D-Day

Chances are the day of diagnosis is the worst day of your life so far. You always will remember exactly where you were, what you were doing, who you were with when you first heard those words:

The words ring in your head, ominous, forboding. Cancer. It is not possible! Not my son! This is not my life! There must be some mistake! It can't be! He looks fine!

Parents actually show signs of Post Tramatic Stress Syndrome, as documented in an article: Kazak, Anne E., et. al., "Posttraumatic Stress, Family Functioning, and Social Support in Survivors of Childhood Leukemia and the Mothers and Fathers," Journal of Consulting and Clinical Psychology, V. 65, #1, Feb.1997, pp. 120-129.

Anyway, here's my story.

April 17, 1997. 10:45 AM

I am at work, an ordinary day. Busy, laughing, dealing with problems as they come up, absorbed in what I am doing. The phone rings, "Hello?" "Can I speak to Patty?" "Speaking" "This is Anne at the University Medical Group Practice. I hate to tell you over the phone, but we think your son has leukemia. . ."

I need back up just a bit, to the day before. I had taken my son, James, to the doctor, or actually to a nurse practioner. James had been a little tired for several weeks, and he also spoke of muscle pains, in varying places, like shoulders, back, legs. This in itself was not unusual for him because he was in weight training. But he just didn't have his usual energy: he could not do a 25 mile bike ride anymore without getting tired. It bothered us; he was kind of acting like an old man, too tired to run up the stairs two at a time. That particular day there was an activity at high school that he wanted to get out of, and going to the doctor was a reasonable alternative.

James had always been healthy, there is no cancer in either my or my husbands' families, and our own parents are over 80. He was a junior in high school and we were turning our thoughts to colleges and dealing with him leaving home to go to college. I only took him to the doctor to set my mind at ease. After we left, I completely forgot about the visit.

The blood samples were sent off to the University Health Sciences Center and the diagnosis came back: leukemia. As Anne told me over the phone, she was in tears herself, apologizing for not telling me in person. She wanted James at the hospital ASAP. She had already booked a room for him.

Shock set in and survival instincts took over. I knew I couldn't drive safely, so a wonderful friend at work drove me the 23 miles home. There, luckily, were my son and husband, by chance home from school and work early. Back into the car for the 55 mile drive to Children's Hospital, not knowing even exactly where it was.

We were checked into Childrens Hospital in Denver within 27 hours of visiting the nurse practioner. I had an awful time opening the door that said 'Oncology' and escorting my son through it. The oncodocs re-ran the tests, and 2 hours later, we know, yes, it is leukemia.

Shock.

What can you do? You deal with it, somehow. You grieve. You find out what you have to know and have to do to help him.

Anyway, you don't have much time to think because you are shoved onto a fast train that you never wanted to take in the first place. Within 2 hours of confirmed diagnosis you have been told the following:

• At 7:30 the next morning, your son will have surgery to check his bone marrow for cancer cells, have a spinal to check the spinal fluid for cancer cells, begin intraethical chemotherapy, and have a mediport installed.
• You have to decide which type of mediport to have installed (what is a mediport, anyway, and why does he have to have it . . . ?).
• Your son will have to be home-schooled for the rest of the school year.
• Your son may become sterile.
• He will have to have chemotherapy for 3 years, beginning tomorrow.
• You have to decide whether to enter an investigative study or to do the standard protocol within 72 hours from this moment.

You find yourself pulling up a part of yourself that you never knew existed.You find yourself trying to protect family members and close friends from this terrible news, and comforting them when you do tell them. You find you are able to handle it. You pull out all your survival instincts, doing whatever it takes to protect your family.

You find yourself grieving for your child, as if your child had passed on. But no, he is right next to you! So you hug him a lot and argue a bit with your husband as to who gets to stay on that horrible uncomfortable couch in the hospital room each night with your son. You eat the horrible hospital food. You learn how to grab the emetic basin in a hurry. You find it hard to leave the hospital and go to your comfy home because your son is not there. You will never again take having your child near you for granted. This is a very good thing. You start looking for more good things.

There is hope.