Lisa Baker

TABLE OF CONTENTS

Dedication
Introduction
PART I – NAVIGATING THE JOURNEY
Chapter 1: The Diagnosis
Chapter 2: Home Away from Home
Chapter 3: Communication with Healthcare Providers
Chapter 4: Communication with Family and Friends
Chapter 5: Caring for Siblings
Chapter 6: Asking for Help
Chapter 7: Advice from Parents
PART II - RESOURCES
Chapter 8: The Healthcare Team
Chapter 9: Emotions and Coping
Chapter 10: Child Development
Chapter 11: Final Thoughts
References
Notes

INTRODUCTION

The word “cancer” can strike fear into any heart, but especially when it relates to your own child. In 2016, our family began a journey that led to our daughter being diagnosed with a Grade 3 Anaplastic Astrocytoma: in layman’s terms, a big, scary brain cancer. What followed were multiple surgeries and weeks of hospital stays, plus countless outpatient appointments and therapies in our local children’s hospital. We should have been prepared for this. I was a former medical social worker, and my husband was a physician. But I didn’t know how to best help my child during this time. I searched and searched for advice online but was left with nothing practical. I knew that the care team was taking care of her medical needs, but I needed to know how to be a parent. What could I do to make the long stays and uncertainty more manageable for her, how could I also take care of our other daughter, and how could I manage the huge influx of people wanting to help and wanting information? It seemed overwhelming.

We did the best we could and learned some interesting tips and tricks along the way. After our experience, I felt a deep longing to help other parents who were in the same situation. Surely, I couldn’t be the only one with these questions? And so began the basis for this book and the research study that has grounded these chapters. Over the past year we have surveyed over 150 parents who had a child with an extended hospital stay, asking the same questions that I posed to myself. We asked about managing the hospital environment, handling communication with both care providers and extended family and friends, how to care for siblings, and how to manage help from others. What resulted was an outpouring of advice and tips reflecting the experience of other parents. While reviewing the data and putting this book together, I decided that we also needed additional chapters on handling emotions and a little about child development. Since these were not the specific questions asked in the survey, these chapters reflect current research as well as some anecdotal content.

The information in this book is directly from our own experiences, the experiences of other parents, and what we know from the research. There was a lot that we learned and a lot we didn’t get right, but we got through. I have added a “swing and a miss" section to highlight one of those misses. The thoughts are merely suggestions for you to take or leave, considering what might work best for your family. They come from families in a wide variety of medical settings, from local rural hospitals to freestanding pediatric medical centers. As such, your setting may differ in what you are able to apply. I have started each chapter with an introduction based on our experience. As I am coming from a Christian perspective, you will see references to my faith. My faith was a support to me and remains an integral part of my journey. If you bring a different faith perspective, I am hopeful you will still find value in the experiences of others.

My desire for you as you read through this book is that you will use it as a resource, developed by people who have walked in your shoes, and that it may make the experience a little less overwhelming and give you a little more sense of control as you navigate this journey. If nothing else, I hope it lets you know that you are not alone.

CHAPTER 5: CARING FOR SIBLINGS

The day after the “big surgery,” the surgeon came in after an MRI and said that he felt the need to go back in to check for another small part of the tumor. We had prepared ourselves for the surgery the day before, but this felt more like an emergency. I felt that we had been blessed that the first two surgeries were without complications, and I was scared that we wouldn’t continue to be so lucky. The medical team was prepping the operating room and said they would take her back as soon as it was ready. It all felt too fast. Her younger sister was at school, and I wanted her to be at the hospital with us. I had arranged for a family friend to go to the school to bring her sister to the hospital. I called the school to speak to our younger daughter and she was upset, saying, “I want you to come and get me, please just come and get me.” I told her I would, but when I went to tell our other daughter (the patient) who was at the hospital, she said, “Please don’t go, I need you here.” It was one of the worst moments that I have ever had as a parent, knowing that both of my children needed me to be with them, and not having the ability to be there for both at the same time. It was just as scary for them. My heart was broken in two. 

***

Having a child in the hospital is challenging enough, but also having younger or older siblings at home can add to that challenge. Age, developmental stage, and individual struggles can all be influencing factors in how well siblings can cope with another sibling’s hospitalization. The parents we surveyed talked about their feelings on some of those challenges.

Time Management and Juggling Responsibilities

Not having enough time was a very common concern of many of the parents. One parent shared, “I didn’t have enough time to take care of her sibling or family members, because most of my time was spent in the hospital,” while another shared that “Having 2 kids is difficult because us parents are always having to choose between kids. [Deciding] who is going to be with which one? That is the hardest thing.” 

The difficulty of choosing between children was a very common concern, especially when both were at ages where they needed some level of care. Many families had an older child who was in the hospital as well as a younger child or infant. Multiple children means juggling childcare, infant schedules, and school schedules. One parent wrote, “At the time of [his] diagnosis, we had a 1st grader and a 3-month-old. Our infant was at every hospital stay, clinic visit, and everything in-between the entire time—that was challenging.” Parents echoed this sentiment, saying that they didn’t always have the option to leave a younger child with someone else, which meant that younger child was always in the hospital as well. 

