So, allow me to tell you the story about Pyragraph. And my daughter’s sickness. Sorry, as much as I tried to figure out a way to separate these two stories, there is no way. So here goes. Grab a beer.
In the Beginning
Before Pyragraph was even a twinkle in my eye, I was a self-employed writer and editor with a few business books under my belt, a few plum clients (really, one in particular), two young kids, and a growing sense that I needed to make some changes in my career. I had never been particularly good at doing the “author” thing and promoting my own books, but the sale of my publisher in 2011 and the increasingly bleak outlook of the publishing industry inspired me to take self-promotion more seriously.
My focus as a consultant/coach and author has always been on small start-ups, both for-profits and nonprofits, and has always leaned towards creatives and community activists. For as long as I can remember, these have been my peeps.
I made a plan to better promote myself as an author and business start-up coach. I’d re-dedicate myself to my blog, teach more workshops, more actively pursue media coverage, offer more e-books and downloads, and just generally try to up my visibility and reputation. After having a baby boy in late 2009, my plan was to work a minimal amount through the baby year, focus on being a mom but do client work as much as necessary to bring home some funds, and pace myself towards full-time work when my son turned 3.
While my daughter continued her slow improvement, I roped in the folks whom I wanted to be on Team Pyragraph.
I’ve always been a bit of a procrastinator, so I was proud of myself for sticking with the plan and diving into daily blogging in early 2012, almost a year before my youngest would start pre-school. It felt great for my mom brain to re-engage with work! Ideas and projects were clicking and my writing was hitting a groove. I was still feeling out some opportunities and potential directions, and everything felt possible and rosy and bright.
Then my daughter got sick.
The Sickness and the Lightbulb Moment
One day in June of 2012, I noticed my daughter’s JK’s eyes looked yellow. I took my otherwise-always-healthy 6-year-old to the doc and a blood test showed she had hepatitis. As I learned then, “hepatitis” simply means your liver is inflamed. As for why, the culprit is usually a specific virus, like the Hep A virus (which pretty much always clears up without a problem) or Hep C virus (which tends to be chronic) or a list of other typical viruses. JK tested negative for everything. The doctors were concerned, but stumped, and said it was likely some unknown virus that would clear up on its own. So we waited.
So, instead of a triumphant march towards a glorious and successful career re-entry, and a wistful celebration of the end of the toddler era, the summer of 2012 was one of weekly blood tests and anxiety. My daughter’s liver was getting better, but not as fast as the doctors wanted to see. Instead of ramping up my client work I was stretched just to maintain what I had.
My daily blogging took the biggest hit which I found the most vexing because my blog was a cornerstone of my plan to re-boot my career. I had thought about using guest bloggers, but had always been reluctant to go that route. The discipline of regular blogging was hard for me, and if I allowed myself the crutch of guest bloggers I didn’t trust myself not to use them all the time.
Then one day in August 2012, it struck me: Why not use guest bloggers ALL the time? Why not make a magazine out of it? Why not formalize my long-informal focus on creatives, and create a publishing vehicle where creatives could share their experiences first-hand? Why not create a creative career resource for artists that’s written BY artists, not by consultants?
And that’s how Pyragraph was born.
More Sickness and Slogging…and a Launch
The more I thought about my idea for Pyragraph, and the more I talked about it with my trusted publishing contacts, the more I felt its promise. So while JK continued her slow improvement, I roped in the folks whom I wanted to be on Team Pyragraph. I drafted out an aggressive 2-month launch schedule and we all got to work. I sketched out a lean, mean business plan. My longtime friend and collaborator Dave Dabney built a mock-up of the site, and I entered a bunch of posts I’d commissioned from artist friends to get the ball rolling. We aimed to launch in November 2012.
