On April 27, 2014, Elizabeth and her family will walk in a 5K in Chicago, Illinois. You CAN make a difference. Please click here to make a donation on behalf of Elizabeth.
One month ago this past Friday, Elizabeth had surgery at the Mayo Clinic in Rochester, Minnesota. We have been amazed at how quickly she has recovered. While she initially experienced some slowness with thinking of words, she has really regained 100% of her speech. Her biggest hold up right now is being tired, but because she is on medical leave from school, she has plenty of time to nap.
The first ten days at home were a bit scary. Elizabeth's pulse was high and she broke out in a rash. After a run to the emergency room (which was probably the most traumatic experience of the entire journey), we ruled out a blood clot and treated her for anxiety. Her family doctor has been extremely helpful as we worked to figure out if her symptoms were related to the surgery or the medicines. The symptoms have subsided, and she is on her way to full recovery.
Last week, we received the final pathology report, and the oncologist was quite pleased, indicating her tumor was indeed stage two and requires no follow up treatment such as radiation or chemo. We will return to the Mayo Clinic in late May/early June for a follow up with the surgeon. For rest of her life, Elizabeth will need an MRI every six months. We can handle that.
One of my colleagues in the Psychology Department invited Elizabeth to speak to the neuro psych class, and after talking for an hour, they invited her back the next day to answer questions. It was an excellent opportunity for her to talk about the tumor and the journey. She has realized, like the rest of her family, that she is remarkably lucky. So many people who are diagnosed with a brain tumor do not have this positive news.
Right now, our family is working to raise money for the American Brain Tumor Association. On April 18, we are holding a garage sale and then on April 19, we are hosting a breakfast at the Main View in North Manchester. The owner will give us 10% of the proceeds plus tips towards our goal. On April 27, 2014, Elizabeth and I, along with family and friends, will participate in the 5K walk in Chicago for the American Brain Tumor Association, and all of the money we raise will be donated at this point.
Thank you for keeping us in your thoughts and prayers, and thank you for your patience as we have all moved back into a sense of normalcy. Elizabeth is going to take classes this summer, and she hopes to graduate with her classmates in May 2015. We could not have gone through this journey without you!
Kurt Vonnegut wrote in Timequake, “You were sick, but now you're well again, and there's work to do." In a sense, these words apply to our family, and yet, we know that Elizabeth has a lot of healing to do over the next several weeks. The first few days at home were ones of transition, a transition between being suspended in time and the realities of living: occupations, bills, children's sporting events, groceries, presentations, and other obligations of being an adult. For Elizabeth, her sole occupation at this point is to heal. While others at school are studying and worrying about next year's housing assignments, she has spent the past five days since returning home sleeping a lot. She has had visitors who have simply wanted to give her a hug, bring her a meal, or sit with her to keep her company. These elements of homecomings are blessings, allowing her to gently re-enter conversations and interactions.
As promised, Elizabeth was determined to attend basketball games this weekend, making it to her brother's two high school games and our local university game. Watching sporting events, especially basketball, have always been one of her favorite past times, and setting the goal of attending these goals served as an important benchmark. Friday night's game found us sitting next to the band, and magically, Brian pulled a pair of earplugs from his coat pocket. Each of these games allowed her a social outing that gave her a chance to enjoy a sporting event and begin talking with others. Friday night was exhausting. By the end of the game, she looked pale and her left eye was a little puffier than when we had left home. Saturday, however, was a different experience. She was able to sleep most of the morning, and after showering, it was difficult to tell she had ever had major brain surgery. Fortunately, as I mentioned, she has long hair, and the surgeon only shave a 1" portion along the question-mark shaped incision underneath the hair.
We continue to monitor her pain levels; interestingly, her pain has not been her head. Instead, she has complained of a sore neck and aching knees. Her ribs also hurt. Tylenol has helped alleviate the stiffness and aches, and we believe these are side-effects of lying on the couch and not moving a lot.
