Sometimes We Just Don't Know!
Sometimes between the moment we’re born and the moment we pass away we witness something that can't possibly be real. It can't possibly be happening yet it is. Sometimes what’s witnessed is seen by several people at once, sometimes by hundred's but usually by just one of us. Such experiences are not limited to a certain age of a person or geographic location.
Men, women and children have seen things that have been classified into categories based upon one's religious or spiritual beliefs. For example, if one were to say they believe they had seen a ufo, obviously the government is going to state that "It was a weather balloon." Some folks may say it was a hoax or a prank. Some may accuse you of being drunk or on drugs.
Some may it was the work of the devil while other's still may say it was a sign from God. In certain parts of the country, some may say it was witchcraft or part of the paranormal. There are those who believe that this dimension, the world as we perceive it is just one of several. Then there are those who based on all known facts assert that what they encountered could not have been from this earthly world.
And so this is where my story begins and it is left to you, the reader to decide if you believe in the impossible or the possible. My name is Emily and I was just an ordinary divorced, single mother raising my only daughter, Amanda age six on the Kansas farm my father willed to me when he passed away on February 18th, 2005. Daddy and I had always been close.
Amanda was too small to be affected in the way that older children could from the loss of her grandfather and I was glad for that. Now the year was 2007 and Amanda had just turned seven and was not only was she a bright and outgoing child, but she was talkative too. Yet in a way as much as the country life shielded us from pollution and crime like big cities it had its loneliness too.
Not just for me but for my daughter too. So we made sure each and every day that we set aside time for us to listen, to ponder, to learn and to laugh. Little did I know that Amanda would develop a Cancer tumor rare in children and very rare at Amanda's age called Osteogenic Sarcoma. It’s a form of Cancer that develops in or near the plates connecting joints to each other like arms and legs.
In Amanda's case it began just above her right knee. She was prone to falling down a lot as most children do her age when they’re running and playing. It was on May 11, 2006 when she came in the back door crying, telling me that her knee hurt. Like any other mother, I knelt down and hugged her and tried to tell her she was a big girl and that she'd be fine as I gave her one of my hot out of oven oatmeal cookies that had cooled.
But Amanda wasn't fine. In fact, in a few short weeks, I sensed she had changed. As the pain in her knee increased, I saw the sparkle in her eyes dim. I saw her favor the left knee as she began limping. She appeared to get fatigued way too quickly than before. She had fevers and I noticed a swelling just above her right knee. At first, I just wrote it off that she had fallen a bit too hard on her knee.
As a precaution I took her in to see her doctor and x-rays of her leg were taken as well as a physical which all came back normal. His diagnosis was that Amanda may have irritated the bone underneath the knee cap and that it would just take time to heal. He gave me a prescription of medicine for Amanda’s pain and we both went back home.
Two weeks hadn't even gone by when I noticed the small bulge forming just above Amanda's knee and I took her to Emergency room this time. It felt like hours since I had sat down in the waiting room waiting, reading, pacing back and forth as patient after patient came and went. What was taking so long, I impatiently said to myself?
Finally the same nurse who took Amanda out of my arms, returned and when I saw the look in her eyes, I knew something was very wrong. At that moment my heart was racing. I began crying and pleading to know where my daughter was as she tried to calm me down. I was led down a hall to an examination room where a doctor and nurse were keeping Amanda entertained.
When we saw each other we both cried and held our arms out to each other and I ran to her. When I turned around with Amanda in my arms, I looked into sad and concerned eyes. Dr. Blakely informed me that one of the nurses was going to take Amanda to a play area for children nearby while we talked. At first I panicked but in the end, I relented and let Amanda out of my arms.
As Doctor Blakely spoke to me there was kindness and compassion in his voice. He explained to me what he had discovered was bothering Amanda's knee. That was when the Doctor told me Amanda had a child form of Cancer called Osteogenic Sarcoma, a type of bone Cancer rare in children, especially for Amanda age. At that moment I felt my whole world collapsing around me.
How can any parent possibly hold up composure when they learn their child has Cancer? "No, I pleaded with him that there must be a mistake." I cried out but he shook his head no. He stood and held up one x-ray to the light screen on the wall that clearly showed the growing tumor. Between anguished tears, I stuttered the words, "She's going to die isn't she?"
There was a pause, a long pause as I burst out crying "No!" He did his best to reassure me that though this was a Cancer, it didn't necessarily mean Amanda would die. "Can you help save her life?" was all I could form the words to speak. “This is a rare form of Cancer Emily, one for which few, if any hospitals have knowledge or training to treat your daughter.
There’s a Children's Hospital in Texas that specializes in children's Cancers. I believe they’re the best option for you. It’s called the MD Anderson Children's Hospital, located in Houston, Texas." Amanda’s doctor said. As he handed me some pamphlets and some computer print outs of names and phone numbers of the children’s hospital in Texas, I asked the worst scenario question. "What happens if the tumor continues to grow?"
There was a deadly silence at first before I heard his words sound like a far away distant whisper. "Left untreated, her condition will continue and deteriorate. The tumor can “Metastasize” meaning a part of the tumor can break off and can be carried to another part of her body for example, other bones, kidneys, adrenal gland, brain or her heart.
