(Note: I took the liberty of correcting a time-line error regarding the transplant procedure, otherwise the following article is very accurate and does a remarkable job of capturing Travis' spirit and our family's attitude during this difficult time. The corrections I made are underlined .) Melanie Goldish.
Chicago Jewish News Intern
A colorful, hand-painted, sign greeted visitors to Beth Tikvah Congregation in Hoffman Estates recently. "Welkum to the Bone Marew Drive," it said.
In the lobby were close to a dozen photos of the sign's artist, five-year-old Travis Yon. Photos of Travis with his 4-year-old brother, Spencer, photos of him with his family, a large photo of him proudly displaying a 17-inch catfish he caught just a few weeks ago in a pond near his house.
In the photos, he looks like a typical five-year-old. The kind who is first learning to enjoy some of life's simpler pleasures like riding a bicycle, playing baseball, or reading a book. The kind who is still young enough to hold his parents' hands without feeling self-conscious. All of which are things Travis loves to do.
Even now, at times it seems Travis is a perfectly healthy little boy, just like any other little boy. But then he will complain of a headache, or nausea, and you remember what this five-year-old is having to deal with.
Travis Yon has a very rare form of leukemia, something discovered this past May. And since this past May, Yon's life, along with that of his family, has been turned upside down as a result. But as difficult as it has been, it has resulted in an outpouring of support and caring, especially from members of Beth Tikvah, where Yon's mother, Melanie Goldish, was president, until she resigned in May to devote herself to Travis.
Just how much the synagogue has done to show its support was made clear at the bone marrow drive.
"The National Marrow Donor Program told us 100 people is a good turnout. We had 423," said Joe Yon, Travis' father. "I don't want to be cliche, but I was blown away."
Travis himself made two appearances at the drive. The first was in the morning to welcome those who came. The second was to meet Chicago Cubs great Fergie Jenkins and have a couple of baseball bats autographed.
Jenkins not only greeted people, but donated several items of Cubs memorabilia for a raffle, which raised funds for the "Friends for Travis Fund" which Beth Tikvah created to help the family pay for expenses not covered by medical insurance.
"There are so many costs that you don't think about," said Emily Solberg, a family friend who was instrumental in setting up the fund. "For example, when Travis started taking medication, his face swelled up and his glasses didn't fit, so they had to buy new glasses, things like that."
Although the obvious reason for the drive seemed to be to find a donor, Solberg said that was not its true purpose.
"The purpose was not to find a match," she said. "That would be nice, but it's highly unlikely. The purpose was to show support."
And support the synagogue has indeed shown. Besides the fund, the synagogue has enlisted a small army of community volunteers to do things the family doesn't have time for right now.
"We set up a dinner schedule so meals are being delivered two to three times a week," Solberg said. "Neighbors have organized to do (their) yard work, and we hired a cleaning service, since we didn't think we should be going through their house."
Though it is not glamourous work, Solberg says there has been no shortage of volunteers.
"People have been great," she said. "We've had people with no affiliation to the synagogue or the family volunteer."
Ever since Travis' illness began, the family has tried to carry on as normally as possible. But it hasn't been easy. For example, originally, the medicine Travis was given made him hungry all the time. Then he changed to a different medicine and he barely ate, since he felt full all the time.
"It has been quite traumatic," Goldish said.
But, she said, things are getting better. "The first month was quite difficult. He was on real high-intensity chemotherapy, which he still is, but now he's in remission. When he first started going to chemo, he was very lethargic. Now he's back to his old self."
Most of the time anyway.
"He acts like his old self probably 90% of the day, and maybe 10% of the day he'll have a headache or be nauseous," Goldish said.
Travis still shoots baskets on the mini basket in his basement, still plays baseball with Spencer and their dad in the front yard, and he still goes fishing at the pond near his house. Learning to ride a two-wheeler has been postponed for a little while, though.
"When I feel all better, I'll learn to ride without training wheels," Travis said, "One time I rode all the way from (the beginning of the driveway) to the garage," (a not unimpressive distance of roughly 30 yards).
Like learning to ride a bicycle, once you fall down a few times you no longer fear it as much. So it goes with Travis and the barrage of medical treatments he must endure.
"I don't mind (getting shots) too much," he said.
Travis does not need too many shots, since doctors put in a central line the day he was diagnosed. The central line is a tube connected to his heart that extends outside his body, hanging freely down to his stomach. Most of his medicines, including chemotherapy, can be administered through the tube without needles.
When asked if it hurt when the central line was put in, Travis said, "No, because I was asleep.
"I do have to get used to it though, because I never had one before."
When he does need to get shots, which is not uncommon, he has found a way to deal with them.
