Truly Inspiring: Mikie’s Story

Michael Lee was born on May 28, 2010. Mikie, as we call him, was a very happy baby and from what we thought was very normal. One evening after coming back home from a family outing, I was holding Mikie, feeding him, and noticed his eyes where jumping. I called his doctor’s office the next morning and told them I need to get him in to be seen. I took him to the doctor and was told there was something wrong, that they wanted him to see an ophthalmologist to see if she could tell me what was going on. We took him to see her one October 13, 2010 and she told us that she could not see in his eyes the way she needed to so she sent us for a MRI on October 15, 2010. That was the day my life stopped turning.

On October 15, 2010 we were told that our son had one large mass in the front of his brain and two golf ball-sized masses in the back of his brain. So his PCP sent us that day to see the neurosurgeon who then sat us down and told us what we were going to do to start Mikie’s fight. On Sunday, October 17, 2010 we were getting ready for church and I had just finished feeding Mikie his morning breakfast. AS soon as I got up to put his bottle in the kitchen, Mikie puked across my living room. This was something I had never seen in my life so we called the doctor; he told us to take him to the nearest ER and tell them what we had found on the MRI and that he needed a CT scan done to make sure he wasn’t building up pressure in his brain. We grabbed our stuff and went on.

On the way to the ER, the doctor called me back and told me to bring him in to Greenville Children’s Hospital and that they would admit him to the hospital. We got to the hospital and they took him straight back and the doctor was standing there waiting on him. He told us that he wanted to see him to make sure he didn’t need to go to the PICU. They determined that he was stable enough to go to the regular PEDS floor, so we got to the floor late afternoon. It was just mommy and Mikie; Daddy had gone back home to get us some cloths.

We got to the floor and the nurses were great with him. They showed us where everything was and they explained everything that they were going to do to him before they even did it…that was great. So they finally got an IV started on him after three pokes and he was settled in his crib when his daddy got back.

On the morning of October 19, 2010, things took a turn for the worse. It was around midnight and I was just getting settled in for the night. I started hearing alarms go off. Not sure what they were, I pushed the button for the nurse to come and I asked her what was going on. She told me that he was desatting and I asked, “What is that? What does that mean?” She told me that when he was sleeping his heart rate and O2 levels were dropping. We watched him for a while and he kept doing it. She called the house doctor and he came and watched him too. He was worried so he sent someone to call Dr. Troupe (neurosurgeon). Within minutes she was back and said Mikie needed an emergency head CT scan and they wanted him to be transferred to the PICU.

In the PICU, the doctor was there waiting on us and they hooked him up to the monitors. He said Mikie’s brain was swelling and they needed to do an emergency operation on him. He was taken in to the OR at 5:30 am on October 19, 2010 and he was in the OR for almost eight hours. Dr. Troupe called me every hour to tell me he was doing well. The last two hours we didn’t hear anything. I got scared. When the doctor finally came out, all he would say is that Mikie was very critical and that we needed to take family only and go to the 4th floor waiting room where he would come talk to us.

On the walk up there my mind was going 50 miles an hour. We got there and he came in and told us that he wanted to talk to me and his daddy by alone. Then I knew something was wrong. He walked us to the PICU and put us in this little room where it was just me and him; one of our friends came back and they let her stay with us while they gave us the news on our 4-month-old baby at the time.

They told us our son was very critical and that they were able to get out the big tumor but they wouldn’t be able to get the two in his back. They went on to tell us that our son’s tumor had its own blood supply and that when they went to cut out the last of the tumor he started to bleed out. The doctor told us that our son had lost 720 mls of blood and that was 95% of his own blood.

He was kept on a ventilator for the next three days. His room was quiet – we had to keep our ringer off on our cell phone and we weren’t allowed to watch TV unless we kept it very low. On day four after his surgery, they were talking about taking him off the ventilator and we would see how he does with it. She turned off the machine and told us he would start waking up and breathing on his own. Within minutes of turning off the machine he started to move his hand and then he tried to reach up and pull the tube out of his mouth so they took it out and he did great.

On November 7, 2010 we finally got pathology back on his tumors and they told us that it was called low grade glioma (a.k.a. astrocytoma) and that they were malignant. He started chemotherapy on November 9, 2010. They told us that he would need to be on chemo for a year.

He is now getting ready to turn two on May 28, 2012. On April 03, 2012 we had our latest MRI and they told us he has a new tumor but we will recheck in in July 2012.

You can follow him on my facebook page @ jessica bloomingdale and he has a facebook page @ praying for baby mikie.

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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