Conditions

Relapsed Acute Lymphoblastic Leukemia

What is relapsed acute lymphoblastic leukemia (ALL)?

Most children with acute lymphoblastic leukemia (ALL) are cured with standard treatments. But about 15% of children have ALL that:

  • Comes back after treatment (called relapsed or recurrent)
  • Does not respond to the first treatment (refractory)
  • Has features that make it harder to treat (high risk)

If this is the case for your child, they will need a different approach to treatment. The pediatric experts in our High-Risk Leukemia Program leave no stone unturned to improve survival and quality of life for children with the toughest cases of ALL.

Relapsed and High-Risk ALL at Seattle Children’s

USNWR Badge From first visit to follow-up, experts in high-risk leukemia research, next-generation diagnostics and precision medicine will work as a team to give your child seamless care. This close collaboration by experts in many specialties – including stem cell transplants – sets us apart from other academic medical centers.

The High-Risk Leukemia Program is part of our Cancer and Blood Disorders Center. If you would like an appointment, ask your child’s doctor to refer you. If you have a referral or would like a second opinion, contact the center at 206-987-2106 or by email. We will assess your child, diagnose their specific form of ALL and advise you on the best treatment options for their unique needs.

“It was really hard to imagine that a cancer which had plagued Greta for so long, and made her chances of survival so incredibly low, was going to be eliminated by her own immune system in a matter of days. But that’s exactly what happened.” – Maggie Oberhofer, mom of Greta, who has been cancer-free since getting immunotherapy at Seattle Children’s.

    • The children we treat for ALL have better outcomes than the national average.
    • U.S. News & World Report consistently ranks our Cancer and Blood Disorders Center among the best in the United States. Seattle Children’s also ranks as the top children’s hospital in the Northwest and among the nation’s best.
    • Through our partnership in the Seattle Cancer Care Alliance (SCCA), our patients benefit from the work of physician-scientists at Fred Hutch and UW Medicine, as well as at Seattle Children’s. The National Cancer Institute has named our partnership a comprehensive cancer center.
    • In addition to standard diagnostics, our team uses state-of-the-art tests like molecular profiling and next-generation sequencing (NGS). We examine your child's cancer cells for certain proteins that can serve as targets for treatment and starting points for the design of new drugs.
    • These tests help us find what is different about your child’s leukemia and identify the best treatment options for them. Whenever possible, we use results from NGS to match your child with therapies that target their specific cancer. This approach is called precision (or personalized) medicine. These therapies could be medicines already approved for another disease or clinical trials of new treatments.
    • In addition to targeted therapies, we offer advanced treatment options such as new mixes of chemotherapy, immunotherapy, radiation therapy and stem cell transplants.
    • Our physician-scientists are world leaders in improving care and cure rates for leukemia.
    • The High-Risk Leukemia Program will coordinate all aspects of your child’s care. Meet our High-Risk Leukemia team.
    • You will have a single point of contact who will communicate among all members of your child’s team – including you.
    • To create a custom treatment plan for your child, our whole team will discuss your child’s case in detail. Such close collaboration by experts in many different specialties sets us apart. This plan guides your child’s care through all phases of their treatment and follow-up care.
    • Your child will have comprehensive visits with our High-Risk Leukemia team at key milestones. They will see a pediatric oncologist, transplant doctor, advanced practice provider (APP), nurse coordinator, pharmacist, social worker and child life specialist.
    • We care for your whole child. We don’t just treat their disease. As needed, your child will receive care from specialists in nutrition, pain management, pharmacy, palliative care, physical therapy and emotional health. Read more about the supportive care we offer.
    • We know that teens and young adults with cancer have different challenges than young children. Our Adolescent and Young Adult Cancer Program focuses on their needs, which may include fertility preservation.
    • For most children with relapsed or refractory ALL, treatment includes a stem cell transplant to replace their body's system for making blood cells and introduce a new immune system. This reduces the risk of leukemia relapse. Our team will work with your family through the whole process — preparing for transplant, doing the transplant here at Seattle Children’s and caring for your child as they recover.
    • We work closely with Fred Hutch, whose doctors pioneered this lifesaving procedure 40 years ago. The Hutch is one of the busiest transplant centers in the world.
    • Marie Bleakley co-director of our High-Risk Leukemia Program, runs a research lab at Fred Hutch and leads a phase 1 clinical trial of T-cell therapy for patients with acute leukemia that persists after a donor stem cell transplant. She also leads a national clinical trial of a new way to transplant stem cells in youth with leukemia, pioneered by her team.
    • Learning that your child’s ALL is high-risk or has relapsed can be scary. We help take positive steps right away by offering appointments in 1 to 3 days to children suspected to have cancer.
    • During visits, we help you fully understand your treatment options and make the choices that are right for your family.
    • Our intake coordinators, nurse coordinators, child life specialists and social workers are here for your family throughout your child’s care. We connect you to community resources and support groups.
    • We work with children and families from around the Northwest and beyond. Whether you live nearby or far away, we can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.

