Meet Our Inspiration: Calliope

“You know you're in trouble,” Maria Kefalas said sadly, “when you're fast-tracked for the Make-a-Wish Foundation.” Kefalas, 45, is a St. Joseph's University sociologist whose daughter Calliope, 3, has a rare and untreatable genetic disease called late infant onset metachromatic leukodystrophy or MLD. It's a diagnosis without hope: Most patients don't live beyond age 5.

People born with MLD, lack an enzyme in their blood called arylsulfatase A. Without it, the development of the myelin sheath - the fatty covering that acts as an insulator around nerve fibers - is impaired, according to the National Institute of Neurological Disorders and Stroke. Lack of a sheath leads to a breakdown in communication between the nerves and the brain. It brings on paralysis, blindness, and death, according to the MLD Foundation.

Faced with grief of overwhelming power, Cal’s family launched the Calliope Joy Foundation. Unlike most foundations dedicated to a single disease, Calliope Joy isn't looking for a cure to save their daughter. "Cal's disease is so rare, there's no sense working on this one form of leukodystrophy, there are 40 types of this disease alone and the leukodystrophy family of diseases are all quite rare.

The fact is, we just don’t know where a breakthrough will happen so we want to support families today and inspire a new generation of doctors and researchers for the future in pediatric neurology, a field that has not witnessed the progress of oncology or cardiology," said Kefalas. “We want to be a part of the big picture that, one day, offers hope where there is none now.”

"With grief, you have to go crazy," Kefalas said. "The question is, what do you do with your crazy? The foundation gives us a purpose. We are compelled to do something that honors her. That's the only consolation we have."

Based on an interview by Alfred Lubrano originally published in a front page story for the Philadelphia Inquirer.

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    Wednesday, April 23, 2014

    A long day of nursing visits and Pat is okay

    It's funny but Pat doesn't call back in for test results and he spent his visit chatting with Dr. Hartner about being a single dad, anyway, Pat insists he is fine and Dr. Hartner has told us nothing to change this view. Like Dr. Seagull, my therapist who worked with Dr. Hartner for years joked, "If the oncologist wants to tell you about what's going on in his life and share his problems, he is probably not too worried about you." So, I will take that.

    Many of you have contacted me about Pat's follow up visit. Well, Pat said he and Lee had a nice chat. I texted back, "What the hell does that mean? You had a nice chat at your 3 month follow up." When you spend as much with doctors as we do, they join your circle of friends, I suppose. And Pat and I like Lee very much. So, Pat explained he and Lee spoke about his vacation and the complexities of being a divorced parent. Lee is divorced? This was news to me .My immediate thought was which of my single friends might appreciate meeting a handsome doctor. When I mentioned this to Pat later,  he gave me the dirtiest of looks.  He made it very clear that I was not going to start meddling with Lee's life for my own entertainment. But a doctor, c'mon.

     Pat has a rather detached way of dealing with three month check ups, he does the tests and waits for them to call back, figuring that if there is a problem they will let him know. Maybe this is denial or repression but if he isn't worried I won't be either. Nothing in his tests that are back so far suggests anything to be worried about, but, in the oncology world, no news can, with a sprinkle of denial, become the closest thing to good news.

    For Cal, things are better and more managed. We have rearranged the order of her meds and she is, finally, sleeping through the night again.  I came home today to find three nurses attending to her as she dozed off on the couch. One nurse was getting her favorite show, Kipper, to play on the DVR, and another nurse let Cal's feet lay on the nurse's lap. Everyone took turns rubbing Cal's head of curls and telling her how beautiful she is.

    The nurses fuss about Cal, because, unlike many other patients, Cal is quite goodnatured. As you can imagine, many special needs kids can be volatile: harder to settle down, more agitated and even explosive. Cal only smiles sweetly and cries when when she is uncomfortable.

     Her nature is so lovely that many of the nurses who have had "tougher" patients seem to cherish spending time with the mermaid. I can see this as a gift for them to, for they recognize how she returns their attentions and love 10 fold.

    But, sometimes the new nurses have said things that have felt upsetting. A few of them remarked " I am surprised Cal recognizes you and her dad and she still smiles and laughs. "

    Such comments remind me of what is coming and get uttered because people long to believe Pat and I seem to be so strong. The nurses believe our act of the courageous parents a bit more than they should.

