I have been quiet this week. That in and of itself is unlike me.
I am tired – well bordering on downright wiped out.
There are a few more weeks of summer to go, and aside from a well planned Disney Trip, set in place in January – there seems to be precious little to look forward to.
Meghan has a short list of “have tos” which I plan to do EVERYTHING in my power to work out for her, but really every effort I made to keep this summer better – to “streamline the doctor visits” seems to have failed miserably.
Today she began her summer homework. While it is reasonable, it is one more thing on a list of “have-tos” for a kid that just wants to be a kid.
There is no camp for Meghan. It is all doctors appointments – all the time. And when it is not her appointments it seems to be mine. She is swimming three nights a week on a new team, at least she is LOVING that – but we have barely been inside our previously overused pool.
And its funny, while she and I have both had appointments of almost equal number in the last few weeks, I feel so much less stress about mine.
The geneticist the endocrine surgeon, the gyn oncologist, the abdominal MRI, the plastic surgeon, and the oncologist. The spleen survived its next cut – and can live for another 9 months. The 3.5 cm roundish lymphangiomas are stable. That’s all we ask for now. The thyroid lymph nodes – not suspicious enough to biopsy.
The plastic surgeon, well the LOVELY woman offered me a boob job to correct the “asymmetry” caused by me shoving the reconstruction all into one day. Not this year, but thanks. Good to know the offer stands indefinitely. For now, I have other things to do.
So I have only one more of my appointments lingering, a late July follow up with the breast surgeon. I thought of blowing it off and then realized how dumb that would be – for so many reasons. So, I will go.
But Meghan’s appointments, those are the ones that keep me up at night. Those are the ones that strike fear and anxiety in the core of my soul. My heart beats outside my body in this little girl. I can not sum up in any number of words the depth of my love for her.
So to say this summer, and especially this week has been sheer hell would be the understatement of the century.
Her appointments began the day after school ended. The lengthy thyroid sonogram bought us another 6 months. The pituitary function test was a train wreck, but the call this week claims the results were OK. I want to feel more relieved. But its hard. I am waiting to read the report myself. “Doubting Thomas?” Maybe. Realist – probably. Something is not quite right, but at least its not SO wrong it has to be addressed today.
The geneticist began to speak of carnitine issues, and I am waiting to hear of a possible muscle biopsy. In the interim I bought carnitine. Lets see if we can cut that one off.
The vascular surgeon examined the wrist, painful since early June, and the knee. He wants an orthopedist on board, but wanted me to consult with the rheumatologist about the wrist, and then scan the knee that had the 4 surgeries, because its been over a year. The rheumatologist concurred on the MRI studies, so we went forward with the wrist first.
Saturday, as I wrote about previously was hell on earth. I have been through a lot of MRIs with this kid, and the behavior of the two techs scared me to my core. I was assured upon exit, that the results would be available to my doctor Monday that passed. Well multiple calls, over the course of Monday and Tuesday led to a promise the results were being released Tuesday. “It’s a complicated read Mrs. Ortega.”
Wednesday morning – still nothing at the vascular surgeon’s office, only to find the CD and report left by courier at 10 am. They will make it by 3 I was told.
A return call to the surgeon’s office at 4:15. “They just got here, but the doctor is gone – emergencies. He should be able to look at them tomorrow.”
Some time around 4 AM my daughter climbed into bed between my husband and I. She had been awake long enough to finish her book, but she just couldn’t settle over the pain in her wrist. At about 6:15 this morning she nodded off. I tried desperately to find my peace.
And all day today, again, I held my phone. We skipped the pool in between the “have tos” of getting the oil burner cleaned and our annual trip to the dentist (normal stuff.) I refused to be far from my phone. But as minutes became hours, my hope dwindled.
A call to the office at 4:30, “Sorry, he never made it in today, but Meghan’s chart is on top of his desk. He has office hours tomorrow.”
Six days.
Unnecessary torture.
Six days.
Wondering, worrying.
Even if the report – by some freak of nature reads “normal” I can’t even be pleased, because the pain is not normal. It is real, and it is consistent, and it has gone on too long.
