Welcome to my Sabbatical

2009 Team Sarcoma in Baltimore, MD

2009-05-14T18:27:00.002-05:00

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:

http://sarcomahelp.org/team_sarcoma.html

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:
http://www.hopkinskimmelcancercenter.org/index.cfm/cID/1684/mpage/item.cfm/itemID/1039

The Work Goes On

2009-02-23T16:08:00.002-05:00

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.
http://www.sarcomahelp.org/learning_center/articles/newly_diagnosed.html

The Importance of Second Opinions for Sarcoma
An ESUN Article
Elizabeth Goldstein-Rice
http://www.sarcomahelp.org/learning_center/articles/second_opinions.html
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
http://sarcomahelp.org/learning_center/articles/sarcoma_centers.html
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.

Bradley's 21st Birthday

2007-10-03T19:29:00.001-05:00

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

SCHIP and why it matters

2007-09-26T12:46:00.000-05:00

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

2007-09-26T11:20:00.000-05:00

11/22/05
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.

11/25/05
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

12/2/05
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.

Breaking the Rules of the Blog

2007-09-26T08:38:00.000-05:00

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

Chronology of Bradley's Treatment, Part 4

2007-09-07T13:15:00.001-05:00

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.

9/07/05
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.

9/30/05
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.

10/07/05
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.

10/10-10/14/05
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.

Chronology of Bradley's Treatment, Part 3

2007-09-07T13:13:00.000-05:00

6/17/05
After Bradley’s counts recovered from round one, we wanted to move him back to Maryland. I had a phone conversation with the local doctor in MD. He advised that: His practice can’t handle this case. This is a life-threatening level of chemo – on a scale of 1-10, this is a 9.99. No one in Columbia is going to offer this type of chemo since John Hopkins and University of MD are so close. He says he’ll call on Monday with names of docs that MIGHT be able to help. We were dejected that we had to wait over the weekend for the info. He didn’t call back on Monday and when I tried to reach him, was informed that all the doctors were in training and not available.

Bradley went to the onc for IV fluids. This regimen requires high levels of hydration, so Bradley sometimes goes in just for fluids and also has to drink a lot of water.

6/20/05
Bradley’s counts were still high, but could drop any day. The local onc recommended that we travel now, or wait until after next round of chemo.

This doctor wasn’t helpful in setting us up with a doctor in MD. Having been turned away by our own local onc, who never did return our calls with a referral to a bigger center, we sat in the lobby of the hospital with our insurance list of providers and made calls on our cell phones until the batteries died. We finally got an appt with a doctor at the University of Maryland Medical System (UMMS) for 7/6/05, even though his next chemo was scheduled to start on 7/5/05. It was stunning that doctors ditched us as far as helping us get connected with a Sarcoma expert in MD. I also didn’t realize that we could have identified the appropriate specialists on the John Hopkins website, then called them directly and asked for a consultation.

6/21/05
Bradley returned to MD with Eliz and Brad.

The Texas doctor armed us with prescription drugs to cover Bradley’s needs until he was under the care of a new doctor. RX’s were for nausea, pain, fungal infections, constipation, stomach protection, topical treatments for mouth sores, anti-inflammatory and antibiotics. Brad created a spreadsheet to keep track of which medications were for what, dosages, schedules and interactions.

6/22/05
Howard County Hospital
On the advice of the Texas onc, Brad called UMMS and our local hospital and arranged for Bradley to get IV fluids and a CBC to make sure he remained stable in the interim before seeing a new onc.

6/27/05
The local Maryland oncology group called to confirm the appt that we had assumed was cancelled when the doctor told us his practice wouldn’t take the case. We told them about the appt at UMMS. Within hours, we got a call back. The MD onc was alarmed that the appt at UMMS was too late for chemo #2. We replied “Yes, we know, but this is all we could get” and resisted the urge to point out that we wouldn’t be in this situation if he’d called us last week. He advised that UMMS would call us by the end of the day. They called with a new appointment, this one with Dr Sausville on 6/30/05.

6/30/05
Dr Edward Sausville, 1st Consultation
Associate Directory of Clinical Research, Greenebaum Cancer Center, University of Maryland Medical Center. He managed Bradley’s treatment, which was overseen by the UMMS tumor board, an interdisciplinary team that includes oncologists, surgeons and radiologists, among others.

7/05-7/08/05
Chemo #2 VDI
This round was the same as the first, except that he wasn’t given preventive antibiotics. We were told to check his temperature twice a day.

Medstar Info
With the assistance of the home health care providers at Medstar, Bradley was treated as outpatient. Bradley was adamant he did not want to be inpatient, so Brad pressed for the outpatient option. UMMS was able to work out the following program. 4 days a week he went to the infusion center and was there about 5 hours. The first day, Medstar came to the infusion center after his chemo was done and hooked up the Doxorubicin and first IV bag to his port. They provided a backpack that held the 2 pumps on one side and the 2 fluid bags on the other. The bag of Doxorubicin had all the fluid he needed for the cycle so we didn't have to touch it. The IV bag had to be changed every 24 hours. In the afternoon of the first day, Medstar delivered the additional IV bags; syringes of saline, heparin and mesna; medical waste disposal box and a slew of other stuff to the house. We usually got 2 phone calls in the 2nd or 3rd day, one from the Medstar pharmacy (the take-home fluids come from Medstar not the hospital) and one from the Medstar home support unit to make sure everything was okay. At the end of the round, a nurse came to our home to detach the lines from Bradley’s port and take away the supplies we no longer needed. To accommodate the continuous IV fluids during chemo, Bradley had to have 2 "Y's" attached to his port. Doing the outpatient option took a commitment to learning how to handle the meds and equipment. Brad arranged to work from home on chemo days, in order to monitor and be there for bag changes.

Our insurance company Aetna assigned us a nurse/case manager for us to call when we needed Medstar services and she gave them authorization numbers.

7/08/05
Bradley’s mom Linda and her husband Curtis arrived from Texas to assist with his care.

7/11/05 CBC
7/18/05 CBC

7/26-7/29/05
Chemo #3 VDI

8/04-8/08/05
Hospitalization #1 for mucositis.
Bradley woke up at 11 PM with a fever of 102.8. We were told to take him directly to the 9th floor of the Greenbaum Cancer Center (adult cancer patients). He received his first transfusion.

Bradley was always the youngest person in the infusion center and on his hospital floor. If he had been just a little younger, he would have been treated as a pediatric patient and so would have been on a pediatric floor. However, that would have removed his option to receive chemo as outpatient. He was extremely bored in the hospital, so we got him a portable DVD player and set up a routine for collecting movies, games and controllers and canned soups to take when we go to the hospital. The only hospital food he likes is the milkshakes.

8/12 CBC, chem panel

8/16-8/19/05
Chemo #4 VDI

8/21
This was the day we found out about the Immther clinical trial at MD Anderson in Houston, TX. It has shown great promise in producing a cure with lower risk of recurrence. Unfortunately, it requires that the patient have had NO chemo, so it was too late for Bradley to participate.
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/ID97-198

8/25-8/28/05
Hospitalization #2 for mucositis

Around this time, Bradley’s feelings about his illness began to change. He was less frightened and more angry as he watched the milemarkers he’d planned for his life pass by. Now that he’d had four rounds of chemo, it was getting old. He was tired of everyone paying attention to what he ate and the loss of privacy as regards his bodily functions. Fortunately, he had friends who stopped by frequently and we stopped paying as much attention as we normally would have to how much noise they made and how much food they ate. When we heard BOOM-BOOM-BOOM coming from upstairs, we knew where he was and that he was doing his thing! His girlfriend was still planning to head off to school in San Antonio, so she spent a lot of time at our house too.

Chronology of Bradley's Treatment, Part 2

2007-09-07T13:11:00.001-05:00

6/13-6/16/05
Chemo #1 Vincristine/Doxyrubicin/Ifosfamide (VDI)
B had his first round of chemo out-patient in the onc's office. The staff there was very friendly and made him feel special. He felt great after the first day of his first chemo. The tumor started to shrink during the first round and his pain decreased dramatically. By the end of the round, however, he was constipated, nauseous and irritable. B liked being outpatient as was able to rest in his own bed afterwards and hang out with his Texas friends in the evenings. This boy had friends everywhere he went, for as long as I'd known him, an absolutely remarkable quality. The doxyrubicin was administered slowly, with a small portable pump to keep the flow steady. B carried around this pump for the four days of treatment. It made a high-pitched squeaky noise with every pump, which he found extremely annoying at night.

During this first round, we read the pile of literature from the oncologist and, over the course of the week and the one after it, we experienced the Ewing’s treatment lifestyle for the first time:

Week 1
Chemo week. During this week, B would have chemo in sessions lasting 4-6 hours daily for 2-5 days depending on which cycle it was. Managing the immediate side effects caused by the chemo was very tricky and required someone to be home with him all the time.

Week 2
This is the dangerous week, in which the following counts can drop to zero. The impact of chemo on blood components:

WBC White blood cell count. When this is low, he is susceptible to infection. Our orders were to take him directly to the hospital if his fever hit 100.2. Plan on being admitted and staying a few days.

RBC Red blood cell count. Red blood cells deliver oxygen to the rest of the body. When these were low, he was extremely tired due to the lack of oxygen being delivered to his organs and limbs.

Platelets Responsible for clotting. When platelets were low, he had to be very careful of injuries that cause bleeding, including internal bleeding. He’s not supposed to even floss his teeth then. Legend on ACOR has it that low platelets can also be responsible for extreme crankiness.

Mucositis is often referred to as “mouth sores”. That description doesn't convey that the inflammation and lesions encompass the entire digestive tract from the mouth all the way to the anus. It’s very painful and accompanied by high fevers & increased risk of infection.

Week 3
The Happy Week. With any luck, counts have rebounded and side effects diminished. This was a good week to travel, eat out and have people over, although we’d been warned to keep him away from old people and babies as they’re prime carriers of bacteria.

The Drugs

Chemotherapy Agents
Vincristine http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Vincristine
Doxorubicin http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Doxorubicin
Ifosfamide http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Ifosfamide
Etoposide http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Etoposide
Cyclophosphamide http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Cyclophosphamide

Side Effect Management

Protect bladder
Mesna http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Mesna

Protect/heal stomach and esophagus
Protonix
Prilosec
Nexium

Protect heart
Dexrazoxane/Zinecard

Nausea - Take the nausea meds the night BEFORE chemo to stay ahead of it!
Zofran: He liked this one best.
Decadron: This one made Bradley sleepy and cranky
Penergan: Sleepy!
Kytril
Compazine

Anti-inflammatory
Naproxen sodium (RX-strength NSAID)

Pain management
Vicodin
Duragesic (fentanyl) patch
Morphine (MS-Contin)
Morphine sulphate
Percocet/Oxycodone APAP

Mouth Care
“Pink Magic”
Swish-and-swallow mouthwash for both cleaning and relief of mouth and throat pain. It’s a blend of Pink Liquid Benadryl, Liquid Maalox or Mylanta, Nystatin Liquid (RX only antifungal product) and Viscous Lidocaine 2% (RX only numbing product).

Peridex
Swish-and-spit to reduce gum swelling and kill bacteria.

To treat Infection
Levaquin

Antifungals
Diflucan/fluconazole
Nystatin
Use of an antifungal is important to prevent mouth fungi. A fungal infection can spread to the lungs. In a weakened immune state, this can be a big problem.

Constipation
Miralax, Benefiber, Colace
Enema’s not allowed due to risk of internal injury.
Ex-Lax not allowed as it causes food to pass before nutrients are absorbed.
Magnesium Citrate – Bradley said this worked best

Sleep
Ambien

To flush mediport
Heparin

Help skin heal during radiation
Aquaphor

Chronology of Bradley's Treatment, Part 1

2007-09-07T13:05:00.001-05:00

2005

5/27/05
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

Treatment:
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.

5/28/05
CT-guided, thin needle biopsy of soft tissue mass in left chest wall. Lidocaine for local anesthetic.

5/31/05
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

6/03-6/06/05
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.

6/7/05
MRI Cervical spine without contrast
MRI Thoracic spine without contrast
MRI Lumbosacral spine without contrast
MRI Pelvis without contrast

6/9/05
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.

6/10/05
Chest X-Ray
NM Bone Scan Whole Body. Big sigh of relief as it showed no marrow involvement and no distant mets.

Labs
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

Ms M Final Update

2007-09-07T09:58:00.000-05:00

The ACS paired me up with a single client, a 67-year old woman with recurrence of colorectal cancer. The cancer is kept in check by chemotherapy, but will not cure it. Initially, I thought driving for one person might not occupy the amount of time I’d hoped. My volunteer coordinator advised that she would let me know if anything else came up, but I’m now aware that she knew Ms M would take more time than I thought.

Working with Ms M, I learned her treatment plan for colorectal cancer and new initiatives in treating liver metastasis (which she had). Every Monday, she had chemo and oncology appointments. Other days, she often had appointments with her primary care physician, general surgeon and orthopedic surgeon as well as MRI and lab tests. She’d had a colostomy that needed constant attention as the chemo prevents it from healing. I sat in on most of her meetings with doctors, took notes when needed and asked questions to make sure the doctor elaborated on important points.

It was interesting to note the differences between Bradley’s treatments and hers. It gave me a new perspective as to what cancer treatment is usually like. Bradley’s treatments were extremely harsh and ran on a three-week cycle which formed the basis of what I call the Ewing’s Lifestyle.

Week 1
Chemo week. During this week, B would have chemo in sessions lasting 4-6 hours daily for 2-5 days depending on which cycle it was. Managing the immediate side effects caused by the chemo was very tricky and required someone to be home with him all the time.

Week 2
This is a dangerous week, in which the following counts can drop to zero. The impact of chemo on blood components:

WBC White blood cell count. When this is low, he is susceptible to infection. Our orders were to take him directly to the hospital if his fever hit 100.2 and plan on staying a few days.
.
RBC Red blood cell count. Red blood cells deliver oxygen to the rest of the body. When these were low, he was extremely tired due to the lack of oxygen being delivered to his organs and limbs.

Platelets Responsible for clotting. When platelets were low, he had to be very careful of injuries that cause bleeding, including internal bleeding. He’s not supposed to even floss his teeth then.

Mucositis can also become a problem. It’s sometimes referred to simply as “mouth sores”, but the inflammation and lesions encompass the entire digestive tract all the way from the mouth to the anus. It’s very painful and accompanied by high fevers as well as increased risk of infection.

Week 3
The Happy Week. With any luck, counts have rebounded and side effects diminished. This was a good week to travel, eat out and have people over, although we’d been warned to keep him away from old people and babies as they’re prime carriers of bacteria.

Ms M’s chemo didn’t have the same drastic effects on her. She did have chemo every week, which made extended travel impossible, but otherwise, she would only feel tired and sometimes nauseous for a day or two and wasn’t restricted due to issues with blood counts. On the other hand, her surgery was more debilitating in the long term than Bradley’s and she had problems managing on-going issues with her colostomy.

It was frustrating to watch as she experienced delays due to miscommunications between her surgeon, oncologist and herself. Through the course of Bradley’s treatment at the University of Maryland Medical Center, his care was managed by an interdisciplinary team and overseen by a tumor board. We quickly grew accustomed to a routine in which we would get phone calls telling us what to do, who to see and when to do it, and sometimes appointments were even grouped for us to limit the number of days we had to go to the hospital. Ms M was treated through a local cancer center that doesn’t normally coordinate patient care or sharing of medical records unless there was “a situation” and she was too confused or sick to manage it herself. It was left to her to schedule all her own appointments, make sure everything was done in the right order and keep her several doctors informed of the latest developments.

One necessary procedure was delayed by 3-4 weeks due in part to insurance red tape, but mainly because Ms M was not feeling well and didn’t realize that the doctors were waiting for her to make phone calls, whereas she had expected them to call her after test results were all in. She has no self-sufficient local family and the terms of her federal aid do not allow for family members to move in as caregivers, even temporarily. She had to quit working after her surgery because she was unable to maintain a regular work schedule and was unhappy about her inability to work.

My role as driver included limited direct patient advocacy. I was mainly expected to keep my ears open and update the volunteer coordinator. She would then follow up with Ms M to offer additional ACS services as needed.

As my sabbatical ended, I’m sorry to say that things weren’t looking so good for Ms M. She’s scheduled to have a new procedure at the Univ of MD Medical Center in which chemo will be delivered via a tube threaded directly to the tumors in her liver. The expectation is that this will eliminate those tumors. Then, she would be able to stop receiving the weekly chemo which would allow her surgical wounds to heal. On the surface it all sounds good; however, at her last oncology visit, it was decided to forego chemo for two weeks because of new side effects indicating that her body isn’t tolerating the chemo so well anymore. Every time chemo is skipped, there’s an opportunity for the cancer to spread. So, the question is whether she’ll be sufficiently healthy to have the procedure. I may never know the answer to that question. Or, I may follow up with her and visit her in the hospital! I’ll cross that bridge when we come to it. It was an honor to serve her while I could.

Thanks for reading my blog!
~ Elizabeth

Thank You's

2007-08-24T09:25:00.001-05:00

Here are some of the acknowledgements that I've received for volunteer activities during this sabbatical.

Another RMH Craft Hour

2007-08-23T07:32:00.000-05:00

This craft hour was the most successful yet. This time, I showed each child these samples of the items they could make so they could pick which one to work on first. Then my niece Shawn or I gave them a divided paper plate with the foamie pieces for that item. They could use glue, which we'd pour into one side of the plate so they could dip the foam into it. They also tried, and LOVED, the zots - dots of ultra-adhesive glue that could be shoved into small places (to join wings to plane) or used to attache foamies to one another. Clean and no waiting for things to dry! Zots are my new favorite household repair tool, replacing duct tape so you know it has to be good!

Thanks for reading my blog!
~ Elizabeth

Seven More Project Linus Blankets

2007-08-20T16:10:00.000-05:00

In addition to on-going working on the LSSI Team Sarcoma Starter Kit, I've just completed seven more Project Linus blankets! This will be the last of it for Project Linus during my sabbatical time. This week and next my focus will move on to writing Bradley's medical chronology. I started it at the beginning of the sabbatical but my emotions were still too raw and it was too difficult to even flip through the pages of my old daytimer. This time, I'll combine writing with putting together a layout of all of his school pictures. You'll be seeing those!

Thanks for reading my blog!

~ Elizabeth

The Team Sarcoma Starter Kit

2007-08-15T10:28:00.000-05:00

When I first started planning my work for the Liddy Shriver Sarcoma Iniative, I envisioned using my project management skills to create a formalized project plan for a defined, repeatable process for conducting a team sarcoma. The week in Vermont taught me that the PM approach was doomed before it began. If the folks in Vermont represented our target audience, which they did, it was clear they would run screaming from anything that looked like more work for them, and nothing looks more like work than a Work Breakdown Structure. What the heck I was thinking?

What I learned in VT was of the "can't put into words" variety, but it resulted in a total restructuring of the Plan into a user-friendly "Team Sarcoma Starter Kit". The new name and organization of the material is designed to be easy to use by a busy person who isn't necessarily interested in spending a lot of time on their team, but wants to make what time they do spend as profitable as possible. It facilitates delegating of tasks among team members as one person can offer to take on creating flyers based on the templates provided and another can focus on the media contacts. If the team is only one person, that person can pick and choose which activities to do and get off to a running start with them. There are placeholders for the Shrivers to add information that fall in their area of expertise (ex "How to Approach Cancer Centers.doc"). They can also ask current Team Sarcoma leaders of different types of events to contribute to the kit and insert that in a logically arranged way. The goal is to make it easier for the Shrivers to recruit new team leaders and reduce the amount of time managing the teams takes, as they expect to have more and larger teams in the future. So, here's the high-level outline of Version One of the disk that I sent to Bruce last week. I've volunteered to coordinate the addition of new material in order to have the Kit ready to give out when Team Sarcoma 2008 kicks off, around March. Double-click to enlarge the image.

Thanks for reading my blog!

~ Elizabeth

Thoughts on Team Sarcoma 2007 Vermont

2007-08-15T09:53:00.000-05:00

It’s hard to believe it’s been a month since our trip to Vermont and I haven’t been able to find the words to describe the experience. It’s one thing to read a promo that says, “participants will include patients, caregivers, families and medical professionals” and another thing to spend a week with a group like this:

A young Polish man whose Ewing’s Sarcoma primary site was almost identical to Bradley’s, without the lung mets, in remission and married to his chemo nurse.

Children currently in treatment or in remission from rhabdomyosarcoma, with their entire families, two of which traveled from Spain and Mexico.

Children with parents or siblings with sarcoma.

The first day, the children hid suspiciously behind their parents, eyeballing each other from afar. The next day they tested each other and started tentatively playing together. By the third day they were asking to spend the night together and sharing dining tables.

Many with lives in the balance, searching for answers and eager to connect in a meaningful way with everyone and anyone who might know any new thing, any gem that can help them and which they can pass along.

Those in mourning for recent deaths.

Those whose losses are further in the past and who dedicate themselves year after year to honor them in events like this one.

A woman with chondrosarcoma who was told to go home and prepare to die by a major cancer center, but who found a surgeon to perform risky surgery and not only was she biking, she was doing cartwheels.

Families in which more than one person has cancer or sarcoma, biking together.

People currently taking Gleevac for GIST (gastrointestinal stomach tumor). Gleevac is a fairly new drug that doesn’t cure, but keeps the sarcoma from growing - at least until the patient builds up a tolerance, which takes a couple of years. It’s important because it doesn’t have all the nasty side effects of most sarcoma drugs. They all had their hair, were of normal weight and athletically fit. Once I started putting the names, faces and stories together, I looked at these guys and asked “Wait a minute, are you telling me they’re on chemo NOW?” Yep, pills no less. Bradley’s treatment, the standard Ewing’s protocol, was positively barbaric, with no end of side effects. Gleevac makes it possible to live a largely normal life. From the patient’s standpoint, even if a drug doesn’t produce a cure, if it gets them the same state as the horrid stuff, it’s well worth the dollars and cents to develop it. Unfortunately it doesn’t work for Ewing’s.

When we needed a break from biking, we could hitch a ride in one of the sag wagons, joining one of three moderators of ACOR’s sarcoma support groups, unable to ride themselves but on the road with us, to be with their people. They'd known each other for years on-line and by phone, but had never met before.

There was the doctor, a survivor of childhood osteosarcoma himself, who came to speak with us one night about the current state of sarcoma research. He faced a pretty tough crowd, unhappy about roadblocks being put in the way of new drugs and the sad state of communication between diagnosing physicians/sarcoma centers/patients/patient advocates/surgeons/radiologists/etc. It’s sad when the patient knows more than the doctor and has to jump through hoops to get the info flowing, let alone action. His talk was actually pretty depressing. Seems like all the potentially good stuff is still years away and that’s assuming the money keeps coming in to support it.

Counting day-trippers, there were a total of 62 people participating during the course of the week, some for a few days, others only for hours. It was so much to take in. Since most days were spent riding, it was over coffee at breakfast, during rest and lunch breaks on the beautiful shores of Lake Champlain and Lake Dunmore and in the evenings back at the lodges that we picked up bits and pieces of people’s stories. Really, it took all week before I was sure I knew who everyone was and at least something of why they were there. This is one reason I made plans to meet with three of the people I had wanted to meet most (Truus, Dawn and Norma who wasn’t in VT) at Norma’s house in Virginia the next week. That’ll be in another post, as it stands on it’s own as another…..

Incredible, absolutely extraordinary experience.

My Top 10 Pictures from Vermont/NY
http://egr2058.phanfare.com/album/380248#imageID=23921120

ACOR’s website
http://www.acor.org/index.html

Vermont and The Walk - A Most Brief Update

2007-07-23T19:49:00.000-05:00

Team Sarcoma 2007 in Vermont was an amazing experience! We returned late Saturday afternoon to piles of mail (paper and electronic), voice messages and newspapers ..... then were up and at 'em early Sunday for our own Walk Around the Park. Today I was up early to drive Ms M to chemo, climbing over half-emptied suitcases and bags of leftover Walk supplies to reach the front door. Home again by 2:00 pm, I cleared a new path to the bed, being as nothing had actually been put away, just jumbled through to reach what we need, and SLEPT!!

