Keanu Paulino, 4, Pleuropulmonary Blastoma (PPB)
Responses provided by Keanu’s mom, Kristine Aldana-Paulino
Keanu is our loving, silly, determined, spicy (gives a mean side eye), 4 year old son, on the spectrum and diagnosed with Type 3 Pleuropulmonary Blastoma.
How would you describe Pleuropulmonary Blastoma to a child?
One week before Keanu’s 4th birthday he was diagnosed with a very rare childhood lung cancer called Type 3 Pleuropulmonary Blastoma (PPB). Keanu’s symptoms included a cough that would not go away, trouble breathing, fevers, loss of appetite and weight loss. Tests showed that a large solid tumor in the left side of his chest had collapsed the left lung and displaced his heart, airways and caused complications to other organs. PPB is a fast growing cancer that forms in the tissues of the lung and pleura and type 3 tumors are solid tumors that often spread to the brain or other parts of the body.
What does it feel like to live with?
In support of his respiratory failure he underwent a tracheostomy which is when a hole in your windpipe is made to help breathe. A tracheostomy tube, called a trach (pronounced “trake”) tube is inserted through the hole and into your windpipe. This does cause Keanu’s sensitivity to the trach to limit use of his own voice or swallow therefore he uses a feeding tube to get his nutrition and points or uses facial expressions to communicate. During the day Keanu wears a Heat Moisture Exchanger (HME) which provides humidification, maintains thin secretions and prevents mucus plugs when he is breathing room air. At night he is connected to a CPAP machine that sends a steady flow of pressurized air as he sleeps. This keeps his airways open and helps to breathe normally.
After completing 12 weeks of chemotherapy (infusions to shrink the tumor) he experienced a seizure and underwent a craniotomy (brain surgery) to remove a lesion and bleeding that formed. From there we learned that disease metastasized (spread) to his brain. Thankfully he recovered quickly from brain surgery and just two weeks later had his long awaited lung surgery (lobectomy) to remove the remaining lung tumor and lower left lobe of his lung which the tumor encapsulated.
Next steps on his road to kick out cancer is radiation treatment to target cancer that spread to his brain followed by chemotherapy to treat any microscopic disease. Over time he will have the trach removed and receive chemotherapy as an outpatient.
Despite Keanu’s intensive medical care, speech and communication limitations from the trach and autism, he has shown bravery and resiliency while being authentically himself. As the words from his favorite story book (Pete the Cat, I Love My White Shoes) ring in my head and ring true:
“No matter what you step in, keep walking along and singing your song…because it’s all good.” - Story by Eric Litwin
What brings you joy?
While in the hospital, Keanu keeps himself happy by following a routine which includes walking around the units while giving hugs and high fives to medical staff along the way, playing basketball, watching Bluey and having Pete the Cat read to him. What brings him joy is seeing his older brother during a visit or FaceTime.