We all have a story right? A story that has molded you into who you are now? I’ve been thinking long and hard on how I wanted to tell my story. A story that has shaped who I am. A story that is so deeply woven in me. A story that isn’t told enough to people that need to hear it. A story that is never too old to be told.
Since I was diagnosed with Neuroblastoma when I was a child, I don’t recall a lot of what happened. If I were to sit here and try to explain all the details I know I wouldn’t get all of it correct, so I reached out to my Mom a few weeks ago and expressed how much I wanted to share my story on my blog. I reached out to her because several years ago I found my Mother’s journal, which consisted of loose, teared stained pages of her heart on paper in regards to my diagnoses. My Mother journaled every day from the day I was diagnosed with cancer to the day I was healed. I put these pages to print and made a little book out of it, called Diary of Destiny. We have shared the little book with several people we have come in contact with but it isn’t getting around as much as we would like. In this day of age with my story being on a blog, I feel like it will reach so many more people going through the same illness and by my story being told, will let people know they aren’t alone in their fight and it may give a little bit of hope to them.
This story will be put into different blog posts so keep checking back for updates. Please keep in mind the story is sad and you may want stop reading but the end is so amazing so keep reading! Also, the breaks in small paragraphs were small journal entries..
So without further adieu….Here is my story from my mother’s heart..
Journal entries began on..
Wednesday, Dec. 19th, 1984.
Appointment day for Lindsey’s eighteen-month check-up. Our appointment was proceeding as normal and Christmas was approaching in a week or so. We nearly cancelled her appointment because I’ve been taking her to Pine Castle Methodist for her vaccinations. She had some congestion in her chest and her proneness to pneumonia had me a little nervous so I decided to keep the appointment assuming we would get the cough over with before Christmas to ensure that it would be a healthy one for Lindsey. Dr. Dumas was doing his regular check up procedures and palpitating her stomach when his lingering in that area began to alarm me. I questioned this and he commented that he felt something that he just wasn’t sure of and he was trying to convince himself that it was just an abnormally shaped kidney or her backbone or maybe even just bowel. But on further examination it was determined that indeed it was a tumor of sort. He commented that it “did not look good”, and he thought that it was a malignant neuroblastoma somewhere in the abdominal cavity. He asked if he could pray for her and of course I said “yes”. He told me to immediately get her to the hospital for admission and also to phone my husband and have him meet me at Orlando Regional Medical Center (ORMC). My, that seems like a long time ago now and it was only one week ago today. So much has taken place since then and so much has been discovered.
After a few calls, in my hysteria and shock, I located my husband, Lee, but could not find anyone else at home. I rushed Paislee, my first-born, to my mother-in-law and told her as much as she could handle without totally upsetting her. Paislee loves her “sissy” so much. What would life be without her? My fears voiced themselves all the way to the hospital and I could find nothing that calmed my mind; only fear and the inability to help her flooded my mind. How could my baby be gravely ill? She seems so fine. Only an earache and a cold.
On our arrival to ORMC Lindsey was asleep and I hated to awaken her to the fear of strangers and what was to come. In my wildest imagination I could have never guessed what the days ahead would hold. In less than thirty minutes our lives had changed from total security and certainty, to loss of both of the elements that always seemed so important to me.
Lee was already admitting her to the hospital for only what he knew, and what he knew wasn’t much. David Loveless, our pastor, was there as well to do what he could. I’m so afraid and so confused at how all this could have happened so quickly. Life is so uncertain and my, how we take our days for granted.
