We realize it has been a while since we last posted but we have been busy. Days after the funeral Katie and I headed to South Carolina for some much needed rest. We were exhausted and the sounds of the ocean and the unbelievable food at the Westin were just what we had in mind, many thanks to Uncle Dave and his Westin contacts for setting that up! We read, we laughed, we cried, we ate, we played golf, and then I think we ate some more, but most important we were together. We drove home after a few days in the sun and then Katie and I flew up to Boston last week. Told you we were busy. Uncle Dave and Alyssa picked us up from the airport and we headed back to our little apartment. It was tough going back to our home away from home. Every book, article of clothing, item on the shelves, and every piece of medical equipment reminded us of our Emily. This is where we enjoyed our girl and fought for her life. It was very emotional being there but something we had to do. The other reason we were in Boston was to go to the Dana-Farber Marathon Challenge Pasta Dinner on Sunday and for me to run the Boston Marathon on Monday. Both were going to be very difficult for different reasons but something we had to do, in honor of our Emily Anne. Friday night we went out to dinner with Dave, Alyssa, Jacky, and her husband Mike. We ate outside this place called the Public House in Brookline and shared many stories and caught up. It was great meeting Mike and seeing Jacky again, and if you don’t recall, Jacky is a 9North nurse and close friend who came to work on her day off to help us make Emily’s passing as beautiful has her life. Saturday night we went out to dinner with Cameron and Aileen, parents of Avalanna. Avalanna is a very cute, very chatty, little girl who also had an ATRT. Avalanna is doing really well and it was therapeutic hanging out with people who have been “there.” They know the roller coaster life becomes when you fight this tumor and even beyond that, they are fantastic people. It was great to see you guys. Sunday night we attended the Dana-Farber Marathon Challenge (DFMC) Pasta Party. The Pasta Party is put on the night before the race for the runners, families, friends, patient partners, and volunteers of the DFMC. There were over 1800 guests! The hall directly outside the room holding the 1800 guests is lined with laminated decorated posters of kids who are fighting cancer or who have fought cancer. The second poster in the line was or our Emily Anne. A Dana Farber employee named Meghan decorated her beautiful poster and I think you’ll agree that she did a great job. It was very hard seeing her poster but we couldn’t imagine being anywhere else. We ate pasta, talked with the people at our table, and enjoyed the music and energy of the room. It didn’t take us long to realize that everyone we talked to had been impacted by cancer in one way or another. The stories were sometimes sad, always inspirational, and too vast to count. One part of the program was called “In Memoriam” where they showed pictures of kids who had recently passed away and Emily’s big beautiful smile was enjoyed by close to 2000 people. Once again, it was very difficult to see her up there but we knew we weren’t alone because her picture was one of about 30. Too many. The other highlights were motivational speeches by Boston Billy Rodgers (four time winner of the Boston Marathon), Jack Fultz (one time winner of the Boston Marathon), and a very animated speech from Uta Pippig (three time winner of the Boston Marathon). Another highlight I would like to mention is the Oncologist who spoke about the impact our fundraising is having on innovative basic cancer research. Most federal funding is based on a real measurable track record, and the money raised by Dana-Farber goes directly to innovative cancer research which allows scientists to test their new ideas, generate a track record, and then go after the federal funds. The DFMC raised over 3 million dollars this year, thank you all very much!!! Sunday night I stayed in Brian Stickel and Cathryn’s hotel room. I’ve known Stickel since I lived in Danbury and he and Cathryn have been unbelievably supportive throughout Emily’s treatment. An added benefit of having Stickel there is the fact that he’s one of those uber athletes who’s run marathons and gone further. He loves the challenge and is equally patient with those of us less inclined to run 26.2 miles on a whim. Monday morning came very fast. We woke up at 4:30am and were on the busses headed out to Hopkinton by 6:30am. After a couple of hours of stretching, hydrating, fidgeting with shoes, and decorating ourselves (see pics) we started the Boston Marathon. Stickel and I loved running past the biker bar in the early stages of the race, you could smell the beer from the road and feel the Guns and Roses coming from the bahs’ speakahs. At the halfway point, 13.1 miles, the women of Wellesley could be heard from almost a half mile away. Thousands of women screaming, lined two and three deep, yelling, holding signs that read “Kiss me for good luck,” or “Kiss me I’m from your home town.” It was classic and no, we didn’t kiss anybody. As we entered Boston at mile 23 my legs were cramping, my quads were burning, and all I could think about was getting to Katie who was going to be a mile 25. I was falling apart both physically and emotionally. My run was now a slow trot and I needed something to get me to the finish line. Around mile 24 we saw Kristin, one of Emily’s nurses and one of the sweetest people we’ve ever met. She had a big beautiful sign of Emily that read For EM! Emily’s picture and Kristin’s motivational words kept us going until about ten minutes later when Kate, Emily’s awesome NP from 9N almost tackled me and then ran with us until we got to Katie. Around mile 25 we finally saw Katie, Dave, Alyssa, Karen (another awesome 9N nurse!), and Jacky. It felt surreal. Here were the people that cared for Emily all year, loved her, and we were all together celebrating her life. Moments later we found Cathryn, Stickel’s girlfriend and after some hugs we were off to the finish line. Fifteen grueling and emotional minutes later Stickel and I crossed the finish line. 26.2 miles in five hours and seventeen minutes….in honor of our Emily Anne.
