Portraits of Life, Love & Legacy Through Pediatric Palliative Care

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♪ ♪ ♪ ♪ IN THIS FILM, THE STORY OF PEDIATRIC PALLIATIVE CARE WILL BE TOLD BY SEVEN FAMILIES: THE BISHOPS, THE BEATTYS, THE PEREZES, THE WISNIEWSKIS, THE RABERS, THE HICKMANS, AND HOPFES. THESE FAMILIES REPRESENT SOME OF THE DIVERSITY OF PALLIATIVE CARE. CHILDREN OF DIFFERENT AGES, DIFFERENT DIAGNOSES AND CIRCUMSTANCES. THEY OPEN THEIR HEARTS TO SHARE THEIR REALITIES OF THEIR LIVES, THEIR STRUGGLES, AND THEIR JOYS. PERSPECTIVES ARE ALSO SHARED BY TEAM MEMBERS OF THE HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER AT AKRON CHILDREN'S HOSPITAL. CAREGIVERS OF MANY DIFFERENT DISCIPLINES DISCUSS THEIR RELATIONSHIPS WITH THE SEVEN FAMILIES AND THE ROLES THEY PLAY IN THEIR CARE. IF YOU HAD TO DISTILL IT INTO ONE SENTENCE, PEDIATRIC PALLIATIVE CARE IS REALLY ABOUT AMELIORATING SUFFERING. THEY'RE LIKE A WARM BLANKET AROUND YOUR BABY. NO MATTER WHAT YOUR BABY IS GOING THROUGH, THEY ARE, THEY ARE THERE SURROUNDING THAT CHILD AND EVERY CHILD IS TREATED LIKE AN INDIVIDUAL. WE SEE CHILDREN WHO HAVE A LOT OF NEEDS IN THEIR LIFE THAT OTHER CHILDREN AREN'T GOING TO HAVE, SO TO PALLIATE FOR THEM MEANS SOMETHING DIFFERENT FOR EVERY CHILD. IT'S TO EASE THE BURDENS, AND THAT'S WHAT WE'RE THERE FOR. WE'RE NOT ONLY THERE TO EASE THE MEDICAL BURDENS; WE'RE THERE TO EASE THE SOCIAL BURDENS, THE FINANCIAL BURDENS, THE EMOTIONAL AND SPIRITUAL BURDENS. WE FREQUENTLY LIKEN WHAT WE DO TO A PALETTE OF CARE. (Sarah Friebert, MD) A PALETTE, AN ARTIST'S PALETTE WITH ALL OF ITS DIFFERENT COLORS ON IT REALLY REPRESENTS ALL OF THE DIFFERENT FACETS OR DISCIPLINES OR SUBSPECIALTIES THAT WE BRING TOGETHER TO THE CARE OF A CHILD WITH A LIFE-THREATENING CONDITION. EVERY FAMILY USES DIFFERENT PARTS OF OUR TEAM DIFFERENTLY, AND THEY MAKE THEIR OWN PICTURE. SO THEY MIGHT USE A LOT OF THE MEDICAL PIECE AND MAYBE JUST A LITTLE BIT OF THE SPIRITUAL PIECE. OR THEY MAY USE A LOT OF THE SOCIAL WORKER PIECE AND THE PSYCHOSOCIAL TEAM AND JUST A LITTLE BIT OF THE MEDICAL TEAM. AND SO EACH PICTURE IS DIFFERENT AND THAT'S, WE'RE ALL HERE FOR THEM ON A TRAY AND THEY GET TO PICK WHAT THEY WANT. PEDIATRIC PALLIATIVE CARE BEGINS AT THE TIME OF INITIAL DIAGNOSIS OF A LIFE-THREATENING OR SERIOUS ILLNESS, AND CONTINUES THROUGHOUT THE JOURNEY TO CURE OR TO DEATH AND BEREAVEMENT, IF THAT OCCURS. PALLIATIVE CARE INVOLVES BOTH COMFORT-ORIENTED AND CARE-DIRECTED THERAPY, IN WHICH PROVIDERS PARTNER WITH FAMILIES TO HELP THEM NAVIGATE A COMPLEX HEALTH CARE SYSTEM, AND MAKE THE BEST POSSIBLE DECISIONS ABOUT THEIR CHILDREN'S CARE. PALLIATIVE CARE IS MY GO TO TEAM. YOU KNOW, YOU'RE NOT JUST A NUMBER; YOU MEAN SOMETHING TO THEM. THEY'RE CARING FOR OUR CHILD AND FOR US AND HELPING US LIVE LIFE EVERY DAY THE BEST THAT WE CAN. JUST WHEN YOU THINK THAT THEY'VE DONE EVERYTHING THAT THEY COULD DO AND THAT THEY HAVE SERVICED YOU IN EVERY WAY, THEY GO ABOVE AND BEYOND AND DO SOMETHING THAT YOU JUST CAN'T BELIEVE. PALLIATIVE CARE IS A DISCIPLINE, IT'S A MEDICAL SPECIALTY. IT IS BOARD CERTIFIED. NURSING HAS SPECIAL CERTIFICATIONS, DOCS HAVE SPECIAL TESTS THEY HAVE TO TAKE AND NOW HAVE TO HAVE FELLOWSHIPS, SO IT IS AS A SUBSPECIALTY AS PULMONARY. BUT WHAT WE DO IS SO INTIMATE THAT FAMILIES HAVE TO LET US INTO PIECES AND PARTS OF THEIR LIVES THAT NOBODY BUT OTHER FAMILY MEMBERS GET TO SEE, AND THAT SACRED RELATIONSHIP AND AGREEMENT THAT WE MAKE WITH THIS FAMILY THAT WE ARE GOING TO BE YOUR PALLIATIVE CARE PROFESSIONAL AND WALK THIS JOURNEY WITH YOU IS UNIQUE IN MEDICINE. MORGAN BISHOP WAS BORN INTO A LOVING FAMILY. HER FATHER KENAN, HER MOTHER DENICA AND HER BIG SISTER SKYLAR DIDN'T SUSPECT ANYTHING WAS WRONG WHEN MORGAN WAS BORN A CALM, PEACEFUL BABY. GENETIC AND NEUROMUSCULAR TESTING BROUGHT BACK A DIAGNOSIS OF SPINAL MUSCULAR ATROPHY TYPE I, A FATAL ILLNESS. CHILDREN WITH SMA TYPE I HAVE GENERALIZED MUSCLE WEAKNESS. MOST IMPORTANTLY, THEY HAVE TROUBLE EATING AND BREATHING ON THEIR OWN. AFTER MISTAKENLY RECEIVING NORMAL TEST RESULTS AND BREATHING A GREAT SIGH OF RELIEF, HER FAMILY WAS DEVASTATED TO LEARN THAT INDEED MORGAN HAD SMA TYPE I, WOULD NEVER WALK OR TALK, AND MIGHT NOT EVEN LIVE 'TIL HER SECOND BIRTHDAY. PALLIATIVE CARE WAS CONSULTED DURING THE HOSPITAL VISIT IN WHICH SHE WAS DIAGNOSED TO PROVIDE SUPPORT TO THE FAMILY IN THE WAKE OF THE DIAGNOSIS AND TO ASSIST THE FAMILY AS THEY BEGAN THEIR JOURNEY THROUGH THE HEALTHCARE SYSTEM. MY WORLD WAS SHATTERED. AND SO... I'M IN A HOSPITAL ROOM, AND, I'M JUST SO ANGRY, AND JUST CRYING AND YELLING AND SCREAMING, HOW COULD THIS HAPPEN? AND AT THAT POINT I DIDN'T WANT TO HEAR FROM ANYBODY. I WAS DONE, I WAS DONE WITH THE HOSPITAL, I WAS DONE WITH EVERYBODY. IT WAS JUST, YOU DON'T KNOW WHAT YOU'RE DOING. I THINK THAT IT'S VERY DIFFICULT FOR THAT FIRST DOCTOR OR FIRST NURSE WHO HAS TO TELL A FAMILY A DIAGNOSIS. WE HAVE TO FIRST OF ALL JUST RECOGNIZE