Today is January 16th, 1985
The last 2 days have been almost too much to bear. I just can’t seem to find enough hope to get us through. I have no motivation to do anything. I need our friends but I have a hard time communicating with them. Sometimes my head feels like it’s going to explode. I’m starting to feel like it’s just easier to stay depressed because every time we get encouraged a little we get knocked back down and the knock down is harder than just staying here. I really hate myself like this and I’m no good for anyone, least of all my family. Nothing will ever be normal again, I’m sure of it.
January 17th, I find it very hard to pen my feelings today. My thoughts are scattered. I had to give a short seminar on color analysis today at Southern Bell. Truly I don’t remember what I said or how I managed to stand there and speak. On my drive home I knew I was at the point where I had to find some reasons for hope for our baby. My driving became scary for me so I pulled off the road into the lot at the hospital. Time passed. Not sure how long. I finally made my way back up to the 6th floor to try and find Jo. She is quickly becoming someone I trust and she is a comfort to me. When she saw me she knew I was at a very low point. She took time to talk to me until she was sure getting through this day would occur without me taking my own life. I am so selfish. My thinking is so wrong today.
I had to get away for a few days. I took Lindsey and drove to Boca Raton to see my friend Kim and her new baby. The weekend was pleasant with Kim but I’ve never felt more alone. One night after everyone had gone to bed I found it hard to sleep. I flipped on the television to a show that I thought sounded informative and rather interesting since it seemed to be dealing with cancer. Soon I realized what I was watching. It was a children’s telethon for cancer victims. They were raising money for St. Jude’s in Memphis. Case after case involved neuroblastoma. Not one case sighted a child that survived. They all died horrible deaths. It showed their progress and ultimate death. I quickly turned it off and ran to my room begging God for her life and finally realizing that in my struggle to have her whole, I was interfering with His timing for all our lives. I finally realized she was His and gave her back to Him where she belonged. Peace came almost instantly. The battle was over in my soul. She is His; I get to be her mom for as long as He leaves her here with me. What an awesome privilege I have. What incredible trust God has in me to let me be her mom for however long He chooses. Please let it be a very long time, God. She is my sunshine every day. I need your light to be brighter than my darkness right now. Tomorrow will be brighter. I remember now who holds the future. I just forgot for a little while.
Before I left Boca on January 20th , Lindsey’s hair began to fall out. Alone in Boca, I cried. I had thought it might not happen. But in just three short weeks it had already begun. Each morning as I lift her from her crib I find hair all over the sheets. When I comb her hair, or take her out of her car seat or pull a shirt over her head it falls. When I wash her hair it falls down the drain. Yesterday in the cold of this January month, the wind blew and I watched it grab her hair as it drifted off into the wind. The reality of chemo had set in. No more denying the effects of the chemicals in her body.
Each day I see a little more scalp appear through what used to be a full head of white hair. Each day also brings the realization of what we are going through even clearer. I’m conscious of people’s eyes on her, wondering if they can tell yet.
January 24th began her second cycle of chemo. Tomorrow she goes for her second echocardiogram. Four days later, on January 28th, and less than three weeks after seeing Dr. Pollock, Lindsey took her first steps for the second time in her life. Her steps were unassisted! My God is great. He truly meets us when we need him the most. She was so proud of herself. She grinned from ear to ear, while Lee and I caught each other’s glance across the room and beamed like never before.
She is a little unsteady but that’s ok. She will adjust. She takes quick steps in order to avoid putting full weight on her left leg.
As the days pass, now a week later, she walks a little more each day. Each day with a little more confidence in her steps.
On her last day of chemo the adria seemed to make her sick to her stomach and she couldn’t keep her breakfast down. She didn’t get sick until twenty-four hours later though. She felt bad all day and hasn’t eaten much since then.
The day before the supposed beginning of her third cycle on February 14th, her CBC showed a 1600 white count. Her last count had been 2600. It must be at least 2000 to start chemo. My heart sank again at this minor set back. This just delays our finish date for chemo. I worry that while she is not on the chemo that the cancer remaining will grow. I worry that this postponement in chemo will delay the second surgery set for April 29th . Dr. Cavett leaves for a convention in Hawaii and if her surgery is put off too long he will not be able to do it.
