Coming Out

Following what might be the shortest winter in local history, we are enjoying unseasonably warm and sunny weather. Signs of spring are everywhere and we hope that they will persevere without dipping back into a gray and dismal winter. So it is with Mallory’s treatment. We are enjoying good health, robust hair growth, a sunny disposition and hope that this is here to stay. As the one-year anniversary of Mallory’s diagnosis looms, each day brings the promise of continued success or the emergence of some terrifying unknown. . . .

The onset of the maintenance phase of chemotherapy has brought an end to the most difficult side effects. Mallory’s complex medical regimen has gone remarkably smoothly, with only minor problems remaining. One is persistent dermatitis: splotchy, red welts on Mallory’s face, the price of taking regular doses of Methotrexate and Mercaptopurine (AKA: 6MP). It’s neither painful, nor scarring, but is an ever-present reminder of the voluminous amounts of poison she ingests, week in and week out. Today she exhibited sudden signs of stammering—something we remember from her induction phase, her month on Dexamethasone. Although infrequent and temporary, the stammering is a bit unsettling; however, other side effects include an exuberant affect and a ravenous appetite. Bad with the good, I suppose.

Mallory now takes daily oral meds, some weekly, and others monthly. Our hospital visits are down to only once per month, just to check in with the oncologist, or her physician’s assistant, and a quick “push” of Vincristine through her line in the Infusion Center. Once every 90 days, there’s still a lumbar puncture during which she gets an intrathecal injection of Methotrexate, and lab technicians search her concentrated blood samples for lurking leukemia cells. To save trips down south, we’re still having blood drawn at the Comprehensive Blood and Cancer Center here in town. Our last visit revealed that Mallory’s ANC (absolute neutrophil count) had plummeted to 40, which is severe neutropenia and is much closer to zero than you want to get. Essentially that means she has no functioning immune system. Upon receiving the report, our doctor telephoned and ordered us to cease all medications until her counts rose to a safe level.

Missing doses, we were told, puts Mallory at risk of relapse; however, her powerful chemo meds pose a real danger if her body won’t tolerate them. It seems Mallory is more sensitive to the medicine or current dose as it is right now. As one week became two, then three, each night we slept fitfully, balanced on the horns of this dilemma. Our doctor repeatedly assured us that the cessation of therapy is normal in the maintenance phase and that it takes time to get the meds dialed in to the delicate balance required. Still, we were anxious. Our medical knowledge is highly porous and fear tends to fill in the voluminous gaps. Subsequent weekly blood tests revealed a stubborn ANC level that climbed gradually, glacially. Eventually, it rose to a robust 2,000—well into the safe range—and the doctor resumed Mallory’s meds at 50% doses.

Given our anxiety and all the phone- and email-consultations, we were looking forward to our scheduled visit to CHLA last Friday. We had appointments for an oncology consult and the Infusion Center. Because this visit was not count-dependent, we didn’t bother with a local blood draw. We arrived an hour early to get a sample. Once in Hematology, we were greeted by one of our favorite nurses, Andrea, who worked with us during Mallory’s initial hospitalization. Our old friend deftly accessed Mallory’s port without incident, and drew an extra sample for a test that checks for a number of potential genetic mutations. We were advised that the results of this test will help doctors to dial in the meds to the perfect dose. With needle taped to her chest, Mallory then performed a series of pirouettes to an assembly of appreciative nurses, and we danced our way up to Oncology. Our physician’s assistant, Lauren, greeted us warmly and examined Mallory. She reported that Mallory looked wonderful and seemed to be doing remarkably well. She answered each question and reassured us that it is safe to take Mallory out into the world—something that still makes us quite nervous. Following our consult, we made a quick detour to the Infusion Center for a push of Vincristine. At 1:30, we were done with our short, pleasant visit. Because Lauren had reassured us that it is safe to take Mallory out, we took a sunny, short stroll up to Hollywood Blvd. and a nearby café, Home State. We enjoyed savory gourmet tacos on scrumptious, handmade flour tortillas. It was a perfect spring afternoon.

The early trip home was busier than we would have expected, but it was smooth and easy—even the Grapevine seemed less treacherous than usual. As always, our day was possible because Grandma Sherry had kept Donovan overnight, fed him, bathed him, made him lunch, drove him to school, and picked him up. We arrived home at 4:30, just in time to enjoy a quiet evening at home, grateful for Grandma’s love, the smooth journey, and Mallory’s excellent medical report.

Israel and I recently had an opportunity to celebrate Mallory’s good health with a rare night out. Second Star to the Right hosted a masquerade ball to raise funds to assist families coping with diagnoses of pediatric cancer. Held at the Seven Oaks Country Club, it was a fun evening of wine and song. Our friends David Tate and Leo Villanueva gave touching testimonies about their families’ experiences with their children’s diagnoses. Kevin Charette, local meteorologist with his own cancer foundation, was master of ceremonies and helped a bona-fide auctioneer to raise an impressive sum from the assembled masked revelers. David, Leo, Theo, and I (all dads) helped wrangle bidders during the auction to make certain no bids were missed. By all accounts everyone had a wonderful time and an impressive sum of money was raised to help local families.

We recently received an invitation to help local families in another, more direct way. Another envelope from Dignity Health arrived, this one an invitation to join a patient advisory board for the Infusion Center at CBCC. We agreed to meet for a group interview, which took place last Monday. There were several people there, current and former patients. Everyone was pleasant as we discussed our reasons for wanting to join, the work of the panel, and a future orientation. There seems to be a desire to provide service to children, but we’re unconvinced that there’s a sufficient number of kids to support the specialized infrastructure. Nearly everyone we know travels to the children’s hospital in L.A. or Madera. We’ll wait to hear back from them. If they want us, it would be a good opportunity to advocate for families dealing with pediatric cancer.

Advocating for our own family, and trying to follow doctor’s orders, today was one of our first trips out of the house as a family, a sort of coming-out for Mallory. As we had promised them, we took the kids to the central library downtown. Donovan and Mallory were both excited to get library cards and each checked out a stack of books to take home. As the sun set, we stopped at a local Italian restaurant to enjoy a pizza and then swung by Dewar’s for a bit of ice cream. Iz and I kept stealing glances at each other, marveling at how wonderful it was to be doing something so normal with our little family. It was a thoroughly enjoyable evening of simple pleasures. Mallory seems to be coming out of the isolation of her illness and that frees us all.

Giving Thanks. . . .

The year 2015 finished with the seasons for giving thanks, and, for the last two months, more than anything else, we were feeling grateful. In October, Mallory’s doctor green-lighted her to go trick-or-treating, and since then, she’s been doing great. She seems puny, but her hair is starting to grow back—robust growth that signals hope. She feels well most of the time, running around the house playing tag with her brother. She has a finicky appetite, appropriate for a three year-old, but what she likes, she devours. When the doorbell rings, she races to see who it is. Friends and family have been so good to us. One friend stopped by with more than one-hundred hand-made get-well cards from local school children. Other friends sent Mallory a princess Halloween costume. Another periodically sends messages of hope, sometimes with gift cards or money for ice cream, the universal medicine. Grandma Sherry regularly watches Mallory so Israel can leave the house to run errands, and she has Donovan overnight so that we can leave for the hospital in the wee hours on our CHLA days. When it comes to the love of friends and family, we are wealthy beyond measure and grateful to our core.

Mallory’s chemo regimen was slated to last for two and one-half years. The first six months (which stretched out to nine) was an intensive period of several distinct phases. In Interim Maintenance I, she was given increasing doses of chemo every ten days. She suffered a number of set-backs and delays due to side-effects and was seriously ill a number of times. Delayed Intensification was even worse, the side-effects of which were so extreme, she was airlifted several times to the hospital. The final phase of intensive therapy was Interim Maintenance II, and much to our surprise, she sailed through without so much as a hiccup. Shortly before Christmas, we began the second major phase, Maintenance. We awoke at 2:30 a.m. to make a 6:00 a.m. check in for yet another LP. Following surgery, we met with Mallory’s oncologist and nurse practitioner. Each explained that during this period our hospital visits will be only once per month instead of the usual once a week. During each visit, she’ll be given an IV infusion of Vincristine. At home, for the next year and one-half, she will be taking a complex regimen of daily oral meds:

• Mercaptopurine (aka 6MP) every night, avoiding any dairy within hours of administration—no milk, no ice cream, no nothin’.
• Methotrexate every Friday, except on LP days, when she receives the dose intrathecally.
• Dexamethosone twice a day for five days each month, following her infusion of Vincristine.

Israel and I expressed cautious optimisim that we could follow these instructions. Our nurse practitioner leaned forward with sober resignation: “If you miss two or three administrations of the Methotrexate, you increase the chances of leukemia returning by three or four times.” On the bright side, we have a completion date: June 2017. We are elated.

