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| The Folds Family Heather, Blake, Braden, Bubba, and Bryce |
Heather: "It's lengthy. So, I pulled up the Cystic Fibrosis Foundation website. Tons of information there. About Cystic Fibrosis--a quick run-down…'It's a progressive, genetic disease that causes persistent lung infections, and limits the ability to breathe over time. Symptoms of CF: very salty tasting skin; persistent coughing at times with phlegm; frequent lung infections including pneumonia or bronchitis; wheezing or shortness of breath; poor growth or weight gain in spite of a good appetite; frequent gassy, bulky stools, or difficulty with bowel movements; and male infertility.' And then it goes into all of the diagnostics and genetics and all of that.”
“So, the way I like to tell people is: ‘You don't really know if you're a CF carrier. When I met Bubba, we had no clue. Neither of us had ever really even heard of the disease. Apparently, you're a symptomless carrier. You have no idea that you're carrying it. It's a 1 in 4 chance for us to have a child with CF. Very slim. In order to have a child with CF, that particular sperm, my particular egg, both have to have the copy of CF. So, low and behold, that's how we got Bryce.’ I remember being pregnant with him, and the doctor asking me if I would like to do genetic testing. I was like ‘No…’ We were 21, very young, we were healthy, we didn't have any symptoms in our family….She did the typical rundown of what the test would be. She said ‘Cystic Fibrosis’ and I said ‘What is that?’ She said ‘If you've never heard of it, don't worry about it.’ So, we didn't do the testing. We didn't find out about Bryce until he was three and a half. See, they do newborn screenings now. In the State of Florida, in 2007, it passed where every newborn was screened for Cystic Fibrosis.”
“In 2007, Blake was born. His result came back abnormal for CF. We took him for the sweat test, which is how they also determine for CF. It opens up your pores and makes you sweat. You're shocked for 10 minutes, they do one leg at a time, they take the sweat and they test the salt content. I'll explain that a little further later on. When they did Blake's sweat test, his came back very low. We learned that he's a carrier for CF. So, whoever he will marry, she will need to be tested, given what we know.”
“So, the way I like to tell people is: ‘You don't really know if you're a CF carrier. When I met Bubba, we had no clue. Neither of us had ever really even heard of the disease. Apparently, you're a symptomless carrier. You have no idea that you're carrying it. It's a 1 in 4 chance for us to have a child with CF. Very slim. In order to have a child with CF, that particular sperm, my particular egg, both have to have the copy of CF. So, low and behold, that's how we got Bryce.’ I remember being pregnant with him, and the doctor asking me if I would like to do genetic testing. I was like ‘No…’ We were 21, very young, we were healthy, we didn't have any symptoms in our family….She did the typical rundown of what the test would be. She said ‘Cystic Fibrosis’ and I said ‘What is that?’ She said ‘If you've never heard of it, don't worry about it.’ So, we didn't do the testing. We didn't find out about Bryce until he was three and a half. See, they do newborn screenings now. In the State of Florida, in 2007, it passed where every newborn was screened for Cystic Fibrosis.”
“In 2007, Blake was born. His result came back abnormal for CF. We took him for the sweat test, which is how they also determine for CF. It opens up your pores and makes you sweat. You're shocked for 10 minutes, they do one leg at a time, they take the sweat and they test the salt content. I'll explain that a little further later on. When they did Blake's sweat test, his came back very low. We learned that he's a carrier for CF. So, whoever he will marry, she will need to be tested, given what we know.”
“Number 3, Braden, was a huge surprise. After Blake, my husband went and got a vasectomy. So, God said ‘Eh, not done. You're not done, even if you say you're done.’ Of course, they did the newborn screening on him, because that was 2010. And it came back that he wasn't a carrier.”
“So, we have a child with CF, a child who is a carrier, and a child that is not a carrier. For us to have a child that is not a carrier is also a 1 in 4 chance. To have one that is a carrier is a 50% chance.”
"CF not only affects the lungs and the digestion…but it affects the pancreas, the kidneys…it all wears down because his body is fighting so hard."
"He has to consume like 10,000 calories a day."
Bubba: "See, for him to breathe, it burns 3,000 calories. But then his body doesn't digest the fat, either. That's why he has to take enzymes….for the digestive problems."
"CF not only affects the lungs and the digestion…but it affects the pancreas, the kidneys…it all wears down because his body is fighting so hard."
"He has to consume like 10,000 calories a day."
Bubba: "See, for him to breathe, it burns 3,000 calories. But then his body doesn't digest the fat, either. That's why he has to take enzymes….for the digestive problems."
Heather: "Yeah, it's lengthy. We could take a whole week to tell you about it."
Bubba: "And with the enzymes that he takes, there is really no way to know when they're working or when they're not working. It's all trial and error. He could be growing and getting bigger, but not be taking enough enzymes, so he'll have constant stomach pains. If he's having stomach pains, or digestive issues, we have to up his enzymes. But then, he can only take so many enzymes per day. So, there's that to keep in mind, too."
Bubba: "And with the enzymes that he takes, there is really no way to know when they're working or when they're not working. It's all trial and error. He could be growing and getting bigger, but not be taking enough enzymes, so he'll have constant stomach pains. If he's having stomach pains, or digestive issues, we have to up his enzymes. But then, he can only take so many enzymes per day. So, there's that to keep in mind, too."
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| Bryce, at 3, showing off his muscles |
Bryce's Story
Heather: “When he was a newborn, he had meconium, but it was already passing through. Some CF babies have a blockage, and they will have to have multiple sonograms. Well, because we had no history, and because we didn't have insurance, we only had one sonogram. Everything was going well. I was growing, I was measuring where I needed to be, so there were really no concerns. When he was born, he had the meconium, and they had to beat him a little bit, and everything cleared up. He was good to go.”
The hospital had no air conditioning. The doctor asked if I had a support system. I told him ‘Yeah, my mom lives in Chiefland, and Bubba's mom came down from Jacksonville.’ The doctor said he was going to let us go home. So, we were released 24 hours later.”
The hospital had no air conditioning. The doctor asked if I had a support system. I told him ‘Yeah, my mom lives in Chiefland, and Bubba's mom came down from Jacksonville.’ The doctor said he was going to let us go home. So, we were released 24 hours later.”
“Everything was going good. He was just SO hungry. I thought it was me, because I was trying to nurse him. We finally supplemented formula, he was still hungry. The pediatrician was just like ‘Oh, he's just got failure to thrive. Let's go ahead and give him all formula.’ He seemed to start doing better. But when he was 4 months old, he was drinking 8 ounces every two hours. That's the whole bottle, every two hours! But the pediatrician was like ‘Oh, he's doing good!’ He started plumping up, and gaining weight.”
“Then, he started getting sick. I would have to sit up in bed, pillows up around me, and hold him up. When you would lay him down, and he would cry, he would gurgle and it didn't sound normal. But we were young parents, and we didn't know. We would just pick him up and he would be fine. As long as we were holding him up, or he was up in his car seat, or he was up in his swing, he was fine. The doctor said ‘Oh, he's asthmatic.’ We started doing the asthma treatments, and going through all of that. He started doing good. By the time he was one, the pediatrician said he was asthma-free.”
