colorful
thoughts
Time Warp | 4/17/2022
By Erica Olenski-Johansen
Hospital life is a time warp.
If you're lucky, you get a room with a view. Seeing the sunrise and sunset certainly helps, but if you ever wanted to stay awake and feel exhausted at the same time, spend some time overnight at a hospital. I swear time moves differently here.
It looks like another night here is ahead for us, but the great news is the scary scenarios we were dreading earlier this week have all been ruled out. Aug is back to moving around like normal which makes my mama heart happy! We are on "contact precaution" though, so unfortunately we don't get to enjoy some of the more fun parts of the hospital amenities this visit.
Continuing from my "must bring" list the other day, I have a few more additions...
What To Pack Overnight At The Hospital: Oncology Mom Edition
1. Reusable coffee thermos. This one is everything here. Most of the coffee stations have styrofoam cups so having something to keep your coffee warm with a top (because, kids) is particularly helpful.
2. Eye mask (& earplugs for ICU stays). The hospital can be loud and bright, even in the best circumstances when you have some privacy and lights out at night. Inevitably someone will come in and turn a light on while you're sleeping and the eye mask makes the world of a difference for getting quality rest.
3. Microwavable dish that can double as a popcorn bowl. Styrofoam plates and bowls are often the only available option on the floors so having a dish to reheat food safely can be useful. I love a larger size one that I can use as a popcorn bowl as well (Auggie's favorite food).
4. Window crayons. These things saved my sanity during our long inpatient treatment stays years ago and are the perfect way to personalize the room space. Early on I learned that often the nurses pay out-of-pocket for the crayons and in the shared box, many of the critical colors were missing. So, now I bring our own with us. One day, part of my vision for @augustsartists is to help make these available to all families who end up inpatient because of their healing impact.
Thank you all for the love & positive vibes this week.
Mothering a Rare Disease & Reflections on Rare Disease Day 2022 | 2/28/22
By Erica Olenski-Johansen
“The gem cannot be polished without friction, nor man perfected without trials.” – Seneca
...
Motherhood can be isolating. Ask any mom – we all know this. We blog about it, post about it, and sit with ourselves reflecting on it. But motherhood with a #raredisease – either caring for someone with one or managing one ourselves – can be exceptionally isolating.
This is why it is so important to share visibility into what life looks like living with a rare disease – or in our case – multiple rare diseases and conditions.
I (enthusiastically) welcome the opportunity to share what we know about the #rarediseases we have become intimately knowledgeable about:
• Anaplastic ependymoma of posterior cranial fossa
• Pediatric ischemic brain stem stroke
• Profound sensorineural hearing loss
• Bilateral vocal cord paralysis resulting in tracheostomy and gastronomy tube (g-tube) dependence
• Lagophthalmos
• Alopecia Universalis
Life with a rare disease can be challenging, but it can also be as fulfilling as life without that level of complexity.
I’m hopeful that the awareness around these rare diseases, and others highlighted during #RareDiseaseDay, will help support a society more accepting of people who look like my son so he and others can reach their brilliant potential.
A Vignette of Life as a Pediatric Cancer Mom | 2/25/2022
by Erica Olenski-Johansen
Her faded sweatshirt read, “we need darkness to see the stars.”
I met Ashley yesterday while hiding in the hallway just outside our room. I had been fighting with August for at least 20 minutes to keep his pulse ox on his toe and oxygen connected to his trach. I was at my limit. I had been crying and needed to step away for a moment. You know the headspace you get when trying to console a newborn at 3 a.m. for the 20th time? That’s where I was. Except I was fighting with a three-year-old cancer and stroke survivor. I was exhausted and defeated. He was relentless.
Ashley was sitting on the ground in the doorway of the room next to us, encouraging her son, Pierce, to take steps in the hallway.
Meeting parents on the oncology floor is an exceptionally weird experience. It feels a little like a college dorm in some ways. Everyone is shuffling around in their sweats and pajamas, bags under their eyes, and usually mumbling something that sounds like, “more coffee.” The whole vibe is strangely familiar but in a backward, twisted kind of way. More like a dorm in The Upside Down from Stranger Things or the nightmare version of déjà vu.
But, Ashley and I exchanged smiles that made space for us to exchange pleasantries.
“How long have you guys been here?” I asked, making small talk.
“About six and a half weeks. You?” she replied.
“Only a week or so this time, but we spent many nights here on this floor a few years ago,” I explained.
I know the darkness that her shirt referenced. I’ve slept in it. I’ve tried to manifest positive outcomes with my tarot cards in it. I’ve been consumed by it. Nearly three years ago, the life that I had poured myself into creating most of my adulthood was obliterated within a few hours. Thankfully, that memory is burning into my mind more like a dream these days than a threat, but I still recognize it when I see it.
“He’s so sweet. How old is he?” I asked.
“He just turned two at the new year. He was diagnosed just a few days before his birthday.”
“Do you mind me asking about his diagnosis?” I asked, nodding to Pierce.
“He has stage four liver cancer. But it has metastasized to his lungs,” she said.
“I am so sorry. Can I give you a hug?” I asked. I could see her vulnerabilities flickering in that moment.
“Yes!” she replied without hesitating. We became instant friends.
As we got to know more about each other, it occurred to me that this was still their first stay in the hospital since finding out the news. The first six weeks. The first six weeks of this new life that only a few people come to know. Where were we during the first six weeks? They are a blur now, but there are things I won’t forget in that time. Those early days stay with you even if you can’t remember them in detail.
I do remember the layout of the room in the trauma ICU. I remember the consultation room we were taken to learn about August’s prognosis. That was the room in the back corner of the floor so no one could hear me scream, at least not clearly. I remember the couch I laid on during his surgery, where my sister rubbed my back and ran her fingers through my hair as I lay curled in a trance.
I remember the neuro recovery room we stayed in after he was stabilized from surgery. I remember meeting August’s oncologist for the first time and being told “he already knew who we were” and that he had been following this case from the moment he was admitted. I remember asking him if trying to continue breastfeeding would give my son a better chance at beating the odds ahead of him.
Ashley is just starting this journey with her son, but I could see the burning flame inside of her. She is still in those first six weeks. Her soul has been lit on fire. She is a mom fighting for her son and demonstrating to him at the same time his capacity to fight as well. She is evolving, in real-time, into a force that will power her family for the long journey ahead. I see myself in her. I was in her shoes nearly three years ago and still am stoking that fire.
You don’t have children and expect them to traverse an obstacle like cancer. You expect scrapes, bruises, maybe broken bones. At baby showers, you joke about “all the trouble your little boy will get into,” but you aren’t suggesting they fight for their life. You expect bullies and heartbreak and lessons in trust. You don’t expect what comes with a cancer diagnosis, like chemo and radiation. Those kinds of things aren’t for children.
Our day eventually blurred into night, which you don’t notice the same way when you’re in the hospital. I swear that time moves differently here. Somewhere in between Twitter searches for updates on the impending world war, the late-winter ice storm, and respiratory treatments, I fell asleep. I woke to muted voices casting shadows on the wall. It was 3 a.m. but something was going on.
I stepped out of our door to see the clinically bright lights on in my new friend’s room. The door wide open and a team of hospital staff were in the hallway. Somehow, I got a text from Ashley.
“I’m sorry if I’m keeping you up,” she said.
How on Earth did she have the ability to text me while her son was the center of everything in that moment? I should be the least of her worries.
Stunned, I replied, “Omg, no worries at all. Is everything okay? Do you need anything?”
“No, we are headed to the ICU,” she explained.
“I am so sorry, Ashley,” I replied. I know better now than to say anything more in these moments.
“I’m so worn out. How did you do it?” she asked.
I typed out so many responses to that question. This time, for these circumstances, she needed validation and a reminder of self-care before anything. She needed to know she is not alone. She’s allowed to feel scared, tired, and sad. And she’s allowed to take care of herself.
I said, “It is exhausting. You need rest. Will you be able to get some?”
What I didn’t say – but wanted to tell her – is that truthfully, I didn’t “do it.” I did what I had to do to support August and our family, but any sense of accomplishment about what we experienced feels inauthentic; for me at least. The primary accomplishment belongs to August.
The only genuine answer I could give is that I just survived; alongside my son. That was all I could do. And that is enough.
And she will do it too.
Child with An Aggressive Form of Brain Cancer Becomes A Story of Hope after Proton Therapy | Repost, 2/22/201
By Erica Olenski-Johansen
My name is Erica and my son August is an anomaly. August was diagnosed at 5 and a half months old with an anaplastic ependymoma, an aggressive form of brain cancer that is extremely rare in infants. The tumor was found by chance after we took August in for what we thought was a virus. During an examination, an ER physician suggested his soft spot felt firmer than expected. After a CT scan of his head, the doctor discovered a tumor was blocking the fourth ventricle of August’s brain, preventing the brain fluid from draining properly. The pressure was causing hydrocephalus and August needed to be CareFlighted to Dallas for emergency surgery to relieve the pressure. After an MRI, we were told the tumor was more extensive than anticipated.
