Two days before Thanksgiving we met with the radiologist and the day after that we met with the oncologist. Not a great way to spend the holidays. The pathology from Bradley's surgery showed the tumor sites in the rib area and the chest wall were completely resected successfully with negative margins. The biology of the removed specimens showed 20-40% necrosis (cancer cell death), which is not good. We’d hoped for at least 90% necrosis, leaving only 10% or fewer viable cancer cells. He would not have needed radiation if there had been a higher rate of necrosis. It gets confusing, because, as it was explained to us, the initial rounds of chemo are primarily intended to kill the sarcoma cells that are circulating in the body's system. The surgery and radiation then deal with the primary tumor site(s). Lastly, the chemo after surgery/radiation is supposed to clean up whatever's left. So, there are cases in which necrosis isn't very high, but the patient is able to achieve long-term remission. I guess it all depends on how aggressively the cancer is growing/spreading before treatment.
Bradley got a short round of chemo today (VC, #6) and started radiation next Monday. This required him to go to radiology every day for 5 weeks, 10 days of both lungs and the ribs, followed by 15 days of the rib area only. He'd lose some lung function, 10-20% of the left lung, but the docs said we all have more lung capacity than we ever use so that wouldn’t present any long term problems and he probably wouldn’t even notice it. The main side effect is fatigue, which builds up over the 5 weeks. He might also have soreness in the esophagus towards the end. There were some risks. A combination of radiation with some medications and chemo stresses the heart, so they were going to be cautious in using chemo, not so much because of the chemo itself, but to avoid using the white blood booster during radiation. There was also a chance of "radiation pneumonitis" which is an inflammation that occurs after the therapy is over in 10-15% of patients and is treated with anti-inflammatory steroids. B was done with the doxyrubicin (max for him is 375 of whatever units they measure by and he's had 360).
There is a downside to radiating the lungs. They do it because 60% of relapses occur in the lungs, yet the radiation increases his risk of secondary tumors in the radiation field. I couldn't fathom getting past ES only to fight another type of tumor down the road. Fortunately, Bradley was in good spirits, weaning off the pain medication and moving around more easily. Over the holiday, he had a good visit with his girlfriend and had lots of friends over. Bradley is now 5’ 11” and 148 lbs, which wasn’t bad after what he’d been through.
Dr Sausville 11/28-11/29/05 Chemo #6 VC (2 days) 2 hours fluids, 1-hour chemo, shot of Vincristine Hydropack for 24 hours No Neulasta due to upcoming radiation
CBC to make sure he can start radiation
12/05-12/16/05 10 days radiation to whole lung and ribs
12/06 Dr Sausville
12/13 Dr Sausville
12/16/05 Chest X-Ray and follow up with surgeon.
12/19/05-1/06/06 15 days radiation to ribs only
12/19-12/23/05 Chemo #7 IE during radiation No WBC Booster/Neulasta The combination of chemo and radiation was extremely difficult. The chemo was given at the infusion center on one end of the 2-block long building and the radiology department was on the other end. B would have chemo in the morning and radiation was scheduled for 3:00. Some days, we had to wait a long time for radiation, which was very hard for Bradley. After chemo, he wanted to go straight home to lie down and there was no comfortable place for a sick person to wait in the radiology waiting room.
Radiation made him very tired and created sore, red areas on his chest. He slept a lot and wasn’t eating well, so he started losing weight. Our winter holidays were eerily quiet, and we worried about radiology being closed for two weekdays for Christmas and New Years Day. It had been impressed upon us that B absolutely had to be there every single day, but yet it was okay for him to have days off when THEY wanted a day off? We fretted about the weather and scoped out hotels near the hospital that we could stay at if the forecase were really terrible. It was during this time that his mother and step-father moved back to San Antonio.