We had a total of 50 people at the Walk Around the Park between 8:30 and 2:00. Here's the core team that was still there at the end.

Standing, left to right: My daughter Elena; Bill Shoemaker, with his wife Butch looking over his shoulder; Minda Vanleeuwen, with son Gage standing in front of her; LeRoy and Anna Stewart, nieces Shawan and Shawn Rice, and Chrystie Quirion, our party planner extraordinaire.

Seated in front: Brad, me with grandson Noah, Kelly (Dominique's mom) and Dominique (Bradley's girlfriend)

And this one is from Vermont: Beverly Shriver, Brad, Bruce Shriver, me.

Thanks for reading my blog!

~ Elizabeth

Shhh, Don't Tell.....

2007-07-13T11:13:00.000-05:00

At the completion of this year's Team Sarcoma Events, after everyone's had a chance to recover and we get feedback from other local teams, I'm going to give to Bruce and Beverly Shriver, the founders of the Liddy Shriver Sarcoma Initiative, an LSSI Team Sarcoma Starter Kit. The contents will include:

Walk Event Shopping List
Walk Event To-Do List
Sample Flyers
Sample Forms (sponsorship, registration, sponsor sign-up)
Sample letters to donors and media
Sample web and blog pages
Pictures, handy graphics and logos
Silent Auction Bid Sheets
Press Releases
Media Approach Suggestions
Information from the LSSI web-site formatted for printing, including
- Sarcoma information sheets
- Bracelet and Logo information sheets
Spreadsheets formatted for tracking
- Registration and T-shirts
- Donations and Thank-You’s
- Expenses

To this, I’ll add information and documents received from other teams. Ideally, the finished version #1 kit will provide helpful materials for several different types of events. I'll tell them about it when we meet them tomorrow, keeping it secret until then! We aren't bringing any e-mail electronics with us on the bike tour, so this will be my last post until after the Walk on 7/22.

Thanks for reading my blog! ~ Elizabeth

Food and Flannel

2007-07-10T14:53:00.000-05:00

This week we gathered snacks and beverages for the day of the walk. Here's some of what we'll have. In the morning, there'll be coffee and donuts courtesy of Dunkin Donuts! Nearby one of the stores I went to, there was a fabric store I'd never been to, so I HAD to go in .....

And it paid off. They had a great sale on snuggle flannel, $2-3/yd, so I picked these up for more Project Linus blankets. Next fleece sale I find, I'll be back in business.

Thanks for reading my blog!

~ Elizabeth

www.becgoteam.com

All Signs, Big and Small

2007-07-06T20:11:00.000-05:00

In a rare serious moment, grandson Noah models our collection of smaller signs. He helped by jumping on the completed signs a few times - a budding quality assurance officer? My favorite is the yard sign, front right. Our sign uses an "OPEN HOUSE" yard sign as its frame. I found the ones that come with the metal frame in a hardware store, cheap. The left and right sides of our signs are printed on 8 1/2 x 11 heavy card stock, sealed into self-laminating pouches. There's posterboard on the back, covering up the other side of the sign. The whole sandwich is taped together/edged with a nice craft tape. It comes out to a pretty sturdy structure that can be re-used. Adhesive arrows will be added to these signs as they're placed around the park. Sticker paper is now my favorite office supply. Print, cut, peel, stick, done. The other signs are made using leftovers from the Ronald McDonald House donation boxes and assorted home projects. I KNEW the rest of that blue duct tape would come in handy sometime!

Below is our main event sign for the front and back of the gazebo. The original plan was to use hanging banners, attached either to the fronts of the tables in the gazebo or to to the gazebo railings. After looking at a few banner papers, I reconsidered and created it as a 2-piece sign. The ingredients are 20 x 30 foam board, blue and purple duct tape and logos printed onto sticker paper. It won't flap in the wind and should stand up to light-to-moderate rainfall.

So there are our signs! Thanks for reading my blog!
~ Elizabeth
http://www.becgoteam.com/!

TEAM SARCOMA/Bradley Baker Park Setup

2007-07-05T09:46:00.000-05:00

Since Brad and I going to be on the international ride in Vermont the week before the Walk Around the Park in Frederick, we need to have the setup tasks pretty well defined before we leave. The Walk Experience will be a lot more fun if we have everything we need and people know how they can help - no one wants to think too hard at 8:00 AM! The tables shown above will be placed according to where the shade is and will likely move during the day to keep us as cool as possible. Sign production is currently in progress.

THINGS PEOPLE CAN DO
Pick up bathroom key the day before
Bring cameras
Set up tables
Put up banners and signs
Keep food table stocked and straightened
Run for ice
Watch Silent Auction Table
Register participants
Man the water tables and assist people with directions
Get change for the cash box
Take pictures

SETUP IN THE GAZEBO
Name Tags
Bracelets
About the Bracelet table sign
T-shirts
About the Logo table sign
Registration Forms
Sponsor Forms
Sarcoma Fact Sheets
Cash Box and Bag
PAD to record donor information for cash transactions
Balloon kits
Pens to write on balloons
Pens and pencils

SIGNS AND TABLES
Signs to put in other park locations pointing to the event
Sign that announces a gathering time
Signs for water station tables
Signs to put along the route
6 long table(s)
5 card tables
Min 10 folding and camp chairs
Tablecloths
Weights to hold down tablecloths

BANNERS (approx 5' x 24-30" would be ideal for these)
2 "TEAM SARCOMA 2007"
"SILENT AUCTION"
2 "SNACKS"
"FINISH LINE"

Tape to put up banners and signs

SNACK TABLES
Bottled water
Ice
Coolers
Sodas
Snacks
Donated food
Napkins
Cups
Trash bags

SILET AUCTION TABLE
Silent Auction bid sheets
Silent Auction items
-- Make baskets of some donated items. Dollar stores often carry baskets, tinted cellophane and, ribbon. Themes: movies, skin care, hand-made jewelry, local adventure or swim parks, Starbucks, candles, potpourri--
-Gift Certificates
Place a bid sheet and pen with each item

RAFFLE
Raffle Items
Raffle tickets
Raffle ticket box
Jar of counted marbles for a "how many" game

Thanks for reading my blog!
~ Elizabeth
www.becgoteam.com!

Delivery to Ronald McDonald House

2007-07-03T16:24:00.000-05:00

Today I delivered the donations from the Ronald McDonald House Wish List Donation Drive to the RMH in Baltimore. This is me with Sharook, an old friend from my craft night last month. My car was packed to the gills and it took a 4-person fireman's brigade to get it all into the building. To those who donated sugar and sweeteners - when the first staff person looked into the car and saw the boxes, she ran in to tell someone else to take it off the shopping list (they had just run out)! It was fun to be there with such good timing. The house manager was very happy to see how many of the basics were included. "This is great. These are things we use all the time" she said. My husband and I are really fortunate to work for BNA, a company with so many concerned and caring people.

I signed up for another craft night in August while I was there - this time we'll make pillows and I'll make sure to include materials that can be used by kids who only have the use of one hand or who aren't able to use the tables effectively from their wheelchairs. Most of the "handy" kits I brought last month required at least some delicate peeling off of thin paper backings which got frustrating for everyone. Next time we'll be playing with Elmers and never mind the mess!

Thanks for reading my blog!

~ Elizabeth

www.becgoteam.com

Why is the Walk from 8:30-2:00?

2007-06-30T13:09:00.001-05:00

You might wonder why the time for the Walk Around the Park is from 8:30-2:00. Isn't that a long time to be hanging out? Well, we wanted to accomodate some different types of people:

The early birds who want to walk in the cool of the morning, then help out at the gazebo or man the water tables (maybe take a side trip for shopping on nearby historic Market Street)
Those who don't want to be seen, and who you really don't want to see, at 8:30 in the morning on a Saturday. Getting up early on the weekends is not on the list of things they do. They'll get there after they've had their coffee, re-charged their cell phones, checked their MySpace, walked the dog, given the baby an early nap, made 5 phone calls ... they'll get there when they get there and we'll be VERY Happy to see them then!
Those coming from a distance who plan to stick around Frederick for the concert in the evening. The gazebo is right next to the bandshell, so we're right in the path of people coming early for that and the carillon recitals.

See you at the walk!

~ Elizabeth

BNA Turns Out for the RMH Wish List Drive!

2007-06-28T14:31:00.000-05:00

My living room is full! I've made two pickups from the Ronald McDonald House Wish List Donation boxes that I placed in 4 locations at BNA - my husband and my most generous employer - and the response has been overwhelming. To our co-workers who read this - THANK YOU! Here's what was donated so far, with one more pickup to go. All I can say is WOW!

Paper Goods!

Bags!
Kitchen and Cleaning!

Food and Drink!

Toys and Craft Supplies!

Stuffed Animals!

Clothes, Books and Movies!

Putting together the wish list drive has been a unique experience. It's going to be so much fun bringing this all to the RMH next week.

Thanks for reading my blog!

~Elizabeth

http://www.becgoteam.com/!

Silent Auction Donations

2007-06-27T11:21:00.001-05:00

Here are the gift certificates that have been donated to the silent auction so far with more to come.

Fine French dining!

Accupuncture for you and your friends!

Get evaluated and treated!

Reiki anyone?

To donate an item or service for the silent auction, contact me at egr2058@yahoo.com.

Thanks for reading my blog!

~ Elizabeth

www.becgoteam.com!

Updated Walk in the Park Information

2007-06-20T11:26:00.000-05:00

Double-click the image to enlarge it. I'm pleased to welcome to the team acccupuncturists Janice Campbell and Tom Ingegno, who will offer free ear treatments to those who cross the finish line!

Thanks for reading my blog!
~ Elizabeth
www.becgoteam.com!

My First 6 Project Linus Blankets

2007-06-20T10:04:00.001-05:00

Here they are! 2 were made with fleece front and back and 4 were made with fleece on one side and cotton flannel on the other, 2 yards of each for a twin/teen size blanket. Since the fleece is wider than flannel, for 2 of them, I let the extra flannel wrap around and create a border along the flannel side. Most of the fabrics were on sale for $5-8 per yard and I could have done better if I weren't such a sucker for cute combinations (but not toooo cute, I had to remind myself, we want it ON the 15-year olds' beds, not UNDER them!) The 2 sides of the blankets are attached one of three ways 1) tied with embroidery thread - when fleece is on both sides, this is easiest. 2) Small patches of zig-zag stitching spaced about 10" apart 3) Machine-quilted, with simple boxes inside one another. Some of the pockets are doubled, so that there are 2 pouches inside the pockets.

Paws on Red

Paws on Blue

Now You See Them, Now You Don't (both sides fleece)

Dragons and the Sea (both sides fleece)

Little Lizards with fleece wrapped to form border.

Froggies with fleece wrapped to form border.

Send in your Luminary Bag for Team Sarcoma Luminary Service

2007-06-15T16:29:00.000-05:00

Reposted from the ACOR Ewings Sarcoma Mailing List

As the sun sets on the participants in the 5th Team Sarcoma on Thursday evening July 19th, they will hold a luminary on the shore of North Hero Island in Lake Champlain . The luminary service will be held to pay tribute to those lost to sarcoma and to honor those still fighting and the caregivers, doctors, and nurses who helped them along the way. Candles will be placed in bags bearing their names. The light shining from these bags provides the hope and inspiration to all of us promoting awareness to sarcoma. We will carry this light in our hearts until we meet again.

To have a luminary bag become part of this ceremony, you can:

Make your own bag and send it to us. Purchase a #6 white bag from a craft store (e.g., A. C. Moore), decorate it and send it to me at address shown below. The bag should be no larger than 6”(wide) by 3 5/8” (deep) by 11” (high). We encourage you to use bright colors and include a picture if you would like.
Make a design on a piece of while paper that we can attach to a bag for you. The size should be no larger that 5 ½” by 8 ½”. Again, we encourage you to use bright colors and include a picture if you would like.

To pay for the candles and to make a donation for sarcoma research, we suggest a minimum donation of $5 for each bag. Make checks payable to “FJC” and the memo line must contain “Liddy Shriver Sarcoma Initiative/Luminary”.

The bags or information must be in my hands or mailed to me by July 6th.

