Living Life to the Fullest

This is Jack, and this is our story.  This year has been awful.  It started in Vermont, our family trip cut short after the first day.  Jack's pancreas in full distress.  With Jack's Cystic Fibrosis we can be caught so off guard.  There is warning, no signs, no symptoms.  I kiss him goodnight, and in the middle of the night, he is in agony and we are headed to the ER.  In the case, I had a four hour trip.  Without my oldest daughter Sam, I am not sure I would have made it.  She packed the car, refused to stay with friends insisting on coming home with me and Jack.  And when I started crying at the gas station talking to the attendant, Sam told me "Get yourself together".  I am so blessed to have three beautiful, strong and spirited children.

I always know when Jack has pancreatitis.  The nurses in the ER always question me, they think I am wrong.  They always ask "how do you know".  He gets a look.  I know that look so well.  He tries to hide it because he knows it means he is headed to the hospital for anywhere from two weeks to two months.  No food or water and excruciating pain until he gets his meds.  They give my son morphine.  He has been given morphine since he was six.  Mothers worry about giving their child asprin.  My son is on morphine.  But I know that look.

This winter, once his pancreas settled down and I though I was in the clear, more bad news.  Jack had a staph infection in his lungs.  One he will never get rid of.  I have feared this since I first read about having a child with Cystic Fibrosis.  This is your battle, keeping his lungs clear.  When he was a baby.  I thought I just will never let him leave the house.  I will keep him safe.  I will protect him.  Of course early on Jack showed me that was not going to be how he lived life.  He took off as soon as he was mobile.  And he has lived life to the fullest since.

He took the car keys when he was four and by the time I made it outside Jack had the motor running his sister, who idolized him,  was riding shotgun and he was playing with the pedals.  When I asked where they were headed.  He said "town".  I said "I do not think this a good idea".  Jack said " I do" and Kate agreed.  I was outnumbered.

There are great drugs now to help clear Jack's lungs and there have been great advances this year.  There is a drug now that stops the disease, Kalydeco.  My hope is it will be available in time to stop Jack's disease.  My prayer is that every child with this disease will be able to get this drug.

Twitter this weekend was a buzz with all kinds of news, it is my way to stay connected to the world.  Along with all the news from Hollywood and Washington, I read about a movie, a short film that Matthew Modine's son Boman is trying to get funded.  It is about a girl about Cystic Fibrosis trying to live life to the fullest.

Not much has been written about Cystic Fibrosis.  A film that will highlight the fight and the will and the strength of a child with the disease was great news to me.   The film is based on the youtube diary of girl named Eva.  Eva documented her fight with Cystic Fibrosis.

The film is important, because yes there have been great advances but children lose their fight everyday.  I think that most young adults and children I have met with Cystic Fibrosis do live life to its fullest.

I have always said, I wish with all my heart my children did not have Cystic Fibrosis, but they do.  As a result I am a very different parent.  I live in the moment and try to appreciate what each day brings.  I try to stay positive and not sweat the small stuff.  Years like this are challenging because I am so clearly reminded.  But Jack always seems to have a handle on this.  He says "I am okay mom".  And he is.

Please take a look at the following link.  The movie is titled Hyperion and everyone will benefit from seeing this film.  I hope it gets made.


http://www.kickstarter.com/projects/447490465/hyperion-0



Thank you to the Modine's for making this film...  For showing her fight, her strength, her living life to the fullest.

Our fight just got a little harder in the past five months.  Its hard for me to write about that.  Its hard for me to share that.  I have always been pretty good about living in the moment, not always thinking about Jack's Cystic Fibrosis.  But recently we got news that makes that so much harder.

As I write this, Jack is in bed with his pulmazine flowing out of his neb into his lungs.  We do this twice a day along with his vest.  This is an effort to clear his lungs, they are no longer clear.

My oldest Samantha is graduating in two weeks and off to Bucknell.  When Jack was first diagnosed I was told by my doctor "Liz so many children with Cystic Fibrosis are reaching college age and even going."  Saying good bye to Sam this fall is going to be one of the hardest things I have done.  And she is just going four hours away.  She is just going to College.

