Prayer Circle

There are a lot of people who pray for Meghan.  And we are grateful for every single one of them.  But, there are a special group of ladies…

Well, between them they have 9 children – 3 each.  They all have incredibly busy lives, and all of our lives connected some years ago.  We don’t see each other all that often, and rarely in the same place, but they are my prayer group of sorts.  Our children are connected, in a bunch of different ways.  Our lives are intertwined, and we have vowed to support each other.

We all seem to share the belief that –

Ultimate-reality-check

And, with that belief comes responsibility.

So, they were among the first people I shared my blog with in its infancy last year.  They are the ones I turn to and say… lift this up…  PLEASE, and without fail it is done.  And they do the same for me.  We all pray fervently for each other.  For friends, and family.  For people we know well, and for people we haven’t met, and for people we may never meet.

We pray because we believe it works.

We pray because we have seen it work.

Last spring when my sister’s dear niece was knocking on death’s door – felled by a virus of unimaginable strength, we (along with countless others) prayed.  And we witnessed nothing short of a miracle.

The day of my mastectomy, wracked with fear – terror actually – my cell phone rang as I was checking into the hospital.  My brother-in-law, a Lutheran minister was on the phone at 6AM, ready to pray with me.  As the tears rushed down my face I felt the calm envelop me.

Prayer is powerful.

But, it doesn’t always take worry away.

sleeplessSo tonight, as I struggle to sleep, I will think of them with gratitude.  I will also think of the countless others – those we know and those we don’t, who are lifting my little girl up in prayer.

Tomorrow we go for the biopsy.  Then we wait.  I am not sure which part we will need your prayers for most.  But, please – whatever you believe, remember us this week…

life doesnt get easier you get stronger

No such thing as coincidence

I woke up this morning earlier than normal, and that is not like me.  Worry had taken its toll on me through the night.  I was up and showered with plenty of time to get Meghan to Sunday School.

She woke up sore and stiff – some combination of a difficult swim class, and her body’s realization that it had been two days without Celebrex.  That is her “wonder drug,” the one that keeps her moving pain free.  She needs to be off of it until it is determined if she will need thyroid surgery.  The pain will progress.

Still, determined, she struggled through getting dressed and found her smile before heading out the door.  She looks forward to church – the lessons, the children, the teachers.  She adores them all.

As I headed home to wait out her class I heard a song on the radio that I have heard many times before, but today Matthew West‘s “Strong Enough”  spoke to my heart.

If you don’t know the song, its worth listening to, but some of the words that spoke to me; “I know I’m not strong enough to be everything that I am supposed to be.  I give up.  I’m not strong enough… Hands of mercy won’t you cover me, Lord right now I’m askign you to be Strong Enough for the both of us…”

Tears streaming down my face I headed home.  I am always thankful and amazed when the song  I “need” hits at exactly the right time.

As Felix and I headed back for the 11 AM service I reflected on the week in front of us.  The biopsy looms large.  The results even larger.  Sandwiched in between is an appointment for my spleen.  Busy week for the Ortegas and their ever troubled organs.

I had Emailed the pastors to let them know of Meghan’s biopsy.  They have done such a wonderful job helping us feel at home, even as we are technically “guests,” that they have made it known to us they appreciate being kept “in the loop.”

This morning during Church I was introduced to a Moravian Custom.  Appranetly early in the year everyone chooses a scripture verse from a large basket.  They called it, jokingly,” Fortune Cookies, Moravian style.”

We were told that this passage would be our “watchword” for the year, and that we would would see God’s work in our lives through the scripture.

I said a quick prayer to God to send us something good.

As usual, He did not disappoint.

For Meghan – Hebrews 11:1 – “Now faith is the assurance of things hoped for, the conviction of things not seen.”  For my Meghan, a verse to define the abstract “faith” that yielded lots of good discussion today.

For Felix, a verse from Job 37:5 “God thunders wondrously with His voice.  He does great things we can not comprehend.”  A reminder to the strength of our family, from Job who suffered so.

For me, Psalm 116:2 – “What shall I return to the Lord for all His bounty to me?”  The reminder to continue to “Pay it Forward,” and to remember even on the tough days, I am so blessed.

