Daily struggles – Page 30

Saturday Adventures

Published on May 25, 2013May 25, 2013 by beatingcowdens1 Comment

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!

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.

Moving Forward

Published on May 16, 2013May 16, 2013 by beatingcowdensLeave a comment

May 16th for years has had a special place in my heart.

In 1985 my cousin Meghan was born. I was in the 6th grade and giddy to get to know her. I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.

"Angel Meghan" - 1987 — “Angel Meghan” – 1987

Her feisty nature, her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.

My daughter carries so many of the characteristics that endeared my cousin to me. She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them. She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.

Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy. I knew that day I had the prayers of my family, and the strength of my angel by my side.

I have a “thing” for dates. I remember numbers. Maybe this is how my love of math shows through. I like answers, and things that are absolute, or make some sense. Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating. These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person. They are all pieces of that every evolving puzzle.

I thought about the surgery this morning. I thought about it being a full year since all my “girl parts” were officially gone. I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me. Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago. And I got dressed with a smile.

I thought about Angelina Jolie. I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk. I thought about how happy I am that she has brought genetic testing into light.

But a few things have really bothered me.

PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk. I myself had been tested for BRCA1 years before I ever knew of PTEN. I was negative. The genetic counselor who tested me did not even have PTEN on her radar screen. I know its rare – I do. But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks. I am sure there are more that I haven’t learned about yet. Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well. Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.

I am also bothered by the haters. You know the haters. The “Monday morning quarterbacks.”

They have crept out in quantity and I have a few words for them too.

BUTT OUT!

If you don’t like the idea of a prophylactic mastectomy – then don’t have one. Plain and simple.

If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.

When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do. Then, maybe then you and I can talk.

Until then, wish Angelina a good long healthy life. Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.” Get a feel for what we go through every single day of our lives.

You probably wouldn’t know us if you passed us on the street. We are some of the strongest and bravest and smartest people you will ever lay eyes on. We stop and smell the roses. We hug. We smile. We laugh. We get how fleeting life is.

May 16th will always be a significant day for me.

But, moving forward -so will every day. The first year is over. Now on with the rest of our lives!

************************************************************

In case you are interested…

http://idioms.thefreedictionary.com/a+sword+of+Damocles+hangs+over+head (Sword of Damocles)

http://globalgenes.org/ (Global Genes Project)

http://www.rarediseases.org/ (National Association of Rare Disorders)

https://www.facebook.com/ptenworld?fref=ts (Facebook Page for PTEN world)

Prophylactic Bilateral Mastectomy – Not just for the movie stars

Published on May 14, 2013May 14, 2013 by beatingcowdens8 Comments

I have been busy this week – working a on a few new projects. Trying to find some distracting hobbies. I need a few things to every once in the while take the focus off the imminent cancer risks plaguing Meghan and I every second of every day.

So, I started talking a lot about Isagenix, the product that did so much to give my husband back his health, and to help him lose over 30 pounds in the process.

This week I have signed up four friends to try to get healthy with Isagenix, and I feel good about advocating a high quality product.

http://meghanleigh8903.isagenix.com/us/en/landing_cfl.html#

This week involved hosting an anniversary party for two overly deserving parents. It also involved some run of the mill nonsense – dealing with ridiculous medical bills and the like, from people who will never “get” what it means to have to spend every day of your life out in front of a chronic, potentially life threatening rare disease, PTEN Hamartoma Tumor Syndrome – or Cowden’s Syndrome, as we usually refer to it.

I do my best every day, to raise awareness of what it is like to live with a rare disease, a genetic mutation that predisposes my daughter and I to so many cancers. I do my best, wearing proudly our denim ribbon, and sharing ribbons with friends and family, to educate the community on our, and other Rare Diseases.

Now, I know its slow going, but I am confident that more people in our community have heard about Cowden’s Syndrome than just a year ago. Of that I am sure. And we will continue our grassroots effort – one person at a time. Until hopefully, one day everyone will know of the “Global Genes Project,” and the 7.000+ Rare Diseases besides ours that are out there.

Today I sat down at a scoring site for the State Math Exam, and two girls I never met before feverishly gushed over the bravery of Angelina Jolie. Having heard nothing of the story, I asked what all the fuss was about.

“She had a preventative double mastectomy because she has a gene that makes it more than 80% likely she will get breast cancer. She is so brave!”

I smiled in spite of myself. I smiled in spite of the irony that had me wearing the T shirt “Yes, these are fake – the real ones tried to kill me!”

I smiled because I thought it was great that Angelina was well and had gone public.

“You know she decreased her breast cancer risk to under 5% now? She is so brave! I can’t imagine anyone doing that!”

I still kept quiet. I quickly checked my Emails to reveal that the blogs I follow regularly were all over the Aneglina story and had eloquently covered it. I listened some more.

Finally, almost on cue, they got bored with their story and asked me about my necklace – the denim ribbon.

I told them I my daughter and I had a rare genetic disease. That the denim ribbon was the symbol for rare and genetic disorders. They asked what the name of it was. So as I identified “Cowden’s Syndrome,” the expected reply was given. “I haven’t heard of that.”