“He was chubby, he was growing…he was a little on the short side, but the pediatrician said ‘Well, you guys are small, so he'll probably just be tinier.’ That pediatrician was in Gainesville. Then, I started working for Trenton Pediatrics (now Palms Medical), so we started seeing Dr. Cathy Vega.”
“At three and a half, Bryce got an ear infection, and it was just not going away. We were up to the point of doing Rocephin shots. He had a rectal prolapse, which is an immediate sign for CF. My mom said ‘Something is wrong with Bryce.’ By the time that she brought him, he had relaxed enough and it had went back in. Dr. Kathy pulled her book, and found it and said, ‘ask your mom is this what she saw.’ She looked at the pictures and said ‘Yes! Right there, right there!’ Dr. Cathy closed her book and said ‘I want to rule everything out. The first thing we need to do is a Sweat Test for Cystic Fibrosis.’ I said ‘What do you mean?’ She said, ‘I just want to rule things out. Let's not be concerned.’ She pulled up Cystic Fibrosis and said ‘Look at these’ and named off all the symptoms. I said ‘No, no. He doesn't have that.’ I remember talking to Bubba, and he read the symptoms. He said ‘Heather…’ I said ‘No, I'm not going to believe it.’”
“They did an urgent referral, and I think we went within a matter of two days and got the Sweat Test. We came back, and I was working. I picked up the phone, and she said ‘This is Shands, we have a Stat for one of your patients.’ I asked the patient's name. She said ‘Bryce Folds.’ I dropped the phone, and literally fell. Susan Bongiovanni was in the window. She said ‘Heather!’ Everyone knew we'd gone and had the Sweat Test done. I said ‘It's Bryce.’ She ran around the corner, picked up the phone, got the results, hung up. Her, Dr. Cathy, Mrs. Peggy, they all took me into a room, and said ‘Heather, he has Cystic Fibrosis.’ I kept saying ‘No, no he doesn't!’ I was in denial. Bubba, being the dad, he knew that Bryce had it.”
“We had to go back within a week and do a second Sweat Test. The first one was 95% positive. The second one was 99% positive. During a sweat test, they put a medicine that makes you sweat on the thigh, then they put the gauze, then they hook electrodes on there. It shocks them. You know when your hand or foot goes to sleep? We asked the tech, "What is this doing to him?" He said "I'm so glad you asked me. I wanted to know. So, I did it to myself so that I could explain it. It's like the pins and needles when your hand and foot falls asleep." So, Bryce had to do that for 10 minutes on one leg, 10 minutes on the other. Then we had to wait 30 minutes for each leg. Three and a half years old and he's saying, ‘Mommy, please make it stop.’ Screaming the whole time. It was horrible.”
“When Blake had it done, he had no clue. He was only barely 6 weeks old. All I had to do was nurse him and he was okay. So, there was a big difference from having it done with a 6-week-old and a three-and-a-half-year-old.”
“We sat there. I think the first one we were brave for. We were in denial. We kept thinking ‘It's not going to happen. It's not going to happen. There's something else.’ The second one, we just broke down and cried. We didn't want to do it again, but they had to rule out a false positive.”
“Our nurse, Cindy Capian, was the best.--She, unfortunately, retired last year. I think everyone in the CF family/community was like ‘No! You can't go!’—But, that day, Bubba’s parents were there with us. She sat us down and went over every question that we had. She sat there and explained it to us. She said ‘Your life is not going to be the same, but that's okay. You guys CAN do this. I don't want you to think about the negative.’ And the most important thing she told us was: ‘Do not read the internet. You will see so many sad stories.’"
“We think how blessed we are, because we don't understand. He shouldn't look like this. He shouldn't. He has the Double Delta F508. They are almost always sickly, they're in the hospitals, and you look at him and you're like ‘No.’ We talked about this just the other day… ‘Why are we so blessed?’ Being that he's going to be 14, there are battles. He doesn't want to do his treatments the way he's supposed to. We get blown away by how healthy he is. Shands has sent many people into our room and they ask what we're doing. We say ‘We do whatever you tell us to do.’ We have no idea. We've told them, ‘It's prayer.’ We have no other explanation, but that's God's power, right there. I think Bubba was there when the nurses came in and looked at his chart and were like 'He has Cystic Fibrosis?!' So, we don't understand, but we are truly blessed.”
Bubba: "God has a purpose for Bryce. That's the way I really feel. He obviously has a purpose for everyone, but there's some purpose for Bryce. There's a 6-year-old boy right now, that has Double Delta F508, and he's in the ICU right now. He's not improving. He's skinny, his lungs aren't functioning. It's just night and day between him and Bryce. That's what really gives us the reality check and also makes us ask ourselves 'why are we so lucky or blessed.' It's not fair. But it's also not fair for us to have a child with CF, either. But I do believe that God has a purpose for Bryce."
Heather: "He was diagnosed December 19, 2006. That was a very hard year."
Blake: "Ms. Aleta, read that sign over there."
Heather: "That was a gift from Kelly Douglas. She had gotten one for her house, too."
Heather: “This past December marked 10 years since he was first diagnosed. He's only been hospitalized once. April 24th of this year marked 5 years since his hospitalization. I'll never forget it. It was my birthday present that year. That day, the day five years ago when they sent him to the hospital...we were broke. We were like ‘No, this is not happening.’ We went five years without ever having to go to the hospital--without ever having to experience that side of CF. We spent 14 days in the hospital. That is the minimum--14 days. You don't get out sooner than that.”
Blake: "I was there. I was four!"
Bryce: "We got to leave one day early."
Heather: "Yeah, they did end up letting us leave one day early."
“Then, he started getting sick. I would have to sit up in bed, pillows up around me, and hold him up. When you would lay him down, and he would cry, he would gurgle and it didn't sound normal. But we were young parents, and we didn't know. We would just pick him up and he would be fine. As long as we were holding him up, or he was up in his car seat, or he was up in his swing, he was fine. The doctor said ‘Oh, he's asthmatic.’ We started doing the asthma treatments, and going through all of that. He started doing good. By the time he was one, the pediatrician said he was asthma-free.”
“He was chubby, he was growing…he was a little on the short side, but the pediatrician said ‘Well, you guys are small, so he'll probably just be tinier.’ That pediatrician was in Gainesville. Then, I started working for Trenton Pediatrics (now Palms Medical), so we started seeing Dr. Cathy Vega.”
“At three and a half, Bryce got an ear infection, and it was just not going away. We were up to the point of doing Rocephin shots. He had a rectal prolapse, which is an immediate sign for CF. My mom said ‘Something is wrong with Bryce.’ By the time that she brought him, he had relaxed enough and it had went back in. Dr. Kathy pulled her book, and found it and said, ‘ask your mom is this what she saw.’ She looked at the pictures and said ‘Yes! Right there, right there!’ Dr. Cathy closed her book and said ‘I want to rule everything out. The first thing we need to do is a Sweat Test for Cystic Fibrosis.’ I said ‘What do you mean?’ She said, ‘I just want to rule things out. Let's not be concerned.’ She pulled up Cystic Fibrosis and said ‘Look at these’ and named off all the symptoms. I said ‘No, no. He doesn't have that.’ I remember talking to Bubba, and he read the symptoms. He said ‘Heather…’ I said ‘No, I'm not going to believe it.’”
