Matthew

matthewThe first time my sweet boy, Matthew was placed in my arms was also the first time I can recall feeling complete content.

His life would be the beginning of many firsts for me and I will apologize in advance to my other children for my next confession….but Matthew was the first and only child that I ever cried the instant his little being graced this world….I held him close…mentally I began to profess my hope and dreams that a mother does when she holds her newly born child…. “I can’t wait to begin our lives together”, I thought kissing his most perfect round tiny head and if in response he nuzzled close into that area…the one area near the neck that is a divinely created for little newborn heads to snuggle.

Sheer unimaginable bliss that is what you could call moments like those.

It would be at our two month well baby check-up at the local pediatrician’s office that my bliss would turn into sheer unimaginable horror. Matthew had a stubborn case of bronchitis and with a very intuitive hunch our pediatrician sent Matthew in for his very first set of blood labs. As soon as she requested it I immediately burst into tears. “I have never had to take my child in for blood work before” I worriedly exclaimed. She re-assured me he would be fine, “I just want to cover everything but really look how happy he is” as he cooed and grinned.  My worry would turn into shock when on my first day back from maternity leave I would get a call at work about those dreadful labs….. “Your son is very sick” was all I kept hearing but no one was saying the “C “word….They were saving that vicious type of lingo for our new team of oncologists who were already gathering in the early morning hours at Lucille Packard’s Children’s Hospital. The brutality of it all truly sunk in when doctors took my tiny baby from my tightened embrace and attached him to a medical gurney. We would then board a helicopter for the first time in both our lives…it was then that I knew despite my son’s continuous smile he was in fact very sick…very sick indeed.

During the longest 20 minute flight of my life for the very first time I felt this gut-wrenching, breath taking, drop you to your knees type pain…. The second time I felt this particular pain was when they said those evil words “Your son has cancer” ….then again when they told me that they had no real good treatment for my son’s type of cancer. “Give him a kiss good-bye” they said as they sedated him and with that kiss came the first of many prayers begging God to not let my baby die.

Doctors weren’t sure whether Matthew would survive the next few procedures needed to save his life because his little body was riddled with cancer cells. Every organ was affected…it was mind boggling how he could be in such a critical state. As in most cases upon diagnosis children with cancer are in a critical condition since the cancer has already traveled to other areas of their bodies. Matthew’s cancer was not only flowing freely through every vein but was also in his brain and spinal fluid. When I discovered that Matthew’s type of cancer started to form as he first formed in the confines of my belly  I wondered why….not why my child….but why we never thought to test his blood at birth….standard treatment for newborns upon arrival is eye drops to prevent transmission of STD’s, Hepatitis B vaccination, vitamin K shot, hearing test, and a blood sample that is a newborn metabolic screening used to test for many diseases except for cancer…if a doctor would have added a full WBC to that blood sample order it would have revealed that my perfect newborn son with all ten fingers and toes, had cancer. Leukemia is the most common form of pediatric cancer and a simple blood screening could be the way to an earlier diagnosis for many children. Unlike some adult cancers that have mammograms and prostate checks there is not one…nada….zilch….preventive cancer screenings available to our children.