12/27/05 Dr Sausville
1/06/06 Dr Sausville
1/09/06 On the original schedule, chemo #8 should have started today but was pushed back by the delays in WBC and RBC recovery. Dr S wanted B to be as recovered as possible before his upcoming move to San Antonio. He was originally scheduled to leave on 1/11, but that was delayed until we knew he wasn’t going to get #8 in before he left. There were visible nodules growing around the surgical site. Dr S said it could be keloids, which are common in African American men after surgery. Dr S pulled Brad aside for a private conversation and told him that, if Bradley were a 40-year old man, he would be telling him that if there was anything he wanted to do – i.e trip to Jamaica – he should do it now. The prognosis is not good. Brad didn’t have to ask what Bradley wanted as he’d made it clear he wanted to go to San Antonio to be with his girlfriend.
1/17/06 Bradley had an appointment with Dr S at 9:30 and flew out of BWI for San Antonio at 12:45. His mother and stepfather had moved into a house divided into apartments and arranged for him to rent one of them. Once Bradley was in Texas, he experienced repeated delays in treatment and continued to lose weight.
1/18/06 Texas onc.
1/20/06 Chemo #8 VC The doctor in Texas didn’t have him carry around fluids in a backpack like he did here, so he may have been under-hydrated.
2/04/06 Hospitalization for severe headaches. Bradley underwent not one, but two spinal taps to rule out meningitis. The first sample was deemed to be contaminated.
2/06/06 Should have been start of Chemo #9. Delayed due to hospitalization for headaches.
2/13-2/14/06 First 2 days of Chemo #9 IE (5 days total). Chemo stopped due to low counts and weight.
2/22-2/24/06 Last 3 days of Chemo #9 IE (5 days total) During this time, the TX onc called Dr Sausville and advised that Bradley should be returned to the larger hospital setting for tests to determine why he continued to lose weight and his counts were not recovering from chemo.
2/25-2/27/06 Eliz and Brad flew to San Antonio. After taking Bradley shopping for some things for his apartment, we met with the Texas onc. She told Bradley that as much as she loved him and having him as a patient, she was unable to manage his issues with weight loss and slow count recovery. She told him that he needed to go back to the Big Hospital for evaluation to see why he was having so many problems. She told us that she suspected his cancer has recurred. Bradley was having pain in his back that he didn’t think was because of the spinal taps.
2/28/06 Bradley returned to MD from San Antonio. His plans were to do whatever tests Dr S wanted and then return to San Antonio for further treatment.
3/03/06 Dr Sausville Dr S told us that the only curative option after the failure of standard treatment is a bone marrow transplant. However, that’s only an option if 1) the marrow is clear 2) weight and responsiveness to chemo improve and 3) a match can be found in the registry in time. As a mixed race child with no full blood sibling it was unlikely that a match could be found. Bradley’s back pain was getting worse and making it hard for him to get comfortable in any position. An MRI of his back and bone marrow biopsy were scheduled.
Excerpt from a post I made to ESARC list on this day:
"After looking at the CT and full body scans we brought from TX, and comparing the scans with those done before surgery, he sees what may be new cancer growth in the chest wall, thickening of the pleura and some abnormality in the lining of the lung wall. He explained that this would be a very big deal if in fact the tumor has not been held in check by the chemo and radiation, considering it's been such a short time since the end of radiation. It COULD be some other type of infection or another type of tumor. He wasn't so concerned about the lumps in the rib area, as african-americans (B is bi-racial) tend to get keloids in areas of radiation, but this complicates diagnosis. The plan is to 1) do a PET scan to measure metabolic activity of the abnormal area 2) get another biopsy, this one in an area that was NOT in the field of radiation as the one in TX was. He said radiation causes fibrosis/keloids therefore the choice of the site for TX biopsy wasn't the best. 3) do a bone marrow test to see if he's a good candidate for BMT. He gave a pretty dismal outlook, to be honest: BMT is the best "curative" option, but for Ewings, even that isn't proven. He mentioned Phase 1 and 2 trials and research of other treatments for recurrence, but came right out and said they would be palliative, not curative, and that this probably wasn't what we would want for a 19-year old. To top it all off, B said he would want the BMT done in TX. He did have some kind of meeting with BMT people in TX, but we don't know what he was told. He's taking a lot of pain meds, sometimes has trouble remembering common words, so we can't trust his ability to make decisions. In his mind, he only came back here to get the diagnosis clarified. So we're faced with the choice of refusing to send him back ... or accepting his choice, going back with him to see his place properly cleaned and set up and travelling back and forth ourselves. And if he's so determined to be in TX, what point is there in researching clinical trials outside of both MD and TX? His father is devastated ....For now, we wait for the PET. Who knows, it could be something else! And, of course his counts are low, so there will be transfusion on Tuesday."
