10 Things Parents Need to Know After Diagnosis
My child, Jake, was diagnosed with a rare, very aggressive brain cancer in November of 2007. After three years of chemotherapy, radiation, stem cell rescue, three new tumors, and Hospice, he was declared cancer free. He is an inspiration to us all, and I am proud to call myself his mother. I hope what I learned from my experience will benefit you and your child.
Jake Dambrauskas
1. Cancer can come at any age.
My son was diagnosed with a very aggressive Brain Cancer called Atypical Teratoid/ Rhabdoid Tumor, (AT/RT) at the age of 13 months. I recently met a mother whose son was diagnosed with AT/RT at 15 days old. You will see children of all ages fighting this battle, but the eye opener for me was seeing the disproportion of funding and education of childhood cancers to the number of children being diagnosed with cancer.
2. You can and will get through this.
Once you hear your child has cancer, a million thoughts and emotions swarm in your head. Next thing you know, you’re trying to learn about central lines, dressing changes, and terminology. On top of that, you have paper work to deal with. It can all become overwhelming, and you start to wonder if you’ll be able to do it all. The answer is yes. The things you’ll do out of love and fight for your child is amazing. I nearly fainted the first time I watched a dressing change, but soon I was replacing dressings, flushing the lines, and even giving my son medicines through his central line. It may take some time, but you’ll get there.
3. Cost your primary insurance doesn’t cover, Medicaid will.
Finances are one of the last things you want to think about when your child is newly diagnosed. However, one of the first things you need to do is apply for your state’s Medicaid program. I wasn’t aware that you could use it as a secondary insurance even if you already have a primary insurance, but when my son was put on long-term disability months after we started treatment, he was automatically placed on the state’s Medicaid. All the emergency room co-pays, specialist co-pays, and hospital stays add up, so the extra assistant helps tremendously. If your child gets denied, search for foundations that will help you determine eligibly.
4. People want to help you, so accept it.
It might be uncomfortable to receive assistance for foundations, friends, and family, but you should take it. My family set up a benefit account in my son’s name where people could donate money to help with medical expenses. They asked people to donate money to his account in lieu of giving toys, flowers, or stuffed animals. It is still hard for me to accept people’s generosity, but I can’t express enough how helpful it has been. Keep in mind, it is not just about the financial help but all the help that goes along with it. If people want to visit, make you a dinner, or clean your house when you are gone, let them. I am sure if the tables were turned, you would want to help a family you care about.
5. Don’t forget to take care of yourself.
Watching your child go through treatments can be very emotional, and you many not want to ever leave your child’s side, but at times you should. It is healthy for you just to have some “me” time. It is good for your sanity and wellbeing. Whenever you feel like the walls are closing in on you, find a moment to go for a walk, get some fresh air, or just take a nice bath. Your child is depending on you to be at top of your game.
6. Try not to show your emotions too much in front of your child.
Your child is looking to you. They feed off your positivity and it helps them with their attitude. The last thing you want is to have your child know how scared you really are. There were many times that I just wanted to cry, so I would ask a nurse to sit with my son. I would go to a restroom, get it out, and then return composed.
7. Pay attention to your child’s special needs
Children can respond differently to their treatment. Since you know your child better than anyone, be aware of what your child may need to during the process. For example, your child may lose his appetite. This is very common so don’t be surprised if he child needs the extra help. A Nasogastric Tube (NG tube) could be used to help maintain their calories. Some children ask for the tube so they can take their medications without tasting it. Talk to your doctor to find out what can be done.
8. Write about it. Read about it.
One of the things I highly suggest is to journal or start a blog. I find it very therapeutic to write my feelings, vent, or just give an update to my family and friends about what is going on. It’s also nice because your family and friends can leave messages. There are many times when reading those messages was the highlight of my day. It is also beneficial to read the blogs of families and learn from their experiences.
9. Be aware of your environment.
Know your child’s medications, the chemotherapy drugs, and the procedures. Keep a little cheat sheet or journal to refer to. I’ve also used my blog updates to find an exact date of when my son had a procedure done. Do not be afraid to ask questions or speak up. On one of our many emergency room visits, the nurse almost gave my son Motrin to control his fever, but I stopped her. As you may or may not know, Motrin is a blood thinner, so chemotherapy patients should avoid taking ibuprofen. Even though the people treating your child are in the medical field, cancer is not always their specialty.
10. Never give up hope
That last thing I can’t stress enough is to never give up hope. You can read all the statistics you want, but I know from personal experience that each case is very different. Do not be discouraged by the numbers. My son was given a 10% chance of survival and he just turned 4. So stay encouraged and never give up hope.
Jake relapsed in July of 2008 with 3 new tumors. He entered Hospice in September of 2008 but continued to improve. In March of 2009, they got the news that the tumors had disappeared. He has been cancer free every since. Visit Jake’s Caringbridge page.