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A Little Mouse in a Big Fight

Oncologists at Children's Hospital Central California treat rare form of leukemia

8/8/2011 

New Year’s Day bids goodbye to what was and waves hello to what will be. For the Williams family, greeting the coming year would invite an entirely unexpected adventure, which began before the sun came up Jan. 1, 2011.

Jace smiles“We’re not really into staying up late on New Year’s Eve,” said Rose Williams. “I went to bed before midnight.” Rose and her husband, Raymond Williams, live in Madera with their three children, Isaac, Ray, and Jace. Their youngest had not been feeling well in the days leading up to the holiday. In addition to his constant fever, Jace’s lethargy and loss of appetite concerned his parents. “He’s usually the biggest eater of our three boys,” said Rose of her 6-year-old.

Raymond took his son to a doctor at Kaiser Permanente Hospital early in the day on New Year’s Eve. Jace’s fever climbed to 103 degrees during the appointment. “The doctor didn’t really know what it was,” said Raymond. “And so she ordered blood tests and said we’d get a call later.” The doctor kept Jace at Kaiser until she was able to bring his fever down, and then she sent him home.

“She could’ve thought it was the flu,” said Rose of the doctor at Kaiser. “But by the grace of God she said, ‘Let’s run some labs on him.’ I don’t even want to think about what would have happened if she hadn’t done that.”

Jace took it easy all day Dec. 31. Rose rotated doses of acetaminophen and ibuprofen and gave her son cold compresses and popsicles, but the fever would not break. The family went to sleep thinking Jace had the flu and would most likely be well enough to return to school when winter break concluded at the end of the following week. However, the next few hours would bring a far more serious diagnosis.

“My sister called right at midnight to say Happy New Year and she woke me up,” said Rose. She drifted immediately back to sleep and did not realize 90 minutes had passed when the phone rang a second time. “I thought it was someone else calling to say Happy New Year,” she said. “But when I saw it was 1:30 in the morning and the caller ID said ‘Kaiser’ I knew something was wrong.”

Jace smiles for the cameraInstantly wide awake, Rose learned that her son’s hemoglobin was dangerously low. “They asked me if I could get Jace to an emergency room within 45 minutes,” she said. “As a parent, I didn’t know how to react. Should I call an ambulance?” Rose gave a sheepish grin and shrugged her shoulders. “I did call an ambulance, but my husband said we could drive.”

“His fever was going back up and I was concerned,” said Raymond. “Earlier that day he was drained. I remember him just leaning against the wall.”

Rose buckled her sleepy son into the car for the 35-minute drive from their home in Madera to Kaiser Permanente Hospital in Fresno. As soon as the motor was running, she realized her tank was empty and drove straight to a gas station. “As I stood there putting gas in my car, all I could think about was how my mom always told me not to let my car go below a quarter tank because you never know when you’ll have an emergency,” she said. “I wasted 10 minutes pumping gas.” With her tank refueled, Rose sped down the highway at around 2 a.m. on a night notorious for drunk driving. “I actually wanted to get pulled over by the sheriff so he could escort me.” She made the trip in record time. “I went straight to Kaiser ER and they were ready for him,” she said. “They took him right back.”

Jace’s fever spiked to 105.8 degrees and his hemoglobin was 3.1. The normal range for a child his age is 11.1 or higher. An adult with hemoglobin as low as Jace’s would suffer heart failure. “I was just praying to God, and praying to God,” said Rose. “I asked the doctors, ‘Did I miss something?’ but they said no.”

The sky was still black with night when Kaiser arranged for a medical transport to take Jace to Children's Hospital Central California. Rose called her husband with news of the transfer. “I knew when they were going to Children's that it was a better hospital for children,” said Raymond. “That’s what they do, they take care of kids.”

Jace with a baseball capBy 6 a.m. Rose knew her son’s diagnosis. “The emergency room doctor at Children’s was a really nice guy,” she said. “He called me out of the room and I figured it wasn’t good because he didn’t want to talk to me in front of Jace. I’ll never forget his words to me.” She fell silent for a moment. “He made me feel really confident in knowing Jace’s diagnosis. He said he’s seen this a lot and had no doubt it was leukemia.”

For a second time, Rose called her husband, who had stayed home with the other boys in the family. She gave him the heartbreaking diagnosis. “Me and the boys got up and made our way that direction,” said Raymond. “You don’t know what to think. All kinds of things are going through your head. I just prayed on it and took it slow.”

The Williamses soon met Jace’s admitting doctor, Dr. Ruetima Titapiwatanakun, also known as Dr. Ti, a pediatric hematologist/oncologist at Children's Hospital. Jace received blood and platelets right away to boost his hemoglobin. His blood was sent for flow cytometry and was consistent with leukemia. On Monday, Jan. 3 he was taken into surgery. “They placed his mediport, pulled spinal fluid, pulled bone marrow and injected chemo fluid all during that same surgery,” said Rose. “One hour in surgery and one hour in recovery – that was about all I could take.”

