What Happened Part 3

In some ways, the ventilator was really helpful. My mom was sedated and not in pain. She no longer had panic attacks, wasn’t feeling her hunger and her lungs could have a chance to repair. While the ventilator brought some relief, it also brought along numerous complications. A few days after she was put on the ventilator, her kidneys began to fail and she needed dialysis. Luckily, this lasted only one week before her kidneys rebounded. Her hands and arms started swelling and so my sister and I would move her and massage her extremities daily.

After 10 days of being on the ventilator, the time came decide whether to give her a trach or not. If she got a trach, she’d also get a feeding tube. The doctors would then wean her off of sedation and she would likely have to go to a LTACH (Long Term Acute Care Hospital), somewhere she really didn’t want to go. My sister and I considered it for a long time. Not getting a trach would mean death. While we were considering the choice, the pulmonologist told us that my mom had already made the decision. She asked that she get a trach if she needed it. It was a relief that she had made the decision and that burden wasn’t on us. 

After she got her trach and the feeding tube, the doctors tried to wean her off sedation. Many people wake up quickly, but for her, it took a few days. When she finally woke up, she couldn’t move at all. The doctors were worried that something had happened and neurology joined our team. They found that her nerves and muscles functioning and told us that she had “critical illness.” This basically meant was that she had been in bed not moving for so long that her muscles just deteriorated to the point of immobility. We pushed for PT and OT, but they said that the insurance won’t cover therapies if the patient can’t participate enough. I also thought this was was crazy. The person who needs therapy the most doesn’t qualify. That was when my sister and I decided we would do passive range of motion every day. We worked on it daily for the next many months. 

Two days after she woke up, my mom started having seizures. The seizures wouldn’t stop and could not be controlled by typical medications. In order to stop them, they had to sedate her again. It took neuro a while, but finally the seizures were controlled. 

Then, my moms hemoglobin started to drop and the doctor concluded that my mom had internal bleeding somewhere, likely caused by the high dose of steroids. My mom started getting blood transfusions periodically. 

Each day, either my sister or I would be with my mom. We did range of motion, advocated for them to wean the vent to see if she could tolerate it, we brushed her hair, brushed her teeth and cut her nails. I sent a text out each day to her friends and family with updates. Even if my mom was asleep, she was never alone. I think it helped her get better care.

Now, the time came where the hospital had to discharge her. She was stable from their stand point. No more acute issues. She still couldn’t move, she was on and off with her sedation (more asleep than not) and was still on the ventilator (though with only partial support). I hated the idea of moving her. She would have to change doctors and an LTACH doesn’t have access to emergency interventions the way a hospital does. However, we didn’t have much choice in the matter. Case management told us that she had to leave. To ease my concerns, they told me that I could always request for my mom to come back to the hospital if she got worse. 

My mom was discharged from the hospital on 10/3/2023. She would end up returning 10 days later through the ER at a different hospital. 

What Happened Part 2

Once my mom was on the right antibiotics, she started feeling better. I visited her every day. We would talk, play games and drink coffee. A few times, I actually took a nap and shower in her hospital room. It was a small reprieve from being a mom of two little ones, always on the go. Five days later, the doctors were ready to release her. They didn’t give her any oral antibiotics or other medications to take home, which was concerning. But she felt well. She was well enough to drive herself home, just like she drove herself there. 

She was so excited to be home that day and started trying to get some things done at home that she neglected while in the hospital. However, the next morning, my mom called me to say that she didn’t feel well. She was okay, but needed to relax that day. Her oxygen sats were dropping and she had a low grade fever. Luckily, she had a portable oxygen machine that she purchased when she had COVID-19 in 2022 that she could use. The Ibuprofen was keeping her fever at bay. She told me not to worry—she just wanted to keep me updated.

About 8 hours later, I got a series of 3 texts that made my heart drop. 