We were escorted to room 603 and deposited there to wait for step two of our unknown journey. Our minds wandered and our eyes were riveted on this beautiful eighteen-month-old baby that played so securely and confidently on the floor with toys I had brought her from home. She let all the nurses hold her as she smiled at them and pointed to all the trimmings of Christmas as if all was well. Lindsey has made fast friends with the nurses here. She walks around the hall and looking at her now, she has three stethoscopes draped around her neck, all given to her by the nurses whose hearts she had already won in just a few minutes. Maybe its because they felt sorry for her. Maybe they knew something bad was happening. It didn’t take long for them to get us underway with all kinds of tests. As a few of the tests returned it was determined that our worst fears were true and that indeed it was a tumor approximately the size of a tennis ball somewhere in her abdominal cavity. The exact placement of the tumor at this time is unknown. Dr. Greenbom did an ultrasound on her which basically showed the size and mass. An IVP test was performed. Dye is run through her kidneys to check for involvement there. They ran so many blood tests that I lost count. They did every x-ray known to man to check her other areas for growth. All of this is so frightening to her and most of it is very painful. They are collecting all the results they can in order to totally isolate the definite area. Surgery, we know now is inevitable. Whatever is there does not belong and must be removed as soon as possible.
The next day held liver, spleen, and bone scans. They inject radioactivity through an IV into her body to show discrepancy between her other organs and the tumor. The day after that was the day I dreaded the most. A bone marrow extract must be performed with her awake and without sedation. They took her down the hall in her daddy’s arms because by this time I just couldn’t take another painful scream that I couldn’t relieve her of. I closed myself in my room and tried to occupy my mind. It was no use. I picked out her screams among all the other cries of a pediatric wing. Her cries went on until I could take it no more and left my room for a spot farther away from the treatment room where they had my baby. At last Lee returned with Lindsey clinging to his shirt and her head full of sweat. Lee was pale but very much in control.
The IV they inserted for the radioactivity was terrible. They tried the veins in her hands because they were not able to use her arms because they were already exhausted from the previous tests. They tried her feet and thought they had it, then the vein blew and they had to start in the other foot. Through all of this torture, Lindsey lies there looking up at me with a face that asked, “Mommy, why are you letting them hurt me this way?” Lee had to finish the last foot with her because once again it was just too much for me. Terry (my brother) had arrived about that time and he and Lee stayed with her while I stepped out of the room. I felt so guilty leaving her and so much less of a mom because I wasn’t strong enough to stay. They finally got the vein and again the screams slowed down and I held her while she became peaceful once again.
Each day is a new hurdle with more news, good and bad. Still very unsure of its size and exact type of tumor, we wait for whatever and whoever can tell us “something”. Not always is that information accurate but because we have such a strong need for something, we grab anything that even sounds correct.
It’s Friday, December 21st and the above tests have been completed and they feel like it is safe to send us home for a few days so that we can have some resemblance of Christmas with Paislee. We left late on Friday afternoon and we will return on Sunday at 3:00 p.m. Her surgery is Monday, Christmas Eve at 7:30 a.m. How I dread that time of separation from Lindsey. Her little body seems even smaller to me now than ever and the thought of there being something in her tiny body that doesn’t belong there is so frightening.
Our drive home was so strange and so very quiet. Come to think of it, I don’t think Lee and I have spoken a dozen words since all this began. Sometimes we glance at one another but the words just don’t seem to be there. We are both so worried that to speak would be only to exchange fears that we are not really capable of dealing with.
Lindsey is a different baby now at home. Her appetite has returned along with her radiant smile. I’ve so missed that happiness in her. It didn’t matter what we did in the hospital, there was never a smile. I hope that this is not a permanent state for her. She used to be so happy. “God please bring back her joy”.
Tomorrow will be December 22nd, Christmas Day for us. Santa is arriving early for the girls because he understands the very special circumstances. I hurried the children to bed to do all the things that would normally take me days to accomplish. We quickly put together Lindsey’s rocking chair that she has wanted so much.
The happiness and excitement of Christmas is a bit over shadowed by the fear of the days ahead. I desperately try to block out the ever-invading negative thought that this might be our last Christmas with Lindsey. I must think positive and in faith. I just will. Because Christmas is so important to Paislee this year, I must deal with the pre-occupation of Lindsey and find the strength and courage to make tomorrow a happy and cheerful day for my precious gifts from God. How unjust it will be if we lose sight of little Paislee. Her precious spirit so frail and unsure of what is happening around her right now. She sucks her thumb more than ever. She has spent most of her time with friends that also home school. They are very sensitive to her needs. Lee comes home each night to make things seem as normal as possible for her. She knows fully that it is far from normal, but we are trying so hard to not disrupt her anymore than necessary.