Later on we heard people yell, “Run for Emily,” which motivated us like nothing else. There was a jazz band playing on a roof, a line of senior citizens Stickel and I high-fived, and all the while Stickel kept me running. Besides the water stations we never stopped. With Emily by my side and Stickel as my coach we kept running. We ran up Heartbreak Hill, past Boston College, and into downtown Boston. I usually ran in the middle of the road while Stickel would pick up pretzels or some other kind of salty snack from some cheering fan and drop it off. He was my refueling plane and I couldn’t have finished the marathon without his help, many thanks buddy.
In Honor of our Emily Anne
A Beautiful Tribute, Part 4
Rev. Nancy Jenkin's Words We are here today to say goodbye to Emily Mandell. Saying goodbye is never an easy task for us but when the person who has left us was so young, it is doubly difficult. But it is important that we do this and important, I think, that we do it together because we draw strength and comfort from knowing that we are not alone in our sorrow. We are engulfed with an emptiness that is thunderous. Time has become an echo: empty, empty. We wonder how we will ever fill up the moments. This morning I want to offer you three challenges. I’m sure that you must be thinking that this week has provided each of us with challenges aplenty, and I would agree with you for the most part. But the challenges that I want to talk to you about are tasks that will honor precious Emily and that will hopefully play a role in each of us finding a new normal for our lives after this heartbreaking event. Life won’t go on in the same way without her. If it were the same, we’d have to conclude that her life meant nothing, made no contribution. The fact that she left behind a place that cannot be filled is a high tribute to the uniqueness of her soul. The first thing that I want to challenge you to do is to remember. The Old Testament tells us that those who die live on in the hearts and memories of those people who knew them and loved them and learned life lessons from them which they pass on to their children and grandchildren who then pass them on to future generations guaranteeing that the person lives on long after they are gone from this earth. We each have our own memories of Emily, and even if we didn’t get to spend much time with her while she was in Boston, most of us read all the messages on Care Pages and heard what an amazing fighter she was and how courageous she was when she didn’t even know the meaning of the word. We looked at all the pictures of her and celebrated the good news and cried just thinking about what she was having to endure while she was being this inspirational trooper. So many things will make us remember Emily as time goes by. I want to read to you a passage from Gates of Prayer, the Reform Jewish book of worship, that speaks to me at times like this. In the rising of the sun and in its going down, we remember them. Indeed, Jesus asked his friends before his death, to “do this in remembrance of me.” Remembering Jesus through eating the bread and drinking the wine of Holy Communion is central to those of us who profess Jesus as Lord. So I encourage you that now that Emily is gone, never hesitate to tell her story. She has left us behind with treasures to be shared. When you remember, your memories are sent far into the future, a sweet heritage for all those who will come after. Look for her in the daffodils of spring; listen for her in the winds of winter; remember her and smile. You started missing Emily long before she was gone. Keep loving her long after the memories bring her back to you. My second challenge to you is to hold on to the hope and promises of our faith. Jesus said, “I will come again and will take you to myself, so that where I am, there you may be also.” Like his disciples, it is hard to grasp just why we must be separated from our loved ones. And it confuses us that we have to endure these painful separations if God intended us to spend eternity with those we cherish. Imagine for a moment that you are on a train going across the country and you find yourself sitting next to a fine person who is also on the same journey as you. The trip is supposed to take four days so you begin an attempt to get to know this person. You discover that you have lots in common and at the end of the first day, you feel a remarkable closeness to this person and think that perhaps the relationship that you are forming could be the most important part of this trip. The next day you rejoin your friend and you spend another day relating to each other–sharing meals and conversation. The rapport grows stronger making the day pass quickly. You fall asleep the second night thinking about things you want to talk to this person about the next day. In the morning, you return to your seat and find, to your dismay, that your friend is gone. Someone tells you that he got off in the middle of the night. Of course you don’t understand what happened. He was supposed to be going to the same place you were heading. There was so much left to talk about…you don’t know where he came from or really who he was. You