I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart.
I got the live the life of a “younger” and then later got to have some fun times, and responsibility as an “older.”
It worked.
On the other hand, this journey with this “invisible illness” we call “Cowden’s Syndrome” isn’t quite as smooth. It has to work, but right now it’s the “typical” middle child. It’s having a tough time fitting in where it belongs. Actually it is definitively trying to take over, but either getting ignored, or getting too much attention for all the wrong things.
In February of 2014 there was the complete removal of her thyroid.
In May of 2014 there was a week in the hospital from complications from the medicine that was controlling the AVM.
In November of 2014, almost on schedule, the AVM bled and required emergency surgery.
In February 2015 I addressed another vein gone awry in my leg.
In May 2015 there was the arthroscopy for the AVM knee to quartarize some bleeding.
In August, on the 25th, there will be her second-hand surgery in two years to try to stay ahead of the vascular malformations now forming in her palms. That was an unintended result of Monday’s visit to the hand surgeon.
There are a list of appointments to make, and bills to settle, and I seem to be doing nothing more than surviving.
More blood tomorrow. An Abdominal ultrasound Friday.
The summer is not for carefree adventures. The summer is for doctors. I hate that. But, its true.
And as we met with the oral surgeon today who perused her multiple page medical history, his cavalier remark, “She looks good,” should have pleased me. But, if I may be frank, it pissed me off.
Not because she doesn’t look good. She’s stunning, and tall and polite and well-mannered, and has a beautiful smile. But that is NOT the point.
The point is he never mentioned anything about the medical history, and in our world, being validated matters. Someone needs to say its unusual (read unfair) for an (almost) 12-year-old to be discussing the removal of her wisdom teeth. And while this may have nothing to do with Cowden’s (although I’ve come to know EVERYTHING unusual has SOMETHING to do with Cowden’s,) it is still just grossly unfair. More unfair is that this is ALREADY her second stint in the chair of an oral surgeon, as a mass was removed from her gums some 5 years ago.
We remain “stuck in the middle.”
Again, I have the “healthiest looking sick kid.”
My kid who still ices her knee, and needs to walk a lap or two during swim practice, but still makes practice. That kid will spend a week in a wheelchair at Disney, as she is not to walk more than about 1/2 mile consecutively. The child who still hasn’t gotten clearance from her last knee surgery. Clearly, she doesn’t “look” sick, but the stares and judgment are inevitable. And to some extent I get it. Invisible illness is hard to understand.
It is during this week I feel most “stuck in the middle.” I am so grateful the accessibility issues are limited. I do not fit in with the parents of wheelchair bound children. Although, it is a necessary tool to allow us a much-needed vacation. But, what is not limited are the “invisible” elements of her condition. The chronic surgeries, the doctor visits, the traffic, the blood work, the scans, the inability to just “go”; to the museum, the beach, the park, or anywhere because it hurts to walk too long, the isolation from friends who have no limitations, the poking, the anxiety – well, they never ever go away.
We’ve learned not to talk about them much. But, they are always there. Hers and mine.
She learns to appreciate what she can do, and acknowledge what she can’t. Begrudgingly.
My kid who holds it together through all things, and has grit and determination I marvel at, will act in her summer production at school.
She learns to use the anxiety as a tool.
She masters her emotions. She is the boss of her body. She amazes me.
And on September 18th when she gets her bottom two wisdom teeth removed, the course of action will be no different.
They will never know the powerhouse of a young lady that just left their chair. Until she comes back for the other two a few months later.
“Stuck In The Middle With You” (originally by Stealers Wheel)
…Yes, I’m stuck in the middle with you,
And I’m wondering what it is I should do
It’s so hard to keep this smile from my face,
Losing control, and I’m all over the place
Clowns to left of me, jokers to the right,
Here I am, stuck in the middle with you…
To the Midle School Girls who doubt my daughter’s medical conditons:
I want to start by telling you, I know it’s not your fault. You are generally healthy. You were raised by people who are generally healthy. You get sick. It gets better. You want your share of attention. You resent that sometimes my daughter needs a little extra help in the halls. It’s not fair that sometimes she needs to sit out of Physical Education. You are tired too, right? It doesn’t seem fair that she needs to leave early from the class right before lunch. You’d like to stretch your legs too. Why does she “get” to being her own food everywhere? And is she really “allergic” to all those foods? Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk? She must be lying, right? Looking for attention again? Why does she get to leave early so often? You’d like to get out of last period too. I get it. I understand. You look at people who look sick, and you are probably really compassionate. Except now that you’re older, it’s time for me to let you in on a well kept secret.
