The Longest Journey

Into the Unknown

Day two arrived, or was it day three? Hospitals are places where the normal rules of twenty-four hours cannot apply. The waiting hours are multiplied and the days can drift away without any feeling of accomplishment.

Each doctor arrived, handed over their business cards, and talked about what it might be. The first action was a visit to the ultrasound room for a sonogram and a perisomethingorother. The room was near the bottom of the hospital and it felt good to get out of the room and see that life was continuing without us. The strangeness of the ultrasound room was summed up in all of the posters on the wall: a collection of black and white images of babies floating amniotic fluid. This was a room set aside for the happiest moment of parenthood, not for looking into the belly of my son to find the best place to drain infected fluid from his belly.

The Tech came in and began the very familiar process of spreading the clear conducting agent on the head of the ultrasound sensor and then pushing it across my son’s belly. My wife and I stood looking at the monitor not really knowing what we were seeing and knowing better than to ask any questions like, “Does the liver look healthy?” We knew the main reason for this trip was to look at the liver and to gather fluid to test. I made the mistake of Googling the terms Liver Cancer as we waited in the hospital room after one of the doctors mentioned it as a possibility. The internet is a cruel place. Rates of survival for liver cancer are not high.

After twenty minutes, the Tech called in a doctor who introduced herself and proceeded to find the best location to lance my son’s swollen belly. She found the spot, marked it with an X like buried treasure, numbed the area with a couple stinging shots of pain-killer, and then took out the needle and catheter. (The needle sat inside the plastic catheter like the retractable part of ballpoint pen sits inside of the pen shell.) She lanced his side, withdrew the needle, connected a narrow tube to the catheter, collected several large syringes of a beer colored fluid and then began draining fluid into pressurized airtight liter bottles. Three and a half liters of fluid washed out of his stomach and into the glass bottles.

When the doctor was done, she sealed the puncture off with a bandaid and said the samples would be sent to the lab. I asked, “How long until we know anything?” Direct questions like this do not get direct answers, hours for some tests, days for some tests, no way to really tell. We made our way back up to the room and had our first positive surprise of this journey, one of Dylan’s best friends had driven to Seattle from Spokane (270 miles). Dylan was feeling much better after losing the extra liters of fluid and having his friend in the room lifted everyone’s spirits.

The rest of the day was spent teasing Dylan and trying to forget we were all in this room because we did not know what was going to happen. The unknown carries, pound for pound, more fear than anything else. The evening came without any answers, Dylan’s friend went to a hotel, and we slept as well as you can in a hospital when thoughts of death are floating around. The morning arrived and we waited. Dylan’s friend arrived, my wife and I ate some breakfast in the cafeteria and when we got back to the room one of the Oncology doctors laid out the rest of the day for us: blood tests, bone marrow draw, and a sonogram of his nether regions. We decided that Dylan’s friend should attend the sonogram and that I should run home and get supplies for the long haul.

Living two hours from Seattle was going to provide some unique challenges but with the diagnosis still unknown I drove home to pick up clothing for the next few days. It was easy to distract myself by listening to sports radio, the entire region had been wrapped up in the Seahawks’ Superbowl run and after the improbable loss the airwaves were full of anguish and second-guessing. People called into the AM stations to talk about how hard it was to get out of bed and how depressed they were. There are times when the cosmic ironies of the world are drawn into sharp contrast and this was one of those times for me. Sports have always been important to me, but I have never cried at a loss, I have never felt a deep connection to a team that would lead me to get depressed after a loss, and when your son is in the hospital the psychic pain people feel because Pete Carroll didn’t run the ball from the one-yard line is absurd.

I arrived at home, packed fresh clothing, showered, and waited for my daughter to get home from school. My mom had filled in at home for us and we talked for a little bit about what was going on. My mom is a retired nurse and has always been a great resource for medical advice, but I did my best to steer the conversation away from the darkest possibilities.

When my daughter got home, I spent time with her to see how she was doing, she was bothered by all the attention at school and just wanted to get through things as normally as possible. I left and drove back to Seattle.

The evening brought the first piece of solid information, there were cancer cells in the stomach fluid but the liver was functioning and there were no tumors there. Dylan took a deep breath and asked, “So, I have cancer?”

“Yes.”

I don’t know how it feels to be 20 and have a doctor tell you that you have cancer, but I do know how it feels when your healthy son goes from having stomach pain to being diagnosed with cancer in the matter of a few days, it’s scary. We all had a good cry and I felt an incredible relief, it wasn’t liver cancer. Soon after the news the lead Hematological Oncologist arrived to give more detail. There were terrifying possibilities, “the cancer could be in the spinal fluid” but the words I chose to remember were these: “This is a highly aggressive cancer, which is good because highly aggressive cancers are easier to treat and CURE.” We asked lots of questions and the answers were all very reassuring. More tests would be done, a port would be put in Dylan’s chest so he could begin Chemotherapy, and they thought they knew exactly what type of Non-Hodgkins lymphoma it was.

When Dylan was asked if he had any questions, he paused, thought for a moment and then asked, “Will I have superpowers after Chemotherapy?”

Categories: The Longest Journey

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15 replies »

  1. Jon, I realize we don’t know one another, but I’m a half hour east of Seattle in Sammamish. It’s a stretch to offer help but truly, if there is anything a stranger can do beyond the listening and offering of encouragement, do let me know. I’m not employed now and have some time on my hands. We are nearby, and my wife’s dad was in a similar position some time ago. I’ve had a taste of this but not the same as you. So, for what it’s worth….Cheers, – Bill

  2. Jon, Please know that my Prayers and special thoughts are being held up to God for Dylan and strength for you and your family.

  3. So many prayers are coming Dylan’s way and for the family as well. Our best wishes and belief that Dylan’s “superpowers” are already kicking in!!

  4. And through it all he has a sense of humour! I’m keeping you in my prayers as I’m at a loss for words. I’m with Scott, tell him a lot of strangers he’s never met are all cheering him on, and keep strong!!

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