MiMi Olsson
3 Amber Lane
Attleboro, MA 02703

Meet the Beast

2007-06-13T20:52:00.000-05:00

Meet the beast. This is the machine that I learned to sew on as a child and which my mother recently handed down to me. I did not take the machine for all the warm fuzzy memories it embodies. To the contrary, I remember only long tormented hours spent threading, breaking threads and re-threading this monster. My mother insisted I do this myself. Every Time. The top threading was a complete mystery, the path markings having worn away long before my time. My mother's instructions were delivered with New York City abruptness that I found terribly intimidating. And I heard them every time I broke a top thread, gummed up the bobbin or stalled the machine and turning the wheel didn't help. Let's say, every 5 minutes. No, I never got any better at it. After a couple of hours, I would manage to hide away and surreptitiously hand-sew the rest of the job. ANYWAY, I took the thing because I like the case that it folds into. Good wood, perfect height for dumping out the contents of one's pockets and sorting the mail.

Here is the machine I'll be using for Project Linus blankets. There are nice people at the store where I bought it who are happy - or at least do a good job of pretending to be happy - to show me tips and tricks for blanket sewing and how to recover from mistakes without tearing out 3 yards of thread in the process. It comes with a cover and stores easily under its ancestor, The Beast.

And here are some of the fabrics I'm using. I'm not doing the no-sew fleece thing, I'm actually sewing the edges myself. I like the patterns available on the bolts more than I do the prepared no-sew kits, and by the time you've cut the fabric to size it's easier to sew on the NEW machine than it is to do all the cutting the no-sew requires. The teen blankets are about 45" x 72" which is bigger than most of the no-sew kits also.

Thanks for reading my blog!

~ Elizabeth

http://www.becgoteam.com/!

What's Up With ClustrMaps?

2007-06-07T09:40:00.000-05:00

Warning! Warning! Those of you whose eyes slam shut at the hint of computer talk or statistics feel free to skip this post!

In the past year, I've noticed that the ClustrMap seemed to be taking the place of the good ole hit counter on many homemade websites. So, I added the ClustrMap to both www.becgoteam.com and this blog. ClustrMap is an easy, free tool that let's you "see at a glance where your site's visitors are located" (visits are different than hits - I won't bore you with the details). Clustrmap tells me that becgoteam.com has received a total 127 visits, all from the US. The low number, and the cluster dot patterns, didn't make sense based on feedback I've received. I started wondering....what's up with these web stats?

Soooo, my next stop was my handy-dandy Verizon web hosting tools to see how many visits it recorded: 532! 532 vs 127. That can't be right!

Soooo, my next visit was back to ClustrMaps FAQ page to see if their clustering methodology could cause 405 visits to go unreported and found this:

Map updates seem 'stalled' or 'stuck' since early June 2007. Why?
During late May / early June 2007, we have been processing an exceptionally large number of map updates and re-clusterings and additionally we are commissioning new servers and upgrading some systems software, which will greatly alleviate the bottleneck. So, if it feels to you like 'a problem I have had before', please be assured that the new servers and software upgrades are designed to solve the earlier problems, but unfortunately involve a temporary delay in the updating cycle! We expect all this to be resolved during the first two weeks of June. All 'old hits' that are accumulated during this delay will still be counted correctly and added to your eventual total.

Ahhh, so, we shall see what happens to our number of visits as June goes by.

Delving further into the Verizon web stats - for which there are a zillion ways to view and analyze more data than you can shake a stick at - the Hourly Statistics reveal the shocking truth - most people visit the website before work, during lunch and after work! Wow! With this knowledge, I see that we have yet to attract the Midnight to 6 AM crowd. How to do that and stay remotely on track, I wonder? My current outreach to that population consists of a myspace page http://www.myspace.com/egr2058. It doesn't have much on it that you can't find here, but there is a lovely picture of my garden.

A final note....according to ClustrMap, this blog has received 462 visits, originating from all over the world. Knowing how many times I myself have clicked the "Next Blog" button, I am not letting this go to my head. Really. Hmmm, wonder what it takes to get noticed by The Huffington Post? Off to my daydreams...ladeedadeeda!

Thanks for reading my Blog!
~ Elizabeth
www.becgoteam.com!

58 Events, 13 Countries for Team Sarcoma 2007

2007-06-07T07:53:00.000-05:00

2007 Team Sarcoma Initiative Events

There are currently 58 teams in 13 different countries planning events as part of the 2007 Team Sarcoma Initiative. We encourage you to participate in one or more of them that are close to you. http://tinyurl.com/ytozqg

~ Elizabeth
www.becgoteam.com!

Kudos to Volunteers at RMH!

2007-06-05T11:22:00.000-05:00

An e-mail recently sent to the volunteers at the Baltimore Ronald McDonald House. We're doing good! ~ Elizabeth

Hello,
I wanted to take the time to thank all of you; once again, for the amazing work you do for this House. I thought I would share this story with you so you can see the impact you have here with us. Recently two of our families left to go to other Ronald McDonald Houses in other cities. Neither of the families knew each other, yet both wrote an extensive letter to the House. Both of the letters praised the volunteer program, and how much easier you made it on them while they were staying here. These families are at other facilities that they obviously do not feel the same about. They called us the nicest and most caring place they have ever been, and if that is what we are known for, then we are all doing what we set out to do!

With the weather being nice the groups always have the option to cook on our grill, so just let me know! The kitchens are completely done as most of you know. We will be rotating months between kitchens in order to ensure thatthey get an equal amount of use. I am also working on an E-newsletter thatwill go out to the volunteers monthly, so stay tuned. The families are still raving about all of the dinners, breakfasts, lunches, and activities that take place here! Thank you all for all that you do! If any of you need anything please let me know.

Joshua Harden
Manager of Volunteer Services/Community Relations
410.528.1010 x106
joshua@rmhbaltimore.com

The Project Linus Easy Quilt Blanket Pattern

2007-06-04T18:11:00.001-05:00

Here is one of the recommended patterns for Project Linus blankets. I'm planning to make blankets in the teen size, 45" x 72" which the local coordinator says are in short supply, so I'll need to do more top-stitching than what is shown, but it still looks easy enough.

~ Elizabeth
www.becgoteam.com!

Project Linus

2007-06-04T17:25:00.001-05:00

Having found a little extra time due to scheduling issues, I visited http://www.volunteerhoward.org/, the website of the Volunteer Center for Howard County, MD to see what looked interesting. I scanned the listings for activities that could fit into a couple of hours at a time and that would in some way benefit cancer patients.

I found Project Linus:

Project Linus is a 100% volunteer non-profit organization with a two-fold mission:

First, it is our mission to provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer "blanketeers."
Second, it is our mission to provide a rewarding and fun service opportunity for interested individuals and groups in local communities, for the benefit of children.

I contacted the reps for the local chapter of Project Linus who responded with a description of their work:

Anytime there is a child in trauma we try to distribute a blanket. Below are some of the places to which we have delivered:
* Howard County Pediatric Emergency and NICU
* Johns Hopkins Pediatric Cardiology and Kidney Units
* Baltimore Abuse Crisis Center
* Kennedy Kreiger
* St. Agnes Hospital
* Grassroots
* Sarah’s House
* House of Ruth

Project Linus also delivers to hospitals that serve pediatric cancer patients. So I will be making blankets!

To find a Project Linus near you, visit http://www.projectlinus.org/chapter.shtml

Thanks for reading my blog!
~ Elizabeth
http://www.becgoteam.com/!

Other Events in Baker Park on July 22

2007-05-31T09:37:00.000-05:00

There are a couple of interesting things going on at Baker Park, in addition to our Walk, on July 22. The following is from the Frederick County calendar of events.

** Weekly Carillon Recital
Recitals on the Joseph dill Baker Carillon in Baker Park, an instrument of 49 bells in a 70 foot tower of Baltimore Granite. 12-12:30 pm. Guest carillonneurs from all over the world play 6-6:45 pm.

** Summer Concert Series
Outdoor concerts feature local, regional, national and international performers. Baker Park bandshell 7-9 pm. www.CelebrateFrederick.com

I love the bells!
~ Elizabeth
www.becgoteam.com!

The Team Sarcoma 2007 T-Shirt

2007-05-30T16:54:00.000-05:00

The Front

The Back

Register Now and Receive a T-Shirt and Bracelet!

2007-05-29T10:25:00.000-05:00

Hi! I wanted to make sure that everyone who wants to join us for the Walk Around the Park in Frederick on 7/22 has the opportunity to get the T-shirt and bracelet! If you can't come, but want a T-shirt anyway, we can do that! We have to provide quantities and sizes in the next couple of weeks. Please let me know your T-shirt size now and we'll deal with the registration form (below) when you arrive or you can mail it in. Please pass this along to others who would be interested. I'll be posting a picture of the T-shirt in the next few days. Thanks ~ Elizabeth

e-mail me with your T-shirt size egr2058@yahoo.com
www.becgoteam.com!
http://egr2058.blogspot.com

Flyer for BNA - 2 kids lost in 2 years

2007-05-27T08:44:00.000-05:00

After Bradley died, we found out that the son of a co-worker at BNA (the company that kindly accepted my application for a sabbatical) also had Ewings Sarcoma. Maramtaye Seck had achieved remission, but was dealing with relapse when we found out. It's VERY odd that one company should have two families afflicted with this beast, given that there are only about 200 new cases in the US each year. It would have been just wrong for the flyers I posted at BNA to be all about our boy only. Many thanks to his mother, Robin, to provide this picture and information for this flyer, which I put up on bulletin boards at work.
~ Elizabeth

Black Wednesday at the FDA

2007-05-26T20:26:00.000-05:00

Just makes ya want to spit. ~ Elizabeth

From the Wall Street Journal Online.
BLACK WEDNESDAY AT THE FDA.
By MarkThornton, M.D., Ph.D.Dr.

Mark Thornton is the founder of SarcomaFoundation of America (SFA)http://www.curesarcoma.org

The article:
http://www.investorvillage.com/smbd.asp?mb=971&pt=msg&mn=112292

First paragraph
"May 9, 2007, should be cited in the annals of cancer immunotherapy as Black Wednesday. Within an eight-hour period that day, the FDA succeeded in killing not one but two safe, promising therapies designed and developed to act by stimulating a patient's immune system against cancer. The FDA's hubris will affect the lives and possibly the life spans of cancer patients from nearly every demographic, from elderly men with prostate cancer to young children with the rarest of bone cancers."

For more information on the drugs in question:
http://www.drugs.com/nda/junovan_070509.html
AND
http://www.drugs.com/nda/provenge_070509.html

Silent Auction

2007-05-26T08:42:00.001-05:00

The best places to go to find support for your Team Sarcoma are the local businesses that you and your family patronize regularly. I approached our first business, a French restaurant that we go to for special occasions 2-3 times a year, with great nervousness and trepidation. Would they see me as an opportunist, seeking to capitalize on our association? No! I was greeted warmly, treated with great kindness and came out of it with a $70 gift certificate!

My team-mates Elena and Chrystie had a meeting, brainstorming, what could we do with this item to raise money? We came up with the idea of a silent auction. In a silent auction, you set up tables with the items available laid out, each with a piece of paper for people to put down their names and the amount they bid on that item. At the end of the day, the person with the highest bid wins. Ooo, ooo, now I get to design another form - the Silent Auction bid form! The team is off and running, collecting more gift certificates, free passes to wineries, items that can be compiled into gift baskets, who knows what else will be added by the time we're done! I'll update this blog entry with the items as they come it. Our first:

Cafe de Paris, Columbia, MD $70 Gift Certificate!

Thanks for reading my blog!
Elizabeth
www.becgoteam.com!

Team Sarcoma 2007/Bradley - California

2007-05-25T06:44:00.000-05:00

Team Sarcoma/Bradley now has two geographic sites! B's sister Brandi has created Team Sarcoma 2007/Bradley - California which will have a 5K Walk Around the Lake in Mission Viejo, CA. A true "sister team" ..... Welcome, Brandi and team!

http://www.bradleycalifornia.blogspot.com/

~ Elizabeth
www.becgoteam.com!

LSSI 2007/Bradley Website Updates - Get Your Forms Here!

2007-05-24T06:31:00.000-05:00

Liddy Shriver Sarcoma Initiative/Bradley

The official Team Sarcoma/Bradley website now includes the following links to forms and other interesting information!

