This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
My son was very sick, on and off for the past 3 years. Nolan had 2 sinus surgeries (2008, 2009). He would get better and then within a couple of months he’d get sick again. He would get sick so quickly, and lose weight really fast when he was sick. At birth he was 9lbs, 10oz and very healthy. He had lots of ear infections, and many cases of pneumonia (but not any different than any of my friends’ kids.) He never had digestive problems as an infant or child, but did experience asthma as a baby. Eventually he out grew it, at about age 10.
When he was 15 or 16 years old, the asthma came back, and he started getting what we thought were really bad allergies/sinus trouble. And, to make matters worse in middle school he started having digestive problems.
We took dairy out of his diet and it helped some, but I spent years taking different foods out of his diet trying to figure out the problem. After the 8th grade, he didn’t get any taller and had lots of trouble keeping weight on.
The spring of his sophomore year he got a bad cold and couldn’t shake it. He also had a cough and missed about a week of school. We finally took him to the doctor where he started antibiotics. They didn’t help much, and before we knew it, he had lost 30 pounds. He ached all over his body, had a horrible taste in his mouth and his temp was 104. In addition he was sweating profusely. At night I was getting up 2 and 3 times to change all of his bedding because of night sweats.
At this point the doctors really thought he had lymphoma. They ran every test you can imagine and finally because of the bad taste in his mouth they decided he must have a really bad sinus infection. They did surgery and he slowly improved. He missed that entire
tri-mester of school. He seemed to improve, but still had digestive problems and sinus issues. Then last year (2010), his junior year the same thing happened again. Bad taste, fever, night sweats…so the doctors did another sinus surgery and once again he got better (each time with steroids, antibiotics, etc.) His senior year he did pretty well. He lifted weights all summer and ate 6 meals a day trying to gain muscle. He succeeded in gaining muscle but could never keep up with his peers. My husband is very muscular, along with his family and it just didn’t make sense that Nolan had such a hard time gaining and keeping weight on.
During football season he lost all the weight had had gained over the summer. He got sick a couple of times but nothing serious. In November as basketball season started, he just wasn’t feeling right and I could sense that he was feeling depressed. My husband and I tried so hard to get him to eat and he never had an appetite because he would just feel bloated during and after eating and suffered with diarrhea. Around the end of November, beginning of December I picked up my Costco Connection magazine and I’m sure you know what I am about to say.
I saw the article about the Portraits of CF calendars and The Bonnell Foundation. I read the article about your girls. I physically got the chills up and down my entire body. I had spent hours researching and trying to figure out what was wrong with my son and even though I have known several people in my lifetime with CF, I didn’t know CF affected the sinuses. As soon as I read it, I just knew. I immediately went to the computer and started reading articles on the symptoms of CF. I learned about the digestion, sinus, asthma, poor growth, trouble gaining weight. I just couldn’t believe it. I told my husband about it and a few nights later we mentioned cystic fibrosis to our son. Nolan was 18 then, and I just felt like I shouldn’t push anything. I decided to leave it alone until he mentioned it. I really wanted to get him tested, but I knew that it needed to be ok with him.
In the middle of January, he got sick again, same thing: night sweats, fever, bad taste, sinus pressure, we went to the doctor and they hooked him up to an IV in the office because he had lost 8 pounds in just 2 days. We sat there for 4 hours and I slipped out of the room and found the doctor and asked him if it would be crazy to test Nolan for CF. He just looked at me and said, “no it wouldn’t be crazy…it does kind of fit.”
So long story short, on February 9th, 2011 we found out that Nolan has Cystic Fibrosis. I don’t know if you believe in God or not…but we are Christians and I truly believe that God used your family to help us find an answer for our son. I have wanted to contact you and let you know how thankful we are for the article and finding an answer!
– Shelley, Nolan’s Mom
When I was working on my second CF calendar, I met Josh Sheldon. The last time I saw Josh was two weeks before he died. I would have never guessed he was so close to losing his battle with CF. He was always trying to make others feel better, and not worry about himself. When he came to the photo shoot he was on oxygen, but in my naïveté I didn’t think it was a big deal because he told me it wasn’t. He set it aside, and was not wearing the tubing.
When Josh was born, his parents Lynne and Len were told he might make it to his 15th birthday. Lynne says that is what sticks in your brain, “So once he passed 15 years old I thought, ok, we’re beyond that. And when he got to 21 I thought that was good, but we could see his decline so each year I thought we were lucky we had this year, but I don’t know how many we have left. “
The Sheldons adjusted to live with CF. In school Len says his son tried out for every sport, swimming, football, wrestling, and track. “He never made the team because he couldn’t keep up with the physical end of it. But he did find his niche in golf. Golf is a competitive sport with yourself. He did very well. He actually ended up becoming the Captain of his High School team. And he played Varsity all through. Josh was also good at skiing, snow boarding, water skiing, and rollerblading. The hardest thing for me was to watch how his health affected how he wanted to do things. He couldn’t do them anymore. So that was hard for us.”
