“This place is not about pokes and hurts.  This place is about love”

When Jackson Huse, age 6, spoke those words, he knew a thing or two about “pokes and hurts”.   For more than a year, he and his family had waged an heroic battle with his brain tumor.  After three surgeries, and months on end of treatments and hospitalizations at Children’s Medical Center in Dallas, Cook’s Children’s Hospital in Ft. Worth, the Mayo Clinic in Rochester, MN, M.D. Anderson Cancer Center in Houston and LeBonheur Children’s in Memphis, they were all exhausted. 

In January of 2008 Jackson’s pediatrician told his family what most likely had been obvious to many health care professionals, and even to Jackson and his family, for months:  Jackson was not going to get well.  It was time to stop the pokes and hurts.  It was time to call hospice.

“We could finally breathe,” says Johna Huse, Jackson’s mother. “We unpacked our bags.  We stayed at home, and The Hospice of East Texas came into our lives.”

With the skilled intervention of the hospice team, led by Stacy Smith, RN, Pediatric Hospice Coordinator, Jackson’s pain was finally under control.  “The thing I valued most was their flexibility and willingness to do whatever it took to keep Jackson comfortable,” said Johna.  “ ‘Let’s try this’ or ‘Let’s do that’” they would say, just doing whatever they could.  There was always someone I could call, and I really felt that everyone in the chain, our primary nurse, Susan Cox, and even the on-call staff at night and on the weekends, knew Jackson and understood our situation.  Someone was always there, at the other end of the phone, day and night.  Jackson had a few bad days, but he had some really good ones, and on those good ones he was even able to go to school for a few hours.

During a particularly difficult period, Jackson spent some time at HomePlace, Hospice of East Texas’ in-patient facility, and he was “the center of the universe there”, reports Johna.  Someone would pull him around in a wagon, staff would stop what they were doing to play with him.  As wonderful as HomePlace was, a haven without pokes or hurts, Jackson’s family wanted him to be at home.  They were determined that he be able to die there, and he did, on March 25, 2008, with his extended family surrounding him.

Since Jackson’s death “every day has been hard,” says Johna.  The death of a child “changes every single thing and every single relationship.”  She has found comfort in a number of things, all of them involving giving. 

“Jackson was a healthy boy.” says Johna.  “He just had a brain tumor.”  A source of great comfort and pride to his family is that after his death, Jackson was able to be an organ donor, giving his cornea, skin and heart valves to those who needed them. 

Johna now serves as a parent representative on the Texas Pediatric Palliative Care Consortium, giving a parent’s perspective to this state-wide coalition focusing on the care of children facing a life-threatening condition.  Her personal experience and her background in education (Johna holds a Masters degree in Educational Leadership and is working on her doctorate) make her a perfect fit for this important position.

In addition, Jackson’s extended family has established two funds at The East Texas Communities Foundation in Jackson’s memory:  The Jackson Huse Scholarship Fund will offer college scholarships to bereaved siblings, and the Hospice of East Texas Crisis Care Fund will provide resources to Hospice for the “extras” many pediatric hospice families need.