THAT, SO IF YOU'RE THE FIRST PERSON, IT'S LIKE, OKAY, WHAT AM I GOING TO SAY? I'M GOING TO BE CAREFUL ABOUT WHAT I SAY AND A LOT OF TIMES IT'S GOING TO BE JUST A BEGINNING PART OF THE STORY. THE COMMUNICATION ON MY PART WAS CLOSED. I WASN'T REALLY TRYING TO TALK WITH ANYONE, AND THE NICEST WOMAN CAME INTO OUR ROOM, AND THIS WAS DR. FRIEBERT. I THINK SOMETIMES WE HAVE THE OPPORTUNITY TO MEET FAMILIES WHEN THEY ARE IN THE THROES OF THEIR WORST NIGHTMARE, AND OFTENTIMES THAT'S ACCOMPANIED BY ANGER FOR VARIOUS REASONS, AND ONE OF THE THINGS THAT WE REALLY STRIVE TO DO IS TO BE PRESENT WITH FAMILIES AND FOR THEM TO FEEL SAFE TO FEEL THAT AND EXPRESS IT WITHOUT JUDGMENT. AND I SAID, PALLIATIVE CARE? WHAT IS THIS, BABY HOSPICE? AND YOU KNOW, WHEN YOU THINK HOSPICE, YOU THINK MORPHINE DEATH. PEOPLE MESH HOSPICE AND PALLIATIVE CARE AND DON'T SEE THAT DIVISION BETWEEN HOSPICE CARE, WHICH IS INCREDIBLY IMPORTANT, AND NOT HOSPICE PALLIATIVE CARE. SO I THINK THAT'S REALLY THE NUMBER ONE MYTH THAT WE FACE IS THAT WHEN YOU HEAR THE WORD PALLIATIVE IT'S A SECRET CODE WORD FOR HOSPICE, WHICH IS A SECRET CODE WORD FOR LOSS OF HOPE, GIVING UP, ABANDONING - ALL THOSE SORTS OF NEGATIVE THINGS. AND DR. FRIEBERT AND HER TEAM, THEY WERE ABLE TO SKILLFULLY, MASTERFULLY... YEP. WORK AROUND OUR ATTITUDES AND OUR PRECONCEIVED NOTIONS TO BECOME THE BEST, BEST FRIENDS, BEST ADVOCATES THAT WE COULD HAVE EVER ASKED FOR. TYLER BEATTY HAD A NORMAL BIRTH AND LIVED THE LIFE OF A TYPICAL CHILD WITH HIS FATHER CHRIS AND HIS MOTHER CARA FOR HIS FIRST THREE YEARS, UNTIL THEY LEARNED HE HAD A TUMOR IN HIS HEAD THE SIZE OF A SOFTBALL. HE WOULD HAVE DIED WITHOUT SURGERY, BUT DUE TO THE TUMOR SIZE AND LOCATION IN THE BRAIN, TYLER WOULD NEVER BE THE SAME. DAMAGE TO THE BRAIN WAS INEVITABLE, AND THERE WOULD BE NUMEROUS SIDE EFFECTS FROM THE SURGERY, PRIMARILY ARISING FROM DAMAGE TO THE HYPOTHALAMUS, THE PART OF THE BRAIN THAT CONTROLS BODY TEMPERATURE, HUNGER, THIRST, FATIGUE, AND SLEEP CYCLES. PALLIATIVE CARE WAS CONSULTED SOON AFTER SURGERY TO PROVIDE SUPPORT, ASSIST WITH PAIN AND SYMPTOM MANAGEMENT, AND TO COORDINATE HIS CARE. WE CAME IN THE HOSPITAL WITH OUR THREE-AND-A-HALF-YEAR-OLD NORMAL, TYPICAL CHILD, AND WE'RE LEAVING THE HOSPITAL INTO THIS WORLD OF COMPLETELY UNKNOWN THAT, WE WERE SO LOST AS PARENTS, BUT JUST AS, WE WERE SO OVERWHELMED WE DIDN'T KNOW WHAT THE FUTURE WAS GOING TO BRING, AS HE COULDN'T EVEN HOLD HIS HEAD UP. AND SO HERE YOU HAVE YOUR THREE-AND-A-HALF-YEAR-OLD CHILD WHO WAS RUNNING AND LAUGHING AND PLAYING AND NOW SIX MONTHS LATER ALMOST LIKE A BABY AGAIN. WHEN TYLER WAS FIRST DIAGNOSED I WAS JUST VERY NUMB. I THINK EVERYBODY WAS IN A LITTLE BIT OF DENIAL ABOUT, OH, HE'S GOING TO BE FINE. THEY'LL GET THE TUMOR, HE'LL BE FINE. AND NOT REALIZING THAT IT'S JUST A COMPLETELY DIFFERENT EXPERIENCE AFTER THAT DAY, AND YOU HAVE, LIKE IN MY MIND, WE HAVE JUNE 21ST AND THEN JUNE 22ND OF '04. IT IS A GRIEVING PROCESS BECAUSE WHEN YOU HAVE SOMETHING THAT CATASTROPHIC HAPPEN TO YOU, YOU GRIEVE FOR THE CHILD AND THE THINGS THAT WILL NEVER HAPPEN. I KNOW FOR ME THAT'S, AS A MOM, I THINK THAT'S WHAT'S BEEN SO HARD IS KNOWING TYLER WON'T GO TO COLLEGE, AND HE WON'T GET MARRIED, AND HE WON'T HAVE KIDS, AND DEALING WITH THAT IS HARD, BUT THEY HELP. YOU KNOW, HAVING DR. GERAK ON THE TEAM HAS HELPED IMMENSELY TO JUST BE ABLE TO WALK THROUGH THIS AND TALK THROUGH IT, AND SOMETIMES JUST TO HAVE A SAFE PLACE TO GO AND SAY, THIS JUST REALLY SUCKS AND I HATE IT. I FIND WITH A LOT OF FAMILIES, YOU KNOW, BUT CARA'S FAMILY IS INDICATIVE OF, THEY CAN BE IN SUSPENDED ANIMATION FOR A LONG TIME. YOU KNOW, SOMETIMES IT'S A SHORT TIME, COUPLE DAYS, OR COUPLE WEEKS DURING THE MIDDLE OF THE TRAUMA, OR AS THE CHILDREN ARE HEALING, AND SOMETIMES FOR YEARS, AND I THINK IT'S VERY HARD FOR FAMILIES AND PATIENTS TO LIVE IN THE PRESENT, AND LIVE LIFE FULLY WHILE MAKING SENSE OUT OF THE PAST AND KNOWING THAT THE FUTURE MAY OR MAY NOT BE GUARANTEED. (Cara) THEY ALWAYS ASK, LIKE, WHEN WE SEE DR. FRIEBERT OR DR. CATHY, HOW ARE YOU, TYLER? AND HOW ARE YOU GUYS? AND ARE YOU THINKING ABOUT GOING ON VACATION AS A FAMILY THIS SUMMER? AND THERE ISN'T A TIME THAT DOESN'T GO BY WHERE THEY DON'T LOOK AT US AS A WHOLE AND MAKE SURE THAT EACH ONE OF US IS OKAY, NOT JUST TYLER, BECAUSE THEY SEE US AS A THREE...PUZZLE ALMOST, LIKE THERE'S TYLER, CHRIS AND CARA, AND IN ORDER TO MAKE EVERYBODY OKAY, WE ALL HAVE TO BE OKAY. IT'S ABOUT FAMILY-CENTERED CARE. IT'S NOT JUST ABOUT THE PATIENT AND THE PARENT, IT'S ABOUT THE SIBLINGS, IT'S ABOUT THE GRANDPARENTS, IT'S ABOUT THE AUNTS AND UNCLES, IT'S ABOUT THE COMMUNITY THAT THE CHILD LIVES IN, SO WHEN I SAY FAMILY-CENTERED I MEAN THE ENTIRE FAMILY, INCLUDING THE PETS. THERE'S A FINE BALANCE BETWEEN RECOGNIZING THAT PARENTS ARE THEIR CHILDREN'S BEST ADVOCATES AND KNOW THEIR CHILDREN BEST AND PUTTING TOO MUCH RESPONSIBILITY ON THEM THEREFORE, TO MAKE DECISIONS. SO SOMEWHERE IN THE MIDDLE