I wish for a lot of things in the world.
I wish for children and their parents not to suffer with illnesses or adversity of any kind.
I wish for relief for those in physical, mental, and emotional anguish.
I wish for peace in the hearts and minds of the caretakers of those who struggle.
But today I also wish something else.
I wish that EVERY SINGLE medical professional who performs a test – from what is perceived as insignificant, to critical recognizes the power of their words, and their actions. I wish that EACH of them understand what it is like to be on the receiving end of cryptic messages, grossly extended tests, and precious little reassurance. I wish that EVERY doctor who receives a call from a patient panicked about their results be PROMPT in their response. I wish that EVERY one of them, who goes to work each day and forgets that our child, parent, sibling, loved one exists will at some point in their life be on the waiting side.
I WISH for every one of them – from the techs, to the couriers, to the office staff, to the doctors- to have the opportunity to await the results of a test from someone they love dearly.
Then MAYBE, just MAYBE they will understand our torture.
Bravery – Ready to face and endure pain; showing courage
Courage – strength in the face of pain or grief
It’s not a secret how I feel about my girl. It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known. She faces adversity better than most adults I know. She presses onward with determination, not drama.
I don’t mean for a minute that there is never a hiccup on the path. That would be delusional, and even unfair for a child who has yet to pass her 10th birthday. But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.
Yesterday we has testing at MSKCC in NYC. We were told to arrive by 8:30 AM for testing at 9. It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30. Then we would be home by about 2.
So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20. As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3. She then proceeded to tell me maybe I wanted to reschedule.
Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot. The medication would arrive at 3. We would have our ultrasound at 2. And everything we left the house for bright and early WOULD be accomplished, before we headed home.
I can be a calm and rational person, at the right time. But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!
So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”
We took the shuttle to 53rd street and 3rd Ave. Then we WALKED to 42nd and 7th. Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed. The 25 minute walk each way did more damage to her legs than I could have imagined.
But, we did get to Toys R US. Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.
She left with a Merida doll from the movie “Brave.” Ever so fitting in so many ways. I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.
The shuttle took us back to MSKCC by 1:30. We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound. Then it was back up to the floor for the test. The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.
And there she sat, for 2 hours, in her chair. Reading, playing with her iPad, watching movies. Uncomfortable. Exhausted. Brave. Courageous.
It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem. But, time will tell, and the waiting game is one we are well practiced at.
So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.
Only to be woken this morning by the ring of the alarm clock.
An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street. The June 4th injury never healed, and it was finally time to get some answers. The doctors we have seen all have differing opinions. AVM? Arthritis?
When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many. We have the pattern pretty much down.
We let the (hopefully) nice nurse pick the IV spot.
Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits. So, after two painful sticks to the left, she ended up with the IV on the side of her wrist. And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.
My cursory question of “How long?” Was answered with “Less than 45 minutes.” It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room. But, somehow it makes me feel better.
Ear plugs in place, the door closed us in, and she headed into the tube. My hands remained on her ankles, and I could hear the deep breathing. It was just her and Merida inside the tube now. Bravery at its best.
It was 11:25.
It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.
And then it was 12:45, and some time after 1:00 we were taken to another room. Another room with a smaller tube and a stronger magnet – for a few more pictures.
This doctor, this attending, at the hospital reviewed her images, and wanted more. This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam. This doctor wanted more pictures.
So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right. I gave her an abridged version of my inferences.
Then I chuckled at her response.
If something is wrong with my wrist, how will I do the archery we signed up for in Disney?
We will make it work Meg. No worries.
And she laid, quiet and still as could be as 5 minutes became 20 before we were done.
So that’s it? You aren’t going to tell me anything? I asked the tech.
I am not a doctor was the painful reply.
Understanding they can’t, it didn’t help the growing pit in my stomach.
Your doctor will have the results Monday afternoon or Tuesday morning.
Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.
Last night I asked when I was going to get a break.
I take it all back.
BEATING COWDEN’S will require stamina and strength I never imagined I could have.
I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.
