I don't think I had any sense of how powerful the weight of a shadow could be. For years we have lived with the Commander's illness; a viral sword of Sword of Damocles.
Nor could I have anticipated the toll the clinical trial could and would take. In some ways so benign - but a stark reminder of the stakes we have faced. It was also, coincidentally, a particularly rough time for Lala health wise and with what has become the unrelenting pain of her illness.
And then there was, and is the reality of creating a magical childhood when trying to work full-time and manage our precarious finances- all while spending many, many hours and days a month in medical centers, chasing down insurance waivers, reading research summaries, meeting with therapists, emailing doctors, administering and logging medications, and smiling over hidden tears at the bedside of one of my sick children. Or, the one thing that could make me lose hope, the soul sucking relentlessness of advocating for continued access to public education.
So, as I am prone to do - I focused on the good, turned on something to dance to, and tucked my fears away into the little nesting dolls of denial and sublimation that sit next to my heart - they are worn smooth with use and have served me well.
As I tucked them away I noticed the little box, to be unpacked at unknown date, that holds the grief and fatigue of having lost my spouse to a debilitating illness. A loss that sent me spiraling into an unknown and unanticipated world of being a single - and solo - parent.
A single mom. Something I had never entertained as a remote possibility. A lesson in impermanence.
I have learned to let go of so very much. Hands open - release.
Saying farewell to the illusion of health, stability, and having someone to share the seemingly impossible decisions that accompany loving and parenting chronically and seriously ill kids has been transformative. I am now a stranger in a strange land. My north star; to create a sense of scale and to dwarf these unfathomable moments with as much "normal" childhood magic and whimsy as possible.
I learned to be in the moments of healing and hope needed to get through the clinical trial - minute by minute, and breath by breath. To simultaneously, hold and comfort my child, as well as to hold the words of her doctor; warnings of a lifelong monitoring for carcinoma, cautions of compromised fertility, and the unknowns of a drug previously untested.
I learned to find light in the shadows - to focus only on the healing power of the love found in kissing soft peach-firm cheeks while sitting in a research phlebotomy station with heat packs warming the small arms of the sweet child sitting on my lap. With singular focus I imagined with each exhalation the transmission of the surety of my hope winging it way to the core of her soul and DNA to heal her forever. With each inhalation I drew illness from her.
Magic; an unmeasurable metric of a mother's hope.
So when you have a kid, or kids, you try to avoid those dark places where fear resides - and instead focus on snow cones, beaches, and sunny days. At least I did and for the most part I do. And then the shadows caught up with us in the form of errant biology and our path changed to include journeys into places unknown and unwanted. But, today I got fantastic news -- Sarah's treatment is working. Thank you all for the prayers, texts/calls/IMs/cards/calls/etc, meals, babysitting, support, and love - it has made this moment possible... This has been such a journey and this news makes the next nine weeks of treatment such a privilege. #hopewins
There is so much to write and say about being in this clinical trial and having access to a drug that suddenly pushes the horizon line of my child's endpoint to an appropriately and fantastically distant future.
I find comfort in data. The illusion of its logic offers solace.
Putting your nine year old daughter into a clinical trial for a drug that has never been tested on kids before requires comfort. And solace. And the illusion that *it* will all work out fine. Especially, when the condition that drug treats is life-threatening.
Two-hundred kids worldwide will be testing this drug over the next year or so; twenty here on the West Coast of the United States.
90% of the adults who took the drug in early clinical trials were cured. Cured of the fatigue and pain that my child experiences- and the other symptoms that await her. No one knows what the long term outcomes of this treatment are. But it clear what happens if the illness is not treated.
Five-hundred thousand people a year, globally, more than half the entire population of Delaware - die from this illness each year.
It is a condition that requires treatment.
Yet, there are no treatments approved and effective for the strain of the illness my daughter has.
Right now in the USA there are at the very least there are 23,000 children ages 0-18 years who have some version of this illness - that is basically the equivalent of one of every five people in Berkeley, California - suffering from a virus that can cause cancer and lead to liver failure. Most researchers believe the number to be closer to 50,000 children who suffer from this illness. Globally, the number of children who have this illness is in the hundreds of thousands.
Doctors have reassured me that liver transplant is a viable option, if, liver failure occurs before cancer.
Today, I signed on the dotted line to try a drug that has never been used on children and only tested on just over 1,000 adults.
Two-hundred kids on the planet will take part in a clinical trial to test a drug that is saving the lives of adults who have the same illness.
I am incredibly lucky. Like any parent I would do anything for my children. Like other parents I have prayed for a cure.
Up to forty-five percent of kids with this illness- clear it spontaneously. That did not happen for my daughter. Up to 85% of those people who don't clear the illness develop a chronic form of the illness, of these 30% will suffer from severe liver deterioration. My daughter's lab results indicate she is in that 30%.
Or as WHO describes it -
"A significant number of those who are chronically infected will develop liver cirrhosis or liver cancer."
Her strain of the illness does not respond to known treatments, but shows promise in the new drugs. Drugs available to 200 children across the globe.
Two hundred children. Two hundred of the the tens of thousands of infected children, each with loving parents who kiss rosy cheeks and stroke little brows daily, will leave the known world of medicine to explore the frontiers of hope.