My cancer fantasyland that I had been living on began to crumble all around me and everything I knew…or thought I knew about cancer would end up being wrong… I had thought childhood cancer had a high cure rate….many people in hopes to comfort us said those exact words when Matthew was first diagnosed…In fact Matthew was diagnosed with ALL (Acute Lymphoblastic Leukemia) one that actually claims to have an 85-90% cure rate… but there is some “fine writing” with many of those claims….sadly the “fine writing” revealed that Matthew had a type of leukemia that fell into a different subset. The official term is Infantile Acute Lymphoblastic Leukemia and with that added extra little word “Infantile” our 85-90% became a 20-30% chance of a cure…and our cure came with a big IF…. only IF my baby could endure a three year experimental cancer treatment protocol called ALL0631. Matthew would relapse a year and half into that experimental protocol which today is no longer available because of its high relapse rate. With Matthew’s relapse came another first when doctors at Lucille Packard’s would tell me that they have nothing left in their cancer arsenal to help Matthew. It would be the first time I would know the feeling of hopelessness. Our oncology team who had worked so diligently to save Matthew would now help gather us together and with their blessings send us off to St. Jude’s Children Research Hospital. We would jump feet first into even harsher treatment…no time to wait… Matthew’s type of cancer had only proven to be aggressive and far swifter than any cancer treatment. My two year old would endure a cutting edge transplant called an HLA mismatched transplant using my cells….you could only imagine my excitement at the thought of my very own cells seeking out and killing his cancer cells one by one. Matthew’s cancer would prove too strong for my cells….His leukemia in fact mutated tricking my cells into thinking they belong there and after only 100 days from his first transplant Matthew had relapsed once again. We were given the option to transplant once more this time using his father’s cells. Our team of oncologists reassured us they have had some patients endure multiple transplants to achieve a remission….One doctor told me “Sometimes it’s just a matter of luck”….I was so frustrated that all we could offer my son who had fought so very hard each day of his life was treatment that was based off science wrapped up with a whole lot of luck…Broken but not defeated we marched on…if another patient could get “lucky” why couldn’t my boy get “lucky” just this once…. A great battle ensued in my son’s body as his second transplanted cells fought for dominance….there would only be one victor and Ron’s cells thankfully won but the cost to Matthew was heavy nearly losing his life twice in the ICU. My son being the fearless warrior that he was would surprise doctors with his resilience to win all while smiling. Everything was finally heading in the right direction and Matthew was healing each day. I was ecstatic with all the opportunity that lay ahead for him as he began physical therapy and walked again for the fifth time. Soon he was saying all his old words plus some new ones which was always a relief since treatment would often take his ability to speak for stints of time…. Except for “moma” cancer never was able to take that one… it was engrained in his head….Matthew was a budding genius I always used to say the chemo made him smarter because despite what cancer took he would just work around his disabilities. He learned sign language and figured out other means of communication. I will never forget my two year old who was on his fourth day of no food or liquids due to a GI bleed would sign “more food” to anyone who entered his room even the janitors. He became a product of his environment…he knew all the required steps to clean and flushing central lines ….he knew not  only how to work call buttons sending our nurses running in each time but he also discovered which button to push to quiet the alarms on his IV pump…his curiosity of all technology lead to what we called his IPhone finger that would swipe sideways at anything with a screen. I just remember feeling such pride for him because despite everything cancer could not break him, he seemed invincible. My very own cancer Superman, it would not be long before my hero’s kryptonite came back and we would have to give him even more treatment. A final boost of Daddy’s cells to wipe out those last pesky cancer cells. Unfortunately his lungs had seen enough toxic treatment and on Christmas day they would give up requiring breathing machines to forcibly pump air into them. One doctor explained that we have a fairly healthy boy attached to a set of very sick lungs. On February 8th 2013 for the first time in my whole entire life I was witness to the death of an amazing cancer warrior, my beautiful son Matthew Robert Pierce. He would be one of the many children we lose not to cancer but to the very treatment we use to save them.

In the wake of Matthew’s death I couldn’t help but find myself angry with the way we fight pediatric cancer. Our government gives them literally pennies of the budget allocated for cancer.  Imagine a person of ethnicity or one whom is homosexual being denied access to funding allocated for their disease only because they were ethnic or based off their sexual preference….It would be an outrage…people would not accept it….yet in America presently you will not get access to equal funding for healthcare if you are a child. Not just pediatric cancers… across the board all children face an inequality that should not exist in the 21st century.

We need to change this.