On Friday we returned (two days later) for another CBC. The count was 2000, just enough to start the cycle.
In the middle of this cycle we were phoned and told that Lindsey needed to have another CAT scan done to determine whether or not any further growth had taken place. We again entered the hospital for a few hours and put her to sleep while they scanned her entire body for new growth. A urine count is being done and sent to Oklahoma for the testing of catacolamines. If the level is high it indicates that the tumor is still present and growing. The prayer chain is again at work praying our little baby through this new development.
I bumped into Dr. Cavett in the hall of the hospital today. He said he would run and check the x-rays right then and call me with the results. The wait is always endless and the fears always great. With each new day a peace seems to be manifesting itself to me giving us a calm about our baby’s future. Of course, who knows what tomorrow may bring but for this day I am thankful for the peace.
Today is March 10th. We are still waiting for the results of the urine tests. It’s been a little over three months now since chemotherapy began. They think the cancer should be gone now. The waiting is driving us crazy. Some days in these last few months seem like a blur in my mind. Other times it is as though each day is etched forever in my memory. I wonder how long it will be before I wake up in the morning with secure thoughts for the day and for my children’s lives. This ordeal has taken a horrible toll on Lee. I’ve heard his sobs in the night and heard his prayers to grant us just a little longer with our baby. I’m so thankful for his walk with God. It keeps him strong. I’m not much strength for him right now.
In the last few days Lindsey’s surgery date has been changed to April 18th . But the very next day her white counts plummeted again to a very low 1300. That is the lowest it has ever been. Her normal count was 3600 in December. We were unable to begin her chemo once again. This time we have to wait four days to have it tested again. Maybe the chemo will begin on Tuesday.
March 10th , the word finally came. The results are bad and I’m once again searching for a way to cope with an emptiness that devastates me. The level of catacolamines is elevated above even what it was at surgery. This could mean lots of things. Mostly it means that there is possibly further growth. Nothing will be done until her surgery date. Today marks the beginning of a very long wait until April 18th .
I feel so afraid and I can’t stop my head from turning. It hurts and my stomach is aching. I fight the tears constantly. I beg the Father for my baby’s life everyday. The fear is immeasurable. Today I want to die.
March 18th, God gave me His portion. David spoke last night on fear. By listening I know that saturation in His word is my only escape. Nothing makes the fear go away until I put my thoughts on His promises. I know that I will never be the same again. I know that God is showing himself to me in a way that I may never see Him again. To let this time pass and not receive all that God wants for me would be foolish. I remember Caron sharing with me that, as mothers, few are chosen to go through what I am going through. God has given me this task to complete for His glory. With His strength it will be completed. I must walk in this truth. End of the line for me. No choices left.
In the days just past I am reminded of all that God has done and because I need His filling even now, I write the good things down to document the grace:
v Her diagnosis came at an early age (older than two, the survival rate drops to 20%).
v The surgery was 99% effective, leaving only 1% for chemo to take care of.
v The damage to her left leg has corrected itself except for foot drop and lateral rotation.
v She walks unassisted when the neurologist said she would never walk again.
v The chemo hasn’t made her real sick.
v Her hair will come back.
v She has begun to take the chemo willingly.
As praise to God I thank Him for all of these good things. I thank Him for His promise of 1 Corinthians 10:13. “No temptation has overtaken me that is not common to man, for God is faithful and will not allow me to be tempted beyond which I am able. With the temptation He will provide a way of escape that I may be able to endure it.”
I am learning very slowly but surely that my faith must lie in my Heavenly Father, not in a special doctor or in a chemical. The latter two disappoint and fail, but God never does.
March 18th, 11:30 a.m. Well, my mind drifts off to one month from today when at this time we will know something more definite about Lindsey’s prognosis. I have played out the day a million times in my mind. The wondering and waiting is once again my worst enemy. I am so scared of each day when I see Dr. Cavett. My mind is a whirlwind because in some way he is stability to me but he is also the one who always delivers all the bad news. I sometimes get nauseous when I know I will see him. My relationship with him has become increasingly difficult with all the mixed emotions I have. What I want him to tell me and what he has to tell me are always so different. I long for the day that he will come out smiling and say,” it is over, there is no more cancer, no more chemo, no more fear of the unknown.” No more pain for my baby. The endless nights will be over. The always-impending flood of tears and the constant thought of being without her will be over. He has no idea of the power he holds in one statement.
