PHILADELPHIA — Emily Whitehead sat by a window in Children’s Hospital of Philadelphia watching the people caught in a sudden rainstorm below run for cover. She had just awakened after sleeping most of the morning.
As her index finger quickly flicked over her iPad, her dad, Tom Whitehead, encouraged Emily to try walking a lap around the oncology floor of the hospital.
With a little persuasion and Tom’s help putting on her socks and shoes — black sneakers with pink trim to match the ones her Penn State IFC/Panhellenic Dance Marathon team wore — Emily stood up to her walker.
After a few steps, her entourage gathered to follow. Tom came next with Emily’s IV pole, and her mother, Kari Whitehead, followed with a wheelchair, just in case Emily grew tired.
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But she didn’t, instead pushing forward with one goal in mind: getting well enough to return home in time for her dog Lucy’s second birthday Saturday. Her doctors, however, said she might beat that goal. She’s scheduled to come home Friday. Seven-year-old Emily has become a celebrity in these parts, and everyone in the hallway — doctors, nurses, other patients — gave friendly greetings and encouraging words as she passed by.
Emily’s own doctors have a hard time believing her rapid recovery from a very sick girl in late April to cancer-free by mid-May. “The doctors that were all involved in those couple of days (when Emily was at her worst) are just amazed when they see her out walking with the walker,” Tom said. “We’ve had half a dozen doctors use the word ‘miraculous,’ ”
But Emily has also garnered attention beyond these hospital walls. An entire town, a university student body and thousands of online profiles have embraced Emily’s story of ups and downs.
Tom explained that his little girl, diagnosed with one of the most common forms of pediatric cancer, just “doesn’t follow the rules.” But, he said, “she’s a fighter.”
‘How fast life can change’
Memorial Day weekend will always hold an additional significance for the Whitehead family. It was two years ago on that Friday that her parents were told Emily had acute lymphoblastic leukemia, or ALL.
Just after her fifth birthday, on May 2, 2010, the Whiteheads began noticing large bruises on Emily’s body, and her nose and gums began to bleed.
Kari, a social science research project manager at Penn State, didn’t hesitate to investigate.
“Those symptoms kind of raised a red flag for us,” Kari said. “I Googled the symptoms and of course the first thing that pops up is leukemia because those are classic symptoms, and I told Tom about it and we were like ‘it’s not possible that she has leukemia.’ ”
After a night of intense leg pain — another symptom — the Whiteheads took Emily to her pediatrician. “You could tell right away that the pediatrician noticed there was something wrong,” Kari said.
A trip to the emergency room confirmed their suspicions: Emily had cancer. Kari started a blog on www.caringbridge.org to keep family and friends updated on Emily’s progress. On her May 29, 2010, post, she summed up the day of Emily’s diagnosis: “So, that’s how it started. One day Emily was out playing and totally fine. The next she is in a cancer center getting morphine every 2 hours. Amazing how fast life can change.” Emily started treatment a couple days later at Hershey Medical Center.
“They told us it was the ‘garden variety’ of leukemia, and that she was going to grow up to be a grandmother, and they made it seem like if we just got through this treatment that she was going to be fine and everything was going to be OK,” Kari said. But Emily’s road to recovery was much more difficult than that.
‘She seemed fine’
After the first week of chemotherapy, her white blood cell counts dropped, which meant she was susceptible to infection. She soon developed necrotizing fasciitis, a severe tissue infection, in her left leg, which rarely happens and required surgery.
The Whiteheads were told that their daughter might not make it through the surgery and, if she did, that there was a possibility her leg would need to be amputated.
In her doctor’s 22 years at Hershey, Tom said, Emily is the only patient to come out of it. After the rough start, Emily’s treatment progressed as expected, with the exception of some heightened nausea and a few hospital stays for fevers.
By October 2011, Emily was getting monthly chemotherapy treatments and saw Dr. James Powell, her doctor in State College, for regular checkups.
After returning from a family vacation, Emily went in for some routine blood work. The results were unexpected. “She seemed fine, healthy, energetic, no symptoms whatsoever,” Kari said. “They took her blood and checked it and came back and said we see her leukemia cells have relapsed.”
The family immediately returned to Hershey for the standard ALL relapse treatment: four months of intense chemotherapy and then a bone-marrow transplant.
The Whiteheads decided to get a second opinion, establishing their relationship with the doctors at Children’s Hospital of Philadelphia, but the suggested treatment there was similar to what they were told at Hershey.
“At that point when you have a relapse, you just want to make sure all your bases are covered, and that you really are doing the best thing for Emily,” Kari said.
