UPDATE MARCH 15, 2023

Thank you all for taking time to read my family’s story, share our story, send encouraging messages, and donate to our GoFundMe. My brother and I are truly in awe of how much support we have received. I wanted to take some time to update you on the status of my mom’s condition and give some life updates. To be honest, I've been drafting this update for a while now. As I finally finish this up, I’m realizing it’s been a little over a year since I first posted this. People often ask me how my mom is doing and it’s been hard to answer that. She’s somewhat okay, but somewhat not. There seems to always be a battle we are fighting and what I’ve learned is the one constant is that the disease is ever-changing.

If you recall, the purpose of my mom’s surgery back in January 2022 was to (1) replace her missing skill cap (2) potentially take out a cancerous growing mass. During surgery, a pathologist and the neurosurgeon looked at a biopsy of the mass and the immediate results were inconclusive. They could not tell if it was scar tissue growing or a cancerous tumor. They had to send the sample through a more detailed pathology which could take up to a few weeks. Therefore, the surgery was actually the somewhat “simpler” surgery we had in mind where they only replaced her missing skull cap. Surgery was very successful and she recovered well. We were able to go home after one night in the hospital.

We got the pathology back not too long after and surprisingly, we were told there was no cancer present in the sample they took. I remember sitting in the doctor’s office just bewildered. How is this possible? There wasn’t a sudden joy, just more questions about what the future would look like. It’s hard to be completely positive about things like this because GBM is a type of cancer that always comes back. However, we were of course still happy with this news. I was happy she didn’t have to go through any more treatment or surgery for the time being and have time to recover. Also, it was amazing to see her head without the dent from the missing skull piece again. I could tell my mom even began to feel more like herself. Her hair started to grow back a lot more and she just seemed happier.

The next few months were mostly smooth sailing. We had an appointment once a month with our oncologist and we had MRI’s every 3 months. She was doing really well. Throughout this time, there were minor things that happened that I couldn’t help but question after this crazy journey. I noticed random instances where she had issues with word finding and times she seemed more lethargic. All things that bring me back to when she was first diagnosed. I’m fully aware that I am more hypersensitive to these things, but I always relayed these things to our doctor and we continued to watch her.

In early summer, we had another MRI and compared to the one after surgery, there were changes. Her brain was more inflamed. I knew the changes I was noticing about her were all due to this. The hard thing about the brain post all these surgeries and treatments is that it’s hard to read from a scan. The doctors can’t easily tell if these changes are radiation defects (scar tissue and inflammation from radiation) or a cancerous mass. The only certain way to know is to do a biopsy, but the last thing we all want is another surgery. At this point, we’ve heard this debate so much from our doctors and we again entered the unknown.

The doctors said because my mom is doing well despite these changes in the scan, it’s up to her how she wants to proceed. She can just continue to live as is and we follow up if something happens or we notice a big change. The other option is to do a “simpler” biopsy where they don’t have to perform surgery and don’t have to open her up again. They would stick a long needle through her head and grab a little bit of the mass and send it for another pathology. From there, we would have to decide what we want to do after getting results.

While all of this happened, we started to plan a trip to Korea. Her health was better overall and I was able to secure time off. When we found out about the changes in her brain, I couldn’t help but think about our trip. I was so excited for her to see family again and get a little break from life here. After discussing with all our doctors, we decided to hold off on the above and make the trip to Korea first. This trip was very important to us and she was doing well so the timing was perfect. We planned for another MRI upon return. The doctors explained that if there was more growth or a lot of change, it would be an indicator that it’s more likely to be cancerous. If there was not a lot of change, it’s more likely to be post-radiation defect. We decided to see the results of the scan after the trip first and make a decision on how to proceed after.

After getting back from our trip, we did an MRI and the scan didn't show much progress in either direction. Based on conversations between the tumor board at the hospital, doctors believed it was more radiation defect compared to cancer recurrence. To help with the inflammation that was happening in her brain, they put her on steroids. When we did a scan after some time of using the steroids, it showed improvement and she was feeling better. This was another indication that it could be a radiation defect, so we decided to watch her again and repeat a scan in a few weeks.

During our next scan, the results were unfortunately not better. They saw more inflammation again. Once again the tumor board reviewed the scans and they continued to believe it was more likely radiation defect. On the same day of the scan, my mom had a very unexpected seizure which led to a sudden hospital visit. She had another seizure at the hospital and we had to stay a few days to watch her. They put her back on steroids and increased her dosage of seizure medicine. 2022 was so repetitive in this way. The question of the year was cancer or radiation defect. After all this time, the conclusion was that steroids help, but they seem to be a short-term fix.