    The nurses are also more concerned about Cal. Everytime I call Abington, Karen, Cal's nurse calls me back breathless worried about what might be wrong.  The on-call folks at PACT are the same way. The chaplain at PACT, Dexter, a former Catholic priest, sends me beautiful notes and thoughtfully chosen essays he says I will appreciate.

    My friend Amy, a hospice coordinator in Boston, sent PJ and Camile a lovely children's book written for children facing grief.  The story about Trouble the Dog arrived with a stuffed dog- Trouble- and medallions the children can wear about how when trouble comes they must be "tough" like Trouble the dog showed them. Camille thumbed through the book without comment and asked me about my childhood friend Amy and said nothing else. PJ was thrilled with the chain and the stuffed animal and has taken to sleeping with Trouble and wearing the medallion with a big grim.  It was a perfect gift for him, a child-friendly message of support and concern, and a gentle reminder that other children face what he must.

    But maybe, the thing that stuck with me the most this week was our new nurse Shanaya saying how Pat and I were the only family she worked with who stayed and helped her care for a patient. No doubt, other parents rush off to work or are so in need of help that the hours of nursing coverage provide a much needed respite. There are days when Pat and I rush to the gym or an appointment or work too, but on days when I don't teach, it is my preference more and more to be here with Callie.

     Pat suggested the reason for Shanaya's comment might be because most employers are not as flexible as ours, but my friend Laura had another theory.

    Laura said many parents facing the loss of a child simply need to keep some distance because being around a sick child just adds to the grief and pain. Laura suggested that how Pat and I are drawn closer to Cal is not how other parents face such a situation.  This startled me and suddenly I felt great sadness for other parents so overwhelmed by grief they could not be as present for their children. I have no desire to judge other parents but it shook me that someone who was observing Pat and me might view what we do as exceptional.

    My friend Laura said, "You understand that through pouring all this unfiltered love into Cal means less regret and second guessing but also a more, raw and complete sort of grief that other parents fear might overwhelm them, so, for self-preservation, they keep a certain amount of distance or use denial to get through this."

    And then I was frightened, for could it be that loving Cal so much and with such total abandon meant that Pat and I would be less able to survive this.  There would be less of us left.

    It is hard to imagine how this will end but I just don't understand how anyone could love a child more or less than we love Cal.  It never occurred to me that you could hold back your love for fear of self-annihilation.

    Monday, April 21, 2014

    Sleeping on mama today

    Childhood's end

    I just say to myself that if his oncologist Dr. Hartner tells Pat his numbers look good then I will be able to exhale and stop white knuckling it quite so much. I won't miss this frog that's been in my throat for weeks.

    Pat assures me he feels good, or at least, not sick. With  multiple myeloma you feel crappy in a uniquely horrible way.  Of course I want Pat to be okay for him, but, selfishly,  I just don't how how much more I can take. I tell myself if he is fine now we get to celebrate something, well Pat does not like to get too happy or sad. Like my friend Deirdre observes, "the Irish don't do emotions, we have moods." All this feeling is exhausting from his perspective and it is dangerous to read too much into one set of tests.

    I am not sure if we enjoyed Easter so much as got through it.  

    My brother summed up Easter this year  as something that had to be endured.

     Everyone, from my mother to PJ, tried  to make up for Daddy being gone. Easter was his big event. He would never let any of us host, even when he got cancer, there was still going to be a celebration at his house.

    My older children remembered all the Easters in Boston with Papou's Easter Bunny.

     Daddy's Easter Bunny was a live rabbit for the grandkids' enjoyment. The bunny was not a pretty one intended as a pet, but an ill-treated creature meant to be eaten. No one would pet it or even take its photo. When any of us pointed out the ethical questions of Daddy's Easter Bunny, Daddy insisted he was saving it from getting turned into stew. Who could argue with that?

    My Dad figured a few days of being entertainment for his 10  grandchildren was hardly exploitation, especially given its doomed fate back on the farm.

    For the rest of the year, the kids and my father would try to find the Easter Bunny, though the adults quietly suspected the foxes or coyotes had gotten the poor thing.  The children and Dad enjoyed these Easter Bunny sightings , Daddy always said he saw the Easter Bunny with his family of little bunnies.  We all indulged this fantasy of a happy ending for the Easter Bunny's service to children. 

