The very beginning...

2010-01-25T14:50:00.000-08:00

My name is Daunette Baker. My husband is John Baker and we have three children James (10), Genre (9) and Gionna (6). We have created this journal as a place for Genre's leukemia journey to be recorded and shared with others who may be travelling this path or who are interested in a family trying their best to live through pediatric cancer. Thank you for your interest in our family and, especially, our son, Genre.

On April 14, 2009 we were sitting at the table eating dinner. Genre turned his head to say something to me, and John noticed lumps running down both sides of Genre's neck. At that moment, an unusualIy dark and sick feeling took over the inside of my gut. Something instantly told me that Genre had cancer. I never thought of the word leukemia. Lymphoma came to mind. I knew with every fiber of being a mother that the lumps would turn out to be the unthinkable. I'm not sure if it was God himself preparing me for the day when we first would hear the word leukemia, or if it was just simply the intuition our Creator has given us moms. I just knew.

I took him to the pediatrician the next day. We were unable to see our regular pediatrician. We saw an older doc and, after examining Genre, he told me that the lumps were most likely viral. He had no other swollen lymph nodes. He told me that the lymph nodes you worry the most about are the ones near your clavicle. Genre had no lumps there. Genre was laying on the table in the office and the doctor was standing over him. I remember collapsing onto Genre's legs and fighting back my tears of happiness. I remember Genre saying, "What's wrong, Mama?" I responded, "The doctor just gave Mommy really good news about the bumps on your neck. You just have a cold." We were supposed to 'watch' the lumps and call if anything changed. After the high I felt in the examining room when the doctor assured me that the lumps were nothing, I left the office with that dark, sick feeling again. Why did I need to watch the lumps if they were just viral and everything was fine. Some part of me just knew.

Day after day, I noticed different things about Genre that meant nothing to me at the time. I noticed that Genre would lean his head to the left.  He'd be walking down the hallway and his head would be tilted to the left. I told him to stand up straight because he was going to hurt his back walking that way. I didn't know.

Genre would come into our bedroom periodically and tell us that he couldn't sleep. He complained of being hot. It was April and starting to warm up a bit. I'm a little crazy about sleeping with the windows open as we live in a ranch home. It definitely was a little warm in our house and I told him to put lighter jammies on and get back into bed. I didn't know.

Genre told me a few times that his neck and shoulders were stiff. I asked if they hurt and he always answered no. He had three or four pillows on his bed. I told him that he was probably sleeping with too many pillows under his head. I took two pillows off of his bed and asked him to sleep on just one. I didn't know.

These were some of the things that had been going on several weeks before John even noticed the lumps on Genre's neck.

On May 6th, Genre told me, again, that his neck felt a little stiff. He saw the pediatrician again on May 7th. The lumps were still present. They did a CBC and, at that time, it came back just fine. The doctor called me to report that the labs all looked just great. Because we were assured that Genre was well, we decided to visit friends in Treasure Lake over Mother's Day weekend in May, 2009. The kids went with their Dads on a bike ride to the playground. It was a ride they'd done many times before. When they came home, John told me that Genre really had difficulty riding his bike and keeping up with the other kids. He told me that Genre was sweating and could barely make it.  It was the first time in eighteen years that I saw real concern on my husband's face. I knew that he no longer doubted my gut instincts. He was worried too. That dark, sick feeling came back.

We saw the pediatrician the next day and she sent Genre for a chest x ray and more blood work. The chest x ray was fine. We found out that he had strep throat and we assumed the lumps in his neck would begin to disappear after he finished the antibiotics. The doctor assured us that the CBC and the chest x ray ruled out a parent's worst worry. Those were her words. We left her office feeling a little silly that we were so stressed out over strep throat. Obviously the strep had been in his body for a while and he was just doing a great job fighting it off. Now, with the antibiotic, Genre was sure to get better.

Genre was done with the antibiotic on May 22nd. The lumps went down only a little. That night we took the kids to eat at Pizzeria Uno in the Waterfront. Genre was sitting across the table from me. It was very dim in the restaurant but it looked like there was a large shadow on the left side of Genre's neck. I didn't pay much attention to it, assuming that it was just that, a shadow. After we were done eating and we all stood up to leave, I realized that the left side of Genre's neck was swollen out like a small water balloon. I felt like I could die right that moment.

I had Genre back at the pediatrician's office the next morning. The swelling in his neck was gone, but this time the doctor said he could feel lymphnodes in Genre's groin and under his arms. The doctor said he thought I should call and get an appointment with an oncologist 'just to rule things out.' What did that mean? Oncologist? Genre had no idea what that word meant, thank God. I was sick. I held on to the table and tried not to throw up. The doctor we saw that day was so matter of fact. He showed no compassion at all. I was there by myself and I felt the room start to spin. Passing out wouldn't be best for Genre. I couldn't let him know I was so afraid. Then it hit me - It was Saturday of Memorial Day weekend. I wouldn't even be able to call the oncology department until Tuesday morning! Three days of waiting!

The next day, May 24th we were at a concert at our church, Norwin Christian Church. Genre was enjoying himself but he didn't get up much. He had a few snacks but didn't seem himself. He felt warm and seemed tired.  He snuggled with me and listened to the music for a long time, but then he said he just wanted to go home because his back hurt. When we got home, his lower right back, alongside his spine, was slightly swollen/tender, and his hip hurt. He was crying. I could see the fear in John's face. At that time, we had no idea that hip/joint pain is a symptom of leukemia, but John looked worried anyway. We put him in the car and drove him to the ER at Children's Hospital of Pittsburgh. He threw up everywhere on the forty minute drive to the hospital. When we arrived at the hospital he was very flushed and warm. It was approximatley 11 pm when we got to the hospital.  The waiting room was jammed. There were people everywhere. After an hour wait, the nurse told John that it would probably be another six hours before Genre would be taken back into a room. That put us at 6 am. Genre's fever was gone and his back/hip didn't hurt any longer. We decided to take him home to let him sleep in his own bed. Why should he sleep in the ER waiting room all night? We'd bring him back in the morning.