Then in October JK’s hepatitis spiked again. We put the launch on hold, and I took her to the top-rated pediatric gastroenterology specialists in the country at Cincinnati Children’s hospital for a second opinion. We arrived in Cincinnati on Thanksgiving, and she was admitted within a few days. Like the doctors in New Mexico, the docs in Cincinnati could not identify what was causing her hepatitis. Their diagnosis was an unspecified form of autoimmune hepatitis that may have been triggered by a virus (viral triggers are implicated in many forms of autoimmune disease, I learned).
She was put on steroid therapy, in and out of the hospital for the next month and a half, and finally seemed to be turning the corner by early January. The docs released us back home to New Mexico, where she would continue to take medication and be monitored with weekly blood tests. The statistics were in her favor that the autoimmune episode would be isolated. The extensive, extensive testing they did while in Cincinnati showed no genetic predisposition or cause for any chronic autoimmune condition, so the doctors were optimistic that we were on the road to recovery.
I asked all Pyra-collaborators if they were up for “Operation Medical Crisis” which meant they had to be willing to carry on without me for an indefinite period of time.
When we got home in early January 2013, I had to decide: Launch or not? Not launching would put to waste all the work we had put into building Pyragraph. But worse, not launching seemed like a decision founded in pessimism and fear. The doctors said my daughter was going to get better. So, with my husband Turtle in agreement, I decided to vote for the future I wanted. We launched on Feburary 4, 2013.
The first three months of Pyragraph were a joyride. JK kept getting better, and our little sprout of a magazine grew better with each day’s new posts. We had a wild launch party with plate-smashing and belly dancers. I worked with new amazing contributors every week and felt that exhilarating sense we all search for: that I’m doing what I was meant to do. It was a damn fine 3 months.
The Launch Party
Not Part of the Plan
Less than 3 months after launch, on April 22, 2013 JK and I went back to Cincinnati for a follow-up liver biopsy. Her docs also wanted to do a bone marrow biopsy as her blood counts (white blood cells, red blood cells and platelets) had been dropping since mid-March.
The news, unfortunately, was bad: While the liver biopsy showed her liver to look just about perfect, the bone marrow biopsy showed marrow failure, specifically aplastic anemia (in her case, severe aplastic anemia). Whatever autoimmune agent had been attacking her liver had moved on to her bone marrow. Her stem cells in the marrow were at 5% (normal is 30-70%) and dropping, meaning that her body could no longer produce enough blood cells. It was a very serious life-threatening condition. She needed to be treated and admitted right away.
Statistically, the best treatment for aplastic anemia is a bone marrow transplant from a matched sibling, but her brother was not a match. A close second statistically is a treatment called ATG/Cyclosporine therapy, which is what JK got. The ATG part (anti-thymocyte globulin) is like a 10-day inpatient chemo which kills off most of your white blood cells, especially certain T-cells which are believed to be the ones that go “rogue” in aplastic anemia and attack your own body instead of viruses and other invaders like they’re supposed to. With the bad cells killed off (and a lot of good ones too), the remaining stem cells should slowly be able to regenerate. The Cyclosporine part of the treatment is an oral medication taken daily that regulates the production of new T-cells to prevent them from going rogue again. Patients are started on Cyclosporine on the first day of ATG, for a minimum of 6 months. Many patients are on it for a year or two.
Traumatic events are known to create disjointed memories in people who have gone through them, and my memories of those three months last summer are just that: disjointed, jumbled, and an odd combination of vivid and blurred. One crystal-clear memory is being on the phone in a hotel hallway, the night before my daughter would be admitted for her 10-day ATG therapy, and pulling the trigger on my “crisis mode” plan that had I had been brewing since the doctors delivered the news a few hours earlier.
Seriously people, show some love to your immune system. And do not Google “fungal brain infection.” You have been warned.
