It all seems like yesterday. I can recall rushing to the hospital on January 7, 2010 after being called to pick my child up from preschool. His breathing was shallow, his skin tone was blue, and he was lethargic. This was the day after my son had received an all clear from his pediatrician for what was believed to be round pneumonia. This was the day that the hospital realized that the round pneumonia was actually a tumor that had just burst. This day was the first day of my new life. A life where cancer is the first thing I think about each morning and the last thing I think about each night.
The month of January was a whirlwind. Our journey with cancer began with an emergency room visit that lead to an ICU visit. We were then faced with a major surgery to remove a rare tumor, a devastating visit with the oncologist to obtain a heart-breaking diagnosis, and months of chemotherapy, radiation and regular visits to the hospital for check-ups and blood work. In the beginning, there was little time to process everything. So much information was being shared and it all seemed to go in one ear and out the other. Looking back, there was much that I wish I had known from the start. Now is my opportunity to share the knowledge that I have gained.
Pray, Pray, and Pray. Then, pray some more
You are about to face possibly one of the biggest challenges of your life. Now is not the time to leave your faith behind. Jeremiah 30:17 says that God will restore your health. You must believe this with all of your heart and know that with God, all things are possible. When you find yourself wavering and getting upset with God, and you will, remember to pray, pray, and pray. This will allow you to find strength in God and His word.
During this challenging time in your family’s life, you must remember to stay positive. No matter what anyone says, you must stay faithful and know that God wants your child to be healed. Keep your thoughts positive and believe with all of heart that all will be well. When you believe, you will receive. (Mark 11:24)
When our battle began, many of our friends provided positive books for us to read. I found these books to be extremely helpful when times got tough. Two books that helped keep me strong when I was struggling were, Stronger than Cancer by Connie Payton and Healed of Cancer by Dodie Osteen. You should carry these around, so you can reference back to them and stay encouraged.
Write everything and remember everything
As a parent dealing with cancer, it is important that you keep a spiral or journal with you at all times, and write everything down. From day one, you will be learning about new terminology, procedures, and medications. When you do not understand something, ask for clarification. It is crucial that you know your child’s file better than anyone in the hospital. You must be able to recognize when things are right and wrong. Something as simple as when your child should receive a dose of medicine and how much they should receive is essential for a parent to know. Don’t leave anything up to the nurses and doctors. Remember, no matter how good they are, they are still human and humans make mistakes. Know everything and be your child’s greatest advocate.
Research, Research, Research
After diagnosis, it is time to research the illness. You should know everything about the illness, but remember to take care when reading negative statistics. You do not want anything you read to make you lose faith and become negative. A surgeon, whom I admire dearly, once pointed out that it does not matter what statistics say because even if the statistics are great, that does not mean that your child is on the good side of the statistics. You must focus on your child because no child is the same. So in other words, do not allow your mind to become consumed with negative thoughts simply because you come across something negative. God is in control and you must remember that.
Utilize available resources
There are a million resources available to cancer patients and their families. Take time to research these and familiarize yourself with them early. You social worker should be your best friend because they know about what’s available to help you make this journey as easy as possible. One major resource that I did not learn about until about six months after the start of chemotherapy was that hospitals have in-house charities to assist families with paying hospital debt. There is also assistance that can be obtained for parking, meals, travels, and so much more. Many of these resources are listed in the binders and manuals that families are provided with at the beginning of care. After the initial devastation sets in, read the manual. It definitely helps.
Keep a binder with all of your child’s medical information
Once a child is diagnosed with cancer, they will have to deal with it for the rest of their lives. It is important that you keep copies of all of your child’s medical records to assist with their care. Even if your child is cancer free, there may come a day when they need to share their medical history. Giving your child that binder will not only tell them their testimony, but will help them understand all that they have gone through.
Hydration is key
Anti-cancer drugs can be extremely hard on the body. You never know what side effects your child will have to the drugs until after they have already received them. One of the drugs given to my child ruined the lining of his bladder, and caused him to bleed and have extreme pain every time he urinated for about two weeks. The cure to this was simply administering his medications differently and hydrating him for at least 6 hours prior to receiving chemotherapy. Of course there was no way to know that the chemo would affect him the way it did, but what I did learn is that hydration is important.
Keep the norm as much as possible
It is important that you keep your child’s life as close to normal as possible. Of course the term normal will never take on the same meaning as it previously did, but the key is to make sure that you allow your child to still be a kid. Do not burden your child with unnecessary worry, and never treat them as if they are sick. If you do, they will be sick. Make sure that you do your best to keep your child active. We would take our son for rides on his IV pole, on the bike, or in the wagon if he was not feeling well. Yes, we were only walking the halls of the cancer floor, but we were staying active. Our first chemotherapy visit was filled with days of living in our pajamas, sleeping all day, and feeling sad and sick. We finally decided that no matter what, we would set a schedule and keep up normal activities such as eating breakfast, brushing teeth, getting dressed, visiting the play room, doing puzzles, painting, watching movies and bathing. It is easy to get withdrawn while in the hospital. Keep your child busy. It will keep them happy and help them heal.