In the weeks leading up to the Pink Arrow game on September 22, 2023, we will be sharing stories from Pink Arrow Pride. Today’s story is about Leo Loeks, the son of Bill and Megan Nyson Loeks and grandson of Todd and Kim Nyson.
Written by Bill Loeks.
In the spring of 2016, our oldest son, Leo, started to limp on his left leg, so we scheduled an appointment with his pediatrician to get him checked out. The doctor gave a variety of mostly benign possibilities, took X-rays, and said she would run some blood work to check for other less common things, but didn’t give any specifics.
The next day, we received a phone call telling us we needed to come to the Helen DeVos Children’s Hospital (HDCH) that day and to pack a bag for a few days, potentially, but not really much info why beyond it, being related to his low white blood cell counts. The next few days were a whirlwind of testing, procedures, and meetings with doctors who broke the news that he was diagnosed with acute lymphoblastic Leukemia (ALL) on June 2, 2016.
His chemotherapy treatment would begin that day and last roughly the next three years. The first few months were the hardest: surgery to get an access port implanted, spinal taps/lumbar punctures for chemo and testing, steroids, days of nausea and sickness, an infection that caused a fever lasting over a week, and fought against various antibiotics, blood and platelet transfusions and so many different feelings.
We watched him go from being a seemingly normal and healthy 4-year-old to losing weight, losing his hair, swelling up due to a prolonged period of steroids, loss of mobility, and pain, to the point he would have to be carried up the stairs at home to go to bed. Despite the struggles and uncertainties, we had immense support from family, friends, and the hospital staff.
Finally, in August of 2019, he completed his 3+ year treatment plan and moved into just having to be monitored for bloodwork. It started as monthly bloodwork and slowly was phased down until September of 2022, when we moved to just an annual test.
Fast forward to the end of May of this year, Leo started exhibiting some symptoms he had shown when he was 4. He complained of some leg pains and started to limp sometimes. This was concerning based on our past experiences, but we didn’t think this could happen again.
We brought him to a local urgent-care office, and they checked him out and did some X-rays but not bloodwork. We were unsatisfied and wanted to get bloodwork done, so we contacted the HDCH and asked if they could request lab work at our local hospital since we live nearly seven hours away from Grand Rapids now. They agreed and sent in for him to get some updated bloodwork.
It was especially challenging because his dad, Bill, was currently deployed to Kuwait, and his mom, Meg, was home managing the household with Leo and his four siblings. After Leo was able to get in and had the bloodwork done, the next day (again), we received a phone call that some more testing needed to be done. Initially, he went to a local hospital, and they worked with the HDCH to do additional testing and monitoring.
Still, it quickly became evident that Leo needed to return to HDCH. It looked like his Leukemia had relapsed. On July 4, 2023, he checked back into the hospital in Grand Rapids. Coordination was made through the Red Cross and his unit to initiate getting Bill back home to be with Leo and the family to support Leo through his second battle with Leukemia. On July 7, Bill could make it back to Grand Rapids and be there for Leo and the family.
Although we had a much better idea of what to expect and what the process might look like this time, we knew it would not be easy, and there would be changes in how he was treated, timelines, medications, and different risks. He started with many of the same things as the first time: surgery to get an access port implanted, spinal taps/lumbar punctures for chemo and testing, steroids, days of sickness, blood and platelet transfusions, etc.
This time is also very different, though. He has met with a cardiologist for additional monitoring of his heart. He is undergoing genetic testing to look for genetic disorders or syndromes that may predispose him to cancer or explain why he has Leukemia again. The doctors also do not believe that he has relapsed but that this might be a separate case, which would be more rare and unusual to have a second, possibly unrelated, case of Leukemia. Leo is older now and has much more awareness of what is going on, but there are still a lot of questions of “why?”
We are thankful that this time around, once again, we have continued to have an amazing support team from family, friends, and everyone at Helen DeVos Children’s Hospital.