While watching people walk back and forth in front of us in the waiting room of Radiology, my mind wandered thinking about our plans for that evening. It was a way to block out the worry of what I had overheard the doctor on 2nd floor say while setting up immediate X-rays for Desi. His low-pitched voice carried through the door he left slightly ajar. �Possible Muscular Dystrophy� I thought I had just overheard him talking about another person in the clinic but the last part of the conversation included Desi�s name. I quickly glanced over my shoulder to see if Desi heard, but she was busy talking to grandma. I tried remembering that doctors imagine the worst to be on the safe side. It was too bad our Family physician couldn�t have remembered that too. After all, this was the reason we were in this office in the first place. Too much pain, too little sleep prompted too many questions for such a normal childhood condition to which he referred as �growing pains.� A year of growing pains increasing in different parts of her body prompted all those questions. We wanted answers, we wanted someone to listen, someone to look into her eyes and see the pain her body was putting her through.

I sat and thought about how thankful I was to have been a part of an online network where I met a nurse and explained what we had been going through the last year. �Get your daughter to a CHILDREN�S hospital ASAP, Danise.� That thought would have never entered my mind had it not been for this woman. I assumed all doctors knew the same things when it came to symptoms. The next day I demanded that Desi be referred to Children�s Hospital here in Denver. Our physician fought hard and was angry that I wanted to go. �There is nothing wrong with her, Mrs. Martinez. Is it that you WANT - something to be wrong with her? Are you trying to FIND something other than normal teen growing pains?� I was calling from work and started crying and yelling over the phone to just get us there, do whatever phone or paperwork he had to do, just GET us there. After harsh words between us he told me he�d refer us to a doctor who would examine Deseree and if he thought she needed to go to Children�s he would refer her. He told me that Children�s would not accept Deseree because she didn�t have anything serious.

In the meantime I made a call to Children�s Hospital and asked if I would be able to just bring her in to the emergency room if my primary care physician took his time getting her referred to another doctor. I was informed that the only way they take children is if it is of a serious nature - life threatening. I hung up the phone frustrated and overwhelmed by it all.

I received a call from our regular physician�s nurse saying we were set up for an appointment to see the other doctor the next day. I felt enormous relief knowing that Desi would not have to suffer much longer. She would no longer have to miss school and sleep because of her pain.

Her appointment was scheduled in the morning and Desi had same important tests to take at school which she did not want to miss, so we picked her up after she completed them. I watched her walk down the main hall of her high school, limping and my heart sank knowing she had been suffering a great deal at school and trying to hide it. When she approached me, I noticed tear streaks on her makeup again, something I was familiar with each time I would pick her up from school. She sat in class and cried when the pain became a little too hard to bear.

One question from the doctor �tell me where the pain is�, and Desi pointed to several areas throughout her body. Less than 15 minutes in his office and he told us he was calling ahead to Children�s Hospital because she needed to be seen immediately. He wrote something on a piece of paper, sealed it in an envelope and told us to take it with us, the hospital would be waiting. One question is all it took, one question answered, and she was believed, someone finally listened after a year of pats on the head saying she was ok.

Children�s Hospital examined Desi and some doctors talked to her. We were left in the emergency room for hours when a doctor finally came in to tell us to come back the next morning because she needed to be seen by another doctor on staff.

The following morning as we sat and waited for the doctor to return to the examining room, Desi�s neck gradually became worse. All she had hoped for was that the doctors would find some kind of nerve infection, give her some medication and something for pain so she could get on with her day - her 15th birthday - and plans for a family party.

We were given a wheelchair for Des because of her neck and leg pain and were instructed of the times she was scheduled for x-rays. Since we had a little bit of a wait, we took her down to the gift shop to buy Tylenol which didn�t help, the pain was too severe. Mom went to another floor and asked for a pillow explaining that her granddaughter needed to rest her neck while waiting and we set her up in the main lobby across a bench.

As we sat waiting for Desi to be brought out from Radiology, the doctor whom I had overheard on the phone walked up to us and said, �not good. In fact, it�s very bad.� Very bad, I repeated in my head, �What is very bad? What does she have?� The doctor told us there would be another doctor to talk to us shortly and that Desi would be brought to us as soon as she was dressed. We sat in silence. Giga reached for my hand and held it firmly without saying a word. I thought about the fight we had been in that week and how those things didn�t matter right now, we needed each other.

Desi was wheeled out by an intern and we were told to wait for the doctor. Desi had a smile, glad that all the rolling around getting into certain positions was over. Noticing the look on my face, she asked what was wrong. I couldn�t say anything and held her hand. I was trying to think of words to let her know it was serious but not wanting to frighten her because we bad no idea what to be frightened of �Let�s wait until the doctor sees us, honey. We weren�t told what it is yet.� �Do I have to stay in the hospital?� Desi asked. The doctor walked up, introduced herself to us and quickly bent over Desi�s chair looking straight into her eyes. �Deseree, you have cancer.� I can�t describe the feelings I was going through or the thoughts swimming in my head, I can only say that it didn�t feel �real.� This was not happening. Desi�s look echoed my feelings. I held her and listened to her take a deep breath while trying to regulate my own. What was going through her mind? Fear? Disbelief? What is cancer? It hit me that I needed to let her know that having cancer does not mean you have to die. Even after telling her this, the look on her face didn�t change. I knew then that I would have to be strong for her. Whatever feelings I had, I needed to place them on the back burner and deal with Desi�s. I didn�t want her to see that I was frightened. How could three little words make your world crumble. This was not happening, I would wake up and it would all be back to normal. �Des, they�ll give you some kind of treatments, medicines, whatever they have. You�re in one of the best hospitals and someone finally listened to us. We�re going to get you fixed up and out of here.� Desi got up out of the wheelchair and walked over to embrace Giga and me. She said she would not use the wheelchair as long as she was able to walk on her own. This would mark the starting point of her determination and strong will. I knew that we would have to keep our spirits alive in order to cope with this frightening and uncertain journey. I told Desi to get back in the wheelchair just for a little while, while we go downstairs to admit her. I didn�t want to waste any time and walked around to the back, pushing her down the hallway towards the elevator doors saying, �Lets get this show on the road!� I would later find out that when I left Giga and Desi at the elevator, Desi got out of that wheelchair telling Giga she wanted to walk to her room. It was very important to her that she do this.

Admitting her was a hard process. I was numb. The blank stares prompted the clerk to repeat questions several times. My mind was not there, wandering to thoughts of my baby girl and her 15th birthday �present.� Not being able to control my emotions, I paused several times to cry while the clerk waited patiently.

After completing the admitting procedure, I was told which room Desi was in. In a daze, I walked through the long hallway to the end of the corridor where double doors led to �Oncology.� I stopped to look at the word and leaned up against the wall for a few moments before entering.

Desi�s room was already filled with nurses, specialists, dietitians and interns each with their own questions and procedures. Mom sat in the corner of the room overwhelmed...silent. Desi�s pain grew worse and was given Tylenol the first day. It�s true what they say about hospitals; you can�t be in pain until it�s time for your next dose, you are not allowed to feel pain until the charts say it�s time and the nurses can get around to it. This may be the case when you�re not Deseree Nicole Martinez but when you are, and you have a mom like me, rules change quickly. I took Tylenol out of my purse and gave them to her. When the nurse finally walked in, I told her what I had done and instructed her to mark the time and dose on Desi�s chart. I was given a lecture on how things would be handled now that Desi was a patient, and I in turn gave a lecture on how Desi would be handled while she was a patient.

That afternoon a young man came into the room and asked Desi if he might be able to ask her some questions. We thought this intern was there to get information in order to figure out what kind of treatment she was to undergo. He asked Mike and I to leave the room. I refused and thought this was very strange to even ask such a thing from parents. He proceeded to ask question after question, each one sounding a little more like a school project instead of the basic questions about symptoms. I stopped him mid-sentence and asked what this was all about. As if I had no business asking a question like this, he turned his head slowly and told me that he was down in X-ray while the doctors were discussing how unusual Desi�s case was and quite interested in finding out more. I ended his question and answer period by saying we had no time to help him out with his school project and asked him to leave the room. I immediately reported him to one of Desi�s doctors and he assured me he would find out who this intern was and explain that is not the way the hospital operates.

Dr. Greffe met with me and said whatever it is they find with the biopsy, her outlook so far did not look promising because of the amount of tumors she had. I chose not to tell Desi. I needed all the information before I could even think about how we were going to deal with the horror of it all.

Desi�s party would be spent in the hospital room filled with family and friends. Her first gift was given to her by the nurses; a giggling stuffed animal that made Desi giggle in return. The hospital brought her a beautiful cake and we started singing happy birthday. I stopped in the middle but continued to move my lips so that Desi wouldn�t notice. She had such a big smile on her face.

I walked out of the room with mom, dad, Diedra, Chantal, Giga, Mike and Marty, I turned and smiled at Desi. Once out of the room I burst into tears and I felt arms pull me close. I looked up to see it was Marty and he kept telling me he knows Desi is going to make it. �C�mon, lets walk� he said while motioning to the others in back of us that he was going to take me, that I�d be ok. He led me to the other side of the hospital out to the parking garage, still holding me close while I sobbed. Once outside I leaned against the brick and took deep breaths with a blank stare and started pacing. Marty stood there in silence, thinking. He turned and said �I don�t know what it is, Neese, I know they say she won�t make it but I just have this strong feeling she will. She�s going to make it, Neese, I know it.� I had a hard time believing in what he said and told him, again, what the doctors were saying but that didn�t change his mind. Marty had an insight none of us had back then and the matter-of-fact tone he used made me start thinking this could be possible. I�ll always love him for this.

The nurses were given orders to give Desi Tylenol only until the next morning when the doctors could examine her further. Her first night brought excruciating pain just above her knee and Tylenol was not helping. The nurse brought an ice pack and told me this would help. Desi was exhausted and kept drifting off only to have the pain awaken her again and again. Brenda, Ed, Michele and Jennie sat up with me watching Desi. I sat beside her holding the ice on her knee, wanting with all my being to be in her place. I concentrated on her pain thinking that if I prayed hard enough, wished hard enough, it would transfer to my body and leave this beautiful soul to carry on a normal life.

Sunrise was peeking through the slats where my bed was. I turned to see Desi was sleeping peacefully and didn�t want to wake her with the light so I lifted one slat and gazed out that window. I sat in wonder of how normal everything looked. The sunrise was just like a regular sunrise, skies were normal, cars moving down below with people going to work - normal. How could things not look any different when you see them through the eyes of devastation? Our lives had been torn in pieces less than 24 hours ago, our lives were ripped out from underneath us and yet. ..everything around us is normal...unchanged. I felt alone. I wanted the world to be affected too. I wanted everyone to stop what they were doing and acknowledge our pain.

Surgery was scheduled this day. Desi was scheduled to undergo various tests to determine the extent of her �disease.� We were told of an additional procedure they had planned along with the biopsy, which was the placement of a tube in her chest so that she could receive her chemo, medication, and morphine without having to be poked each time. The details of this device implant were more than I could handle. Little did I realize this would be a tip of the iceberg as far as what Desi would have to face in her future treatment protocol.

We were led to a room across the hallway where a young girl of approximately 12 years of age sat watching TV. She turned to Barb, the Physicians Assistant, and a bright smile came to her ashen face. Her eyes were dark and sunken in. She wore a baseball cap that allowed us to see just enough that we were aware she had no hair. This will be Desi, I thought to myself This will be the face Desi will see in the mirror. ..my stomach tightened and I wanted to run out of the room. Desi�s clenched hand around mine would prevent me from doing so, and I held on tight. I�m thankful Aunt P.A. was there with us because she held back the fear I know she had to have been feeling, and drew the attention from our discomfort and lack of words by asking essential questions. Aunt P.A. handled this awkward situation beautifully. Barb told this young girl that Desi would like to see her hickman, which is a long tube inserted in the large vein in your chest. The nurses are able to hook up the IV tubing to this. The young girl pulled down her shirt to expose the tube hanging out of her chest as if it were a part of her body, the person she was, and did so without a flinch. I looked at Desi to see her reaction. Her face was vacillating between a stare and a smile, listening to the little girl explain that it was no big deal. Barb looked to us and told Desi she had a choice, either what the little girl had or a metaport, which is a device planted inside the skin connecting to a large vein. She explained the metaport was not as tedious to care for in that you didn�t have to keep the tubing sterile, cleaning it several times a day and �flushing� the tube with saline solution to prevent clotting. A �choice.� This word was so clear a couple of days ago but today it meant nothing. Choice. What choices do you have when you have been hit with cancer. You have no power. I remained calm and together on the outside but I had already lost a large part of myself inside.

