If you could describe your CF Journey in a few words, what would they be?
Emma - "Difficult, fun, and adventurous!"
Lisa - "I have to agree with Emma, but I would add in that it has been life-changing. CF is hard, period, but it has taught us the importance of living each day to the fullest, it has challenged our faith and showed us that God is faithful. And it has challenged our family unit and reminded us, we are in this together and that has made us stronger. CF has changed our life, and I dare to say...for the better!"
At what age did your family realize that something serious was wrong with Emma? And before that, was she pretty much enjoying a normal life?
Lisa - "I knew something was wrong around the time she was two weeks. She would throw up so hard she actually stopped breathing once. Matt and I rushed her to the ER and we were told she was a perfectly fine and healthy baby. She was ALWAYS sick, and I mean always. Coughing, runny nose, congested. She actually lived on a decongestant every day. She would projectile vomit any time she would eat (like something out of a scary movie) and she had more 'dirty' diapers than any baby I knew. I constantly took her to the doctor and told them something was wrong. She was hitting all her mental milestones, but none of her physical milestones. I was told I was a 'paranoid parent and I needed to learn to relax'!! On New Year's Eve 2007, Emma had a rectal prolapse which caused us to take her to the ER. It was there that a traveling doctor mentioned Cystic Fibrosis to us. We were transferred by ambulance to Valley Children's Hospital in Madera, CA for further testing. On January 2, 2008, Emma was diagnosed. She was 18 months old. So, no she definitely wasn't enjoying a normal life."
How hard is it for her sisters to deal with Emma always being sick and in the hospital?
Lisa - "It was hard for Emma and I to answer this one...so I asked Abby...Here's her response..."
Abby - "It's really hard. The hardest part is not having you guys around to do the normal things around here. I just really miss having you guys around. There are moments where Emma and I just like to sit around and talk and I really miss that when she's gone. I'm not normally too scared when she's in the hospital, unless she's having surgery or something like that, but we talk every night, so that helps.
This question is for Emma: Where do you find the courage to smile in almost all your photos?
Emma - "Well, it's easy!! (said with a smile and a giggle) I'm not worried about CF at that time. I'm just living in the moment, I don't think about death when I"m smiling or anything."
This question is for Lisa: Where do you get your energy to be an amazing mom? (you are much younger than me, can you send me some please)?
Lisa - "First off thank you...I definitely don't feel amazing or full of energy. I feel worn out and exhausted most of the time. I have learned to just keep pushing along though. I have shared this before but the day Emma was diagnosised I was really struggling with God and why He would allow this illness. After arguing with God, I stopped talking and finally just sat still...have you ever been freezing cold and had a warm blanket wrapped around you and felt your body relax? This was the feeling I had at that moment. I felt like God was telling me, "I'm not angry, I'm not punishing you. I trust you." From that moment, on January 2, 2008, I have walked in the fact that the God of the Universe TRUST me as Emma's mom. Now I have made and will make countless mistakes along the way, but I rest in the fact that I was chosen for this job...I find strength, comfort and energy in this truth. We have all be created for a specific task...Mine just includes taking care of a child with Cystic Fibrosis."
Will Emma be eligible for a lung transplant and will that help her?
Lisa - "At this time Lung Transplant is not even a topic of discussion. Emma's lungs are functioning well and we are happy with her current lung functions. Down the road, Emma may need a transplant but eligibility will be decided based on current infections, overall health along with many other factors. Emma currently has a bacteria that does limit the centers willing to work with lung transplant, however, this is something we will deal with when it becomes necessary...Lord willing that's a very long way away."
How is Emma doing now?
Emma - "I'm alright I guess...I suppose! I want to play tennis at school. I'm having night sweats but that is normal for me. I'm sooooooo excited about the new meds that will take the place of my IV meds. Like SOOOOOO excited!!!! I'll be able to take showers every day, not do IV meds every morning before school, get to spend the night at friends, not have to always rush home when we are at the store, or anything like that! But I am scared about how I will react to the new medicine, like coughing up blood or something. That would be really scary."