“very sick”

I was at a play date with my kids when I got the texts. I quickly left, met my my husband to dropped off the kids and rushed to her house. When I got there, my mom looked terrible. She was in the recliner that my dad used to always sit in, but she couldn’t get up. When I talked to her, she seemed impaired and confused. I asked if she had taken any Ibuprofen or Tylenol for her fever so far today and she said, “no.” She told me that she wasn’t able to get up to get it. I told her that I needed to take her back to the hospital and she had to help me get her to the car. She tried to get up. I tried to pick her up. But we could not get her up. If I couldn’t get her up, I would have to call 911. When I told her this, she said I couldn’t do that. An ambulance would take her to the closest hospital—one that she didn’t particularly like. As a nurse, she knew the hospitals in the area. She said that se wanted to go back to the hospital she was just at, where he doctors knew everything about the disease she had. I remember thinking that if my dad were here, he could have helped me lift her. We could have done it together and gotten her in the car. But, it was just me now and I needed help. After a little more time trying and having no success, I called 911.

When the paramedics showed up, they took her vitals and checked her out. I explained the situation and asked if they could help me get her into my car rather than taking her in the ambulance. They said that, so long as she can help a little and they aren’t carrying her against her will, they could get her into my car. With the help of three big men, my mom was finally in my car and I could take her to the hospital of her choice. Before I left, I asked the paramedics a question I really shouldn’t have to think. “How much will this cost me?” A question that now seems silly since she has had a total of 9 ambulance rides, 8 months of hospitalizations, 5 ER visits and hundreds of diagnostic tests with much of the above mentioned not being covered by the health insurance as ‘medically necessary.’ “Its free, ma’am. So long as we don’t take her, we don’t charge.” That was a relief. 

Once we got to the hospital, I got her in a wheelchair and pushed her into the ER. Even though the room had about 6 other families waiting, we were called back first. She was admitted to the ICU with pneumonia and now COVID-19. She likely contracted COVID-19 during the first five day stay. The pulmonologist on the case told her that, had I not come to get her, she would have died at home that day. (We started referring to him as the “Dooms Day Doctor” because he always told my mom the brutal truth. We have since come to love him and would be our top recommended doctor.) She restarted the IV antibiotics, but her oxygen demands were so high. She was put on high flow, 70 liters. For reference, she was previously discharged on 2 liters the day before. She got a little bit better and the doctor said that she narrowly missed going on a ventilator. 

Over the next few days and weeks, she would have bad days and okay days, but she didn’t really get any better. There was no more playing cards or drinking coffee during this hospital stay. She was so sick and so scared. Since the antibiotics didn’t seem to help too much, they did a bronchoscopy to determine what was in her lungs. This showed that she had three different types of pneumonia, fungal, bacterial and viral. I still visited my mom every day, but it was harder on her. She had to be on BiPap and was on a schedule of proning ever two hours. This meant that she laid on her stomach so that her lungs could expand more. Studies showed that proning was good for COVID-19 patients. Rather than talking, we communicated through text or by writing on a dry erase. 

The doctors kept trying new medications and new strategies to help her recover. My mom even found a study where very high doses of steroids helped a COVID-19 patient turn a corner with their lung damage. This was similar to how she approached her cancer diagnosis. 23 years ago, she did research and found a treatment plan for her Stage 4 Signet Ring. The doctors followed her recommendation with the steroids, but it didn’t help. Talks of a ventilator were brought up often, but she always said she wanted this as a last resort. 

Her breathing got worse and worse. She was now on constant BiPap, so a mask which high flow oxygen was pushing into her. This meant she couldn’t eat or talk. The air was so dry and powerful, she had frequent nose bleeds. She started having panic attacks where she felt like she couldn’t breathe, even though her oxygen was in the high 90’s. 

On 8/26/23, my mom texted my sister and me. She was ready for the ventilator. She just couldn’t do it anymore. She said she would wait for us and her pastor to visit and then she wanted to go on it. My sister visited her first while I stayed with my kids. As we were trading spots, my mom texted me to say that she wasn’t sure that she could wait for me to come anymore. She wanted to go on the ventilator right now. I made it there just in time. The last thing she wrote to me is “I think Jesus will cure me of this.” She felt confident that her life here wasn’t done and that she would get better. It’s what made going on the vent okay to her. Sometimes I look back on that and think God misled her. I guess it depends on how you view it. She is in heaven now, with a new body—cured of this illness. However, the next 8 month just seems cruel and it was hard to not be mad. The hope she had, was it false hope? 

