Wednesday, May 8, 2013

Community Faces: Lisa, Chris, and Max

When I speak on behalf of the CFF or at CF education days, I often lead with a story that has become a powerful part of my family's personal folklore: my diagnosis. At 6 weeks old, I was admitted to the hospital with a diagnosis of double pneumonia, spinal meningitis, and failure to thrive because I hadn't yet regained my birth weight. My parents were told that they would need to stick around for a few days while the doctors ran tests to figure out what was wrong with me, and as they settled in a young girl of about 6 pushed an IV pole up to the hospital room door. She introduced herself and asked what my parents what was wrong with their baby, and when they responded that they didn't know yet she added that she had "sixty-five roses." My father later asked the nurse what that meant and looked up the term "cystic fibrosis" in a medical dictionary. When he read the definition he turned to my mother and said simply: "well, Kathleen, at least we can be grateful she doesn't have that." I was diagnosed a few days later, and the doctor explained the prognosis as "just take her home and love her as long as you have her."

I'm so grateful they didn't listen.

Each CF family has a different diagnosis story, and each is super powerful in its own way. Diagnosis with CF -- whether it comes at 6 weeks or 60 years -- is a powerful, life-changing event. And because 70% of CF patients are diagnosed before the age of 3 (a number significantly increased by newborn screening, which is now mandatory in all 50 states), it is most often the parents who feel the brunt of that initial diagnosis moment. I like to think that doctors are no longer telling parents that the best they can do is take their child home and wait for the inevitable, but that doesn't make it easy, and it doesn't make the stories any less an indelible part of each CF family's personal journey.

Today I'm thrilled to feature a Community Faces guest blog by Lisa Sankey and Chris Brungardt about their son Max. As always, CF parents (and their awesome kids) never cease to amaze me. Thanks, Lisa, for sharing your story!

Community Faces: Sounds from the Underground

Names: Lisa, Chris, and Max
Connection to CF: CF Superparents and son, Max
Age: Max is 9 years old with CF
From: N. Dakota
GS Team: Team Max Fargo

We didn’t have a clue that we were carriers of the CF gene.  No family history, nada.  After a normal pregnancy, our son Max was born.  Later that day, he took his first airplane ride when he was life-flighted to Children’s Hospital in Minneapolis for a bowel obstruction due to meconium ileus.  Seems the local pediatric surgeon was on vacation.  We knew nothing about cystic fibrosis other than what we’d seen on an ER episode regarding lung transplants.  Suddenly we were learning about bronchial drainage (bds) or beatments as we called them, nebulizers, enzymes… 

Initially we were worried that he’d always be the sickly child.  In and out of hospitals. Missing school, not have any friends or a normal life…  We got into a routine with treatments, meds.  He started daycare.  We found a place which focused on exercise, outdoor activities year round.  He thrived!  We’ve enrolled him in different sporting programs ---- swimming, skating, tennis lessons, gymnastics, and baseball.  He still hasn’t found his niche, but stays fairly active.

Knock on wood… We’ve been quite fortunate with his health.  A few colds, sinus issues, exacerbations requiring oral antibiotics….  We attribute it to maintaining a consistent regimen – chest physiotherapy via the vest 3 times a day and medications made possible through efforts by the CFF.  And vigilance…  We do realize things can easily change for the worse. He’s had one hospitalization since his original NICU stay which occurred a few years ago and was due to a bowel obstruction cause by adhesions from his surgery as an infant. Today he’s an active, happy 3rd grader.  He’ll be 10 years old in June.  His mutation is Homozygous Delta F508. 

Our Great Strides name is Team Max Fargo.  We also participate in the Fargo Brewers Ball for Cystic Fibrosis, which will be on October 4th.

1 comment:

  1. Cf mum from across the pond here, hav to say thanks for sharing this story. My Peter's diagnosis was in 1997 at 4 months b/c he was so poorly. Thought I would die but doing physio and keeping his lungs fit is part of life now. We mums make it happen LOL! THX Piper and Lisa.