Reality – tough to swallow

Published on January 8, 2014 by beatingcowdens5 Comments

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.

The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.

Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”

When she was younger I could hide things from her. Now she’s just too smart.

When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.

She can swim – pretty fast. Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful. You bet. And sad too. And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

50,000!

Published on November 22, 2013 by beatingcowdensLeave a comment

Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views. The number is almost incomprehensible to me. I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.

This week Meghan endured ANOTHER MRI. This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with. Irony. Exasperation.

The bright spot came in the words, “There is no tumor. There is no AVM.”

Sweet relief and agonizing frustration simultaneously.

Grateful beyond measure that there is no need for brain surgery. Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.

Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines. Please spare me “It could be worse.” I know. So does she. But I have to tell you about 3 hours after starting a migraine I am done. She has been at it 2 months. She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices. She just keeps plugging.

So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.

Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.

And one day soon she will feel strong enough to get back into the pool for swim practice. Her health has allowed her only about one practice every 2 weeks. Her goals are much higher. Patience.

Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation. We will figure it out. The stakes are too high to give up.

The rest of the stuff. The worries that are just real life worries, and not Cowden’s worries at all. The ones I can’t blog about. They are the ones keeping my heart extra heavy.

Thanks for tagging along on our journey!

Do penguins have knees?

Published on November 4, 2013November 4, 2013 by beatingcowdensLeave a comment

I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.

It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…

But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”

The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.

I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…

But the headache hasn’t quit. It’s been weeks now.

It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.

But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.

What I do know is that there has been a headache to some extent for over a month and that’s too long.

What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.

She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.

Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.

And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…

So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.

That’s the story that will get me through the night.

When Pigs Fly

Published on August 24, 2013 by beatingcowdens2 Comments

At the very end of school I received this gift from a 4th grade student of mine. I think it is probably one of my favorite gifts in my 17 years teaching. Small and delicate, yet tough and determined. Not much for collecting things, but this was a keeper.

Meghan continues to battle her way through the pain of recovery. She rests and reads and watches TV to pass the time. She is tolerating the pain a bit better, although the reality there was a scalpel scraping scar tissue off the ligament and nerve in the center of her palm is not lost on her every few hours as the medication starts to wear off.

The day we came home I explained to her (again) about how Cowden’s Syndrome likes to “overgrow” things. We talked about “hyper-healing,” and her body’s desire to overproduce cells to try and solve a trauma. That is a crude explanation of our tumor growth. That same crude explanation can be used to explain why some Cowden’s patients have a prevalence of scar tissue. Every time there is a surgery, or an injury the body over works, and sometimes the result can be just as bad as the original problem.

Overcoming impossible odds. I like the way that sounds. The overcoming part, that is.

So, we talked about range of motion and the need to keep on moving those fingers so the scar tissue doesn’t form and stiffen things up. She knows she will need therapy. She is used to that. She did not like the thought that her range of motion could be affected permanently if she didn’t move.

With raw determination she wiggles her fingers. Several times an hour I watch her wince in pain. No one tells her to. She just knows she has to, and she doesn’t like the thought of the alternative.

See its all about the swimming. Her sport. Her niche. Her comfort zone. Nothing will keep her out of the water for long.

The pain exhausts her. She has circles under her eyes, not from doing much other than being in pain. But for those of you who live with chronic pain – you know that it wipes you out. So she sleeps. 13 hours when she can. Better for the healing I am sure.

When I was dusting this afternoon I came across my friend Penelope Pig, and I thought of how relevant she is.

I thought of all the times in my young life I uttered sarcastically the phrase, “When pigs fly!”

I thought of my arrogance and how little I knew about the important things on life – the things worth fighting for.

I realized in all its ridiculousness, it can actually be a poignant phrase.

I’m going to let this surgery stand in my way – WHEN PIGS FLY!

I’m going to stop swimming – WHEN PIGS FLY!

It fits for so many things in life.

So many other things on my mind. So many thoughts all garbled up inside.

Sometimes I feel like we are running on raw nerve, on sheer will and determination.

And guess what – we will give up….

WHEN PIGS FLY!

Recovery

Published on August 22, 2013 by beatingcowdens1 Comment

Recovery.

We should be professionals around here. We should just get up, get going and move on.

But we are human.

We hurt, inside and out.

We get tired, and lonely.

We understand the tired and lonely that others have too – but some days it doesn’t make ours better.

Some days its hard to look at things from someone else’s point of view.

And that’s OK.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

Meghan is full of exhaustion and pain and conflicting emotions.

It’s annoying to realize you blew your whole summer at doctors and in surgery.

Thankfully we snuck in that Disney trip.

I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.

She has a smaller network. Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.

Yet, she is my hero. And my rockstar.

I shuffled her around these last few days a lot more than I wanted to. But, she likes to stay close by me when she is hurting.

So yesterday we picked up the car. Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust. He declared my car “not broken.” Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.

It’s definitely still broken. On to the arbitration with the Better Business Bureau. Just in case someone thought we might rest. No worries. Gloves are on.

She went with Felix and I for our physicals last night.

Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records. (Really WHAT was I thinking staying close to home for a doctor?)

She is tired. But she smiles. And she hugs us. And she asks for pain medicine. And she wiggles her fingers. And she looks at her pool, and the calendar, and she feels the inevitable.

I can’t stop it. No one can.

So we keep busy. We rest. I stay close by. We giggle and make jokes. If I had to “lose” a summer, I couldn’t have lost it with a better young lady!

