Dear All—

It has been a while since I wrote my last note from a cot aside Ellie’s hospital bed during her T-cell transplant treatment at MD Anderson. Thanks to all of your holiday prayers, Ellie made it home in time for a quiet, wonderful Christmas with Nick, Katie, Joey and Jeff.

When Ellie arrived home, she was severely immunocompromised. She was forbidden to leave the house without a medical mask and had to promise not to get close to or touch anyone. As part of a large family of huggers and close-talkers, Ellie found this mandate to be challenging and problematic, to say the least. Even going to church was forbidden and friends were not allowed to stop in to say, “Welcome home” or drop off Christmas gifts.  

On the bright side, immediate family members were allowed, so our brother David flew up from L.A. to spend time with Ellie. A few days after Ellie’s return from Houston, it was David who opened the door to the most beautiful and thoughtful sight and sounds of good tidings. A large group of Ellie’s close friends had gathered in front of the house wearing festive Christmas attire and carrying caroling books. The group proceeded to serenade Ellie, David and Jeff from outside the house, while holding a sign reading, “We promise we won’t come in!” 

They delivered pitch-perfect renditions of "We Wish You a Merry Christmas" and more. (Seriously...how do people come up with such thoughtful and perfect solutions to such difficult situations?) As Ellie cried, David started videotaping, and Jeff managed to enjoy the moment despite his fear that some of them would charge in for a forbidden hug.

With the kids home from college after Christmas, the Guardino family made it up to Tahoe to relax and recover. Ellie isn't skiing anymore, but she loves walking in the fresh mountain air, playing endless games with the family and working on puzzles with the snow falling outside. Somehow since that time, winter made way for spring, then spring turned into summer, and we have all been enjoying seasons of laughter and joy intermixed with Ellie’s serious fight to stay alive.

I have been holding off writing until there was some significant positive news to unveil, but Ellie continues to teach me that each new day, in and of itself, is a bit of good news. After she completed the intensive transplant process resulting in some 103 billion new cancer-fighting cells multiplying in her system, she spent early January fully focused on recovering from the impact of the transplant on her kidneys, nerves, spine and a bowel obstruction. The initial daily walks around the hospital floor with an IV pole in tow slowly built up to walks through the Guardinos' Menlo Park neighborhood and soon, to daily four-mile hikes. Ellie needed regular platelet and blood transfusions at Stanford that first few weeks of recovery, so she couldn't stray too far from home.

In mid-January, we headed back to MD Anderson for a full battery of MRIs and PET scans and tests to determine the efficacy of the T-cell transplant treatment. While we exchanged pleasantries, Ellie shared some books she has recently enjoyed with the medical team, including The Sun Does Shine about a falsely accused inmate who was imprisoned for 30 years. True stories like these continue to reinforce how very fortunate we all are. 

The first set of scans showed questionable results, meaning there was not any proof as to whether the treatment made a difference or not. The cancer tumors had not expanded or enlarged, but they had not decreased either. It remained unclear whether there was any effect resulting from the transplant treatment at all. I just re-read Ellie's quote that I jotted down that day: "I survived the T-Cell transfusion, the high-dose cytosine, the IL-2 and all the side effects. I'll take "stable" for the next 30 years!" This disease has robbed her of so very much, yet Ellie's gratitude is always at the forefront of how she experiences life.  

In late January, David's wife Stephanie introduced us to some of her Broadway colleagues and friends who were traveling the country with the remarkably moving show, Come From Away, about the community formed when all of the international planes  bound for the U.S. made emergency landings in Canada on September 11th, 2001. If you haven't yet seen this inspiring and uplifting true story, it's worth tracking down the traveling cast to see it this summer. They are amazing!

In February, Ellie’s left leg became significantly inflamed and the pain in her back and pelvis worsened. These developments, together with other clinical symptoms, were an ominous sign. The worry and the pain didn’t stop Ellie from taking part in Joey’s winter break. She wrapped the swollen leg in some extra-tight medical compression stockings and took Joey to visit Katie at NYU. They enjoyed the excitement of New York during Fashion Week and the hysterical Broadway show Book of Mormon—a welcome break from appointments, treatments and scans. 

Another thing Ellie did to take her mind off the pain was read through medical packets from young researchers applying for grant funding for their cancer research at the Stanford School of Medicine. She and a panel of Stanford leaders met multiple times to analyze data and proposals and selected four more projects worthy of funding. The panel then invited the recipients in to meet Ellie in person to discuss their research, lab findings and successes. Ellie congratulated them all on being awarded research funds generated by the Ellie Guardino Research Fund for the Stanford Cancer Institute.