didn’t even know why he was on the train. And worst of all, you don’t think you will ever see him again because you don’t know how to find him. You experience a mixture of sadness and frustration, which leads you to feel something between bitterness and anger. So many questions: Why did he have to leave? Did someone or something make him leave? It’s not so much that he’s gone. It’s that you don’t know where he’s gone and you really would like to see him again. Then the porter comes down the aisle and gives you a simple message. Your new friend was indeed going to the same place as you were going and was going to see his father. During the night, he received an emergency message that his father needed him right away so he had to get off the train at the next stop and fly the rest of the way. The porter gives you a phone number so that you can reach your friend when you arrive at your destination. This understanding changes night into day and bitterness to joy. The sorrow that we feel at losing Emily can be bitter or sweet depending on one ingredient—the understanding of our origin, our purpose, and our eventual destination back with the loving God who created us. Our faith assures us that there is indeed eternal life surrounded by all the saints and that nothing can separate us from the love of God in Jesus Christ. A loss that we can’t understand or accept is bleak and stark and comfortless, but Jesus assured us that these separations are not permanent. Matty Stepanek, an 11 year old boy who was one of several people in his family to fight muscular dystrophy, wrote many poems including this “letter to God.” It said, I think we can all rest assured that Emily has her first hug from God. And just as God was right there when Emily needed that hug, God is here with those of us who haven’t made the trip yet. God has promised to be here with us when we have to deal with the roughest of times, the saddest of life’s moments. At the same time that God welcomed Emily with both hands, God had both arms around each of us. God is hurting right along with us because God remembers the loss of his own son. I challenge you to hold onto the **** that we will be reunited with Emily and to continue to trust in God’s grace and mercy. That doesn’t mean that it isn’t ok to be angry and ask question of God. But it is important, I think, to remember that God didn’t take Emily away from us; the cancer did that. And that it is God who will have arms outstretched to you when the time comes for that homecoming and reunion. The last challenge I have for you is to heal. Some of you might wonder if that is possible right now. I understand that as I’m certain that God does. But I urge you to work hard at healing. There’s a lovely book called The Wing by Ray Buckley that relates the Native American legend about a bird named She Who Flies Swiftly who has a broken wing. The story tells of The Creator gently touching the little broken wing and of every creature in the forest gathering to see She Who Flies Swiftly take off into the sky once more. But when she tried, her wing didn’t open and she fell swiftly to the earth. Everyone had ideas about why She Who Flies Swiftly could no longer fly, but after a while when no answers came, they didn’t even come to stare at her anymore. She wept and cried out to The Creator, “Why can’t you fix me?” But only the leaves on the trees answered. Day after day She Who Flies Swiftly shouted at the Creator, but the Creator was silent. Then the little bird thought that perhaps if she asked more quietly, the Creator might listen. She began to sing—notes of pleading, notes of sadness, notes of incredible beauty. Her friends came to listen day after day, but She Who Flies Swiftly was lost in her song to the Creator and did not even see them. Gradually something changed and her songs were not nearly so sad. In fact they were nearly joyous. And the author writes, “when it seemed that the music could not be more lovely, a sound like none had ever heard was added to the music of the bird. Quietly at first. Then strong and assured, and above all, loving came the voice of the Creator In the evening, with the people gathered around, the Creator and She Who Flies Swiftly sang a duet. For an instant the People bore witness to the meeting of two hearts—one mighty and one small. But She Who Flies Swiftly did not notice. She was singing and the voice that the Creator had developed in her lifted above the wood. Today, a song can still be heard. It is a voice which came from a broken wing sung by She Who Has Been Healed.” Psalm 147 says that “He heals the brokenhearted and binds up their wounds.” We were created to be God’s partners. So I challenge you to sing your songs of healing with God and with each other and with all those people who love you and Emily, so that one day in the not too distant future, your songs will be heard soaring so high up to the heavens that they will surely make Emily smile. So while we are here to say goodbye to Emily this morning, we joyfully acknowledge that she is healed and whole and pain free—and running around heaven listening for our songs. Goodbye, sweet Emily, but only for now. Thanks be to God.
