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.


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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.