Nicole Marie Chicarello

Memorial Page

Nicole Marie Chicarello

"Coley"

12/15/85 - 5/12/01

On May 12, 2001 at midnight, God decided to call our angel back to heaven.   She was in my arms, at home in bed , where she wanted to be.  She was tired of hospitals, tired of not being able to breathe, tired of having to struggle to walk from her room, to the living room.  I believe that she was ready to go.   Nicole had Cystic Fibrosis.  CF is a genetically inherited disease that affects the lungs and digestive system of approximately 30,000 children and young adults in the United States.  CF has no cure!   Here are some facts:

• CF causes the body to produce an abnormally thick, sticky mucus, due to the faulty transport of sodium and chloride (salt) within cells lining organs such as the lungs and pancreas, to their outer surfaces.  The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to help break down and digest food.

• CF has a variety of symptoms.  The most common are: very salty-tasting skin; persistent coughing, wheezing or pneumonia; excessive appetite but poor weight gain and bulky stools.  The sweat test is the standard diagnostic test for CF.   The simple and painless test measures the amount of salt in the sweat.  A high salt level indicates that a person has CF.

• The treatment of CF depends upon the stage of the disease and which organs are involved.  One means of treatment, chest physical therapy, requires vigorous percussion (by using cupped hands) on the back and chest to dislodge the thick mucus from the lungs.  Antibiotics are also used to treat lung infections and are administered intravenously, via pills, and/or medicated vapors which are inhaled to open up clogged airways.  When CF affects the digestive system, the body does not absorb enough nutrients.  Therefore, people with CF may need to eat an enriched diet and take both replacement vitamins and enzymes.

• One in 31 Americans (one in 28 Caucasians) - more than 10 million people - is an unknowing, symptom less carrier of the defective gene.

• An individual must inherit a defective copy of the CF gene — one from each parent — to have cystic fibrosis. Each time two carriers conceive a child, there is a 25 percent chance that the child will have CF; a 50 percent chance that the child will be a carrier; and a 25 percent chance that the child will be a non-carrier.

Through better treatments and medications, the average life-span of a person with CF has climbed to the early 30's.  But an average is just that...some live longer (there is even a gentlemen named Hal who is in his 60's!) and some, like Nicole live less.

Getting the word that your child has a fatal disease hits you like a brick.  In our case, we knew the night that she was born.  She was born with meconium ileus, a blockage of the bowels that is a possible indicator of CF.  The birth of children is traumatic enough without having to be told that your child now needs surgery!  In our case, Nicole was rushed to Massachusetts General Hospital that night and first thing the next morning, while my wife, Susan was still in the hospital recovering from the delivery, Nicole had bowel surgery to remove the blockage.  We then had a sweat test performed to confirm the diagnosis, of CF.   Susan had a brother, John, who died of CF in 1979, so we were not totally surprised with the outcome.

Nicole's first Christmas was spent in the Pediatric Intensive Care Unit.  She was so small and so sick that it killed me to see her in the incubator.    She spent about 6 weeks in the PICU, but was finally well enough to come home.   I can not say enough about the nursing staff that took care of her during this lengthy hospitalization.   They were phenomenal!

I spent that first night as well as many, many others, over the next 15 1/2 years sleeping on a chair or a small cot, usually next to her on Ellison 15 and 16 at MGH.  Although not afraid of anything, Cole was more comfortable with having someone stay with her during her hospital stays.  I would occasionally grumble that I spent the day working in one hospital and then would go to another hospital and spend the night there and repeat this process for the length of her stay.    However, seeing what Cole was going through, without complaint, how could I complain?  It was the least that I could do.  After the birth of our second daughter, Heather (who is not a CF carrier), my wife Susan decided to stay home to take care of her.  The job of staying with Cole fell to me.   After her death, while cleaning up her room, I came across a school project that she never shared with us.   The project was a series of letters written to different people.  One was written to me (click to read) and thanked me for being there for her during all her hospitalizations.   Needless to say, that letter will never leave me.

Nicole had a second surgery approximately 3 months later for bowel adhesions.  Fortunately, the same surgeon, Robert Foglia was able to treat her successfully.  One day as my wife and I were visiting, she stopped breathing and began to turn blue.  Luckily Dr. Foglia was there and ushered us out of the room.   A short time later, a Code Blue was called as Nicole went into cardiac arrest.   They were able to resuscitate her and she suffered no long term damage.  It appears that she had a reaction to Morphine that she had received for pain.  Nicole handled all of this without complaint with a smile on her face. 

Life progressed for the next few years through many hospitalizations, IV antibiotics, oxygen, chest physical therapy and many, many pills.   However, when she was feeling well, you could not even tell she was sick.  She played soccer for 3 years and her team won the division championship two of the three years.  Unfortunately, she began to worsen.  She needed another surgery to insert a central IV port for her many antibiotic treatments and a feeding tube to help her gain weight.  She once again, bounced back from this and the devices were very helpful to her condition.

Nicole led a pretty normal life, outside of her medication and treatment regiment.   For years, she and I helped to support the CF Foundation by raising money, first through the Prudential Stairclimb (fifty flights of stairs) and later through "Great Strides".  Up until the 9th grade, she attended school regularly and got good grades.  She was even the crocodile in the 6th grade production of Peter Pan.  Nicole was a wonderful child, always laughing, always happy.  She had a wicked sense of humor and loved to tease.  She loved rollercoasters, drawing, going to the mall and hanging with her friends.  She adored her grandparents (Nanny and Papa), her aunts and uncles, her cousins and her pet ferret, Emmett.

