Whether you, a loved one, or your child has been diagnosed with ALL (or are receiving treatment for ALL), here are five tips to guide you through this difficult time.
In the end, coping with ALL is a journey that requires resiliency from the person diagnosed, as well as tremendous, unconditional support from parents, family members, and other loved ones.
Gain Knowledge of ALL
While it can be challenging to read or discuss the specifics of an ALL diagnosis, many people ultimately find that knowledge gives them some power and control over their vulnerable situation.
If you (or your child or loved one) have been diagnosed with ALL, there are three key terms to learn about.
Bone Marrow
The bone marrow is where ALL begins. Bone marrow is the spongy tissue inside certain bones of your body that make new blood cells:
White blood cells: These cells fight infections. Red blood cells: These cells carry oxygen to the body’s tissues and remove carbon dioxide. Platelets: These are small fragments of cells (not cells themselves) that help the blood clot.
Leukemia Cells
The cancer cells (called leukemia cells) of ALL arise from immature white blood cells in the bone marrow. These leukemia cells do not function like normal white blood cells. Instead, they grow rapidly and uncontrollably, crowding out healthy white blood cells, red blood cells, and platelets. Eventually, the leukemia cells spread to the bloodstream, lymph nodes, and organs within a person’s body.
“Acute” Leukemia
“Acute” lymphoblastic leukemia means that the leukemia cells grow aggressively within the bone marrow and enter the bloodstream rapidly. This is why ALL requires treatment right away after diagnosis. Most children have a diagnosis of acute leukemia.
On the flip side, chronic leukemias usually fester for a long time before causing problems, although they can transform into “acute” leukemia at any time.
Understand Your Symptoms
Just as learning the basics of how ALL develops improves your understanding, it’s also a good idea to understand why ALL makes you feel the way you do. In other words, be sure to educate yourself on the symptoms of ALL.
Due to the crowding out of healthy cells in the bone marrow, people with ALL may develop symptoms like:
Weakness, paleness, and fatigue (from a low number of red blood cells) Fever and infections (from a low number of white blood cells) Easy bleeding (from a low number of platelets)
Leukemia that has spread to the bloodstream may also cause swollen lymph nodes as well as pain and organ-specific problems (for example, bone pain or swelling in the belly). In addition, leukemia cells can enter the fluid that bathes the brain and spinal cord, leading to headaches, seizures, or other neurological problems.
Ask Questions About Treatment
Chemotherapy is the cornerstone therapy for ALL, and yet it’s not an easy topic for many people to wrap their brains around. Chemotherapies are drugs used to kill cancer cells. In ALL, there are usually three phases of chemotherapy:
Induction Phase: Chemotherapy removes the leukemia cells from your blood. Consolidation Phase: Chemotherapy clears any remaining leukemia cells. During this phase, some people undergo a bone marrow transplant (called a stem cell transplant). Maintenance Phase: Chemotherapy is given in lower doses to prevent your ALL from returning.
Be sure to ask questions so you are clear on what to expect as you (or your child) undergo chemotherapy, like side effects (for example, pain, nausea, or hair loss) and how those will be managed. Ask hard questions too, like what happens if chemotherapy does not work.
Besides chemotherapy, there are other treatments a person diagnosed with ALL may undergo like radiation, targeted drug therapy (if you have a specific type of ALL), or a stem cell transplant. Talk with your healthcare provider about the expectations of these treatments and why they may be indicated.
Reach out to Others
Receiving a diagnosis of ALL and undergoing intensive treatment is stressful and overwhelming. This is why it’s important to reach out to others for support, whether that’s a family member, friend, support group, spiritual advisor, or counselor.
Even if you are not someone who usually shares feelings or opens up about personal worries, sorting out your fears, grievances, and anxieties can help you feel better. In fact, research suggests that emotional support and help in managing the logistics of cancer treatment tend to lessen feelings of sadness and anxiety and improve quality of life.
Watch for Symptoms of Depression
It’s normal to grieve a diagnosis of ALL, but if this sadness persists for a long time and/or affects everyday functioning, you may have depression. Besides sadness or hopelessness, other symptoms of depression include:
A loss of interest in activities once enjoyedSleeping problems (for example, waking up too early in the morning)Feeling unusually sluggish (or unusually agitated or restless)Difficulty concentratingFeeling guiltyThoughts of suicide or death
Other symptoms of depression like a loss of appetite, weakness, and fatigue may be difficult to tease out from the symptoms of ALL and/or the side effects of taking chemotherapy.
The good news is that psychologists and/or social workers on leukemia care teams can often provide adult and child interventions like mindfulness-based stress reduction and cognitive-behavioral therapy to reduce anxiety and depression.
For children, strategies to address healthy parent coping may also provide comfort and ease anxiety. This is especially critical in the months right after treatment when worry levels are high due to a number of reasons like:
Fear of relapse (ALL coming back)Loss or reduction of medical and social supportPossible posttraumatic stress from the previous months of treatment
A Word From Verywell
Being diagnosed with and undergoing treatment for ALL can be devastating, all-consuming, and downright draining, both physically and emotionally. But with knowledge, lots of question-asking, and support from loved ones you (or your child) can get through this difficult time.
Most importantly, be kind to yourself, take care of your body and soul, and know that it’s OK to ponder and discuss sensitive topics too, like your personal wishes.
In the end, it’s important to remember that your leukemia care team is there to not only treat your cancer but also to treat you as a beautiful and unique person.
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