Honestly, I have always been able to share our fight.  I just can not do that right now.  Our fight is too hard for me to talk about.

May is Cystic Fibrosis awareness Month.  Below is a youtube from one of the more incredible people I have had the pleasure of meeting along this Journey.  She has Cystic Fibrosis.  So rather than talk about my journey, please follow watch her story.  She will inspire you.  She has inspired me.

https://www.youtube.com/watch?v=v6zfSaG6-9A&feature=youtu.be


This is our story:  https://www.youtube.com/watch?v=xD9Dj4RB1dQ

Thank you for your continued support, love, emails, texts, thoughts, and prayers...

best....

Tonight I signed on to my blog to turn it off.

There was a pending comment.  Thanking me for sharing our story.  Finishing by saying live life like Jack.

We should all live life like Jack.  We should be less concerned with what others think, say, and value.  We should spend our time doing the things we love.  Surround ourselves by those we care about.

I have often feared this day, the day Jack and Kate we come to realize just what it means to have Cystic Fibrosis.  So this is my letter to them.

My darling babies,

From the day I was told you had cystic fibrosis I vowed to fight.  I also made up my mind that you would be Jack and Kate who have Cystic Fibrosis.  Not those kids who have Cystic Fibrosis Jack and Kate.  You were not going to be the Poster Children for this disease and I was not going to let it define you.

I was going to protect you and teach you to handle your CF, but truth be told you have taught me that you are so much stronger than this disease.  You have shown me how to live life and enjoy what we have every day.  You have guided me through this.  Jack, Kate and Sam this was not the life I envisioned, it is so much better.  Your love for one another, your support for one is more than any mother could hope for or dream of.

I want you now to know, you are strong, resilient, and empathetic.  You Jack have spent time in hospital than most do in life time, and you kate have been by his side.  I am the one who is blessed to have you.

Know this my beautiful babies, it is a different world for children with cystic fibrosis.  I will fight for you every day.  Do not worry about your future.  I am not worried.  I am in awe of our strength and courage.

I love you with all of my heart, you have given my live meaning.

Mom mom

Anything Can Happen.  Its better now.  Jack has been home for one month.  The girls have gone on with their lives.  Jack has gone with his life. They are good that, they live life and they live it well.  Finally, I am going on with mine.   I remember when Jack was diagnosed.  When, five months pregnant, I was told Jack had Cystic Fibrosis.  It hurt to breathe.  I used to hold him at night and rock him to sleep and whisper in his ear, "don't leave me Jack, stay with mommy."  

One month later, I found out the baby girl I was carrying had Cystic Fibrosis too.    Not knowing what the future held terrified me.  I wanted to see, I wanted just a snapshot.  I wanted to know.   I read everything I could on the internet, drove our doctor mad with phone calls. Finally, Dr. Quittell told me to stop calling, she would call me.  So I waited, I waited for her call.  I waited for her to tell me everything was going to be ok.   And finally settled into life with three children under three. 

Throughout this journey, I have held it together.  We ski, some years logging 40 days on our skis, travel to warm destinations, California to Atlantis.  Kate and I have seen everything on broadway , all our favorite museums and many exhibits.  She is my city girl.  Sam and I traveled the east coast, Sam is a talented a competitive swimmer.  I have tried to attend Jack's skateboarding competitions.  I am currently banned from the skatepark.  Apparently, it's frowned upon to run into the skate park, yelling honey are you ok? when your son falls off his board.   I have cooked, thrown birthday parties, chased them, bathed them, hugged them and loved them.  I have lived life as if everything was okay.

I do this successfully when Jack is not in the hospital.  When he is, it all comes back.  The fear, the loneliness, desperation, the panic.  The nights where I sleep on the chair next to his bed and whisper into his ear, "do not leave me Jack, stay with mommy, don't go".  When he was little I worried he would be scared and he would need with me.  Now I worry about me, I do not know how to live my life without him.

