Five years ago, tomorrow, my son Caleb had to have a brain tumor removed. I have copied and pasted the same post I originally wrote four years ago. I decided a long time ago not to write this post over, because the experience was extremely emotional and I find it very hard to put into words.
I still have times when I have an anxiety/panic attack when Caleb tells me that he doesn't feel good. It just sets the fear in me all over again, taking me right back to that moment in time when I thought that I might really loose my precious son. There are no words to sum up this experience. Here is my post...
First, I need to start out by saying how emotional this post is for me. I'm very teary eyed every time I talk, write or think about my son Caleb and all that he has endured. Five years ago, my oldest son Caleb had to have major brain surgery to remove a golf ball size tumor.
I want to share with you the short version of Caleb's story. There are too many things to recap, things I don't even know how to put into words. The whole experience has been unforgettable in every way.
Caleb was six years old when this happened. He was having headaches on and off for about a year. Before we found out that he had a brain tumor, he was starting to have new signs of problems, other than just headaches. When he laughed, he would say that his head hurt while we were playing around with him. A couple of days prior to finding out, he couldn't walk very fast either.
On a Saturday night at 1:00am he woke up screaming in pain. I took him to the ER immediately. After sitting up in the bed for a little while, he was all smiles, not hardly any pain. He had some molars coming in, and so I asked the doctor if that could be causing the headaches. He said it could be possible. The doctor offered a CAT scan, which I turned down. I asked him how long it could wait until it was absolutely necessary. He said no longer than a week. I know, you are probably thinking that I'm crazy for not getting it. I thought that he would have to have an IV and be put through a bunch of painful tests. I was terrified!
The next night at 1:00am he woke up screaming again. I picked him up out of his bed and took him to the ER immediately. We took him to have a CAT scan right after he was signed in. The doctor said that the scan had to be sent through the web to Australia, because there weren't any doctors there at night to read it. I knew that something was really wrong. It's a mother's tuition, you just know when something is wrong. So I laid in Caleb's bed holding him ever so tightly, and was praying, praying and praying.
A few hours later, the doctor came in with the nurse, and if anyone has been in the hospital and received bad news, you already know that the doctor always brings a nurse with him when it's not good! He said, " I don't know how to say this." I didn't even sit up. I knew. He is going to tell me that my little boy has a brain tumor. He continues, " There is a mass in his head." He showed me where it was in Caleb's head. It was in the region controlling coordination. He had asked me if I want to see the scan. I replied, "yes." I remember staring at the picture of the CAT scan, and I said, "so does this mean he's going to die?" The doctor said, "I really can't tell you that." I could see the outline of his face on the screen, that's when the whole thing became "real" to me.
I remember calling my husband, who was at home with my other boys, and I began shaking uncontrollably. I made some more calls to Caleb's father, grandma and our pastor. (Yes, Caleb has a different dad. Nothing I'm proud of... the divorce that is. I was previously married. I was eighteen, way to young... sad situation, but we are able to be civil now, which many parents of divorce are not able to do.) Anyway, plans were made promptly to have Caleb taken to DeVos Children's Hospital in Grand Rapids.
Before Caleb was taken to have a three and a half hour MRI, I laid in his hospital bed with him. He fell asleep, and I just looked at every part of his sweet face. I sang some songs. Prayed, prayed and prayed. I knew that they were going to keep him totally sedated from the MRI all the way through surgery. This was going to be the last time that I was ever going to talk and hold him alive... if he didn't make it through that surgery alive. (tears....) At that moment, I thought about all of the good times, and everything that I wish that I would have done differently.
The nurses woke him up around 11:30pm on May the 22nd. and told him that they were going to give him a little nap. I got to tell him "I love you," and then the doctor started putting the medicine in his IV to sedate him. After that, the doctor gave him a medication that stopped all muscle controls. He was then put on a respirator. Yes, I watched, until he went limp from the muscle medicine. I walked out to the nurse station in the ICU, and quietly wept. When they were finished getting him set up, they wheeled him to MRI. I sat in his room for three and a half hours. When he came back, his ears were filled with tears. At that point, I felt like I was literally dying. I felt helpless. I asked if he was crying, the nurse said that it was the medication that does that to the eyes. To this day, I just don't believe that.
I sat by his bed, in a hard chair, and held his hand all night long. To watch his lungs get pumped up with air by a machine, was overwhelming. He would keep waking up and try to take the tube out, and the nurse would have to come in and give him more sedatives. I can't imagine waking up and not breathing on my own, and having a tube down my throat at the age of six. After going through the night and half the morning like that, the doctor came and got him at 10:30am on May the 23rd. Our pastor was there that morning and prayed over Caleb. I walked down the hall by his bedside until we came to the "double doors." I told him how much I loved him, and then they wheeled him through the doors. I stood there and watched them take my baby away. I watched him until I couldn't see him anymore. I broke down right there in the hall. I had never felt so empty in my entire life!
I sat in the waiting room with a bible in my hands. One of the nurses came in every hour and told me how he was doing. He did great! After four and a half hours, Caleb was brought back to the ICU, and I got to be there when he woke up. To hear him say that he knew where he was and who he was...... well, that was just pure bliss. I stayed by his side for five days straight. He had a shunt that had to be removed before he left, and that was pure, well you know, torture. He got to go home after five days. To go home so soon after brain surgery, that was a real blessing. Extremely scary too.
The doctors said that he was fortunate the tumor had a sac around it that didn't allow it to spread. I am certain that God had something to do with that! The tumor was benign. The doctors don't know what caused Caleb's tumor, but it likely had been there his whole life.
Through this whole nightmare, I have learned and grown so much. Life just "looks" different. I can say for 100 % that it had put the fear of God in me. Just knowing how much our lives are truly in His hands. It is completely up to the Lord when we will go and be with Him and all of His glory.
For the first year after Caleb's surgery, you could find me on my floor praying to God at 1:30 in the morning, every time he would wake up at night. I had been so traumatized through the whole ordeal, I had a really hard time going to bed at night, because that's when he had woke up screaming and we ended up at the ER with a brain tumor. Now, you can find me on my floor, kneeling beside my bed, thanking God for His unspeakable gift..... the healing of my son.
Thank you Lord for my sweet precious Caleb..... Thank you.