Our experience with CHLA has been remarkably smooth. Our experience with local medical care has been more challenging. A recent blog post featured a litany of complaints we had with our local hospital following several visits to their ER. I contacted them and shared our concerns. They responded with a certified letter pledging to investigate. After several weeks, there followed a second, certified letter listing their findings. The letter detailed the training regarding procedures related to room assignment, accessing a port, sterilizing central lines, isolation precautions, infusion pumps, and plan of care. We were pleased to see that training targeted how to capitalize on in-house pediatric expertise when a young child presents in the ER. Together with this detailed action-plan came a sincere apology. We’re grateful that they found our complaints not only credible but worth providing training to prevent problems for future patients. We’re feeling a great deal more confident that we’ll receive the care we need when we next visit the ER. We’re clear on what to ask for and whom we should request if the need arises. Memorial Hospital exhibited the highest degree of professionalism in response to our concerns. We are grateful.

Our resolution with Memorial Hospital and Mallory’s recent spate of good health allowed us to look forward to our holidays. The kids really enjoyed Halloween. Our family even participated in the Leukemia and Lymphoma Society’s “Light the Night Walk” this year. Mallory was one of hundreds of survivors who participated; however, an equal number were memorialized. We had a lovely Thanksgiving with our family in Bakersfield. Mallory and Donovan adore their Grandma Sherry, Aunty Dione, and cousins Derian and Zachary. Grandma Cindi, Papa Chuck, Lindsey and the kids came to visit in October and, again, Mallory and Donovan couldn’t get enough of them. It’s been a season of family and we’re so grateful to have them around. Once Tom finished with final exams, Christmas was in full swing. We got a nice tree, and we decorated the house furiously. The kids love the holiday and were thrilled to see what Santa brought.

In addition to our own families, we have other families here in Bakersfield to which we belong. One, Second Star to the Right, is a wonderful organization that provides outreach and support to families struggling with pediatric cancer. Norris Elementary School is another family to us. They have been so wonderful with Donovan and so caring and concerned for Mallory, even though she is not yet a student there. Second Star to the Right partners with Norris every year and adopts families for the holidays. Students and their families give to Bakersfield families beset with the struggles of pediatric cancer. This year, one of the classes that adopted our family was Donovan’s second grade class. Each week his teachers sent home notes to parents soliciting gifts for a “wonderful family” with a daughter named Mallory and her big brother. Families were asked to send presents in lieu of the customary Christmas book exchange between students. Donovan’s selfless team-teachers even asked parents not to send gifts to them, instead sending them for our family. At Second Star’s urging, we went to the school Thursday when the gifts were collected. Like a parade, class after class marched to a trailer, each child carrying one or more brightly wrapped gifts for our family and others. We were overwhelmed by the outpouring of generosity and found it to be as heartwarming as it was humbling. We’ve never experienced the like. Donovan seemed very pleased that we were there and proudly squired his sister around the area introducing her to his classmates.

For all our gratitude, our happiness is tempered with genuine heartache. Since Mallory’s diagnosis last March, there have been six children—in Bakersfield—who have lost their battle with cancer. In just the past month, two more children are gone. One more, the newborn child of a former student, was unable to overcome the complications of his birth. Up until this year, our family had been shielded from this—we never had to face this unfathomable loss or even see it. We knew it was there, but we didn’t know how it affected families, and how very many people are suffering the unimaginable agony of letting go of their precious children. Our journey has been ever so much easier. Not easy, by any means, but usual, predictable, the way the doctors said it would be. She’ll get sick: yes. She’ll lose her hair: yes. You’ll make trips to the hospital: check. You’ll be Life-Flighted: twice. But each night, nearly every one of which has been in our home, we tuck Mallory in after she bids Donovan, me, and Mama good night. How our hearts grieve for the families whose journey was halted. The parents, siblings, grandparents, school friends, neighbors—all shattered. This ugly, horrible disease is cruel and relentless. During this season of gratitude, if you’re inclined to pray, pray for these families. If you’re inclined to give, give to stop cancer before it stops more children.

We grieve for these families. We celebrate our good fortune. We move forward with cautious optimism, disquieted by the absolute realization that it can all change in an instant. It is our hope that Mallory has emerged from a long, cold winter and is about to embark on an extended springtime of renewal.

Those Who Follow In Our Wake

The responses to my tirade on Memorial Hospital ranged from “call me” to “request a PICU nurse” to “file a complaint with the OIG.” I’ve taken all of these to heart and intend to act on each of them; however, the final advice regarding the OIG led me to contact Memorial. On Sunday, after failing to find entry through their opaque website, I resorted to the “contact us” page and wrote a simple note: We had a deeply troubling experience in the ER and that I was considering filing a complaint with their accrediting agency. I noted that I thought it only fair that I bring the complaint to their attention first and that if someone wanted to discuss it with me, they could call or email.

The following Tuesday, my phone rang. It was the director of professional nursing and the interim director of the ER. She seemed very interested in what I had to say. We spoke for 30 minutes—most of that me—and I regaled her with stories of our several visits, focusing on the most recent and troubling. A good listener, she was appropriately appalled at the details, and offered to meet with us in person. We agreed that the goal was to improve our experience on future visits and to improve conditions for oncology patients who follow us. Friends affiliated with the hospital told me they heard about our complaint in the following days. I followed up by sending her my most recent blog post. Yesterday, just as I was wondering what follow-up, if any, that I would receive, our postal worker delivered a certified letter from Dignity Health. In it they assured me that they had launched an investigation into my complaints and that I should expect to hear from them at its conclusion. They cautioned that due to the “complex nature” of my complaints that the investigation would take longer than the customary seven days. We will reserve judgment until their investigation is concluded, but we are encouraged that they are looking into our complaints with same gravity with which we expressed them. Stay tuned. . . .

Following our visit to Memorial and Mallory’s subsequent two-day stay at CHLA, life has returned to normal—certainly a subjective and relative term. We enjoyed a short but sweet visit from Grandma Cindi and Papa Chuck, Israel’s dad and step-mom. They very much enjoyed seeing Donovan and Mallory. Mallory’s Aunty and cousins were here, too, but the little ones had a good case of the sniffles and so could not visit Mallory. They had driven a long way for a short visit, so this was naturally very disappointing, but such is life when undergoing chemotherapy.

Shortly after our visit, it was time for Mallory’s delayed resumption of chemotherapy. We were set to begin the final phase of her introductory chemotherapy, Interim Maintenance II. When Mallory was initially diagnosed, doctors explained that she was in for two and one-half years of chemotherapy. They explained that the first six months would be the hardest, comprised of multiple different phases: Induction, Interim Maintenance, Delayed Intensification and others. We were warned that Induction would be the worst, but we found that Delayed Intensification was our dragon to slay. In the end, her introductory six months will have lasted nine months, finishing up shortly before Christmas.

On Monday, October 19th, following the horrendous mudslides that had closed all access to LA, we finally made our way down to CHLA. Everyone knew who we were, the family that had to cancel their surgical procedure due to weather. We made our way to the Ambulatory Surgery Center for what has become an unnervingly routine procedure. Mallory’s port was accessed quickly and easily, blood drawn and analyzed. Her ANC level was a robust 2,700 and we were all set for the procedure, specifically a lumbar puncture. Each time Mallory has an LP, there is a two-pronged goal: search for lurking leukemia cells and administer an intrathecal injection of Methotrexate. As usual, Mallory fought the Propofal as Mom delivered earnest kisses, I snapped pictures and held her hand. As she finally succumbed, gowned nurses and an anesthesiologist wheeled her through the double doors and we were left holding a slip of paper with her flight number.

No sooner had we each consumed a poppyseed muffin, they came to get us. We sat in recovery for what seemed only minutes before Mallory sat bolt upright. She was fully awake and ready to go. We went upstairs to visit with her oncologist, Dr. Baskin and her nurse practitioner, Lauren. We discussed our concerns with local emergency medicine and they promised to look into alternatives for us. We talked about Mallory’s prognosis. They indicated that at this point in her journey, she has a 90 – 95% chance of a complete recovery—or as complete as leukemia recovery gets. Her odds were good when we started, but these numbers were even better. We were, of course, elated by this news. Following our visit, we headed to the Infusion Center for some Vincristine and more Methotrexate, both administered by IV. It was a smooth visit, with no complications, but we were there for 10 hours. We made it home safe and sound and tired.

This round requires visits every ten days, so on October 30th, we returned. I managed to convince Mom to stay home and rest. I had nothing on my calendar, so I took Mallory on this Friday visit. It was another smooth journey, on the road by 5:30 a.m. We arrived to find the Infusion Center festooned with jack o’ lanterns and ghosts. The nurses were all dressed as M&Ms, the universal candy “medicine.” We were seen quickly and escorted to a part of the IC we’d never visited. Each cubicle had beds. Mallory made herself comfortable and was accessed with only a yelp. Soon saline was flowing; the toxicity of the medications she receives requires a bolus, a chaser of sorts. She also received a preemptive dose of Zofran, the miracle anti-nausea medication, a small bottle of which costs $1,300.00 for the uninsured. As the medication pulsed through the infusion pump, I recalled a recent NPR interview with Dr. Vincent DeVita, author of the soon-to-be-released The Death of Cancer.