We were to meet with Dr. Greffe in the clinic since he was not scheduled for the Oncology floor that day and he needed to give us some instruction as to the kinds of tests they would be running. While out in the waiting room, we sat and watched kids come in with their parents, dragging their IV poles, no hair, the haunting looks of their eyes, so dark and sunken in. Kids of all ages, laughing and joking with the office staff and nurses. I wondered how they could be so sick, how the parents hearts could be so shattered and still be able to laugh. I looked at Desi and asked, �Will we ever be able to laugh again, Desi?� Somehow I think she was thinking the same thing as she just sat there watching and didn�t have the answer for me. At that moment, I knew that was the way I could help Desi cope. I finally found the answer as to how I could try to make her hurt feel a little better, just like when she was a little girl.

Mike and I wheeled Desi down to the Dental Clinic for a checkup. We were told her teeth could be damaged in the chemo treatment and they wanted to see what kind of condition they were in before starting. While wheeling her back to her room on the other side of the hospital, I told Mike to pick up the pace and I started singing the �Rawhide" song, quietly at first, but when we got to the large lobby area, Mike joined in and we sang LOUD as we whisked her across the hospital at great speed. Desi was laughing, and smiling from ear to ear the whole way. Her eyes would widen and she�d let out a yell thinking Mike would crash and burn but he assured her he knew how to drive this thing. I love this memory.

Later that day I walked into Desi�s room and saw that mom had rounded up a young man she met in the hallway who was just getting ready to be released. His name was Jeremy and he was a year older than Desi. Mom wanted him to talk to Desi so that she could ask questions of someone her own age and how they deal with all of this. Desi and Jeremy hit it off immediately. Jeremy had Osteogenic Sarcoma so they had something in common because that is what the doctors were assuming Desi had as well. He would tell Desi about the practical jokes he and his father would play on the doctors and nurses; taking the rubber gloves from the box in the room the doctors and nurses would use and cutting out holes on the tips of the fingers, etc. Jeremy had us in stitches. Before leaving he said he�d be in from time to time to have tests done and would stop by Desi�s room to visit (he had been on chemotherapy treatment for a little over a year and had just completed his treatment). When he left the room that day, I knew his visit had done a world of good for Desi.

Jeremy, his sister, Desi, and Giga became good friends and our families remained in close contact with one another even after Desi was done with treatment. Desi and Giga have a fond memory of having a pizza party in a hotel room with Jeremy and his sister. A friend of ours who we met through the hospital was a manager of a hotel and set up a room for the kids to use. They played arcade games in the lobby, ate pizza and junk food, laughed, talked, and just had the best time away from the hospital, away from the needles, just being normal kids. Jeremy was very special to us and the doctors and nurses would always keep us informed as to what his checkups looked like when we would go in for blood draws on clinic visits. Jeremy and his family were also well informed as to Desi�s health by the doctors and nurses in the clinic.

Desi made another close friend at Children�s. Iris was a year older than Desi too. She was going through chemotherapy for Leukemia. She and Desi soon formed a close bond and would gossip about the doctors and nurses. Iris was a live wire and made no attempt to hide the fact that she loved being ornery. She wasted no time in finding out about everything and everyone when she came in for her chemo treatments every month. She couldn�t wait to share what she learned with Desi. We�d find her sitting inside the nurses station on one of their chairs arguing about a certain something they wanted her to take. �I�d love to see YOU have to gulp down that crap, ya know?!� The nurses would shake their heads and beg some more. They loved Iris and her spunky attitude.

I watched Desi sitting on the side of her bed drinking a blue Kool-aid-like mixture called, �contrast� in preparation of CT scans, skeletal survey and an MRI. From this day forward, our language would consist of medical terms of which no one outside our immediate family would understand. We would not be able to carry on a normal conversation without including the jargon that goes with cancer. Cancer had pretty much taken a lot of things from us but there was one thing it couldn�t touch; Desi�s humor. She wasn�t too excited about all these x-rays she was having to go through and confronted Mike, �don�t these things cause cancer?� then broke out in laughter. Or the time when we took her downstairs to the lobby to get her out of the room for awhile. I had gone to the restroom and when I returned she handed me a cup. I asked what it was and took a gulp. As I was swallowing Desi says, �I have no idea, we found it in the that lab, I think it�s a specimen� I choked!

I was still at the point of thinking this might all be a dream and I would wake up to the blaring sounds of Desi�s stereo while she was getting ready for school. I prayed for me to be able to wake up. A sinking feeling overcame me when I thought that if it were a dream, how would I know all these medical terms and procedures? Why all the details; names, times, rooms, numbers, etc. With this thought in mind I resigned myself to the fact that this was real, this is reality, Desi has cancer.

The various drugs Desi was on made her sleep a lot and at times made her seem out of it. She had me sleep in her bed with her at nights and I remember waking up several times when the nurses would come in to check her machine or draw blood. The rail on the bed dug into my back because we had so little room but I loved being that close to Desi. I would stroke her face, kiss her, and rest my lips on her forehead, and pray while she slept. �I love you sooooooooooooooooo much, mom� she said opening her eyes briefly, and closing them to sleep again. Since she slept most of the time during her first week, mom made a beautiful guest book so visitors could leave her messages when they were there. She covered it in mauve satin with white lace and on the cover she decorated it with a white lace heart, a tiny strand of pearls outlining the heart, and a tiny mauve rosebud. Mom wrote on the back pages:

�My beautiful Desilu,

Grandma�

Aunts, uncles, cousins, grandparents, mom, dad, sister, everyone waited with us during surgery. There was no talk, just eyes focused on the floor. I suspect a lot of praying was going on in that room. I was handed my first religious medal since Desi�s diagnosis as I sat with my Aunt Kristine and Uncle Jerry. Jerry�s mother had given it to them to give to me along with a message that she had set up a prayer group for Desi. I needed this. My soul needed this. I was slowly dying inside and this was a way to keep my spirit alive for Desi. I clutched this medal and prayed for life, strength, hope, and the ability to plan for tomorrow.

Desi was brought up from recovery about four hours later. She bad been given morphine for pain and was taught how to give herself a �bolus� when it became to much to bear. She would simply push the button along her bedside and an extra dose would enter her vein giving her immediate relief Preliminary results of her surgery indicated that the disease had spread deep inside her bones and had caused a �foamy� substance to take over. However, they did not find that the cancer had spread to any soft-tissues or organs. This made her cancer unique and �extremely hard to diagnose� in that it presented itself as Osteogenic Sarcoma, a bone cancer, but the cells themselves were not performing akin to that type. Further tests were going to be done in the lab under a microscope. Pathologists would report back to the Orthopedic Surgeon and Oncologists.

My family will always treasure a memory of a night in the hospital. We had been there not quite a week. Dad, Mom, Dee, Mike, Giga and I spent the night in Desi�s room with her nurse, Patty. A nacho party went on until the wee hours of the morning. Patty made her rounds and came back to resume the fun. I�d look to Desi and see her laughing and wish it were another time, another place. I went to sleep on my bed next to her window and woke up around 4:00 am. to see Desi sleeping peacefully and everyone else still awake, still having fun. My family needed this to �humanize� this whole hospital environment we would have to live in for God knows how long.

Desi�s primary nurses later became very dear friends who grew to know us in a way hospital staff do not allow themselves. We shared many things throughout those months. We knew about Patty�s boyfriend who wouldn�t commit and the problems she was going through. We went to Amy�s softball games and grew to love her as part of the family. Jean, a crazy woman, made Desi forget why she was in the hospital at times. Giga recalls a night when Desi sent her to the nurses station to ask for Colaise (a pill that relieves constipation caused from morphine). Handing Giga the little red pill, Jean quipped �Bombs away!!� and rushed off to another patient. She always spent every chance she�d get to come to Desi�s room, sprawl herself across Desi�s bed and chat. That is, until she�d think she�d hear the door open and she�d spring up out of that bed onto her feet in one second flat thinking it was mom who teased her constantly about having more breaks than anyone she knew.

Jean, Patti, and Amy spent every spare minute in Desi�s room, gossiping, joking, watching soaps, eating, etc. Desi loved every minute of it and we felt the hospital was no longer a cold and impersonal place to be, but a safe and comforting atmosphere; our second �home� and extended family.

We were blessed with the friendship of another wonderful person who was always there for us, just a phone call away. I met Tom Clancy, the author, on the computer when I worked for GEnie, an online service. Through a mutual friend Tom heard the news of Desi�s cancer and asked that I call him at home. From the first day we found out about Desi he was there for us, offering any help we might need, wanting me to call any hour of the day or night. Daily calls to his home kept him informed as to what the doctors were telling us, he would immediately call his friends; Dr. Steven Rosenburg, Chief of Pediatric Oncology at National Institute of Health (a world-renowned physician and author credited for being on the cutting edge in research and treatment of cancer), Dr. Norma Wollner, Associate Professor of Pediatrics at Sloan Kettering, and Dr. Curt Civin, head of Pediatric Oncology at Johns Hopkins. Each would give their opinion as to what I should and shouldn�t do. Each would have their own questions about Desi and asked that Tom call to keep them informed as well. I gained valuable knowledge from these doctors and they always told me to call whenever I needed. Dr. Greffe was more than generous in sharing information with these doctors.

Tom gave me more than direct contact with leading doctors in the cancer field, he gave me emotional support and the most precious bit of advice to think about: �Doctors are human beings capable of making mistakes. There are good doctors and there are bad doctors, just like there are good and bad people. Danise. Some know more than others. Keep this in mind and if you have any feelings that leave you uneasy or you question whether or not a doctor is being thorough enough, ask questions and if you�re not satisfied, change doctors. This is your daughter and you should have a feeling of confidence that she is getting the best care possible. Don�t leave any questions unasked.� These words echoed in my mind over and over for the next couple of months.

Each day that went by, Desi felt less pain. As Giga described it, �It was almost as if her body was crying all those months for someone to listen. When someone finally did, her body could rest knowing it would be healed.� However, each day that went by without treatment frightened Desi as she thought that the cancer cells were multiplying uncontrollably. She wanted her chemotherapy treatments to start as soon as possible. We were all feeling the frustration of having to wait.

We were told the doctors wanted a second biopsy to confirm their first diagnosis. We asked why they couldn�t take the tissue collected from the first biopsy, and were told they used all of it for the first pathology reports. Desi was not able to move around from the first surgery because of a leg splint covering her incision, and a neck brace. I worried what the second surgery could do. I questioned why she had to be put through this. Why not just start the chemotherapy on her now? They knew it was cancer, why wait until after she recovers from another surgery? I was feeling Desi�s frustration along with my own. My anger was building.

After listening to Dr. Greffe, I walked out to the lobby to with Lori and Gail, my co-workers. I voiced my concerns that the doctors were taking too long in getting to the actual treatment, and they sat and listened. They didn�t offer any advice or tell me not to worry, or say that things would be ok...they just listened, and that�s what I needed most of all.

The nurse came into the lobby saying she had been paging me, that Doctor Greffe wanted us down in the clinic conference room for a meeting and they were trying to locate Mike. She told me to head down there and that she would send Mike when she found him. When I walked into the room, there sat our Social Worker, Angie, the Oncology Fellow, the Orthopedic Surgeon, Dr. Greffe, Dad, Diedra and Mike. Dr. Greffe told me to have a seat. My stomach tightened wondering what he had to say after just holding a meeting with all of us in Desi�s room. What was it that he didn�t want Desi to hear? He proceeded in telling us that Desi�s cancer did not present itself to be anything they had come across before. She had over 16 sites with tumors throughout her bones. They were amazed that Desi was able to walk into the hospital when, according to all of her tests, should not have been ambulatory due to the amount of tumors she had. Tumor sites included one on the base of her skull, several in the lumbar spinal area, ribs, hips, long bones and tibias. He explained that with that amount of disease, she had less than 10% chance of survival. I gasped for air and kept a focus on my hands, not wanting to look at Dr. Greffe�s face. Maybe it was that I thought by not looking at him it wouldn�t be true. My thoughts of nothing being �real� overcame me again and I tuned myself out to his voice, just thinking that I needed to get back to Desi. I�m not sure how long I had been sitting there while the family was asking question after question but I raised my head and interrupted what was being said. I asked, if our regular doctor had caught this a year ago when we first starting going to him about her pain, would Desi have had a better chance of surviving? Dr. Greffe answered quickly �most definitely, yes.� I was brought back to reality at that point; my baby was going to die. The fault lay at the feet of our regular doctor who would not listen to Desi�s cries for help for more than a year. A man who chose the easy way out by saying it was nothing more than growing pains because he didn�t want to take the time to find out what was wrong. Because of him, my baby was going to die. I shouted out �Oh my God, please, God, no!� and kept crying out to Dr. Greffe �We TOLD him, we kept telling him something was wrong! WHY couldn�t he just help us?! whey couldn�t he just believe her?!� I flung myself against the wall and slid down to the floor huddled in a ball, sobbing and repeatedly asking why. Angie got up from her chair and sat on the floor with me, holding onto to me until I had no strength left to cry. Everyone sat quietly crying and watching, each with their own thoughts about the loss of Desi from their lives.