What Happened Part 1

My name is Chelsea Burrell. I am writing this as my first ever blog post. My mom is Carolyn Langlie-Lesnik, the person you have come to know through you or your loved ones cancer journey. Many of you know that my mom passed away on 4/25/2024. If you want, you can see her obituary here. We also recorded her service if you’d like to see it here.

I want to first start by apologizing for everyone who reached out to my mom via email, FaceBook or her blog and never received a response. I know everyone here is facing a hard battle and to not have a response is discouraging. I will do my best to make sure this is not your experience in the future. 

I wanted to share what happened to my mom throughout this journey. Maybe this is as much for me as it is for you. For a little context, I have one sister. I am 33 and she is 34. We are both married and I have two daughters, ages 1 and 3. 

I think the story begins in 1991. My mom developed rheumatoid arthritis soon after I was born. The treatment that put her RA into remission caused her to become immunosuppressed. Despite that, she never really got many severe infections. That being said, when COVID-19 hit the country in 2020, she knew she had to be very careful. She didn’t have much of an immune system and live vaccines didn’t work on her. She eventually contracted COVID in February of 2022 and was hospitalized for a month. During that time, my dad was with her every day. She remained on supplemental oxygen for the next 8 months. My dad always took care of my mom. He showed loved through acts of service. 

In July of 2022, only a few months after she contracted COVID-19, my dad passed away unexpectedly from a heart attack. I know my mom didn’t share this with many people, but it really tore her apart. It made me think that losing a spouse must be one of the hardest things you can go through—particularly when your kids are grown and out of the house. My parents were both nurses. They agreed to both start working part time so that they could spend more time together. Ironically, they both would joke, that when the time came, my mom would go first. She has had so many health scares throughout her life and has come out of all of them unscathed. At some point she couldn’t keep getting so lucky. When my dad passed away suddenly, I think we were all in shock for months and the grief was overwhelming. He seemed so healthy. He worked out regularly, was a thin/fit person and was full of so much life. After he passed away, I saw an article in a magazine about “How to Live Longer.” The article was about things you could do to extend your life  (diets, exercise, purpose, community, etc.). It made me so mad. I remember thinking that you can do everything right and still die prematurely. What is the use in articles like this?

My mom and I were always close. Once my dad passed though, we began to see each other daily and talk for hours a day. We were both grieving and I couldn’t stand the thought of my mom being alone. 

As the one year mark of my dad’s passing was approaching, my mom decided that she couldn’t be in the area for it. My dad’s birthday was on the 4th of July. In 2022, he had a heart attack on the 3rd and passed on the 5th. My mom couldn’t imagine being here for the first anniversary of his passing. Especially in the United States where fireworks (which used to be a celebratory reminder of his birthday), would now just be a sad reminder that he isn’t with us. My mom had always wanted to travel abroad and so she decided that now was the time. As a professor, she had summers off. She decided that she would go on a  cruise to Europe in May of 2023 as soon as the semester was over. She then scheduled a trip to Africa from 7/1/2023-7/10/2023, completely missing the anniversary of his passing and all of the fireworks that would go with it. 

We were told that the first year after his passing would be the hardest. I remember after the anniversary of his death, we expected it to suddenly get easier, but it didn’t really make a difference. There was no magic date where it got easier. Little did I know that, in my case, life would just get more complicated. Eventually grieving my dad took second place to caring for my mom. 

The day after my mom returned from Africa, we went to church together. After service, she told me that she wasn’t feeling well. I encouraged her to go to urgent care. If she waited too long, she could get really sick. She went to urgent care the next morning and they found that she had pneumonia. They prescribed antibiotics and released her. After a few days, she was still very sick. She had high fevers and her oxygen was in the low 90’s. She went to see her pulmonologist who prescribed stronger antibiotics. He said that if she didn’t get better, she would need to go to the hospital for IV antibiotics. A few days later, still feeling very sick, she took herself to the ER. She was admitted to the hospital that day.