Dr. DeVita was one of the pioneering oncologists who, in the 1960s, developed the combination therapy that Mallory is currently undergoing. This was the dawn of an era when children began to survive Leukemia. He mentioned that the then-experimental regimen was developed prior to the invention of anti-nausea medications, and the side-effects were horrific. Because he administered the chemo, patients so closely associated him with the extreme nausea that accompanied the cytotoxic medications that they would vomit at the sight of him—an almost Pavlovian response. Mallory’s journey so far has been difficult, but it pales in comparison to the children who preceded her, whose suffering has smoothed the wake in which we drift. During her lifetime, others will look back on Mallory’s voyage as turbulent, treacherous in comparison to the advances that lie on the horizon, just out of our reach.

While the pharmacy readied her meds, Mallory was treated to reverse trick or treating during which staff members visited her bedside with gifts and candies. They really went all out to see that their kids had a happy Halloween. After administration of Vincristine and a higher dose of Methotrexate, we were soon ready to leave. On the way out, Mallory met Bert the Wonder Dog, one of the service animals who visit with and comfort patients in the hospital. Mallory drew a great deal of attention in her Mini-Mouse outfit and her My Little Pony baseball cap, complete with synthetic rainbow ponytail. There were more gifts and candies as we struggled to make our way to the lobby. As we emerged from the elevator on the first floor, we were greeted by a parade of costumed staff members: Cinderalla, Snow White, Shrek, you name it and they were there. Mallory soon grasped Elsa’s hand, who enjoined Mallory to dance. Mallory turned uncharacteristically shy, but near the end of the song “Let It Go,” playing from an unseen phone, Mallory joined in for a big finish much to the acclaim of the assembled revelers.

Two dear friends recently sent Mallory a gift, a Princess Elsa dress. No sooner had she opened it than we realized this was to be her Halloween costume. Mallory and Donovan were so excited to go trick or treating, especially with each other. Mom and Grandma Sherry took them around the neighborhood while I stayed behind to feed the hungry ghouls and goblins. It was a wonderful evening and we were so grateful that her treatment or some covert fever didn’t sideline yet another milestone.

Mallory has been doing very well these past few weeks. As her visits progress and her chemo increases, we anticipate that she will crash, and may even spike a fever. We hope to keep her out of the hospital. Her first round of Interim Maintenance was not without delays, but not too extreme. This one features notably higher doses, so we keep our fingers crossed and remain vigilant in her care.

We thank you, as always, for your interest, your well-wishes, positive vibes, and your many, many prayers. They envelop us in bright, healing energy and the comfort of your friendship.

Mayhem and Mudslides

After a short 48 hours in the hospital, Mallory is back home and seems to be fine. Israel and I are wrung out and tired of doctors, hospitals, and cancer. We’re starting to rethink all the precautions that we are supposed to be observing. We find ourselves dealing with competing threats and, although we have no formal medical training, we are compelled to decide which threat is greatest: acute lymphoblastic leukemia or Bakersfield emergency medicine.

A week ago, Tuesday, like most mornings, Mallory climbed in to our bed. As we began to awaken, Mom remarked that Mallory felt very warm. I got up and took her temperature: 102.5º. In accordance with our directive, which is to call when her temperature is above 100.4º, I phoned Oncology at CHLA. The on-call doctor recognized my name and remembered that we live in Bakersfield. He told me to transport Mallory to the ER right away. I didn’t argue with him, as the result is always the same: although local medical care is abysmal, it is too dangerous to transport Mallory by car, hours and miles from emergency care.

While Israel remained home to pack a bag, I drove Mallory to Memorial Hospital. The reception nurse recognized us immediately, handed me the admitting paperwork and told me to wait outside, away from the army of sick people that had annexed the waiting area. Shortly after, she appeared outside to take Mallory’s vitals. Her own kids visit Kaiser in Hollywood and so feels an affinity with us. Mallory’s temp had gone down to just over 100º, near normal.

Great, I thought. Here’s eight hours of my life that I’m never going to get back.

She escorted us into a private waiting room while we waited for an isolation room to become available. An overly-friendly nurse in her 60s soon appeared to draw Mallory’s blood. I told her she had a port and that I wanted her accessed and blood drawn through her port.

“You want to do that?’ she grumbled.

Yes, I thought. That’s why we had it surgically implanted. That’s why I bothered to anesthetize it with Lidocaine before leaving the house. If she’s going to be speared, I want it to be only once. That’s why I asked you to access her port. Yes, that’s what I want to do.

“Oh. I’ll have to get someone who knows how to do that,” she muttered as she walked away.

Twenty minutes later, she appeared to bring us to our room. I gathered Mallory, her blankets, and two backpacks and followed her to a curtained cubicle. I told her that we needed an isolation room, the reason we were alone in the small waiting area. We returned to the waiting room.

Thirty minutes later, a candy-striper, who appeared to be 16, showed up offering to take us to our room.

“Is it an isolation room?” I inquired.

“I don’t know. It has a door,” she ventured.

“That sounds promising,” I said. “Let’s take a look.”

As promised, a room with a door, which I recognized as what passes for an isolation room at Memorial Hospital. There was an industrial-sized sharps container in the room (still), used medical implements on unknown purpose in the sink, and a number of surplus instruments laying around the room. We sat down and waited.

Soon the candy-striper, who as it turns out was actually a nurse, accompanied by an equally young nurse, both wide-eyed and unsure of themselves, entered the room. Time to draw a blood sample. At CHLA, Mallory is always greeted by a single nurse who calmly and deftly accesses her port. This never happens at Memorial. The two young nurses, now joined by a third, hovered worriedly over Mallory, whose anxiety level soon shot through the roof. She refused to allow them to remove her shirt, so I stepped in to do so and to remove the sterile barrier over her Lidocaine. I was then told to hold down Mallory who was now whimpering. I told the nurse that I had just the right needle, a 0.75-inch, 20-guage butterfly needle, but she refused it, preferring her own. As I held Mallory’s arms, the nurse began to feel around her port, consulting with her fellow teenager, “Is this the right place?” She tentatively placed the needle and Mallory began screaming. She attached a syringe without properly sanitizing the line. She was unable to draw blood. She flushed with saline, drew again, nothing. She removed and replaced the needle, again sanitizing with a single swipe, Mallory all the while screaming for her mother. Finally, one of the teenagers ran from the room to get someone who knew what she was doing. When she appeared, I thrust my packaged needle into her hand and growled, “Use this—please!” The teenaged nurse said she had another needle, but I pointed out that it was the wrong size, too short to reach its target. The more experienced nurse agreed and placed the needle I provided swiftly. There was still no blood drawing, Mallory was still screaming, and I had begun to cry.

How can this be happening? How can the entire emergency staff at one hospital be so utterly incompetent?

After blood began to flow and samples were drawn, Mallory and I—both thoroughly traumatized—were left to recover. Not long after, one of the teenagers appeared offering to catheterize Mallory for a urine sample. I assured her that was not happening. We would draw our own sample. Israel soon arrived, and using a collection bowl and a portable commode, gathered a sample. As she cleaned Mallory, I poured 90% of the sample into the sterile sample bottle. Israel summoned the nurse who promptly returned, took the hat from the commode and left. We looked at each other, dumbfounded. While I was wondering why she would clean the toilet prior to submitting the sample, Israel ran out and got her. She returned, laughing, that she had overlooked the sterile sample bottle and was trying to gather a sample from the thin film of urine that remained in the collection bowl. We shook our heads in disbelief.

An hour or so later, both nurses reappeared with an antibiotic. They appeared to be teacher and student, but it was impossible to determine which was which. They puzzled over the diffusion device and Mallory’s line, but they soon had it set and the infusion began. I just prayed that whatever was in the syringe was the right medicine.

Beep. Beep. Beep.

Iz and I wondered, “What now?” We summoned the nurse (teacher or student) and she considered the beeping the device. Soon she discovered the problem and playfully slapped Israel on the arm as she snorted, “I forgot to unclip her line.” For five minutes, pressure built up in the syringe and line—the line that leads directly to Mallory’s heart. Without a second thought or assessment of the ramifications of her decision, she reached over and unclipped the line. Stunned, I held my breath and watched Mallory. I was relieved and amazed that nothing seemed to happen.

In spite of Mallory’s severe neutropenia (her ANC was .1) no one ever gowned up or wore a mask when treating her. It’s as though no one at Memorial understands cancer or blood chemistry.

In the remaining hours, we waited for transport to CHLA. We were told that Mallory would be airlifted, but as time went on, that changed to ambulance. We were told it would arrive within the hour. Two hours later, when we inquired about the ETA, we were told that “Bakersfield had blown up,” and that it would be here within the hour.