IS PARTNERSHIP. KATHARINE PEREZ WAS WELCOMED INTO THE WORLD BY HER MOTHER VIANETT, HER FATHER SALVADOR, AND HER BIG BROTHERS CARLOS AND ANTHONY. KATHARINE WAS BORN WITH A BRAIN MALFORMATION RESULTING IN A SEVERE SEIZURE DISORDER. SHE IS DEVELOPMENTALLY DELAYED AND HAS SERIOUS MEDICAL PROBLEMS. BECAUSE SHE CANNOT EAT ORALLY, SHE HAS A FEEDING TUBE. DUE TO HER CHRONIC RESPIRATORY FAILURE, SHE HAS A TRACHEOSTOMY AND A HOME VENTILATOR. IN SPITE OF ALL THESE SPECIAL NEEDS, HER FAMILY IS NOW, AND HAS ALWAYS BEEN, COMMITTED TO CARING FOR HER AT HOME. PALLIATIVE CARE WAS CONSULTED SOON AFTER KATHARINE'S BIRTH WHEN IT WAS DETERMINED KATHERINE'S BRAIN DISORDER AND SEIZURES WOULD BE DIFFICULT TO MANAGE. THEY WERE CONSULTED TO PROVIDE SUPPORT, BUT WERE ALSO ASKED TO HELP DETERMINE THE FAMILY'S HOPES AND GOALS FOR KATHARINE, AND TO PREPARE THEM FOR DIFFICULT DECISIONS THAT WERE FORTHCOMING. THEY SPOKE SOME ENGLISH BUT WE REALLY HAD A CONCERN ABOUT THE LANGUAGE BARRIER BEING A HINDRANCE TO FULL UNDERSTANDING, SO THERE WERE SEVERAL MEETINGS WITH AN INTERPRETER JUST TO MAKE SURE THAT THEY REALLY UNDERSTOOD WELL WHERE THINGS WERE WITH HER CONDITION AND WHAT DID THAT MEAN IN THE BIGGER PICTURE AND LONGER-TERM FOR HER QUALITY OF LIFE. [speaking Spanish] (Marlene Hardy-Gomez) IT WAS SO CLEAR TO ME WHEN I HEARD FROM THEM THAT WHATEVER THEY NEEDED TO DO TO CARE FOR THEIR DAUGHTER IT WAS VERY MUCH THAT'S WHAT THEY WERE GOING TO DO NO MATTER HOW HARD IT WAS AND SO FROM THERE ON IT WAS, OKAY, WHAT DO WE NEED TO DO TO HELP AND SUPPORT THEM THE BEST WAY THAT WE CAN AND MAKE THAT HAPPEN? BECAUSE THAT WAS THE RIGHT DECISION FOR THEM. KASSIE RABER IS AN ELEVEN-YEAR-OLD GIRL WHO LIVES AT HOME WITH HER MOTHER TINA AND HER TWO BROTHERS DYLAN AND JASON. KASSIE WAS DIAGNOSED AT BIRTH WITH CONGENITAL CYTOMEGALOVIRUS. IN OTHER WORDS SHE HAD BEEN INFECTED WITH THIS VIRUS PRIOR TO HER BIRTH. AS A RESULT SHE HAS CEREBRAL PALSY, INTELLECTUAL DISABILITY AND HYDROCEPHALUS (THAT'S INCREASED FLUID IN HER BRAIN). THE PALLIATIVE CARE TEAM MET KASSIE WHEN SHE WAS THREE YEARS OLD, AFTER MULTIPLE ADMISSIONS FOR PNEUMONIA AND A PROLONGED STAY IN THE INTENSIVE CARE UNIT. AT THAT TIME HER FAMILY FELT STRONGLY THAT THEY DID NOT WANT HER TO HAVE A TRACHEOSTOMY OR A VENTILATOR. BUT WHEN KASSIE'S CHRONIC RESPIRATORY FAILURE BECAME INCREASINGLY LIFE-THREATENING HER FAMILY CHANGED THEIR MINDS AND OPTED FOR THE TRACHEOTOMY AND VENTILATOR. KASSIE HAS A LOT OF PERSONALITY ONCE YOU GET TO KNOW HER. SHE'S NOT EASY TO UNDERSTAND IF YOU'RE A STRANGER COMING OFF THE STREET, BUT SHE IS ORNERY ONCE YOU GET TO KNOW HER. SHE IS A SPOILED LITTLE PRINCESS. WE HAVE TWENTY HOURS OF NURSING IN OUR HOUSE A DAY AND WE HAVE NO PRIVATE LIFE BUT THAT'S JUST HOW IT IS. A TYPICAL DAY OF CARING FOR KASSIE, SHE HAS A LOT OF TREATMENTS. SHE GETS VEST THERAPY, SHE GETS A LOT OF MEDS. BASICALLY EVERY TWO HOURS THERE'S A MEDICINE TO BE GIVEN TO HER. SHE GETS SUCTIONED A LOT THROUGH HER TRACH. SHE GETS TWO PAINS EVERY FOUR HOURS. SHE'S A VERY BUSY LITTLE GIRL. KASSIE IS NOT HOUSEBOUND. IF WE WANT TO TAKE A FAMILY OUTING, WE TAKE CASSIE WITH US. KASSIE IS VERY MUCH A PART OF OUR FAMILY. WE TAKE HER EVERYWHERE WITH US. IF WE GO TO THE ZOO KASSIE GOES TO THE ZOO. WE WENT TO MYRTLE BEACH. KASSIE WENT TO MYRTLE BEACH WITH US, AND WE DIDN'T TAKE A NURSE. KASSIE WENT WITH US. IT'S JUST OUR FAMILY. THE BAGGAGE THAT COMES WITH KASSIE, USUALLY WE END UP WITH ABOUT TWO OR THREE DIAPER BAGS, A VENTILATOR, A SUCTION MACHINE. IF IT'S A DAY OUTING, THAT'S OUR DAY OUTING. IF WE'RE TAKING VACATION, WE END UP RENTING A U-HAUL. SHE'S A BIG PART OF OUR FAMILY AND I THINK IF ANYTHING EVER HAPPENED TO HER THERE'D BE A LOT MISSING. ADDISON WISNIEWSKI IS AN ELEVEN-YEAR-OLD GIRL WITH A SPARKLING SMILE AND PERSONALITY TO MATCH. SHE LIVES AT HOME WITH HER MOTHER ANDREA, HER FATHER JOHN, AND HER EIGHT-YEAR-OLD SISTER HARPER. SHE WAS BORN WITH A GENETIC BONE DISORDER CALLED OSTEOGENESIS IMPERFECTA TYPE IV, OR OI, WHICH IS SOMETIMES REFERRED TO AS BRITTLE BONE DISEASE. OI TYPICALLY RESULTS IN BONES FRACTURING EASILY, BONE DEFORMITY, SHORT STATURE, AND THE POSSIBILITY OF EARLY HEARING LOSS. ALTHOUGH ADDISON WAS DIAGNOSED AT AN EARLY AGE, THE PALLIATIVE CARE TEAM FIRST MET THE FAMILY WHEN ADDISON WAS NINE YEARS OLD TO HELP WITH PAIN MANAGEMENT AS A RESULT OF HER MULTIPLE FRACTURES. EVERY DAY OF MY LIFE I HAVE A LOT OF PAIN AND I KIND OF JUST HAVE TO DEAL WITH IT BECAUSE REALLY, LIKE, I HAVE TO GO ON AND HAVE A GREAT DAY. I BREAK REALLY EASILY, SO IF I GET A LITTLE COUGH I CAN BREAK MY RIBS. IF I SNEEZE TOO HARD I'LL BREAK MY RIBS. SO IF I HAVE A BROKEN BONE IT'S HARD A LOT OF TIMES BECAUSE I'M IN A LOT OF PAIN. SOMETIMES IF WE'RE PLAYING SOMETHING, OR WE'RE DOING SOMETHING TOGETHER AND SHE'S LIKE, HER BONES, LIKE HER, OR SHE'S NOT FEELING WELL, SHE HAS TO GO IN AND THAT JUST KIND OF MAKES IT HARDER. THE THING WITH ADDIE IS THAT THERE'S, ANY MOMENT ANYTHING