Yesterday, we ventured to church and had a visit from a dear high school friend who went on a walk with us to the post office. I will write later about the church service and the timeliness of the message and music. Each spoke of our experience of the past three weeks, deserving their own reflection.
Brian headed back to work last week, and I will venture to my university today. We have all looked forward to getting back to our careers, and the last few days have given us a chance to emotionally prepare for this. We DO have work to do, as do Elizabeth and Lucas. Three of us will find it easier to slip into a routine. Elizabeth will continue to heal and find ways to create her own routine. She has a mountain of thank you cards to write, but she will chip away at those slowly. For now, her best medicine is to be home, surrounded by a community that loves her and continues to hold her closely as she rests.
It is nearly 4:29 at home, and we are on the road. Our appointment with the neurologist this afternoon was a good one, visiting with a "pinch hitter" as Elizabeth's is doing outreach work in Ethiopia. The entire pathology report is not in yet, because there are some markers they want to have a closer look at. My science friends will understand about taking cross sections of the tumor tissue for closer looks. We will get a more comprehensive picture later this week or early next week.
In the meantime, here is what we know. She had a stage two Glioma. This means she had a mass of cells taking up an awful lot of space in her brain. If it had been stage three, it would have been considered cancerous. While some of the cells remain, the neurologist said he felt comfortable just watching things for now. Doing radiation on someone young like Elizabeth can be detrimental in the long run, especially related to memory.
Her tumor is considered a mixed Glioma or an oligoastrocytoma. A Glioma often has cells that are astrocytes or oligodendrocytes. In some cases, like Elizabeth's, both types of cells are present. We are learning a lot about these thing- more than this humanities major ever anticipated knowing.
What is absolutely wild is the before and after MRIs. There is clearly a large part of her brain missing. Fortunately, the brain had compensated for this mass growing on its way and has rerouted her speech and other functions contained in her temporal lobe. She will heal, and while her brain will not grow back, the space will be filled by fluid and life will continue.
As I type this on my phone, she is sleeping soundly in the back of the vehicle. Classmates of mine whose daughter went to school with Elizabeth insisted we bring their suburban because of the bucket seats that recline. Elizabeth (and we) are thankful for that gift. It is much more comfortabke for her.
Just as we headed out over a week ago, the pavement is clear and the sun is shining. Life is good.
"'Hope' is the thing with feathers" by Emily Dickinson
"Hope" is the thing with feathers--
That perches in the soul--
And sings the tune without the words--
And never stops—at all--
And sweetest—in the Gale—is heard--
And sore must be the storm--
That could abash the little Bird
That kept so many warm--
I've heard it in the chillest land--
And on the strangest Sea--
Yet, never, in Extremity,
It asked a crumb—of Me.
It's hard to believe that one week ago, Brian, Elizabeth, and I drove to Rochester, Minnesota, anticipating her surgery on the 14th of February. For the past three weeks, since learning of the glioma in her left temporal lobe, we have been in full work mode, getting to her in Denmark, finding the best surgeon we could in a relatively short amount of time, and getting our work schedules and daily life organized so that we could take care of Elizabeth. Tomorrow, we will see the neurologist and develop a plan of action for her follow up. Her 42 staples can be taken out by a general practitioner at home, and we assume that her follow-up MRIs will be done at home as well, but the rest will be determined by the pathology report. As I mentioned earlier, we have every reason to believe her tumor is stage two. We have hope and confidence that this will be the diagnosis, and her only course of action will be to have frequent MRIs.
Time has stood still for us, but we are ready to get back to North Manchester and the normal rhythm of life. Since bringing Elizabeth back to the hotel room, we have been rather quiet, letting Elizabeth control what we do. As anticipated, she is sleeping quite a bit, but remarkably, she is not requiring much pain medication. Even though she can have pain killers every three hours, she seems content with Tylenol. Yesterday, she wanted to get out, so we took the free shuttle from our hotel to the Mayo Clinic. Under the clinic are two miles of tunnels that connect a variety of buildings together including little shops. Brian pushed her around in a wheel chair, but she still tired relatively fast. An hour was enough for her. Today, she was craving French fries, so we took her to Applebee's for lunch. Again, we came home after lunch, and she went right to sleep.