Forms For Sponsors

To sponsor Brad and Elizabeth for their participation in the Liddy Shriver Sarcoma Initiative Team Sarcoma 2007

To sponsor a Walk Around the Park participant

Forms For Walk Participants

To Pre-register as a participant in the 5K Walk Around the Park

For walkers to collect pledges for their participation in the 5K Walk Around the Park

Map of the 5K walk

~ Elizabeth
www.becgoteam.com!

5K Registration Form - Preregister to get T-shirt and Bracelet!

2007-05-23T17:40:00.000-05:00

Double-click the image to enlarge and print!
~ Elizabeth
www.becgoteam.com!

The Sarcoma Knows No Borders Bracelet

2007-05-22T16:16:00.000-05:00

One of the things that registered participants in the 5K Walk Around the Park will receive is a Sarcoma Knows No Borders bracelet.

"The background color is a swirl of a pathology slide of a sarcoma patient. The bracelet is reversible. "Sarcoma Knows No Borders" is printed on one side and on the other side the word "sarcoma" is printed in 13 of the world's languages. We use the phrase "Sarcoma Knows No Borders" because sarcomas can occur anywhere in the body and they don't discriminate on age, gender, race or creed and they occur in countries all over the world. Each bracelet is individually packaged and comes with a brief 'Sarcoma Facts' sheet"

If you are interested in obtaining some of these bracelets, please send a note to info@liddyshriversarcomainitiative.org.

~ Elizabeth
http://www.becgoteam.com/

Sign up Sponsors with our New Sponsor Form!

2007-05-20T21:45:00.000-05:00

Double-click the image to enlarge and print!
~ Elizabeth
www.becgoteam.com!

REGISTER FOR THE 5K WALK AROUND THE PARK!

2007-05-20T21:20:00.000-05:00

TEAM SARCOMA/BRADLEY 2007

5K WALK AROUND THE PARK

The friends and family of Bradley Rice and the Liddy Shriver Sarcoma Initiative are joining forces to help increase public awareness of sarcoma and raise funds for sarcoma research. Please join us in Baker Park on July 22 for a scenic 5K Walk around the Park and help us fund a sarcoma-related research grant in Bradley’s name.

Pre-registered walkers will receive a Team Sarcoma 2007 T-Shirt and a “Sarcoma Knows No Borders” wristband. Please register no later than June 8 to allow time for shipping! All walkers are encouraged to obtain one of our Pledge Collection forms to sign up sponsors. If you are unable to walk, your sponsorships and donations will be gratefully accepted!

We will have snacks and sodas in the gazebo throughout the day. At the end of the day, there will be a drawing for generously donated, fabulous door prizes!

Also, as we end the day of walking, we will write on balloons the names of our loved ones who have lost their battles against cancer and release them in their honor and memory.

WHERE: The gazebo in Baker Park

WHAT TO BRING: Water bottle, sunscreen and a hat. Umbrellas if it’s raining.

DATE: Saturday, 7/22/07

TIME: 8:30 - 2:00 Join us anytime!

We do this walk in memory of Bradley Rice, who died too young.

Visit http://www.becgoteam.com/ or call Elizabeth at 410-715-9746 for registration details.

A Too-Big Newspaper Ad

2007-05-20T19:51:00.000-05:00

I haven't gotten the publisher's requirements for ads in the paper yet, but here's my first design. We'll see how much it changes before it's run.

4-page folded flyer

2007-05-20T19:08:00.000-05:00

These two documents can be printed back-to-back/landscape and folded to create a 4-page flyer. The picture on page 2 was taken while B was in treatment. Pages 1 and 4 are below. Pages 2 and 3 are above. Don't ask.

Proper 5K versus the Mosey

2007-05-18T12:10:00.000-05:00

OK, so people have been asking me how long the walk is going to be and exactly where it would go ... and I've been saying well, um, I haven't gotten around to that yet ... no, no specific distance, people can walk as far as they want to .... and that turned out not to be a good answer, though moseying around parks always sounds lovely to me. The problem was that, back in March when I first started thinking about this, I couldn't find any good maps of the park, much less marked routes.

Clearly, the time had come to tromp around the park with a cheapie pedometer and attempt to select a route and estimate distance. Before starting, I stopped in at the Dept of Parks and Recreation at Baker Park to ask about acceptable means to mark a route - ribbons? signs? No need! The smiling, helpful attendants presented me with brand new, fresh-off-the-presses, pre-marked maps, one of which was a measured 5K route! I tossed the cheapie pedometer aside, scanned the map, added notations of helpful landmarks, and here it is. We are now doing a proper 5K instead of a mosey. Double-click the image to enlarge.
~ Elizabeth
www.becgoteam.com!

Craft Night at RMH

2007-05-16T17:28:00.000-05:00

After the Wish List Drive for the Baltimore Ronald McDonald House is over, I'm moving on to Craft Nights. All those trips to the craft stores to get the doodads for the donation boxes opened my eyes to a whole world of kids crafts. Here are some of the things that look like they'd be fun - maybe the kids will like them too :-)

~ Elizabeth

www.becgoteam.com!

Walk Around the Park Pre-Registration Form!

2007-05-16T17:21:00.000-05:00

OK, so we have a bunch of people coming to the Walk Around the Park. That's what I hear, and it's good to hear! The Shriver's are generously shipping to us "sarcoma knows no borders" wristbands and Team Sarcoma T-Shirts. They need to know how many. And what sizes. Thus is born the pre-registration form, to capture these details so that as many people as possible can take advantage of this opportunity. As usual, double-click the image so you can actually read it.
~ Elizabeth
www.becgoteam.com!

New Sponsor Form - Give by Credit Card!

2007-05-16T17:13:00.000-05:00

Zowie, we now have a sponsor form that includes the option to give by credit card! There is a 3% fee to use the service, so for every $100 donated, LSSI gets $97, but that meets the goal of holding administrative expenses to 3% or less. Here's the new Sponsor Form. Double-click the image to enlarge the image. Now I have to update the sponsor form on the Team Sarcoma 2007/Bradley website, which, in case anyone has forgotten is www.becgoteam.com!

Marinol

2007-05-15T09:07:00.000-05:00

Marinol, as some of you may know, is a cannabinoid pharmaceutical product (Solvay Pharmaceuticals) that uses a synthetic version of THC - the stuff found naturally in marijuana - to control nausea and increase appetite. When Bradley was ill, we asked more than one doctor about Marinol as he was having difficulty with side effects of traditional nausea reducers. They hemmed and hawed, looked the other way, and did not offer an RX for Marinol. So we were left with either continuing to experiment with the usual stuff or going afoul of the law to procure a "cannabinoid" product on our own. That was a couple of years ago.

Lo and Behold, at Ms M's last oncology visit, I picked up a box of tissues in the infusion center on which was an ad for Marinol in bold orange, "A unique pathway to multiple benefits"! How's that for spin! And out there for all to see and request. There is progress in this world after all.....

Blue Days

2007-05-14T09:53:00.000-05:00

It's a sad day in the world of my on-line Ewings Sarcoma support group. In the last month, we've lost 4 young adults to the beast. Others are in end stage, or opting to end treatment because it can only make them sick but not cure them. Of those that are in remission, several struggle with the kind of heart problems that are usually associated with old people (caused by chemo), long-term radiation damage and/or face on-going orthopedic surgeries to replace prosthetics. Blech. The disease sucks, the treatments suck, the after-effects of the treatments suck. Please pray to the god of your choice for a breakthrough, to hear "Eureka" come from the labs, for hope.
~ Elizabeth
Fight for the Cure
www.becgoteam.com

There's ALWAYS room for lasagne

2007-05-09T15:27:00.000-05:00

On my last visit to the Ronald McDonald House, I asked Joshua Harden (the volunteer coordinator) if they needed more lasagne, and he replied with a big grin, "There's ALWAYS room for lasagne!"

So, here's what a bunch of single-serve lasagnes look like by the time I'm done with them. The fully baked lasagne is divided into freezer safe, snap & seal containers. The ingredient labels are printed on 3 1/3" x 4" white mailing labels (Avery template 5164) and slapped on the top of each container. This way people with dietary restrictions can figure out whether they can eat it or not. I stay away from things that kids traditionally object to, like big chunks of mushrooms, onion or peppers. There are chunks of tomato in the Bertolli, sorry kids. The goal is to provide quick energy on the fly, coverage for missed meals and comfort food for late nights.

=======================================
What’s in the lasagna?

Organic Bertolli Spaghetti Sauce with extra seasonings:
Minced onion, minced garlic, oregano,
parsley, salt, pepper
Noodles
Mozzarella cheese
Ground beef
Cottage cheese
Parmesan cheese

ENJOY!
=======================================

This is the specialized container that I use for transporting the frozen lasagne to Baltimore. It's lightweight, insulated and, best of all, ensures everyone sees me coming in the door.

Until next time, Lasagne Lady Elizabeth

Visit my website

www.becgoteam.com

"A Forgotten Cancer" Video Presentation and Translations

2007-05-09T09:36:00.000-05:00

The video presentation “A Forgotten Cancer”, which is part of the editorial “An International Sarcoma Awareness Week” in the April 2007 issue of ESUN, has been translated into Chinese, French, Italian, Japanese, Polish, and Spanish. Toward the end of each of these translations, a link is given to sarcoma centers and sarcoma advocacy resources in China , France , Italy , Japan , Poland , and Spain respectively. These translations were made and the resources identified with the help of sarcoma oncologists, patients, and survivors in each country.

The original English version is at: http://tinyurl.com/35l7mz Resources in English: http://tinyurl.com/2gnaq3 and http://tinyurl.com/z63uq

You can use the following links to access the translations:

Chinese: http://tinyurl.com/2txmf8
Resources in China : http://tinyurl.com/2tsjge

French: http://tinyurl.com/ysejjr
Resources in France : http://tinyurl.com/3xl7dw

Italian: http://tinyurl.com/2ls7mc
Resources in Italy : http://tinyurl.com/3bqv7e

Polish: http://tinyurl.com/3af9ng
Resources in Poland : http://tinyurl.com/2vh4nv

Japanese: http://tinyurl.com/296rfh
Resources in Japan : http://tinyurl.com/yr46sa

Spanish: http://tinyurl.com/25auzr
Resources in Spain : http://tinyurl.com/37kbzy

The Editorial, “An International Sarcoma Awareness Week” is located at http://tinyurl.com/2eokjt.

Ms M

2007-05-02T15:37:00.000-05:00

Wow, it's been so long and I've yet to post an update on Ms M. Ms M is the client I drive to chemo every week as part of the American Cancer Society Road to Recovery Program. Ms M is a lovely elderly lady who has a cancer that is only kept in check by chemo but cannot be cured. She manages to keep her spirits up most days and always has a friendly word for those she meets at the chemo center and pharmacy. Now, because of her advanced age and weakened condition, some family memers have moved in with her to help out. While she appreciates their help, recently she's been grumbling a bit about how it would be nice to have her place to herself again. To sum up without getting into detail, she just wants to be able to do what she wants, when she wants to do it. It made me a little sad, for in essence, she was saying the exact same thing as Bradley during his treatment. Young adult and elderly patients often have this in common - they want privacy and independence. Fiercely. They want to tell all the middle-aged people who are suddenly all in their business to please just do what they have to do, as far as helping, and then GO AWAY! It's sure not unreasonable. Unfortunately, when therapy isn't going as well as you'd hope, someone needs to be there to pick up the phone when fevers spike, or when a hundred other things go wrong. The state of cancer treatment programs is getting better, but we're sure not where we need to be. Thanks for reading my blog!
Elizabeth
www.becgoteam.com

RMH Wish List Donation Drive Box: Decorating 101

2007-05-02T11:55:00.000-05:00

There are two posters in a set. The white sign is mounted to the back of the donation box so that people see it at eye level. Foam board is used for the white sign, as it needs to stand up straight. It includes a large printout of the wish list and an envelope containing a smaller version printed on index-cards. The blue sign is attached to the front of the box. It includes an RMH information sheet and a large printout of the wish list.