When they finally arrived, the paramedics asked if Mallory had a mask. In eight hours, the only person to don a mask was Mallory—and we found it necessary to provide our own. Although Memorial Hospital is Kern County’s designated emergency pediatric center, they didn’t have child-sized sterile masks. Once discharged, Israel and Mallory were in for a bumpy, two-hour trip over the Grapevine. I stayed home to take care of Donovan and go to work.

During their stay at CHLA, Mallory was evaluated but found to be afebrile, with no apparent source of infection. They kept her for two days until her numbers rose to a safe level. During her stay, she was mostly free of IVs and could roam the halls freely, visit the playroom, and she even made friends with another patient, a lovely young girl named Delilah. Mallory captured the hearts of the entire nursing staff, apparently, because when I drove down to retrieve them, all the nurses gathered to say farewell. One evening, three nurses came in to serenade Mallory with Disney songs. She eventually climbed out of bed to lead the nurses in a song of her own invention. I’m grateful that Iz had the presence of mind to capture this on video. Sorry, but you’ll have to cut and paste this. For reasons unclear to me, this site won’t read Youtube’s embed code.

Mallory’s hospital stay coincided with her scheduled surgical procedure and chemo infusion, so that had to be postponed. She was set to begin Interim Maintenance II, the final stage of chemo before settling in for two years of Maintenance. That’s still two more years of chemo, but should be a little more predictable with less-frequent visits. She’s not out of the woods yet, and will likely have more hospitalizations, but all indications are that we are through the worst of it.

Israel managed to reschedule Mallory’s procedure for Friday so I could accompany them without missing classes; however, on Thursday, a thousand-year storm hit Central California and in 30 minutes dumped a couple of inches of water on the drought-parched hillsides of the 5 freeway. The result was a massive mudslide that closed all north- and south-bound lanes. Highway 58, the most probable detour for the 5, was also hit with a mudslide and it is shut down for a week. Caltrans promised that one southbound lane was open on the 5, so we awoke at 2:00 a.m. on Friday to try to make a 7:00 a.m. arrival. Unfortunately, our information was bad, and we reached a dead-end at the base of the Grapevine. We flipped a u-turn in the middle of the freeway and headed north. The CHP advised us that Hwy 46 through San Luis Obispo to Hwy 101 was the only alternative to LA. Against their advice, we tried the 166, but it was flooded. Under ideal conditions, the Hwy 46 detour would be a five-hour drive, but who knew what the closure of the 5 would portend for that detour? We headed in that direction but were soon shut down by fog—near zero visibility. At that point, I phoned the surgery center to let them know we wouldn’t make it. We arrived home at 5:30 a.m. and went back to bed.

Our appointment was moved to Monday. We’re going to head down Sunday night and stay in a hotel just to make sure we’re not blocked again. Delays are normal in chemo, but you can only put the next phase off for so long. We’re hoping for blue skies, clear roads, and no leukemia cells. Israel is consulting with some local physicians and we are going to have a frank discussion with Mallory’s oncologist about what to do next time she spikes a fever. I don’t know what that answer is, but I do know that we won’t return to Memorial Hospital. I’ll take my chances with the Grapevine.

Delayed Intensification Part 2

Continued from Part 1. . . .

During both of her hospitalizations, we were of course consumed by worry about Mallory, but another issue weighed heavily on our hearts: Donovan’s birthday was on the Saturday that we were in the hospital. We had planned a big sleep-over with some of his friends and it all had to be cancelled. I was able to talk about it with Donovan; he was bummed but he understood. While Iz, Mallory, and I were in the hospital, I mentioned Donovan’s missed birthday on Facebook. While I simply wanted to mark its passing and express regret at missing it, our family and friends rose up and embraced the cause. Friends went to buy gifts and deliver them to Donovan. A dozen or more posted Donovan’s birthday on their pages and he received hundreds of well wishes. His Grandma Sherry, Aunty Dione, and cousins Derian, Zachary, Jeff, Terri, and Sydney all came together to celebrate his birthday at John’s Incredible Pizza, which Donovan now proclaims is his new favorite place. Though we had no choice in the matter, we felt like lousy parents. We were so appreciative of everyone’s efforts and well wishes. We are so grateful for our many friends and supporters.

One other milestone occurred following this hospitalization: Mallory finally lost her hair. We had been expecting a gradual balding, characterized by hair on the pillow or in the drain. Instead, her hair simply exploded. Mom put it up in a bun after checking into the hospital. Clumps began to fall, and soon only the bun was left—and it was a matted knot not to be undone. Thankfully, Mom worked with Mallory, gently and gradually, using a bald Barbie (or rather, disappointingly, Barbie’s friend) to get her used to the idea. By the time they came home, Aunty Dione was ready with her pro clippers and she made short work of it. Mallory is as beautiful as ever. I even joined in the fun. No one notices a bald guy in his 50s. You can’t throw a rock without hitting one; still, I feel a sense of solidarity with Mallory.

Because of her multiple hospitalizations, Mallory’s chemotherapy was delayed several times. Delays are common, but schedules are rigid. There’s only so much delay that can be allowed. We were about a week past what we were told was the outer envelope. The day for Mallory’s final chemo of the current phase was scheduled. As usual, we planned to wake up at about 3:30 a.m. for an early check-in for surgery; however, Mallory had other ideas and woke us at just after 2:00 a.m. We got up and readied for our trip. As we were getting ready, we noticed that Mallory had a fever and a runny nose. Her temps were 100º – 100.6º. While not terribly high, we’re supposed to call the doctor if it’s above 100.4º. I made the executive decision not to call for fear that they would cancel our treatment, or worse, direct us to the local ER. Thermometer in hand, we climbed in the car and headed south.

When we arrived at the surgery center, they inquired about Mallory’s birthdate, changes in medication, and whether she had had any fevers. “She’s got one right now,” I said. Wide-eyed, the nurse said, “Now?” I confirmed and said that I wanted the anesthesiologist to take a look at her. Ultimately, the doctor would decide to cancel or proceed with the procedure. We had been through this before and I felt confidently that the doctor would give Mallory the OK. After several temperature readings, and examinations by nurse practitioners, doctors, and anesthesiologists, we were, indeed, cleared to go ahead. Mallory has had well more than a dozen lumbar punctures so far, each of which is a search and destroy mission for lurking leukemia cells. With each sample drawn, Mallory is given an intrathecal injection of Methotrexate. As fearsome as it sounds, it has become routine. Even Mallory seems to shrug it off. As in the past, following her procedure, Mallory dozed for about an hour, then woke up demanding a popsicle. As she slurped that frozen treat, we made our way to the Infusion Center.

Next was her monster six-hour infusion. She was scheduled to take a medicine so poisonous that it must be preceded by and followed with two-hour infusions of water. We spent six hours in the IC, comforting Mallory, letting her snooze, grabbing a snack, and monitoring emails. As we neared the end of the day, as usual, they monitored her vitals. Mallory’s temperature was not abating and she was experiencing an elevated heart rate. Not too serious, but they didn’t want us driving 120 miles back home. Time dragged on and as it neared 8:00 p.m., the decision was made to admit Mallory for her fourth hospitalization, her third this month. Having been awake since 2:00 a.m., we were exhausted, but also relieved that Mallory would receive the care she needed and that we would not be making another potential helicopter trip tomorrow. We were escorted to an isolation room in the ER where we encountered friendly and familiar faces. More vitals, more samples, more admitting paperwork. . . . It was nearing midnight by the time they said a room was ready. Iz and I agreed to part ways for the evening because we so desperately needed sleep. The room will only house one person besides the patient. I left for a quick bite and a nearby hotel and Iz made her way up to the room. It was well past 1:00 a.m. when we finally each got ready for bed. We’d both been up for a solid 24 hours and we were done.

The next day was brighter and we both got some sleep. I arrived back at the hospital at about 9:00, Starbucks and poppyseed muffins in hand. We were soon visited by the on-call-ogist who said Mallory’s numbers looked good, her fever had abated, and she was good to go; however, again, he didn’t want us to go all the way home in case her fever returned. We were finally discharged at 4:00 p.m. and elected to stay at a hotel in Glendale for the night. We stayed at the Embassy Suites which was both roomy and affordable. We had a pleasant evening and ordered room service so that Mallory didn’t have to be exposed to a bunch of conventioneers. In the morning, still no fever, so we finally headed home, as it turned out, for good. We made good time and Mom was happy because we arrived home just in time for Mom to give Mal her next dose of chemotherapy through her line. Mallory needs to stay on track with the timing of her medicine as much as possible and although this task of giving chemotherapy meds intravenously has been a little disconcerting for Mom, she is vigilant when it comes to Mallory getting her medicine when she needs it. Mal has been doing very well since our release from the hospital. Her mood has been good, her color, her activity, all good. She threw up once in the middle of the night, but that’s very atypical.

