Your Child Has Been Diagnosed with Cancer. What now?

I am honored to be a member of the Editorial Advisory Board and to write the bimonthly Pediatric Cancer column for the new magazine, Touched by Cancer. Touched by Cancer is a free, bimonthly publication focused on helping anyone who has been touched by cancer and is being treated in central North Carolina. Their goal is to be a unique resource that provides practical information, inspirational stories and useful insight to those who are battling cancer and/or those assisting a friend or loved one through this difficult time. I am excited that its first issue was released on December 8th.

If you have been touched by cancer, in anyway... I encourage you to become a fan of the Touched by Cancer Facebook Page and tell your friends about this wonderful publication. It is a wonderful resource that is needed in our community.

The following blog entry is the article I wrote for the premiere issue of the magazine. The title of the premier issue was "When Cancer's Newest Face is Yours".

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Your Child Has Been Diagnosed with Cancer. What Now?

Life-altering does not even begin to describe what happens when your child receives a cancer diagnosis. Everything starts moving so fast. People are teaching you a whole new vocabulary you never wanted to learn. After my 8-year-old daughter, Colleen, was diagnosed with osteosarcoma in September 2007, it took me about six months to figure out how to organize all the new information and the new people in my life. Hopefully I can help you stay a bit more sane during this difficult time by sharing what took half a year for me to figure out.

Information sharing—Early on, you’ll find that you make a lot of phone calls. You call your parents and your siblings and your best friend and you tell the story over and over. It is emotionally and physically exhausting. You figure out very quickly that although everyone wants to be kept in the loop, you will not be able to keep repeating yourself over and over again. As such, several companies have addressed this issue. My personal favorite is CaringBridge (www.caringbridge.org). The company says it offers “free, personal and private websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.” The site is easy to create and can be as private or as public as you want it to be, allowing you the ability to share information with a few people or many. Some people find the journal aspect of the site therapeutic. Others ask a friend or family member to keep the site up to date. Those are personal decisions that the site has the flexibility to accommodate. You are welcome to take a look at our daughter’s CaringBridge site (www.caringbridge.org/visit/colleenmoore) to give you an idea of how we used it. I found it very therapeutic to write in it like a journal, so it may have more content than most.

Calendar—Buy a calendar. Preferably, you’ll want the type that not only shows the whole month but also shows a week at a time with more room to write. A chemotherapy schedule can be pretty complicated, so you’ll probably want to write the plans on the monthly section for organizational purposes. On the weekly section, you might find it helpful to record results of blood tests such as ANC (absolute neutrophil count, the white blood cells that fight infection) and other pertinent numbers that are relevant to your child’s diagnosis. Most nurses will share this information with you each morning after the daily blood test results come back.

Information tracking—Remember that you are your child’s best advocate. The hospital where your child is diagnosed may not necessarily be the place where he or she will ultimately be treated. And sadly, even in the 21^st century, medical information record maintenance and sharing is often slow and even occasionally incomplete. It may sound like I’m recommending that you document information that should be recorded by the hospital, and I am. In my experience, though, it saves time, limits stress and even occasionally prevents mistakes. For example, my daughter was allergic to many types of adhesives, so I personally shared this information with each and every nurse that aided her, because this was something that could be easily overlooked, and I wasn’t going to have her needlessly suffer through something that could be easily prevented.

You can track this information in a variety of ways, using a laptop, a handheld data phone or even a spiral notebook. Select the method that works best for you.

Examples of information that you may want to keep track of:

• Your child’s care team—names, roles and contact information
• Important numbers—your child’s social security number as well as the medical ID number the hospital assigns him/her
• Medications—names (brand or generic) and dosing instructions, including those prescribed both pre- and post-diagnosis. Each time you return to the hospital or clinic, you will be asked what medications your child is taking, including those the hospital prescribed.
• Surgical history—again, this is both pre- and post-diagnosis, including the surgeries undergone at that hospital
• Drug allergies—pre-existing as well as those discovered during treatment
• Other allergies—It’s not uncommon for children to develop adhesive allergies along the course of their treatment journey. If you discover this problem, document the brand of adhesive along with the reaction.
• Instruments used—If a port-a-cath is surgically implanted into your child’s chest, you will be told the appropriate size Huber needle to use when the port is accessed. This is important to share with the nurse when the port is accessed prior to chemotherapy.  
• Discussions—There will be so much information exchanged that it’s all but impossible to remember everything. Write down information that you learn from the doctor (or members of the treatment team) as well as questions that you need answered.

