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Category: For Parents

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For Parents

How to Stay on Top of Medication

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hen several different medicines were needed to be given over and over again, day and night, it was hard remembering if I had already given a certain medication or what time it had been. Well, except for the pain meds, you can tell with those. Some medications are needed only on weekends, some are needed at night, some every three hours, and some every four. I was so thankful when my husband showed me this app!

An app called “Medisafe” lets you put in the medication that is needed, including what days, what times and what dose. It then alarms you whenever it is time to give each medication. You can also connect people to the account so they can also give you a reminder if you happen to shut it off before you get to it. If someone else is watching your child and able to give meds, they can be added to the list and know what to give. 

This app also gives you information about what each medicine does, how it works and if it has any additional side effects when combined with other medications.

What are your top tips for managing meds? Please share them in our community group! We would love to hear from you.

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For Parents

Family Unity

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ne parent at home taking kids back and forth to school and activities, the other parent at the hospital keeping track of symptoms and talking to doctors. Maybe one parent is working, while the other is giving meds on schedule. Or perhaps one parent is overwhelmed with stress or depression, and the other parent is focused on keeping the family happy. Not to mention, these things can change by the month or even by the day! So how do we keep the family feeling united in a time of chaos? Here are some tips.

Family Night

If you don’t have one yet, you don’t know what you’re missing until you try. Pick a day of the week that your family will spend together- watching a movie, playing a board game, having a bible study, going on a walk, etc. Every week that everyone is home, you do that activity. For us, we did a video devotional and a movie while we had pizza, popcorn and carrots every Friday. Many weeks we missed it due to hospital stays but when we could, it was such a joy for everyone and we all look forward to it.

Video Chat

During times of separation, make an effort to keep updated as parents everyday through a call and texts throughout the day. Video chats are especially helpful for kids to feel connected to siblings and the other parent when everyone can’t be together. Making a time everyday to do this may be hard due to different schedules but there is definitely something powerful to seeing faces as well as hearing voices. We only made the effort sometimes to video chat but calling everyday was a must for us and helped a TON with relieving stress and feeling like partners.

Build on Strengths and Availability

Make something great out of your family’s ingredients. What can everyone bring? Attentiveness, routine, joy, fun, peace, finances, support systems, faith, research, resources, encouragement, etc. Everyone has a position to hold when under deadly fire. Of course, everyone will bring their weaknesses too and everyone requires time and energy to stay afloat. This complicates the battle plan but get one together and modify as you go. Plan to succeed!

Focus on Faith

God was our support, day in and day out. One phone call while sitting in a hospital bed most of the day only goes so far. Is a few texts really enough while you’re suddenly feeding, bathing and transporting kids between work calls and worried about what’s happening at the hospital? One family night out of seven nights a week makes a difference but will it carry you the distance? I’d be wrong not to share my greatest help. A relationship with God gave me continuous support and still does even after our loss.

Keeping the family united through a cancer journey gives a peace, joy, and confidence. If, you’ve been on this journey, what are some tips you have?

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For Parents

Tips for Talking with Your Medical Team

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hat do you do when you go through the emergency room with a team that hasn’t seen your child before?  Or you are having difficulty managing pain during a night shift and your typical team is gone?  There are dozens of situations where it is important to sort through confusing information or advocate for your child.  Aggressive responses can lead the doctor’s to become defensive but being too shy to share a problem could have consequences.  These are tips I learned (the hard way) on how to discuss issues with the doctors.

1. Ask Open Ended Questions

It took me a long time to understand the importance of asking my doctor for more information about something that concerned me rather than telling them what I learned and what I think they should do about it. They sometimes responded to my “aggressiveness” by either signaling they needed to move on to another patient (“We’ll check in on this later”) or suddenly being much more forceful with their original advice.  Neither response was gave me the information I was looking for. 

Here are some examples of open ended questions you can ask to GET ANSWERS:

It looks like _____ is happening/could happen. When I read about ____, I felt concerned about ____. As

a doctor, what are your thoughts about this?

“What does that sound mean?”

“When do you expect this symptom to clear up?” followed by “What will we do if it doesn’t by then?

What are the risks?” followed by “So, what are our choices?”

“Why do you prefer this solution over the other one?”

“Yesterday someone said this, and now I hear this. Can you help me understand what is going on?

 If you don’t get a direct answer, take a second and ask it again, mentioning which part of the question wasn’t addressed or the part of their answer that doesn’t make sense to you.

2. Summarize to the doctor what you heard them say.

Doing this lets them know you are listening and they aren’t wasting their breath. This is a good skill to use anytime you really need to understand something or if there is a disagreement of some sort. If it sounds like they are repeating themselves and you feel like something is still missing, write down what they said and ask another team member.  This tip is short and sweet but SUPER important.

3.  Be Clear About How You Feel

This is the time to practice being vulnerable!  Childhood cancer, hospital stays, operations, MRIs…. All of these things are the opposite of normal and it is expected you will be scared.  You may feel like medical staff won’t listen to you if you are being emotional.  Still, feeling words clue them in to keep communicating with you because something isn’t right. The main thing is, use words that you wouldn’t use for everyday situations.  

Examples:

“The risks with this procedure are terrifying!”

“You lost me when you started talking about __________! ”

“I’m furious that it is taking so long to get this taken care of for him/her!” 

“I’m embarrassed that I trusted ______ to take care of this!”

Check out this emotion wheel for feeling words rated “high”.  These won’t get you kicked out of the hospital but have the same effect as those other words.

4. Know WHO To Ask

I can never forget the night I had with a nurse who insisted that the aspirin my one year old kept throwing up was enough to manage his pain. There were many tears that night and not just my son’s. At the time, I didn’t know what to do beyond pleading with her every time he vomited and eventually resolving to wait until shift change and complain to the next nurse. I was horrified to encounter the same problem again the next morning! My night nurse had apparently told all the other nurses to be careful about giving my baby meds he didn’t need at my request (one nurse finally told me!)  Eventually, I learned there are other people beside my nurse who I can speak to when I have an immediate problem.

Your nurse is usually a button push away so it makes sense to address things with them first and they usually know where to go from there. If the nurse is not being helpful, next you can request the Charge Nurse. You can also request a doctor to speak with.  If all else fails, seek someone in administration or the patient advocate. You can find their number by searching on the hospital website. Let’s face it, nurses and doctors may talk amongst each other before seeing you. A patient advocate is a fresh pair of eyes whose job is based on supporting you. They are there for a reason. Here is an article from the LATimes that describes this process further.

What are your tips for talking to doctors? Let us know and we may include it in a future blog!

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For Parents

Faithbox

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any people share that their faith helps them stay strong through a cancer journey.  However, your child being struck with a deadly illness with no explanation also tests beliefs in God, who He is and what He wants from you like no other circumstance.  Spiritual support can be an enormous comfort during this time and after the cancer journey ends.  Of course, the best spiritual support can’t come only in a box, but there are resources that  are handy tools to upkeep your spiritual armor.  

A Faithbox subscription surprises you at your door once a month with encouragement, goodies like jewelry or makeup, and devotionals to dive into to keep faith uplifted which is so beneficial during a very difficult time. They address topics like anxiety, loss, thankfulness and more.   *Imagine* mom coming home after an unexpectedly long stay in the hospital to a box filled with items meant to encourage her spiritually and feel cared for.  I always opened my box with anticipation first thing I did when I came in and sat down (after greeting the rest of my family, of course).  This makes a great gift for a mom of faith dealing with childhood cancer.

Does faith help you on your childhood cancer journey?  Please share your thoughts in our community group!