Very late in the Year 1999, the doctor gave us great news! We are going to have a baby. In the weeks that followed, we were careful to follow all the doctor's guidelines so that everything would work well for our new baby. It was about four and a half months later that we got the news that it would be a girl. That's great. I always wanted a little daughter. In the following weeks, we began to discuss possible names for our baby daughter. After several discussions regarding different names for our baby girl, we settled on Daniella and Nadia as the middle name after my mother-in-law, Nadia Golubeva. Oksana's mother's home was just outside of Moscow, in Russia. She had come over to visit with us and was here when we got the word that she was going to be a grandmother. She was very pleased that we selected Nadia to be her granddaughter's middle name. The doctor told us the due date would be about the end of August in 2000.
As the time approached, my mom and dad decided to come up and be with us to help out while Oksana was recovering from the birth of our little girl. Mom and Dad drove up from their home in Ft. Myers the day before. Oksana went in to St. Mary's Hospital on August 28 and our little Daniella came into this world at 3:34p.m. We were all so thrilled at how beautiful she was. Mom and Dad stayed in St. Louis to be with us for another week to ten days and everything proceeded beautifully. Oksana recovered quickly and was back to her regular activities within one week to ten days. Mom and Dad went back to their retirement home in Florida and we began our new lifestyle as a family. Nadia continued to live with us for a number of months and took over the job as Nanny for her little granddaughter. Our little girl grew and progressed rapidly. She was eating baby food at five (5) months and began walking at 12 months. Grandmother Rogers couldn't stand it any longer and hopped on a plane to come to St. Louis to see her granddaughter walking. Nadia's visa was up and she had to return to Russia and along about August of 2001, Oksana and I decided to take a trip to Russia and to join Nadia as she returned to her home in Russia. Upon arriving to Russia, Daniella's aunt had noticed that one of Daniella's shoulders was larger than the other. That concerned us very dearly, seeing that we had never noticed it before. We had a very stressful trip; Daniella caught the chicken pox while we were there, and also came down with the flu. We had given her some medicine to control her temperature, and she developed hives, so we had to take her to a hospital there, where they gave her benadryl to control the hives.
When we made it back to the states we immediately took her to her pediatrician and he was very much concerned, so he referred us to Dr. Douglas McDonald at Washington University School of Medicine Orthopedic Surgery Department, where Daniella had a biopsy performed. We anxiously waited for the biopsy report and when it finally came, we got the great news that it was not malignant. At this time, the doctor told us it was only a leiomyoma, which is a non-malignant growth, not commonly found in children. On that same day, we all celebrated Daniella's first birthday with a party of about twenty good friends and neighbors. For the next four months, Daniella was growing very quickly and becoming a very tall girl. She was laughing, running, and talking a mile a minute. She had developed such a wonderful personality, and had become very independent.
At the end of October when we saw the orthopedic doctor, he suggested that we not operate to remove the tumor because of Daniella's young age. He told us that she might just grow out of it. He said it could be removed when she gets a little older if we wanted. He also asked us to keep an eye on the lump, and to follow up with him in three months.
Several months later along about the beginning of January, we noticed that the lump had started getting larger; we took our baby back in to Douglas McDonald M.D. and the doctor suggested that the lump then be removed because it might affect her bone growth. The operation was scheduled for February 12, 2002 and Mawmaw Rogers flew up to be with us during the surgery at St. Louis Childrens Hospital. Everything went well with the surgery and recovery and within a few days, we had Daniella home with Mawmaw helping out. Daniella had her arm taped to her body so she wouldn't move it for a while. She was a little trouper, running about as if the arm was free…. it did not hinder her one bit from attempting any task at hand. Meanwhile, the surgeons had sent tissue from the surgery for a biopsy analysis. Because we had an earlier favorable report, we were not concerned at all about how this report would come back. We were shocked and terrified several days later when Dr. Douglas McDonald called us and gave us the dreadful news that the tumor was rhabdomyosarcoma, a childhood form of cancer.
A few days later, we were referred to Dr. David Wilson and Lori Luchtman-Jones, M.D. at Children's Hospital Hematology/Oncology Department at (Washington University School of Medicine), and he recommended that we enroll Daniella in a clinical trial that was currently underway called POG D9803, COG D9803. He seemed to think that it would give her the best chance for recovery. He had told us that the treatment that Daniella would receive in the trial would be the same as any treatment that she would get if she were not in the trial. Wanting to give our little darling the best chance possible, we signed the necessary informed consent to enroll her in the study. Within a week, she was admitted to St. Louis Children's Hospital for her first big chemotherapy treatment. Mawmaw Rogers continued to stay with us during this initial stage of the chemotherapy treatments. Daniella was a little sick during the treatment but recovered well so Mawmaw flew back home to Ft. Myers, Florida. Because Oksana and I have to both work, and we no longer had her mother, Nadia, with us as a Nanny, a very good friend and neighbor, Nancy McHugh, had been our babysitter. She had two girls of her own whom Daniella had become very attached to; they were like a family to us, and they all loved Daniella dearly. Daniella loved them all and enjoyed being in their home. All of our neighbors were so wonderful to us. They brought us food and showed a continuous love for us during the months of Daniella's treatments. They cried and prayed for us. Speaking of prayers, we had many people and groups of people praying for our little Daniella. Churches of Christ in St. Louis and Fort Myers, Baptist Congregations, and the nearby Catholic Church. We were all praying for our little girl. I am so grateful for all of the love, support and prayers that were extended our way.