Dr. Greffe waited in silence, taking a deep breath every now and then. When he felt it was calm enough to resume, he informed us that Desi needed to be told and wanted to know if we wanted him to be the one to tell her. I said no, that I would tell her. He offered advice to all of us telling us to enjoy each day we have with her. I asked if she would be in pain and he assured us they have many types of medicine to see that she would not suffer near the end. Dr. Greffe said he and the other doctors would be outside her door if we needed them. I asked that we be able to wait until I went to get Giga from school, I wanted all four of us to be together when Desi was told.

While driving to Giga�s dorm I went over and over in my head how to tell my daughter she was going to die. How do you find the words. How do you comfort. How do you even try to explain something you don�t understand yourself. I stopped thinking of ways to tell her because I felt I would wake up at any moment and see that all of this was a nightmare. This can�t be happening, it is too horrifying.

Arriving back at the hospital I walked slowly to Desi�s room. We gathered around her bed and I told her I had something to tell her. She had been smiling but her face quickly turned to fear. I spoke slowly and told her her chances did not look good. Desi�s eyes filled with tears, �Mommy, NO!� I held on to my baby while she cried, and never wanted to let go.

The first week we were in the hospital I walked around in a daze. I had thoughts running through my head that I couldn�t get rid of. Deep down, masked by the positive words spoken from my mouth, and under all of the inner-strength that appeared to be written on my face, I was in a dark place. That is the only way I know to describe where my life was at that point. Thoughts that my Desi would not be with us next week, or the week after, took me to the point of desperation in which I focused on trying to find a way to make life as it should be; a mother dies first, not a child. I couldn�t bear the thought of Desi going to heaven without me there. I needed to know that she would not have fear that she would go alone. My plans took me to thoughts of not knowing when would be the right time to leave; would Desi need me most during her last hours? Or should I go now so that she wouldn�t be afraid when it was her time, and she would know that I would be waiting for her. I would not let my baby go alone. And what would happen to Giga, Mike, and my family? Would they understand? Would Giga know I would do the same for her? No, it was not rational thinking, but who can think rationally when told their child has cancer and is not expected to survive.

I did not tell anyone these thoughts until a couple of years later I�m not sure if every mother feels this, I only know it is what I felt. It was only until I looked at Desi one day, listened to the tone in her voice and saw the confidence and hope that drew me back to a lighter place. Though dim, I couldn�t help but look into her eyes and see this little light of hope and I knew that I, her mother, out of all people could not possibly think anything less. �Mom, I think we need to have a makeup party. We NEED it!� she told me after studying my face. I laughed and swallowed the lump in my throat, promising her I�d go home and get all that we needed. What right did I have thinking her life was going to end? Doctors can only make assumptions based on statistics, but Desi is strong, determined, spiritual, and confident. From that day on I joined her in that thought process and we made sure people knew we had no patience for looks of pity, tears or sadness.

After leaving Desi with the anesthesiologist and nurses for her second biopsy surgery, I walked up to the waiting room and released the anger and fear I had been hiding from her. I lost control and threw my purse across the large room scattering the contents, I cursed and yelled WHY!!?? I am aware, now, that I frightened my dad. He had no answers, but he held me while I cried. In the deepest emotions one can feel, there are no words. Dad is the type of person who keeps his fears hidden but the silence and empty stares showed more than he had ever allowed before. Perhaps this was because nothing this horrible had ever happened to us. We bad gone to visit Auntie Inez�s grave many times and always talked about how lucky our family is that we have had no tragedies for as big as our family was. I felt Dad hold me in that waiting room and thought back to one of our visits to Auntie Inez�s grave. A woman was lying down on the grass beside the headstone, sobbing. We couldn�t help but feel pain for her and wondered who had left her life so empty. It was quite a while before she left, when she did we walked over to the grave. We figured it was her young son and wondered how his short life was taken away. I turned to Dad and said, �There could be no greater pain than to lose your child.� Dad agreed and we left quietly. The thoughts of that woman had left my memory and now I found myself thinking about her and echoing those words again. This time the words had more depth and pierced my heart.

Mom, Dee, Chase and Chantal were walking down the long hallway towards us. I could see something clutched in mom�s hand. She wasn�t looking up, just had her head held down walking slowly.

She held onto a stuffed animal much like the one named �Fang� given to Desi by Paul, Giga�s boyfriend, during her hospital birthday party. She bought two of them, one for herself to bold while Desi was in surgery and one for me. Trying desperately to feel as close to Desi as possible, these were the little things she felt would help herself cope.

My family felt comforted when one of the Orthopedic surgeons came to sit with us explaining what was happening in the operating room. She described how this cancer had literally eaten away Desi�s bones and left a foam-like substance behind. I watched dad listening intently to her every word and my aunt Marsha asked question after question hoping to understand how, what, and why. I sat in silence.

That afternoon we were told that it was confirmed, it was Osteogenic Sarcoma and they would immediately start chemotherapy. The room was crowded with all of my family standing around waiting for news of what was to happen. Dr. Greffe asked if he should continue with the family present or talk in private. I assured him that it was ok to tell all of us as we were family and all praying for the same thing -Desi�s health. He nodded and continued. We were all informed that this would not be an easy road ahead. Desi would receive high-dose chemotherapy consisting of 12 cycles which would be approximately a little over a year�s time. I saw my dad�s eyes light up and I knew what he was thinking; she has at least a year then? I wanted to tell him this was not guaranteeing that she would make it a year, only that this is what the treatment plan would be as they were taking jabs in the dark as to knowing what would help Desi. Uncle Tom stood taking notes knowing that each one of us would hear something different or not hear something Dr. Greffe said, and he wanted to make sure we were well informed and if we had any questions as to what Dr. Greffe said about this or that, we�d be able to refer to the notes later on when our heads were a little more clear. I had my eyes on Desi�s the whole time and looked away for a minute when Dr. Greffe explained these chemotherapy agents could cause another cancer years from now. Dad said, �just give us that time and we�ll deal with it then.� Desi smiled. Dr. Greffe also informed us that since Desi�s cancer was not the textbook type he would present her case to the �Tumor Board� where all the physicians meet to discuss a certain case which was hard to diagnose and each gives their opinion or any ideas they may have regarding the condition. The physicians learn from these tumor boards and sometimes it can be a benefit to the patient in that a doctor may have knowledge other physicians might not have. Dr. Greffe said he would cross his fingers that the tumor board would be able to help learn more about Desi�s type of cancer and the treatment she would need.

I had a thought being formed in my mind that I would not share with anyone; Since Dr. Greffe had called doctors around the United States consulting with them about Desi�s cancer and none had ever seen her type, had they just conferred with the pathologist after the second biopsy throwing their hands up in the air? Did they say �Ok, since it doesn�t look like this or that, lets just call it Osteogenic Sarcoma and go with that.� This vision ate away at me and the advice Tom Clancy gave me narrated the scene in my mind.

I was concerned about Desi losing her hair from chemo and discussed this with my cousin, Gil. He told me of a co-worker who had undergone chemotherapy and didn�t lose any of his hair because of a �cold cap.� Gil didn�t know the details but that�s all I needed to approach Dr. Greffe with my request for one.

Dr. Greffe explained that chemotherapy targets areas that are warm and therefore, the cold cap prevented chemotherapy agents from going to vital areas where cancer cells could be multiplying. He warned me that although it could save her hair, there could be cancer cells in the head area that we don�t know about and the cap would prevent them from being killed by the chemo. He also warned me that this cold cap had been ordered by the FDA not to be used by doctors until further studies could be made. But, if I really wanted this for Desi then he would look into finding one for me.

The day she was to start chemo, the head nurse came to me and said she spoke with Dr. Greffe regarding the cold cap. She wanted to let me know that they found one at another nearby hospital. She asked if I still wanted this for Desi and if so they would send for the cap or they could make one for her. I had thought about it all night and after discussing it with Desi, we decided losing hair was not as critical as not getting every last cancer cell in her body. The staff was pleased with our decision.

That night, she began her first round of chemo. The family gathered around to try and calm her. Desi was anxious to start treatment but the unknown was frightening to her. �I�m nervous, mom� she�d say while I held her in my arms. �I am too, sweetie, but I�m here for you. We�re all here for you. We�re going to go through this WITH you and you�ll never be alone.�

I�m not sure what we expected would happen but we all sat around Desi like a group of kids listening to a Story Teller. My eyes followed the slow drip down to a wider tubing creating a bottle-neck but maintaining the level as the fluid continued to flow down the long tubing leading to Desi�s hickman in her chest. I tried to think of this fluid as medicine, but somehow it just didn�t comfort me the way I thought it would. Chemotherapy is a toxin, it can�t distinguish between the good and bad cells and therefore kills everything. Desi�s body was being violated again.

Burton Vickery was Desi�s conductor for a couple of years in the Colorado Youth Symphony Orchestra. He took to Desi right away when she started studying under him. A few years back when Giga was going into college, Burton�s wife, Paige, called to get some information saying she was the coordinator of the annual Denver University (the private college Giga attended) Symphony Retreat in Estes Park. As we started talking about Giga being a graduate of Colorado Symphony Orchestra, Paige said that her husband was the conductor of the younger group. I mentioned Desi�s, name saying Desi loves Burton and finds CYSO an exciting challenge because of him. Paige suddenly realized who she was talking to and told me Burton thinks the WORLD of Deseree and thoroughly enjoys her talent and personality. Burton had told Paige about Desi when she first joined his String group a few years back.

Paige, Burton, and Giga formed a close friendship while attending college. Burton grew to like Desi more and more. When he heard about Desi�s cancer, he immediately volunteered to play in a quartet Giga�s Professor and Desi�s private teacher, Rich Slavic, were getting together to give her a gift of music to help her through. This group was made up of four people who knew and loved Desi: Rich, Burton, Rich�s wife, Kitty, and Giga�s close friend from D.U., Shyla. This beautiful gesture meant a great deal to Desi and she looked forward to having this private concert, to calm her fears.

The quartet was to perform on a Wednesday. Paul called from school early one morning to tell Giga the horrible news. Over the weekend, Burton was involved in a motorcross event that took his life.

I remembered something someone told me once; �Yes, Desi has cancer but even with our health, none of us knows whether we�ll be here tomorrow.�

We all went to the funeral and Desi handed Page a beautiful white rose. Page hugged her and they both sat crying. I felt the words Page must have been thinking; No one is certain they will see tomorrow.

Medicine had made a great advancement in treating cancer patients. We were lucky enough to have been able to take part in two new drugs to combat the nausea that chemo brings. One, called Ativan, took most of the nausea away but it left her brain in a place where objects of different shapes, colors and sizes ran rampant. She would see things and be frustrated that she couldn�t make any sense of it, explaining, �I feel like a triangle trying to fit in a square, Mom.� Since Desi was always having to explain what the doctors said or what a certain medical term meant, I figured this was all I needed. I�d never know anything going on with Desi way out in geometryland. Next drug, please! Zofran was the next option. Desi found that to work wonders to combat the nausea.

She wanted to know in medical terms what was happening, or what would be happening to her at all times. Some of the doctors tried sugar-coating these procedures and Desi grew increasingly frustrated that they were not being up front with her. She had a keen interest in the science of the body in school and knew a great deal about how our body works and the scientific explanation. After speaking to the doctors about giving Desi answers in the way they would their peers, I realized this left ME in the dark and I had to have Desi explain things. I felt comforted knowing Desi was in such control of her treatment. However, there were times that we knew things were being held from both of us and our suspicions grew more intense. Not to be outdone by the system, we found our own way of getting every bit of information we could. Each time we were sent down for x-rays or test of some sort, we were given her �chart,� a book approximately two and a half inches thick to take with us. We had the drill down pat; roll off like a good patient and mother, wait until we passed the double doors, look around for any sign of a white coat and when the coast was clear, READ! Late to our test or no, we were going to be well informed.

We met Sadie around this time. Sadie was three years old, a little tiny thing who didn�t really talk but when she did, everyone hushed because it was such a tiny, quiet little whisper. She was precious. Her grandmother had custody of her and was living at the hospital. Sadie never smiled and it was obvious she was always very, very ill. Her grandmother was an energetic woman who loved to laugh. She made Sadie do things Sadie didn�t want to. A fond memory of her is one that probably kept Sadie living as long as she did. I was in the kitchen making toast and the grandmother walked in with Sadie lagging behind pushing her IV pole. Sadie kept telling her �I sick, no push it!� in her little squeaky voice. Her grandmother kept on with what she was doing, saying �You�re not sick, you just think you are, Cedes, now push it, woman!� Sadie would much rather lay in bed all day and night. Her grandma didn�t want her to live like this. She wanted Sadie to fight and didn�t treat her like she was ill.