The breadth of the research Ellie’s grant has been able to fund now spans a wide range, including obstetrics, gynecology, radiology, hematology, lung cancer, data science and intervention. The grants are instrumental in fostering cancer research and innovation that are sure to lead to positive patient outcomes in the years to come. Several of us who shared in the grant meetings had to fight back tears as Ellie shared her experiences as a doctor, a researcher and a patient with her recipients and thanked them for dedicating their careers to medicine. The recipients certainly left the meetings inspired to get results to patients who need them.

In late February, Ellie shared in the 10 year anniversary of the Under One Umbrella fundraiser for Stanford Women’s Cancer Center at Bing Concert Hall with a private concert with Trisha Yearwood, Garth Brooks and Keith Urban, all of whom have been touched by family members in oncology care at Stanford.

In March, Ellie headed back to MD Anderson for MRIs of her brain, abdomen, and pelvis and a CT scan of her chest. Ellie was home with Jeff when she received the 12-week post-transplant imaging results: The scans showed that the cancer in Ellie’s spine and pelvis had grown. 

The MD Anderson doctors determined that T-cell therapy was not enough, and focused on adding some additional treatments. Ellie commented that this was a familiar approach she often used with her patients to keep spirits alive and maintain hope—to avoid concentrating on the cancer growth and keep caregivers focused on the fight ahead. The goal of additional treatments would be to proactively treat the growing cancer and control Ellie’s pain. 

Ellie’s team of oncologists, both Stanford and MD Anderson, discussed at length the pros and cons of radiation and immunotherapy and current early-stage clinical trials. Ellie has already received all of the approved PDL-1 and CTLA-4 drugs on the market, and we know that those scientific advances have significantly slowed Ellie’s cancer growth and extended her life. Despite Ellie’s career developing immunotherapy drugs and her experience getting them approved by the FDA, no recent immunotherapy treatments for advanced-stage melanoma have generated sufficient data to warrant approval at this time. 

There are, however, Phase 1 trials that have recently moved from lab to animals to humans that are on the horizon. In anticipation that these trials might provide future treatment options for Ellie, and because radiation has previously helped slow the cancer’s growth, both her MD Anderson and Stanford physicians agreed that radiation was the best option to try to control the growing cancer. The added benefit is that some data shows radiation stimulates the immune system as the cancer cells die, so it would be synergistic with the T-cells infused in December. Ellie was the very first patient to get the T-cells manufactured at MD Anderson with the cutting-edge procedure, and though she is thrilled and proud of what that will do to benefit future cancer patients, it would be far better news to us all if that treatment was deemed a success! 

Accordingly, in March Ellie began a six-week regime of daily radiation. She endured 30 successive radiation sessions at Stanford Hospital, with weekends off for good behavior. Multiple friends signed up to drive her and stay in the waiting room during her treatment, and others joined to pick her up, waiting in the “getaway car”  to allow Ellie’s quick escape from the hospital. The radiation caused nausea, pelvic pain and terrible fatigue. The side effects rocked Ellie’s spirit and faith in the system a bit, but she pushed through and even maintained a somewhat regular "Ellie schedule." Amid the six weeks, Ellie interviewed internally at Genentech and took on a new oncology leadership role aimed at developing a personal healthcare program to get the correct oncology drugs to patients with the lowest amount of toxicity and maximum effectiveness. 

When the six weeks of radiation finally ended, we all made an effort to celebrate the last days of radiation in a big way.

In June, we celebrated Ellie's birthday by attending the off-Broadway show Beautiful. 

Before the show, we had the opportunity to meet several leading members of the cast, including Sarah Bockel, who plays Carol King, and James Clow, who plays Donnie Kirshner. James shared a remarkable story with our group. One of his best friends on Broadway had been undergoing treatment for stage four breast cancer. Because of the drug Kadcyla that Ellie and her team at Genentech developed and brought to market, she is now in remission and singing in a Broadway show five days every week. He thanked Ellie and surprised her at the curtain call by having the entire cast shout, "Happy Birthday Ellie Guardino!" from the Golden Gate Theater stage!  

After the daily radiation treatment, Ellie worked to determine the next step. Radiation is a directly targeted treatment that attacks specific tumors; in Ellie’s case in the spine and pelvis. Despite the effort she put forth in her daily radiation regimen, she and her medical team also made a plan for additional systemic treatments, to catch cancer cells growing elsewhere throughout her system. 

