Team Fox in Mourning

Eleven years ago, in 2006, my son, Sean, had a double lung transplant at the tender age of 8, and then a liver transplant at 9-1/2, both due to a rare cancer called Langerhans Cell Histiocytosis. The disease also damaged his pituitary gland and destroyed his thyroid, leaving him with multiple hormone deficiencies. In 2010 and in 2012 the cancer came back, requiring chemotherapy both times.

Despite a 10 year survival rate of only 20% for a double lung transplant, he has been (overall) quite healthy. But on March 3, 2017, we received the news that at 11 years and 5 days after transplant, we learned Sean was rejecting his lungs. (Antibody-mediated rejection.)

He was admitted to the University of Minnesota medical center in Minneapolis the following Monday (March 6) to begin a fairly aggressive course of treatment involving two weeks of plasmapheresis (plasma exchange or "plex") to clear his body of antibodies (good ones included), daily high doses of steroids, rituximab (a chemotherapitic drug to suppress production of new antibodies), and IVIG's (giving antibodies pulled from donor plasma).

Four days into his admission, while getting set up to do Sean's second session of plex, he went into severe respiratory distress and had to be intubated and transferred to the ICU. Within the hour his respiratory status declined even further, putting him into respiratory failure. I was informed the only options were to do nothing or give him some kind of chance by putting him on ECMO (extracorporeal membrane oxygenation) but that doing so was simply a move of desperation, and that he may not even survive the surgery to do it.

Thankfully, he did make it through that step. Sean spent the next couple of weeks on ECMO, with his lungs eventually improving enough to come off, but needing to remain on the ventilator. We were informed he would need another lung transplant, and the first step toward that was agreeing to getting a trach, which he didn't want, but did anyway. The next several weeks were up and down with one infection after another and the antibodies continuing to attack his lungs, until the damage to his lungs had become too great.

On Saturday, May 6, my Histio Warrior became a Histio Angel.

https://www.facebook.com/HistioMom/posts/1895595130682119:0

http://www.chippewavalleycremation.com/obituaries/913-Fox-Sean-Shorty-E

From this point forward, any funds donated here will be split between helping me cover expenses that remain from our stay in Minneapolis (and help with current bills) and Liam's Lighthouse Foundation (in memory of Sean), which raises money for Histiocytosis research.

https://www.crowdrise.com/dashboard/amifox/team-fox3
  • Wendy Darling  
    • $50 
    • 50 mos
  • Darci Moon 
    • $50 
    • 50 mos
  • Lori Roberts 
    • $11 
    • 51 mos
  • Abigail L Andrews 
    • $5 
    • 51 mos
  • Anonymous 
    • $25 
    • 51 mos
See all

Organizer

Ami Fox 
Organizer
Chippewa Falls, WI
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