Lisa - "From a clinical standpoint, Emma is doing average. Her lung function did improve with her trip to Hawaii, but she has yet to return to her baseline. We are beginning to feel we may have a new lower baseline for her. Where this is frustrating, it is still high and we are thankful for that. Emma is currently in month six of IV medications due to Mycobacterium Abscessus. We are hoping to discontinue them this month and start two new medications in place of the IV's. With that being said, theses are two new drugs, we have data on them, but not a lot, so we are hoping to see some success with them. In addition to her battle with Mycobacterium Abscessus, Emma has an extremely high IgE (immunoglobulin E, which measures your overall reaction to allergies in your body). This number should be 0-200. Emma's has climbed to nearly 4,000. During her last bronchoscopy, we learned that she is still battling an extremely rare black fungi. Through my research I have learned that this rare black mold only effects approximately 27 CFers world wide and is the likely source of her high IgE, but until we can treat the M. Abscessus completely, we can't treat this fungi. Our prayer is that these new medication begin to attack the M. Abscessus, so we can begin to treat the fungi. Emma is also participating in two clinical studies right now, and we are honored to be a part of helping to make a difference for the future of CF."
What does Emma want to do when she is older? College? Career?
Emma - "Oh that's already planned!!! I'm going to move back to North Carolina and go to UNC for college. I'm going to study Marine Biology. Then I am going to move to Hawaii when I have my degree, so I can go deep sea diving and take pictures of animals and then learn about new animals. AND, I'm going to be a surfer all the time, when I'm in Hawaii. Oh and a stay at home Mom, that goes deep sea diving!"
What's it like being so awesome?
Emma - said laughing with a huge smile "it's pretty cool, I mean, it's alright I guess. You know how it be! Just kidding, just kidding!"
What annoys you the most about having CF?
Emma - "There's no freedom. It's like your trapped. Like I can't do what most kids, well I can do what most kids do, but I can't run two miles and still be good, because my lung won't let me. I can't even run a mile, I mean ooft. Ummm, and I'm always making sure I'm healthy. I feel like if people didn't know I had CF, then they wouldn't feel pity towards me. Like for example, if none of my teachers knew I had CF, then I would just be the quiet kid in class. But instead they make me move to the front of the class to be closer to the, and ask if I'm ok. They don't do that to anyone else. It's nice of them but I feel like they feel pity towards me, and I don't like that. I don't want people to look at me differently. I think 'Oh come on, seriously. I don't need your pity. I'm basically just like everyone else!"
What annoys you the most about being in the hospital?
Emma - "The FOOOOOD!!! Ugh it's disgusting!!! At least we have Door Dash!! But really it's probably knowing that all my friends are having fun and I can't do that. I'm just stuck there seeing the pictures on Instagram...and that's like...ugh!!! I have a phobia of missing out."
Lisa - "Definitely missing my family. Plus the food, lack of privacy and sleep."
What annoys you the most about taking Meds?
Emma - "They are sooooo annoying!!! I have to take medicine with every single meal I have, and I just want to eat and eat and eat and not take pills. I also hate having to worry about how many calories I eat, so I make sure I take the right amount of enzymes. And I hate swallowing all the pills I hate, they make me puke sometimes and that's not fun! And with IV meds, we are always watching the time and rushing to get home to do them. It stinks!!
Do you worry about your future?
Emma - "Sometimes, I do, sometimes I don't. It just depends I guess. Sometimes I worry that I won't live to have kids or live to see a cure for CF. Or live long enough to see Ayva or Abby as adults, like to see their jobs or how the grow up to be Moms or Aunts. Oh or that I won't live long enough to DRIVE!!"
What does it feel like to wear your vest?
Emma - "It's cool, I want the Afflovest so I don't have to worry about the tubing. Then I can more and stuff. I like making noises on it, it's funny. But it's long, like 45 minutes. It's boring, but I don't really mind it."
What's the worst part of IV meds?
Emma - "Having my port accessed so I can't take a shower everyday unless I'm wrapped up. And having to get poked every week for labs. And having to base my life around meds. For example, during youth I have to stop and get hooked up and when I go to school I have the med ball in my front pocket just sitting there. I don't want anyone to see if or for it to fall out, so it's frustrating."
Lisa - "They are exhausting!! You are constantly watching the clock so that you stay on schedule. It requires a lot of storage and organization. But I am so thankful we have the ability to do home IV meds, and stay out of the hospital."
Best hospital stay?
Emma - she had to think about this for awhile "I think when I was in UNC and could order all the sushi I wanted! I had like three California Rolls one time!! I love UNC!"