I called all Pyra-collaborators to ask if they were up for “Operation Medical Crisis” which, among other important details, meant they had to be willing to carry on without me for an indefinite period of time. My partner at the time Lex Gjurasic said she’d act as publisher and fill gaps on the business front. Thankfully we were well systematized, with written job descriptions, editorial workflow checklists, etc. Eva Avenue said she was up for keeping editorial running without me. I called an old friend Brendan Doherty who, despite already having a full-time corporate communications job, stepped up and said he’d help fill any gaps in editorial. Dave Dabney and Kyle Silfer said they’d keep technology costs to a minimum while making sure everything continued to run. Business consultant Mary Schmidt gave support and advice and helped keep me sane.
I called my husband Turtle who was home with our little son in New Mexico and he was up for it too.
When I hung up the phone that night I was ready to check into the hospital the next morning with as much optimism for Pyragraph as was possible for the situation I was in. Most importantly, my mind was freed to focus on my daughter for as long as it would take.
It took a long time.
Improvement and Homecoming
The treatment worked. Slowly. Stem cells like to take their sweet time, I learned. There were ups and downs. Readmissions. Platelet transfusions about once a week. Red blood cell transfusions every few weeks. A crazy number of medications to ward off fungal, bacterial and viral infections that healthy folks don’t need to worry about. For the first (and hopefully only) time in my life I had a true fear of brain-eating fungi.
(Seriously people, show some love to your immune system. And do not Google “fungal brain infection.” You have been warned.)
When JK was first discharged from the hospital in early May, we lived in total quarantine in an extended stay hotel for a whole month since she had no immune system to speak of. My dad came to stay with us so I could shop for groceries and pick up medications. There was very little improvement at the beginning, leading to a particularly scary readmission for another couple weeks, with a bone marrow transplant in the cards if she didn’t improve within one or two weeks. A matching donor had not been found, and swab kits were sent around the world to test cousins, aunts, uncles and other relatives. No one matched so options looked grim.
At last, in early June she started to improve (meaning her blood counts finally started to go up), and by mid-June she was out of the most severe danger zone. We were discharged and got the OK to move into the Ronald McDonald House across the street from the hospital. It was a much more supportive environment—mind-blowingly so, really—but unlike our extended stay hotel, the kitchens were communal so we had to be very, very careful about germs. JK hardly left the room.
At the beginning of the ATG treatment she had a PICC (peripherally inserted central catheter) line inserted into her arm which I needed to care for when we were discharged, so I learned all about saline flushes and hep locks, administering medication via mini-pump, and how to use an emergency kit if the line were damaged. Good times.
The re-engagement process—both with Pyragraph and with life—took a good long time.
In early July the docs said we could go to Milwaukee, where both my husband and I have lots of family. The hematologists at Cincinnati Children’s hospital had close relationships with the team at Children’s Hospital of Wisconsin, so they felt comfortable with us being there. It was excellent to have more freedom and family support, but it was still a really intense time filled with many, many doctor visits, transfusions, and more than a couple scares. JK still had to wear a face mask when going out and needed to stay away from any environments that might harbor funguses (damn, I never knew how scary funguses could be)—including just walking on grass, or being near a construction site.
By mid-July her stem cells had recovered enough that she no longer needed weekly platelet transfusions. Fucking glory be. Right around that time she was allowed to walk on the grass. In early August, we finally got the OK from the docs to come home to New Mexico. On our last day in Milwaukee, her PICC line was removed. We flew home to Albuquerque and our family was finally reunited.
The story since then is much simpler to tell: JK has fully recovered. I’m not sure if her status is technically “remission” or not since she is still on Cyclosporine, but her blood counts are now normal. Not low-normal, normal. She has caught a few viruses and even Strep throat, and her immune system worked like a charm. The docs say we’ll start weaning her off the Cyclosporine within a couple months, and continue weaning very slowly over a year or so to prevent a relapse. She’ll need another bone marrow biopsy in about 4 months.
Per the doctor’s orders we have been homeschooling her since August to minimize her exposure to germs, which she’s more vulnerable to while on this medication. Once flu season is over, say early April or so, JK is cleared to go back to school.
We feel incredibly lucky. We met many other kids and families at the hospital who are still struggling, and I think about them every single day.
