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It’s been a very interesting year for the Traver girls. Shortly after the 2016 Cycle for Life, Lilly’s BMI crashed from the 60th percentile to the low 20th percentile in a month (that’s roughly a loss of 2 lbs). Throat cultures showed pseudomonas (the bad bug that we work hard to prevent) and MRSA. Pseudomonas has been found to cause long term lung damage in patients with CF. The long term effects of MRSA is still unknown, however, we decided to try to eradicate that as well. Shortly before Thanksgiving, we began the eradication protocol. This involved everyone who comes in contact with Lilly having to use a mouthwash and a nasal ointment to kill off any potential bugs. We also wiped all toys down with Clorox wipes each night. Lilly was on 2 oral antibiotics for 2 weeks and then a new antibiotic for an additional 2 weeks after that. She was also on an inhaled antibiotic for the entire 4 weeks. At the end of that (just before Christmas) we found out that she had successfully eradicated the MRSA, however, the pseudomonas was still present. Unfortunately this meant that she’d have to get a PICC line and begin a course of 14 days of IV antibiotics, followed by another month of oral antibiotic along with 2 months of inhaled antibiotic. Being new to the PICC line game as parents, we were pretty determined to keep her inpatient at Cincinnati Children’s for the duration of the 14 days. Lilly had other plans and it doesn’t take a rocket scientist to figure out what happens when you lock a 3.5 year old child in a room with a parent for 14 days (answer: the child drives the parent crazy). We lasted 4 days before we asked about finishing the IV regime at home. We were home on day 6. We successfully finished it out with the help of Children’s Home Health care and went on to eradicate the pseudomonas just in time for Lilly’s 4th birthday.
Luckily, the spring was fairly uneventful. Both Lilly and Kaileigh have been gaining weight steadily and we had an awesome mid-June CF clinic visit. Kaileigh’s BMI reached a new high of 77th percentile and Lilly was on her heals at the 66th percentile. We looked forward to finishing out the summer and getting Lilly back into school. Then, 3 days later, the dreaded email came. Lilly cultured pseudomonas again. Another 28 days of antibiotic and we’ll be done. Not exactly. After the 28 days passed, her culture still showed pseudomonas. So, on 8/3, she had another PICC line placed and is now repeating the process that we started the year off with. There are 266 days from January 1, 2017 until September 23, 2017, the day of the bike ride. Of those 266 days in 2017 Lilly has been on an antibiotic of some kind for 152 of those days. That doesn’t include the 2 months in 2016 that she was on them either.
As indicated above, Kaileigh has been having a great year. Whenever one girl cultures for pseudomonas and the other one doesn’t, we always get the one who had the negative culture retested a few weeks later. Pseudomonas can transfer from person to person via air and surface, so we always like to be sure that one girl isn’t giving the other girl the “bad bugs”. In January, Lilly’s bugs were unsuccessful in penetrating Kai’s defenses. However, this late summer round ended up getting to Kai as we just found out that Kai now has pseudomonas and will begin phase 1 eradication with an inhaled antibiotic. If that doesn’t kick it, we will skip phase 2, and she’ll go right to phase 3 with a PICC line and IV antibiotics (same path as Lilly).
The girls’ CF doctor is very hopeful that the girls can start the Orkambi drug soon. This new drug will help correct the cause of CF at the cellular level, which will help the lungs function more naturally and get rid of the thick sticky mucus that harbors pseudomonas and other harmful bacteria. As of now, the drug is only approved for patients 6 years and older. It’s very comforting to know that because of scientific advances and funding from the cystic fibrosis foundation (CFF), the girls can start benefiting from it soon.
Cystic Fibrosis is a very complex disease. 60 years ago, we knew very little about it and patients barely lived to see elementary school. The CF gene was discovered (with funding from the CFF) in 1989. Kyle and I were 3 years old in 1989. It absolutely blows my mind on how far science and research has come in less than 30 years. The google machine tells me that right now the average life expectancy for a CF patient is 37 years. I cannot and will not accept that my daughters will die in my lifetime. That is why I raise money for and give money to the Cystic Fibrosis Foundation, the best, most recognized organization in the greatest country on earth that provides funding for a cure for Cystic Fibrosis.
Because of the advancements made on treating this disease by the CFF and its partner organizations the girls have the following:
Digestive enzyme medication to help them grow and be able to fight off infections better.
Gastrostomy tubes (G-tube) to help them achieve their BMI goals.
Air way clearance vests and a daily therapy plan in place.
Inhaled “maintenance” medications to help clear mucus from their lungs.
Inhaled and IV antibiotics to help them eradicate harmful bacteria from their lungs.
A potential “cure” or “symptom lessen-or” that treats the cause of CF.
Items 1 through 5 listed above have become a major part of the girls’ life. Every one of those items is reflected in some form in the girls' daily schedule. At a minimum, we are only 16 months from the 6th item becoming a part of Lilly’s life and to see what that medicine can do for her and her fight to be a normal kid.
If you have any questions, please feel free to contact me. We learn new things about this disease all the time and no question is dumb or stupid. I routinely find myself asking our CF doctor questions I’ve been asked by others (more specifically my mom) that I do not know the answers to.
For information regarding CF, what it is, and what is being done by the foundation, please see the following links: