HELLO DARKNESS MY OLD FRIEND

Hello darkness my old friend, I've come to be with you again.

A couple days ago I got a call from Jack's doctor, he had been approved for Trikafta.  The game changer as the CF community calls it.  The miracle drug.  The call I have been waiting for for 22 years.

Let me back track a little bit.  Jack and Kate were diagnosed in March 1998.  Diagnosed with Cystic Fibrosis.  I remember vividly sitting in the Dr. Quitell's office at Columbia Presbyterian Hospital in Washington Heights.  One month early, I had taken Jack ,who was seven months old, to Columbia for a chest x-ray.  He had been so sick. Dr. Quitell, by some miracle, was the attending.  She was also the head of the Cystic Fibrosis Center at Columbia.  She said "I do not think Jack has CF, but I want to do a sweat test.  Do not read anything about this in the meantime".  I followed orders, I had no idea what Cystic Fibrosis was. Well not until Jack failed the sweat and I was sitting in her office.  The first thing Dr Quitell said "Mrs. Clark many  children CF reach their 18th birthday now and some go to college."   Tears streamed down my face, all I could say "what are talking about?".  The rest of that day is a bit of a fog.

I got home.  I hit the internet, I tried to find evidence that she was most certainly mistaken, my son, and my unborn child did not have CF.  Yes I was expecting Kate and she too would be diagnosed with Cystic Fibrosis.  I called Dr. Quitell daily.  Finally, one week in, she said "Mrs. Clark I promise when there is news of a cure, I will call you."

I am not a very patient person so while I waited for her call, I told our story.  My community, my friends, people I never met came out to support our family.  They came to walks, golf outings, cocktails parties.  Their compassion and willingness to give to this day amaze me. And I am forever grateful.

Along the way, I met Frank DeFord.  He is famous sports writer, his daughter died from CF at 8.  He continued to fight, raising money and awareness.  I met Boomer Esiason, who had chosen to support Cystic Fibrosis as a player for Cleveland. In a twist of fate, three years later, his son was diagnosed with CF.  He has worked tirelessly to raise money and awareness since that date.

The years were harder than I imagined.  Jack is no stranger, to hospitals.  Throughout his twenty two years, he shown me how to handle disease with grace, dignity,  perseverance, and courage. 

Almost twenty two years  to the day he and Kate were diagnosed, I got my call.  Well it did not go that smoothy, in the past two weeks there have been a few phone calls, tears, direct conversations, but yes I got my call.  Yesterday at 10:30 the Fedex guy showed up at rag & bone and delivered Trikafta.

Trikafta, it's been called the game changer, the miracle drug, giving most with CF a chance at a future.  Why I am terrified?  This is it.  This is all that is coming in Jack's lifetime.  What if it's not our miracle?

I've been very honest about my belief in God in my blog, depends on what day you are talking to me.  Today I believe. I believe in faith. I believe in hope, I believe in love, I believe in thoughts, I believe that collectively, we can accomplish anything if we try hard enough.  So take a minute today. Do you know someone battling a life threatening illness, addiction, depression?  Take a moment and think of them, believe for them, hope for them.  Believe their game changer is on the way too.


#cysticfibrosis #trikafta #boomeresiason #live #cff #BEF #ccf #cure #fighton #Cysticfibrosisfoundation #tastesofsalt #lungs #lungfunction #vertex

This post is from 2010... This is the beginning...

This is my story.

Samantha, 15 going on 25.. nickname HRH. Jack, skateboarder, and Kate always has her head buried in a book. Jack and Kate have Cystic Fibrosis a genetic terminal disease.

Jack is no stranger to hospitals. At six we learned Jack, in addition to his CF, had Chronic Pancreatitis. He spent 9 weeks in the hospital.  He went through numerous invasive tests to try and determine the cause of his Pancreatitis, and get it under control.  He was on TPN.  He could not eat or drink.  Every line they started, failed, he was losing weight, he was in pain and no one seemed to have an answer.  He finally had Dr. Stevens from the Adult side of Columbia do an ERCP.  There was nothing he could do for Jack.  They made the decision to put in a Provac Port and send him home. While this port enabled us to bring him home, if it caused an infection because it was not properly prepared, the infection could be fatal.  I was assured we would have round the clock nursing.  So we left the hospital one day before Christmas.  Round the clock nursing was not available, it would be me, with no medical training whatsoever, that would take care of jack and this port for the next six months.  Tears rolled down my face as John, my favorite nurse in the universe, came to my house to show me how to take care of Jack.  I was terrified.