Besides being tired, the left side of her face has been swollen and black. She moves slowly and sometimes she confuses words. For example, this morning, after taking a bath, she asked me, "How do I drown this water?" Several times I asked her what she wanted to do, she repeated, "drown the water." Once I corrected her and said, "drain the water," she remembered. These situations are few and far between, but a few times she has mentioned that she does not feel smart. She knows she is processing slowly. The surgeon told us to expect this type of speech delay, and with time, she will improve, especially as the swelling goes down.
We plan on driving home tomorrow after her appointment, most likely stopping tomorrow evening somewhere in between Rochester and home. Our family would like to thank each of you for your thoughts and prayers. While in Minnesota, Elizabeth has received cards, flowers, pictures, balloons, and boxes of goodies (food, music, and sparkle sweatshirts), and even a little money for her parents "to get a drink." She has had numerous text messages, emails, and Facebook messages. She feels hopeful about recovery, and looks forward to taking it easy at home. Thank you, friends, thank you.
“You wake from dreams of doom and--for a moment--you know: beyond all the noise
and the gestures, the only real thing, love's calm unwavering flame in the
half-light of an early dawn.” - Dag Hammarskjold, Markings
At 4:30 this morning, I awoke to the chime of my phone indicating I had a text message. In the darkened hotel room, I reached out for my phone to find a quote sent by one of my kindred spirits back home. This dear friend of mine often sends me inspirational, often deep spiritual, thoughts and I take great comfort in exploring my own humanity through these quotes, excerpts, or words she sends. As I rested still in my bed, I heard Elizabeth whisper, "Mom, can you get me more ice?" The past twenty-four hours have been quiet and uneventful, ones filled with silence or the gentle flicker of the Olympics in the background. After bringing her back to the hotel yesterday morning, she has been able to sleep and rest more comfortably. At this point, sleep is the best medicine for her, and she has asked for very little.
The ice brings her comfort from the swelling that naturally takes place after a craniotomy. Interestingly, the puffiness and blackness of her left eye has caused her the greatest concern. Her hair, because of its length and thickness, hides the 42 staples that decorate the side of her head, but the blackened eye and dark temple and jaw bone don't look familiar to her and make her look different. The surgeon has also prescribed a steroid to reduce the inflammation, and we know over the next week or two that will disappear. I filled her ice bag, and when she said her head "kind of" hurt, I gave her a stronger pain killer. While she has a prescription for oxycodone that she can take every three hours, she has taken very few of these, and says the Tylenol lessens the slight discomfort she has. Brian and I are still in awe that her head doesn't hurt; instead, as we were warned, her jaw hurts the most because of the cutting through of that muscle.
Being together in the quiet of a hotel room has been good, and we look forward to meeting with the oncologist on Wednesday. Elizabeth is ready to get home to see her brother, her pets, and her family and friends. Fortunately, her good Denison friend/roommate's parents live near Rochester, and they were able to visit yesterday for a bit. The mother is the person responsible for getting us into the Mayo Clinic so quickly, and we will forever be reminded of the importance of connections and action. Several family members called, and Elizabeth was also able to FaceTime our dear neighbor children. She had worried that her darkened eye and railroad track of an incision would scare them, but they seemed rather intrigued. Right before the FaceTiming, the three of us had had a bit of an argument over including photos of her incision in a public forum. Brian wanted to protect visitors to this blog, but Elizabeth was pretty insistent that to not sharing them keeps important information secret. The incision and the staples as well as the puffy and darkened face are part of the story.
