The Doctors gave her eight weeks to live. God had other plans. Her story touched hearts of thousands of people. People turned to Christ in faith. This is the story of my Granddaughter Emmy’s journey. A Journey To Heaven
Tammy Brodowski Mott
I noticed Emmy’s left eye had turned inward. She was unable to use her muscle to move her eye in any direction except inward. Her walking seemed to be different. Her balance seemed to be off and she was falling a lot. She also seemed to be slightly drooling. Emmy was posturing her left hand as if it were arthritic. I had her squeeze my fingers. There was significant weakness on the left side compared to the right side of her body. She was like a person that had a stroke. I took her to our pediatrician. They consulted with the neurological department at Children’s Hospital in Pittsburgh. They agreed she needed an MRI. Due to the scheduling wait time, they suggested we bring her to Pittsburgh though the emergency room.
We arrived at the emergency room at 5 PM. I had packed an overnight bag just in case. I described to them the different signs and symptoms I had seen that day. The staff seemed to exhibit a sense of urgency, an urgency I hadn’t felt until that moment. The ER was extremely busy. The frowns on their faces with their wrinkled up foreheads indicated we needed to get Emmy to the ER right away. ER intake staff rushed to the phones to make emergency calls. Then they rushed Emmy to an examining room while others returned to the waiting area. Doctors and nurses immediately began their examination. I hadn’t processed until now that something could be seriously wrong. We waited anxiously while another emergency took priority each time Emmy was next.
The doctors decided to conduct a CT scan instead while they waited for the MRI to become available. Emmy was so scared. I kept telling her that the CT scan was just like all the pictures that I take of her, but with a big camera. She just had to sit very, very still for a minute or two and then it would be over.
She loved the undersea adventure decorations of the CT room. There were fish and aquatic life everywhere, even on the big camera. Emmy was a trooper, so brave. Her eyes were wide as they expressed how terrified she felt. However, she smiled and giggled while saying, “Me ok Mommy.” I held her hand and sang her favorite nursery rhyme “Baby Mine” from Dumbo until the CT was over. We anxiously waited for the CT scan results. I could tell by the doctor’s face, as she came toward me, that something was wrong. She said, “Mrs. Mott THERE IS A MASS IN EMMY’S HEAD.” We need an MRI for more information. She kept talking, but all I could hear was her repeating THERE IS A MASS IN EMMY’S HEAD. She kept mentioning that a team of physicians would review the MRI results as soon as it is completed. Part of the team would be Neurological Oncology. Wait a minute, I thought, Neurological Oncology. Do they think this mass is cancerous? How could this be? We came here to have an MRI rule out any serious issues. I asked the question I was afraid to ask, “Are you thinking this mass is cancerous?” “Yes, I am so sorry.” was her reply.
I immediately called my husband Dennis. I couldn’t give him any information other than THERE IS A MASS IN EMMY’S HEAD that the doctors think might be cancerous. She needed to have an MRI. Denny was in shock. He fought to hold back the tears. He had so many questions for which I did not yet have answers. It was so hard for him to be at home while we were at the hospital. My mom came with me to the hospital so Denny could stay home and take care of our boys. Never did we think this was what the doctors would tell us.
The first year of our marriage Denny had a mass on his right hip. He went in for a biopsy. He then was asked to come into the office with me so that we “could talk” which was code for we have bad news. They told us that Denny had a rare, very aggressive cancer, a peripheral nerve sheath tumor. Immediate removal was necessary. After a course of radiation, Denny remained cancer free.
Ok, as hard as this may be, I accept this. What do we do now to treat Emmy? The MRI was the next crucial step to determine exactly what we were dealing with. It was 11:30 pm and too late for an MRI. They admitted Emmy to a room for the night. The nurse asked me, “Is there anything else you need?” What a loaded question, I thought. Did she really want to know what I needed? I needed for all of this to be over. I needed my little girl to be fine. I needed us to be home in our beds sleeping. I needed some answers to what was happening.
“Try to get some rest,” she said. They have scheduled the MRI for 1pm tomorrow.” Emmy would not be able to eat or drink anything until it was completed. I knew she was going to be miserable waiting. How could I sleep? I stayed up most of the night watching her sleep amongst the beeps and noises from all the attached machines. Every time I heard her little voice say “Mommy, come sleep with me,” I would move from my bed on the floor to her hospital bed.
Nurses rushing to get Emmy awoke us in the morning. There had been a cancellation. Emmy could go at 7 am. Thank you God, we are finally moving forward towards answers, I thought.
A young doctor came into the room. He looked exhausted. He had been on call for neurology all night. He seemed so young. He had brushed back his sandy blonde hair. I remember he was wearing cowboy boots. They were brown leather and worn like a favorite pair of comfortable trusty reliables. I thought that wearing cowboy boots to work was unusual for a doctor. He asked me if I knew what was happening. Did I have any questions? I asked question after question. Was this cancerous? What kind of cancer? What were our treatment options? Did she need chemo? What were the survival rates? He said he just wasn’t sure until he sees the completed MRI. He walked us down the hall towards imaging and said, “I will talk with you when you get back.”
Emmy was so scared. She came out of anesthesia disoriented. She did not like the blood pressure cuff or oxygen indicator. “Mommy, me want to go home.” “Mommy, me want to go home.” “I know baby, I said. I want to go home too. You have been so brave. We can’t go home until we talk with the doctors. We will go back to your room soon and you can watch TV and rest.” We waited for what seemed like forever. We watched a Winnie the Pooh movie and ordered sandwiches, broccoli and fruit. Emmy ate all her food. Mom and I didn’t feel like eating. Finally, a team of physicians, nurse practitioners, and social workers came into the room. They asked me all the same questions I had answered the day before. Again I told them our story.