Not everyone who IS sick, LOOKS sick.
Take a moment and process that.
Now I’d like to tell you a little about my daughter. The real Meghan. Not the one you always see, but the one I see. The one who I have kissed before 13 surgeries, as she left me for the operating room. The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital. The one who has shed tears of pure frustration and anger over the things that have been restricted from her life. The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.
Let me tell you about the Meghan who knows your problems. The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok. The one who understands deeply your anxiety about getting a blood test. The one who “gets it” on levels you’ll never understand.
Let’s talk about the paraprofessional. While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help? Do you think she WANTS an adult escorting her through the halls? Think about that for a minute. She doesn’t WANT to be different. Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.
And about the trips to the nurse. Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all? Any idea what it is like to never be spontaneous about just grabbing a bite of something? Because your body simply doesn’t make the enzymes it needs to digest food without help.
Please don’t even get me started on the cafeteria. In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous. But, out of the house? Not so easy. You want to know about her allergies? About how she can be “allergic” to milk and eat a product that contains milk? I get your confusion. But, here’s a tip; when you are confused, ASK, don’t assume. She’ll probably willingly share the reasons with you if you are actually interested.
She spent a large part of her very young years vomiting a lot. Sometimes so much that she ended up in the hospital. Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3. She had ear infections all the time and her head was full of fluid. She didn’t talk much, (I know – hard to believe) because her head was clogged up. She cried because she hurt so badly. She was allergy tested for lots of things. Nothing came up. Nothing at all. Then I used my brain. And my instincts. And we targeted some foods.
And do you know what we learned? We learned that without milk, she doesn’t get ear infections. And she learned how to talk right away. And her head stopped being so full all the time. And she could rest.
Then I kept looking. And I learned that soy, in its purest form, caused a rash all over her body.
And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.
Are they “allergies” in a technical sense? No, I guess not. But, they are just as important. I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods. Even strawberries. Or anything with seeds. Or anything too greasy. Or cross contaminated. (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)
So the meal bars she eats at lunch, yes they say, “conatins milk.” But, you know what? They agree with her. She doesn’t love them, but she eats them for NUTRITION, so she can function through the day. The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.
Why would she be anything less than honest about not being allowed to have regular milk products? Do you know she has never had ice cream from the ice cream man? I have to send her own pizza and chips and cake to parties. Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs? Does that really make any sense? Ask yourself of all the things to be less than truthful about, does that even enter into logic?
And about physical education. Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her. Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain. The girl who wants to play longer and harder than any of you, but can’t. The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time. But, she can’t. Because the surgeon said not yet. And even when she’s able to join in, it will likely be on a restricted basis. Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair. Walking more than about 1/2 mile consecutively is too stressful on the knee.
Oh, and the tired. Yep, you are tired too. I get it. You were up late last night. Probably watching a movie, or doing something fun. So you are tired. But, she went to bed at a decent hour. Hers is a different tired. Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal. Hers is from a body that makes a hobby out of defying her. You’re both tired. But, it’s not the same. Trust me.
This is the girl who stays on stage during drama even if it kills her. Even if the pain is at its greatest intesity, because no one has restricted her there, yet.
This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water. This girl has to go to PT 2x a week just to get into the pool. This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve. This is the girl who took less than 2 weeks off from swimming after her knee surgery in May. Because she WANTS to play.
And all those times I pick her up early. It’s not for a manicure/pedicure. Turst me. See, Meghan has a rare disease called Cowden’s Syndrome. She’d be happy to tell you more about it. She got it from me. It causes non-cancerous, and cancerous growths to grow all over the body. She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.) But, there is a doctor, and often a surgeon, for just about every body part. There are MRIs and scans, and hours travleing to Manhattan. No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt. We do the hospital tour. The average round trip is 4 hours, usually after a long day of school.
This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet. This girl has had her mother diagnosed with cancer when she was in 3rd grade. This girl has the same genetic condition as her mother, and the same cancer risks. Some days she has a lot on her mind.
Meghan is not perfect. I know this, and so does she. And if you have a problem, talk it out. Sometimes you’ll be right, and sometimes she will be.
Just don’t assume things. There’s a saying about that… and it’s all true.
You see invisible illnesses, like Cowden’s Syndrome are very, very real.
Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.” They would ALL benefit from your compassion.
Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.
Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious. Forgive me the word adjustment. It’s necessary to ensure her safety.
You see the hardest part about all this for me, is not being able to give you this speech in person. For the last 12 years I have been her voice, her mouth, her protector. Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this. She has to find her own comfort zone.
