Surgery Day

We all woke up around 7:30, but we did not arrive at the hospital until 9:30. Once again, we had gotten a worried call from Mom because she was told that surgery had been moved up to 11:00 am. Elliot stayed at Jeremy's with Micah, and we took the baby to the hospital with us. Suzette and Joel had offered to come up in the morning to help watch the baby while we sat with my mom. We met with Dr. Olivi again, and then we started the wait for the surgery.

Because my mom's surgery was scheduled after another surgery, they could not give us an exact start time. I think the waiting and worrying is the hardest. Around 12:00, they came by to tell us the first surgery was complete and it would be less than an hour before they took my mom back. We met with the anesthesiologist, and an army of doctors and nurses. My mom talked about her poor reactions to anesthesia, and they developed a plan of action to try and keep her from vomiting post-surgery.

Unfortunately, it was nearly 2:00 before they finally came to take my mom back. We kissed her and wished her good luck. She was in good spirits, but definitely worried. By that time, we had a small army of visitors - Diane and Joey, Sheila and Les, and Suzette and Joel. They spent the day chasing my children around while I...to be honest, I'm not sure what I did. I think I fielded phone calls, and talked to doctors, and worried. I do think, however, the Micah had a wonderful day - he played with toys, and he had a whole lot of attention showered on him. At 3:00, we were informed that they were just starting the surgery. At 4:50, we were told they were finished resecting the tumor, but had to close Mom up. Shortly thereafter, Dr. Olivi came down to talk to us.

The news was not good - he said the tumor was malignant, aggressive and pervasive. Apparently, it had invaded the entire right hemisphere of her brain. He felt he was able to resect about 40-50% of the tumor, and he felt we had a good chance that my mom's function would return to her pre-surgical state. Because they were unable to resect more tumor, they did not implant the chemo wafers in her brain. We talked about her survival, and he said that the average time for this type of tumor was a year, but because of the aggressive nature of her tumor, he felt we would be on the shorter side of that. Dr. Olivi also said he would stick around to see my mother wake up so he could check her neurological function and he would talk to us again later.

It was a long wait, but we finally got back to see Mom around 6 or so. She was awake and talking, and we felt good about things. We said good night, and we all decided to head home. Erik and Jack were waiting for us downstairs with the rest of our family friends. Suzette and Joel offered to drive my father back home (since his car was still at Suburban Hospital), and Elliot and I decided to head back to Bethesda with the kids.

Relocation to Hopkins

Another long day...I think there will be a lot of these from here on out. With the news that my mom was sick, our phones were ringing off the hook (and emails lighting up) with offers to help...food, babysitting, visits to the hospital - everything. That is one thing I am amazed by - the volume of support we are receiving, so thank you to everyone.

Once again, we had our babysitter, Christin, arrive at 9:00 to take care of Micah. I had arranged for my mom's friend Sheila to come help me out at the hospital that morning (she asked what I needed, and I said babysitting!), but knew I couldn't get there until close to 10:00 because we had an initial intake evaluation for Maya for the Maryland Infant and Toddler's Program. I suggested that Sheila go over a bit early and visit with my mom, and promised to be there as quickly as I could. During the intake meeting, Dr. Powers called, and he said he had gotten through to Dr. Brem at Hopkins and my mom had been accepted into their program. He expected her to be transferred to Hopkins later in the afternoon.

Around 9:45, my mom called me in a panic - she said they were coming to transfer her, and she was afraid they were taking her and none of us were there. I asked her if she had seen Sheila yet, and she replied that she had not. I called Sheila (who thought my mom had been sleeping) and she quickly went into my mom's room to sit with her. I did my best to wrap up the intake meeting quickly and head to the hospital.

When I arrived, Sheila came out to watch the baby. My father and brother arrived shortly thereafter, and we all waited together for the transport to Hopkins. I think it was 12 or 1 before they finally showed up. My Dad decided to head up to Baltimore with my mom in the transport, and my brother and I followed behind. We decided that we would stay in Baltimore at Jeremy's house for the evening so we could get back to Hopkins with little effort in the morning. After the transport took our parents, Jeremy went back to my parents' house to get clothing and medicine for my father and to pick up his dog. I went home to spend some time with Micah and get my things together, too.

