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Hattie's Cancer Journey

My daughter Hattie was diagnosed with a rare form of cancer called botryoid rhabdomyosarcoma in July 2013 when she was 16 months old. After about a year and a half of chemotherapy, radiation and multiple surgeries, she was declared cancer free in December 2014. I'm posting a photo and short reflection every day in 2015 to celebrate the end of treatment and reflect on the journey.
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47. 9/12/2013 - Swallow tests and NG tubes.
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47. 9/12/2013 - Swallow tests and NG tubes.

We went in to Children's for a swallow test. This consisted of mixing barium sulfate with different thickness liquids and watching the swallow process with x-rays. Hattie wanted nothing to do with the various liquids so it was quite a battle.

I waited at the hospital with Hattie while Kate ran to the airport to pick up her mom. Results came back that she was aspirating liquids, which could lead to pneumonia. The solution was to place a nasogastric (NG tube) to deliver liquids directly into her stomach. Fortunately, she was handling solids just fine so she could still eat.

By the time results came in, it was too late to have the NG tube placed at clinic or on the oncology floor. You know what that means... we had another trip to the ED! It was rough.

The NG tube placement consists of lubricating the tube and inserting it through the nose and down into the stomach. The first attempt at placement was unsuccessful. We had two nurses and me hold Hattie down while another snaked the tube up her nose. The tube got in, but then we could not tape it to her face because of all the tears.

We let Hattie cool down a bit and then tried again, this time with tape on her face to serve as anchors before the maneuver was attempted. This attempt was successful... only for her to tear it out as we were waiting to be discharged. The third time was finally the charm and we left just a touch after midnight.

  • 46. 9/10/2013 - A cough and no chemo.
  • 47. 9/12/2013 - Swallow tests and NG tubes.
  • 48. 9/13/2013 - Back to clinic for another NG tube placement.
  • 49. 9/14/2013 - Kate's new job.
  • 50. 9/16/2013 - All smiles
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