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Patient Testimonials

Stephanie: Lymphoblastic Leukemia

Growing up, Stephanie was one of those children who never got sick.

Stephanie's story

Stephanie: Lymphoblastic Leukemia

StephanieGrowing up, Stephanie was one of those children who never got sick. She almost never missed a day of school. So at 30 years of age, even though she was feeling fine and was working out at the gym on a regular basis, she was worried when she began feeling lumps on her neck. She went to her doctor who told her she was also concerned; her doctor suggested some X-rays.

The X-rays showed that the lumps on her throat weren’t the only lumps on her body. Lumps were also discovered under her arm, possibly suggesting lymphoma. A biopsy was needed to be sure.

In between the time of the biopsy and the time when the results were scheduled to come back, things took a turn for the worse. As Stephanie put it, “It was strange, but it all just happened to come together in-sync at the very same time.” Within a week of the biopsy, she lost 10 pounds in just three days, found herself sweating all the time and had developed a high fever.

She returned to her family doctor for help, and it was there she was told that she needed to check herself into the hospital because the tests had come back and it was indeed cancer.

Since the biopsy had detected the cancer in her lymph nodes, the assumption was that it was lymphoma. Her doctor referred her to Dr. Al-Katib, a world-renowned lymphoma specialist. He visited Stephanie during her first day in the hospital and, after a full examination, decided that he wanted a bone marrow test to be sure.

His hunch was right. While Stephanie’s cancer had behaved like lymphoma, it was instead acute lymphoblastic leukemia. While she had never met Dr. Al-Katib before that day in the hospital, Stephanie said she never felt a need for a second opinion, because she new “immediately” he was the doctor for her. Only later, after her parents did a little research, did she come to find out that this doctor, who, as she says, “was treating me like his daughter,” was actually the doctor who doctors themselves want to go to when they have cancer. He’s that good.

It’s a style of treatment that Dr. Al-Katib is known for. “When I see a patient, I immediately picture them as if that patient were me, or any of my family, and I ask myself how I would want myself, or my family, treated. When I drive home every evening, I think about how that patient could have been my wife, or could have been my mother, or could have been me.”

Stephanie and Dr. Al-KatibDiagnosed on a Wednesday, Stephanie began her treatments that Friday, and she never looked back. As she puts it, “The results were almost instantaneous.” It was chemotherapy first, and then radiation treatments, but it was just a matter of months before Dr. Al-Katib happily told Stephanie she was officially “in remission.”

A few months still remain in her treatment schedule, but all signs point to the fact that Stephanie, along with the help of Dr. Al-Katib, has beaten her leukemia and that her faith in his skills were well placed. “From the moment I met him, when I was diagnosed in the hospital, I really felt like he wanted the best for me and that he wanted me cured so I could go on and live my life.”

Beth: Ovarian Cancer

Beth’s history with St. John Health goes back a little further than most of the patients that the doctors of St. John treat.

Beth's story

Beth: Ovarian Cancer

BethBeth’s history with St. John Health goes back a little further than most of the patients that the doctors of St. John treat. That’s because Beth is actually an OB/GYN nurse practitioner for St. John Health. So she has a little more insight on some things than your average patient.

Because of some symptoms that Beth was suffering, she initially thought that she may have developed colon cancer. So she went to her doctor who recommended that she get a colonoscopy. Other than that, it was just your normal office visit, but her doctor did a Pap smear that came back just a little unusual. When her doctor suggested a closer look, Beth with her medical background asked if maybe they could do an ultrasound.

It was the ultrasound that found the mass on Beth’s ovary, and she was diagnosed with ovarian cancer in the summer of 2000. It was stage 1A ovarian cancer, which means that it was the earliest stage possible. Beth had surgery to remove the mass, but because the cancer was stage 1A, her oncologist, Dr. Morris, did not suggest that she go through any type of chemotherapy treatments because no scientific evidence exists that chemo at this stage is effective, and it was potentially toxic.

So instead the plan was to perform occasional scans and watch for any sign of the cancer reoccurring. Unfortunately, three years later that’s what happened. Beth had surgery again and began chemotherapy. The chemo treatments lasted for 15 months, but then just six months after that, as Beth puts it, “I could tell the cancer was back again.”

At that point, it was radiation in 2005, which was what Beth called really “just a Band-Aid.” The cancer returned in 2006, for which Beth once again was treated with chemotherapy, and then it was chemo again in 2008.

As someone with medical experience, Beth knows that she’s beat the odds when it comes to ovarian cancer. On top of that, however, she’ll add that she doesn’t plan to go anywhere any time soon. When asked why, she’d tell you, “I’ve got some goals. Like some grandchildren I need to see in school.“

When asked to describe her oncologist, Dr. Morris, Beth is quick to say, “Oh my God, he’s the most wonderful man in the whole world. I wouldn’t be where I am right now if it weren’t for him.” Although the 600-pound gorilla in the room when they meet is her cancer, she says they still “just joke and laugh and kid.”

And as for St. John, she refers to it as almost being like her “home.” “I know the people who work in radiology, the people who do my CAT scans, the people in the lab who are always drawing my blood. They really are my family. It’s a very comfortable place and a very comforting place. In short, I’ve received the best possible care in the whole world.”

Zoe: Neuroblastoma

“Zoe was the kind of daughter who I could have had 10 more just like her.”

Zoe's story

Zoe: Neuroblastoma

Zoe and her mother“Zoe was the kind of daughter who I could have had 10 more just like her.” This is how Zoe’s mother, Danielle, refers to her. “Pregnancy was great, delivery was easy, and she rarely if ever got sick.” But that all changed when Zoe was about 11 months old.