And I have to watch.
My confidence in with my daughter. She will pick the right friends. She will speak up at the right times. She will learn all about herself. She will become her own best advocate, to you and to the world.
And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.
** This blog was written over 2 days. The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**
I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?” Sometimes I find that question to be the biggest irony. I struggle often, and deeply. The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.
But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”
So often my writing is where I work it out. I type. I think. I read and reread. And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need. And when I am unsure, and it just doesn’t sound right. I wait. Just like I advise people to think before they speak, “Is it true? Is it kind? Is it necessary?” I try to think before I publish. So last night I sat wrestling with this. And I never hit publish.
From “Corner of the Sky,” Pippin soundtrack
Everything has its season Everything has its time Show me a reason and I’ll soon show you a rhyme Cats fit on the windowsill Children fit in the snow So why do I feel I don’t fit in anywhere I go?
So again we hear, “That’s really unusual.” “I’ve never seen that before.” “Typically…” And I chuckle, in frustration and in the irony of it all.
This time it was at the dentist. Meghan felt something in the back of her mouth. An X-ray revealed an impacted wisdom tooth. She’ll be 12 next month. The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm. Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.
This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy. Who really knows where that will lead?
I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density. My next phone call needs to be to the vascular surgeon. He had some success with the right leg in February. The left leg is in dire need now. That is as soon as I can settle the errors on the anesthesia bill.
The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk. Meghan and I both need to be scheduled.
I just finished completing the papers for her medication for the 2015-2016 school year. They are copied, one is filed, and one is set to be mailed Monday.
We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser. We’ve got some neat ideas. It passes the time.
For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,” and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age. One day we will take her to California for the Global Genes Advocacy Summit. One day her vision of a denim ribbon necklace will come to fruition. One day. But not this year. Because this year I am trying to schedule vascular surgery that weekend. Because we have to prioritize. Right?
I have set some fitness goals this summer. I am setting a 10,000 step a day minimum. I am aiming for at least 5 miles a day. My dog is in the cross-fire of this goal. She is my walking partner. Because she likes to walk – but maybe not quite that far- and she can’t really say no.
I am always struck by the ironies in life. I am stronger than I have been in years. In many ways I am healthier. I have found Isagenix, and I feel better. Stronger. More resilient. More able to cope with life’s obstacles.
Which is good. Because life has a tendency to be really isolating.
I suppose we all feel that way sometimes. And many of us feel that way most of the time. But, sometimes that is little consolation.
I am grateful not to fit in with the Moms of really sick kids. I don’t envy them at all.
But, I can’t find a spot with the Moms of mostly healthy kids either. Unless I don’t talk much.
Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.
I want to spend time with people my own age. I have lots and lots of people I like, but not too many friends to get together with. Sometimes I wonder what it would be like to just get together. And chat. Maybe over lunch, or dinner, or drinks. Or maybe have a barbecue, or even a night with other couples. Where everyone socializes. And no one is overly worried about anything. But we end up declining the few invitation we get because something always seems to be in the way.
This life is isolating. The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with. And I get it. And it doesn’t make me mad. Because it is what it needs to be right now. And there are friends I talk to and text with.
Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that. What I write here is a simple representation of facts that are. They just are. And maybe one day they won’t be. But, I have already learned not to wish life away, not even the uncomfortable parts.
But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom. I crave careless, schedule free days. I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.
Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere. Somewhere with an end I can not see. There are stops along the way to make us stronger, wiser, and more patient. There are lessons on empathy and compassion to be learned. There are experiences that will turn us into the people we were meant to be. The road is long and winding. Sometimes the climb is tough. But, but the view, when you really stop and look, is amazing…
Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky…
I ended last night feeling lonely, and lost. The song from Pippin had been in my head all day, resurrected from memories of ages ago. Yet, I couldn’t shake it. Where do I go?
This morning Meghan was well. She woke up well, and early enough to make a two-hour morning swim practice, which she completed. I had time to walk a few miles near the pool. The sun was beautiful, and the air wasn’t quite that warm yet. There were birds singing happily, and flowers to appreciate.
After swim we made it to church. It had been a few weeks since we were able to get ourselves there.
And in the bulletin I was met with a quote,
“I know I cannot enter all you feel
nor bear with you the burden of your pain
I can but offer what my love does give –
The strength of caring, the warmth of one who seeks to understand.
This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman
There was a basket of rocks where we were instructed to take one to represent us. The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ. Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.
We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts. As I chose mine my eyes were full of tears. Not of sadness for those people, but of the promise that they are also enveloped in the love of God. My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water. And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.
