That year the girls were with their dad over Easter so Hubby and I grabbed a few friends and headed to The Dunes for a weekend camping trip. We wouldn't take the girls to that particular place over Easter because it is very rowdy with the younger crowd and due to the high intensity parties that tend to take place at the base of Sand Mountain, it is not a safe place for little girls. In fact, it wasn't exactly safe for us either but we survived and had a reasonably good time. As we were driving home, I got a phone call from my oldest sister, Michele. She was crying and asked me if I had heard about Lily. Anyone who knows me will tell you that I am a first rate panic veteran. My stomach immediately clenched and I asked Michele to tell me what was wrong. What she said to me that day changed my life forever... it had already changed the lives of my dearest loved ones forever.. I was just catching up.
Lily was at Primary Children's Hospital in SLC and had just been diagnosed with Leukemia the night before. Although I didn't know the complete details of Leukemia then, I knew it was cancer, and I knew it was bad. I was three hours away from home and I sobbed the entire way. As soon as I was home, I showered and put on some clean, non-camping clothes.. I was going to PCMC and no one could stop me. I did go to a specialty store first to pick up a blankie for Lily... I had spent enough time at PCMC with my Linzie to know that blankies are a wonderful comfort to little girls who are scared and uncertain about what is going on around them. I will never forget walking into that room... after going through a very thorough scrubbing just inside the unit first. There was my favorite sister and her little girl, both curled up on the bed, both looking impossibly small. One look at Missy's red, bloodshot eyes told me the entire story. Her mother's heart was breaking and there was nothing I could do about it but love them both.
The story of Lily's battle with Leukemia is a long one, fraught with many fears and laced with more tears than I could ever describe. But it is also a story of hope and a wonderful portrait of survival because today Lily is cancer free. Yay! But I still think about that phone call from Michele.. every year as we prepare for our camping trip... nothing prepares you for that kind of devastating news. There are no answers for the millions of "whys" that we asked over and over... but there can be happy endings. Oh yes there can!
Lily is a one of a kind girl who is supported by a remarkable mother, siblings and even extended family. There's more to her story than any of us will ever know.. only her mother knows the true depth of it all. But there's someone else who has a heart-wrenching perspective on cancer and what it is like to be surrounded by something so big and uncertain... that would be Lily's older sister, Ella.
Ella is easily one of my favorite people on the planet! She is incredibly smart, loving and kind.. and she survived a harrowing medical emergency herself when she was just three years old. I know, right? Can you even imagine what her mother has endured over the years? Last fall, Ella wrote her story about what it was like for her when Lily was diagnosed and went through treatment for Leukemia. Ella then entered that story in a contest that started on a school level, then went to a district level, then regionals, then state, and now is in the national part of the competition. It is no surprise to me that Ella won every level of this competition so far because, I don't care who you are, her story will break your heart. We are now waiting to hear how she does in the national competition.. Please read her story below and wish her luck. She is truly an amazing young woman who comes from an equally amazing family!
Ella's Reflections Essay 2010 -
"Together We Can..."
Lily was three years old when she was diagnosed with Leukemia. Her three-year treatment included steroids and chemotherapy and more pills and medicines than I can count or remember. Thinking about those years and browsing my memories of them is still really hard, as I've never been as scared or uncertain as I was then. Yet, those years taught me a valuable lesson about families and loved ones which I will never forget. I learned that a family becomes stronger through trials, and that in working together we can make it through anything.
Our world changed the day before Easter in 2007. Like most families who share everything, we had all been down with the flu virus several weeks before that, and Lily just never seemed to get over it. My mom had taken her back to the doctor and a blood test confirmed that something was very wrong. My mom told me that Lily's immune system wasn't working and that she had to go to the hospital. I didn't know what that meant, but I was scared. My mom hugged me and told me it would be okay, but she was crying and the house was full of family. My grandmas were packing an overnight bag for me and my baby brother and I knew that for us to be apart on Easter morning meant that something bad was happening. Before I could ask too many questions, my little brother and I were packed into my grandma's car and pulling away from my house and my family. I knew my parents were taking Lily to a hospital and that I couldn't go, but I didn't want to be away from them.
I remember watching my Aunt Daphne and Grandma Jill that night. Their eyes and noses were red from crying, but they were trying so hard to make me happy. All of my cousins were there and Daphne was organizing games and being silly to make us laugh. Grandma Jill always has lots of hugs for her grandkids, but I got extra hugs that night. I knew she was keeping an eye on me to make sure I felt safe and loved. They both worked so hard all night to make me smile and get me excited for the Easter Bunny's visit in the morning. I remember waking up in the morning and finding my basket. I played with my cousins and forgot for just a few minutes that everything was turned upside down. When Grandma Jill said we were going to see Lily in the hospital, I scrambled to get dressed. I couldn't wait to see her and make sure she was okay.