In the blowing of the wind and in the chill of winter, we remember them.
In the opening of buds and in the rebirth of spring, we remember them.
In the blueness of the sky and in the warmth of summer, we remember them.
In the rustling of leaves and in the beauty of autumn, we remember them.
In the beginning of the year and when it ends, we remember them.
When we are weary and in need of strength, we remember them.
When we are lost and sick at heart, we remember them.
When we have joys we yearn to share, we remember them.
So long as we live they too shall live, for they are now a part of us, as we remember them.
Dear God, For a long time, I have wondered about
How You will meet me When I die and come to
Live with you in Heaven. I know You will reach out
Your hand to welcome Your people into Your home,
But I never knew if You Reached out Your right hand
Or if You Reached out Your left hand.
But now I don’t have to wonder about that anymore.
I asked my mommy and She told me that You
Reached out both of Your hands, and welcome us with
A great big giant hug. Wow! I can’t wait for my hug, God…
Thank You. Amen.
AMEN
A Beautiful Tribute, Part 2
Christie Bell's Tribute I will never forget the look on Brian’s face when he carried Emily out to a very large, very anxious crowd of family waiting to meet her for the first time on the day she was born. It was one of pure joy, awe, admiration, and love. From the first moment I saw her I felt such overwhelming love for her and such a strong feeling of knowing that this was an exceptionally special baby. I walked in to see Katie for the first time holding her precious baby and all I could say was “she is perfect”. Many of you know how I feel about my sister. I have always felt such admiration for her and such a strong sense that she is here on this earth for such an important reason and that she is part of something so much bigger than we will ever comprehend. When Katie was born there were complications that caused the doctors to tell my parents that she probably won’t make it. Little Katie fought so hard and so courageously and grew and thrived against impossible odds. When she met Brian the love between them could have been nothing more than another step in the plan. Seeing the two of them together was just so perfect. The start of their family. Two of the most amazing people on earth joining together. Emily couldn’t wait to join them here. I will never forget when Katie told me she was expecting. It was a perfect look of equal parts joy, shock and excitement. When Emily finally arrived Katie and Brian slipped into the role of parents as if that is always where they were meant to be. As teachers they have inspired, taught and cultivated so many young people so I think it was just a natural role for them. In those first few weeks Emily decided that night time was party time. She would wake right up at about midnight. I will never forget coming over to their house, Brian would hug me and thank me and retreat upstairs for some much needed rest. Katie and Emily and I would do x-box karaoke for hours on end. The person singing would hold Ems and bounce her and dance while the other would sing back-up. Katie never even seemed tired during all of that. She was always just so fully and completely happy. When Emily was 3 months old she had a kidney infection and was in the hospital for a few days. The Monday after she was released Katie had to start back to teaching. My mom and I each took a day off of work to spend with Em so she could have some more time to get better before going to daycare. I will always be so grateful for this. Emily and I sent mom and dad off to work and we got to spend an entire day together, just the two of us. I think this was the first time that I had watched a baby for that long alone. I loved every single minute of it. I didn’t put her down all day long. She snuggled in my arms for eight hours straight. I remember so vividly kissing her left cheek and then her right over and over again and she would turn and smile at each kiss. Thank you Katie and Brian for letting me have that time. During the course of Emily’s treatments Katie and Brian and Em were in the hospital in Savannah, flew to Boston, stayed in the hospital there for a while, lived in the Ronald McDonald house, and numerous hotels before finally settling into their apartment. During all of this, Katie and Brian always brought such a sense of normalcy and comfort to the family. I remember being in a cramped hospital room, doctors and nurses flying in and out, monitors beeping, and still, before Emily would close her eyes for the night, Katie would read her a story and sing “Twinkle Twinkle.” Being a mom now I know how sometimes the craziness of the day just gets the better of you and these little moments can slip away so fast. Not for Katie and Brian and Emily. Each moment was a little treasure stolen, savored, enjoyed, and then tucked away for safe keeping to last them for the rest of their days until they are with Emily again. Katie and Brian savored every day with Emily and enjoyed every smile, every grin, every roll over and every kick to the fullest. Emily taught us all so much in her short time here. She has touched more people in her short two years here on earth than I think most do in 100 years. My heart bursts with pride when I think about the beautiful daughter that Katie and Brian brought to our family. On behalf of our family, the Mandell’s, and all of our extended family and friends, I thank you Katie and Brian for creating such beauty, such grace, such a sweet spirit that was our Emily Anne. We are forever in your debt and Emily will live on in all that is good and pure and sweet.