“Well,” in my most succinct conversational tone, “PTEN is a gene that stops tumor growth. Ours is broken so we are more likely to get cancerous and non cancerous tumors all over our bodies. Especially in the breast, thyroid, and uterus.”

“YOU MEAN YOU HAVE THE SAME GENE BROKEN AS ANGELINA JOLIE???”

(Having not fully read any article I quick double checked my suspicions and confirmed,) “No, she has a mutation on the BRCA1 gene. My daughter and I have the same 85% risk of breast cancer, as well as countless other elevated cancer risks.”

“Well if you ever have to get a mastectomy at least you’ll know Angelina did it.”

You know I never much followed the stars. And I am so grateful for Angelina Jolie for being brave and going public. But there is so much more people need to learn. Nothing comes in neat little packages. Nothing.

I stretched out my shirt so they could read. “Yes – they’re fake , the real ones tried to kill me!”

“I had my double mastectomy. Last year. They found cancer. And I am ok. Genetic mutations aren’t just for movie stars. Bravery isn’t just for those who have wealth and power. There are more of us than you think.”

I was grateful when the tests arrived at the table. It changed the conversation. People don’t want to talk about cancer. Especially not young women with genetically caused cancer. It makes them uncomfortable.

I am glad Angelina Jolie went public. I just wish the public would open their eyes to the realities that are undoubtedly right next to them every single day. It doesn’t take a star. Just a conversation.

Let’s talk. Let’s listen. Let’s learn. We can save lives.

“Count Your Many Blessings…”

Published on May 12, 2013 by beatingcowdensLeave a comment

“Count your many blessings, count them one by one. Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon. I remember as a youth singing the song in church. I must have sung it plenty of times, because the lyrics are stuck in my subconscious. And, as things int he subconscious tend to do – they often pop out at just the right time.

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad. 25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen. Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband. I was greeted by my beautiful daughter and lots of hugs and kisses. Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad. We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew. Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again. How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life? How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted. That song started in my head.

“Count your many blessings…”

I thought of the friends I have who are desperate to be mothers. The friends who had to struggle to have the children they have. The friends who have miscarried, and friends whose young children live in Heaven. I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago. I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired. How lucky am I to need a list to shop for Mother’s Day Cards? How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone. But, I am aware that those years will come all too soon. For now – let me run, and visit, and hug and chat. Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight. I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow. A rampant virus, and her rotten immune system are not a good match. She won’t plant with her science class the way she likes to. She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease. A day of differences and disappointments. A day she will handle with the same graceful smile she uses for every other aspect of her life.

My daughter is the one who reminds me to count my blessings.

And, oh do I have many!

Collateral Damage

Published on May 4, 2013May 4, 2013 by beatingcowdens1 Comment

In regard to surgery and absences – this year has been much better for both of us… Maybe some things are looking up. (Published June 8,2012)

beatingcowdens

Collateral damageoccurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

I don’t think it’s far-fetched toequate Cowden’s Syndrome to a war.

Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is…

View original post 337 more words

History – Where it all began

Published on May 1, 2013 by beatingcowdensLeave a comment

Yep. That’s what it is. It’s history. The story of our lives for the past year. It started in a small blog I shared only with a few friends. It blossomed into a WordPress blog with 50 followers, and a Facebook group with over 225.

I am humbled really – that anyone is even interested in our story.

I am grateful and excited for what we are doing to raise awareness of rare diseases like our Cowden’s Syndrome.

I wrote my very first blog post on May 9th of 2012.

Very few of you were with me then – but this is where it all began.

For the next two weeks I plan to “replay” some of my favorite/most informative blogs from the early days.

Hope my nostalgia doesn’t drive anyone away!

CLICK ON THE LINK BELOW FOR A TRIP BACK TO MAY OF 2012!

https://beatingcowdens.com/2012/05/09/

Who is in charge?

Published on April 28, 2013 by beatingcowdens1 Comment

Meghan slept until 11:20 this morning. She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.

We had woken earlier, Felix and I – but not too much earlier. We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan. She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off. We have a lot of respect for her body. It gets VERY cranky if you don’t listen carefully.

My three girls... resting together. — My three girls… resting together.

But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.

When she came stumbling out of her room to the sound of the hammer she was dazed but smiling. After a good morning hug she asked what we had to do today. When I told her that we were going to stay home all day she leaped into my arms.

Can I read? Yes…of course.

Can I watch some TV? Sure.

Can I take my shower later, and stay in my PJs? Absolutely.

While part of me was tempted to lecture her about getting up and showered and dressed, I refrained. Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.

In so many ways Meghan and I are somewhat different, but also a good deal alike.

Our bodies eventually shut down if they are always on the go. We need our down time.

Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up. They still move like that. And I still need to stop sometimes.

Now, I have a mini -me. (And my sister has two! :-))

So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off. For most of the month we were on a 7 day schedule.

Meghan switched schools.

We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….

But, we did it. A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.

State tests – 6 days of them in the last 2 weeks. Stress – all of them. But they are over too.