Elliot and I decided that we would pack up the kids and we would all go to Hopkins together. It was nearly 3:30 when we left, and finding the Meyer building at Hopkins was quite the challenge. When we arrived, we learned very quickly that Hopkins is not exactly child-friendly. Elliot had to sit down in the lobby with the kids while we were upstairs - it wasn't exactly a comfortable environment. Luckily, Elliot remember the DVD player with several episodes of Sesame Street to keep Micah entertained. We traded back and forth with the kids and took turns up in the room with my mom.

We were joined at the hospital by my mom's friends Diane and Joey. We were able to speak to the surgical resident and the chief resident of the neuro critical care unit. Dr. Brem, the neurosurgeon, also came by to meet with us, and explained that he would be unable to perform the surgery because he was leaving town. He recommended that Dr. Olivi, his 2nd in command and the head of the brain tumor program, take over the case. Dr. Olivi came in to meet with us, and he went over the information with us. We talked about surgery, and my mother was able to express her wish that while she wanted to live and she wanted to fight this tumor, she also wanted to come out of surgery a whole person - herself. She explained that she wanted both quality and quantity of time, and she was afraid of coming out of the surgery...not herself.

Dr. Olivi was very understanding, and he promised that he would do everything he could to respect her wishes. We were told surgery would be in the afternoon. Shortly thereafter, we said good night to my mother and we headed to Jeremy's house for the evening. Elliot and I went home first with the kids - it was nearly 10:00 when we got there and put them to bed. My father and Jeremy stayed until my mom returned from her MRI.

Since the girls and Jen were at the beach, Micah slept in Paige's room, and I put Maya in her car seat in Peyton's room. When my father and Jeremy arrived home, my dad took over Jeremy's bed, Elliot took the couch, and I decided to sleep in Peyton's bed in the room with Maya.

Happy Birthday to Me

August 23...my birthday. Forever the day I will remember as the day I learned my mother had cancer. Once again, it was a long torturous day. My mother was sent in for more testing, and we spent all day waiting to talk to a doctor. I got a call from my friend Jen around 8:00 am with the recommendation from her neurosurgeons - skip the de-bulking surgery and go straight to radiation. I was devastated by that news - it sounded to me like they were saying my mother had no time left.

My brother had spent the night at my parents' house with my father, and the two of them had arrived bright and early at the hospital at 6:00 am, hoping to catch Dr. Powers first thing in the morning while on rounds. Jeremy had run home the night before to put his daughters to bed before they left for vacation. He also canceled his trip to California and had packed all of his stuff so he could spend the week down in Rockville with us while they were out of town.

We were told Dr. Powers would be in around 9:30 or 10:00, so I raced over in the morning with the baby while our babysitter, Christin, took care of Micah, and Elliot took care of Maya. Around 11:30 or so, Elliot walked over to the hospital with the baby so I could nurse her again. He was only able to stay a short while because our babysitter had to leave at 1:00, so Elliot raced home to be with Micah and I kept Maya at the hospital. Our babysitter's younger sister, Mackenzie, came to the hospital to sit with Maya while we continued to wait for the doctor. Over the course of the day, the Niedelmans and the Kayes stopped by again to visit (and found themselves on baby duty).

It was nearly 6:00 pm when Dr. Powers finally came in to speak to us. He very carefully informed us that my mom had a substantial tumor, likely cancerous. He talked about the different options, and suggested that debulking surgery would buy us some time. At that point, he suggested that we transfer her to Hopkins for the surgery. As he explained it, the surgeon was merely the "technician" in this circumstance...what mattered was the protocol, and the surgeons at Hopkins worked in tandem with the neuro-oncology team, and would understand how best to surgically lay the foundation for the oncologists to execute their job. He suggested we see a Dr. Brem who would work closely with Dr. Grossman, the oncologist. He set in motion the transfer to Hopkins, and back to waiting we went.

In honor of my birthday, Elliot had baked me a cake. We asked the nurse if we could put my mom in a chair and have her sit in the ICU waiting area with us so we could have dinner together, cake, and time with the grandchildren. Our WONDERFUL nurse arranged the entire evening! We ate some food from Panera, chocolate cake for dessert, and my mom was able to hold the kids on her lap and sit with us.

Amazingly through all of this, my mom was more herself than she had been in months. She was chatty, smiling, and her sense of humor was back. It was good to see my mom again, and despite the bad news of the day, it was a good birthday.

The "C" Word

It was a long day. We got a call around 8:00 am asking my father to come by to sign off on some consents, so he left my house and went to the hospital early. I decided to wait a bit at home, and asked my father to call when the doctor arrived. Jeremy arrived at the hospital as early as he could get there - Jen and the girls were headed off on vacation, and Jeremy was due to leave for a trip to California, so he had planned to bring his dog down to leave at my parents' house while he was away. He stopped there first to leave the dog and pick up some clothing and medicine for Dad.

