Locks of Love

Some time earlier in the year Meghan told me she wanted to donate her hair.

Inspired by a few stories of children with cancer, and prior to her own diagnosis  (a very mild and stable case) of alopecia areata, she knew something good could come of something so basic so she set about the business of growing her hair.

locks of love

She knew she needed 10 inches to cut for “Locks of Love,” and she was determined.

I was inspired.

So while she grew hers, I quietly grew mine too.  It wasn’t the first time she led me by her example.

And when her resolve strengthened I shared my intention with her, and we were set to donate our hair together in September.

Except mine wasn’t long enough – not yet.  And maybe that was a blessing because she got to blaze the trail.  She sat bravely as her pony tail was chopped off.  She smiled as her curly hair bounced up as if it had been waiting for the weight to be released.

hair 1

hair 2

And somehow I think she grew up even more that day.  And with that selfless act, she became even more beautiful, more mature.

meg school photo

So, when it was finally my turn, she held my hand.  She held my camera.  She reassured me that I had done something good.

Sometimes she is so much the grown up that it is frightening.

Sometimes, albeit rarely, she is a ten year old kid.  I am working to treasure both.

mom school photo

hair 3

It’s OK if my hero is 5’2”, wears a size 8.5 shoe, some of my clothes, and was born after the turn of the century right?

hair 4

She makes me want to be a better person.

better-person

Catch-22

catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.[1][2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over. 

-Wikipedia

 toxicworld

You know a person could go crazy trying to keep themselves free from toxins.  These days it seems to be an all consuming, and virtually impossible task.  Sometimes I wish I knew a lot less.  Sometimes maybe ignorance is bliss.  And cheaper.  And a LOT less stressful.

But then again, I think my girl would be a whole lot worse off.  And therein lies the “Catch-22.”

Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.

Back in the summer of 2005 things were definitely NOT ok here.  I knew it deep down where that Mommy gut nags at you.  We had speech therapy.  We had occupational therapy.  And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable.  We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”

So, I read.  I researched.  I altered her diet.  I added some key supplements.  I started to see results – but not enough.

This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan.  He told us he could help.  And he has.

We have worked together through dietary interventions.  Supplements.  IV treatments.  Countless blood tests.  And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5

He has been my sounding board through lots of ups and downs.  I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.

He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches.  “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.”  Not too often these days will you find any medical professional with that confidence or drive to do what is right.

Through the years we have visited his office at least 3 times a year for lengthy consultations.  He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue.  I have listened to many, and ignored a few.  Conversations have evolved over the years as we have each stayed up to date on current research.

The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal.  He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.”  Meghan “doesn’t fit in a box,” he would always tell me.  Never let them try to put her in one.

And, perhaps truer words have not been spoken.  As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.”  But, since we are yet to put our finger on it – we continue doing the best we can.

Cowden’s Syndrome involves screening tests.  Regularly.  For cancer, and vascular malformations that can form anywhere at any time.  X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.”  So MRI is the test of choice.  MRI with contrast that is.  Gadolinium to be exact.

I’ll get back to why that is important in a bit.

We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned.  In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.

We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially.  We have gone from treating with Advil to treating with 200 mg a day of Celebrex.

We have spent the last few years trying to help her stay calm- only to watch her anxiety mount.  In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss.  Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.

We understand the role of autoimmune disease and stress, and toxins.  We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene.  We understand that there is external and internal stress.

We do what we can to control stress on the body.  We make sure she has “down time.”  We try to help her get rest.  We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy.  We eliminated almost without exception preservatives and dyes.  We bought new pots and threw out the plastic plates we used to use sometimes.

We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.

And even at that – there is an awareness that we can NOT control it all.  There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly.  We are aware of toxins in the air, in our soil, and even in our filtered water.  We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.

GMO safety-testing

We run, like Indiana Jones, out in front of the boulder, in constant motion.  One stride ahead…

Chelation

Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/chelation-therapy

The term has been spoken over and over again by the “bio medical doctor.”  Chelation is the concept I found every single excuse to overlook and ignore.  The idea  shook me to my core.

The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck.  Let’s try to clean her out.”

toxic

She went for her first treatment last month.  After the treatment there is an 8 hour urine test to measure the toxic metals excreted.

She went for her second treatment today and I got to look at the printout of last month’s urine analysis.  So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.

There are several metals that were high.  None of that made me happy.  But the most disconcerting of all…

The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4.  Her output was 190.  No I am not forgetting a decimal.

Gadolinium.  Necessary for the cancer and vascular screenings set to be part of her life forever.  Except apparently her body can’t seem to excrete it.

Toxic metals

Catch-22

Keep Swimming…

 

 

Generous Heart

I’m not exactly sure how the idea got into her head.  At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair.  And she decided that she wanted to do it.

For a bit of time it was talk.  We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair.  Then she got serious.

Sometime right after school ended she decided it was time.  So, we went to a new hair salon and had her hair measured.

“Close,” they said.  “Come back in about 2 months.”

And, as summers go, time passes and 2 months is gone.  We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.

Before...
Before…
Almost ready...
Almost ready…

 

She was anxious but determined.  Confident that it was the right thing to do – she bravely sat in the chair.  Her hair was measured to ensure it reached the necessary 10 inches.

Then, even I held my breath as the pony tail was cut off.

Meg LOL 2

And as the hair fell down, the smile of relief sprang up.  She saw the life bounce into her hair.  She knew it would all be OK.

As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.

Once again, my girl led me by example.  Once again her bravery is unmatched.

You see last Friday we found a small bald spot on the top of her head.

Yesterday Meghan got the formal diagnosis of “Alopecia Areata.”  It hasn’t got a blessed thing to do with Cowden’s Syndrome.  Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer.  The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.

Stress can trigger this unpredictable autoimmune hair loss.

We can hope the spot was a reality check for all of us.  A reminder to try to take some deep breaths along the bumpy road we travel.

We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen.  We go through too much here not to have each other’s trust.  I answer questions as briefly as she allows, but I always answer honestly.

There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning.  Alopecia Areata is a life-long condition.  It may stop now and rest forever.  Or maybe it won’t.  We just don’t know.

But we are kind of used to that around here.  There are no “plans” anymore.  Only guesses, and hopes, and prayers.

And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.

For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.

My beautiful, BRAVE, GENEROUS girl!
My beautiful, BRAVE, GENEROUS girl!