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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Saturday, September 20th, 2014
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    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.

    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.

    Friday, April 11, 2014

    Cal's new schedule

    Food fairies- look at what was left at my house. Thank you Greek food fairies.

    My Passover Essay (originally published in 2013)

    For Amy Waldman, who found a way to put lamb's blood on our door this week...

    I had been contemplating this Paschal season a great deal, and my thoughts about the holidays- namely Passover- may be bordering on obsession. After all, my child is dying and Easter and Passover are about the death and suffering of children, the pain and horror of it, and then, ultimately, the liberation that is made possible through cleansing the world of evil with children's blood.

    As I have said and pondered so much in these essays: God's love is not possible without suffering. And, as I think about this holy week, I am struck by how an innocent child's suffering, in both these religious stories, has the power to unleash the greatest force for good that will act out God's divine will and change the world.

    In the Passover story, Moses is saved by his mother who loved him so much she gives him up. The infant boy is found and raised and cared for by an Egyptian princess. A mother's love for her adopted child undoes the evil of a man who has ordered Jewish infants slaughtered because Pharoah fears the loss of his power. And then this child, who is saved through a miracle of love and sacrifice, leads his people to escape the bonds of oppression and slavery. But, to free Moses' people, the Lord visits ten plagues upon Egypt. And the Egyptians only release their Jewish slaves after God sends the angel of death to kill all of Egypt's first born children.

    It is the death of these children, including Pharoah's own son, that forces the Egyptians to end - through fear and pain and the clarity such agony brings- their barbarism against the Jews .

    Moses (as God's tool) changes the world with the death of children. And of course, Passover is a celebration of how Jews are saved from this curse by putting lamb's blood on their doors.

    And then, of course, Christians believe that God sacrificed his only son and watched him die a horrific death so that human beings could be saved from our selfishness and sinfulness. I have written about this before and need not revisit the story now. [If you are interested in seeing the Easter version of this blog, check out Why God?]

    I am no theologian or Biblical scholar, but, as Cal's mother, it is remarkable how the blood of a child is the ultimate sacrifice required by God for goodness to triumph.

    So, what is the good that will come out of Cal's suffering? Of course I am NOT God or Moses, but, in the Paschal season I must wonder what I must do to honor my daughter's life. How shall my daughter's suffering make way for goodness and change and salvation and redemption. I must admit, as I sit here, with my chest aching and my eyes swollen in tears, I lack the clarity to see that this might be right now.

    Today, I want to wallow in my self-pity and I don't want to change the world, I just want a miracle.
    I can't stop wishing that I could put lamb's blood on our door and make the angel of death pass over us.

    Discharge Day, Residents and COWs (not the sort that moo)

    I had taken to talking to the doctors about the other d-word, discharge. I had given up on asking because every solution seemed to create new problems to be fixed.

    The good news is that Cal slept through the night, tolerated all her feedings, can't stop smiling and laughing. The new medication recommended by Dr. Waldman, baclofen, a drug that didn't do so great to treat seizures and causes sleepiness has been effective in making Cal more comfortable. If the new med is making her drowsy, her increased strength from the regular feedings has balanced it out.

    I am frightened to return home, I am worried how the older children will feel about the new normal. I will miss our aides who are like my adopted daughters  who will lose their positions to bring in a new team of nurses.

    Pat and I will have to deal with new people and get the whole new system in place.

    But, even with our sadness about leaving the old routine behind, there is such relief in coming home. There is no question Cal is doing better, just look at her recent photos.

    And, PJ and Camille miss Cal and me so very much. To be sure, Pat has had the more difficult job over the last three weeks, I could be the feral mother  here in the hospital, He had to go home and balance the needs of the older children as he broke his heart every night to leave Cal behind here.

    On days when he did not teach, he would rush to see us every morning in the hospital with a  breathless "How are my girls?"

     And all day long texts and calls would come with the same message.

    I don't think I could do what Pat did and go home and be calm and reassuring to the kids. I preferred to sleep in the chair beside Cal and just let the grief and fear engulf me. And people would say I was doing too much, Pat did far more.

    And so, the miracle of today is that we get to go home on our first weekend with 70 degree weather. Pat has so many plans, to take Cal for a walk and have her sit in the garden and watch him plant peas.

    The most magical thing that happened since this started three weeks ago was that Cal let Pat hold her on his lap and smiled and sang, because she could snuggle once again.