Jace dancesOf the types of pediatric leukemia, acute lymphoblastic leukemia (ALL) is most common. However, the results of Jace’s bone marrow test revealed a rare form of leukemia, known as mixed phenotype acute leukemia (MPAL), which meant both the lymphoid and myeloid blood cells were affected – only 4 percent of all pediatric leukemia is MPAL. “The disease is very rare, so the treatment plan is more of a challenge,” said Dr. Ti. She confronted the challenge without hesitation, and began Jace’s treatment with an intense round of chemotherapy known as “induction,” which lasted 28 days.

Jace dancesRaymond’s father, also named Raymond Williams, brought his RV to Children’s and utilized the Hospital’s free hookups located just outside the oncology wing of the Hospital. He and Jace’s brothers lived in the motorhome until school resumed the second week of January. “I was confident to know that we were close,” said Jace’s grandfather. “We could see the window where they were. It gave Isaac and Ray comfort to know their brother was right there.”

The elder Raymond’s wife passed away with cancer in 2004, and he spent his wife’s last year as her caregiver. “When I got the call from my son about Jace, it was devastating,” he said. “It was like my experience with my wife all over again. My biggest resolve was to be there for my son.” The RV stayed in the parking lot at Children’s for the remainder of winter break.

“They were in good hands,” said Rose of her two older boys. “We’re so thankful for our family.”

“It’s a scary situation for a kid,” said Raymond. “Looking through my sons’ eyes, they don’t know what’s going on. It’s a lot of chaos to them. Having family there, it was good.”

Rose’s mother and sister stepped in as well to provide invaluable assistance. “I took Isaac and Ray to the movies and would try to explain to them why their brother was in the hospital,” said Beatrice Ochoa, Jace’s grandmother.

Rose expressed gratitude for the support of her family, who eased the strain of Jace’s extended hospital stay, as well as for the nursing staff, who provided excellent care while she and her husband kept watch at the bedside of their youngest. “We had one nurse who was really, really awesome,” said Rose. “His father had passed away from adult leukemia, and that’s what got him into nursing.” While she connected most with the one particular nurse, Rose appreciated each one of them. “I think all the nurses are great,” she said. “They have such a genuine love for what they do and for these kids. You can just see it, and you see a difference from adult medicine.”

Jace gets ready to eat cakeAt the end of the induction phase, Dr. Ti obtained another bone marrow sample which was tested for minimal residual disease (MRD). “The bone marrow test at the end of the induction phase is the most important,” said Dr. Ti. The first phase of chemotherapy is designed to rid the body of abnormal white blood cells, called “blasts.” The consolidation phase of treatment follows induction and lasts a much longer period of time. Most leukemia patients begin consolidation with a negative MRD, which indicates remission. When Jace’s flow cytometry resulted in a positive MRD, Dr. Ti knew his form of leukemia would be more difficult to treat.

The positive MRD results and the challenge of treating an extremely rare disease led to only one logical decision. Dr. Ti referred the family to Stanford to meet with their bone marrow transplant team. “She said it wasn’t a matter of ‘if’ but of ‘when,’” said Rose.

Usually bone marrow is tested at the end of the induction phase and then again at the end of the third year of treatment, but Dr. Ti retested Jace’s bone marrow another six weeks into his treatment because of the unusual nature of his cancer. The test, conducted in mid-March, revealed unexpected results.

“We went to Children’s on a Tuesday and they pulled bone marrow,” said Rose. “Two days later, on Thursday, March 14th, we went to Stanford.” The Williamses learned the transplant procedure necessitated a second central line and a three-month stay at Stanford. “I thought about all Jace would have to go through and it was so much, too much,” said Rose. “But I have complete faith in God to take care of my son.”

Jace climbs treeThe family returned from Stanford discouraged and apprehensive. “Neither one of his brothers was a match for a transplant,” said Rose. “He’s on every database for a bone marrow transplant, nationally and internationally.”

Jace came to Children’s the following week for the results of his latest bone marrow test. This time, the MRD was negative. Jace was finally in remission. “Dr. Ti came in with a big smile and said that he wouldn’t have to have the transplant!” Rose grinned and shook her head. “Since he was little he’s never been typical.”

“We always weigh the risks and the benefits before making treatment decisions,” said Dr. Ti. “I explained to them that given the risks of the unrelated donor transplant – since neither of the brothers was a match – and the current negative MRD on his bone marrow, we’d continue with the current chemotherapy plan.”

