Advice From Our Parents

Here are some sample questions that you may want to ask before surgery or a procedure:

• How long will the operation or procedure take?
• What are the risks involved?
• What kinds of medical equipment will be used?
• What does that equipment look/sound/feel like?
• What will happen just before the procedure?
• What will be expected of my child?
• How long will my child have to go without eating beforehand?
• Is there any prep that is required of my child before the procedure? Any special dietary restrictions the night before?
• Is there any medication that should /should not be taken prior to the procedure (or the days leading up to/ or following the procedure)?
• Will my child be awake during the procedure?
• If so, how long will my child be awake before the procedure?
• What will be expected of me?
• Will I need to leave the procedure room?
• Will I be with my child when he/she wakes up?
• How will my child feel when he/she wakes up?
• Will my child be in pain? If so, how will it be managed?
• How long will it take for the anesthesia to wear off?
• How long will my child need to stay in the hospital?
• What medications will my child need to take?
• Are there any side effects of those medications?
• How long will it be until my child can go back to school?
• Will my child need to restrict his/her daily activities?

Here are some sample questions that you may want to ask about a diagnosis:

• What type of illness does my child have?
• Does this illness have a cure?
• What are the long-term ramifications/future predispositions that come with this illness or come about as a result of the treatments and how will this be monitored or how can this be minimized?
• Is there any dietary/nutritional support that can help my child?
• How many patients have you treated with this type of illness?
• What treatments are considered the gold standard for my child’s illness and what other options do I have?
• Does this facility have access to all of these treatments?
• If not where are these treatments located?
• Are there other possible treatments that are not available at this facility?
• What are the pros and cons and side effects of these treatment options?
• Are these treatments covered by my insurance plan?
• Are there any more tests that need to be done before starting treatment?
• What tests will determine how my child’s disease responds to the treatment?
• How long will the treatment last?
• Are there any side effects associated with these treatments?
• What signs or symptoms should I bring to your attention to help you follow my child’s treatment and evaluate their response to treatment?
• When speaking with other healthcare providers, how do I describe my child’s condition/treatment? Do I need to alert the school of any issues relating to this illness/condition?

Take care of yourself first.

• Make sure not to miss opportunities for sleep, rest and nourishment. 
• Call on friends or relatives who are willing to provide you with needed breaks, a shower, a coffee, a nap or laundry. 
• Understand your own feelings about illness and hospitalization. You might be feeling very sad or anxious. It’s normal for patients, and families to experience these feelings after a difficult diagnosis, so try to be patient and accepting of your own and everyone else's feelings. 
• Identify your support systems, and ask how they can help you. Never be afraid to ask for help.
• Be familiar with the opening and closing times for all available food sources or stores in the hospital. 

• Brothers and sisters of your sick child have their own emotional needs. Siblings can feel left out, helpless, afraid and angry. When possible, it's important for parents to check in with their other children and create some one-on-one time to focus completely on them.
• Sibling’s feelings should be addressed and validated.  It is helpful to allow siblings to make choices about who they are going to stay with, and what they are going to eat, etc.
• When you can, try to carve out a family fun time when no one discusses medical issues. This can be as simple as a family dinner, game night or a day out. 
• It’s also important to keep siblings in the loop with brief weekly or nightly updates adapted to the developmental and emotional needs of each sibling. 
• The Child Life Team can help you to frame and deliver information for your children at home that is truthful, but in ways that can calm and soothe worried minds.

If you know that you are coming to the hospital:

• Know beforehand, when possible, about your insurance coverage.
• Plan for a few days longer than you may be told–tests and procedures are sometimes unavoidably delayed.
• If you will be having multiple and possible unscheduled trips to hospital, arrange back-up child care for your other children. Have a schedule, school clothes and other simple needs pre-packed for siblings in case you have to rush to the hospital.
• If you are sharing care with another parent or caregiver, decide your schedule in advance and try to keep to it.
• If you will be sharing care, keep a log and leave notes as to what has happened and who has been in the room.
• If you can’t see the name tag on a professional who is entering your room (the tag may be under an isolation gown or just turned over by chance) ask who you are speaking to.

Expecting many visits or trips to ER? Pack an emergency bag in advance and have it ready. In your emergency bag pack:

• A change of clothes for you and your child 
• Spare meds if you know the hospital does not carry a specific medication and make sure they are not near the expiration date. 
• If your child requires special medical equipment, pack spare devices for example, a mickey button or g-tube kit. 
• Pack their preferred personal hygiene items. 
• Start a list of current medications and treatment dates (you can keep them in Notes, or on Google Docs on your phone). You will be asked for this again and again so it’s easier to be ready.
• Keep a charger that fits your phone in a pocket book or case that is packed for emergencies
• Pack a notebook, pen and dry erase marker (for the dry erase board in the room).

Your very young child will take their cues from you. When you breathe and relax, they will too.

