“One of the hardest things we learned to do that has turned out to be one of the best: live in the present. Enjoy this moment with your child. We learned to live life to the fullest. This disease brought us to an awakening to fully realize how precious life is.” “It is difficult to live in the moment, to change the way you think, but it will help and it will change your life.”

“We got through it by praying a lot. We asked everyone we knew to pray for our daughter. At first I did a lot of reading, but there came a point where I just put it in God’s hands. That helped me get through our most difficult moments.”

“Attend a support group if there is one in your area – it was so good to cry and laugh with people who were going through the same thing.”

“Keep a notebook with you at all times and write down questions as they come to you. You may find that a question will pop into your head during the oddest times – and you want to remember what those are.”

“Get good books to read in the hospital – this again is something that someone could do for you. I read a Janet Evonovich series during Luke’s hospital stays and they saved me. I was able to lose myself in something else while Luke was napping or during the night when I couldn’t sleep. I enjoy reading light books that made me laugh, but people should read what they like.”

“Be sure to ask questions. Do not be afraid to do so. On one occasion about a year into treatment our daughter was getting fevers and one of the doctors thought it was a fungal infection and the other thought it was due to the medication. We were really glad that we asked a lot of questions about the causes of fevers and the treatment options before we went on. Ask a lot of questions and know your options.”

“The first thing I did to try to gain control was to avoid thinking about the long term. I forced myself to only worry about getting through that day. At the end of every day when I said good night to my son I was thankful we had the day behind us and I tried to look at surviving that one day as an accomplishment.”

“I did not read about those things that might never happen or things I was not ready to deal with.”

“I got as much information as I could about the protocol, the science and the medications. To me knowledge is power.”

“Every night after all of the children were in bed I cried with my husband. Eventually we stopped crying every night and the despair was replaced with hope.”

“It’s a good idea to pack a bag for both you and your child and keep it ready and in the car. If you have to go to the hospital unexpectedly, the last thing you will want to do will be to pack.”

“Very few, if any, of your family and friends will understand how difficult and long the treatment is. Some of the people you know will be very supportive but others may just disappear from your life because they do not know how to handle it. A lot of people thought it was a short course of treatment and we were done. They had no idea what was really involved. It is easy to feel angry and hurt by all of the people in your life who don’t understand what you are going through, we all have. Try not to let it eat away at you. Try to let it go and focus on those that are supportive and want to help. Don’t harbor bad feelings, it won’t help you. We have met some wonderful people and become even closer to our family and friends. We are cemented to everyone who helped us see this through.”

“At first we tried to figure out the meaning of the fluctuations in our daughter’s counts. Over time we realized that all of the counts go up and down and that is what is supposed to happen while the child is on chemo.”

“When our daughter’s counts were low and they took her off treatment for the first time we were horrified. We thought it meant things weren’t going well. We later learned that all of the kids go off treatment for low counts at times and that just means that the chemo is working. By taking the kids off chemo when their counts are low they are ensuring that the kids don’t get more chemo than their bodies can handle.”

•”You DO have the strength to get through this! At first it was so overwhelming; I thought I would never be able to handle it all. But day-by-day (some better than others) you find yourself moving through this experience. Be kind to yourself. You are experiencing one of the greatest trials a parent can experience; pamper your body and spirit.”