BeWonderNow (23)

In Gratitude for my Care Team

My Open Letter to President and CEO Megan Remark, Regions Hospital

Dear Ms. Remark, 

I want to share with you the very good news about my patient experience at Regions Hospital. Please bear with me as my story will take quite a few words to fully share with you today.

I am currently a neuro-oncology patient at Regions, under the direct care of Drs. Peterson, Mendez and Schideman. I am 11 days into a 28-day regimen of radiation therapy as directed by Dr. Peterson and Dr. Schideman. 

Let’s wind back the clock about two months to May 2nd when I began my cancer patient journey at Fairview Southdale Hospital. On the afternoon of May 2nd, I had a completely unanticipated seizure while walking around Lake Harriet. Based on the EMT report, I was picked up by ambulance about 2 miles into my daily walk around the lake. Fortunately, it was mid-afternoon, and someone nearby called 911. Even more fortunately, I had recently programmed my health care agent and emergency contact Sandi Wewerka into my iPhone. Once at the Fairview ED, they were able to unlock my phone and contact Sandi and alert her to the situation. Sandi came immediately to my side to help sort everything out. 

A significant detail of my story is that Sandi Wewerka is the Director of the CCRC at Region’s Hospital. Sandi obviously knows her way around trauma and the ED and health care in general. When Sandi got to the Fairview ED, a scan had already been completed, and the radiologist interpreted a very grave prediction for me — stage 4 glioblastoma. At this point, no one explained the grave nature of my prognosis but instead asked me about my resuscitation wishes. As was clearly stated in my Health Care Directive, which Sandi had a copy of, I was “full code”.  I  didn’t yet realize that preparations were underway to rush me into surgery the following morning and that my expected odds of surviving surgery were grim, at best. 

Without going into all of the details of what happened next, Sandi became increasingly alarmed by some aspects of my care, and she immediately thought “second opinion”. I grew more scared by the minute and had yet to meet with a neurologist or surgeon.  As I was admitted to Fairview, Sandi worked the phones and her extensive network of experts through the night. By morning, she had rerouted my care from surgery at Fairview to an ambulance ride to Regions and a meeting with Dr. Mendez. 

Here’s where my outstanding patient experience begins and continues to this day! 

Please allow me to share a coincidental, and I believe relevant, sidebar to my story. I am a designer by profession and have evolved my practice over the years from graphic design into motion graphic design into many aspects of environmental and product design, user experience design and interface design. In the early 2000s, I saw an opportunity to explore patient experience design which led me to a number of research and design projects including an extensive patient experience study for Dr. David Abelson and Dr. Steven Connolly at Park Nicollet. We delivered the final presentation to the Park Nicollet executive team entitled: The Patient Experience Playbook. Growing out of this work, my partners and I also developed a HIPAA compliant patient texting service privately labeled CareWire which was piloted by Park Nicollet and Health Partners which is still in use by your organization. 

Getting back to my patient journey experience at Regions, upon my arrival at Regions, I was placed into the care of Dr. Mendez and his team including his P.A. Sarah Pachenko. 

On the afternoon of May 3rd, only hours after arriving at Regions, Dr. Mendez and Ms. Pachenko came to my room to examine me and discuss possible next steps, which included a follow-up contrast MRI. On Tuesday morning, post MRI, they returned to meet with me and, in discussion with Sandi and me, concluded that I could return home later that day to get some rest and get ‘my affairs in order’. The plan was that I would have a several diagnostic and preparatory tests, including a functional MRI and CT scan for surgical mapping purposes, in the coming days and would return for an awake craniotomy on Monday May 10th.  

I can decisively say that those recuperative days at Sandi’s, with good sleep, healthy food, lots of supportive and loving visits by friends and family, and my daily prayer and audio affirmations, dramatically shifted my perspective from fearful and grim towards hopeful and optimistic. Here’s a telling photograph of me as I’m being rolled into brain surgery on May 10th. 

And here I am, a few hours later, post craniotomy, in the Neuro ICU, so very glad to be alive.