Because Emily doesn’t have any siblings, who are ideal bone-marrow donors, she was entered into the national bone-marrow registry, resulting in the most 10-out-of-10 protein matches the hospital ever had in their system, Tom said.
The Whiteheads were told a donor had been identified in the United States and, after a delay, a February transplant date was set. Once again, Emily stopped in to see Powell for routine blood work, and, once again, he had to deliver devastating news.
“She was going to have the transplant in Hershey, but she kept slipping out of remission, and a bone-marrow transplant is only successful if you can get the kid into remission,” Powell said.
‘Blessing in disguise’
In the end, Kari sees the initial transplant delay as “kind of a blessing in disguise” because the doctors said that if she had had the bone-marrow transplant earlier, she probably would have had the transplant and relapsed again anyway.
The Whiteheads were running out of options, and they were doubting the effectiveness other types of chemotherapy might have on Emily’s disease, so they decided to make a second inquiry in Philadelphia.
“At that point, there really isn’t a standard protocol because so few kids relapse again,” Kari said. Tom and Kari were working diligently to find a solution for their ailing daughter, but they were on the clock.
“When we did come down the second time, they told us at Hershey she was within 48 hours of organ failure, so they said ‘whatever you’re going to do, you need to make a decision pretty quick,’ ” Tom said.
Children’s Hospital of Philadelphia had an open trial the day the Whiteheads arrived, but the medication “was to test the dose of the medicine more than to treat her leukemia,” Tom said.
So, they turned it down. “That was probably one of the hardest decisions we had to make,” Kari said. When they arrived at CHOP, the Whiteheads asked the pediatric oncologist, a well-known expert on Emily’s type of relapse, if the drug was the best option for her. The doctor said yes, but, “something just didn’t seem right about putting her in that trial,” Kari said. “Something told us that that drug wasn’t going to be right for Emily.”
And with that, the family headed back to Hershey, where they were closer to home and felt more comfortable. Emily started another round of chemotherapy. It didn’t impact the cancer, but it also didn’t make her sick, as the others had.
After another failed attempt, the Whiteheads “kind of knew that chemo wasn’t going to work for her at all,” Kari said. On March 1, they returned to Philadelphia, deciding it was time to try an experimental treatment. Emily’s doctors agreed that Philadelphia was her best option.
The clinical trial that had been offered to them less than a month earlier was taken off the table because of the chemotherapy Emily had just received, but the Whiteheads had another trial option.
A T cell study had just opened, and Emily was eligible for it.
‘The first child’
If it hadn’t before, the reality of Emily’s situation quickly became clear.
“Our first question was, ‘how many kids anywhere in the world have received it?’ And that’s when they said none,” Tom said. Three adults had undergone the T cell treatment, with encouraging results.
Still, Kari added, “it was easier that time because we didn’t have a choice.”
The doctors explained that researchers, including the team at the University of Pennsylvania who would be working with Emily, had been striving for 30 years to find a way to force the immune system to go after cancer cells, and this trial would use Emily’s own T cells — a type of infection-killing white blood cell known as a lymphocyte — to do so.
Emily’s form of cancer is leukemia of the B cells, which are another type of lymphocyte.
For the study, Emily’s T cells would be “trained” in a laboratory to attack her cancer. Then they would be returned to her body.
Dr. Stephan Grupp, a pediatric oncologist at CHOP, led the procedure.
“We felt really comfortable, and we really trusted them and believed that the T cell study was going to work,” Kari said, “even though they told us over and over again that this is very experimental. Emily’s the first child.”
‘Make it through the night’
Emily was given her T cell injections in three stages over three days from April 17 to 19. Her doctors hoped to give her the treatment as an outpatient procedure, but on the second day of injections, she spiked a fever and was re-admitted to the hospital.
A week later, Emily was on a ventilator in the pediatric intensive care unit, unable to breathe on her own. “For a few days, Emily got very sick,” Grupp said.
The night of April 24, Emily became gravely ill, and her doctors told the Whiteheads to be prepared for the worst, giving Emily a 1 in 1,000 chance of making it through the night, Tom said.
“They told us her kidneys were starting to fail and her lungs, of course, weren’t working, and so they came to us and said, ‘we don’t think she’s going to make it through the night,’ ” Kari said.
Her doctors gave Emily steroids, which in the previous study had hindered the function of the T cells, but could potentially save her life. “We had been told going up to that point that if the T cells ever got out of control, they would give her steroids to kill them because it killed them in one of the adults,” Tom said.
Meanwhile, Powell, who had made himself constantly available to the Whiteheads and had become a strong part of their support system, was nervously waiting back in State College.