“They did an urgent referral, and I think we went within a matter of two days and got the Sweat Test. We came back, and I was working. I picked up the phone, and she said ‘This is Shands, we have a Stat for one of your patients.’ I asked the patient's name. She said ‘Bryce Folds.’ I dropped the phone, and literally fell. Susan Bongiovanni was in the window. She said ‘Heather!’ Everyone knew we'd gone and had the Sweat Test done. I said ‘It's Bryce.’ She ran around the corner, picked up the phone, got the results, hung up. Her, Dr. Cathy, Mrs. Peggy, they all took me into a room, and said ‘Heather, he has Cystic Fibrosis.’ I kept saying ‘No, no he doesn't!’ I was in denial. Bubba, being the dad, he knew that Bryce had it.”
“We had to go back within a week and do a second Sweat Test. The first one was 95% positive. The second one was 99% positive. During a sweat test, they put a medicine that makes you sweat on the thigh, then they put the gauze, then they hook electrodes on there. It shocks them. You know when your hand or foot goes to sleep? We asked the tech, "What is this doing to him?" He said "I'm so glad you asked me. I wanted to know. So, I did it to myself so that I could explain it. It's like the pins and needles when your hand and foot falls asleep." So, Bryce had to do that for 10 minutes on one leg, 10 minutes on the other. Then we had to wait 30 minutes for each leg. Three and a half years old and he's saying, ‘Mommy, please make it stop.’ Screaming the whole time. It was horrible.”
“When Blake had it done, he had no clue. He was only barely 6 weeks old. All I had to do was nurse him and he was okay. So, there was a big difference from having it done with a 6-week-old and a three-and-a-half-year-old.”
“We sat there. I think the first one we were brave for. We were in denial. We kept thinking ‘It's not going to happen. It's not going to happen. There's something else.’ The second one, we just broke down and cried. We didn't want to do it again, but they had to rule out a false positive.”
“Our nurse, Cindy Capian, was the best.--She, unfortunately, retired last year. I think everyone in the CF family/community was like ‘No! You can't go!’—But, that day, Bubba’s parents were there with us. She sat us down and went over every question that we had. She sat there and explained it to us. She said ‘Your life is not going to be the same, but that's okay. You guys CAN do this. I don't want you to think about the negative.’ And the most important thing she told us was: ‘Do not read the internet. You will see so many sad stories.’"
“We think how blessed we are, because we don't understand. He shouldn't look like this. He shouldn't. He has the Double Delta F508. They are almost always sickly, they're in the hospitals, and you look at him and you're like ‘No.’ We talked about this just the other day… ‘Why are we so blessed?’ Being that he's going to be 14, there are battles. He doesn't want to do his treatments the way he's supposed to. We get blown away by how healthy he is. Shands has sent many people into our room and they ask what we're doing. We say ‘We do whatever you tell us to do.’ We have no idea. We've told them, ‘It's prayer.’ We have no other explanation, but that's God's power, right there. I think Bubba was there when the nurses came in and looked at his chart and were like 'He has Cystic Fibrosis?!' So, we don't understand, but we are truly blessed.”
Bubba: "God has a purpose for Bryce. That's the way I really feel. He obviously has a purpose for everyone, but there's some purpose for Bryce. There's a 6-year-old boy right now, that has Double Delta F508, and he's in the ICU right now. He's not improving. He's skinny, his lungs aren't functioning. It's just night and day between him and Bryce. That's what really gives us the reality check and also makes us ask ourselves 'why are we so lucky or blessed.' It's not fair. But it's also not fair for us to have a child with CF, either. But I do believe that God has a purpose for Bryce."
Heather: "He was diagnosed December 19, 2006. That was a very hard year."
Blake: "Ms. Aleta, read that sign over there."
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| The sign that Kelly Douglas has gifted the Folds with. |
Heather: “This past December marked 10 years since he was first diagnosed. He's only been hospitalized once. April 24th of this year marked 5 years since his hospitalization. I'll never forget it. It was my birthday present that year. That day, the day five years ago when they sent him to the hospital...we were broke. We were like ‘No, this is not happening.’ We went five years without ever having to go to the hospital--without ever having to experience that side of CF. We spent 14 days in the hospital. That is the minimum--14 days. You don't get out sooner than that.”
Blake: "I was there. I was four!"
Bryce: "We got to leave one day early."
Heather: "Yeah, they did end up letting us leave one day early."
Bubba: "We went in for a quarterly checkup, and his lung function was down to less than 10%. We hadn't realized that. We knew that he was coughing…But they did the test and his lung function was the lowest it had ever been."
Heather: "Yeah, hospital stays…they call them ‘tune ups.’ He gets a pic line put in, they do IV medication through that. I think it's every 4 to 6 hours. They had him on 2-3 different antibiotics."
Bryce: "Even in the middle of the night."
Heather: "Yeah, hospital stays…they call them ‘tune ups.’ He gets a pic line put in, they do IV medication through that. I think it's every 4 to 6 hours. They had him on 2-3 different antibiotics."
Bryce: "Even in the middle of the night."
Heather: "Every 2 hours he does his vest. They woke you up, they didn't care (she laughs). There was a time when I was like 'I'm going stir crazy, I have to get out now!' We actually took him out of the hospital…we didn't know we weren't supposed to. But we took him out, when he was doing better, and we walked all the way to Lake Alice. They asked us 'Where did you go? You're only supposed to stay in the hospital!' We didn't know. They were okay with it."
Heather: "Here are his medicines right now. One of your questions was 'how is his life different from his friends?' He has to take these--his dose right now is three with meals, two with snacks--So, he takes a handful of pills each day just with meals.”
(Shows another medicine) “They have actually taken this off of him. He only takes it now when he's sick. When Bryce is sick, he coughs. That is the tell-tale sign. When he is sick, he'll cough, and it's real mucous-y. We'll call Shands and they'll put him on an antibiotic, because they know it's not normal when he's coughing. Sometimes his sinus infections go straight to his lungs.”
“Pulmozyme--This is the hardest one for Bryce to take. Not quite sure why. It only takes 7 minutes. It's much like Albuterol treatments that babies take. This became available to Bryce when he turned 6. When he was first diagnosed, Pulmozyme was still in the trial phase. By the time he turned 6, it was released to CF patients. That was kind of awesome…we got to witness a medicine that was the trial phase actually become available to Bryce.”
“These are his vitamins. He's supposed to take two of these. These are also a battle. Again, not sure why. He doesn't like to take these either. He just got blood work done, so we'll see what his doctors say about that. They are pretty big. These are specifically made for A, D, E and K, because his body doesn't absorb those. So, they're higher concentration.”
