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.
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!
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!
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.
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.
This one is a favorite of a dear internet friend 🙂
This image has been on my mind all week. Truth be told there is an awful lot on my mind, and I apologize that most of it is likely to come out jumbled. When I don’t get to the computer regularly there is all this stream of consciousness stuff…
My girl feels cruddy. And I know, “its a big surgery,” and “it takes time to even things out.” But it really stinks. Her thyroid numbers are way out of whack. The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them. If my thyroid numbers were as wacky as hers you’d be scraping me off the floor. Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too. Good thing I live in a big city. I might well run out of doctors otherwise.
It is so hard to watch her – feeling betrayed by her own body.
She is bright. And kind. And super rational. She gets the whole idea that people have it worse. She is grounded.
But sometimes she is 10. And she doesn’t understand why she can’t keep up. Cognitively she can dance. But physically…
She has to decide on a Friday if we are busy on Saturday morning. This way she knows if she can play gym. She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover. She played last week. She had the time of her life. Good thing the school staff doesn’t have to watch her get out of bed on Saturday.
And running. How she LOVES to run. And she’s fast. But she can’t. Not for long anyway. Tendonitis, inflammation. And forget it this week as we TRIED to lower the Celebrex.
Never mind the swimming. She belongs to a team that practices 4 times a week. On a good week we get there twice. Not for lack of trying, but exhaustion gets in the way. It is CYO season now, so she is with a more recreational team too. Some fun times. But she wants to be faster. And she could be. But her body betrays her. And it makes her angry.
And now the headache. The migraine returned 2 days ago despite the recent medication increase. She is just so very tired. The neurologist called me tonight. Increase the Celebrex. See if that helps. So much for less medicine. Let’s pray for relief.
I think alot about the others. I think about the other’s with RARE Diseases. I think about the ones less fortunate than us.
I also think about the other’s with Cowden’s Syndrome. I have never met them – any of them except my own girl. But, we “know” quite a few. There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers. We share experiences and ideas, and successes and disappointments. We toss things out to each other before the rest of the world. We speak safely to people who “get it.” And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.
I often go to bed and wake worried about these people I’ve never met. I think about their physical struggles, and their family struggles. I pray for them when they have tests, and surgeries, and they do the same for us. People could argue they aren’t “real” friends. I would have to disagree. They give me hope.
I
Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter. And inside the package are jeans for Meghan and I. Carefully sewn on each rear pocket is the denim ribbon symbol. Also in the package was a bag “Hope, It’s in our Genes.” Yep. It sure is. A friend of my sister’s. Inspired my some crazy words she’s read here. Go figure. Grateful.
And there are the events coming up. The fifth grade events. The ones where she will try her best to fit in. The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance. The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food. Just another way to feel different. But she plugs along. Keeps that smile. stays focused on the good as best she can. Because she is acutely aware that there is a lot of good. And painfully aware that things are fleeting.
We miss my father. It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world. There is a glitch in each direction. No major problems. Always just a series of minor ones. He may not have been always around, but the time he was was powerful. Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others. But I do, we do what we can to keep his memory alive. We talk about reality, and we keep our most special missions close to our hearts.
There should be sunshine and roses. But there isn’t. Well maybe there is… if we look hard enough. All I seem to hear are stories of tragedy, heartache and pain. In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness. I don’t profess to know the grand plan. Not for a moment. And I am sure its better that way. I have only learned to find the blessings I can in whatever I can, as frequently as I can. That is what keeps me sane.
I am far from perfect at this. FAR from perfect. But I – like all of us, am a work in progress. So as the days sometimes seem insurmountable… I remind myself, and my girl – that we have to follow Dory’s advice…
Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her. She was so thrilled by his genuine nature, and his true interest in her. Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!
Meghan chatting with Borough President Oddo!
Today, Meghan addressed the school about what it was like to live with a Rare Disease. She spoke eloquently and passionately. The students were phenomenal. She was exceptionally BRAVE.
This is her speech.
Living with Cowden’s Syndrome
Every day I have pain. Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure.
Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide. Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease. There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments. Treatments and surgeries can be helpful, but they don’t fix the problem permanently. Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.
