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.
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.
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.