I wanted to make the 200th post of “BEATINGCOWDENS” extra special, so I asked my (almost) ten year old daughter Meghan to be the Guest Blogger!
1. How has Cowden’s Syndrome changed you?
Cowden’s Syndrome hasn’t changed me. It has always been a part of me. Knowing I have Cowden’s Syndrome has only made me more aware and more prone to understanding my body.
2. What are some things you want people to know about being a kid with Cowden’s Syndrome (PTEN Mutation)?
It’s hard not to be like other kids, but I am really glad all of the problems are found earlier than later.
3. What makes you glad you were diagnosed?
My diagnosis forced me to look at what was good for me and what wasn’t. I had to give up soccer and dance, but I LOVE swimming, and I feel like I am getting better at it every day. I am always trying to improve physically because I need to stay strong. I am glad I found a way to compete with other kids, and not always be last. I am also building swimming friendships.
Spring 2013
4. What makes you sad/scared/ or worried you were diagnosed?
I feel more vulnerable, and sometimes a bit weaker because I can’t do everything the other kids can do. I can’t run and play outside like them. My weak immune system causes me to get more viruses, and I worry about thyroid cancer too. I try to find the positive in every negative and I don’t let worry get the best of me.
5. What is the most frustrating part of Cowden’s Syndrome?
I go to so many more appointments than any of my friends, and lots of times we have to wait forever. I keep busy at my appointments with my books, my iPad, and my Rainbow Loom. It is taking up the first few weeks of my summer vacation, and I would rather be home and bored than running back and forth to Manhattan every day!
6. Do you have any kids that you can talk to about your diagnosis?
I feel like I have three kids I can really talk to that understand. My friend Conner is in Colorado. He also has Cowden’s. He is about my age and really funny. Also, I can talk to my friend Georgia in Australia. She is also about my age, and even though we are really far away from each other, she is a very nice girl. I am glad I know her. I have been able to FACE TIME with these far away friends. Sometimes the time difference gets tricky, especially to Australia. The first time I saw Georgia it was 10PM here! We talked for over an hour!
I also have a friend on Staten Island, who I feel like I can talk to. Even though its only been a short time, I hope our friendship continues to grow.
7. What do you hope to do when you grow up?
When I grow up I want to be a genetecist.
I have always wanted to be a doctor!
I feel like I will know a lot about it. I also want to do agility training for dogs. Right now I have two dogs that I love very much, Allie, and Lucky. I always want to have dogs.
Lucky and Allie
8. How do you plan on using your diagnosis to make a difference in the world?
I plan on making all rare diseases more well known. I want to do a movie night at my school and raise money to donate to The Global Genes Project – they help all rare diseases.
I want more people to understand rare diseases, and do more research so there can be a cure.
But, all that starts with awareness. Last year I asked my parents for something to wear, a symbol (like a pink ribbon) that would represent me, and my struggle with Cowden’s Syndrome. The Global Genes Project uses a denim ribbon and the saying “Hope It’s in Our Genes.” I really like that symbol so Mom’s friend made it into a necklace for me. It is hand engraved, and says “First of its kind.” It is really special.
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”
Mom and Dad have one now too. One day I hope to look across the room and see someone else wearing one. I want the denim ribbon to be as popular as the “pink ribbon”
I am really excited to be Guest Blogger. Life with Cowden’s is hard. I try to focus on all I can do, and like to do – especially swimming and reading. I’m an (almost) 10 year old. I wanted a normal life, but really when I think about it my life is the only one I know. Even with its cons I’m happy with it. Cowden’s Syndrome is a real pain,but its brought out the best in me. People need to be aware of these diseases. It feels great when someone understands you a tries to lend a hand.
For the last 6 nights my soon to be 10 year- old has slept in between her father and I.
Now I will pause to give you time to gasp, as wave your fingers at me.
I will give you time to self-righteously proclaim that you “know better” than to put your child in your bed, because once you start “that habit” you will never be able to break it.
Go ahead. Tell me its my own fault that I don’t sleep as comfortably as I could with my 5 foot tall 85 pound child bouncing between clinging to my husband and I.