Throughout our whole journey, we had the most amazing oncologist and around this time, as we reached the end of the year, she left the practice due to her own family matters. She recommended that we go to UCHealth as she felt they have more options for treatment. Our oncologist was getting concerned by the pattern we were seeing of the inflammation returning and felt we were going to need to start some sort of treatment plan. After a long journey with Centura Health, we made the switch. UCHealth has been a good change in many ways. Because it’s larger, the doctors are very specialized and we have a new neuro-oncologist, who only focuses on brain and spinal cancer (previously our oncologist was not as specialized in one type of cancer).

While making this transition and as we entered 2023, we started a new drug called Avastin in hopes that it will help the inflammation. This drug is used for GBM often, but it’s not chemotherapy. It is given via an IV once a month and we plan on 4-5 doses. The drug prevents blood vessels from forming in the body. In short, for cancer to survive in the brain, it needs blood and it forms blood vessels on its own to grow bigger and stronger, so this medicine helps prevent growth. So far we have had no side effects and during our most recent scan, the inflammation in her brain was much less than before. My mom noticed that her lethargic feeling decreased as well. This adds to the theory that this is more likely to be radiation defect. Of course, it’s never smooth sailing, as there continues to be unknown issues. We’ve seen a small uptick in seizure activity and it may be a symptom of the disease we just have to live with.

To add to the weight of all this, we lost my grandpa (my mom’s dad) very recently. I learned of the news first within my immediate family and before I could even feel sadness, I could only think of the effect this news would have on my mom as stress and anxiety only worsen her condition. My grandpa, along with my mom’s immediate family, are all in Korea. It wasn’t feasible to make the trip out so last minute and we knew it would be hard on my mom as well, so we were unable to attend the funeral. My mom's siblings also urged my mom to stay back and take care of her health. While we are saddened by the sudden loss and the fact that we can't be with our family in Korea, my mom and I both shared the thought that we are so happy to have been able to see him not too long ago. That would not have been possible without this GoFundMe.

As you can tell from this recap, it’s been another roller coaster of a year. We started the year thinking that she could be cancer free only to be devastated that she may not be a few months later. My brother reminded me how we were told she may not live past a year with this diagnosis initially, yet here we are at 2 years past the diagnosis, entering year 3. I have to remind myself of the good things too. We are very happy to have had a successful 3rd surgery and to have had a smooth recovery. She’s not 100% percent in energy and health, but she’s been a consistent 70-80% which is honestly amazing considering the disease and everything she’s been through. We are thrilled the Avastin treatment is helping to treat the unknown inflammation in her brain.

Many of the highs of 2022 were thanks to you all. First and foremost, we are so overwhelmed with joy that we were able to take my mom to Korea. The GoFundMe allowed me to stay a part-time caregiver longer and supported our whole family with financial needs after a year of spending half our time in the hospital. Additionally, I mentioned in my last post that we wanted to do a photoshoot. Some of my amazing friends organized this or my family. We had so much fun taking family photos and I’m glad we could capture my mom in the moments she was doing well.

Thank you all again for your thoughts, prayers, and overwhelming support ❤️ If you want to continue to support us financially, the page is still active, and we will use the funds to continue to support our family and do more fun things with my mom. However, we are more than thankful already and will be forever grateful for our community during this time.

Photo from our photoshoot

Photo of my mom and aunt in Korea in their hometown

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JANUARY 10, 2022

My name is Jennifer and my mom, Yeon Hee, was diagnosed with Glioblastoma Multiforme (GBM) in January 2021. GBM is a malignant and fast growing brain tumor with no cure. Many only have a few months of life after being diagnosed. Per the National Brain Tumor Society, “Glioblastoma (GBM) is the most common, complex, treatment-resistant, and deadliest type of brain cancer, impacting more than 13,000 Americans each year. GBM can affect anyone, at any age – including children. It's taken the lives of too many across the country, and treatment options remain limited.” It hasn’t been easy to watch my mom fight this scary disease. She is truly the kindest, most hardworking person you’ll ever meet. She has sacrificed so much for our family, and it breaks my heart to see everything she has been through this past year. I’m still in awe of her never-ending positivity and strength that has carried herself along with my family after the diagnosis. 2021 has been a long and hard year for my mom, dad, brother, and myself. Please consider reading and sharing our journey with GBM below.

I still vividly remember the way her speech changed causing our family to be concerned about her health. A visit to the ER ended up revealing that she had a tennis ball size tumor growing in her left frontal lobe, pressing on her brain, and causing speech issues. It required an emergency surgery to remove the tumor. At this point, the doctors thought it was GBM, but they weren’t certain until they did surgery, took a biopsy, and sent it to pathology to confirm. Our lives were forever changed when the neurosurgeon came out after surgery to let us know the official diagnosis along with the possibility that she may only have a few years to live. After surgery, she was in the ICU for about 5 days.