“This is like the Holy Grail for Double Delta F508 CF--Orkambi. He got it when he turned 12. This medication goes outside of the cell, and tells the cell ‘you're not making Cystic Fibrosis,’ and reverses it. It's like goosebump-material. The first one was Kalydeco, Kalydeco goes inside the cell. He takes Orkambi twice a day with a high fat meal. His PFTs (Pulmonary Function Tests) are soaring because of this. They've now bumped it down to 6 years old. So, other children with Double Delta F508 CF will be able to get this when they turn 6."
Bubba: "That medicine right there is $23,000 a month."
Heather: "The first month, the insurance was like 'Okay, we'll send it.' Second, third, fourth, fifth, sixth, and seventh months the insurance denied it. They kept saying 'You didn't do his genetic testing on the right paperwork.' So, we had to send him back for genetic testing. They still denied it…for unknown reasons. Everyone at Shands was like 'He's the only one that's being denied!'"
Bubba: "It wasn't on an approved USDA form the second time it came back. So, it had to be USDA approved in a USDA approved facility that it had to be done at."
Heather: "Finally, I had to write a letter stating, 'I cannot believe that you are denying my child life-saving medication. We've provided all the documentation, our nurses have talked to you, our doctors have talked to you, our representative with the pharmaceutical company has talked to you…I am talking to you now. Please approve this medication!' Wouldn't you know it, they approved it.”
“Actually, the day we went down, the ladies group at Pine Grove, I'd told them, and they'd been praying and praying. The whole six-seven months we kept getting denied. But that whole time, the pharmaceutical company kept getting it to us. Finally, they all took me to the altar. We all prayed at the altar. We prayed 'God, we're turning this over to you. We're going to stop fretting about it, it's in Your hands.' We get out of church, and my phone pings that I had a message. It's a voicemail from the pharmaceutical representative. She says 'I just want to let you know, the insurance has approved it. I had to come into the office and wrap up your paperwork.' Who else does that? I sat there and cried! Bubba asked 'what is it?' I said 'The medication has been approved! It's been approved!' Amazing! We are so blessed to have Orkambi.”
“The one catch with Orkambi is that Bryce now has to start having yearly eye exams. When he first started it, he had to have blood work every 3 months. Then it went to 6 months, and now we're yearly. They do that because it puts such a strain on his liver, so they have to check the liver enzymes. They do the eye exam, because they found that some of the patients on Orkambi got cataracts.”
“It's a battle as parents, we have to decide the pros and cons of life-saving medications. When he was younger, we had to choose not to put him on ADHD medicine, although he has it, because we didn't want to put him on anything else that would affect his liver. His medication already affects his liver and we didn't want to add to that.”
“I was reading today that there is more coming down the pipeline. Each CF patient takes the medication differently. A child might have Double Delta F508, like Bryce, but it doesn't mean the medicine is going to work the same. Their bodies are just different. It's like the 6-year-old he had mentioned earlier; his body is just not responding. He's in the hospital 3-4 times a year.”
Is there anything that you feel most people don't know or understand about CF?
Bubba: "I will say: One thing, he's not contagious. When people first hear about it, they think it's something else--like it's mental or physical. He's not contagious….he's not going to give it to you."
Heather: "It doesn't affect him mentally."
Bubba: "He's a normal kid. He can do everything that everyone else can. He just has to have different accommodations. He just has different battles. He has to drink more water, more gatorade because of the salt. When he sweats during the summer, you can actually see the salt beading up on his eyebrows."
Heather: "If you go on pinterest, you'll see all these funny CF memes. One says 'CF mamas be like 'just put a little salt on it.' And you barely see the french fries for the salt."
Bubba: "Everything he eats has to have salt on it. He sweats it out so fast!"
Heather: "And high fat. We can't do low-fat."
Bubba: "They can't say it's scientific…but they say typically the heavier a CF patient is, the better their lung function is."
Heather: "Pretty much what he burns he has to consume."
You touched on this a bit, but have you noticed medical advances from the when Bryce was first diagnosed and now?
Bubba: "I think when Bryce was first diagnosed, the life expectancy was 32 or 33. Now, it's at 39 and a half. That's just within 10 years.
Bryce: "There's someone who's 70 that has it."
Bubba: "It has definitely changed a lot. When Cystic Fibrosis first came about, there were kids dying at 2 or 3, and they had no idea what it was."
Heather: "And it's a relatively new illness. It was only first diagnosed in 1951 or 1952, I believe."
Bubba: "So, we see, every year, the changes."
Heather: "Definitely the life expectancy changes have been huge."
Bubba: "And now with Orkambi, there is no telling what it's going to be."
Bubba: "Something else that people don't realize is that it's one of the most expensive diseases out there. Between the medications, the vest, everything…it's very expensive. The Orkambi is $250,000 a year. Plumozyme is $100,000 a year. His Creon's are now up to $500-600 a month."
Heather: "His vitamins are free. Yay. Which he doesn't like to take. The ones that are most expensive are the newer ones, and the ones aimed at his lung function."
Are there special precautions, like during Flu season?
Bubba: "We all have to get flu shots, obviously. But like with get-togethers….say…with family…if someone has been coughing, I have to say 'I'm sorry, we won't be there.' And people do get mad at us sometimes. They don't understand how badly it can affect him. We're not trying to be mean! But if you have a runny nose, or have been coughing, we'll have to leave. It's hard for people to understand that."
Heather: "When he was hospitalized, what put him in the hospital was a common cold for you and me. He got it and it just spiraled."
Bryce: "They brought me toys every night at the hospital."
Heather: "Yes! I was like 'no wonder kids never want to leave!'"
Bubba: "And he got to meet the Pouncey twins. He got to meet baseball players. He got to meet the drummer off of Newsboys. I was putting together a new toy every single night. I was like 'stop bringing him toys! I'm tired of these legos, dadgumit!' (he laughs).
Heather: "Bryce enjoyed it; however, we went stir crazy! That's for sure."
Bubba: "Shands does a great job of taking care of them and making them feel important. We just hope we never have to go back."
Heather: "I told him--Dr. Abu-Hassan--He had come in and said 'You guys are leaving.' I said 'Good, because we aren't coming back!' He said 'Don't say that.' I said 'Nope, it took us 5 years to get here…' And you know what, on April 24, it was another 5 years since we've been there. And I'm not going back, I told him! (She laughs). I told him! I cannot wait to see him. I hope I see him."
Heather: "I think in the beginning of Bryce's diagnosis, because he was doing so well, they just thought we were being paranoid. But when he got hospitalized, and they found out it was from the common cold, they've amped it up a little. They'll now let us know if someone has been sick or something before a get-together so we don't go and risk Bryce getting sick. I think Bryce's hospitalization was a reality check for everyone."
Bubba: "This disease is serious. I think because he is so healthy, people take that for granted. And it stinks because he has to miss out on some things. He hates us for it. (Bryce and Bubba start laughing). We're hoping one day he'll understand. But even we take it for granted sometimes, because he's so healthy."
Now, Bryce, other than the medicine, how is your routine different than your friends?
Bryce: "When I first wake up, I have to do my treatments. I have to take my medicine, obviously. I have to do my jacket twice a day, unless I’m sick. Then I have to do it every 4 hours."