    Because my father never had a childhood, his parenting style was based on his view that kids always wanted unstructured, whacky fun. He loved tormenting my mom with activities like the "Easter bunny"  pooping money and candy for the little kids or sticking toys up the chimney that Santa had brought over a few days ahead of schedule. Then there was my Dad who potty trained his grandsons by  introducing them to the pleasures peeing in the  snow. Potty training and learning how to write their names, all in one activity.

    There is a long history of my dad doing things like this. There was the summer my father built a zip line from a metal wire so we could climb up a tree and fly into the pool. This was the time before bike helmets and car seats so no one questioned my father as he hurled his children and their friends into the pool. 

    My father was a big man, in his physical appearance and his personality. He let people think his sunglasses and the Cadillac he drove meant he was connected to the Greek mob (if there was such a thing).

    Our classmates and boyfriends asked if they should be frightened of my dad, I would shrug my shoulders and just let the rumours stand.

    Sure Dad could be loud and get angry and bellow and bulge his eyes out but my Dad, at his core, was a 10 year old boy trapped in a man's body.

     A childhood friend of my brother's pointed out how big the shoes my nephew, Rob's son, John Kefalas, would have to fill by getting this name. How could there be another John Kefalas?

    All three  grandsons were named after my Dad and this is no coincidence. My mother once complained that none of her granddaughters had been named after her.  I think all of the boys are Johns because every grandson would be needed to carry on what my father started.

    My father had suffered through the Nazi occupation, being on his own with an ailing mother, longing to see his father, a sea captain, who would not return to Greece for 8 years, leaving my father as the man of the house. After WWII, Greece descended into  civil war.

     Daddy rarely spoke of his childhood in Greece, he was more interested in carrying on his reconstructed American childhood. It was only after 9/11 when Daddy grew weary of America'a shock over  terrorism on the homeland when he confided to me, "You know you have something to be scared about when your neighbor threatens to slit you and your mother's throat in your sleep." 

    The details are unclear but my father's family were anti-communist, and there were neighbors who hoped Greece would go in a different direction. The Civil War in Greece is not a widely known history in the US but after the war had decimated the country and it was unclear whether Greece would join the Eastern bloc or not, the period of transition was particularly bloody, even by the standards of the horrors that gripped Europe during this time.

    A few years before he died, Daddy told me he had lived in a tent for a year as a boy when earthquakes struck the his island. Then, his cousin Poppy, told me that they were so hungry as children that when the Americans brought in shiploads of food and handed out Crisco, the family spread that vile stuff on bread and ate it like it was the world's best tasting butter.  Poppy said, "Can you imagine how hungry we must have been to think Crisco was butter?"

    It was strange how little he had spoken of this to us his children .

    Daddy did not respond to the loss of his childhood with melancholy or resentment. Instead, as a father he worked to make his children never stop knowing the joy and security of a  father who would keep the cruelties of the world at bay. He never wanted our childhoods to end.

    This was the genius of my father, to create the thing he had never known, to imagine the possibility of a wondrous childhood and manufacture it for his four children. And even as we grew up and reached adulthood, he remained a wild, trouble-making boy who related to young children better than his peers.

    Looking back, my fundamental conflict with my father was that I was an old soul, and he was a little boy. He could not understand why I never  just wanted to be a kid, and I could not understand why he wouldn't grow up.

    In the end, it was not having cancer that ended childhood for my Dad. He loved to go to the infusion suite and shower embraces and terrible jokes on the other patients. He was the class clown of the cancer ward. 

    He was never sad until Callie got sick. The magic spell of his belief  in childhood only ended with MLD. That should tell you how humbling this God-awful disease is. It is the only thing that ever defeated my father.

    Looking back, of course Cal's diagnosis destroyed Daddy. After surviving war's brutality and starvation and beating the odds and living out the American Dream, Callie's illness was a problem he could not fix or protect us from.

    Not only would I, his oldest child, face terrible pain but now Camille and PJ would know the tragedy of his own lost childhood.

    My dad's secret weapon, refusing to grow up and always looking at  the world the way a child does could not get him accept his granddaughter's fate. And in his final year, this was the first time I saw him lost, adrift, angry and bitter. How could there be no miracle waiting for his beautiful Calliope. Why would God betray us this way?