In the morning, Genre was totally fine. His back and hip felt great and he had his normal energy level. As a matter of fact, he was out in the pool with his brother and sister before 10 am. He was playing and jumping in the pool. He was like a different kid - like Genre. It was now Monday morning. All symptoms were gone and I planned on calling for an oncology appointment the next morning. I know it must seem crazy to you that we didn't rush him right back down to the hospital in the morning, but he was perfectly fine. When I think back, I guess I experienced some denial. Just one more day of 'good.' I guess I just thought I would get an appointment within the next few days and we would go from there. Not knowing about the disease, I assumed a few days didn't matter. I really can't explain what we were thinking. Thank God for my friend, Kristie, who asked me why we weren't calling the pediatrician to find out what we should do. That never even occurred to me. I was just going to call for an oncology appointment.  I took Kristie's advice and I called the pediatrician's office to tell them what had happened the night before. I was able to speak with the PA. After I told her the whole story, she said, "I would take him right back to the ER." She said that once there is hip and back pain they worry about leukemia. LEUKEMIA????

On Memorial Day, the ER was surprisingly empty. They took Genre right back into an exam room.  They did some blood work and examined him. When the results came back, the resident told us that we would have to wait to talk to the oncologist. Again, the dark sick feeling. I tried to ask questions but the resident said she couldn't answer any of them. We could only speak with the oncologist from that point on. I followed her into the hall and asked if she would please tell me what Genre had . I begged her. I could see that she felt sympathy for us, but she couldn't. I begged her to tell me if what Genre had was curable. All she could say was that we needed to speak to the oncologist.  She said we would be going to the 9th floor for about two weeks. I had no idea what the 9th floor was! As we waited, I could feel the nurses giving us the 'look' we have come to know all too well.  They were whispering and going out of their way to make us comfortable. They knew what we did not.

We waited for two hours for the oncologist to get to the hospital. It was the longest and hardest two hours I have spent in my life. As I waited, I begged God that whatever Genre had would be curable. I knew it was cancer, I just begged that it would be curable.

Dr. Robert Sidonio arrived at the hospital and introduced himself to us. I asked that we meet with him privately. I wasn't sure what he was going to tell us and I wasn't sure what my reaction was going to be. I didn't want Genre to see me crumble. I left my son alone with the nurses in the ER. I had no choice. John and I followed Dr. Sidonio to a consultation room.  It seems like we walked for a very long time to get to a consultation room. I had no idea how much a part of our lives this Robert Sidonio would become, nor did I ever realize that God had chosen him to be one half of the team to take care of Genre.

We sat down and Dr. Sidonio said, "Your son has leukemia." I replied, "Can you cure it?" He said, "Oh, we cure this everyday. We beat leukemia every single day." With those words I was able to compose myself. I asked for a piece of paper and a pen. I went in to 'mom mode' and started writing down every single thing he said. John wasn't able to speak. He just shut down. I've learned that these are the 'typical' roles that parents play upon a new diagnosis of cancer for their child. Dad's generally fix problems and there was no way to even help Genre, much less fix him. It took my husband quite a while to work through this. But he did. Hopefully, you will see how John has grown and how much this illness has opened the eyes of his heart. But, that part of the story comes later.

Dr. Sidonio explained so much. They would be doing a marrow biopsy to see exactly what type of leukemia Genre had. We should hope for ALL. He would be having surgery to put a 'port' in his chest. He explained that they would be doing a spinal tap to rule out any cancer cells in his nervous system. He briefly explained chemotherapy. He said Genre would be in the hospital, on the 9th floor, for about two weeks and that his treatment would take anywhere from 3 - 5 years. He explained that he would have to be pulled out of school for a while; that he would lose his hair; feel tired; need to stop baseball, and so much more. So much information. So afraid. I think we were probably in that room with him for an hour. It was late.

We went back to be with Genre as soon as we were done talking. He had a blue tongue because the nurses were giving him popsicles and whatever else he wanted. He had invited all of them to our house for a swimming party the next week. Five of them. He had made a lot of friends while we were gone! They left us alone. I sat on Genre's bed with him and John sat behind us on a chair. He was crying and he was really having a hard time keeping himself composed. I, however, felt no pressure to cry. I was given unexplainable strength and the words to tell our son that he had leukemia. I told Genre that he had something called 'leukemia.' Genre began to cry a little. He didn't know what leukemia was, he was just scared. I assured him that it would be okay. The doctor had told me that they beat this illness every day. I explained that it is an illness in his blood and that we'd be staying in the hospital together for two weeks. I told him that he'd have to stop playing baseball and swimming for this year. I explained to him that his Dad and I would be with him every step of the way. He wanted to lay down, so we made him comfortable. I sat on a chair next to the bed so that I could hold his hands. Suddenly, Genre pulled his hands away from me and jumped to the other side of the bed, away from me. I was worried and I asked what was wrong...he said, "I don't want you to catch my leukemia!" Tears.

I have no recollection of who I called or what happened beyond that. My mom said I called her and several other people. I don't know. We got to Genre's room at about 2 am. The brand new hospital was a beautiful place with bright colors and large, convenient rooms. The nurses seemed kind and Genre was glad that there was a snack cart. That was how this all started...

Journal

The very beginning...