Yesterday was a regular visit with the oncologist. We met not with her, but with her nurse-practitioner, Lauren. We have been working with her over the phone, so it was nice to meet her. She found Mallory to be in good health with no major concerns. She confirmed that we were finally, mercifully, finished with Delayed Intensification. Israel and I looked at each other and each heaved a sigh of relief. This has been, by far, the most difficult phase of Mallory’s chemotherapy—for us, for Grandma, for Donovan, and certainly for sweet little Mallory. We are now preparing to enter the final phase of the first eight months: Interim Maintenance II. There will be two more lumbar punctures, Vincristine, and increasing doses of Methotrexate, even higher than in Interim Maintenance I. But we are optimistic that whatever side-effects or setbacks we experience, they’ll be easier than the past six weeks. Once we’re done with that, we’ll enter the final phase of chemo: Maintenance. This phase, unlike the previous phases, will last for two years, lasting until Mallory enters Kindergarten. Our hospital visits will be less frequent though, averaging once a month. We will likely face more side-effects and more hospitalizations, but we hope nothing like we’ve faced in the last six weeks. We’re bleary with fatigue, trying to balance work, family life, other responsibilities, and Mallory’s critical care. We appreciate so much the prayers, the donations, the cards, the Facebook posts, the texts, the cards, and the many thoughtful and generous gifts that we’ve received for the kids. The warmth of the love that surrounds us has sustained us in these dark, seemingly endless days. We’re grateful to be a the end of this phase and we thank you for all your love and support.

Delayed Intensification Part 1

Now we know.

We were told this would be hard. Doctors warned us that the first month was the hardest. Doctors told us the most intensive part of Mallory’s treatment would last six months. Parents told us that the six months is more like eight or nine months considering delays. In fact, after Induction, the first phase, we went through Consolidation and Interim Maintenance and then yes, the hardest, most intense phase yet, the dreaded Delayed Intensification phase. At this point, kids experience loss of hair, multiple hospitalizations, and many set backs due to low blood counts and opportunistic infections. Now, three trips to the ER and two Life Flights later, we know: cancer sucks.

Six short weeks ago, our biggest problem was finding a local place to draw blood for analysis. We’d grown tired of trips to Hollywood only to be sent home when Mallory’s numbers weren’t high enough for treatment. Our oncologist wrote us a prescription for blood draws and we went door-to-door to find a qualified lab to do it. Because Mallory has a port, we’re hoping to save her the pain of a peripheral draw on top of a port access. One lab said they could do it, but only if we were chemo patients with them. We finally found CBCC—the Comprehensive Blood and Cancer Center. They said, “No problem, we do it all the time.” After much rigamarole and signing of forms, the nurse did a capable job of accessing Mallory’s port and the results were faxed to CHLA late the same afternoon. We were on for an LP and chemotherapy at 5:45 a.m. the next day.

We arose at 2:30 a.m. and got on the road at 4:00. We made it to CHLA and had what has now become an impossibly routine procedure. Mallory sailed through, we met with our new oncologist, Dr. Baskin, and Mallory got started on a new chemo med, the dreaded doxorubicin. Bing bang bong, just like that, we piled into the car and went home. More doxorubicin the following Friday and the nurse gave Israel lessons in how to de-access Mallory’s port. Soon we would be delivering IV chemo meds at home, as though the whole process weren’t terrifying enough already.

The following Saturday, Mallory spiked a fever. I had worked at BC in the morning, and as I walked out to my truck, I glanced at my phone and noticed that I had a few, frantic texts.

11:17 Mallory burning up
11:32 Come home
11:47 Now 103º

I raced home to find Israel hovering over Mallory with two thermometers. I checked the readings: High. Iz started packing and I phoned CHLA. The oncologist on call told me we had to take Mallory to the ER—right now. I begged him to let me drive to CHLA, but he said it was too dangerous to be without emergency medicine for two hours—couldn’t risk it. He said he knew about Bakersfield and assured me that he would call ahead, which he did. We arrived at Memorial 30 minutes later and they knew who we were. Iz kept Mallory outside while I filled out paperwork. They took us in right away, placing us in an isolation room. As soon as the nurse presented himself, I began to tell him everything that had gone wrong on our previous visit. To his credit, he listened to every word and assured me that it wouldn’t happen today. True to his word, we were treated well and quickly; however, it’s not the same as CHLA.

He accessed Mallory’s port capably, but with a different, less stable needle. His dressing was too large and had far more skin contact than necessary. When he placed a syringe in her line, he swiped an alcohol pad across the access point. Iz and I shot glances at one another. At CHLA, they’ve done extensive research into how to prevent central line infections. They ALWAYS vigorously clean an access point with alcohol for 20 seconds and then allow it to dry for 10 seconds. Everywhere in the hospital, always, no exceptions. If Mallory gets a central line infection, she’ll have to have surgery to replace her port—at minimum. Israel set him straight and told him how we wanted the line cleaned, and that’s what he did. The doctor, a very likable professional, pushed to catheterize Mallory for a urine sample, but we stood fast and wouldn’t allow it—again, for fear of infection. Israel helped Mallory and collected a urine sample herself. He returned to tell us that we would be transported by ambulance to CHLA. 30 minutes later the nurse came back and asked if one of would come to the phone to speak with a member of the flight crew.

Flight?

I took the call and was apprised of the risks and what-ifs. I was then pressed for my weight and Israel’s weight. She said it was up to the pilot who, if either of us, could accompany Mallory. She said it was a 40-minute flight and to expect them within the hour. I debriefed Iz on all the details and she was resolute that she would go on the flight because she would not leave Mallory’s side. I assumed this would be the case as she is very nearly half my weight; however, when the flight crew appeared, we were told it was me who would fly with Mallory. No sooner were the forms signed than the flight crew, a security officer, and the Morans made their way to the helipad on the roof of Memorial Hospital. We loaded up, exchanged kisses, and just like that, Mallory and dad were in the air. Not too exciting and very warm, the transport was not a great deal unlike riding the bus. We all wore headphones and mics to communicate. Mallory was strapped onto a stretcher and one crew member cradled her head throughout the flight. In just over a half-hour, we landed on CHLA’s helipad and were whisked directly into our room.

Israel arrived hours later, after running home to pack and then driving over the Grapevine. For the next several days, doctors worked to find the source of the infection causing Mallory’s fever. X-Rays, blood samples, blood cultures, and urine samples failed to reveal the specific cause, something that oncologists tell us frequently happens. Often, the source of a fever doesn’t always present itself. After several days, her white blood cell and absolute neutrophil counts rose to a sufficient degree that doctors discharged us on Tuesday. We drove home exhausted but happy to be back in our own house.

We were happy to be home, but Mallory clearly didn’t feel well. She had fussed and cried for two days. On Thursday, the fever reappeared, rising past 103º. As instructed, we phoned the hospital and they referred us to Memorial. I again pleaded with the doctor to let me drive Mallory directly to CHLA, but he insisted that was too dangerous. Two hours on a desolate highway with a neutropenic, febrile toddler is too great a risk. We returned to Memorial, finding it much busier than the previous Saturday. Because Mallory has almost no immunity and is a chemotherapy patient, she must be placed in an isolation room. None were available, so we waited for hours in a small, distant waiting room. Eventually we were put into a cubicle with other patients protected by only a curtain. We had to get somewhat firm with the doctor and nurses about Mallory’s condition, what we required, and the risk that she was being placed in. I finally had to phone the doctor at CHLA who asked to speak to the physician assigned to us. Eventually we were placed in an isolation room that had somehow, miraculously opened up. Soon the familiar sound of rotor chop signaled the arrival of the chopper.

This time the pilot—who remembered us—said either parent could go, so it was Israel’s turn in the sky. Iz and Mallory boarded the chopper and dad drove home to pack and head to Hollywood. After another 40 minute flight, Iz and Mallory emerged from the chopper onto the roof-top helipad at CHLA and were greeted by an oncologist and a team of nurses waiting for them. Again, she was taken directly to her room. More samples and more tests ensued, always with the goal of finding the infection—viral or bacterial—that was causing Mallory’s persistent fever. Since her first hospitalization she had developed a pronounced rash and experienced excruciating pain when going to the bathroom. I stayed with Mallory and Mom though the weekend, but as Wednesday approached, it was time for me to head home. School would soon be back in session for me and I wanted to be able to take Donovan to his first day of school. There was no telling when Mom and Mallory would be released, so I rented a car to drive home, leaving the GMC for the girls. This was Mallory’s first hospitalization when we weren’t both there. Israel won’t let Mallory out of her sight, so it’s difficult for her to pop downstairs for breakfast or a coffee. Fortunately our niece Meghan lives in the neighborhood and she came and helped out.

The doctors ordered an MRI for Mallory to search for the source of her pain. The scan did reveal significant inflammation in her lower GI tract, what we believed was mucositis. Eventually, with multiple antibiotics, the rash and infection subsided. It was a long, difficult hospital stay, but Mallory and Mom finally came home after one week. Mom wasn’t ready to leave, uncertain that Mallory’s infection was completely resolved and fear that she would just be returned to CHLA again in a couple of days, she didn’t want to leave the hospital without Mallory being completely healed, but eventually she relented and returned home. Discharged at 10 p.m. and arrived home at midnight.