The tumor sequencing analysis at MD Anderson performed at the time of Ellie's surgery showed that her tumor has a CDK 4/6 mutation. Ellie’s experience in the Her-2 breast cancer world taught her about an FDA-approved drug for breast cancer that treats this very mutation—a drug that Ellie has used in her own practice. She and Dr. Hwu at MD Anderson discussed the drug at length. Like chemotherapy, it is focused on halting cancer cells from cycling through the body. Despite the fact it’s not yet “approved or validated” for melanoma, Ellie decided to put it, and herself, to the test...

The result was another setback. The drug impacted Ellie’s bone marrow, and her blood counts and platelets slipped to dangerous levels, leading to hospital visits for IV blood transfusions. She had severe bruising, blood flow issues, and anemia, and thus had to discontinue the drug after a few short weeks. Another creative solution that just proved too toxic for Ellie's body. Though she wasn't shocked by the results, the reality of the side effects and the resulting lack of a clear medical path forward made for a severe emotional hit. Ellie told us she would focus on having faith over fear, and using her brain (her blessedly cancer-free brain) to focus on priorities like family, friends, and preventing other patients from going through the brutality of late-stage cancer. 

In mid-June, Ellie and I visited MD Anderson again for yet more blood work, CT scans, and MRIs. She and Dr. Hwu decided that once Ellie’s counts recovered, it would be time to revisit the combined immunotherapy that had hospitalized her last year: the Array drugs, B-raf and Mec. And so, right before the 4th of July, Ellie started the drugs in the hospital’s IV Infusion center. For safety during the first three days, the drugs were administered in the hospital with a one-to-one patient/physician ratio. Ellie received a reduced dose to start and is now up to the full dose and can take the medication at home. The drugs are horrible, as are the side effects—including neuropathy in Ellie’s legs, fevers, and nausea—but last night as she choked down eight huge pills, she made a point of saying, “They are keeping me alive!”
 

When I reflect on the combined therapies and treatments Ellie has found and signed up for in the last three years, I can’t help but feel awestruck over the gift she has given us all—her family, friends, colleagues and patients, and even cancer patients in the future who will never know her.

Mostly, she has given us the gift of time.   

The day we learned about Ellie’s recurrence in February 2016, we knew “metastatic melanoma” was fatal. But Ellie’s openness to staying ahead of treatments, trying early-stage therapies, and taking medical risks has helped her leapfrog from one cancer-fighting drug to the next. The treatments she has endured over the last six months were not even available in 2016—and yet they have kept her cancer at bay to the point where she can still be present for the many milestones in all of our lives.

Right now treatment-wise, in addition to reducing growth of the cancer, the focus is to reduce Ellie’s constant, debilitating pain. She is considering a potential surgical implant in her spine, an invasive and risky procedure introducing the possibility of infection, but one that could be worth it if it can reduce her pain level. 

But reducing pain isn't only a medical process...

People always ask me what they can do to support Ellie and her family, and how they can help add more joy to Ellie’s life. One former patient (and now friend) of Ellie’s recently sent her a beautiful but heartbreaking letter. Five years ago while battling breast cancer, the friend was sent to Ellie for a second opinion. Ellie reviewed her original scans and uncovered something that had been missed: her breast cancer was Her-2 positive, and thus she was eligible for a promising clinical trial. That trial led to her remission, and Ellie saved her life. Shortly thereafter, her husband died suddenly. The letter shared that thanks to Ellie’s thorough medical intervention, her five children still have one parent, and she had the opportunity to walk her daughter down the aisle at her wedding last weekend.

With this in mind, I'm asking for your stories of people who have been changed, cared for or inspired in a meaningful way by our Dr. Ellie Guardino. If you know patients, friends or family members who Ellie has helped or motivated, please encourage them to write down their stories and email or mail them to me, Ellie or Jeff. Jeff and I will compile them all into a book for Ellie to enjoy with her family this summer while she sits in her yard, under the pergola, reflecting on all the good in her life. 

Ellie knows we are reaching out for anecdotes about her life—it’s not a secret! She resisted at first, but we reminded her of the warmth she experiences receiving texts and notes from people who have positive feedback about the impact of her career advice, medical research, treatment recommendations, parenting advice and more.  At this phase in her journey, knowing that her work, advice and strength has made a difference is of absolutely paramount importance. 
 

Thank you all so much for being here in this with us.

Love,

Lynda