly. But, they can stay for a while. Whew! And the cysts on my kidney I forgot all about – stable as well. WIN!

And then there was Sloan for Meghan. Blood work first. Then a follow up with the surgeon who cleared her from the thyroid with no need to return again. Of course even after waiting almost 2 hours for that appointment – the blood wasn’t in. And our endocrinologist was “otherwise engaged” and unable to see us on a Wednesday. So rather than come up twice, we opted to have him just review the blood work.

Then we squeezed in a visit to the ENT who took her tonsils out- hoping he could shed some light on 6 months of throat clearing. We left with the assurance that he had no definitive diagnosis, and he doubled her reflux meds and prescribed a new nasal spray, for inflammation in the nose. That he wasn’t sure was allergy related… I have to call in 2 weeks. Anyone picking up a trend?

The call from the PA about the AM lab work came around 4:30 while Meghan was at swim.

“The thyroid numbers are essentially unchanged, so we are going to raise her medication.”

Me: “How could that be? you raised her dose 6 weeks ago when the TSH was 10.69.” (reference range high is in the 4s)

“Obviously she needs a higher dose.”

“What was the TSH?”

“We are going to raise her dose to 125mcg” (Essentially my dose)

“WHAT WAS THE TSH?”

“The doctor feels this will help get her numbers in range.”

“WHAT WAS THE NUMBER OF THE TSH?!!?!?!?!??!”

Finally…. “10.54”

Me,” Down only .15 in 6 weeks? What is the problem? Did you test her T4 and T3?”

“Only the T4 and its normal.”

“Why not the T3?”

“It’s not relevant.”

“REALLY? Why?…” After no response I continued,”When you have a patient not responding traditionally I would think that you would run every test to get the greater picture.”

“We don’t believe in T3” (To which I actually laughed. It’s not like it’s Santa Claus or the Easter Bunny!)

“What do you mean you don’t believe in it? Obviously Meghan is not absorbing the synthroid and there has to be a reason. I think we need to start investigating before she is hypothyroid for too long.”

“Well, Mrs. Ortega I think you and I are saying the same thing. She needs more medicine.”

“No, I am saying let’s figure out WHY the medicine is not working. You are saying to continue to raise the dose of what is NOT working without looking at possible reasons why.”

“Well we will see in 6 weeks.”

Yep. And for 6 more weeks she will drag her exhausted bottom around – so hypothyroid I know I would barely function. Hopefully by then I will have found us an endocrinologist willing to accept that there is no “box” Meghan will fit it. There is not rule her body will not defy. I am appalled that I am supposedly with the best of the best. Leaves a scary feeling in your heart.

Onward to the doctor search.

The mail arrived this morning, as we were headed to the orthodontist. There was a script for Meghan’s next thyroid test. There was no copy of the labs. They HATE it when I ask for the labs. So I called and insisted they be EMailed to me. It was quickly clear why they didn’t send it, as another test was disconcertingly out of range. A quick forward to my LI doctor… and we wait.

As we headed out to the orthodontist the mood was light. Meghan was ready to take impressions for the plan to remove the braces next month. And when they called me o the back to tell me her bite had “over-corrected” and it would take some time to fix – I just about took the deep breath I needed to speak quietly.

Basically I was being told that because my daughter did EVERYTHING she was told to do religiously she had done TOO good of a job. Now her overbite had been corrected into teeth that meet to closely. She stared at me. I attacked a bit. I asked why they thought it was OK to month after month make promises that were not to be fulfilled. Perhaps it was ok for her to get defensive. Maybe I was attacking. But, I don’t understand why you say so much to a child. From the beginning she was flat-out promised her teeth would be ready before her 5th grade graduation. Now she is getting a MAYBE for September? Don’t misunderstand me. I want them on until they are done. But my issue is that SHE sees the doctor and his staff alone. THEY say whatever without me being there. It is NOT ok for you to INTEND to be ready for impressions, and then have things go so wrong in 5 weeks that we appear to be set back 3 months!