We chose the movie BRAVE for tonight’s movie night on purpose. When you have a Rare Disease you have to be brave. Individuality is very important. No matter who you are, EMBRACE it and be BRAVE. Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE.
Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL. All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE.
Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer. Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin.
I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too. The support I get from my family is incredibly inspiring. I REALLY want to make more people aware, as you can see.
All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.
When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this.
Be KIND, be AWARE, Rare Diseases are EVERYWHERE!
And then – as if I wasn’t proud enough…. she put this video together all by herself….
Such a proud Mom! Spreading the word…. LOVE this kid.
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 …
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.
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 10 years later…
It was almost 11 last night when we were cleared to leave recovery, and taken to a bed on the Peds floor. Dad had to leave to head back home before the next round of snow began. After all, he needed to have a car ready for our (hopeful) Valentine’s Day discharge.
So we settled into a tiny, awkwardly laid out room. trying not to disturb a roomate who likely would have preferred not to be awoken at 11 to share a room with someone she didn’t know.
By that point I might have been a little difficult. (I know that is SHOCKING!)
But as we settled into the room it became apparent that there was no place to walk safely. Some rearrangements were made, and the reality that she couldn’t possibly see the TV was softened by Amazon Prime (on demand) on the laptop.
She was hungry. At this point she was close to 24 hours with no food. I try not to let her go four hours. Her stomach needs constant gentle reminders it hasn’t been forgotten to keep it from getting angry. They said soft and clear. We tried apple juice. Then they offered an italian ice with soy protein. Not so much. Another juice I was told. And I should have trusted myself.
Soon after came the familiar green face from the child with a body full of toxic anesthesia crap, AND apple juice – which just isn’t on her list of beverages.
She is always my angel girl. Even post op – she got herself to the pail before her body forcefully removed its toxic contents.
I took the opportunity to change the gown and bed sheets, because – why not? And by midnight she was on my laptop watching “The Hunger Games.”
They said clear liquid. I said ginger ale and gluten free pretzels. I win because I don’t ask. And she started to perk up.
Pain medicine in place, she enjoyed the movie. Except the blood draw. Which fortunately was through the IV. Then again an hour later. (Good thing she wasn’t asleep) only to find out her blood sugar was crazy out of whack. The finger stick brought it into a much more normal range. Thank goodness!
By 2:30 there were actually 5 uninterrupted hours of sleep for my exhausted girl.
She awoke at 7:30 immediately remembering the pain of having your throat slit open, and a small lumpy organ removed. Today things were more stiff. All the local anesthesia gone. She was hurting. And its a hurt I remember. So it broke my heart worse. You never realize how many things you use your neck for, until…
Brave girl. Held it together. Had some more of her pretzels and ginger ale, and even some of her chicken breast I brought.
We wheeled and dealed and got her to agree to a nap after her second movie. And so she rests now.
Calcium levels keep us here. Wondering and working to determine parathyroid damage. The synthroid has begun.
The doctor will set us up with restrictions, rules, and orders. When he’s able.
For now our chart reads “Pending Discharge.”
We are ready, and I am behaving…. I promise.
Ten years ago we spent Valentine’s Day in the hospital. And here we are again. What a decade. It’s not glamorous by any means – but I am still with the loves of my life, and that makes me a lucky gal.
Trying to distract the pain away.Me and one of my Valentines!
I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work. We race to take our children to the many places they need to be. We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.
In our house we race. Gratefully, we have added something fun in the form of Swim Team this year. There are many weeks there is even time for two practices. So she won’t be an Olympian. But some fun is an improvement.
Because without that Swim Team – it was all medical – all the time.
Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York. And they all require regular check ups…
“Skip it…” whispers the voice inside your head. “I don’t have time…” “We won’t make practice…”
But “skipping it” is not a luxury we can afford. Cowden’s Syndrome has robbed us of the luxury of putting it off. It is the clock that is always running. It is the reality of my breast cancer – beaten. It is the “reminder” in my iphone. It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.
And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks. Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.
There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few. Some are once a year. Most are twice. And that’s all well and good if everything checks out fine. However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….