Continued in Part 2.

Red Tears

Last Friday, we readied ourselves for another visit to CHLA. This was to be a non-surgical day, during which, in addition to our regular consult with Dr. Tran and chemo infusion, Mallory would get an EKG. Our appointment was a civilized 11:30 a.m. Subtracting 30 minutes for access and a blood draw, our scheduled departure was 8:30 a.m. We blissfully slumbered until 6:00 a.m., allowing for an actual breakfast, milk included.

We made our way over the pass, arriving more or less on time and made our way to the hospital through the subterranean garage. Emerging from the elevator, as is our custom, we meandered through the post-and-rope stanchions (which I prefer to the retractable belts) to the front desk. The older Filipino gentleman—my favorite of the front desk staff and all business as usual—inquired about our agenda. We answered chronologically:

Hematology
Cardiology
Oncology
Infusion Center

He scribbled our itinerary on three small badges with a bold Sharpie, handed us a mask for Mallory, and bid us “have a nice day.” Not bloody likely, I answered silently.

Because of dusty renovations in the Oncology Unit, all blood draws now take place on the first floor in Hematology. Although CHLA is a pediatric hospital, the oncology nurses are a special, caring breed who handle needle access in the most delicate and caring manner. Hematology, on the other hand, has been hit-and-miss over the past several weeks. When we checked in, the hulking, taciturn receptionist at the desk handed me a pink triangular tear-off emblazoned with “49.” In his reticence, he failed to inquire whether or not Mallory had a port, leaving me to wonder how our appointment would unfold once they started brandishing needles. We have learned that most phlebotomists have neither training nor experience in accessing a subcutaneous port. As if in answer to my meditation, a gangly male nurse in scrubs opened the door and bellowed, “49!” He was Stan Laurel to the front desk’s Oliver Hardy. Upon discovering that Mallory had a port (another fine mess) he stated flatly that he was turning us over to someone else, as it turned out, Catrice. This young nurse greeted us warmly with a confident, beaming smile. She spoke directly to Mallory, in a caring but matter-of-fact way, entirely void of the condescension that sometimes accompanies singsong toddler talk. Instead, she interacted with Mallory, whom she rightly assessed was apprehensive, guiding her through the procedure. When it came time to access, she asked Mallory if she wanted to count, “one, two, three.” Mallory refused to make eye contact, instead, sucking furiously on her thumb, faintly nodding no. With that, Catrice slowly and carefully placed the needle in her chest. Mallory didn’t blink. No whimpering, no howling. She didn’t so much as inhale or furrow her brow. Iz and I were stunned, relieved, and grateful. We were so impressed with this young, caring professional who asked Mallory what she wanted and did just as she asked.

Accessed and emboldened, we made our way to cardiology. We ascended in the giraffe elevator to the second floor and asked a nurse carrying her lunch where cardiology was located. Being new, she didn’t know, but several other staffers were eager to help. It turned out to that although Cardiology is, indeed, on the second floor, it is the second floor of the “new” building where we lived during her initial hospitalization. We descended the giraffe elevator, crossed the hospital, and passed the HBO Café and the celebrity donor wall. We are, after all, in Hollywood. We turned the corner and were stopped at the security guard’s desk for questioning. The front desk receptionist had neglected to add “cardiology” to the list of destinations on our access badges. The security guard—Roz from Night Court—could clearly see the look of despair on our faces because she waved us through, something I’d never seen during our initial eight-day stay in the hospital. With relief, we entered a fifth elevator, no animal-affiliation, and headed for Cardiology.

Lacking the proper credentials, we tiptoed surreptitiously down long, abandoned corridors until we arrived at the designated reception area. We waited alone. We were soon escorted to a tiny room with a tiny bed, a technician, and an ultrasound instrument. The platinum-blonde technician, both lovely and kind, seemed inured to the overhead monitor blaring Finding Nemo—nothing more than white noise after hundreds of cycles. She placed leads from the ultrasound, applied heated goo to her magic wand, and gently circumnavigated the 20-gauge butterfly needle in Mallory’s chest. As Israel cradled Mallory’s hand, the monitor displayed a fuzzy, surging monochrome gray-scale image, the Shroud of Turin for all I knew, with flashes of blue and red, measuring the velocity of blood entering and exiting each of the four, tiny chambers of our daughter’s heart.

As I struggled to make sense of the fuzzy screen, undulating and flashing a visual language in which I am illiterate, from the screen above I could hear Marlin assure Nemo: “Oh. There, there, there. It’s okay, daddy’s here. Daddy’s got you. I promise, I will never let anything happen to you…”.

After twenty minutes and a brief clean-up, we were assured the subsequent EKGs (there are subsequent EKGs?) will be much more brief. Mallory got princess stickers. Iz and I felt relieved to have experienced a procedure that didn’t involve blood, needles, radiation, or chemotherapy. As we strolled down the hall to the elevators, I was conscious of the fact that my neck and shoulders weren’t tense. All three of us were relaxed. We laughed and danced our way down corridors that were now shorter and peopled, on our way to Oncology for our consult with Dr. Tran.

It’s always good to see Tran. We’ve become accustomed to him, and him to us, I suppose. He always greets Mallory warmly and answers all our questions, our Sherpa in the Leukemian Himalayas. We have ascended half-way through the 56 days of Interim Maintenance. Soon it will be time to begin the dreaded Delayed Intensification phase. This phase is very similar to Induction, what was promised to be the first and worst phase of our two and one-half year journey. In the coming phase, like the first, we will see a return of the bloating steroid, Dexamethasone, more Vincristine, a second dose of Pegaspargase—the drug to which one in four children have a severe allergic reaction—plus new additions to the cocktail: Cyclophosphamide, Thiguanine, and Cytarabine. Oh yes, and a Methotrexate chaser, shot directly into the spine. Today, however, Dr. Tran wanted to discuss further one new drug for the upcoming phase, the drug that necessitated the EKG: Doxorubicin. Tran perked up as he excitedly shared the drug’s unusual history. Found only in the red soil of 13th Century Italian Castel del Monte, the drug is semi-synthesized from a naturally-occurring microbe into an anthracycline antitumor antibiotic. Due to the crimson soil from which it emanates, common side effects include turning urine and tears red. Others are nausea and vomiting (in 30-90% of cases), mouth sores, prolonged low blood counts, and hair loss, which is experienced by most who take this drug. Tran continued with less frequent but more severe side effects, chief among them, liver dysfunction and cardiotoxicity. Like all anthracyclines, Doxorubicin gets wound up in DNA, which is what can cause life-threatening heart damage. Tran informed us that this can manifest five or ten years down the road, so if Mallory starts fainting in PE, we might want to bring her in.

As I was processing this new terror, enumerating in my head the newly revised list of horrible circumstances that can go wrong, Tran told us he had news of an important, personal nature: He is leaving CHLA for a position at a Bay area hospital. To assuage our dismay, he told us how wonderful we’ve been to work with and what a great job we’re doing with Mallory and that he would work hard to connect us with one of the other 27 oncologists as we transitioned to Delayed Intensification. This phase will begin on July 31st or August 4th, depending on when Mallory’s body will tolerate it. Her last dose of Methotrexate resulted in several delays. There’s no telling how today’s larger dose will affect her. We plan to do our first blood draw in Bakersfield and have the results sent to CHLA in advance of our trip. If her numbers don’t make, we’ll keep 250 miles off the odometer, save $50 in gas, and add twelve hours to our life clocks.

We ended our day as we have so many others, in the Infusion Center, where Mallory got another bolus, an infusion of Vincristine, and 110 mgs—her largest yet—of Methotrexate. She’s been nauseous over the past 36 hours and threw up once, the result of what Mallory refers to as a “grumpy tummy.” She always apologizes when she gets sick: “I’m sorry I throw uuuuup,” extending the final word, as is her custom, to add a sad sincerity to her act of contrition. Iz and I assure her that it’s not her fault, that it’s normal, that it’s the meds, but she somehow feels answerable. We can’t get her to eat much—nothing tastes good because of the chemo. She’ll eat eggs, bacon, pretzels, and the occasional yogurt. The Dexamethasone will kick-start her appetite. She is stalwart, brave, and seemingly resigned to face this trial.

We’re tired and worried and stressed-out; however, in the four months since Mallory’s diagnosis, we’ve seen two of our new friends bury their children. Others are fighting unrelenting fevers, persistent bleeding, and other withering side-effects that make ours pale in comparison. Our hearts ache for them. Even from that perspective, it’s immensely difficult to watch a team of professionals slowly and methodically poison our precious child. We are now into the fifth month of this thirty-month journey. Our suffering stems from our desire for Mallory not to be sick—something we cannot change. Our joy emerges from her smile, her laughter, her many days during which she feels well. She must be brave and strong, and so, too, must we.