The doctor obviously got the message I had had enough. I like him. I really do. And he came out to say to me he …wait for it… had NEVER seen anything like this. How UNUSUAL it was. And how 99% of the time things run according to plan. He apologized. I reminded him that I had already told him several times to be careful with my girl – she’s not a “typical” case of anything. I asked them all to watch what they said moving forward. But it was too late.

To Meghan the message was clear. She was once again the “unusual” case, and once again. And to make matters worse this time her GOOD behavior may have contributed. What a tough message for any kid.

This is the part where I caution you – friends and family alike to withhold any comments about how it could be worse. Or how its good the teeth are set right before the braces come off. Or your friend/cousin/brother/kid had their braces on for 5 or 6 or 7 or 8 years and she should be happy it will only be 2. Because really, at some point something should go her way. At some point when the orthodontist (who mind you she has been working with on appliances since just after she turned 7 (4 years in August)) says 18 months for the braces, that it should just be 18 months. Because that’s what happens to the “normal” kids.

We have not lost our grip on reality. I promise. We get it. But some days… some days I have to wonder where the limit is.

Some days when she complains that she just wants to be “normal,” and I try to assure her she is. I remember days like this at the orthodontist. Or the 2 days it took her to recover from a 3 hour outdoor play date earlier this week. Or the “fake spring break” that had more trips to doctors than anything else – again. And the follow ups that will continue in the weeks ahead.

I cried when we left the orthodontist office. I cried because I sometimes am just so frustrated at how much she is asked to endure. And she sat. Quietly. Until we got home. And she screamed a loud piercing scream. And we hugged. Because we know we are in this together. And we know no matter how bad it gets, not matter how tough it is – we have to keep on keeping on.

Tonight I stopped at the mall and bought these.

One for each of us. A reminder about the meaning behind all that metaphorical running.

The car got towed today. The old one. I think its dead. Permanently. We have an appointment to get the oil changed on the new one at 8 am. We’ll talk to the mechanic then.

Then there is that fasting blood test at 10:15.

The whole identity theft thing seems almost ages ago.

No wonder I don’t run for fun. Too busy running as a way of life.

No worries – We are BEATINGCOWDENS!

Honored!

Published on April 4, 2014April 4, 2014 by beatingcowdens4 Comments

The video is a little tough at points – but you get the idea.

Side by side with my girl!! LOVE THIS KID!

Losing the Battle – to Win the War!

Published on March 30, 2014March 30, 2014 by beatingcowdens2 Comments

Friday’s thrilling adventure at Borough Hall ended as so many days do. So excited to tell her story, so amazed by her experience I thought she’d be on the phone all night.

But as we walked up the street to the parking lot she whimpered. “My knee. The old pain. How could it still hurt with the Celebrex?”

Good question, I mused, as I tossed her a cursory answer about the weather, and people’s joint’s aching.

I left out the part about how MOST of those achy people are at LEAST 40 – not 10. But she knows that already. Can’t put much by her.

We headed home, but as things often do here the downward spiral had begun, and it was a quick one.

I soaked her sore knee in an epsom salt bath for some relief, but the migraine that she had been battling all through school was starting to win.

By about 7:20 she told me she was going to bed. Never a good sign.

No fever. No signs of “illness,” but we are frustratingly used to this. There is nothing tangible that any doctor can seem to figure out as to where all this pain comes from. Yet it does. All over. It’s real. It’s torturous to watch, and it frustrates the free-spirited agile athlete trapped in this painful body.

She woke around 9:30 this morning. I was already at the bank. The text simply said “headache.” My husband is a man of few words.

When I got home at 11 to take her to her 12:00 appointment she was in a dark bedroom moaning in pain while Felix rubbed her head.

We tried some saline, some food, her morning pills. No success. No appointment.

I ran to the party we planned to attend as a family, to wish one of our favorite 5 year-olds a Happy Birthday.