 The additional bone marrow test demonstrated that while Dr. Ti’s treatment plan was taking a little longer than usual, it was working to fight Jace’s rare form of cancer. “We came back from Stanford to wait for a donor, and found out just a few days later he wouldn’t need one,” said Rose. “We were so relieved. Dr. Ti respected me to ask if I wanted to do a conference call with Stanford, but I completely trust her judgment.”

The Williams family is pleased with the care Jace has received at Children's Hospital Central California. Rose rattled off the names of four pediatric hematologists/oncologists treating her son. “Dr. Ti, Dr. Ozeran, Dr. Razzaqi and Dr. Samuel,” she said. “They’re all great.”

“Dr. Ozeran explained things to me and made sure I understood what was going on,” said Raymond. “But all the doctors are wonderful. They’re angels doing very good work for children. Hats off to them.”

Jace eats a meal“I was very impressed with the Hospital and was very pleased we had an opportunity to get treatment there,” said the Jace’s grandfather, Raymond. “I don’t know what we would’ve done without the Hospital there.”

“I feel blessed that we moved to Madera when we did,” said Rose, recalling the move she and her husband and their three kids made from their hometown of Hanford. “It was hard to pull away from family, but it’s so nice being this close to the Hospital.”

Providence provided another blessing with the Williamses’ move. Rose struggled with leaving a job she loved in Hanford – working with autistic children – and getting a good job in Madera. She found employment at a residential care facility, and received training to become direct care staff, which involved acquiring certification to give medications. “The training prepared me for dealing with Jace’s medications,” said Rose. She recounted the time she went to a local pharmacy to pick up Jace’s prescription, and noticed they made an error regarding the dosage. “He was supposed to take 10 mls not six,” she said. “If it weren’t for my job, I wouldn’t have known the difference.”

Rose learned that caring for Jace involved more than administering correct doses of medication. “Dr. Ozeran told me from the first day, ‘Do not create a monster,’ but it was hard not to give in and give him what he wanted,” she said. “I wish I would’ve listened. I totally agree with Dr. Ozeran now! Jace is worse than Veruca Salt from Charlie and the Chocolate Factory with his ‘I want it now’ cries in a high-pitched voice.” She laughed at her own exaggeration and shook her head. She looked with love at her son napping on the couch and sighed. “Now I have to undo the damage that’s already been done.”

Rose’s mother confessed the challenge of not spoiling her grandson. “He’ll say, ‘Grandma are you gonna go buy me a Happy Meal?’ and I do,” said Ochoa. “My love for him is so much it just hurts.”

Jace with friendsAs Jace progressed through the consolidation phase, he no longer received the majority of his treatment on an inpatient basis. Instead, he made weekly visits to the outpatient Craycroft Cancer Center. Dr Ti truly enjoys taking care of her inpatients and outpatients. Kids like Jace sense her concern and respond to her warmth and compassion. She admits the high acuity of her inpatient cases can be challenging, and is much happier treating children at the Craycroft Cancer Center. “I prefer seeing them in the clinic because their health is so much better,” said Dr. Ti.

Jace’s health has improved greatly and Dr Ti is hopeful he will remain in remission. She enjoys practicing pediatric oncology because the prognosis is much better for little leukemia patients than with adult cancers. While cancer in adults can be caused by environmental issues, such as smoking and diet, cancer in children is different.  “The cause of leukemia is unknown,” said Dr. Ti. “But it’s more likely biological and not environmental in nature.”

“I don’t think Jace wants people feeling sorry for him and I don’t think he feels sorry for himself,” said Ochoa. “Quite the opposite. He wants to do everything.” Her voice held pride for her little grandson’s fortitude in his fight with cancer. “Jace is an all around boy. Even with his sickness he’s quite an active little boy,” she said. “I call him my little mouse because he’s fast. Before you know it he’ll be around you and out the door. That’s why I call him my little mouse.”

Jace will finish his weekly treatments in August and move into the maintenance phase of his chemotherapy. “We’re so excited,” said Rose. “He’s doing really well.” Jace will continue receiving monthly treatments at the clinic for approximately two years.

“Jace’s health is almost a 180-degree turnaround,” said Raymond. “He keeps up with his brothers. He’s right there on their shirttails, not missing a beat. The doctors say it’s very therapeutic for him to keep up with them and be so active. It’s doing wonders in his healing process. If you didn’t know what he was going through, you wouldn’t be able to tell.”

Rose credits more than her youngest son’s energy level for his improved health. “Definitely prayer and faith are our biggest advantage and our strongest confidence,” she said.

“Going through something like this puts everything in perspective,” said Raymond. “You tend not to take the small, irrelevant things to heart. But this opens your eyes a lot to life and how precious it is. Enjoy it. Enjoy every minute of it.”

“It doesn’t matter what you drive. It’s who you love that matters,” said Rose. And because she loves her family, her gas gauge never drops below a quarter tank.