And I don't know what to do.
Written by Alexandra Neena and Adriana Lewin
If you have come across this article, you are likely the parent of a child who is sick or in pain for a reason you're not sure of yet. This is one of the most anxiety provoking experiences that you may ever go through. The goal of this article, and Family ChemoTherapy as a whole, is to support the mental health of children and families who are impacted by childhood cancer.
The journey of childhood cancer, as any parent can tell you, starts before the diagnosis is actually made. It often feels unimaginable and unacceptable to even be in this position of questioning whether your child may have cancer. That being said, there is practical advice that you can apply during this time that may reduce some of the distress you will experience over the next few days and weeks regardless of what is about to come.
If you feel something is wrong, YOU are the parent, and YOU know your child best. Advocating will take deligence and persistence. Most children are not diagnosed with cancer in the early stages, nor in the first doctor appointment. Most children have been to several specialists because the PARENT pushed for answers. Childhood cancer is "rare enough" that it's not always on the doctor's radars as the first and likely culprit. It's ok to seek second, third, or more opinions. You know when something seems wrong because you are the parent. If you are worried, it's ok to push for tests. Blood Cancers (like Leukemia) only require a finger tip poke at the doctors office. Solid tumors are a little more tricky, especially when the tumor is still too small to notice. But if your child experiences any of the following, it's ok to ask for more testing if symptoms persist(ed) more than a week or two.
An unusual lump or swelling.
Unexplained paleness and loss of energy.
Easy bruising or bleeding.
An ongoing pain in one area of the body.
Unexplained fever or illness that doesn't go away.
Frequent headaches, often with vomiting.
Sudden eye or vision changes.
Coping With The Medical Experiences
The process of seeking a diagnosis will most likely require your child to go through medical tests like X-rays. MRI, PET Scans or needle pokes. But to test for leukemia, it is as simple as a finger poke at the doctor’s office. These tests can be stressful for anyone, and more so for a child who does not know what is going on.
Ideally, prepare yourself and your child for the experience during the time you have at home before a procedure or while you are in the waiting room to provide your child with some expectations for these experiences. It is important to be honest (it might hurt a little) without being overwhelming (if there are multiple tests, prepare for them one at a time).
But know that you DON’T have to do this ALONE. Make sure you ask for a Child Life Specialist. This is their area of expertise: helping make these experiences less terrifying. In most cases, it’s ok to wait until one becomes available. Think of their very first experience with all the procedures as the introduction to what to expect, and if their first experience/first impression creates distress, it will take time to undo the fear and anxiety from it. Learn what the Child Life Specialist does to make the experience go more smoothly and keep it in your back pocket for the future, should you need it. But a Child Life Specialist is almost always available, especially at a children’s hospital, for any future procedures.
Distractions and rewards will be your two best friends during this process. Give your child control whenever possible - let them choose the toys or videos to be distracted by, and offer them to sit in your lap or in another position they choose. Similarly, let them choose a special toy or treat to receive after the procedure so they have something to look forward to.
If at all possible, avoid holding your child down or having others do so. You may need to ask the nurses for a few extra minutes to calm your child down to make this happen and request the Child Life Specialist to come help. Even though it may be stressful to advocate for your child in this way, it will greatly reduce the pain and fear that medical procedures cause, and can help future procedures be less of a battle.
Coping With The Emotional Experiences
Before and after medical procedures, you and your child (as well as siblings, if they are old enough to understand what is going on) will likely experience some anxiety. This is a very helpful time to model and practice calming strategies for dealing with anxiety. Even young children can benefit from simple techniques like breathing exercises. Deep breathing exercises can provide an easy place to focus your energy while regulating physical stress markers like your heart rate.
Here's one to try: take your child's age, and count that high to breathe in, hold your breath, and breathe out (e.g., for a five-year-old, five counts in, five counts hold, five counts out). You can practice alone before modeling this with your child, and you can modify the times to best suit your preferences if desired.
If they are crying, try to avoid telling them “Shh, don’t cry.” A more appropriate way to help them cope through the deep emotion is saying “It’s ok to cry. I know you are (mad, sad, scared). It’s ok to be (mad, sad, scared). I am too. Do you want (a hug, to sit on my lap, to hold my hand, etc).” This helps the child feel that their emotions are noticed and validated, they feel supported, and you model courage through the similar emotions which teaches them appropriate ways to cope.
Depending on how long you have been seeking answers on your child's health, you may have already received the advice to avoid online searching. More than likely, if you have ended up here, you have indeed searched online. That is ok. You are dealing with an abnormal situation, and there is no "wrong" way to respond. As much as possible, extend grace to yourself during this time. Your child's symptoms could have arisen due to a variety of reasons. Whatever the outcome may be, your child's suffering is not your fault.
What Should I Know About Childhood Cancer?
Each year in the United States, roughly 15,000 children and adolescents are diagnosed with cancer. There are many specific diagnoses that fall under the umbrella of childhood cancer. They all involve different treatment plans, and even two children with the same diagnosis may have different treatment courses depending on other factors. Most children do survive treatment, and many children are able to live rich, fulfilling lives as survivors. Because of the wide range of factors that impact an individual child's prognosis, it is important to avoid placing too much emphasis on the statistics that you may come across online. If your family is one of the many faced a childhood cancer diagnosis, connecting with other families who have been through this can be incredibly valuable. There are a variety of local and national organizations that support children with cancer, like Family ChemoTherapy.
While we wish that no child ever had cancer, we know that this is the reality for too many families, and no one should ever have to go through it alone.