We were taught to give Desi daily shots of GCSF (growth factor that increases the white cell count in order to build the immune system that the chemo had destroyed.) and heparin (a substance to thin her blood to prevent clotting). It amazed me that after all the things Desi bad been through, she dreaded these most of all.

It was important that Desi�s combined blood counts (CBC's), and absolute neutrophil count (ANC�s) were constantly monitored. We were taught how to calculate what they were by looking at the lab report.

Since chemotherapy attacks the cells that reproduce the fastest (cancer cells reproduce themselves quickly but healthy cells do as well and chemotherapy cannot determine which is which, therefore, attacks all) Desi�s mouth suffered what they call �sloughing.� The lining of her mouth and stomach began to shed and became inflamed, causing her to be in a great deal of pain. She received Acyclovir, an antibiotic, to help combat this condition each time she underwent her treatments. Desi began to lose weight because was not able to eat much at this point. She also had to endure numerous bouts of mouth sores (mucositis) due to her white cell count dropping.

Desi was given morphine because of her mouth, stomach and recent surgery. One night I was awakened to the voice of my mom asking Desi to repeat something she said that mom couldn�t understand. I opened my eyes, sat up and saw mom helping Desi out of the bathroom with her IV pole. Desi stood pointing at her bed mumbling something. I asked her to speak slowly and tell me what she wanted. Desi kept her eyes focused on her bed, pointing and said �There, right there by the shadows.� �What shadows?� I asked. �Right there. Lots of shadows.� Oh my God, I hate to admit what I thought of in those first few moments. I laughed about it the next morning. I thought maybe she was seeing spirits who wanted her to walk to the light. Ok, maybe I watch too many TV shows but it honestly crossed my mind and I was beside myself I got up and helped her into bed. She sat on the edge for a few seconds and kept poking her finger in her afghan the people at Martin Marietta bought her. I told her to lie down and just relax, everything is ok. I covered her up, turned around to go back to my bed and looked at mom who shrugged and shook her head.

The next morning when Desi woke up, we told her what happened and she said she was talking about the afghan. The dips in the design made little shadows all over because of the way the bathroom light was hitting it. She was trying to tell us that she wanted to go over there to sleep. I hummed the Twilight Zone tune and we all sat there laughing. Next drug, please!

It was ironic that we hear a message from Children�s Hospital on our telephone message machine saying they wanted Desi to come in for an interview to be a volunteer. Desi had made several calls throughout the year and had sent in an application to be a part of the Volunteer group there. Each time she inquired, she was be told they had no openings. Now, when she was a patient, they needed her. We decided what better person than Desi to be able to help with cancer patients now, so she requested that she be able to help on days she was released. The volunteer office told us Desi would not be able to do this because they go by seniority. People who have been there the longest are assigned to the cancer ward. People who have no idea what cancer patients are going through help patients who are diagnosed with cancer. Life is funny, isn�t it?

Desi also received a letter saying she won third place in the Denver Public Schools Anne Frank Creative Writing competition sponsored by the University of Denver. She entered a poem she wrote months before she was diagnosed. Governor Roy Romer�s wife presented her with a certificate at a public ceremony.

Since several vertebrae had collapsed on Desi�s spine due to tumors, she was made a cast formed to separate each one so they wouldn�t press on nerves. She was made to lie down on a table with only two straps holding the middle half of her body for support. This made her back curve inward to open the vertebrae. The doctors took turns on each side of the table wrapping cloth soaked in plaster up over her body and down around underneath. This took a couple of hours to mold her body. Then it was sawed off and sent to a fabricator for a plastic cast. It only took a day to make and we went in for fitting. I felt sick when I looked at this apparatus which would become part of her body from here on out. I knew Desi bated the thought of having to wear it because it could be seen through her clothes. The cast was made of thick plastic and covered from above her breasts down to the middle of her hips. It was a hideous sight, one that I hoped would not be permanent. I didn�t want Desi to feel worse knowing how I felt so I joked with her, saying she was now ready for battle, and with that body shield - nothing could stop her!

In the next three months she was scheduled to receive several different kinds of chemotherapy, each with their own risk of damaging organs. One in particular, planned but not yet given, was Cytoxin. We were told that this would damage her hearing and would be given up to a certain point. Her hearing would be dramatically decreased. They would stop the treatment and depending on whether or not x-rays showed it to be working, we would be given the choice to proceed, causing deafness. Just the thought of Desi never being able to play her cello or listen to her fifties music again was tearing me apart inside. I tried not to think about his round and felt when the time came we would deal with it then. Take each day as it comes is something you learn when cancer affects you or someone you love.

Each day I�d hear someone say �Why, out of all people, why Desi?� People who are close to Desi know what a loving and protective person she is. Desi has to take care of everyone she loves and never takes advantage of life. She cherishes her friendships and family and always makes sure she is there if anyone needs her.

I remembered a time when she was in junior high school and each morning while I was getting ready for work she�d sit and watch TV. Every so often they would have a segment on world hunger, child abuse, cancer, etc. I�d walk into the living room to find her crying and asking why. There were times I�d have to call into work to tell them I�d be late because Desi was in her �melancholy mood again� and I didn�t want to leave her being so upset. I�d sit and talk with her, hold her, and try to comfort her before sending her off to school. After a couple of years I started to worry that Desi was taking these things too hard and wondered if she might need some counseling. I started trying to reason with her saying she can�t make all things right in the world, she can�t take everyone under her wing, and she had to stop feeling so down about things she has no control over. I�d tell her to pray. That would be her way of helping to make the world a better place. I let her know that if the world had more Desi�s, we would never hear about horrible things going on.

My Desi, such a beautiful soul. I�d watch her sleep at night feeling so blessed and thankful to have her and Giga. We are very lucky as parents to have girls who have the warmest of hearts. I�d stroke her hair praying that these worries would leave her and she could just enjoy being a child.

I decided to talk to the Psychologist at the school where I worked regarding Desi. After listening and asking questions, the Psychologist told me not to worry. There are certain people who are more sensitive to the problems of others. She reassured me Desi was fine and a beautiful human being.

After remembering this time I found the answer to everyone�s question as to why it bad to be Desi who got cancer. She is the only one who would be strong enough to handle it. I think God knew that had it been one of us, Desi would have fallen apart and begged for her to be the one instead. She would not have been able to cope with any one of us having cancer. By her having it, its her way of taking the pain from someone else.

Desi�s hair started falling out her first round of chemo and rather than prolonging the inevitable, we decided to cut it all off. I swallowed hard when I saw her beautiful locks of hair falling to the floor. She looked up at Mike and said �At least mine will grow back!� She never showed that this bothered her but she later told us that she didn�t want to look different than anyone else because that would remind people she was sick. Before her hair loss, she didn�t think she looked sick, and people didn�t treat her as if she would break if they touched her.

Susan, Desi�s best friend, was always at her side. She�d take Desi out when she came home for a day or so. Susan always treated Desi the same as before cancer and Desi loved that. Bald head, no eyebrows, no eyelashes, looking like �Uncle Fester of the Adams Family� as Giga would say, Susan would tell Desi �Wanna go do somethin��?� and off they�d go. They went to games, restaurants to meet friends, and to the Homecoming dance together. Susan will always have a big place in my heart because she gave Desi that connection to her teenage life.

There were others who, in small ways, made sure that Desi knew they had not forgotten her. Among her visitors during treatments was a group of musicians from the Colorado Youth Symphony Orchestra (CYSO), the group which Desi bad been part of until her diagnosis. She was forced to miss the last concert of the season because of her cancer, so several violinists, violists and cellists brought the concert to Desi during one of their breaks from rehearsal. The group of 10 or so musicians set up in the hallway of the Oncology ward and played several selections from the concert Desi should have been playing with them. Other patients on the wing also came to their doors to appreciate the free concert, as well as nurses and other staff members. Although she was too sick to show it, Desi was very grateful for the surprise visit and loved every second of her short time with friends from the orchestra. On the night of the performance, the conductor left Desi's seat empty.

Each night while she slept I would gently kiss her head and softly rub my lips on her warm bare skin. I missed her long curly locks but I loved doing this at night. Looking at her face with no eyelashes, no eyebrows, and head with no hair, I thought she was still just as beautiful as before. I�d smile when I think of us trying false eyelashes on her one day, cutting each lash a different length so they would look natural, or so we thought. I realized then that God is a much better makeup artist than I am, and we gave up on that idea.

Desi wore wigs but only on special occasions. It didn�t bother her to be out in public with her shiny head and a little headband for decor. People stared and we learned to just look back at them and smile. Giga loved to stare back at people, making them feel that something looked really strange about them, too.

After Desi�s first round of chemo we were allowed to come home for a couple of days to wait for her blood counts to return to a safe level before starting her second round. This was the procedure for her treatment protocol during the next several months.

More often than not we had to rush back to the emergency room on these brief home �visits.� Either it would be an infection of some sort, shooting her temperature up to dangerous levels, or she would start bleeding out of control due to low platelet counts, and would need platelet transfusions or blood transfusions when her hemoglobin levels fell. Later on we were taught how to hook up and administer IV�s so that she could continue receiving antibiotics at home when they felt her infections were under control. Her room was looking more like a hospital room each time we came home. All around were boxes of syringes, sterile pads, alcohol, betadine,� tubing, IV pole and machine, saline solution, heparin bottles, needles of all sizes, IV tubing connectors of all colors and shapes, tubes for blood samples, and a hospital bed. During each stay at home we were visited by a �Homecare Nurse� who would bring us more supplies: IV bags filled with antibiotics and instruction books. I never felt comfortable being home. It was a frightening feeling to know the nurses and doctors were not a button away should anything go wrong. I was always afraid of making mistakes while administering Desi�s IV�s. I woke her up in the middle of the night so she could watch to make sure I was hooking up the right tubes and connectors. This was a time consuming process and it was extremely important that no mistakes are made. Heparin bottles looked exactly like saline solution and I was always afraid I�d be too bleary-eyed in the middle of the night and mix them up.

Mike made syringes the night before. There were numerous times Desi�s blood started clotting and I�d be up for hours in the middle of the night trying to break the clots out of her tubing from her chest. Syringes filled with 2 cc�s of this, 3 cc�s of that, lay across the floor on a sterile pad waiting to be used. Her daily shots were not getting any easier. Desi�s skin was becoming tough and harder to penetrate. We were never really sure if this was due to the chemo or not.

Several times, her blood would cause us to panic and rush back to the hospital. While I was making dinner one night I heard Desi call from her bedroom. I rushed in there to see her pinching her nose with a towel soaked in blood. I told her to sit up and pinch the bridge of her nose while I called the doctor. I was told to keep doing what we were doing and if it didn�t stop to call again. I sat with her for over an hour waiting for it to stop but it didn�t. As I was walking back into the living room to call the doctor again, Desi cried out my name and I knew from the sound that she was scared. I ran back in there to find large clots all over the bed and her hands. The blood was surging out of her nose and the clots became bigger. It was too fast and too much to keep up with. Desi was extremely frightened. I ran to the phone while Mike got her in the car. I was told to get here there as soon as possible. They were going to get a room ready for her to be admitted.

When we got to the hospital, Desi had lost a large amount of blood and was very weak. She was taken through the emergency room and up to her room for blood transfusions. Amy, her nurse, was just getting off duty after working her 12 hour shift. She saw the condition Desi was in and immediately grabbed an ice pack and held it on Desi�s nose while using her other hand to keep cleaning up the blood that was still flowing from Desi�s nose. I kept reassuring Desi she was where she should be and everything would be ok. Amy stood there trying to get the bleeding to stop for over an hour. She was frightened as well. Desi required two transfusions that night.

Blood tests revealed that Desi�s platelets and hemoglobin were at a dangerously low levels. This is what caused her hemorraging.

It was not unusual for Desi to receive blood transfusions, she received them quite often, but this was by far the most frightening.

During the first month of treatment, and on one of our home visits, I couldn�t find Desi in her room or bathroom. I walked into my computer room where we had a sofa and found her lying there with tears running down her cheeks, staring out the window. This memory will forever stay in my mind. I laid down beside her and held her in my arms. We didn�t say a word, just quietly cried. After awhile Desi said �I was just laying here trying to remember details of my life. I don�t want to leave anything out, I want to remember everything that has happened in my life, Mom. I�m not afraid of dying, Mom. I just want to soak up the memories.� This was the first and last time �dying� would come from Desi�s mouth. I think it was important for her to deal with the chance that this may be what will happen. She thought about it, dealt with it in her own special way and put it on the back burner. I didn�t want to hear these words but I knew she had to say it in order to move on to the next level - healing.