Katie and I have always talked about being moms together. We would day dream about taking our babies on walks together, shopping, and taking them to see Annie on Broadway. The month after my daughter Kate was born before Emily, Katie and Brian left for their spring break trip was so special to me. We went on so many walks with the girls, we would eat chick-filet in the car before making yet another trip to babies-r-us. It was beautiful. When Emily was diagnosed and went up to Boston, 2 month old Kate and I hopped on a plane and flew up to see Emily, Katie and Brian. I will for the rest of my life be so grateful for that. Katie and I strolled the girls around the hospital. All four of us took sheer delight in the bubble wall, watched the fish in the fish tank for hours, strolled the gardens, and Katie and I had some pretty good matches of lady packman while the girls napped. Emily and Kate loved being together. Emily always loved to hear high pitched babbling, be it from mom, nurses, whomever, and Kate was happy to oblige. They would wrap their arms together and it was like Emily could relax in the presence of a baby. I am so thankful that we were able to spend this time together.
I know that Katie and Brian were chosen for Emily. I know that they were the special, loving, compassionate, selfless, teaching parents that Emily needed here on this earth. God entrusted this special spirit to them and knew that he could trust Katie and Brian to love her unconditionally, in sickness and health, that they would sacrifice all that they know and have on her behalf. He knew that she would be loved beyond knowing and that in turn, she would give them that same love. She loves her earthly parents beyond words and is thanking them right now for her joyous time on this earth. She will be with them, with all of us, until we are together again. She will always be a part of our family and I am so grateful that no one can ever take that away from us. Katie and Brian were chosen to bring her here. Katie’s higher purpose here on this earth is again realized. Everything in Emily’s life has come full circle. As Katie said, she outgrew this body here on earth. She is perfect.
A Beautiful Tribute, Part 3
Stefan Sutich's Tribute Hi, my name is Stefan. There are many who do not know me so let me quickly describe who I am . . . I’ve known Emily’s dad Brian since the age of 2. And, I am the father of a boy named Andrew who once tried to chew on Emily’s hand during a teething stage. But let’s come back to that story later. I’m probably not alone in being someone who thinks about life and death, and the purpose of life far more than I talk about. And through the many hours I have thought about such things, my thoughts always boil down to one central theme: namely, --you don’t have any control over when you are born and we have ultimately little control over when we leave this world. – But, What we do control is how we live in between those two points and the value of our lives is how we respond to the various circumstances we encounter during that time. Of course I had always associated these thoughts with how one lives in adulthood. But it didn’t take me long to see that this concept applies no less to our beautiful little Emily. And by numerous measures, she lived a wonderful life. But even more important than her travel, how many children can claim to have been the recipient of the amount of love in an entire childhood that Emily experienced? I know I speak for everyone in the room that those who have known Brian and Katie have been in awe (and I’m not sure the term awe even properly captures it) at how they provided for Emily. They used every person, every resource and every ounce of their beings, out of the purest form of love, to make Emily’s life everything it could be. Emily may have questioned a few things during her life, but I know she never questioned for one nanosecond the love that her parents had for her. Indeed, if there is a blessing that she had the developmental delays that she had, it is that she could literally feel how much her parents cared and would give anything for her. To me, there is nothing greater in life than experiencing the intensity of that love, so it that regard Emily lived unbelievably well. That is not to mention Emily’s unbelievably wonderful grand parents, Cheryl, Greg, Mike, and Sandy, much better known as Nanna Bannanna, as well as Emily’s aunts and uncles, and all the rest of her family, and even little cousin Kate who visited her up in Savannah and Boston. And honestly, how many people can say, no matter how long they live, that they had over 2000 visitors to a website set up on their behalf with over 3000 messages posted? That’s pretty good bragging material for a very humble little girl. One of my favorite Emily