For almost two years life took on some semblance of normalcy. Except for lots of follow-up appointments and protocol procedures that we had agreed to, our family was back on track. I’m not sure that I even would recognize the person I was before her diagnosis. Not facially, but internally and emotionally, I am not the same person. My opinions and choices, expectations and allowances are totally different than they used to be. I am significantly more aware of the simple joys and rarely miss the opportunity to applaud someone for a good deed done. In the past I would have taken for granted the simple joy and would have opted to applaud that person for the good deed the “next” time I saw him/her. Now I know that the “next time” may not come and the simple joy observed might just get me through the next hurdle in my life. Something to call up in my mind to think on, instead of the desperate thing invading it.
On November 14th, 1986, almost two years after her original diagnosis I noticed something unusual on Lindsey. I was helping her undress and noticed a protrusion under her left arm about half the size of a lemon. Knowing that this was not supposed to be there, I called Dr. Cavett at his home. He seemed relatively calm asking us to bring her in the following morning to have a look at it.
In the exam the next morning, his findings were unsettling. Strictly speculative, he told us of the possibilities. Hodgkin’s Disease, Leukemia, Lymphoma and Cat Scratch Fever to name a few. He decided to have her admitted as an outpatient following the weekend on Monday morning for surgery. His plans were to perform a biopsy and excise the whole lymph node where the lump had taken up residence. He would do a frozen section and have a pathologist read it while she was under anesthesia.
We left his office to embark on the longest weekend of our life. Our past experiences had jaded us terribly and no good thought could pass the negativity I felt. We were terrified of the neuroblastomas return. We knew from all the knowledge we had acquired the first round, which if it returned a second time, the odds of her survival would be greatly compromised. The cut off age for positive outcome is two. Lindsey now is almost four. There is no good thing about this being the same cell type as before. Any of the diseases Dr. Cavett told us about would be better than the return of neuroblastoma. Dr. Cavett assured us that it wasn’t neuroblastoma because of the way the lymph node looked. Neuroblastoma he said just doesn’t present itself in this way when it reappears. He was sure it just couldn’t be.
Monday morning arrived and one more time we walked that same horrible corridor and left Lindsey in the arms of Dr. Cavett. He told us the procedure would take about twenty minutes. I sat with my mom and Lee and flipped the pages of a Good Housekeeping Magazine. I never read or saw anything on any of the pages I turned, only the ticking clock had my attention. Forty-five minutes went by and between the crack of the swinging doors that led to surgery, I could see Dr. Cavett coming our way. When I saw his face I knew. His face was red and full of perspiration. His eyes bloodshot and puffy. I had seen this same face on Christmas Eve 1984.
He spoke as if in shock himself. He uttered my most feared thoughts. He had found positive neuroblastoma cells in the biopsy. As he continued to speak, our world began to crumble. His voice trailed off as consciousness gave way to unconsciousness. I woke to smelling salts and Dr. Cavett telling me that my baby was awake and needed me. She needed to see me put together and in control of my emotions.
The fear of the cancer’s return had drifted in and out of our minds over the last few years. But now almost a full two years gone, it hadn’t really come to mind in a while.
After Lindsey spent some time in recovery, we were transported by ambulance to ORMC where we were greeted with shocked and tearful faces of nurses whom I thought we would never see again under these circumstances. I could hear them whispering about how sad it was that we were back. I could hear them say, “that poor little baby has been through so much”.
The same battery of tests began all over again. Just as before her smile vanished and her happy little heart became solemn once again. I think of everything we have been through. That breaks my heart the most. I almost cannot bear to see the fear and sadness in her eyes. She is much more aware this time. Older and more conscious of her surroundings. She doesn’t seem to recall the past but seems to have some recollection of the fear of things that she can’t assimilate in her mind. I can see her wheels turning trying to figure it all out.
Lee and I are wasted in grief. We are in and out of shock. We knew far too well the real meaning behind these results. Once any cancer is in the lymph system, especially with neuroblastoma; chemo is only a formality. No one really expects it to work. The doctors knew it was just a matter of time. We were asked if we wanted to go the chemo route again. The particular type of chemo she would be on this time was extremely harsh to the body. One of the drugs could be crippling, cause hearing loss and kidney malfunction. We were told that two weeks to two months was their best hope. Though we didn’t really want her feeling worse than she already did, we just couldn’t bring ourselves to deny the chemo to her if indeed it might help at all. We opted to begin it.