Last night's weather report is calling for six inches of snow, and yet we seem oblivious to the world outside our window. We have no need to venture out so it will be another quiet day for the Schillings, and that is okay with me. The quote my friend sent me in that early morning text message was one by Dag Hammerskjold. It reads, "The longest journey is the journey inwards. Of him who has chosen his destiny, who has started upon his quest for the source of his being." May we each find solitude and clarity on this quest.
At 6:00 this morning, Elizabeth texted me and asked that we come earlier. She could not sleep and wanted us there. Of course, we finished getting ready quickly and walked briskly the 1.5 blocks to Saint Mary's. When we snuck into her room, we found her sleeping deeply with a cool-gel compress across her eyes. She was sleeping so deeply that she didn't hear us come in, and she certainly didn't hear the doctor when he came in around 7:30 to check on her.
In fact, she was so disoriented when he woke her it took her a second to be able to answer his questions: do you know the month? do you know your name? do you know where you are? Then he said, "Do you want that thing off your head?" When she said, "Absolutely," he walked over and pulled it right off without hesitation. It had worked itself loose in the night. What a relief to see just a 1 inch swath of her hair shaved where the surgeon had made the incision. It is a somewhat odd shaped question mark that begins just below her temple in front of her left ear and wraps up above her ear and then up towards the top of her head. She has a few small marks on her forehead where the metal bars held her head immobile, but remarkably, one can hardly tell she had major brain surgery less than 48 hours ago. Fortunately, the way she parts her hair allows it to fall across the incision, hiding the 42 staples.
Even better news than the turban coming off was the doctor telling her he would start the paperwork for discharging her. Once he left, the nurse brought us towels and shampoo and conditioner. We had to spend awhile gently brushing her hair as it had several places soaked with blood and had been matted beneath the turban. Elizabeth was alarmed when a large chunk of her hair came out in her hand, but we believe it was a casualty of the nurse loosening the turban last night by cutting it slightly above the ears. I helped her shower and get dressed in her street clothes, and immediately she felt better. After a bite to eat and going over the directions with the nurse, we were able to bring her back to the hotel.
The sun is shining in Rochester, Minnesota, and the air feels a bit warmer. Elizabeth is sleeping deeply on the hotel bed wrapped in her blankets and warmed by the sun coming through the window. We have no plans for ice skating or curling at the moment; instead, we are just going to hang out for the next few days and watch the professionals in Russia. On Wednesday afternoon, we have an appointment with the oncologist at the Mayo Clinic. Our plan at this point is to head towards North Manchester once we meet with him. Elizabeth wants to be home with her family and friends and furry friends, and she plans on being in the stands at Columbia City Friday night cheering on those Squires.
I know I have said it before, but I will say it again. Our family holds close to our hearts scientists, researchers, and skilled health care providers including surgeons, general practitioners, and nurses, and every specialized person involved in caring for the sick. From the moment Elizabeth experienced her seizure on January 19, she has had the most remarkable attention by every person she has encountered. Hippocrates wrote, “Wherever the art of Medicine is loved, there is also a love of Humanity.” The health care providers who have joined Elizabeth's journey have demonstrated their love her as a person and have wanted the best for her. At every step of the way, we have witness doctors and nurses treating our child like their child/grandchild/sister/friend. That oath to use medicine for the love of humanity has made all the difference in the world.
Students of mine know I love words, whether found in poetry, plays, essays, novels, or short stories. I often find quotes in a variety of sources that speak to me or relate to a topic I am teaching. Sometimes I share these words with students; other times, students bring them to me.
I marvel at how authors reflect what I am feeling, often reminding me of important life lessons; each of us is on a personal journey, but we are often connected by a common theme. I have taken great comfort in sharing Elizabeth's experience with you because it allows me to express our feelings as well as keep her family and friends around the world in the loop; this blog has allowed us to be transparent about her health and has kept us connected to others, and yet, this journey has also been one uniquely our own. There have been quiet moments. There have been tense moments. There have been anxious moments. There have been angry moments. There have been thankful moments.