Symptoms of Relapsed or Refractory ALL

Doctors may find signs of relapse during a routine physical exam or follow-up tests like blood counts. If your child’s ALL comes back or resists treatment, they may have the same symptoms as when their ALL was first diagnosed. Many symptoms happen because cancer cells crowd out healthy blood cells or build up in the lymph nodes or organs.

Check with a doctor if your child has:

  • Fever
  • Easy bruising or bleeding, even from small injuries
  • Weakness, tiredness or feeling dizzy
  • Pinpoint spots of blood under the skin caused by tiny broken blood vessels
  • Bone or joint pain
  • Painless lumps in the neck, underarm, stomach, groin and around the eyes
  • Pain and fullness under the ribs
  • Loss of appetite
  • Shortness of breath or coughing
  • Headaches or problems with vision, balance or muscle control

Diagnosing Relapsed or Refractory ALL

To find out if your child’s ALL has relapsed or is not responding to treatment, their doctor will:

  • Do an exam to check your child’s general health
  • Ask about your child’s health and family health history
  • Test your child’s blood to tell if any blood cells are unhealthy
  • Do a bone marrow aspiration or biopsy

We use next-generation sequencing to find what’s different about your child’s ALL and treat it with precision medicine whenever possible. Doctors will do other blood tests to learn more about the unhealthy cells and help tell which subtype of leukemia your child has. These tests:

  • Look for proteins on the surface of the cancer cells
  • Look at the chromosomes in the cancer cells

To tell if ALL cells have started to collect in other areas of the body, we use these tests:

  • Lumbar puncture
  • Biopsy
  • Chest X-ray

Treating Relapsed or Refractory ALL

We work with you to cure your child’s disease, treat problems caused by low levels of healthy blood cells, prevent and treat serious side effects, support your family during treatment and provide follow-up care.

If your child’s ALL resists standard treatment or relapses, we customize treatment based on:

  • What we learned about your child’s ALL from diagnostic testing
  • How their ALL responds to treatment
  • Side effects from past treatment
  • How soon ALL relapsed after first treatment

We also take into account:

  • Your child’s age
  • White blood cell count
  • Whether it affects T cells or B cells
  • Features of the cancer cells, such as chromosome changes
  • Location in the body of remaining cancer cells
  • Your child’s overall health
  • Your family’s preferences

Our first goal is to get your child’s disease into remission. Once tests show no leukemia cells in their blood and bone marrow, we work to keep your child in remission.

We will use different options to treat your child’s ALL than when it was first diagnosed. Your child may receive care at our inpatient Cancer Care Unit or during daytime visits to our Outpatient Infusion clinic or Seattle Cancer Care Alliance clinic.

Treatment Options

We are experienced with all treatment options for ALL, including targeted therapies and using a child’s immune system to fight cancer (immunotherapy). We offer research studies of the newest treatments.

  • New targeted therapies have been created for some types of ALL. These new medicines target the specific genes and proteins involved in the growth and survival of cancer cells.

    Targeted therapies we offer include:

    • Tyrosine kinase inhibitors (TKIs) that stop stem cells from turning into ALL cells. TKIs are used to treat a rare type of ALL that has an abnormal chromosome (“Philadelphia chromosome”) in its cells.
    • Immune system proteins (antibodies) made in the lab to fight disease. Doctors are studying a type of antibody that binds to 2 different proteins at the same time. This brings ALL cells and immune cells together and triggers an immune system attack.