Here’s Sandi’s recounting to my family and friends via text on 5/10: 

Good Morning everyone. Here is a little recap of the morning so far... 

arrived at the hospital at 0445 this morning. He spent 2 hours in pre-op getting prepped for surgery. I was with him the entire time. Lots of IV lines and another CT. He was wheeled into the OR about 5 minutes ago. The prep before the surgery starts in the operating room will take about 60 minutes. They will call me when they are starting the actual surgery and will keep me posted as they go at which point I will update you right away. 

He was in great spirits this morning. We listened to affirmations together and continued having lots of conversation about what he wants to do in the future. He told me about 4 times, “I feel strong today!” He looked great and was laughing and so personable with his treating team. They all work only with Dr. Mendez. The whole team is a fine-oiled machine! I feel so good that he is getting the very best care possible. 

He got to pick the music he listens to for the “awake” part of the surgery. He will be listening to Yo-Yo Ma. Spotify has a 3-hour play list. It would be awesome if we could all play it this morning and listen with him. I know he will feel our presence and support. Based on what I was told, this will be a long morning and he likely won’t be out of post-op/recovery until sometime this afternoon. 

Please send love and strength to him today however you do that... prayer, meditation, affirmations. He knows you all love him and support him and that is so important to him. ❤️

Feel free to call me or text me anytime you need to. 

Sending lots of love to all of you 🙏

The amazing news is that I came through surgery successfully. Dr. Mendez confirmed that my ‘stars truly aligned’ for me that day. He had successfully resected about 90% of my tumor and would send the tumor to Mayo for a full pathology report. Dr. Mendez offered encouragingly that I would soon on the road to recovery.

As it turned out, I headed home much sooner than anyone expected. Two days after my surgery, I met with my physical therapist. After she examined me and tested my mobility and balance, she said she saw no reason to keep me in the hospital any longer. I was able to balance on one leg and rise up on my toes and walk about the room steadily. 

Here is an excerpt from Sandi’s daily updates to my family and friends: 

Good Morning everyone. I just wanted to send a quick update. Scott is doing really well. Scott had a good night. He was on some drugs to keep his blood pressure down. It is really important after any head/brain trauma to keep the systolic blood pressure (top number) under 130. The medication really helps with that. He slept as well as one can in an ICU and remains grateful and so very positive. He also had an amazing chicken pot pie for dinner! No dietary restrictions! OT and PT came to his room today to do some tests and look at his ability to move around, walk, sit, squat and all of the other things you need to do to get around on a daily basis. They were very satisfied with his strength and balance... he was even able to balance on one foot! It sounds like PT will not need to see him again. The neurosurgeon’s PA is amazing and also came to see him today. The head bandages are off and the incision goes horizontally across his head. He will be transferred out of the ICU today to a step-down floor. They also think he will be discharged tomorrow!! Pathology to detect the tumor type is not back yet. I also found out that 10% of the tumor could not be removed because it is directly on the motor strip and would have left him permanently paralyzed. Once the tumor type is confirmed, we will meet with neuro-oncology to start talking about the appropriate radiation and chemo. We should know the tumor type by the end of the week. Please keep sending your positive vibes and love. He really feels the connection to all of you.

And sure enough, I headed home before 11 am the Thursday following my Monday morning awake craniotomy — a miracle by every measure! I remember Sandi telling me, “great job, checked out before 11 am!”

By this point, one can barely imagine all of the amazing Regions personnel who supported my healing journey. I even tried to keep a list by my bedside, but my list is incomplete and doesn’t even include the patient transport folks, the food delivery folks, all of the amazing techs who drew my blood and made so many scans possible, and the countless behind-the-scenes staff that read my scans and processed my blood, plus the folks who kept my room and linens clean, and the cooks in the kitchen…but here’s what I came up with, an incomplete list at best: 

My care team, first round: 