Sam and Kate are Jack's sisters.  They love their brother, the protect him and look out for him.  Some wonder why I never mention Kate in my blog.  Kate has my heart.  She is sweet and smart and sensitive.  Kate has never been sick.  Not one day.  Never.  She is Jack's foundation.  When he was little she came to the hospital and watched endless movies with Jack.  Mostly Pirates of the Carribbean.  She played video games with him.  She stayed over.  

I am not sure what the future will hold.  I know this past stay was the best yet.  Maybe Jack is handling his pancreatitis better, maybe this is our future.  Maybe everything will be ok.

Sam is leaving for Bucknell in the fall.  Life without her, well I am going to miss her with all my heart.  She is blessing, smart, athletic, beautiful.  I have needed her, I have needed her to help me keep this family together.  I know I have to let her go now.  I am not ready to do that.

While this hospitalization was the shortest, for me emotionally it was the hardest.  I do not know why.  Maybe because my father died a few months earlier.  Maybe because I know Sam is leaving.  Maybe because it was the holidays.  Babies hospitals are notoriously lonely, but they particularly lonely during the holidays.  

With a little help from my friends, I am back. A little slimmer, a little wiser, a little more confident about Jack's future.  Taking a page from Jack, I am living life and living it well.  The past week has been the best I have had in months.  So thank you, for the cards, the dinners, the calls, the posts, the flowers, the book recommendations, the CD (loved that), the hugs, kisses and love.     

I am still waiting for my call from Dr. Quittell.  I know in my heart.  Anything can happen.

I Will Never Get Used to This

I started my blog two years ago when Jack entered Columbia Pres.  with Pancreatitis for the sixth or seventh time.  I've actually lost count. Two years later, this January, Jack was admitted to Westchester Medical with Pancreatitis.  In the beginning, I started the blog to keep a medical record of Jack's hospitalizations.  It has become much more than that. Where do I begin this time?

Following Christmas, we packed the tule and headed to Stratton with a forecast of snow.  The snow fell, by morning there was 8 fresh inches and it continued all day.  Jack and his friend headed to the woods, he was on the chairlift by 8:30.  Sam and I headed to the Sunbowl, I spent the day chasing Sam.  Everything was bumped up, while she effortlessly flew the bumps,  I struggled.  Note to self:  I dropped her off at ski school at four because I wanted her to be able ski with me, I did not want her to be able to smoke me.

We all met up at lunch, Jack could not wait to get back.  Sam and I lasted till two, when I just could not feel my legs. At one point, I considered running into a tree, then they would be forced to bring me down in a basket which seemed easier than skiing down at this point.

In the end 22 inches of snow  had fallen.  We were so excited for the rest of the week.  A vacation that Jack had looked forward to for months.  His favorite of the year. Six am, Jack came into my room with a look.  There was no need for him to say a word.  I knew.  I knew he had pancreatitis and I had to get him home.

Pancreatitis' main characteristic is extreme pain.  I wondered how I was going to get him off this mountain.  Its a four hour drive.  Sam, my beautiful girl jumped up and started packing the car.  I offered to drop her with friends, let her stay.  She said no I am coming with Jack.  I gave Jack a Tylenol PM  It was all I could think of.

We made it home, made it to the hospital and started process of getting him admitted.  The ER doctor asked what was wrong with Jack?  I said he had Pancreatitis.  She doubted me, they always do, asked how I new for sure, was the pain coming from his back?  I said he gets a look in his face.  We need to get a line in him and get medication before his next attack. Thankfully she listened and all of that happened before the lab results came back showing that he had a full blown acute attack of Pancreatitis

Our longest stay in the hospital was 9 weeks and six months with a Picc Line.  Jack was fed through a Line that bypassed his pancreas.  I took care of that line.  His shortest stay before this was three weeks, with Picc Line.  He never left without a Picc Line. I was never afraid of the Picc till two years ago, when his Picc line infection made him sicker than I had ever seen him.  Now I was terrified of this line.