Shopping List / things to look for around the house
White foam board
Blue poster board
Wide blue Duck Tape
Blue Scotch painters tape
Laser inkjet white index cards, for the take-along wish lists – Avery template 5388
Inkjet & laser compatible matte white 8.5 x 11 sticker paper, for photo and logo images
Clean white 8.5 x 11 paper, for printed material attached to the posters
Kitchen, school and baby-themed stickers of items on the wish list
Self-stick glitter paper for the star on the blue poster, unless you can find one in the sticker aisles of your craft stores.
Blue “Ronald McDonald House” – Colorbok Blueberry Casual alphabet stickers. There’s no size on the package, but they measure 1 ¼”. 2 packs are required for one box.
Sparkly blue “Wish List Drive” – RoyalBrites Project Works Letters 1.5 x 1.5”. 2 packs are required for one box.
White “Our House is Full” – PermaSign Helvetica Caps Self-Adhesive vinyl letters 1”, found in the sign-making department, not the craft department
Red “We Need Your Help!” – PermaSign Helvetica Caps 2” vinyl letters
Big Box – I used a U-Haul shorty wardrobe box
Blue envelope to hold index cards for take-along wish lists – this one was found in a desk drawer in a stationary set my mother bought me 20 years ago.
The “aluminum foil” and “tall kitchen bags” labels on the wish list are cut from packages from our kitchen and applied with clear tape.

Technically speaking, if you do this the same way I did, you will need the following:
Color printer.
Photo image editor to resize the images from the RMH website. You may also be able to get assistance in re-sizing photos at your local printing shops.
Word processor to create large and small wish lists and information sheet.

Computer-based tasks:
Enlarge the photos and logos from the website or have them enlarged and saved to *.jpg files.
Print the photos onto the sticker paper.
Print a small-print version of the wish list onto the index cards.
Print two copies of the full-size wish list. Change the default bullet color to red to make it more visible. Add a red border.
Print one copy of the RMH Information page. Use the same border that was used for the wish list.

Crafty tasks:
Cut out the photos and logos in shapes that suit the design. Use sharp scissors to avoid wrinkles.
Cut out the star from the glitter paper if you couldn’t find one on the shelves.
On the white foam board, put a piece of the wide blue duct tape about 8” from the bottom of the sign to denote the point at which the sign meets the box.
Use the wide blue duct tape to create a border around the white foam board, to both protect the edges and provide a frame for the poster. I positioned it with ½” on the front of the foam board and wrapped it around to the back.
Tape the 8.5 x 11 printouts on first, using the skinny blue tape.
Stick on letters using a straight edge as a guide. No pencil line is needed; if it looks like a child did it, so much the better.
Stick on the rest of the stickers.
Tape the blue envelope where it will be seen, folding back the top of the envelope so it’s not in the way. Put the take-along index cards in the envelope.

VOILA!
With any luck, you will have done in a few hours what it took me two weeks and five trips to the craft stores to figure out!!

Hey, Someone Took Down My Flyers!

2007-04-18T18:34:00.000-05:00

GRRR. Yesterday, I went to a store where I'd put up two flyers on opposite ends of a community bulletin board and someone had taken them down! BOTH of them! This must be one of the risks you take with random posting, but you have to wonder what would possess someone to single out these. Maybe it was someone who was so excited by the message they had to take them home and into their communities to hand out! Yeah, that's the ticket! They'd left behind other stuff that looked old, so my niece and I went to the customer service desk inside to ask what the policy was and sweet-talk as needed. She informed us that "as long as it's a charity" it can go up. So we went back out and cleared a spot between the realtor's business cards, handyman ads and insurance seminars held 2 months ago (all working for charitable purposes, I'm sure) and this time I taped it up, but good, so the next flyer-thief will have to work at getting it off, not an easy grab and run like the last ones. Here's the flyer. The ones that were taken were printed on legal size, yellow paper. Once the weather warms up, I may dust up an old bike for going to the local stores to find more places to put these. Wish me luck.

Good Stuff Other People Are Doing

2007-04-16T13:06:00.000-05:00

First off, and totally off topic, the first person I'd like to recognize for outstanding achievement is my nephew Pat, who has attained the rank of Eagle Scout. Here he is with his dad, Clayton, dressed as we usually see him:

and here he is, blurry (sorry! trying to use the fancy settings on the camera did NOT pay off this time) and in uniform before they replaced his necker-thingy with the Eagle bandana.

Another cool development is the release of this new video presentation by Bruce Shriver. It's entertaining and educational at the same time, no small accomplishment when you're talking doctor stuff.

http://www.liddyshriversarcomainitiative.org/index.html Scroll down to the blue box labelled "A Forgotten Cancer”

And, from the April issue of ESUN, the websites of other Team Sarcoma's. It's good to be part of a team with such amazing diversity.

Team Sarcoma UK

http://www.torquaypixel.co.uk/

KeeperEdge for the Cure

http://www.keeperedge.com/pages/keeperEdgeCares.html

Melissa Kramer's website

http://ts2007mel.com/

Elizabeth Munroz 's Blog

http://chondrosarcoma.blogspot.com/

The Shorty Wardrobe Box

2007-04-09T10:02:00.000-05:00

The U-Haul Shorty Wardrobe box looks like a good fit for the RMH Wish List donation box. The dimensions allow for foam board or poster board to be attached without anything having to be cut and there's plenty of room on the upper flaps for decorations. 4 of them will be arriving at my door within a week - and I got free shipping. Mission accomplished!

Doodles

2007-04-06T18:00:00.000-05:00

Double-click to view a larger image.

Ronald McDonald House Wish List Donation Drive

2007-04-05T14:34:00.000-05:00

Whew, now that the website is up and running, it's time to work on another project for the RMH! This time, I'm organizing a wish list donation drive. The plan is to put big boxes with hand-made signs in the lobbies of buildings near a guard's desk or an office where someone can keep an eye on it. Over the next few days I'll doodle out ideas for the sign, get the crafty stuff to create the first one and take it to the RMH for review. Considering my general lack of creative talent, it should look childlike enough.... I have to let them know the locations the boxes will be in, so I'll make lists and phone calls to find at least 4 good places where they'll be noticed and safe. Once they're in place, I'll check them a couple of times a week and take the donations to the House. The complete wish list is posted on the website below.

http://www.rmhbaltimore.com/partners/wishlist.html

The requested donations that'll be listed on the sign will be the items below that one can reasonably expect a person to bring to work and which are available in nearby stores. Let's see, that would include:

diapers
*laundry detergent
*toilet paper
*Coffee
*Sugar and sweetener packets
*Powdered creamer
*Dish soap
*Dishwasher detergent
Sponges
Kitchen towels
Oven mitts
Paper towels
Napkins
Zip-loc baggies
Plastic bags (all sizes)
Aluminum foil
Plastic wrap
Paper plates/cups
*Non-perishable food items/snacks
*Trash bags (55 gallon & 13 gallon)

The items with a (*) are needed urgently. What many people might not realize is that not only do the families of sick children stay at the house, but as often as possible, the children stay there too, with their parents and siblings. It's a true family house so they need the same things we all need for day to day life. Can you imagine having to keep 52 families in toilet paper for a month? Wow. I sure hope we get a lot!

Team Sarcoma/Bradley Website is up!

2007-04-03T23:48:00.000-05:00

Visit us at www.becgoteam.com

Thanks to the Shrivers for their contributions and feedback, and to my husband Brad for webmastering!

Final Door Hanger

2007-03-30T10:59:00.000-05:00

Here is the version of the door hanger as it'll print on the perforated paper (the X shows where the doorknob goes). I'm taking it to Staples to make copies onto our bright yellow paper. It'll be a color copy so that the photo doesn't disappear. They'll do a test run to make sure the perforations don't tear in the copier.

Gazebo!

2007-03-29T14:26:00.000-05:00

Here is the gazebo in Baker Park in Frederick, as modelled by my grandson, Noah! It's near the band shell and the rec center. I've put in an application to rent it on 7/22/07 from 8:30 a.m. - 2:00 p.m. The lady on the phone said it's available, so unless another application hits her desk before mine, this is where we'll be meeting up for the Walk!

Sunshine Door Hangers and Websites

2007-03-27T13:03:00.000-05:00

Wow, those door hangers sure came fast. Thanks, folks at Burris! Check out "sunshine" below. In natural light it looks very neony, like those extra-bright highlighter markers. I don't think anyone will leave this one hanging on their door for long. We also now have our own website. After shopping web hosting providers, we chose Verizon. For $15 a month, we get our URL - www.becgoteam.com (hey, it wasn't taken) - and fairly easy-to-use web design software. There's nothing on it now; this is just a tease. HA! Check on it later...
Elizabeth

The Creative Process

2007-03-23T17:11:00.000-05:00

Those of you who have ever heard me talk about my job know that the documentation I create is bone dry, objective stuff devoid of creative expression. For the past several years it has been my goal to remove all sense of magic from software systems. Normally, I don’t have any sense of writer’s block because the documents I need are what they are, so I just sit down and do it. Weeelllll, things didn’t go so smoothly when I sat down to write up some promo stuff. I now understand why people get paid to do these things.

To follow the model that has served me so well on the job, I asked the Shrivers for samples of what other teams have done to promote themselves and guidelines on what to put in literature that would be made available to the public. So I started toying around with website pages, a newspaper box flyer, hand-made bigger posters for the Giant that Bradley worked at and BNA’s lobby but hadn’t made much headway. Most of all I really wanted to put out doorknob hangers. I say I wanted to do this, not that I did it because I just couldn’t get jump-started. I thought it would help if I had a real piece of paper to doodle on.

OK, all I wanted was to buy some door hanger paper stock that I could put in my home printer and print out a quantity of promo pieces that I can easily distribute in my neighborhood (no newspaper boxes allowed). Bradley walked to school for 5 years, so there’s a good chance people would recognize him if I put a good quality black and white photo on a colorful door hanger. I quickly found out that this was easier said than done. I couldn’t find the doorknob hanger paper stock anywhere, even after searching all the usual suspects online (Staples, Avery, Xerox, finally reduced to Google). Finally, I found this site,

Burris Computer Forms Door Hanger
http://www.pcform.com/doorhanger.asp?gclid=CNaeoITa8YoCFQWMgAodq0nUkQ

which let me fill out a form online to request a sample packet. Suuure. I filled it out skeptically, but lo and behold 4 days later, I had a really nice set of samples in my hands. Looking at them, turning them over, putting them on my own door, the ideas started coming. How to convey a persuasive message in such a small space? I came up with these two first.

In Memory Of
Bradley Rice
-- picture ---
1986-2006
Support Team
Sarcoma 2007
Contact Info

Or, with tongue in cheek...

In Memory Of
Bradley Rice
-- picture ---
You - Tax Break
Us - Hope
Support Team
Sarcoma 2007
Contact Info

After that, it didn’t take long to create good working drafts for a press release, a longer version for a flyer, a layout for the website that includes a link to the sponsor form in .pdf format and Bradley’s story, which Brad will work on too.

Any other virtual team sarcoma folks who see some value in these, feel free to borrow them for your team. Or copywriters looking for some freelance charity work, here’s an opportunity! Drafts to be posted later…..

On the Road with ACS Road to Recovery

2007-03-18T18:36:00.000-05:00

Woo Hoo, I just got a call from the American Cancer Society (ACS) volunteer who does rider/driver coordination for the Road to Recovery Program! I have my first "client". I'll be driving a lady (I'll call her Miss Mary) to weekly chemo starting next Monday. The oncology center she goes to isn't far from my home, so I'll be able to drop her off, talk to the staff to find out how long she'll be there and go home until she's ready to be taken home. Considering how much time I'm used to spending on the road with our commute to DC, this one will be a piece of cake! I'm looking forward to it.

For more info on the ACS Road to Recovery Program:
http://www.cancer.org/docroot/COM/content/div_MidAtlantic/COM_4_2x_Road_to_Recovery_Volunteers_Help_Cancer_Patients.asp?sitearea=

ESUN Bulletin: An Urgent Call to Action

2007-03-15T11:44:00.000-05:00

The following is reproduced in its entirety from the Electronic Sarcoma Update Newsletter (ESUN). To see it with all the proper formatting, you can go to the original:
http://www.liddyshriversarcomainitiative.org/Newsletters/V04N01/editorial.htm

An Urgent Call to Action
Unfortunately, funding at the Federal level in the United States for cancer research and control has been level for the past several years. Contrary to what you may believe, the actual budgeted and allocated funds for the National Cancer Institute (for cancer research) and for the Centers for Disease Control (for cancer control programs) has not increased. To the contrary, when you factor in a 3-5% inflation rate, actually funding has been decreasing by about $150 million per year.

