The communicator called to let us know that at 11:11 a.m., they made the incision. She left us at 6:45 so it was nearly 4.5 hours of prepping before cutting. This involved another MRI, sedation, stablizing her head, prepping the area, and getting her comfortable. From what we understand, it will take 1.5 hours to do the mapping of brain functions.
After over three hours of waiting, the nurse came to find us. Elizabeth is comfortable and asleep. They have put the bars in her forehead and back of her head to stablize her head. She has also had an MRI. As soon as they make the incision, the communicator (our special nurse who keeps us in the loop) will let us know. It will be quite awhile before they are in her brain and mapping brain activity. We have had no word other than that. They moved us earlier to a different part of the hospital. We are in the neurology ICU with much fewer people and a nicer waiting room. Brian and I finally felt like we could leave to get breakfast. I didn't anticipate feeling so anxious, but I have been with her non-stop since we went to get her in Denmark. As she walked away with the attendant this morning, I felt like the first time I left her at school or at camp. All I could say was, "Be good and have fun!" Nothing like seeing your child turn and smile at you as she walks off to surgery even if it is the "ohhhhhhhhh, Mom" look. Fortunately, our daughter has an amazing sense of humor. We arrived by 5:20 this morning, walking the few blocks from our hotel. As she held the gown in front of her, she couldn't help but giggle. She could have wrapped it around her three times. Her attending doctor is an attractive young man - Dr. Shepherd! Yes, Grey's Anatomy fans, Dr. Shepherd. He wrote her surgeon's initials on her left temple. Again, a few giggles. We said good bye a little bit ago and will be kept updated through a message board and phone calls. They said to count on ten hours. Here we go, friends. Mahatma Ghandi philosophized, “Each one has to find his peace from within. And peace to be real must be unaffected by outside circumstances." Tonight at dinner, Elizabeth asked us, "I know I'm supposed to be scared, but is it bad if I'm not?" All Brian and I could do was smile in awe at how mature and centered she is for a 21-year-old facing major brain surgery. This inner peace, we believe, comes from a variety of places.
First of all, this peace comes from our family's disposition, one that tends to tip the optimism scale. We do our fair share of worrying, but we also believe in taking positive action when we have that capability. Helping Elizabeth find the best healthcare provider was one way we could have a positive impact on the outcome of this situation. We continue to believe that while this tumor may return, we are doing exactly as we need to do get the problem under control. Secondly, we are surrounded by an amazing support group. Our family and friends have been a constant reminder that so many people care for us. We are fortunate to belong to a variety of communities (church, town, work, school, sororities, etc.) that connect us with multiple generations of people in all parts of the world. Knowing that so many people are praying, meditating, sending us positive energy, and taking care of our obligations while we are away, we have been able to focus all of our energy on caring for Elizabeth. That support group has provided all four of us with an amazing peace that I didn't know existed. It is a feeling I want to explore more deeply once this part of our journey is behind us; it is a feeling of inner peace onto which I want to hang. Finally, every step of the way, Elizabeth has been surrounded by the best health care professionals in the world. From the doctors in Denmark to the doctors here at the Mayo Clinic, she has been taken care of by compassionate, intelligent, articulate, and confident people. Today was exhausting, as Elizabeth had another MRI first thing in the morning, followed by a meeting with the surgeon later in the afternoon and a PET scan for the clinical study. The meeting with her surgeon was the pivotal moment that truly filled us all with peace to which Ghandi refers. Despite the outside circumstance of a brain tumor, we are at peace that all will be well. Elizabeth's surgeon spent a long time with us reviewing the functional MRI and reiterating the options as well as the pros and cons of each option. We could do nothing, allowing the tumor to continue to grow before addressing the problem. We could do a biopsy, hoping to get enough of a sample to give us a good picture. We could be aggressive and attack the tumor with surgery. We chose the latter. WARNING: REST OF THIS POST DESCRIBES THE SURGERY! Elizabeth's surgeon walked her through each step of the surgery. He began by describing the entire team of professionals that will be buzzing throughout the