My name is Jennifer Frankenberg and I would like to share my miracle with you.
My son, Connor Frankenberg, was born on August 5, 2003 at 11:45am. He was a small baby - 3 weeks early and less than 6 lbs! Other than the fact he was having trouble maintaining his body temperature, he seemed fine. 10 fingers, 10 toes. All was right with the world.
As he lay in his bassinette in the hospital and cried, my husband noted that he was tongue-tied. For those that don't know what this means, his tongue was affixed to the bottom of his mouth. Little did we know then what trouble that would bring us...
My obstetrician and our pediatrician both agreed that his tongue-tie was not of concern - especially because he was breastfeeding without problem. Less than 48 hours after his birth, we were released from the hospital.
Four weeks later, Connor suddenly began to have problems latching on and he would struggle so hard to breastfeed that by the time he did latch on, he would fall asleep. The effort not only exhausted him, it exhausted me too. By the time he was five weeks old, his dad and I knew something was very wrong. He was losing weight rapidly and seemed completely unable to breastfeed. We took him to an ENT and had his tongue released, hoping this would solve the problem. Unfortunately, it didn't and Connor continued to struggle.
A couple of days later, Connor had an episode that seemed very much like a seizure and we took him to Children's Hospital in Cincinnati, Ohio. They admitted Connor for dehydration and failure to thrive. The next week was unlike anything I have ever lived through.
First, they couldn't get the IV in his arm because his veins kept collapsing due to serious dehydration. Then they pricked his foot for his blood sugar level and determined it was so low, he was close to going into a coma! Though I wanted to breastfeed exclusively, now they told me he needed formula or he would die. They worked on my son trying to get a tube through his nose and into his stomach to feed him. Next, we were told his blood and liver counts were dangerously out of line and that he was severly malnourished. My son screamed as they inserted a catheter. We were told this would be more than an overnight stay - now they were talking several days. Concerned he may have a disease that was causing these problems, they ordered up a spinal tap. My husband and I, sick of hearing our son scream, and terrified at the procedures they were doing, put our foot down and said no to the spinal tap. Our son would be spared at least one painful procedure. Though it was a day from Hell, we were unaware how bad things were going to get.
The next few days were progressively better as Connor rehydrated and began to fill out from nourishment. The doctors removed the naso-gastro tube and asked me to start feeding him bottles. After a few days of sleeping on an uncomfortable hospital couch and not eating and breast-pumping every 1/2 hour, I was exhausted. Through stress, my breastmilk had pretty much dried up and I was sick of the thought of feeding Connor formula, but I did what I was told. It never even occurred to me that Connor was having trouble bottle-feeding. One of the nurses noticed it first. After spending 1/2 hour trying to feed Connor a bottle, she notified the doctor. A physical therapist came in and worked with Connor trying to "teach" him how to feed. Everyone assumed he was having troubles because of his tongue-tie.
On the ninth day in the hospital, the attending pediatrician came in and said he was concerned about Connor's feeding difficulties - he wanted a CAT scan done to look for any abnormalities that might be leading to his feeding issues. Just before we were to leave for the radiology department, one of the nurses told me that the doctor had changed the CAT scan to an MRI - she wasn't given a reason, but thought it might produce better images. My husband had a meeting to go to and I went to radiology on my own. Describing the process of the MRI is a story in-and-of-itself. I'll never forget the sound of that machine - KNOCK, KNOCK, KNOCK. Watching a 6 lb infant going into that tube is something I hope few people ever have to experience.
After the MRI, Connor and I sat in Recovery while his sedation wore off. Later we returned to his hospital room. Within an hour, a nurse came back and told us that the MRI had to be retaken! I was beside myself with anger - Connor had to be re-sedated and we went back to that horrible room with the loud machine. Later that evening, my husband and my grandmother joined us at the hospital. I'll never forget the next moment for the rest of my life.
