Our family was out of town when we found a lump on our youngest daughter’s back. Miranda was 3 years old.

Her daddy picked her up, and she started crying inconsolably. She said it hurt to breathe and her back hurt. So we lifted her shirt and just under her right shoulder blade was a lump; it looked like someone had slid their little finger under her skin.

We could only look at each other.

A trip to the ER led to a baffled doctor who instructed us to follow up with our pediatrician when we returned home. When we left the ER, Miranda was feeling better, calmer, and the ER doctor didn’t think it was anything serious. Our pediatrician, however, scheduled Miranda for an ultrasound of the lump, which led to a chest X-ray and CAT scan. These tests showed that something was in Miranda’s body that shouldn’t be, so a biopsy was scheduled. Before the day of the biopsy, Miranda got a fever over 104 and started vomiting. The pediatrician decided that with the unknown of the lump and now a high fever and vomiting, Miranda should be hospitalized.

Never in my life did I think I would have a child battling cancer. That kind of thing happened to other people.

I had about a week to start getting used to the idea as the tests were run and the words “mass” and “tumor” were used. I didn’t know how to react. Should I be angry, bitter, depressed and hopeless, or determined, strong, encouraging and hopeful? The day before the official diagnosis, the doctors stopped by to update us on the tests. By this point – even though no one had said the word “cancer” – we knew Miranda had it. We were told that based on the location and how the tumor was presenting that it was either Rhabdomyosarcoma or Ewing’s sarcoma. I had never heard of either one.

The next day, I was alone in Miranda’s hospital room as she slept. I remember it like it was yesterday; it was a Thursday, mid afternoon, partly cloudy. I hadn’t left the hospital room in almost a week … and the oncologist walked in. I braced myself. Miranda had Ewing’s sarcoma of the soft tissue of the chest wall. Put simply, she had a type of cancer that only children get, and it was located just under her rib cage. During the next few days, I learned that Ewing’s sarcoma is typically found in the bones. The year before Miranda’s diagnosis, there were 226 cases in the United States – it is a rare childhood cancer caused when parts of the 11 and 22 chromosomes break off and basically swap places with each other.

It is not known why this happens, and it is not inherited. I also learned that cancer in children is very different than cancer in adults. While children can get the types of cancers that adults get, it is very rare. There are about a dozen different types of cancers that only children get that are lumped together and called childhood cancers. The most common childhood cancer is leukemia. Cancers of the central nervous system and neuroblastoma are the next most common.

My daughter has cancer.

For the first month of Miranda’s treatment she was in the hospital. The view from her room was the side of the Ingram Cancer Center building, more specifically, the word “Cancer.” Day after day, I saw that word staring at me like an ugly monster, which is exactly what I think cancer is. Sometimes, when Miranda was sleeping and the room was quiet, my mind would wander, and I would imagine the worst. When that happened, I couldn’t keep all my emotions in check and the tears didn’t want to stop. I went through denial: this couldn’t be happening to my child. Then the reality sank in. I cried until there was nothing left.
I became determined to do everything I could to help my daughter survive cancer.

Miranda’s oncologist informed us about treatments and what to expect. She would get six rounds of chemo, then, if the tumor shrunk enough, she would have surgery to remove it and then an additional eight more rounds of chemo. Each round would start two weeks from the start of the last round, if Miranda’s blood counts had recovered.

I thought chemo was a drug, one drug. I didn’t realize there are different types of chemo. Each has its own way of attacking cells, thus different types of cancer are treated with different types of chemo. Chemo targets rapidly growing cells. Cancer is really just cell growth gone crazy which is why chemo kills it. Unfortunately, hair, bone marrow and the lining of the digestive system are also made of rapidly growing cells. Since chemo can’t tell the difference, it kills them all. It also kills other healthy cells in the body because it can’t tell those from cancer either.

Miranda would get five different types of chemo during her treatment. She would lose her hair, vomit, lose weight, become infertile, have no immune system, be given drugs to counteract the effects of chemo, develop ulcers throughout her digestive system – those were just the most common side effects. Miranda would be admitted to the hospital for two to five days for each round. She had a special tube, a “central line” surgically put in. It went into a large vein in her chest and remained there throughout her treatment.

Part of the tube would be accessible for administering chemo, fluids and other medications as needed. If the cancer responded, the whole process would take eight months to a year, and during that time she couldn’t be around other children, in large crowds, in contact with anyone who could even possibly be sick. Depending on her blood counts, she couldn’t even eat fresh fruits or vegetables because of the bacteria. That was a lot for me to take in at one time.

Miranda took the whole thing in stride.