That night as I lay in a chair at the foot of her bed once again unable to sleep, an uncomfortable heaviness was in my chest. Restless and short of breath, I decided I might be experiencing something concerning my heart. I didn’t want to disturb Lee from his sleep at home and this would put my mom completely over the edge. I decided to call my brother. It was 2:00 a.m. After speaking with him, he suggested I call a nurse. The button across the room above Lindsey’s bed seemed so far away. Too far for me to make it. I decided the hallway was the closest and fastest means of help. Unfortunately, somewhere from the little chair I was in and the door, I passed out.
I woke up on a stretcher heading for an EKG. The EKG turned out negative and apart from having a few irregular beats and a high blood pressure reading I was ok. They decided to put me in a bed alongside Lindsey’s. They wanted to observe me in the cardiac wing for a few days. Under the circumstances, rules were adjusted and I lay with my baby nearby, sometimes both of us in the same bed. That was the only place I felt any peace.
Surgery was scheduled Tuesday morning, November 18th. Once again under anesthesia for the second time in just twenty-four hours. The surgery was to install a sub-clavian catheter or what is called an infuse-a-port. A device by which all her chemotherapy is administered and will travel directly to the vena cave of her heart with one injection. This type of administration causes the body to be affected by the chemo quicker. It also eliminates the need for Lindsey to be stuck constantly. Chemotherapy will be given while we are in the hospital and then she will be kept three or four days in order to keep her hydrated. Without hydration, the chemo could literally burn the lining of her kidneys.
David Loveless, Berry, Terry and Leon have been praying for her round the clock for twenty-four hours now. They lay hands on her and anoint her with oil asking God to heal her. She is peaceful while they cradle her in their arms and pray quietly. I lie across the room and weep for my baby, her pain and my broken heart.
Her surgery went well. Dr. Cavett said that we could go home on Thursday. After Lindsey returned to her room we read up on the course of therapy ahead of us. Monday, Lindsey underwent bone scans, cat scans etc, the same group of tests done just the other day. This is done a second time just before chemo is administered to be sure that the condition still exists. To assure that nothing has changed and that the same course of therapy is right. By Tuesday afternoon, no one had been in to give us the results of these tests. Meanwhile the praying continues. There are people here many times a day in two’s usually. David believed that God wanted to heal Lindsey. They were determined to pray until they saw a manifestation in her life. I remember at one point while they were praying for her on Tuesday around noon, that Lindsey’s face took an expression that I believe was saying, “Mommy, something is happening to me”. Her expression was of peace and contentment. I hadn’t seen that face since we entered the hospital.
Late Tuesday afternoon the door to our room opened. Dr. Cavett and Jo both entered. They were both visibly shaken and had blood shot eyes. Our realtor and a friend were with us at the time because our house had decided to sell in the days just prior to the discovery of the lump. We were attempting to sign papers and get that underway in the midst of what was occurring. Dr. Cavett asked our friends to leave because he needed to speak with us alone. I couldn’t even imagine any worse news than what we had already been given. Were they now going to tell us we had only days with our precious baby?
Clint began to tell us that on inspection of all the lab tests that had been redone in preparation for chemo that they were all coming back negative. Lindsey had malignant lymphatic neuroblastoma. Test results don’t come back negative with that diagnosis. Especially results that just days prior had all been positive. I saw the radioisotope scan with my own eyes. I saw the invasion of cancer cells radiating all the way from her abdomen to her armpit. Clint, being confused by these findings, went back to the lab and looked at the neuroblastoma cells he had seen that were positive just yesterday. He found another pathologist to re-read the biopsy. The pathologist told Clint that the sample he saw before him belonged to a child with no cancer of any kind in her body. Clint said he spent an hour and a half in radiology trying to make sense of his findings. He could find no earthly understanding for these results. He believed our baby was free from cancer with no explanation except that we prayed and God heard our prayer.
