Childhood Cancer

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Caroline Johnson

  • Hepatoblastoma

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At 14 months of age Caroline had been suffering with several bouts of recurrent illness; including upper respiratory infections and ear infections for months. Caroline had been fussy since birth and always had gastrointestinal problems; she was treated for acid reflux from 2 weeks of age until her first birthday. Caroline was an active child and always on the go. On Friday, January 15, 2010 Caroline's mother, Leighanne, noticed a mass in her belly during a diaper change. Caroline had been very lethargic since the beginning of January and her healthy appetite had decreased significantly. Caroline's Mom and Dad (Aaron) took her to her family doctor on January 16, 2010. There they did an x-ray of her abdomen and found a "slightly enlarged liver," but were not concerned with the results. They scheduled her for a follow-up in a week to review her symptoms and diagnosed her with another ear infection.

However, Caroline's Mom and Dad were concerned with the possibility of an "enlarged liver" and took her to the closest Children's Hospital the following day. It was Sunday, January 17, 2010 and Caroline was at the Urgent Care at a Children's Hospital, an hour from their hometown. Caroline had another x-ray, which lead to blood work and an ultra sound. The doctor came in to break the news; she told Caroline's Mom and Dad that she had cancer, probably hepatoblastoma (a rare childhood liver cancer) and that they were admitting her to the Oncology unit that night. It was shocking. Our family did not know what to think; to top it off a 1-year-old boy we knew was just diagnosed with peripheral t-cell lymphoma. We had thought that we couldn't imagine something so terrible happening to our child.
 
Things moved very quickly from this point forward. Caroline was admitted to the hospital with an unofficial diagnosis of hepatoblastoma on Sunday, January 17, 2010. On Monday, January 18, Caroline's parents met with a variety of doctors and a surgeon. Caroline had several different tests to prepare her for her biopsy and chemotherapy. The tests included a CT, MRI, hearing test, GFR kidney function test, EKG and Electrocardiogram. On Wednesday, January 20, 2010 Caroline had the biopsy of her liver, which was done laparoscopically, and it was confirmed through pathology reports that she had Stage III hepatoblastoma (liver cancer). This cancer is one in a million, according to her doctors.
 
On Friday, January 22, Caroline began her first round of chemotherapy which included four drugs: Cisplatin, Doxirubicin, 5FU, and Vincristine. Caroline has since had three rounds of chemotherapy. Each round takes a lot out of her. Caroline has a feeding tube which was placed two days after the beginning of the first round of chemotherapy because Caroline refused food and drinks. Caroline spends a lot of time in the hospital because she becomes neutropenic during her 21 day chemotherapy cycles and carries high fevers. Caroline's tumor responded very well to chemotherapy and they have been able to perform a tumor resection (initially Caroline’s tumor was inoperable due to its size; it took up 2/3 of the liver).

On Monday, March 29, 2010 Caroline had her tumor resection surgery. The surgeon removed 85% of her liver, her gallbladder and 5 lymph nodes. Caroline's family prayed that the cancer would be gone after surgery but unfortunately there are still active cells (viable cancerous cells) left in the remainder of the liver. Caroline will undergo 3 more rounds of chemotherapy and then have scans to follow up her treatment. Caroline is such an amazing spirit. She has overcome obstacles that many adults could not handle and she has succeeded with amazing grace! She is a trooper and a fighter and as she continues her battle with cancer her family knows that she will stay strong and WIN THE FIGHT!

Update: November 15, 2012

Caroline is a healthy, happy, sassy four year old! After her liver resection, Caroline completed her last three rounds of chemotherapy; she had some ups and downs but she finished her last chemo at the end of July 2010. Caroline continues to have clear scans and this August celebrated TWO years being cancer FREE!!! Caroline has hearing aids caused by being treated with cisplatin but they are not holding her back. She is in her second year of a developmental pre-school and will transition with no problems to a regular kindergarten classroom. We have been blessed with an amazingly strong willed little girl. She is so resilient and courageous; we hope that she can be an inspiration to others fighting this difficult battle.

- Leighanne and Aaron Johnson (Parents)

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