Wednesday, September 26, 2007

SCHIP and why it matters

From today's headlines:

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

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

But then asks for this:

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

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

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

~ Elizabeth

Chronology of Bradley's Treatment, Part 5

Two days before Thanksgiving we met with the radiologist and the day after that we met with the oncologist. Not a great way to spend the holidays. The pathology from Bradley's surgery showed the tumor sites in the rib area and the chest wall were completely resected successfully with negative margins. The biology of the removed specimens showed 20-40% necrosis (cancer cell death), which is not good. We’d hoped for at least 90% necrosis, leaving only 10% or fewer viable cancer cells. He would not have needed radiation if there had been a higher rate of necrosis. It gets confusing, because, as it was explained to us, the initial rounds of chemo are primarily intended to kill the sarcoma cells that are circulating in the body's system. The surgery and radiation then deal with the primary tumor site(s). Lastly, the chemo after surgery/radiation is supposed to clean up whatever's left. So, there are cases in which necrosis isn't very high, but the patient is able to achieve long-term remission. I guess it all depends on how aggressively the cancer is growing/spreading before treatment.

Bradley got a short round of chemo today (VC, #6) and started radiation next Monday. This required him to go to radiology every day for 5 weeks, 10 days of both lungs and the ribs, followed by 15 days of the rib area only. He'd lose some lung function, 10-20% of the left lung, but the docs said we all have more lung capacity than we ever use so that wouldn’t present any long term problems and he probably wouldn’t even notice it. The main side effect is fatigue, which builds up over the 5 weeks. He might also have soreness in the esophagus towards the end. There were some risks. A combination of radiation with some medications and chemo stresses the heart, so they were going to be cautious in using chemo, not so much because of the chemo itself, but to avoid using the white blood booster during radiation. There was also a chance of "radiation pneumonitis" which is an inflammation that occurs after the therapy is over in 10-15% of patients and is treated with anti-inflammatory steroids. B was done with the doxyrubicin (max for him is 375 of whatever units they measure by and he's had 360).

There is a downside to radiating the lungs. They do it because 60% of relapses occur in the lungs, yet the radiation increases his risk of secondary tumors in the radiation field. I couldn't fathom getting past ES only to fight another type of tumor down the road. Fortunately, Bradley was in good spirits, weaning off the pain medication and moving around more easily. Over the holiday, he had a good visit with his girlfriend and had lots of friends over. Bradley is now 5’ 11” and 148 lbs, which wasn’t bad after what he’d been through.

Dr Sausville 11/28-11/29/05 Chemo #6 VC (2 days) 2 hours fluids, 1-hour chemo, shot of Vincristine Hydropack for 24 hours No Neulasta due to upcoming radiation

CBC to make sure he can start radiation

12/05-12/16/05 10 days radiation to whole lung and ribs

12/06 Dr Sausville

12/13 Dr Sausville

12/16/05 Chest X-Ray and follow up with surgeon.

12/19/05-1/06/06 15 days radiation to ribs only

12/19-12/23/05 Chemo #7 IE during radiation No WBC Booster/Neulasta The combination of chemo and radiation was extremely difficult. The chemo was given at the infusion center on one end of the 2-block long building and the radiology department was on the other end. B would have chemo in the morning and radiation was scheduled for 3:00. Some days, we had to wait a long time for radiation, which was very hard for Bradley. After chemo, he wanted to go straight home to lie down and there was no comfortable place for a sick person to wait in the radiology waiting room.

Radiation made him very tired and created sore, red areas on his chest. He slept a lot and wasn’t eating well, so he started losing weight. Our winter holidays were eerily quiet, and we worried about radiology being closed for two weekdays for Christmas and New Years Day. It had been impressed upon us that B absolutely had to be there every single day, but yet it was okay for him to have days off when THEY wanted a day off? We fretted about the weather and scoped out hotels near the hospital that we could stay at if the forecase were really terrible. It was during this time that his mother and step-father moved back to San Antonio.

12/27/05 Dr Sausville

1/06/06 Dr Sausville

1/09/06 On the original schedule, chemo #8 should have started today but was pushed back by the delays in WBC and RBC recovery. Dr S wanted B to be as recovered as possible before his upcoming move to San Antonio. He was originally scheduled to leave on 1/11, but that was delayed until we knew he wasn’t going to get #8 in before he left. There were visible nodules growing around the surgical site. Dr S said it could be keloids, which are common in African American men after surgery. Dr S pulled Brad aside for a private conversation and told him that, if Bradley were a 40-year old man, he would be telling him that if there was anything he wanted to do – i.e trip to Jamaica – he should do it now. The prognosis is not good. Brad didn’t have to ask what Bradley wanted as he’d made it clear he wanted to go to San Antonio to be with his girlfriend.