The next Monday, August underwent a 14- to 15-hour brain surgery to debulk the tumor as much as possible. The tumor was wrapped around August’s spinal cord and brainstem, and there were a lot of potential complications. Miraculously, August tolerated surgery well and the surgeons removed a large portion of the tumor and sent it to pathology.
On August’s 6-month birthday, we received his diagnosis of anaplastic ependymoma. The diagnosis was devastating. Our physician, our neurosurgeon, and the oncologist who was brought in to consult met weekly at the hospital’s tumor board, a group of doctors who meet to discuss challenging or unusual cases. They brought August’s case to the group. Since August’s cancer was so rare in infants, a new treatment plan needed to be developed. The goal was to control the growth of the tumor until he got closer to one year old. It was then that proton therapy came up as a solution.
August immediately began an aggressive treatment schedule consisting of several rounds of chemo and intense drugs. After four treatment cycles, the doctors performed another MRI and determined that the remaining tumor was above the threshold that they felt would be beneficial for his outcomes with proton therapy.
At that point, August underwent a second brain surgery that was microscopic in nature, doing detailed work around the brainstem to remove the remaining tumor growth.
However, during that surgery August suffered a brainstem stroke, making his recovery longer than anticipated. August spent 38 days in the ICU before moving to another floor for more recovery. Once we were discharged, August was able to start proton therapy.
August started proton therapy and continued to recover well during radiation. During the six-week course of radiation, he gained 6 pounds, started meeting milestones and began sitting up unassisted again.
AND NOW, AUGUST IS THRIVING.
I felt it was important to share August’s story for a number of reasons. First and foremost is that my son has overcome so much, and we want to honor that. Honor not just his resilience, but also his spirit. I also wanted to reach people interested in proton therapy or those considering it for their own children. They need to know that there is a treatment option that can help.
I want August’s story to reassure parents that there is a path forward. When you hear a story of someone else’s success, it helps you build your courage and strength. I think it is important to share August’s story because he deserves to have his story told. Our family hopes to inspire others to be proactive in seeking care.
Fueling Hope and Healing Through Family-centered Advocacy After Pediatric Brain Cancer | REPOST, 8/1/2019
by Erica Olenski-Johansen
Despite having spent nearly a decade of my career in the business side of healthcare, my #WTFix healthcare experience began only last year. On May 17th, 2019, my 5-month-old son was diagnosed with an aggressive form of brain cancer called anaplastic ependymoma. Thankfully my son, now approaching his 2nd birthday, is thriving, the journey was extensive, exhausting, and required an enormous amount of endurance.
I’ve spent the larger portion of the past year advocating for my son while he underwent his cancer treatment including two major surgeries, four aggressive rounds of chemotherapy, and proton therapy radiation. Like many cancer treatment experiences, there were a number of unexpected complications from his treatment including a brain stem stroke (during his second brain surgery) and vocal cord paralysis resulting in a tracheostomy and g-tube dependency. Throughout this journey, I have become exceptionally engaged in my son’s care and rehabilitation and serve as an extension of the care he receives from his care team.
It has been eye-opening to me that, despite being previously informed on healthcare delivery and the overall mission of the patient engagement movement, I never truly realized how much that initiative is still “swimming upstream” within the current healthcare dynamics – especially in the context of complex care – until I experienced it firsthand. I am now passionately exploring ways to help ensure that all children who receive care can have the same quality of experience with or without having an engaged, advocating parent involved. My son has had exceptional outcomes because of my advocacy, but not all children are so fortunate. Our children do their part in fighting for their lives and I expect that our physicians that care for them collaboratively match their effort in creativity/artfulness, seriousness, and enthusiasm.
Over the past year, I’ve found that provider teams, while doing the best they can, are woefully unprepared for dynamic parent involvement as well. There are have been numerous near-misses over the course of my son’s care including:
Not having a single room in the entire health system equipped to comprehensively manage the complexity of my son’s care (#WTF),
Having a negligent discharge experience that left us without our DME or skilled nursing agency informed of our discharge and with incorrect medication orders (#WTF), and
Not being taken seriously with on-call physician questions that ultimately resulted in my son being admitted with near-fatal hemoglobin levels (#WTF).
I don’t have a solution yet, however, the visibility and dire nature of these three occurrences have resulted in an invitation with health system leadership to advise on the family perspective as they develop an outcome-oriented complex care coordination program.
I am looking forward to attending the Patient Experience to understand what successes are occurring in the industry that can help to inform patient experience and patient engagement initiatives in the pediatric setting.
To learn more about my experience, please feel free to visit the CaringBridge site set up to chronicle my son’s journey.