It is my privilege to tell you Matthew’s story, our family’s story, from a mother’s perspective. Each member of our family would tell it a bit differently as each of us has been affected differently. We all agree, however, that when cancer strikes, no family member is spared its impact.
It was August 2017, and a great summer was about to end. Our daughter, Kaitlyn, had worked a summer job at a resort in northern Minnesota and was preparing to depart for her sophomore year of college. Our then 17-year-old son, Matthew, was about to begin his senior year of high school. He was employed part-time on a local farm that summer and had learned the meaning of an honest day’s work. My husband, Mark, and I were proud of the work ethic he had developed, and his efforts were paying off in the form of a muscular physique.
As August was drawing to a close, I felt excited about where we were in the life of our family. Our children were almost grown, our daughter was doing well in college and our son had only one more year of high school. He was becoming independent and in no time would also be leaving the nest. Mark and I have always been travelers and were dedicated to providing our children with fun, memorable, and educational experiences to as many destinations as possible. By Summer 2017, I had begun to dream about planning trips to places still on our bucket list.
Ten days before school would begin, Matthew told me he was experiencing morning headaches. I thought they might be from working under the hot sun and becoming dehydrated, so I told him to take ibuprofen and be sure to drink plenty of water. It seemed to temporarily do the trick but each morning the headache returned, so I made an appointment with his doctor. During his exam, the doctor noticed a rash on the top of Matthew’s feet. Typical of a teenage guy, Matthew hadn’t noticed the rash until he was questioned about it. The doctor didn’t seem overly concerned but asked us to monitor the headaches and to check back in a week if they hadn’t subsided.
That evening I mentioned the foot rash to my husband who thought it was a minor irritation from the new work boots we bought Matthew for his summer job. Still, I felt unsettled about the rash, so I lodged a note to self to follow up with Matthew in a couple of days to see if it had improved. I did follow up and sure enough it had not improved, but it also hadn’t gotten worse. Regardless, I was unable to sleep that night, the rash gnawed at me. It didn’t look scary; it was just strange and unlike anything I had seen before. I did what no one should do in this situation. I got out of bed and started researching it on the internet. After I was sufficiently spun up over all the horrible things it might be, I turned off the computer and decided to stop worrying myself over what was probably nothing.
BUT, I also decided if anything was amiss, the most likely place it would be detected would be in blood work. When Matthew went to school the following morning, I perched myself at the doctor’s office at opening of business to request a script for blood work. Inwardly I felt foolish and realized the nurse might think I was overreacting, but I believe God placed a deep concern on my heart, so there was nothing stopping me. I then picked up Matthew, who I could tell also thought I was overreacting, and off to the lab we went. Following the blood draw, I took him back to school and headed home, not too worried but glad we were attempting to get to the bottom of what this mystery rash might be. That is, until 4:10 p.m.
The phone rang and I saw on the call log it was the doctor’s office. I thought it was nice that they were kind enough to let me know everything in Matthew’s blood work was fine. But that wasn’t at all what the doctor said. After confirming he had called the right number, the doctor said, “I believe your boy has leukemia. I have already called Children’s Hospital in Pittsburgh. You need to take him there right now; the doctor is waiting for you. You need to pack a bag.”
There are no words to describe what it was like to hear these things being said about my son. The doctor’s words are seared into my brain. Details of the rest of that day are fuzzy but I do recall looking at the clock and knowing my husband was on his way home from work. I called him while he was driving and told him what I had just learned. I think we hung on the phone together in muffled cries until he got home.
We gathered up Matthew and began the agonizing drive to Children’s Hospital. We didn’t tell him about the doctor’s suspicion because deep in our hearts we hoped this diagnosis couldn’t possibly be correct. He was a strong young man and all he had was a minor headache and a silly little rash. How could this be cancer? We knew what leukemia was but other than that, we were about to enter a foreign world that would forever change our family. Until Matthew was diagnosed on September 7, 2017, cancer was something we had only heard about happening to other families. Sure, intellectually we knew it “could” happen to us, but like many of you, we were living life like it wouldn’t. And we certainly never considered it could happen to the youngest member of our family.