We soon learned that Desi knew more about her body than the doctors at times, and they grew to trust her intuition. Everyone was amazed when she would come down with an infection and she�d tell them exactly which antibiotic was needed. After test results came back from either the lab at Children�s or another state because they were unable to detect what type of infection she had, the doctors and nurses were shocked that Desi was always correct. Desi always told me she just knew her body. I saw the change in doctors and nurses in that each time Desi would suggest something about what she needed, or what she thought might be happening to her body, they ordered immediate tests because always felt Desi knew what she was talking about, and warned her that she had better become a doctor.

One great example of this knowledge was when she noticed she was very sore around the area where her metaport was, and underneath her arm. The skin was swollen and warm to the touch. She kept telling me she thought it was the methotrexate (the chemotherapy agent that was last given to her) and felt that maybe it leaked out underneath her skin from the tubing. We took her to the emergency room where they prepared to draw out the fluid causing her swelling. A thick black substance came out of each syringe they filled. Everyone in the emergency room was clueless as to what it was. Desi kept telling them she thought it was the Methotrexate but they kept telling her that was highly unlikely. Chemotherapy can�t leak out of the IV. They sent tubes of this black substance to the lab and placed a call in to Dr. Greffe. Desi was admitted to a room, and the attending physician came in with the lab results; Methotrexate.

Another surgery was schedule to take the metaport out and place another line in her chest. Surgeons found that the metaport did in fact have a small hole underneath her skin and the Methotrexate did leak out in her last treatment. Dr. Greffe met with us explaining that it was drained in time and there would be no permanent damage but if it had been left in there, it would have ultimately burned all of the tissue inside her chest and underarm.

Dr. Greffe informed us that the Tumor Board had met and all doctors, interns, and Physician Assistants agreed that Desi�s case was unique. After a long discussion and examination of her pathology slides and x-rays they confirmed the diagnosis, albeit not the norm, Osteogenic Sarcoma. Dr. Greffe said he was sorry he didn�t have good news for us from that meeting. He said he would continue to speak to doctors around the world regarding Desi�s case.

Living at the hospital enables you to meet other families and patients, getting to know them, and sharing each other�s pain. These families become your own and to this day, we feel this was a blessing in disguise. We learned something about life that not many are able to experience. We learned to love others, we learned that a person we would not give a second look to while passing on a street could be such a wonderful part of our lives.

I sat with Mike outside in the garden area around midnight one night. Looking up to the floor Desi was on, I started crying and told Mike Desi was the only one who didn�t have a chance. I told him about being in the surgery waiting lobby earlier that day while talking to Tom Clancy. After I got off the phone I sat and listened to other families talking about what their child was in for. Spinal surgery, burn victims, lung drainage, etc. Each of these children had a chance. They would most likely walk out of the hospital and still be able to think about what they would do tomorrow, or the next day, or the next. Desi couldn�t. Desi was the worst. As I was telling Mike this, I remembered something my mom always told me �A person may think his or her life is bad, but there is always, always someone who has it worse.� I put my face in my hands and sobbed because mom was wrong.

Dad chose to stay outside sitting talking to other families day after day, night after night. This was his way to cope for himself. When I went outside for a cigarette, Dad would point out or introduce me to people and tell me what they were there for. Day after day I would meet others and we began to share our feelings of despair, hopes, dreams, plans, good news, and bad news. We would laugh and cry together, support one another and pray

I grew to learn that Mom was right after all.

Cathy became a close friend. Her son, Chad, had a brain tumor. We�d spend time sitting outside with him, trying to get him to acknowledge his surroundings. Chad was a normal, feisty eight year old boy just a couple of months before. Now he was barely able to sit up or eat and could not speak, he was only able to make sounds every so often. He was suffering from headaches for quite a while and it was beginning to show in his school work and how he related to other kids. Cathy knew his headaches were not normal and tests concluded he had an inoperable brain tumor. With chemotherapy and radiation they would try to dissolve it. He was a beautiful little boy. I used to tell Cathy I wanted his eyelashes for Desi since boys don�t really need them.

Cathy and I spent a lot of time together, as she was living at the hospital as well. Her husband lived in another town with their other two children. He came to see her and Chad every couple of weeks. Each time we�d meet outside, she�d be sitting talking with Dad and Mom and would look up to see what look I had on my face. Each time I would talk to a doctor they would shoot my hopes down by telling me the reality of Desi�s illness. We�d sit and talk about how doctors aren�t God. Both of us knew our children weren�t supposed to be here and yet, here they were, living and fighting.

Each month that would go by Chad learned to do things he had lost the ability to do with his treatments. We watched him go from a drooling little boy with a blank stare to laughing, giggling, and eating. Mike showed him how to do the Spock wave separating the fingers down the middle. He loved to see Mike do this and would try the wave himself. Chad was still not able to use his arms or hands but we were able to witness a happy event when my mom and Mike had a priest come to the hospital to pray for Desi. He had just given a mass for cancer patients at a church on the other side of town. A teacher with whom I worked told me about this special mass. I planned to go but at the last minute, Desi had fallen sick with a high fever so Mike and my mom went. The Father was kind enough to leave immediately after the mass to come pray with Desi. After he was done my mom brought him outside to meet Cathy and Chad. The Father raised his little statue of St. Peregrine (the saint for cancer patients who is very much a part of my heart and soul to this day.), praying over Chad. Suddenly, Chad lifted his arm and tried touching the statue. Cathy and I looked at each other and mom motioned for everyone to look while the Father was still saying his prayers. Cathy started to cry and put her hands over her mouth, smiling. It was an emotional experience and I�m thankful to have been there to see it happen.

We met another family who was faced with a terribly difficult decision to take their 3 year old daughter, Desiree, off of her respirator. She had suddenly become ill at home and quickly went downhill. She was now suffering renal difficulties. The doctors told the family they had no other medicine for her and she could either get better or die after taking her off the respirator. They tried everything. The family would come outside and comfort one another. My stomach tightened each time the large group would come out of those doors, because we knew they had just met with the doctors as to Desiree�s condition. Their cries told us nothing had changed.

Mom went over to comfort Desiree�s mom one afternoon and tell her we were praying for them. She was told they still couldn�t make their decision and were just hoping Desiree would suddenly take a turn for the better. Mom took out a rosary her grandmother gave her years ago and gave it to her. The next afternoon we watched some of the family members come out smiling, laughing, hugging, and carrying on. The mom came out later and told us that while she was sitting there watching Desiree and holding onto the rosary praying for Desiree to start being able to urinate (that would be the sign that things were starting to work as per the doctors), she bent over to touch her and felt the bed. It was wet, Desiree had wet the bed. The mother came downstairs and told mom �the pee God helped my Desi!

Desiree had a long, hard road to recuperation but she walked out of Children�s Hospital six weeks later.

Our Desi was having a lot of difficulty during her treatments. She was in and out of surgery a number of times. Infections were hard to diagnose and blood tests were having to be sent out of state to determine what kind of antibiotic might work. Each time she had surgery, another scar would mar her perfect china-doll skin. I used to tease her that I wanted to set her out on our lawn, make her drink water and spin her around to water the lawn because she had so many holes in her body. Another one of her doctors, Edie Albano, was just as discouraged and saddened as we were about one of Desi�s infections caused from another tube in her arm. Edie was a beautiful woman in her thirties with long flowing black hair. It was always comforting to deal with her because there was an aesthetic feeling about her, not anesthetic like a doctor. She sat at the side of the bed and told us they weren�t sure, again, what type of infection Desi had and that she would need to go back into surgery to remove it and try to find another large vein to place another tube. I was feeling overwhelmed by all the problems Desi was having and didn�t want to think of her having to go through another surgery. I rested my head on Desi�s stomach and cried saying this was all just much too much. Dr. Albano sat there and let me get it out while Desi stroked my hair.

Desi was on her way to surgery but before they took her out of her room, Giga told her she wanted her to have her Gamma Phi Beta Sorority pin and told Desi it would be waiting for her when she got back. Desi cried knowing how much this meant to Giga. As they were wheeling Desi�s bed down the hallway, I stopped to talk to one of the nurses. I noticed Dr. Albano bent over Desi, holding her hand talking to her when they passed the nurses station. I finished talking and started walking towards Dr. Albano and Desi. I heard Dr. Albano tell Desi she�d see her later, while she was being rolled down the hall Dr. Albano stood there staring at her. She turned back around facing me and her eyes were filled with tears. She wiped them, noticed I was looking at her and smiled letting me know things were going to be ok. I hold this moment close to my heart because it proved to me that doctors have feelings that cannot be stifled at times. I felt Desi was in safe and loving hands.

Everyone loved Desi and admired her strength against such odds. They were always talking about what a fighter she was and how she had no self pity. Desi was an inspiration to everyone around her.

It was late Spring and we were feeling confident that our faith would see Desi through. So much so that when we had an appointment with Dr. Greffe in the clinic one day, Dad went with us. Dr. Greffe told us he had spoken to more doctors and read more studies on Desi�s type of cancer. Dr. Greffe kept saying �there are no survivors of your type with the amount of tumor activity you have, Deseree. I�m sorry.� Desi kept smiling and didn�t bat an eyelash. �I guess I�ll be the first then!� she said. I agreed, my Desi would be the first. Even after he told us her chances had fallen far below 10%, we were still confident these were just stats, not Desi. No one knows how Desi will do.

The chemotherapy that would damage Desi�s hearing was coming closer and I was getting scared. The haunting voice in the back of my mind kept telling me to ask how many pathologists looked at Desi�s slides to determine what she has is Osteogenic Sarcoma. I kept thinking of asking that her slides be sent to another pathologist for a third opinion just to make sure. I discouraged myself from asking the doctors these questions for months because they felt reassured their diagnosis had been confirmed with the second biopsy. Who am I to ask to have them checked again? How many times is considered confirmed? Yet, another voice echoed in my mind, that of Tom Clancy saying there are good doctors and bad, some know more than others, and don't leave any questions unasked.

I decided to confront the doctors and do exactly as Tom had advised before Desi faced losing her hearing. I knew a lot of time had gone by and Desi�s chances had gone down drastically because of the amount of tumors she had, but I needed to do this. I needed to make one last attempt before I could accept their diagnosis. I had this vision in my head of doctors throwing their hands up in the air saying Osteogenic Sarcoma because they couldn�t figure out what else it could be. It was important for me to know just how many pathologists took a look at those slides.

I discussed my concerns with the family and called our insurance company to find out if they covered a third opinion. The woman who handled our insurance told me to go for it.

I walked into the clinic and asked for Dr. Greffe but he was not on duty that day. So I met with Dr. Odom, head of Pediatric Oncology. She listened to my concerns and when I asked how many pathologists had looked at Desi�s slides, her answer was �One. She is a very good pathologist who reads the slides of everyone in Oncology. A very good doctor.� I was in shock. I asked her why they hadn�t thought of having someone else look at the slides especially when it was so hard to diagnose they first biopsy they took? She said they felt confident in the findings of this pathologist. I was more determined than ever to send those slides off for another opinion and asked her to send them to another hospital. Dr. Odom did not give me a fight,and said she understood my concerns so she suggested they be sent to the Mayo clinic because they had a doctor there who is highly respected for his work in diagnosing different types of cancers. I ordered them to be sent immediately.

My conversation with Dr. Odom would play in my mind several times during the days that followed.

Desi sat choking down the abundant amount of herbs and vitamins I had her take each day after researching what each one helps. Dr. Greffe walked in to see Desi wincing. �My mom has me on another pill, Dr. Greffe. This time its SHARK CARTILAGE.� Dr. Greffe laughed and sat down to watch her gulp them down. Desi always tattled on me when I had another �remedy� for her to take. Dr. Greffe always said �Go for it, there have been no studies done that say they can harm or they don�t work. If I can help in any research of things you�re thinking of putting her on, just let me know and I�ll be glad to help.� Dr. Greffe had done his own research on most of the things I was giving Desi and saw no reason for her not to take the Shark Cartilage, explaining what studies say it does. I smirked at Desi and ordered her to drink up! In retrospect, I guess being on about 30 pills a day in addition to what the doctors had her on was a bit much. It was never the type of pills she minded, she believed they worked too after reading research. It was the amount that overwhelmed her. Each time I�d walk in with a Health/Science magazine she�d cringe. There were many times if I didn�t sit there and watch her, I�d find vitamins and pills stuffed in her pillowcase, pockets, socks, etc. To this day I�m finding pills stashed away in places I couldn�t begin to imagine her being able to get into. If there�s a will, there�s a way!

Along with our herb treatment, Desi, Giga and I got into the Ayurveda way of healing the body. Armed with a book by Deepak Chopra, I was convinced this type of living could only bring healing to Desi. She agreed after reading his book. I called the clinic in Massachusetts to see if we could get her in there for treatment to learn different ways of cleansing toxins from her body. After speaking in great length to one of the physicians there, he told me that they don�t take children her age but asked if he might be able to talk to her. He was thinking she could benefit from this if she was mature enough to discipline herself After she spoke with the doctor, she handed the phone back to me. The doctor said he was giving his approval to admit her to the clinic. He told me when we were ready to come out to tell the admitting office she was approved and would leave documentation of such in the files.