CAN CHANGE AT ANY GIVEN MOMENT. THE DAY COULD BE GOING REALLY WELL AND THEN ALL OF A SUDDEN ONE LITTLE WRONG MOVEMENT AND SHE HAS A FRACTURE. I'VE BROKEN PROBABLY OVER A HUNDRED BONES AND UHM, I'VE BROKEN MY FEMURS, I BREAK RIBS A LOT. I'VE BROKEN ARMS, ANKLES, FEET- - PRETTY MUCH ANYTHING YOU CAN THINK OF, I'VE BROKEN. MY MOM'S FRIEND SUGGESTED PALLIATIVE CARE BECAUSE SHE THOUGHT THAT THEY COULD REALLY HELP ME WITH MY EVERYDAY BONE PAIN. AND WHEN I FIRST MET PALLIATIVE CARE, I TALKED TO DR. HIRSH, AND THEY'VE BEEN HELPING ME WITH MY PAIN EVER SINCE THEN. RECENTLY ADDIE'S BEEN DEALING WITH A LOT OF PAIN, MORE THAN HER NORMAL, SO THEY ASSISTED US WITH SOME MEDICATIONS THAT ARE REALLY HELPING HER LIVE A MORE NORMAL LIFE. THIS IS THE BEST SHE'S FELT IN YEARS. WE'RE ALL JUST REALLY THRILLED, HUH, ADD? BECAUSE SHE'S BEEN REALLY, REALLY NOT FEELING GOOD. COULDN'T EVEN GO TO SCHOOL, AND SO THE LAST COUPLE OF... YOU'RE NOT SUPPOSED TO CRY. I'M SORRY. (Sarah Friebert, MD) PAIN AND SYMPTOM MANAGEMENT ARE CORE TO PEDIATRIC PALLIATIVE CARE AND PALLIATIVE CARE IN GENERAL. IF YOU HAVE A CHILD WHO'S IN PAIN OR SUFFERING FROM ANOTHER SYMPTOM, ALL THE OTHER DIMENSIONS OF CARE ARE SECONDARY TO THAT. WHAT DOES SHE DO TO, LIKE, EXHIBIT PAIN? HOW DOES SHE SHOW YOU SHE'S IN PAIN? SHE JUST, I MEAN, SHE'LL CRY. SHE'LL START BITING HERSELF. SHE SEEMS AGITATED. SHE'S HAD SOME INCREASED PAIN. I USED EXTRA MORPHINE. DID USE THE INHALED MORPHINE, TOO, TO KIND OF RELAX HER AIRWAY? YEAH. IT'S ABOUT IMPECCABLE ASSESSMENT AND MANAGEMENT OF SYMPTOMS SO THAT PAIN AND SUFFERING IS TREATED IN THE MOST UP-TO-DATE, EVIDENCE-BASED WAY THAT WE HAVE AVAILABLE. I MEAN, DEFINITELY WE'RE A PHONE CALL OR A VISIT AWAY. SO WE, YOU KNOW, IF YOU CALL US, WE CAN TELL YOU WHAT TO DO TO MANAGE HER SYMPTOMS, AND TALK YOU THROUGH IT ON THE PHONE, AND COME OUT IF WE NEED TO. ANYTHING ELSE, PAIN MANAGEMENT WISE, THAT WE DIDN'T TALK ABOUT THAT COULD BE IMPORTANT FOR FAMILIES TO KNOW? IF YOU HAVE A CHILD THAT'S REALLY SICK, THE BEST THING IS TO DO THE PAIN MANAGEMENT, AND ALLOW FOR THE MEDICATIONS BECAUSE THE KIDS GO THROUGH ENOUGH. MORE THAN LIKELY, IF THEIR LIVES ARE GOING TO BE SHORT, THEY NEED THAT MEDICATION TO HELP THEM ENJOY THEMSELVES, AND ENJOY THEIR FAMILIES, INSTEAD OF CONSTANTLY BEING, HURTING, SO I THINK IT'S IMPORTANT. [Vianett Perez speaking Spanish] WHEN A CHILD IS BORN INTO A FAMILY WITH A DISABILITY OR CHRONIC OR COMPLEX ILLNESS, IT DOESN'T JUST HAPPEN TO THE CHILD, AND IT DOESN'T JUST HAPPEN TO THE PARENTS - IT ALSO HAPPENS TO THE SIBLINGS, WHICH WE OFTEN CALL THE INVISIBLE CHILD. AND THEY KIND OF GET LOST IN THE SHUFFLE. MY ROLE IS TO TRADITIONALLY SUPPORT THE SIBLINGS, TO PREPARE THEM FOR WHAT'S TO COME IN THE FUTURE OF THEIR SIBLING'S CHRONIC ILLNESS. I WORRY THAT MY MOM AND DAD ARE SAD. SOMETIMES I EVEN WORRY THAT MOLLY WILL NEVER COME HOME. DO YOU EVER THINK THAT WHEN KASSIE GOES TO THE HOSPITAL, THAT SOMETIMES SHE MIGHT NOT COME BACK HOME? YEAH. YEAH. SO HOW ELSE IS KASSIE DIFFERENT FROM JASON AND DYLAN? WHEN SHE IS SEVENTY YEARS OLD. WHEN SHE IS SEVENTY YEARS OLD, WHAT'S GOING TO HAPPEN WHEN SHE'S SEVENTY YEARS OLD? SHE WILL JUST STAY LIKE A GIRL. YOU THINK SHE'S GOING TO ALWAYS STAY LIKE A GIRL? YEAH. [Vianett Perez speaking Spanish] I THINK THAT'S ALSO A PART OF MY ROLE IS HELPING THEM FIND A NEW NORMAL. FIRST YOU HAVE TO ADDRESS WHAT WAS LOST. I DON'T LIKE THE FACT THAT MOM AND DAD AREN'T RIGHT AT MY BECK AND CALL LIKE THEY USED TO BE. I DON'T LIKE THE FACT THAT NOW WE HAVE TO SPEND SO MUCH TIME AWAY GOING TO HOSPITALS AND DOCTOR VISITS, BUT FINDING A NEW NORMAL FOR THE SIBLINGS WOULD BE SOMETHING AS SIMPLE AS FINDING ACTIVITIES FOR THEM TO DO, WAYS THAT THEY CAN HELP FEEL A PART OF THAT CIRCUMSTANCE, FEEL A PART OF THEIR SIBLING'S CARE. SHOW KASSIE. SHOW HER IN HER WHEELCHAIR. THERE YOU GO. SEE? LOOK, YOU'RE HERE. I THINK SHE LIKES IT. SHE'S SMILING. YEP. OH, GOOD JOB. THE BOYS ARE PRETTY GOOD. THE BOYS UNDERSTAND. THEY'LL COME UP AND CUDDLE NEXT TO HER IN BED AT NIGHT IN HER ROOM. THEY LOVE THEIR SISTER. SINCE TYLER'S ORIGINAL DIAGNOSIS AND BRAIN SURGERY, HE HAS BEEN ADMITTED TO THE HOSPITAL DOZENS OF TIMES RELATED TO HIS BRAIN TUMOR AND A COMPLEX WEB OF INTERRELATED COMPLICATIONS. (Cara Beatty) WE ARE UNDER PALLIATIVE CARE BECAUSE TYLER IS COMPLEX, AND I THINK THE HARD THING IS, IT'S NOT ALWAYS WHAT IT IS. LIKE, TYLER KIND OF WRITES HIS OWN BOOK AND I THINK THAT THAT'S A LOT OF TIMES HOW CHILDREN OF PALLIATIVE CARE ARE. IT'S NOT BY THE BOOK. THEY'VE WRITTEN THEIR OWN BOOK. HIS PROBLEM LIST WAS PROBABLY A PAGE LONG. HIS MEDICATION LIST WAS TWO PAGES LONG, IF NOT MORE. AND A LOT OF PROVIDERS WERE VERY AFRAID OF TAKING CARE OF HIM. CHILDREN AND FAMILIES ARE BOUNCING AMONG MANY SITES OF CARE. THEIR HOMECARE PROVIDERS ARE COMING TO THEM IN THEIR HOMES, THEY GO TO THEIR PRIMARY CARE PROVIDERS IN THEIR COMMUNITY. THEY GO TO TWELVE, THIRTEEN, TWENTY SUBSPECIALISTS FOR EVERY