After eight hours in the ER waiting for blood work to confirm the diagnosis (Acute Lymphoblastic Leukemia), Matthew was transferred to the ICU where we would spend the next several days. His white blood cell count was so high that the doctors were concerned Matthew could have a stroke. They needed to intervene quickly to reduce the number of white blood cells through a procedure called leukapheresis in which Matthew’s blood passed through a machine which took out the white blood cells and returned all the other blood cells and plasma back into his bloodstream. This procedure was done three times. Doctor after doctor was baffled that Matthew appeared so healthy yet had almost set a hospital record for white blood cell count. We later learned the rash on his feet was called petechiae and is a tell-tale sign of leukemia.
We were assured it was nothing we had done or nothing in Matthew’s lifestyle that had caused his cancer. Exactly when his leukemia started couldn’t be pinpointed, but doctors speculated it hadn’t been long. I immediately began to think of the things he had done in recent weeks, did he have leukemia then? Only weeks earlier he had gone with his Dad and a group of men from our church on a wilderness camping/canoe trip in the boundary waters of Minnesota. While there they had no contact with the outside world, did he have leukemia then? His senior pictures were taken, did he have leukemia then? Probably so. One thing I knew for sure, even in the early days. It was by the grace of God that his leukemia was discovered and we got him to the hospital in time for treatment.
As the days went by, doctors began to lay out Matthew’s treatment plan for us. There was so much information and the words cut into my flesh like a knife. Despite their kindnesses, could they really comprehend what it was like for a parent to hear these things being said about her son? Unlike many other cancer treatments, treatment for childhood leukemia is what I call the “long haul”. Matthew’s treatment plan was 3 to 3-1/2 years, it was aggressive and began immediately.
After 30 days of treatment, a bone marrow biopsy was done to determine if Matthew was in remission. Miraculously, he WAS in remission where he has remained since October 6, 2017. His doctor later admitted he did not expect to see remission after just 30 days given how high Matthew’s white blood cell count was at diagnosis. Remission with leukemia means there are no leukemia cells detected in the blood, but it does not mean there aren’t cancer cells still present waiting to “wake up”. This is why treatment is so lengthy.
For ten months treatment continued in phases, sometimes very difficult and each lasting roughly two months. Many weeks we drove to the hospital every day. The rigorous schedule forced Matthew to complete his senior year of high school through homebound instruction which enabled him to graduate on time. His doctors also worked with us to adjust Matthew’s treatment schedule so he could attend his senior prom and commencement.
There were moments when I was sure I couldn’t endure it. Treatment seemed impossibly long and at times more than I could stand to see Matthew go through. I struggled every day with the overwhelming desire to take his place and began to experience something I knew nothing of to this point in my life. Sleeplessness. There were nights in Matthew’s hospital room when fear made rest impossible. I would lay awake in the darkness and only the whirl of the helicopter landing on the hospital rooftop broke the silence. It was then that my own anxious thoughts would turn to another family whose world was about to be turned upside down. Those nights were lonely, but I was never alone for it was then that God was most real to me. I would pray, asking Him to give me the strength to get through the night. In His faithfulness, dawn would break with the promise of a new day. My prayer was answered.
In essence, we had traded the life we knew for a whole new life. The hospital had become our second home and with it, the people who cared for Matthew our extended family. They are special people, those who care for children with cancer, and I feel an attachment to many of them. But just like all of our homes, this home was not perfect. I quickly learned that despite the unparalleled care available at Children’s, we, too, had to be on our game every day, ready to be Matthew’s advocate. Thankfully, advocacy is encouraged at Children’s Hospital. I learned much about leukemia and its treatment as well as how to decipher the blood work. Most importantly, I knew when something about Matthew’s treatment seemed off. During the months interspersed with hospital stays, Children’s Hospital became both my prison and my refuge. It was the last place yet the only place I wanted to be because I knew they were helping my son.