“That decision went back and forth between the doctors at (CHOP). Her father was calling me as well, and they decided to go ahead and do it,” Powell said. “She slowly started getting better, but in the back of everyone’s mind was ... the leukemia was probably going to come back.”
Emily pulled through that night and continued to improve day by day. And her T cells had survived.
A week later, blood work showed the disappearance of the cancerous B cells, but Emily’s doctors cautioned that nothing could be certain until other tests were performed.
On May 10, a CT scan showed that the cancer was gone, raising hopes that the T cells had done their job. But Emily was still waiting on one more test — the Minimal Residual Disease report, the final test for leukemia. Powell said the MRD test can look for one leukemia cell in a billion cells or more.
On May 13, Emily was transferred out of the pediatric intensive care unit to the oncology floor. The next day, the MRD report was returned, indicating Emily was cancer-free.
Although she doesn’t fully realize the impact her battle could have on future cancer patients, Emily has taken it all in stride. “When she first woke up, I gave her a day or so and then I said, ‘Emily, you realize now the treatment you did, you’re the first in the world, and now you’re cancer-free’ and she just went, ‘Yeah, that’s what I do,’ ” Tom said.
Beginning to heal
When Emily made it through her worst night, her doctors described the recovery process as a marathon. She still has a long way to go, but, for now, her treatment for cancer is over.
“We’re hoping she doesn’t have to have treatment ever again, and if so, it’s huge,” Kari said. “This treatment is really big.” She’ll be tested in about a month to see if her T cells are still there and if they’ve kept her cancer away, but little signs are indicating things should run smoothly.
According to Tom, Emily’s doctors have said that, in adults, the treatment still works. When blood samples are taken from the adults and active cancer is added to it in a lab, the T cells within the blood still kills the cancer. It’s been done in mice, too, he said. Now, the family is in the final stretch, and Emily is eager to return home.
“We can’t describe how happy and relieved we are,” Kari said. “But she has a lot of healing to do, too, and it’s going to take her a little while, so it’s been tough. Now that her cancer is gone, we just want to be out of the hospital, and let her play and just be normal again for awhile.”
Keeping the faith
The words “I believe” have become synonymous online with Emily and her journey. “That was Tom,” Kari said, adding that he’s always had the glass-half-full outlook.
“Since the beginning, inside me, I knew that she was going to make it through this,” Tom said. “It’s kind of hard to explain, but I said I’ve believed all along that the end result of this is going to be there’s greater things for her in life and this isn’t going to define her. ... It just seemed like something was always guiding us in the right direction to make the right decisions at the right time, and I just kept telling Kari, ‘I believe.’ ”
Even through the toughest decisions, Emily’s parents have kept their eyes on the goal. “We pick each other up whenever we need to,” Tom said. “Part of our thought process is … we have to support her the whole way and fight through this and win this battle because a bad outcome means we’re not even parents anymore.”
“Her parents are extraordinary … they really get it in terms of what’s at stake,” Grupp said. “I just really admire them.”
‘Support from so many’
Since Emily’s diagnosis, the Whiteheads have seen an outpouring of community support from their hometown of Philipsburg, including bake sales, a benefit haunted house and an alumni P-O softball game. Co-workers at First Energy and Penn State have donated their vacation time to Tom and Kari, respectively, to allow them to stay in the hospital with Emily.
“The money donations have really helped us, but the support from so many people all over, it’s just hard to explain. That means more than anything, to keep us going,” Tom said. “They bring in shopping carts full of mail to Emily, and she just lights up and smiles.”
And the support system has quickly spread, first over the mountain to Penn State students through Thon, then nationally through a Facebook page Kari set up to keep supporters up to date on Emily’s progress.
“We just wanted more people to be praying for Emily,” Kari said. “She really just needed a lot of prayers to get through what she needed to get through.”
Today, the page has more than 15,000 “likes.”
In the past few months, the Whiteheads have also added many new members to their extended family.
Angela Mancuso, a member of the Penn State chapter of the Public Relations Society of America, the organization paired with the Whiteheads through Thon, said she started visiting the family in Hershey in October when visiting her grandmother in the same hospital.
In February, she danced for 46 nonstop hours at Thon in Emily’s honor. At one point, she texted Tom and Kari to say, “the next time Emily cries, it’s going to be over a boy ... and we’re going to beat him up.”
Mancuso was with the Whiteheads the night they almost lost Emily.
And she was there the day they got the long-awaited good news that she was cancer-free.
“I’ve never been so excited to want to beat up a boy for Emily,” she said.
Heather Hottle can be reached at 231-4636.