stories came from when she was probably 6 months old, give or take a few months. Any parent knows at that age it can take a lot to settle a little one down and get them to go to sleep. Well, Brian called up and told me how he put Emily down, she seemed fine, he went downstairs. But 5 minutes later she was crying. He goes up to check on her, she seems okay but picks her up, calms her down, she seems content. He goes downstairs, five minutes later she is crying. He goes upstairs and through the whole routine again, goes downstairs again, and yet 2-3 minutes later she is crying. But when he entered the room this time she started smiling. And to quote Brian “Stefan, that is when I realized she was messing with me…she was manipulating me…and I’ve never been so proud.” Trust me on this one, messing with Brian is the definition of good living. I want to share a couple of stories Brian and Katie shared with me, and I hope I do them justice. On the camping trip that they took to Maryland, they stayed in a drive up camping area. Later that day apparently the Mandell family were besieged by a vicious sparrow that kept diving at them in attack mode. (I learned, in preparing for this talk, that Katie apparently has a fear of birds.) Anyway, Katie took Emily and dove into the car while papa bear Brian defended his family from the bird. In all the commotion, Katie’s fear of birds, and Brian’s frantic efforts, there was Emily laughing her head off. Katie’s instinct was to comfort and protect Emily, but it was Emily’s smile and laughter in a oddly stressful situation that no doubt broke the tension of the moment. Just about two weeks ago, as everyone knows, Emily had an MRI that did not come back well. Brian and Katie were devastated. They went back to the apartment feeling down. They put Emily in her support kid cart. And despite the terrible news and pit in their stomachs, out of nowhere there is Emily beaming a smile. Brian and Katie started dancing around. They would do anything to comfort Emily but on a difficult day it was Emily who comforted them. To me, such resilience in the face of difficulty, is the key to life, and in this regard Emily always lived well. One last story, that I referenced earlier, it was March of last year just before the Mandells of Reston made their trip to Florida and Savannah. Brian and Emily were over to our house. Emily was not feeling great but of course we didn’t know the extent of it yet and we put Andrew and Emily on the floor next to each other and they were sort of touching hands, grabbing each others shirt cuff and before I know it Andrew has taken Emily’s hand up to his mouth and is attempting to chew on it. Emily didn’t cry or anything but rather just pulled her hand away from her buddy chewy chewerson with the same dignity she always showed. That is a moment that will always stay with me. Even more than that, I want to thank you Emily, because whenever Andrew is having a tough time with something in his life, I can always tell him your story and tell him how when he once held the hand of the most beautiful, strong and courageous little girl he’ll likely ever know. I have no doubt it will help him with whatever challenge he is facing. So yeah we could measure how well Emily lived by the amount of time she spent with us. But that would certainly be missing the point. The fact is that if we look at it properly, we must celebrate Emily’s life, because she lived well.
For instance, one measure many people consider when looking at their lives is where have they been. Well, Emily’s got some stories to tell. Have you ever been to Minnesota, the land of 10,000 lakes? Well, Emily has. Can you say you’ve been to Florida? Emily can. How many people can say they have experienced Savannah Georgia in the Spring or have heard the glorious sound of the ocean slapping against the rocks or smelled the warm ocean breeze coming off the Atlantic on the Maine Coast in July? Well, Emily can. Hiked in the woods and camped out in a tent in the quiet of rural Maryland? Or experienced the sights and sounds of the hustle and bustle of urban Brookline Massachusetts? Emily has. To me, such experiences is one part of living, and in that regard Emily lived well.
Similarly, one afternoon Brian picked up Emily from daycare when she was still small enough to be turned around backwards in her car seat. As Brian drove down the road a major thunderstorm rolled in and pelted massive hale that forced cars to pulled off the road. Brian, being nervous that Emily would be scared from the sound of hail and thunder, pulled off the road, ripped his seat belt off, dove in the back to comfort Emily. However, he found her smiling, giggling and loving the sounds of the thunderstorm. Brian went to comfort Emily but it was Emily who comforted him.