The prayers of the church lifted up my little girl, and she sighed.  So pleased to know the larger community sees her needs.  She has such a long prayer list of her own, that to be remembered and prayed for clearly touched her soul.

I left church to a hug from the pastor, who is also a mom.  As I looked into her eyes no words were needed, and meaning was clearly conveyed.

Despite our rough times… God is good to us.

I heard the Matthew West song again today.  I didn’t cry this time.  I just took a deep breath.  “I don’t have to be Strong Enough….”

There are no coincidences.  Only the hand of God through the power of the Holy Spirit, ready with exactly what we need, when we need it.  Truly amazing.

God’s got us covered.

By this time Tuesday we will be awaiting results.

Patience and Wisdom

I am patient – sometimes.

I am also wise – sometimes.

The trick really might be meshing the two.

patience and wisdomThat’s where I sometimes have some trouble.

I got a call this morning from Dr. S.  The biopsy is scheduled for Tuesday at 12:45.  Pleased to have it scheduled, quick math told me it would still be a week before we had  a definitive answer.  But at least I had the wisdom to shut my mouth and be grateful to have it scheduled.

My next question was about anesthesia.  Had they decided to give it?  In FNA (Fine Needle Aspiration) thyroid biopsies, anything more than a numbing lotion is uncommon.  But Meghan had such TRAUMA from her FNA at  another hospital in November of 2011. We had to push.

I had just told this child she could have cancer.  I just told her she was likely looking at another surgery.  She was unaffected.  “I will have whatever surgery I need to.  Just make sure I don’t have to be awake when they put those needles in my neck!”

This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.
This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.

All day I carry my phone everywhere.  I literally put it down for 3 minutes and missed the call about the anesthesia.  So the voicemail said, “We need Meghan at the hospital at 9AM tomorrow (Friday) to clear her for anesthesia.”

“When?  What type?  Why?  I can get you a cardiologist report from December.  I can be to my pediatrician in 30 minutes, and you just took blood on the 27th.”

“No, we have to see her here at 9Am.”

Patience and Wisdom.

I had pleaded for the anesthesia on her behalf.  Now I would pay the price.  Very careful not to take days off after my attendance debacle last year – I guess I will be at Sloan tomorrow,  ensuring the anesthesia my kid asked for is in place.  She doesn’t ask for much.
PatienceWorking hard on gratitude, I am relieved at least things are moving.  Not on my schedule, but progress nonetheless.

So then my oncologists office called.  They want me to see the surgeon.  The surgeon we first talked about a month ago.  The surgeon who had little more information than he had on December 7th after my MRI.  The surgeon who insisted he needed the sonogram, but whose system at the hospital cannot upload it.  No one thought to send me for another abdominal sono at their hospital – even though I asked.  They would like me to see this surgeon at 10:30 Weds.  They will have to have patience now.  I have a kid to take care of first.  If they were in such a rush I could have been healed by now.

So I am waiting still to hear from my car insurance carrier who somewhere in the midst of all this chaos decided I was totally responsible for the accident where I suffered a DIRECT HIT from a car who took no action to avoid me.  Waiting to hear exactly who that letter of appeal gets addressed to.

All of these things that keep happening, keep me from seeing my Grandparents as often as I would like to.  My heart weighs heavy.  Time and stress are hard to manage.

patience-buddha1-300x248

Patience, I am convinced – is more than a virtue.  It is down right necessary, and almost debilitating with exhaustion.

Patience for me is hearing, “It is likely your child has cancer,” and then WAITING to take care of it.

I get that in the scheme of things thyroid cancer grows slowly, and 2 weeks won’t make or break things. But this is my little girl we are talking about.  May God bless me with the patience to get through the weekend.

hand ove rmouth

And give me WISDOM with that PATIENCE too please?
And give me WISDOM with that PATIENCE too please?

Waiting…

I am waiting.

Still.

I am tired.

I am angry.

I purposefully picked the best hospitals.

I searched out the best doctors.

My goal was to avoid useless waiting.

angry phoneInstead I spend days at a time looking at my phone.

Waiting for it to ring.

I think my new case has marks from the imprints of my hands.

I don’t know what I want… but I want to get out of “the waiting place.”  I spend too much time here and its unhealthy.