"I just write it in my book," he said.
Travis' book, titled "My Stupid Illness," is a diary for children with serious illnesses. Travis records how he is feeling, what he is doing and the like.
"He loves to read and write," says his father. "He reads at the 2nd grade level and he even keeps a diary (in addition to his book) that he writes all by himself. Sometimes we help him spell words but he likes to try to sound them out on his own."
His brother Spencer also has a book in which he records his feelings about how his big brother is doing. His parents say Travis' illness has been confusing and difficult for Spencer for several reasons. For one thing, his brother and best friend is very sick, and at 4-years-old, there isn't much he can do to help. For another, it means he gets less attention than he used to, which is hard to adjust to.
To cope with the problem, his parents have looked for ways Spencer can help his brother out. Every day, when Travis has his central line flushed, a procedure his parents do to keep the line clear, Spencer is there to help.
"If (Travis) is not feeling well, Spencer will get his blanket for him," Goldish said. "He'll try to say things to make him feel better. He told Travis to think of the medicines as Pac-Man fighting the leukemia."
Another thing that family has done is try to give the boys choices, so they feel they have some control.
"We didn't choose to (have this happen)," Joe Yon said, "But we can choose how we're going to deal with it."
For example, Travis can choose when he wants to take his medicine, before dinner or after dinner. If he is especially brave while getting a shot, he might get to choose between one reward or another. Sometimes, Goldish said, the choices are nothing more than what kind of ice cream the boys want for dessert. Although they seem like small things, the family feels it is very important to take control where they can, to avoid feeling like victims.
Despite all the family and community support, the odds of recovery are not good. According to Travis' doctor, Jong Kwon of Lutheran General Hospital, a child's odds of recovering from leukemia are usually very good. But Travis has a rare strain of the disease called Philadelphia Chromosome Positive, which accounts for only about two percent of cases and is a much more high risk form of the disease.
"About 80% of children with leukemia recover with chemotherapy," said Kwon. "But with Travis' type, that falls to about 25 percent with chemo alone. With a bone marrow transplant, the odds rise to 50 percent."
Doctors initially diagnosed Travis with Acute Lymphocytic Leukemia, the most common and curable form of the disease before discovering the Philadelphia Chromosome.
"Three days (after the first diagnosis) we felt like we'd been kicked in the head. We were in a fog for a week," said Goldish. "They told us he had the Philadelphia Chromosome, which affects only one of every three million children."
Travis' doctors felt the best treatment was to begin chemotherapy, and immediately start looking for a donor. Travis' parents and younger brother were promptly tested, but none of them matched.
Once Travis began chemotherapy, he went into remission, but Kwon cautioned that while 99 percent of children respond initially to chemotherapy, 20 percent will relapse.
"He's doing very well," Kwon said. "He has a very supportive family and he's doing very good. But nobody knows what his ultimate prognosis will be."
Kwon admits that while the odds are not good, odds don't tell the full story.
"With an individual patient, there is no way we can tell," he said.
Travis' parents believe he will beat the odds, and not just because he is their son, although obviously that plays a big part in it. There is something about Travis, something beyond the belief a parent has in their child, that makes it seem possible.
Spend some time with him and you soon forget he's only five years old. He seems all at once more gentle, more mature, and more compassionate than his age would suggest.
"His strength and courage and kindness will get us through this," said Goldish.
Case in point: when Travis was first diagnosed in early May, he received several balloons in his hospital room.
"I had six balloons and I said, 'You know, I have a lot of balloons, I think other people could use a few,'"
So Travis and his dad checked with the nurse and received a list of children who had not received any balloons or packages.
"So I started walking down the hall with the balloons and a doctor would go in and give it to the (patient) or his mom or dad," recalled Travis. "It made me happy, just because when you do something nice for somebody else it makes you feel happy inside."
Afterwards, his father says Travis told him, "That felt so good, let's make get-well cards for those kids now."
Another time, Travis had to have a painful shot in his thigh that made his entire leg sting. To distract him, one of the nurses offered him a choice of two stickers. Between sobs, Travis said, "Can I have them both so I can give one to my brother Spencer?"
Not that Travis and Spencer are suffering any shortages of balloons, packages, or stickers. They have received cards from Israel and other places, including Antarctica. One day, Travis received a Nintendo Gameboy in a package and his father remembers thinking, "This will go over well, two kids and one Gameboy." Just a couple days later, they received a second Gameboy from someone completely unrelated to the first person.
Travis certainly doesn't mind all the gifts, most of which come from complete strangers, but he does get bothered by certain kinds of cards.
"I don't like when they say 'I hope you feel well' because it makes me think about my leukemia," he said.