The emotion and exhaustion that accompany the catastrophic illness of a child can be overwhelming. I tried to keep up with life outside the hospital while coping with the heartbreak I felt inside. And while I thought I knew best the people with whom I live and love, I discovered through Matthew’s illness there was more to learn. We each coped with our new circumstance differently which I recognized could either pull us together or rip us apart. It was not easy in a long-term, acutely stressful situation, but we accepted our differences and allowed each other the freedom to cope in whatever way worked best.
Even though our world had stopped, life outside the hospital went on. We still had to maintain our income, pay bills, and be there for Kaitlyn. We quickly assumed our new roles which required tremendous sacrifice. Mark continued to work which meant he often couldn’t be with us for the initial ten grueling months of intensive treatment. I was blessed to be able to take Matthew to all of his treatments but struggled with exhaustion and the heartbreak of watching what he went through. Kaitlyn gave up many opportunities as a carefree college student to spend time with us at the hospital when Matthew was inpatient. Nonetheless, we considered ourselves fortunate. We regularly saw families who struggled to care for younger children still at home, keep jobs amid the intense treatment schedule, and pay bills. The added financial strain cancer brings can threaten to be the undoing of a family.
We feel tremendous gratitude for the tangible and practical ways we have been shown love and support throughout Matthew’s journey. Mark and I have always strived to be givers. Yet until now, we never fully understood what it was like for the recipient, or that one day the recipient would be us. It is not easy to be the recipient. It’s humbling, and it means being at a place in life where you never want to be. We have been blessed by the people of organizations like Lending Hearts who have experienced tragedy, turned it into hope and used it to help others. I believe this is what we are called to do – use the trials of life and the things they teach us to bring comfort to others. This is the very thing Lending Hearts does.
Matthew’s life took a dramatic turn in September 2017 just as he started his senior year of high school. But I am thrilled to say he completed treatment in December 2020 and remains in remission. He is set to graduate from college in May 2022 with a degree in Biology Health and has applied to graduate school to continue his education in a Physician’s Assistant Program. He is currently interviewing at several universities. My prayer for him is that God will open the door He wants Matthew to walk through which no doubt has been influenced by his journey through cancer.
As a family we have been through a lot in 4-1/2 years, more than I could have ever imagined, but we have been sustained by the support of family, friends, our church, our community, the care of wonderful doctors – and a whole lot of prayer. We participated in Lending Hearts activities to the extent we could while Matthew was in treatment, but it wasn’t until later that I had the privilege of participating in many of the wonderful programs they offer. You see, none of us emerge from cancer unscathed. The completion of treatment in some sense is when healing begins, especially for caregivers. After spending years in fight mode, focusing solely on Matthew’s treatment and whether it was effectively irradicating his cancer, how does one suddenly cope with treatment ending? I found myself dealing with the very real fear of Matthew’s cancer returning and had to learn to give it its proper place in my life. As I face my own journey in this regard and through Lending Hearts, I have benefitted from time spent with others who have gone through cancer.
There is one story about our journey I have never told in its entirety. Until now I thought it was one of those experiences in life that was reserved just for me. But now I feel led that it is time to share it.
It was August 2018, Matthew had completed more than 11 months of treatment and had recently begun the final phase called Maintenance which, at the time, was designed to continue for an additional 2-1/2 years. Things seemed to be going well; we were assured this was going to be the ‘easy’ part and life would return to some sense of normalcy. Yet as Matthew was just two days from moving into the dorm to begin his freshman year of college, he began to not feel well.
I called the hospital but based on my description of Matthew’s symptoms, I was advised to monitor him at home. The symptoms escalated so I insisted we go for bloodwork. While we were at a local lab for a blood draw, I could see Matthew deteriorating before my very eyes. We had to get to the hospital immediately because something was terribly wrong. In hindsight this wasn’t the brightest idea I’ve ever had, but I made a quick stop at home to grab the bags I always kept packed for Matthew and me. As we headed down the road, I called the hospital to let them know we were on our way.
