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.
The signs and symptoms of leukemia relapse can be the same telltale warnings that occurred prior to diagnosis. These are:
• Loss of appetite
• Enlarged lymph nodes in the neck or groin
• Enlarged abdomen caused by a large spleen or liver
• Changes in behavior, such as excessive irritability
Remember that many of these symptoms are also seen with normal childhood illnesses. However, persistent loss of appetite or fatigue or unusually severe symptoms should prompt a call to your oncologist.
In some cases, parents have no warning. After they bring their child in for a routine bone marrow aspiration or spinal tap, they receive a totally unexpected telephone call from the doctor with the news.
I am a long-term survivor (30 years old), who first was diagnosed with ALL at age 8 and subsequently relapsed three times, at ages 13, 15, and 16. The first relapse was by far the worst to deal with emotionally It had been five years since my diagnosis, so I went in for my last spinal tap and bone marrow. I had been off treatment with good counts for two years. My mother and I didn't even wait for the test results; we went out to lunch and went shopping. Later that day, I called the clinic, and my doctor told me the bone marrow was fine, but she needed to talk to my mother. I heard my mother say, "No, no, oh no," and she started to cry. I just stood there feeling numb, knowing the news was bad. The cancer had returned to my central nervous system. We held each other and cried.
The three most common sites for leukemia relapse are the bone marrow, the central nervous system, and the testes. Bone marrow relapse is the most common form of recurrence of leukemia. Since the use of central nervous system prophylaxis was initiated, the likelihood of CNS relapse has dramatically decreased. Currently, CNS relapse occurs in less than 10 percent of young patients. Relapse in the testicles is uncommon, occurring in less than 5 percent of boys. The primary symptom of testicular relapse is a painless, enlarged testicle. Leukemia rarely recurs at other sites, such as the ovary or eye.
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.
Jody was complaining about pain and a feeling of pressure in his leg bones. I kept bringing him back to the oncologist, saying that something was wrong, that he was in great pain, but the doctor kept insisting that it was just growing pains. He didn't even examine his legs for a month. When he did, he could feel parts of the bone radiating heat. The bone scan showed the cancer in the exact spots that Jody had pointed out.
My son relapsed in the left optic nerve, which is considered a posterior relapse. His first symptom, 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 CAT 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.
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.