LITTLE SYMPTOM OR DISEASE ISSUE THEY HAVE. THEY ARE IN AND OUT OF THE HOSPITAL, IN AND OUT OF THE EMERGENCY ROOM, SO THAT'S WHAT FRAGMENTATION IS, IS THAT KIND OF PIECEMEAL CARE THAT OCCURS IN ALL OF THOSE DIFFERENT SITES. WHEN THAT HAPPENS IT BECOMES THE RESPONSIBILITY OF THE FAMILY TO BE THE COHESION, TO BE THE GLUE THAT REMEMBERS EVERYTHING THAT HAS GONE ON WITH THEIR CHILD, THAT CAN COMMUNICATE WHAT HAPPENED FROM THIS VISIT TO THAT VISIT, TO THIS SUBSPECIALIST TO THAT SUBSPECIALIST. SO FAMILIES VERY QUICKLY TURN INTO BEING THEIR CHILD'S FULL-TIME CASE MANAGER. THE PROCEDURE THAT PALLIATIVE CARE DOES IS CONVERSATION AND COMMUNICATION. AND REALLY, THE SYSTEM OF PEDIATRIC PALLIATIVE CARE AND THE MEDICAL HOME MODEL IS DESIGNED TO BRIDGE THOSE TRANSITION POINTS OF ENTRY. IF YOU LOOK AT WHERE A CHILD ENTERS A HEALTHCARE SYSTEM, HOW CAN WE COALESCE THAT INFORMATION? SO IT'S BRIDGING, IT'S COMMUNICATION, AND IT'S DOING THAT IN A WAY THAT THE FAMILY DOESN'T FEEL RESPONSIBLE FOR THE DETAILS. THEY HAVE ENOUGH TO WORRY ABOUT. THEY FIGHT AS HARD AS WE DO AND I JUST REALLY FELT, AS SICK AS HE WAS, THEY NEVER GAVE UP ON TYLER. THEY, THEY SAW WHO HE WAS AND WHO HE COULD BE AND WITH DIGNITY AND RESPECT, THEY FOUGHT FOR HIM JUST AS MUCH AS CHRIS AND I WOULD, AND THEY HELPED US GET TO A POINT WHERE WE ARE TODAY. READY, CATCH IT. GOOD JOB! OOO! (Catherine Kelly-Langen) HE HAS BEEN AMAZING. HE'S BEEN PROGRESSIVELY IMPROVING THROUGH THERAPY. HE'S BEEN BACK AT SCHOOL INTO A REGULAR CLASSROOM. TALKS... GOT YELLED AT AT SCHOOL FOR TALKING TOO MUCH. I SAID THAT TO SOMEONE AND THEY SAID, I DIDN'T EVEN KNOW HE TALKED, YOU KNOW. YES, HE TALKS TOO MUCH APPARENTLY. AND YOU KNOW, GOING TO CHURCH AND STANDING UP IN THE MIDDLE OF CHURCH SAYING, AMEN! (Cara Beatty) I WHOLEHEARTEDLY BELIEVE THAT WITHOUT THEM IN TYLER'S CARE OUR STORY WOULD BE DETRIMENTALLY DIFFERENT. I JUST ALMOST, WHEN I SEE DR. FRIEBERT, I ALWAYS JUST GIVE HER A HUG BECAUSE... SHE LITERALLY SAVED TYLER'S LIFE. HER AND THE WHOLE TEAM. LARRY HICKMAN AND HIS EX-WIFE KARI HAVE THREE DAUGHTERS, KAYLA, KRISTA, AND KENDRA; AND THREE SONS, GRANT, GARRETT, AND KENT. ALL THREE OF THE BOYS WERE DIAGNOSED WITH A RARE DISORDER CALLED SANFILIPPO SYNDROME. AT BIRTH THE CHILD APPEARS NORMAL, AND THEN SLOWLY ACQUIRES DEVELOPMENTAL DISABILITIES. AS THE DISEASE PROGRESSES, THE CHILD DEVELOPS MORE BEHAVIORAL PROBLEMS, INCLUDING HYPERACTIVITY, DESTRUCTIVE AND AGGRESSIVE BEHAVIOR, AND SLEEP DISTURBANCE, PRESENTING SIGNIFICANT CHALLENGES TO CAREGIVERS. IN THE FINAL PHASE OF THE DISEASE, THE CHILD BECOMES INCREASINGLY IMMOBILE AND UNRESPONSIVE, DEVELOPS SEIZURES, AND HAS DIFFICULTY SWALLOWING. THERE IS NO CURE AND CHILDREN WITH SANFILIPPO SYNDROME TYPICALLY DO NOT LIVE BEYOND THEIR TEENAGE YEARS. THE HICKMANS CARED FOR THESE THREE BOYS ON THEIR OWN UNTIL LARRY AND HIS WIFE KARI GOT DIVORCED SEVERAL YEARS AGO. MY WIFE AND I ARE NO LONGER MARRIED. I HOLD NO JUDGMENT ON THAT BECAUSE MY WIFE WAS A WONDERFUL MOTHER, AND WHILE I WORKED AT SCHOOL AS AN ADMINISTRATOR IN EDUCATION, SHE CARED FOR THE FAMILY AT HOME. BUT SHE HAD SEVENTEEN, SIXTEEN YEARS WITH GRANT AT HOME, AND THEN I WOULD COME HOME AT NIGHT AND, I'LL BE HONEST, THE TIME I WAS AT HOME WAS ROUGH, SO I DON'T KNOW HOW SHE DID TWENTY-FOUR HOURS. AND WE LACKED SERVICES, WE LACKED CARE AT THAT TIME, SO SHE WAS DOING MOST OF IT HERSELF. THE PALLIATIVE CARE TEAM BECAME INVOLVED AT A TIME WHEN LARRY WAS STRUGGLING TO HANDLE THE PRESSURES OF WORK AND CARING FOR HIS CHILDREN ON HIS OWN. I WORK A LOT WITH BUILDING A RELATIONSHIP WITH A CHILD AND FAMILY AND ASSESSING WHAT THEY NEED, AND COMING UP KIND OF WITH A PLAN, ESPECIALLY A NEW PATIENT, ON HOW WE CAN HELP. THE PALLIATIVE CARE TEAM AT AKRON CHILDREN'S HOSPITAL WILL DO ALMOST ANYTHING TO MAKE THE LIVES OF A PATIENT AND FAMILY EASIER. IN THE CASE OF THE HICKMAN FAMILY THE TEAM PROVIDED SUBSPECIALTY MEDICAL EXPERTISE, ASSUMED THE ROLE OF CARE COORDINATION, AND HELPED THE HICKMANS GAIN ACCESS TO PHYSICAL THERAPY AND THE APPROPRIATE ADAPTIVE EQUIPMENT FOR THE THREE BOYS. MY PASSION IS TO HELP PEOPLE BREAK THROUGH THE SYSTEM AND BARRIERS AND TO BE ABLE TO LIVE LIFE WITHOUT ALL THESE OTHER CUMBERSOME THINGS THAT YOU DIDN'T SIGN UP FOR. THE TEAM ALSO HELPED THE HICKMANS GAIN ACCESS TO LEGAL SERVICES TO PETITION THE STATE FOR ADDITIONAL NURSING HOURS, WHICH THEY DESPERATELY NEEDED. BETWEEN DENISE AND THE PALLIATIVE CARE TEAM THEY WERE ABLE TO WORK WITH ME TO SAY THE RIGHT THINGS AND WRITE THE RIGHT THINGS IN ORDER TO GET ADDITIONAL STATE SERVICES FOR THE BOYS. AND THAT TOOK THE REALM OF AN APPEAL PROCESS AND WE TESTIFIED IN THE APPEAL PROCESS AS A TEAM, ME AND DR. FRIEBERT, AND EVENTUALLY THE CASE WAS WON. WE'LL GET IN THERE IN THE TRENCHES WITH THE FAMILIES. ♪ I THINK IT WAS JUST THE ASSURANCE OF KNOWING THAT HERSELF OR SOMEONE ELSE WAS ALWAYS JUST A PHONE CALL AWAY. WE'D BE AT THE HOUSE AND HAVE A CONCERN AND WE'D CALL. WE MIGHT NEED TO