By Alyce Collins
THIS ACTIVE woman was diagnosed with LEUKAEMIA and relapsed after six months of chemotherapy, making BONE MARROW TRANSPLANT her only option, but she was running out of time and it was arranged for her brother to be her donor over FACETIME.
Kyla Ubbelohde (27) from Iowa, USA, had started to feel unwell in August 2017, but when she was leaving for a three-day trip with her friends she decided to stop by the urgent care clinic to get some medication to keep her symptoms at bay.
The phlebotomist at the urgent care clinic took readings of Kyla’s blood and was perplexed by the strange numbers which were coming up. Despite repeating the test, the numbers still came back showing the readings of a sick person. Kyla was sent to the hospital, and when nurses took her blood tests there, she was admitted immediately.
Kyla was diagnosed with an aggressive form of acute myeloid leukaemia, much to her surprise as she was a healthy 26-year-old woman who worked out regularly and didn’t smoke. She didn’t understand how it could happen to her. Due to the aggressive nature of Kyla’s cancer, she started chemotherapy straight away and completed five rounds over five months.
Kyla tried to remain optimistic throughout treatment, and she was told that her cancer was responding well to chemotherapy which encouraged her to keep going. Once the six months were over, nurses gave Kyla the green light to resume her normal life.
A routine appointment six weeks after finishing chemotherapy showed odd readings and Kyla was later informed that she had unfortunately relapsed, which was a devastating blow.
The mutation was different the second time and it didn’t respond to the chemotherapy. Kyla’s only option was a bone marrow transplant and her brother, Kyle (22), was the closest match. There wasn’t time to identify a closer match and as Kyle wasn’t local, organising for him to be the donor was arranged over FaceTime and he flew in to donate. The transplant was on May 3, 2018 but Kyla couldn’t see people for seven months as she was susceptible to infections.
“At the end of August, I started to feel unwell but had planned a three-day trip,” said Kyla.
“I didn’t want to go and feel unwell so I stopped at the local urgent care, thinking it was just a minor sinus infection or flu. The phlebotomist took some blood and came back and said the machine was giving her funny numbers because I was the first person of the day.
“The numbers didn’t change after a second blood draw, so they sent me to the hospital.
I didn’t really feel anything; I didn’t understand the severity of the situation. I was a healthy, young, fit, 26-year-old who didn’t smoke and drank casually – people like me didn’t get cancer.
“I received the official diagnosis of acute myeloid leukaemia when my mum arrived at the hospital as the hospital staff didn’t want me to receive the diagnosis alone, which I’m thankful for.
“I received nine rounds of chemotherapy and a total of 11 types of chemotherapy. The cancer responded well to treatment and the doctors were optimistic. It seemed like every time we got an update it was always positive.
“After six months, I was given the all clear to resume normal life. I felt able and powerful, so I started working out again and looking for a new job.
“I found out on March 7, 2018 that I’d relapsed after some routine blood work looked odd. It wasn’t abnormal for numbers to dip and recover within the first six months after treatment, but the doctor wanted to be sure it wasn’t the leukaemia coming back so he ordered more tests and it showed it had come back.
“I was devastated by the news. The mutation was different to the first one, so the previous chemotherapy didn’t respond. The doctors started a different regiment which was more potent, but that also failed.
“As I’d had so much chemotherapy, and trialling too many chemotherapies could cause more harm than good, I ran out of options.
“My only chance at living was a bone marrow transplant, and I had many perfect matches in the registry, but because of all the additional testing and preparation a donor goes through, it would have taken too long, and I didn’t have time.
“My siblings were tested, and they weren’t perfect matches, but the doctors said the best option would be my brother who was a half match. Thankfully, it gave me an option to live, but I was worried because it wasn’t a perfect match and I didn’t want the process of donation to be painful for my brother. I also didn’t want him to feel guilty if the transplant failed.”
Kyle went through a week of injections to prepare his body to donate before his stem cells were harvested and then donated to Kyla through an IV drip the following day. As she sat and watched the transplant take place through her PICC line, it was a surreal feeling for Kyla who visibly saw her second chance taking place.
In June 2019, Kyla was able to celebrate one year in remission by hiking and camping, something she loved to do before her diagnosis but couldn’t do while she was being treated.
“One of the major things about being a young adult with cancer is the isolation. I could only have visitors when my counts were high enough and I was so susceptible to infections that even something small could kill me. I spent seven months in isolation,” said Kyla.
“For the first three months, it was total confinement and the only time I got out of the house was to go to appointments. The next four were still very restricted but I could see a few people if they weren’t sick or been around people who were sick.
“I was so weak and unable to do much more than eat and sleep before. It’s a long recovery and it was slow at first, but soon enough the weeks of tiny progress turned into months of bigger progresses.
“During recovery I couldn’t do much, I had no energy and sometimes I wished that the leukaemia had killed me. When I talked to a therapist, I found that’s very common ideology and everything I was feeling was normal.
“It’s very damaging for young adults to have cancer, no matter the diagnosis or prognosis. My life since transplant has been a constant struggle but I’m trying to make the best of it. I have a different outlook on life in terms of what’s important.
“Before cancer, I had my whole life planned out in terms of holidays, academic goals, personal goals and financial goals. Life can really change in the blink of an eye. Isolation showed me even if you’re alive it doesn’t mean you’re living. Now, I try to do as much as possible while I can. I really didn’t think I’d make it this far.
“Live your life boldly and free of taking other people’s criticism to heart, live life for yourself not others.”
To see more, visit www.instagram.com/you_below_de