    Most often, targeted therapy is given along with chemotherapy.

  • Experts in our High-Risk Leukemia Program will work hard to find the best research study for your child’s ALL. For children with ALL that is harder to treat, these new therapies could put ALL into remission that lasts or that allows them to undergo a stem cell transplant that might cure them. Your child’s doctor will talk with you about any new options that might help your child. Then you can decide if you want to take part. It is always your choice.

    At Seattle Children’s these include:

    Learn more about cancer clinical trials at Seattle Children’s

  • To treat relapsed and refractory ALL, we use different chemotherapy than for newly diagnosed ALL. Some anticancer medicines are part of standard treatment, and others are being studied in clinical trials. Researchers are testing new mixes of medicines to find the best ones for each type of ALL.

    Our patients get chemotherapy at our hospital campus in Seattle.  As much as possible, we will treat your child at our outpatient clinic. But at times they also will need to stay overnight in our hospital’s Cancer Care Unit.

    See more about getting chemotherapy at Seattle Children’s.

  • If your child’s cancer has spread or may spread to the brain, spinal cord or testicles, your child’s doctors may suggest radiation to one of those areas. Doctors also may use radiation to prepare your child’s body for a stem cell transplant.

    Radiation uses high-energy beams to kill cancer cells. A machine outside the body delivers strong beams of X-rays. We focus beams as precisely as possible to help limit damage to healthy areas.

    Our radiation oncologist, Dr. Ralph Ermoian, helps your child’s team decide if radiation may be helpful and what type of radiation to use. We work with you and your child to protect their ability to have biological children (fertility preservation).

    Children treated for ALL at Seattle Children’s receive radiation therapy through our partner UW Medicine.

    Learn more about Seattle Children's Radiation Therapy Service.

  • For most children with refractory or relapsed ALL and for babies younger than 1 year, treatment includes a transplant of hematopoietic (him-at-oh-poy-EH-tik) stem cells. These are young cells that grow into different types of blood cells.

    Your child’s oncologist and transplant doctor will work together closely to decide:

    • How to get your child's disease in remission, including new approaches like immunotherapy
    • The best kind of transplant for your child
    • How to reduce the risk of cancer coming back

    We do the transplants here at Seattle Children's, working closely with our partner Fred Hutch. Fred Hutch is one of the largest stem cell transplant centers in the world.

    First your child will get large amounts (high doses) of chemotherapy. They may also get radiation. This kills cancer cells and makes space for the new stem cells your child will get during the transplant.

    Then your child receives stem cells through their vein. The cells have been taken from a healthy family member or other donor. These healthy cells then create new bone marrow.

    Learn more about the Pediatric Blood and Marrow Transplant Program.

  • Relapsed and refractory ALL and its treatments may cause severe symptoms and side effects for your child. Their body is less able to make blood cells needed to fight infection, make blood clot and carry oxygen around their body. This means they have a higher chance of serious infection, bleeding and other problems.

    As needed, your child will get transfusions to replace lost blood cells and antibiotics to treat or prevent infections. Expert nurses and doctors will watch your child closely. Based on how your child is doing, we adjust their treatment and supportive care.

    We provide many types of supportive care to ease your child’s symptoms and side effects. As needed, your child and family will get care from specialists in nutrition, pain management, pharmacy, palliative care and emotional health

Follow-up Care

Follow-up care is important after treatment ends. The follow-up routine will depend on your child’s type of ALL and their treatments. Your doctor will let you know the schedule that is right for your child.

During follow-up visits we check your child for:

  • Any signs that their cancer is returning
  • Effects that may happen months or years after treatment.

Our Cancer Survivor Program provides long-term follow-up care to help young people stay healthy after being treated for cancer in childhood.

Through our partnership in Seattle Cancer Care Alliance, our patients who have had a stem cell transplant get care from the SCCA’s Long-Term Follow-Up program.

Contact Us 

If you would like an appointment, ask your child’s primary care provider to refer you.

If you have a referral or would like a second opinion, contact the Cancer and Blood Disorders Center at 206-987-2106 or by email.

Providers, see how to refer a patient.

Related Links

Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.

For Healthcare Professionals