It was the longest drive of my life. Traffic was terrible, we were navigating construction and Matthew was rapidly deteriorating. I looked at him and could see his shirt fluttering so I knew his heart was racing. Mark met us at the hospital and together we began a 10-hour siege in the ER.
The news kept getting worse. An ER physician finally delivered the test results. Matthew’s liver was failing and there was no medical intervention that could be done. All we could do was wait to see if his liver would repair itself, but I could hear in the doctor’s voice it was not expected. Mark and I stepped out of the room to attempt to process this news. We thought we were dealing with cancer; how could this current crisis be caused by his liver? Our eyes met, and I could see in Mark’s that we both understood the gravity of what we were facing. I held Mark’s shoulders in my hands and said out loud what I knew we were both thinking. I said, “Mark, God is either going to do a miracle or He is taking Matthew to Heaven tonight.” Those were the only two options.
I regained my composure enough to go back into Matthew’s room and involuntarily dropped to my knees on the floor beside his bed and began to pray. I begged God to spare Matthew’s life that night. When I stood something occurred that I will NEVER forget. A sense of peace washed over me that was unexplainable. Not the kind of peace you have when everything is OK. Everything was definitely NOT OK, but in that moment, I knew in my heart I was powerless to stop what was happening. I didn’t know the outcome but as I watched Matthew literally fight for his life, I knew in a profound way that God was in control. And it gave me peace.
Matthew was transferred to the ICU where he could be constantly monitored. Teams of doctors streamed in and out trying to discover what was causing his liver to fail. They explained to us that at some point Matthew’s neurological functions might begin to fail, so every hour throughout the night they administered a simple test to measure his neurological capability. He passed every one of those tests and by morning when his oncologist arrived, Matthew was showing tiny glimpses of improvement.
He continued to bounce back and within just a couple of days was released from the hospital. We sent him off to college having missed only the first day of classes! Leaving him on that campus after what we had just been through took every ounce of courage I could muster. It was one of many times I had to set aside my instincts as his mom and trust that his doctor knew better than I what was best for Matthew.
Meanwhile doctors continued to delve into what caused this violent reaction. They first thought a virus had attacked his liver, but a similar yet less extreme episode occurred causing us to spend Christmas 2018 in the hospital. By then they knew it was something else. It took months of testing and experimentation with his chemo, but it was finally discovered that one of the chemotherapy drugs was toxic to his liver. There is even an acronym for it – DILI -- Drug Induced Liver Injury. That August night when we arrived at the ER, the level of chemo in his system was seven times what it should have been. At this point it wasn’t the disease that was hurting him, it was the treatment! To simplify, by nearly losing Matthew, it was discovered that due to his genetic makeup, the amount of this chemo needed to effectively treat his leukemia is much less than that of most patients. The proper adjustments were immediately made, and his liver made a complete recovery. That is just one of the hurdles we had to overcome.
The doctors told us when Matthew was first diagnosed that treatment would be a marathon. I don’t think we fully understood what that meant until we entered his third year of treatment and still had a long way to go. There is no luxury of taking a break, ignoring, or forgetting about cancer or its treatment. The third year was a tremendous struggle for Matthew and a heartache for me. But he is a quiet fighter. Cancer has taken many things from him but like the champion he is, he is living life!
Getting back to my story about that August night in the ER. Undoubtedly Mark and I, along with everyone in that hospital room, witnessed a miracle. Against all odds and with no medical intervention, Matthew recovered. Friends, what we went through is something we will all face. It might not be cancer or in the ER of a hospital, but when it comes, we won’t be able to stop it. When it comes, what will your reaction be? Will it be one of fear, or will you trust in the One who numbered your days before you lived even one of them?
If you are unsure or don’t know the answer to that question, I challenge you – please don’t wait. Please get it settled today.
Love, Deborah.
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