A soft comforting voice, soft music, lullaby sounds and a gentle touch are helpful and soothing during uncomfortable medical tests or exams. Favorite toys or diversional items that distract or amuse can greatly decrease the sense of wait time or discomfort. Toys that are active and light up can be very helpful. Read to me board books also soothe and help while you wait for treatments.

• Young children have a different sense of time than we do. Wait until 1-2 days before admission to talk to your toddler. 
• Keep explanations brief and language simple.
• Reassure your child that you will be with him whenever possible.
• Bring familiar items from home (e.g., blankets, stuffed animals, sippy cups, music).
• Allow your child to choose his/her favorite things to bring to the hospital (this will give the child a sense of control).
• Be patient with your toddler (it is not uncommon for young children to regress and become fussy or clingy).
• Crying is a natural coping response at this age. 
• A pretend doctor’s kit and a teddy bear provide good play experiences for children to rehearse things like “take a listen”. “Going to the doctor” story books can be read to your child. Start a few days before a hospital visit.

• Provide simple but honest explanations for medical events. “The doctor wants to help make the pain in your tummy go away, so she needs to take a quick listen.” Blowing bubbles or pinwheels help with relaxation and distraction. Singing a song or telling a story help with calming and wait times. 
• A pretend doctor’s kit and a teddy bear provide good play experiences for children to rehearse things like “take a listen” or “make a quick a poke”. “Going to the doctor” story books can be read to your child as much as a week before. 
• If your visit is planned, talk to your preschooler 3-5 days before a hospital stay (it is important to give them enough time to process the information, but not too much time to allow for misconceptions to develop)
• For unplanned visits to the ER, use simple terms and concrete explanations without too many details, such as “I think the doctors in the ER can help you feel better.”
• Keeping a bag packed with a few diversional special toys that you can  grab on your way out, can be very helpful in waiting rooms.
• Use words for body parts, and functions that are familiar to your child.
• During difficult or uncomfortable procedures, young children often imagine they are being punished for something they did wrong. Tell your child that it is no one’s fault when we get sick or need the doctor or hospital. 
• Simple rewards for cooperation such as holding still during blood tests can help him/her feel accomplished and teach coping skills. Never punish a child for not cooperating. Find something to praise. “You held still for five seconds! Good job!”

• Find diversional activities that combine fun with challenge, such as “Find it” games (finditgames.com), pop-up books, glitter wands, music with headphones, iPad/iPhone/tablet games.
• Keeping a bag packed with a few diversional special toys that you can quickly grab on your way out, can be very helpful in the waiting room.
• Talk to your child openly, honestly and in simple terms (children at this age are more likely to maintain a trusting relationship if they feel included in the experience and part of the decision-making process)
• Have an understanding about anesthesia, pain, change in appearance, etc., to prepare for questions your child may have.
• Explain to your child why the procedure, surgery, or hospitalization is necessary. Discuss fears or concerns.
• Provide an opportunity to ask questions and express how he/she is feeling (e.g., what questions do you have about the hospital? What are you wondering about with your procedure?)
• Talk with your child about ways to share his upcoming hospital stay with friends.
• Teach deep breathing/relaxation in advance. Using a pinwheel or party blower can help. Explain that athletes use breathing techniques to do things faster and better. 
• Answer questions honestly. Use good websites to explain how the body works or what a procedure is. If medical interventions are routine for your child, help them experiment in advance when blood work or procedures are expected, to decide what coping techniques work best for them.
• Encourage expression and validate feelings.

• Encourage a teen’s participation in their health care. Encourage questions and taking part in decision making.
• Teach deep breathing in advance. Explain that athletes use breathing techniques to do things faster and better. Provide access to good education about how the body works and medical treatment.
• Some teens experience intense emotions that might seem like emotional regression. They might cry like a baby in your arms or insist on things they know are not an option, like asking, "to go home." They might throw a tantrum, curse, or say things they don't really mean.  A calm soothing attitude and voice can help to de-escalate difficult feelings.
• Always tell  the truth about what is happening and ask them if they want to be included in conversations with medical staff. Ask them their permission to discuss sensitive topics with staff, but remind them that some information is essential and then ask them to choose who speaks first, the teen patient or you. Give choices about everything no matter how small and give back some sense of control.
• For older teens, it may help to be honest about your own feelings of fear, grief and worry. It will help with communication and building of trust. Just be careful not to make them feel like you are asking them to comfort you. This could be very important because older kids might be afraid to tell you about a new symptom because they don't want to upset you.
• Adolescents may tell you they don’t need your help, but they do. Remain available for support and to encourage expression and validate feelings.
• Talk with your child's school to develop a plan for making up missed assignments (ask to speak with our hospital school teacher. Depending on your district, patients hospitalized for more than a week or two weeks, or with frequent hospitalizations, can get credit for hospital instruction. Teens can also take proctored exams while hospitalized.)
• During a hospitalization, when possible, allow a teen to bring technology that will help them stay connected to peers and activities they enjoy.

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.

NO

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.

VOLUNTEERING

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.