The tumor will interfere with her ability to walk and she’ll begin to lose weight. Her muscles in her right leg will become smaller. While amputation is possible, medically we try not to take the leg of any child. The information I had printed out for you explain treatment options such as chemotherapy, radiation, surgery and a brand new vaccine they’re trying out for this form of Cancer, but not in our county.
You should take her as soon as possible to the Children’s Cancer center in Houston Emily" he told me. I was numb. Unbelievably numb. No one in my entire family had ever had Cancer! I gathered up the papers and put them in my purse hurriedly. "Can I get my daughter and go home Dr. Blakely?" I asked. He gave his best smile under the circumstances and said “Yes” as he picked up the phone.
In a few moments Amanda and her nurse came in the examination room and she held out her arms to me laughing as I knelt down and took her in my arms. I was grateful she wasn't crying or frightened and at that moment I was scared to death to find the words to explain to her what was wrong with her leg. Somehow the doctor must have read my mind.
Just as we were about to leave he touched my arm and whispered, "The folks down in Texas will explain everything to you and Amanda wonderfully and she can handle it I’m sure of that Emily." he told me. All the way home I could feel myself trembling and fighting back tears. I expected at some point that I’d have to bring up the word Cancer to Amanda sooner or later but I was wrong.
It was Amanda who spoke first. "Momma will they make my Cancer go away?” she ask in a worried voice. Those words stunned me as we sat one evening watching a Shirley Temple movie together in my rocking chair. The subject was open now and I did my best to explain to a child so young what was wrong with her leg and what we were going to do to make it better. I asked her if she was afraid.
What she told me was something I had never expected her to say. "I'm not afraid momma, I just want the pain to go away so I can run and play again." she said it with such an innocent voice that I burst out crying. It wasn’t a week later that I had all of Amanda’s medical records and x-rays forwarded to Houston Children’s Hospital. Then I packed up all of our belongings, sold my SUV and relocated us to Houston.
Like any loving parent I would and was going to do everything within my power to save my daughter’s life. Before leaving town, I signed all the necessary papers for a real estate agent to handle the sale of the farm daddy had passed on to me. I knew he would have approved my decision to sell the farm even though it made me feel guilty.
Through the help of an ombudsman at the children’s hospital, a small furnished two bedroom apartment was obtained close to the hospital. The first scheduled appointment at the MD Anderson Children's Hospital was with Dr. Sara Montgomery, an expert in the field of Osteogenic Sarcoma. It was a time of compassion, education and hugs at that moment.
Dr. Montgomery found it very unusual for a child of Amanda’s age to be diagnosed with her particular type of Cancer. She couldn’t tell me if it was hereditary or if Amanda had repeatedly fell on that knee, perhaps triggering the malignancy near the growth plate. Whatever the reason, I was determined to save my daughter’s life. At the hospital they provide an area where all those with Cancer can play together when possible.
I was told they try very hard to help the children not only cope with their conditions but also with the side effects of their treatments. When I asked Amanda if she would like to meet some other children that were also at this hospital, she was ecstatic to introduce herself. A nurse became our guide through the hallways of lefts and rights that would make any normal person feel lost.
But the long blonde haired nurse, who was to be my first friend, told me a secret. “Don’t let this hospital make you feel like you’ll get lost. Look at the floor.” she said with laughter. As I looked down, I saw three stripes each with a different color. “Because our patients and their families must travel to specific parts of the hospital, we’ve made that journey easier. Red will always lead you to X-rays.
Yellow will lead you to Chemo and other treatment options, and Green will lead every child to where they will find their friends.” she said. The kindness in her voice touched me so deeply I began to cry. But I wiped my tears away quickly and Amanda and I followed Mary. When we reached a door covered with drawings of balloons, bears and rainbows, I read the plaque on the door that said, “Let’s Be Friends!”
Through the door window I could see a room full of smiles and laughter. I saw children with bald heads, bandages, wheel chairs, and even two children with I-V bottles in their arms but they all had smiles. In this room they could leave their fears, pain and sadness behind and have fun. As Mary opened the door, the laughter and giggles jumped into the hallway to greet us.
Amanda was the first to go inside followed by Mary and myself. For just three seconds it seemed like everyone had been frozen in time as everyone looked in our direction and then it was just like we had never entered. I had never really thought much about children getting Cancer. There were 17 children in the room with ages ranging from 3 to maybe 14 I guessed.
There were eight tables with activities to participate in as well as coloring boards and four nursing assistants monitoring everyone. While I was introduced to each one and told what a normal day consisted of in the activity room, I was surprised to learn that the activity room was open 24 hours a day.
I was told due to the illnesses and treatments for each child, often times they were unable to sleep or were in pain. Rather than confine them to their bed, when possible they were allowed to come here. It was good therapy for children and provided each child with friendship and companionship. I hadn’t noticed the little green eyed girl who now was holding Amanda’s hand as they walked around the room as she introduced Amanda to the other children.
