A Leukemia Diagnosis

How much information is too much when it comes to telling my child about their leukemia diagnosis?

First, I want to acknowledge that this type of conversation is one of the hardest you may have as a parent.  I say this because there is no real blueprint for it.  And when your child is diagnosed with leukemia, your routine and family life is turned upside down for months or even years.   Unfortunately, the truth is, it's life changing, so I imagine a mix of emotions are being felt at this time.

Every parent usually reaches a point where they have difficulty wrapping their head around the reality of the situation.  That is normal.  That is expected.  And that is why you have a healthcare team dedicated to help you through this complex medical journey.    

Since there can be so many feelings felt when you first learn of your child’s leukemia diagnosis, it’s important to not shy away from showing these feelings when talking to your child.  You want to relay to your child that having big emotions is appropriate.  Sure enough, they will be experiencing big emotions as they better understand their diagnosis and start treatment.  

Before initiating the conversation, consider what the medical team has discussed with you and what the next few weeks will look like.  It’s important to be concise and concrete with your child about what is required of them.  Furthermore, a timeline of events is crucial because it can promote a sense of stability rather than chaos for your child. 

Defining Leukemia 

I like to first focus on the type of sickness that leukemia is.  No matter what age or developmental stage your child is at, it is important to discuss the basics of a leukemia diagnosis-that it is a cancer of the blood and that our white blood cells are at the root of it.  For younger children, it’s helpful to use visuals to show what white blood cells are and their “job” within the body.  I have done countless leukemia teachings over the years with different age groups so please contact me directly to learn more about education.

Next, you want to connect your child’s symptoms to the diagnosis.  If your child was feeling tired, presenting with abnormal bruising, etc.,  note how those things prompted you to want to take them to the doctor.  Then, as most of us know, children typically recall their blood draw experiences like they happened yesterday.  So, you can connect their experience with how this led to their doctor confirming a leukemia diagnosis.

Planning Ahead

From there, you really want to be mindful of the amount of information you are sharing.  It’s more pertinent for a child or teenager to know the plan for the next few days and week than “we’re going to get through this.”  You want to emphasize that the plan their doctors’ came up with will help them to feel better while noting how leukemia treatment greatly differs from other types of sickness (i.e. cold or flu). I say this because a child’s perception of “being sick” is often related to cold-like symptoms, with treatment being short and basic.  So, focus on the big tasks such as undergoing a procedure to get their first line (port or PICC) or what a hospital stay can look like so they feel prepared.  When a child feels prepared for what is to come, those feelings of anxiety and fear can be reduced.  Once you feel you have allowed them the opportunity to ask questions, you can stop and assess where your child is at mentally.