At the very end of school I received this gift from a 4th grade student of mine. I think it is probably one of my favorite gifts in my 17 years teaching. Small and delicate, yet tough and determined. Not much for collecting things, but this was a keeper.
Meghan continues to battle her way through the pain of recovery. She rests and reads and watches TV to pass the time. She is tolerating the pain a bit better, although the reality there was a scalpel scraping scar tissue off the ligament and nerve in the center of her palm is not lost on her every few hours as the medication starts to wear off.
The day we came home I explained to her (again) about how Cowden’s Syndrome likes to “overgrow” things. We talked about “hyper-healing,” and her body’s desire to overproduce cells to try and solve a trauma. That is a crude explanation of our tumor growth. That same crude explanation can be used to explain why some Cowden’s patients have a prevalence of scar tissue. Every time there is a surgery, or an injury the body over works, and sometimes the result can be just as bad as the original problem.
Overcoming impossible odds. I like the way that sounds. The overcoming part, that is.
So, we talked about range of motion and the need to keep on moving those fingers so the scar tissue doesn’t form and stiffen things up. She knows she will need therapy. She is used to that. She did not like the thought that her range of motion could be affected permanently if she didn’t move.
With raw determination she wiggles her fingers. Several times an hour I watch her wince in pain. No one tells her to. She just knows she has to, and she doesn’t like the thought of the alternative.
See its all about the swimming. Her sport. Her niche. Her comfort zone. Nothing will keep her out of the water for long.
The pain exhausts her. She has circles under her eyes, not from doing much other than being in pain. But for those of you who live with chronic pain – you know that it wipes you out. So she sleeps. 13 hours when she can. Better for the healing I am sure.
When I was dusting this afternoon I came across my friend Penelope Pig, and I thought of how relevant she is.
I thought of all the times in my young life I uttered sarcastically the phrase, “When pigs fly!”
I thought of my arrogance and how little I knew about the important things on life – the things worth fighting for.
I realized in all its ridiculousness, it can actually be a poignant phrase.
I’m going to let this surgery stand in my way – WHEN PIGS FLY!
I’m going to stop swimming – WHEN PIGS FLY!
It fits for so many things in life.
So many other things on my mind. So many thoughts all garbled up inside.
Sometimes I feel like we are running on raw nerve, on sheer will and determination.
We should be professionals around here. We should just get up, get going and move on.
But we are human.
We hurt, inside and out.
We get tired, and lonely.
We understand the tired and lonely that others have too – but some days it doesn’t make ours better.
Some days its hard to look at things from someone else’s point of view.
And that’s OK.
This one is a favorite of a dear internet friend 🙂
Meghan is full of exhaustion and pain and conflicting emotions.
It’s annoying to realize you blew your whole summer at doctors and in surgery.
Thankfully we snuck in that Disney trip.
I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.
She has a smaller network. Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.
Yet, she is my hero. And my rockstar.
I shuffled her around these last few days a lot more than I wanted to. But, she likes to stay close by me when she is hurting.
So yesterday we picked up the car. Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust. He declared my car “not broken.” Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.
It’s definitely still broken. On to the arbitration with the Better Business Bureau. Just in case someone thought we might rest. No worries. Gloves are on.
She went with Felix and I for our physicals last night.
Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records. (Really WHAT was I thinking staying close to home for a doctor?)
She is tired. But she smiles. And she hugs us. And she asks for pain medicine. And she wiggles her fingers. And she looks at her pool, and the calendar, and she feels the inevitable.
I can’t stop it. No one can.
So we keep busy. We rest. I stay close by. We giggle and make jokes. If I had to “lose” a summer, I couldn’t have lost it with a better young lady!
Since before she could talk we have been working to help this kid become more aware of her body. She can troubleshoot what works for her. She can tell me what foods and medicines help her or hurt her. Every day she becomes more keenly in tune with herself. Its necessary. That is how we keep her healthy.
My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions. Those are the situations where doctors might miss something- even if they are trying. Those poor children might suffer needlessly if no one can determine the source of their discomfort.
But not Meghan. If you will listen. She will tell you. If you pay attention. You will understand.
If she hurts- the whole world might know. If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.
That’s it. Plain and simple.
So when she hurt her hand June 4th, I kept waiting for it to get better.
I played tough for a few days, but it still hurt.
Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.
And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon. Each one finding a reason to dismiss her, and this pain that persisted.
Pain doesn’t persist. Not like this. Not with her.
And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated. You never know where those tumors may grow.