Lisa - "This is a tough question!! The time she was admitted for her 7th birthday was astounding. The ways that people reached out to make her birthday wish of 100 cards come true, is still breathtaking. We had two amazing stays at UNC with my mom surprising us for one visit and some of my good friends surprising us for another admission!! We did face masks, bible journaling and drank lots of Starbucks, it made a hard situation better. I think the best stays are when we can feel the love and support from friends and family. They definitely keep us going!
Worst hospital stay?
Emma - "I feel like it was one of our recent ones. I think our last stay, the most recent. We had just got out of the hospital and then we had to go straight back. So I had to miss everything for a month."
Lisa - "September 2011!! Emma was five years old and was hospitalized due to failure to thrive. She ended up needing her first sinus surgery along with the removal of her adenoids. Then she needed a nissen fundoplication along with a gtube placed. This was a long and difficult admission. The next would be January 2019! We spent the entire month in the hospital due to an insurance lapse...it was HORRIBLE!!"
Tell us about Hawaii!
Emma - "I don't even know how to put it in one word... there has to be one word that is is the most...most then glorious, more than WOW...more than that! Bigger than epic! It was just so amazing. Soooooo amazing!!!! I love Make-A-Wish, there was nothing that was complicated, everything was so nice, and we just kept going and going with things. That was a good thing because, what if they only gave us one thing to do, it would have been boring. But they planned everything out and it was so smooth, fun and perfect. I loved everything about it!!"
Lisa - "I wrote a blog about our experience. You can read it here: Wishes Do Come True "
How hard is it to be away from your dad and sisters while in the hospital?
Emma - "It's VERY hard, because I have noone to pick on except Mom and she gets offended hahahaha. Just kidding. But it's hard because I have noone, other than Mom, to hang out with and I'm just stuck in my room watching tv or something."
Lisa - "This is hands down the hardest part of being in the hospital. It just feels like part of my heart is missing. I have missed so many events for Abby and Ayva due to being in the hospital. Thankfully, God has created them to be understanding and compassionate, but it is still hard for me. As a mom, I want to be present in their lives and feel like I miss so much when we are gone. It has also been very challenging for Matthew and I to learn how to communicate well while I'm gone and to still stay in complete unison when we are living two separate lives for weeks. He basically becomes a "single dad" and manage everything at home, from making breakfast, lunch and dinner, to morning drop-offs and afternoon pickups. He balances everything, plus working full time, with grace and love. I couldn't be more thankful to be marriage to such an amazing man!!"
What would a normal, CF free life look like to you?
Emma - "I feel life would be so different. I wonder if we would have ever lived in North Carolina or Texas. Maybe we would have stayed in California or maybe we would have moved to like Montana or something. It would just be so different and that's strange to think of!"
Lisa - "I have no clue...I'm really not sure how different our lives would be. This journey has absolutely molded and shaped us into the people we are today. I can't imagine what life would be like if this was never an issue for us. I do know, I would love to travel more!! Our life is planned around hospitals, medicine and treatments... so the thought of freedom from a medical perspective is hard to wrap my head around, but I would love to travel!"
Are you thankful for CF?
Emma - "Yes!! People have been really inspired by my story and I have always wanted to be an influencer. Plus I get lots of support and love from so many people. I wouldn't have been given the chance to surf with Bethany Hamilton if I didn't have CF, so that's another amazing thing."
Lisa - "I hate cystic fibrosis in general. I hate that CF is claiming the lives of children and young adults and I hate that Emma has to suffer from this disease, but with that being said, I am so thankful for all the lessons we have learned. I am grateful for the friends we now have because of CF, I am humbled by the love and support we have received and I am astounded by the many. many ways God has shown His faithfulness!"
Would you change having CF?
Emma - " NO!! Because it's a disease that's not really known. Unlike cancer, CF is rare and unknown. SO I want to be that person that puts it out there. I know the movie, "Five Feet Apart" is doing that, but I want to be out there talking about it and bringing awareness! I want to inspire people... I want people to realize they are special even if they feel different, or have a disease, or look different or feel like they aren't normal or anything like that. I want them to understand that they don't have to feel different, they can be who they are, and who they want to be!! Who cares what people think! Most of the kids at my school don't even know that I have CF, they just think I am a normal person, because I never show them I'm different. But as soon as I tell someone they act strange. They're like 'oh my goodness I feel so bad for you' and then ask questions like 'are you gonna die' and I'm like 'yeah I'm gonna die, but you're gonna die, everyone is gonna die, it's just life. There's nothing you can do about that.' I want people that are struggling to understand they can keep going and to NEVER give up!!"