She was only 3, and the only question she asked was when she could go to preschool. She accepted that she was sick and would need medicine at the hospital to make her better. After talking with other moms of young children, I realized that their children just accept it, too; they don’t know life is supposed to be different. I didn’t have to deal with some of the questions my new friends had to answer. I know a mom whose 7-year-old asked if she was going to die. I met one remarkable 13-year-old boy who also had Ewing’s and got to know him. His treatment wasn’t working while Miranda’s was. He looked at me and asked, “Why can’t it work for me?” As hard as that was for me to answer, I can’t imagine what I would have felt like if he had been my child.

Miranda has three older sisters. It was hard to tell them that Miranda had cancer. They asked more questions, but never anything too emotional or tough to answer. They asked about how long she would be in the hospital, when could she come home and why did Mommy always have to be at the hospital. As much as they understood that Miranda was very sick, they still wanted and needed Mommy to be with them. We made an appointment for them to meet with a child-life specialist who would help them understand more. They were given homework assignments like writing down questions they had about what was going on with Miranda. They were also given a doll to color with markers. We signed them up for a program called SuperSibs. Every couple of months, SuperSibs sent a small gift to each of Miranda’s sisters. They received trophies, pillow cases, posters and books. It was a tough time for them. For the most part they handled it great, but there were moments of tears and frustration that life was so different than what they were used to.

The relationship with my husband was tough. When we were together it was usually at the hospital. We actually were like two ships passing in the night. One of us was coming while the other was going. We did have a few dinners together, you know, the nice romantic kind, eaten off TV trays in a hospital room while our little girl slept. Our conversations became about only what was necessary in the moment.

The most beautiful little girl I have ever seen.

As Miranda’s hair started to fall out, we told her we could cut it really short because it was getting everywhere. She would wake up with hair all over her face. Miranda’s reply in a bit of a grumpy voice was, “Just let it fall out.” So that is what we did. I brushed it at least a dozen times a day. The nurses helped me cover all her tubes and we put her in the tub. I washed her hair and cried as it covered my hands coming out with the scrubbing. When I was done she was almost completely bald. I thought she was the most beautiful little girl I had ever seen.

As the days went by, we started to adjust to our new life in the hospital. I went home as often as I could. It was a constant juggle between hospital (which I sometime found myself calling “hotel”), home, three other daughters, my husband and a little time for myself. I felt like I wasn’t there enough for anyone else, and that I was letting my healthy children and my husband down. Friendships were hard to maintain. I found out who were true friends. I could call them up and say Miranda is asking for Chick-fil-A, is there any way you could bring her some. Most of my friends couldn’t even begin to relate to what I was going through and didn’t know what to say, so some of them stopped talking to me altogether. Maybe they couldn’t handle the thought that instead of Miranda it could have been their child with cancer. As news of Miranda’s diagnosis spread throughout our church and neighborhood, we had lots of visitors.

The first month or so there were days that one person would leave and another would show up. Meals were cooked and delivered to both home and hospital. As the months passed, the visitors and meals came less frequently. While we didn’t always need meals, visitors occasionally were nice. But there were times that Miranda was so sick I couldn’t visit with the people who did come. We created a Web site on caringbridge.org to share news with family and friends. Through that site, we met people from all across the country who were going through the same thing we were. Other cancer moms understood why I ate Oreos for dinner, didn’t get to brush my teeth some days, didn’t even know where my makeup was and lived in comfortable clothes and slippers.

Miranda got so sick and lost so much weight. We tried feeding her through the nose, but she kept vomiting the tube out. We became Miranda’s advocates. We signed consent forms to poison our daughter in order to make her better, but in the process knowing that it could damage other organs in her growing body.

December came and while others prepared for Christmas, we prepared for surgery. Four days before Christmas, the surgeon removed the tumor and put in a g-tube to feed Miranda directly into her stomach, no more tubes down the nose. After surgery, Miranda was a completely different patient, only admitted to the hospital for chemo. With the g-tube giving her nutrition and the tumor gone, Miranda gained weight. The next four months we spent more time at home than in the hospital.

The end of chemo brought an unexpected fear for me. Without chemo would the cancer return? I couldn’t believe how scary it was to be stopping treatment. Miranda was thrilled; she celebrated her fourth birthday free from chemo and tubes. We threw a big party, fit for a princess. It was not just the celebration of another year; it was the celebration of the defeat of cancer. Miranda had won the fight!

Tiffany Beamer is a local mother, active in the fight to end childhood cancer.

gold ribbons for awareness!

We all know that pink is the color for breast cancer awareness, but chances are you don’t know that gold is the color for childhood cancer awareness. Cancer is the number one cause of death by disease in children, yet drug companies say it isn’t profitable to research new drugs to cure cancer in children. The government says there aren’t enough cases to give any substantial amount of money to research. But certain types of childhood cancers don’t have a cure, and one in 300 children will be diagnosed with cancer before age 20. Each year, 3,000 children die, and 35,000 – 40,000 are in treatment. In order to raise funding for childhood cancers, awareness has to come first.

