8 Things To Do That Will Help You Long-Term

When my daughter was diagnosed last year, I was immediately overwhelmed. I was handed a folder with tons of paper, I was being popped in on by social workers, different doctors came by to speak with us and the calls to family were mortifying. I have a background in this area and I was lost and I imagined how difficult it must be for other families out there. These were the first things I did to relieve some of the burdens and organize myself for the long run.

1.  Start A Phone Tree

The thought of calling my family was daunting. Every retelling of the story broke my heart all over again. Designate people to spread the information you want to share. Instruct them whether you are ok with people reaching out to you and how to do so. Do you want people to contact you or give you space? If you don’t mind interaction would you prefer text messages, email, or phone calls? By doing this, you can remove the emotional trauma of re-iterating your child’s path to diagnosis repeatedly.

2. Create Your “Brain” Binder

A “brain” in this instance is referring to Nurse slang for the paper we write all our patient’s background, care needs, and medications on so it is readily available.  When your child is first diagnosed there is so much information and paper given to you that it is easily overwhelming. Your parent brain, which may have been a steel trap before, is now a sieve with large holes. Making a binder that organizes all this information, can help you keep track of information like important phone numbers, care recommendations, procedure and treatment dates, medications given, and education specific to your child’s needs. Mine traveled with me to hospital admissions, clinic appointments, and consultations. You can check out my “Brain” binder here. This takes a lot of pressure off of you to remember all this information, especially as the weeks and months start to blend together.

3. Write Down Your Questions Then Ask and Repeat Back

Firstly, don’t ever be afraid to ask questions. It is important that you understand what you are being told. Secondly, questions we have about our child’s care don’t always come to mind when the doctor or other staff are in the room so write them down. For office visits, keep an ongoing list of your questions on your phone or a blank page in your “brain” binder. For hospital stays, pack a whiteboard marker. Use it to write your questions on the whiteboard in your child’s room which makes them highly visible. This is especially helpful if there is more than one caregiver. It helped my husband and I keep track of the questions we had when we were trading off for the weekend. Lastly, repeat the answer to your question in your own words back to the provider. This is helpful for a couple of reasons. The first is if you misunderstood, you can get corrected. Secondly, it helps you retain information better. It also confirms to your doctor and nurse that you did understand or in the future how to better explain things to you as an individual.

4. Partner Discussion

This is one of the most important conversations I have ever had with my husband. We took a moment after we were told of our daughter’s diagnosis to take a breath and discuss what the next year or so of our life would entail. We discussed that we needed to lean on each other even when we felt isolated, who would be the full-time caregiver for her, how we would share responsibilities, who we will share this information with, how we could find time to be together, how we can support our eldest daughter during this time and our beliefs on quality of life. This really helped us be on the same page. It was important to be open and honest with each other with the understanding that it was an ongoing conversation.

5. Set the Tone

Children of any age mirror their caregiver’s emotions. How you express yourself when you are stressed, angry, upset your child will do the same. So my best advice will be to “fake it ‘til you make it”. I’m not saying you are not allowed to cope however you see fit but in front of your child demonstrate how you want your child to act. In our experience, children who were the most anxious about their care had parents who were equally as anxious. For example, your child might have to get shots during their treatment. Instead of saying, “it’s not going to hurt”, “toughen up”, or “can we please give you your medicine?” try to say something more truthful, positive, and constructive. I would recommend, “ I know you are scared but this is important to help you feel better. It’s ok to cry or squeeze my hand as hard as you can and I’ll be right here with you but we need to stay still so we can get this done. Can we be brave together?” I do this with my eldest when it’s flu shot season. Your follow-up to a procedure is also important. Instead of saying “my poor baby. I know they hurt you. It’ll be ok” say something like “ You were so brave. I knew you could do it. I’m going to tell (favorite person) how brave you were today.” This way you aren’t criminalizing the staff and feeding the fear but acknowledging that they got through it and praising how well they did. My infant daughter can’t be reasoned with like this, so I did other things. I distracted her with kisses or toys and spoke to her with a neutral tone. When the procedure was done, I would always give her a big smile, hug her and tell her “Yay! You did it!” I guess what I’m saying is try to normalize these things even though we know they are not normal. How you set the tone can really influence how your child approaches treatment.

6. Utilize Support Services

Get to know all your support services and utilize them. Your social worker can be someone to talk to about what you are going through and can help find resources to help you emotionally or financially. Chaplain services are available for bedside prayers and can perform some rites depending on their background. A dietician is a great resource to discuss your child’s nutritional needs. If you have issues or questions about formula or your child’s eating habits, this is your go-to person. The Child Life Specialist (CLS) is one of the most underutilized members of the team. They are most known for providing toys or activities for your child but offer so much more. Their expertise is in child development and providing age-appropriate coping strategies. Ask them about coping, involving siblings, how to discuss cancer diagnosis with your child and/or siblings, organizations, and services available to you. Your CLS is a fountain of information, so take advantage. Lastly, I would recommend some form of therapy or support group for yourself or other family members. Being able to speak to a third party about what you are honestly feeling and discussing strategies to manage these feelings is a good option for anyone. These services are a great addition to your care team.

7. Rely on Your Support Group

Relying on your support group doesn’t always have to be talking to someone about how you are coping. If your family and friends ask what you need, take them up on their offer. Ask for meal delivery service gift cards to give you a break from cafeteria food. My aunt would send our other daughter coloring books, science kits, and craft projects. I scheduled mommy time by creating a novela club with my sister and best friend where we discuss episodes of a telenovela we streamed during the week. The availability of your support group may be different during a pandemic, as I experienced, but think outside the box.

8. Self-Care

The first time I got asked what was I doing for my own mental health. I laughed and said I don’t have time for that. I was sternly told “Ashley, you know better than that.” it was true. Nurses will always tell parents and caregivers the old adage of you need to care for yourself in order to care for others. It’s one of those sayings that is easier said than done. So like all self-sacrificing parents, I completely ignored it. It wasn’t until my therapist asked me what prevented me from taking 5 or 10 minutes for myself when my child was asleep. She told me to try to take a moment- go for a walk, read a book, listen to music, basically something that I enjoyed for just 5 minutes. It was a struggle at first to dedicate to this time but eventually, I realized I felt better. I got tired less quickly, was less cranky, and could do more with my child.  So I challenge you, to take at least 5 minutes for yourself.