    So, today will be the day that the other miracle of Cal laying against our chest and matching her breathing to ours became possible again.

    We will give the new meds credit but also the special visit from Father Chris and the icon of the Virgin Mary he left on Cal's pillow.

    My father would have declared it a divine act, but, I don't want Dr. Waldman's treatment to be discounted. While Dr. Waldman demured to the drugs and a higher power for the breakthrough, the residents were quite eager to take a bow for Cal's improvement. I noticed the attendings indulged this, like a parent telling a child his painting was lovely even though it was just a brown blob of fingerpaint to the more objective observer.

    Then I remembered, it is Passover this week....of course pain and suffering create miracles and salvation.

    The Residents

    The residents may or may not have appreciated what a great teaching case this was. By week three, the residents directed their questions to me instead of the attending. Like an animal who had challenged a pack's leader, I tried to repair the hierarchy and submit to the attending's authority.

    "You should ask the boss not me.The attending is standing right here." I said grinning.

    And the attending, a mother and a doctor corrected me, "But you are the expert on Calliope."  

    The residents nodded mostly because the attending was teaching them how to deal with me and they seemed a bit horrifed by me- the selfie should indicate how terrifying I look- they were right to treat me like a wild animal roaming the corridors of the hospital. 

    Most of the moms on Seashore 4 are regulars, frequent flyers to the hospital. I liked to take the new parents under  my wings and show them the ropes. I am here for a death sentence, but most of them are just passing through and when they meet  me they experience the worst case scenario vicariously through us.

    Other people's tragedy is hypnotic stuff. Why do you think every news program or news program leads with what bleeds. 
    Remember Sandy Hook and last year's Boston Marathon?

    So I like to show the Seashore 4 west newbies where to find the free ginger ale and the towels.  I came to view myself as the Morgan Freeman character- Red- from The Shawshenk Redemption.) 

    Most families don't know that the residents are not really doctors yet and get frustrated by their "uselessness" (the newbies' word not mine). I tell them that they must direct all their questions and concerns to the nurses or the attendings, residents know less than you do about your kid....they are there for you to teach them how to be doctors. The new parents would nod in recognition at this. In such matters Bosk's classic study of medical training is beyond useful.

    Residents in Seashore West all women, are all so beautiful and fit, I don't know how they can look so lovely as residents, but they are young so youth is the most wonderous beauty secret.

    They remind me of my students and my friends from Wellesley, smart, very book smart, eager to please, attentive, and hard working. And, with the routinization of medicine, the residents now travel with COWs (computers on wheels).  When I heard the nurse refer to the COWs, I thought she was calling the residents cows, like a herd of females grazing through the corridors. This would be a fairly accurate picture of grand rounds.  But, no, COWs are the computers on wheels that move around with the residents as they walk. If it is quiet, you can hear the docs coming because of the metal wheels on the lineloleum. Some residents put have coffee cups and sodas stolen from the lounge perched next to the COWs' keyboard. The residents lean on the COWS as crutches - clinically and physically- they  are like security blankets, the computer provides the format for how they introduce a case and talk about a patient to the patient. 

    In Weber's prescient notion of the routinization of all things, to most doctors Cal is a file on a computer screen. I think they were too scared to see her as my anything else. I do understand that.

    There have been times over the last three weeks when I invited the young doctors to see Cal and learn from her to examine her themselves or just really see her.

    But, they are still learning to be doctors, uncertain about how to deal with the fierce, crazed mothers. The residents were exceedingly deferential to me, this began when an attending noted with a formal introduction that reminded me of giving a lecture at Harvard that Pat and I were parents who are "vocal advocates for their daughter" and "skilled at providing medical histories." This is code for pain in the asses.  I am a college professor, I taught these residents, and I understand that they are there to learn and impress the other doctors, not a heartsick parent .

    The attendings who had excelled in their residencies (like Dr. Hogan and Dr. Waldman) were the young residents and fellows who were asked to join the faculty and showed a gift for the technical mastery and ab ability to be with patients. Once a nurse chided me fo being so impatient with the residents, she reminded me how the great doctors here like Dr. Waldman were residents too, they must learn.

    So, in my generous moments, the professor in me scans the residents for the next Dr. Waldman or Dr. Hogan.  

    How I long for the residents to be wise enough to see what Cal can teach them .