The closing hymn (words and music by Marty Haugen, 1987) began like this;
“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”
And the idea that we are here to “Bear one another’s burdens,” permeated my heart.
I am not “UP” by my doing at all. I treat my body well. I treat my mind well. And I allow my soul to be cared for.
My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God. That all things are not mine to know, and that through His grace alone we have the strength to remain,
The awareness that one day we’re not going to walk this earth anymore.
Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.
We face this reality at different points in our lives. Some are frighteningly young, and others are blissfully old. But, eventually, that awareness either creeps in or hits us like a speeding train. (Figuratively, or course.)
In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.
For me, my solace, my comfort, and my focus, come from my faith. My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.
Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.
As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young. (young for her, and for me too!) She got it. She found clarity, but it was a few tough months. And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.
I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer. But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality. I was 10 years younger than Mom was at the time of her diagnosis. I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior. When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.
And there was reality. Unable to ignore. Cancer had lived within me. Could it live again? Would it? When? Why was I going to be OK when so many others were not? Was I going to really be OK? What if they missed it, something bigger?
I was fortunate. Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer. I needed no treatment, no medication. But, my status had changed. In the eyes of the doctors, I was now an even greater risk. Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed. The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk. A significant risk.
Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages. An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age. The things we celebrate…
My Cowden’s Syndrome people are known to me mostly through the internet. We live across the country and across the globe. We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer. While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits. There is that “Sword of Damocles” hanging above our heads. There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry. We stare at our own mortality each time we look in the mirror.
We have an extra bond when it connects to our children. A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality. We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore. We have gently answered questions about family, and future, that have no real answers to date. We ache for them. We wish to take it all away. We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.
Mortality will bind you, and if you’re not careful it can blind you. That is why there are support groups, for cancer patients, and others who have come close to losing their lives.
This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.
I will protect their privacy here, and tell their story as generically as I can.
I connected with Alan, about 6 weeks after my father died. Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps. The award was never granted, and I wanted to pursue it on his behalf. So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006. I wanted to know who remembered him, and his story.
Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.
My Dad, the “Irish Marine”
I sent 20 letters out. EVERY SINGLE MARINE responded to me. EVERY ONE. Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences. Many shared some funny anecdotes. And as hard as I’m sure it was, they all connected with me.
I had heard about the Brotherhood of the Marine Corps. I could not have fathomed the depth of that bond. One after another, they all left me with the same heartfelt sentiment. “You are the daughter of our brother. We will help you always in whatever you need.”
Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned. My Dad battled his own demons for many years before our relationship began to form. But the offers of these Marines were sincere, and genuine.
Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries. In the end, we lost the battle on a technicality. Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.” The letter was cold. The case was closed.
We lost the Purple Heart but gained so much more.
I was sad, mad, angry and disappointed. But I was so grateful for the Marines who wrote letters of support. I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result. I wanted this for him, because he never fought for it himself.
And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me. He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.
So, this weekend I headed to West Virginia to thank him myself. I met a group of Vietnam Era Marines, several of whom had served with my father. I watched them together, in awe an amazement. I was welcomed into their group with instant acceptance. And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told. Surely a contrast to the realities they had faced as young men years ago. But, the bond between them was unbreakable. There indeed was the Brotherhood of the Marines, but there was something else.
Mortality.
They faced it in the most horrendous of ways. They lived it daily. They buried their brothers. They knew their return home was not a guarantee.
And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life. As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”
I was among a group of people who had faced their own mortality almost a half century ago. And they have a bond that can not be explained. It is amazing.
And among the most amazing to me was the woman I met. She was not local either, but she, like I, had traveled for this celebration. It was not her first time. She had been around for almost 10 years. About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with. She had never met her father, but here were father figures galore ready to embrace her. And they did.
A bit ago her father’s diary surfaced from his time in Vietnam. She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily. His diary ends with, “When will it be me?”
Once you have looked your own mortality square in the eye, you can not walk away the same person.
But, it is up to you what you do with the rest of your life.
As for me, I choose bonding with people who “get it,” be they old friends or new.
I choose focusing on what we can do, not what we can’t.
I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.
Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.
As for us, in this house, we choose to remain focused on
It wasn’t the loud sobbing kind of crying. It was the kind where the tears just run down your cheeks.
And if they’ve been held in there a long time, it’s really, really hard to make them stop.
I cried first when I saw the office, of the Long Island Surgeon, 30 miles, and 2 or more HOURS away from home. As I approached the room my heart sank and a tear fell. It was empty. That’s never a good sign.