A friend wrote today and a scripture she gave me may be the key for me. II Corinthians 4:17-18, “So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary but what is unseen is eternal”.
Today is April 12, 1985, just a few short days before we enter the hospital. The tests have been completed and they all have returned negative. That’s a good negative. The only remaining test to be done is the bone marrow and VMH (urine catacolamine test). I’m feeling a bit anxious about our returning to the hospital. God has been gracious to allow me a few days of peaceful sleep and quiet thoughts though. It seems like He just sent a peace over me so I could prepare for the days ahead. It has been raining these last few days and I always get a little down when it rains for too many days in a row. My side of the bed faces the window where the sun comes up on a clear day. Each morning I wake hoping that ray of sunshine will warm my face and greet me without the rain. It is the small things, really, that bring such joy. Just the sunshine today, that’s all I really need.
Today, April 18th, Lindsey should be just entering surgery but it has been cancelled due to her low 1600 white count. Dr. Cavett has gone to do another surgery. He will be back afterwards to talk with us. Dr. Koch should be around soon to tell us what we should do next, whether to go home or wait for her counts to rise to 3000 here in the hospital. One more set back. Guess I will never get used to them. I get so ready and then, nothing. Just drags on and on. Lindsey stays confused and never knows or understands “why” about anything.
Stephanie is two doors down the hall. Her condition has worsened over the last few weeks. Stephanie has the same cancer as Lindsey. She isn’t expected to live through the weekend. I haven’t had the chance to speak to her mom yet but I am praying that God will give me the words when the opportunity comes. Their sharing the same disease makes my objectivity almost nil. Our outlook was a little more encouraging, even from the start, due to Lindsey’s age and location of the tumor.
The decision was made to discharge us on Thursday. We are to return on Tuesday if her count is ok on Monday.
Stephanie died on Friday around 11:00 a.m. The reality of her death and what caused it has really hit me hard today. I jotted a note to her mom sharing with her the words that I never got a chance to say to her while we were together in the hospital. As I look back, God’s master plan was working efficiently as He knew how much I could handle. Being in the hospital at the time of Stephanie’s death might have been more than I could handle. I’m sure God knew that, and sent us home.
Today is Tuesday, April 23rd. We have re-entered the hospital with her white count at 4600. Surgery is scheduled to begin at 8:30 a.m. on April 24th. The doctors have prepared us for the worst as usual. Dr. St. Louis told us that repeat damage could be done on her leg. More devastating possibilities that my mind just can’t contain.
Morning came early around 5:15 a.m. I hadn’t really slept well all night. I was anxious and nervous but at the same time there was an odd peace in my spirit. Lindsey was barely dozed by the Valium when Dr. Cavett came to take her to surgery. Instead of the volunteers or nurses retrieving her, he came himself. She went to him willingly and laid her head down on his shoulder with resolve. Somehow she must know that he cares very deeply for her. In a matter of moments he was gone with our baby. The emptiness once again sets in. The corridor leading away from the surgical area is still as long and still as terrifying. I pray that this is the last time we walk this hall.
The wait has begun. Never are hours so long as the ones spent waiting for news. Today’s news will be a definite indicator of her prognosis. Surgery began at 8:30 a.m. and at 12:15 p.m. Dr. Cavett emerged through the doors that I had stared a hole through for four hours. His face was relaxed, no sweat on his brow, no wet scrubs, only a grin that belonged to a man with good news.
He began to tell us that the operation went very well. They were able to do a very good exploration and got several biopsies, all were negative. He made sure to leave no stone unturned. He took lymph nodes out that could possibly be target zones in the case of a return. He felt 100% about its disappearance. At the base of her spine where the residual tumor was left before, it was all gone as well. Her chemo would be terminated permanently and our lives would soon return to normal. For the next five years she will return and be monitored closely for reoccurrence. This is done with cat-scans, CBC’s and VMH tests. Neuroblastoma rarely returns, but monitoring is essential for her complete recovery.