The sliding door to the room opened and a nurse came in. She told us that the doctor was coming to see us and would be there shortly - then she left. I looked at the clock - 8pm - something was terribly wrong and I knew it. I told my husband I felt sick and he told me to calm down, everything was fine. But the sliding door opened again and the doctor walked in - I'll never forget his expression. He looked like someone had kicked him. Without wasting time, he said "I have some bad news." I stood stiff-legged and prayed I would not fall. He proceeded to tell us that Connor had a tumor in his brain. It was a bad one. My husband asked him how bad it was. The doctor told us it was the worst kind of brain tumor someone could have. It was in his brain stem.
I think some questions were asked, but I don't remember what they were. I kept reading the doctor's face and it told me everything I needed to know. We were told that we would be meeting with a neurosurgeon and a neurooncologist the next day to discuss in details the findings. Until then, our room would be sealed off from visitors, interns, and most of the nurses. In fact, the head nurse was assigned to our room as the only person allowed inside. We would be left undisturbed.
The next day we met the neurosurgeon and the neurooncologist. We saw the scans. Dead center of his brain stem was a golf ball sized mass – it pushed out both sides of his brain stem. Both doctors went on to tell us there was nothing they could do for us. Surgery was not an option as it would damage his brain stem to the point he would die in surgery. Radiation was not an option because he was only 5 weeks old and would never survive it. Chemotherapy was not an option because he was growing so fast at that stage that the chemo might not target the tumor. Gently, the doctors told us we had possibly 30 days, if that, before our son would pass away from the quickly growing tumor. We were taken back to the hospital room and left alone. The only person we saw was the head nurse who took over Connor’s care.
The next day we were notified by the pediatrician that Connor was being released. The hospital arranged for medical equipment to be sent to our house – a Kangaroo pump for naso-gastro feeding, a blood-oxygen monitor, and oxygen tanks. I was shown how to insert the naso-gastro tube in case it came out, how to use the Kangaroo pump, and how to hook up the oxygen monitor and tanks. Within hours, we were on our way home.
The next few weeks were a struggle. We kept Connor in our bed with us, hooked up to the Kangaroo pump. Though the situation was grim, something inside me wanted to fight and I continued to try to give Connor bottles of formula. Two days after his release, we went back to Children’s for some x-rays so they could monitor his suck-swallow reflex. As expected, his mouth and throat were not working in sync, causing more food to come back out of his mouth than was swallowed. Again, we were sent home with grim messages. The only up-side to that day was that the head nurse from the floor we had been on sent us a beautiful winged bear named “Herald”. This bear would stay by Connor’s side day and night and became his little angel.
Every day I continued to nurse him as best I could, and as time went by, Connor was able to get more and more formula into his system and less and less leaked out of his mouth. One day, his naso-gastro tube was accidentally pulled out. I tried and tried to put a new one in, but was unable to. Finally, I gave up and decided that I needed to work harder at giving him bottles. The next few days I was able to feed him till he was satisfied. Maybe, I thought, he won’t need the tube anymore. Actually, he never did need it again.
A month had passed since his diagnosis and Connor was still with us, getting bigger and stronger and drinking bottles easily. We had an appointment with the neurooncologist and he was surprised to see him doing so well. Another MRI was ordered. This scan showed the tumor was still there, but had not gotten any bigger. We were told to come back in three months for another scan, unless Connor showed any signs of difficulty in the meantime.
We had MRI’s performed every three months for two years. Each one showed the tumor – it wasn’t growing, but it wasn’t going away either. Spectroscopy scans showed high levels of choline and other indicators that the tumor was definitely cancerous. But it didn’t move.
We were told that Connor might not walk, that he might not talk. His brain stem is greatly deformed and nobody really knew what that might mean. Well, he is now 4 years old and completely normal. We stopped the MRI’s a couple of years ago because they were getting difficult for us to withstand and we knew that Connor would get to the point where he would start to remember them. As far as we know, the tumor is still there in his brain stem. We don’t know if it will sit there for the rest of his life, or if it is a ticking time bomb waiting for the right time to grow. We take each day, one at a time, and consider any time with Connor to be a blessing.
