A Child Gets Chemotherapy

September is Childhood Cancer Awareness Month.

Today I remembered chemo…

The chemotherapy drugs given to your child in the hopes that it can cure them are also hazardous chemicals that bring a whole host of other side effects, some irreversible. Side effects including heart damage, kidney damage, infertility, adult onset cancers, hearing loss, and others. Your child’s doctor shares this information with you prior to starting chemotherapy as if you have a choice. The choices are possible life or for certain death. What choice can you make but to agree, no matter how horrific it all sounds?

Typically Pediatric Oncology Nurses wear the kid friendly scrubs that you see all pediatric nurses wear. However, they also wear additional “personal protective equipment” on an oncology floor when administering chemotherapy. Therefore, when the nurse comes into my daughter’s room to connect chemotherapy, she comes into the room with additional protective gear. On this visit, she wears an additional gown covering her scrubs, a mask, extra thick gloves, and protective glasses. Picture someone about to enter a nuclear chamber and you probably have the right visual.

She hangs the bags of neon colored fluids from the IV pole. She checks the tubes that have been surgically implanted into our daughter to make sure that they have good blood flow. She presses multiple buttons on the IV pump as she double checks the doctor’s orders. My daughter and I can’t help but nervously look at the bags, as their neon red and yellow colors appear so vivid in the white hospital room. The nurse tries to act normal to keep everyone calm but it is even difficult for her because she can’t make even the slightest mistake or there could be lethal consequences. She must concentrate to make sure that every procedure is followed to the letter.
A nursing supervisor arrives and verifies everything has been done correctly. The tubes are connected and the nurse presses the start button on the pump. Everyone in the room watches as the neon fluid makes it way down the tube, out of the bag, through the pump and directly into the chest of my daughter.

Most people cannot imagine what it is like to be to be told that your child has cancer. This is just one of the dreadful experiences that a child and their family has to endure over and over again when cancer is present in their lives.

Although we have access to world class medicine, there is a lack of emotional and spiritual support for children diagnosed with cancer. An organization called Striving for More has been established to encourage and fund quality emotional and spiritual support for children with cancer. To make a donation or to find out more, go to http://www.striving4more.org

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To Fully Understand the Childhood Cancer Experience, Watch this Movie

I just finished watching A Lion in the House. It is a documentary that was released in 2006 and is both an Emmy Award and a Sundance Film festival standout. It focuses on five families who each have a child battling some form of childhood cancer.

The filmmakers (Steven Bognar and Julia Reichert) also fought the disease with their own daughter and I believe that this was one key to the movie being such a success. Their narration was incredibly sensitive and clearly coming from the perspective of personal experience.

When the film was originally recommended to me, I was not emotionally prepared to watch it but I knew it would be important for me to watch someday so I purchased it. In fact, I am not even sure I was emotionally prepared to watch it today. However, my plan is to begin public speaking in October and I have begun preparing for this by attending classes and setting myself up for mini speaking engagements.

As I prepared to sit down and write my first speech today, I decided that watching the movie would be good preparation. Perhaps like an actor getting into character. You see, I tell my story every day, many times a day. I believe I have subconsciously forced myself to push my emotions down deep in order to get my business (of building Striving for More) done.

This movie helped. It rushed me back into the days when we were going through it all with Colleen. I feel every emotion now. I can write the speech and fully feel.

While I watched the movie, I was keenly aware of the depression in the children. There was one young boy that was clearly depressed. The camera zoomed in on the tears running down his face as the reality of a feeding tube which had just been placed in his nose (and having to attend middle school that way, sunk in).

The movie never showed any emotional support being given (that is not to say it was not offered). The movie focused on the parents, the children and the oncologists and did not focus on any emotional support areas provided to children with cancer (that Striving for More is working so hard to fund like psychologists, child life specialists, social workers, and pastors.)

Now that I am outside of the situation and watched this movie, it rejuvenates my passion as I watch the emotional disruption on the adolescent boys and young girls portrayed in the film. The parents were fighting for their children's lives and they too needed emotional support. There was one line in the film spoken by a hospice nurse after a young patient died after her father forced her to go back into the hospital for one last attempt at chemo against her wishes. The hospice nurse said "...prolonging a process that would damage them spiritually and psychologically.."

I strongly encourage all of you to watch this movie. September is Childhood Cancer Awareness Month and most of America is unaware of what these children are go through.

The good news is that childhood cancer survival rates are rising. The bad news is that according to a 9/2008 Progress Policy Institute Report "Childhood cancer incidence overall has risen by 33 percent since Nixon's declaration (1971 declaration of a national effort against all forms of cancer); brain and other nervous-system cancers in young children have increased by over 50 percent; and the incidence of non-Hodgkin's lymphoma in teenagers has more than doubled."

Most of you may already know someone who has walked this journey with their child. Perhaps a neighbor, perhaps a friend. Perhaps a colleague. Maybe it is just me, through this blog.

The interesting thing is that even those closest to Vince and I do not fully understand what it was like. This movie however, will bring them very, very close and understanding is so important to fully supporting.

{The movie is available to buy on Amazon but it is also available to rent through Netflix and through Blockbuster (not in all of the stores, however so check on the web). }

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