Then when I spoke to the less than sensitive receptionist, she said, “The doctor isn’t here today.” Which I had figured out all by myself. But, I checked the schedule on my phone to be sure I was right, and I was. 2:30 June 25th. I left work early. Rushed to let the dogs out. Got Meghan. Braved the Belt Parkway. And, made it in just on time.
“Look,” I showed her the schedule on my phone.
She was grossly unimpressed and contacted the doctors direct secretary. She said she called my cell phone on May 18th and left a message. Clearly the message never got to me, likely the result of a simple dialing error. I even flashed the less than sensitive one, my voicemail log on my phone. “See, no call on the 18th.” She was still unimpressed, and now annoyed as well.
Meghan told me this morning her knee hurt. I haven’t heard that with regularity in a few weeks. She told me on the way to the appointment that she was glad to see the doctor today. She said she feels like her kneecap is shifting again. This was a primary cause of her preoperative pain. I could see the swelling. I just wanted some reassurance.
But, it was not to be. Because to argue about a phone call would have no real helpful answer, because the bottom line was, there was no doctor.
And the tears just started to fall. At first I worked to wipe them away. Then I just let them go.
I was offered a PA, and initially said no. Then I asked Meghan. She said she’d try one.
“The mother asked the patient, and it’s ok to send a PA down,” mocked the less than sensitive one.
YES! I wanted to scream. YES! The MOTHER, asked the PATIENT, because the PATIENT knows her body better than ANYONE. Her age is irrelevant. Her experience wins.
So we waited for the PA.
He examined her knee, and spoke about the swelling, which he said was likely due to “irritation.” REALLY? I was told her right quad has a good deal of muscle atrophy (something our PT noted BEFORE the surgery,) and that she should suspend all activities for a week, ice and elevate, and return in 7 days to see the surgeon. We scheduled for 9:30 AM, so she can miss the second day of camp, only to travel from Long Island to Sloan Kettering for an endocrinology visit, and back home for PT. (Summer vacation? Anyone?)
He saw my tears, and saw a weak, unstable woman. I know he did. And for the first time ever I stopped myself from justifying my tears. I simply told him there were many things involved in my frustration that he did not comprehend. The end.
I am done apologizing for my feelings. And I am done trying to explain sometimes, although not often, I cry out of sheer frustration for the madness that is our lives.
And as we got 2 cups of green tea to go, I cried some more.
I cried for the stupidity of mis-dialed numbers, and for the 4 and a half hours of our lives wasted, again.
I cried because no one really cares. Not really.
I cried as I watched the teen bald from chemo get out of the car. I shed tears of gratitude that it could always be worse.
I shed tears of sadness, for my girl, growing up too fast. Advocating for herself. Standing her ground with doctors. Because she just shouldn’t have to. And I cried for the doctors, who are missing out on a valuable opportunity. They could listen to my young, articulate, “in touch with her body” daughter, and they could learn a lot. Then I cried in desperation at the reality that they don’t want to.
I cried angry tears for the ones who have no regard for Cowden’s Syndrome. Those who don’t understand it, so they ignore it. They skip over it like a child trying to read a story above grade level. Because they have never seen it, they deem it irrelevant, or unnecessary. They don’t know that our ENTIRE treatment plan ALWAYS need to be grounded in the reality that there is Cowden’s Syndrome, and nothing is as it seems to be.
I cried about the summer that should be free of, or light on schedules, polluted by these doctor’s appointments. Necessary to complete in the summer so I can keep my job, and she doesn’t miss too much school. I thought about the week to come, Monday- Manhattan, Tuesday- Long Island, and PT, Thursday Long Island again, then Manhattan from there, and back to Staten Island for PT. And the following week, appointments for me Monday and Tuesday, 5 in 2 days. Meghan on Wednesday, and the dentist… as soon as we can get a Thursday afternoon free.
I cried about HOURS of our lives we will never get back. Ridiculous trips that take 5 times as long as they should.
I cried because I am wasting her childhood with necessary evils. And I hate it. I hate it a lot.
I cried for the isolation and loneliness created by a disease that keeps us both busier than we want to be.
I cried for our friends with this stupid disease and their physical, emotional, medical, family, and life struggles.
Eventually the tears dried into a scream or two. My girl had no idea I have those lungs.
And, as we arrived LATE for PT, I breathed a sigh of relief. Behind the doors of Leaps and Bounds PT, they “get it.” So Meghan works on getting better, physically and emotionally in a place she feels safe.