One of my favorite authors, Maya Angelou wrote, "Courage is the most important of all the virtues, because without courage, you can't practice any other virtue consistently." She does not define courage for us, but she reminds us of how centered it allows us to be. Elizabeth has certainly shown courage over the past few weeks, but others in this hospital and in our own circle of family and friends are as well: the friend whose father is fighting for his life, the neighbor who is a breast cancer survivor, the teacher who taught my child to write beautifully fighting pancreatic cancer, the dear friend living with her three children two states away from her husband because of their work and life circumstances, the sister diagnosed with Chron's disease, and other family members and friends with their own personal struggles. Each of these people and each of you is courageous. Each of you.
It occurred to me tonight as Brian and I slipped away for supper that maybe I haven't given you a full picture of our story. Earlier, I posted several pictures of Elizabeth from this afternoon. These pictures show her Facetiming with one of her best friends, posing with a Danish flag, and a few others. One might look at these pictures and have the sense that everything is "hunky-dory." I certainly don't want to give the Leave it to Beaver feeling despite how I feel about the Cleavers. The past few weeks have been filled with great fear. We have had our arguments rooted in anxiety. While we have been brave and confident in our plan of action, things have also not always been gone as planned.
Shortly after posting those pictures, Elizabeth's head began hurting - badly. Her pain medication had worn off, and the tight turban she is wearing to keep the swelling down began pinching her ears. Almost immediately, the smiling young woman from the pictures melted into the young child I remember needing comforting when she fell or had her feelings hurt. Grabbing her ears and pulling at the turban, Brian and I stood frozen for a moment not knowing how to help. Fortunately, nurses have a sixth sense (or great hearing), and Elizabeth's nurse was in the doorway checking to see how things were. She was able to cut the turban a bit to relieve the pressure. She was also able to administer two oxycodone and Tylenol to kill the pain. This was a not so gentle reminder that Elizabeth's recovery is not going to be immediate.
Earlier today, Elizabeth had all of the wires and monitors removed and she was moved to the top floor of the hospital. Out of ICU, we are relieved at how great she is healing, and yet, the incredible pain she felt reminded us that she is not Wonder Woman; although we believe she can do anything at this point, she is still a vulnerable young woman. Her courage has been great, but that courage has had its ups and downs just as everyone else's. Tomorrow, though, is another day, a brighter day, and we are one step further into this journey.
As we sit by Elizabeth’s bed in the Neurological ICU at Saint Mary’s hospital, we are reminded how fragile life is. In the waiting room down the hall and just doors away, families are wrestling with major life decisions and long struggles ahead. We met a friendly barber whose wife of 49 years suffered a stroke and has lost her capacity to understand speech. We met a family from Iowa whose middle-aged sister has multiple brain tumors and a mass on her lungs. And we met a family whose wife/mom had experienced a seizure like Elizabeth and been diagnosed with a tumor as well that required immediate surgery. Constantly, we are reminded that we are the lucky ones. Elizabeth’s situation could have been worse, and the seizure allowed us to catch it at a treatable stage.
Yesterday was the longest day of our lives, and we would not be honest if we said it was a piece of cake. At 6:45 AM, Elizabeth walked away from us, and it would be nearly twelve hours later until we would get to see her again. Brian and I were both stressed by the waiting, and even though we knew everything would be okay, it was hard not to worry. We appreciated the emails, texts, and posts of support; they helped us pass the twelve hours.
In the post-op meeting, the surgeon indicated how pleased he was with the results. Because of the
brain mapping and intra-operative MRI, he was confident he had removed 99% of the tumor. The MRI indicated .3 ml of tumor remained, but because of its location, he did not want to risk damaging
her memory. In the end, the surgery went exactly as he had described and anticipated.
