In October 2012, Caroline complained of her right forearm hurting. It didn’t look any different and later in the day she said it didn’t hurt any more. A few weeks later, she complained again with the same results. For the third time, in late November, she complained that her arm hurt. We were in the bathroom, getting her ready for school. I told her to pick up the bottle of sunscreen and asked if that hurt. She said yes. I then had her hold a box of bandaids and she said that didn’t hurt. I was more concerned so I made an appointment with her dr. He listened and then took a look at her arm. He thought her right forearm was slightly larger than her left so he sent us for an X-ray. That X-ray showed changes in the bone which were most consistent with a bone infection though he warned me that malignancy was a possibility.
Caroline had an mri the very next day, Friday November 30. The results from the mri still seemed to point to a bone infection. Our dr told us that we would need to meet with a pediatric orthopedist and get treatment.
The following Monday, her pediatrician called me. He was concerned that while the mri looked like a bone infection- there was no sign of infection in her blood work. He said it could still be a malignancy. He sent us to Phoenix to get a bone biopsy done with a specialist. We met with the specialist on Tuesday and she had a surgical biopsy done on Wednesday- less than a week since I had first taken her to the doctor.
We got the call Friday, December 7, 2012 that it was not a bone infection. It was cancer. A type of bone cancer called Ewing’s sarcoma.
After x-rays, a bone scan, chest CT, and PET scan it was found that Caroline’s cancer is localized in her arm. None of her scans showed evidence of cancer anywhere else. This was the best possible news and gives us the best possible prognosis.
We chose to enroll Caroline in a medical study being done for patients with localized Ewing’s. It involves adding a different chemo drug to the standard protocol to try and prevent recurrence of the cancer. Caroline is on the experimental branch of the study so she is getting another chemotherapy in addition to the ones included in the standard protocol of treatment. Our hope is that this will give her an even better chance of never having a recurrence.
Caroline has undergone 14 cycles of chemo and major surgery to remove the tumor in her arm. She still has 3 more cycles of chemo left. She has spent over 100 days in the hospital and missed almost a year of school. Caroline is incredibly brave and caring. Our hope is that she will be cancer free at the end of this treatment.
Conner is 4 with Ewings Sarcoma. Conner is a super sweet, often soft spoken, funny, 4 year old. He says the funniest things, probably because his sister is 16 and brother is 18. 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, my husband had a “V”. Fast forward a few years and we didn’t feel “complete”. 10.5 years after the “V” my husband had a reversal. It was a success and within 2 months I was pregnant with Conner. Conner is our family’s blessing. Conner has taught the older two what true unconditional love is.
The “journey” started the day our household goods were being loaded in a moving truck for our PCS from Abilene, TX to Colorado Springs, CO.
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 21st, 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. 6 Days later on 1/27 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 2/5 he finished his antibiotics. On 2/8 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 alarge “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 Xray was taken the next day, when the Xray showed no shrinkage of the “mass” they ordered a CT scan for Monday 2/11. Conner was careflighted to Cooks in Ft Worth that night. On Tuesday 2/12 Conner underwent surgery for what the surgeons called a “cystic” looking mass. After surgery the Dr’s told us it was a Small Round Blue Cell Tumor. Pathology reports came back on 2/14 which diagnosed him with Ewings Sarcoma. A highly aggressive Bone Cancer. Since we were in the middle of a PCS to CO, we asked to be transferred immediately for further testing. We drove overnight to begin treatment in CO. We arrived at Children’s Hospital in Aurora, CO in February. Conner loves sports, his siblings & being a Wylie Bulldog. He loves going to the football games, watching his sister play soccer, & playing with his brother.
Kaiden is an exuberant and bright 5 year old, who is wise beyond his years. Most folks fall in love with him instantly because he has never met a stranger. He’s an amazing big brother to his baby sister, Lucy, and shows her so much love and affection! He loves all things cars and vows to own a purple Volkswagen Beetle with smiley face hubcaps when he’s older. He also said he wants to design Hot Wheels cars and real cars when he grows up. Hearing him talk about his future always reminds me of how far we have come. There was a time, not too long ago, when I didn’t know if he would live to see 5, let alone adulthood.
On March 25, 2010, when Kaiden was just two and a half years old, he was diagnosed with cancer. After an extensive brain surgery, we were told it was a highly aggressive, very rare Grade 4 malignant tumor called a supra-tentorial Primitive Neuro-ectodermal Tumor (sPNET). When speaking with our oncologist, she gave us grave odds at Kaiden beating this cancer. Her words were, “The odds are not great. They are not zero, but they are not good either.” She introduced us to a very aggressive treatment plan which included; 4 months of intensive chemotherapy to take place on a weekly basis in the hospital, 6 weeks of intensive radiation to the brain, followed by six months of oral chemotherapy. We were told of the many side effects and issues children who survive cancer have to deal with. If the cancer didn’t kill Kaiden, the treatments very well could or at least cause such severe side effects that our child would never be the same.
In June 2011, Kaiden’s first scans off treatment came back clear. We started to feel a spark of hope that Kaiden had beaten the odds. He has shown very little side effects from his treatments aside from the horseshoe shaped scar across his head and a small bald patch from the radiation. Our lives are showing some semblance of normalcy again and with each clear scan Kaiden receives, we feel more and more hopeful. Kaiden will continue to get scans throughout the years and the fear of cancer returning will always be apart of our lives.
Throughout his treatment, Kaiden maintained a positive, never give up attitude. I have learned so much from my boy during this journey. He took it in stride, rolled with the punches and continued to trust us, even when we had to hold him down so the nurses could administer treatment. He now bears a battle scar on his head, reminding us of what cancer tried to take. He is a warrior, he is fierce, he is Kaiden, The Destroyer, and cancer never stood a chance!
Alexis was 3 when she was diagnosed with Ewing Sarcoma. It is a bone and soft tissue cancer that was located in her right maxillary. She has been in remission for 14 years. Alexis is currently have multiple surgeries to correct some of the damage that was caused by the radiation and chemotherapy. As you can tell from these photos, she is a beautiful young lady!