Tell me I should just send her back to her own bed.
And then – when you are done. Come over. Please. I will even make you some coffee – but you will have to settle for fake milk. No need to keep any in a house where a child has a dairy allergy.
When you come over you can watch her for a few minutes. I will let you watch as she winces in pain, and cries out as she bounces around. And that, that is after she actually gets to sleep.
See before she gets to sleep, there is pain. Always some pain. Always. But some nights, or weeks like this one, it is worse than normal.
There are nights, and plenty of them that she sleeps in her own bed. Right through until as late as we will let her. Those are the nights the pain is at its best.
Then there are the nights she needs one of us to rub her in her bed. A knee, a calf, and ankle, an elbow, a shoulder, a wrist, or even a head is keeping her up. Sure, you could say she is exaggerating. Maybe she is acting like any kid who doesn’t want to go to sleep. But Meghan is above many things, a really rotten liar. So, when she hurts – she lets us know. And when she doesn’t it never comes up – end of story.
The worst nights are the ones like this week. The ones where she can’t even get herself comfortable in her own bed. These are the nights she cries not only for the pain, but also for the raw fatigue that keeps her awake when she would rather sleep.
This week there has been pain. Pain in the legs as she adjusts to swim practice, or plays with a friend or two at a play date. There has been pain in the wrist, the pesky wrist injured now since early June. The one that has to have a problem – we just don’t know what it is – yet. The wrist in line for an MRI/MRA has a pulse to it that is reminiscent of the AVM in her knee. But we are trying not to jump the gun.
If you ever do stop by my house in the middle of the night, to see why none of us have any semblance of a normal sleeping pattern, maybe you can bring a warm compress, or strong hands, and help as we massage cramping, painful body parts.
No one knows the Meghan of 2 AM.
Everyone sees the bright smiley face.
Everyone sees the interpersonal child who talks with everyone – who makes them laugh.
Everyone sees the reader, the friend, the kid who likes quiet, and order, and rules, and helping people in need.
The Meghan of 2, or 3 AM disappears with the morning light. She washes her face, brushes her teeth, and puts on the best smile she can to prepare to face the world.
This is the story of life with chronic, invisible illness.
No one knows about the growths on her thyroid, or the insufferable hot flashes she has.
No one knows about the effort it takes her to walk up the stairs, or to sit and play with friends.
No one knows she is slated for 2 more MRIs, a pituitary function test and a pelvic sonogram – and that’s just the next 2 weeks.
No one knows because she doesn’t “look sick.”
And she wouldn’t have it any other way.
She wears her denim ribbon necklace, the one crafted after the Global Genes Project logo – every single day. And she dreams of the day she will look across a room at another little girl wearing one too.
The denim ribbon is the symbol for rare and genetic disorders, and since identifying her own need to have a “symbol” to wear, like my pink ribbon, she saw to it that one was created to be worn around her neck. She chose to have it modeled off the Global Genes Project- an organization that spoke to her heart soon after our Cowden’s Syndrome diagnosis.
We wear them now, my husband, and Meghan, and I – united in our battle. And we hope that one day there will be more.
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”
Next month we will travel to Disney World, as we have for the last 6 years. While we are there Meghan will use a wheelchair.
Recently, when the controversy hit about the misuse of Guest Assistance Passes at Disney, I was sick to my stomach.
You see I have a child with a virtually invisible disability. She can walk, by the grace of God. She can swim. She can function throughout a day – often with insufferable pain at night.
But what she can not do is walk for long distances. Ever. Regardless of the footwear – no matter how hard we try to prepare. She just can’t.
We took her out of soccer because of the impact. We took her out of dance for the same reason. Now she swims, and even with that sometimes the muscle pain is difficult to bear.
So it is especially tricky for us at a park that necessitates walking and standing. Sometimes she can stretch her legs. Usually she can cover about a half mile on foot. Then she needs to rest. If she pushes too hard on day 1, by day 4 we might as well be back home.
She spent her birthday one year in tears, pleading with me – in the middle of EPCOT that she would go home “RIGHT NOW IF YOU COULD MAKE THE PAIN STOP.” That was the day after we let her walk 50% of the day before.