Instead, Travis prefers funny stories or jokes. He loves knock-knock jokes. He has a whole book of them, one of many in a backpack he takes with when he goes to the doctor's office.
"I have lots of stuff in there so when I go to my appointment, it doesn't feel like I have to wait so long," Travis says.
He and Spencer have received so many toys and puzzles and games that the floor is covered with them.
"Now I think we have enough toys," Travis said. "Maybe we could give them to other children," he suggests to his parents.
"What kind of children?" his mom asks.
"People who don't have any toys or no money to buy toys," he says, "Maybe we could give them some money."
To this, Goldish says, "The stuff that comes out of his mouth is..."
"Wonderful," interrupts Travis, a self-satisfied grin on his face.
It's that spirit that makes his parents believe in Travis' chances.
A spirit that shines through when Travis talks about going to synagogue.
"What's your favorite part of the service?" asks Goldish.
"The Oneg," Travis says, laughing.
"And what do you like to do in services?" she asks.
"Color," Travis says.
You can tell they've had this conversation before.
"And what else?" she asks.
"Just sit there quietly," Travis says, beginning to smile.
"And what else?" his mother asks.
"Sleep," Travis says, now bursting out laughing.
"They've gone to synagogue since they could barely walk, so they're comfortable there," said Goldish. Travis and Spencer also both attended Beth Tikvah's preschool.
Goldish said her family used to go to services almost every Friday night, but haven't been able to since Travis was diagnosed. Despite their absence from services, however, the family has had "regular communication" with Beth Tikvah's rabbi, Douglas Kohn, and has tried to find strength in their Judaism throughout Travis' illness.
"Travis has an incredibly deep-seeded Jewish identity for a 5-year-old," Goldish said. "He understands a lot about services. When one of his friends was sick, he called out his name during services. Now, he knows a lot of people are saying prayers for him and hoping he gets better."
Travis' father says Travis knows what the situation is medically, as well. Joe Yon said Travis knows he has leukemia, knows he is sick and will need a bone marrow transplant. He knows there may be some pain along the way to recovery and he will have to be brave. He does not know that he might die, though.
To remind him to be strong, Travis and his family wear carabiners on their clothes, the metal links used by mountain climbers to support them if they ever fall. They were sent by Goldish's company. Travis' and Spencer's even have their names engraved on them.
"What does it mean?" asks his mother.
"Strength... Courage..." Travis says tentatively.
Again you sense they have talked about this often.
"Why do you wear it?" she continues.
"Cause I think I can get rid of leukemia," Travis answers, this time more firmly.
Regardless of the odds, Travis faces a long struggle.
Though Travis' immediate family is not a match for a transplant, the odds of finding a bone marrow match are good, somewhere between 75 and 85 percent. But finding a match is just the beginning.
If a match is found as a result of the international search, Travis and his family will go to Wisconsin Children's Hospital in Milwaukee for the bone marrow transplant. Travis will be kept in isolation for four weeks following the transplant. Prior to that time he will undergo intense chemotherapy and radiation treatment. The purpose is to severely weaken his immune system so it won't reject the donated bone marrow, as well as to destroy any living cancer cells. Then Travis will receive the marrow, which is injected through his central line.
"He won't even feel it," Goldish said, "Well, actually he'll feel it, but it won't hurt at all."
After that, the family will stay in Milwaukee for at least 60 days so Travis' doctors can follow-up on his progress, and can be there if anything goes wrong.
Goldish said they have been told to plan on staying for three to four months in all.
Until a marrow donor is found, provided Travis stays in remission, they will try to carry on as normally as possible. He is taking a class this summer, "Safetytown" which teaches about household safety issues like what to do if there's a fire.
While there are still constant reminders of Travis' illness, not all of them are negative.
After the bone marrow drive, Travis and his dad went on a trip to Great America, sponsored by Chai Lifeline, a Jewish organization that provides support to children with cancer and their families.
"It was fun except I got soaked," Travis reported.
The family has also been contacted by the Make-A-Wish Foundation, which works to fulfill the dreams of seriously ill children.
Make-A-Wish often helps families go to Disney World and Travis has never been there, so when Goldish suggested it to him she thought he would jump at the chance. But Travis had other ideas.
"My wish is to go to Israel,"he said. "I want to go to the Western Wall in Jerusalem and put something in those cracks, like a note or something."
"What would the note say?" asks his mother
This time, there is no sense that they've had this conversation before.
Travis, a 5-year-old boy who has every reason to be angry, to be depressed, to ask 'Why Me?' answers without pausing.
"I would say 'To G-d, From Travis, thank you for this wonderful world."
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