Elated but confused, I stared at Clint blankly. I didn’t smile or scream I just felt numb. So much had already occurred in forty-eight hours. We were given the worst diagnosis a parent can hear then told that condition no longer exists. I wanted desperately to trust what I was hearing. But at the same time if Lindsey is really still sick and we take her home, what then? Dr. Cavett has a son about Lindsey’s age. I asked Dr. Cavett this question, “If this were E, what would you do?” His answer without a second’s thought was that he would pack him up as quickly as possible and get him home where he belonged to begin a healthy cancer free, divinely healed life. That answer was good enough for me.
We indeed serve a mighty God who desires good things for His children. When Lindsey was first diagnosed, I felt guilty. I felt like somehow my family was being punished for some sin in my life, whether forgiven or not. I felt that somehow I had brought this terrible tragedy onto her because of me. Also during this time, our church was going through a process of discovering that the same God that healed in the early days of Jesus is still at work. His ability to heal and restore life is a part of today’s world just as it was in the days of old. I was a skeptic of all this. I had seen a few things take place in our church that would indicate that indeed these healings do take place. On a personal level, I wasn’t sure that God would do it for us. Maybe I didn’t feel worthy enough or valuable enough. I’m not really sure why I felt this way. I just did. But now evidence of His love for my family and me was noticeable in a way I can never doubt again. Instantly, upon her healing, I became a believer like never before. A believer in the sense of His healing power in today’s world. I had been a believer of who Jesus is since I was a young girl.. I know the day will come when Lindsey will ask questions of this time in her life. Some moments will be remembered and some things will not. The scars that mark her body will undoubtedly raise questions, as she gets older. I recently read a scripture that will help me answer those questions concerning her scars. Her tiny little body is so scarred. Scripture says, “I bear the marks of Jesus on my body that You might be glorified”. How profound! If Lindsey did not have these marks who would ever know that anything miraculous had ever happened to her. When they ask she can tell them that these are marks left on me by a loving heavenly father to remind me of His boundless love and grace for her. She will be His little ambassador. In Psalms 116, He talks about praises to God for saving him from death. I meditate on this passage to keep me focused.
On Thursday Lindsey had surgery again to remove the sub-clavian catheter. It needed to be removed as soon as possible. When we saw Clint come through the door, his face was white and weary again and I began to worry that something had been discovered. When I inquired as to what was wrong he just laid his head against the wall and said, ” These have been two of the most difficult and amazing days of my career as a surgeon. I’ve done a lot of thinking, I’ve been doing surgery since the 70′s and I’ve seen some interesting things take place but never what I could honestly say was a miracle. But I know without a shadow of a doubt that I have witnessed a miracle of God take place. It has taken me two days to really bring myself to admit to it. There is just no medical way to explain it otherwise. I must go downstairs to my group of colleagues and try to explain this all to them. They want a medical explanation. I can only tell it the way I know it to be. This child was divinely healed by God. The answer is not in any medical textbook or taught in any school. It simply is the work of God”.
The sub-clavian removal went well. No complications, only more good news. Instead of her being nauseous from the anesthesia like all the times before, she wanted French fries to eat. No talking her out of it either. Without any delay, French fries were sent up, she ate every one and even asked for more. Two hours after she returned from surgery we were on our way out of the hospital.
Today is December 2nd, 1986. We just celebrated the most thankful Thanksgiving of my life thus far. Our family, all together, healthy and whole.
“Listen to the glad shouts of victory in the tents of God’s people: The Lord’s mighty power has done it! His power has brought us victory-His mighty power in battle! I will not die, instead, I will live and proclaim what the Lord has done.” Psalm 118:15-17
In the days and months following her recovery, God provided many opportunities for us to encourage others in similar situations. On one occasion, Dr. Cavett called me and asked if Lindsey and I would be willing to come to the hospital and visit a patient of his that was about Lindsey’s age. She was fighting a Wilms Tumor. We wanted very much to do all we could to be a beacon of hope to anyone that might be where we had been. Not everyone will survive this disease. But everyone has the choice of hope and reliance on God. Lindsey and I talked about going to the hospital to visit this little girl. She decided to take a gift with her the day we went. She wanted to take her most loved gift given to her by someone when she was in the hospital. She took her bear that sang lots of happy songs when you touch his paws. I just cried when I saw the excitement from her idea. We arrived at the hospital with her bear wrapped in “happy” paper and a balloon tied to its paw. This tiny little child of mine carried her most prized possession onto the elevator. As I watched her confidently stand in the same place that reminded her of so much pain, without so much as a concern for her very recent past, I knew that I was staring at a giant of courage and true healing. Not only healing physically but emotionally as well.