HAVE HER MEDS CHANGED. THEY'D BE ABLE TO CALL IN A PRESCRIPTION. THEY'D COME OUT AND THEY DO CHECKUPS, AND CHECK INS. ENDLESS PHONE CALLS TO THEM ALL THE TIME FOR PROBABLY TWO YEARS. [speaking Spanish] MORGAN ALSO HAD JUST A HOST OF HEALTHCARE PROFESSIONALS. SHE HAD TO HAVE RESPIRATORY THERAPISTS. SHE HAD TO SEE THE PULMONOLOGIST. SHE HAD TO SEE THE NEUROLOGIST, PHYSICAL THERAPIST, OCCUPATIONAL THERAPIST. SHE DID AQUATIC THERAPY SO WE WERE WORKING WITH A LOT OF DIFFERENT PEOPLE WHERE PALLIATIVE CARE WAS OUR HOME BASE AND THAT'S HOW WE CONNECTED EVERYBODY. EVERYONE WAS ABLE TO GET THE SAME INFORMATION BECAUSE PALLIATIVE CARE WAS DOING THAT FOR US. BECAUSE ANY ONE SPECIALIST MAY BE PHENOMENAL BUT THEY ARE REALLY PAYING ATTENTION TO THE HEART. THEY ARE REALLY PAYING ATTENTION TO THE LUNGS, OR THE PAIN, AND THEY LITERALLY ARE NOT LOOKING AT THE WHOLE PERSON OR THE WHOLE SYSTEM. THEY REALLY COULD LOOK OUTSIDE OF THE BOX AND SEE HIM AS A PERSON AND NOT JUST AS A DIAGNOSIS. (Sarah Friebert, MD) THEY ARE HAVING CONVERSATIONS WITH THEIR SPIRITUAL CARE PROVIDERS. THE CHILD LIFE SPECIALIST IS ELICITING SOME OF WHAT THE CHILD'S VISION IS OF HIS OR HER LIFE. THE HOME CARE NURSE IS HEARING OR SEEING THINGS. THE SOCIAL WORKER IS PICKING UP ON THINGS, AND WE'RE PUTTING THAT ALL INTO THAT TRANSDISCIPLINARY SOUP IN A WAY THAT GETS MISSED WHEN THE DECISIONS ARE MADE ONLY BASED ON WHAT HAPPENS IN A TEN MINUTE OFFICE VISIT OR AN ACUTE-CARE STAY IN THE PICU WHEN THE CHILD IS AT HER WORST, AS OPPOSED TO CALM DECISION-MAKING OR CONVERSATION ON AN ONGOING BASIS OVER A LONG TERM WHERE YOU ARE REALLY ASSESSING THE WHOLE NEEDS OF THE FAMILY. AND I THINK THAT'S WHAT PALLIATIVE CARE BRINGS. PALLIATIVE CARE ENCOMPASSES ALL OF THE DOMAINS OF CARE THAT RELIEVE SUFFERING FOR THE WHOLE PERSON AND FAMILY, AND AN INTEGRAL PART OF THE ILLNESS JOURNEY CENTERS AROUND THE SPIRITUAL DOMAIN THROUGH WHICH FAMILIES FIND MEANING, CREATE LEGACY, AND DEVELOP A RELATIONSHIP WITH THE TRANSCENDENT. SERVING AS CHAPLAIN ON THE PEDIATRIC PALLIATIVE CARE TEAM IS A WONDERFUL PRIVILEGE BECAUSE I GET TO SIT WITH PATIENTS AND FAMILIES AND I GET TO ENGAGE THEM IN TALKING ABOUT WHAT BRINGS THEIR LIFE MEANING AND PURPOSE. KAREN'S BEEN VERY SWEET. I'VE HAD HER IN THERE A COUPLE OF TIMES WHEN KASSIE'S BEEN VERY SICK AND PRAYING WITH HER HAS MADE ME FEEL REALLY, UHM, FULFILLED. I ALWAYS BELIEVED IN GOD BEFORE BUT WITH KASSIE, MY FAITH HAS DEFINITELY GOTTEN A LOT STRONGER. I TALK TO GOD A LOT AND I ALWAYS LIKE TO HAVE THAT SECOND PERSON THERE, YOU KNOW, JUST MAYBE TALK TO, LIKE, WHAT'S HEAVEN LIKE, OR WHAT WOULD HAPPEN IF SHE WOULD PASS? WHAT WOULD THINGS BE LIKE FOR HER? YOU KNOW, JUST THE LITTLE, MAYBE SOMETHING THAT WOULD BE STUPID TO SOMEBODY ELSE BUT IS VERY BIG TO ME. GRANT HICKMAN, THE OLDEST OF THE THREE BOYS, DIED RECENTLY AT THE AGE OF NINETEEN. THE PALLIATIVE CARE TEAM HELPED THE HICKMANS WITH DIFFICULT DECISIONS AT THE END OF LIFE. MY OLDEST SON PASSED IN DECEMBER AND WE HAD MIXED VIEWS WITHIN THE FAMILY AS FAR AS WHAT WE SHOULD DO PRIOR TO THAT, THE COUPLE WEEKS LEADING UP TO HIS DEATH, AND WE HAD A LOT OF ETHICAL ISSUES THAT WE WERE STRUGGLING WITH. BOTH DENISE THE SOCIAL WORKER AND DR. FRIEBERT CAME TO OUR HOUSE SEVERAL TIMES AND I REMEMBER THEM COMING IN JEANS AND I REMEMBER THEM SITTING DOWN IN OUR LIVING ROOM AND I THINK THE STYLE OF CONCERN AND LEADERSHIP THAT THEY GAVE US WAS SO IMPORTANT BECAUSE WE DIDN'T KNOW WHAT TO DO. WE HAD NEVER WENT THROUGH THE DEATH AND DYING PROCESS, UHM, AND WE WANTED TO HOLD ON BUT WE DIDN'T, WE DIDN'T KNOW WHAT WAS BEST FOR GRANT. AND THEY, WITHOUT ANY JUDGMENT OR WITHOUT ANY REAL DIRECT DIRECTNESS, THEY WALKED US THROUGH ALL THE CHOICES AND THEY ALLOWED US TO MAKE THOSE CHOICES WITH DIGNITY FOR GRANT AND TO THIS DAY, I JUST APPRECIATE THE WAY THEY WORKED WITH US. (Sarah Friebert, MD) OUR CHALLENGE AS A PALLIATIVE CARE TEAM WAS FIRST AND FOREMOST TO FIGURE OUT WHAT WAS IN GRANT'S BEST INTEREST AND SUPPORT THAT, AND SECONDLY, TO FIND A WAY THAT ALL SEVEN OF THESE PEOPLE WOULD BE ABLE TO CONTINUE TO LIVE AFTER GRANT DIED, AND FEEL OKAY ABOUT WHAT HAPPENED. IF THIS ISN'T HANDLED WELL YOU'VE GOT SEVEN LIVES THAT WILL BE FOREVER CHANGED. NOW, THEY'RE GOING TO BE FOREVER CHANGED ANYWAY, NO QUESTION, BUT IF YOU'RE LEFT WITH RESIDUAL GUILT OR ANGER OR CONFUSION OR WHATEVER, IT JUST MAKES IT THEN THAT MANY TIMES WORSE. SO OUR CHARGE, IF YOU WILL, WAS TO TRY TO MEDIATE A SOLUTION THAT PRESERVED GRANT'S DIGNITY AND QUALITY OF LIFE TO THE BEST OF OUR ABILITY AND REALLY WAS IN HIS BEST INTEREST, BUT ALSO ALLOWED EACH OF THOSE FAMILY MEMBERS TO GET THERE IN THE WAY THAT THEY COULD. THEY WERE ABLE TO ALMOST NEGOTIATE THE FAMILY DECISIONS INTO A GROUP CONSENSUS THAT EVERYBODY COULD LIVE WITH. WE STILL, SIX MONTHS LATER, ARE VERY COMFORTABLE WITH THE WAY WE WERE COUNSELED AND THE WAY IT ENDED UP. WHEN SHAUNIE HOPFE GAVE BIRTH TO HER SON NOAH SHE WAS A SINGLE MOTHER OF TWO