Lee Krelwitz

Cindy Peterson

Brenda Teeple

Sarah Pachenko

Karen Broich

Tenea Wilson

Carien Arellano

Xiongmee Chang

Paula Skarda

Richard Carr

Elizabeth Luzum

William Planton

Anthony Frattalone

Allison Scharfbillig

Theresa Strauss

Gabrielle Cain

Laurna Skeate

Matthew Semerad

Alejandro Mendez

Deborah Renner

Zachery Dahlheimer

Jessica Driscoll

Lengjhiah Moua

Jenna Nelson

Danielle Bjorklund

Solana Brinkman

Summer Johnson

Ashley Gartner

Whitney Gurtin

Kasey Stiff

Amanda Dorendorf

Paul Trust

Bjorn Allard

Margaret Knuth

Sara Lethert

Maryia Makarchuk

Kevin Collis

Incomplete as my list is, my message to you Ms. Remark is that every single Region’s employee, at every skill level and pay grade, everyone with whom I interacted during my stay helped me feel truly cared for, thoroughly supported, and completely safe. And this was just the initial step on my healing journey. 

Next, I’m off to Neuro-Oncology and the care of Dr. Richard Peterson and his team. Let me quote Sandi’s recounting of that experience, as shared with my family and friends: 

Hello Everyone. Scott and I met with the neuro-oncologist today for the initial consultation. I am writing to share an update. Not all of the pathology is back so the results are not confirmed however, they are pretty sure this is a grade 3 anaplastic astrocytoma but may also be grade 4. As you know, they got 90% of the tumor during surgery. The remaining 10% is on the motor cortex and cannot be removed without resulting paralysis. The cancer is incurable but can be treated to extend his life and the quality of his life. These tumors are treated surgically followed by a regimen of chemo and radiation. They are still waiting for additional results to determine the IDH mutation. Those results will determine the path that the oncologist chooses... radiation first and then chemo or both together. Radiation will be 5 days/week for 6 weeks. The first round of chemo will be 7 days/week for 6 weeks. After that, they will repeat the MRI. And so it will go for a while. The oncologist was clear that Scott’s life path has changed. Scott remains so brave and incredibly positive and grateful for the gifts that each day brings. His heart is wide open and curious. I’m really feeling proud of him. 

I know he would love to keep hearing from everyone. I will continue to send updates as they are available. Love to everyone ❤️

From Neuro-Oncology to Radiation Therapy and the care of Dr. Schideman and his  team I go. Along the way, I make two more unplanned stops at Region’s ED. The first time I go in, I am admitted and with a medium to low grade fever and a significant headache. After many tests, I am sent home with the warning to return if my fever exceeds 103. 

Within days, my fever spiked to 104.5, and I was readmitted to the ED on June 10th. During my five-day hospital stay, the personnel who cared for me grew and ultimately exceeded my ability to keep proper track of. I know that physician-led teams from numerous specialty branches of medicine were conferring around the clock to find a reasonable, and treatable, cause for my symptoms. 

That said, I will repeat my earlier statement that “every single Region’s employee, at every skill level and pay grade, everyone with whom I interacted with during my stay, helped me feel truly cared for, thoroughly supported and completely safe.”

After eventually being discharged with black and blue veins and countless punctures, and a diagnosis of “non-specific viral infection”, plus a six-day supply of doxycycline, I returned home and, on the expert medical advice of Drs. Matthews, Schideman, and Skarda, my radiation treatments were delayed until Thursday, June 17th. Ever since my Monday to Friday morning radiation treatments have been proceeding successfully, and the team, under Dr. Schideman’s leadership, is as truly wonderful as every single individual I’ve met at Region’s. 

In concluding my letter to you, Ms. Remark, I want to share my patient perspective regarding what you undoubtedly already know. You have a remarkably caring and profoundly high-functioning and complex organization. I have worked in leadership roles in highly complex organizations with over 100,000 employees, and I have led smaller start-ups of less than 25 employees, so I speak with a professional appreciation for what you and your team have accomplished. 

From the deepest and most grateful corners of my heart, I thank you and every caring angel working at Region’s Hospital for my lovely patient journey thus far. 

Should you or anyone be else interested in a more meandering telling of my patient journey thus far, on June 2nd I began a blog on my experiences with cancer and cancer care called BeWonderNow which can be found at: 

https://scottdanielson.substack.com/p/bewondernow?r=n8ebh&utm_campaign=post&utm_medium=web&utm_source=copy

With profound gratitude, I thank you. 

Scott Danielson