Kyle’s story: Told in the words of his mother, Beth Anne Rekowski
TINA L. SCOTT
When you do the math, it seems like a long time ago. Four-year-old Kyle Rekowski passed away from cancer on December 7, 1992. It will be 29 years ago this December. But to his family, it seems like just yesterday. The wound is still a gaping hole in their hearts; the loss still as fresh and painful as ever. It never really gets much easier.
Where does a family go with all that grief? For the Rekowski family, turning their pain into hope for others who are also, or have also, battled cancer has become a means of coping and moving forward and remembering their little boy in a meaningful way.
This is the story of their little boy, the beautiful young face and inspiration for the Remember Kyle Memorial Scholarship.
Diagnosis and aggressive treatment
“Kyle was just four years old when he was diagnosed, with a very aggressive form of cancer, called leukemia Ph+ (Philadelphia Chromosome Positive).” said Beth Anne Rekowski. “This was a very rare, difficult to treat, aggressive form of leukemia. Kyle’s oncologist and transplant doctor both said that his only chance was to undergo a life-saving, bone marrow transplant.”
“However, if the chemotherapy treatments didn’t kill all the cancer cells within his entire body’s bone marrow, there would not be any transplant, and then Kyle would die,” she said.
The family and doctors wasted no time attacking the cancer. “The day after Kyle was diagnosed, his protocol of intense chemotherapy began,” Beth Anne said.
“I can’t explain the joy and relief I felt when Kyle eventually achieved remission after four incredibly difficult months of debilitating treatments!” she shared. “Throughout that time, I helplessly watched my little boy get horrible mouth, throat, and airway sores, while he became terribly weak and sick. Of course, he also lost his beautiful head of hair, as well as losing 15 of his 42 pounds of body weight. Chemo not only kills cancer cells, but it also kills so many healthy cells, too.”
“Yet, as hard as this was for Kyle to go through,” Beth Anne said, “it was the only chance we had to try to keep Kyle alive.”
“After Kyle went into remission, preparation for his [bone marrow] transplant immediately began,” Beth Anne said. “Little did I know how chemo would almost seem trivial compared to what came next.”
“Just a few days later, on October 13, Kyle started even more intense chemotherapy, as well as twice a day, full body radiation, every day. The first days so wore him out, but the following two days really brought reality to the surface, clueing me in on just how bad things could really get.”
“By the end of that first week of pre-transplant chemo and radiation, Kyle was literally like a rag doll,” she said. “I carried my little boy, as he lay across my arms, in a seemingly lifeless state.”
“By the end of that day, when we went back to Kyle’s hospital room, it was eye-opening and heart-wrenching seeing the visuals happening to my child.”
“Each day after, Kyle hurt more and more. As his tiny, little body was deteriorating, so was my heart – and the transplant itself didn’t even take place yet,” Beth Anne said.
“My fears consumed me, knowing all that could go wrong with the transplant, in addition to all that was already going wrong. Plus, the most awful awareness of the inability to help Kyle was just tearing my heart out.”
“Transplant day took place two weeks after Kyle finished his week of pre-transplant treatments,” Beth Anne said. “
“As each day passed, more things went wrong every single day. Kyle had already gotten to the point of hardly being able to talk, due to all the sores inside his mouth, down to his airway, and even further beyond,” she said. “As his numbers dropped daily, so did his immune system. The lower his numbers were, the higher the risks were for any and all life-threatening infections, organ failures, etc.”
“Kyle couldn’t even sleep anymore, despite being on the highest dose of morphine for pain,” Beth Anne said. “So our nights were all-nighters and truly unbelievable, witnessing my own, helpless child’s demise. Kyle’s skin lost all its color and took on a terrible, gray tone. There was no denying how his very unhealthy, outside look matched his very unhealthy, diminishing inside body.”
“One night, on post-transplant day 14, was the longest sleep-deprived night of all,” she said. “Kyle’s pain was nothing less than unbearable.”
“Then in the midst of it all, Kyle tried talking and asked me how we stay up in Heaven,” Beth Anne said. “Then he asked me if there’s a floor up in Heaven. He also asked me if there are lights in Heaven.”
“I didn’t give his questions too much thought at the time,” she said, “Because I was so tired, because we hadn’t had more than a couple of hours of sleep, per night, in almost a month. I couldn’t even imagine how tired and pained Kyle was, as I was just so tired. I truly had no idea what significance his questions had that night.”
