Although relapse can happen years after treatment ends, it most commonly occurs during treatment or in the first year off treatment. In fact, most treatment centers do not consider children to be long-term survivors of leukemia until they have been off treatment for at least two years or are five years past diagnosis.

The signs and symptoms of leukemia relapse are usually some of the same telltale warnings that occurred prior to diagnosis:

• Fatigue
• Fevers
• Night sweats
• Nosebleeds
• Bruises and/or petechiae
• Pale skin
• Back, leg, or joint pain
• Loss of appetite
• Enlarged lymph nodes in the neck or groin
• Enlarged abdomen caused by a large spleen or liver
• Enlarged, painless testicle
• Changes in behavior, such as excessive irritability
• Dizziness
• Headaches

Normal childhood illnesses can cause many of these symptoms, and a tired day here or a bruise there is probably no cause for alarm. However, if your child has a persistent loss of appetite, if he is often fatigued, or if he has several symptoms, it might be wise to call the oncologist. In some cases, parents have no warning. After they bring their child in for a routine visit, they receive a totally unexpected telephone call from the doctor with the news.

My 2-year-old son was diagnosed in 2011 with B-cell ALL that was MLL positive, and he had disease in the CNS [central nervous system], which made him very high risk. He relapsed six months into maintenance. We discovered the relapse when he developed a fever and we brought him to the ER because of the fever protocol for ports. We found out that his blood had 98% blasts and bone marrow had 60% blasts. So, the leukemia was back again. They decided to have him begin the induction phase again in hopes to get into remission and then to transplant. Four months later, he had a transplant and then two months later the leukemia was back.

The three most likely sites for leukemia relapse are the bone marrow, the central nervous system (CNS), and the testes. Bone marrow relapse is the most common form of recurrence. The use of CNS prophylaxis—intrathecal medications and sometimes radiation—has greatly decreased CNS relapses. Relapse in the testicles is also uncommon, occurring in less than 5% of boys. Leukemia sometimes recurs at other sites, such as the ovaries or eyes.

Right before Stephan went to camp, he went in for his maintenance spinal tap. I got a bill from a different specialist, and when I asked the oncologist about it, he said that Stephan had a few white cells in his fluid that he wanted to get another opinion on. He assured me that everything was okay, but I just had that feeling that something was about to go wrong. At his next spinal, his count was 88 in the cerebrospinal fluid. A central nervous system relapse.

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The transplant was really hard on our son. He had miserable GVHD, multiple infections, and had to have his gall bladder removed. He missed a whole year of school. Then, right after his one-year post-transplant appointment, he relapsed in his CNS. Because he had relapsed in the CNS on front-line therapy, as soon as the headaches started, he knew he had relapsed again.

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About 22 months after my daughter, Lauren, finished treatment for high-risk B-cell ALL (protocol for children with Down syndrome) she developed a respiratory illness and had an enlarged lymph node on her neck. We went to the clinic, and her platelets were low and her liver was a bit enlarged, but nothing out of the ordinary for someone fighting a virus. We went back two weeks later, and I just knew in my heart it was back, but I prayed that we would escape it. When both her doctor and nurse practitioner came in I could tell by their faces. They found blasts in her blood. I didn’t know how to tell her, so her nurse practitioner told her while I called my husband and ex. Her nurse practitioner said my daughter was stoic until she told her that Mom is sad and is calling Daddy and Brad; that made Lauren cry. It really broke my heart.

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My son relapsed in the left optic nerve. His only symptom was some mild pain with extreme gaze (looking all the way down, up, or to the side). After a couple weeks of this, a family practice doctor looked at him and saw nothing. An optometrist saw some swelling of the optic disc (connected with the optic nerve). That sent us to an ophthalmologist, to a radiologist for a CT scan, and back to the oncologist. So, his only symptoms were some mild pain and some swelling in the back of the eye that was hard to see. Further tests of the marrow and the cerebrospinal fluid showed no leukemia cells, so we were forced to do an optic nerve sheath biopsy, which was the only place ALL cells were found.