parenting a child with cancer

By Kandis Lake, RN, BSN, guest blog post contributer. 

Photo Credit: National Cancer Institute on Unsplash.com

    Learning your child has cancer or another life-changing illness is probably every parent’s worst nightmare. While the medical advances to treat these life-changing diagnoses have never been better, it is still a very taxing experience for any family. Ways to navigate such a trying and difficult situation can include learning all you can about your child’s sickness, leaning on outside support, and knowing ways you can help your child and family cope.

Learning About Your Child’s Sickness

    Any good healthcare provider will provide you with ample education surrounding your child’s sickness, and what the sickness will mean for your child and your family. Don’t hesitate to ask questions, ask doctors to clarify meanings, and repeat what you hear to ensure you understand the information being given you. 

       If you are not in a good headspace to understand what you’re being told, it’s a good idea to ask if you can be given the information at a better time. It is also a good idea to have another family member or support person receive the education with you, so you can both learn together and help each other remember and understand in times ahead. If you get home and think about something you need clarified, you can always reach out to your child’s healthcare provider to ask questions or get more information.

    Study any materials your child’s healthcare providers have given you or resources they have suggested. Seek out reputable sources for further information. The American Cancer Society has a lot of information online about all types of cancers. Advocate for yourself and your family to ensure you understand what you need to, and can feel empowered moving forward.

Take Care of Yourself and Get Outside Help

     Be sure to take care of yourself so that you can handle your difficult situation in the best way possible. Take care of yourself so you can take care of your child. If your child is staying in the hospital, take advantage of working with a social worker and case manager to ensure you and your child are provided with everything you will need when you go home. Many hospitals have a chaplain whose job is to help patients and families care for their spiritual needs. If your child is being cared for at home, take regular breaks by setting up respite care (when a healthcare professional, such as a nurse, temporarily cares for a patient at the patient’s home).

     Accept your feelings about the situation you are in without judgement. Talk to a friend, family member, or counselor about the difficulties you are facing, or write your thoughts and feelings in a journal. Talking and writing can help you process your experiences and help you better cope. There are online support groups for a wide variety of situations and illnesses. An online group could connect you to other parents or caregivers who are going through something similar.

      If you have other children, seek a balance of personally caring for them and asking for help to care for them as well. This could be a very difficult time for them and they will need help and support through it. You will likely need help caring for them while your child is sick.

     Utilize any church or community support available. Don’t be afraid to ask for help during such a difficult time for your family. It can be hard to ask for and accept help, but doing so is in your child’s best interest, as well as your own. The less stress you feel in regard to all aspects of your life, the more energy and focus you can put into supporting and bonding with your child when he needs you. 

      Cheryl Harris’s son was diagnosed with Acute Lymphoblastic Leukemia when he was two and a half years old. Cheryl said, “Almost more than the sleepless nights and endless tears during that time, I remember the amazing, wonderful good people who showed up for us.” She describes friends, family, and hospital staff giving immense support.

      Her own parents drove across the country to help, and her mother stayed with them for six whole months. They had friends that brought gifts for her child, and others offered to watch her one-year-old since Cheryl was so frequently at the hospital and at appointments. Friends and family who didn’t live near them sent the family frequent words of comfort and love.

      Many people also find strength and support in spirituality or religion. Faith or spirituality can be very helpful in coping for some. Cheryl remarked about her faith, “I am so grateful for the gospel and the knowledge of God's plan during that time. I knew no matter what may happen, everything would be okay.”

Helping and supporting your child

     The most important thing you can be doing at this time is helping your child. You will best accomplish this by taking breaks and accepting help yourself, as discussed above. Take time to address your child’s concerns and answer his questions. Speak to him about what is happening in a way that is appropriate for his age and level of understanding. The American Cancer Society has some great advice for communicating in age-appropriate ways here. 

      When asked how she helped her young son, Cheryl said, “I prayed for and tried to have an abundance of patience and stamina. That was absolutely necessary. I cleared my schedule and dedicated my life to comforting him in any way I could.”

      Your child will likely feel a range of emotions as he lives with his illness, as well as because many aspects of normal life are altered because of it. Be a safe space for your child to express thoughts and feelings, free from any judgement or shame. Resist the urge to try to change those feelings. Every time your child has difficult feelings, it gives you the opportunity to strengthen your relationship through supporting him. Having a strong and secure relationship with your child will in turn help him build resilience and confidence, and also give him the tools to navigate difficult feelings in the future.

      Cheryl kept a blog during her son’s battle with cancer. One story illustrates the need children have for their parents: “He woke up once while they were taking his vitals and was in pain. His little body tensed up and I could tell it hurt when I moved him. He asked to ‘give Mommy hugs,’ which means to hold him chest to chest, bear-hug style, but when I picked him up he was so rigid and stiff and couldn't relax. I called for more pain meds. I asked him where it hurt and all he said was, ‘Mommy kiss it better.’ He's said that a lot the past few days. That has been the hardest part for me.”

      Helping your child cope with stress, navigate difficult emotions, and express himself could prove to be extremely difficult, especially if you haven’t had a lot of experience with healthy coping and emotional expression yourself. A child life specialist (often employed at pediatric hospitals) or a counselor can help you and your child with this.

      Recognize things that comfort your child. It may be a pacifier, blanket, special toy, or favorite book or movie. Whatever comfort object there might be, allow your child to have it readily available. Be sure hospital staff and any other caregivers know ways your child likes to be comforted. Like Cheryl with her son, be there to comfort him yourself as much as possible.

      It can also be important to try to incorporate some routine and normalcy into your child’s life. This can include doing schoolwork, socializing with family and friends, playing and being silly, and having some routine to his care. Let your child take opportunities to enjoy being a kid. Find ways for your child to maintain sibling and family relationships.
    
Conclusion

      The ways you can help your child with illness as his mother is monumental. You and your family will be empowered through learning and understanding as much about the illness as you can. As you take care of yourself and to seek and accept help from others, you will better be able to care for your child and be there for them. You can play an important, unmatched role of providing support and comfort to your child during this very difficult time. 

      Cheryl’s advice to other moms who experience something similar is “Let people help you. Take care of yourself. Let things go that don't matter. Count your blessings along the way and recognize and appreciate the beauty of all those who are trying to help. It will lift you.” Cheryl’s son received cancer treatments for five years. He is now a healthy, thriving eleven-year-old.

For more information see:

cancer.org/latest-news/caring-for-children-with-cancer.html

https://www.cancer.gov/about-cancer/coping/caregiver-support/parents

Kandis Lake, the author, is a professional health writer and can be found at www.healthwriterkandis.com