An excerpt from one of my favorite Dr. Seuss books, "Oh the Places You'll go!"
An excerpt from one of my favorite Dr. Seuss books, “Oh the Places You’ll go!”

Thursday they said the biopsy should be scheduled by Friday or Monday.  It’s Weds. at 7:30 PM.  No worries.  I have called.  It didn’t help.

It’s a small nodule, the one they are concerned about.  It is less than 2cm.  But, excuse me for being anxious -even 10 year survival rates of about 95% serve as little consolation when the numbers refer to your little girl.

And what about my damned spleen?  Clearly not a medical emergency, but the holidays messed with the waiting there too.  I was told 9 days after they received the CD of my sonogram that it was blank.  Really? 9 days?  No word back from them about a plan either.  I especially loved the part right before Christmas when my oncologist told me hamartomas are “almost always benign.”  Great.  See, prior to that conversation, I thought they were ALWAYS benign!  UGH!

I am trying.  And I will be fine.  I guess some days I am allowed to be tired and grumpy like the rest of the world.  As long as I remember…

dance in the rain

Better get some loud music and another glass of wine.  I think I need to dance the wait away!

The Changing of the Calendar

Every year, this same week, I sit down with my calendar, and one for the following year.  I carefully transfer all the important dates I need to remember.  I write the birthdays, anniversaries, and other important “days to remember.”  There is probably some much more high tech efficient way to do this on my iPhone, but this is a job I am not looking to simplify, or give up.  I enjoy the time spent reflecting on the year that passed, and wondering what the next year will bring.


calendar

During the course of the year, around all the birthday and  anniversary reminders, the basic events of life fill in the blanks.  I can look back on some weeks, and months – where there doesn’t seem to be an empty box, and wonder how we got through.   There are the basics, PT, swimming, dance class, music class.  There are some parties, and celebrations.   Around them are peppered annual exams, like the cardiologist and the eye doctor.  There are some “sick” visits with the  pediatrician in there too.

Celabration Cake.2 003

But last year was a “special” year.  Between us there were three surgeries.  Tonight as I reviewed the calendar I saw a higher than normal number of pre and post op visits.  I saw consultation appointments with surgeons, and each month seemed to remind me of a surgery that was, well life changing in its own way.  There were certainly a lot of firsts in 2012.

surgeon5bl8

And, sadly there were some lasts too.  I couldn’t bring myself not to write GGPa’s birthday on the calendar.  It would have been in just a few weeks.  Instead I wrote it with a heart around it.  This year he will have his cake among the angels.  Nor could I stop myself from remembering his and GGMa’s anniversary the same way.  It didn’t feel right to leave it off.  I am sure she will appreciate a call or an Email anyway.

GGPa, GGMa, Grandma, and Pop (left to right)
GGPa, GGMa, Grandma, and Pop (left to right)

I remember lots of birthdays on my calendar.  Some for the very young, and others for those quite senior folks I love so much.  But, even as I ink those special days into 2013, I know there are no guarantees.  I know that my writing their special date doesn’t ensure that we will all celebrate together.  It is reality.  It is sometimes tough to swallow, but we are not in control.

In Newton Connecticut many young lives were tragically altered.  “Calendars” forever changed.  No rhyme or reason.  No notice.  Gone way too soon.

I attended the wake of a colleague tonight.  A 45 year old, happily married father of three.  He died suddenly Christmas Day.  I can not say we were “friends” outside of work, but I can tell you not a person that met this man easily forgot him.  His every breath was consumed wither with song, or words of his love for his family.  And tonight as I paid my respects I carried a heavy heart, and the reality again, that there are no guarantees.

Meghan was sick this morning.  Sicker than I have seen her in quite some time.  I was home alone, as Felix works this whole week before New Year‘s.  As she lay screaming on the bathroom floor, begging me to make the pain stop, I was terrified.  I called my sister to bring me Pedialyte and some essentials.  We lay there for quite a long time, at points her eyes were rolling – reacting to the pain in her stomach.  I held her as best I could and I prayed, hard.  I needed guidance.  I needed answers, and I needed that pain to be relieved.  He heard me, as He always does.  She vomited several times over the next hour or so, eventually ridding herself of whatever she had eaten that was bothering her.  I hadn’t seen that agony since the days of the gall bladder attacks when she was three.