You would think, by now, I would effortlessly get through these hospital stays.  I am often told how strong I am and capable.  Well no, that is not the case and thats not what happened.  I handled the days in the hospital well.  I know exactly what needs to happen to get Jack home and I spend my days there making sure it happens with the least amount of screw ups possible.  I fall apart when I go home.

At the hospital, the nurses are my front line and always excellent.  The doctors I chose ahead of time, so clearly trust them and believe in them.  The residents, are like three years, reckless and a pain in the ass.  I need the nurses and I need the Doctors i do not need the residents.  So when the resident screws up, which they always do, I throw them out.  They always complain which makes me laugh, after all I make it clear, I am not there to make any new friends, I am there to get him home.

My favorite resident story was when jack was a year old and was in the hospital for a two week stay.  Getting a line going in Jack proved very difficult and I quickly learned nurses were far better than residents at getting a vein.  The residents blew away all the good veins making it  harder for the nurses. I became very protective of Jack's veins, so when the resident came saying she needed to draw blood, I told her I need someone more senior to do that.  She said "Mrs. Clark I am the most senior person on the floor so maybe you need to leave the room while I do this."  To which I said "One of us is going to be leaving but its not me.  I have bras older than you, you march out there and get one of those qualified nurses to do this if you want the blood.

Anyone who has spent anytime in a Children's Hospital will tell you its the loneliest place in the world and over the holidays its ten times worse.  I do not think I will get used to it.  I do not think will ever adjust,  I do not think I will be ever  handle it  as well as I would like.  I get lonely.  I get scared.

My girls handle it.  Jack handles it. Before I took Jack to the emergency room, Sam hugged him, and Kate packed his bag.  Kate has spent years by Jacks side in the hospital.  Kate is one year younger than Jack.  They were inseparable when they were younger.  Jack was Kate's world, whatever he wanted to do she was right along side.  Often Jack did not have the best ideas, like the time he took the keys to the minivan, jumped in, started it and was pushing the peddle by the time I realized they were gone.  And there was Kate, sitting shot gun.  I told the two them, I did not think this was a very good idea, Jack did not agree and Kate agreed with Jack.

The hardest part is the beginning, before they get his pain under control.  Seeing him in that much pain breaks my heart.  His father will say "try giving him the least amount of morphine possible".  Fortunately the nurses and I agree, give him what it takes.

This time, Jack did really well, his numbers went down and all the doctors seemed confident he would leave without a Picc Line.  The line he had left with every other stay.  The Picc Line I live in fear of now.  Last time he did really well too, we came to this point and he was being discharged.  But then it was like the movie the perfect storm, when they see the sky clearing and they think they have made it only to have to storm engulf them again. Last time Jack did not go home, he stayed for weeks and got a Picc Line.

I was home the night before the Jack got discharged, sure that the numbers would up in the morning and he would staying.  So convinced that I cried myself to sleep that night.

Thankfully, I was wrong, Jack come home and one week later I am happy to say he is good.  I am not.  It always takes me a little longer.  The first few days, I cried on the phone to who ever would listen, I feared we would end up right back in the emergency room.  I grabbed on, I held a little too tight.  I fell apart.  I lost it.  I was so far from that strong girl who handles this so well.  I am ok now.  I always am.

A footnote:  I am blessed to have wonderful people in my life who shower me with love.  I appreciate every post, tweet, like, book suggestion, phone call, special CD and more ... I am here to say it makes a difference.  I am forever grateful.

Dear John

To: John Byrne,  Jack's nurse, my guardian angel.

Dear John,

I am writing tonight to thank you.  Thank you for helping Jack and saving me. I was watching the ceremony for the children in Connecticut.  Brought me back to when Jack was six,  and it was the holidays and he got sick.  The first time he was really sick.

Do you remember the first time you met me John? I do.  It was December 23.  Jack had finally been released from Columbia Presbyterian Babies Hospital.  On November 2 of that year we brought Jack to the emergency room, he was in so much pain, we had no idea what was wrong with him.  He has Cystic Fibrosis and I guess I always thought it would lung issues that would bring us to the emergency room.  This time it was Jack's pancreas.

