More Miles, Less Cancer

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You are too soft with him, he’s feeling insecure because of your pregnancy and he found a way to get attention”.

 

We could barely recognize our own son. He had always been our easy lad: calm, observant, independent, he was Mr. Smiley though quite stubborn at times. Extremely verbal and witty, he never ceased to amaze us by the rapidity in which he would grasp and swallow any new concept.

But when he used to be cuddly, he was now clingy and his obstinacy became whining. His quietness gradually turned into lethargy. He asked to be carried everywhere, and “would you rub my back, Mommy please” became his favorite sentence.

 

It took us about three months to figure it out. It took several trips to the doctor for “nothing” and his distressed, lifeless and teary eyes for us to finally step up: “This is not normal; this can not just be jealousy.  We want some lab works”.

 

A pediatrician’s call in the morning is usually not a good sign. “Pack your bag for the night, I have made an appointment for you at the Children’s hospital, Liam’s red cells are too low, he needs a transfusion right away.”

 

Having only noticed the word “HEMATOLOGY” on the door, I was still miles away form the striking truth. We had been too close to him to notice his increased paleness and few bruises on a boy with two big brothers did not seem out of place. But Doctor Wells only needed a rapid glance to confirm what he had suspected from the lab work, and with his battery of questions, he slowly, led me to half-whisper “but we are not talking about anything like cancer, right?”

 

They say silence speaks volume.

 

I believe this is Leukemia. You should call your husband.”

 

They say words can be lethal.

 

My head had just started to spin that three-year-waltz and Liam was indeed diagnosed with Acute Lymphoblastic Leukemia. The next year brought us to visit Dr. Wells more than a hundred times, and I always wondered how I missed seeing the word “ONCOLOGY” written in big letters on the front door.

 

Soon, he had lost his hair and the use of his legs, he went back to diapers and the chemo side effects went from mild ingrown eyelashes to a serious Vino-Occlusive Disease. He was hurt, he was afraid, he was mad. And then it got worse: he was used to it.

 

The reality of this 3 years old, 21 lb, little boy was to lay on the couch, with a bag of ice to stop his nose bleeds while learning to read and count to pass time. And at night, when we would run out of sheets after the 6th change, he’d say: “don’t worry; I can roll over to the other side till morning”.

Even night rides to the “green unit” because of high fever, or accessing his catheter which used to terrify him so much that the blood vessels on his skull would explode, became routine, and only the shots I had to make in his arms would remain a torture; for the both of us.

Before the two years of easier “maintenance” therapy, he went through 19 surgeries, 6 weeks of hospitalization, over 50 blood and platelets transfusions, a dozen kind of chemo, and an array of steroids, anti-nausea, antibiotics, pain killers…

 

Before the two years of easier “maintenance” therapy, his big brothers were to stay in neighbors’ houses countless nights, were stripped from their clothes upon retuning from school to avoid spreading possible contagious virus and were not allowed to have friends over. His baby brother learned to walk holding to an IV pole and was mimicking poking a “tubby in the little box” on his doll. His dad had to work nightshifts and his mom learned to sleep sitting down.

 

Before the two years of easier “maintenance” therapy, the family and the hospital staff were on first name basis.

 

But we had a hospital. We had doctors, nurses, mentors, associations, insurance, savings, family, blood donors and available drugs. Liam was diagnosed in time and treated. Liam’s hair came back. So did his smile.

 

The UICC reports that “each year, more than 200,000 children are diagnosed with cancer, and it is estimated that 90,000 will eventually die of their disease. Although childhood cancers represent a small percentage of all cancers, most of them can be cured if prompt and essential treatment is accessible. However, as 80% of children with cancer live in developing countries where access to information, early detection and effective care and treatment is difficult, more than one out of two of these children diagnosed with cancer will die.

 

Head or tail for the life of a child.

 

We made a promise. Help us change the odds.