When we were able to see her last night, we were amazed at how beautiful she looked just having endured an entire day of brain surgery. With her red pony tail sticking out the top of her turban, she smiled when she saw us, and asked, “How are you?” She then proceeded to recall quite a bit of her surgery. Brian and I had been convinced she would remember nothing (or very little), but she clearly recalls conversations and procedures conducted during the surgery. Of course, as a typical college kid, she asked for her cell phone and began to read the many texts, posts, Instagram, and SnapChats. Once we knew she was okay, we slipped out for dinner at a restaurant across the street. We returned for a little bit, but we knew the best way to get her healthy is to have her sleep. The nurse gave her something strong to knock her out, and Brian and I were able to get a good night’s sleep as well back in the hotel.
This morning, we were able to get to the hospital by 6:15, and we had a great conversation with the neurological surgeon who has major rock star status in our family. In fact, we are pretty sure he is one of the most amazing people on this planet. Not only does he have skillful hands and intelligence beyond belief, but he is amazingly personable and spoke with her like one of our family friends. As our appointment with him on Thursday came to an end, Elizabeth handed her surgeon a box of DeBrands truffles and said, “Because you are going to be so busy with me tomorrow, I thought you would need a gift for your Valentine.” He doubled over laughing and exclaimed, “Oh, my gosh, I forgot tomorrow is Valentine’s Day. This is great!” His genuine gratitude and carefree conversation with Elizabeth made her that much more confident in his ability to care for her. He did admit that he might not share them with his wife who also works in the Mayo system.
During his visit this morning, the surgeon was excited with how her surgery went and how well she is responding, and he called her a star. She did exactly as she had been instructed. Elizabeth’s teachers from preschool and beyond will not be surprised by her willingness to please. He said that she can move out of the ICU this afternoon to a different floor, and if she keeps doing so well, she can be discharged tomorrow.
Interestingly, Elizabeth does remember with some clarity the conversations they had and the discomfort she felt during the surgery. A few times she told him it hurt, and he was able to knock her out. At other times, while they were removing the tumor, they needed her alert to monitor her brain activity. As an avid sports fan, they talked about his boys’ hockey seasons and her brother’s
basketball season. They also talked football, and she analyzed this year’s Super Bowl game.
Today is one of rest. Brian and I are working quietly in her room, and she is sleeping thanks
to pain killers. She has said she does not have a lot of pain, and the greatest pain is in the jaw muscle, as they had to cut through it. They have removed all of her wires and tubes with the exception of the ports for intravenous drugs, and she is resting comfortably with her stuffed brain (a gift from a colleague) and her hot pink and orange fleece blanket (handmade by a high
Elizabeth is on the road to recovery. This week we will meet with an oncologist to discuss the pathology report and to determine how she wants to treat the remaining part of the tumor. For now, we are thankful for the gifts of family and friends who held us so closely in prayer, thoughts, mediation, and fasting yesterday and for the past three weeks. We are also extremely thankful for the skilled surgeon and healthcare providers who have held her so carefully in their hands. The synchronized flow of care here at the Mayo Clinic is remarkable.
Valentine’s Day came and went, but it was one the Schillings will always celebrate as the day we were shown the deep love so many people have for our family. I hesitated last night to post on FaceBook a picture of Elizabeth shortly after surgery, but so many people had thought about her all day that it seemed only right after she gave me permission.
We still have more waiting to do as the pathologists do their work and Elizabeth’s body heals, but for now, we are content and quiet. In this quiet, we have time to think about the whirlwind of the past three weeks, and we are reminded of how little control we have over our lives and how much our lives have changed. Ultimately, Deepak Chopra was right when he said, “Even when you think
you have your life all mapped out, things happen that shape your destiny in ways you might never have imagined.” This we know to be true.
This is going to be short because we are hoping to see Elizabeth in a few minutes. We talked with the surgeon as well as the attending intern, and she came through with flying colors. He removed nearly one cup of material, taking 99% of the tumor. He had to leave a little part because of its location.
Never have I wanted to hug someone as much as I did this surgeon. While we will have to wait for the pathology report, things at this point are exactly what we wanted them to be.
Thank you for those prayers and positive thoughts. They certainly were felt by all.