Inspirational Stories

I am writing this in 2022, but I never would have believed when acute lymphoblastic leukemia (ALL) struck my daughter in 2013, that it would feel like we were back at step 1.

So, back to the beginning. My beautiful daughter Kari had graduated from high school and was ready to face the world. She really wanted to join the military as her brother had done. She was incredibly athletic and had participated in track, cross-country, and even joined the boys wrestling team her senior year. She also started training in MMA, and I believe this definitely helped later on. There were subtle signs of cancer early, but we could explain them away as just being tired from training. At the beginning of March, it became more apparent that something was wrong. She was having trouble keeping up at her job, she looked pale at times, then one day her knees hurt so bad she could not walk. I took her to the clinic, and the nurse practitioner was not sure what was going on. She had a slight internal fever but was not warm to the touch. They took blood samples, gave her pain meds, and we went home. At 8:00 p.m. that night we got a call from a doctor saying Kari needed to go to the emergency room immediately. Her hemoglobin was 5.5, and she would need three units of blood that night. Although we had no idea what it could be, cancer never crossed our minds. Kari was able to get in to see the hematologist/oncologist in a couple of days. We met with Dr. Kiwan (love this man!) at Sutter Medical Center in Sacramento, California, and we were still hoping it was something simple like anemia. So many vials of blood were taken, probably everything they had just put in her in the ER! The results came back on April Fool's Day 2013, ALL. Besides the irony of the day, it was also a bad day to reach out on social media. Most of her friends thought she was joking! My daughter has the best sense of humor, and fortunately, we could laugh about it later, but her only tears came when Dr. Kiwan said she would lose her hair.

She started chemo in the hospital on April 14 with 60% blood cancer levels. Two days later, her blood cancer level was 0! We, including the doctor, knew she would make it. After her first round of chemo, the bone marrow biopsy showed remission. She completed the protocol for the second round, her spinal chemo, which was the worst for her, and then we prepped for her stem cell transplant. Her brother was a match. The transplant was at end of June; she was out in 17 days. She had slight graft versus host disease (GVHD), but low-dose prednisone took care of it, and she rebounded quickly. Every check-up showed good things. No cancer, blood counts recovered, donor cells hit 100%. Kari hit her five-year mark, and she was good to go! Happy ending, right? Then the worst year for everyone hit, 2020.

In January, before anyone had heard the word “COIVD,” Kari was still wanting to join the military. She was talking to a recruiter to see if it was possible given her medical history. It looked like it was a go, and she was so excited. She had also started school at UEI College for auto mechanics. About mid-January, she had cold-like symptoms with a really weird fever. We just thought she had caught something from school, but the fever was worrying. She would go from a normal temp to 102°, 103° in 20 minutes. At her school, they have a nursing program, so her teacher took her to the class to get her temp, and it was really high. She drove to the urgent care and had her blood drawn to see if she had an infection. We truly believed she might have COIVD at this point, but it was so new, no one was looking for it. I wish it was only COVID because the doctor called later, and her leukemia was back.

Dr. Kiwan is our lighthouse in a storm. He has made Kari his personal mission to give her a successful life. He has even called her his daughter! He was not too worried and said she would be fine. He started chemo on Kari, again she lost her hair, and again she easily went into remission. He did a donor leukocyte infusion (DLI), and all her follow-ups looked great. She was good to go again. Or so we thought.

Because of COVID and California being locked down, Kari could not go back to UEI (it was remote learning only, and that doesn't work for auto tech). The military was out for good because of her relapse, so she started looking at other states for schooling. She decided on WyoTech in Wyoming. She was tired of life passing her by. Her friends were in careers, married, and she had never had the chance to live on her own. With Dr. Kiwan's and our blessings, she started at WyoTech in January 2021. We were so sure her life had finally turned the corner, and she could move into adult life. In March, she came home for spring break. She said she had been feeling a little sick, but with Wyoming being a balmy -5 degrees, we thought she was just adjusting to the temperature change. The second morning home, she said her neck hurt. By that afternoon, you could see the lymph nodes bulging out on one side. We called Dr. Kiwan, and he had her come in right away. Can you guess the diagnosis? Oh yeah, just leukemia ruining everything again! This time Dr. Kiwan did not want to do chemo. He was trying to protect her from the damage, so he started her on a treatment. Kari was in severe pain, and it took longer than chemo, but eventually, her lymph nodes went down, and her blood counts looked good. She had another bone marrow biopsy, and it was clear. Remission again! She still needed to continue the treatment but could do so from home. At this time, Dr. Kiwan discussed CAR-T cell therapy with us. It seemed the best hope to keep her in remission. We met with a doctor at UC Davis because Sutter doesn't have a CAR-T cell program for over 25. But when we met with him, he said there was nothing they could do at that time because they couldn't find any cancer in Kari, and you needed a few cancer cells for the treatment to work. Ugh!

COVID was now pretty prevalent, so things were changing at the hospital. Kari needed to go in to start her final round of treatment, and no visitors were allowed. Prior to this, Kari had gone to a gynecologist appointment for a check-up. A couple of lumps were found in her breast, and the radiologist said she needed a biopsy. She told Dr. Kiwan, and he was hoping it was nothing serious because, in all his years, he had never seen leukemia spread to breasts. It goes to the brain when it spreads. Guess whaaat? There is a first time for everything! Not only was the cancer in her breasts but throughout her body and spinal fluid! The PET scan was bright. I couldn't be there to hold her and had to listen to her sob on the phone, fearing she would die. Apparently, the treatment was keeping her blood counts normal while the cancer was thriving. Dr. Kiwan had no choice but to do extensive chemo since the cancer was everywhere. This was the worst time of our lives. Again, Kari lost her hair, but more than that, she lost some of her spirit. The depression was real, and to have to hear or see everything through a phone really sucked. This chemo really knocked her down, but God has something for her because again she went back into remission. We celebrated the day she could come home, but she didn't feel well. Turns out, because of all the pain meds, she became constipated and had not had a bowel movement in several days, and the hospital still released her. She came home Friday, and by Sunday night, I had her at the ER in severe pain and vomiting. She went back to the hospital, and this time was the closest we came to losing her.

Kari had an impacted colon, and because of her low immunity from chemo, we were terrified of sepsis. At least the hospital allowed one visitor per day now. But that only lasted a couple of weeks, then back to none. These were the darkest days. She was bedridden, losing weight, could barely talk, and she crashed once and was rushed to ICU. After a couple of weeks, things turned around. She was very weak and had to learn to walk again. She still wasn't eating much, but her voice was stronger, and she really wanted to come home. She fought hard, and God had saved her again!

Which brings us to today. Kari is doing great for what she has been through. She has even started back at her MMA gym for light workouts. Her hair is slowly coming back, but the last chemo really affected her scalp. She is in line to enter CAR-T cell therapy, but again, she is in remission. So, she will have PET scans every six weeks so that the cancer can be caught early. It seems weird to "hope" for cancer so that she can get treatment. I know this is a hard time for her, and everything seems in limbo, but I know she can beat this and have a good life.

Written by family member.