Attitude from the gut

Today, February 1st, 2017, is a special day...

Hair was a defining feature of Trent from the day he was born with a full red mop of it in 1994.  His first haircut was at five weeks old.  Trent had more changes in styles, colors and spikes before high school than I have had my whole life, so I was concerned when he decided to have his head shaved in preparation for chemotherapy.  It was his senior year in high school, a week after taking his senior pictures and his hair still looked great, so I reminded him, “The oncologist said some people don’t lose their hair.”  Trent responded, “I just want to get it done.”  The morning he showered for his haircut appointment, strands of hair began to run down the drain; and during the haircut, the woman who had cared for it since he was a toddler cried.  Trent seemed fine.

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Trenton was diagnosed in late 2011 with Hodgkin's lymphoma in his abdomen (thus the "gut" title), and oncology was a new area of the hospital for us, but Trent treated it as just another hospital visit.  Our dog, Snowball, probably thought that Val took the germ thing too far.

As chemo and the associated discomforts wore on, I wondered how Trenton’s attitude would hold up, so I asked him.  It was late at night in Trent's room at Children's, with lights extinguished, monitor screens and LED's from assorted pumps sufficiently illuminated our space as I watched Trent, in pain, leaning on a counter.

“Trent?”

“What,” he groaned.

“Are you starting to get those feelings like ‘why me?’ and ‘it’s not fair,’?”

“No.”

“Are you sure?”

“Yes.”

“Good, because there are kids who have had an organ transplant, and there are kids who have had cancer, but few who have had both.  There are a lot of kids going through what you are now, and they may get those feelings that it’s not fair.  Keep your attitude positive, because you can be a great example to help them.”  “I know,” was his only reply.  And that was the end of our discussion.

A couple weeks later, however, I asked a friend who had survived the same type of cancer to come visit Trent.  They shared war stories of discomforts, but following a brief moment of silence, Trent commented, “Well, I've been through worse than this.  I've had a heart transplant.”

The day for which we had waited – our final oncology appointment - finally arrived.  I was a little anxious in the waiting room of the oncologist, and as we walked down the hall and into our consult room.  We waited only briefly, however, until a nurse walked in with two wrapped gifts.  “We always bring gifts when someone is done with chemo,” she said.  We paused momentarily, looking at each other...  Did we just hear what we thought we heard?  Valerie sought clarification.  “You mean we are definitely done with chemo?”  When the nurse confirmed, Valerie sat calmly though her face jumped for joy, her eyes lit up as they hadn't in months.  Trenton, however, was emotionless, almost as though he hadn't heard the news.

Doctors Tanya Watt and Priya Mahajan eventually joined us to confirm the good news.  We wanted the tumor to shrink ninety percent and it shrank eighty-nine percent.  The remainder would continue to shrink and a small portion would become scar tissue.  I listened to the discussion, but kept wondering what Trenton was thinking as he sat calmly.  Once we left, walking down the hallway, I patted Trenton on the back and asked, “So, what did you think of the news?”  Trenton, confidently and matter-of-factly, answered, “I knew it.”

Lessons came from the overall experience, but especially the initial meeting with Drs. Watt and Mahajan, three months prior.  Dr. Watt, sufficiently pregnant (although I made no mention of her state, as I had learned long ago to say nothing until the mother is at least a few days postpartum), spoke quickly as she delivered the results in a fashion that made this event seem almost routine.  She informed us that eight percent of transplant kids get cancer and that Trent's classical hodgkins lymphoma was a rare type of cancer for transplant kids.  My stomach and attention both leapt hearing this as she continued, “...and there is an eighty-five to ninety percent success rate with four rounds of chemo and he won't need radiation...”

“Wait wait wait.” I interrupted.  “Go back.  Did I hear you say there is an eighty-five to ninety percent success rate?”

“Yes.”

A quick glance at Trenton revealed no smile, but his eyes lit up slightly and I detected an expression of satisfaction when he processed his odds.

I recently met and shared my Children's connection with Dr. Stephen Skapek, Professor of Pediatrics and Director of Hematology/Oncology, and leading the research lab at UT Southwestern in Dallas (and a very pleasant person).  I told him, "Prior to cancer, I didn't think attitude was as important as people say.  You do your research to find a solution and you just fix my kid, then our attitudes will be fine.  However, Trenton's confidence in a successful outcome helped him through the process; and that confidence came from Dr. Watt’s confidence in ample research.  Therefore, your research is not just providing you with solutions; it's providing the patients confidence.” 

See a bit of Trenton’s attitude here:

So, why is today special?  The final meeting with Dr. Watt was five years ago today.  Trenton is now five years cancer-free (and he's probably not thinking about it).

For those who support medical research, those who do the research, and for the confidence it provides during difficulties, I'm still thankful.