Getting Back to “Normal” Chaos
Things are feeling more normal. My mental state is improving, and I no longer have to be in constant “mindful” mode to fight anxiety. As adept as I got at handling it, it is SO much nicer just to not feel anxious at all (most days at least).
Oh yeah, and through all this Pyragraph has been publishing every day.
I can never thank everyone enough, though I’ve tried. One person not mentioned earlier is Adam Rubinstein, who joined the team towards the end of Operation Medical Crisis and helped us start fresh in August which was desperately needed. He and Eva have been heroic with editorial. Sage Harrington was a total lifeline, helping Turtle take care of our son during my extended absence, while also writing great stuff for Pyragraph. And Lex Gjurasic deserves a second mention here because her friendship and support and phone calls and love throughout the toughest months were a huge reason I didn’t absolutely implode. (I’m leaving out a TON of family and friends here, as I’m trying to focus on Pyragraph. But we love you all.)
Operation Medical Crisis lasted the better part of May, June and July, but by the end of July I was ready to start getting re-engaged with the magazine. The re-engagement process—both with Pyragraph and with life—took a good long time. Most of August through November was a crazy game of catch-up: learning how to homeschool, paying overdue bills, re-integrating into the Pyragraph editorial workflow, more medical bills, continued doctor appointments, revamping Pyragraph’s business plan (which had largely gone out the window), doing our taxes (we had gotten an extension until October 15), more grappling with medical bills and insurance, rustling up more money for Pyragraph, etc. Did I mention medical bills?
Our families have helped us with money. Between the medical bills and being unable to work for months at a time, we needed the help. I’m hugely grateful for our amazing good fortune to have had this help. Many families in similar situations do not.
By this past December, I and the rest of the Pyra-team felt more or less stable and ready to look forward to a more “normal” level of start-up chaos for our young publication. It’s nice we hit this patch of breathing space just in time to celebrate our first birthday.
What Am I, Nuts?
If you think I’m crazy for sticking with Pyragraph through this life crisis I won’t say you’re wrong. It did feel kind of insane to continue pushing a start-up forward from a room in a pediatric bone marrow transplant unit.
Here’s the thing: I have never seen anything like Pyragraph before, I think it’s an exciting new model, and I deeply want to see it reach its potential. Creatives (whether self-employed or employees of other companies) are a huge, important force in today’s economy and culture, but there aren’t enough smart resources for them, in their voice—your and my voices—to support them and help them succeed. Artists, musicians, filmmakers and other creative types don’t typically seek out consultants for guidance, and even when they do, “professional” advice often doesn’t resonate with them about how they should pursue their careers.
But artists love hearing about how other artists make it work. Then they can pick and choose what sounds right for them. Piece together their own roadmap. We all know there’s no “right” way. Other artists understand that, and can give advice that is real. That’s what Pyragraph is all about. It’s artists learning from other artists. And being entertained along the way.
So forgive me it took that long, twisty story to get to the real point I wanted to make, which is why I think Pyragraph matters, and why it felt worth it to me to do my damndest to keep it going. I’m so incredibly glad for the minor miracle that it did indeed survive. (Kind of stunned, really.) Our team kept it alive, and so did our contributors and readers. All of you. Thank you from the bottom of my heart. Your support has kept us going through some very tough times, and we deeply hope you can continue supporting us in a smoother year ahead. Read, share, and contribute. Thanks for being part of our story, and we look forward to hearing about yours.
Allow me (again) to take this opportunity to encourage all of you to join the national bone marrow donation registry, Be The Match. My daughter was a week away from needing a bone marrow transplant and we still do not have a match. We are now optimistic she won’t need the transplant, but it is possible (i.e. if she relapses), and I learned that people of mixed ethnic ancestry are quite underrepresented in the donor registry. She is mostly Irish-Iranian and has a correspondingly unusual HLA profile. And there are lots of other kids and adults who need bone marrow transplants but don’t have a match; this is not a good place to be. So go swab your cheek, ok?