“We received two pieces of advice that helped us greatly. The first came on our first night in the hospital just after diagnosis. It came from the father of a child who had finished treatment. He said, ‘It gets better.’ The second piece of advice came from a man who had experienced cancer himself. He said, ‘You will have ups and downs. You will think things are going really well, and then you will get seemingly devastating news. Be ready for that.’ These two pieces of advice, considered together, were very helpful. The fear that comes with a cancer diagnosis is the worst. However, it does get better. You find a new normal, and you actually learn from the experience to appreciate so much more than before. If you keep in mind the second piece of advice, you will prepare yourself for the ups and downs of treatment. Things will go well and then, all of a sudden, your child might have bad results, catch a virus or have a bad reaction to a medication. You are not in control as much as you thought, and you have to acknowledge that ups and downs will happen no matter your best efforts. However, there is a lot of hope to be had, and you can only take it one day or even one hour at a time.”
“The first 24 hours are the worst. One of our amazing nurses told us this at about 2 a.m. on our first night. She was absolutely right. Diagnosis and having your world flipped upside down are the worst, but as answers and plans develop, it becomes much more manageable.”
“You are not alone. It will feel like you are, but you’re not. Lean on people. Ask for help. Don’t take it all on yourself. Educate yourself. Surround yourself with people who you can count on. Take care of YOU because your child needs you now more than ever.”
“Try to throw worry from your mind.”
“It’s going to be difficult, but you CAN get through it. Take every opportunity to celebrate the good days and find the silver linings in the bad days. Be strong for your child, but also take care of yourself as much as possible. You won’t be much help to them if you’re not taking care of yourself too. And don’t be afraid to ask for help!”
“Take a deep breath and release. Now focus hard, or the best you can at that moment, to smile and say, ‘okay, let’s get them better and what’s our next step?” You’re scared and your child needs you to be strong, and don’t show your fear in front of them. I spent many times outside walking our dog; in the shower I would cry. I always was encouraging to Wyatt and answered all his questions honestly. Buckle in so you don’t fall.”
“Have a family member/close friend be the representative to field the calls, messages, posts, etc. Keeping up with all of that was intense at times.”
“Organize a meal train, gather gift cards for gas, hotels, etc. if the family will be needing to travel or have overnight stays.”
“Gifts for your child make good distractions, but you should also request gas cards, gift cards from restaurants near the hospital, grocery cards, babysitting, and outings for siblings. At first, you may want to tell people not to visit you at the hospital. It may be too much to have visitors. However, having someone to visit with you during long hospital stays or procedures can be helpful. You may want to designate someone to communicate these needs at the beginning because it’s hard to do this for yourself.”
“Ask for cards of encouragement, and/or have a fundraiser to help the family with medical bills.”
“Rides to and from the hospital, meals and monetary donations can also be a huge help.“”
“Gift cards/gas cards were very much appreciated, especially during the weeks without work. Simple groceries, toiletries, even a cleaning service at the start of a diagnosis is an amazing idea… people would offer but in reality, you don’t want your friends coming over to clean your house or bathroom! Meal trains were a complete godsend to us.”
“You are not responsible for other people! Many people will want to ‘help,’ but you do not have to accept an offer if it is not actually helpful to you. You also are not responsible for taking care of other people’s emotions about your child’s illness. With that being said, please allow people to do things for you.
- We allowed our friends and family to start a Go Fund Me account and Amazon wish list for us. A small army also deep cleaned our home and van and took care of the yard work.
- We allowed our closest family and friends to watch our older children. Many people offered, but consistency and normalcy was our goal for them, so we did not allow strangers or less well-known friends to care for them.
- We accepted a very limited number of meals as cooking has always been something our family really enjoys. Meal trains were stressful for us due to various diets and timing of delivery, but MANY other families have found them very helpful.”
“Make your room feel as much like home as possible. I asked medical staff to have heavy conversations with me in the hallway. I played her favorite music and acted like a goof to make her laugh as much as possible – a good spirit got us a long way. I encouraged guests to try to act as normal as possible as she would respond to how they were acting. Parents, bring your own full-sized bath towel, robe and slippers to avoid awkward moments with the nursing staff.”
“You will certainly have favorites and less-than-favorites. We were tempted to think this was ‘being mean or judgmental,’ but you will not love every single person who interacts with your child and that is just fine.”
“I kept a bag packed and a list of the things I would need to grab in an emergency. Have a stock of quick snacks to bring with you. I had a warm blanket I kept in my car because the hospital was so cold for me I also had a small bag of entertainment and snacks ready in the car in case we had a long clinic stay or an emergency ER visit. This made the stay a lot more comfortable.”
