Facing Fate

“God sends children for another purpose than merely to keep up the race--to enlarge our hearts, to make us unselfish, and full of kindly sympathies and affections; to give our souls higher aims…” -   Mary Howitt

Tristan Gore, 12, is dying. Her teacher, Tabitha Kosmas, contacted me at the Press Gazette and asked me to do a story a couple of weeks ago. The focus of my story was to be on the fundraising at Avalon Middle School to send Tristan to Jacksonville for a bone marrow transplant. Tristan’s dad had lost his job and the money was going quickly. Tristan was in Sacred Heart Hospital at the time and her family had hopes she would soon be released. They were excited about the prospect of a transplant helping Tristan to beat the Leukemia she had been battling.

Avalon Middle School held a silent food auction during the last week of school and raised over $1700; but there isn’t going to be a trip to Jacksonville for a bone marrow transplant. Tristan was released from the hospital last Friday and doctors at Sacred Heart and the Nemours Clinic told the family there is nothing else they can do for Tristan. She has two weeks to two months to live.

“They told me she could stay in the hospital, or she could come home. Tristan wanted to come home to die,” Bridget Hodge, Tristan’s mother, tells me. Bridget fights back tears each time she tries to talk about her daughter’s impending death. “Tristan told me she has talked to God. She knows she is dying. She says God is preparing her house for her in heaven. She is telling me who she wants to have her things, just little knick-knacks, but things that she wants people to have when she is gone. She told me she wants to be cremated, so she can go home [to Alabama]. Hospice says she needs to see us cry, that she needs to know that we are sad, but it is hard,” says Bridget.

Lee Hodge is Tristan’s stepfather, but she calls him Dad. He says he doesn’t consider himself a stepparent. “Both of them, Tana and Tristan, they are my little girls and I would do anything for them,” says Lee. “I don’t deal well with this kind of thing, with all the people, the whole thing. Sometimes I feel like I am cracking up, but I have to be strong for my girl.  I try to stay in my room a lot; I have video games and a TV to distract me. I don’t like to let her see me upset. She is my girl, her and her sister, they are both my baby girls. It is just too much sometimes to deal with,” says Lee.

 Tana Gore is Tristan’s 14-year-old sister. She will be going to Pace High School next year, and she attended Avalon Middle with her sister last year. The girls seem to be very close and even at a difficult time such as this; the sibling rivalry is still present. “When is she going to go back to sleep so I can get a turn on the computer?” Tana asks her dad. Tana jokes about fighting with her sister over computer time. I tell her my girls do the same thing. While she jokes, she has tears in her eyes. You can tell she is fighting the urge to cry. She walks into her sister’s room and climbs onto the bed with her, being careful not to bump Tristan; she doesn’t want to hurt her because “she is sore.” It is obvious this family not only loves Tristan; they are also fighting to carry on in an everyday manner for her. They want her to feel normal.

I visited Tristan at her home in Pace on Tuesday. Tristan was lying in bed with her puppy, Princess, and a laptop computer. “I get on MySpace and play games on line and stuff,” says Tristan. I ask her if she talks to local friends on MySpace. “I haven’t been able to really meet any friends since I moved here. I haven’t been able to go to school,” Tristan replies. Tristan shows off her freshly bandaged torso. She had half of her lung removed last Monday and she says she is glad to be home after “all the tubes and stuff.”  Tristan snuggled up to her puppy and burrowed under the covers as she and the puppy played together.

Tristan told me she had some things to say. She wants me to write down some messages for people. She wants to thank all the doctors and nurses at Sacred Heart Hospital and at the Nemours Oncology Clinic. “I have to thank ‘Chachi’,” Tristan giggled as her parents explained to me this was a nickname for Dr. Assanasen, who realized his name is too difficult for most children to pronounce, so he tells them “Just call me Chachi.”

“I want to tell the others thank you, too. Dr. Schwartz, Dr. Northrup, and everybody at the hospital and the clinic,” says Tristan. “I want to thank all the children for sending so many cards, too many,” she giggles. “All the sixth and eighth graders at Avalon sent cards.” By this time, Tristan is almost whispering. I decided it is probably best to let Tristan rest and moved into the living room to talk to the family and friends who are rallied around in support of Tristan.

Vicki Smith is Tristan’s grandmother. She traveled from Birmingham to be with Tristan. She had just returned from taking ‘Princess’, Tristan’s puppy, for a walk. Tristan had told her dad to go see where her dog was because ‘it doesn’t take that long to walk a dog.”

“I had to go for a walk to keep her [Tristan] from seeing me get upset. I don’t like to cry in front of her, but it is hard. This is just really hard. I am not going to go home until this is finished, until it’s over,” says Smith.

Kosmas, Tristan’s teacher, tells me about Tristan’s trip home from the hospital. “Mark Ciano [Ted Ciano’s of Pensacola] provided a limo for her to come home from the hospital, and the driver, Mr. Floyd volunteered his time. She really liked riding in the limo,” says Kosmas.

Kosmas says Tristan has been a great student. “Tristan went on a Make-a-Wish trip the second week of May to Disney World in Orlando. She spent the entire ride up there doing homework so she could pass the sixth grade. She is a really hard worker; she is a great kid. She had to leave Disney World a day early because she was feeling bad. She got back on May 15 and was admitted to the hospital that same day,” says Kosmas.

Lee Hodge says his daughter went on a helicopter ride last month, courtesy of Heliworks. I asked him if she was frightened to go on the chopper. “Tristan wasn’t scared at all, she loved it. The next day we went on a Blimp ride and she loved that,” says Hodge.

Tristan turned 12 in January, but she wasn’t able to celebrate her birthday. There hasn’t been much time for the family to do anything other than medical visits and surgeries. “Tristan doesn’t know it yet, but she is having a birthday party on Thursday [June 26] at the Milton Elk Lodge on Highway 90. There is going to be a clown, a magician, and Boogie Incorporated is going to DJ. We wanted to give her a great party because she missed celebrating her birthday this year. Everything at the party has been donated,” Kosmas tells me.

“The family has a real need right now for a lot of things. They don’t have any income; the dad wants to be home with Tristan for this little time she has left. The church sent over some food for them, but any donations of food or money would be great,” says Kosmas. “There is an account established for Tristan at Wachovia Bank. The account is in Bridget and Tristan’s names. The family doesn’t have any insurance and they are out of money, so anything they can get would help.”

As I prepared to leave the home of the Hodge family, I took one last peek in at Tristan on my way to the front door. The room was packed with more people than you would think could safely fit. Tristan’s sister and stepbrother along with other family and friends were all surrounding her and making jokes while Tristan cuddled ‘Princess’.

As I drove away, my mind kept coming back to something Tristan said when I was talking with her in her room. We had been chatting about my baby having surgery and the surgeries I had in 2000 as a result of cancer. We were sharing hospital stories and showing each other our battle scars. Tristan had lifted her shirt to show me where a pleural tube [a chest to drain air and/or fluid] had been inserted between her ribs. She looked at me with a tiny hint of a smile and said, “There isn’t a scar yet.”

Tristan, you may not have enough time left to develop scars from your recent surgeries, but you have certainly left a mark on me. You show courage, humor, and acceptance while facing the end of your life with dignity and faith.