Childhood Cancer: Why Me? Why Her? Why Us?

When your child is diagnosed with cancer, you can't help but ask yourself all sorts of practical "why" questions.

You scour your brain trying to figure out why your child got cancer when there are millions of other children that don't? Was it the fluorinated water we gave our children thinking it was good for them? Was it the fertility medications that I took while trying to conceive? Was it the prednisone that the doctor told me that I had to take in order to sustain the pregnancy? Why didn't I force her to eat more fruits and vegetables?

Then I moved on to spiritual questions. Why would God allow this to happen to a child? Why would He allow a child to be diagnosed with a disease that is so painful? Why didn't we have more warning so we could have caught it earlier? Why us? We are good people. We haven't done anything bad. We have attempted to take good care of our children and be upstanding people in the community.

Colleen was diagnosed in September 2007. I continue to ask myself many of these questions to this day. The frequency at which I ask myself has slowed and I feel like I can answer some of the questions, but I continue to ask them anyway because I am not always content with the answers.

I vividly remember a conversation that I had with a close friend and spiritual advisor shortly after Colleen was diagnosed. I remember asking her "How could God allow this to happen to her?" Her answer was brief but powerful and I will never forget it.

"God is crying along with you," she said. She continued on to remind me that God has given us all free will. As a result, we sadly live in a fallen world full of pollutants and dangers that have the potential to harm us (and our children). He can't save us all. What He can do is support us on our journeys if we choose to let Him.

One of the hardest situations for me was when people told me that they were praying for Colleen to get her miracle. I am a woman of deep faith. Sadly, however, I did not have faith that the multitudes of tumors in my daughter's body were going to suddenly disappear from the scans. So those prayer offers often upset me. Prayers for comfort, peace and pain-free days were much more welcome. But how do you say that to someone?

I was speaking to a friend the other day whose son has terminal brain cancer. He was in hospice for several months, the family in a holding pattern, not quite sure how many days they had left with their precious son. When people asked her what they should pray for, she would say that she just didn't want him to suffer.

A couple of months ago, he began to gain his energy back. He started to feel better and he was happy and playful. The family excused hospice, as their services did not seem to be needed any longer. I spoke to his mom last week, she was devastated because the new scan results came back and they were "all lit up," meaning that the cancer had spread significantly. She was so confused. How can this little boy that seemed to be feeling so much better be riddled with cancer? I told her that I was very sorry to hear about the scan results. She must be horribly confused. But it sounds to me like God had answered her prayers. He wasn't suffering.

I asked her if she had peace. She said she did but that she felt guilty for having it. Boy, can I relate to that! I feel guilt every time I consider that I am happier in my career now, as a result of my newfound career (helping children with cancer and their families) than before Colleen died. But then I have to remind myself, as I did my friend on the phone that day, that this is a beautiful gift that God bestowed on me and we should never, ever feel guilty for the gifts God gives us.

So why her? Why us? Nobody can answer that question. Why anyone? What I do know is that each of us is put on a path in our lives, and we can choose to live that life triumphantly like Colleen did or choose to kick and scream the entire time. I am very proud of my daughter and the number of lives she touched through her unfortunate and painful journey. However, I found my purpose and that is an incredible gift that I will always be grateful for.

Diane Moore is the founder and executive director of Striving for More, a Triangle-based nonprofit organization dedicated to ensuring that children with cancer and their families receive quality emotional and spiritual support. Visit http://www.striving4more.org for more information.

Diane Moore, Founder and Executive Director
Striving For More, Inc.
http://www.Striving4More.org
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Childhood Cancer: Will My Child Be Able to Go to School?

I distinctly remember "Will my child with cancer be able to go to school?" being one of the first questions we asked shortly after hearing the diagnosis from my child's doctor. Because she was a young child, I needed to remember, school was her job and her social network and it was the nucleus of her life.

Although some kids may say that they don't like school, if they are unable to attend for long periods of time, it has a huge impact on their lives as it removes them from their social network and gives them one more major reason to feel different than their peers.

The answer we heard was "No, at least not for a long time." Keep in mind that each child is different, and depending on the type of cancer, the stage of the disease and the recommended treatment protocol, your child might be capable of attending school with special considerations. This topic proved quite confusing for me. In retrospect the confusion was probably the result of years of recognizing how important school was and that kids should not miss school unless they were really sick. If they miss a day, sometimes it is hard to make up the work, especially as they get older and enter middle school and high school. However, under these circumstances, you need to forget those preconceived notions. The reality is that with one-on-one tutoring, and with the focus on what your child really needs help with, most children only need a short period of tutoring to keep them up to speed with the rest of their class.

Why School Might Be a Struggle

You are initially overwhelmed with tests, diagnoses and, usually, the immediate start of treatment. In some cases, hospitalization is required for port placement or biopsy surgeries shortly after diagnosis.