Lisa - "Well my daughter pretty much summed this up!! No, I would not change her having CF...Emma's life has taught us about God's unfailing love and has given us an opportunity to share His love with many people. We have learned how to endure and overcome so many obstacles due to CF and through each step, we have become stronger, wiser and more sensitive to others fighting battles."
Do you feel like you make decisions or act certain ways because people are watching you?
Emma- "Well doesn't everyone act different if someone is watching them? I'm always going to be positive and I'm not going to just collapse with bad stuff, and say 'this is it!!!' I just know the hard stuff will be over... for instance... it's only IV meds, it will be over in an hour and then I can go on with my life I'm not controlled by things, I can push through it. That's just who I am, it's how I was raised!"
Lisa - "Overall I feel like in many situations, I stop to think of what type of example I want to be through it. I also believe that anything put in front of us concerning Emma is an opportunity to share God with others. So in those circumstances I am more aware of things so I can share them with y'all."
Who is your biggest influencer/Inspiration?
Emma - "Bethany Hamilton!! She has been for about five years! I want to surf, inspire people and tell people about Jesus! I like everything about her and I want to be influence people like she does!"
Where do you want to surf?
Emma - "I'd like to surf Hawaii again, of course!! Plus I'd like to try to surf in the Gulf of Mexico, since it's here in Texas. And in Mexico. I just want to everywhere that has clear water!!"
Best hospital food/Worst hospital food?
Emma - "UNC!!! UNC has the best hospital food hands down!! The had a 10 page menus with different types of food, like Chinese food, or sushi, salad bars or custom sandwiches. They had burgers, fries, BBQ, man they had everything. I miss it!! And Texas Children's has the worst! There is not much to choose from and it's all just gross."
Lisa - "I agree with Emma 110%!! UNC has the best and most cost effective food. Texas Children's has the worst and most expensive food."
Favorite Hospital/Least Hospital?
Emma - "Valley Children's is where I grew up, so that's kinda like my forever home hospital. I liked that Kaiser, Los Angeles had an outdoor play area for me with bikes and stuff. And UNC because they have the BEST food! Texas Children's is my least favorite hospital because I'm locked in my room, and I can't order good food. Texas Children's doesn't give me places to go, except to walk in a circle or stay in my room. It stinks, but I do like some of the nurses."
Lisa - "Valley Children's was our home hospital for so long. It's where Emma was diagnosised, it's where we spent most of her hospital stays and it's where I learned the importance of advocating for my daughter and that nurses are the most amazing people in the world. But VCH slowly began to decline and Emma's care was compromised. So when we left, it was easy to say goodbye. I appreciated Kaiser Los Angeles, they were helpful and compassionate with us. I felt Emma was loved and that the doctor fully understood my expectations and made sure I was always comfortable. UNC is where we finally received answers we had longed for. It's where the pieces finally fell into place and I learned the value of our immediate family unit. It was also one of the hardest hospitals for us, because we were across the country from our closest friends and family, so it felt very isolating. Texas Children's has been wonderful for continuing the care started by UNC. I have been happy with their ability to work together to find answers, but also challenged by the lack of knowledge regarding some of Emma's current issues. And finally, Children's Los Angeles is the WORST hospital we ever went to!! Many year later when I think of CHLA I literally get angry at the horrible care Emma received. I think I have PTSD from CHLA!!!"
Do you have CF friends in the hospital? What's that like? Special memories with them?
Emma - " YES! It's really cool to me to have other CF friends because I don't feel alone. My favorite memories....ummmm... wheelchair races with Jordan, but he died. And Teresa that would do treatments with me, but she died. And Kaila from North Carolina!! I loved her, she always made me feel special. She sent me cards and even fruit in the hospital. Remember when we saw the butterfly at our hospital window after she died. She was special. Oh, and Macaela would do treatments with me too, doesn't she has a baby girls now? (yes, she sure does!) It's really hard to loose CFers that I get close with. I just hope they are in a better place. The hardest part is thinking that it could be me instead of them...It's just really hard!"