I woke her at 2:30 like she asked. The CYO meet was at 4. The highlight of her week.

We tried a warm shower. More saline.

“I just can’t do it,” she half whispered, half screamed. “WHAT IS THE MATTER WITH ME?”

My stomach sank. That was the proof positive that things were not improving. She looks forward to every one of those meets.

After reassuring her that it’s nothing she’s done, or does… she told me to text her coach and tell him she was really sorry.

And she was.

Another fun event missed. Another pleasure lost.

My 10-year-old amazes, impresses and consoles me, as she says, “Cowden’s may have won the battle today – but it won’t win the war.”

She spent the better part of the day in her bed – willing away the body pain and the headache.

She doesn’t want to feel like this. And I have to tell you – she handles it pretty damned gracefully.

No one she met yesterday would have believed this was the same kid. From a full on powerhouse of a conversation with a respected elected official, to barely being able to lift her head.

That’s how we roll here.

That’s where her sense of urgency comes from. She NEEDS people to know the real deal. Whether they want to or not.

It’s 2:30 AM Sunday. They have been resting for hours. I had to sort out the banking mess and the subsequent paperwork it generated this week. I needed a new list.

See my mind is so often preoccupied that I forget… a lot.

Because deep in my nagging Mommy gut, I feel like there is more. We are missing something. And I hope its minor. Or that I am wrong.

No one can explain all this pain. And lots of people have had the chance to try.

People wonder how I stay so organized, or why. I think it’s because I spend a lot of time waiting for the other shoe to drop.

I’m over making plans. I get it. We can try to commit to things in advance, but our acceptances will always be tentative. We have to make our decisions in the moment.

The win/loss column waffles sometimes, but we will by the grace of God, the power of prayer, and our love for each other, come out on top. Failure is not an option.

We are BEATINGCOWDENS. We will!

“A Friend in Borough Hall”

Published on March 28, 2014 by beatingcowdens7 Comments

Meghan received a special invitation a few weeks back. She kept quiet about it – even though she was bursting at the seems.

On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo. They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.

More about their meeting here:

https://beatingcowdens.com/2014/02/27/rare-disease-day-2014-through-meghans-eyes/

Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”

They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.

And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)

We arrived early, a rarity for us, but this was a REALLY big deal. Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag. She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.

This kid is clearly a "FORCE" to be reckoned with! — This kid is clearly a “FORCE” to be reckoned with!

We were given a tour of the basement and first floors, and showered with some gifts by “AJ.” A giant help, and a generally nice guy.

Meghan and "AJ" our helpful tour guide! — Meghan and “AJ” our helpful tour guide!

Then, it was time.

Meghan and I were greeted with hugs by our warm and extremely genuine Borough President. He repeatedly introduced Meghan as his friend. He told stories of how she inspires him. His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence. They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs. They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.

The NY1 interview was comfortable. She speaks clearly, and flashes an award winning smile.

Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.

He reminded her if she needs anything, she is to contact him directly. And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.

Her eyes brightened. Her goals got larger.

“You can be angry, or you can DO something, So I decided to DO something,” she told the reporter.

And she did.

And she will.

Watch out world.

Thank you Borough President Oddo. Staten Island is in good hands. You are one of the good guys.

Today

Published on March 19, 2014 by beatingcowdens1 Comment

In the spirit of one day at a time… today she feels well.

Today homework is already done.

Today her stress level is low.

Today she swims in the water like the fish she longs to be.

Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.

Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.

Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.

No one can figure out why the drug works for her, but it does. And I am grateful, but scared all at the same time. The list of medicine grows. The knowledge of Cowden’s Syndrome remains spotty at best.

We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….

One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up. Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.

Sometimes I feel like with all the doctors we see, there is still no one minding the store. We travel between specialists, between symptoms, between surgery and recovery.

The blood for the thyroid won’t be drawn for a month. She slept 14 hours Friday night and another 12 Saturday night. No major plans for us for a while.