Since then Jack has been hospitalized seven times. This blog will start with the most recent. In early december Jack started to show signs of another pancreatic attach. After being up all night, and a 15 hour stint in Columbia's ER, Jack was diagnosed with another episode of Pancreatits. He spent two weeks in the hospital trying to get it under control. Finally, with no sign of the attach ending we put a Picc Line in. A picc line goes from his arm, through a main vein to his heart. It by passes his digestive system, so the pancreas can rest and heal. Only in the US can you leave the hospital with a Picc line.  Whey?  If they cause an infection, the infection can be fatal.



Jack developed a fever two weeks after the picc line was put in.   I at first thought, hoped, he had the flu. Two days later and 48 hours into our stay at  Columbia's ER Jack was battling a life threateng infection. He had sepsis.  I have never seen Jack so very sick. He is currently at Columbia on high doses of IV antibiotics. We are going to attempt a NG tube rather than another picc line (the last one has been removed due to his infection). Through this all Jack amazes me. He is strong and thoughtful and accepting of everything coming his was. 48 hours into our stay at Columbias ER (No beds available), Jack turned to me and apologized to me. I asked why he was apologizing.. he said I am sorry you have to sleep in a chair. I had been strong up until then.. but at that point I burst into tears. I love this child with all my heart, and will do anything and everything for him.

This blog is not for everyone so stop reading if you do not want to hear how I truly feel. I often wonder how I will ever be able to leave that hospital without Jack. I do not think I can walk out the doors without my son

BOOKNOTE: This is the first I have read this post in two years.  Its hard for me to read this.  It brings me straight back to those long nights first in the ER,then in the  towers of Columbia Presbyterian Babies Hospital. Let me explain, at Columbia the only way to get admitted is through the ER. The ER is in Washington Heights in NYC.  Legally anyone who shows up gets treated. The result, it is a mad house.  So when Jack gets sick, we know we are going to spend a time in the ER. My shortest stay was 1 day, my longest was 4.  The ER is hell.  There is no privacy, very little care provided and no place to go. You sit in a chair, next to your child's bed and wait. Wait for those beautiful "Mrs. Clark we have a bed for Jack in the towers."

Then its off you go the towers.  Its really hard to explain what life is like for a chronically ill child and his family.  When I am with Jack I feel guilty for not being with the Girls.  When Im the girls I feel guilty for not being with Jack.

The hardest part for me, in going back to read this blog, through out it all I can feel my fear.  My fear that like other mothers before me, I would have to walk out those doors without him.

I am happy have this.  It's a record of our story and there are so many others like us.  Its a mothers natural instinct to protect her child at all costs.   To be faced with the fact you will lose this battle, its just a question of time is overwhelming.



I try to be like Jack and live everyday to its fullest, especially the days we are NOT at Columbia.  But its not always easy.



Thank you for reading our story.

It's been a while....

Four years to be exact.  He is 21 now.  This is a birthday there are times I did not think we would celebrate.  I am not saying it has been easy, it has been anything but.  Jack came within hours of spending his 21st birthday in the hospital.  It is his pancreas.  That fucking pancreas that just will not give in.  We have been fighting this battle with Jack's pancreas since he was six.  That hospitalization lasted 2 months, we left two days before Christmas.  Not because was better, essentially they gave up.

Fast forward twelve years later, two many hospitalizations to count, ports, pic lines, IVs and a lot of morphine we are still fighting.  Jack is a rockstar.  He is everything I am not, calm, patient and forgiving.   He is smart and handsome, can skateboard and snowboard like a pro.  He is surrounded by two sisters, a mother, father and slightly over weight lab that adore him.

I am not forgiving.  This time, this last hospitalization, by far the worst.  He was on the edge.  The pain would not subside.  He was knocked out.  He was tired.  I was broken. I was scared. And I am mad... Fuck CF.

I have always shared his story.  Tonight, this is mine.  I am single.  I have been divorced for nine years.  My ex-husband is remarried.  She is lovely.  She loves my children.  I love my children.  I love my lab.   I sometimes love my job.  It was so difficult for me to trust anyone with my children.  So I did not.  

What I do have is a wonderful community of friends that embrace me, Jack and the girls.  Their love, support, lego and prayers ... well they have helped.  They have helped more than they will ever know.  It's lonely.  You come home from the hospital and face all your fears alone.  So yes something as simple as reading the words... "we are thinking about Jack!"  They make a difference.. keep "em coming.