I booked PT through the summer. I had hoped we wouldn’t need to. Not for any other reason than it adds to a schedule we’d rather not have. So that “doctorless month” we’ve been trying to plan for three years isn’t happening this summer.
“I’m over it Meghan.” I told her as we were driving. “I’m over the whole Cowden’s Syndrome thing.”
And in her infinite wisdom again, “I guess, but without it I wouldn’t be the person I am. I’ve learned a lot…”
And the teacher is the student again.
Tomorrow I will have the tears back in their proper place. Tomorrow. But this is today’s reality, and sometimes that’s OK too. Because regardless – we are
And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again.
I am just along for the ride.
She looks like me. She and I share a broken PTEN gene, and all the ramifications. She inherited my tendency to grow things, and perhaps her body is even playing harder with her.
We are roughly the same size. We have curly hair. We share some clothes. She and I are both stubborn, sometimes to our benefit and sometimes to our detriment. We are strong-minded and strong-willed.
And that is probably where the comparisons stop.
Yesterday after a full day of school, she fit in a PT session, 2 hours at after school drama, a good run at her abbreviated swim practice schedule (for the second day in a row,) and came home to complete some lingering homework.
Tonight, her father and I took her to the school’s chorus/drama performance. It was hot. It was long. It was so worth it.
The kids have amazing talent. I guess what I didn’t really get until tonight is that mine fits right in.
After a skit on Helen Keller, where she played Annie Sullivan, she stood with several 6th-8th graders and they each sang acapella, an excerpt from a Broadway show tune.
Meghan had never heard of “Fiddler on the Roof.” She downloaded the song she was told to learn. She practiced. I fought back tears of pride and joy.
I told her drama teacher I had no idea she had that in her. The teacher told me to “wait and see what we bring out of her in the next 2 years.”
What a gift. Two happy places. The stage AND the pool. BAM!
“Standing in the middle of nowhere, Wondering how to begin. Lost between tomorrow and yesterday, Between now and then.And now we’re back where we started, Here we go round again. Day after day I get up and I say I better do it again…”
The chorus to the old song rings through my head, as we prepare to return to work and school. Eight days post-op and everything checked out just fine at the surgeon. It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy. The surgery went well. The recovery is moving along. But, as with each time we’ve done this, there are no promises. There are some cautious words. There are some hopeful words. This is what I have to focus on. And I will.
But, sometimes it can be hard.
Like when you do research and turn up this page from an orthopedic clinic. (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”
Knee
Primary Inflammatory (Synovial) Disease of the Knee
Diagnosis
Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.
Injury or Condition
This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.
Cause
The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.
Symptoms
Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.
Treatment
Standard treatment includes:
Anti-inflammatory medication for six months.
Safe exercises to improve strength without aggravating swelling.
Ice, warm packs and knee balms can be used to decrease pain.
Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.
Precautions
Important precautions:
Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
Avoid stress.
Recovery
As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.
“Two – thirds of cases generally recover completely.” The math teacher in me is unhappy with those numbers. The mother, the mother of this child, knows that she defies statistics whether they are for or against her. She is her own special case.
Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork. Maybe it was a good distraction. After surgery 13, the novelty of the whole thing has worn off. Days are long. Recovery is mundane. People are busy. Texting helps a bit, but the hours drag.
We got to PT this week, twice. And already I see progress. That’s why quality therapy is worth every minute.
So during my days home I did laundry, and caught up on some household things while I stayed close to my girl. I also attacked “the pile.”
There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes. I try to get to it every few days. But mostly I don’t. Then it overwhelms the table. And somewhere under the pile is “the list.” The upcoming appointments line the top. Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.” Today was a good day to tackle it. I made some significant progress.
I also spent hours on the phone. I dredged up the anesthesia bill from my surgery in February. That took an hour. But, it’s done for now.
I started scheduling appointments. We tend to cluster a lot the first two weeks of the summer. Some have been planned for months. Some I’ve been blocking. I got a few more in. Then I got stuck.
In the hospital the pediatrician last week was really on my case. She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance. She didn’t like that I said, “ME!” (Maybe it was the way I said it… (grin)) But, truth be told, I really don’t like it either.
I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.
Meghan’s blood pressure in the hospital was low. Like at times crazy, scary low. I know she was just cleared by a cardiologist, but…
And the lesion on her hand dubbed “vascular” by the dermatologist…. What to do with that? The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her. The same doctor who said she’d help us. That one. Yep, she’s useless at this point too.
I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well. Apparently the fact that she’s “adult size,” doesn’t matter. I was left so frustrated I choked on a few tears.