But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)
And, Meghan calmly told the vascular surgeon she thought it was an AVM. He said no.
As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.
You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.
“Look at this,” she said to me. “It has its own blood supply. That’s why it stops hurting when she puts pressure on that mass. She is cutting off the blood supply.”
Meghan would smile, knowing she was understood – at least by someone.
“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost mutter to herself.
And I knew if they were BOTH sure, then I was sure they were right.
I emailed her oncologist, and her genetecist. I sent them pictures. “Biopsy those,” I was told in no uncertain terms.
So Dr. Jill wrote a detailed professional letter to a local orthopedist. I am still not sure he understood all the words.
Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered. The MRI report was negative, his Xray was negative, and there was this bump below her middle finger. He sent us away – apologizing for not helping, but convinced there was no need for surgery.
That was the day Meghan coined the phrase “Donkey Butts!” And I couldn’t blame her.
I went right home from that visit and sent a desperate EMail to the oncologist again. This time I asked for a referral.
She is a woman of few words. Her reply was a link, and the words “Go here.”
So, I called and made an appointment. They took our out of network benefits. We got in the day before vacation.
He looked at Meghan. He talked to her. He sent her for more Xrays. They were negative. Then he looked at her hand again. He told her that he knows all about kids and how well they know their bodies. He told us he treats a few boys who grow bone instead of soft tissue tumors. He told her that the boys ALWAYS know where the problems are. She brightened.
Then he drew a very logical picture of the hand, and traced out the main ligament and tendon. He showed the connection from the soft tissue tumor to the painful wrist spot. He let her feel it, and he told her she made sense. She smiled a huge smile.
Finally a doctor who DIDN’T remind me of this one!
The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads. Clearly the tumor on her hand was causing trouble. Clearly it had to come out. Exactly what that would mean once he got in there would have to remain to be seen. Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.
Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand. Chronic pain is absolutely exhausting.
Today was the surgery.
We went to a LOVELY outpatient facility on 42nd Street. The place was clean, the reception was smooth and effortless.
The nurses were darling, every one of them.
The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.
The procedure lasted longer than I expected – almost an hour and a half.
I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”
A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!
So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,” and “THANK GOD FOR DR. JILL!”
I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done. I was also instantly tossed into a new level of worry. See, all along they have been insisting the AVM in the knee was an isolated incident. I shouldn’t worry about more cropping up. Well one just cropped up. Game changer.
I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it. Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM. The soft tissue tumor erupted some time later.
While the exact sequence of events doesn’t matter, a few things do.
Meghan and Dr. Jill are really intuitive.
AVMs can take place in multiple spots.
Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.
Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.
I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.
No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.
And boy have we had practice!
This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.
This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.
As long as…
Well now we fidget and pray and keep busy. There will be time for the rest.
A short time before we headed to Disney, I wrote about taking out Meghan’s push chair for an appointment in Manhattan. She was terribly bothered by the rude stares that greeted us that day.
As a result we talked, a lot. And, like she always does – she comes through those conversations blowing my mind with her introspective maturity.
Don’t misunderstand me. I sometimes worry that my 10 year old is such a deep thinker. I am acutely aware that she has way more on her plate than she should, and she handles with grace and poise a life that would leave many adults weeping under their covers. I wish she told me everything. I know she doesn’t. My heart often breaks for the burdens she carries.
Yet, she is just so amazing.
After we spoke about the rude “starers” she talked about wanting to have a way to let them know about Cowden’s Syndrome. She wanted to raise awareness.
This card was created out of her need to “teach” others about Cowden’s Syndrome.
So she gave her ideas to Daddy and he created this card. We used the logo from the “Global Genes Project,” an organization that has been dear to Meghan since her diagnosis. http://globalgenes.org/
Meghan wears proudly the denim ribbon created for her by a family friend when she expressed a desire to have a ribbon. something she could wear that would represent her.
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”
She dreams of one day seeing another child wearing this symbol. She wants it to become as common as the “pink ribbon.” Because, there are about 7,000 rare diseases, and 1 in every 10 people is affected by one. Many of these diseases are genetic. As we learn more about other rare diseases, Meghan understands the need for the rare disease community to unite. So little research is done on so many of these diseases that they remain poorly understood and under funded.
As we packed for the trip – Meghan asked if we could print some of the business cards for her to bring to Disney. She wanted to be able to hand them out. She knew people from all over the world visit Disney, so it would be a great place to spread the word. 500 cards later, I made sure she had all the tools she needed.
