Charlotte, daughter of Pia de Jong was born with a rare form of leukemia. When Pia was informed about the possible consequences for her daughter, she chose not to let her undergo treatment which also had the propensity to kill her.
When her infant baby girl, Charlotte was diagnosed with an uncommon and deadly form of leukemia, Pia de Jong and her spouse decided to reject a potentially deadly chemotherapy process. Rather, they in opted to wait and hope for the best.
What they did was to devote their time, love and support to their little baby girl.
Unbelievably, instead of death whisking Charlotte away from her parents, she survived and recovered. She is now a healthy.
Pia's intuitive choice to wait is now known as "watchful waiting". It is now the standard medical procedure for Charlotte's kind of leukemia.
Beneath is an excerpt from her intensely felt memoir Pia, a prize-winning literary novelist and newspaper columnist, carry the readers along with her on a journey from birth, to diagnosis to recovery.
I longed to allow my baby lie on my stomach for a moment, but the midwife takes her away.
She weighs and gauges her and then writes down the digits. Then she observes her from head to toe.
From where I laid, I gazed at her stroking her index finger along my girl’s petite back. Her eye brow moved, and her countenance varied. Within a mill second, which was more than enough to detect something Was off.
“What do you notice?” I enquired. She points to a lump on the baby’s skin, a tender, rosy hill. She pressed again with her index finger. When she raises her finger, the bump turns blue. It was like the color of a river in an isolated forest around midday.
“What is it?” I queried. “I have no idea,” she replied. “I’ve never seen such in my entire life.” She continues taking notes. I felt as if I could not breathe.
“What exactly are you writing down?” I asked. She circles her head to my direction. Her intense look is not reassuring. “‘ baby’s health,’ Notes: dot on the lower back. With little pressure, it becomes color blue. It will be monitored closely.’”
“Something is not right,” I tell Robbert. “Could you please check out that spot on the Internet, right now?”
He brings out his laptop and starts surfing through websites. “There is nothing about the spot on the internet,” he states. “Zero information about it.”
After he shuts his laptop, we dodge making eye contact. We are not at ease at all.
Several blue spots popped up every day. It was like blueberries on her little body
The pediatrician was a woman. She wore a laced-up shoe beneath her white smock. She clears grains of sugar off her sleeve.
We exchanged a firm handshake. She calmly waits and observes on the edge of her chair as we take our seat.
“I have some sad news,” she starts. “We are positive the spots on her skin are malignant tumors
“Your child was born with a very grave type of leukemia. Congenital myeloid leukemia, to be specific.” She articulates each word distinctly; the manner a stonemason sets one stone on top of the other.
“How life threatening is it?” probes Robbert. “I mean, I thought leukemia in children was easily cured?” “Yes,” she declares, “normally it is. But the kind your baby girl has is the most life threatening. I am sorry to say this, but brace yourself for the worst case scenario. Little Charlotte might leave us anytime soon. Very little time to spend with us”
I swiftly placed my hand on my little girl’s head to guard her against the evil pronouncement of the evil witchy pediatrician. The urge to sing a kids song gushed through me. I wanted to do that just like all mothers around do when the need to protect and support their children arises.
How could determine the expanse of time left? Years are just too big for a baby. Enormous, like pyramids.
A mother is like a propeller going forward. They determine the difference between standing and walking.
Days are brief voyages, crammed with thrilling escapades. Hours, perhaps. In which you can alternate between a daydream to a laugh.
Or was this physician talking minutes? The period needed to sing a child a song? Maybe a nap? could I determine the duration given to her in breaths?
Each of them unique in it is own way. But each can be counted, breath by breath.
Later, after she had an operation to ascertain her diagnosis we sat in the physician’s office.
“We need to formulate a treatment strategy,” the doctor suggests. “Select what you think is the best for her.”
He breaks. “The only treatment option is chemotherapy,” he declares.
“Regrettably, chemo is very unsafe for kids. For infants, it is so dangerous that it can lead to death. Even if they do live, the side effects could be disastrous. They could become blind, sterile . . .”
The doctor speaks on, but I no longer listen. My mind is somewhere else.
The doctor coughs, trying to restore my attention. He needs to know my thought.
I pick up my bag, which I placed on the floor next to my feet.
I had my red bag with me containing all the items I packed yesterday: my toothbrush, my nightgown, her violet woven vest with the zebra embroidered on it. I close it.
I wear my sweater and put Charlotte comfortably in her sling. I pecked her and got up, pulling my backpack over one shoulder.
“Goodbye,” I state. “Why?” he queries. “Because I am leaving,” I replied. Charlotte clusters herself against my body.
“Ma, you can’t just leave,” he declares. “Our goal here is to formulate a treatment plan.”
I look into Robbert’s eyes. I thought, he would support my decision. “We are not treating her,” I declared. “We are going home. All three of us”
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In my sleep, I could hear Robbert scampering through the house.
I’m awake,” I declared. “what is it ?.” “I discovered something significant this night,” he murmurs. “ I found a blog post about a kid in America. A black boy born with an identical disease as our baby.” He draws closer to me. “do you know what the catch is ?. The boy is still alive.”
Like our baby, he had blue tender spots on his skin, and like us, they too were told the child had zero survival rate.
Due to the fact that he was so young, they could not handle the circumstances. Therefore, they dropped him off at the grandmother and did not inform her about his leukemia, or the cloud of death hovering over him.
When he was eight, he shattered his arm on the soccer pitch. His coach took him to the emergency room. Then something remarkable occurred. When the nurse inputted his name into the computer, they found out who he was.
The doctors were in a state of disbelief and shock. This strong kid with a broken arm is the lost boy, the baby who should have died eight years ago.”
My feelings are in multiple directions. “So he was not treated,” I say. “And he survived.” “Precisely,” says Robbert. “He went into spontaneous remission.” My eyes were filled with tears. Charlotte's recovery perplexed doctors expectations (Image: Pia de Jong)
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As the months rolled away, I stayed true to the act of sing to Charlotte. Talking is difficult; the words just would not come. With singing, I laid out the world to my baby girl.
I resonate about those months she dwelled inside of her birth, her early moments, all my dreams, and me for her.
The New Year came along with a positive change in Charlotte’s condition. Though more colors appeared, and her feet are dotted with tumors.
We could only imagine what occurring under her skin. We read every article we could lay our hands on about her ailment. There was nothing we did not read.
I marveled if the lumps were in the same spot as before. I did everything I could to recall where they were. I should have diagrammed them, I thought. Some vanished over time, and new ones popped up o in different places.
She is growing. She is starting to behave like her brothers.
Charlotte attempted to roll over on her stomach on the blanket. She attempts to thrust herself up. It zaps all her strength, but she did it. I observed her surprised. How did she manage to do that? When did she become so tough?
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“Her back is spotless,” declares Robbert. We were about to bathe her. He grasps her feet in the water.
Inquisitively, I ran the ends of my fingers along her back. and I pressed softly.
The blue spot that the midwife pressed when Charlotte was born had disappeared— as much as I searched.
“This is huge,” Robbert utters. “I don’t know how she pulled it off or how it worked inside her, but she has emerged victorious on her own.”
“Her skin is spotless,” the oncologist declares after a detailed examination. He appears astonished as well as thankful.
Charlotte lay on the examination table, her feet in the air. I have been playing with her about it by attempting to grasp her toes. “is it gone?” I ask. “Yes,” he says.
“The cancer is gone,” he declares. “we can’t believe what just occurred.”
“Charlotte,” I murmur. I am positive you can comprehend what I am saying and I know you are relieved. She spent about a year in recovery mode. I danced with her in my arms.
Last year, on a sunny day like this, I gave birth to a beautiful baby girl. A girl given the most beautiful name in the world. Today, she is reborn, this time in a healthy physique.