September Warrior – Conner

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Crusade: “Any vigorous, aggressive movement for the defense of a cause.” Conner is 6 years old and was diagnosed with Ewing’s Sarcoma. Conner is an Air Force Military Child. Conner loves sports, his siblings, and being a Wylie Bulldog. He loves going to the football games, watching his sister play soccer, and playing with his brother.

Conner is a super sweet, often soft spoken, funny, 6-year-old. He says the funniest things, probably because his sister is 17 and brother is 19. Conner was very much our “miracle” baby to start with. My husband and I are High School sweethearts. We got married at 18, had first born at 21, second born at 23. We thought we were done and my husband had a “V.” Fast forward a few years and we didn’t feel “complete.”  Ten and a half years after the “V” my husband had a reversal. It was a success and within two months I was pregnant with Conner. Conner is our family’s blessing. Conner has taught the older two what true unconditional love is.

I’m happy to report on December 6, 2013, Conner received his last round of chemo! HOPEFULLY FOREVER!

In these nine months, three weeks since diagnosis, Conner has endured a Bone Marrow Aspirate, a Biopsy, 3 surgeries (port placement, tumor biopsy/removal,and tumor resection/chest reconstruction), has gone under general anesthesia seven times, 75 days of Chemo, 156 doses of the six different chemotherapy medicines (Vincristine, Topotecan, Cyclophosphomide, Ifosfamide, Etoposide, and Doxorubicin), 67 days being connected to IV fluids 24/7, 107 Clinic Visits, 42 CHoC visits, 7,874 miles driven for care, 14 times being neutropenic, 10 pain meds (morphine, oxycodone, valium and such), 92 Pokes (Blood draws, Port Accesses, Shots, Arterial lines, and IV’s), 1 Chest Tube, 24 Scans – (CT, PET, Bone, ECHO, EKG, MRI, Xray), 17 neulasta shots, 11 Blood Transfusions, 4 Platelet transfusions, 4 unexpected trips to the ER, 4 fevers that required a trip to the hospital, 26 Overnight hospital stays, 1 night in the PICU, an ambulance ride, and a care-flight helicopter.

The “journey” started the day our household goods were being loaded in a moving truck for our PCS from Abilene, Texas to Colorado Springs, Colorado.

What started with a trip to the urgent care for possible pneumonia has turned into a journey that no one ever wants to walk down.

On January 21, 2013, Conner had a fever of 103.5.  We took him into the urgent care and he was diagnosed with an upper respiratory infection and given a 5-day Zpack.  Six Days later on January 27, his tonsils looked “large” so we took him back to the urgent care where he was diagnosed with strep. He was given Amoxicillan for 10 days. On February 5, he finished his antibiotics. On February 8, the school nurse called and said he had a fever of 100.2, we then took him to urgent care again where the doctor wanted a chest X-ray to check for pneumonia. They found a large “mass” on his upper left lung. We were then sent to the ER at Abilene Regional Medical Center where Conner was later admitted. Conner was put on IV Antibiotics and another X-ray was taken the next day.  When the X-ray showed no shrinkage of the “mass,” they ordered a CT scan for Monday, February 11. The CT scan showed that the mass was not in his lung, but in his chest wall instead. Conner was care-flighted to Cooks in Ft. Worth that night. On Tuesday, February 12, Conner underwent surgery for what the surgeons called a “cystic” looking mass. After surgery, the doctors told us it was a Small Round Blue Cell Tumor.

Pathology reports came back on February 14 which diagnosed him with Ewing’s Sarcoma, a highly aggressive bone cancer. Conner’s tumor was in the soft tissue of the left upper chest wall. Since we were in the middle of a PCS to Colorado, we asked to be transferred immediately for further testing. We drove overnight to begin treatment in Colorado. We arrived at Children’s Colorado hospital on February 15 for further testing – Bone Scan, Bone Marrow Aspirate, PET Scan, MRI –  all of which indicated that his tumor was localized. Conner is participating in a study and he has been randomized on the experimental side. His rounds of chemo will include VTC, IE, and VDC. Vincristine, Topotecan, Cyclophosphomide, Ifosfamide, Etoposide, nad Doxorubicin.

Conner started his first round of chemo on February 21 (VTC) and was discharged on February 25 after 18 days in the hospital. Conner completed his second round (IE) of chemo on March 15. Conner completed his third round of chemo on March 29 (VDC). Conner completed his fourth round on April 15 (IE). Conner completed his fifth round on April 29 (VTC). Conner completed his sixth round on May 10 (VDC). Conner had the first six rounds of chemo and then extensive chest wall surgery which removed the remainder of the tumor (with good margins), two to three ribs, and surrounding tissue.

Conner’s surgery on May 31 went well and they got all of the tumor and good margins.  He was declared NED (No Evidence of Disease) on June 7, 2013.  Conner went on to complete 17 rounds of chemotherapy.  Conner’s “End of Treatment” day is December 16, 2013 and his MRI, CT, and PET scans were on December 18, 2013, with NED CLEAR SCANS! Conner’s port was removed on December 23, 2013 .  We are looking forward and not back!

Conner just celebrated his 6th birthday on July 21.   His 3 month scans were clear! His six month scans were done AWAKE (without sedation) and CLEAR! Conner’s only lasting side effects are the extreme sun sensitivity and the Neuropathy from the Vincristine. He will sometimes walk on his tippy toes and his feet and legs cramp up. His orthopedic surgeon says he already has mild scoliosis from the removal of his ribs. These are things we can LIVE with… Very blessed!

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If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story.  Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!