The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.

Sometimes I like to play mind games, and forget about Cowden’s all together. I daydream a bit…

And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be. Like that ‘ever changing puzzle” my Dad used to tell me about.

And I think of my friends and family. They are contending with diagnoses new and old. None of them fun. I would never say to them that experience shapes who we are. That is a personal belief that the wrong person just might deck me for.

Especially on my heart is my internet friend from Australia. Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.

Today. Today my girl feels good.

Today I will do as I have been taught and let tomorrow worry about itself.

Today we are BEATINGCOWDENS!

And the body says… SLOW DOWN!

Published on February 23, 2014 by beatingcowdens5 Comments

So it’s almost 2 AM on Sunday. And I have to say, I didn’t see this one coming.

This is the part where I remind people over and over that just because you CAN live without a body part, doesn’t mean your body doesn’t miss it when its gone. I mean we were made in one piece…

So the recovery was going pretty well, but that’s mostly due to her feisty determination.

But there is a point where you look back over the last 9 days and consider a few major things. That point came at about 4, and 5 , and 6 this afternoon as she was violently and quickly vomiting herself into dehydration.

If you consider that there was the stress and worry of HOW we were going to get to the surgery, then the brief pleasant stay at Ronald McDonald House, followed by a 4 hour surgical delay, coupled with a less than smooth hospital stay that had its share of communication issues… you start to get a sense of the stress that has been this February “vacation.”

Sorry we didn't send a post card, but it was a blast ... — Sorry we didn’t send a post card, but it was a blast …

Really it extends way farther back than that… but rather than bore you again with all the back story I’ll stay current.

So on the 13th the thyroid came out. It was a three hour procedure with lots of general anesthesia junk for my pretty organic girl. Then there was the whole removing an actual PART of her body. And then there was the introduction of the synthetic replacement hormone. And there was lots of fidgeting with calcium levels. And there were narcotic pain meds for a few days too to keep the edge off.

And at some point around 4 today her body had had enough.

I love when Meghan vomits and people say, “Is she sick?” And I say “nope.” Rarely, (knock on wood – NOW please) does Meghan get a “stomach virus,” but she’s not a stranger to vomiting. She vomits when her body has had enough.

And today, her stomach hurt. Her knees hurt. Her hips hurt. Today I couldn’t keep the pedialyte in cause it all happened so fast. And, since there’s a first time for everything – we actually had to go to the ER for fluids. Except she’s Meghan. And she’s only a bit over a week post op. And they just wanted to be careful… so she’s asleep in the bed. I am typing away as I won’t even attempt to sleep until after the 3 AM meds.

And after the ER was over and we came up to the floor for a bed – in a place we have spent some time before- we passed by the NICU where she started her life in 2003. While I was reflecting I looked at our nurse and thought she looked a little familiar. Once she told me her name I was incredibly grateful I had been kind to her son when he was in my 5th grade class some (AHEM 13 – or more) years ago. You never know when you’ll need Karma on your side…

And now this poor, lovely nurse was left to contend with my daughter, reading package inserts and discussing medications before they were given. Meghan talks a lot. But I didn’t feel guilty about that part (GRIN.)

So the fluids kicked in and she began to perk up. She had time to share with the doctors and the nurse her denim ribbons, her Cowden’s card, AND her movie for RARE Disease Day. They want us to bring them some ribbons for the floor.

Me, I got my nutrients in my – thank goodness I always stuff a meal bar and an EShot into my bag… ALWAYS. That knocked that pounding headache right out.

She bounces back. Quickly. But sometimes a little too well. I have to watch her. Determination can’t do it all. The body has to help too. And as strong and tough as she is, we all need to be reminded that, well she has this RARE Genetic Disorder called PTEN Hamartoma Tumor Syndrome… or Cowden’s Syndrome… and well, even though we may not always want to admit it – that darned syndrome can make life a little extra tricky.