We had had plans today, to celebrate my grandparents 67th wedding anniversary with them.  Even as the color came back into her cheeks, and the spring back into her step. we stayed home.  The lunch date that was on the calendar – unattended.  Our warm wishes sent with a phone call instead.

Grandma and Pop in December 1945
Grandma and Pop in December 1945

The calendar is a nice guide.  A road map of sorts.  It tells us where we hope to head.  But, as every day reassures me – it, like life, offers no guarantees.

This week the phone will ring.  Appointments will be set.  A thyroid biopsy will be scheduled.  A surgeon for my spleen may even get written in to the calendar as “consultation.”  2012 for us will end as it began.

Although as I tossed the calendar into the trash tonight, I couldn’t help but feel… somehow older, wiser, and even more appreciative of those who somehow come across my calendar each year.

55-one_year_larter

 

Two of a Kind

The upside of waiting I guess, is that it gives me a bit of time.  Since I can’t concentrate, I multitask.  Simultaneously taking down the Christmas decorations, while doing laundry and eating chocolate chip cookies with white wine.  Seems like a perfect time to stop and blog.

1337577_wine_swirl

A few months back I posted about Meghan‘s necklace.  The one that we had had created, just for her, inspired by the Global Genes Project logo of the denim jeans.  She received it in August and was so thrilled.  She wears it proudly and looks at it as a platform to explain to people what it stands for.

Meg necklace

Her goal in having it created was to ultimately have the Global Genes Project sell them as a fund raiser.  She has this hope that her idea will ultimately raise money for rare and genetic disorders.  I think she is right, and eventually they will get to selling it.  Although the holidays are a crazy time and a lot of major things have been going on at the Global Genes Project.  They are a super organization.  Working to the benefit of all of us who are affected by rare genetic disorders – in our case, Cowden’s Syndrome.

This fall she had my friend’s husband – who created the piece, engrave hers.  It says “August 2012 – First of its kind.”  How appropriate.  I am quite sure my girl is the “first of her kind” as well.

Because, she decided she wanted me to have one too.  A necklace like hers.

necklace 1

“After all Mom, you didn’t just have breast cancer.  Cowden’s Syndrome is what we will both have – forever.”

She’s right.  As I gulp the last of my wine.  We are at this forever.  Together.  And as much as it flat out stinks, I wouldn’t want to share forever with anyone else.  She is one awesome little girl.  Each of us 1 in 200,000.  Lucky enough to have each other.

Two of a kind
Two of a kind

 

 

 

 

What a Day!

I am getting a bit fatigued by all the positive stories I tell myself.  All the ones where everything works out just fine, and we get a bit of a break from doctors and surgery and chaos and worry.

I think I am getting tired of them, because I am starting to doubt if they are true.

The waiting room in the pediatrics department.
The waiting room in the pediatrics department.

We began the day at radiology at MSKCC in NYC.  The thyroid sonogram took longer than it should have.  I knew that.  I also knew when the doctor of radiology asked to speak to me alone that the news wasn’t great.

The nodule they were concerned about in June still has them worried.  Despite there being MANY other thyroid nodules, this is the one that is of concern.  I have every reason to believe it is the same nodule that caused concern when we had the horrendous biopsy at the other hospital a year ago.  The doctor told me right there it had to be biopsied.  She didn’t even wait for us to see Dr. S.  (See the appointments are set up so you go to radiology an hour and a half before you go to the doctor.  Then the doctor usually reports on the findings.)  I knew this was out of order, and it spoke to the seriousness of it all.

I explained that Meghan‘s biopsy last November was the most traumatizing experience of our medical lives together.  We have been through a lot, but watching that radiologist YELL at her to be quiet, and then BURN her neck with the numbing spray… well it was too much for any of us.  She will need to be sedated I said.

We went upstairs for our appointment with Dr. S.  Before that Meghan met with one of the Child Life Specialists, and gave over 2 shopping bags full of toys.  The woman was in awe, and I was just so proud.

