We are members of the Family Advisory Council (FAC). We are a volunteer group of caregivers for pediatric patients past and present and our goal is to help staff and family members to collaborate effectively in the care of our children.
Every parent who has shared their advice on these pages has experienced some of the shock and overwhelm that you are probably experiencing right now. These notes are a compilation of the things that we, learned along the way and which we hope will help you too.
Our Family Advisory Council includes parents of children diagnosed with chronic illnesses that required multiple hospitalizations over long periods of time and one mom of an extremely premature baby who spent months in the NICU before discharge. All bring their unique perspective to the FAC team.
Care for Your Family
Talk to Your Child
You Are On The Team
The most important thing to remember is that the hospital team is here for you and wants to do the best for your child. And now, you're a member of the team.
What is your job on the team?
Listen carefully. Take notes. Speak up. Ask questions. Repeat medical information back to make sure you have heard and understood it correctly. Help with safety. Make sure caregivers wash their hands and remind them if they don’t. Learn about medical care and how the team keeps everything clean.
We asked our FAC parents some important questions about their experience as parents of pediatric patients. Here is what they wanted to share with you:
REMEMBER TO BREATHE.
Make sure to take a moment to breathe. Ask for help from family and friends. Connect with someone who may have gone through or is currently going through a similar situation. Journal and write down questions. Be sure to eat, drink and sleep if you can.
"DO NOT GOOGLE IT!"
I am one of those people who cannot stand not knowing everything there is to know about any particular topic, and I wanted very badly to know everything there was to know. However, I took Dr Muhlbauer’s advice to not Google, and I let the doctors explain it to me first.
Why stay clear of Google?
- Every diagnosis is different, and has a unique treatment protocol, prognosis and recurrence. Not only is every illness different, but every CASE is different and unique.
- In my case I met another family whose daughter, had the same cancer as my child’s. Because of her age, and the location and nature of her tumor, her treatment plan was totally different.
- Other people’s stories don’t all have a happy ending. They can make you more afraid. They can make you lose hope, or to find false hope.
Learn everything there is to know about your unique situation first. Then, once the fog clears you can start researching.
SET BOUNDARIES AND SPEAK UP.
Advocate for your child. Try to get a good understanding of your child's current medical situation so you can be a part of making the right decisions.
YOU DON’T ALWAYS HAVE TO SAY NO
While my son was being treated for cancer, my eye was solely on curing him. My first reaction to any exceptions he wanted was no. No, it has to be done the way the doctor said. No, we can’t go to this event because you have a treatment.
It never occurred to me to ask where the boundaries had a little give. It was my son who would ask, and surprisingly, the doctors were happy to make adjustments to the plan when they could. With so much out of his control, regaining some normalcy and participating in activities when he was able, gave my son a much-needed emotional lifting. And when there could be no flexibility – it allowed him to accept his limitations because he trusted that the doctors would accommodate him if they could.
It took me time to see my son needed small things to look forward to – going to a game, visiting his classmates, etc. I had to force myself to focus on how to make the moments better for him along the way.
THERE WILL BE TEARS.
Even though my teenager’s whole tumor was removed in the initial emergency surgery, they still had to endure the whole treatment plan of 14 rounds of chemotherapy. It was all very overwhelming.
My kid is a very unique person, and being a teenager in treatment during COVID meant a lot of isolation. No one could visit them in the hospital during treatment except for me and my husband, and we could only be there one at a time. There were so many tears. Teenagers are in the height of their emotional development and feel things very deeply and extremely. We had to learn how to manage this. We had to learn how to distract, calm, assuage our child who in many ways was already an adult, but who cried in my arms like a baby for days on end. This was the hardest part. It’s OK to be overwhelmed. It’s OK to cry. It’s natural and normal to express your feelings.
I felt I did my absolute best. So trust yourself, and give yourself credit for what you have accomplished.
FIND A WAY TO INCLUDE SIBLINGS
On TV and in movies, you always see people visiting with kids in the hospital wards. During COVID only one of us could be with my child during treatments (which were always inpatient and for several days).
If I could change anything, it would be this. My younger daughter, always felt left out of everything. I always felt torn as a parent. If we could have surrounded our child with the people who love them during hospital stays, and not just on the days when they were home, I would have done that.
Remember that siblings and grandparents, aunts and uncles are worried too. Choose one family member to keep the others informed and you won't have to answer 20 texts.
I ALLOWED MYSELF TO BE VULNERABLE
Being vulnerable helped me to create a support group of people I could count on. Family, friends, the medical staff and other moms in the NICU were my support system.
EXPECT THE UNEXPECTED
The thing about support systems is that you never really know who will be a part of it until you're in the thick of things. Some people you expect to be there, won’t. And people who you would never expect to give you more than a fleeting thought or prayer, will show up and stay.
My very close family was there for it all. My husband’s brothers and sister showed up. Our close family friends were there every step of the way. The hospital staff, the nurses, aides, child-life… they became extended family. But, the most important support system was my relationship with my husband. We communicated everything: our hopes, our expectations, our fears, our frustrations… everything.
REMEMBER TO LET IN COMMUNITY
It was important to surround myself with a community of people who understood what trauma looks like when having a baby at 22 weeks. Now I get to make a difference and give perspective from a parent/caretaker point of view.
YOU WILL MAKE NEW FRIENDS
An unexpected side effect of having a kid in Stony Brook Children’s Hospital is the friends you make. As my child was coming close to the end of treatment, I found myself feeling a little sad that I was not going to see the extended family that grew around us in the Peds/Onc unit.
Being a member of FAC was the catalyst for me to become a Ronald McDonald House volunteer in the Peds Family Room on Friday nights, which has become one of my favorite nights of the week.