    Sometimes I wish I had lied to my father and never told him about Callie. I suspect he might still be alive if we had shielded him from the truth of Callie. But, it still amazes me how profound love for his children could also be his undoing. There was no way to reconcile the truth of Cal's fate the view of the world he had so carefully constructed for himself.  

    Daddy believed in miracles and the impossible and he was frustrated by my dogged acceptance of the truth. This was not the sort of world he could believe in...and so, he let go...nothing made sense in a world that would take Calliope away so cruelly.

    In a sense, he loved his children and grandchildren so much, it was not possible to go on when Cal was dying. He could cling to childhood no more.

    Wednesday, April 16, 2014

    The new hospital bed- Rashida and Cal all snuggled up

    Day 5-The New Normal

    It's hard to remember how long we have been home, the days sort of blur together.  Cal's new nurse arrived today and while I was upset by leaving behind the old routine, so-called skilled nursing made things easier. Shanaya can give medication, manage feeds, and even carry Cal as well, if not better than I. Stephanie who is no longer an au pair but a young woman from Scotland who lives with us, a full-fledged member of this family. Steph would not let Cal be alone in the house with the new nurse.  I was so moved by her devotion and relieved that Camille and Stephanie approved of this new person in our lives.

    Karen, one of Cal's hospice nurses, also quizzed Shanaya about her experience and training when it came to Cal. And while we all adore Cal's aides, the more senior nurses reluctantly agreed that Cal's care required a new level of training just to manage an uneventful day.

    Today was a good day, after yesterday's good day, and so I feel optimistic about my trip to St. Lucia. Cal and I even took a 30 minute stroll. I can't tell you how much thought, work and expense has gone into taking Cal for a walk after more than a year of being housebound. Pat is also hoping his trip to Ireland will still be on.  Cal continues to tolerate her feeds and move her bowels. In the conversation with the nurses and doctors, there is this rarely discussed worry that once Cal can't eat or move her bowels, we will be at our enough. Though, before that happens, Cal's ability to breathe may be compromised first. It is dangerous to wish for anything for Cal. One is better off just accepting what is and hoping for the best.

    But, it frightens me to see the nurses worry about the feeding tubes not working and to hear Shanaya declare Cal's care straightforward. If this is straightfoward, how much worse can this be? The possibility of how this gets worse is the most frightening thing to consider.

    PJ has expressed his discomfort with what he calls "the hole in Cal's stomach." I promised him that the hole in Cal's stomach was there to make Cal more comfortable. I don't think he believed this explanation, and continued to express grave concern about this tube coming out of his sister 's belly. He had been so brave about the hospital bed and the stroller and the suction machine, but the tube frightened him like nothing else.

    I mentioned this to a friend, and he said, "Of course this is frightening, it frightens all of us." But, maybe I have spent so much time in CHOP that the horror of it has passed for now and I have far more scary things to contemplate.

    It has surprised us all how much Cal prefers her hospital bed. While I am relieved the new equipment is doing its job, this is more evidence of how much things have changed.  No one can believe how quickly Cal has chosen the comfort of her bed over snuggling with Daddy and Mommy on the big queen bed.

    But, even though the hospital bed and the pole and the generator and the meds are everywhere, each of us, the nurses, the kids, Stephanie and me all work to make sure the house on the hill does not turn into a hospital ward.

    We have retreated on this issue, but not surrendered as of yet.

    It is hard to be sleeping in my own bed and it is even harder to believe Cal will be okay without me leaving her side. These days it is harder to pull myself away for work or the market or errands or the gym.  Now, I think more and more seriously about leaving work and being home with Cal full time.

    But, like I said, we are just going to enjoy each day.

    I know what is coming, Cal's care feels more and more like my Dad's in that last year. It is Easter this week, and I am forcing myself to buy a lamb and get candy and do a show of okayness for the children.  Daddy loved Easter, this was his holiday, and this is the first time in my life he will not be putting a lamb on a spit and hosting his big celebration at the house.

    Everything is changing, how we care for Cal, how we imagine the future and even how we celebrate traditions that have been around for ages. It is hard to be constantly in a state of uncertainty and reinvention.