Bubba: "Tell her about your vest."
Bryce: "It's a vest. It takes 30 minutes. I have to cough every time it beeps. It's to help break up the mucous."
Bubba: "You'll see shirts, like Heather said, on Pinterest, that say 'I beat my child nightly.' Before the vests came out, you literally had to beat your child on the chest."
Heather: "When we got the vest, it was $13,000, and we had to pay 10%. I like to tell people that it's kind of like a compressor. You have two vacuum hoses. As he grows, we call them up with the new measurements, and they send him a new jacket. It has a lifetime warranty.”
“You adjust it so that it covers his lungs, you buckle each strap in, tighten it up. He flips it on, and there is a quick start. It changes, it will compress really tight and shake loosely. Or it will compress really tight and shake fast. It just changes with every minute. It has 12 steps. That was something they told us from the get-go: "Do the quick start."
Bryce: "I'm up to 80%. Even sometimes 100% if I feel like it."
Heather: "That's how fast it shakes, and the compression he's at is 70%. When we went to the hospital, they had him on 30. He goes, 'You need to put it on 70.' And they were like 'What? Nobody ever does 70.' I was like 'We do. That's the automatic number on the quick start. He's been used to that since he was 3.' And like he said, some days he cranks it up to 100 if he's bored.”
"Once, Bryce dropped it, and it jammed the hoses into the machine. Luckily, they overnighted us a replacement. We boxed this one up, and sent it to them. They re-programmed it, updated it for us. They fixed it, even the wiring.”
“Shands is just floored by Bryce.”
Bubba: "Another thing about his routine is…He has to have blood glucose tests because he has a high chance of developing CF diabetes because of all of the sugar and such. We go every three months for a quarterly checkup, and we're there for 3 hours. They're checking his weight, they're checking his lungs, they're checking his PFTs…"
Bryce: "I always do good on those tests."
Bubba: "Because his lung function is good. We see psychiatrists, we see psychologists, we see dietitians, we see nutritionists. It's not fun, I'm not going to lie."
Heather: "You see basically every aspect of Shands when you're at CF clinic. And then the doctor comes in, you've got to talk to the doctor. Then the nurse comes back in…"
Bubba: "Which brings us to something else: When he's there, he has to wear a mask. CF people can't be within 6 feet of each other because of their germs. See, if I were to cough on him, it wouldn't be as bad as another CF patient coughing on him. Those germs are so much more high volatile. It could easily put him in the hospital (he snaps) like that. So basically, they're not able to be in the same room because their germs are just so much more highly contagious to one another."
Heather: "Even though we attend the same church, we have to be very careful of the functions that we attend with Eliza. There is a birthday party that we've been invited to, and they are going. I said 'I'm sorry, I would love to go, but we can't leave Bryce out. And that's okay."
Bubba: "We have to make sacrifices for our children. Even if I get a cold, I don't need to be around Bryce. It might take me 2 weeks to get over it, it might take him four months to get over it if it gets into his lungs. It could easily put him in the hospital."
Now if he's sick does he just not go to school?
Bubba: "It depends. If it's sinuses and it's draining, we'll send him to school. He doesn't like to miss school because he likes to hang out and socialize."
Heather: "Now, when he was younger…we were more cautious."
Bubba: "We pulled him out of daycare when we first found out he had CF, because of all the germs. Now, he likes to go to school. If he doesn't want to go to school, we can tell he's really sick."
Heather: "Usually we can tell, too, because he becomes really tired. The kid gave up naps when he was two. After two, he never wanted to take a nap. So, now, if he falls asleep during the day, we know something is up."
Bryce, what are some challenges that you face day-to-day?
Bryce: "Taking the Pulmozyme every day."
Heather (laughs): "Why don't you like to take the Pulmozyme?"
Bryce: "I don't know…because it's too much of a hassle to put together."
Heather: "What other challenges do you have?"
Bryce: "Not wanting to do my jacket on the weekends."
Bubba: "Friday night, Saturday and Sunday is a challenge because he wants to be a teenager."
Bryce: "Sunday nights I do it. I don't do it Saturday morning or Saturday nights sometimes."
Bubba: "Do you feel embarrassed when your friends are around?"
Bryce: "Not really."
Bubba: "Most of them want to try it out, anyways."
Heather: "All the cousins have tried it out except for the baby cousin. We even put it on my mom's dog once. He had congestive heart failure. My mom was like 'let's try it and see if it makes him better.' Bryce was like 'Okay!' He buckled him in and turned it on. He just sat there."
Bryce, if you could give any words of encouragement to someone with CF, what would they be?
 |
| The estimated daily amount of medicine that Bryce has to take just with meals. |
“Pulmozyme--This is the hardest one for Bryce to take. Not quite sure why. It only takes 7 minutes. It's much like Albuterol treatments that babies take. This became available to Bryce when he turned 6. When he was first diagnosed, Pulmozyme was still in the trial phase. By the time he turned 6, it was released to CF patients. That was kind of awesome…we got to witness a medicine that was the trial phase actually become available to Bryce.”
“These are his vitamins. He's supposed to take two of these. These are also a battle. Again, not sure why. He doesn't like to take these either. He just got blood work done, so we'll see what his doctors say about that. They are pretty big. These are specifically made for A, D, E and K, because his body doesn't absorb those. So, they're higher concentration.”
“This is like the Holy Grail for Double Delta F508 CF--Orkambi. He got it when he turned 12. This medication goes outside of the cell, and tells the cell ‘you're not making Cystic Fibrosis,’ and reverses it. It's like goosebump-material. The first one was Kalydeco, Kalydeco goes inside the cell. He takes Orkambi twice a day with a high fat meal. His PFTs (Pulmonary Function Tests) are soaring because of this. They've now bumped it down to 6 years old. So, other children with Double Delta F508 CF will be able to get this when they turn 6."
Bubba: "That medicine right there is $23,000 a month."
Heather: "The first month, the insurance was like 'Okay, we'll send it.' Second, third, fourth, fifth, sixth, and seventh months the insurance denied it. They kept saying 'You didn't do his genetic testing on the right paperwork.' So, we had to send him back for genetic testing. They still denied it…for unknown reasons. Everyone at Shands was like 'He's the only one that's being denied!'"
Bubba: "It wasn't on an approved USDA form the second time it came back. So, it had to be USDA approved in a USDA approved facility that it had to be done at."
Heather: "Finally, I had to write a letter stating, 'I cannot believe that you are denying my child life-saving medication. We've provided all the documentation, our nurses have talked to you, our doctors have talked to you, our representative with the pharmaceutical company has talked to you…I am talking to you now. Please approve this medication!' Wouldn't you know it, they approved it.”
“Actually, the day we went down, the ladies group at Pine Grove, I'd told them, and they'd been praying and praying. The whole six-seven months we kept getting denied. But that whole time, the pharmaceutical company kept getting it to us. Finally, they all took me to the altar. We all prayed at the altar. We prayed 'God, we're turning this over to you. We're going to stop fretting about it, it's in Your hands.' We get out of church, and my phone pings that I had a message. It's a voicemail from the pharmaceutical representative. She says 'I just want to let you know, the insurance has approved it. I had to come into the office and wrap up your paperwork.' Who else does that? I sat there and cried! Bubba asked 'what is it?' I said 'The medication has been approved! It's been approved!' Amazing! We are so blessed to have Orkambi.”