I have gained much respect for the pediatric staff of ORMC. We cherish our relationship with Dr. Cavett. His sensitivity to us has been overwhelming and his knowledge immense. His compassion for Lindsey was exceptional. He carried her back and forth from surgeries rather than have her transported. He held her in his arms in the pre-op while the anesthesiologist put her under. He would cradle her in his arms as if she were his own. No mom could be more grateful. His demand for excellence in everything he did was very evident. If someone did something improperly or insensitively, he would let them know about it immediately. I hope that someday the mark left on us by the staff of ORMC and Dr. Cavett will be left on others because of who I am.
The ultimate glory goes to my Jesus who chose to give to his children an added portion of His grace and love. Ecclesiastes 3:11 sustained us. I’ll never forget the day I felt impressed to send Lee to Zayres to specifically purchase yellow poster board and a red magic marker. I sensed God was telling me these colors and to write on it,” He makes all things beautiful in His time” Ecclesiastes 3:11. I also felt he wanted me to put it on the outside of our hospital door as a testimony to Him. Though at the time we didn’t know the outcome of Lindsey’s surgery. Obedient but embarrassed (I must admit) we placed it on the door. Some passers by commented from a spiritual understanding while others simply ignored it as they would a beggar on the street. Though I feel like we have walked through the valley of the shadow of death I always knew that His promises were true. He promises to never leave me or forsake me.
The days following surgery were painful for Lindsey. Once again opened all the way down her abdomen. Her recovery is slow but assured. She sleeps seldom and often opens her eyes with sudden intense pain and cries. The tubes coming from everywhere make her even more uncomfortable and irritable. After five days of tubes and IV’s they were all removed. Lindsey actually slept for a few hours. Her one remaining IV infiltrated in the middle of the night causing her arm to become filled with the fluid that dripped from the IV bottle. Her arm swelled tremendously and spread up to her breast bone and into the middle of her back. She woke up in excruciating pain. I quickly ran to the nurse’s station and told them. They removed the IV immediately and applied heat to her arm for several hours. It took thirty-six hours for all the swelling to diminish. Her body resumed its normal size once again. No permanent damage had taken place. Dr. Cavett was less than happy with this occurrence. Apparently, because the nurses on the night shift knew I was there always and taking pretty good care of her by myself, they didn’t feel the need to check in on her as often as they should of in the night. While they thought she was fine she was swelling by the hour. Doc had plenty to say, let me tell you.
Our stay was drawing to a close. I was increasingly becoming aware that I wasn’t quite ready for being on my own without the care of doctors and nurses. The knowledge that her cancer was gone elated me but the separation from what had become not only my support system but also dear friends. My heart is feeling heavy and I feel a sadness invading me. I found myself depressed. Why? My daughter is alive; we are going home to normalcy. But what is normal? What was normal for the last year was, doctors appointments, lab tests, hospital visits, phone calls with doctors and nurses, being alone, being invaded, taking turns going to church because she couldn’t be around germs, walking in back doors of doctors offices to avoid contact with others, gaining friends, losing friends. Normal? I don’t even know what that is anymore. That scares me I think. Being away from the security of Jo and Mo (oncology nurses we grew to love), and dear Dr. Cavett. I’ll see them all from time to time. Jo and Mo and I already have plans to have lunch. Dr. and Mrs. Cavett are coming to dinner in the next few weeks. I want Lindsey to remember nothing except how much these people loved her and cared for her. Yes, it is their job but some just do it with a little more heart than others. How many call their patients “Punkin” when they walk in the door, every time. How many doctors run to the grocery store to buy popsicles for their patients because there were none to be found in the hospital? How many doctors pray with you and for you on a daily basis around their own dinner table? Blessed indeed were we. He holds a special spot in our hearts for always.
The morning he walked into the room to give us our send off information I was already dissolved in tears. I’m sure he was totally confused. Wiping away the tears I tried to act mature and glad to be leaving. On his way out of the door he turned to give Lee and I a big hug. He said he had grown to love our family very much. He knew to take Lindsey from our arms at this point would be disastrous so he just leaned over, kissed her on her little head and whispered, “I love you precious little one”.
As we exited the hospital and drove away, I drew a deep breath of brand new air and exhaled hope for a bright tomorrow. May 15th, 1985 a new journey begins.
To be continued…