One family's fight against CF.
One family's fight against CF.
Hearing "Your child has cystic fibrosis."
Hearing "Your child has cystic fibrosis."
I will never forget hearing “Your child has cystic fibrosis” on that fateful first day. Hearing my child's name in the same sentence as terminal disease felt like a harrowing blow to the gut. A sentence that took Paige's doctor less than 2 seconds to deliver had me instinctively doubling over and whimpering in pain.
In the days and weeks following Paige's diagnosis, the overwhelming emotions faded into the background as I spent most of my time and energy following the intense treatment regimen designed to keep cystic fibrosis (CF) at bay. But without warning, CF would rear its ugly head and pull me right back to the devastation I felt that very first day.
Over the years, I slowly but surely discovered ways to fight this unseen enemy. The following "tactics" helped me replace my feelings of despair with hope:
1. The love and help from those around us. Paul and I grew up learning to deal with things on our own. With Paige, we quickly realized we needed help to keep our family unit healthy and strong. After struggling on our own for countless months, we swallowed our pride and started asking those around us for help. And guess what? It worked marvelously! Whether it was babysitting, meal preparation, yard work, whatever - having the courage to ask for help relieved the burden on the darkest days.
2. Getting involved with CF families. Nothing felt better than talking with other parents and CF adults that completely understood what our family was going through. They gave me the perspective I needed to hear, and reminded me that we must never let CF control our lives. Over the years, I have gotten some of the best and most effective tips and advice from other CF parents and adults with CF.
3. Volunteering to help others. Following Paige’s diagnosis, people came out of the woodwork to help us out. Family, friends, neighbors, complete strangers (!) – their love carried us through the worst of the worst. Their selfless acts changed each member of our family. After experiencing first-hand how love heals and strengthens, we had no choice but to try to give that same gift to others. Helping others reminds our family how blessed we are, and keeps our hearts from getting hard.
4. Finding doctors we could trust. When Paige was first diagnosed, the medical team treating her took a very aggressive and invasive approach to her care. This approach did not sit well with us, so we decided to get a second opinion at another institution. From the very first visit at the new CF Care Center, our concerns and fears diminished as we instinctively knew their advice was right for us. Once we had doctors we could trust, we no longer felt like we had to become medical experts in an effort to make sure Paige got the care she needed. And having less to do...well, what a relief!
5. Learning alternative ways to supplement Paige's care. We are so fortunate to have so many supplemental treatment modalities available to us today. Whenever western medicine doesn't have a way to treat something, I do not hesitate to research what else is out there. Over the years, we have seen benefit from the following alternative treatments: Chinese herbs (under the guidance of a licensed practitioner) to help with appetite; dietary therapy, Tui Na massage, cupping, and moxibustion to help with colds, sinus problems, and stomach pain; yoga and guided imagery to help with insomnia; and play therapy to help cope with CF.
6. Becoming more spiritual. Before Paige's diagnosis with CF I actually thought I was in control of my life. After helplessly watching Paige endure the pain chronic disease inflicts, I quickly realized I was in control of nothing. It only took one particularly horrible night of watching Paige suffer for me to fall to my knees, look upward, and cry out for help. Amazingly, God heard my plea and answered my prayer. Since that day, I read my Bible, try to follow His rules and work to serve Him. In return, He carries me through the bad days and fills me with a peace and joy I never knew before.
It’s a CF sucks day. I just heard updates on two kids Paige’s age battling CF: one is in the hospital for who knows how long, and the other needs a liver transplant but will not be listed because she is too sick to survive the surgery.
Before Paige’s diagnosis, I never thought about dying children. I had lots of compassion if I caught a 2-minute blip about one of them on the nightly news, but I didn’t feel compelled to take action. I focused my time and dollars supporting research endeavors that could one day benefit me; like breast cancer, heart disease, diabetes, and multiple sclerosis.
After Paige’s diagnosis, parents of children with chronic diseases started coming out of the woodwork. They were everywhere! I kept asking myself why I hadn’t noticed them before? Then, I read a quote by Frank DeFord (a father who lost his 8-year old daughter to cystic fibrosis): “I think many of us have convinced ourselves that children don’t die anymore, not in the latter half of the 20th century, not in the United States of America, and certainly not in the suburbs.”
The reason we host our WITH ONE BREATH event each year is because chronic disease hurts. The pain of a failing body callously introduces a child to agony. This war between disease and child catapults the entire family into a state of fear, despair and hopelessness. Our only hope is to get our message out to the masses and pray they will join us in our fight.
