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February 9, 2007


This past October, my 12 year old daughter, Jackie was diagnosed with Cystic Fibrosis. It is now February and I still haven’t completely come to terms with it. I feel like I have been in a dream since August, when we started seeing specialists to find out what was wrong with Jackie.


      For the past two years, Jackie hasn’t been feeling “right”. She had frequent sinus infections with a lingering cough, felt tired, shaky and kept getting stomach aches. At first, most of her symptoms were passed off as allergies. I would get her some allergy medicine and it helped...a little. The doctor would give her an antibiotic and a prescription for the cough and it helped...a little. When her shaky feeling continued, the doctor ordered a glucose tolerance test. We went to the lab and spent 4 hours there. She drank some sugar water and then had her blood tested every four hours. The results of this test suggested that she was hypoglycemic. I was relieved to find a reason for her symptoms and that the problem was controllable. Her stomach aches persisted and were getting gradually worse. The two visits with her pediatrician ended the same way, she had gastritis and was probably going to get her period soon. Jackie started taking Pepto-Bismul and it usually made her feel much better.


      By September of 2005, Jackie was taking Pepto-Bismul after almost every meal. We tried several other medications but none worked as well as the Pepto, so I just kept giving it to her. I decided I was going to take her to a gastrointerologist because she wasn’t getting any better and it almost seemed worse at times. That month, she came down with the Flu, or at least what I thought was the Flu. She could hardly get out of bed, had a fever, cough and her body ached. She was sick for a week. Then, in February, it happened again; Flu like symptoms. At that point, I took her to her Pediatrician who sent her for blood work. “She has Mono”, I was told a few days later. “Expect her to be extremely fatigued for at least a month”.


That month turned into two, then three. I was worried but everyone around me told me I was over reacting and that Mono can really wipe a person out, especially at her age. I asked the doctor to do more blood work because something just didn’t seem right. There were times when I worried for my daughter’s life. She would get so pale and so tired. All I could think of was that dreaded “C” word.


The results were all normal and we all breathed a huge sigh of relief. She did eventually seem to improve somewhat but, never completely. The achy joints continued and she still had the stomach aches. Everyone, including me, assumed that she would have Chronic Epstein-Barre symptoms that would come and go. She just needed to exercise and eat right to get back to normal. I had always suffered from Epstein-Barre and knew that it could come and go at any moment and there wasn’t much you could do about it. We gave her extra vitamins and hoped it would help.


      The summer of 2006 was rough for her. She seemed very depressed and never wanted to go anywhere or do anything. The heat really bothered her and her stomach was still bothering her a lot. She could hardly walk or ride her bike because her legs would hurt and she got so tired. I wasn’t convinced anymore that this was just Epstein-Barre. Something was wrong and I wasn’t giving up until the doctors found out what it was. I told the pediatrician that I wanted more blood work done. Any test that he could think of, I wanted done. Her Liver enzymes were off the charts.


      We were referred to a Pediatric Infectious Disease doctor. I didn’t understand why but, he sent her for a barrage of tests. More blood work and X-rays of her lungs. After looking over her original blood test results, it was his opinion that the Mono should not still be affecting her this way. He was very concerned about her stomach aches, especially with the elevated liver enzymes and with her cough.


      I received a call at 9:00 at night, a few days later from the doctor. He told me that she had Whooping cough and that she, my husband and I should all begin taking an antibiotic. I had no idea that Whooping cough still existed! A few days later, another phone call to say that her x-rays showed that she had a slight case of pneumonia. It was just one small pocket and that the antibiotics for the Whooping cough should be sufficient. So now, I was beginning to understand why this poor child had been so tired. She’s had Mono, Whooping cough and pneumonia over the course of five months.


      The blood tests showed that her liver enzymes had come down a bit but, were still dangerously high and her vitamin levels were dangerously low.  We were sent for an ultrasound of her liver. The next phone call from the doctor was devastating. There appeared to be something showing on her liver. It could be nothing, it could just be some slight scarring from the elevated enzymes but, we needed to come see him the next day and we should pick up the films from the lab where we had the work done. He wanted to see the pictures for himself.


      Unless you have had to face a moment like this, you will not understand what I felt at that moment or what I am about to say. I wanted my husband and my daughter to sit comfortably together on the couch and have a bomb dropped on us. Right then and there, just let us all go together, instantly. I didn’t want to face telling anyone about this phone call. I was dreading the “C” word again and this time, it seemed all too possible. I couldn’t move on to the next moment in time. I was stuck there. I can’t even tell you when or how I told my husband or my parents because I don’t remember.


      The next 24 hours were indescribable. I felt every emotion in existence and just wanted to die. We didn’t tell Jackie too much and tried not to let her know how frightened we were. When we finally went to the doctor’s office, everyone seemed to be overly kind. I hated that. Have you ever witnessed it? When people tilt their head to the side and draw out all of the last vowels of a word while nodding slowly? How are youuuuuu? I'm sure everything will be fiiiiiine...Ugh...it was killing me because it was as if they knew something bad was going on.