“The one catch with Orkambi is that Bryce now has to start having yearly eye exams. When he first started it, he had to have blood work every 3 months. Then it went to 6 months, and now we're yearly. They do that because it puts such a strain on his liver, so they have to check the liver enzymes. They do the eye exam, because they found that some of the patients on Orkambi got cataracts.”
“It's a battle as parents, we have to decide the pros and cons of life-saving medications. When he was younger, we had to choose not to put him on ADHD medicine, although he has it, because we didn't want to put him on anything else that would affect his liver. His medication already affects his liver and we didn't want to add to that.”
“I was reading today that there is more coming down the pipeline. Each CF patient takes the medication differently. A child might have Double Delta F508, like Bryce, but it doesn't mean the medicine is going to work the same. Their bodies are just different. It's like the 6-year-old he had mentioned earlier; his body is just not responding. He's in the hospital 3-4 times a year.”
Is there anything that you feel most people don't know or understand about CF?
Bubba: "I will say: One thing, he's not contagious. When people first hear about it, they think it's something else--like it's mental or physical. He's not contagious….he's not going to give it to you."
Heather: "It doesn't affect him mentally."
Bubba: "He's a normal kid. He can do everything that everyone else can. He just has to have different accommodations. He just has different battles. He has to drink more water, more gatorade because of the salt. When he sweats during the summer, you can actually see the salt beading up on his eyebrows."
Heather: "If you go on pinterest, you'll see all these funny CF memes. One says 'CF mamas be like 'just put a little salt on it.' And you barely see the french fries for the salt."
Bubba: "Everything he eats has to have salt on it. He sweats it out so fast!"
Heather: "And high fat. We can't do low-fat."
Bubba: "They can't say it's scientific…but they say typically the heavier a CF patient is, the better their lung function is."
Heather: "Pretty much what he burns he has to consume."
You touched on this a bit, but have you noticed medical advances from the when Bryce was first diagnosed and now?
Bubba: "I think when Bryce was first diagnosed, the life expectancy was 32 or 33. Now, it's at 39 and a half. That's just within 10 years.
Bryce: "There's someone who's 70 that has it."
Bubba: "It has definitely changed a lot. When Cystic Fibrosis first came about, there were kids dying at 2 or 3, and they had no idea what it was."
Heather: "And it's a relatively new illness. It was only first diagnosed in 1951 or 1952, I believe."
Bubba: "So, we see, every year, the changes."
Heather: "Definitely the life expectancy changes have been huge."
Bubba: "And now with Orkambi, there is no telling what it's going to be."
Bubba: "Something else that people don't realize is that it's one of the most expensive diseases out there. Between the medications, the vest, everything…it's very expensive. The Orkambi is $250,000 a year. Plumozyme is $100,000 a year. His Creon's are now up to $500-600 a month."
Heather: "His vitamins are free. Yay. Which he doesn't like to take. The ones that are most expensive are the newer ones, and the ones aimed at his lung function."
Are there special precautions, like during Flu season?
Bubba: "We all have to get flu shots, obviously. But like with get-togethers….say…with family…if someone has been coughing, I have to say 'I'm sorry, we won't be there.' And people do get mad at us sometimes. They don't understand how badly it can affect him. We're not trying to be mean! But if you have a runny nose, or have been coughing, we'll have to leave. It's hard for people to understand that."
Heather: "When he was hospitalized, what put him in the hospital was a common cold for you and me. He got it and it just spiraled."
Bryce: "They brought me toys every night at the hospital."
Heather: "Yes! I was like 'no wonder kids never want to leave!'"
Bubba: "And he got to meet the Pouncey twins. He got to meet baseball players. He got to meet the drummer off of Newsboys. I was putting together a new toy every single night. I was like 'stop bringing him toys! I'm tired of these legos, dadgumit!' (he laughs).
Heather: "Bryce enjoyed it; however, we went stir crazy! That's for sure."
Bubba: "Shands does a great job of taking care of them and making them feel important. We just hope we never have to go back."
Heather: "I told him--Dr. Abu-Hassan--He had come in and said 'You guys are leaving.' I said 'Good, because we aren't coming back!' He said 'Don't say that.' I said 'Nope, it took us 5 years to get here…' And you know what, on April 24, it was another 5 years since we've been there. And I'm not going back, I told him! (She laughs). I told him! I cannot wait to see him. I hope I see him."
Heather: "I think in the beginning of Bryce's diagnosis, because he was doing so well, they just thought we were being paranoid. But when he got hospitalized, and they found out it was from the common cold, they've amped it up a little. They'll now let us know if someone has been sick or something before a get-together so we don't go and risk Bryce getting sick. I think Bryce's hospitalization was a reality check for everyone."
Bubba: "This disease is serious. I think because he is so healthy, people take that for granted. And it stinks because he has to miss out on some things. He hates us for it. (Bryce and Bubba start laughing). We're hoping one day he'll understand. But even we take it for granted sometimes, because he's so healthy."
 |
| An article written in the Gilchrist County Journal when Bryce was selling T-shirts as a fundraiser. |
Bryce: "When I first wake up, I have to do my treatments. I have to take my medicine, obviously. I have to do my jacket twice a day, unless I’m sick. Then I have to do it every 4 hours."
Bubba: "Tell her about your vest."
Bryce: "It's a vest. It takes 30 minutes. I have to cough every time it beeps. It's to help break up the mucous."
Bubba: "You'll see shirts, like Heather said, on Pinterest, that say 'I beat my child nightly.' Before the vests came out, you literally had to beat your child on the chest."
Heather: "When we got the vest, it was $13,000, and we had to pay 10%. I like to tell people that it's kind of like a compressor. You have two vacuum hoses. As he grows, we call them up with the new measurements, and they send him a new jacket. It has a lifetime warranty.”
“You adjust it so that it covers his lungs, you buckle each strap in, tighten it up. He flips it on, and there is a quick start. It changes, it will compress really tight and shake loosely. Or it will compress really tight and shake fast. It just changes with every minute. It has 12 steps. That was something they told us from the get-go: "Do the quick start."
Bryce: "I'm up to 80%. Even sometimes 100% if I feel like it."
Heather: "That's how fast it shakes, and the compression he's at is 70%. When we went to the hospital, they had him on 30. He goes, 'You need to put it on 70.' And they were like 'What? Nobody ever does 70.' I was like 'We do. That's the automatic number on the quick start. He's been used to that since he was 3.' And like he said, some days he cranks it up to 100 if he's bored.”
"Once, Bryce dropped it, and it jammed the hoses into the machine. Luckily, they overnighted us a replacement. We boxed this one up, and sent it to them. They re-programmed it, updated it for us. They fixed it, even the wiring.”
“Shands is just floored by Bryce.”