Since then, things have been crazier than I could have ever imagined. Surgery went well and she recovered surprisingly quickly. She was supposed to start chemotherapy and radiation once she healed from surgery. Things took a turn when she started having abnormal knee pain and unusual face swelling that was severe enough to prompt another ER visit. They discovered she had an infection in her brain, so she was hospitalized again. They gave antibiotics and after being discharged, I continued to give her IV antibiotics through a PICC (peripherally inserted central catheter) at home. We had to do this 4 times a day at specific times, waking up in the middle of the night for some doses for 2 weeks.

Just when we thought things might be getting better, speech issues formed again, and she had another follow up MRI. Unfortunately, the infection had gotten worse. Cerebral edema had increased filling up the void of the tumor, giving similar speech issues as if the tumor was there. This required another emergency surgery to remove the fluid buildup from the infection. This was the start of surgery #2 and hospitalization #3. With this surgery, they removed some of her skull cap at the infection site to prevent further infection, leaving her with a dent in the front of her forehead. This resulted in a special helmet she had to wear as she was prone to getting her brain injured easily if she fell or hit her head in that area with no skull cap. They let us know that after all the chemotherapy and radiation, she would have another “simple” surgery to put a 3D printed synthetic cap back in that place. Once home, we had another hard 2 weeks of IV’s at home waking up at bizarre times to administer it.

Finally, things got a little better. No speech issues, no knee pain, and we had the infection under control. She was finally able to start chemotherapy and radiation in April 2021. We did radiation for 6 weeks straight, Monday-Friday, driving to the hospital every day. Chemotherapy was luckily through a pill, so she took that at home while doing radiation. After these 6 weeks, there was a month break followed by a 6 month cycle of chemotherapy only. It was 5 days of pills followed by 3 weeks off the pill, repeated for 6 months. Although there were some hiccups with nausea in the beginning, we found a good system with anti-nausea medicine and the breaks between each cycle of pills were very helpful to recover a little bit. We were excited to be done with all this early December 2021 and were getting ready to schedule a surgery to replace the skull cap. We thought that might be the end for now. However, the disease threw us another curve ball with its unpredictability.

Throughout this whole process, we were consistently doing MRI’s to watch the tumor. My mom has done about 15 of them to date. Things were starting to look okay until December 2021. She had an MRI after all the treatments, and they found something has been growing again. All the doctors could say is that it could be cancerous, and it could be brain necrosis, an after effect of radiation. It also could be both. The surgery to replace the skull cap will no longer be the somewhat simple surgery we had in mind. They will have to do a more intensive surgery to remove the mass and send it to pathology to confirm for sure what this growth is. The new year will kick off with a surgery #3 and hospitalization #4 on January 20, 2022. If the growth is cancerous, we will have to investigate more treatment options that may include more radiation and different forms of chemotherapy.

It’s been a tough year for my family. There have been a lot of life changes and a lot of stress and anxiety about my mom’s health. It has also taken a toll financially. At the beginning of all of this, I left work immediately to be with my mom for the first surgery and hospitalization period. Covid was and continues to be a weird and terrible time as we can only have 1 person in the hospital from 8am-8pm and it has to be the same person in a 24 hour period. It made most sense that this 1 person was myself compared to my brother or dad as I was already taking time off from work. My mom also needed help going to the bathroom and showering and she felt most comfortable with her daughter helping her. I took PTO off initially and then all the complications with the infections led me to take a Family Medical Leave of Absence (FMLA) for 3 months. At the end of my 3 months, I knew I couldn’t go back to work with the treatment schedule and with my mom needing 24 hour assistance at home, so I decided to quit work to become her full time caregiver. I took a break from everything to focus on my mom. This was a financial burden, but my brother and dad tried their best to support me along with unemployment benefits after leaving my job, but that wasn’t easy on them either.

As my mom got better and treatment was ending, I did start a part time job again to still have time to be home and take my mom to the countless doctors’ appointments she still has. We thought life was getting back on track a little bit. However, the shocking and sad news of growth and another surgery is weighing heavy on us. It’s been hard for all of us to stay afloat financially and mentally this past year and now we will start the new year with another difficult surgery, and we don’t know what will come after it. I am already planning to take time off for surgery and hospitalization as the Covid rules still apply. All of this being said, we would greatly appreciate any help to help us get back on track at least financially.

In addition, your donation will help our family do some fun and exciting things with my mom. We don’t know how much longer she might have fighting this tough disease, so we want to ensure she lives her life to the fullest. She has spent her whole life working to support my brother and myself and hasn’t had the time to do things for herself. Some things we have planned are a family vacation to Hawaii to relax, taking her to Korea to see her family that she hasn’t seen a lot since moving to the states, family photos which we haven’t taken since I was a baby, and anything to increase the quality of her life living with GBM.

Thank you for taking your time to read our story and for supporting us - whether that is simply taking time to read this, sharing this page, or donating. Your support means so much to me and my family. I will update you all on how surgery #3 goes once we have more details, but until then, please keep my mom in your thoughts and prayers as she continues to fight the battle with cancer.