1/17/06 Bradley had an appointment with Dr S at 9:30 and flew out of BWI for San Antonio at 12:45. His mother and stepfather had moved into a house divided into apartments and arranged for him to rent one of them. Once Bradley was in Texas, he experienced repeated delays in treatment and continued to lose weight.

1/18/06 Texas onc.

1/20/06 Chemo #8 VC The doctor in Texas didn’t have him carry around fluids in a backpack like he did here, so he may have been under-hydrated.

2/04/06 Hospitalization for severe headaches. Bradley underwent not one, but two spinal taps to rule out meningitis. The first sample was deemed to be contaminated.

2/06/06 Should have been start of Chemo #9. Delayed due to hospitalization for headaches.

2/13-2/14/06 First 2 days of Chemo #9 IE (5 days total). Chemo stopped due to low counts and weight.

2/22-2/24/06 Last 3 days of Chemo #9 IE (5 days total) During this time, the TX onc called Dr Sausville and advised that Bradley should be returned to the larger hospital setting for tests to determine why he continued to lose weight and his counts were not recovering from chemo.

2/25-2/27/06 Eliz and Brad flew to San Antonio. After taking Bradley shopping for some things for his apartment, we met with the Texas onc. She told Bradley that as much as she loved him and having him as a patient, she was unable to manage his issues with weight loss and slow count recovery. She told him that he needed to go back to the Big Hospital for evaluation to see why he was having so many problems. She told us that she suspected his cancer has recurred. Bradley was having pain in his back that he didn’t think was because of the spinal taps.

2/28/06 Bradley returned to MD from San Antonio. His plans were to do whatever tests Dr S wanted and then return to San Antonio for further treatment.

3/03/06 Dr Sausville Dr S told us that the only curative option after the failure of standard treatment is a bone marrow transplant. However, that’s only an option if 1) the marrow is clear 2) weight and responsiveness to chemo improve and 3) a match can be found in the registry in time. As a mixed race child with no full blood sibling it was unlikely that a match could be found. Bradley’s back pain was getting worse and making it hard for him to get comfortable in any position. An MRI of his back and bone marrow biopsy were scheduled.

Excerpt from a post I made to ESARC list on this day:
"After looking at the CT and full body scans we brought from TX, and comparing the scans with those done before surgery, he sees what may be new cancer growth in the chest wall, thickening of the pleura and some abnormality in the lining of the lung wall. He explained that this would be a very big deal if in fact the tumor has not been held in check by the chemo and radiation, considering it's been such a short time since the end of radiation. It COULD be some other type of infection or another type of tumor. He wasn't so concerned about the lumps in the rib area, as african-americans (B is bi-racial) tend to get keloids in areas of radiation, but this complicates diagnosis. The plan is to 1) do a PET scan to measure metabolic activity of the abnormal area 2) get another biopsy, this one in an area that was NOT in the field of radiation as the one in TX was. He said radiation causes fibrosis/keloids therefore the choice of the site for TX biopsy wasn't the best. 3) do a bone marrow test to see if he's a good candidate for BMT. He gave a pretty dismal outlook, to be honest: BMT is the best "curative" option, but for Ewings, even that isn't proven. He mentioned Phase 1 and 2 trials and research of other treatments for recurrence, but came right out and said they would be palliative, not curative, and that this probably wasn't what we would want for a 19-year old. To top it all off, B said he would want the BMT done in TX. He did have some kind of meeting with BMT people in TX, but we don't know what he was told. He's taking a lot of pain meds, sometimes has trouble remembering common words, so we can't trust his ability to make decisions. In his mind, he only came back here to get the diagnosis clarified. So we're faced with the choice of refusing to send him back ... or accepting his choice, going back with him to see his place properly cleaned and set up and travelling back and forth ourselves. And if he's so determined to be in TX, what point is there in researching clinical trials outside of both MD and TX? His father is devastated ....For now, we wait for the PET. Who knows, it could be something else! And, of course his counts are low, so there will be transfusion on Tuesday."

3/07/06 MRI of back showed that the cancer had spread to his spine. He was therefore not eligible for BMT and wasn’t strong enough to start a new regimen. Today, for the first time in a while, Bradley ate well, was up and around, and sociable. He ordered two entrees from Macaroni Grill and ate part of both of them.

3/08/06 Bradley’s grandmother visited, but he was very tired and only came downstairs for a few minutes.

3/09/06 This was a quiet day. Bradley slept a lot.

