Home Invasion

Written by Candice, Mom to Caleb 

When you hear the term home invasion, what comes to mind? It is defined as a burglary of a dwelling while residents are home. To most people, that is what comes to mind... But for 36 families a day something else comes to mind. Cancer. When you're told that your innocent child has cancer you are robbed point blank of all that you have ever known. Your world is turned upside down and all you knew before has been tainted.

On March 13, 2012, our home invasion occurred. It was my 33rd birthday as we sat patiently in our local Children's Hospital Emergency room awaiting the results of his CBC. Earlier in the week my normally healthy and very active four year old, Caleb, had fallen at soccer and complained of pain in his arm. They had put a cast on his arm and now he had pain in his leg. After not walking for the weekend, his orthopedic sent us to the ER thinking he may have a bacterial infection in his hip. He began walking again while in the ER and the orthopedic stated, "Let's just run this lab and you can be on your way." The CBC was taking abnormally long and I still did not know that what I was about to hear would change our lives forever.

Eventually, the ER doctor came in and I can still remember, clear as day, her talking very slowly, leaning up against the counter and the look she gave me. She said the results of his labs are back and I don't know how else to tell you this, but we believe your son has leukemia. I went absolutely numb, my sight went blurry and all I remember is the people in the room shuffling things around near me. Faintly I remember Caleb saying, "What is wrong with Mama?" The doctor then pushed two chairs together so I could lay down and she gave me damp face rags for my forehead because I felt sick and weak.

At that moment our lives were invaded and our world, as we knew it, was turned upside down. A lot of families I have met since my sons' journey began nearly 11 months ago feel the same way. Majority of them found out randomly and it was a complete and utter shock. But most of us found out because we kept pressing an underlying issue and had that "mother's intuition." Cancer was never something that crossed any of our minds as parents. Childhood cancer especially never crossed any of our minds and why would it? I would be the first to admit how naive and uneducated I was about childhood cancer prior to that day. Had I heard about leukemia and other childhood cancers? Yes. I saw commericals on television, heard of fundraisers and drives on social networking for other kids, but I would've never imagined that my own son and I would be thrown into this world of childhood cancer. We were though and that day we began his fight, the fight to save his life.

When first diagnosed you spend the first two weeks or so inpatient. I remember being in a zombie state of mind the first two weeks. Everything seems to just be a blur. Within the day of hearing the worst possible news as a parent you need to start making decisions that will ultimately begin to save your child's life. You talk studies, clinical trials, genetics, chemotherapy and side effects that can be minor or major and you put your signature on more papers than at the closing of a house. You and your child have no normal sleeping pattern, as nurses and doctors are in and out of your room sporadically at all hours of the night and your mind is racing a hundred miles a minute. Your child has major surgery in the first days of treatment to have their portacath placed in their chest so they can receive treatment. I can still remember how scared my son was in the first few days. The questions he'd ask and to this day he still talks about the day I was crying after the doctor told me "his blood was sick".

All normalcy stops and you have a new normal with a cancer diagnosis. Children and parents get pulled from normal routines. Work, school and life is basically put on hold. You need to worry about your child's counts and keeping them safe from germs. Your purse or bag is filled with more antibacterial than you ever thought you'd have to purchase in your lifetime and more thermometers than a normal family keeps in their home. Your nurses and doctors become like a second family and your child's and your friends change. Some people you were very close with become acquaintances and some people that were complete strangers become best friends. Sadly, with a cancer diagnosis a lot of people not directly affected by it do not know how to handle it. Not only does cancer effect the immediate family, but extended. You gain and lose friends. Some friends just grow distant because they don't know what to say or catch you at the wrong moment. You gain many new friends going through the same journey with their children. They are there for you at all times, like you are for them and at many times there more than family because they understand. Phone calls, text messages and emails at any hour is expected. The friends that I have met along this journey call each other "the friends we wish we never met." The only reason our paths crossed was because our innocent children were picked to battle this wretched disease and us by their sides. In the end, we all fight this together.

Throughout treatment, as a parent, you have highs and lows. You experience and see random acts of kindness by people you have never met. It opens your eyes to the good in this world and in our society. You also have the lowest of low days when you don't even want to get out of bed and wish it was just all a bad dream. I had many days like that, especially while inpatient. You wake up thinking was this all just a bad dream and then reality hits as the IV Pole monitor is beeping and nurses come rushing in. You need to help your child understand how and why things are different now. Instead of going to the park or playing with friends, they are going to clinic or spending the day at home. One thing that was difficult for my son was losing his hair. For as long as I can remember, he never liked hair cuts and you would think losing hair wouldn't really affect a boy as much as a girl. Truth is, it really did bother my son, especially since he didn't want to wear baseball hats much. You'd be surprised but people stared a lot more than I had expected and even being four years old at the time, he noticed it too. I know people don't mean to be rude and stare, but I think they are all just unaware about childhood cancer.

Also on the day my son with diagnosed I became an advocate, like many of my "friends I wish I never met." We became a voice for these kids. When you are thrown into this world of cancer you realize how naive you have been to not know how childhood cancer is NOT rare and how underfunded it is. It saddens you to find out how little funding and research there is for childhood cancer, but it also lights the fire in you to do something about it. So sadly, the parents who are standing strong by their child's side fighting with them as they undergo harsh treatment to try and save their lives must also be the voice and driving force behind them to help create awareness and gain funding to ultimately find a cure so no child has to endure this wretched disease.

Overall, even though hearing the worst news any parent could hear you have two paths to chose from. You can sit back on the sidelines or you can use your voice and your experiences to grow from it. I chose to grow from it. I learned more valuable life lessons in the last eleven months than in my 33 years to date. I learned to appreciate each day, each blessing and every moment with not only my son, but everyone in my life. It taught me to live each moment like it is my last, because as I had learned things can change dramatically in minutes. I promised myself that from that day forward I will be an advocate for my son and all the children battling this disease because they so desperately need a voice. Each year some kids and parents celebrate their "cancerversary" in some way. My birthday will never be the same for me, but I am going to try and do something positive instead of dwell on the horrifying news I was told on that day. This year I am becoming a Volunteer Ambassador for Be The Match and planning on holding a donor drive for a young girl we met in clinic who is in search of her perfect match. In this past year I have learned that there are many generous and kind people that want to help you during difficult times and I, in turn, want to be that to someone else. I believe that by paying it forward and helping someone in need in some way, my son will learn a valuable life lesson.

Candice
"Caleb's Mama"
helpcurecaleb.blogspot.com
www.facebook.com/kickinitwithcaleb

Caleb Blaise is five years old and battling Hypodiploid Acute Lymphoblastic Leukemia and in the very high risk category. He is currently in his maintenance phase of treatment, which will last until June 24, 2015. Caleb is responding well to his current protocol. Please feel free to share his story to help create awareness and follow his journey on his blog or facebook.