My family was excited that Desi would be attending this clinic. Mom always handed down herbal remedies from her upbringing and saw no reason why this kind of treatment wouldn�t also help. We would wait for a break in chemotherapy before we would make our appointment.

It was a Friday evening and Desi was excited to be able to come home for a couple of days to wait for her counts to return. Dr. Greffe told her to enjoy the time at home. He would see her Monday for her tests; CT scan, MRI, skeletal survey, bone scan and CAT scan.

That night we went through our ritual of saying our Novenas, rosary and several other prayers. This would usually take around forty-five minutes each night. I went to bed and prepared for my own ritual of awakening several times a night thinking I heard Desi�s cries. This would be a constant habit for years to come.

The next morning Desi woke up early and came out to the kitchen to tell me something happened to her In the middle of the night.

She always kept a small container of Holy dirt she got from Santa Fe, New Mexico when she went on a class trip with her Gifted and Talented class during the summer. Desi has always been very spiritual but this trip gave her such peace because she was able to visit Chimayo, a famous old church said to hold dirt that can heal the sick. She told us of the many people who have been cured of their diseases. There was a room full of crutches, shoes, notes, leg braces from these people. She said this was a very emotional sight to see and brought home some of this dirt. This was her favorite part of her trip.

That morning she told me of the pain that woke her from her sleep in the middle of the night. She said she was scared and didn�t want to wake me knowing it would do the same to me. The pain was on her right tibia and it was the same kind of pain she had before she was diagnosed. She reached over on her desk and got the container of Holy dirt, mixed it with her saliva and rubbed it where the pain was. As she lay there trying to fall asleep, the pain gradually diminished. She woke up with no pain at all. I took a deep breath, smiled and thanked God. We hugged each other and I told Desi it was our miracle.

Desi had all her tests done the following Monday. We waited for Dr. Greffe to call with the results. Tuesday I received a call from him around mid-afternoon. He told me the tests looked good, everything was stabilized and reminded me that was what I should have expected; bone does not show up healed for years on a scan. Except one tumor on her leg. Dr. Greffe paused and said it didn�t show up on her scan this time. It was gone. I asked where and which leg. His response �her right tibia.� Whatever information Dr. Greffe gave me after this was not heard by me. I was in shock and ran to the living room with the phone still attached to my ear. I looked at Desi in disbelief This frightened her because she knew I was talking to Dr. Greffe. She kept asking what was wrong?? Dr. Greffe told me he�d see us later in the week when Desi would be admitted. I thanked him, quickly hung up the phone and walked around the other side of the chair I was leaning on and sat down. By this time Desi was afraid to hear what news I had and just sat quietly until I was ready to tell her. Desi listened, and when I told her which tumor was gone, the look on her face was that of shock. The only words she could utter were �Oh my God.� We laughed and cried and talked for quite awhile about what this meant. We agreed that some people may not believe us but as long as we knew the truth, we couldn�t worry what others thought. We both admitted that had we heard it from someone we would have been very skeptical no matter how much we believe that miracles can happen or not, and laughed about this.

For days we walked around shaking our heads still in shock about the disappearance of the tumor she had placed the Holy Dirt on. I told Desi I had been giving lots of thought as to why only certain people are shown miracles. I thought maybe we are chosen because there is a certain person or persons around us that need to believe. Maybe someone who doesn�t believe in God would show them that he exists enabling him to be able to tell other non-believers. I also told her this may be a message that God means for us to spread around so that people who do believe can be reassured that God is near.

Several fund raisers were held for Desi. Diedra kept her mind busy by getting these events together and did so with such professionalism. She rounded up talent that would have been well suited for big social events. I was deeply touched by her caring. She would work all day at getting these fund raisers together and come to the hospital with food, or any necessities we needed. She would spend the night and take care of anything anyone needed. Dee took care of all of us. I don�t know what we would have done without her.

Desi was forever in the papers, or on television. She gained celebrity status and would more than surpass her �15 minutes of fame.� I had always wondered how Desi would feel if she didn�t get the television or news coverage Giga did when she was a senior in high school. How would Desi take not having the limelight her sister did. Especially if her senior year didn�t bring her scholarships, awards and commendations. Little did I know that Desi would receive the same amount of attention in the limelight, but this was not quite what I had in mind.

In addition to being on numerous TV shows and newspapers, Desi was able to do and see things she was not stricken with cancer. First row seats in a Bon Jovi concert for her and her sister, calls made to our home by her favorite group, The Nelsons, from their car phone rolling down a Los Angeles highway. They sent her a CD and several gifts as well, meeting Reggie Rivers of the Broncos, and also some Rockies baseball players. All of these fun things were made possible by a volunteer we met at Children�s, a dear friend named Jill Bonner. Jill devoted most of her time going from room to room on the Oncology floor singing to the children. She had a beautiful voice. She became a part of our family immediately.

Desi was able to spend a week in Aspen as a guest of the former tennis star, Andrea Jaeger. Andrea runs a camp for kids with life-threatening diseases and devotes her life to making sure these kids have fun. To this day, Andrea writes and sends things to Desi.

My family was always there for us; aunts, uncles, and cousins. They will never know how much that helped us. Desi always said that is one of the reasons she was glad she got cancer, she found the love of family to be more important than anything else in the world and developed a new love for each and every one. I was happy they each got to know Desi on a deeper level. Everyone was able to spend time with her and see what a truly beautiful, kind and loving person she is inside. Something they might not have been able to know had they not spent this time with her.

Chantal was going through a particularly rough period during this time. Dee, with this added stress, would finally turn to Desi to ask for help. Desi loved talking to Chantal and they grew closer to one another during this time.

Chase was confused as to what was happening and was frightened each time he saw Desi. We did our best to let him know that Desi would be ok. Donny, albeit in the background most of the time, was always nearby to do whatever, whenever he could. Donny held down the fort and made Chase�s life as normal as possible while Dee would devote most of her life to us.

The emotional stress you undergo coupled with the loss of life as you once knew it can be dangerous to your mental health when dealing with cancer. I was lucky enough to have family and friends who kept my mind busy so that I wouldn�t fall into a hole of self destruction I can easily see why it happens to a lot of people. Cathy had only herself to keep her company in Chad�s room. With Chad not being able to talk to her about his fears, what he wanted; what hurt, why he wouldn�t eat, his anger, frustrations, etc., Cathy had only herself to figure out the answers. There was a night when I went to Chad�s room to see if she wanted to go outside. I found Chad sleeping peacefully. I walked over to the side of his bed and watched him sleep while waiting for Cathy to return. His room was filled with pictures. I wondered how this little boy could get from being so healthy and energetic to this in such a little amount of time. His pictures looked nothing like him now. There�s something about a child with cancer, their eyes lose the life they once had, the glow in their face is gone.

I waited for Cathy a long time. A nurse came in to ask if she had been in the room yet. When I told her I had been waiting she informed me that they had been looking for her for hours. I became worried that something might have happened to her on a trip to the grocery store. That was the only place I could think she�d go because she didn�t know anyone in Denver.

I walked outside to get Mike to help me find Cathy. We walked to the parking garage ready to take the route to the store to see if we could spot Cathy anywhere. Mike glanced over and saw Cathy�s car parked with someone in it. We walked over and found her sitting behind the steering wheel crying. She had been drinking heavily and just wanted everything to stop; the hurt, the cancer, the pain, worry, fears, needles, everything. Cathy felt she couldn�t face another day of this and drank thinking she could become numb to it all, if just for awhile. We sat with her explaining how Chad was fighting with everything he had and needed her strength to see him through. If Chad feels she is giving in to this cancer letting it get the best of her, he might do the same. We cried together and talked until she felt ok to go back into the room again.

The next day I met Cathy in the hall on our way outside and she was telling me Chad had eaten almost all his breakfast. She was ecstatic because he had been losing so much weight lately and was put on TPN (a nourishment fed through a tube inserted in the nose down to the stomach). I hugged her and told her it wasn�t happening as quickly as she�d like but all these little steps were getting her Chad back. We walked down the hall holding each other when Dr. Greffe came bopping towards us with a bounce in his step and walking fast. I told Cathy to look and we laughed. �Danise! ! !� he yelled down the hall and picked up his pace. �I was just coming to see you! I have news! GOOD news!� He asked where Mike was, I told him he was at work. He asked me to come down to the conference room, pulled my arm and led me down the hallway. I didn�t know what to think. I felt my heart racing as we almost RAN to the clinic. He was smiling the whole way, and I was having a hard time keeping up! We get into the conference room, he tells me to have a seat and leans forward resting his forearms on his legs. �Danise, Desi was misdiagnosed...� My stomach felt like it fell to the floor as he continued to tell me how he had just received word from the Mayo Clinic. Instead of having Osteogenic Sarcoma, Desi�s diagnosis was Non-Hodgkins B-cell Lymphoma of the bones - a very rare form of cancer. I sat there with my mouth halfway opened. I must have looked confused because Dr. Greffe put his hand on my leg and said �Danise, this is the light at the end of your tunnel. Desi has a CHANCE now with experimental treatment.� He explained how the cancer was hard to diagnose in that you have to use special dyes on the biopsy slides and the Pathologist at Children�s Hospital didn�t think of doing that. He told me how very sorry she was and wanted to know if I would like to talk to her, that she would be more than willing to meet with me. I was dumbfounded and still trying to soak up this information. I wanted to spring up out of that chair to run and tell Desi but knew I needed to know more details. Tears were running down my hands as I covered my mouth staring down at the floor. I thought of graduation, Prom, her first kiss, college, movies, getting her drivers license and all the things I had not allowed myself to think about the last couple of months because I couldn�t plan for tomorrow, let alone years from now. I sighed relief because this was the best feeling I�d ever felt; to be able to plan again, to be able to talk about tomorrow and the next week and the next. I felt as if had just taken a deep breath of fresh air after holding it for months. All I kept saying was �Oh my God� and �I can�t believe this.� Dr. Greffe was acting like a little boy who had just gotten his first bike with his fists tightened and the biggest smile I had ever seen. He got up from the sofa beside my chair and just held me saying �She has a chance now, she has a fighting chance!�

We sat back down and he asked me again if wanted to speak to the Pathologist. I said no, what�s done is done and all I want now is for the hospital to make it a policy that at least two Pathologists make diagnosis on biopsies. Dr. Greffe said he had already met with the Pathologist and Dr. Odom (head of Pediatric Oncology) regarding this matter and that is how all slides will be diagnosed from now on. They were to have a meeting with other doctors and Administration that afternoon.

Dr. Greffe told me that Desi�s cancer was extremely rare and that only a couple of cases had been reported and studied. He gave me the studies to look over when I had time. He told me our next plan of action was for him to stay up all night researching the library for treatment because in this study it stated a patient had gone through a stem cell transplant. Desi would need to start chemotherapy treatment in her spine as well because this type of cancer can quickly spread to the brain. She would undergo a spinal tap that afternoon to determine whether or not she had cancer cells in her spinal fluid. He said Desi would need to go to Omaha, Nebraska because that is where Dr. Jim Armitage is, the leading physician in bone marrow transplants for Leukemia and Lymphoma. He told me that Dr. Armitage is requested to teach all over the world and since Desi�s case was so rare, he wanted her to be in good hands with someone who comes with the highest recommendation within the field. Dr. Greffe said he had already conferred with Dr. Armitage and would be sending him her file. Dr. Armitage said that he would accept her for �experimental treatment to be included in a study.� Dr. Greffe said that Desi would be helping others by letting doctors learn more about treating her kind of disease. I smiled knowing Desi would LOVE this idea, she would be helping others in her own way. I flashed back to her days of crying when she�d see people suffering on TV wanting to help. In my mind I thought of the words; everything happens for a reason.

Dr. Greffe told me to get out of there and go tell Desi, call Mike, tell everyone while he starts gathering information to stay up and review all night. I told him to start drinking LOTS of coffee because I don�t want him falling asleep! He laughed and told me that was his plan too. I walked out of the clinic feeling like my feet were not hitting the floor. My body felt numb. I wondered if this was a dream. I rubbed my face and eyes while waiting for the elevator and walked over to the magnetic sign that listed all the offices on that floor just to make sure this was not a dream. The elevator doors opened and I joined two nurses and a young lady who looked worn and worried. She was holding a cup of coffee leaning up against the wall staring at the buttons. She looked like I did so many times before. The look of defeat, helplessness and despair. How I wanted to touch her hand and tell her not to give up, to be strong, and most of all - believe. But then not everyone has their prayers answered in the way they want no matter how much they believe. The joyous hopeful feeling left me for a moment.

