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Deborah Lee’s journey: VIDEO
Deborah Lee was diagnosed with stage 4 brain cancer at 4 months old. I took her to the pediatrician for her 4 month well visit and what I thought was a normal visit turned out to be quite the opposite. We were immediately sent to Children’s hospital for an ultrasound of her head because she had symptoms of hydrocephalus. During the ultrasound the tech left abruptly and came back with several doctors that completed the ultrasound. They explained that they saw either a mass on her brain or she had a stroke in utero. They advised an MRI to get a detailed look at what they saw. The day after thanksgiving in 2007 she had a sedated MRI of her brain and the following Monday she was diagnosed with brain cancer. The neurosurgeon told us that the cancer had already spread to another location in her brain so she most likely had cancer before she was born. She was admitted that same day, had an MRI of her spine the next day to see if there was cancer there and went into her first brain surgery just 2 days after her admission. After a 9 hour brain surgery to remove the 6 malignant tumors in her brain, the neurosurgeon came to talk to us and said they would have to confirm it by MRI but he thought he had gotten all the cancer. After the MRI, it was confirmed that there was still a tumor up higher in her brain. She went back into her second brain surgery 5 days later. After 8 hours in the OR the neurosurgeon came back out and explained, once again, that an MRI would have to confirm it, but he felt like he got it all. MRI confirmed that there was still a tumor in her brain that was inoperable because it was attached to the main blood supply of her brain. Our hearts sank as we heard the news and asked the doctors, “what now?” The oncologist came in to talk to us in our room and told us what they could offer us as a possible cure for our 4 month old with terminal cancer. She explained it was a phase 3 clinical trial that would last 6 months and would be very hard on her as an infant. She would experience hearing loss, terrible sores from her mouth all the way through her tummy, intestines, and bottom from the chemo, she would probably lose her sight, she would not be able to physically do anything that a normal kid would do, but she would have a chance at living….After asking, the doctors finally told us her chance at survival was 7 percent. After the results of the spinal fluid came back, the doctor explained that her chance of survival was less because there were cells in her spinal fluid that they thought were cancer. Our hearts broke as we realized that she wouldn’t live without the chemo and with it, would only give a slim chance of survival and the quality of life would not be good. On the fence of the decision as a mother, I sat in the hospital room all alone one day and a lady came into my room and explained that she considered herself a Christian woman and wanted to tell me that it was okay to tell the doctors No and there was nothing wrong with taking Deborah home to love her. I truly believe that God sent her into my room somehow as I had earlier prayed, begging God for some way that I would know what decision to make and to give me peace about it….I called my husband and we told the doctors we wanted to leave and take her home and love her until the tumor took her life, because after all, God made her and gave her to us to watch over her and make the best decisions we could for her….Doctor after doctor came in trying to talk us into staying, to do the chemo and it came to a point that they were saying they could take legal action against us as neglect of medical care for our daughter and that we could be held responsible for the bills accumulating for the month we had spent there. After winning that battle, we left, taking our 4 month old baby girl home to love her, for her to be with her sisters, and to be all together before the tumor claimed her life. The doctors had told us we had 2-3 months….and all we could do was pray for a miracle for our Deborah Lee. We took a lot of pictures, and spent our first Christmas with Deborah Lee as it was her last, had someone come and take family pictures and just loved her and believed that God gave her to us and He could take her away and that would not be the worst thing that could happen to her. We prayed for a miracle but knew that God had a plan for her life and that His plan was better. I was a frequent visitor to the neurosurgeons office for the next 4 months as every time she would look strange I would fear the worst, that the tumor was taking over…but I was sent home with the doctor saying, “She’s okay for now”. We started thinking, it has been 5 months now…. so we called wanting another big MRI to see what the entire picture was and with a lot of push back from the doctors they finally agreed to do a brain and spine MRI with a lumbar puncture to see the cells of her spinal fluid. In May of 2008 she underwent a sedated MRI of her brain, spine and a lumbar puncture to look at those cells. The results showed that the tumor was not behaving like the stage 4 cancer she had, it had NOT spread to her spine and her spinal fluid was negative for any cancer cells….We claimed this as our miracle and an answer from God that He was giving Deborah Lee back to us. After a 6 hour brain surgery, the neurosurgeon came out and explained to us that he had never seen anything like this…the tumor had encapsulated and pulled away from the main blood supply of the brain and he was able to slice it right out and only take a couple small vessels with it. We all sat in that small waiting room and Thanked God for His miracle on behalf of Deborah Lee. A week later, she had developed a secondary hydrocephalus from the surgery and a shunt was placed to relieve the pressure on her brain as well as her broviac in her chest for chemo treatment. She did not qualify for the chemo they wanted to do before since she had 3 brain tumor resections and they had to put her on a different chemo regimen that was 18 months long. The oncologist stood in front of us and told us that she would have never survived the 6 month chemo regimen and that we made the right decision by not doing it and taking her home. She started chemo in June of 2008 and finished in November of 2009. This video is of Deborah Lee’s journey of her first 3 years of life. It brings her through birth and before we knew she had cancer, her 2 initial brain surgeries, our 5 months at home as a family while waiting for the tumor to take her life, her 3rd brain surgery, learning to sit up for the first time at 11 months, stand on her feet for the first time with help from braces on her legs, her regimen of chemotherapy, her new hair, ability to walk and talk…see and hear everything perfectly…the song sang by our good friend from church is titled “Cover Me Lord” and it was our prayer during those 18 months of chemo that God would put a hedge of protection around her and protect her sight, her hearing, her kidneys and all the effects of that toxic chemo that entered her body each week.
Deborah Lee turned four on July 20th and is doing very well. She has a lot of late effects from chemotherapy that have started to show up. Hearing loss is one of them. She will be fit for a hearing aid for the right ear. She is currently undergoing speech, physical and occupational therapy for her problem areas. She walks around independently now but still has some balance problems, she has such a sweet disposition and a spunk that has brought her through these past 4 years of her life, she has beaten all odds against her and this fall will be starting Kindergarten for 4 year olds at Mississippi Valley Christian School. Deborah Lee is always pleasant to the nurses and doctors, sits still for her IVs and scans, loves her IV pole and her favorite toys are stethoscopes, syringes, gloves and alcohol wipes…She has brought our family closer together, taught us a lot on how not to take a day for granted and most of all given us a glimpse of how powerful God is and has been in her life. She is now a year and a half out of chemotherapy and she has MRI scans of her brain staring in November every year. Even though cancer is a terrible, life changing diagnosis…it has brought more life to our family and love in our hearts than we could have ever imagined. We are so thankful to have Deborah Lee in our lives..
Psalm 61:1-3
Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.
Proverbs 3:5-6
Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct thy path.
To contact me, Amy Olney, please email me at . Website is courtesy of Getwebbed.net…Thanks, Bruno!
Barton and Amy Olney
Website courtesy of getwebbed.net