Wednesday, October 3, 2007

Bradley's 21st Birthday

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

~ Elizabeth




Wednesday, September 26, 2007

SCHIP and why it matters

From today's headlines:

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

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

But then asks for this:

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

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

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

~ Elizabeth

Chronology of Bradley's Treatment, Part 5

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.

Blogging B's Story

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

Friday, September 7, 2007

Chronology of Bradley's Treatment, Part 4

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

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

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

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

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

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

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

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

Friday, August 24, 2007

Thank You's

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











Thursday, August 23, 2007

Another RMH Craft Hour

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

Monday, August 20, 2007

Seven More Project Linus Blankets

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

Wednesday, August 15, 2007

The Team Sarcoma Starter Kit

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

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

Monday, July 23, 2007

Vermont and The Walk - A Most Brief Update

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

Friday, July 13, 2007

Shhh, Don't Tell.....

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

Tuesday, July 10, 2007

Food and Flannel

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


Friday, July 6, 2007

All Signs, Big and Small

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/!










Thursday, July 5, 2007

TEAM SARCOMA/Bradley Baker Park Setup


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!

Tuesday, July 3, 2007

Delivery to Ronald McDonald House


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

Saturday, June 30, 2007

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

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

Thursday, June 28, 2007

BNA Turns Out for the RMH Wish List Drive!

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

Wednesday, June 27, 2007

Silent Auction Donations

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




Wednesday, June 20, 2007

Updated Walk in the Park Information

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

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.













Friday, June 15, 2007

Send in your Luminary Bag for Team Sarcoma Luminary Service

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

Wednesday, June 13, 2007

Meet the Beast

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



Thursday, June 7, 2007

What's Up With ClustrMaps?

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 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!

Tuesday, June 5, 2007

Kudos to Volunteers at RMH!

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

Monday, June 4, 2007

The Project Linus Easy Quilt Blanket Pattern

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

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/!