A local organization, Roc Solid, asked several parents lately to write a letter of encouragement to parents and families of newly diagnosed patients. I have included my letter below so that hopefully it will help parents and families in other parts of the country and world.
Warning when I reference 8B, this is specific to CHKD in Norfolk, VA.
I am very sorry your family has to walk this road, but you and your child are going to meet the most caring, thoughtful, and helpful people.
From the day Jesse was diagnosed, we have tried to make this an adventure. Our positive attitude about going to the hospital has made going for treatments and clinic just a normal event to her. She views visits to the hospital as going to see friends. She loves her doctor, nurses, child life staff, and others we have met along the way.
Radiation to her was just going to get her picture taken. She was so comfortable with the staff that she would happily climb up on the table and pretend to sleep while the ansetisologist gave her the medicine.
She had to have her central venous line replaced. Jesse was so comfortable with the surgeon the second time that he asked if we had pre-medicated her. And you have that option to request pre-medication for your child when they are facing a surgery. If your child is anxious, please use it. It will make things much easier for them.
Our doctors are wonderful people. They want the best for Jesse, and will go the extra mile for it. In our case, our doctor sent her scans to St Jude’s for a second opinion on surgery. We didn’t ask him to, but he did that so he could give us every available option.
The nurses and staff in clinic and on 8B are wonderful resources. They have made my daughter’s visits and inpatient stays full of laughter and fun. They take the time to give her attention and love, from racing wagons to playing hide-n-seek. My daughter often asks in clinic, “When are we going upstairs?” I actually have had her get very upset with me when she found out we were going home.
Please remember the nurses are here to help you. They want the best for your child too. Ask them if they have tips or tricks for handling treatments or minimalizing some of the chemotherapy/ radiation/ immunotherapy side effects.
Child life is another fantastic resource. They are there to make this easier for your child. Use them. If your child is anxious about any treatment or procedure, ask for a child life staffer. They have so much knowledge on how to make treatments and procedures less scary. They also know how to make inpatient stays fun.
They are also a fantastic resource if you have other children at home who you are not sure how to break the news to. We talked at great length with child life about how we should tell Jesse’s sister, and how we could make sure she didn’t feel left out or forgotten in all of this.
If you can, let your other children be involved. Jesse’s sister will sit with her while she undergoes a tape change (hands washed and mask on to protect Jesse from germs).
Remember your other children. Jesse’s sister has felt very left out on occasion because she thinks Jesse goes to the hospital to have fun (she is under 5 and doesn’t really understand). My husband and I make sure that her sister has a special treat, like going out to dinner, when Jesse is inpatient.
Keep disciplining. My husband and I treat both of our girls the same. And for them having this constant gives them stability. Even if Jesse was an only child, I would keep disciplining. When she knows what I expect of her, life is much easier for the two of us. Taking the time to teach her right from wrong, lets her know I love and care about her.
I have walked out of hospital room on her before when she is yelling at me and refusing to listen. I don’t go far, but it’s enough for her to get that I will not tolerate her yelling at me.
Try to keep to your pre-diagnoses schedule. Having this constant will help your family to feel better about what is going on. There will be times, especially when white blood counts are low or during cold season, you won’t be able to go as you have before. Don’t get discouraged, just plan to go places you can when they aren’t as busy. Also talk with your doctor about what in your schedule can stay as it has. They will be able to give you the best information.
If you are tempted to look online for information, please be careful. Anyone can write anything they want on the internet. Ask your doctor for a website they would trust if you feel that you need to look online.
Above all trust your doctor. You are going to get a lot of advice from many places, but they know what they are doing. If you decide to try a different treatment for your child than what the doctor has given you, ask the doctor first. They might be able to give you information on that treatment.
If you have family and friends who are full of advice you aren’t comfortable with, you can tell them “Thank you, I’ll talk with his/her doctor about that.” Or you can say, “Thank you, I really appreciate it, but we are going to follow the protocol given us by our doctor.” You will get a lot of advice from people who mean very well, but always remember you make the decision on what advice you want to follow.
You are your child’s advocate. It is okay to ask what nurses and doctors are doing when they treat your child. No one will be upset that you want to know what they are doing. Never be afraid to question anyone.
If you aren’t sure of what someone is doing, ask them to fully explain it. Do not be afraid to ask questions, and don’t let someone leave the room until you fully understand what is going on.
I would also suggest carrying a tub or suitcase in your car with some of your child’s favorite things or new toys they get to play with at the hospital. For Jesse this box has been a great distraction. I think sometimes she looks forward to the box the most.
If you are overwhelmed by the amount of gifts your child might receive, put some away for a rainy day. I did that with several gifts. Jesse received those put away gifts when she underwent her stem cell transplant. And opening gifts makes any kid’s day 🙂
Also pack their favorite foods if you can. There are refrigerators upstairs on 8B. Use them. Having food they enjoy might make your child more willing to eat and happier.
The nurses on 8b are a great resource for nearby restaurants if your child loves a certain restaurant.
If you decide to learn to handle your child’s tape change, ask for Skin Protect and how to apply it. This and detach-all have made tape changes for Jesse completely different. She only fusses a tiny bit when I use the cloro-prep to clean around her line.
If you use detach-all let it sit for 15 to 30 minutes because it makes the removal of tape much easier.
If your child receives chemo that can cause mouth sores, ask for magic mouth wash if your child can rinse with mouth wash. With the same chemo ask the nurses if they have any tricks for making this easier to deal with.
If you aren’t a fanatic hand washer, become one. This will help cut down on germs and getting fevers.
If you have to be in public during a time when your child’s white blood count is low, have your child wear a mask. Use the store sanitizer wipes, or carry travel Clorox wipes, to wipe down any carts you and your family might handle. Also wash your hands (or Purell) them when you get back in your vehicle.
I use a ton of Clorox wipes and Purell. I wipe down the kitchen and table every meal. Plus I clean the entire house once a week. I carry a bottle of Purell in my car and purse. Anytime we get back in the car or I handle money, I Purell my hands and the girls.
Get a flu shot. Ask your friends and family who will be near your child to get a flu shot. If someone decides to get the flu mist, ask them to let you know since this is the live weakened virus. You will need to talk on the phone or computer for 2 weeks to avoid contact while their immune system gets used to the flu virus. This is for your child’s protection so they don’t get the flu.
Do not be afraid to ask your family or friends for help. Do not be afraid to tell them if they are sick to stay away for 48 hours. They love you and will understand.
Keep a positive attitude, even when it is hard. If your child sees you being positive, they will respond the same way. And for Jesse, she seems to be happier when I am being positive.