“Tina appointed herself the one who welcomes every new child into this room. She’s been at this hospital the longest and her Cancer has been in remission long enough we hope we can let her go back home to be monitored.” Mary told me. Her voice sounded relieved that she one day would get to leave the hospital. “The doctor’s and the treatments we offer children who come to us are state of the art and new discoveries or advancements never cease to amaze me.” she told me.
Then she suddenly stopped talking and she took a deep breath and continued. “But…” and I saw tears form in her eyes, “We can’t always save them and God calls them home. Emily, I know you’re worried, maybe scared to death but I mean it when I tell you we’ll do everything we can to make Amanda Cancer free.” she said as she turned and hugged me. As she gave me a hug, I know she felt my tears fall upon her shoulder. “It’s okay to cry Emily; there will be many times when you’ll cry.
For all of us who care and come to love each of these children as if they are our very own, we will cry too. Just keep in mind that our success and survival rate for your daughter’s particular Cancer is very high.” she told me with optimism. That first day at the hospital was the first of three long and oh so tiring days of what’s called “Orientation.”
A time for being handed piles of forms and material to read, accompanied with smiles and handshakes. By the end of the day I was dead on my feet. Amanda was asleep in my arms as I turned the key in the lock and sat down in what was our new home. What a difference there was between the home we left behind and this small two bedroom apartment.
Boxes were piled everywhere by the moving van men. The walls were bare. But oh, how good it felt to sit down on my couch and later rock my baby in my rocking chair as she slept. Amanda was scheduled to be admitted into the hospital within 48 hours. I was to use that time to talk with Amanda and explain to her where she would be sleeping each night and why.
I also wanted to use that time to reassure her that I would spend as much time as I could with her each day. I told her when she felt like talking on the phone that there was a phone beside her bed. I also told her that there would be a couch in her room where I would be allowed to sleep over when possible. I think that under any other circumstances Amanda might not have adjusted to the big changes coming into her life.
First Cancer, then up and moving and now having to stay in the hospital. But the children in that activity room were the ones who said so much in so little time. They shared little parts of their illness and treatments while at the hospital with her. In their few words they sort of showed her that the road ahead of her was gonna make her cry, make her angry and make her want her momma to hold her all night long.
But they also passed on to her that they were getting better and that they understood that it was gonna hurt to make the bad things in them go away. I brought what I could of Amanda’s to her hospital room. Starting with day 1, Amanda had x-rays taken, bone scans and what they call Magnetic Resonance Imaging or MRI for short!
She also had a blood count, a cat scan and a biopsy of her tumor. These were all necessary Dr. Montgomery told me because they needed a baseline of where Amanda was with her Cancer. From that point they would consult with other experts in the field, look at past patients with similar conditions and what they did to treat them and how affective those treatments were.
As months passed, Amanda had her eighth birthday and she celebrated it in the activity room with her many friends. To Amanda’s delight and mine, a special friendship bond was made between “Tina and Amanda.” They seemed drawn to each other and spent as much time as possible with each other. During those months I watched Amanda suffer and it broke heart.
Amanda’s Cancer was progressing rather aggressively as I was told that it might. If the Cancer spread through her body to other locations it would be harder to stop. There were many factor’s Dr. Montgomery explained to me that would decide what course of treatment was best for Amanda. One of the biggest factors was Amanda’s tolerance level for specific medications, procedures or therapies.
How far the Cancer traveled or progressed was equally important. Whether or not the tumor had metastasized would be a crossroads for treatment or therapy options. Some of the options explained to me were radiation, chemotherapy, amputation of her leg, surgery and antibiotics. Upon hearing those options I broke down and put my hands in my lap and cried until no more tears would flow.
I knew without asking Dr. Montgomery that even if everything went fine and her Cancer went into remission there was a chance of it coming back. I had read that in one of the information sheets they had handed me on the first day of orientation. But Dr. Montgomery knew of my pain, the pain in my heart and mind. Her own daughter had been diagnosed with Leukemia seven years earlier and her child passed away in this very hospital.
I also learned that children can suffer from many different types of Cancer. Some of those Cancers are Wilms Tumor which affects their kidneys, Neuroblastoma which is a tumor in the abdomen and Retinoblastoma which is an eye Cancer. Rhabdomyosarcoma is a soft tissue Cancer, a Cancer affecting the central nervous system, Bone Cancer, Osteosarcoma and Ewing Sarcoma both of which are Bone Cancers, Hodgkin Lymphoma and Non Hodgkin Lymphoma which attacks the Lymphoid tissue.
Dr. Montgomery told me they treat all of those types of Cancers at this hospital and that each child and their Cancer are as unique as the treatment given to them. Over the months to follow at times I had to hold my daughter as she begged me with tear filled eyes to take her home. I admit there were moments when I felt like taking her out of the hospital to stop her from suffering through the gauntlet of never ending treatments.
There were times when I would be called to meet with the doctor to hear “Good news” and other times when I heard “Bad news.” Through it all I found myself both clinging to my Bible and prayers and “Shouting at God” for him letting my child suffer this way. What tugged at my heart and at my soul and gave me a tiny bit of hope was hearing news that a child’s Cancer had finally been put in remission.