The child often feels ill from chemotherapy and the other medications he/she is prescribed. Some cancer diagnoses require lengthy inpatient stays as a result of the chemotherapy protocol. However, the trend is moving toward more children being treated as outpatients. This, combined with more effective medicines to treat chemotherapy side effects, increases the likelihood that children can continue their education.

Your child may miss school frequently and for long periods of time because of his immune system being suppressed, and he cannot be in places where there is a risk of catching something. And we all know school is a very high risk area when it comes to spreading germs.

Children can have high levels of fatigue or severe mobility issues.

Why School is the Right Thing to Do

It is important for the child undergoing cancer treatment to return to school as soon as he/she has been medically cleared. Returning to school offers the child and family a sense of normalcy and a sense of purpose and allows time to socialize with peers. Often schoolwork can be a distraction from treatment or painful procedures. Having to go to school is not only a sign that things are getting back into a routine, it's also a clear and reassuring message that there is a future.

When Returning to School Plan for your child's return to school with teachers and the school guidance counselor beforehand so everyone can be properly prepared. A 504 plan, specifically OHI (Other Health Impairment), is a form that can be completed with the help of your child's guidance counselor. This allows the school to give your child special accommodations that might be needed as a result of his/her physical condition. For example, Colleen was in a wheelchair and we needed to complete a 504 plan so that she could use the staff elevator and the staff restrooms. In addition, some schools have strict rules against the wearing of hats.

If your child is more comfortable wearing a hat after losing her hair, then the 504 plan might specifically give her permission to wear a hat while on the school campus. Some hospitals have a school re-entry program where a medical staff member goes to the school with your child and provides a classroom presentation to convey age-appropriate information to classmates to demystify cancer. For example, some children may think it is contagious and avoid your child when he returns to school. Others need to be given the opportunity to ask questions about your child's physical condition (i.e., his hair, a prosthesis, etc.). This presentation empowers your child through the support of the accompanying medical professional.

It also helps decrease the barrage of questions your child might receive that may increase stress during the first days back.

When Your Child is Out of School for a Long Time In some cases, your child may just be unable to go back to school for a long time, like in the case of Colleen. She had a very advanced case of osteosarcoma, which required aggressive inpatient treatment, and when she wasn't being treated, she was usually completely broken down and immune suppressed from the treatment. Fortunately, the school system and the hospitals have resources to help families in situations like this.

Outpatient-Talk to your child's school. There is a system called Homebound to assist children who will be out of school for four weeks or longer. A teacher will be provided for up to three hours per week to tutor your child. Ask neighbors and other family members to help with homework/tutoring. Your child's teacher will give you a realistic idea of how much time you should spend each week, but I guarantee it will not be anything close to what your child spends in school.

Inpatient-We are fortunate that both of the Triangle-area pediatric oncology hospitals have "hospital schools." Teachers are available to work with your child on the specific work that she is doing in class. The hospital teacher will contact your child's school, find out the appropriate curriculum and work with your child accordingly.

Also, be sure you communicate your needs to friends. In our case, the mother of one of Colleen's classmates volunteered to come in and tutor Colleen twice a week. She was an elementary school teacher who was taking time off to raise her children, and she is now a special person in our lives. You never know who is out there and willing to help you and your family.

The Bottom Line The emotional well-being of your child requires that his/her mind stay active and that he remains involved with his social circle as much as possible. Find ways to help stimulate your child's mind that will also be fun. There are lots of great homeschooling sites now that can help with ideas. Origami, reading, puzzles, writing in a journal-there's no end. Consider giving your child a project that involves social networking and interacting with people around the world. In the 21st century, there are lots of great ideas.

If you are thinking "Are you crazy? I don't even know anything about social networking myself!" I promise you, there are lots of people in the Triangle that would gladly spend some time with your child showing them the world through a laptop! If you don't know where to find them, I do! Send me a note through the Striving for More website.

Remember, children need relationships outside of their families, and they need to feel a sense of accomplishment. If they can't get to school, be creative and come up with ways to fill those needs for your child.

Diane Moore is the founder and executive director of Striving for More, a Triangle-based nonprofit organization dedicated to ensuring that children with cancer and their families receive quality emotional and spiritual support. The Striving for More website ( www.Striving4More.org ) has many links that can direct you to specific Triangle-area websites regarding homebound services. Go to the website, roll over the "community" tag on the menu and click on "resources." Then click on "educating the child with cancer."

Diane Moore is the founder and executive director of Striving for More, a Triangle-based nonprofit organization dedicated to ensuring that children with cancer and their families receive quality emotional and spiritual support. Visit http://www.striving4more.org for more information.

Diane Moore, Founder and Executive Director
Striving For More, Inc.

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