Recovery – phase 3 = HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Published on February 15, 2014February 15, 2014 by beatingcowdens5 Comments

At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.

That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.

Because sometimes you need to sleep, and think carefully before you type.

The surgery went smoothly. The surgeon did a fine job, and so did his team. It was not their fault we were delayed by hours. Someone else’s baby needed their attention. And I can respect that. He followed up personally, listened to Meghan, was cautious but not paranoid. His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.

Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together. Things on her skin – even band-aids annoy her. This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.

But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.” By the early afternoon she looked better. The surgeon said to watch her till 5. A fair number considering she didn’t hit recovery until 7 PM the night before. If she was still good at 5 PM he would clear her to go.

And then there was endocrinology. Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.

When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function. That being said, even when they aren’t damaged, they are often traumatized for a bit. Low blood calcium is OK for a few hours, but not a few days. Like everything else, the body needs all things working together for smooth operation. Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover. They had to just see if it tanked out. The decisions for her post op supplementation would be made based on these blood results.

So, she had blood drawn at midnight after surgery. Then there was the draw at 1 AM for blood sugar. Then there was a draw at noon. Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw. I insisted that was not the case. Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.

Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw. I waited until 8PM and started hunting down results. I was told that the ionized calcium had dropped from 4.8 to 4.3. I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3, Apparently the 6PM draw held at 4.3 There were two other tests, and I wanted the numbers.

Run around. Run around. Run around. Finally after much work and some heated conversations we got the numbers from the other 6:45 tests. The calcium held their own, indicating a drop off to be unlikely.

Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw. Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week. NOTHING overnight.

Now it was after 10.

The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium. At least I was able to respect that she apologized right to my daughter for muddying up the entire process and raising her anxiety.

The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.

The passing of the buck that took place around the endocrinology department – disgusting.

And this is the clean version.

Facilities. Doctors. People. Can rest on reputations previously earned. And then one feeds into another and that reputation carries them – sometimes too far.

We have been there, and done that. And we are far from done. So loyalty lies in individual treatment and care by individual doctors and nurses. There is no one perfect facility. There is no one perfect place. Not even in Manhattan.

We gathered our things quickly.

We were in the car at 10:45PM.

My wise daughter asked what the lesson learned.

I said,”Trust your Mom.”

My husband said, “Educate yourself. Advocate for yourself.”

I guess we are both right.

The ride home was tough. Painful. You use your neck for an awful lot of things.

But we got home in time to give her a well deserved Valentine’s Day Gift

She certainly is our Hero. And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night. Especially the one to “Trust your Mother.” For now I can be the advocate. She has to find some time to be the kid.

Valentine's Day 2004 - our first hospital stay. — Valentine’s Day 2004 – our first hospital stay.

Valentine's Day 10 years later... — Valentine’s Day 10 years later…

These three remain….

Published on February 13, 2014February 13, 2014 by beatingcowdens12 Comments

She walked away today. She broke the rules. She updated the plan. On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses. The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.

That didn’t last long… You only get a moment or two to pull it together. Then there was some really rotten cafeteria food, and WAITING.

They took her in at 3. Three and a half hours after she was scheduled. She was tired, and hungry. And more grown up than I am at 3 PM when I haven’t eaten.

What a whirlwind! Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed. Stupid Cowden’s Syndrome. Makes people quick to pull out whatever seems to be misbehaving. And (SIGH) they are usually right.

So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while. I thought there was no way it could stand in the way. The surgery was scheduled. She was ready. The throat clearing has reached epic levels.

Faith.

Faith that it was going to be fine. Initially faith that the storm would pass. Faith that we would arrive on time to an early surgery Thursday morning.

Then, as happens so often I was reminded that FAITH, is not about me. It’s not about my terms, or my time, or my way. FAITH is knowing, trusting, believing. that God will provide what we need. Whether it fits my plan or not.

So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.