This Syndrome is big. I can manage it. I can and I will, because there is no other choice. But, I need some help. I need a point person. Someone to force the doctors to listen. Someone to gather it all into one place and make sure it makes sense. Someone to make sure we don’t miss anything.
In desperation I emailed the genetecist who diagnosed us. He responded within an hour.
Dear Mrs. Ortega,
I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.
I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan.
Sincerely,
(The angel I need… I hope)
I will call tomorrow to make an appointment. I have a good feeling about this one. Please, whatever your faith, send some prayers. This would be huge. Really huge, in a life-changing good way. We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.
I just want to keep her safe. I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.
“…Where are all the people going? Round and round till we reach the end. One day leading to another, Get up, go out, do it again.
Then it’s back where you started, Here we go round again. Back where you started, Come on do it again…”
The early hour usually means I would be at work. Instead, I am sitting on the 10th floor, in the waiting room. Again.
Right now my beautiful girl in undergoing surgery number 13, the 6th on her knee. The goal is to stop the blood that has been leaking into her knee and causing degeneration and chronic pain. This time there is a new doctor at the helm, an orthopedist from Long Island. Our vascular guy, the leader of surgeries one through 5 on that same right knee has taken a back seat. He is on standby. We are sitting.
Waiting.
Alone with our thoughts. Not always my favorite place.
These last few weeks have been a whirlwind. When we met the orthopedic surgeon in February, and Meg said May was a good time for surgery, she had certainly calculated her plan.
Over the last few weeks, we have been busy packing in as much good stuff as we could fit.
The school play, her first production, was April 30, and May 1. It was such a thrill to watch the spirited enthusiasm from my daughter and all the other children. She is hooked. And while drama practice was going on 5 days a week, she was still making three swim practices a week, working hard to finish out strong. As a result she received the “Coaches Award” at the team dinner last week, and she was moved “up” a level. She was able to practice with her new group starting Monday, so she got in 2 practices before this procedure will derail her for a bit.
She also almost finished the CYO Swim season. Making 7 out of 8 meets (the last one is May 9th) she swam hard and strong one day each weekend as well.
In the midst of all this, she managed to balance her time well and was inducted into Arista, the National Honor Society.
All the while we looked for spring clothes, and shoes (in 2 different sizes) for my beautiful 5 foot 5 young woman.
I know there are people who are busier. I know multiple kids jostles the world. But, I also know I am proud.
She ran on raw nerve. She pushed and pushed in ways that would have taxed a healthy child. And she made it. Sunday’s morning swim meet was a no – go, but I am just so impressed she accomplished all she did.
And just for fun she broke her first pair of glasses yesterday. Not bad for a kid whose had them since K. New pair already on…
And I’m impressed I got her there.
We like to convince ourselves that we are just like everyone else. But the reality is that this genetic disorder messes with our bodies and our minds.
As I said to the nurse this morning when she wondered why Meg was a little edgy, “It’s not you. You are just an ACCUMULATION of her life. Step by step. Poke by poke. Surgery by surgery.”
I think she got it. Maybe. As the woman in the bed next door in preop – clearly in her 60s, said she had never had surgery before.
So very hard to believe.
I’ll update later. I’m waiting. Cheering my kid on as she continues to be BEATINGCOWDENS.
First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.
Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.
I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.
By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.
In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.
In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.
In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.
In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.
Then – just about when I was ready to turn 30 – we had Meghan.
Disney 2012
Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.
In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.
In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.
In my 30s I learned how to balance two full time jobs, as a mother and a teacher.
In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.
In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.
In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.
In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.
In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.
In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.
In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.
In my 30s I learned what it was like to hear the words “You HAD cancer.”
In my 30s I learned which body parts are “extra.”
In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”
So much has changed, and yet at my core, my heart – I am the same.
I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.
I know life is not fair.
I know God is Good.
This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.
I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.
Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.
So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.
This is really how I view the race against Cowden’s Syndrome
Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.
I do the best I can to show her that its important to stand up for what you believe in.
I think she gets it. I know I do.
The 30s have been a ride, and I still have a few more months to go.
In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.
If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.
I have this delusion in my head of what a Saturday should be. I think sometimes about getting up – not at the crack of dawn, but at a reasonable hour. Getting a quick breakfast and jumping in the car to head… well wherever we want to go. I think about spending Saturday as a family. Worry free. Relaxing together. Sharing an adventure.
Then there is reality. It has a way of biting you in the behind when you aren’t paying attention. (Or when you are practicing active ignoring.)