room, mentioning that it might be a bit overwhelming with all of the activity. He reminded her, though, that he was in charge, saying, "There will be a lot of people in the room, but I am the captain. I am the one with the SHARP instruments." She will have to lie on her back for the surgery with her head turned to the right, allowing her left side to be exposed. Once they have her head in the position they want it, they will place two rods through the skin on her forehead, touching against her skull. Two other rods will be placed on the back of her head. This will keep her from moving her head during the surgery. Fortunately, they will give her a sedative that will help her relax, and they will also numb her entire scalp. Once she is numb and sedated, but not asleep, they will cut her scalp with a question mark incision starting in front of her ear, moving atop the ear, and up across the left side of her scalp, ending at her hairline. He assured her he will only clip her hair where he will make the incision. Once the scalp has been pulled back, he will cut the bone of her skull, removing a rather large circle using a high powered drill. Finally, he will cut through the thick membrane beneath the skull to expose her brain. Each step along the way will involve more numbing so that her entire head is numb. Before actually removing the tumor, he will spend an hour or so mapping her brain activity showing her a slide show that requires her to identify pictures while he is probing parts of her brain using an electric stimulator. His goal is to ensure that when he begins to remove the tumor that he doesn't damage her ability to speak or understand language. At least twice throughout the surgery there will be MRIs conducted in this special operating room. After completing the mapping, they will use the functional MRI and the PET scan as a GPS of sorts as he navigates through her brain, cutting away the tumor from the healthy brain tissue. Once they believe they have as much as they can, they will have a final MRI. If the MRI doesn't reveal any of the tumor, they will close her up (putting the bone back and using plates and titanium screws to hold things in place). If the MRI shows more of the tumor they can get, they will continue with the extraction. The entire process is remarkable. If all goes well, she will spend the night in the ICU, move to a regular room on Saturday, and be discharged on Sunday. We will bring her back here to the hotel room for several days before we are allowed to bring her home. Our positive thinking, our support group, and our amazing healthcare providers have given us peace. May we each find that peace within. Several of you have asked about the clinical trial in which Elizabeth said she would participate, so I thought I would provide a few more details. According to the study coordinator, research on brain tumors is way behind that performed on breast and prostrate cancers. This particular trial is a continuation of a previous study that involved twenty-five patients with brain tumors: both those who required just surgery and those who required chemotherapy and radiation. Phase two of "Evaluating the Impact of 18F-DOPA-PET on Neurosurgical Planning for Gliomas" divides the study into two different studies. Elizabeth will be the third patient to participate in the study focused on surgical removal of the tumor. Tomorrow, she will be injected with a radioactive tracer (don't worry- we have been promised there is less radioactivity than a chest x-ray) that will provide a better picture of brain for the surgeon. Most brain surgeries are guided by the MRI (magnetic Resonance Imaging) scan. The PET (Positron Emission Tomography), however, can give the surgeon a better image of the tumor, and help him/her distinguish between the tumor and healthy brain tissue. Ultimately, it provides a clearer image of the edges of the tumor. A grant from the National Institute of Health underwrites this research at the Mayo Clinic.
Each of us, whether individually, a family member, or a friend, has been impacted by a serious health issue. Many face health issues that a decade ago would have been fatal or life shortening. Science, however, continues to improve the diagnosis and treatment. These benefits come through research like the study described above, and Elizabeth did not hesitate when asked. In fact, with her psychology background, she was intrigued by what the PET scan would show. If you would like to read about the study, check out the Mayo Clinic description. After ten days of trying to maintain a normal life, the initial phase of waiting is over. However, we have replaced it with a different kind of waiting. Can you hear a sense of impatience? For those of you who know the Schilling women, you will know that this impatience is quite in character. We are, though, slowly learning this virtue.
Since arriving home after our whirlwind excursion across the ocean and across the frozen landscape of Minnesota, we have tried to be as normal as possible, even as the reality of the situation settled in. Lucas had several ball games as did the Manchester Univesity Spartans. Our family, slightly obsessed with sports, finds great enjoyment in basketball games, and these teams did not disappoint us. We also have been blessed by visits from friends and family, each offering us comfort through their laughter, warm hugs, and delicious food. Yesterday, Brian, Elizabeth, and I drove back to Rochester, Minnesota. The sun was shining and the roads were completely clear. With few delays, we arrived easily and spent the evening watching the Olympics in our hotel room. An early appointment meant that we had to arrive at the Mayo Clinic by 7:30 this morning. For nearly 2 and a half hours, Elizabeth participated in her functional MRI. The functional MRI will provide her surgeon with important information about which parts of her brain control partical tasks. As a psychology minor, she found this "test" quite interesting. Lying perfectly still, she had to respond to images that required her to identify differences in patterns as well as rhyming and correlations between words. Ironically, the one she remembers clearly is the phrase "country: Denmark." She quickly pressed the button to indicate they are correlated. Brian wonders if the MRI screen didn't jump a bit when her brain lit up with an emotional response to Denmark. Of course, those several hours seemed to last a lifetime for us waiting to hear about her experience. Perhaps it is training for the nearly ten hours we will have to wait on Friday as they operate. This afternoon, we meet with the coordinator of the clinical study in which she is participating. Until then, we are hanging out in the little metropolis of Mayo, browsing in the little stores, enjoying a cup of coffee, and tapping into free wifi. Yes, we are waiting, but we also are realizing that a lot of good comes to those who wait, and the best part of this waiting are the conversations we have had as a family. Thanks for waiting with us. Lewis Carroll wrote in Alice in Wonderland, "I can't go back to yesterday because I was a different person then." For us, this quote speaks volumes. We drove home today from Minnesota, a little disappointed we have to wait for surgery, but knowing that waiting for this surgeon in this special operating room is worth the wait. Life, though, has a funny way of teasing us with time. The past ten days have felt like an eternity or like time has been suspended. Logically, we know time has not stood still. Bills still need paid. Basketball games still must be watched. Dogs need fed. Elizabeth is no different today than she was two weeks ago as we planned for her semester abroad or three years ago when we took her to Denison University and drove away. She is a vibrant young woman with a great circle of friends and a sense of adventure that we know will take her far - even back to Copenhagen some day. The neurological surgeon in Denmark said, "Anne (he called her Anne for some reason) is the same today as she was when you put her on the plane." To an extent that is true, and yet, in many ways that is the farthest from the truth and much closer to Carroll's quote.
The realities of the tumor are beginning to settle in. Elizabeth has started to worry about how this tumor is going to interrupt her studies, and she is afraid of not graduating with her class. Lurking in the back of the mind is also the fear that the tumor may come back, and yet, realistically she knows she cannot live in fear because fear can be debilitating. Discovering the tumor has altered all of our views of living, and we are different. While there is no going back to erase the seizure that led to the diagnosis of a brain tumor, we need to realize that this has changed our family and the way we see each other. We are, as Carroll wrote, different people than we were before the tumor. For ten more days, we will try to fill time, hoping it goes much faster than the past ten days. Elizabeth is ready for the surgery, believing that her surgeon is going to remove most- if not all- of the tumor. We know time is going to stand still, and no matter how much we wish it to speed by, it will take its own sweet time. What we know for sure, though, is that we are different and there is no going back. Exhausted.
Exhausted but excited. Many of you who have experienced health issues or who have had family on a similar journey understand the mixed emotions of meeting with healthcare providers and the range of feelings when considering all of the options. Today was tiring because it started at 10:00 a.m. when we met with Elizabeth’s neurologist and didn’t end until 5:45 p.m. Ultimately, the information we received today was overwhelming, but we have a clear plan of action. During her morning appointment, the neurologist asked Elizabeth to perform a variety of tasks to check her neurological functions such as walking toe to heel on a straight line. Then we turned to the MRI pictures, and he talked about some of the options. He surprised us, though, by telling us he was switching surgeons on us. The newer surgeon specializes in gliomas, the term used for her tumor. Instead of an appointment tomorrow, he had scheduled her with a surgeon this afternoon. As the neurologist explained, the Mayo Clinic is an institution filled with specialists, and each of those specialists is highly trained in a specific field. Elizabeth’s new neurological surgeon happens to perform the type of surgery she requires more than anyone in the world. Yes, you read that right….the world. After lunch and a bit of down time, we made our way back across the street to see the neurological surgeon. Immediately, Elizabeth felt at ease as her the surgeon walked in the room. His excellent bedside manner and personality helped us connect with him, and as a result, we feel confident in his assessment. Furthermore, what her surgeon said was almost verbatim to what the neurological surgeon in Denmark had indicated. The consistency in their medical assessments allowed us all to breathe a little easier. About the size of a mandarin orange, her tumor has been growing for awhile. The surgeon was emphatic, though, that the migraines she has experienced since high school are in no way connected to her tumor. In fact, he said that unfortunately, even once the tumor is removed, she will probably still have the migraines. At this point, we believe her tumor, although rather large, is not cancerous. The neurologist had told us earlier in the day that her tumor is not curable, but it is treatable. As the day progressed, this made more sense, and the comment actually reflected what we had heard in Denmark. While they believe the tumor is only a stage II, it could be stage III (or more cancerous). They cannot know until they send the tumor to pathology. It is not curable, because there is no guarantee that the tumor will be completely gone or won’t grow back. However, at this point, no one has said to us that this is a life-ending tumor. If left unattended, it could become aggressive and shift to a stage III tumor. So what is our plan of action? We came to Minnesota prepared to stay. However, after talking with the surgeon, we will be coming home for ten days, and will return on February 11. On February 12, she will have a variety of tests, including a functional MRI which will identify which parts of her brain are controlling different actions. Her surgeon also wants to use the MRI to guide the operation sort of like a surgical GPS. This type of MRI is an intra-operative MRI, one that happens before, during, and after to make sure the brain stays stable. Because the tumor is in the left temporal lobe and is pushing against her brain stem, the tumor is in the area that controls speech. As a result, he wants to perform the operation while she is awake. I felt Elizabeth’s anxiety increase when he mentioned this form of operating, but he assured her that she would remember very little, and she would experience no pain during surgery. After cutting a large question mark incision starting in front of her left ear lobe following up over the ear and around the temporal lobe, he will take a part of her skull out, and then as he begins to remove the tumor, they will bring her out of sedation. Because she will be awake, he will be able to have her speak to him and even read or respond to pictures. Using this method of surgery, he will know if he is impairing her speech. Every step of the way, Elizabeth has come in contact with the kindest people. From the staff at DIS to the Danish healthcare personnel to the nurses and doctors at the Mayo Clinic, they have taken their time with her and have given her all the confidence in the world that she is truly in the best hands. Despite the risk involved, Elizabeth’s emphatic “let’s do this” was encouraging to her surgeon. Because he is going to use a special MRI with infrared cameras and will keep her awake for part of the 8-10 hour surgery, he must use a special operating room at St. Mary’s Hospital here in Rochester, MN. As a result, we will have to come back on February 11 for a February 14th surgery. HAPPY VALENTINE’S DAY, ELIZABETH! One of the biggest surprises we heard today was the fact that she would have surgery on Friday, and would possibly be discharged on Sunday. I am pretty sure I was in the hospital longer when I had each of my children! We will stay in Rochester for three or four more days when we will have a follow-up appointment with the doctors and to discuss the pathology report. Elizabeth will have titanium screws for the rest of her life, and once she is out of the woods and free from having an MRI every few months, she will have to have annual MRIs to make sure subsequent tumors do not surface. So, for now, we wait. I cannot imagine the next two weeks will go any slower than the past week has gone. Brian and I will head back to work, and Elizabeth will have a few weeks to catch up with friends. In fact, she is even planning a trip to the Delta Gamma house at Denison University to participate in bid day. While we know she will have four to six weeks of recovery, we are all breathing a little sigh of relief knowing we have a clear plan of action, and even more importantly, a plan of action being guided by one of the best surgeons for whom we could have asked. This morning, a kindred spirit of mine texted me a quote by Rilke that speaks volumes. “Believe in a love that is being stored up in you like an inheritance, and have faith that in this love there is a strength and a blessing so large that you can travel as far as you wish without having to step outside of it.” Hang on to that thought. It works! After taking two days to make arrangements and recover from a whirlwind trip overseas, Brian, Elizabeth, and I left North Manchester yesterday at 7:00 a.m. and arrived at 5:00 p.m. in Rochester, MN. The way that wind was blowing Sunday night, I was afraid we would have great difficulty getting far. Surprisingly, for most of the trip, the pavement was clear. It was almost as though someone had cleared the way. We spent last night in our hotel just chilling. Brian and I found ourselves in the hotel restaurant for dinner without Elizabeth. Apparently, the Duke-Pittsburgh tip off was much more pressing than dinner with her parents We are not sure when this addiction to basketball started, but she is almost as bad as Brian’s mom!
The highlight of the day came when our sweet neighbor children FaceTimed Elizabeth. At one point, Briggs said to Elizabeth, “Can I see your owie?” When Elizabeth pointed to her head and said it was inside, Briggs exclaimed, “Oh, my gosh. That’s going to be so hard to get out. Do you know how hard he is going to have to pull?” As his mom tried to hush him and apologize to Elizabeth, we laughed and continued to for rest of the evening. In fact, we have laughed off and on about his innocence all day. Laughter IS the best medicine! On Sunday, January 19, 2014, our daughter, Elizabeth, arrived in Copenhagen, Denmark. She was tired, but excited about what the semester abroad had in store. Within an hour of landing, however, she suffered a seizure that resulted in a ride in a Danish ambulance and a night in a regional hospital. Elizabeth does not recall much about the seizure and ride in the ambulance, but she remembers that first night in that hospital. Because it was a smaller hospital, she spent the night in an observation room in the emergency room. That means she shared a space with four grown men (old men, she says) separated by partitions. Fortunately, Mette, her Danish Institute for Study Abroad (DIS) residential assistant stayed with her until they turned down the lights for the night. Unfortunately, Elizabeth was kept awake by the nightmares of one patient and the incessant hacking of another.
I will never forget the moment Elizabeth called from the emergency room. She had her iPhone and was able to tap into their Wi-Fi and Facetime us. Her first statement was, "Mom, I'm in an emergency room." Apparently my response was one of disbelief because she proceeded to give us a "virtual tour" of the room. For the next twelve hours, Brian and I tried to think of reasons of what could have caused her seizure as she had not had one before. She had been treated for migraines, but we had no reason to connect the two. In fact, we weren't even sure she had had a real seizure. On Monday, January 20, before they would discharge her, the regional hospital ran a scan. It was at that point that concern was raised regarding the seizure and what could have caused it. A doctor told her that she was going to be transferred to another hospital, one with "head" doctors. At that point, DIS had provided her with a cell phone that allowed her to call home, text home, and stay in contact with DIS. The time difference made it more difficult for us to assess what was going on; furthermore, until Monday, we had not talked with a doctor or nurse. Finally, Elizabeth provided us with a number for the nurses' station, and we had better contact. In fact, before the MRI was ordered, Brian called the station, and asked if he could leave a message for the neurologist to call us. She said, "He is standing right here. Would you like to talk with him?" The neurologist told us that it might be a few days before the MRI could be ordered; the next day, however, Elizabeth called and said the neurologist had been in, told her he had talked to her dad, and while he was standing there saying it might be awhile before the MRI would be available, he received word that she would have the MRI within half an hour. Two hours later, Brian called the neurologist who confirmed that the spot on the scan was indeed a tumor, and the from there, we went into action mode. |
The SchillingsA family of four with a positive outlook on life even when life throws us curveballs. Archives
February 2016
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