Lisa - "We have connected with hundreds of CF families over the years, some in person, but most online. I am actually an admin for a CF Mama's group of thousands of CF moms on Facebook. Since we can never have our kids in the same room, it's hard to have a close relationship with them. But the CF community is a tight community and I know that if I need to talk to people who truly get what I'm going through I reach out to them!! They are my biggest advocate in my darkest hours. I have rejoiced in triumphs with these mamas, figured out major issues with our kiddos while admitted. I have prayed over treatments, transplants and basic life troubles with them. These moms are my tribe (even though many of us have never met in person)!! They are my friends, my family, my support. Unfortunately, I have had to watch countless Moms and Dads say goodbye to their young children and it never gets easy. Every loss we face, is brutal and rips a piece of your heart out. You find yourself in a very strange place when you face a loss in this community...your heart breaks for the family and warrior you have come to know and love, but at the same time your selfishly breathe a sign of relief that it wasn't your child...yet. I'm sure that sounds horrible, but it's the harsh, painstaking reality."
What is your daily routine? Is it hard to do?
Emma - "I have to take a bunch of pills every morning, along with IV meds, inhalers, treatments. At night I have more pills, IV meds, treatments and night time gtube feeds. It's not really hard, just more annoying that anything."
Lisa - "My daily routines consist of preparing everything for Emma... separating all her pills, mixing and preparing her IV meds, Doing her breathing treatments and CPT (Chest physiotherapy). I also have to make sure everything is properly cleaned and sanitized, which takes a while. I prepare all her night time feeds and try to make sure she gets all the calories she needs to thrive. Thankfully Matthew helps anytime he is available, and her sisters are good about staying on her to take her pills, more like they annoy her until she takes them hahaha. It's not hard to do these things, but it is definitely exhausting!"
Is it curable?
Lisa - "No. Cystic Fibrosis is terminal. Unfortunately, we do not have a cure at this time, but thankfully we have medical advance that provide treatments to help prolong life. The average age span of someone with CF is 34 years old."
Is Emma taking Orkambi?
Lisa- "No, Emma wasn't able to tolerate Orkambi. It caused her to have an extremely tight chest, making it difficult for her to breathe. She is currently on Symdeko. Things have been going well on it."
I'm sure living with CF has taught you all to re-evaluate your priorities and truly count your blessings, for the little things are often the BIG things. So what are some of your new priorities... or even moments/occasions that get you through the tough times?
Emma - "My priorities are God, my parents, my sisters, the rest of my family and friends. The things we talk about a lot is good memories like going to the beach an surfing. Sometimes we talk about things we are looking forward to, but mostly we just remember good times."
Lisa - "I think CF has absolutely taught us to value each day. We rejoice in the healthy days and pull together in the sick days. We cherish our time together and do our best to make memories together. During the hard times, we all lean on fond memories. We think of happier times, and memories like time spent at the beach, on the lake, or things that make us laugh about each other. We have learned to find joy in the simple things like chicken strips and tamales in the hospital on Thanksgiving, getting out of the hospital hours before Christmas Eve, birthday parties in the hospital, and just being together, period. This last hospital stay, in January, thinking of Emma's upcoming Make-A-Wish trip helped us push through the hard moments. We would talk about things we wanted to do, see, or eat!!! We would imagine what it would be like to meet Bethany Hamilton, and I will say that our thoughts during that admission couldn't compare to how amazing the trip actually was. I'm certain that we will talk about that trip for the rest of our lives. My priorities are God, Matthew, my girls, my ministries at church, and the rest of my family and friends."
For Emma: do you have or would you want to plan to be a public advocate for CF?
Emma - "YES!! I would like to share my story with others so they can learn about CF. I feel like I am a good role model and I would like to encourage others to keep going and never give up.
What do you each like to do to stay busy in the hospital?
Emma - "Watch TV! Netflix is the best!! This last hospital stay I almost watched the entire series of "Friends". I like to color, draw, and play my ukulele. I spend mot of my time resting though."
Lisa - "I love to Bible Journal, paint, do anything crafty...actually, most of you would laugh at how many craft supplies I bring with me. I have even brought a sewing machine before hahaha. I read, watch movies and waste time on social media. I also blog, write and try to entertain Emma."