Last year I tried to get them all done in July. That was pure indescribable hell and it swallowed our whole summer. Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.
And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.
So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in. We often find ourselves racing into an appointment after a long day – only to find ourselves waiting to be seen.
“Hurry up – and wait.”
Meghan is an outstanding “wait-er.” Partially because she’s used to it, and partially because she knows it’s necessary. We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied. But she would rather be playing. Or swimming. Or resting. Or crafting. Or just being a kid.
We find ourselves facing the same problems many other families face – laboring to fit in time for fun. But it is further complicated by fatigue and a lack of stamina. She can not walk more that about 3/4 mile without wiping out. She will, when time allows, sleep 13-14 hours a night. So we have to always be careful not to push too hard, because the repercussions can be serious. Sometimes I imagine friends think we make it up.
“Hurry up – and wait.”
And we raced into Sloan Kettering Cancer Center on December 19th after school. I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.
But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck. The one she feels every time she goes to put her necklace on. The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.
So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned. He asked for a tape measure. His eyes were serious. He spoke of significant growth. He said we needed a biopsy.
“So let’s do it. I am off for 10 days.”
“Well, you know, with the holidays…”
“Let’s hurry up and get it done. I will take whatever you have.”
And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof. The doctor explained that the radiologist doing the FNA needed a recent ultrasound. (You mean like the one I had asked for with the December appointment all along?) I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute. So we did. Ultrasound December 23rd. FNA under general anesthesia on December 31st.
“Hurry up – and wait.”
Apparently no one got the memo things have been a bit stressful around here this month.
So we did the ultrasound on the 23rd. 30 minutes with the tech. Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan. Nothing going on on the 23rd of December. No worries.
“Hey, that’s a lot of nodules on a young lady…” says the doctor. ARGH!
So when do we squeeze in something fun? Something she can say she DID on the vacation?
We made it up to see the New Year’s Eve Ball very early on that Saturday morning. Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month. Trying to find the time to view her world through a camera lens. We spent about an hour. Then we went home.
Grandpa Tom’s “smile”
There were 2 play dates. Lovely girls. So I guess there was success.
And then today.
Arrive at 6:30 I was told. So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.
“Hurry up – and wait.”
We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor. The procedure was at 8:15 and lasted double the time it should have.
We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.
I may have a few cocktails myself as midnight approaches. If I stay awake that long. After all its been a long day, week….
And we know Daddy’s got the New Year’s Eve Ball well taken care of.
I like the word “probably” a lot more when it is favorable. Although sometimes I feel like life is engulfed in ‘probably,’ ‘maybe,’ ‘most likely,’ or ‘I’m not sure.’
Today “probably” means it’s most likely migraines causing her agony.
And with some explanation that migraines can level even the strongest adults, she started to feel a bit better.
There was a thorough exam, and a kind, intelligent neurologist. He knew what Cowden’s Syndrome was, complimented my list of doctors, and even called the oncologist to talk about treatment options.
So my girl, whose pain had actually radiated down and into her shoulders was looking finally at an answer.
I understand her cautious suspicion, as things have often not gone according to plan.
However, this diagnosis actually makes sense. And having lived through my share of migraines, it even explains the level of pain.
So he is 90% sure.
Those are good odds.
Except there needs to be an MRI just to be 100% sure.
And MRI, with gadolinium. Again.
Three steps forward. Two steps back.
But once the MRI is done, and clean, and we can all breathe again, then its onward.
The medicine started tonight. It will be every night. Relief is long overdue.
I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.
Tonight was the night.
What an amazing show. I am so glad to be familiar with it now, and you should check it out!
Somehow the words came pouring out. It’s amazing what speaking from the heart can do. I can only hope that someone tonight knows what they didn’t know before.
I find there to be no coincidences in life.
After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer. Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.
(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much! But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)
Near as I can figure these days, breathing increases your cancer risk. But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.
There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us. But we can do what we can to help.
There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.
People ask why we devote so much of our time, energy and budget into healthy food.
Genetics are not on our side. But we can fill our bodies with healthy, pure, organic superfood.
These days the core of the nutrition in our home comes from Isagenix. It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.
beatingcowdens 