HOPE

So much talk about HOPE this month. Rare Disease Day, and “HOPE – It’s in our genes.” Hope became necessary. The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in. (HEY, I never claimed to be perfect!)

Back and forth to the surgical team, to the social worker, the secretaries. Pleading. Help us. Hotel rooms that were available running several hundred dollars. Offers from loving people to pay the bill. But in the end money wouldn’t have stopped us. We would have paid whatever we needed. Because we had to be here. Right here. Right now.

So finally around 2 O’Clock on Weds. the call came. “We can put you up at the Ronald McDonald House for the night.” The fee – incredibly reasonable. The location- perfect. The reality – it was time to pack us up and be out of the house by 8.

Packing to take Meghan away is an adventure. It’s not the electronics, or the “stuff” but rather the food. Not even a major hospital can safely prepare Gluten, Dairy, Soy free food. So there has to be a cooler. Dad made fried chicken and plantains. I picked up a pound of a Boar’s Head staple. Cookies, granola, ginger ale, and other necessities. Showers for all. And Grandpa picked us up at 8.

We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time. I have to admit I was worried. Really worried about what I would find through the doors. But what I found was… love.

I had heard of “The Ronald McDonald House- The house that love built.” But I never gave it any thought.

I have a new charity on my favorite list.

We were welcomed – almost embraced by love and kindness. There was a nonjudgmental compassion the radiated out of every staff member. We were given keys to our rooms, and a tour with the rules of the “house.” We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room. And, after she was given a backpack – with a special monkey, and a monkey blanket.

And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket. Her grateful smile. My heart – full of love in this house.

Our room was on the 11th floor. Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic. And there was the most beautiful view.

And as we each found our way last night into our own level of sleep, there was LOVE. Everywhere in the room.

We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.

View out the window on this "Beautiful Day" — View out the window on this “Beautiful Day”

Waiting for surgery with the new monkey from the bag last night!

By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.

A beautiful chaplain met us this morning, and clearly spoke Meghan’s language. She compared God to a loyal dog… always there – forever understanding of our needs.

The doctors took extra time with someone else’s baby this morning. I am glad they have that level of compassion. I am glad they take their time.

Now they need to take their time with mine.

The last status update came 15 minutes ago. They only began around 3:40. Prep took a while. She is stable, but its slow going. What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules? Why make it easy.

Thankfully – she has some very special guardian angels on the case today. And the prayers of countless others.

In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”

More to follow as soon as I can…

Hope…

Published on January 29, 2014 by beatingcowdens1 Comment

“Hope” is the thing with feathers

“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

Emily Dickinson

Lots of talk about HOPE this month, as RARE DISEASE DAY approaches. The phrase “Hope, It’s in our Genes” has become one my family relies on when we struggle. Hope is complicated. Or its simple. I guess it depends on how you look at it. Regardless, its necessary- for all people at all times.

I can not imagine living my own life devoid of HOPE. FAITH and HOPE work hand in hand here, and at our most desperate hours one is always there to shine a light in the darkness. I am convinced HOPE is there, even in the darkest hours. When we look. Here’s what HOPE looks like at our house.

HOPE is the kiss of a dog when the tears just won’t stop.

HOPE is a hug, or an,” I love you.”

HOPE is an EMail or a text, or a phone call at just the right time, from the person you’d never expect.

HOPE is believing that it’s all going to be OK. Somehow – some way.

HOPE is pain relief, even if it’s fleeting.

HOPE is quality Physical Therapy.

HOPE is the friends, (and the people we barely know) who “Care about RARE” because of us.

HOPE is an answered letter from someone you’ve never met, whose willing to help – just because.

HOPE is laughter.

HOPE is medicine that works.

HOPE is butterfly kisses.

HOPE is the internet, and connections to old and new friends.

HOPE is family.

HOPE is knowing you’re not alone – ever.

HOPE is when that special thing you thought was lost forever… shows up out of nowhere.

HOPE is believing that the surgeon will have the right answer.