Again we silently turned out the lights without many words. As we lay there in the darkness and silence, Lee wanted to pray together for our baby. Although the days prior had been quiet ones, when we prayed all communication was revealed and every fear expressed along with emotions stuffed so far away. I have gained incredible respect for my husband during this very trying time for our family. His strength in my weakness is incredible.
Our Christmas morning was indeed special as we saw Lindsey smile and all the wishes and dreams of our precious Paislee come true. She marched through her 4th Christmas. Make this last. This joy, this togetherness… Our day came with all the usual flow of family and gifts. Still our thoughts were of the child whose destiny, without help, lay in the balance. My faith is weak and my questions many.
Sunday afternoon came quickly and our return was a sad one. Lindsey’s response as she walked off the elevator to the 6th floor was one of great uncertainty. Her little whimpers began and the solemn face of a terrified child returned. Her head tucked securely into the crook of her daddy’s neck began again.
Monday morning at 4:00 a.m. our Christmas Eve began. We were awakened to blood tests and sedatives of Valium. At 6:30 a.m. they arrived to walk us to surgery. Mom, Lee and Eleanor arrived as well. Still very much aware but limp from the drug, we walked to the 3rd floor for surgery. Lee remained with the moms while I walked Lindsey with the surgical nurse to recovery, which serves as a prep area to await her 7:30 surgery. She remained fairly aware and when we walked to the point that I had to give her to the nurse, she held out her arms and cried for me to take her. She carried “Frosty”, a musical snowman that a friend brought her the day before. As I handed my baby to the nurse, when I could go no farther with her, everything in me became numb. I want to scream, grab Lindsey back and run out of here. Run to a safe place. I know I must trust the doctors. The nurse takes her away sobbing. I stand alone, lost, and unable to complete a thought. I can’t think. Only tears flow. My joy is gone. My baby’s life in such turmoil. The walk back without my baby was endless and I was so disoriented that I had to ask for directions. So much fear and uncertainty. Soon all questions will be answered and the truth will be known. In two hours or so we will know something. The corridor that was so cold and lonely seemed so long and I saw at the end was a room full of people that came to hold us up in love and comfort. I only felt numb and almost deaf to the noise around me. I felt so afraid and weak, in desperate need of Lee, to cry together. Just that.
The surgery turned out to be four and a half hours long instead of two. She required two pints of blood instead of one. The suspected neuroblastoma was now confirmed and only a partial removal was possible. The tumor was the size of a large grapefruit. They had anticipated its size to be around four inches in diameter. It turned out to be twice that size. Most neuroblastomas are malignant and this one was no exception. They walked us down to recovery while Lindsey lay with every imaginable tube coming from everywhere in her small still body. She was tied to the rails of a bed that was huge, making her body appear even smaller than it already was. I wanted so badly to hold her close to me and protect her from all that had happened and all that was to come. We stayed a long time…just looking at her, touching her and convincing ourselves that she would make it through this horrible ordeal. Dr. Cavett had informed us that it was only partially removable due to some vascular involvement that included spinal complications. Removing the tumor entirely would mean paralyzing her left leg totally. The microscopic cells left would hopefully be killed by the chemotherapy.
“Chemotherapy”. The word alone scares me so much and the thought of truly dealing with it seems impossible. It’s really the first time I’ve had to actually use the word in a personal sense. I’m so afraid of all that is down the road. But in my distress I am once again reminded of 1 Corinthians 10:13 as my mind seems to keep saying to me, “I just can’t take anymore”, God will provide a way of escape so that I can endure whatever God has in store for us.
They moved her to the Pediatric ICU. All the wires continued their use, keeping her body doing all the right things. Her blood pressure is a little elevated and her left leg is about twice or three times the size of her right leg. What’s wrong? I’m not quite sure, although, I do remember his comment about the danger of paralysis. I also quickly noticed that her leg lay limp beside her other leg, which was straight and rigid. Her left leg is hard and stippled and feels like it’s asleep or something. I became very frightened at my imaginings and knew I needed answers quickly. We found out that most of the doctors thought it was temporal. The swelling they thought would reduce in time.