What happened next was just another example of how easy it is to be proud to be her mother.
Meghan decided that instead of getting an autograph book this year, she would take pictures with the Disney characters with her cards.
She also spontaneously struck up conversations with complete strangers all over the parks. She would approach cast members, wait staff, photographers, and guests. She spoke to people from the US and well beyond.
And every time she spoke my heart smiled.
She is an incredibly articulate young lady. She explained Cowden’s Syndrome through the eyes of a ten year old to almost 200 people.
Some of the most memorable included a man and his wife and their service dog on the bus to Downtown Disney, and a helpful cast member from Puerto Rico outside the fitting room as she tried on her Merida dress, and a Disney Photopass photographer whose genuine hug was so heartwarming.
Those were just a few. She spoke to so many people over the course of our 9 day trip that I have no doubt there is a greater awareness of Cowden’s Syndrome in the world than there was just 2 weeks ago.
She will tell you she is not a public speaker.
She might even try to tell you she is shy.
I will tell you she is flat out amazing, and that she is going to do already doing great things.
This child will make the world more aware – one card, and one conversation at a time.
These are Just a few who learned something new this week!
This has been quite a year, for our whole family- but if I am honest, especially Meghan.
This year in January we had the “Santa Claus” chat. And, as careful as I was – I was devastated when some of the magic left her that day.
During this last year, she lost my grandfather, her GGPa. and had her first close encounter with deep loss. Last October when GiGi fell she saw a fragile side of two of the strongest people in her life. She has watched Grandma- my Mom – look after HER Mom, and she thinks- and she worries. Then just a few short weeks ago GGMa had heart surgery. And we have had so many discussions about life these weeks, your head would spin, and your ears might bleed.
That doesn’t even bring into question her own medical issues. This child spent just about every single day- from the day school let out- at a medical appointment. Many if them were routine follow ups. Many others addressed new problems and concerns and left us with more unanswered questions. And all of this – that began literally the day after school ended, will culminate August 20th with hand surgery. This has been the summer.. Well…
So she has been preparing her answers when people ask her how her summer was. Before we even left for Disney she had decided she would tell them; “I love my new swim team, and Disney was great!”
She is smart enough to know most people will not REALLY want to hear what e transpired this summer, and she hates to lie- so we found a happy medium!
That’s because Disney always has been great. But the first few days this year were a little rough. She was struggling, and when we finally got her to talk she explained that she hoped the trip would erase a horrendous July. It didn’t. She was literally expecting the “Magic” to whisk it away.
Then there was that problem with the “magic.”
See for the first time – with the realization that Santa wasn’t who she expected- came the realization that, well, Mickey, and Goofy, and Donald- well you get the idea.
Maybe its fortunate she was too exhausted too much during this trip, so we had lots of time to talk. And, somewhere around the third day she caught on.
That MAGIC- it’s yours. Inside. No one can take it. Sickness, sadness, illness, doctors, surgeries, Cowdens syndrome- nothing!
The magic is there for you if only you believe. THAT is the wonder of Disney. THAT is what keeps us coming back.
The 2013 theme is “Believe in the Magic.”
She gets it. We all do. You have to believe…
Much more about this trip when I am back on my real computer!
That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,
I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.
Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.
Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.
And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!
Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?
And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?
And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.
I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.
Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.
We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.
It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.
But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.
We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.
And yet, “Mom I just don’t feel right.”
My heart sinks.
I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.
There is no fever. Maybe her Dad is right. Maybe I worry too much.
But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!
Or, maybe I remember too much. Or maybe I know her too well.
Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.
We want what’s best for them. We want to help them. They are our lives, our air, our breath.
I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?
Those are the words that come to mind every time someone asks me to describe Cowden’s Syndrome.
Most people, even most doctors, understandably, have never heard of it before.
With an occurrence of 1 in 200,000 that is not a surprise.
There is always hope…
What is a surprise is on days like today, where the sun shines a bit brighter. The traffic is a little lighter. Daddy is home on vacation. And, we met a doctor who had heard of Cowden’s, understands it, and is compassionate, likable, and easy to talk to. Yep, imagine that? A POSITIVE experience!! 🙂
We saw an NYU affiliated hand surgeon today. I am sure God heard the chorus of prayers storming Heaven for an answer for this kid, and today He delivered.
We were early for our appointment and waited in an uncrowded waiting room, while a pleasant receptionist organized the paperwork.
