When your child has cancer, no one understands your life better than another parent going through the same experience. Connecting with other parents of children with cancer can be one of the best ways to deal with the challenges you face. Here, parents who have been through cancer treatment with their child offer some helpful advice.
Advice for Getting Through Treatment
Stay flexible. Understand that treatment plans and timelines often change as a result of low counts or other factors.
Don’t be afraid to ask questions. There’s no such thing as a dumb or silly question. It is also perfectly okay to ask the same question over and over.
Keep a notebook. List all important phone numbers – or save them in your phone. Some numbers you might wish to keep handy include the after-hours nurse line, radiology, scheduling, social worker, and hospital school teacher.
Keep a list of your child’s medications and the times your child takes them. Also write down any information you want to share with the doctor and/or medical team at appointments.
Take notes during visits with your child’s doctors. It can be hard to process what they are saying and you will want to refer to those notes later.
Talk to the Child Life Specialist about how to prepare your child for what lies ahead. They will help you understand how to share information in an age appropriate way. They can also be helpful in guiding you about talking to siblings, what to tell them, etc.
Build trust with your child. Don’t tell him or her a procedure isn’t going to hurt if it is. The Child Life Specialist can guide you on how to provide reassurance while still being honest with your child.
It is okay to need to get out of your child’s room or leave the hospital for a while. You have to take care of yourself so you can endure the marathon.
Every single child is absolutely unique. Do not assume your child will follow another child’s treatment path, even if it seems the diagnosis is the same. There are so many factors that go into treatment determinations. Try not to compare your journey with others.
Don’t be afraid to use humor to deal with anxiety and stress. Laughter is good for the soul.
Getting to know other parents on the floor can really help. You can share tips and ideas with each other as well as emotional support.
Bring someone with you for major appointments – scan results, treatment plan discussions, family meetings, etc. They can assist in taking notes, asking questions, and helping you remember important information.
Consider sharing updates about your child online. Not only does this keep your friends and family updated, but it relieves you of having to field endless calls and share the same updates over and over. We love caringbridge.org where you and your child have a little more privacy than on social media. Remember that once you put the medical information on social media, it is accessible by anyone unless you create a private group.
When help is offered, say “Yes!” And tell people what you truly need. People want to help and often, they feel really burdened when they cannot help you. So remember that allowing them to help is a gift to them as well as a help to you.
Try not to change the way you treat your child. You still need to have rules and set boundaries. It is sometimes hard to do that with a sick child, but we believe it was one of the best things we did.
Your attention and energy are understandably on your child who is sick. Do your best to remember that this is also tough on your other children. They may be scared, sad, and anxious. Share with them what’s happening and reassure them that they are important. Try to set aside time for them. Listen and acknowledge how they are feeling.
It is perfectly all right to be honest when someone asks how you are feeling. Remember, no one is “fine” all the time.
“Look for the little blessings and live in the moment. There are lots of little things to be thankful for, but you have to look for them.”
-Mother of a child with cancer
Use EMLA cream before your child has his/her port accessed. Use Press’N Seal to cover the EMLA cream because it stays on your child’s skin without being sticky when it comes off.
For unexpected trips to the ER, ask for the nurse to use LMX, (which is like EMLA but works faster) before having your child’s port accessed. If they can’t use LMX, ask the nurse to use ColdSpray.
Buy a pill box with 7 days and spaces for 4 doses per day to help with medicine-taking schedules.
If you need to mix pills with food here are a few ideas:
- Crush pills and mix with a teaspoon of double fudge frosting or Nutella.
- Try purchasing every flavor of applesauce. Each night allow your child to pick which flavor he/she wants.
- Add liquid medicine to Hershey’s® syrup.
If pill swallowing becomes too difficult, try using pill swallowing cups like Oralflo or Ezy Dose Pill Cup.
Ask about “Magic Mouthwash” for mouth sores. It can make a big difference.
Questions to Consider Asking Hospital Staff While Inpatient
What is the meal schedule (days/times) when outside organizations provide meals?
Are there discounted or reduced rates for food services or parking?
Are mattress toppers available for the caregiver’s or child’s bed?
Is laundry detergent available? (Sometimes outside organizations provide it for you.)
Is a curtain available for the window to the hallway?
Can I check out games, books, movies, and activities from the library?
Can the music therapist and/or therapy dog visit with my child?
*Please note that different services are available at each hospital and check with your child’s social worker for specific resources your hospital provides.