Bubba: "Another thing about his routine is…He has to have blood glucose tests because he has a high chance of developing CF diabetes because of all of the sugar and such. We go every three months for a quarterly checkup, and we're there for 3 hours. They're checking his weight, they're checking his lungs, they're checking his PFTs…"
Bryce: "I always do good on those tests."
Bubba: "Because his lung function is good. We see psychiatrists, we see psychologists, we see dietitians, we see nutritionists. It's not fun, I'm not going to lie."
Heather: "You see basically every aspect of Shands when you're at CF clinic. And then the doctor comes in, you've got to talk to the doctor. Then the nurse comes back in…"
Bubba: "Which brings us to something else: When he's there, he has to wear a mask. CF people can't be within 6 feet of each other because of their germs. See, if I were to cough on him, it wouldn't be as bad as another CF patient coughing on him. Those germs are so much more high volatile. It could easily put him in the hospital (he snaps) like that. So basically, they're not able to be in the same room because their germs are just so much more highly contagious to one another."
Heather: "Even though we attend the same church, we have to be very careful of the functions that we attend with Eliza. There is a birthday party that we've been invited to, and they are going. I said 'I'm sorry, I would love to go, but we can't leave Bryce out. And that's okay."
Bubba: "We have to make sacrifices for our children. Even if I get a cold, I don't need to be around Bryce. It might take me 2 weeks to get over it, it might take him four months to get over it if it gets into his lungs. It could easily put him in the hospital."
Now if he's sick does he just not go to school?
Bubba: "It depends. If it's sinuses and it's draining, we'll send him to school. He doesn't like to miss school because he likes to hang out and socialize."
Heather: "Now, when he was younger…we were more cautious."
Bubba: "We pulled him out of daycare when we first found out he had CF, because of all the germs. Now, he likes to go to school. If he doesn't want to go to school, we can tell he's really sick."
Heather: "Usually we can tell, too, because he becomes really tired. The kid gave up naps when he was two. After two, he never wanted to take a nap. So, now, if he falls asleep during the day, we know something is up."
Bryce, what are some challenges that you face day-to-day?
Bryce: "Taking the Pulmozyme every day."
Heather (laughs): "Why don't you like to take the Pulmozyme?"
Bryce: "I don't know…because it's too much of a hassle to put together."
Heather: "What other challenges do you have?"
Bryce: "Not wanting to do my jacket on the weekends."
Bubba: "Friday night, Saturday and Sunday is a challenge because he wants to be a teenager."
Bryce: "Sunday nights I do it. I don't do it Saturday morning or Saturday nights sometimes."
Bubba: "Do you feel embarrassed when your friends are around?"
Bryce: "Not really."
Bubba: "Most of them want to try it out, anyways."
Heather: "All the cousins have tried it out except for the baby cousin. We even put it on my mom's dog once. He had congestive heart failure. My mom was like 'let's try it and see if it makes him better.' Bryce was like 'Okay!' He buckled him in and turned it on. He just sat there."
Bryce, if you could give any words of encouragement to someone with CF, what would they be?
Bryce: "Good luck."
Heather and Bubba, what words of encouragement would you give a parent who's child has been diagnosed with CF?
Heather: "It's not a death sentence. Don't look at it as that."
Bubba: "It doesn't define you. It's a part of you, but do not let it define you. You have to take the bull by the horns, and pull up your big boy pants and deal with it. You have to say 'this is life," and move on. You can't sit there and dwell. There is a time to grieve, because it does suck. But you can't dwell on the negative. I know that it may seem harsh, but I think if you were to just sit there and dwell on the negative of this disease, it'll wear you down. It will consume you, and you won't be able to focus on your child. It's life-changing, and life-altering. As a parent, you give up a lot for your child. But as a parent of a child with CF, you really give up a lot. And I would do anything to make sure that he was doing okay and is healthy."
Heather: "It's not the same. We had to plan our day around his treatments, we had to always make sure medication was with us. We used to sanitize the table, our hands. People at restaurants would give us dirty looks, but I didn't care. I think I'm still like that to this day."
Bryce: "We'll get to the restaurant and I forgot my medicine, and they get mad at me. (He laughs)."
Heather: "We're trying to give him some responsibility. So we've told him, 'Okay, Bryce, you're going to start being responsible for your pills. You know we're walking out the door, you better have them.' Because I've always had them in my purse, Bubba's always had them in the car."
Bryce: "But you have them in the glove compartment."
Heather: "We have done that, because he's forgotten a lot. We've gotten all the way to Chiefland and I'll ask 'Bryce, you have your pills?' 'No.' Then the other boys are like 'Thanks a lot Bryce, now we've gotta go home!'"
Bryce laughs: "And I say, 'Well, I thought you had them in your car.'"
Heather: "But life is not the same. I don't think we would know what life without it is anymore. His first three years was full of stress and sickness. When he was first diagnosed, it devastated us…it broke our hearts. We were consumed with all the negativity of it. But come the new year, we were like 'New year=New life.' Whatever they told us to do, we did it. It was hard for Bryce. He had went 3 and a half years without having to do that routine. Without having to take all that medicine. He got angry."
Bubba: "That's why, to this day, he hates applesauce. When they're young, and not able to swallow pills, you have to break the enzyme pills up into applesauce. To this day, he hates applesauce."
Heather: "I think we were in Bar-B-Q Bills, and he swallowed his gum, and I wondered if he could swallow his pills. I asked him if he wanted to try and swallow his pills without the applesauce. He asked 'I can?' I said 'Yeah, you want to try it?' He put it in his mouth, and he swallowed it. He said, 'I swallowed it!' So, at 4, he was swallowing pills at 4."
Bryce: "Sometimes I can swallow them without water. People at school are amazed that I can swallow like 3 at the same time."
Heather: "And I think that the kids at school have grown up with him, so they have become accustomed to it. He actually got in trouble last year, because part of his label on his pill bottle got torn, and it was the part with his name. The teacher thought he was taking pills that weren't his. His classmates stood up and said 'No, those are Bryce's pills. He takes those every day.' It touched me to know that his classmates stood up for him and let the teacher know that it was something he had to do."
Are there any helpful websites that you would give to anyone interested in learning more about CF?
Heather: "The main one is the Cystic Fibrosis Foundation website: www.cff.org. That's what I tell everyone. Go there. Don't go anywhere else, but there. And I like pinterest, because it's funny. You can totally relate to the memes on there. There are times when I'll send them to Bryce and he'll laugh and say 'that's a good one.'"
What are some blessings that have come out of this?
Bubba: "I would say that meeting the Pouncey Twins was really cool. Getting their autograph, and getting a picture with them. He got to play Hot Wheels with them. You see these 250 lb. offensive linemen playing Hot Wheels with him."
Bryce: "I really wanted to meet Tim Tebow, but he was at the hospital that day."
Bubba: "This year was cool because he got to be the honorary guest at the Tailgate. It's a yearly fundraiser. Only one CF person gets to attend. And Bryce was chosen as the honorary guest. He got to make a wish. We went on a Nickelodeon cruise for 7 days, thanks to the Make A Wish Foundation. He got to ride in a limo."
Heather: "That was his big thing."