A Beautiful Tribute, Part 1
We want to thank everyone who was with us or thinking about us on Friday and Saturday. Emily looked so peaceful on Friday and the flowers surrounding her were amazing. The funeral service was conducted by Nancy Jenkins. Nancy was with us in the very stressful days in Savannah. Nancy baptized Emily before one of her surgeries and after we moved up to Boston, Nancy took a job in Maryland. Needless to say, to have Nancy close enough to conduct the service felt very appropriate. Thank you so very much Nancy. Finally we had Emily Cassee, Christie Bell, and Stefan Sutich each write and read a tribute to Emily Anne. Their words made us laugh, cry, and really captured the spirit of our Emily Anne. We love you guys. Emily Cassee's Tribute This is what I would have wanted Emily to have known about her life. Dear Emily, I remember when I met you for the very first time. You were just three weeks old, and it was New Year's Eve. You were just a little floppy blob of a baby, with wispy hair and dimpled elbows and little crossed newborn eyes, but you already had both of your parents wrapped around your littlest finger. I remember watching your dad hold you on his lap that night. Every now and then he'd lean down and kiss you on the top of your soft, downy head. While the rest of us were singing bad karaoke and watching Dick Clark, your dad was off in his own little world, busy falling in love with you. You were loved fiercely from the very beginning, Emily. When you first got sick, it was nothing short of terrible. There was so much to worry about; there were so many difficult decisions for your parents to make. There was so little known about the disease you had. There was nothing to do but pray and trust that you would come out the other side. And amazingly, you did. And that was the start of your miracle year – you defied every expectation and you fought tirelessly and you surprised everyone every single day by doing what your doctors once claimed was impossible – you lived. You were so unbelievably brave, Emily. And then your story got out into the world and people everywhere were struck by your beauty and inspired by your strength. Suddenly there were thousands of people from all corners of the globe who were moved by your story and who spent their time lifting you up in prayer, asking for healing for you and courage for your parents and wisdom for your doctors. People who had never met you or your family and who likely never will. People who cried right alongside your family when there was a setback. People who rejoiced along with them when there was a measure of hope. At any given moment on any given day you weighed heavily on the hearts and minds of so many complete and total strangers. You were such an inspiration to so many, Emily. You gave us so many reasons to smile and so many opportunities to thank God for giving us the chance to know you and to watch you grow. Your wonderful parents became the definition of selflessness. They fought for you and sacrificed for you and they loved doing it because it meant that you were still here and still blessing them with the joy of your sweet presence every day. They treasured every moment with you. They never took a single second that they were given with you for granted. They recognized just how special you were, and they reveled in it. They were leading you by example and raising you to be a compassionate, thoughtful and gracious person. But above all, Emily, they made sure to love you a full lifetime's worth in just two short years. For you are their heart; their treasure. You left a legacy behind, Emily. You touched hearts and you impacted lives. You brought people together in community and strengthened our bonds with our families and our faith. You did more with your two years here on earth than some people do in 75. And we will never forget you. We won't forget your courage or your perseverance or those big beautiful blue eyes. But we will most certainly miss you. And we know how blessed we are to have been part of your life.
Emily's Life Celebration
Emily Anne Mandell (Age 2) On March 30, 2009 Emily Anne Mandell, Of Reston, VA, passed away at Children's Hospital Boston, Boston MA. Emily is a blessing to her loving parents Brian and Katie Mandell. She is also survived by her devoted grandparents; Greg and Cheryle Robison and Mike and Sandy Mandell. She will be missed by her Golden Retriever "Trotter" and she has touched so many lives in her short life. Relatives and friends are invited to Emily's Life Celebration at Money and King Funeral Home, 171 W. Maple Ave, Vienna, VA on Friday, April 3, 2009 from 6:00 to 8:00 PM and where funeral services will be held on Saturday, April 4, 2009 at 10:00 AM. Interment will follow at National Memorial Park. In lieu of flowers the family suggests that memorial contributions be made to "Cure ATRT Now" Fund c/o Dr. Susan Chi Pediatric Neuro-Oncology Dana-Farber Cancer Institute 44 Binney Street SW 331, Boston, MA 02118. In addition to your loving messages you leave here (which the family reads constantly - thanks!) please view and sign the family's guestbook at www.moneyandking.com.