Visit the following sites to find out what you can do in the march to bring awareness to the need for childhood cancer funding:

candlelighters.org

Their mission is to provide information and awareness for children and adolescents with cancer and their families, to advocate for their needs and to support research. They are strong advocates for their families in Washington D.C., they produce the highest quality materials on childhood cancer, and they have more than 40 local affiliate organizations across the country that provide direct services to the families in their communities.

curesearch.org

They are dedicated to raising private funds for childhood cancer research for the Children’s Oncology Group, the world’s largest cooperative cancer research organization. Both are partners in the search to cure childhood cancer, each with vital responsibilities concerning research, care, public awareness and fundraising.

cancer.gov

The National Cancer Institute conducts research on cancer and provides cancer-related information on treatment, side effects, screening and testing, prevention, statistics and more.

petitionsite.com/1/CureChildhoodCancer

A petition drive to push this issue into mainstream media attention. By signing the petition you are agreeing to increased government spending for research, full funding of the Carolyn Pryce Walker Conquer Act and promoting a major media event/TV special to raise awareness.

stbaldricks.org

The world’s largest volunteer-driven fundraising program whose goal is to raise awareness and funds to cure childhood cancer by supporting cancer research and fellowships.

The journies

Parent Essays from the Heart

“Lily has leukemia …”

Sometimes the shortest sentences are the ones that change our lives the most. “I love you,” “I do,” “I’m pregnant!” are examples of life-changing phrases that most people experience. However, the short sentence that changed my life the most was the one my husband and I heard at midnight on December 1, 2008: “Lily has leukemia.” Lily, our daughter, was 7 years old at the time, and that three-word sentence changed our lives forever. With those words, we entered the world of childhood cancer.’

The world of childhood cancer is like riding a roller coaster in the dark. You’re put on the roller coaster – ready or not. The ride starts with very steep hills and lots of twists and turns. It’s dark, and you never know what you might encounter next. Sometimes the ride smooths out, and you start feeling more confident and in control and suddenly, BAM! There’s another drop. You know the feeling in the pit of your stomach when you drop unexpectedly? It doesn’t take much for that drop to happen – a slight fever, a scraped knee, a flu bug – and we’re reminded that we aren’t in control – that things change in the blink of an eye. However, we dream and pray for the moments when the ride is smooth and even. Eventually we hope there will be less hills and more smooth rides. However, because it is dark, you never really know what is ahead, and the memory of the hills is so vivid.

The roller coaster ride of cancer has changed me as a mother. I now know a deeply wrenching fear for my child’s life. It’s not the intangible “what if” fear that most parents experience. It’s the very real fear of personally knowing other kids with the same leukemia that Lily has who died due to the cancer or an infection their bodies couldn’t fight.

I have learned to appreciate the normal in life – the simple times: just listening to my girls laugh and even argue; nights at home with nothing planned; when Lily’s friends just treat her like another third grader and friend; her smile and laugh; simply going to school. I cry with joy when she skips or runs – two things she couldn’t do because of chemo a couple months ago. I take time to simply savor what is most important – my family.
– Larisa Hensiek, Lily’s mom

Unyielding Determination

Shock, devastation, confusion and fear overcame our minds, bodies and souls. How? How could we go from being elated parents of five children one minute to wondering in the next minute if our barely 4-year- old son would even be alive in a few months? How would we be able to help him understand all the procedures and poisonous medicines that he would endure during the coming months and years? How would we explain to him that the life he knew was gone and that we must adapt to a new “normal” to give him his best chance to survive? How would we explain all of this to our other four children, that their lives had also been drastically changed with those four emotionally powerful words … “Your child has cancer?”

In July 2007, our family prepared for the battle. Surrounded by our five precious children, we attempted to explain the grueling path ahead. We conversed about Kambryn losing his hair, how the port-a-cath would look on his chest, how the medicines would make him sick, how Mommy would not be present for all their functions, how Kambryn would spend time in the hospital, how germs could make him sick, so we would need to practice strict hand-washing rules, and how there would be some activities they would have to give up until treatment was over. We all agreed we would battle this uninvited disease together, and we would win.

Desiring to have seven healthy family members at the end of treatment, we changed our daily routine and embraced an entirely new lifestyle. We participated in safe, outdoor activities with four of our children playing soccer, and we purchased a travel trailer to continue our love of travel since Kambryn can no longer stay in hotels. We were forced to turn inward, yet we continued to be surrounded by a multitude of prayer warriors including family, friends and strangers, an Internet support group that educated us on leukemia issues, and an abundance of new friends at the oncology clinic. Only positive thoughts abounded regarding Kambryn’s healing. Life has certainly been different, but we cannot say it has been all grim. Kambryn will complete his treatment in one year, and we believe we will achieve that personal family goal of … seven healthy family members.

– Seth and Lisa Lowrey