Welcome to my Sabbatical

Thursday, May 14, 2009

2009 Team Sarcoma in Baltimore, MD

If it's May, it must be time to start spreading the word about this year's Team Sarcoma events.

What is a Team Sarcoma about? To quote the website:
"The Team Sarcoma Initiative is an internationally coordinated set of events to raise awareness of sarcoma and raise funds to support sarcoma research, clinical trials, and patient and family services. The annual effort consists of a "core" Team Sarcoma Bike Tour and local Team Sarcoma events that are held worldwide during the same week. The Team Sarcoma Initiative has become an International Sarcoma Awareness Week with over 8,000 people participating worldwide in 2008.

For information about the core team ride and other team events both in the US and abroad, look here:


I'll be attending the Johns Hopkins Kimmel Cancer Center's 2009 Team Sarcoma Bike Event
All Wheels Welcome!
Bicycles, Rollerblades, Scooters, Skateboards and Wheelchairs
Sunday July 29, 2009
Registration begins at 7:30 am
Event runs from 8:30 am - 12:00 pm
For more info and to pre-register:

Monday, February 23, 2009

The Work Goes On

In the past year, I have continued my volunteer work with the Liddy Shriver Sarcoma Initiative. Bruce and Beverly Shriver have been kind enough to allow me to contribute three articles for ESUN (ELECTRONIC SARCOMA UPDATE NEWSLETTER). The goal of all three articles is to help those whose lives have been impacted by a sarcoma diagnosis to better cope and support the patient (if not themselves). If you have any feedback on these articles, I'd love to hear it ~ Elizabeth

A Guide to the Sarcoma Universe for Those who Have Just Arrived
An ESUN Article
Elizabeth Goldstein-Rice and Mary Porcher Sorens
On the day of diagnosis, whether you are sitting on the examining table, holding the patient's hand, or answering a friend's phone call, sarcoma is a new and frightening experience. There is so much to accept and understand, and it can be difficult to get your bearings.
This article is designed to help you and those around you navigate the sarcoma universe. It provides important facts about sarcoma and its treatment, and it is meant to be a useful guide for sarcoma patients and those who advocate for them, including their parents, family and friends.


The Importance of Second Opinions for Sarcoma
An ESUN Article
Elizabeth Goldstein-Rice
Because sarcoma is a rare cancer, most physicians may only encounter a few instances of it in their lifetime, if any at all. Patients need to be diagnosed and treated by physicians and interdisciplinary teams that have experience with sarcomas. If you are diagnosed with sarcoma, we encourage you to obtain a second opinion about your initial diagnosis and your proposed treatment plan from a sarcoma center. Good physicians are not offended when patients seek a second opinion about a rare cancer; it is fairly standard procedure. Moreover, some insurance companies require a second opinion before they will reimburse costs for a proposed treatment plan.

The Importance of Treatment at a Specialty Center for Sarcomas
An ESUN Article
Elizabeth Goldstein-Rice
There are numerous and important reasons why someone who has been diagnosed with sarcoma should be treated at a center where there is an interdisciplinary medical team that has experience in treating this rare disease.

Wednesday, October 3, 2007

Bradley's 21st Birthday

Today was Bradley's 21st Birthday. We had a toast with him and his uncle Shawn. The hydrangea's his sister sent are beautiful.

~ Elizabeth

Wednesday, September 26, 2007

SCHIP and why it matters

From today's headlines:

The White House thinks funding insurance coverage for children is going to cost too much:

On Tuesday, the House voted 265-159 to expand the State Children's Health Insurance Program, or SCHIP, by $35 billion over five years.........President Bush proposes a smaller increase in SCHIP — $5 billion over five years.

But then asks for this:

WASHINGTON - Defense Secretary Robert Gates will ask Congress Wednesday to approve nearly $190 billion for the wars in Iraq and Afghanistan in 2008, increasing initial projections by more than a third.

This is important to those of us who advocate in the field of children's cancers as cure rates are much higher for children who are diagnosed early. Uninsured and under-insured children are not going to see a doctor for a painless lump. Odds are, they won't go to a doctor's office at all. They'll wait until it's a big, flaming, painful monster causing secondary symptoms, then go to an emergency room where it's likely to be misdiagnosed. Add some more time for it to grow and fester until someone finally authorizes tests (tests that are more expensive for the uninsured than the insured). The more a child's cancer spreads, the worse that child's prognosis will be.

Early diagnosis saves lives and money. I don't care if the insurance made available is federalized, privatized or socialized, let's just get it un-politicized! Why should poor people watch as their children routinely have worse outcomes than more fortunate children? It's time to take care of our own here at home.