She hates being confined. She would rather walk. She looks like she should be walking. But she can’t be. Bottom line.
So as I said earlier, those of you who want to judge me for rubbing my child’s sore and aching body so she can rest – feel free. As long as we breathe she will be able to seek comfort in the arms of her mother and father.
And when you see me pushing her around Walt Disney World, I know there are the lowlives out there who abuse the policy, but before you assume that my “normal looking” child is one of them, ask yourself if you have ever met anyone with an invisible illness.
Ask yourself how many children, when given the opportunity, would rather navigate the happiest place on earth from the confines of a chair. Sure we all need a rest some time. But she’d rather have it on a bench. And while we are at it – she would rather be having an ice cream cone like the other kids too.
Just because I teach my child to go through life with her head held high. Just because I teach her to push through pain. Just because I teach her to smile at adversity and to be kind to judgmental strangers- that doesn’t mean she doesn’t hurt. None of that invalidates the 4 surgeries for the AVM in her knee, the thyroid biopsies, the constant scans, the issues yet to be uncovered.
My child knows patience. She knows how to wait. And she does it all year at countless doctors, and invasive lab tests, with grace, and poise and dignity.
So, before you forget what invisible illness looks like- look here. We are too busy BEATING COWDEN’S to acknowledge the judgmental. We teach our daughter to love and forgive. She has too much stress in her life to harbor any anger. We learn our best qualities from her.
I know I am not the only one. But I think sometimes the first step is admitting it.
Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.
My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)
It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)
So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.
The entire month of June I salivated for July. I couldn’t wait for schedule free days. Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year. The July calendar makes me nauseous. Literally.
I mean we might have gotten bored eventually, but we have barely been near the pool. I say bring on the boredom.
Most of our appointments are in Manhattan. That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity? day of the week? air pressure? There is ABSOLUTELY no predicting.
We could take the bus. But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do. So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.
And, since there is no predicting, there is always a meal to pack. Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.
Sometimes we are on time. Sometimes we are late. Always we wait, and wait.
Meghan is the most well-behaved child. I don’t lie because there is no need. I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit. For hours and hours. I couldn’t pull this off if she was any other way.
But, I don’t know if I would have a choice. There is no traveling to Manhattan at 4 pm, on a school night. It just can’t be for either of us. So we do what we must.
Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years. She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.
I am in the basement, shredding, and writing while I wait for my overworked shredder to cool. Trying to get a few things off the “to do” list.
My head is constantly going – processing new information learned this week. Thinking. Asking. Wondering. Worrying.
Today is a good day. Daddy is home. The ultimate distraction for her.
We had a long talk this morning, me and my girl. I tried to push her to reach out to some friends. To go and be carefree like she should be. Even if its only for a while. Everyone has something we reminded each other.
I still can’t shake my need for order. I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.
Cowden’s Syndrome – our curse, and our blessing. Sucking away hours that should be spent on the beach or in camp. Forcing a little love to grow up way too fast. Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.
I lost my driver’s license today. Just the license. It fell out of my pocket. For $17.50 I ordered a new one on-line. Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina. They don’t know what they are up against.
The beach… and all her other plans – I will do my best.
It’s a thin line between love and hate. That’s how the story goes right?
These days I feel I am walking a very thin line, teetering tenuously between confidence that I will end on solid stable ground, and terror that I will just fall off.
Balance has never been one of my strong suits. But I try. Every moment of my life I try.
It’s a thin line:
between paid work and “real” work
between schedules and chaos
between strong and terrified
between education and being “over informed”
between smiling and crying
between a cider drink, and a few ounces of straight rum
between prevention and over protectiveness
between not screening, and missing it
between realizing everyone has struggles, and feeling overwhelmed by your own
between knowing it could be a whole lot worse, and wanting to crawl into a corner and give up
between a vacation, and a time to catch up
between feeling lonely and being alone
between cancer and “precancer”
between prevention and overzealous
between holding your girl as she cries in pain, and crying the night away yourself
between asking all the right questions, and asking too many questions
between BEATING COWDEN’S, and giving in…
It’s a thin line.
