Updated: Nov 25, 2022
A new season, new adventures, and a new sense of love. It has been a while since our last update, and there is so much to share!
2022 Fundraising Year
How do we even begin to show and share our gratitude for everyone that was part of our 2022 fundraising year. As of today, we have raised over $80,000 for the Cystic Fibrosis Foundation in honor of Marlee's Magic. It has been a humbling year, from fundraisers and events to simple acts of kindness and the extension of so much generosity. Our family and the foundation are forever grateful for the relationships we share and the ability to come together to support our ultimate goal, ensuring CF stands for Cure Found.
Marlee's Big Promotion:
Living her best life, she was moved into the big sister role this summer. Charlee Rose Emore, or ChaCha as Marlee calls her, was born in June 2022. Marlee was a natural fit for the big sister protector role. She ensures that ChaCha has everything she needs. During our pregnancy, we decided not to do invasive screening tests to confirm whether Charlee would share the CF diagnosis with her sister. Instead, we worked closely with our Pediatrician and our Children's Hospital care team to expedite Charlee's newborn screening. We wanted to ensure proper treatment and care were started immediately if she also had CF. About a week after Charlee was born, our CF Care Team contacted us and shared that Charlee is a carrier of one CF Gene but does not have CF. Those with CF have inherited two copies of the defective CF gene — one copy from each parent.
Stepping Into Preschool:
As a parent, some of the most challenging moments experienced are those days in which you begin that next chapter. A chapter that your kids are ready for, but your parent hearts are not. For us, this next chapter was preschool. Marlee has been home since birth and was safe; home was a controlled environment. I could ensure she was receiving her meds, her toys were clean, and I could react to the different cough noises she made. Her care was in my control. But Marlee was ready for more; she was ready for school. She was ready to wear her backpack and walk through those big school doors with her big sister. So as much as it broke our hearts, our little girl was ready for her next adventure. We knew she would flourish, as most kiddos do, but we were nervous about her health and care, which I had to place in the control of someone I did not know. So a lot of pre-planning was done with the school.
An Individual Education Plan (IEP) plan was created and implemented for Marlee. This plan provides an outline for the school to ensure her medications are administered correctly and proper actions are taken in certain situations. It ensures our daughter can flourish and her health remains a top priority. So here we are, three months into our new adventure, and I am happy to share all is going fabulously! We watch the excitement on Marlee's face as she lays out her clothes for school the night before. She does not fight us when we get her up an hour early to complete her treatment for the morning; she goes with the flow because she knows the fun her day will bring. Of course, her health and care will always be our priority, but her adventures in preschool have been a good reminder that she needs to live her best life as our little girl. So as hard as it was and continues to be daily, our little girl is happy and thriving.
CF Care Updates:
Marlee was born with a dermoid cyst over her left eye. It currently does not pose a danger to Marlee, but her doctors want it removed as they do not want to risk its possible rupture. So we will head to Children's Hospital in late December, and Marlee will be placed under general anesthesia to remove the cyst. During this same time, her CF Care team will coordinate and complete a CT Scan along with a Bronchoscopy. The CT scan will be done to image her lungs and allow her doctors to see if there is any additional mucus buildup. The Bronchoscopy will be done to collect sample tissue from her lungs and check for any bacteria growth. Both are vital to her continued CF care, but that does not ease our fears as parents.
Marlee is still taking Orkambi and is thriving. She is not what we would call an adventurous eater and prefers her main food groups; chips, cheese, and grandma's cookies. Weight gain is a struggle for those with CF, but thanks in part to the Orkambi, she has moved from the 13 percentile in weight to the 50 percentile. During her first year on Orkambi, blood draws were a must to ensure her liver function did not decline. We are happy to report that her levels have remained within range and the blood draws are no longer required. Marlee had started to dread her visits to Children as a needle poke was part of the process. So it was a blessing to be able to walk in and walk right past the lab and the terrifying blood draws. She quickly turned into a happy dancing chatterbox and proceeded to show her care team all her new dance moves. While Orkambi has been a game changer, we look forward to the day when Marlee can begin Trikafta, which has been referred to as a life-changing drug for those with CF. While timelines continue to change, we are hopeful that Trikafta will replace Orkambi in Marlee's daily regimen by early 2023.