• How our family survived our son's cancer diagnosis: Kate's story

    CalebKate's son, Caleb 

    Our 22-month old son, Caleb, was running around his playroom, wearing only a diaper. I stood watching from the doorway as my husband, Josh, tried to reason with him to lie down and get dressed. I noticed a small bulge on his right side.

    As a nurse, I knew I should take him to our local hospital right away. From there, we were sent immediately to the emergency room at Boston Children's Hospital, where we learned that Caleb had Wilms' tumor, a rare childhood cancer of the kidneys, and would have to have a kidney removed.

    Once he became a patient, it was very painful for us to watch him try to make sense of what was going on around him. When he got his first intravenous line in the emergency room, the nurses had to hold him down. Caleb kept crying, "No thank you, no thank you." He was using his newly learned "magic words" — the "pleases" and "thank yous" that usually got him what he wanted. But not this time.

    He called the surgeons "naughty" for holding him down in a fourth attempt to get a tube up his little nose to administer his drugs. He turned red and screamed. I secretly agreed with him that the surgeons were naughty. I wanted to scoop him into my arms and run far away.

    One of the most agonizing moments for me as a mother was the time Caleb's nurse entered the room to place yet another intravenous line. Caleb had gotten into the habit of running to me whenever anyone wearing scrubs or a lab coat entered his hospital room. This time, he glanced in my direction with a panicked expression, and ran to hide behind the curtain.

    He no longer trusted me to protect him from being hurt, and he was too little to understand my explanations. I wanted to tell him that I would never let anyone hurt him, but I could not. My only option was to pick him up, tell him it was okay, and let the nurse proceed with placing his IV.

    The nurses at Children's were compassionate and skilled at handling Caleb. When he was in surgery, the surgical nurse liaison informed us every hour about how he was doing. Caleb's surgeon, Christopher Weldon, MD, PhD, made us feel like he understood exactly what parents go through when their child's life is in his hands. He even thought to step out between procedures to reassure us.

    At Dana-Farber's Jimmy Fund Clinic, where he went for chemotherapy, Caleb looked forward to the huge playroom filled with children and toys, the volunteers, and the familiar faces of the nursing and front-desk staff.

    During our long days in the hospital, we updated our family and friends through our CarePage (offered through www.carepages.com). We also checked it regularly to see all the comments, virtual gifts, and new pictures posted by our family and friends.

    Caleb has completed all his treatments and surgeries, and he is thriving. We can look through our CarePage to reflect on our feelings during his hospitalization and treatments. It is safer now to allow ourselves to feel weakness, sadness, and pain - emotions we could not express in the middle of the ordeal.

    Looking back, we realize that the energy generated from the love and support from our friends and family provided us not only with strength, but also with the ability to feel pleasure and laughter, even in our darkest moments.

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