I watched the woman get out of the elevator on the second floor, surgery and said a prayer for her.

Kay, Desi�s Psychologist, was in her room talking to her when I walked in. I looked at Desi and blurted out the words �I have news! You were misdiagnosed, Desi1 What you have is not Osteogenic Sarcoma, you have what they call Non-Hodgkins Lymphoma of the bone. Dr. Greffe says this is the light at the end of your tunnel!� Desi sat smiling and said, �really?� �REALLY? That�s all you can say? Desi, listen! You have a CHANCE now!� Kay got up out of her chair and said �This is amazing. This is wonderful! I'll let you two talk, I�ll see you later, Desi!� I took a deep breath and smiled at her saying I still can�t believe it. Kay was in shock and said she was going to see if she could catch up with Dr. Greffe to get all the information.

Desi�s smile never left her face. She wanted to know the details but somehow still didn�t react in the way I thought she would. I expected disbelief, crying, getting out of her bed and jumping around the room! When I sat down to talk with Desi, she explained to me she knew she would be ok this whole time so yes, this was great news but something she already knew.

My Desi, my rock

Desi�s Second Chance

A stem cell transplant was a frightening thought. We heard of these before but never knew the details,and Desi wanted desperately to know what she would be facing. Dr. Greffe met with us after his research and phone contact with Dr. Jim Armitage at the University of Nebraska Medical Center. Desi would need one more chemotherapy treatment to make sure she was in remission (no noticeable changes in her tumors) before the process could begin. After her treatment she would go to Omaha for one week and have a �stem cell harvest.� She would come back to Denver for another round of chemotherapy and then go back to Omaha to have the actual transplant.

Tom Clancy did his own checking on Dr. Armitage. Tom said, �Steven Rosenburg tells me Dr.Armitage is the best doctor in the field for transplants and he is invited to speak around the country. Dr. Rosenburg says the National Cancer Institute (NCI) has been trying to lure Dr. Armitage to practice there but Dr. Armitage likes it in Omaha and doesn�t want to change. You are in good hands, Danise.� I felt relieved to know Dr. Armitage came so highly recommended.

Since Desi showed no signs of cancer in her spinal fluid, the doctors felt safe in assuming there was no cancer cells in her bone marrow either. They decided an autologous transplant (using your own stem cells; a stem cell is a basic cell which produces all types of blood cells) was safe. Her chances of suffering Graft Verses Host Disease (GVHD) would be less likely with this type of treatment, and her body would accept her own cells more readily than someone else�s; Her body would not consider this foreign and reject it.

Dr. Greffe wrote a letter to our insurance company recommending this treatment for Deseree. He told us to cross our fingers because most insurance companies do not cover stem cell transplants that are considered �experimental or investigational.� Dr. Greffe needed to give his opinion on how he thinks Desi could benefit from this procedure along with his research. If our insurance company did not approve, we would need to raise the funds ourselves costing $150,000.00. I wouldn�t let myself worry about this. If need be, we would sell our home. I also knew that my family would help in any way they could with more fund raisers.

All the nurses were fighting about who would get Desi on their shift because they wanted to get the inside scoop on how this new diagnosis came about. They were all in shock and amazed this could happen. Barb, the Physicians Assistant, said she was at the Tumor Board meeting on Desi, and how the doctors were dumbfounded about how unusual this case was. She told me one doctor said he had read in a journal of a fairly similar slide presenting itself as Osteogenic Sarcoma, but when they viewed the slides again, they found lymphoma. Barb said the doctors ultimately agreed that since TWO biopsies were done, the chances of this being the same with Desi were highly improbable. She told me when she found out they DID make a mistake and she DID have lymphoma, she �freaked knowing this could happen.� Barb�s news angered me having been so close to finding the biopsy mistake early on. If I would have never asked to have the biopsies sent elsewhere she would not have had a this chance to live. I told myself to let it go and just move forward.

Each time we met up with a nurse or doctor in the halls who just found out, we�d laugh saying patients and families were going to think we were out of our minds being so happy and shouting, �It�s lymphoma!!!�

Nurses from the clinic, hematology, and staff from all over would come to Desi�s room when they heard the news. It started making me wonder how many people have died being diagnosed with Osteogenic Sarcoma and in reality, it was lymphoma. Since lymphoma can quickly spread to the brain, how many people didn�t have the spinal taps injecting chemotherapy to the fluid? How many people are misdiagnosed each day. How many people die because of a doctors mistake.

A room across the hall from Desi�s room was being set up for her spinal tap. She was concerned that this was a painful procedure and asked if they would give her something prior to the needle aspiration. Dr. Greffe told us about another substance the FDA bad not approved of but said he would get it if she wanted it. This was a cream rubbed on the surface of the skin that in time would numb the nerves. Desi told him she�d like to give it a shot. They brought it right up. We waited for ten minutes until they were fairly certain the cream was given enough time to start working.

I stood at the edge of the table holding Desi�s hand while Dr. Greffe got ready. He told her to tell him when she started feeling pain and he would quit for a minute. She was on her side with her body curved in allowing the needle would be able to penetrate between the vertebrae to extract the fluid. Desi squeezed my hand as hard as she could when she started feeling the pressure. Dr. Greffe said she was doing fine and wanted to know if she would like to see what her spinal fluid looked like. �No thank you!� she blurted out. Desi wanted no part of seeing whatever he took out of her with that needle. He held the bottle up for me to see. I was expecting something resembling blood, but when I looked at this bottle it contained a crystal clear liquid. I was astonished that it was so beautiful, clean and sparkled in the light just like pure spring water. What a wonderful miracle our body is, so many different things make up who we are and what makes us work. Everything in harmony with one another. Each with their own importance, but depending on one another to keep the flow of life going. Dr. Greffe then injected the chemotherapy into her spine.

Desi got through the procedure ok but suffered severe headaches for a couple of days afterwards. The headaches were to be expected. The doctors explained that when the needle is extracted back through each layer of skin it doesn�t completely seal and therefore, spinal fluid leaks out causing headaches. Much to our surprise, we were told to have Desi drink strong black coffee, because caffeine helps to lessen the pain.

After the insurance board met, we received word that Desi was approved. I took the letter to Dr. Greffe (he was extremely happy saying, �I must have really written a great report!�) We were on our way to our new adventure.

Everything started happening so quickly thereafter. We flew to Omaha for a �peripheral stem cell harvest.� This procedure would entail collecting Desi�s stem cells by a machine by spinning her blood at a high rate of motion which separates the stem cells from the peripheral blood (the bloodstream). In order to collect these cells a special catheter was placed in the large vein on Desi�s side. She had to go through another surgery. Once the Catheter was in place, the collection took several days on a pheresis machine similar to a dialysis machine.

Desi met a wonderful nurse before going into surgery. They spent lots of time talking. She fell in love with Des and asked if she could have her sister, who was also a nurse, come visit her upstairs during the transplant. She thought Desi was the most beautiful girl. Desi captured her heart and she went home to tell her family about her. A few days later she and her family went to Denver to see the Pope, and brought Desi back religious items from their trip. This quick bond along with the caring this nurse brought Desi, touched me deeply.

We were taken into the �Cancer Clinic� at the University to meet with Desi�s doctor. When the nurse told me she would be seen by Dr. Gordon I told her there must have been a mistake, Dr. Jim Armitage would be her physician. She informed me that Dr. Armitage would be consulting but not performing the actual stem cell transplant. She said he was the adult physician, not pediatric. I told her I didn�t care if he was a veterinarian, I was told he would be her physician. Since he was the one who conferred with Dr. Greffe in Denver and knew her case I wanted him. She told me that would not be possible so asked to speak to Dr. Armitage. and she told me she�d see what she could do. I waited several hours for someone to take us to his office, but no one came. Mike wanted me to leave well enough alone. But this was too important to me. The whole process scared me and I wanted to be sure that a physician with an excellent reputation performed it. I pointed and asked the nurse if that was the adult clinic. She nodded yes so I took Desi�s hand and motioned for Mike to follow. We were greeted at the door by a nurse wanting to know if we had a scheduled appointment. �Yes, at least I thought we did,� I answered. I explained why we were there and asked her to please inform Dr. Armitage. She told us to have a seat in the conference room, it could take awhile because Dr. Armitage had many patients to see. I told her I was from Denver and had all day and night if need be.

We waited over an hour before the nurse would come back in and tell us she was sorry, Dr. Armitage would not be able to meet with us today as his schedule was such that he was running behind. �I�m not getting up off of this chair until I speak to him, I�m sorry.� She walked out of the room without saying a word. Ten minutes later a tall man stands at the door holding a chart. �You wanted to speak to me, Mrs. Martinez?� �Dr. Armitage, nice to meet you. Yes, I do,� I said. I proceeded to tell him how concerned I was. We were told you would be handling Desi�s case only to find out another doctor whom I know nothing about will treat Deseree. He assured me he would be kept informed each day as to Desi�s condition and offer suggestions as to the type of treatment she would need. After much discussion, I felt comfortable in leaving his office. I made sure he would promise he would be a part of Desi�s team of doctors.

By the time we met with Dr. Gordon the next day, he had already heard about my visit with Dr. Armitage. I felt that he was angered I didn�t have any trust in him. Dr. Gordon was a cocky man who didn�t like to be challenged or questioned, but was very good in the way he related to kids. He used his sense of humor with the kids and I liked this. It was adults he had a problem with. He told me how many years he had been a doctor, bow many transplants he had done. He wanted to know why I thought he was not the right person to handle Desi�s case. Didn�t I trust him? I simply informed him that I would continue to make sure my daughter had the best of care and that I hoped that our first impression of one another would not affect Desi�s care. I told him I was not the kind of parent that still thinks doctors are God and I would also be questioning things I was concerned about. I told him I and wanted him to know this upfront. Needless to say, we started out on the wrong foot with one another. Desi thought it was funny. I wish I could have said the same.

Little did any of us know this little incident would be the first of many when it came to the doctors in Omaha.

Desi spent four days in collection. We would wake up early each morning, walk across the Street to the hospital and up to the collection room at 6:00 a.m. She wore a fanny-pack that carried a device that would automatically administer GCSF to make more stem cells into her system through the catheter. They needed to collect millions of stem cells to better her chances of more healthy cells being able to hone in and make their home in her bone marrow when her immune system was suppressed by chemotherapy and radiation. Stem cells are white and look like platelets, they are frozen with a preservative called dimethysulfoxide (DMSO) which smells just like creamed corned and to this day Desi will not touch the stuff. This whole procedure is called �harvesting.� The cells are then frozen and stored. After the chemotherapy and radiation, they would be placed back into her system once her bone marrow was killed and would, like little radar detectors, find exactly where they were supposed to go to start making new healthy cells. Since GCSF induces more white cells, Desi was going through heavy night sweats each night and would wake up several times in drenched sheets and blankets. The doctors weren�t ready to say GCSF is what caused it. But it was the only thing I could think of After she was taken off the high doses of GSCF, the night sweats stopped.

A doctor came into collection one day and told Desi he was going to have her take two aspirins because her blood started to clot. I told him we were told in Denver she was not to take aspirin when receiving GSCF because it could harm her. He insisted this was safe and I urged him to call Dr. Greffe in Denver before I would allow him to give them to Desi. I waited for him to call Dr. Greffe. He chose not to, so I called myself. Dr. Greffe told me to tell this physician Desi is not to have aspirin as long as they have her on high doses of GCSF and if they had any questions to please call him. After giving the physician Dr. Greffe�s message nothing else was said about the dilemma and it was never recommended again.

I started to feel I needed to be at Desi�s side each and every second of the day causing a great deal of stress for me. I was frightened so many things could go wrong if you don�t play an active roll in the treatment of your child. This would be an important lesson for me and my family to learn.

When we returned to Denver Desi was admitted for chemo again. Dr. (Greffe met us as we were checking into her room and asked how things went. He said he heard we had a little �problem� with Dr. Gordon and laughed. He told me I did the right thing and to never think about not saying anything to make waves. He said I had every right to ask whatever I needed to know. Dr. Gordon was aware of who he was dealing with. He smiled and hugged me.

Shortly after this chemotherapy round, Mom would notice Desi�s ankles swollen. Within a day her legs doubled their size. The doctors thought it was due to the steroids but took her in for surgery to make sure. Doctors found large clots in her intervenacava. It was thought to have occurred from the catheter she had placed in Omaha. We were told the first couple of days were critical in that the blood clot could either, 1) break loose and cause a stroke or 2) attach itself to the wall of the vein and the blood would start flowing around it escaping any danger of stroke. We met with the hematologist and they told us it was a wait-and-see period in which Desi was to rest in bed and be given large doses of heparin to thin her blood.

