IN THEIR WORDS
Leukemia at 19
It was 1993, but at times it feels like yesterday. My husband and I and our boys, then 16 and 19 years-old, had just enjoyed a long October weekend traveling. I was thankful for the opportunity to be together and started to think about future trips, marriages, grandchildren. Incredibly, our boys were heading into the next phases of their lives and we were happy to be going along with them. It had been a good weekend.
Back at home we settled into our routines. We were a healthy, active family so when little over a week later, our 19-year-old son, Danny, came home from college with flu and cold symptoms, I didn’t think much about it. I played Mom the nurse. He was given some penicillin for his fever and other symptoms. There was a flu going around and Danny didn’t always eat properly. Plus, he worked too many hours at a local hospital as an occupational therapist aide and he certainly enjoyed college life – he was run down.
A couple of days went by and when he still didn’t feel well, I persuaded him to stay home for a few more days; but when the days became a week he panicked thinking he was missing too many classes. He accepted my rationalization that he would relapse if he went back too soon and stayed in bed for a couple more days. November 1 was my birthday and the day Danny felt well enough to go back to school. As Danny would always do, he left a note:
Thanks for taking care of me.
The next day Danny called to say he developed a rash all over his body. We learned it could be a reaction to the medication and were told to watch it for a few days. The rash subsided and he was able go to a Billy Joel Concert on Saturday night, November 6.
My husband saw Danny the following Monday and reported that his eyes looked bad. On Tuesday, one of the nurses at the hospital where he worked told Danny that based on how his cheeks, eyes and glands looked he should get checked because he might have mononucleosis.
Sure enough, my typically very healthy Danny called to say he was coming home for the second time in two weeks because he didn’t feel well. I knew he must be feeling really poor. Worried, I waited and watched for him. I spotted him as he walked up the path to the house and was on the phone with the doctor before he opened the door. “You have to see him. I know its 4:45p.m., but this kid looks like hell!”
Driving to the doctor’s office, I mentally recapped the last two weeks in my mind knowing I would have to relay the information to the doctor. We thought Danny “just had the flu.” But now I remembered seeing his hand rest beside him… it was so pale, had such a pallor to it, that I remarked to myself that his hand looked like a dead person’s.
The on-call doctor checked Danny over and said his face was swollen, as well as his eyes and his glands but he did not have a temperature. An allergy specialist, this doctor was fascinated.
He told us, “I’ve never seen anything like this.” Not the words you want to hear from your doctor! “The rash is symmetrical. It could be an allergy,” he continued. I asked if it could be mononucleosis. “We’ll do blood work in the morning to see.” he answered.
Bright and early the next day, we had his blood drawn. His primary care doctor called late in the afternoon and wanted to see us in his office…soon. He did not like the results of the tests and wanted more blood work done at the hospital and a chest x-ray. He instructed, “Please have the x-ray technician call me with the ‘wet’ results”. He promised he would call later in the evening with results.
We returned home from the hospital after 6:00 p.m. and waited for the phone call. The call came and I tried to listen attentively, but my emotions got in the way. “Immature white blood cells… may need a lumbar puncture…spinal fluids…”What the hell does all this mean?” I asked myself.
As I was talking with the doctor, I jotted down notes. “I want him in at Children’s for a spinal tap,” the doctor stated so matter-of-factly. “I want Danny to see the specialist in there.”
“Does he have to go tomorrow?” I asked. “My husband is out of town on a business trip, and I don’t know where the hospital is in Boston.”
“He has to go tomorrow.” he sensitively urged.
I went to Danny, who was sitting in the family room in “his chair.” He looked so tired. He had been listening to my conversation with the doctor. I tried to explain as best I could what the doctor told me. I forgot I was dealing with a kid who had taken extensive courses in anatomy and physiology for the past two years. He filled in all the blanks for me! As I was talking, he turned ashen and ran for the bathroom and vomited. He came out, flopped in the chair and said, “I have cancer. I know I do,” as if he had just put all the puzzle pieces together. Tears filled his eyes and fear entered his body.
We were sent to an “adult hospital” because in 1993 they thought Danny was too old for a children’s hospital. We arrived and soon the tests began. At first they duplicated the ones done by Danny’s pediatrician. Then we began to hear words unfamiliar to us. We watched the clock and tried to read the faces of the doctors and nurses, hoping each time they came to “collect” us they would instead just answer “What is wrong with Danny?”
Another test was ordered; Danny needed a bone marrow aspiration. While waiting, I followed a receptionist to the kitchenette for a drink. She asked if Danny was my husband and I told her he is my son. She became emotional and hugged me and said in a sympathetic voice, “Oh, Honey!” I should have taken the hint…
Danny and I are alone when we finally heard the diagnosis.
I was in a controlled state of confusion. Three doctors had brought us into the “comfortable room” and their eyes were trying not to focus on us. One of them broke the suspense and spoke the words-cancer, leukemia. I held my composure, for Danny’s sake. I asked questions and answered questions. Staying strong for Danny, I took a deep breath, tapped his thigh and said, “Well, let’s get started with what we have to do. I want grandchildren from this kid.” One of the doctors gave a woeful sigh and said, “That may not be possible. The disease may have spread too far already.”
What did I just hear!? The doctor’s voice continued. “…we have a room being prepared for Danny now. It should be ready by the time you get upstairs.”
My husband was on a twelve hour flight on his way back from his business trip. We needed him and yet I dreaded sharing the news.
Fatigued, confused and dumbfounded, Danny and I let the system take over. We waited for people to move us around and tell us what to do. We were in a state of shock.
It was well after 8:00 pm and my 19-year-old son was lying in a hospital bed. A bag of dark red blood is flowing through a thin tube and into his arm. He looks peaceful but pale. Glad that he is finally resting after the grueling day of tests, I speak softly as I put my lips close to his ear, “I will dance with you at your wedding.” As I am trying to process all that has happened, these few words came to my mind and roll easily off my lips.
As I watch him rest, I think to myself, he has Leukemia!? I try to remember the doctors’ quickly spoken words. “Leukemia is a cancer of the blood.”
My mind began doing detective work. Who in our families had this disease? I think I want to blame someone…but I can’t.
I tried to judge when I thought my husband’s flight would arrive. Dan Sr. would need time to collect his luggage and get to his car. When should I call? I needed to have him come straight to the hospital but I did not want to break the news over the phone. Finally, I dialed the number and heard the familiar
“Hi, how was your trip?”
“Good, but I’m tired.”
“You should be. You’ve just flown for 12 hours. Where are you now?”
“Just coming out of the Sumner Tunnel.”
“Well Danny and I are still at the hospital. Don’t go home. Just come to the hospital.”
“Is something wrong?”
“They’ve done lots of tests.”
From that point on we talked about the directions to the hospital until he reached the parking garage.
The look on Dan’s face when he glanced at his son lying in a hospital bed will never leave my memory. I told my husband as quickly and as gently as I could. “Danny has Leukemia.”
15-40 Connection notes: Danny battled his cancer but in 1994, shortly before his 21st birthday, he died. As his family was learning to live with this loss, his dad, Dan, was diagnosed with esophageal cancer and died in 1997.