The visit went great. The girls played as if they had known each other their whole lives. Lindsey gave her the bear and they crawled up on her hospital bed and laughed for hours. Talking with her mother was good for both of us. She needed the outlet of someone who knew where she was. I needed to voice the potential positive outcome and watch it bring relief to another.
Later that year, I flew to Texas to retreat at a friend’s home. On my flight to Dallas, an older gentleman sat beside me. We began a conversation that eventually led to my telling him Lindsey’s whole story. I frequently tried to stop the story because I felt I was monopolizing the entire plane flight. Each time I stopped he encouraged me to continue. He was such a kind and compassionate man. On more than one occasion during the story, his eyes welled up with tears. I finished the story about the time we landed. We were going our separate ways, saying our good-byes, and I was apologizing one more time for talking so much. As I walked away from this man, I felt his stare. I turned to find him still standing in the spot we said our good-byes. He hadn’t moved. He beckoned me back to him. I walked back to him wondering what he was going to do or say. He spoke my name and said these words, “Don’t ever be uncomfortable telling that story. Don’t ever not share the whole thing. The part about what God did. I don’t know this God that you described. I know he exists and I believe that. But what you don’t know is that the reason I am coming to Dallas is because I have just been diagnosed with a cancer that they say is incurable. Listening to your story gives me a hope. Helps me know that people do survive. Thank you for sharing about your little girl with me. Always tell it whenever you think you should. You never know when someone might really need to hear it, I really did.”
I never heard from that man again. I don’t even remember his name. I have remembered his story though. I keep him in my prayers and remember him often.
Many such stories have taken place over the years. Victors or victims, we have to choose to be one or the other. Sharing her story with others always makes me feel strong. It reminds me, even on the hard days, that life is just as it should be. Her destiny is totally in the Fathers hands. His plan for her already known by the one that created her. No one knows what the future holds. I don’t even think I want to know. I only know that for now, the race is won.
Today is April 22nd, 2001. Many years have passed since those days. Those very hard times helped prepare me for the tragic death of my best friend. A brain aneurysm when she was thirty-three weeks pregnant ended her life after a three-week struggle to live. Learning with Lindsey to look for the positive and ward off negativity, helped me to encourage my friends, husband and family. I knew that I could get through this time because I had been through it already and made it.
“Made it”, more than just made it. Going through this with Lindsey has made me know the jewel that every day is. I take very little for granted. I try to express what I’m feeling to whomever I’m feeling it about. I don’t wait until I see them next. I either call them right then or drop a card to tell them. One never knows when their world might turn upside down.
In the years following Lindsey’s cancer she has become an amazing young woman. She went to physical therapy for years, wore a brace and saw lots of doctors. She did gymnastics, became a part of a ballet company and volunteered at the same cancer clinic that she was treated in. Mo and Jo, two of the same nurses that treated her, were still there. She is a youth leader and traveled to Africa last summer. Her zest for life amazes me everyday. Her joy is contagious. I can’t even imagine my life without the sound of her laughter in it. Her perspective on struggles in her life is most always a positive one. Her hands hold no stone of judgment on others. She offers acceptance to those around her with an open and vulnerable heart.
In just one month from now, Lindsey will graduate from high school. Her health is superior. No evidence of cancer has ever turned up again since that day fourteen years ago. She walks with a slight limp and still bears the marks of Jesus on her body, but no more complete a person will ever accept their diploma in a few weeks. To this very day she has no recollection of her first diagnosis and very little of her second.
Amazed by His grace and grateful for the journey.
Today is April 23rd, 2014
So many years have passed from my story but I am confident that no matter how small or big, old or new..your story must be told! You never know who may want to hear or need to hear it. There is so much more unfolding in my story as I walk this life, people have become such a big part to my story and with great hope and prayer I can be apart of theirs.
With that said I would love to hear your story. Please, feel free to tell me about it either in the comments below or in an email. May God be glorified and reveal Himself through every circumstance and “dark” we have been through.