“…plans to give you HOPE and a future.”

for_i_know_the_plans-66441

When you’re in the middle of it, it’s often hard to see it.  You’re in the middle of it, trying to be careful, protective and nurturing.  You’re in the middle of it, often wide awake hours longer than your body wants to comprehend.  Sometimes you’re terrified.   Sometimes you’re confident.  Often you’re in prayer.  This thing.  It’s big.  Too big.  Like a giant web with unmanageable offshoots.

Somewhere in between trying to get back to school after a night in the ICU last Sunday, and this Saturday morning when she woke, not ready to swim, but with a raging 102.5 fever, I lived a few years.

The last few nights I’ve lived a few more.

Fortunately, I take pretty good care of my body, and when she’s well I make covering between 7 and 9 miles a day a priority.  I make eating well a priority always.  I invest in nutritional cleansing by choice.  It’s a lifestyle.  I focus on taking the stairs when I can.  Laughing with the elementary school children as I hit the 4 flights in our building over and over is good for me, and them.  Some people train for marathons.  I train for life.  It’s a bit of a marathon itself.

Buddha-Quote

It’s quiet here.  Nothing stops a conversation faster than telling in honest frank terms the newest challenges Cowden’s has thrust in our faces.  Last week there was the trouble breathing and the debacle of no answers at the ICU.

Tuesday the orthopedist recognized uncharacteristic tightness in al her muscles.   Her hips and legs were in full spasms.  He was confused.  Updating him on what was new since our last visit included the D&C amd precancerous cells in the uterus.  It included letting him know she is now on 10mg a day of progesterone.  To say he was unsettled be an understatement.  He let us in on his fears that the hormones were causing muscular issues, and that he feared her vascular malformation could indicate a tendency towards blood clots which this hormone level left the door wide open for.

Sigh.  Growl.  He left no bones about where he stood.  He withstood our questioning about risks and benefits.  He disagreed with the hormones.  End of story.  I asked if we were to return in 6 months.  I was told 2 months.  He’s concerned.

And as the week went on she continued to just feel worse.  For the second week in a row, only one swim practice.  An indicator of the severity of things.  By Thursday I reached out to the Adolescent Gyn.  She called while we were in the pediatricians office stating how poorly Meg felt.  All the suspicious virus tests came through negative.  CBC was normal.  Our Pediatrician spoke to the Gyn.  With reservation on her part, and too much “soft evidence” cited by him. the decision was made to pull the hormone.

no guarantee

This is NOT a decision to be taken lightly, for so many reasons.  The least of which, yet still significant, is the generalized body discomfort that came with the months prior to the D&C, and prior to the hormones.  It was torture for her.  Then, there was the clear declaration, (because everyone likes to speak to the very smart 12-year-old,) that this hormone treatment, this move to arrest cellular growth in the uterus was the BEST way to help ward of cancerous tissue trying to form.  In other words this hormone causing chaos in her body was her best shot at avoiding uterine cancer.

So to be in my head was not a good place.  To be in the head of my girl…  No words.

She woke up Saturday morning very unwell.  I don’t recall the last fever.  This one was 102.3 at 9AM.  Back to the pediatrician we went.  Tamiflu and 2 antibiotics.  Hit whatever it is hard, real hard, and keep her out of the hospital.  That was the plan.

So far it seems we’re on the right track.  The fever is waning.  The breathing is sometimes tricky.  The phlegm is thick.  She’s tough.  She’d hydrated.  She’s resting.  She’s doing her part.

There are decisions that have to be made while #beatingcowdens that no one should have to make.  There are guesses and speculations we have to play into, with no guide and no proven statistics.  We have to focus on today.  We have to make decisions based on today, and quality of life issues right now.  But even these are insanely complex.

We have a strong girl.  We are thankful.  We have a God who has a plan.  We are thankful for that as well.

There are times, as humans, we want to know more.  We want a guarantee.  We want insight into the plan.  It is a sign of our weakness.  We are working on it.  Our God will continue to guide us, strengthen us, and move us forward.  Be need to breathe in peace and faith.

Some days this is not an easy task.

faith peace

To our friends, please know we don’t hide.  We don’t avoid RSVPs to be difficult.  We don’t back out at the last moment because we want to.  We miss you.  We are anxious for easy, comfortable gatherings.  Life just seems to toss things in the way – often enough it gets difficult to dodge.

It’s ok if you don’t have words when we throw heavy stuff on you.  It’s ok.  Sometimes just to listen is all we could ever ask for.  Please listen.

We have not lost touch with your lives.  We understand we are not alone in challenges.  Do not feel you have to protect us by not sharing.  You trusting us, makes us feel valuable.  It makes us feel we matter to you.