“She was crying all the time. She wasn’t going down for her naps like she usually did, and then things really came to a head on Thanksgiving Day.” At 14 months, Zoe just stopped walking. She even stopped crawling and simply wanted to be held all the time. “Obviously something bad had happened here, and we needed to know what was going on.”

Their pediatrician thought that it might be a bone infection, so he sent them to the pediatrics department of St. John Hospital for further testing. Blood work and a scan were ordered. Before the scan , Danielle had told the nurses that she had noticed something strange around Zoe’s eyes. It looked like small bumps. “She looked different. Something was funny.” So, while Zoe was sedated, instead of just scanning her legs, they decided to scan her entire body.

“I didn’t think she had anything more than a bone infection. They were going to give her antibiotics, and we could go home.” Only Zoe didn’t go home for another 24 days.

The scan showed something a lot more serious than a bone infection. There was a tumor in her abdomen. As a matter of fact, the bumps around Zoe’s eyes were evidence of the cancer spreading and growing right before them.

Tests showed Zoe had neuroblastoma—a form of childhood cancer that affects the nervous system. She had a tumor on her adrenal gland that was 8 centimeters across; the cancer had also spread to the bone marrow in her legs and the orbital bones around her eyes. Danielle simply asked, “What do we have to do to stop it and make her better?”

St. John belongs to the Children’s Oncology Group, which has developed protocols for children with cancer. In Zoe’s case, more tests were needed to know exactly what protocol was appropriate. After the results came back, her medical team decided that they would go with the higher risk protocol. A catheter was placed in Zoe’s chest, and chemotherapy was started.

After five rounds of chemotherapy, surgery to remove the tumor and a final round of chemo, it was then time for her stem cell transplant therapy, which kept her in the hospital for an entire month. After she returned home, she had 12 rounds of radiation treatments and then six months of antibody treatment.

During that time, Danielle says, “There are a lot of difficult things that most people don’t see and you don’t necessarily share or talk about too much, but those are just the things you have to go through.” Like the time the two of them had to shave off Zoe’s hair because it was falling out due to the radiation and was getting in her food and all over the place. A lot of tears were shed that day.

Zoe’s parents tried to keep her trips to the hospital as positive as possible so they referred to them as “going to see our friends.” And they would name off people who Zoe had made a positive connection with the last time she was in for treatment. One of those “friends” that stood out for Zoe was her nurse, “Miss Rose” who Danielle refers to as being “just wonderful.”

St. John is also committed to making visits as painless as possible. As Nurse Rose puts it, “We want the kids not to feel any pain during their procedures so we have a pediatric intensivist come to the office to provide conscious sedation. That way they don’t feel any pain, and they’re not going to remember the procedure. ” The Meade Pediatric Oncology Center, located at the Van Elslander Cancer Center offers a child-friendly atmosphere and tries to perform as many procedures as possible on an outpatient basis, with the goal of getting the kids back to being kids as quickly as possible.

While the bulk of Zoe’s treatments have ended, she still goes back every six months for scans to make sure the cancer hasn’t returned. While neuroblastoma is one of the more aggressive and dangerous cancers a child can get, right now Zoe is cancer free.

She had a little scare a while back when she complained of leg pains, but after some scans, the doctors concluded that it was just normal growing pains. As Danielle puts it with a laugh, “She does have some normal childhood ailments, too.”

And let’s hope that’s all she has to deal with from now on.

Sharon: Lung Cancer

Sharon admits that she had been having breathing problems for quite awhile before she went to a doctor.

Sharon's story

Sharon: Lung Cancer

Sharon ZiembaSharon admits that she had been having breathing problems for quite awhile before she went to a doctor. She’ll also tell you that until the day she went she had also been a heavy smoker —for 45 years. But then, she had come from a family that just didn’t go to their doctors all that often. She had been healthy for most of her life, and her mom had lived to be 88.

But things were different that July day. She really was having a great deal of trouble breathing and asked her husband to pick her up from work so that she could go to his cardiologist. She thought about going to the emergency room, but this was the one doctor who Sharon felt she could really trust.

At the cardiologist’s office she was given a stress test, and the test itself actually made Sharon very ill. So she was asked to come back the next morning for more tests, including an echocardiogram. That test revealed that Sharon’s pericardium (the sac that surrounds her heart) was filled with fluid. So she was sent immediately to St. John Hospital and admitted to the Intensive Care Unit (ICU).

There they performed several more tests, including an X-ray that showed she had lung cancer. An entire team of physicians was immediately assigned to treat her. The team included a surgeon, a medical oncologist and a radiation oncologist. She spent the next 10 to 12 days at the hospital being treated for the fluid in her heart and lungs. She also had a port installed so that once the fluid was drained, she could begin her chemotherapy treatments.

Sharon was told by her oncologist, Dr. Rajendra Manam, that because of her stage of cancer she would not be able to receive radiation or surgery to treat the tumor. The cancer cells were in the fluid in her lung so only chemotherapy could be used. Doctor Manam had some good news for her, however. He told her that because she was in otherwise excellent health, she was eligible to be part of a clinical trial for a new kind of cancer drug.

Sharon did very well in the clinical trial, which lasted six months. However, when the drug dosage was reduced to a maintenance level, the tumor started growing back. So Dr. Manam switched her to a new kind of drug—a drug that wasn’t even available just three years before. But luckily for Sharon, now that the drug is on the market, her tumor is once again under control. The new drug is also less toxic than many other drugs used in chemotherapy, so Sharon can continue to take it as her maintenance drug and the side effects are minimal.

When asked about Dr. Manam and the ICU team that treated her, the praise flows freely. “He’s the greatest” she insists. “I put all my trust in him. He doesn’t sugarcoat it; he just tells it like it is. I just feel very confident and very safe with him. He’s such a wonderful, wonderful person.”


     

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