I humbly ask you to look around and notice the children that are fighting for tomorrow. Instead of asking what you can do to help their family, take action without permission. Buy gas cards to cover the trips back and forth to the hospital, offer to babysit their children, bring meals over, donate money to research, send a card offering encouragement, visit them in the hospital, help with yard work, pray for their health...whatever! With your help, we can and will make a difference; one disease at a time.
Siblings and CF
Siblings and CF
Chronic disease is high maintenance. The battle to quell progression requires time-intensive treatments, expensive medications, and frequent hospitalizations. This daily fight places stress on the entire family unit; including siblings. While research on siblings of children with chronic disease is often contradictory, it shows that siblings generally tend to internalize stress, depression, guilt and anxiety related to the illness, and often feel overshadowed by the disease.
I’ll never forget the afternoon I heard Brooke’s quiet yet heart-wrenching sobs coming from her bedroom 2 years ago. I peeked around the corner, sat upon the edge of her bed, pulled her into my embrace and asked, “What’s the matter?” Through wet eyes and dark, matted lashes, she painfully whispered, “I don’t like myself. Everyone likes Paige, but nobody likes me.” My broken heart rendered me speechless. I silently held Brooke’s deflated spirit for several minutes before choking out,“Oh Brooke, you are so special. Please don’t say that.” While words of wisdom escaped me, instinct had me carrying her wilted frame to the glider chair tucked away in the corner of her bedroom. As we gently coasted back and forth,I hoped with all my heart that the soothing motion would somehow heal her pain.
Once the sobs ended and the tears dried, I resolved to do everything in my power to make this boo-boo “all better.” As part of my newfound mission, I gathered advice from other parents, talked to a counselor, purchased and read the top recommended books, carved out one on one time for Brooke each week, and avoided a few social settings that seemed to be bruising Brooke’s self-esteem. A couple weeks later, the sparkle was back in her eyes, the spring was back in her step, and I happily laid the whole incident to rest.
Then, a few weeks later, the pharmacist called Paige by name while handing off one of her prescriptions, and I saw the light go out in Brooke’s eyes. I inquired, “What’s the matter?”, and her sad voice replied, “I wish I had cystic fibrosis.” While feelings of failure gnawed at my stomach, I stood there quietly wondering where things had gone wrong. As my desperate thoughts started spiraling through a list of possible interventions, reason and logic screamed loud enough to get my attention:
“Your job isn’t to teach Brooke how to deal with Paige’s disease, your job is to love and comfort her; show her what a gift she is...as she is. If you can do this, she will learn on her own how to handle the hurts life sends her.”
By focusing on Brooke’s needs over the years, I have learned that she must have 10-20 minutes of individual time with me each day to feel special. She also needs dedicated family time each week to remind her how important her role is to our family unit. As Brooke receives what she needs to thrive, I see compassion, empathy, independence and resiliency replacing the shadow of stress, guilt and anxiety CF tries to lay upon her. By recognizing Brooke will always have her own burdens to carry, our family has been able to better support her as she copes with the effects of CF in her own unique way.
Following her diagnosis with cystic fibrosis (CF) at age 2, Paige was immediately hospitalized for 8 days. During our hospital stay, I remember a physician warning me, “If you want your daughter to grow old, keep her away from viruses.” This advice sent me into a tailspin! Was he telling me that the length of Paige’s life was my responsibility? If so, should I let her continue to go to daycare? Should I allow her to touch shopping carts in stores? Should she be allowed to play with friends when they had a cough, sneeze or sniffle?
On the way out of those hospital doors, I safely zipped Paige in an imaginary bubble - determined to do whatever it took to keep her safe. Over time (and with the help of an amazing friend with CF), I realized the more I let CF govern our lives, the less of a life we all had. Thanks to my growing faith in God, and the love and support of our friends and family, I found the courage to let go. Instead of spending my time and energy avoiding Paige’s death, I unzipped the bubble and set her free to live life.
I still recognized that viruses and bacteria posed a serious threat to her health. For Paige, viruses would frequently lead to bacterial infections in her lungs, and some of these bacterial infections had the potential to develop into life-shortening. The cold and flu prevention literature I read told us to avoid sick people, wash our hands frequently and keep our hands away from our eyes, mouth and nose. With Paige, we generally found these tips to be worthless– after all she’s a kid that attends daycare, school and Sunday school...AND constantly bites her fingernails!
We set out on a journey to learn tips that would help us minimize the impact cold and flu season had on our household, yet didn't take much time or effort to implement. The tips we've accumulated over the years have been influenced by the medical journals, coursework in Chinese medicine, and trial and error. Please note that while this information helps our household, we ALWAYS bring Paige in for routine visits at the CF Center and start antibiotics (or other medications) when the doctors advise us to do so.