TWO YEARS AGO TODAY

TWO YEARS AGO TODAY

Two years ago today we were at Stratton in Vermont.  Sam, me, Jack and his friend Jake.  We had checked into this great condo on the mountain the night before, we woke up to 5 inches and it was still coming down.  We parked in Lot 2 and headed to our locker.  That day the snow came down at a rate I have never experienced.  The whole mountain was un groomed and we were having the ski day of our lives.

Sam and I battled the snow till 3, exhausted we headed for the condo. Our car, in Lot 2, was buried under 16 inches of snow!  Jake and Jack literally took the last lift, just refusing to stop.  By the time they made it back we had a fire going.  All anyone could think about was what a great day tomorrow would be at Stratton.

I have been skiing at Stratton since I was 8 and so have my kids.  I was so tired of Build a Bear,  that I called Stratton Real Estate rented a house for the season and enrolled them all in ski school.  They were 6,5 and 4.  The first day of ski school,  I went to pick Jack up on the magic carpet and very cute instructor told me Jack was on the chairlift.  I said, are you out of your mind, it's his first day.  They replied, he wanted to go.  Jack would probably ask you to go heliskiing if he thought you would let him.  You have to learn to say NO to Jack.  But there was no stopping Jack.  He switched over to snowboarding immediately.  I cried as I called the ski school saying Jack wanted to snowboard, sure they would throw him out.  The said "Mrs. Clark what ever you drop him off with, we will teach him on."  The rest is history.  Jack was on that board 40 times that winter and the winters following.  He quickly discovered the woods and terrain parks.  He was passionate about that board.  Which is why what happened next was so devastating.  Stratton had always been such a wonderful place for our family.  We where there for the week, sixteen inches of fresh snow and more on the way.  Looking forward to another great day.

There was nothing great about the next day.  Jack woke me up at 6 am.  He was having an episode of Pancreatitis.  We, as a family, had dealt with this since he was 6.  But this time was different.  This had never happened in Vermont.  I had a four hour drive home and had no idea how I was going to get him off that mountain.  Pancreatitis is excruciating.  The first thing they do, hook Jack up to an IV and pump morphine into him.  Well most mothers worried about Asprin. I was pumping my son full of morphine from the age of 6.

Sam took control of packing the car,  I called Jack's father and then gave Jack two Motrin PMs hoping the car ride would be bearable and we headed for home.  Right away the engine started to overheat.  I pulled into a gas station and looked for help.  Two woman came to my rescue and filled the car with coolant while I stood there tears streaming down my face explaining  had to get my son to the hospital.  Once we were on the road again, Sam turned to me and said "Mom you have to pull yourself together!"  She was right.

We got home and I got Jack to the hospital, we had switched hospitals and this was our first stay at Westchester Medical.  Getting admitted could take days at Columbia.  But Westchester was more efficient.  When then nurses took Jack in and asked what was going on, I told them he has Pancreatitis. They did not believe me, they never do,  he did not seem to be in a high level of pain.  Jack learned early on how to manage his pain he hated the hospital.  They asked me how I was so sure.  I explained since the age of 6 Jack has been hospitalized more times than I can remember with pancreatitis.  They pushed for more details.  Like was the pain coming from his lower back.  I responded by telling them I knew he had pancreatitis because he gets this look in his eyes.  Surprisingly they believed me and hooked him up to an IV and started the morphine before the blood work which would confirm he pancreatitis came back.

The blood work came back, I was right.  One of the few times I wish I were wrong.  Jack got admitted and we settled in for a two week stay. This stay went pretty smoothly, two weeks and four books later Jack was discharged.  For the first time ever, without a picc line.  The picc line is a way to provide food to Jack.  Jack's pancreatitis is unforgiving and in the past simply resting it a couple days without food or water would not work.  He required a picc line.  And would be sent home with it.  Most countries will not discharge a patient with a picc line.  They are highly suseptible to infection.  The infection can be deadly.  And in the past, Jack has had a picc line infection.  Which I can not talk about.  The memory is too painful.