Recovery.

No worries – WE GOT THIS!

Champions of Hope – Global Genes Project

Published on July 15, 2013 by beatingcowdens10 Comments

I received this in the mail today, and thought it was an error.

I actually Emailed the woman on the card to tell her they had made a mistake.

She assured me they hadn’t. She even forwarded me the nomination form that had been sent in on behalf of Meghan and I. Touched. Stunned. Honored. Flattered.

I talk to Meghan all the time about the blog, about the internet, and about forfeiting privacy in the interest of reaching others and raising awareness. She is all in. She is a preteen. This is the time to address internet issues all the time. I told her the other day she would only want things on the internet about her she would be proud if her family or a future boss saw. She agreed. She is proud of this, and so am I.

We are big supporters of the Global Genes Project. We wear the denim ribbon on our necks every day. (And we hope beyond hope that one day, they will sell them as an awareness raising fund-raiser!)

The winners have been chosen. I wish them all the best.

I have no idea how many people across the world received this glass block that we received. It doesn’t matter, because it won’t make it any less special.

We haven’t done much – just openly told our story. But, apparently to some, that is all they needed.

I am so grateful for the “Rare Disease” friends I have met along the way – those with Cowden’s and other PTEN mutations, and those with diseases I myself am first learning about. Separate we are weak. Together we are strong.

And to the very strong lady, my friend who I have never met, who had the love in her heart to think of us, to nominate us… well, BIG HUGS to you. You continue to make a difference every day.

2013 “Tribute To Champions of Hope” Gala

2013 RARE Tribute to Champions of Hope Gala

They will celebrate in California on September 21st. We will celebrate right here, and with them in spirit.

There are people making a difference for our “Rare” community at large. I am eternally grateful. One day, all this will change… (source) http://globalgenes.org/rarefacts/

RARE Facts and Statistics

Statistics and Figures on Prevalence of Rare and Genetic Diseases

Although rare and genetic diseases, and many times the symptoms, are uncommon to most doctors, rare diseases as a whole represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem.

Here are a few statistics and facts to illustrate the breadth of the rare disease problem worldwide.

There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
Similar to the United States, Europe has approximately 30 million people living with rare diseases. It is estimated that 350 million people worldwide suffer from rare diseases
If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country
In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
Approximately 50% of the people affected by rare diseases are children
30% of children with rare disease will not live to see their 5th birthday
Rare diseases are responsible for 35% of deaths in the first year of life
The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined
According to the National Institutes of Health Office of Rare Disease Research, approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease
Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

And one day this list will be a lot shorter. http://globalgenes.org/rarelist/ (Click to see the more than 7,000 Rare Diseases)

For tonight – I will rest knowing we have helped a few people as best we can, and that we have raised awareness of a few others. I will rest knowing that while I endure the agonizing wait for the wrist MRI there are people working so that one day these Rare Diseases will be a distant memory.

I will rest thinking of my daughter – the future geneticist. One who WILL make a difference!

Bravery/ Courage

Published on July 13, 2013July 13, 2013 by beatingcowdens3 Comments

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.

Why did you like this doll, Mom?

Because YOU are the BRAVEST girl I know.

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.

It’s a Thin Line…

Published on July 1, 2013July 1, 2013 by beatingcowdens8 Comments

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.

JUNE!

Published on June 10, 2013June 10, 2013 by beatingcowdensLeave a comment

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…

We can… WE WILL!

Keep on, Keeping on!

Published on May 20, 2013 by beatingcowdens2 Comments

Several months ago I wrote about “The Beginning of the End” Meghan was having trouble keeping us at dancing school. The pain kept getting out in front of her.

https://beatingcowdens.com/2013/03/25/i-fear-this-is-the-beginning-of-the-end/

While in some ways the decrease in stress these last few months, plus the return of Physical Therapy twice a week, have helped her pain – but, it became increasingly evident dance was just not meant to be.

She was sick, and missed class. Then she was hurting, and missed another class. She missed the dress rehearsal and trophy night because she was home from school with a low fever. Always seems to be something.

So as we headed out to “Candyland” yesterday morning, we all knew it would be her last recital. The dancing takes a toll on her joints that it would be foolish to keep repeating. But, that didn’t dampen the mood on the soggy Sunday. Meghan was ready.

We started her day with the electrolytes from Isagenix that help her so much. Then we left her backstage at the theatre with all the other dancers.

It can get long when your dancer is in number 25 in a show of 27 acts, but I find the other dances entertaining, and before we knew it – she was on stage, ready to shine.

There was no pain evident in that body as the rush of being on stage overwhelmed her. She smiled and moved in ways my body just never could – or would.

When I met her at the stage door to bring her to her waiting father and grandparents, I had some flowers in hand for a job well done. She knew this was it for her, but as always – she kept looking forward. “I will get on stage again Mom. Maybe in Junior High, maybe in a theater program. I can’t keep dancing, but I love the stage.”

We took lots of great pictures. We cherished the memories. We enjoyed a nice lunch of Gluten Free pizza.

Yesterday was a rush

Today came the pain. The elbows, the knees. An epsom salt bath, and some relaxation. It helped some, but its hard to tell. She is so used to the pain.

And as she headed to bed, “How many weeks until my swim lessons start?”

Cowden’s Syndrome, you SOB. You may have me exhausted, but you picked a worthy adversary in my girl. She will not go quietly. She WILL win.

“Beatingcowdens” Not just a blog title, but a way of life.