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TrachKid Profile

When Joshua was 4 years old he was diagnosed with Ewings Sarcoma of his c-6 neck vertebra in October of 2004.  He was treated with the typical Ewings protocol of 14 rounds of chemotherapy (Doxorubicin, Ifosfamide, Vincristine, Cyclosphosphamide and Etopaside) and 31 proton radiation treatments.  The tumor was inoperable.  After the fourth round of chemo the tumor was gone, but his C-6 vertebra was near collapse.  He wore a neck brace for the year of treatment.  The proton radiation was administered to his C-3 to T-1 vertebra as that is where the tumor area was located.  The total dosage was 55.8 Gy.  When he finished treatment in August of 2005, we discovered Josh's trachea was stenosed, his esophagus had a stricture and his thryoid wasn't functioning.  He was given a tracheostomy after 2 weeks of no sleep due to his loud, difficult breathing at night.  He was given a g-tube so we could feed him.  We also began dilating his esophagus through a sedated day procedure approximately every 6 weeks for 3 years in order to try and stretch open his esophagus so he could eat.  His last esophageal dilation was in June 2008!  And all of his nutritional needs are currently met by mouth!  After about 3 tracheal dilations we tried to decannulate him in 2008, but it only lasted for 3 months.  His breathing was loud and frightening.  He had a sleep study which showed 24 obstuctive apnea episodes and 4 obstuctive hypopnea episodes.  This is also when we discovered his vocal chords are partially damaged from the radiation.  They do not open all the way.  Josh began to be afraid to go to sleep, because his breathing was getting more and more difficult.  He kept asking me if he could die in his sleep.  His tracheotomy was put back in in January of 2009 when it was discovered his tracheal scarred area was almost completely scarred shut.  Luckily we had not surgically closed his stoma.  Josh continues to be monitored for cancer recurrence.  This August is his 4 year post treatment anniversary.  When he hits 5 years past treatment, in August of 2010, with clear scans, he will be considered in remission.  After treatment his neck was shown to be "near collapse, but stable at this time."  His neck stability also continues to be monitored closely.  He is not allowed to jump on trampolines, play any contact sports or go on roller coasters.  Josh loves to rock climb, build with Legos, go fishing with his daddy, take things a part, play on his Wii, or watch the Disney channel.  Josh is loved by his parents and his 4 older sisters.  He's also a wonderful uncle to baby Cyrus born in 2009!
Our biggest goal right now is to find an older male (teenager or young adult) or peer his age, who is well adjusted to living with a tracheotomy (who doesn't have any other major disabilites), so  that Josh can connect with him and be encouraged. 

• Gender: Male
• Demographic Region: North America
• Siblings: More than three
• Medical Conditions: Tracheal Stenosis, Esophageal Stricture, Hypothyroidism, Ewings Sarcoma of the C-6 neck vertebra, partial vocal chord paralsys

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2 years 37 weeks

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United States

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Oregon