     The doctor put the films into a computer and looked at them while we waited in the examining room. The nurse stayed with us, examining Jackie and talking to us in that “overly kind way”. Finally, the doctor came in and asked if we would like to see the films. I wasn’t sure how to feel about this. Do I want to see them? Would it scare me more? Would I have any idea what I was looking at? Was he just separating us from Jackie because it was bad news? So, my husband and I walked down the hall with a death grip on each others hands.


      The doctor was telling us things that we didn’t understand and then finally said that it wasn’t a tumor, it wasn’t Cancer! I thought I would collapse right there. I cried so hard, feeling like a huge weight had been lifted off of me. I now had to explain to Jackie why I was crying and how worried I had been. She was 12. She thought I was stupid. So, the doctor was now trying to explain what he thought the marks were. They could be scarring which I didn't understand. He was describing cirrhosis. How could my 12 year old daughter have Cirrhosis? He wasn’t quite sure what it could be though and now wanted to have an MRI done to get a more detailed picture of what was going on.


      We went for the MRI a few days later but the results weren’t clear enough so the next step was a liver biopsy. This frightened me because it meant putting Jackie under anesthesia and inserting a very long needle into her liver to remove a tiny piece of it for examining. She did quite well though, as always. She seemed to take this all in stride.


      The first phone call was to say that the doctors were still unsure about what was going on with Jackie’s liver. They wanted to send the sample down to a lab in Maryland. So, we waited and we waited. It seemed like forever. I hated not knowing what was going on. Knowing that something was wrong and the longer it took to find out the cause, the longer it would be until they could begin treatment. In the meantime, we couldn’t give Jackie anything for her stomach aches or for any other problems she was having. They didn’t want any more damage done to her Liver.


      When we went back to the doctor for the results, he told us that it was still unclear as to what was causing the damage to her liver. It seemed to be a “fatty Liver” and that she had some cirrhosis. This just confused me even more. What was  a fatty liver? What could possibly cause it? I was tempted to look it up online but knew it would only frighten me. We were being handed over to the Gastrointerologist in the group.


      Of course we were sent for more tests. Bloodwork and another scan of her Liver. The doctor kept asking us questions about family history. Did we know of anyone ever having cystic fibrosis, unexplained Cirrhosis of the liver, etc. We hadn’t. I wondered why she asked about cystic fibrosis. Jackie’s stomach was hurting. She wasn’t having a problem with her lungs. The only time I had ever heard anything about cystic fibrosis was on a tv show where a young man was hooked up to an artificial lung waiting for a transplant and begging to be allowed to die because he felt like he was drowing. I didn't see how she could possible have cystic fibrosis. I honestly never get it a second thought.


Jackie was then admitted to the hospital for a colonoscopy and an endoscopy. Since her vitamin levels were so low, the doctor wanted her in the hospital for these tests. The preparation for the tests could make her potassium and sodium levels drop dangerously low. They wanted to be able to keep a close eye on her. Jackie was NOT happy about this. I stayed overnight with her and we had a private room. The nurses were very nice but it was still a humiliating experience for a 12 year old girl. She was angry and embarrassed and it killed me to see her like this.


The doctor said that she found an ulcer in Jackie's stomach and some blockages. No sign of Chrohns or any of the other digestive diseases that she had been looking for. Before we left, the doctor wanted to do a sweat test. This was to test for Cystic Fibrosis. I still didn’t understand why. The technician came in to run the test. Electrodes were placed on Jackie's arm and a chemical was applied to make her sweat. The electrodes then measured the amount of salt and other chemicals in her sweat. Jackie didn’t sweat enough for the test to be completed. This, I thought was a good sign.


I still didn’t worry at all about CF. It was just a shot in the dark. Nonetheless, the doctor insisted that the test be redone so we went back a few days later. This time, she sweated enough and this time the results were clear.


                                            Jackie had cystic fibrosis.


         I got the phone call on a Wednesday night around 6:30. I had been at my parent’s house for dinner and ran home to get something when the phone rang. I answered it and everything after that was surreal. How could it be? People with CF were very ill their entire lives. Jackie was fine up until a few years ago. People with CF didn’t live past their twenties. That just wasn’t acceptable for me. There was no way I was going to let go of my daughter that young. All of these thoughts were going through my head at once.


      I was angry with the doctor. She announced this diagnosis with pride as if it was a puzzle she had solved; as if this wasn't turning my family's worlds upside-down. If I wasn't in shock at the time, I think I would have screamed at her but, I don't even think it sunk in until I hung up the phone.


      I now had to walk back to my mom’s house and act normal until I could get someone alone to talk about it. My mom was the first one and I took her into another room. I don't even think I looked at at when I said, “Jackie’s sweat test was positive.” All my Mom could say was, “ I didn’t want to hear that" as she was shaking her head and holding back tears.


     I tried to explain to her that the doctor said Jackie must have a very mild case and that there have been a lot of advances in the treatment. I was trying to get her to calm down and make myself feel better at the same time. Trying to convince both of us that everything was going to be ok. How was I going to tell my husband, my father... how in the world was I going to tell Jackie? Please tell me, how do you look your child in the face and tell them that they have a life-threatening disease? That they have an illness that you can't make better. That there is no cure... no medication to make it go away. A parent should never have to do that! A child should never have to hear that! 