I am walking it every day this month, as the schedule changes constantly, and the number of days I had nicely confined so as not to overtake our summer quickly begin to envelop July.
I am walking it, as I wait for call backs that never come on time – cell phone pressed into my fingers.
I am walking it as I wait to schedule haircuts, and dentist appointments, and things that “normal” people do.
Why do I ask so many questions? Why do I push for answers no one really wants to give? Why?
Because if I don’t – who will?
It’s not going away.
When I walk the line with Cowden’s syndrome, and vigilance on one side – ignorance and denial seem to be on the other.
I don’t plan to fall – but if I do, I know where I need to land.
As a young child a can remember hearing stories of rainbows in Sunday School.
This week I needed lots of reminders that I am not alone. God keeps His promises.
Yesterday we saw Endocrinology at MSKCC in NYC. They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid. She was an angel – calm and patient. I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now. The things we learn through repetition.
It was obvious to me that the many nodules – well over 10 – are still there. At least three are quite large. I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.
We spent an hour waiting on the ninth floor, the pediatric cancer unit. And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.
Meghan played on her iPad as I watched. Chemo pumps beeping. Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body. Some sleeping, some resting, some running. And their parents. Dark eyes. Worry. Terror. Fake smiles. Bitten up coffee cups. “Count your many blessings count them one by one…”
“Mom, I am not scared of thyroid cancer. I am only scared if they don’t catch it early enough.” I knew what she meant. She went back to playing.
In the doctor’s office there was a moment for us to be relieved, kind of. The nodules are slightly larger, but are growing slowly. They are still in that same “precancerous” state, but we are not in imminent danger. No biopsy right now. We get at least another 6 months out of the thyroid.
Then there were the other conversations. The ones about hormone levels that won’t regulate on lab work. The MRI that showed a pituitary “diminutive in size.” The inconsistencies of these tests with her current development. The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”
Yeah, and…
So he drew the labs again. This time at “his” lab. And a thyroid panel, and a few other things.
He’ll call me Monday. Then I will find out more about “human physiology.”
At swim practice last night I met a mom. She has an only child too, just about Meghan’s age. And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night. And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends. There are no coincidences. Of this I am sure.
And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,” we dragged ourselves out of bed again.
I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted. As I crossed the bridge I had the sinking feeling that I didn’t have my wallet. Back across the bridge. Back home. Back out. An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed. Into the $42 lot we went. We made it into the office at 10:03.
The vascular surgeon is uptown. He has been inside of Meghan’s knee 4 times, so he knows her well. This time we had less overall pain to report. But, of course he never felt the pain was connected to the AVM anyway. So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block I had his attention. The legs have different girth. The left is undoubtedly stronger then the right, having been spared the AVM. Do you take her for PT he asked? Um… constantly.
Fortunately we love Dr. Jill!
We took her out of soccer and dance and put her in swimming. There isn’t much else we can do.
Oh, and could you look at her wrist? The one she hurt at the school carnival almost 4 weeks ago. She was victorious at her quest to climb the rock wall. Stubborn, competitive child. But has paid the price since.
For a few days I told her to suck it up. I admit it. But it kept going. Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened. This one wasn’t quitting. Dr. Jill helped us. We tried a brace. Then another one. Then no brace. No better.
So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over. I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.
He examined it for what seemed like forever. Then he asked me who my orthopedist was. I laughed out loud. The one subspecialty we have NOT found – is pediatric orthopedics. So he asked if she had a rheumatologist. I said we were headed there July 9th. He said try to move it up, and call him after I saw her. She needs and MRI of that wrist.
“I don’t think it’s vascular…” And after that we will get one of the knee – just to be safe.
There went two more days off the summer calendar.
40 blocks away was the geneticist. He is the one we credit with saving my life. And I credit the angels with placing him in our path two years ago.
We spoke at length. He has more questions. More research. He has a theory. He will call me. He will send me the articles. The conversation lasted an hour. He is brilliant.
She hugged him and told him she wants to be a geneticist. We have a friend for life.