Our days in ICU were long and tiresome. Mostly they were very depressing. Lindsey just lies there still and when she does awaken, she looks so afraid. Pain awakens her; the nurses come and give her painkillers through her IV. She finally falls back asleep, at peace in slumber. My poor little innocent baby. Stomach tubes are running red from her bleeding internally. These tubes must run clear before we can leave here. The vascular involvement makes this a very delicate area. Any nurse or doctor that comes near her sends her into orbit. It is becoming increasingly harder to calm her. Lee truly hates it in here. It’s loud and scary and everyone here is so sick.
We were in ICU from Monday until Thursday. The nights I spend at home. Sleep is impossible in the ICU. Friends and family were very insistent upon our going home to sleep while she is in ICU. We would call at 11:00 p.m. and 3:00 a.m. to check on her. Her blood pressure continues to climb and her leg seems so lifeless. Finally our days in the ICU come to an end. One day later than expected because of her elevated blood pressure. We transport our little baby to room 610 and Dr. Cavett requested a private room for us. She is still pretty sleepy most of the time. They have finally told us that indeed there is some nerve damage to her left leg. When they scraped the hip socket, where some of the tumor had spread, some of the nerves were stretched making her leg immovable. The part of the foot that flexes does not work at all. Walking will be a whole new challenge. It wasn’t that long ago that she took her first steps and was so proud. Now she will have to start all over and may not ever be able to really conquer it.
Today I am encouraged, as she appears to have a little more energy. She isn’t able to stand because of her leg but wants to sit up and play. My thoughts are good ones and I am pleased with her morale. The happiest moments of her day are when we take her for a stroll in the red wagon. IV poles and wires everywhere, we cruise the hallways of the 6th floor regularly. It makes her smile. She also has new bunny rabbit slippers that she proudly props up on the rails of the wagon to show everyone. She isn’t able to speak much because of the tubes down her nose and throat. But she does manage to convey her pride over her new slippers. Think we will capture this moment on film.
Physical therapy was called in today. A neurosurgeon named Dr. Montoya came to see us about a mylagram they want to do to see if there is any tumor on the spine. They will put her to sleep to do it. Physical therapy made a splint for her foot to hold in a ninety-degree position. She wears it two hours at a time, rests for two hours, and puts it back on. The muscles can become atrophied very quickly. The cord that connects her heel to her foot can shorten making a permanent impairment possible. Her foot must be rotated and exercised often. Six to seven times a day we do therapy on her. She screams and sweats profusely from the pain. She is also very angry at being prodded twenty-four hours a day. Say nothing of the abdominal incision that runs from her breastbone all the way down her belly. Abdominal surgery is some of the most painful and recovery takes a very long time we were told. It’s Christmas time and everywhere there are well meaning people singing Christmas carols for us and bringing in gifts for Lindsey. Carolers stroll the hallway. I feel truly sick to my stomach. I go outside for air and hear nurses talking about their holiday and what they will do for New Years. I am so angry and want to literally throw up at the sound of the carols. I want to yell at the people for what feels like patronizing. It’s not a merry Christmas and it’s not fair. Christmas used to be our favorite holiday. Right now I just need it to all go away. I want to cover my ears and close my eyes until it’s all gone.
Tonight I lost it “big time”. I felt angry that they didn’t stop before all this nerve damage was done. She ran into this hospital and she now has to be carried out because she can’t even stand alone. I’m so afraid she will never walk again and if she does, will it be with braces or a cane? The idea of her hair loss and nausea crowd my mind and I get so confused. Crying seems to be the healthiest outlet for me. Tomorrow will be better. I really need tomorrow to be better.