This decrease in funding will undoubtedly have serious effects on a rare cancer like sarcoma. One can easily project that it will be increasingly difficult for sarcoma researchers to obtain funds for basic research in many of the important areas that offer promise today. It will also be increasingly difficult for these researchers and their colleagues to begin or continue the small and large scale clinical trials that are needed to move basic science results into effective treatment protocols. Notice, I use the phrase “to continue.” One can easily project a scenario where decreasing budgets will potentially result in the situation where some clinical trials currently in progress cannot continue because of the lack of funding. This would, of course, have extremely serious consequences for patients and their families and the cancer centers and hospitals involved. There have recently been efforts within the international sarcoma research community to concurrently undertake clinical trials in several nations. Some of these efforts might also be in serious jeopardy if the funding in the United States for sarcoma research continues to decrease. As an example of the disastrous effects of the reductions in cancer research funding, see the sidebar on SWOG, below.

SWOG’s Dilemma: An Example of the Problem
The Southwest Oncology Group (SWOG) is one of the largest cancer clinical trials cooperative groups in the United States. Funded by research grants from the National Cancer Institute (NCI), the Group conducts clinical trials to prevent and treat cancer in adults, and to improve the quality of life for cancer survivors. SWOG is a network of more than 5,000 physicians who work in a variety of medical settings and have a strong interest in bringing innovative cancer treatments to their patients. SWOG trials are conducted by investigators at more than 550 institutions, including 17 of the National Cancer Institute's 61 designated cancer centers. You can read a memo that Dr. Larry Baker, SWOG’s Chair, wrote to the SWOG members in December 2006 about the difficult decisions that SWOG is facing in light of significant reductions in its NCI funding by clicking here. You can easily speculate that similar discussions are underway in cancer research facilities throughout the United Stated.
Additional insights in the severity of the problems induced by reduced cancer research funding are articulated in the article, Prepare and Plan for Financial Constraints on Clinical Trials, which appeared in the January 2007 issue of the Journal of Oncology Practice, Vol. 3, No. 1, pp. 37-38. Click here to view this article.

Unfortunately, the burden for funding sarcoma research is falling increasingly on sarcoma advocacy groups and foundations. Also, some pharmaceutical companies are playing an important role in clinical trial support for some types of sarcomas. In addition to supporting basic research, funds from advocacy groups and foundations have gone to support the development of research infrastructure (e.g., buying equipment, acquiring space, funding tissue banks, hiring lab technicians, and paying indirect and administrative costs) — expenditures that many would argue should be paid for by federal budgets. The importance of sarcoma advocacy groups and foundations, particularly in times of decreasing public funds, cannot be overstressed. We will always have to fend for ourselves if Congress and NIH cannot be influenced to act on our behalf. Just as the efforts of sarcoma advocacy groups and foundations have been producing results in funding sarcoma research and research infrastructure, we as individuals can work on behalf of the sarcoma community in the public arena.

I urge those in the United States who read ESUN to contact their Representatives and Senators and urge them to reverse this downward trend in the funding for the “War on Cancer” and to increase the funding for the National Institutes of Health. Strongly recommend that they explicitly target some of the funding for sarcomas and other rare cancers. This is an urgent issue as the current Congress begins its debates related to the budget. I recommend that you write to your Representative and Senator soon. I am also suggesting that you encourage your family, friends, colleagues and anyone who wants to support research to help find a cure for sarcoma to write such a letter as well.

Click here is obtain your Representatives’ address in the US House of Representatives

Click here to obtain your Senator’s address in the US Senate

A sample letter that you might consider sending follows the end of this editorial. You are encouraged to personalize it to suit your needs.

At best, At worst
Arthur Beckert, Executive Director of the Sarcoma Alliance in reflecting on these issues in the Sarcoma Alliance News (Vol. 5, No. 3) last year said, “If President Bush’s proposed budget passes, opportunities for treating, preventing and eliminating cancer will, at best, hold stagnant. At worst, cancer deaths will begin to rise again. This could have particularly dire consequences for sarcoma research since it already gets such a small piece of the pie.”
For an additional discussion of the impact of the decreased funding see the article, “Funding Concerns Hit Some Cancer Trials”, by Amy Dockser Marcus, Wall Street Journal, February 7, 2007, Page D3.

If we don’t speak out, who will? There is strength in numbers.

Bruce D. Shriver, PhD
Editor-in-Chief, ESUN

[End Note: The above editorial was distributed as an "ESUN Bulletin" last week to the ESUN Notification list because of the urgency of the situation and the upcoming date on which Congress must act on budgets that will affect cancer research and clinical trials in the United States. All agencies under the US Department of Health and Human Services, which includes the National Institutes of Health and, subsequently, the National Cancer Institute, have been operating under a "continuing resolution," which extended the fiscal 2006 budget levels until February 15, 2007 when Congress must either pass the Fiscal Year 2007 budget or extend the resolution. Shortly after the distribution of the editorial it was learned "The budget cutbacks will affect trials for all cancers, but especially those studying sarcomas, and head and neck cancers.The Southwest Oncology Group will halt all sarcoma, and head and neck trials. The Eastern Cooperative Oncology Group will eliminate its brain and sarcoma trials. Many other groups will delay various late stage cancer trials, thus, pushing back possible new treatments for needy patients"; see Federal Funding Constraints Forces Elimination of Cancer Trials.]

Sample Letter

Date

Senator’s/Representative’s address

Dear Senator/Representative X:

RE: Funding to support cancer research

We are turning the “War on Cancer” into an under funded skirmish and jeopardizing our ability to make substantial progress in finding a cure for cancer and to affect the quality of life of the hundreds of thousands of families dealing with cancer.

I am very concerned about the dire effects on basic cancer research and clinical trials given the level of funding for cancer research that Congress has targeted for NIH over the last several years. I urge you and your colleagues to work to increase funding for cancer research in general and to specifically earmark a portion of these funds for sarcomas and other rare cancers.

I am particularly concerned about the urgent situation facing biomedical research in the United States due to inadequate funding and strongly recommend that you actively sponsor and support legislation to protect the nation’s biomedical research program by significantly increasing funds to NIH. Please act now to support a significant increase in funding for cancer research in Fiscal Year 2007 and beyond until this disease is conquered.

Sincerely yours,

Name
Address

Lasagne for the House

2007-03-15T11:16:00.000-05:00

Today I talked to the volunteer coordinator at the Ronald McDonald House and I'm on to bring lasagne's for their freezers next Tuesday. I'll bake 3 pans worth, divide it into individual serving containers and freeze it at home. I've got labels to go on each container that list the ingredients to help people with allergies or restricted diets figure out if they can eat it or not. I'll also bring magnets and colored notecards to put on the fridge doors letting people know the lasagne is there ("Missed meal? Need a midnight snack? Help yourself to lasagne in the freezer!"). See, the problem with having a sick child is that mealtime becomes whenever you find time to eat a meal. That might not coincide with the time dinners are served (cooked and served by volunteers) at the House or anywhere else nearby. Brad and I spent many a night trying to find something resembling a healthy meal within walking distance of UMMC - not fast food, but not resort hotel fare either - and after hours it just doesn't exist. If a little homemade food boosts one family's spirits for one evening, my mission is accomplished!

Today I'm also starting to work on Bradley's story. In the past couple of weeks, I got all excited and gung-ho about creating some flyers, doorknob hangers and stuff for Team Sarcoma, but couldn't quite get my writing hand going to come up with a design and the right language. Then I realized that I can't create this promo stuff without re-connecting with our experience and reminding myself of our motivation - that no one should have to go through this as we did with so few options, that the current treatments are so barbaric and it's criminal that the federal government has cut funding to NIH/NCI so much that sarcoma research would grind to a halt without private funding. Yep, that oughta get the words flowing! I'll get it started with the factual chronology, then Brad and I will add our personal notes to fill it out.

Goals

2007-03-12T06:44:00.000-05:00

One whopping week into the sabbatical and I'm already antsy about setting and meeting goals. This weekend, over wine and guacamole dip with friends, I contemplated the meaning of goals, exactly what my short and long-term goals are, how to divide bigger projects into smaller tasks, on and on ad nauseum. Thank goodness for good friends like the Shoemakers and my wonderful husband who advised concentrating on weekly goals rather than how to use every minute of every day. As if the universe agreed, the next morning I opened the Washington Post Magazine to this Dilbert. There's perspective for you! Now to plan my weekly goals......

Sponsor and Donation Form: Liddy Shriver Sarcoma Initiative/Bradley

2007-03-09T11:43:00.000-05:00

Here is our team's Sponsor and Donation Form! Double-click the image for a larger view and to print it out. If you want a copy of this form in Word or PDF, send me an e-mail at egr2058@yahoo.com and I'll send it to you. All donations made using the notation "Liddy Shriver Sarcoma Initiative/Bradley" on the memo line of the check will be credited towards a research grant that will be made in his memory. It would be wonderful if the research project funded in Bradley's memory were to result in a breakthrough leading to a cure for this horrible disease. That's what we're shooting for! Next I'll be working on some promo pieces that can be posted in grocery stores, community centers, doctor's offices, wherever we can find a piece of public bulletin board space. Look for that in the next couple of weeks!

Research Grants to be made in Bradley's Memory

2007-03-09T09:52:00.000-05:00

In my latest conversation with Bruce Shriver, he explained that the grants funded through our efforts will be made in Bradley's name. This means that when a cancer research facility receives a research grant that has been funded using the money we raise (as denoted by a memo line of the checks reading "Liddy Shriver Sarcoma Initiative/Bradley"), the doctors involved will know that this funding came from the hearts of those of us who knew and loved Bradley Paul Rice. The thought brought tears to my eyes. Here is a sample of how past grants have been awarded in this way:

The following is quoted from The Liddy Shriver Sarcoma Initiative website
http://www.sarcomahelp.org/Funded%20Research/funded_research.htm

December 2006 — The Liddy Shriver Sarcoma Initiative is pleased to announce the funding of two research projects at the Huntsman Cancer Institute at the University of Utah. The two grants, totaling $50,000, are being made in memory of Liddy Shriver, Brian Morden, Krystle Smith, Shane Duffy, Conor O'Sullivan, Paul Onvlee, and Allen Strehlow and to honor those currently fighting this disease. Both of the studies will be directed by Stephen Lessnick, M.D., Ph.D. at the Huntsman Cancer Institute. The ultimate goal of the first study, “New Approaches for EWS/ETS Detection in Ewing’s Sarcoma” is to improve physicians’ abilities to provide an accurate diagnosis of Ewing’s sarcoma to patients, to provide physicians’ with molecular data which may be relevant to prognosis, and to provide a new non-invasive assay for the measurement of treatment response. The goal of the second study, “Analysis of NR0B1 in Ewing’s sarcoma” is to help to characterize the molecular mechanisms involved in Ewing’s sarcoma development. Additionally, by fully understanding these mechanisms, Dr. Lessnick and his team hope to identify new therapeutic approaches for patients with this devastating disease. These grants were made possible because a number of people worked very hard in obtaining donations to sponsor much needed sarcoma research.

Our First Sponsor?

2007-03-07T09:58:00.000-05:00

Good news! One of Team Sarcoma 2007 has a connection to a local newspaper in Frederick as well as a restaurant in Columbia! Yahoo! I'm looking at some free event promotion here! Today I'll be putting together ideas for flyers, door hangers, small posters and perhaps a bit of a website. Any artists out there? Printed materials may have to be black and white to keep costs down, so I could use some advice on what looks good in B&W. Pretty good progress for the first 3 days, I'd say! Cheers and a good day to all.

Getting Organized

2007-03-06T23:21:00.000-05:00

The first order of business this week was to set up my project workspace. For this, I chose the dining room table. Over the past 2 years, our dining room table has served as a safe haven, out of reach of our ADORABLE grandson, Noah now 2 1/2 years old. It’s been the place we've put photos pulled out from albums in the hutch, momentos from vacations, school work and any other fragile item for which there is no obvious good spot in the house. That put the remote control helicopters right next to my mother’s old English bone china potpourri pot, just recently handed down as my folks are downsizing. Noah is now fully capable of pulling out a chair and helping himself to whatever is on the table, so the timing is right to dig in and find homes for everything in those piles.