~ Elizabeth

Chronology of Bradley's Treatment, Part 5

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.

Blogging B's Story

Just wanted to let people know that I'm going to be adding to the 4-part posts of Bradley's medical chronology to fill it out as more thoughts come to mind. I still participate in the ACOR Ewings Sarcoma list, where people ask questions and make comments that remind me that we did deal with this or that, and then I want to add it to the chrono. So, even though blog's are normally used as journals for ongoing events, I'm going to be using it as the primary location for B's story so others can get the latest version in the same place without having to read every entry. Dealing with a new dx is hard enough without having to play 'go fish' for every hint of how other families have coped. Now I'm off to update!
~ Elizabeth

Friday, September 7, 2007

Chronology of Bradley's Treatment, Part 4

8/30/05 Dr Sausville
The first four rounds of chemo were the “induction rounds”. The initial staging tests were run again to see how the cancer was responding to chemo.

9/01/05 CT Scan of chest, neck and abdomen

9/06/05 PET Scan, CT of lungs
Test results from first four rounds showed great improvement. Big sigh of relief, as any indications of active tumors at this point would be really bad news. The decision was made to proceed with local control, removing the primary site.

First visit to Dr Garofalo, the radiology oncologist. He recommended radiation after surgery. I asked if the radiation would be targeted and he said there was no need for that.

9/12/05 Appt with surgeon Dr Krasna was cancelled as he’s out of the country. This caused a 2 week delay.

Appointment with the surgeon Dr Krasna. The plan was to remove most of the rib that was the primary site and part of the two surrounding ribs along with muscle between the ribs in order to achieve wide margins. The latest PET didn’t show any tumor activity in that lung anymore, but he’d check it out and remove tissue as needed.

Dr Sausville
Surgery was almost a month away, so Dr S recommended we go ahead with round #5. Bradley had already had his lifetime max of Doxyrubicin and would start receiving Etoposide.

Chemo #5 IE

Pre-surgical tests
10/18/05 Pulmonary function test, echocardiogram
10/21/05 Chest X-Ray and appointment with Dr Sausville
10/24/05 MRI
10/25/05 Stress test

11/02/05 Surgery Hospitalized through 11/09/05 (7 days)
Bradley came through surgery with flying colors! The surgeon had to remove more of the 6th rib that was the primary site than originally planned, which meant he also had to take more of the ribs above and below that rib (ribs 5 and 7) to achieve wide margins. The good news is that he found virtually no evidence of tumor in the lung. He'd been concerned there would at least one significant spot in the lung, where there had been a fairly large tumor at diagnosis, or that they would find additional metastases from the bone that would require removal of some lung. There was none of that. He did find 3 small spots in chest wall and diaphragm, which he removed and put clips in, but there wasn't removal of a significant amount of muscle. If pathology found these spots to be active (they could be anything, not necessarily related to cancer), the clips would serve as markers for targeted radiation later. Labs would be done on the bone to ensure there’s no active tumor in the removed bones; results can take a few weeks to get back.

We did have some bumps on the non-surgical side. We arrived at the hospital VERY early, around 6 AM and didn't leave until after 8 PM that night. We'd been there for over 14 hours and Bradley still hadn't been moved to a post-op area where we could see him. The nurse said he might not be available for visits before morning, and said we might as well go home and get some rest. Unfortunately, Bradley did wake up during the night and was very upset that we weren't there. He said that the surgical staff was unresponsive and didn't listen to his complaints of pain, thus failing to notice that the pump that was supposed to be delivering on-demand pain meds wasn't working. My husband was livid. Bradley was 19 and they were treating him as an adult in terms of privacy and final say on medical decisions. We shouldn't have HAD to spend the night to make sure he was taken care of properly, esp after being advised to go home. Now we realize that once we left the Cancer institute side of the hospital, we were in a whole new world. The staff in the cancer clinic and infusion center were great people, attentive to detail and compassionate. On the other side of the "big city hospital" some staff could be apathetic and inconsiderate and it was more important that Bradley have a family member present to advocate for him.

11/11/05 Dr Sausville
We were still waiting for the results of biopsy on samples taken during surgery, due later this week. Dr S filled us in on some details. If the biopsy of tissue from chest wall was cancerous, radiation would likely occur before the end of chemo; otherwise, it could wait until the end. Since the left lung was found to be so healthy, there MIGHT not be the need for low level radiation of the whole lung after chemo as originally planned. They’d modify the chemo cocktail to reduce toxicity for any chemo given during radiation. Bradley wanted to go to San Antonio, where his girlfriend was, but agreed to stay in MD through radiation. We hoped to make sure he was on the home stretch as far as the remaining rounds of chemo before he left.