Yesterday I pulled out Meghan’s spring clothes. There wasn’t much we could use. The sandals from last year were a size 6. She is a 7.5. The same was true for the clothes. We put even less away for the fall. Nothing really. But we will cross that bridge then. Right now she is almost 5 feet tall and every inch of her beautiful inside and out.

No wonder she needs to rest sometimes. Her body is certainly hurrying its way through its growth.

I spent the entire day at my desk. I just finished about an hour ago when I began to write. There were bills to file, papers to sort, letters to write. There is a letter writing campaign I am working on for a stop sign by my school.

There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html (check that out here)

There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.

I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite. I thrive on order and organization. I showered early – like I always do, but I relaxed by creating order.

You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it. “You plan – God Laughs.” And I know she is right.

I really should listen to my Mom... — I really should listen to my Mom…

However, in this world where so many things are so far out of my control – I have a compulsion to control what I can. I can make sure the floor is clean, and the bills are paid, and the laundry is done. I can make sure there are always cupcakes for Meghan in the freezer in case there is a party. I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.

Crazy? Maybe. But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.

The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning. This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up. I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption. And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.

That is how it goes. Cowden’s Syndrome keeps us hopping. And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.

So – for tonight, the floor is clean, the list is made, the desk is organized. For tonight I can rest, and gear up for whatever this week has in store. And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.

I’m not in charge of this. It’s in the hands of a power far greater than any of us.

I’m only in charge of keeping the fur off the kitchen floor.

All kinds of tests

Published on April 16, 2013 by beatingcowdens5 Comments

So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.

I have absolutely no idea if her assessment is accurate. I am only grateful that for one afternoon, her anxiety was lower.

Last night before she went to bed, we spoke a lot about testing, and my expectations for her.

As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.

So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.

Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.” This followed by a cheery, “Chill out – You got this!”

As she lay her head down, last night, and tonight, she repeated those words to me.

There really are so many teachers who “get it.” The kids are so much more than any number on a piece of paper.

It is such a challenge being on the parent end of things.

But, at the end of the day, these aren’t the tests that matter to me. Not really.

On Monday the 1st of April there were 13 vials of blood. On Saturday the 6th there were 15 more.

This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.

These are the tests that keep me up at night.

These are the tests she has no control over.

These are the tests whose scores really do matter.

Hormones, Thyroid, neurotransmitters, immune function…etc… etc…

The results for the school tests won’t be in until August.

Some time in the next week I will have to deal with this latest lab panel, and determine if we have any new answers, or just more questions.

Perspective is a definite reality check sometimes.

She will go to school and do her best, and I know regardless – she is already successful.

I only wish I could hold onto that same confidence, as I await these lab tests.

Maybe…

Published on April 10, 2013 by beatingcowdens2 Comments

And that is what we took.

Stuck in a corner – a stifling corner, with anxiety, and all of its evil friends – we decided to break free.

And I can not think of a better thing we could have done.

Today was Meghan’s 3rd full day at her new school, and while she misses her friends – she is adjusting beautifully to the welcoming students and professionals that have greeted her.

She received an outstanding foundation at her old school – teachers who worked alongside her right up until we made the move last week. She received a foundation from them that will allow her to soar here.

I am eternally grateful.

But there is a time for moving on.

Sometimes it happens neatly at the end of 5th grade. And sometimes it happens before that. This was her time.

Which shouldn’t surprise anyone because nothing really seems to be wrapped up in a neat little organized package – not in life, and certainly not in Cowden’s Syndrome.

She changed schools, but the Syndrome stays. And sometimes that’s a hard reality to swallow.

See she is so excited to meet new children, and to run and play and socialize – we hoped that maybe the release of tension would eliminate the pain. It took a few days for the pain to catch up. But, it moved too. It lives with her – no matter what school. Although I am convinced it is less than it was.

Stress is evil. Tension is its nasty twin. The conbination wreaked havoc on her already struggling body.

Now, there is much less stress and tension, but there is still pain. A knot in the hip that doesn’t want to quit is pestering her still. And while I am grateful that the tolerance is higher, I am not sure if the pain is any less.

Any time an injury lingers, or a pain persists for more than 2 weeks – even if it is intermittent – we have to ask ourselves if it is time to go for imaging.

Xrays are not good for Cowden’s Syndrome. Radiation can send our sensitive cells into a tailspin. And the alternative – MRIs, are taxing – on everyone. But how long do you wait for a pain to go away when you have a syndrome that provokes tumor growth? How do you know what is the right time?

We scheduled the summer appointments. I was hoping to wait until then for all the check ups and tests.

Somehow, I suspect we will have to see someone a bit sooner.

But, I am stalling. Maybe the happiness will cure it.

Maybe swim season – her first ever competitive sport she ADORES – will straighten it out.

Maybe.. just maybe… we won’t have to add one more confused doctor to the list of clueless professionals who don’t know how to help us anyway.

Maybe… her blood results from Dr. Elice will come in this week, and maybe there will be an answer or two.

Maybe…