Monday a mylagram was to be done but the machine (cat-scan) broke. Because it was New Years Eve, Dr. Cavett decided to send us home until tomorrow. We left at 2:00 p.m. Monday and returned at 5:00 p.m. on Tuesday. It is 10:00 p.m. and I am in the hallway with the sounds of babies crying and a little boy in the next room crying for his mommy who hasn’t been in since 1:00 today. He is suspected of having T.B. so he is in isolation. He is so afraid. I’ve been talking to him from the hall trying to keep his mind off his fears. It is 12:15 in the morning. Lost in thought and trying to pen what I feel, I lay my head back against the wall of the hallway. Out of my peripheral vision I see movement. I turn my head to see what or who it was since even at this hour of the night the halls are still busy with nurses making their rounds. At the very farthest end of the hallway I see my dearest friend approaching. It was Debbie all the way from Huntington Beach, California. She had flown all day to get here to be with me. I cannot believe my eyes. Though my eyes are in disbelief, they fill with tears of joy because of her sacrifice to be here with me at this time. As we embrace I feel relief and know that joy does rise up in me still. Lindsey is asleep and tomorrow is again the big day for the mylagram.
Jo, the oncology nurse was here a while ago. She gave us some papers for consent about the chemotherapy. The risks and side affects are all written there. Possible affects are nausea, bladder irritation, hair loss among the most common. These side affects would be caused from cytoxen and adriamyicin. The adriamyicin could cause heart problems. She will have echocardiograms regularly.
It is after noon now and still we haven’t been for the mylagram. Who knows when they will show up to take us? It is now 3:45 and they are finally here to transport us. Meanwhile Lindsey has been NBO (nothing by mouth) all day. We waited an hour and a half for Dr. Montoya to come and still no one has arrived. Everyone was waiting for him. The anesthesiologist, the surgical nurses all waiting for this one man. Dr. Montoya was finally located at another hospital. He had forgotten all about the procedure! I can’t believe it. Finally the mylagram is underway and Lindsey was put into a dream sleep for about an hour to ensure her complete stillness. She was sent to recovery and was there around an hour. She was able to come back to our room instead of ICU because I would be there all night to watch her. Her lying still was not so hard because it was bedtime. The night was a restless one for me because I was so afraid she would wake up and raise her head too far. But finally the sun rose and the twelve-hour laying flat period was over.
Today is an important day for Lindsey. It begins her first day of chemo. Today is January 3rd, 1985 and December 18th seems like decades ago. Before the chemo begins today she will have an echocardiogram to get a base line of her heart to gauge whether or not the adriamyicin has done any damage to her over the period of time she will be on it.
The echo was painless, just a little frightening for her. The first dose of chemo was administered. It must taste awful because even with ice cream she went crazy hating it.
Finally our hospital stay is over. We are actually packing to go home for good. It is 5:10 p.m. I left there with such mixed emotion because I know we must return again in four months for more surgery. That frightens me so much. But for now we leave it all behind as a nightmare no one should have to ever endure. A horrible experience that has etched a spot in our minds for always. For our baby girl, I pray she leaves this part of her life behind and never recalls even one moment of the last few weeks. I know that there is a lesson we must learn from this. We anxiously await God’s word on this. One week later: The chemotherapy has gone remarkably well except for trying to come up with ways to get it down her. She hasn’t thrown up or seemed to feel bad other than being a bit listless. Tomorrow we go for the tough drug: adriamyicin I.V. injection. I dread this with my whole heart.
The adria was a success on the first try. What a relief. The days following went pretty well too. She has still never gotten really sick. I am so thankful for that.
On Monday, January 14th 1985 we saw Dr. Pollock, a neurologist recommended by Dr. Cavett. He performed an EMG on her. EMG is a procedure that is done by inserting small needles into the muscles of her legs to check the stimulation response of nerves and muscles. The procedure was very painful and Lindsey was totally awake. The report from the EMG, according to Dr. Pollock was that the gluteril muscles and muscle just below that have no response at all. Likewise the dorsa flex muscle (those of the ankle which draw her foot upwards) has no response. His prognosis for her: she will never walk unassisted. She will for always need the assistance of a cane, crutch or wheel chair. Today I am alone receiving this news because we had no idea that this procedure would bring this kind of devastating news. Lee had gone on to work expecting it to be just another appointment of consult. The news was almost as devastating as the cancer. My acceptance of this was almost incomprehensible. Maybe I shouldn’t accept this. It just can’t be true.
Lindsey is quickly becoming my hero and the strongest person I know.
To be continued…