In the days leading up to Daniel's Oct. 24th surgery, Dr. Wehby discussed her strategy at length with us. A team of surgeons -basically all the best and brightest neurosurgeons she could assemble from Legacy Emanuel - would be assisting her in the operating room. On Oct. 24th, we brought Daniel to the OR at about 7:30 am. We stayed with Daniel until after he'd been put to sleep, then we were told to wait in a waiting area. We walked into the waiting room, and already dozens and dozens of people were there. The hospital moved us all to a larger area. Eventually, we had a total of about 60 people waiting with us! And that didn't include anybody in my family, as my own mother, coincidentally, was scheduled for a hysterectomy that same day.
To be honest, I was in no mood to talk with people, and just wanted to sit by myself and think. But having all those people there helped to distract my mind from obsessing over Daniel. Several of those who had come brought food, so everyone had something to eat, but I couldn't eat anything. Periodically, a nurse from the operating room would come out and give us updates. These were essentially devoid of any real information. Every update consisted of words like these, "Everything is going fine. They just started cutting... or they opened up his spinal cord and are working on the tumor, etc..." - what we really wanted to know was not revealed to us at all. The surgery dragged on for a total of 7 hours. Towards the end, the OR nurse came out again, and she had tears in her eyes. She said that all the people here supporting us made her cry. But I just knew her tears had something to do with the goings on in that operating room.
Finally, we were called to follow the nurse into another conference area. It was very strange walking out of a room full of people, all waiting to hear the news. I tried to maintain composure but found it very difficult to keep from shaking. I was so nervous and just had a strong feeling the news wasn't going to be good. Dr. Wehby was there to talk with us. She started giving us a bunch of technical information about what the tumor looked like, etc. She even showed us a few pictures of it. Then she said, "The tumor is NOT an ependymoma, as I had hoped. The tumor is a glioma, grade 4, meaning it's highly aggressive. A tumor like that in the spinal cord is inoperable, and fatal. I'm afraid there is nothing I can do for him." We asked her how much time he had. She said about 3 or 4 months, maybe. Then I did something that really surprises me, when I look back on it. Instead of breaking down, which was what I was "supposed" to do, I started telling her about our eternal hope founded upon our relationship with Jesus Christ. I remember saying, "Dr. Wehby, we are all going to die, one way or another. This earth is not our home. We are on a journey and heaven is our true home. God is good all the time. If he wants to take Daniel home to be with Him, then we are at peace with that. I know we will see him again someday." She was a bit shaken - but she said, "I'm glad that you have peace and I certainly hope that you are right." I remember that Wes and I were fairly calm, upon hearing the news. Although the news was beyond devastating, God had given us a peace and a strength for such a time as this. Then she went on to explain how she had removed the laminae from Daniel's backbones (the laminae are the part of the backbones facing the back). The spinal cord was much larger than normal because of the tumor, and was pushing up against Daniel's backbone. This was the cause of Daniel's intense pain. So without the laminae the spinal cord had nothing to push up against. A flexible "patch" was put in place of where the laminae used to be.
Going back into the waiting area to face the room full of friends and family was so very difficult. We stood there and had to break the news that Daniel - grandchild, nephew, cousin, friend to the people in that room - was given only a few months to live. Wes's sister burst into tears. Most of the people just sat there dumbfounded. We could not stay and talk with anybody because they were bringing Daniel out of surgery and we had to be there with him. I heard that the people from the waiting room remained for quite a while and prayed together.
Daniel was brought immediately to intensive care. Wes and I sat there together with Daniel in that small room. staring at our precious little boy, unable to process through what we'd been told. He was in so much pain, and a catheter they'd put in during surgery was hurting him really bad. The nurse caring for Daniel was named Elliott. He was fully aware of Daniel's prognosis and expressed a great deal of compassion for us. He was in Daniel's room in ICU almost his entire shift, trying to help in any way he could. He tried so hard to make Daniel comfortable and pain free, although it was a very long night for us all. He became Daniel's friend over that day and night, and when Daniel was moved into a regular room, Elliott still came by to visit, and even brought him a gift.