3/10/06 Brad went to Bradley’s room to wake him up and get him ready for the bone marrow test. Bradley was in bed, panting for breath. He could talk, but swayed when he stood up. He had a fever. We called Dr S and took him directly to the UMMS Emergency Room. After a long wait, a nurse saw him lying on a bench in the waiting room, lips and fingertips blue, and rushed us inside. They quickly determined that his blood oxygen level was very low. They weren’t able to bring it up using a mask, which Bradley had trouble keeping on because of coughing. He was given a sedative and put on a ventilator with the tube going down his throat. An X-Ray showed his right lung (the “good” lung) was full of fluid.

Brad asked the oncologist who saw B in the ER if this was going to kill him. The doc didn’t want to give a direct answer, but Brad persisted, asking if it was time to call out-of-town relatives to come see him. Then the doc replied that yes, those calls should be made as it was likely that B would die. I spent the next hour in the emergency room parking lot making calls, trying to answer people's questions as to what they should do, not wanting to hear "is it time?" but telling people that yes, it might be time.

There weren’t any beds available in the adult ICU, so he was admitted to the Pediatric ICU. The staff there was amazing - kind, thorough, extremely attentive to Bradley's every need and attuned to our needs as parents as well. They determined that B had a bacterial infection, but they couldn't pinpoint what kind. The head of the pediatric ICU interviewed us at length as to what he’d been exposed to recently to help them figure out what type of antibiotic would work best. In Texas he used public transportation and lived in an old rental unit (with a puppy in the unit next door), any one of which could have been sources of contact with infection-causing microorganisms. The range of infections that he could have been exposed to was too big.

At one point late at night, he woke up and struggled to pull the tube out of his throat. The entire available staff of the PICU gathered around to help monitor his vitals, administer meds (including a nicotine patch, once they realized he smoked) and do their best to calm his agitation. After that, the decision was made to move him to an adult floor as soon as possible, as the pediatrics staff wasn’t accustomed to dealing with patients with his strength and the dosages of the meds that he needed.

3/11-3/14/06 Surgical ICU In the middle of the night, he was moved to the Surgical ICU. PET/CT scans Bone marrow biopsy

3/14-3/21/06 Moved to the Medical ICU In both the Surgical and Medical ICU's, Brad tried to be at the hospital for every nursing shift change to make sure the new nurse knew that we wanted Bradley's pain alleviated and what the dosages and timeframes were. B was no longer verbally responsive, but became extremely agitated as each dose of med wore off. One nurse had notions of weaning him down, regardless of the fact that he wasn't expected to live more than another week, so he was coming conscious every 2-4 hours, coming up swinging and it would take 4 people to hold down his 6 ft 120 lb body until pain meds took effect. Brad and B's mother made sure that nurse was never assigned to him again.

3/16/06 Results of biopsy and scans showed that the cancer was in his marrow, and at the original site as well as his spine.

3/17/06 From ESARC post: "Yesterday morning we were called into a family conference at the Medical ICU with Bradley's team of doctors. The cancer has spread, which would have started during chemo and radiation. It is in his bone marrow and at the original site. In order to be eligible for bone marrow transplant he would have to have been responding to chemo. They will do their best to manage his pain. In the next couple of days they will remove the ventilator tube and see if he can breath on his own. If he cannot breath on his own or if his heart stops they will not rescuscitate."

3/21/06 Bradley slips away from this world.

Blogging B's Story

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

Friday, September 7, 2007

Chronology of Bradley's Treatment, Part 4

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

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

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

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

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

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

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

Chemo #5 IE

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

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

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

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

Chronology of Bradley's Treatment, Part 3

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.

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.

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.

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.

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.

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.

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.

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

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

Chemo #3 VDI

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

Chemo #4 VDI

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.

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

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

Side Effect Management

Protect bladder

Protect/heal stomach and esophagus

Protect heart

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!

Naproxen sodium (RX-strength NSAID)

Pain management
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).

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

To treat Infection

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.

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


To flush mediport

Help skin heal during radiation

Chronology of Bradley's Treatment, Part 1


It all started in late May, 2005. Bradley was living with us in Columbia, Maryland, situated in between Baltimore and Washington, DC. He'd lived with us since middle school and was set to graduate from high school in June. B's post-graduation plan was to move to San Antonio, Texas, where his mom lived. He'd work for a year, then go to college or tech school. In May, B went to visit TX to prepare for the upcoming move. Once there, he started having sharp pains in the area of his right ribcage and a lump had formed on his chest. He chalked it up to a Lacrosse injury. He'd been hit hard in practice sometime in April. The pain increased over the course of three nights. One night, his mom found him lying on the floor. She asked why, and he said it was because he thought the hard surface would ease the pain. The next day, they went to the emergency room of Northeast Baptist Hospital where they did a chest X-ray. It showed a large mass in his lungs, so he was admitted for further tests. At first, they suspected tuberculosis (imagine, we thought that was terrible!). He was put in a private room and anyone going near him had to wear a face mask. He said it was really weird being treated like a contagious person. After TB was ruled out, he had a CT of his chest.