Older children, who can be more self-sufficient, may require help with homework, meal prep, and getting to and from school and activities. Several parents commented that their mornings were spent getting their school-age children ready, dropping those children off at school, and then going to the hospital to see their other child. Once at the hospital it was very hard to leave, even when they knew that it was time to pick their other children up from school or daycare.

In addition, this schedule allowed for little time to be able to keep up with things at home. Even simple things like grocery shopping and doing laundry became tasks that were left unattended. As such, juggling responsibilities was demanding, as this parent wrote: “Inability to multitask was a great challenge, [as] I also experienced a lot of emotional and financial challenges and difficulties” that made it difficult to get everything done to care for the family.

One family shared that it became so difficult to manage all the responsibilities that they gave temporary custody of their other child to a relative. “When our son was first born and all his problems started, I had to give my mom temporary custody of my oldest son, so she could take him to school and doctors and sign papers and stuff he needed, so I could stay at the hospital. I took weekends to be with my oldest and mom stayed at the hospital so I could make sure my oldest didn't feel left out and I could make my oldest feel special too. And mom was still there for my oldest son too.” This may seem like an extreme; however, families need to recognize that coping mechanisms may differ from what you are used to doing. Using available resources and being creative can help manage the situation.

Emotional Support

In addition to the concrete needs of siblings, there is also a need to be present emotionally as well. It is sometimes difficult for siblings to understand everything that is happening, because it is also difficult for the adults! A sibling’s age and emotional development play a big role in how much information they can receive and process, also differing from child to child. This is another instance of you knowing your child the best, and you will need to make the decisions that you think are correct at the time. I will say that from my years of work as a pediatric social worker, I tend to err on the side of including siblings as much as possible, primarily because when children are not presented with information they tend to make up scenarios in their heads which may be far worse than reality. When a sibling is visiting their brother or sister in the hospital for the first time, it is very helpful to discuss ahead of time what they might be seeing, especially if there is a lot of medical equipment involved. A child life specialist or social worker can also help you navigate these visits and may even be able to meet with the sibling ahead of time to normalize the environment.

Many parents spoke to the need for providing emotional support to the other siblings while balancing the amount or detail of information provided. One parent shared, “It was very difficult to know what the other sibling needed. I wanted to keep them informed without upsetting or scaring them.” Another wrote, “The other child was very understanding although they didn’t really understand. They were scared because [they saw] me worried.” They further noted that “the biggest challenge was [the sibling] wondering if Mommy was going to be okay? They didn’t really understand, but they never felt like I wasn’t there.”

It can also be hard for siblings to see their brother or sister ill, or looking different than they are used to. One parent shared that it was hard for her daughter “to see her sister being sick and lose her hair,” while another one shared that the siblings were “stressed about the state of disease.” As a parent, it can be difficult to know how much to share about the state of the disease, and when to involve other children in difficult conversations. Again, in these situations the best response is often one that is clear and honest, providing age-appropriate information. Child life specialists, social workers, and even chaplains can be a great resource when deciding how much information to share and the best way to handle providing that information and support.

Decreased Attention

When parents need to be with a hospitalized child, it often results in having significantly less time to spend with other children, especially when those children might be experiencing their own difficulties. Not being able to give adequate attention to other siblings can leave parents feeling torn between children who all have different needs. This is especially true with younger children. One parent shared that “Helping young children understand and be okay with not getting all of the attention they were used to” was very difficult as a parent. In addition, hospital facilities may not be equipped to accommodate younger children who are visiting. While some children’s hospitals do a great job at this, others simply may not have the available space or resources to engage and occupy younger visitors. Or the health status of the hospitalized child may necessitate limitations on visiting and interactions. Having a small bag or backpack with games and toys for the visiting child can provide a special distraction when they need to spend time in waiting rooms or other areas, especially when this “go bag” is only reserved for hospital times.

Routine

Routines are safe and familiar! Try to keep the routine of the sibling intact as much as possible. Children thrive on routine and consistency. At a time when there may be much that is unknown, routines such as school, extracurricular activities, sports, and spending time with friends become very important. Children tend to confide more in their peers than other adults, so allowing time with friends provides an outlet for feelings as well as a support network. This is also a way to provide “protected time” for the sibling. Siblings need an opportunity to continue with practices, games, playdates, and other connections with friends. It is often said that “play is the work of children,” and this is very true. 