“Hospitals are not hotels: ask for a tour! We didn’t realize until several months into our journey that our unit had a laundry room! This was a real game-changer for us.”
“Get more information about the Ronald McDonald House for meals. We got so sick of hospital food and were never really told about that. I have shared with many other families and they were also unaware that they were able to get home-cooked meals from there.”
“Help with tasks similar to what you would do at home. We cleaned our room ourselves because again, it helped us feel a little more normal. Pack a bag of normal or maybe even slightly better than usual toiletries. A family member brought us a bag of nice shampoo, body wash and other items during our first hospital stay. It was about the best thing for her at the time.”
“Ask for a white noise machine or bring one. Hospital rooms are loud. Get out! We are terrible at this one, but it helps to get out of the room and hospital. A little fresh air does wonders! Most hospitals offer free or reduced parking for families and their visitors – be sure to ask!”
“We went exploring of the hospital when they were feeling up to it, just to get out of the room.”
“It’s hard to plan in advance because you never know when a fever or a complication will keep you in the hospital longer than you expected. My advice would be to pack extra clothes and learn to roll with the punches.”
“The sleeping situation: the pullout couches are not comfortable. Just accept that. We have found that two sleeping bags, asking for extra pillows and bringing our own comfortable blanket from home make it a little less awful. Order lots of food. It doesn’t cost extra to order the max amount of food. Children (especially little ones) don’t eat as well in the hospital so having a variety of options is helpful. Parents can eat the leftovers to help save money. Do what you need to do to comfort your child. We both spent many hours holding our child in the recliner. Most rooms have mini refrigerators and all units have nutrition or family rooms where families can keep food. Asking people to bring or packing homemade food really helps to feel a little more normal (and a lot less bloated). Allow yourselves to indulge! We allowed ourselves to indulge in fancy coffee, take-out, naps, long showers and more TV than we usually would at home.”
“Our family focus quickly became everything pediatric cancer awareness, research and funding. We tend to take our child’s health for granted until faced with something like this. Your family will be strong together and fight together. The road is a long and difficult one, so remember to partner together, even when you’re upset and/or frustrated”
“In good ways and bad. We’re more cautious yet at the same time, we want to experience life to the fullest. We’re more grateful to have each other and we spend more time together. We respect each other’s strengths and we help each other out with their weaknesses.”
“If someone would have told me that cancer would actually make my family better, I would have been very angry at them. However, cancer puts everything in perspective. Nothing matters more than your family, and everything you thought was important quickly loses importance. You quickly become grateful for every moment you have, and this is actually a gift.”
“In every way possible. We don’t focus on what was lost but rather being in the present moment and placing more value on time together and making the most of this life experience.”
“Absolutely, in every way, shape and form. We no longer care and worry about small petty things in life… we try to focus on day to day. I as a parent feel completely torn down and I am stronger for it… I take a lot less from people, meaning I am quick to fire back if something bothers me or is on my mind… our faith has gotten stronger. You no longer feel like that diagnosis happens to everyone else but your family.”
When my son was diagnosed, CaringBridge was the best resource. Now, social media has a larger presence and Facebook seems to be a good way to communicate. People will be curious because they care. Find an outlet to share as you can as this helps reduce the amount of phone calls and texts that can be extremely difficult to keep up with.”
“We used a family Facebook page. That way I wasn’t on the phone all night long updating and answering questions.”
“Facebook personal group page.”
“Have a friend set up a Facebook group. Find a platform such as CaringBridge to copy posts to those that aren’t on Facebook.”
“Facebook. Whether a private group or a public page, Facebook has made communicating and updating family and friends easy.”
“People want to know, and a lot of time are afraid to ask, so maybe just create a Facebook page. At first invite a few people then have them invite more that they know who might want to stay informed and maybe assign someone other than you to manage the updates because you have more important things to focus on. They will love to help.”
“That it was going to be hard. But that you will come out on the other side of this and you will be stronger because of it.”
“Keep a journal of people’s names, job titles and experiences. We have nominated several of our medical team members for various awards and given them small gifts for Christmas (note: gifts are very limited at hospitals so keep it simple).”
“That the effects from the chemo/steroids were temporary. Our daughter stopped talking, stopped smiling, just sat on the couch and stared at the TV and didn’t walk for almost a month. We thought her sparkle had gone away. After that horrible phase, her sparkle returned.”