Bubba: "He got to choose between meeting Jeff Gordon, going on a Nickelodeon cruise, and there was something else…I can't remember now."
Bryce: "If I was asked now, I would choose to meet Jeff Gordon."
Heather: "He was all about a 'big boat' at that age. 'Big boat, big boat! I want to go on a big boat!'
Bubba: "After a few days, we were like 'no more boats!'
Heather: "Yes, I don't ever want to go on another cruise again. But it was neat, we got to go to Puerto Rico. They had their own private island."
Bubba: "He gets to eat as much as he wants at school."
Bryce: "Sometimes, I'll go through all three lines in the lunchroom."
Bubba: "It's like the other night, he ate three sloppy joe sandwiches."
Heather: "That was the night before his bloodwork. He was like 'I'm not going to be able to eat tomorrow morning, I've gotta fill up!'"
What are some things that y'all are looking forward to in the future?
Heather: "Definitely the advancements of the medications. I do wholeheartedly believe that in Bryce's lifetime, they will have a cure for CF. Just for them to develop this Orkambi and Kalydeco,…you can almost taste it. It's right there. For them to develop a medication that can tell the defective cells 'stop what you're doing.'"
Bubba: "I'm looking forward to seeing what God has in store for Bryce's future. I know he's not much for public speaking now. But maybe it's going to be going and speaking and educating people. Letting people know that you can be this healthy, and you can overcome the struggles."
Heather and Bubba, what words of encouragement would you give a parent who's child has been diagnosed with CF?
Heather: "It's not a death sentence. Don't look at it as that."
Bubba: "It doesn't define you. It's a part of you, but do not let it define you. You have to take the bull by the horns, and pull up your big boy pants and deal with it. You have to say 'this is life," and move on. You can't sit there and dwell. There is a time to grieve, because it does suck. But you can't dwell on the negative. I know that it may seem harsh, but I think if you were to just sit there and dwell on the negative of this disease, it'll wear you down. It will consume you, and you won't be able to focus on your child. It's life-changing, and life-altering. As a parent, you give up a lot for your child. But as a parent of a child with CF, you really give up a lot. And I would do anything to make sure that he was doing okay and is healthy."
Heather: "It's not the same. We had to plan our day around his treatments, we had to always make sure medication was with us. We used to sanitize the table, our hands. People at restaurants would give us dirty looks, but I didn't care. I think I'm still like that to this day."
Bryce: "We'll get to the restaurant and I forgot my medicine, and they get mad at me. (He laughs)."
Heather: "We're trying to give him some responsibility. So we've told him, 'Okay, Bryce, you're going to start being responsible for your pills. You know we're walking out the door, you better have them.' Because I've always had them in my purse, Bubba's always had them in the car."
Bryce: "But you have them in the glove compartment."
Heather: "We have done that, because he's forgotten a lot. We've gotten all the way to Chiefland and I'll ask 'Bryce, you have your pills?' 'No.' Then the other boys are like 'Thanks a lot Bryce, now we've gotta go home!'"
Bryce laughs: "And I say, 'Well, I thought you had them in your car.'"
Heather: "But life is not the same. I don't think we would know what life without it is anymore. His first three years was full of stress and sickness. When he was first diagnosed, it devastated us…it broke our hearts. We were consumed with all the negativity of it. But come the new year, we were like 'New year=New life.' Whatever they told us to do, we did it. It was hard for Bryce. He had went 3 and a half years without having to do that routine. Without having to take all that medicine. He got angry."
Bubba: "That's why, to this day, he hates applesauce. When they're young, and not able to swallow pills, you have to break the enzyme pills up into applesauce. To this day, he hates applesauce."
Heather: "I think we were in Bar-B-Q Bills, and he swallowed his gum, and I wondered if he could swallow his pills. I asked him if he wanted to try and swallow his pills without the applesauce. He asked 'I can?' I said 'Yeah, you want to try it?' He put it in his mouth, and he swallowed it. He said, 'I swallowed it!' So, at 4, he was swallowing pills at 4."
Bryce: "Sometimes I can swallow them without water. People at school are amazed that I can swallow like 3 at the same time."
Heather: "And I think that the kids at school have grown up with him, so they have become accustomed to it. He actually got in trouble last year, because part of his label on his pill bottle got torn, and it was the part with his name. The teacher thought he was taking pills that weren't his. His classmates stood up and said 'No, those are Bryce's pills. He takes those every day.' It touched me to know that his classmates stood up for him and let the teacher know that it was something he had to do."
Are there any helpful websites that you would give to anyone interested in learning more about CF?
Heather: "The main one is the Cystic Fibrosis Foundation website: www.cff.org. That's what I tell everyone. Go there. Don't go anywhere else, but there. And I like pinterest, because it's funny. You can totally relate to the memes on there. There are times when I'll send them to Bryce and he'll laugh and say 'that's a good one.'"
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| When Bryce met the Pouncey Twins |
Bubba: "I would say that meeting the Pouncey Twins was really cool. Getting their autograph, and getting a picture with them. He got to play Hot Wheels with them. You see these 250 lb. offensive linemen playing Hot Wheels with him."
Bryce: "I really wanted to meet Tim Tebow, but he was at the hospital that day."
Bubba: "This year was cool because he got to be the honorary guest at the Tailgate. It's a yearly fundraiser. Only one CF person gets to attend. And Bryce was chosen as the honorary guest. He got to make a wish. We went on a Nickelodeon cruise for 7 days, thanks to the Make A Wish Foundation. He got to ride in a limo."
Heather: "That was his big thing."
Bubba: "He got to choose between meeting Jeff Gordon, going on a Nickelodeon cruise, and there was something else…I can't remember now."
Bryce: "If I was asked now, I would choose to meet Jeff Gordon."
Heather: "He was all about a 'big boat' at that age. 'Big boat, big boat! I want to go on a big boat!'
Bubba: "After a few days, we were like 'no more boats!'
Heather: "Yes, I don't ever want to go on another cruise again. But it was neat, we got to go to Puerto Rico. They had their own private island."
Bubba: "He gets to eat as much as he wants at school."
Bryce: "Sometimes, I'll go through all three lines in the lunchroom."
Bubba: "It's like the other night, he ate three sloppy joe sandwiches."
Heather: "That was the night before his bloodwork. He was like 'I'm not going to be able to eat tomorrow morning, I've gotta fill up!'"
What are some things that y'all are looking forward to in the future?
Heather: "Definitely the advancements of the medications. I do wholeheartedly believe that in Bryce's lifetime, they will have a cure for CF. Just for them to develop this Orkambi and Kalydeco,…you can almost taste it. It's right there. For them to develop a medication that can tell the defective cells 'stop what you're doing.'"
Bubba: "I'm looking forward to seeing what God has in store for Bryce's future. I know he's not much for public speaking now. But maybe it's going to be going and speaking and educating people. Letting people know that you can be this healthy, and you can overcome the struggles."
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| The Folds were part of the Top Fundraising Team and Top Individual Fundraiser for Great Strides in 2008. |
This is truly inspiring, what an amazing family. I'm so glad you were able to share their story
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