Awareness is another important area for change…not more gold ribbons but a real awareness that pediatric cancer is not rare. Every time I hear that statement or the 90% cure rate I really want to scream. The cure for a child with cancer comes at a high cost and many live with debilitating effects from toxic treatment. Think about it…. our cure for cancer often kills us…only the lucky survive….now imagine what that survival actually means. Treatment for pediatric cancers is an area that is starving for more pennies….I myself was naive to the severe underfunding, up until Matthew’s diagnosis my knowledge of children and cancer came from the St. Jude’s commercial that would occasionally appear on the T.V screen….normally I would decide to turn it off unable to bear witness…..so I looked away. Then my cousin was diagnosed with a rare pediatric cancer. Shamefully I did not get real involved with his battle instead I comforted myself with thoughts like “high cure rates and today kids don’t die from cancer.” I also really believed that pediatric cancer was rare and that the likelihood of one of my precious children getting cancer must also be rare. It was that very night in the wee morning hours as I stood in the ICU…when they said those words “your child has cancer” that the real truth came out…..Either the definition of the word rare is wrong or pediatric cancer is not rare but is in fact a national epidemic wiping out our young folk at a rapid speed. From a logical perspective you cannot have an event be rare in occurrence and yet have hospital wards filled with that rarity. What is “rare” is an empty room on a pediatric oncology unit.  Often enough we were waiting for one to open up upon our arrival to various admissions and our room was always “needed” upon our dismissal… In fact in the year 2013 pediatric cancer according to many statistics became the number one killer of our children surpassing automobile accidents. Cancer isn’t just seeking to wipe out our children it is also happens to be the number one killer by disease of America’s young adults ages 15-39. It is no longer a disease of the old but on the contrary a disease of the young….stealing our mothers and fathers….brothers and sisters….future inventors, presidents, doctors, and creators.…I once read that the death of a child is like a period before the end of the sentence…but that is what cancer is like…it takes the person before their sentence was finished…we will never know what it is they had left to say or do….what were they going to create…because cancer stole their story.

The very future of our nation is in jeopardy and throwing pennies at this monster will never suffice.­

I recently read a wonderfully insightful book about cancer called The Emperor of All Maladies: A Biography of Cancer written by oncologist Dr. Siddhartha Mukherjee. Many great early cancer crusaders are mentioned in Dr. Mukherjee book but one whom caught my fancy was Mary Lasker. The cancer warrior that seized Mrs. Lasker’s heart inspiring her to begin a war against cancer was her housekeeper who was diagnosed with the disease at a time when cancer was an unspoken taboo. Mary wholeheartedly believed that research could produce a “cure” for cancer. Her goals seemed unachievable but she was relentless in her pursuit. She convinced powerful people in radio and at publications like Readers Digest to allow for the word “cancer” to be said over the airwaves and be published. This opened doors for public announcements in regards to screening and prevention.  Mary and her “little lambs” lobbied Congress for increased research funds for the National Cancer Institute, funding increased from $1.75 million in fiscal 1946 to more than $110 million by 1961. She even was able to convince President Nixon to pass the National Cancer Act of 1971 a law designating the fight against cancer a national priority which became America’s official declaration of war on cancer.

It’s been over forty years since America began its war on cancer and unfortunately we cannot say it is a war that is being won. The longevity of such a tiresome battle has brought into question whether this is an actual war that can be won. One declaration I passionately disagree with in Dr. Mukherjee’s book is when he says

“We might as well focus on prolonging life rather than eliminating death. This War on Cancer may best be ‘won’ by redefining victory.”

I can only imagine how discouraged oncologists and researchers when so many times a cure seems so close yet so far away. It has got to be beyond frustrating for their life’s work and passion to save lives result into only more time…..but redefining victory? How can you tell the soldiers’ and their families on the front line of this disease that victory must be redefined? What if victory was redefined when war was declared against Hitler and his army or President Lincoln’s war on slavery? This world would not be what we know today if in those cases victory was redefined.

We cannot redefine what victory means to those suffering from cancer.

We can change war tactics…Out with the old in with the new…We must re-group, re-commit, and re-equip ourselves with a bigger army and that army is you. We must show our support for organizations committed to bringing our soldiers home. Together this war can be won but it will take everything we have to give…and with that gift children like Matthew can have a future and a cancer mom’s like me will have more than just time but a lifetime.

“Son, a real battlefield lacks dignity and honor. When lives are being spent—actual human lives—those high-minded concepts lose their meaning. All that matters is victory. If you have blades, you’ll use blades. If you have rocks, you’ll use rocks. If there’s nothing but sand, you’ll throw the damn sand. A true war is only waged when men don’t want to live to see what failure looks like. You do what it takes to win. You go wherever necessity takes you.” -B.Justin Shier, Zero Sum

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