DAUGHTERS NAMED JOI AND TRINIDI AND A SON NAMED NIKO. NOAH WAS BORN WITH A RARE FORM OF TRISOMY 13, A GENETIC DISORDER THAT CAUSED HIM TO HAVE NUMEROUS MEDICAL PROBLEMS AND PHYSICAL DEFORMITIES. HE HAD APNEIC EVENTS WHERE HE WOULD STOP BREATHING AND TURN BLUE AND OFTEN NEEDED RESUSCITATION. HE DIED IN THE HOSPITAL AT SIX MONTHS OF AGE AFTER ONE OF THESE EPISODES. THE TWO TIMES WHEN HE STOPPED BREATHING I CRIED AND I TOLD HIM DON'T LEAVE ME AND HE WOULD START TO BREATHE AGAIN BUT SLOWER, AND THEY TOLD ME THAT HE'S JUST WAITING FOR ME TO LET HIM GO, SO THAT THIRD TIME I DIDN'T ASK HIM AND I JUST CRIED AND HOLD HIM AND WAS ROCKING HIM AND HE DIDN'T COME BACK ON. AND I FELT HIM STOP BREATHING FIRST, AND THEN I FELT HIS HEART STOP. AND THEN THE DOCTOR SAID THAT HE WAS GONE. AND AT THAT POINT LIKE, NOBODY COULD GIVE ME ANYTHING UNLESS IT WAS GIVING ME NOAH BACK. YOU KNOW, BUT THEY MADE SURE THAT DURING HIS LAST MOMENTS I HAD EVERYTHING I NEEDED TO BE COMFORTABLE AND THAT HE HAD EVERYTHING HE NEEDED. IT'S A HUGE PRIVILEGE TO BE ABLE TO, UHM, TO BE PART OF ANY CHILD'S END-OF-LIFE THAT I'M WITNESS TO. IT IS AN AMAZINGLY EMOTIONAL AND SPIRITUAL AND PASSIONATE MOMENT THAT SOMETIMES IS AWFUL BUT IT'S HAPPENING, WE CAN'T DO ANYTHING ABOUT IT HAPPENING SO WE MAY AS WELL BE THERE AND RECOGNIZE THE PRIVILEGE FOR WHAT IT IS. IT'S A PASSAGE. I LOOKED IN MORGAN'S EYES... AND I SAID, THANK YOU, MORGAN, AND I RUBBED HER HAND ON MY FACE, AND I KISSED HER. AND I SAID, I LOVE YOU SO MUCH, YOU'RE SO BEAUTIFUL. AND YOU TEACH MOMMY SO MUCH, AND I THANK YOU. YOU ARE THE BEST THING IN THE WHOLE WORLD. AND I JUST KEPT SAYING, I LOVE YOU SO MUCH. IT WAS A WONDERFUL EXPERIENCE OF THE WHOLE FAMILY BEING TOGETHER AND WATCHING HIM DIE PEACEFULLY, AND PALLIATIVE CARE ALLOWING THE WHOLE PROCESS TO BE DONE WITH GREAT DIGNITY, ALLOWING US TO ALL EXPERIENCE DEATH IN A WONDERFUL WAY. I REMEMBER, WE'RE VERY, UHM, SPIRITUAL, AND IN HIS LAST DAYS, YOU KNOW, WE SANG AND WE WORSHIPPED AND WE PRAISED, AND WE WATCHED HIM GO QUIETLY. AND I DON'T BELIEVE HE HAD ANY PAIN. I JUST BELIEVE HE JUST WENT WITH PEACE. THE DEATH OF A CHILD DOES NOT END THE FAMILY'S RELATIONSHIP WITH PALLIATIVE CARE. THEY HAVE ONLY COMPLETED PART OF THE JOURNEY, AND AS THEY GO THROUGH THEIR GRIEVING PROCESS, BEREAVEMENT SPECIALISTS ARE AVAILABLE TO COUNSEL THE SURVIVING LOVED ONES THROUGH ONE-ON-ONE INTERACTION AND VARIOUS PROGRAMS ORGANIZED FOR INDIVIDUALS WHO HAVE EXPERIENCED A LOSS. ONE SUCH EXAMPLE IS THE GOOD MORNING PROGRAM, A GRIEF GROUP FOR CHILDREN AND TEENAGERS WHO ARE COPING WITH THE LOSS OF A LOVED ONE, BE IT A PARENT, GRANDPARENT, SIBLING OR ANYONE ELSE WHO PLAYED A SPECIAL ROLE IN THEIR LIFE. WELCOME TO SAND TRAY PLAY. TONIGHT I'M GOING TO ASK YOU TO BUILD YOUR WORLD. AND WHEN YOU'RE READY TAKE YOUR HEART-SHAPED BOX AND NOTICE THE MINIATURES ALL AROUND THE ROOM. AND YOUR HEART'S GOING TO RESONATE TO SOME OF THOSE MINIATURES, EITHER POSITIVELY OR NEGATIVELY, AND THOSE ARE THE ONES YOU WILL PUT IN YOUR BOX. LET YOUR HEART CHOOSE THE MINIATURES THAT YOU WILL USE TO BUILD YOUR WORLD. AND SINCE WE'RE MISSING SOMEONE SPECIAL IN OUR LIVES, I'M GOING TO ASK THAT AS YOU BUILD YOUR WORLD TONIGHT, YOU INCLUDE YOUR SPECIAL PERSON IN YOUR WORLD, AND JUST LET THE WORLD EMERGE FROM YOUR HEART WITHOUT THINKING. (girl) THIS IS MY BIG BROTHER. THIS IS HIS FAVORITE ANIMAL. (Carol Stanley) THAT'S HIS FAVORITE ANIMAL. (girl) YEAH, AND I PUT THE CLOWN BECAUSE HE WAS A BIG JOKESTER. HE ALWAYS PULLED PRANKS AND CRACKED JOKES. THIS REPRESENTS THE PAIN THAT I FELT WHEN HE PASSED AWAY. I REMEMBER THE TIME BECAUSE THERE'S NOT A LOT OF TIME WHEN SOMEBODY'S DYING, SO I PUT THAT THERE. AND I PUT THE BLACK HEART BECAUSE THAT'S HOW MY HEART FEELS. YOUR HEART FEELS BLACK. UH-HMM. WE KNOW IT DOESN'T END JUST WITH THE DEATH OF THE CHILD, IT'S GOING TO BE A FABRIC OF THEIR LIFE FOR THE REST OF THEIR LIVES, SO WE PARTICULARLY TRY TO FOCUS ON THAT FIRST YEAR, YEAR AND A HALF AFTER THEY DIE TO KEEP IN CLOSE CONTACT WITH THEM. PHONE CALLS, E-MAILS, DIFFERENT PROGRAMS THAT WE OFFER ARE AVAILABLE. THEY ASKED ME, YOU KNOW, HOW IS IT GOING, YOU KNOW, HOW AM I DEALING WITH IT? AND I EXPRESSED TO THEM THAT THE KIDS WAS ONE OF MY MAIN CONCERNS AND THEY JUMPED RIGHT IN. SAID, THIS IS THE PROGRAMS WE HAVE, YOU KNOW, WE CAN SIGN THEM UP. THAT WAS A VERY GOOD THING, ESPECIALLY, AT SCHOOL, THE KIDS BECAME, HEY, THAT'S THE GIRL WITH THE BROTHER THAT DIED. BUT IN THIS PROGRAM THEY HAD OTHER PEOPLE, OTHER LITTLE PEOPLE THAT WAS DEALING WITH THE SAME THINGS THEY WAS, SO THEN THEY FELT LIKE THEY'RE NOT ALONE. THEY HAD THE KIDS DRAW PICTURES TO EXPRESS THEIR EMOTIONS. A LOT OF TIMES LITTLE KIDS, THEY CAN'T, THEY DON'T KNOW WHAT WORDS TO USE. AND WHAT WE FIND IS THAT PEOPLE THAT CAN EXPRESS THESE THINGS AND FIND HEALTHY WAYS TO EXPRESS THESE FEELINGS AND REACTIONS ARE GOING TO BE MORE HEALTHY OVER THE LONG RUN. (Shaunie Hopfe) NIKO, HE'S STILL, HE HAS DREAMS ABOUT