According to the MD Cancer Center, more than 3,500 children are diagnosed with leukemia each year. Leukemia makes up about one-third of all childhood cancer cases. There is no known way to prevent it, but there are certain risk factors that can increase a child’s chance of developing the disease. Thanks to more recent medical developments, many pediatric leukemia cases are treatable, and the survival rate is generally good.
While this news is promising, if your child has been diagnosed with leukemia, it’s still terrifying. Nothing can help to emotionally prepare you for this diagnosis, but there are a few things you can do to help your family navigate through treatment while maintaining a higher quality of life and giving your child the ability to simply feel like a kid.
Understand the Diagnosis
Most pediatric leukemia falls into one of two categories: acute or chronic. Chronic leukemia impacts more mature cells and is the slower growing form of leukemia. Acute leukemia impacts immature cells and is more aggressive.
The majority of acute leukemia cases fall into two categories: childhood acute lymphoblastic leukemia or childhood acute myeloid leukemia.
Chronic pediatric leukemia typically also falls under two categories: childhood chronic myeloid leukemia and juvenile myelomonocytic leukemia.
Having a clear and precise picture of which type of cancer your child has can help you to better understand the treatment protocol and survival rate. Treatment options may include chemotherapy, stem cell transplants, targeted therapy or radiation therapy. In some cases, treatments might be combined, or you may be presented with different options to consider for treatment. Don’t be afraid to ask your oncologist lots of questions in order to best understand all of the options available to your child. Having this information is an important step in preparing yourself for the road ahead.
Get a Second Opinion
After you have gathered all of the information you need from your child’s doctor, it’s sometimes beneficial to get a second opinion. This second opinion might confirm the initial diagnosis, or it might present you with new information that changes the picture for your child and your family. Either way, it will help to bring clarity and can make the momentous decisions that lie ahead a little easier to cope with.
As you’re connecting with oncologists for a first and second opinion, expect to receive a lot of information. It is helpful to create an organizational system for this information. You’ll likely come back to it, and having it organized in an easy to navigate fashion can make that easier. Some families like to keep a binder, while others prefer to keep information organized on a laptop. Simply find a system that works for you, and stick to it as you’re walking this path.
Give Your Child Time Away from You
It’s normal to want to be with your child around the clock after receiving a leukemia diagnosis, but it’s important to spend some time apart too. Your child needs an opportunity to be a child. This happens when they attend school, participate in playdates with friends or go to sleepaway summer camp. Depending on what stage of the disease your child is in, this might mean providing them with support when you’re not with them through one-on-one school nursing services or pediatric nursing services. These moments of freedom can help your child to open up in a new way, feel more accepting of treatment and simply escape from the constant harping and worrying that is so normal for parents to do throughout this journey.
You Need Respite Time Away Too
As much as your child needs a little time away, you need to take breaks too. It might take awhile, but eventually you’ll feel comfortable leaving the house for a walk or a yoga class, returning to work or even spending a weekend away. This is crucial for your wellbeing, and it can give you time to focus on yourself, your spouse, your marriage and other children in the household too.
It’s especially important to find respite support and spend a little time away if you’re experiencing caregiver burnout. Signs of this can include:
- Anxiety, depression or excessive irritability
- Difficulty sleeping
- Difficulty managing your own health concerns
- Trouble concentrating
- Sudden or extreme weight loss
- Overreacting to minor nuisances
- Extreme exhaustion or lack of energy
Manage Leukemia One Phase at a Time
Leukemia treatment is a marathon, and your child might be in this battle for years. So, it’s important to take things one step at a time. Trying to look too far into the future or absorb too much information at once is an easy way to feel overwhelmed and exhausted even to the point that you lose hope. The first stage might feel like an onslaught of information and a rush to start treatment, so grant yourself a little patience even through this initial madness. Once treatment is underway, there will be moments of hope and moments of fear too. Progress and setbacks are common along the way. It’s important to maintain close communication with your child’s oncologist and accept their offer of support. Join a support network, accept social work case management services, consider classes or one-on-one sessions with an oncology nurse or pediatric home care nurse for education and to help clarify information.
In some cases, your doctor might recommend hospice care to provide your family with extra support, comfort and guidance. While some people view hospice care as an admission that a child’s death is inevitable, this is not the purpose of pediatric hospice care. Rather, this service helps patients to:
- Enjoy a higher quality of life
- Reduce suffering
- Support the child and family during and after treatment
Pediatric hospice care takes a holistic approach to providing care by implementing an individualized care plan and involving an experienced team of professionals including doctors, nurses, social workers, therapists, a chaplain and trained hospice volunteers. These professionals work with your family and your child’s oncologist to provide the most complete medical care possible.
There is no easy way to cope with a diagnosis of childhood leukemia, but this diagnosis also isn’t a reason to lose all hope. Take time to understand the specifics of your child’s diagnosis, work to give your child a normal life throughout their treatment, and reach out to family, friends and professionals for support. Your journey ahead may be a long one, but by doing these things, you’ll be in a much better place to make the decisions you need to make and feel more confident as you advocate for and support your child.