Assign a “project manager”—Everyone you know will begin to ask how they can help. To best address this concern and genuine willingness to help, it helps to have a project manager. This person should be someone that you are completely comfortable with, such as a best friend, sibling, parent, etc. You know… the person that you talk to every day.

Each day, during daily conversation, share openly regarding your needs. The project manager will collect that information and assign items to those who offered to help. This works well because you’ll have people you barely know offering help out of habit, so all you have to do is give them the contact information for your project manager. This will relieve the pressure of everyone involved because now you don’t have to come up with a task off the cuff, and they can back out of what may have been an unintended reflex of a response gracefully. If that person genuinely wants to help, the project manager will be able to have a more meaningful discussion regarding his or her availability, skills, etc.

Accepting and organizing help—If a sink is clogged, the lawn needs to be mowed, the dog needs to go to the vet or your oldest child needs a sports physical, then these things should go on the list you supply the project manager. Yes, I realize that you and your spouse are capable of doing these things and that this type of help is hard to accept. Please remember, however, that most people talking to you feel helpless. You are literally living their worst nightmare. They want to do something but don’t know how to help. Allowing them to mow your grass, unclog your drain or take your dog to the vet (and yes, maybe even pay the bill) will make them feel like they have helped you tremendously. And let’s face it, they have! Learn to accept and appreciate help (and by the way, they are all not expecting thank-you cards). Recognize that your other child will get through this even if they spend more time with the neighbors than they do with you for a while. You have a lot of stress and have been given the most important job of your life: to be your child’s advocate during the hardest journey they (and you) will ever go on.

There is a fantastic website that was developed by the LiveStrong Foundation, www.lotsahelpinghands.com. It is used to organize well-meaning offers of help for meal delivery, rides, visits and other action items. My suggestion: Have your project manager create a community for you on the site and then serve as the administrator and put as many of the suggested “to-do” items as possible from the main site onto yours. As people offer to help, the project manager can get their contact information and/or direct them to the website. There they can then sign up for a specific job. Alternatively, if your project manager has the time and feels comfortable, he/she can call people and assign them tasks.

In-person support—Check with the hospital where your child is being treated to see if they have a support group and join it! Establishing relationships with parents that are going through similar experiences can be helpful. I found that knowing the name of the woman at the ice machine at 2 a.m.—when we were both in our pajamas and our children were having a tough night—was much better than standing next to a complete stranger. Sadly, I had both experiences.

Online support —Although there a lot of online resources on the web, be aware that not all of the information you read is accurate. Much of it, in fact, can be inaccurate and scary. The premier online support group site is located at the Association of Cancer Online Resources’ (ACOR) website. In its support and resources section, you will find “credible websites and cancer-related resources created by patients, caregivers, advocates and professionals.” I found the most valuable part of the website to be the pediatric cancer mailing lists. With a specific mailing list for more than 20 different types of pediatric cancers, there is a high chance that you will be able to become part of a community of caretakers and professionals that are very familiar with the specific type of cancer your child has been diagnosed with. This type of community can be a great source of information when dealing with a scary new world for both you and your child. I encourage you to introduce yourself after you log in. I believe you will be pleasantly surprised at how welcome and comforted you feel. If you do not have a computer that you can use in your child’s room, ask someone at the hospital—both Duke and UNC have computers that family members can use for such purposes.

I hope that many of these practical tips are relevant enough to transfer into the life of anyone touched by cancer, not just those touched by childhood cancer. I wish you and your family all the best during this difficult time.