If I knew than what I know now,  I  would never have survived those first days.  I was so naive. I thought we will be there for a couple days, they will fix Jack and we will go home.  I was so confident of this,  I told Jack he did not have to wash his hair till we went home.   Jack had dreadlocks by the time we left Columbia Presbyterian Babies Hosptial.

Eight weeks, two surgeries, a thousand blown IVs and one provac port later we were finally going home. It was not that Jack was better. He was not.  I think now I know that insurance companies do not want to pay the hospital bill.  So home we went with the promise that I would have nurses living with us, to care for Jack, around the clock.

They could not find any nurses so they sent you, John Byrne (my guardian angel) to teach me to care for Jack.  Remember coming into our kitchen, John? We had this huge island and you spread out enough medical supplies to keep a third world country going for months.  Than you looked over at me and said "this is what you need to learn how to do."

Tears streaming down my face I turned to you and whispered "I cannot do this, I will hurt him." You smiled, held my hand and said you are gonna be fine.  Everything is going to be okay.

You came everyday, until I got the hang of things.  You gave me your number and said call anytime of the day or night.  And I did.  You always answered.  Remember the time I unhooked the wrong thing, I was sure he was gonna keel over, I called, you answered, I think it was 3 am.  We fixed it and went back to bed.

I want to thank you John. Thank you for being Jack's nurse and for teaching me to care for him.  The last time I saw you, was right before Christmas two years ago. (I have a love hate relationship with the holidays.)  Jack was hospitalized three weeks this time. Seeing you when I answered the door, well I do  not think you will ever know how much you mean to me and Jack.  We have grown to love and rely on your caring and compassionate manor.  I have so enjoyed your Irish sense of humor. My favorite was the time I was going on and on about a mistake a doctor had made and you turned to me and said "Liz why do you think they call it practicing medicine."


I miss you John, you will always have a special place in my heart.  With your help, we are winning our fight with Cystic Fibrosis, me and Jack.

I am sorry for the families in Connecticut who were not even given the chance to fight for their children.   I am thankful my fight is not over, and that I still have my son.  I do not know that I could find a place for me without him.

Thank you John.

With love,

Liz

Members of a Club

Tonight I met Lee Woodward. The evening, in honor of her new book. Evenings like tonight give me hope. It is so inspiring to meet a mother and wife who is a member of the club that no one wants to be member of, yet she prevails and makes sure others benefit. Her husband suffered a dramatic brain injury. With love and support, her family is in tact and she is making sure other families faced with the same injury have the support they need. Once Jack was diagnosed with Cystic Fibrosis, I hit the internet, the same internet his doctor had warned me about. Most of what I found did nothing to help me. I was looking for a cure, a reason, an explanation. I was told "the lord only gives what you can handle". Clearly, that was a huge mistake. As my father, my mother and brother will tell you, I was the week link in our family chain. Then I was told, if the outcome was not in your favor, then they (your baby) was in a better place. What is a better place for a child than with their mother. Finally I read Alex, Life of Child by Frank Deford. His anger resinated with me. And it helped, it helped me to know that like me, he was so mad at this disease. Some think we have great health care in America, and yes if you are healthy we do. Healthcare is business. If someone can make money off of your child's disease, you are in luck, the odds are in your favor, if not, oh well. I had the honor of meeting Frank DeFord. His daughter died from Cystic Fibrosis at the age of seven. He took my hand and tried to put me at ease. He said "Liz your children have a much better chance. " I said "We are all members of a club that no one wants to be a member of." I thank Frank Deford for continuing to do so much for the Cystic Fibrosis Foundation. Long after he lost Alex, he lost his fight, he continued to fight. And because of him my baby has a much better chance. I wish I could say I would do the same, I hope I would. I hope I would continue to fight after I lost everything that was important to me. I admire and I thank him for all he does for Jack and all the other children like him. I also know, every child born deserves a chance. No matter what the cost or how much that drug company is going to make. What is the cost of that one child? My dream is that every member of this club will get their the call. The call to say, your brother, your sister, your husband, your wife, your mother, your father, or in my case, your baby is cured. Your fight is over.