“We are very near the end, but have not and will not lose our good cheer.” – Robert Falcon Scott
This picture means so many things to me…I see the look in his eyes, I don’t see fear or anger and that impresses me. Tucker insisted on having a glass of sparkling cider with Dr Chang before they discussed his treatment plan. Tucker knew his kidneys were failing and he knew that the cancer had not gone into a second remission after his final chemo attempt, his counts had not returned and that the fungal infection in his blood was still uncontrollable. He had a choice to go into the PICU for a week straight of dialysis to clear high levels of toxins from his blood but that would do nothing for his counts, the cancer or the infection. Nor would it guarantee that the kidneys would ever heal. Tucker knew he was not eligible for transplant nor would he survive that kind of surgery. So with his wise old soul he decided he would rather not do any more procedures and he asked us to call all of his family around him to celebrate with him his life.
When Dr Chang entered into our hospital room he motioned for me to get the drinks ready. He knew why his doctor was there. To give him his options and advise him of the poor prognosis he faced. Tucker had grown to care deeply for Dr. Chang and he could see how hard this was for him. So to break the tension in the air he just wanted to celebrate for a moment the battle that they had fought so hard together. Side by side, oncologist and patient. After discussing the options he faced and the likelihood that it would do little good to the overall hope for survival, Tucker asked a few questions and then said, “I can either go to the PICU and get hooked up to a machine and stay there for the rest of my life or I can stay here with my family, in my room for the rest of my life.” I could see the sadness in Dr. Chang’s face and he confirmed to him that he didn’t know how long Tucker would have left in either place. Tucker looked down for a moment and cried for a brief second, took in a deep breath and looked at his doctor. “I want to stay here and go on my river boat cruise and out to my fancy dinner with my family.”
We all sat quietly for a minute to let the decision soak in. Tucker was the first to speak….he had one more question for his doctor and friend. “So, who do you think would win if Superman and Batman got in a fight?” It was a question they had contemplated often during his treatment. They discussed the comic The Dark Knight in which this epic battle takes place and as promised Dr. Chang later brought him in a copy.
Tucker made a special effort to connect and say good-bye to everyone he cared about in his final days. He wrote a Valentine to the girl he thought was cute. He told nurses, staff and teachers that he loved them, he gathered all his family around him for a special dinner and river cruise that he requested and The Children’s Cancer Association put together for him in less than 24 hours. He tried lobster and red wine. He sucked helium balloons for the first time and laughed and sang with family and friends. He played and won a game of Magic the Gathering against a skilled friend and competitor that he admired. He played with his cat Stanley. He ate pumpkin pie and told us what he wanted his celebration of life to be like. He asked for the charity to be started and let me know that he wanted to be cremated, that he didn’t want his ashes spread but rather “put in a vase to stay with you.” In the end one of the last things that he said to me was that he was ready to go. That he was done being sick, that he wanted to make sure we would be ok and that we would not be too sad. He woke up early in the morning on the 15th and had chocolate milk with his dad, in their own private good-bye. A few hours later he slipped into a coma like sleep that he stayed in until the early hours of the 16th when his body finally let go.
I am still trying to not be too sad as Tucker requested. Grief has this ability to sneak up on you and knock you down like a tidal wave. Simple little triggers are all around, smells, sounds, sayings, pictures…even doing things that I know Tuck would of loved remind me that he is not here to do them. As time drags on my heart aches for him, I have never missed something so much as I miss his presence. Even the sound of his breathing is a melody I long to hear again. I am determined to get up in the mornings and be as brave as he was, although he was much better at it than I am. I try to remember that in the end, although it was a dark place, Tucker chose to celebrate life, love, family and friends and not wallow in pity.