It all started in late May, 2005. Bradley was living with us in Columbia, Maryland, situated in between Baltimore and Washington, DC. He'd lived with us since middle school and was set to graduate from high school in June. B's post-graduation plan was to move to San Antonio, Texas, where his mom lived. He'd work for a year, then go to college or tech school. In May, B went to visit TX to prepare for the upcoming move. Once there, he started having sharp pains in the area of his right ribcage and a lump had formed on his chest. He chalked it up to a Lacrosse injury. He'd been hit hard in practice sometime in April. The pain increased over the course of three nights. One night, his mom found him lying on the floor. She asked why, and he said it was because he thought the hard surface would ease the pain. The next day, they went to the emergency room of Northeast Baptist Hospital where they did a chest X-ray. It showed a large mass in his lungs, so he was admitted for further tests. At first, they suspected tuberculosis (imagine, we thought that was terrible!). He was put in a private room and anyone going near him had to wear a face mask. He said it was really weird being treated like a contagious person. After TB was ruled out, he had a CT of his chest.
5/27/05 Test Results
CT Angio of the chest with and without contrast
The sizes of masses recorded in the report:
Large tissue mass adjacent to rib #6 that showed destructive changes 10.5 x 5.5 x 9.4 cm. A tumor over 8 cm is considered unfavorable for prognosis.
Extrapleural mass in the posterior left hemothorax near the apex 3.2 x 4.2 cm
Plural-based masses 1.7 x 2.4 cm, 2.2 x 3.1 cm, 2.2 x 1.2 cm and 2.8 x 3.6 cm
Left hemidiaphram 2.2 x 1.7 and 4.7 x 4.6
Bradley was given vicodin for pain relief. His only symptom at this point was chest pain. The primary mass on his ribcage was easily visible on his side.
CT-guided, thin needle biopsy of soft tissue mass in left chest wall. Lidocaine for local anesthetic.
Final pathology from biopsy is completed. The biopsy found he had Ewing’s Sarcoma/primitive neuroectodermal tumor (ES/PNET). Ewing’s tumors of the chest wall are also referred to as Askin tumors. Genetic testing was also done to confirm the existence of “chromosomal translocations” associated with Ewing’s Sarcoma. The local oncologist contacted Dr Benjamin of MD Anderson in Houston and he provided the standard protocol COG-AEWS0031. http://www.cureourchildren.org/AEWS0031.doc
Elizabeth and Brad’s first trip to San Antonio. Thinking that Bradley was a Texas resident, the local oncologist recommended that Bradley be treated at MD Anderson in Houston. Treatment in Houston wasn't realistic for us due to the distance from both of B's parents.
We met with B's local oncologist, who explained that this cancer is so rare it requires more expertise than most local cancer centers can deliver. She was going to start his first round of chemo, following the standard protocol, but recommended we look into a long-term solution.
It seemed like a cut & dried decision, to transfer his care closer to home. However, the situation was very tense, made more difficult by the fact that B's friends from Maryland would begin arriving within a couple of months. He looked forward to a year of parties and special time with his girlfriend, along with getting some work experience. Seems like a lot of young adults were drawn to the San Antonio area - cheaper (shared) housing and availability of entry level jobs. B's mom had been looking forward to spending time with him again. So B wanted to proceed with his move to TX, fly to MD for chemo, then fly back to TX for the 2 weeks in between rounds. Of course, I was worried about the cost, but that turned out to be the least of our worried. It didn't take long for us to be reminded, in more elegant terms, that airplanes are big germ boxes. B couldn't risk all that air travel. Fortunately, he understood and agreed.
Due to the aggressive nature of the cancer, chemo would begin immediately, administered by the diagnosing, local onc. She explained that B's immune system was going to take a clobbering and he would be "immuno-compromised" for at least one out of every 3 weeks for the duration of his treatments, about a year, and beyond. Even a common infection could be fatal to him. She advised us that he had to avoid crowds as much as possible, especially in enclosed areas.
We weren't going to be able to provide the level of support B was going to need long-distance, so we started looking into the major cancer centers in Baltimore, looking to get him back home after all the initial tests were done. There would be a lot of tests, a lot of driving around to different doctor offices around San Antonio. If there was a cancer center in the area, we didn't know about it and didn't know to ask about it. We were all in shock, scared and struggling to manage day-to-day tasks as we came to terms with the enormity of the situation.
MRI Cervical spine without contrast
MRI Thoracic spine without contrast
MRI Lumbosacral spine without contrast
MRI Pelvis without contrast
Surgery to put in a Mediport implant for chemo. The port is used to delivery chemo and fluids as well as to draw blood for tests. This saves him a lot of pricks and pokes along the way.
NM Bone Scan Whole Body. Big sigh of relief as it showed no marrow involvement and no distant mets.
Glucose 83, BUN 9, Creatinine 0.8, Sodium 139, Potassium 4, Chloride 100, Co2 24, Calcium 9.4, Total protein 6.9, Albumin 3.9, AST 25, ALT 15, Alkaline phosphate 152 (normal is 30-100), Bilirubin 0.8, White count 4.5, Hemoglobin 15.4, Hematocrit 44.8, Normal MCV 87.3, Platelets 228,000
We returned to MD with plans to return to TX for B's first round of chemo. During our week at home, we made our best effort to arrange for care. On advise from our primary care doctor, we scheduled an appointment with a local oncology group for 6/28 (this date comes up again). On advise from family, we “let the doctors talk to each other” and move us up the chain to the next level of care. We met with a representative from our company’s employee assistance program (Brad and I work for the same company). She offered suggestions, helped us organize our questions for the doctors and worked with us to identify the things we should do right away. That included having physicals ourselves, meeting with our managers and HR to work out flexible schedules and set expectations. We got a list of cancer-related support groups in our area, but none was appropriate for our situation.
6/13 – 6/21/05
Eliz and Brad second trip to San Antonio for chemo week #1