I think my Dad took it the hardest. My husband seemed to just be convinced that everything would be alright because it just had to be. I decided to let the doctor explain it all to Jackie. Maybe that was wrong. Maybe that was selfish or immature but there just wasn't any part of me that could bring myself to tell her.


We had another new doctor; a pediatric pulmonologist that specialized in CF. We went to see her the following day. Jackie listened to everything but acted as though nothing was wrong. She just said it wasn’t a big deal. Basically, we were told that


"Cystic fibrosis (CF) is a life-threatening disease that causes mucus to build up and clog some of the organs in the body, particularly in the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that leads to lung damage. Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help us grow and stay healthy. People with cystic fibrosis often need to replace these enzymeswith capsules they take with their meals and snacks to help digest the food and get the proper nutrition."


An awful lot to take in at once.


A week later we were in the hospital because Jackie had a fever. I had called the CF doctor to see what I should do and got a call back moments later from a covering doctor who said that I needed to take her to the ER any time she had a fever. My heart stopped and I felt a pit in my stomach. This was our new life?


She needed to be on intravenous antibiotics for several days. This was very hard for Jackie and she hated me for making her stay there. She would not talk to me at all except to ask, "Why are you doing this to me?"  She blamed me for making her stay. I can remember walking out into the hallway with my mom after one of Jackie's tantrums, trying to remain strong but suddenly could not hold it together anymore. I just broke down crying hysterically telling my mom that I just couldn't do this...I just couldn't be strong any longer. All she could say to me was, "You have to be".


The worst of it was, she was going to be there for Halloween, her favorite holiday. She had a brand new costume that she couldn’t wait to wear. I don’t know if she was really that mad about missing Halloween or if she was just mad that she had CF. She was obviously very angry, period. Who could blame her? She cried, she yelled, she threw things. This wasn’t like her and even though, for the past two years she hadn’t been “like her” this was by far the worst I had ever seen. I thought I would die. There was nothing I could do and for a Mom, that is the worst feeling in the world.


      Luckily, Jackie had made a very good friend while she was in the hospital. One of the nurses had taken care of Jackie both times we were there and took an instant liking to her. She told Jackie that, if she could take it easy on Mom, she would do everything she could to get Jackie home for Halloween, even if it was just for the day. I wanted to kiss this woman! I felt such a bond with her at that moment. To think of her now makes me cry. She came back to the room a few minutes later with the news. Jackie could go to school and trick or treating for a little while, as long as she was back by the time she needed her next dose of medication. This lady was an angel!


      As it turned out, the next day, they let Jackie go home to stay. She just needed to take antibiotics (two different kinds) and a load of other new medications. Luckily, she was not positive for Pseudomonas, the bacteria that most CF patients get. She had a Staph infection which, while still dangerous, was much less dangerous.


      It is now February and we are still trying to make a normal life for Jackie. She takes 15 different medications a day. Creon, an Enzyme, is needed before she eats anything. She also takes Urso, for her Liver, Lactaid to digest dairy, Acidophilus for aiding in digestion, Zantac to keep her from re-developing an ulcer, ADEKs which is a mega dose of vitamins A,D,E & K, additional vitamins A, D & E, a multivitamin, Zithromycin on a regular basis, Singulair for her airways, Pulmozyme which is inhaled through a nebulizer to lessen the thickness of her mucous, Albuterol with an inhaler and Flovent, also with an inhaler. Another treatment is her vest. This device fills up with air and then vibrates to keep the mucous from filling up her lungs. She fights me on this one. It takes 15 minutes and, I guess is embarrassing for her. It will take some time to get used to this new way of life. All in all, she has been very brave.


    Cystic fibrosis has changed us in many ways. Obviously, Jackie's life is completely different. Can you imagine being 12 years old and being told you have a life-threatening disease? Being 12 is hard enough as it is? Your emotions are on a roller coaster! You are just trying to do well in school and be liked by your peers. You are getting ready to start being a teenager, going to parties, dances, falling in love. The emotional impact of a blow like this at this age is devastating.


    For her father and I it meant making sure she took her medications, did her treatments. It meant making doctor appointments, fighting with our medical insurance. I can't speak for her father but for me, it meant building a wall. I didn't do it intentionally or even consciously. It just happened. It had to. I had prevent myself from feeling fear, pain, sorrow... anything at all because I had to be strong for Jackie. If I let myself feel anything, I would break down.


     I have broken down, many times. It hits me like a ton of bricks, out of nowhere when I'm alone in the car or in the shower or walking the dog. It comes like a wave through my body starting in the pit of my stomach and up into my chest until I find myself just sobbing and begging for someone to make her better, to make this all just a nightmare. It lasts for a few moments before I can rebuild the wall and act like everything is ok.



     The latest news from the Cystic Fibrosis Foundation is that they are extremely close to having the cure. A twelve year old girl was on a talk show recently and said that her doctors tell her that the cure will come during her lifetime. Jackie is also twelve so this is the hope I am hanging on to and this is the end of the beginning of our story of life with cystic fibrosis.






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