The drug cost USA$1000USA per pill. So even if it were possible to find a way to get a prescription - its prohibitively expensive and hard to find.
It is predicted, that globally, 90% of all infected people could be cured with these new drugs - if they could afford them.
"Antiviral medicines can cure approximately 90% of persons, thereby reducing the risk of death from liver cancer and cirrhosis, but access to diagnosis and treatment is low."
It is estimated the 150 million people have this illness. That is just under one out of every two people in the United States.
A few months ago the World Health Organization (WHO) declared this drug an 'essential medicine" - those drugs that satisfy the health care needs of the majority of the population; they should therefore be available at all times in adequate amounts and in appropriate dosage forms, at a price the community can afford."
The median wage in 2015 in the USA for an individual was just over USA$26,000 - the GDP was roughly USA$50,000. To be cured of this illness - patients need to take pills for a minimum of 12 weeks- that is USA$84,000 worth of medication. Or... almost double the GDP in the USA. In India the same drug costs USA$990 for 12 weeks of treatment; there the GPD is USA$1500.
The drug is not approved for use in children. Insurance does not cover the drug. There are no patient assistance programs. There is hope and luck. There is being in the right place at the right time. There is winning the clinical trial lottery.
And there are moments like today - when you sign on the dotted line - when you weigh the odds and gamble.
When you turn to data to find warmth in the spaces between numerators and denominators.
I always wondered when we would "come out" with Sarah's illness. Unlike her sister's condition - Sarah's is hidden from sight. Unlike Lala's, Sarah's illness does not present with any florid or dramatic symptoms when you stare at anything other than her lab or ultra-sound results.
Unless you are "in-the-know" there would be no way of telling that she harbors an incurable virus of a particularly nasty genome type. A virus that could lead to liver failure and/or cancer - but before that occurs - can and does cause fatigue and pain and the other symptoms associated with chronic and progressive inflammation of her liver.
I keep thinking its "not really bad enough" to rally the troops, to make a big "to-do", to voluntarily assume the identity of a 'parent with sick kids'. Or to ask for even more help from family and friends - as I fear compassion fatigue.
I have done enough hours of therapy, meditation, yoga, and wooded trail runs to recognize denial when I see it; even when its my own.
Despite a life filled with hospital visits, specialty care consults, and more days of work and school missed to illness than I care to count, sleepless nights pouring over medical literature from the EU, I have not become "that mother" - the mom whose kids are "really sick".
Even though technically, I am.
I have steered our course through a combination of denial and becoming the woman who turned our home into the Mermaid Manor. The mermaid mama who wakes the kids daily with dance parties, who dons a tiara and glues glitter onto mermaid tails, who researches the science of "gratituding" and the immunological impacts of hope, and who has a steady stream of kids, dogs, friends, and community gathering around the dining room table for cobbled together meals and perpetual art projects.
There is glitter and paint on the table and some form of cardboard box Atlantis perpetually being built in the living room. As a former art therapist serving people with AIDS and cancer -health psychology has long been my schtick - I have seen firsthand the healing power of art and music.
Art and music - transform patients into people who surf on the waves of bliss and wellness found in creativity. I believe in the alchemy of art and music as much as I do in the anti-retrovirals drugs that will hopefully preserve my daughter's future.
I believe there is magic in choosing love and hope - and that it trumps illness and fear. I believe healing happens through art and music. I dose my loved ones regularly.
I am not someone who joins clubs or groups- and yet, I belong to two - two separate organizations for parents of children with rare and awful illnesses - one for each of my daughters. We swap clinical trial tales, arcane medical research findings, and form our tribes with rituals and norms defined by the rhythms of the rareness and cadence of out children's ailments. These rare and awful illnesses will not become or consume our family's, nor my daughters', identities, but they are an indisputable part of who we are and the paths we navigate.
We "came out" as family to embrace the healing power of music. Every morning- we have danced and sung our way through darkness to welcome the beauty of each new day. Sarah finds light in the music of Michael Franti. Last night, through the Do It For the Love Foundation, we entered the portals of "wishdom" and Sarah's wish to see Michael Franti perform live was granted- she met him backstage and danced on stage while he performed. She danced not as a patient, but as a kid who loves music and dreams of playing the saxophone in Paris.
Its this simple - music and art heal.
That is why we "came out" with Sarah' illness less than a week before the screening for a clinical trial that has canceled our holiday travel plans. We came out so that the Sarah could experience the magic of seeing a beloved beacon of light perform the songs she plays daily to counter the fatigue and pain she feels. As I watched her dancing- I saw a foreshadowing of the decades she will have, if this clinical trial works, dancing at the edges of stages experiencing the bliss of live music. She found magic in those bright-eyed moments of joy in sharing the healing power of music.
I was able, at long last, to assume the grace needed to ask for help and to don the identity of my reality- a mermaid mama with two sick kids. I don't know if this clinical trial will work- no one does. These drugs have never been used in kids before. I do know that we will find joy in the music and art that lifts our spirits no matter what.
And now is the time to let the beautiful community that surrounds us hold us in the light and love so freely and often offered.