The next few days were extraordinarily difficult for us emotionally. But it's amazing how hope can survive even the grimmest of circumstances. And somehow despite all the bad news, hope started slowly making its way to the surface of our minds and hearts.
Showing posts with label spinal cord tumor. Show all posts
Showing posts with label spinal cord tumor. Show all posts
Monday, July 26, 2010
Friday, July 23, 2010
The Day My Heart Was Broken - Part Two
Wes decided to check with a nurse on the floor to see if she had any idea what was going on. She said she'd check for us. She came in a few minutes later, all smiles, telling us that everything was going fine, they just weren't finished yet. One more hour went by. Then the same nurse came in and said, "Your son is just waking up and the MRI is finished. Please follow me." She was not all smiles anymore. I had no idea where we were going, but it soon become clear we were not following her to the MRI department but to a conference room. My heart immediately started to race. We stepped into the conference room and the spine specialist from Tualatin was sitting in the room. I said to Wes, "That's the doctor we saw in Tualatin. What's he doing here?" I instantly knew then and there, the answer to my question. Something was wrong. I felt dizzy and sick to my stomach.
The doctor was very grave. We sat down in some chairs facing him. He said very slowly and somberly, "I'm afraid the MRI found something, and it's not good....at all. Your son has a very large tumor in his spinal cord. We think he may have some tumor in his brain, as well." Wes and I just sat there, holding hands, completely frozen. It took a few seconds for the information to register. He continued, "This is outside my area of expertise. I deal specifically with the bones of the spine, but your son needs to see a neurosurgeon. A pediatric surgeon named Dr. Monica Wheby has been called, and she's on her way to the hospital right now to talk with you. I'm very sorry..." He was visibly upset.
We asked Dr. Keenan some questions, which he was reticent to answer. I recall Wes saying over and over, "I didn't sign up for this." It was a pretty short meeting. We got up and started walking back. It felt like I was walking in a fog, or a cloud. We entered the hospital room, and Daniel was there, lying in a bed. He was still groggy from the anesthesia, but awake. He looked so precious and beautiful and sweet lying there. I wanted to hold him. But I just sat next to his bed and combed my fingers through his hair and told him how much I loved him.
But I didn't break down. Courage and strength had risen up from somewhere deep inside, and I was able to stay fairly calm. The interview I had watched of Lisa Beamer kept running over and over in my mind. The neurosurgeon eventually arrived. She was a woman in her early 40's. She had come from home and was wearing street clothes. By the time the surgeon had come to speak with us, she'd already taken a look at the scans and had seen Daniel's chart. Essentially, this is the gist of her conversation with us: Spinal cord tumors are very rare - not many doctors can say they have a lot of experience operating on them. I believe this tumor could be an ependymoma. Ependymomas are relatively easy to remove - they come out almost in one piece, kind of like a noodle. We need to do a biopsy first. I will remove a piece of the tumor and a flash pathology will determine what kind of tumor it is. If the tumor is an ependymoma, then I will continue with the surgery and try to remove it." She seemed confident, even cocky, and cheerful. She didn't wish to talk about anything beyond the impending biopsy and surgery, so we had very little to go on in terms of how this disease is managed, the survival rates, whether chemo and/or radiation would be recommended, etc...By this time, it was very late, around midnight. Daniel was asleep. We were advised to get some sleep. The toughest, most incredible journey of our lives was just beginning.
The doctor was very grave. We sat down in some chairs facing him. He said very slowly and somberly, "I'm afraid the MRI found something, and it's not good....at all. Your son has a very large tumor in his spinal cord. We think he may have some tumor in his brain, as well." Wes and I just sat there, holding hands, completely frozen. It took a few seconds for the information to register. He continued, "This is outside my area of expertise. I deal specifically with the bones of the spine, but your son needs to see a neurosurgeon. A pediatric surgeon named Dr. Monica Wheby has been called, and she's on her way to the hospital right now to talk with you. I'm very sorry..." He was visibly upset.
We asked Dr. Keenan some questions, which he was reticent to answer. I recall Wes saying over and over, "I didn't sign up for this." It was a pretty short meeting. We got up and started walking back. It felt like I was walking in a fog, or a cloud. We entered the hospital room, and Daniel was there, lying in a bed. He was still groggy from the anesthesia, but awake. He looked so precious and beautiful and sweet lying there. I wanted to hold him. But I just sat next to his bed and combed my fingers through his hair and told him how much I loved him.