3/07/06 MRI of back showed that the cancer had spread to his spine. He was therefore not eligible for BMT and wasn’t strong enough to start a new regimen. Today, for the first time in a while, Bradley ate well, was up and around, and sociable. He ordered two entrees from Macaroni Grill and ate part of both of them.
3/08/06 Bradley’s grandmother visited, but he was very tired and only came downstairs for a few minutes.
3/09/06 This was a quiet day. Bradley slept a lot.
3/10/06 Brad went to Bradley’s room to wake him up and get him ready for the bone marrow test. Bradley was in bed, panting for breath. He could talk, but swayed when he stood up. He had a fever. We called Dr S and took him directly to the UMMS Emergency Room. After a long wait, a nurse saw him lying on a bench in the waiting room, lips and fingertips blue, and rushed us inside. They quickly determined that his blood oxygen level was very low. They weren’t able to bring it up using a mask, which Bradley had trouble keeping on because of coughing. He was given a sedative and put on a ventilator with the tube going down his throat. An X-Ray showed his right lung (the “good” lung) was full of fluid.
Brad asked the oncologist who saw B in the ER if this was going to kill him. The doc didn’t want to give a direct answer, but Brad persisted, asking if it was time to call out-of-town relatives to come see him. Then the doc replied that yes, those calls should be made as it was likely that B would die. I spent the next hour in the emergency room parking lot making calls, trying to answer people's questions as to what they should do, not wanting to hear "is it time?" but telling people that yes, it might be time.
There weren’t any beds available in the adult ICU, so he was admitted to the Pediatric ICU. The staff there was amazing - kind, thorough, extremely attentive to Bradley's every need and attuned to our needs as parents as well. They determined that B had a bacterial infection, but they couldn't pinpoint what kind. The head of the pediatric ICU interviewed us at length as to what he’d been exposed to recently to help them figure out what type of antibiotic would work best. In Texas he used public transportation and lived in an old rental unit (with a puppy in the unit next door), any one of which could have been sources of contact with infection-causing microorganisms. The range of infections that he could have been exposed to was too big.
At one point late at night, he woke up and struggled to pull the tube out of his throat. The entire available staff of the PICU gathered around to help monitor his vitals, administer meds (including a nicotine patch, once they realized he smoked) and do their best to calm his agitation. After that, the decision was made to move him to an adult floor as soon as possible, as the pediatrics staff wasn’t accustomed to dealing with patients with his strength and the dosages of the meds that he needed.
3/11-3/14/06 Surgical ICU In the middle of the night, he was moved to the Surgical ICU. PET/CT scans Bone marrow biopsy
3/14-3/21/06 Moved to the Medical ICU In both the Surgical and Medical ICU's, Brad tried to be at the hospital for every nursing shift change to make sure the new nurse knew that we wanted Bradley's pain alleviated and what the dosages and timeframes were. B was no longer verbally responsive, but became extremely agitated as each dose of med wore off. One nurse had notions of weaning him down, regardless of the fact that he wasn't expected to live more than another week, so he was coming conscious every 2-4 hours, coming up swinging and it would take 4 people to hold down his 6 ft 120 lb body until pain meds took effect. Brad and B's mother made sure that nurse was never assigned to him again.
3/16/06 Results of biopsy and scans showed that the cancer was in his marrow, and at the original site as well as his spine.
3/17/06 From ESARC post: "Yesterday morning we were called into a family conference at the Medical ICU with Bradley's team of doctors. The cancer has spread, which would have started during chemo and radiation. It is in his bone marrow and at the original site. In order to be eligible for bone marrow transplant he would have to have been responding to chemo. They will do their best to manage his pain. In the next couple of days they will remove the ventilator tube and see if he can breath on his own. If he cannot breath on his own or if his heart stops they will not rescuscitate."
3/21/06 Bradley slips away from this world.