Reality is that we have two working parents in this house. That same reality that allows us to pay for the medical bills that creep up, and the fun stuff like vacations, is the same reality that means Saturday afternoon adventures are uncommon. Well, almost unheard of anyway.
I have a grocery shopping routine – down almost to a science. About every 3 weeks on Friday night, I go on the marathon. I stop at Costco, and run home with what we need. Then I head to Wegmans in Woodbridge, and Whole Foods in Millburn. The whole journey is about 40 or so miles, and it takes about 6 hours from door to door. Then there is the unpacking…
Why?
Well food sensitivities have kept Meghan gluten, dairy, and soy free since she was about a year old. She is also very sensitive to dyes, preservatives, nitrites, food coloring, and the like. Her diet is pretty much pure and organic.
Local shopping is not as plentiful as that over the bridge, and prices are flat out better there. So, last night as we undid the (ridiculous amount of money) worth of groceries, and I put a soup in the crock pot for today, I was about to fall over from fatigue.
The piles of laundry already covered the basement floor. The beds would need to be stripped in the morning. The bathroom was in dire need of a cleaning after my husband repaired a pipe that burst under the bathroom sink. I thought about shutting down the alarm and just letting my body do the talking this morning. I thought about it for about 3 minutes.
Then I took a flashlight into Meghan’s room. I covered her eyes and looked at the sores on the right cheek of her sleeping face. My heart sank. I turned the alarm on. I knew where we had to be in the morning.
In addition to having Cowden’s Syndrome, Meghan suffers with an immune deficiency. Well, technically speaking probably more than one. She is IgG subclass 1 deficient. Her body doesn’t seem to remember how to fight infections. She is also Mannose Binding Lectin deficient – a whole other element of the immune system – just absent.
Usually she holds her own. She takes a HOST of vitamin and mineral supplements. She eats that pure and largely organic diet I spoke about, and aside from seemingly chronic fatigue, she does OK most of the time. She can’t be running around too long or too often. She can not be over stressed. These things wear her out, and then we have trouble.
When she was just 6 months old she was first hospitalized with an infection of Herpes Simplex 1 (fever blister) on her right cheek. It was odd the location it started. It was in the middle of her face. Before we knew what it was it had become cellultis, and we spent a week in the hospital. The first 2 days were the scariest as the blister kept increasing in size. Eventually my pediatrician at the time called in an infectious disease specialist (my pediatrician now,) who swiftly diagnosed the herpes simplex, and began IV acyclovir. Within 24 hours things calmed down. A week after we were admitted, we got to go home.
However she never, despite a few miserably failed attempts, got off the acyclovir.
She spent another week in the hospital at about 20 months, treating an aggressive outbreak.
At one point we slowly weaned her to 500 mg a day only to have her develop a very painful trigeminal neuralgia which the oral surgeon wisely explained was caused by the herpes virus taking up residence in the trigeminal nerve in her face.
We promptly went back up to full dose, only to watch the pain fade away in a few days.
We have seen minor outbreaks through the years – usually nothing more than a red mark to indicate its time to do something. We have slowly watched her dose of acyclovir be increased. Currently at 80 pounds she was taking 1400mg a day.
We worry about the liver. About whether there are long term effects. But there really is not a choice.
That’s why as I shined the light on her face last night I knew this morning would involve a trip to the pediatrician.
We arrived bright and early and as he greeted us warmly he sized up her face in one brief glance.
“I see our old friend is trying to make an appearance. Raise the acyclovir to 1600mg. Move to 3 times a day to help it get through the system better. Take a picture every morning, and call me if it doesn’t improve. I will see you in 2 weeks.”
We stopped at CVS. We texted a friend’s mom for a play date. Then we got home at about 11:30 – drained.
Felix was working to bleach the bathroom – a job my asthma doesn’t allow.
There were human beds and dog beds to wash. There were floors to clean, and dishes to do. There was spaghetti sauce and some gluten free cookies to make.
As I heard the sound of giggling girls from behind Meghan’s closed bedroom door – I took solace in the fact that at least she had an adventure today. Even if it was in the house.
Cowden’s Syndrome and the immune system don’t seem linked on paper. But, anecdotally I hear of issues from every Cowden’s patient I correspond with. What goes on in our bodies to make it just so hard to put a virus to rest?
One child. One diagnosed genetic disorder on the tumor suppressor gene. A mannose binding lectin (a protein) that is also missing. An IgG subclass deficiency. Metabolic errors still being unearthed.
And I was looking for an adventure?
I should be happy and content with the Saturday cleaning. It is the most rest we seem to get!
beatingcowdens 