But I didn't break down. Courage and strength had risen up from somewhere deep inside, and I was able to stay fairly calm. The interview I had watched of Lisa Beamer kept running over and over in my mind. The neurosurgeon eventually arrived. She was a woman in her early 40's. She had come from home and was wearing street clothes. By the time the surgeon had come to speak with us, she'd already taken a look at the scans and had seen Daniel's chart. Essentially, this is the gist of her conversation with us: Spinal cord tumors are very rare - not many doctors can say they have a lot of experience operating on them. I believe this tumor could be an ependymoma. Ependymomas are relatively easy to remove - they come out almost in one piece, kind of like a noodle. We need to do a biopsy first. I will remove a piece of the tumor and a flash pathology will determine what kind of tumor it is. If the tumor is an ependymoma, then I will continue with the surgery and try to remove it." She seemed confident, even cocky, and cheerful. She didn't wish to talk about anything beyond the impending biopsy and surgery, so we had very little to go on in terms of how this disease is managed, the survival rates, whether chemo and/or radiation would be recommended, etc...By this time, it was very late, around midnight. Daniel was asleep. We were advised to get some sleep. The toughest, most incredible journey of our lives was just beginning.
The Day My Heart was Broken - Part One
My husband and I have 3 children, but the one in the middle has a very special story - a story that has deeply affected and bled into the lives of everyone in our family, extended family, and our close friends. Through Daniel's young life, he has experienced some very "close calls." When he was 4, Daniel came extremely close to being hit by a fast-moving car. When he was about 5, he was playing in his room. There was a light fixture on the ceiling with no light bulb in it at the time because the bulb had just burned out. He was playing with a tent pole from a little play tent he and Elijah had gotten as a gift. He managed to stick the metal pole directly into the light fixture. I was downstairs, and heard a sound like an electrical surge. In absolute panic, I ran upstairs, and Daniel was crying from fright. There was a burned, smoking circle on the carpet from a bolt of electricity. The pole spanned EXACTLY the distance from the fixture to the ground. So the electricity flow bypassed little Daniel and went directly into the ground via the pole and not Daniel's body. It's as if, to my understanding, God had specifically protected Daniel, while at the same time, the enemy had specifically tried to destroy him.
When Daniel was 6, he started complaining of pain in the back of his neck. The pain and the complaining always came in the morning after he had woken up from sleep. Neither Wes nor I thought much of it at first. But day by day, the pain was getting worse and more frequent. After a few weeks, it started bothering him during the day and in the middle of the night. So, we took him to his pediatrician, fully thinking he had strained it somehow. His doctor ordered an x-ray, which did reveal a slight curvature in that part of the spine, but no apparent injury or anything unusual. Essentially, he told us that there was nothing wrong besides possibly a strain, and to keep giving him Ibuprofen - hopefully, the pain would resolve itself. But after a few days, the pain had only grown worse. So, we called his doctor back. The doctor didn't take us too seriously. But Wes and I were more concerned than ever, and Wes demanded, in tears of frustration, that we be given a referral to a specialist.
We got the referral to see a spine specialist in Tualatin - Dr. Timothy Keenan, on Friday, October 19th, 2001, . I brought Daniel to the appointment by myself. It was a beautiful, sunny fall day - driving up together, Daniel and I were enjoying the day, listening to music and feeling pretty carefree. The specialist examined Daniel and couldn't see anything out of the ordinary. But because Daniel was experiencing so much pain, he decided to order an MRI. He told me not to worry - the purpose of the MRI was just to rule out anything serious.
The doctor let me use the phone so I could call Wes and let him know what was going on. Wes said he'd meet me at the hospital after he got off work. At Emmanuel Hospital, the MRI staff told me Daniel would have to be anesthetized, but the MRI would take only about 45 minutes. Daniel was given a regular hospital room, so I was told to wait in there, and they'd call me after he'd woken up from the anesthesia.