The people training on the new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.” I don’t know why I find the system to be perplexing. I should be used to it by now.
It rained tonight. Thundershowers. They have been happening a lot lately. Maybe I need a lot of reminding. The rainbows are there. The promise remains. Nothing happens by accident. God’s timing is perfect.
As I was getting ready to say goodnight to Meghan a few days ago, she was visibly upset.
During our conversation I learned that she felt the cleaner I had just given her for her face had made the small bumps she has (courtesy of Cowden’s Syndrome) more noticeable than before.
I didn’t see it.
I look and I see my beautiful daughter – radiant inside and out.
Cowden’s affects the skin, and sometimes we get these obnoxious small bumps in all places you would never want them. Dermatologists with little experience with the syndrome don’t recognize that each one is in fact a tiny benign tumor, in the hair follicle, causing inflammation.
She is almost 10. She is 5 feet tall. She has fantastic hair and a great attitude about life. But, like any girl in this society she gets self conscious about her appearance at times.
So, in my effort to reassure her that her “bumps” were most noticeable to her, I showed her my legs.
Both legs are riddled with bulging, pulsating, colorful varicose veins. I have had 7 surgeries to keep them under control and eliminate the pain that goes along with them. I have over the last 2 years lost about 35 pounds. They just don’t let up.
I told her how self conscious I am about my legs. I told her how hard it is to wear a bathing suit, or shorts. I told her that I have only bought my first shorts in over 10 years in the last 2.
I know now what I didn’t know then – that these relentless varicose veins are likely a credit to my Cowden’s Syndrome, and the same path that led Meghan to that pesky AVM in her knee – a generation earlier presents as these veins in me.
She looked at me, pointing out my own insecurities, and she said Mom, you have to understand – it looks worse to you. And you have to remember, “Some people only wish they had legs… or legs that work.”
And there it was. My girl again.
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears…” – Laura Story
We took the iPad. We looked at pictures of veins. We looked at pictures of acne. We looked in the mirror. We hugged.
Sometimes its so hard. One battle after another on this journey.
I don’t know that I could handle anything so gracefully without my young teacher.
It’s June. It doesn’t feel like it. At least the weather doesn’t. It’s cool and rainy. I guess that’s OK for now – while we are still wrapping up school.
It has been a long week.
I don’t usually leave my blog unattended for so long. I am behind at writing. I am behind even further at my reading. It seems the days just blend together lately.
It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall. There isn’t much time to be still.
Well – in another 2 weeks it is!
It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever. You are grateful for the citizens, and politicians alike that fought relentlessly. You are thrilled by speed bumps, but you still want that stop sign. You celebrate with a glass of wine – or two.
It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen. You are the mother. You will get by.
It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable. Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90. You balance those PT appointments with swimming lessons, all in preparation for the team she will join. The team she is desperate to swim on successfully, and God willing – pain free.
It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician. It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face. And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine. So, you take a chance and toss the Celebrex to the side. Hoping maybe, just maybe she can get by without it.
It’s June and its raining. You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain. Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it. Celebrex it is.
The war rages – all the months. The battles are won and lost on a regular basis – but the war looms large. I don my armor – a large binder of medical facts, bloodwork, and reports. I gather my inner strength.
It’s June. Summer vacation is coming, but there will be no camp in our house. It doesn’t fit in with the schedule.
Every six months. Every doctor. Forever. Mine, and hers. Different doctors. Different times. Different facilities.
I am getting better at the scheduling. I have learned to bunch them together. So, we go in February and again in July.
For Meghan it’s the thyroid first. That foreboding nemesis. Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist. That’s just the last week in June.
Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…
There will be 15 appointments before the 2nd week in July. That’s if every one goes well.
This is how it has to be. We have to work, she has school. We can’t have the appointments all throughout the year, so we must endure them all at once.
It’s June. I am already tired. Wrapping up one full time job to focus on another. I feel my anxiety rising.
Getting all my rest. Gathering my inner strength. Armed and ready. Kicking Cowden’s to the curb…
beatingcowdens 