5/27/05 Test Results
CT Angio of the chest with and without contrast
The sizes of masses recorded in the report:
Large tissue mass adjacent to rib #6 that showed destructive changes 10.5 x 5.5 x 9.4 cm. A tumor over 8 cm is considered unfavorable for prognosis.
Extrapleural mass in the posterior left hemothorax near the apex 3.2 x 4.2 cm
Plural-based masses 1.7 x 2.4 cm, 2.2 x 3.1 cm, 2.2 x 1.2 cm and 2.8 x 3.6 cm
Left hemidiaphram 2.2 x 1.7 and 4.7 x 4.6

Bradley was given vicodin for pain relief. His only symptom at this point was chest pain. The primary mass on his ribcage was easily visible on his side.

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

Final pathology from biopsy is completed. The biopsy found he had Ewing’s Sarcoma/primitive neuroectodermal tumor (ES/PNET). Ewing’s tumors of the chest wall are also referred to as Askin tumors. Genetic testing was also done to confirm the existence of “chromosomal translocations” associated with Ewing’s Sarcoma. The local oncologist contacted Dr Benjamin of MD Anderson in Houston and he provided the standard protocol COG-AEWS0031.

Elizabeth and Brad’s first trip to San Antonio. Thinking that Bradley was a Texas resident, the local oncologist recommended that Bradley be treated at MD Anderson in Houston. Treatment in Houston wasn't realistic for us due to the distance from both of B's parents.

We met with B's local oncologist, who explained that this cancer is so rare it requires more expertise than most local cancer centers can deliver. She was going to start his first round of chemo, following the standard protocol, but recommended we look into a long-term solution.

It seemed like a cut & dried decision, to transfer his care closer to home. However, the situation was very tense, made more difficult by the fact that B's friends from Maryland would begin arriving within a couple of months. He looked forward to a year of parties and special time with his girlfriend, along with getting some work experience. Seems like a lot of young adults were drawn to the San Antonio area - cheaper (shared) housing and availability of entry level jobs. B's mom had been looking forward to spending time with him again. So B wanted to proceed with his move to TX, fly to MD for chemo, then fly back to TX for the 2 weeks in between rounds. Of course, I was worried about the cost, but that turned out to be the least of our worried. It didn't take long for us to be reminded, in more elegant terms, that airplanes are big germ boxes. B couldn't risk all that air travel. Fortunately, he understood and agreed.

Due to the aggressive nature of the cancer, chemo would begin immediately, administered by the diagnosing, local onc. She explained that B's immune system was going to take a clobbering and he would be "immuno-compromised" for at least one out of every 3 weeks for the duration of his treatments, about a year, and beyond. Even a common infection could be fatal to him. She advised us that he had to avoid crowds as much as possible, especially in enclosed areas.

We weren't going to be able to provide the level of support B was going to need long-distance, so we started looking into the major cancer centers in Baltimore, looking to get him back home after all the initial tests were done. There would be a lot of tests, a lot of driving around to different doctor offices around San Antonio. If there was a cancer center in the area, we didn't know about it and didn't know to ask about it. We were all in shock, scared and struggling to manage day-to-day tasks as we came to terms with the enormity of the situation.

MRI Cervical spine without contrast
MRI Thoracic spine without contrast
MRI Lumbosacral spine without contrast
MRI Pelvis without contrast

Surgery to put in a Mediport implant for chemo. The port is used to delivery chemo and fluids as well as to draw blood for tests. This saves him a lot of pricks and pokes along the way.

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

Glucose 83, BUN 9, Creatinine 0.8, Sodium 139, Potassium 4, Chloride 100, Co2 24, Calcium 9.4, Total protein 6.9, Albumin 3.9, AST 25, ALT 15, Alkaline phosphate 152 (normal is 30-100), Bilirubin 0.8, White count 4.5, Hemoglobin 15.4, Hematocrit 44.8, Normal MCV 87.3, Platelets 228,000

We returned to MD with plans to return to TX for B's first round of chemo. During our week at home, we made our best effort to arrange for care. On advise from our primary care doctor, we scheduled an appointment with a local oncology group for 6/28 (this date comes up again). On advise from family, we “let the doctors talk to each other” and move us up the chain to the next level of care. We met with a representative from our company’s employee assistance program (Brad and I work for the same company). She offered suggestions, helped us organize our questions for the doctors and worked with us to identify the things we should do right away. That included having physicals ourselves, meeting with our managers and HR to work out flexible schedules and set expectations. We got a list of cancer-related support groups in our area, but none was appropriate for our situation.

6/13 – 6/21/05
Eliz and Brad second trip to San Antonio for chemo week #1

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