“As that night went on, I continually called the nurse to come and listen to Kyle’s lungs,” Beth Anne said. “I kept telling her that his breathing wasn’t right and that I knew something terrible was happening with his lungs. Every single time, she said nothing had changed. Yet, I kept calling her in because I just knew his lungs were changing for the worst.”
“That next morning was November 11, when Kyle’s transplant doctor made his very early morning rounds. As he listened to Kyle’s heart and lungs, he had a look of pure horror on his face,” Beth Anne recalls. “My greatest fears did come true, because Kyle’s lungs were, in fact, failing.”
“His doctor immediately called for help, and the medical team quickly wheeled Kyle’s bed out of his isolation room straight into ICU. That was the first time that Kyle and I came out of his room, in about a month,” she said, “for transplant protocol precautionary measures, because he had no immune system anymore.”
“On the way to ICU, I couldn’t allow myself to comprehend what was going on,” Beth Anne said, “because what was happening was so terrifying.”
“As they wheeled my baby away, Kyle was trying to talk and told me he wanted me to hold him while he went to sleep.”
“He knew he was going to sleep, because sadly enough, he was all too familiar with the operating room,” she said, “because of the surgeries he had done to have his chemo port and central lines put in. However, this time was to have a ventilator tube put down his throat and into his lungs. He was also going to be put into an induced coma. The ventilator would end up doing the breathing for Kyle, because his lungs were no longer able to do so.”
“The pain in my heart was overwhelming, indescribable, and unbearable,” Beth Anne shared. “Naturally, I couldn’t go with Kyle and hold him, like we both wanted and needed, for what I knew could possibly have been the very last time, knowing the life-threatening danger he was in.”
“So, I waited,” she said, “for what seemed like days, for his transplant doctor to come talk to me after the procedure was done.”
“When he came out by me, he had tears in his eyes,” Beth Anne said, “My heart sank, but he quickly told me that Kyle was in grave danger, but the vent was breathing for him now.”
The nightmare continued
“This terrible event was just the beginning of the newest nightmare for us. Either every day, or every few days, the nightmare just kept getting worse and worse. Just when I thought it couldn’t get any worse, it did!” Beth Anne said.
“Within days of Kyle being put on respiratory life support, Kyle’s kidneys failed next. So he was put on dialysis,” she said. “Next, his numbers indicated that his liver was also failing.”
“Then my little Kyle had a heart attack, too,” Beth Anne said. “My comprehension was null. My four-year-old had a heart attack?”
“While all of this was happening, I don’t know if I was capable of being cognizant of anything happening, because I truly think it would’ve killed me. I felt like I was in shock, in the middle of the worst dream I ever had, lasting longer than ever. I just couldn’t go ‘there.’”
“The hardest visual, other than seeing my little boy on endless life support machines, that were literally keeping him alive,” she said, “was seeing nearly every part of Kyle’s skin, across his entire body, literally opening up and falling apart, because our skin is our largest organ. How could anything else possibly go wrong? I soon found out that it definitely could and did!”
“Kyle’s pancreas then shut down, and he needed insulin to replace what the pancreas no longer produced,” Beth Anne said.
“Next scare was that Kyle’s blood pressure bottomed out. The medical staff immediately suspected that he was bleeding internally. So they did an emergency surgical procedure, and inserted chest tubes, to help remove all the blood from Kyle’s chest cavity, around his lungs and heart.”
“As I was sitting next to Kyle, in both denial and disbelief of all that had been happening,” Beth Anne said, “a medical team suddenly rushed in again and said they thought he was having a stroke or a brain bleed. An urgent brain scan quickly indicated Kyle had had a stroke.”
“What? My child? A stroke, too?” She was now beyond comprehending the enormity of all that could go wrong, how much her son could endure, how many things could happen to one child in one lifetime, even as his condition continued to deteriorate.
A month in a coma in ICU
“Kyle and I had been in the hospital for nearly two months now,” Beth Anne said. “It was the worst roller coaster ride ever. I couldn’t have come close to imagining all that had gone wrong. With all of the fears I had prior to transplant, all that happened was far worse. Kyle’s transplant doctor continuously said how there was no medical explanation why Kyle was still alive, from the first day in a coma in ICU, until nearly a month later, when he was still holding on despite all that had happened to his fragile, tiny body.”
“Then, on December 7, after nearly a month in a coma in ICU, as the nurse was suctioning Kyle’s ventilator tubing, I saw what truly was my absolute worst fear become a reality,” she said. “There was blood in his tube.”