Tips to Avoid Colds and Flu
· Disinfect hands with an alcohol wipe or hand sanitizer every time we get in the car.
· Change household hand towels every 2-3 days.
· Change bed sheets once per week.
· Have guests use paper towels instead of hand towels in bathrooms.
· Spray the sink and shower drains weekly with a disinfectant.
· Do not sit in whirlpool tubs (or turn the jets on in a “sunken tub”).
· Train family members to cover their cough when sick, and have the sick individual use their own designated bathroom (which everyone else avoids until the cold is no longer contagious).
· At the first sign of a cold symptom, take Echinacea up to 3 times each day. Note: we did not give Paige herbs until she was old enough to communicate how she was feeling (age 8).
· Take a Daily-C chewable tablet each day.
Tips for Fighting Off Infections
· Visit the CF center for a throat culture to determine if antibiotics are needed.
· If possible, lengthen airway clearance treatment times (we use a lower frequency for an extra 5-10 minutes).
· Start Tamiflu within the first 24 hours of possible influenza, or give prophylactically if someone else in the house has been diagnosed with influenza.
· Drink orange tea 3 times each day to loosen phlegm (peel organic orange, place 5 strips of the peel in 1 cup of water, boil for 5 minutes, strain and drink the water).
· Drink warm water with honey to soothe coughing.
· Eat lots of pears, almonds, broth soups and green or yellow beans to strengthen the lungs, and avoid icy cold beverages or foods.
· Pray for healing (John 14:14 is a favorite).
· Spread extra strength Tiger Balm on the chest at bedtime.
· Spread essential oils on the back at bedtime (Eucalyptus Globulus, Frankinsense, Basil or Peppermint are favorites).
· Gently massage the following meridian points: LU7, LU 5, LU 3, CV 17-21 if tender, and UB 13.
· Use a kids’ Breath Right strip at bedtime and sleep with an extra pillow if the nose is congested.
· Breathe in steam from hot shower to loosen phlegm and soothe coughing.
Hope for Newly Diagnosed Families
Hope for Newly Diagnosed Families
You are not alone. There are countless people fighting alongside you, and we will not rest until CF stands for Cure Found.
Only once in life have I felt a pain so intense it brought me to my knees and curled me into a little ball like an inchworm when touched. It was the day I answered our home phone and heard a nameless, faceless doctor tell me our daughter Paige has cystic fibrosis. After picking myself up off of the floor in complete despair, I wrote the following in a pretty little journal I keep for Paige:
“Today I lie here thinking of what to write...what profound statements can I make to my daughter the day I learn she has cystic fibrosis? I can’t say the diagnosis is a surprise; after all, I’m the one that made the doctor run the test. I can say that hearing confirmation of the diagnosis has me doubled over gasping for air. I feel numb inside. I have heard people tell me that I may have to watch my daughter die today.
I am so sorry you have been chosen to bear a weight this great, Paige. My thoughts are everywhere. Part of me wants to hold you and shield you, while another part of me feels a resolve to be firm and cut you no slack—as if it might prepare you for what is to come.
When I read about all of the additional therapies, drugs, and dietary guidelines we will now need to follow each day, I feel tired. I honestly don’t know if I have what it takes. As a working mom I already feel average at best, and now you need me to be better than average.
I hope and pray I don’t let you down, daughter. I am so scared of losing you, Paige. I don’t know if I’d be able to live without you. I will pray every night that God smiles upon you. I love you.”
For days, weeks, and even years following Paige’s diagnosis, I worried about the grave casualties she might face in her battle against CF; pneumonia, diabetes, intestinal blockage, lung transplantation, death. Haunted by the unknown, I started living life in fear of her death.
It wasn’t until I started meeting adults with CF in their 50’s and 60’s that I realized I had a choice to make: I could teach my daughter to live in fear, or show her how to live with hope. Hope is having faith in things unseen. While I do not know what Paige’s future holds, I choose to live life knowing she will defeat CF.
There are many, many examples of people with CF following their dreams, getting married, having children, and growing old...and Paige is going to join them. Paige understands this is a battle that must be fought, but she also knows it is a battle she will win.
The journey with CF feels impossible at times, and definitely has bumps along the way, but knowing I do not walk this path alone gives me strength. Seeing the billions of dollars (yes, billions) being invested in cure-finding research, as well as the many new life-extending medications that have been made available to Paige over the years, gives our family the courage we need to live a hope-filled life!
Big virtual hug!