Children of all ages need time to work out their feelings through age-appropriate outlets, and to have times when they are not required to be engaged in hospital activities. For example, a child who has been waiting in a waiting room all day while their sister or brother is having a procedure may be concerned about being late getting to a practice or game later that afternoon. As adults we may think that it is insensitive, when their sibling is having a medical crisis, but take a moment to recognize that the outlet of attending practice is a great way for the sibling to reduce stress, refocus their energy, and have the support of their peer group in a less threatening environment. If you aren’t sure what is important to the sibling—just ask them!! Giving a sibling the opportunity to talk about what is important, and not judging the answer, provides reassurance and security, especially when they feel safe in expressing their concerns. If you can’t get the sibling to some of these activities, or go watch their game, this is a great job for friends and family who want to help.

Siblings Get Sick Too

At some point, there may be a sibling who gets sick too. Talk about complicating things! It can be easy to dismiss the common cold or minor injury when dealing with a child who is hospitalized for something more severe, but I guarantee that the sibling is also going to be looking for validation. Take this as an opportunity to show the sibling that they are also important. I know, your emotional batteries are already low, but showing attention at this time to a younger (or older) sibling can assure them that they are also loved and cared for. Extra care, attention, check-ins, snuggles, and hugs provide physical and emotional support that offers validation to the sibling that they are an important part of the family, and that they matter. Beware when people say that the other child doesn’t have it as bad. Because while that may be true in a medical sense, I have always been of the mindset that suffering is not a competition, and all forms can benefit from some extra care and attention.

Hopping on the Drama Train

Just as you, as the parent, need to manage an influx of people wanting to share in the communication loop or the happenings at the hospital, your child may be experiencing the same thing at school. Especially when the sibling is older, such as middle or high school age. It is not uncommon for a new group of “friends” to pop up and want to be included in the attention. If you sense this is happening, I encourage you to be the gatekeeper whenever possible. Give your child permission to set boundaries and limit the number of people they share information with if it becomes bothersome.

Tell Me About It

Want to know what the sibling is thinking? Ask them! Siblings (of all ages) are curious and typically eager to find out more information. They need an opportunity to process what is happening in the family, even if they don’t take advantage of it. Below are some prompts that might get the conversation going:

• How are you doing? Followed up by my favorite question: How are you really doing? A great way to get past the automatic “I’m fine” response.
• Tell me what you understand about why your sister/brother is in the hospital.
• What is the scariest part of visiting in the hospital?
• What is the scariest part of having your brother/sister in the hospital?
• If I had a magic wand and could make one thing different, what would it be?
• When you are scared or sad, what makes you feel better?
• If Mom/Dad can’t be with you, who is the next best person who makes you feel comfortable? Why?
• Are there things that we used to do as a family that you miss?
• High/low (this a great question for school-aged children): What were the high part of your day and the low part of your day?
• Are your friends doing anything that is really helpful? 
• What one question do you wish people would stop asking?
• What do you wish your friends would know about what is happening?

Patience

Patience—here it is again! Patience is important when dealing with siblings, especially when it is hard for them to understand the situation. One parent wrote, “Our oldest struggled with jealousy for the attention, gifts, and opportunities that were given to her brother following his diagnosis. Trying to teach a young child to not be jealous but to be thankful was very challenging.” This can be true no matter the ages of the children involved, and honestly, sometimes difficult for all involved. A parent who had infants in the neonatal intensive care unit wrote, “My oldest son also needed me, and at his age he couldn’t really understand most of what was happening. He knew the babies were in the hospital, but he was never allowed to see them due to cold/flu season (and new COVID protocols). They were almost like unicorns to him during that time.” 

So, what is helpful when you lose patience, or feel like you just don’t have any more personal resources to handle what is in front of you? Eliminating the situation is not an option, so you need to go to Plan B, which may mean removing yourself for just a moment. I like to call this a “personal” time out! Take a walk, go get a cup of tea or coffee, practice some deep breathing, or just take a moment to gather your thoughts before you respond or react. One day at a time may become one moment at a time, and that’s okay! 

Being Okay with Getting It Wrong

Which brings me to my final piece of advice for helping siblings: Rely on friends and family to help whenever possible, but know that at some point you are going to get it wrong. Please understand, my dear parents, that I say this with the greatest amount of empathy, because I have been in your shoes. You may not be able to be there when your other child is sick with a cold. You will probably miss something important at school or miss an infant’s milestone. You may go home from the hospital after your other children are already in bed, or you may not be able to leave the hospital at all. You are going to feel torn, guilty, and possibly like the worst parent ever (any tears yet?). Know that you aren’t! You must give yourself grace in those moments. You are dealing with an unusual situation, and it is probably taking all your resources just to get through the day. That is okay—you are showing up! Your other children will be okay, and they may even learn some valuable lessons along the way. Are they things we want them to have to learn? Probably not, but don’t forget to look at the growth that can come from difficult experiences. You are one person, and you aren’t going to be able to be all things to all people. It will be difficult, you will feel at times like you aren’t doing a good job at anything, but I am here to tell you that you are. No one is prepared for this, and we all do the best we can in the moment under extreme circumstances. Grace, grace, grace is what I want to share with you. You will get through—and know that I am sending you a hug.