“The nurse looked at me, with obvious sadness and compassion,” Beth Anne said, “as her own humanness and feelings so obviously consumed her, confirming my observations and awareness of what was really happening to my little boy.”
“That blood was a sign that Kyle’s life could no longer be saved. There just aren’t sufficient words to describe the pain I immediately felt,” she said. “I could swear that someone just threw a butcher knife deep into my heart.”
“This was happening at almost midnight,” Beth Anne recalled. “Time didn’t matter, when I called my Mom and Dad, my brother, my sister, and my brother-in-law, as well as our dear friend of the family, Allison, who loved Kyle before he had cancer and ultimately became his primary transplant nurse before ICU happened.”
“With few words, I cried uncontrollably to all of them, telling them it was time to come to the hospital, because Kyle was dying, and they all came.”
“… It was time for him to rest …”
“With all of Kyle’s family surrounding him, the nurses put my little boy in my arms for the first time in a month,” Beth Anne remembered. “While doing so, they adjusted his ventilator tubing, because I would not make the decision to remove life support from my child.”
“His heart rate and blood pressure had been slowing down for the few hours prior, but was holding there during this time.”
“Then,” Beth Anne said, “I found myself saying the words that I could never plan to say and certainly couldn’t have said before those moments.”
“I told my Kyle how he’d been so very brave for so long, that he didn’t have to fight anymore, and that it was time for him to rest,” she said.
“I then told him that I love him with all my heart and will love him forever,” Beth Anne said. “Within seconds of my saying that, my precious Kyle’s heart stopped beating … while I swear mine did, too.”
Grief lasts forever
“That experience, that pain, and that child changed my life forever. Life has never been the same without him and it never will be,” Beth Anne said. “I have learned lessons that only such pain can teach.”
“I have learned that grief is hard, grief needs to be shared, and grief lasts forever,” she said. “There are no rules, no time limits. There is no right or wrong.”
“We don’t get over the loss of a loved one,” Beth Anne said. “We simply learn a new way to live life without them, no matter how hard it is.”
“For years, I died with Kyle,” she said. “Then my Mom told me that she not only lost her grandson, but she also watched me, her daughter, die with Kyle.”
“That hurt me that it hurt her so badly.”
“For so many years, I was so deep in my own pain that I couldn’t see outside of it, including my Mom’s,” Beth Anne said. “This was also after doing a study on Rick Warren’s ‘Purpose Driven Life.’”
“During that study, taught by our friend, I realized that Kyle had fulfilled his life purpose in just four short years,” she said. “That made me realize that I needed to figure out my life purpose, too.”
“So I consciously decided that I was ready to make some changes, in this lifelong grief journey, and put Kyle’s life and death to use,” Beth Anne said. “I did not want to let him die in vain.”
“Shortly after, another friend and I – she is also a cancer Mom – organized our first St. Baldrick’s Childhood Cancer event,” she said.
“Then, within a short time after that, I organized or helped with other local cancer fundraisers, as well as having started the Remembering Kyle Concerts and Remembering Kyle Memorial Scholarship in 2013, We are now into our eighth year of offering scholarships, having awarded nearly 30 scholarships since year one.”
“So, that is the intimate, most difficult, true story and inspiration for the Remembering Kyle Memorial Scholarships,” Beth Anne said.
“My hope is that your hearing the behind-the-scenes details has moved you, moved you in a way of being grateful for what you haven’t had to endure, and also move you in a way that makes you want to help our three 2021 scholarship recipients, as well as being empathetic to anyone who has suffered from similar circumstances or from such a horrific loss,” she added.
“My intention is to build awareness and to build compassion for one another,” Beth Anne said. “I truly believe that is why we go through the trials that we do.”
“Once we know the pain, we know the trials and the feelings that accompany them. We see from a totally different perspective what others are subjected to, and the fact is that none of us can overcome these challenges alone.”
“So don’t let someone walk the path alone either,” Beth Anne said. “Walk right along with them – right by their side. Survival increases greatly when burdens are not avoided … but shared.”
The Remembering Kyle Memorial Scholarship helps Merrill High School graduates who have experienced cancer in their family, either as a cancer survivor themselves or as the child or sibling of someone who has battled cancer. This is one way burdens are shared. Beth Anne finds a sense of purpose, in part, in remembering Kyle, while helping students and their families by helping raise scholarship funds to give them hope for their future, to pursue education for their passions and future careers. It’s all about sharing each other’s burdens, creating hope, and remembering Kyle.