NOAH. UHM, ONE NIGHT HE WAS LAUGHING BUT I THOUGHT HE WAS CRYING, LIKE UNCONTROLLABLY CRYING, LIKE SOBBING, BUT THEN I SAID, NIKO, NIKO. I SHOOK HIM AND WOKE HIM UP AND I NOTICED HE WAS LAUGHING, AND HE SAID, MOMMY, STOP, I'M PLAYING WITH NOAH. AND THAT REALLY SHOCKED ME. THAT REALLY SHOCKED ME BECAUSE THAT WAS NOT AT ALL WHAT I EXPECTED, BUT IT'S STILL COMFORTING, YOU KNOW, AND TO KNOW THAT EVEN THOUGH NOAH'S PASSED, NIKO IS STILL HAVING A RELATIONSHIP WITH HIM. I THINK WHEN YOU HAVE A FAMILY THAT'S GRIEVING YOU WANT TO BE AS OPEN AS POSSIBLE TO REALIZING THAT THERE'S GOING TO BE REACTIONS OF ALL TYPES AND YOU DON'T WANT TO HAVE IN YOUR MIND ANY KIND OF PRECONCEIVED NOTION OF WHAT IT SHOULD LOOK LIKE, BECAUSE IT'S NOT GOING TO LOOK LIKE THAT. IT'S GOING TO BE UNIQUE FOR THAT FAMILY. PEOPLE WHO ARE EXPERIENCED WITH GRIEF, THEY KIND OF, THEY HAVE SOMETHING DIFFERENT TO BRING THAN PEOPLE WHO LOVE YOU, BECAUSE PEOPLE WHO LOVE YOU ALSO DON'T WANT TO HURT YOU. I THINK BEREAVEMENT SPECIALISTS AREN'T AFRAID OF GRIEF. THEY DON'T TIPTOE AROUND. WHEN THEY ASK YOU HOW YOU'RE DOING, THEY MEAN HOW ARE YOU IN THE GRIEVING PROCESS? AND THEY ASK THE RIGHT POINTED QUESTIONS. I'M ALWAYS FREE TO REMEMBER MORGAN AND FREE TO TALK ABOUT HER AND PART OF MY, MY GRIEVING PROCESS IS, WHEN PEOPLE ASK HOW MANY KIDS I HAVE, AND I ALWAYS SAY, WELL, I HAVE TWO, AND I MAKE SURE TO SAY BUT MORGAN DIED AND PEOPLE ARE ALWAYS AFRAID OR THEY FEEL BAD THAT THEY ASKED ME THAT, BUT I LOVE IT BECAUSE IT'S LIKE I STILL GET TO HAVE HER WITH ME. IT'S JUST A WAY OF REMEMBERING HER, TO TELL PEOPLE HER STORY. IN PALLIATIVE CARE AS THE AMERICAN ACADEMY OF PEDIATRICS SAYS, WE FOCUS ON ADDING LIFE TO THE CHILD'S YEARS, NOT JUST ADDING YEARS TO THE CHILD'S LIFE. YOU KNOW, THINGS CAN ALWAYS HAPPEN AND THAT IS ONE OF THE THINGS THAT DR. FRIEBERT AND THE TEAM REALLY FOCUS ON, LIKE, YOU COULD GO OUT AND GET KILLED IN A CRAZY ACCIDENT BUT WOULD YOU NOT LIVE LIFE BECAUSE YOU "MIGHT"? AND THAT'S REALLY HELPED US WHEN WE WERE STRUGGLING THROUGH THE REALLY HARD TIMES TO REALLY EMBRACE WHO TYLER IS AND WHERE WE ARE NOW. (Shaunie Hopfe) I DIDN'T WANT WHATEVER TIME NOAH HAD TO BE FILLED WITH SADNESS. I JUST WANTED HIM TO HAVE A HAPPY LIFE HOWEVER LONG IT WAS GOING TO BE. I MEAN, I REALLY VALUED THE TIME WITH NOAH. PALLIATIVE CARE TOOK AWAY A LOT OF THE STRESS OUT OF THE SITUATION AND DAY ONE, THAT'S WHAT THEY TOLD ME, WE DON'T WANT YOU TO STRESS ABOUT IT. WE JUST WANT YOU TO ENJOY THE TIME WITH HIM. THEY ARE NOT HERE BY ACCIDENT. THEY GOT HERE FOR A REASON. AND THEY ARE HERE TO DO SOMETHING, AND IT IS SOMETIMES ACCOMPLISHED IN MINUTES AND SOMETIMES ACCOMPLISHED IN DAYS. BUT THOSE DAYS ARE AS SACRED TO THOSE PARENTS AS THE YEARS ARE TO ANY OTHER PARENT. I BELIEVE THAT THINGS HAPPEN FOR A REASON. WE DON'T KNOW WHY, BUT I THINK SHE HIT IT ON THE MARK WHEN SHE SAID HE'S TOUCHING SO MANY LIVES. (Cara Beatty) HE HAS TAUGHT ME SO MUCH, AND AS A PARENT, IT REALLY SPEAKS TO YOUR HEART WHEN PEOPLE COME UP TO YOU AND SAY, YOUR SON HAS TAUGHT ME SO MUCH. I'M SO GRATEFUL THAT I GOT TO MEET HIM. MY LIFE HAS BEEN ENRICHED BECAUSE SHE GIVES ME UNCONDITIONAL LOVE. SHE IS ONE OF THE BEST CUDDLERS. SHE, SHE LOVES YOU, NO MATTER WHAT. (Larry Hickman) THE THINGS THAT YOU WOULD STRIVE FOR NORMALLY IN MATERIALISM OR TRYING TO GAIN POWER OR POSITION OR WHATEVER, JUST REALLY KIND OF GO AWAY. THEY'RE NOT THAT SIGNIFICANT IN LIFE, AND I THINK THAT IT'S MORE ABOUT LIVING LIFE TO ITS FULLEST AND LIVING LIFE FOR OTHER PEOPLE AND CHERISHING THE MOMENT BECAUSE THE MOMENT WON'T LAST. WELL, I'VE LEARNED THAT, DON'T LET LIFE GET YOU DOWN, AND LIVE LIFE TO THE FULLEST. [giggling] [Vianett Perez speaking Spanish] [Salvador Perez] [speaking Spanish] [Vianett Perez speaking Spanish] BECAUSE OF WHAT WE'VE GONE THROUGH WITH MORGAN OUR PERSPECTIVE ON LIFE HAS CHANGED. (DeNica Bishop) GOING THROUGH THIS PROCESS WITH MORGAN, IT WAS LIKE, WATER STARTED TO TASTE BETTER, AIR STARTED TO SMELL BETTER. IT WAS LIKE A BRAND-NEW CLARITY ON LIFE AND THINGS THAT WERE, THEY USED TO SEEM SO BIG TO ME WERE NOW SMALL IN COMPARISON. YOU CAN'T GET THAT FROM ANYWHERE ELSE. YOU CAN'T READ IT IN A BOOK. YOU CAN'T DREAM IT UP. YOU CAN ONLY GO THROUGH IT. THERE'S SO MUCH THAT YOU GAIN. THERE'S A FIGHT IN YOUR SPIRIT THAT YOU GAIN THAT SAYS, NO MATTER WHAT WE FACE, WE HAVE A RESOLVE THAT SAYS WE'RE GOING TO GET THROUGH IT. AND IT WOULDN'T HAVE BEEN THERE IF MORGAN HADN'T, HADN'T SHOWN US. ♪ ♪ ♪ ♪

Info

Channel: PBS Western Reserve

Views: 48,181

Rating: undefined out of 5

Keywords: Pediatric Palliative Care, Akron Children's Hospital, life-threatening medical conditions, chronic medical conditions, health care professionals, Akron, Ohio, Palliative Care (Organization), Pediatrics (Medical Specialty), Northeast Ohio, Western Reserve PBS, Western Reserve Public Media

Id: wPmoxlqwnIc

Channel Id: undefined

Length: 54min 51sec (3291 seconds)

Published: Wed Dec 18 2013