Daniella was a little trouper again and was taking everything in stride. She was, however, getting chemo sickness and somewhat weak at times.
About a month after the chemo started (late March), Daniella was admitted back into Children's Hospital for her second big chemo treatment. Mawmaw and Pawpaw Rogers drove up from Fort Myers to be with our little girl during that period of time. The treatment was hard on our little girl and it was a tough time for all of us. After the second treatment, Daniella was back at home doing fairly well and was playing around the house with Mawmaw and Pawpaw. Both grandparents learned all of the songs from Daniella's favorite television programs. Over and over, and over each day they got to watch Rolly Polly Olie, The Wiggles and Barney on TV. They learned and sang all of the songs with Daniella. Mawmaw and Pawpaw bought her bubbles to blow and she never wanted to stop doing that no matter how bad she felt. Other than that "on and off" sickness and losing her hair, Daniella was doing really well. It was difficult, however, to get her to eat much.
Coram Health Care came by the house on several occasions to check on Daniella's condition during her chemo treatments. Daniella was being given weekly Vincristine (chemo) treatments as outpatient at Childrens Hospital. Mawmaw and Pawpaw drove her in to the hospital several times for that and because I work in the hospital building nearby, I would take my lunch breaks and visit with her during the treatments. Meanwhile, Daniella seemed to be taking things in stride, and after several weeks, Mawmaw and Pawpaw returned home to Ft. Myers. Daniella was confused for a few days and walked around the house looking in rooms saying Mawmaw? Pawpaw? When I called Mom and told her, she wanted to cry. Of course, we have all been crying and praying for a very long time.
There were several times when Daniella's blood counts dropped below acceptable levels after her second big chemo treatment, and we had to take her in on more than one occasion for transfusions. During the weeks that followed, she seemed to be getting worse and we had her back in to the outpatient department several times. On April 26, our baby woke up vomiting blood and we rushed her to the emergency room at Children's Hospital. My mom flew up immediately from Ft. Myers to be with us. On the morning of April 26th, we rushed our little girl to Children's Hospital Emergency Room that would later become the worst drive that I would have to make every day just to go to work down there. We had no idea what could be causing this, and at the time the Doctors didn't either. Daniella was admitted to the PICU unit at Children's Hospital that afternoon. Later that evening, we found out that Daniella had what was called Veno-Occlusive Disease of the liver. In laymen's terms, the veins in her liver were clotting off, and not letting the liver process like it should. This disease has been known to cause severe pain. Daniella was grinding her teeth in anguish off and on the first two days. So I instructed the nurse to give her some morphine, hoping that it would ease her pain.
Our wonderful and thoughtful neighbors did something that was beyond belief for us during Daniella's second day in the PICU. They organized a surprise dinner for us. Paula and George Varable, one of our neighbors, invited us to dinner on that night. What they did not tell us was that the entire neighborhood would be there and that it was a benefit dinner to raise money for Daniella. Everyone that came would contribute, even local restaurants and businesses. So many of the other neighbors and friends helped with the dinner that I can't name them all but it included our next door neighbors, Donna and Mark Avalos, Tim and Nanny (Nancy) McHugh, and Paula and George Verable. When Oksana and I arrived at their house for dinner, were we ever Surprised! It was such a wonderful night - one that we will remember always.
The days that followed were filled with so much emotion and sadness. We would not want anybody ever to have to go through what we went through there. Daniella's organs started shutting down slowly one at a time while we sat there and watched. All along we had hoped that our little Daniella would come through this. After 4-5 days in the PICU, the doctors told us that Daniella's brain function was starting to decline. She would start twitching her shoulders and moving her arms sometimes very fast. We did have hope at that point that there was some sign of brain activity.
All the other events that took place while we were there are too heartbreaking and sad for me to go into. I have to relive them almost every day now, sometimes vividly. On May 3, 2002 we lost our little Daniella. I will never ever forget the image of her lying in her bed after Oksana and I gave her last bath. To see your child in such a way is the most horrifying thing in the world. At that point, we lost everything that we had been living for, "our little Daniella…".
Our little Daniella is gone now. She had a short and painful life while on this earth but being the trooper she was, she laughed and played and loved and made the most of it. She was the sunshine in our lives. She is truly happy now with all of those wonderful angels taking care of her. She will never know another sad or painful day. Someday, Oksana and I and all of the rest of us hope to join her in that great land that she has found.