When we got to the hospital, I could tell my mom had been crying. She hugged me tight, told me she loved me, and asked me all about my Easter basket. When I finally got to sit on Lily's bed and chat with her I noticed right away that she already looked so much better than she had the day before. My mom told me that Lily had a blood transfusion the night before and it helped her feel better. After going through all of our Easter goodies, Lily and I got to have a bubble gun shootout with baby Jack looking on and laughing at us. Our little family was cramped into a hospital room and Lily was hooked up to all kinds of monitors and machines, but everything felt better because we were together; It was hard to leave. As my mom zipped up my jacket, she explained that Lily was very sick and would have to be in the hospital for some time. Before I could even ask, she told me that I was going to be staying with my cousins. My aunt Daphne wanted to have me over for one long sleepover.
Over the next few weeks, my parents lived at the hospital with Lily. Jack and I were spending all of our time with grandmas, aunts, and cousins, who went out of their way to make us happy. We spent hours making posters, cards, and presents for Lily. The highlight of those days was when my Grandma or aunts would pack up all of our treasures for Lily and drive me and Jack the 45 minutes to visit her in the hospital. Our visits were short, but it was the only time my family got to spend together. I was so grateful that we had loved ones willing to take care of me and Jack and drive us all the way to the hospital.
Once Lily came home we were together again, but things were different. She had no immune system, and anyone who visited had to wear a mask. My mom started keeping hand sanitizer at the front door, and no one could come inside without using it first. I remember my Grandpa picking me up every morning and driving me to school. Those ten minutes were the best, as we talked about my teacher and my class and everything that was going on with me. He would also pick me up after school and we would pick right up where we left off on the conversation.
Dinner was always a lot of fun during those first few months. Our freezer and fridge were full of tasty dinners that all of our family and friends would make and bring over. My mom is a good cook, but it was fun to try out new things and find new favorites. Dinner was also the only time we all got to slow down and sit together and reconnect. My mom didn't have to make the meals, so she actually got to sit and visit with us. It was the only hour out of the day where we were all together and peaceful. I loved every minute of those dinners, and thinking about that time helped me get through the really difficult times of Lily's treatment. One night, while we were eating, we all noticed that Lily's hair was falling out faster and faster. She couldn't eat her dinner without strands of her baby hair falling onto her plate. After dinner, my mom held Lily while my dad shaved her head. I remember hiding under the table and crying because Lily was crying and I felt so bad for her. Afterwards we all hugged each other on the couch and cried.
Because Lily was so sick, she couldn't go to school or daycare. That meant one of my parents had to stay home from work and take care of her. I know my parents agonized over this. Money was already tight, and living on one income was going to make things so much more difficult. While they worried over this and tried to figure things out, our family once again came to the rescue. Over the next six months, they organized several fundraisers and established a donation account to care for Lily's medical expenses. I remember my mom crying and saying she just couldn't find words to express how grateful and humbled she was by how generous and kind everyone was. Friends that my mom hadn't seen in years would call or show up on door with food. People we had never met, as far away as New Zealand, would send presents for me and Lily and Jack. My mom's friend, Todd, who was also battling cancer, donated hundreds of dollars for Lily's medical expenses. I was only nine years old, but even at that age I could feel the outpouring of love from everyone.
One year after Lily was diagnosed, my family was asked to attend and participate in the Relay for Life. The relay is a fundraiser and all of the money raised goes to cancer research. Lily was the poster child for that year’s event, and everywhere we went we saw pictures of her hugging her favorite stuffed animal, and wearing a pink scarf on her bald, little head. As Lily’s spokesperson, my mom was asked to speak to the crowd of supporters that day. I remember my mom thanking everyone for coming and saying that because of the generosity of people like those in the audience, some day maybe we wouldn’t need the relay at all. Maybe someday we would find a cure for the disease that takes so many of our loved ones away. As the sun went down that day, thousands of luminaries were lit and placed around the track. One of those luminaries had Lily’s name on it, and my mom lit one for Todd. We climbed to the top of a hill and looked down on the track in awe of the beauty of the thousands of flickering lights, each one representing someone who was or had fought cancer
There are many different campaigns for cancer awareness, and most of them have very similar slogans. Slogans like, “Together we can find a cure,” or “Together we can make a difference.” Our family had a slogan too. For three years we all wore dog tag necklaces with a black and white picture of Lily and the slogan, “We are in this together.
In July of 2009 Lily finally had her last chemo treatment, and she has been in remission ever since. During the three years of Lily’s treatment I learned some very important lessons. Looking back, I can’t say that I ever felt like everything would be okay, but I always knew that no matter what happened my family, all of my family, and my friends would be there for me. I came to understand that together we can make the best of the most difficult times. Together we can make it through anything.
No comments:
Post a Comment