Got Milk?

We’ve reached summer’s center, the half-way point of the long holiday. Bakersfield has been unusually mild this year, one of the many things for which we are grateful. Donovan has enjoyed being off from school, and busies himself going to My Gym and the local community martial arts class, offering an amalgam of Taekwondo and Karate, where he now sports a yellow belt. Mallory stays mostly at home, protected in a relatively germ- and virus-free environment, enjoying princess tea parties, the Fourth of July, and occasional swim outings. These arid months are comparatively carefree, but we are dreading the coming flu season in which Donovan and I will transporting all manner of cooties into the house. For now, she is content honing her superpowers, perfecting her princess skills, watching TV, doing puzzles and games with Mom, and being generally happy. Iz has been enduring a few health problems herself; nothing serious, but we’ve made several trips to UCLA in addition to our regular visits to CHLA because medical care in Bakersfield is fakakta. I have one more week of summer school. As to who is looking forward to its completion more, it’s a toss-up between me and my students.

Two weeks ago, we prepared for our regular visit to CHLA. In the past weeks, several of our visits were busts because Mallory didn’t reach her minimum numbers. Each successive and successful visit has been for chemo only, not even seeing the doctor each time. They became routine visits to the Infusion Center—so routine, Iz and I took turns handling them solo. This visit, however, was another to the Surgery Center for a lumbar puncture. Our appointment was for 7:30 a.m., which meant a 4:00 reveille. Neither of us got to bed early enough, nor did we sleep well, so I was as amazed as I was alarmed to find Mallory staring at me when my phone began to chime at 4:00 a.m. I scooped her up, lurched toward the living room, ignited the TV, made coffee, poured her milk, and stumbled toward the shower. After drying off, and as Iz was getting ready, my thoughts began to slowly coalesce into a semi-coherent whole:

Surgery
Two hour drive
Stop in Valencia
Check-In at 7:30
No solid food or drink after midnight
Water or apple juice OK until 5:00 a.m.
Milk
Oh, no. No. NO!

I stuttered to Israel: “Surgery today? No milk, right? I think I gave her milk. I’m not sure. . . .” Iz nearly knocked me over and bolted for the living room. I ran behind her, struggling to keep up and arriving just in time to see her snatch the sippy cup from Mallory’s lips. She unscrewed the lid and we peered into its pink depths: an ounce remaining, maybe. Mallory had consumed a good six ounces of ice-cold, low fat moo-juice, definitely not what the doctor had ordered.

What harm had I now wrought? We were now facing a two-hour drive with the distinct possibility that we would be turned away. I phoned the CHLA Surgery Center at 4:30 a.m. and confessed. A young man exclaimed, “Milk!? That will take six hours to get through her system! Hold on—I’ll ask the surgeon what you should do.” After five minutes he returned. “I didn’t ask the doctor. If I did, he would just say, ‘reschedule.’ Come anyway, because you need chemo meds regardless of surgery. We’ll just have to wait and see what happens with the LP.”

As the sun rose, we drove glumly south to the hospital. We stopped to apply Lidocaine to Mallory’s port and continued to Hollywood, arriving on time. We checked in and settled in the waiting room. Everyone who was there ahead of us was called, disappearing into the labyritnth of pre-op interrogation rooms, waiting rooms, and recovery rooms. Everyone who arrived after us was also called and subsequently disappeared. We waited for two and one-half hours. It was clear that the milk incident had been reported and that rather than being returned to godforsaken Bakersfield, they took mercy on us and pushed us back in the schedule. Sure enough, at 10:00, we were called back and interrogated:

When is Mallory’s birthday?
What are you having done today?
Is she allergic to any medicines?
Has she had any recent fevers?
Does she have mouth sores?
Any loose teeth?
Anyone dumb enough to give her food or drink since midnight?

A nurse accessed Mallory’s port (“access” is a euphamism for plunging a needle into her chest), drew her blood and sent it off for analysis. While we waited, a woman in a smart business suit from Imnotsurewhere presented herself. Would we be willing to participate in a study? Dr. Icantrememberhisname has developed a new mask that measure CO2 exhalations. Would we consent to Mallory wearing said mask during her procedure? The FDA won’t approve without trials. She assured us that the mask is otherwise identical and there’s no risk.

“Sure, why not? Does it measure the amount of milk in her blood?”
“Excuse me?”
“Nothing. Where do I sign?”

We signed a sheaf of forms and at 10:55 a.m. Five hours and fifty-five minutes after drinking her milk, Mallory was dosed with Propofol, drifted off to sleep, and was wheeled to her procedure. Utterly (udderly?) defeated, while at the same time triumphant, we sat slump-shouldered and bleary-eyed in the waiting room and silently inquired of each other, how will we ever survive this?

Mallory’s procedure was typically brief. The doctor was kind enough to poke her head in and personally let us know that all went well. We were soon escorted to recovery where we found Mallory, beneath an ordinary oxygen mask, sleeping peacefully. In past weeks, Mallory has awakened from her procedure after 15 or 20 minutes, sitting bolt upright in spite of having endured a spinal tap. This time, however, she remained stubbornly asleep. We finally resorted to trying actively to wake her, to no avail. She remained so stubbornly asleep that we were eventually moved to an antechamber so that other patients could access the recovery center.

Once she came around, Mom requested a popsicle for Mallory, her favorite hangover remedy, and we were quickly released just in time to make our appointment in the Infusion Center for chemo. We made our way down to the first floor, found the appropriate elevators (giraffe, tiger, and peacock are the choices) and rose to the second floor of another building. Once in the IC, we made ourselves comfortable as Mallory’s line was flushed with saline. A nurse came in with no meds and inquired, “Do you have an appointment with Dr. Tran?”

“No,” we replied simultaneously with the certainty of a couple holding a hospital itinerary.

“Actually, you do. It was fifteen minutes ago.”

We packed up, descended the peacock elevators, walked across the hospital, and ascended the weird, little elevator (a fourth, non-animal themed transport) to the fifth floor to see Tran. He appeared soon, offering his customary warm greeting. He checked Mallory over, reviewed her chart, and gave us the coming attractions. Mallory will need an EKG because one of the upcoming meds in the next phase can cause irreparable heart damage. He went on to explain that heart damage typically occurs at doses exceeding 350 mgs and that Mallory will receive three 25 mg doses. Nevertheless, they want a baseline reading on her heart. Just another terror to add to our list. . . .

Upon completion of our dread-session, we made our way up and down animal and non-animal themed elevators to the IC for chemo. Because of the extreme toxicity of Methotrexate and Vincristine, Mallory needs an hour of fluid infusion before the meds, so that took a couple of hours. As usual, we finished at about 5:00 p.m., having spent nearly 10 hours at CHLA, 15 hours if you count drive time. But five of those hours were due to my negligence. Got milk?

As the dog days drag on, our summer is interspersed with flashes of excitement. On July 11th, after weeks of planning and hard work, a dear friend from our days at CSUN, Kimberly Whetter, hosted a fundraiser for Mallory at her home. Kimberly was joined in this effort by her husband, Jevon, Team Mallory, and another long-time, dear friend, Janet Maxwell. One of the members of Team Mallory, Larry, even flew in from Kauai, to attend and assist with the event. It was, by all accounts, a magical evening of wine tasting, hula dancing, Hawaiian BBQ, painting, and featured an ASL performance by none other than Jevon Whetter and Troy Kotsur. Many in attendance were old and dear friends. Many others were strangers to us, but all came together for a wonderful evening in support our dear little one. They raised an incredible amount of money, which will be deposited into Mallory’s GoFundMe account. We’re so grateful for all the love and support. We simply can’t account for all the messages of love, offers of help, contributions of support, and outright love that we feel. We hope everyone knows that these sustain us, help us through our days, and illuminate the darkness we sometimes feel enveloping us. We are eternally grateful.

Coordinated Care

Summer is a season of contrasts. On the one hand, certainty: Bakersfield’s long, brutal summer has enveloped the valley; on the other hand, ambiguity: Mallory’s scheduled chemotherapy changes from week to week, a slave to the vagaries of blood chemistry.

Most days are good. Mallory plays, laughs, naps, and eats. Her grandma, aunty, and cousins come to visit and entertain her and Donovan. Her appetite wanes, but we manage to get some food in her. She becomes distraught easily, a sure sign that she doesn’t feel well. She sometimes blanches, losing all color, even in her lips, though she rarely complains with any specificity.

Mom: Mallory, are you OK?
Mallory: I don’t know.

Dad: Mallory, what’s wrong?
Mallory: My body hurts.

She struggles to understand why kids can’t come over, why she can’t go to daycare, why she can’t enroll in dance. Most of the time we keep her occupied. Often, she doesn’t even seem sick. Once in a while, though, lightning strikes.

