Many of you have followed our story for many years. You have rejoiced in our highs and cried with us in our lows. You have been our support, our faithful prayer warriors, our comforters, and encouragers. The world of Cystic Fibrosis is hard. It's hard medically, physically, spiritually, and financially, but it's really challenging emotionally. As a parent of a child with a life-threatening illness your job is to ALWAYS put on a smile in front of your child, hide your fears, and hold in your tears. I have learned that the lessons learned behind closed doors, the tears cried in the shower, and the nagging silence while alone in the parking garage have taught me the most life changing experiences. You see, being a parent is hard, you struggle daily knowing that even on your best day, you will never have the power to heal your child, and it's devastating. However, your job is not to add worry and fear to your child but to remind them, as Bob Marley would say, "Don't worry about a thing, 'cause every little thing's gonna be alright." But what happens when those words become reality? How do you express the feelings when you realize that for the first time in 12 1/2 years, you can see the rainbow shining brightly, when the lyrics to Bob Marley's song actually click and make sense. When you fully understand the power behind God's faithfulness and favor.
With a price tag of $311,000.00, courtesy of insurance, a grant and patient assistance, Trikafta arrived on our doorstep on December 20, 2019 at no cost to us. Emma swallowed the two peach pills not knowing what the future would hold for her 182 days later. Today we arrived in Houston for a long line up of appointments. We started with endocrine. We were told when Emma was eight that once she reached the point of puberty she would most likely struggle with Cystic Fibrosis Related Diabetes (CFRD). We have been monitoring her blood sugars for years and have seen some very high high's and some scary lows. But over the past 182 days her body began to balance itself. It began to heal. Today we learned that Emma's blood sugar levels are perfect. Her doctor said they were better than his! The Endo team was extremely pleased with how well she is doing. We will occasionally continue to monitor over the next year, but at this time CFRD is not an issue!!!
We then met with infectious disease and pulmonology. Due to COVID-19, we couldn't check Emma's PFT's (lung function) with out a negative COVID-19 test and we were not given adequate time for her to take a test. Her EKG was abnormal, but we will be monitoring it and it was not a surprise due to her medications. The team decided. after over a year of negative cultures, it was time to stop ALL treatment for Mycobacterium Abscessus. I'm not sure how else to explain this any other way than to shout it from the rooftops... FOR THE FIRST TIME IN FIVE YEARS TODAY EMMA STOPS ALL ANTIBIOTICS!!! Did you read that...did it sink in??!! After five years... 1,571 days... 4 years, 3 months and 18 days... countless pills, and IV's...Emma is antibiotic free!!! They also told me Emma is the first child, her age, to fully complete the Clofazamine trial with complete eradication!!! They will be publishing her data for others to learn from. Emma's journey will be able to help others in the future!! What an amazing gift!
Now I know I've thrown a lot of great information out you...but remember that Bob Marley song..."Don't worry about a thing, 'cause every little things gonna be alright." For the past 18 months, Emma has been gaining and maintaining weight without the use of her g-tube and nighttime feeds. The greatest improvements have been since she began taking Trikafta. In September of 2011, at the age of five, Emma underwent the hardest and most painful surgery to date when she had her gtube inserted. It has been her lifeline for eight years. Emma desperately wants it out. She has worked hard to maintain her weight and today she was given the approval to remove her gtube!!! We are waiting for answers from peds surgery on how long before she can go in the lake before we set a removal date...but the end of an era is on the horizon!! Emma is beyond excited, she doesn't remember life without it. I told her this feels like we are getting rid of a long time friend...she quickly told me it's more like getting rid of a leech!! Hahaha!! Her doctor said that was the best description she had ever heard!!
Several times today we heard things like "Emma is a normal teen girl," "her body has begun to act normal," "she's a typical teen," "it's almost like she doesn't have CF." Hearing "normal" used to describe Emma is indescribable. We are waiting on a lot of lab results, and final results on her EKG but the day was amazing!! The improvements in Emma's life have come at a hefty price… a $311,000.00 price tag. It was overwhelmed to realize that every amazing thing we heard today was because of God's amazing grace, an aggressive team at Texas Children's Hospital and two little peach pills every morning, and one little blue pill every night.
Emma has endured so much in her lifetime. For the longest time it felt like her little body just couldn't get a break, but God has blessed us beyond measure; He has give her a reprieve. We don't know what the future holds, but we know who holds the future and we know we rest securely in the palm of His hands!! So we won't worry about a thing....'cause every little thing's gonna be alright!!!!