See just because #beatingcowdens has overtaken our lives doesn’t mean we’ve lost touch with reality.  We want to see your baby photos, and hear about first steps, and awards, and sporting events.  Call. text, Email, write.  Know we haven’t left you for a better deal.  We, like you, are just keeping our heads above water.

We remain always, #beatingcowdens

Passing time….

So here we sit.  Again.  For the second time post thyroidectomy, we are in the hospital. meg hospital May   The girl doesn’t feel well.  She just doesn’t.  End of story.  But, not too many people seem ready to listen until she’s in a full on physical crisis.  Even then sometimes the numbers are frighteningly low. Yesterday she knew.  She NEVER tells me to stay home from work.  She KNEW.  And my pediatrician heard it in my voice.  She was admitted soon after he saw her.  He wanted it to be the flu.  In some ways I did too.  A little Tamiflu and some rest.  Buts she’s negative for flu.  No real surprise.  Too simple a diagnosis for my girl. Since her surgery in February,  her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3.  Enough thyroid hormone and the TSH decreases.  Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time.  I barely remember my own battle with thyroid hormones over 20 years ago.  The veterans of this surgery tell me 6 months, a year…  I get it.  I do. But then there is the reality of watching your kid feel crappy every day.  The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted.  And then I get impatient. impatient smiley To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck.  We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever.  She never gets fever.  Not really.  And yesterday it was 102.  Today around 100.  No answer why.  Not even the White Blood Cell Count gave a clear indicator. And the reflux.  Painful.  Like fire. Lack of desire to eat much of anything leads to weakness. fire And the throat clearing.  Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues.  The medical equivalent of robbing Peter to pay Paul.  The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI.  Girls can hope. So I sit.  We sit.  Waiting for answers to questions.  Waiting for answers to more questions than we will ever get.  But we are hopeful.  Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

They got it the second time!
They got it the second time!

The New Normal

Ok. So that normal was short-lived.  Glad I enjoyed it while it lasted.

I am trying the “don’t worry” thing.  I really am.  Truth be told.  I stink at it.  It’s true.  I try and try, but in the end – epic fail.

We finished the antibiotics Tuesday from the hospital/fever/headache thing 2 weeks ago.  She was on the mend, so I thought.

I know our schedule has been busy.  Too busy for her.  Too many things to do, every day leads to exhaustion.  My body struggles with exhaustion, but hers just can’t cope.

So this morning we went for the follow-up blood work.  The one to make sure the White Blood Cells and platelets came back to normal.  The we headed to Queens to visit my in-laws.  Two dogs, Meghan, Felix and I.

I the middle of a nice visit I noticed her resting her head on the arm of the chair.  Then, she asked for food.  She told me she wasn’t feeling too good so she must be hungry.  We fed her.  Then it all started to crash and burn.

She loves her baby cousin Connor.  But, she started backing away, not wanting to get too close to him.  Then, there was the red line across the eye.  Finally, “Daddy will you rub my head?”

And from there it all went downhill.  A cold cloth and Daddy’s magic fingers did little to relieve the pain.  In about 15 minutes time we were back on the Belt Parkway heading home.

My mind was racing.  She slept for a bit in the car, and I just kept trying to figure out a way that this could make sense.  Not even just to me, but to someone – anyone.

The last time we were in for headaches the pediatrician told me to get a neurologist consult.  Well I am working on it tonight.  God and the power of the internet have me linked up with some Cowden’s patents.  The goal is to find a pediatric neurologist who is competent and already has heard of Cowden’s.

That is of course if the immune system stuff is even Cowden’s related.  Then again at this point I am going under the theory that all this is related in some way.

Settled into bed with Advil and a 102 fever at 7pm. It promises to be a long night.  I will decide on a neurologist and have a few numbers ready to call during my lunch on Monday.  Priority.

We will see the ped at 3:30 Monday, and hopefully not  before.

Worry -it’s what’s for dinner.

Maybe I should stop looking for the old normal.  It happens so infrequently anyway.  Maybe it is all about the new normal.

Every Day is a Great Adventure!

My walking team (minus1)

Ever feel like you lived a few days all at once?  Yep.  Today would be one of those days.  From the physical to the emotional – I am shot.  And it is only the BEGINNING of the week!

We walked today, my mom, my friend and I.  When Mom picked me up this morning we were both a little grumpy.  then we both cried a little.  It just seemed wrong heading out without Meghan.  But I took some solace in the fact that when I kissed her at 6:30 AM her skin was blessedly cool to the touch.  Maybe it was over.

So we picked up our  friend, and determined to enjoy the sunshine, we were in central Park a few minutes after 7.  Professionals by now, we do all of our shopping, and gathering of “free stuff,”  then we walk it to the car so we can race pretty much unencumbered.  And Meghan, for having not been there, made out quite well in a wide array of paid items and “free stuff.”  Well deserved!

The starting line…

Manhattan was crowded as ever, but thanks to my aggressive little Mom we were up close to the front when the race began.  We moved aside to allow for the runners and then had a really enjoyable walk without the tight crowds we sometimes experience.  We got to chat and walk, and enjoy each other and the sunshine.

Holding the banners Meghan made for us

At the finish line. Aren’t we pretty in pink?  🙂

So after a fun and exhausting morning we headed home.  Meghan was so thrilled that we hadn’t forgotten about her.  I was less than thrilled to see her on the couch, a clear indicator that the fever returned.

So, just like that came the transformation from walker to Mom.  We started making plans for who would watch her Monday.  She reminded us about her friend, and ours, a neighbor who loves her like she is her own.  Meghan said, “Just ask Patty!”  So I did.  Patty will be here at 7:15.
Thinking it was all taken care of, we sent Meghan for a nap.  Restless a few minutes later, the thermometer revealed a scary 104.2.  Knowing what he would say, I had to call the pediatrician anyway.  That number is too high for me. So, he happened to be in his office and invited us to come in.  (I adore my pediatrician.)

He spent a few minutes sizing her up.  The Tylenol was starting to work and she was down to 103.7.  After an agonizing 20 minutes he sent us for blood work at a local ER.  I am not a big fan of the local hospitals, but thought perhaps a brief visit MIGHT be ok.  Not so much.

In the literally blood spattered walls of a tiny room with no access to TV or cell phone, we sat while they took 2 blood cultures and a CBC.  She admitted at 4 PM with a fever of 102.9.  They gave her a dose of Motrin.   We waited for the blood for almost 2 hours.  As I grew anxious they told me they were having trouble finding it.  Almost ready to leave, it turned up – with a terribly low white blood cell count, but nothing else noteworthy.  We left quickly, being discharged at 6:30 with 99.4, having learned/remembered 2 things.

1. It is not OK – even for a short visit, and

2. Motrin – Motrin – Motrin

We had a hard time deciding who got to shower first as we cleaned off the filth we had just been in.  Dinner, some TV, WINE(for me – not her!), and it was off to bed.  Fever free at 8:30.

Headed up now for the 11PM Clindamycin.  Who knows what tomorrow will bring? Every day is a great adventure!

Race for the Cure (minus 1)

It won’t be nearly as much fun without my biggest fan!

Tomorrow morning I will gather in Central Park with some 25,000 other runners and walkers, survivors, and friends and family to support the Susan G. Komen Race for the Cure.  This will be my first race in a pink “survivor”  T shirt, insisted upon by Meghan, my biggest fan.

This was our year.  I registered Meghan as a “real” walker.  She got an official race day T shirt, and a number too.  She was so proud to be walking with her Mom, and Grandma – two “survivors.”  She was thrilled to be registered, and wear a number.  She was looking forward to waking up super early. 

Except, she won’t be coming.

At 6:30 tomorrow morning my Mom will pick me up.  We will each wear a special banner designed by Meghan.  We will pick up our friend, another survivor, and we will head to Central Park.  The car will hold one less this year, and if I might say so myself,

I thought it all day.  I thought it to myself.  I even hid in my room and cried a little, ok a lot.  I had quite the pity party going for my girl.  Asking over and over WHEN she is going to get a break, and WHEN is something going to go her way, and WHY can’t she seem to just have some fun when her HEART and SOUL are ALWAYS looking out for other people.  And, not to be surprised, she never said once all day that it wasn’t fair.

She encouraged me to go, even without her.  She said she was sad, and disappointed, but we made a date for the American Cancer Society walk on Staten Island in October.

She is asleep on the couch right now with 102 fever.  She woke up great this morning.  By noon she was developing a fever.  She was complaining of a headache.  By 2 PM she had cleared 102 and we headed out to the urgi center.  After an OBNOXIOUS 3 hour wait, we left with the diagnosis of  (“It’s probably”) strep, and (maybe) and ear infection.  I sometimes wonder if they train to be meteorologists, and end up as doctors – probably…maybe… UGH!

He second dose of Clindamycin will be at 11PM.  By noon tomorrow we will know if it was bacterial or viral because she should feel much better, and the headache – that always scares the CRAP out of me, should be gone.

By noon tomorrow I will be home.  Back from my race.  Full of conflicted emotions.  I have been to this race almost every year since 1998, but Meghan kept calling it my “first” race.  I will be glad to be with my mom and my friend, but really, what good is any race or celebration without your biggest fan?

Race for the Cure Logo