Two weeks ago, Mallory made a trip to the ER at Memorial Hospital. She spiked a fever, a dangerous state for a child undergoing chemotherapy. Because of her scorched-earth immune system, she lacks the natural ability to fight infection. After phoning Children’s Hospital and conferring with the oncologist, we agreed to take Mallory to our local hospital. Following a comparatively short five hours, Mallory was given an antibiotic and sent home. It was uncomfortable, uncertain, and unfamiliar, as detailed in a previous post, but we survived unscathed, or so I thought.

After reading my Facebook post, Mallory’s pediatrician went to Memorial on Saturday to look in on her. Not finding her, she contacted me to make certain we were home safe. While I pondered why she would assume that Mallory had been admitted, she asked me a number of questions that I couldn’t answer:

Were the blood cultures analyzed?
What was the name of the antibiotic?
Are you returning to the hospital?

She then asked for our oncologist’s contact info. They emailed one another and spoke on the phone. Israel and I greatly admire our children’s doctor and were greatly comforted by her concern. Little did we realize the backstory.

A subsequent phone conversation with Mallory’s pediatrician revealed that my apprehensions about our ER visit were well founded. She discovered that Mallory’s blood cultures never made it to the lab, where they should have been analyzed prior to prescribing the antibiotics she received. What’s worse, we were not instructed to return the next day for that medicine’s required second dose—something never even mentioned to me. In a follow-up email from our oncologist, he wrote that given Mallory’s numbers, standard protocol dictated that she should have been admitted to the hospital, revealing why her pediatrician was looking for her. People often ask us why we don’t arrange for her chemotherapy here in Bakersfield. This experience amplifies our silent answer: Are you crazy?

Israel and I have had problems with medical care in Bakersfield before, serious medical conditions undiagnosed or misdiagnosed, but I never had encountered the callous belligerence exhibited by the ER doctor. She scarcely saw Mallory. When our nurse, gowned and wearing a mask, was treating Mallory, the doctor poked her head in and demanded, “What are you gowned up for? She’s not neutropenic.” I quickly retorted that Mallory was, though I wasn’t altogether sure what she meant—I was just moved to defend my daughter. The nurse asked the doctor what Mallory’s ANC was—her absolute neutrophil count. The doctor snorted, “1,400, I think.” The nurse gave some sort of silent reply, a shrug perhaps, because the doctor answered with irritation, “I don’t know, I have a dozen patients!”

Upon discharge, when I was finally given Mallory’s printout, her ANC was, in fact, 400. As it turns out, neutropenia is indicated by an ANC count below 1,500. Severe neutropenia is less than 500. These numbers describe the degree to which chemotherapy has destroyed white blood cells and the resultant crippling of the immune system. The numbers rise when and if the body can replace the razed cells. Thankfully—as so often seems to be the case—our nurse had a clear sense of what was going on. Although I asked three times, I never received a direct answer as to whether or not they had conferred with the oncologist at CHLA, as he had requested when giving me his cell phone number. This was the standard of care we received from our town’s designated pediatric ER facility.

Our pediatrician and oncologist have agreed that in the future, when Mallory is sent to the ER, Israel and I will contact her pediatrician who will coordinate with CHLA and our local hospital to make sure that we receive the minimum care we require. Israel waited up for us until 3:00 a.m. As she finally drifted off, I remained awake. As if leukemia and chemotherapy weren’t complicated enough, we now feel the added responsibility of supervising local hospital staff charged with treating Mallory’s illness.

With each sunrise, new challenges emerge. Last Monday Israel drove down to CHLA for Mallory’s next every-ten-days chemo treatment. Her ANC was too low, so Iz flipped a u-turn and completed the near 250-mile roundtrip. As long as Mallory is OK and given the proper care, no journey is too far. We were told to return Friday, so I took my turn. Poor Mallory has to go every time. Once again, her numbers were too low, even lower than Monday. In the ER, the doctor thought her ANC was 1.4, but it turned out to be .4. Today, it was 0.07. Put into terms easier to understand for us non-scientists, absolute neutrophil counts are like money. In a normal, healthy child, the ANC level is 3.0 to 8.0—say $3.00 to $8.00. In the ER, the doctor thought that Mallory’s ANC level was $1.40. In fact it was 40 cents. On Friday, it was seven cents. The nurse sternly admonished me not to take Mallory to any public, enclosed spaces (mall, theater, etc.), to wash our and her hands assiduously, and to avoid exposure to anyone who is sick. She was given a dose of Vincristine but the dreaded Methotrexate has to wait until her counts will enable her to survive it. We were instructed to stop her weekend antibiotic in order to aid in the restoration of her ANC.

If all goes well, she’ll get her Methotrexate next Thursday and, for good measure, a lumbar puncture the following Monday. If not, there will be more delays in the critically-timed chemotherapy. I asked the nurse about the ramifications of delayed chemo treatments. Rather than answer my question, she counseled (or consoled) me that some children are delayed as long as a month. In a regimen with directives such as X medicine must be given on day 28, and infusions happen precisely every 10 days, I wonder what the impact of two or three weeks will be, and as always, there’s nothing I can do about it.

The world seems a bit brighter today. Though tired and not feeling well, Mallory is getting through her days with a minimum of pain and sickness. She’s even gone swimming once, and although it wore her out, she so enjoyed getting out of the house. Donovan is exercising at a local kid’s gym and is getting his Chuck Norris on at a community martial arts academy. My summer school class is going well and I’m home with my family every afternoon. Israel is nearly back to normal following her surgery, staying busy with endless affairs of our household and Mallory’s care.

Team Mallory—our three guardian angels, Larry, Mala, and Bonnie—stays in close contact, keeping tabs on us and cheering us on. They have recently coordinated with other dear friends, Kimberly and Jevon Whetter, who are hosting a fundraiser for Mallory’s care. It’s a wine and paint party with Hawaiian BBQ and a silent auction featuring a performance by Jevon and Troy Kotsur, world-class ASL performers. Like so many others, Kimberly has been moved to help us because her own life has been touched by cancer. We continue to be overwhelmed—dumbfounded, really—at the care and generosity of so many wonderful people.

As always, thank you for reading and thank you for loving Mallory.

It’s a Cancerous Life Pt. 2

Continued from Part 1

*Saturday 1:30 a.m. Tempting Fate or The Dangers of Editing

Shortly after I had written “. . . or stayed out of the hospital,” I stroked Malloy’s head which was hot to the touch. I scanned her forehead with the thermometer: six readings, six results, each ranging from 101.5 – 102º. Protocol says phone the on-call oncologist (the on-call-ogist?) if above 101.4º. Mercifully, Dr. Yeo, who knows Mallory well, answered. When I reminded him that we lived 120 miles away, he directed me to the ER here in town. I called Mercy SW, but they threatened to transfer Mallory to Memorial because it has pediatric facilities. When we arrived at 9:00 p.m., her temp was back to normal, but there was no talking our way out of it at this point. After a short wait outside, we were placed in an isolation room, separated from its neighbor by an accordion barrier. Littered with supplies, surplus monitors and infusers, and a 20-gallon plastic “sharps” container, with a red metal exoskeleton holding open the disposal port, this room seemed somewhat less than sterile. Shortly after I placed Lidocaine on Mallory’s port, a nurse skillfully, if imperfectly, accessed her port. As this was her second consecutive day to be accessed and it was approaching midnight, Mallory was somewhat less than cooperative. The nurse fumbled unsuccessfully to place the sterile barrier; he used a massive sticky film rather than a soft cloth patch to hold the butterfly needle in place—everything Mallory fears and dreads. He did an OK job, but it differed from our home at CHLA. As Mallory howled in fear and writhed in my firm hold, just when I thought my heart and hold would break, a young EMT poked his head in and handed one of the nurses a little stuffed animal, a rescue dog. I could barely sputter my thanks for this extraordinary kindness. After the blood draw and a shift change, the new nurse wanted a catheter urine sample. I politely refused. She returned shortly thereafter to try to redraw because they couldn’t find the sample. I directed her to keep searching: Mallory was done. So we waited to see—when and if they found the sample—if her levels would require hospitalization or just antibiotics. Sometime after midnight, beneath the undulating glow of my iPad, she drifted off.

Things are a little brighter on Saturday morning, but none of us can shake off last night. Mallory awoke early, but she took an hours-long nap shortly after. When she awoke, she vomited profusely, the third time in as many days. It seems the side-effects may be grabbing hold. I wonder, have I tempted fate? I’ve hesitated posting some of the photos of Mallory showing her happy and carefree, for fear of calling the fates of sickness home. Beautiful hair? If I don’t show it, maybe she won’t lose it. Brag about her not being sick? That’s a ticket for a trip to the hospital. I don’t really believe any of that, I think, and yet, in the face of the inexplicable, one’s mind wanders. Mallory’s illness is starting to accelerate like a runaway train. As I gaze out the window, the scenery a receding blur, I worry about twists and turns in the track ahead, and I fear the ultimate destination. I ask myself what can I do to stop it? The steel rails whisper: nothing.