March 30
Emily, Katie and Brian have had such a wonderful couple of days. They have had family, friends, and the Children's hospital extended family all around them. We were able to play, sing, listen to music, put barret's in Em's gorgeous hair and create beautiful keepsake crafts with her all from the comfort of the huge family sized bed made by the amazing nurses in the ICU. This morning we went to 9N (their home away from home) to a beautiful room lovingly decorated by Emily's nurses/friends with pictures of Em, her favorite blanket and ladybug pillow and Trotter dog stuffed animal. Katie and Brian, with the help of a truly wonderful team of doctors and nurses, brought Emily up to the room on 9N. Katie picked Em up and carried her into the room and laid her down in a big comfy bed. The breathing tube was removed and Emily peacefully and beautifully, in the arms of her mom and dad, surrounded by loving and admiring family and friends, calmly passed. To see her little body that fought that tumor so hard and so courageously finally be able to rest and be at peace was a blessing. Her body was tied down to so many tubes and monitors and lines for so long that to see her free of all of that was a relief to us all. She touched more people in her short two years on this earth than we can even know. Katie and Brian asked me to tell you all how much your support through this journey has meant. They couldn't have gotten through it without you. They will be bringing Emily back to Virginia in the next day or two. They are planning to hold a service at the end of this week (details will be posted here as soon as possible). They have said that each of you, whether you have met Emily personally or not, are welcome to join them in celebrating her. They know that this was not something they went through alone and want everyone to have the chance to show their love for their little hero. I will be sure to let you all know the details as soon as they are worked out. My heart is so full as I write this. I appreciate so much the love and support that each of you gave to our entire extended family. During this past year I knew that I could ask you to help them and you delivered. Thank you from the bottom of my heart. Love,
Aunt Christie
March 29
Emily's situation is very serious. The CAT scan shows new blood vessel growth and a great deal of pressure inside her cerrebellum. The cerrebellum sits on top of her brain stem and it appears as though the cerrebellum is applying a great deal of pressure on her brain stem. This would explain why her breathing, heart rate, and blood pressures have been so erratic. The brain stem controls those functions and the pressure from the swelling cerrebellum is disrupting function. Yesterday we sat down with neuro-surgery, neuro-oncology, the ICU team to discuss options. Because the growths are moving at such a high rate of speed, chemo is out. Radiation is also out because it causes more swelling. Neurosurgery discussed a very dangerous and painful surgery that would extend Emily's life by reducing the pressure but because the scans show new blood vessel growth it would be extremely dangerous and because of that fact, surgery is out. Like I said, Emily's situation is very serious. This is very difficult for me to write but our plan, after much prayer and thought, is to make Emily as comfortable as possible while we still have her. She is the absolute definition of courage. She is our hero. The last year has been a gift from God. Emily was only given a couple of weeks and since that time she has smiled, ALOT, felt good, rolled around, gone to the dentist(Katie will love that I added that one) , and made a significant impact on so many of us. She is letting us know its time. God is letting us know its time. As I write this Katie is giving her a bath and putting her in some really cute outfit. Last night the ICU team completely rearranged our room so that it could fit two adult beds so that the three of us could sleep together. I can't even express in words how great that was. So tonight we will be in the same bed and tomorrow we will go up to our second home, 9 North with family and friends and take her breathing tube out. Its time for Emily to be at peace. We thank you for your unbelievable support and love. We ask that you please take a moment today and say a prayer for our Emily.
March 28
This is Aunt Christie. Katie asked me to let you all know what is going on. Emily has had a hard week. She was having trouble breathing and has been on oxygen for the past couple of days. Chest x-rays showed that her lungs were clear so it was determined that she might have a little bit of a respiratory infection. Last night her breathing became really difficult so they took her to the ICU to put her on special oxygen treatments. They then noticed that her pupils weren't dilating as they should so they took her to have a CT scan. The scan showed a bleed in her brain. Her ventricles are enlarged as well all of which is causing the breathing problems and other difficulties. I don't know what will be done. We are heading to Boston this afternoon to be with Emily. I will let you know more as soon as I have more information. Please continue to pray for Emily, Katie and Brian.
March 20
We had a hard today. Emily's MRI showed a new 2cm tumor in the posterior fossa and one of the nodules has increased in size. The good news is that her spine was clear and the new growths were localized to the posterior fossa, or the back of her brain. It's good that we had another MRI because had we gone to stem cell with this new disease, stem cell would not have been successful. We don't know what treatment we will be doing next, but the team knows time is critical and a new plan will be put together next week. Needless to say, I will be staying in Boston until we have a new plan in place. Even though today was a setback we still feel hopeful. The tumor is still localized and we have options. We also have the strongest, most courageous little girl and an army of supporters. We thank you all for the love and support and will let you know when we have plan C in place.