Childhood Leukemia
Who Gets ALL?
Approximately 3,100 children and teens are diagnosed with ALL in the United States each year. It is most commonly diagnosed in children ages 2 to 5. Hispanic children have the greatest risk of developing ALL, followed by white children, then black children. More boys than girls are diagnosed with ALL. Known risk factors include:
- Being exposed to x-rays before birth.
- Prior treatment with radiation (e.g., for an enlarged thymus).
- Being exposed to industrial chemicals such as arsenic or benzene (although few children who develop ALL were exposed to these types of chemicals).
- Having an identical twin with ALL. If one identical twin develops ALL, the risk of the other twin also developing ALL is around 25%. This is because leukemia cells are shared during fetal development (when identical twins are still inside the mother’s womb). The likelihood that both identical twins develop leukemia is highest in infants. After age 7, there is no increased risk of the second twin developing the disease.
- Having a genetic condition such as Down syndrome, neurofibromatosis 1, Bloom syndrome, Fanconi anemia, ataxia-telangiectasia, Li-Fraumeni syndrome, or mutations in genes that keep DNA from repairing itself, which can cause cancers at an early age.
Two-year-old Levi has Down syndrome. He started being a little fussy and wasn’t sleeping well. We thought that maybe he was getting an ear infection. But within a few days, his eye was swollen; he looked like “Rocky.” Thankfully, Levi has the best pediatrician ever! He could not really figure out why Levi’s eye would be swollen but since Levi has Down syndrome, he wanted to do a blood test just to see if everything looked okay. Levi’s counts were low so they re-checked in less than a week. When those counts were still low, his pediatrician sent us to the hematology clinic at our local children’s hospital where they did a bone marrow test. When his ALL was confirmed, they immediately admitted Levi to the pediatric cancer floor to begin treatment.
Parents often search for reasons, and blame themselves, for their child’s ALL. It is important to know that you did not cause and could not have prevented your child’s illness.
My 17-year-old son and I were discussing what might have caused his ALL. I said that I had come to this conclusion: I don’t have the time or mental energy to dwell on the causes. They are not important. They drain my energy and are irrelevant. Sam stated, “Right, it’s kind of like a computer.” I replied, “Huh?” He said, “Sometimes you know that something you do will crash the computer. But sometimes, it’s something that you just can’t predict, there are many factors involved and they come together to cause a crash. Sometimes you are doing the same things at another time and the computer doesn’t crash. You don’t try to figure out what you have done wrong. You just re-boot the computer.” So I say, “Yeah, that’s what we are doing: re-booting you.” And he agrees, chuckling, “But it takes a bit longer to re-boot a person!”
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. Overview of Childhood Leukemia
- 3. Acute Lymphoblastic Leukemia
- 4. Acute Myeloid Leukemia
- 5. Juvenile Myelomonocytic Leukemia
- 6. Chronic Myelogenous Leukemia
- 7. Telling Your Child and Others
- 8. Choosing a Treatment
- 9. Coping with Procedures
- 10. Forming a Partnership with the Medical Team
- 11. Hospitalization
- 12. Central Venous Catheters
- 13. Chemotherapy and Other Medications
- 14. Common Side Effects of Treatment
- 15. Radiation Therapy
- 16. Stem Cell Transplantation
- 17. Siblings
- 18. Family and Friends
- 19. Communication and Behavior
- 20. School
- 21. Sources of Support
- 22. Nutrition
- 23. Insurance, Record-keeping, and Financial Assistance
- 24. End of Treatment and Beyond
- 25. Relapse
- 26. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups