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.
Friday, September 7, 2007
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
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
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
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
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
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