Here are the before and after photo’s of this effort. Sorry the helicopters were apparently skimmed off the top of the pile before the first picture was taken.

The Formal Sabbatical Description

2007-02-19T12:37:00.000-05:00

Here is my Sabbatical proposal, with some edits to protect the privacy of others:

In May of 2005, my stepson Bradley Rice was diagnosed with Ewing’s Sarcoma/primitive neuroectodermal tumour (ES/PNET), a rare form of a rare pediatric cancer of the bone and soft tissue. Because this cancer is both rare and aggressive it is best treated at a major cancer center using a multidisciplinary approach. We were quickly referred to the University of Maryland Medical Center’s Greenebaum Cancer Center, where an associate director for clinical research oversaw his care. Over the course of the next 10 months, Bradley completed 9 of the 14 rounds of the chemotherapy recommended for ES/PNET, had surgery to remove most of 3 ribs and 6 weeks of radiation therapy.

Our normally well-ordered lives were turned inside out. We could no longer make any plans more than a week into the future because of the complexity of Bradley’s treatment plan. We, who considered ourselves to be competent, intelligent people were totally daunted by the task of learning everything we needed to know about his condition, the treatment plan and the many decisions that would have to be made along the way. We learned not only the myriad symptoms caused by the cancer, but also the side effects of the chemo, the side effects of the medicines used to control the side effects of the chemo, and the medicines to, in turn, control the side effects of those medicines. We kept an oversized desk calendar on the dining room table to keep track of all the appointments and important milestone dates. The pharmacists at our local store knew us all by name. At the end of many of our days, we felt like we had been “run hard and put away wet”, to borrow an old saying. In spite of our and medical science’s best efforts, Bradley passed away on March 21, 2006.

Our entire family found the experience to be profoundly life altering. My personal priorities have changed in such a way that I now wish to engage in activities that improve the quality of life of cancer patients and their families. During my sabbatical, I plan to devote my time to the following four projects, each of which supports that goal.

1. Participate as a driver for the American Cancer Society (ACS) Road to Recovery Program.
2. Perform a variety of volunteer activities at the Ronald McDonald House (RMH) of Baltimore.
3. Lead a Team Sarcoma for the Liddy Shriver Sarcoma Initiative.
4. Create a CarePages chronology of Bradley’s battle with cancer.

At the end of the 6-months, I hope to look back and know that I was able to make the world a better place for people whose lives have been forever altered by the diagnosis of a life-threatening illness. I hope to make an impact both directly through hands-on work with the ACS and RMH and indirectly through fundraising and publishing the details of Bradley’s journey.

American Cancer Society (ACS) Road to Recovery
When people receive a cancer diagnosis, they have to deal with it where they are, along with their current problems large and small. In many cases, there is very little time to re-arrange one’s life in order to accommodate the most effective treatment plans. My husband Brad and I were EXTREMELY fortunate in that we are both long-term company employees with very supportive, caring management teams. We were able to arrange our schedules as needed to drive Bradley to appointments in Baltimore on an average of 20 days in each month. During radiation therapy, he was at the hospital every day for 6 weeks, including some Saturdays.

We spent many hours at the infusion center, outpatient clinic and radiology nursing stations. From time to time, we would hear nurses say that a patient was a “no-show”, with much concerned murmuring. We knew that if a person was scheduled for chemo or radiation, it was for a good reason, not an optional choice. I wondered if some of the no-shows were sitting at home fretting because they could not get a ride.

For this reason, I contacted the Mission Delivery Manager for the South Atlantic Division of the ACS to get information about becoming a driver for the Road to Recovery program. She informed me that for Howard County, there is a great need for drivers, especially drivers who are willing to transport patients to the major medical centers in Baltimore. They currently have only 8-10 drivers, most of whom are retired and not able to drive into the city. My application for the program has been accepted and they have completed the background check of my driving record and vehicle registrations. I will start driving for the program once a month now, and will increase the number of driving days to 2-3 days a week if I am awarded this sabbatical. There are no time constraints on this project, as it is an ongoing effort for which there is always a need.

Ronald McDonald House
I have been a long-time financial contributor to the Ronald McDonald House of Baltimore, the only RMH in the state of Maryland. By complete coincidence, the RMH Development Associate called to offer me a tour of the house a month after Bradley was diagnosed. In the course of the tour, I learned a great deal about the many types of services provided by the house as well as some interesting details of how non-profits work and what the real needs are. The RMH can house up to 52 families at one time, all of which must have a child under 22 years old actively in treatment at one of five major hospitals in the area. They provide guests with breakfast and dinner, shuttle services to hospitals and a variety of entertainment options for the children. They rely on volunteers to prepare the meals and put together special treats, such as trips to museums, concerts and sporting events.

We were offered unlimited access to the house to take rest breaks, have meals, use computers and, most importantly, clear our heads of the medical information overload we were experiencing. We were fortunate not to require the services of the house during Bradley’s treatment. However, during his final hospitalization, family members arriving from out of town on short notice stayed at the RMH and it was a huge relief to have them there, minutes away from Bradley’s side.

I called the house to discuss opportunities for helping the RMH during the sabbatical. They are, of course, delighted as they can always use volunteer help with day-to-day tasks. In 2007, there will be a special opportunity to assist with a “Bedroom Remake” project. The project needs a person to contact several stores with on-line gift registry services (for example, Target, Crate & Barrel, Bed Bath & Beyond), set up and populate the registry with the items that the House needs, and write user-friendly instructions for accessing each registry to be included in e-mail notifications and post cards. I have never been interested in fund-raising, as it has always taken the form of making phone calls or knocking on doors. The gift registry style of acquiring products needed for the RMH represents a departure from any work I have ever done before. I hope that it gives me a new perspective on salesmanship and cheerleading for a cause. In this respect, I feel the RMH project will add to my skills in a way that would benefit my employer. The specific timeframe for starting work on this project has not yet been established, but it will likely begin in early Spring of 2007.

In addition to working on the Bedroom Remake, I would provide single-serving, frozen meals that can be available for families that miss the regular meals or cannot eat the meal for dietary reasons and assist families in creating their own patient CarePages. My volunteer application, complete with three references, has already been submitted and accepted by the RMH.

Liddy Shriver Sarcoma Initiative Team Sarcoma
Bruce and Bev Shriver founded the Liddy Shriver Sarcoma Initiative, a non-profit public 501(c) charity, after the death of their daughter Elizabeth (Liddy) in 2004. This paragraph from the Initiative website summarizes their goals:

The Liddy Shriver Sarcoma Initiative undertakes activities that help improve the quality of life for people dealing with sarcoma. Central to this mission are our goals of increasing public awareness of sarcoma and the lack of young adults in cancer-based clinical trials and raising funds for sarcoma-related research. We believe that increased public awareness of sarcoma will lead to increased research funding and that research will ultimately lead to a cure for sarcoma. (http://liddyshriversarcomainitiative.org/index.html)

It is important to me to contribute in a significant way to an organization that directly supports activities to find a cure for pediatric cancers and sarcomas. The core function of the Initiative is to raise money that is used to fund research grants to facilities specifically involved in finding a cure for sarcomas.

The main fund-raising activity consists of a main international Team Sarcoma bike ride and Virtual Team Sarcomas in local communities all over the world, following the model of the ACS Relay for Life. In 2005 and 2006, there was no Team Sarcoma representation in the state of Maryland or in DC. I would like to organize a local ride in 2007. As a team leader, I would recruit my team, select a route for either biking or walking, make maps, coordinate as needed with local officials, notify local news organizations of the event and find other creative ways raise public awareness. I have notified Bruce Shriver of my intention to serve as a team lead if I am awarded the sabbatical or a less time-consuming role otherwise. The event is held in early July, with planning starting several months ahead of that. Participation in this event would not only benefit all sarcoma patients, it would give me the opportunity to meet members of the Association of Cancer Online Resources (ACOR.org) Ewing’s Sarcoma support group that was of so much help to us during Bradley’s illness and with whom I continue to interact. As with the RMH project, this is a fundraising project that would give me experience in a new area.

POST-APPLICATION UPDATE:
Brad and I will be attending the Team Sarcoma 2007 international ride, which is being held in Vermont this year! My daughter and I will team up with local family members to also hold a local Team Sarcoma event in Frederick, MD while we are in Vermont. So we will hit both types of events this year! While at the international event, we’ll meet people from all over the world who have successfully hosted a variety of types of fundraising events. I’ll exercise my project management skills by picking their brains for task lists, what works where, and all the other stuff I don’t know now.

CarePages
CarePages is a free on-line service used by patients and their families to publish daily journals and photos to the web. They creator of the page gives extended family, friends and support group members the name of the page. After filling out a simple registration, others can access the page, post messages and opt to receive e-mail notifications whenever the page is updated. During phases of intensive treatments, the CarePage is a valuable resource for disseminating information quickly and easily to many people. Bradley’s condition was so rare, I found CarePages to be a gold mine of the type of information the doctors did not provide. Buried in these family-generated mini-documentaries, I found many tips and tricks for dealing with treatment side effects, better explanations for some of the procedures than those the doctors gave, previews of what we could expect if certain medical events occurred, and most importantly, insights into how young adult cancer patients feel and what they want.

I would like to create a CarePage for Bradley now, in his memory, for the benefit of others fighting ES/PNET. To create this page, I will collect our family calendars, Day Planners and notebooks and printouts of posts made to support groups. I will use the daily journal format to organize the information according to the phase of treatment. One day’s entry will describe the diagnosis phase, including which tests were done and what they proved. The next entry will provide the outline of the standard Children’s Oncology Group (COG) protocol for Ewing’s Sarcoma. I will proceed in a similar manner to provide the full chronology of Bradley’s treatment, including all appointments, details of each round of chemo, tests with results, when and why he needed transfusions, planning for and then undergoing surgery, how the decision was made to do radiation, and the aftereffects of the radiation. These details may seem dry and boring to most people, but those of us dealing with rare life-threatening diseases spend hours on the Internet searching for just these types of details and the unique perspective they offer. I did attempt to start the CarePage shortly after Bradley’s death; however, I found just the act of pulling out my old Franklin Covey pages was too gut-wrenching and I wasn’t able to continue. Since this will be an extremely emotional experience, I would focus solely on this activity for one week with no other obligations. There is no specified timeframe during which this must be done. I would likely work on the CarePage at the RMH in order that the families there can observe how it is done and ask any questions they might have.

The above projects are all related to improving the quality of life of sick children and their families, cancer patients in general and sarcoma patients in particular. The work of cancer-related non-profits is never done, so the timeframe for each is flexible at this point, except for the Team Sarcoma ride, which is always in July. I would have a unique opportunity to work with others who are passionate about finding cures, sharing information and simply helping others go through treatment with dignity. It is my belief that any act that contributes to the well-being of one individual benefits the community in which that person lives. Stronger individuals build stronger communities.

Hello World

2007-02-19T11:56:00.000-05:00

Hello, World.

This is the first blog I’ve ever created. I never felt comfortable with doing something that would be so full of I’s and me’s. Something important has come up, however, so I’ll have to learn to live with it, and let the I’s and me’s rip. It seems he best way to begin is to simply start, so here we go….

I always thought if I did one of these, it would be all about climate change, politics and social justice. I still care about those issues, deeply. Right now, though, at this very minute, there are a lot of sick people out there, people of all ages, who need help. They need the kind of help that is often met only by the efforts of sympathetic volunteers. So, in applying for this wonderful opportunity to take 6 months off work with full pay and full benefits (thanks to my outstanding employer, BNA, thank you, thank you!), I described the purpose of this sabbatical as a series of activities designed to "improve the quality of life of sarcoma/cancer patients and their families". Since the sabbatical application provides all the details of my planned activitites, I'm posting it separately.

Of course, it's one thing to write a proposal about the things you want to do and another thing to actually do them! There will be some evolution to the grand plan, as there already has been, and as it should be, as new opportunities reveal themselves. It is my hope that this journal will help all people who support my personal goals, or who are looking for ideas for their own initiatives, or who are in treatment and looking for encouragement that they are not alone, or who are simply bored and like to live vicariously through the blogs of others - whatever, whoever, HELLO!