When it became obvious that she was not going to survive to adulthood, we made the decision to list her for a double lung transplant.  Lung transplantation is still the least successful of all the transplant surgeries, but it is the only option for those with end-stage CF.  Once again, she went through the extensive battery of tests without complaint.  Unfortunately, she did not live long enough to reach the top of the list.   I'm sure that she would have handled it just fine.

Nicole loved everything Disney.  We went to Disney World six times during her life.  They were very happy trips.  Her room was full of Disney "stuff" including, I think, a dozen Eeyore stuffed animals of all shapes and sizes.  Needless to say Eeyore was her favorite Disney character.  In December of 2000, we applied for and received a great Disney Cruise from the wonderful folks at the New Hampshire Make-a-Wish Foundation.  The entire family had a great time on what was to be Cole's last trip.  The Make-a-Wish Foundation provides "wishes" to children with life-threatening illnesses.  They have granted wishes to over 80,000 children over the past 20 years.  The New Hampshire chapter has granted over 300 wishes in its 14 years of operation.

Nicole became sicker after we returned from the trip and was on oxygen constantly.   At this time, we were hit with another surprise.  She developed Diabetes, another symptom of this wonderful disease.  Now it was time to learn how to test and regulate her blood sugar and to administer her three times daily injections of insulin.   As always, she picked this up quickly and in no time was giving herself the injections.  The teaching nurses were amazed.

Nicole was being hospitalized more and more frequently and although the staff at the Mass General Hospital for Children was fantastic to her (I must single out Kathy Pazola, RN for her years of care and compassion) she was tired and wanted to go home.  We discussed her options and she made the decision to go home.  Her CF doctor, Allan Lapey, was at first hesitant to have end stage care at home, as it had not worked out for him in the past.  We decided that it was what Nicole wanted and that we would do whatever was necessary to make it happen.  We introduced Dr. Lapey to Jennifer Lavery, RN.  Jennifer is a home health nurse who took care of Cole during her many home IV treatments.  Jennifer was more than just a home health nurse, she became a friend (thanks for everything, Jen!).  We discussed the situation with her and she agreed with our decision and volunteered to provide whatever assistance was required.  This was enough to convince Dr. Lapey that we could handle the end at home. 

Approximately a month before this our beloved dog of 13 years, "Hawkeye", had to be put to sleep.  It was very tough on the family.   Nicole then decided that we needed a new dog.  I was at first against it, but Cole did a lot of research and decided that she wanted a Beagle.  I relented (yes, we did spoil her a bit) and we began a search for the dog.   My brother-in-law, Tom McElligott, came through and found one for us.  I'll never forget the night he brought "Freckles" home.  The look on Cole's face is etched on my mind forever!   Freckles definitely made Cole's last week more pleasurable.

The end came more quickly than we expected.  On Friday, 5/11/01 Cole was feeling much better than she had in a few days.  She asked me to play cards with her.  We sat in her room and played Rummy for about three hours.   By the way... she beat me (385 to 175)!  For those that know me, I am very competitive and would never just let her win.  I keep the scoresheet (click here), that she wrote, with me at all times.   While playing, we listened to her CD's (Green Day, Bare Naked Ladies and Smashmouth), laughed and had a great time.  As I stated during the eulogy at her funeral, I truly believe that she was saying goodbye to me by giving me this time with her.   In retrospect, it was the best three hours of my life!  She got tired and decided to take a nap.  Later that night after a small supper, she wanted to sleep in our bed with my wife.  I went downstairs and watched TV.  A short time later, Susan called me upstairs.  It was apparent that the end was very near.  I climbed into bed and held my baby in my arms, while Susan called Jennifer.  At midnight, Cole took one deep breath and then stopped breathing.  It was a very peaceful end.   Jennifer arrived shortly thereafter and pronounced her dead.

The wake and funeral were beyond belief.  It seemed like all her classmates and teachers came.  I met kids that I did not know who had the most wonderful stories about Nicole.  They all mentioned her contagious giggle and her infectious smile.  My favorite story was from Nicole's counselor.  She told me about one of the star football players, Tony DiPietro, who became Cole's "bodyguard".  She was always a small girl and tired easily, especially in Jr. High, having to go from class to class.  Well, Tony used to carry her from class to class, when she got too tired to walk.  Needless to say Tony is a very special kid!  The outpouring of support really helped us get through those tough days.   We received more cards than I could count, several personalized poems from classmates and enough flowers to fill a room.  I must also thank, once again, my long-time friends Bill Newman, Rick Avery and Mike Montuori for all they did during those days.  I probably could not have come through this without them.

Well, here we are several months later.  Nicole's 16th birthday would have been on Saturday, Christmas is next week and life is very, very different without Cole.  I miss her every day!

Thank you for visiting this site.  If I have educated or inspired you please consider supporting the Cystic Fibrosis Foundation (lets end this horrible disease in our lifetime) and the Make-a-Wish Foundation.  They are both wonderful organizations staffed by great people.

The song you hear playing in the background is Fly by Celine Dion.  Celine is a big supporter of CF as she had a niece who had the disease.  The first time that Nicole heard the song she loved it.  She specifically asked Susan to play this song at her funeral.

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