Senior Defeats Cancer

“The cancer cells in bone marrow take over everything,” Dr. Jignesh Dalal, Director of Bone Marrow Transplant at Children’s Mercy Hospital, said. “They don’t allow normal blood cells to be made in bone marrow, and you need your blood cells to survive.”

The prognosis wasn’t good. Rachel didn’t want to know what her chances of survival were, but her mother, Torie Clarke, wanted to hear it. She wanted to know what Rachel was up against.

Rachel had a 15 percent chance of making it past five years.

“She shouldn’t be alive,” Clarke said. “There’s no reason – medically, clinically, logically – that she should be alive.”

There might not be any explanation for her escape from death, but in life, Rachel Hoffman has always searched for the good in a bad situation.

***

Growing up, Rachel was an adventurous child. She loved climbing in trees, rock climbing and riding her bike. She was full of energy, full of life.

All that slowly began to change in the summer of 2004, when Rachel was 12.

She began getting colds, and it became harder to shake them. Once one cold went away, another would emerge immediately. She used to ride her bike to her elementary school in Olathe, but as she became more and more tired, the rides got harder and harder.

“My immune system was just not able to cope with anything,” Rachel said.

Clarke noticed slight differences in Rachel’s behavior, but she always had a reasonable explanation for it. Rachel was just tired, she thought. She hadn’t been eating enough. She was stressed over a test. Typical teenage stuff, she thought.

It was the other people that Clarke encountered that seemed to fear something more severe.

“We had several friends that would see Rachel and go, ‘She’s kinda pale,” Clarke said. “It’s almost like they knew better than I did.”

Finally, in November 2004, when Rachel’s sister, Karin Hoffman, was in for a routine appointment about her asthma, the long road to recovery began. The nurse practitioner took one look across the room at Rachel, and asked how recently she had checked her hemoglobin. After a quick conversation, they set up an appointment for Rachel to get her blood drawn at the beginning of the calendar year, once her father’s insurance had switched.

On Jan. 4, 2005, Rachel underwent blood tests so doctors could attempt to figure out what the problem was.

“I had been terrified of needles,” Rachel said. “They used a butterfly needle to draw blood, and I thought, ‘You know, maybe it’s not so bad.’ Little did I know, I’d be getting stuck a lot.”

The next day, the results came in, and Clarke got a call. They needed to get down to Children’s Mercy Hospital as quickly as possible. Ninety minutes later, they arrived at the hospital, and Rachel and her parents listened as the doctors told them what the prognosis was.

The weather outside was snowy, horrible, nasty, and Clarke didn’t feel much better inside.

“I really wish he’d told me to sit down,” Clarke said. “You felt like you got punched in the stomach, and that was just the very beginning.”

After all the uncertainty, all the tests, all the confusion, one thing was clear: Rachel had cancer.

“Our world has never been the same,” Clarke said.

On Jan. 5, 2005, Rachel Hoffman’s battle began.

***

Rachel was never a fighter. Clarke remembers seeing kids take her daughter’s toys, and Rachel never put up any objection. She had always minded her business in a quiet way.
She had never fought for anything, and now she was forced to learn how to do so while fighting for her most prized possession: her life. Rachel avoided thinking about her fate. To her, it didn’t make a difference.
“Either I fall into one category or the other,” Rachel said. “There’s not a whole lot I can do about either category, so why waste time worrying about it? If I’m going to be in the larger category, I might as well not worry about it and do as much as I possibly can.”

“I’ve always had a book in my hand,” Rachel said. “Usually somebody else has a problem, and it’s not my problem to think about.”

Rachel pored over books of all lengths and authors, but they were mostly of the same genre: fantasy.

“When I read, I want to read something that’s not in this universe, because I get enough of this universe as is,” Rachel said. “You can do things you want in your head. Things can be other than they are. I look differently in my own head – I look like I did before I was diagnosed.”

She says that she read “The Trumpet of the Swan” by E.B. White over and over as a child. After the transplant, she picked it up again. It was a quick read, taking about a day. In those moments, it became her favorite book to read again and again. It comes as no surprise. The story’s main character is born without a voice, and is forced to overcome his physical obstacle.

Just like Rachel.

***

Beating the odds involved more than just isolation for Rachel. She underwent multiple blood transfusions, a few rounds of chemotherapy and eventually received a bone marrow transplantation from a 32-year-old man.