I arrived at the hospital around 9:30. We were initially told that Dr. Slotkin would be by to talk to us. We spent all day waiting - waiting for tests, waiting for doctors - just waiting. My mom was in the ICU, and no children were allowed there. Luckily, there was an ICU waiting room on the floor, and we were able to keep the baby there all day. Elliot came and went a few times with Micah, my friends Heather and Laurie came by for a few hours each to sit with the baby, and my parents' friends Gail and Steven and Suellen and Greg and Arleen and Lorin came by to sit with us. After a long day, no doctors showed up at all. Instead, we were told that Dr. Powers would be by in the morning to talk to us.

As the day progressed, I grew impatient. As is typical of me, I wanted information, and quickly, so I called my friend, Dr. Jennifer Berkeley, who is a neurologist. She trained at Hopkins and currently working at Sinai in Baltimore, and she was able to come by the hospital. We gave her permission to review mom's records, and she informed us that my mother's tumor was the worst possible tumor - likely a glioblastoma. She told us that the neurosurgeon would likely recommend de-bulking surgery to reduce the tumor, followed by radiation and chemo. She asked for permission to bring a copy of the scans to work in the morning and get a second opinion from her neurosurgery colleagues. She said that there was always a chance that the tumor would appear to be a glioblastoma, but could always be something more treatable, like Lymphoma CNS.

Needless to say, we were devastated, although we continued to hope that Dr. Powers would bring us other news in the morning.

Scary times

Today (well, Saturday) I called to check on my mom around 5:00 pm. My father answered the phone, and immediately I could tell something was wrong. Initially, my father insisted everything was fine, and handed the phone to my mother. I asked her how she was and why Dad sounded so off, and she informed me that she kept falling and cracking her head. Actually, she informed me with...irritation in her voice...that Dad kept "dropping" her and he gave her several large goose eggs on her head, and that he was annoyed because he couldn't go run any errands because he was worried she would hurt herself.

I offered to go over with the baby and sit with mom while my father ran out. I arrived around 4:45, and went upstairs to the bedroom to hang out with her. Shortly after I arrived, my mom needed to go to the bathroom, so I helped her up. I was amazed by how much she had deteriorated over the prior few days - she could barely stand and walk, and couldn't get to and from the bathroom (or balance on the toilet) without significant assistance. She kept leaning towards the left when she walked, and the way she moved her left arm looked...wrong. It was as if she kept missing her mark with her left arm. I was very worried that she wouldn't be able to safely stay at home before her neurology appointment on Thursday.

I spent the next few hours trying to convince my mother that she should go to the hospital. I called a friend of mine who is a neurologist and asked whether we should go to the ER, and she suggested that an earlier workup wouldn't hurt. Our friend Arleen stopped by to see the baby around 7:30 or 8, and together we convinced her that a trip to Suburban Hospital was the best option - to get a full workup and have all of the scans run before her appointment later in the week.

It took us about 1 1/2 hours to get her dressed and out to the car. Poor Maya - she was so upset and shrieking and screaming in her car seat while we took care of my mother. We arrived at the hospital around 10 and the ER staff would not allow me to bring the baby back. Luckily, my house was minutes away, so I ran home, nursed the baby, and left her with Elliot. I hoped that she would fall asleep and make it through the night (since she is unable to drink from a bottle).

They did a quick evaluation and ordered a CT scan to see if any of the falls had caused injury. Around 1:00 am, they came in to tell us that the CT scan showed swelling on the brain, indicative of a tumor. We were told we would meet with a neurosurgeon, and we specifically requested Dr. Powers.

Shortly thereafter, Keith, the PA for Dr. Powers, came by to do an evaluation. He explained that my mother had a tumor in her brain and the pressure and swelling had caused my mom to lose the vision in the left half of each of her eyes - a condition called hemianopsia. He said that, and the weakness on the left side of her body, likely caused my mom's balance issues. At that time, he indicated that the tumor could likely be malignant.

He put in orders for a CT scan with contrast to delineate the tumor and an MRI with contrast for the morning. I ran home at 3:00 am to get some food for all of us, and returned around 3:30. I met my mom and dad in my mom's ICU room, and my father and I stayed until 4:15 am. Because of the late hour, I brought my Dad home with me, and he spent the night on our couch.