HOPE is confidence that you are doing the best you can.

HOPE is real.

HOPE is love.

HOPE – It’s in our Genes!

WHAT IS HOPE to you?

Getting out of my own way…

Published on January 23, 2014January 23, 2014 by beatingcowdens1 Comment

I am actively, consciously, deliberately, trying to get out of my own way.

I have hopes, goals, dreams, aspirations. I love my daughter, my husband and God and my family and friends.

I want to be stellar mom, an outstanding wife, and a good friend.

I want to be a Christian woman who leads by example.

I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.

I want to teach people about health and wealth and how they can go hand in hand.

But I am stuck.

Right in the middle of my own way.

We had Meghan to the neurologist today. We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan. It took an hour and a half. I just about worked myself into a migraine on the way.

But, fortunately, the torturous migraines of the fall are a memory. Controlled by a medication I would rather her not take. Today we got a dose increase, and something to help her sleep. It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness. HA! Not here. There’s my Meg… doing it her own way.

This was an easy appointment. We were home by 5:30 although wiped out by the journey – all of us. The follow-up is in a few months, the new script is in hand.

They are asleep.

I am sitting at the computer. Thinking. Researching. Typing. Organizing. Planning. Attacking everything. Accomplishing – not so much.

Today I called to reschedule the thyroid surgical consultation. Suddenly 5 weeks seems like a really long time. The tickle in the throat is troublesome. It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter. I try to ignore the reality that we both know exists. I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.

“It’s not sore till I cough. It just feels weird – right here.”

And there on the right side of the thyroid is what has begun to feel like a small stone. I try not to let my imagination get the best of me as I picture it pushing on her windpipe.

“It’s fine,” I tell her. “We’ll just get the doctor to take a quick look.”

She’s not dumb. Not by any means. And that is a good deal of the problem. Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet. Now the monster is real. And it gives real life nightmares.

So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon. No one can be sure what he will say. And I am not sure there is a statement he will make that will soothe me or make me happy.

And the waiting game continues. One appointment down. Two weeks till the next. Then on the 11th I have 3 and she has one. I still haven’t figured if its better to consolidate or spread them out. They just keep coming. One after another…

“Beatingcowdens” will suck out your energy if you let it.

But I won’t. That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix. Recently they named their 100th millionaire. A school guidance counselor from NJ with no network marketing experience. We three start every day with our shakes. We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep. We are feeling better and better. So in the time I have at night, I listen to podcasts, I learn all I can. And I try to share with my family and friends that I am finally not that sickly little girl they knew. I try to share with them the health and wellness opportunities, and the vision for financial freedom. I am here. I am ready. If they will listen.

And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades. Trying every moment to be the best I can be.

As I sort through the last boxes from Dad’s apartment. And I laugh, and I smile, and I cry. As I make binders of beautiful 8×10 prints I found everywhere. As I sort through the photos on CD and prepare hard drives for my brother and sister. And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly. Not a saint, but who is? And so much wiser than any of us really gave him credit for.

And I make list after list of the things I need to do. In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.

I think about my friends who I love. The ones I never call, or barely talk to. The ones who I text instead of calling or visiting. I think of how busy our lives are… and for what?

Rare Disease Day is coming. February 28th. Our school is celebrating. Meghan is thrilled. There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.” It gives purpose. Hope. A distraction.

Somewhere in the midst of all this I have to stop and wonder. How do people do it?

Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities. Over run. Overworked. Exhausted. Worried.

How do they get out of their own way? How do they manage to keep the balance of friendships and “play dates” for adults and kids? How do they get the laundry and the grocery shopping done, and still find time to play?

I think I am a pretty organized Mom. But yet – I need to use my time better. I won’t part with my writing. That’s therapy for me.

I’ve minimized the clutter in my house (just don’t look in the closets.) Now its time to minimize the clutter in my head.

Cowden’s Syndrome Awareness