The head doctor was Dr. Jakacki. “Is your husband Denny on his way,” She asked. “No, I replied, he is home with our boys. Does he need to be here?”
“Let’s all go to a conference room and get Denny on a conference call. That way he will be available as well so that I can answer any questions he may have.”
Dr. Jakacki asked, “Why did your mother come with you instead of Denny?” Her questioning made me feel uneasy.
“We left for Pittsburgh prior to him being able to get out of work,” I said. “We felt it was best for Denny to stay at home with the boys since we weren’t sure how long we would need to be in Pittsburgh.”
“Our family is already under stress,” I said. Denny has undergone a follow up at the RegionalCancerCenter a couple weeks ago. “His lymph nodes appeared abnormally enlarged. A PETSCAN indicated some concern with the area around his lungs. The biopsy is four days from now on Monday. Our twelve year old is Autistic. We have a very active two year old as well. We already have so much on our plate.”
“Tell me about your children,” Dr, Jakacki said. “They are all adopted, I replied. My oldest boy is from Ukraine. We brought him home when he was twenty-two months old. The other two are biological siblings. They are pre-adoptive foster-care placements through Catholic Charities children’s services. I had three previous children placed with us as pre-adoptive placements. All of them returned to biological family. As hard as it was to experience losing them, I truly feel that everything happens for a reason. If things had worked out differently with them, we wouldn’t have the family we have today. We feel blessed given the opportunity to love such amazing children. We feel our family is finally complete.”
Denny was on the phone for the conference call. Dr. Jakacki said, “This is what the MRI indicated. Emmy has a mass in her brain. It is a Pontine Glioma or Brain Stem Glioma. It is located in the pons part of the brain. This is the area that controls connections from the brain to the spinal cord as well as eye movements, face muscle control, swallowing and breathing. The tumor is diffusely infiltrating (a tumor that spreads within the area). Surgical removal is impossible. Doing a biopsy or surgically trying to remove the tumor would essentially kill her. This type of tumor most often affects children between five and ten years old. A daily regiment of radiation treatment for six weeks along with a steroid could possibly take Emmy back to baseline, where she was prior to symptoms. The steroid would cause weight gain, a veracious appetite, and severe behavioral issues. She would need to be under anesthesia daily for the radiation treatment to occur. There is a possibility that the radiation could make things worse. If the radiation is effective, it is only temporary. The tumor will come back usually within three to six months and at that time, no course of treatment will be effective. It will be extremely aggressive. The average life expectancy with radiation is nine months to one year and without is only six to eight weeks. Her weaknesses will grow stronger. Her eyes may get worse. She will eventually no longer be able to walk. Her facial muscles will change. She will no longer be able to smile. Chewing will become more difficult. She will no longer be able to swallow. She will grow more and more tired. The little girl you now know will eventually disappear into a coma. She may develop hydrocephalus. After a week or so in a coma’ she will die. As awful as this seems, the death process will be very peaceful for her. Knowing all of this, what step do you want to take next? There is no right or wrong decision. You need to make the decision that is best for your family and we will support you and Emmy the best that we can.”
I couldn’t believe what I was hearing. I had already made up my mind that we would fight this. We would get through this just as we had done before with Denny. I could never have imagined that there would be no treatment. No matter what we decided to do, there was only one outcome, death. I was in a daze. I couldn’t concentrate on the doctor remarks. I kept hoping I was in some sort of horrible nightmare and I would wake up any minute. It was hard to breathe. The room seemed smaller and smaller, closing in on me. My chest hurt, my heart hurt with stabbing pains. I could hardly swallow. There was a basketball size lump in my throat. I tried holding back the tears, wiping the corners of my eyes to keep them from running down my face.
As I looked around the room, everyone was staring down at the table. They too were trying to hold back their emotions. I could tell from the crackle in Denny’s voice on the phone that he was as upset and in as much disbelief as I. “Thank you for being so honest with us. We appreciate all of the facts. Tammy and I have a lot to talk about before we can give you our decision,” he responded.
The conference call concluded with Denny. I told the team of hospital staff that I was sure I knew what Denny’s decision was going to be. He would not want Emmy to undergo lengthy treatments that would make her miserable when the outcome would still be DEATH. I still needed to talk to him. I returned to Emmy’s room to find her asleep. Mom was knitting. She asked, “Well, what did they have to say?” I replied, “It isn’t good Mom.” I informed her of everything that Dr. Jakacki had told us. Mom, Emmy’s life expectancy without treatment is only six to eight weeks.“ Her jaw dropped in disbelief. “Mom, I just don’t know what to do.” Her face was an expression of confusion. Her first reaction was we must pursue treatment. I felt that she wanted us to do whatever necessary to have Emmy with us for as long as possible. She too fought back the tears. She was hurting, but wanted to be strong for Emmy and me.
As hard as it was, it was time to make some phone calls. I needed to notify family and people at work. I needed to call Dad and his wife Ellen. I needed to get all the paperwork started so I could be on family medical leave. I needed to get home so that Denny and I could make one of the hardest decisions we would ever have to make in our lives. I needed to be with Denny.
I also needed some alone time. I decided to take a shower. I couldn’t hold it back in anymore. It was so unbearable, so overwhelming. I sobbed uncontrollably, gasping for air as my limp body slumped against the shower wall. The tears kept coming and coming like waterfalls from a mountain of sorrows. “God haven’t we been through enough already? Why is this happening to my family?” I screamed out. “You gave her to us as a precious gift. She is just a little girl. She is only three-years-old. My God, my God, why, why, why is this happening?” My body was shaking. “How can I be strong for her? Am I making the right decision? Will I question my decision later? Will I regret the choices I have made? Lord, give me the strength and wisdom to make the right decision. The decision that is best for my family. What are we going to do now?”