Emotionally, Jack had a harder time coming back from this hospitalization.  He did not snowboard for the rest of that season.  The year after, he did not get on his snowboard.  Jack loves snowboarding, this was heartbreaking.  In the past, Jack really managed his emotional state well.  As soon as he left the hospital, he was on a board, a skateboard or snowboard, any board.  This time he struggled and for the first time, I was at a complete loss.  I thought we had learned to handle this shitty disease.  He better than the rest of us.  The shitty disease that would without warning cause horrific pain. take him away from his friends, school and family, leave him without food and water for long periods of time.  This time was just one time too many for Jack.  I wondered if he would ever get back on that board.  Head off to the terrain park and do all the things I would tell him not too, get way to much air, go over all the rails travel at breakneck speeds.  I was banned from the terrain park for many reasons which I will not get into here.  Except to say that apparently screaming, slow down or go on the smaller jump as he headed for the huge jump is frowned up in the snowboarding community.  I am his mother.  My job is to protect him.   Even I could not protect him this time.  I wondered if my fearless son would ever get on that board and head for the terrain park.

This morning, two years to the day of that epic snowfall and the last great day Jack spent on his board, Jack got out of bed, loaded up his gear.  His dad got him a great helmet and jacket and goggles for Christmas.  He got in his car and headed to Mountain Creek with his crew.  Tears tumbled down my cheeks as I watched him leave.  I never thought I would be so happy to see him leave.

#Cysticfibrosis #cf #cfforg #live #breathe #love #mybeautifulboy #strattonmountain #snowbard

Hello Old Friend.

Well, it's been a while.  While I would love to tell you, that I have not written because all is well and there nothing to tell, sadly, nothing could be further from the truth.  There are some things I just can not write about.

So rather than write about our life, I will share my impression of the new show on TV.  The Red Band Society.  I hoped when I first read about this show, it would honestly highlight the truth behind life in a babies hospital.  Not so.  I have been watching now for almost an hour and nothing looks slightly familiar to life in a Children's Hospital.  I would recognize it if it did.  I have spent months in Children's Hospitals.

Rather than tell the truth, they sugar coat the lives of children with fatal and potentially fatal diseases. Why?  It is okay for us to watch shows depicting life on the singles scene, as a housewife, as a sex addict.  When comes to depicting life with a terminal or life threatening children's disease we need to make it look like time a frat party.  This is an opportunity lost.

I think a show like this hurts more than it helps.  Life in a children's hospital is hard.  It is depressing.  It is painful.  You are a long way from home. You are not feeling good (if you were you would be home) It is not one big party as this show portrays it.  I am only sad because a show like this could bring awareness and compassion to the fight that faces so many children.

When I started this blog I thought I could easily share everything facing our family.  Some things are better left unsaid.  Jack's fight has been so difficult from the start.  But I have watched him fight, I have watched his sisters stand by his side and fight with him.  And sometimes it makes cry that I have not given them the perfect life they deserve, I know in my heart they are going to be fine.  They are going to win this fight.  Jack will be fine.

My Easter Miracle

Over the past fifteen years, I have found myself asking "Where is God?".  This Easter, I got my answer. He is here and is listening.

Raised in a pretty traditional Catholic household, we rarely missed church, always visited the Rectory, carefully chose what to give up for lent and never ate meat on Fridays during Lent.  My faith, some would say, has wavered, okay gone completely off the rails.  Since Jack and Kate were diagnosed with Cystic Fibrosis, after spending months at a Baby's hospitals, I found myself asking "Where is God?"  

This Easter weekend I was flipping channels and found myself stuck on the History Channel watching the Bible mini-series.  I could not stop watching.  Easter Sunday came, I went to church.  

I rarely go to church anymore, but there I was on Easter Sunday, in church.  No I was not wearing a pretty new dress or lovely hat, I was not with my family.  I sat surrounded by families, in their Easter best.  I felt at home, I always do in Church.

I ended up in the middle of the pew and thought to myself, if I were on the end I would feel the holy water when the Priest walked down the middle spreading it.  Literally one second later I felt a huge splash of holy water, right on my forehead.  It was as if someone was listening to me.

Finally, it was time for me to pray.  This past year for Jack has been terrible.  It started with being hospitalized for his pancreas, but soon it was his lungs.  Everyone with someone with CF in their family will tell you, it's all about your lung function.  For no reason, this past year Jack's lung function has been on downward spiral.  To add insult to injury he started to culture for an infection that he would never get rid of.  The last time Jack went to his pulmonary doctor, his numbers started with a 6, they were in the 60s!  Ninety- eight is normal.  I am not going to lie, this terrified me.

So there I sat in church, praying for Jack.  Believing in God, believing in the resurrection and what Easter celebrates and praying for my son.

Today Jack had an appointment with his Lung Doctor.  I had forgotten all about this appointment.  His Dad took him, and when he walked back in, I braced myself for more bad news.  After all, what had changed?