We were taken promptly at our scheduled time. We met with a friendly, competent PA. She had the hands Xrayed. The doctor was in the room 10 minutes later and immediately had Meghan on his side when he started to talk about two of her favorite things – Disney and swimming.
He examined her hand. He easily recognized the soft tissue tumor that is typical in Cowden’s Syndrome. He told her stories of another young boy he treats with a rare disease who grows bone instead of tissue. He validated her. He was confident. He drew a picture, and explained why that tumor was causing pain.
With every word he spoke her smile grew. The hope went back into her eyes. She waited anxiously for him to tell her he was going to take it out.
She almost leaped up and cheered.
August 20th in the early morning hours. my then 10 year old will prepare for her 10th surgery.
That’s how you know a kid is at her wits end. When surgery is an exciting option.
He told her it wasn’t going to be better right away. He asked if the PT from the letter we showed him (you know – the PT who had it right ALL ALONG! 🙂 could rehab her hand. I told him I was quite sure she could, but I would ask. (Actually – I have no DOUBT she can do anything. Dr. Jill NEVER gives up on Meghan!)
He said the pain may be worse for a bit after he “messes around” in there, but that gradually she will feel the pain lift and the range of motion return. I wanted to hug him.
All it takes is someone who “Gets it.”
We all want to be validated. As adults we often struggle to have our concerns made valid by those we love. When you have a rare disease, where the symptoms are often invisible, you struggle to be taken seriously. People are quick to pass judgement.
She looks fine, why can’t she walk? She must be lazy.
She is complaining again? Attention seeking,
So when you are just trying to have your voice heard, at the same time that you are trying to find your voice -life can feel extra challenging.
Cowden’s Syndrome is a struggle. We are buoyed by the fact that we have each other. I have Meghan as my inspiration, and she has me as her advocate.
I will NEVER give up. She will continue to get the care she needs. She will continue to see doctors who validate her. She will continue to inform an under informed public with her “cards.”
She is my heart and soul, my sunshine. She deserves nothing less.
We can’t change the “Rare.” The “Invisible” or the “Real.” But we can open the eyes and hearts and minds of more and more people every day. Ours is one of so many other Rare Diseases. We are grateful. We are blessed. Even through our pain we have gratitude for our blessings. And we will move forward with our mission of awareness.
And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!
The car isn’t fixed.
We had to take it back to wait for the “Field Tech” to have a look.
Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.
10 days in service and I left with the same broken car, with the same parts as when I dropped it off.
Except that a few “extra” parts were left on my seat and my console.
While we will make an appointment some time next week to leave the car for the “Field Tech,” I had to laugh in spite of myself at the irony of the whole thing.
We have spent the summer at doctors. Some doctors were routine, some were tests and follow ups for things that were not “ok.” While there are many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.
A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.
Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.
Too hopeful? Maybe. But, if I give up hope, where will we end up?
Raw with fatigue. Frustrated by “extra parts” and the people who don’t seem to know what to do with them…
Which ones do we put in? Which ones do we take out?
The similarities are almost uncanny. What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”
I could barely contain my laughter, but by then we needed a good laugh.
We had just left the hand surgeon. The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.
I came as usual, armed with a thick heavy binder, a recent MRICD and reports, a list of all current doctors.
I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger. You know, the one she says helps alleviate the pain when she presses on it?
He said it was “barely there.” Yes, and 2 weeks ago it wasn’t there at all.
He took an Xray. Obviously low radiation, (I hope) because no one left the room.
The bone structure is fine.
Shocker!
And he repeated to me that the MRI was fine. (YEP, I know.)
But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.
I gave the beautifully written letter from our PT. It explained everything so clearly.
Pause… Pause… Obvious think time for the doctor.
“I don’t know what to tell you.”
EXCUSE ME?
” I am sorry I wasted your time.”
That was it. No request that we come back. No suggestion on what to do next. Pay the Copay (AGAIN!) and leave.
So when we got to the car Meghan and I were both agitated. Rightfully so. She is so frustrated. 8 weeks plus, and she doesn’t have the range of motion in her wrist. She was so angry. How is it that these medical professionals keep turning her away with no answers and still in pain?
I told her she was entitled to a fit. She is above that. She got angry for a bit, then frustrated. But I have definitely had many worse fits this summer alone.
Then, she said, “You know what Mom? They are all Donkey Butts! All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”
I spend a good deal of time working with her on appropriate language for a lady. But I almost had to pull over in hysterics from laughing so hard. I think she nailed it – politely and accurately.
beatingcowdens 