The process was a tough one on Rachel. Her hair fell out. Her stomach felt upset. She was always tired. Her immune system had been worn down by the chemotherapy, and she was always at risk. She couldn’t go to movies, couldn’t eat at restaurants, and couldn’t even go into the sun as often. But the struggles didn’t stop at physical pain. About a year after the diagnosis, Rachel began feeling depressed.

“I didn’t have any emotions,” Rachel said. “You start to become isolated, because you can’t do the things that you used to be able to do, and you’re not allowed to do the things that you used to be able to do.”

There were moments that gave the family hope. Just after one of the transfusions, Clarke began to make grilled cheese for Rachel, and then she moved on into the laundry room. Rachel took it upon herself to flip the grilled cheese, and Clarke was shocked.

“That’s the smartest thing you’ve done in six months!” Clarke told Rachel.

Though the road would be long, hope was there.

“She had her brain back,” Clarke said. “She had herself back.”

Rachel endured several setbacks during the recovery process, including cataracts in her eyes and scar tissue in her lungs. Most recently, she is battling a case of grafts vs. host disease, which occurs since her blood is different from the rest of her organs and skin due to the transplant, and the blood attacks them. Her joints have calcified and her skin is stiffened up. Rachel currently can’t extend her arms past a 90 degree angle due to the calcification in her elbows.

Despite all the complications, Rachel finally began to receive some good news in 2007. She was undergoing constant blood tests, and the cancer cells were present less and less frequently, until the cells stopped showing up entirely. She had beaten the odds. An 85 percent chance of death, a near certainty, had been defied by a few medical procedures and a 70-pound girl that refused to give up hope.
Rachel continues to defy common logic, and she is even teaching her doctor a few things.

“What I am learning from her is in spite of difficulties, keep on smiling,” Dr. Dalal said. “It is so satisfying to see her after going through all of this that she’s able to go to school, able to study. I am giving her example to my other patients that with determination, fight and hard work, you can beat leukemia.”

After her triumph over cancer, Rachel and her family are working is working to find a balance between being careful with her health and keeping her from living in a bubble, shielded from everything in the world.

“You need to be cautious, you need to be intelligent, but there’s a line where you can’t live your entire life in the house with the shades drawn,” Clarke said. “There’s a point for me where I’d much rather have her live as much as possible, even if it kills her. If getting out and living means that potentially it could kill her, that’s God’s choice – not mine.”

***

After transferring to East during the 2008-09 school year, Rachel began working on her GED. She is far enough behind in her credits that she had to push back her graduation from last year to this year. Despite all the work she’s doing for herself, she hasn’t forgotten about the kids that are in situations similar to the one she endured.
Rachel, Clarke and Karen Anthony, a nurse at Children’s Mercy Hospital, are all working together to found RaJa’s, a community center and school for immunocompromised children from ages 2-18. The center was named with the first two letters of Rachel’s name and the first two letter’s of Jason, a nurse’s son that was killed in a car accident. Rachel’s role in the center is fundraising. Since the center’s total start-up costs expect to be around $1 million, she’s helping write applications for grants and looking for connections to large donors. She even set up a golf tournament and is working on a making a run for RaJa’s. There is currently a RaJa’s Facebook page, and Rachel said that they hope to get a website up and running soon.
For Rachel, it was a no-brainer to make a place like RaJa’s.

“There needs to be some place for these kids to go,” Rachel said. “I was alone. I would have been able to relate to kids much better. I would have had a lot less of the depression that I had, since a lot of it was the isolation and not having anyone to talk to.”

Clarke sees her daughter as the perfect person to advocate for those in a situation similar to what she underwent.

“If anybody knows what [the kids] in that position need, it’s Rachel and if anybody is going to be capable in articulating that and succeeding in that goal, it’s Rachel,” Clarke said. “It gives her a goal. I think RaJa’s has been one of the best things for giving her something to look forward to, for giving her direction, for giving her a reason to not die.”

Dr. Dalal said that Rachel’s hair will grow back, and his staff continues to search for treatments to help her joints. The odds of a relapse into cancer are very small, according to Dr. Dalal, and he predicts that she will have a normal life expectancy.
“It’s finally starting to get where I can think about the future,” Rachel said. “You don’t think past a week or two from now. You don’t make plans because if I get a fever over 100.5 degrees, they stick me in the hospital for up to a month, and you never know. We’re actually starting to be able to plan ahead.”

For a girl so fascinated by stories of fantasy and the unknown, Rachel Hoffman is starting to enjoy the benefits of certainty.