I asked how his appointment went, Jack smiled and his Dad smiled.  His Dad looked at me and said, ask Jack what his numbers are.   I did .. 95%!  The doctor was shocked, Jack was shocked, they were high fiving.. this was unheard of.  This was a miracle.  My Easter miracle.  Maybe God has been here all along but I just have not been paying attention.

I am so thankful for my Easter miracle.  I am so thankful for my three beautiful children and I am thankful for those numbers because that is a miracle.

PAY IT FORWARD

It is hard to believe I have a house filled with teenagers now.  It seems like yesterday I had a house full of babies.  Our house was a happy house, filled with laughter.  Jack's diagnosis came early on, seven months and with his diagnosis came fear.  Pretty early on, I learned I was not alone on this journey.  This train, my train, was filled with generous people. They were neighbors, mothers, athletes, businessmen and strangers.   Their giving arms where much longer than their taking arms.  What they have accomplished is nothing short of a miracle.

Before Jack's diagnosis,  I was blissfully unaware that disease in our country was a multi million dollar business.  I just assumed, if your child was sick,  there were doctors and scientists working to cure it.  I could not have been more wrong.   If they have a way of getting rich, they would work to cure your child's disease.  I suppose I feel fortunate that my child has a disease that there has been a lot of money raised and as such a great deal of progress is being made.  Will that progress be in time for Jack, that I do not know.

So along with keeping Jack healthy until there was a cure was the added responsibility of raising money and awareness.  This journey I started fifteen years ago, continues today.  Cystic Fibrosis, as is the case with most children's diseases, gets very little corporate funding.  Why?  Our children do not grow up, they do not become the CEO of Pepsi where they can command millions of dollars in corporate funding to their favorite charity.  Most donations to the Cystic Fibrosis Foundation are personal.  My fundraising career  started out with a cocktail party.  I divided my friends into three teams and challenged them to raise money for the Great Strides Walk.  The winning team received a case of wine.  I hoped for $5,000 we raised close to $100,000.  The checks rolled in from all over, some of the most unexpected came from families with no connection to mine.  One check for $25 came from a an electrician and his family in the next town over. Someone with a giving arm longer then his taking arm.  

Along this journey, I have met so many people who have donated money, time and anything else they could to make a difference in the life of a child with Cystic Fibrosis.  And for that I am truly grateful.  While a diagnosis like Cystic Fibrosis leaves you wondering why my child or any child for that matter. The journey you set off on will change you for ever.

Two men have changed this direction of Cystic Fibrosis, Frank DeFord and Boomer Esiason.  Each has gone so much further with their commitment to this disease than one could ever expect.   Frank DeFord lost his fight 30 years ago when his seven year old daughter died from Cystic Fibrosis after an exhausting fight.  He not only continues to make appearances, he gives speeches from the heart.  He shares his daughter Alex with everyone in that room.  After Mr. DeFord speaks, there is never a dry eye.    To relive his fight which ended tragically must be so difficult.

When Boomer son was diagnosed with Cystic Fibrosis he shared his second call was to his friend Frank DeFord.  Mr. DeFord replied that there is a reason for this.  Knowing that someone with Boomer's fame, kind heartedness and dedication would change the face and direction of Cystic Fibrosis.  It has.  For that I am grateful.  But I wish medicine in America did not require someone famous to have a child with a disease to cure it.  Not to take away what both Frank DeFord and Boomer Esiason have done for every child with Cystic Fibrosis.  They have given them a fighting chance.  They have given every mother of a child with Cystic Fibrosis hope.

While these gentleman have raised hundreds of millions, I would like to thank the electrician for his $25 check and his blessings.  You have taught me that every little bit makes a difference, it makes in impact, it gives a mother faith and hope.  Your generosity touched my heart.  I am not in this fight alone, I have the love support, prayers and blessing of so many.  I only hope that I can pay it forward in some small way to another family that is struggling with a child with a disease.

There is little hope for changing how disease are funded in America.  But now I have hope in the human spirit.  I think most, when called upon, will step up and do what they can.   I always say that I wish Jack did not have Cystic Fibrosis, after this year, I wish this more than ever.  It has been a horrible year.  But I am grateful for the journey,  along the way have met so many whose kindness, generosity, dedication and spirit have given me faith, faith in my son, faith in my community, faith in Jack's future and every other child with CF.  Thank you for that. #cysticfibrosis #rockCF #children #love #Faith #Boomeresiason