Picture this: You're sitting in the doctor's office with your loved one who has Down syndrome (DS). The last several months – or years – of fighting leukemia has taken a toll on you. Somehow, you find the strength in your child and your support system to keep going. Then the doctor gives the words you've been waiting so long to hear: the cancer is in remission.
Finally.
"The tests have shown no signs of leukemia cells in the blood or bone marrow," the doctor smiles. "The blood cell counts have returned to normal."
The Link Between Down Syndrome and Leukemia
Your mind goes back to the time when your child was first diagnosed with leukemia. You had spent hours poring over information online about the link between DS and leukemia. You found that although people with DS have an increased risk for acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL), there is no specific leukemia treatment protocol for DS patients.
Sometimes, this results in DS patients receiving lower drug dosages than standard leukemia treatments, which may prolong treatment and recovery. With their unique medical challenges, patients with DS would benefit from leukemia treatment protocols specifically tailored to them.
Monitoring the Effects of Treatment After Remission
But you're one step ahead now because the cancer is in remission. Your tired face breaks into a smile, and you snap back to the present.
What now?
"After remission, survivors may experience long-term or late side effects of their treatment," the doctor says. "It's important to keep up with the follow-up appointments so we can keep monitoring your child's health."
Long-Term vs Late Effects of Treatment
Treatment's long-term and late effects depend on the person's age, gender, and overall health. They are also affected by the type and duration of therapy.
Long-term effects are problems that persist long after the treatment is completed, such as fatigue.
Late effects are problems that happen years after the treatment is finished, like heart disease.
Learning, Physical, and Psychological Changes
Another way to classify the effects of treatment is to recognize cognitive, physical, and psychological changes. Early intervention and a healthy lifestyle may help mitigate the occurrence and severity of these effects.
Cognitive: Brain cells grow quickly, especially during the first years of life, making them easily affected by radiation and chemotherapy. This disruption may impact brain development, causing learning difficulties with math, reading, spelling, and spatial relationships. Problems with problem-solving, information processing, concentration, and fine motor skills like handwriting may also be difficulties. Other treatment effects may include headaches, seizures, and problems with the pituitary gland, which controls hormones in the body.
Physical: Leukemia survivors with DS are at an increased risk of cataracts and hearing loss, although a 2021 study suggests that this may be more related to DS than leukemia treatment. Other effects depend on the type of treatment received. For example, bones and muscles are sensitive to radiation during growth spurt periods. This may cause growth delays, bone pain, weak bones, and joint stiffness. Teeth may also be affected, causing small teeth, abnormal enamels, and an increased risk of cavities. Other effects include thyroid problems, irregular heart rhythms, increased risk of infections, infertility, and secondary cancers.
Psychological: Dealing with leukemia is a difficult journey. Although most survivors remain psychologically healthy, some report changes in mood, feelings, or behavior, which may include depression or post-traumatic stress disorder (PTSD).
The doctor continues to explain the importance of recording your child's physical and emotional symptoms and cautions you to reach out if you need help. Even if your child looks well, it is crucial to keep coming to follow-up appointments to monitor for treatment effects and start interventions early if required.
By the end of the visit, your thoughts are spinning with the information you have just received, and you wonder what the future holds. But one gaze at your child makes everything come to a halt.
We can do this. We've come this far. We have resources, we have support, and we will get through it together.
With a surge of energy, you gather your things, hold your child's hand, and open the door, determined to tackle the next challenge. Together.
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