We checked in for our visit with Dr. S. and we waited.  While we waited I spoke.  Candidly.  I had to be the one to tell her they were looking for cancer.  I had to tell her they were going to biopsy again.  I had to tell her I was TRYING to get her sedation, but I couldn’t promise.  She swallowed.  She stared at me.  She took it all in.  Then she reminded me I should try REALLY hard for sedation with the biopsy.

We saw Dr. S.  No new information, except that she grew a few inches and lost a few pounds since June.  HE said she is OK right now, but he doesn’t want to see her lose any more.  I chuckled at the school notices I always get home calling her obese.  Dr. S.  reexplained what I had heard in radiology.  He reassured us that  even if the nodule is malignant it is small, and not likely to need more than a thyroid removal.  Some comfort… but not a ton, for my girl still growing.  We were advised to take the first available biopsy appointment.  And we will.  I should know in a day or so when that will be.

american girl

Once we checked out it was on to the American Girl Store.  WHAT A CROWD!  Not being crowd people, either of us, we navigated the store and Meghan picked up some essentials – like a backpack and an allergy safe lunch for her new doll.  The doll got her ears pierced, and we were out the door.

Daddy at work.
Daddy at work.

We headed up to see Daddy at work.  We got a close look at the New Year’s Eve ball, and the view never gets old, no matter how many times we see it.  Meghan LOVES seeing Daddy at work!

Family shot in front of the New Year's Eve Ball.
Family shot in front of the New Year’s Eve Ball.

45 minuted to get the car out of a midtown lot.  We arrived home to 2 dogs that just weren’t able to wait until we got home.  Upstairs floor cleaned.  Two glasses of wine gone.  Some type of leftovers for dinner.  And tomorrow we get to wait by the phone again.

Good thing we are always ready for a fight!
Good thing we are always ready for a fight!

Maybe in January the Ortegas should resolve to lose a thyroid and a spleen?  One each?  Really???

Tonight Cowden’s Syndrome, I will thank you for my gray hair, loss of appetite and generalized anxiety.  Cut us a break… please?

Nerves of Steel

I mean no disrespect to the “Man of Steel,” but I think parents of kids with chronic illnesses have it more difficult.

Man-Of-Steel-man-of-steel-32092248-1024-768

We need “Nerves of Steel.”

NervesOfSteel_DOS_title

I am trying to settle in to bed.  Tomorrow bright and early we head out for the thyroid sonogram and appointment.  My stomach is twisted in a million directions.

At this point I should be calmer.  I should relax, and have faith – as I am sure that everything will somehow be alright.  Yet, still, it is so hard to keep your mind from wandering.

chronic illness

I will take it all, every illness, every horrible twist and turn that this wretched Cowden’s Syndrome will toss at me.  Just PLEASE… leave my kid out of it.

Today we stayed home.  The three of us, (and Allie and Lucky) as a family.  We did some work, and we rested.  We also did a little bit of shopping.

My girl had only three things on her list for Santa.  She asked for an American Girl Doll, a dog ring, and money to buy toys for the children in the hospital.  Santa left her $100.  Today she carefully selected some toys, “a kid stuck in a hospital might appreciate.”  And she would know.  She has spent her share of time stuck in a hospital.

These are the toys she picked out for the kids in the hospital.
These are the toys she picked out for the kids in the hospital.

Such a great kid.  I am just so proud of her compassion.  We are blessed.  Please, dear God… hold us close tomorrow.

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

 

Maybe it wasn’t a “Total Loss”

The Insurance Agent called Friday night.  He told me my car was a “Total Loss.”  I think I knew that after I saw this picture the first time, but it was still a little hard to hear.

I really did love my Hyundai
I really did love my Hyundai

Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me.  To me, a “Total Loss” means I didn’t learn anything.  It was a waste.  I took nothing from it.  That couldn’t be farther from the truth.

I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day.  Sometimes what I take away is positive, and sometimes – not so much.  But I always, always learn something.

1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.

2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.

3. When you ride in an ambulance its less scary when you take someone you know.   And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all.  There are real live angels among us!

4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls.  Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.

5. There are some really really nice insurance people, and some really obnoxious ones.

6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.

7. The pain is worse before it gets better.

8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride.  Especially when you know you handled it right.  It  is hard to get over hurt pride, but you can find peace with a clean conscience.  So glad I have one.

9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you.  It’s all about the stop sign.

10. Whiplash, and muscle spasms are real.  Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.

11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us.  (Thanks Angel Meghan… and all the others)

12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.

13. Fax any important test results to a doctor you trust.  I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please.  The hamartomas are growing.  I will talk to my doctor at NYU this week.

14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess,  I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps.  I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf.  I have parents in my school fully supporting me and working to gain signatures on a petition.  Their children’s lives are in danger every day.  I want some things to change to make the children safer.

15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant.  Always marry someone with a sense of humor.

16. Wear your seat belt!  Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either.  So glad I was buckled up.

17. Those silicone implants can take a good hit.  Thankfully – nothing popped!

18.  I am not going on the teacups at Disney World ever again.  I have had enough spinning for a life time!

There… not a “Total Loss” at all…

to-be-continued

Christmas Letter 2012, and some unexpected happenings

Disney – August 2012

This is the letter I send in my Christmas cards… shared for my “on line” friends.

“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34

December 2012,

Dear Friends,

It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus.  This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.”  Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.

Life in the Ortega house continues to be one of adventure.  We are blessed.  Meghan excels in school, and loves to swim and dance.  Medication allows her to move her body without pain.  We are grateful each day for each other, as it is that bond that allows us to weather the storms of life.  And there have been some this year!  Some time in early spring, Felix joked that I should start on my Christmas letter.  He wasn’t kidding.

We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”

We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist.  We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ.  We have been scanned repeatedly – each MRI separate.  Sonograms of every body part you can imagine.  All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.

There is so much overlap as to how everything came together this year that it is even hard to summarize.  I feel like sparsely a week went by without an appointment – many of them in NYC.  I laugh now at the days I swore I would NEVER drive in the city.  I don’t use the word “NEVER” much anymore.

In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee.  The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap.  We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.”  Again, not if, but when.  So we wait.  She will be scanned again in February to determine the status of the very stubborn AVM.  Cowden’s Syndrome complicates any vascular anomalies.

In March I underwent a “prophylactic” bilateral mastectomy.  After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step.  Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction.  The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast.  The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.

Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later.  A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy.  So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.

A month later we took Meghan for her thyroid scan to Sloan Kettering.  We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area.  So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.

Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney.  Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists.  I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!

In the midst of our medical “stuff,” life continued around us.  In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan.  A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed.  Our hearts will never be quite the same.

Meghan and GGpa

Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps.  No one is quite sure exactly what happened, but it is evident that the angels held her that day.  She suffered a serious head wound, and severe bruising, but broke nothing!  She spent days in ICU, and returned home the end of that week.  With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day.  I admire my grandparents.  As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it.  They are role models to us all.

Love my Grandparents!

Their marriage reminds me that God gave me a great gift when he sent me Felix.  I can say that we share such love through God’s grace – that I can not imagine my life without him.  He is my soul mate – and my sanity!

I guess I leave you with – to be continued.  No words of wisdom this year.  We are trying our best to take it one day at a time.  The tree is up.  We have our hearts and our heads focused on what matters.  We certainly have had plenty of lessons!

We would love to hear all the things that are new in your home!

Warm Christmas Blessings,

Lori, Felix, Meghan, Allie & Lucky Ortega

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story

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See, and just when I thought it was safe…

The cards were in the mail Sunday night.  I was getting it together.

Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.

I stopped at the stop sign.  I looked to my left down the one way street I have traveled so many times before.

I was clear… and I drove.

3/4 of the way through the intersection…

I really did love my Hyundai

I didn’t see the SUV until it was in my rear driver side door.  I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.

His car ended up a block away.  There had been no braking.  No horn.  The impact shut his car down.

As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.

The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.

I have laughed and cried a lot over the last 24 hours.  I am grateful that I am walking and moving.  I am tolerating the muscle spasms and bruising.

As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood.  What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.

The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to.  Maybe… just maybe.

So I think of my little love.. and I am so happy she is safe.  And maybe that thought is where I will draw my peace.

“Sometimes your blessings come through raindrops…”

Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….

Anyone else looking forward to 2013?