Josh went to college at Central Michigan University. It was a tough year for him because he got very sick and eventually had to come home. Josh decided to attend Macomb Community College. He got his associates degree in Architecture. But Josh was a fighter and didn’t complain. He hung out with his friends when he could, and faced the reality of needing a double lung transplant. Lynne says they continued to adjust each time the situation got worse, “Once he was in the hospital we adjusted. The last few years of his life, we were always in the hospital. And he was always in at Christmas. We always tried to bring him home on Christmas Eve, and we did accomplish that. One year he came home but he got really sick, and he had to go right back in after Christmas, and the same for New Years. I made big trays up of goodies and took one to the nurse’s station, so they would be busy and wouldn’t bother us, and took the other tray to his room. The three of his friends came to the hospital. I had party hats and champagne in the room. Jennifer (Josh’s sister) and her fiancé came. Everyone stayed until after midnight and then his friends took off. Josh was exhausted. He thanked us. I said you know, this is one of the best new years I’ve ever had, it really was. I didn’t resent not being at a party, or out to dinner, I was just happy that we had it there. I thought it was really nice his friends came too. They gave up part of their new years.” Josh had a major bleed in his lungs. Lynne and Len brought Josh home from the hospital after six weeks. Josh wasn’t going to get his transplant, Josh was dying.” The doctor told Lynne that Josh was only hanging on for her. Lynne didn’t think her son would make it through the night so she called her daughter, and some close friends who also picked up her Mother. There is some humor in everything Lynne says. “Josh was supposedly dying and when everyone came in the room Josh asked our friend Tom how he was doing? We all laughed. Then Josh said he was sorry, and I said for what? He said, I don’t think I’m going to die tonight.” The next morning Josh, with his voice trembling, told his mother he couldn’t do it anymore. Lynne said it was ok. The two said the Lord’s Prayer together. Lynne told her husband. Family friends were in the room too. They sat by Josh, on his bed and he passed away.
I (Laura Bonnell) went to Josh’s funeral. It was a wonderful tribute to Josh’s life. Lynne got up and spoke about her son. In my mind I was screaming for her to sit down. I knew I was going to burst uncontrollably in to tears. I did. I was crying over the death of Josh, for a mother’s pain and because of the reality of the disease. Lynne spoke beautifully about her son, the entire room was crying, but Lynne bravely reminded all of us about the amazing young man Josh had grown to be, and how he will never be forgotten because he touched so many lives.
When you meet Kathleen and Tom Armstrong, you want to get to know them better. They’re both full of energy and doing whatever it takes to keep their 11-year-old son Michael healthy and strong.
When Kathleen was pregnant with her youngest son, Michael, she saw problems in his intestines, and she knew he had CF. Armstrong had three siblings with CF. Kathleen was the only child born without CF. Having lived her entire life with siblings who had CF, and losing all of them to the disease, Armstrong is still optimistic about Michael’s future. “I have no doubt in my mind that my little ray of sunshine is going to give me grandkids, if I live long enough to see it. He is just full of energy, and he’s healthy. He has had a nagging cough before, when it’s winter, I mean what are you going to do? We put him on a strong drug. He has been on the Tobi (inhaled medication). Twenty-eight days on and twenty-eight days off. Michael is in fact doing very well. There have been little landmarks. He just broke the sixty-pound mark and I think he’s 59 inches; he’s tall enough now to go on all the rides at Michigan Adventure theme park. Every year we go and every year –nope can’t go buddy – he’s not tall enough. This year Michael finally passed the fifty-two inch mark, it was terrific. He had a blast, he fears nothing.”
Armstrong says that every once in a while Michael does get on the “poor me” train. “I kick him right off of it,” says Armstrong, “I have never allowed Michael to wallow in it because it serves no purpose.” There are times when Michael is tired or cranky and would just rather not face the realities of CF. “I will tell him, I know baby, but we have to do your treatments. I’m not Attila the Hun, but on just average days when he’s playing with this legos or whatever, I’ll ask him where he wants to do his treatment. On those days he may say he doesn’t want to do it at all. I am just insistent. I tell him to pick a place to do his treatment and he’ll finally choose somewhere like his bedroom. That’s his only bone of contention is those breathing treatments. It restricts what you can do at that time. or may disrupt playing with friends. Its just part of the plan. If his friends are over, and if he’s having his breathing treatment…paws for the cause…and the friends don’t give it a second look, the first time they asked what the treatments were all about. Michael explained it and they were ok with it. Then they go on with whatever they’re doing. That’s really cool. So his friends don’t see it, they don’t see the CF. He’s just a normal kid that has this routine.”
Armstrong says Michael has been through so much. “It makes me intolerant of people who complain about petty stuff. Get a life; do you know how good you have it? Every once and a while I just don’t want to hear it. I don’t have time for people who complain about the petty stuff.”
Michael’s Dad Tom says the hardest part for him is watching his son suffer. “I have learned from all that we have been through. It has taught me that happiness is a choice.”
Armstrong says don’t take anything for granted. “I stay home and take care of Michael, Tom Is involved in fund raising. We all do the Great Strides walk. That’s my little shield; this is what I have to do to deal with it all. I don’t like to think too far into the future. That reminds me of the siblings I lost to CF, and I don’t want to go there.
Advice Tom would give to newly diagnosed parents. “There are treatments, it will be ok. There are good things coming down the pike, don’t give up hope, do research, get information. There are a so many CF people living long productive lives. Don’t be negative, I believe in positive thinking and the power of prayer. Prayer is very helpful. And when it’s his time to go, it’s His decision, and we’ll scratch and fight and kick until then, and we’ll deal with that if it comes. He’s happy, healthy and thriving, a few hiccups here and there but I’m very optimistic. I think he has a long life ahead of him.”
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