Wes arrived quite awhile after I'd said goodbye to Daniel in the MRI department. When he walked in, I told him that I was a bit confused because I thought they had told me the MRI would take just a short while. And yet, Daniel had been gone for at least 2 hours. We sat there together and watched TV, since there was nothing else to do. During one of the shows, we saw an interview of Lisa Beamer, the wife of Todd Beamer. This was right after 9-11, and he was one of the passengers who took down the terrorists in the plane that eventually crashed in a Pennsylvania field. Lisa Beamer told her story of shock and grief upon hearing that her husband had died. Yet, I was so struck by her dignity. The interviewer asked her how she was handling everything. She said with confidence and poise, that her relationship with Jesus was sustaining her and bringing her comfort. She expressed how thankful she was that Todd had a saving relationship with Jesus, that he was in heaven, and how excited she was to meet him there one day. I bring this up, because, while listening to this interview, my mind, for the first time entertained the notion that something might be very wrong with Daniel. I hadn't even allowed myself to think that thought, until this point. But her testimony in the midst of these new, frightening thoughts, gave me tremendous courage. I remember vividly thinking to myself that if something did happen to Daniel, I had the same God Lisa Beamer had - the same God who brings comfort and peace and hope. As he sustained her, he would sustain me, no matter what we might have to face or endure.
When Daniel was 6, he started complaining of pain in the back of his neck. The pain and the complaining always came in the morning after he had woken up from sleep. Neither Wes nor I thought much of it at first. But day by day, the pain was getting worse and more frequent. After a few weeks, it started bothering him during the day and in the middle of the night. So, we took him to his pediatrician, fully thinking he had strained it somehow. His doctor ordered an x-ray, which did reveal a slight curvature in that part of the spine, but no apparent injury or anything unusual. Essentially, he told us that there was nothing wrong besides possibly a strain, and to keep giving him Ibuprofen - hopefully, the pain would resolve itself. But after a few days, the pain had only grown worse. So, we called his doctor back. The doctor didn't take us too seriously. But Wes and I were more concerned than ever, and Wes demanded, in tears of frustration, that we be given a referral to a specialist.
We got the referral to see a spine specialist in Tualatin - Dr. Timothy Keenan, on Friday, October 19th, 2001, . I brought Daniel to the appointment by myself. It was a beautiful, sunny fall day - driving up together, Daniel and I were enjoying the day, listening to music and feeling pretty carefree. The specialist examined Daniel and couldn't see anything out of the ordinary. But because Daniel was experiencing so much pain, he decided to order an MRI. He told me not to worry - the purpose of the MRI was just to rule out anything serious.
The doctor let me use the phone so I could call Wes and let him know what was going on. Wes said he'd meet me at the hospital after he got off work. At Emmanuel Hospital, the MRI staff told me Daniel would have to be anesthetized, but the MRI would take only about 45 minutes. Daniel was given a regular hospital room, so I was told to wait in there, and they'd call me after he'd woken up from the anesthesia.
Wes arrived quite awhile after I'd said goodbye to Daniel in the MRI department. When he walked in, I told him that I was a bit confused because I thought they had told me the MRI would take just a short while. And yet, Daniel had been gone for at least 2 hours. We sat there together and watched TV, since there was nothing else to do. During one of the shows, we saw an interview of Lisa Beamer, the wife of Todd Beamer. This was right after 9-11, and he was one of the passengers who took down the terrorists in the plane that eventually crashed in a Pennsylvania field. Lisa Beamer told her story of shock and grief upon hearing that her husband had died. Yet, I was so struck by her dignity. The interviewer asked her how she was handling everything. She said with confidence and poise, that her relationship with Jesus was sustaining her and bringing her comfort. She expressed how thankful she was that Todd had a saving relationship with Jesus, that he was in heaven, and how excited she was to meet him there one day. I bring this up, because, while listening to this interview, my mind, for the first time entertained the notion that something might be very wrong with Daniel. I hadn't even allowed myself to think that thought, until this point. But her testimony in the midst of these new, frightening thoughts, gave me tremendous courage. I remember vividly thinking to myself that if something did happen to Daniel, I had the same God Lisa Beamer had - the same God who brings comfort and peace and hope. As he sustained her, he would sustain me, no matter what we might have to face or endure.
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