The critical period passed but Desi�s legs were still three times the size they should be. She had a difficult time walking. We were given a wheelchair for home and a handicap parking sign to place on our car. It was hard to find shoes that would fit Desi�s feet because they were swollen beyond belief When weeks passed and nothing had changed, I asked more questions of the hematologist but they couldn�t answer. Its not known what blood clots will do at this time. This might be something Desi would have to deal with for quite some time.

Tom Clancy called to tell me Dr. Civins and Woller had serious reservations as to whether or not this was the right choice regarding a transplant and wanted me to call them. Each one stated they saw no reason as to why the doctors felt Desi needed a transplant, they thought by continuing her high-dose chemotherapy might get her into remission. If it failed, then reconsider a transplant. I spoke with both doctors regarding their opinions and gathered up more information to think about before making a decision. For the next several days I talked to Desi about this. She remained adamant in that she wanted to have the transplant done. I told her the doctors I talked to felt this might be too drastic a step for now because of the risks involved. She would have to undergo some very strong chemo, three times the normal strength because of the amount of tumors and her type of cancer. There are also long term effects which include more risk of a secondary cancer due to the amount of chemo she needed as well as total body irradiation (TBI). She would not change her mind and I respected her wishes. I trusted her faith that everything would be ok.

I started having thoughts that maybe the doctors who wanted her to have this transplant were doing so because she was a rare case and they wanted research on it. I approached Dr. Greffe with my thoughts. His response was �That is true, she will be research, a guinea pig if you will. But you have to know that if you were to go through her high-dose chemotherapy here and she relapses at some point because the cancer is stronger than the chemo, the chances of the transplant helping her are less. The studies indicate patients have a better chance if they have gone into their transplant in remission, not relapse. The radiation and chemo have a better chance of killing the rest of the cancer cells not seen under a microscope as opposed to having her body full of tumor activity.� This made sense to me and I felt better about the decision Desi made.

I spent the next few weeks reading medical studies on transplants and knew we were headed for some very rough times.

In Denver, Desi would receive her last chemo treatment along with another surgery to place a double-lumin in her chest (one tube in her chest branching out to two outside the chest) The doctors in Omaha needed more tubes because she would be booked up� to various IV�s during her transplant. She would also receive her last spinal tap but this time it would be during surgery so she was very happy about that.

We went back to Omaha on August 2, 1993. Desi tried talking the doctors into letting her stay with us at the University dorms located just outside the emergency room doors. She wanted to spend Giga and Mom�s birthday with them on August 6th, but the doctors said this wouldn�t be possible. She would have to start her treatment as soon as possible.

I had a lot of anxiety about this transplant. It was hard to keep the spring in my step so as not to frighten Desi and the rest of the family. I knew we made a wise decision. I felt extremely positive about Desi�s health for the first time. But the procedure was starting to sound dangerous. I didn�t know how to prepare for it. The doctors kept repeating that there are no guarantees, it was experimental. Some die from the actual procedure itself, but they wanted to be up front and honest about what we were in for before signing the consent forms. We met with a team of doctors who would be a part of our daily lives for the duration of her stay. We were taken on a tour of the transplant wing. But before entering the rooms, we were instructed to put on boots, gowns, gloves and masks. Walking through the hallways I detected a familiar smell but couldn�t quite make it out. �If you�re smelling creamed corn, it means someone just had their transplant today and that is the DMSO.� Desi almost gagged. We were shown the CBC chart outside each door to the rooms. We were also taught bow to read her progress each morning when the charts were posted. Desi would be in �protective isolation� which means she would need to remain in her room for weeks without being able to leave. Anything brought into the room would have to be sterilized. We would also need to wash our hands with a special antibacterial soap at the sink outside the door of her room, then put on gloves and a gown before entering ourselves to see Desi. Each room was designed with a special laminar air-flow ventilation system to filter out environments.

Desi was admitted that evening. We were met with a number of specialists; physicians, PA (physician assistant), nurses, clinical nurse specialists, a dentist, social worker, dietitian, teacher, and a therapist. Each one had their own explanation of how they would be involved in Desi�s case. We were instructed as to what her �preparatory regimen� would entail; three consecutive days of high dose chemotherapy, a one day wait and three consecutive days of TBI (total body irradiation). She would then be given her stem cell transplant.

We were led down to the room where Desi would have an hour of radiation each day. The doctor met with us to plan and take measurements. We were shown a clear piece of plexiglass that would be placed on the side of Desi�s head to prevent total rad exposure to the cranium. She would still have radiation to her head but not the exposure the rest of her body would receive.

The support Mike and I received consisted of a team of specialists who met with us whenever we felt we needed to talk about our feelings and fears. This decreased our anxieties and fears of the unknown, our sense of control, and help satisfy our need for information, or so they said.

Since the doctors decided on Thiotepa as the chemotherapy agent best suited for Desi�s cancer, she would need two bed baths a day. Doctors stated when other patients received this agent in the past they received burns to their skin because Thiotepa is excreted through the skin causing blistering and breakdown of tissue. Based in their description of what to expect, Desi could look gruesome and be in quite a bit of pain. I told the doctors I would handle the baths myself and would increase that number to three times daily.

Mom, Dad, and Dee drove to Omaha to stay in the dorms while Desi was there. Fortunately, everyone was able to get a room. I kept my things in my room but my home was mostly in Desi�s room just like Children�s Hospital in Denver. Dee wasn�t sure she would be able to back go to Omaha with us due to financial reasons. This was tearing her apart inside because she needed to be with Desi. I talked her into coming because there was no way I could stand the thought of her not being there with us. I gave her some money to leave with Donny and the kids, and the rest was for her stay in Omaha. This money was part of the fund-raisers she had gotten together and I couldn�t think of a more appropriate way of spending it. She didn�t want to accept it but I made her understand this would be the only way and we both knew Desi would be miserable without her Auntie Diedra there.

Desi�s first dose of chemo was a little delayed because the pharmacist thought the doctors made a mistake in the dosage. Jill told us since Desi had so much disease throughout her body, they needed to give her three times the amount usually given for a patient on high-dose Thiotepa. The pharmacist looked at Desi�s weight and it didn�t jive with the numbers the doctors prescribed for her chemo. He wasn�t sure and felt he needed to check the dosage with the doctors prior to sending it up. Jill and the doctors had to tell him the dose was correct, Desi needed a stronger dose. Jill went on to say this is the reason this transplant was a high risk. I had that gut-wrenching feeling deep in the pit of my stomach again. I wondered if we were doing the right thing. Yet I knew Desi�s chances weren�t as good if we chose the other route. More importantly, Desi believed this was going to work and I needed to trust her faith and strong intuition.

Desi did quite well with the first couple of days of Thiotepa. Although her body was visibly wearing down. Her enthusiasm never wavered. We filled her room with lots of brightly colored decorations with a poster of her beloved yin-yang. Each of us also painted something on her window with neon paints I bought from the store. Mike painted fantastic cartoon characters, and a beautiful drawing of Jesus kneeling down at a rock and praying. Giga drew a head with tons of hair next to another one with a couple of strands sticking up at the top. Under these heads were the words �This is your head. This is your head on chemo.� Desi loved looking at her window each day. The arts and crafts department sent up a long drawing of a giraffe indicating temperature levels in both celsius and degrees. We would then be able to translate what they said her temp was. We here already taught this in Denver, but it was good for Dee and Mom for quick reference. The nurses brought a big calendar and hung it up on her wall. In the corner of each day was a number indicating her countdown days. August sixth was day seven, August seventh was day six and so on until it reached August thirteenth, (Friday the thirteenth as a matter of fact) Her transplant day was listed as day zero. Each day after this would be written day plus one, so on and so forth. We each wrote our names down on the date we projected Desi would start showing blood counts. This would be a day to celebrate because that meant the harvested cells started to produce. Desi referred to her transplant day as her �birthday.� Each day Dee wrote words of encouragement on the calendar, a quote of something I said or some significant thing Desi did.

It was her last day of chemo. She was able to have a day of no treatment giving her body a rest before she was to continue on with radiation. This was changed later because the doctors felt in Desi�s case, it would be wise to not waste any time causing cancer cells to start reproducing. She was rescheduled to start radiation treatment the next morning.

Desi lost a lot of strength from chemo and needed a wheelchair at this point. She was starting to get mucositus and very nauseated. Her blood pressure was lowering and was unable to get out of bed without feeling like she would faint. When she needed to use the restroom we had to roll the potty to the side of her bed and have someone help keep her balance.

Dad kept his mind busy by sitting on the porch at the dorm befriending other patients who lived there with their families. He took his position like he did in Denver as the �keeper of laughter� with all the families and patients. Everyone made the porch their home base and enjoy Dad�s company, joking, laughter and support. Among the group were, �Bucky� and his wife Gerline. Bucky was a big man around sixty who was waiting for a liver. He wore a pager attached to his belt at all times for immediate notification if a liver one would soon be arriving. He always put his fingers together in front of his eyes as if measuring something each time Dad walked out on porch. and Dad would tell Bucky, �You ain�t gettin� my LIVER, Buck, I�m tellin� you!� Bucky needed a large liver and dad was just his size. Gerline was a gentle woman who was just as much fun to be with as Bucky. It took a few weeks to totally understand what they were saying because of their heavy southern drawl coming from �Nothe Carohliiiiiinah."

Jerry and his wife Tina were about my age, and from �Awk�nsaw.� We needed a couple of weeks to figure out what they were saying as well. They were both a lot of fun and ornery as heck. Jerry and Dad both wore baseball caps at all times. Jerry joked with Dad saying he put Dad in his will to receive his hat collection. Jerry was at the hospital for experimental treatment for lymphoma as well. He had a bone marrow transplant months before but it failed and his cancer returned. He was going to the clinic to receive experimental radioactive chemo shots hoping they would target his tumors. Tina met Jerry after he found out he had cancer. They decided they wanted to spend the rest of their lives together no matter what their future might hold. Dick was also living in the dorm while his wife was a patient in the hospital, and spent a lot of time outside with the group. I�m sure it was a great benefit for him to have people to talk to being there alone when he wasn�t with his wife. She had a liver transplant and he was having a rough go because she wasn�t progressing like doctors had hoped.

Sophie�s husband just had a liver transplant, She was another source of strength to us because we knew she was praying hard for Desi. We were there the night they were flown in by jet from Questa, NM. They were still there when we left so we never had the chance to meet her husband. Sophie became a good friend to Mom and Dad. They were a constant source of support to one another because they has a lot in common. They were raised in small towns next to each other and having family still living there, They were around the same age as well as of hispanic decent. These commonalities between them made the bond that much stronger. I met her son, daughter-in-law and grandson when they came out to stay with her for a couple of weeks. It was hard for her when they went back home, but with the closeness of the group she knew she would never be alone.

Todd. How to describe Todd. ...he was our son, grandson, brother and friend. He was a year younger than Giga, and in the hospital for almost a year before we met him. He had no family staying with him. His father visited him only twice for about an hour while we were there. We celebrated his birthday on the porch with our group he called �The Porchridge Family.� I bought him a Barney birthday cake because be loved Barney (we told him to seek therapy) and everyone bought him a gift. We set everything up out of sight on the porch and waited for him to come down to surprise him. Todd was speechless He was one big smile from ear to ear that day. He ended his party asking if someone could take a picture of him with dad, whom he called �Grandpa.� Everyone cracked up laughing when this tall baby with a Barney necklace hopped up and sat on Dad�s lap.

Todd had a partial liver transplant and was not making any progress. He walked across the Emergency Room parking to the porch dragging his IV pole behind with a cigarette hanging from his fingers at least 20 times a day. Todd lived outside once we got there and he got to know Dad. He arrived early in the morning and brought Dad orange juice or coffee. Dad asked him what the doctors had to say about him today. Todd always said he didn�t know, he hadn�t seen them yet. �Todd, you were probably RELEASED last week but they haven�t found you to tell you yet!� Dad would joke. Mom took Todd under her wing right away. How could you not? He was a beautiful, funny, warm-hearted soul. Everyone fell in love with Todd. Our hearts ached knowing he was there without family, especially since they only lived in the next town. Todd was supposed to come to Denver to stay with Mom and Dad when he got out of the hospital. He was so excited about it. He would then spend Thanksgiving with his �family.�

The Porchridge Family is the most special memory for all of us. We will never forget our friends with whom we laughed, cried, shared, prayed, and celebrated with.

Desi started radiation treatments the morning of August ninth. It was a horrible feeling watching her through the glass knowing that radiation was hitting every part of her body. There were times I wanted to go in, grab her and just run as far away as we could possibly get. I agonized over the thought of her body having to go through all of this I wanted desperately for it to be me instead.

Each radiation session brought on more nausea. Desi was not looking at all well. Her eyes were sunken in deep, skin was showing signs of blistering, mouth was getting worse. She was losing more and more strength each day. The radiation treatments caused her skin to become dark. We teased her by saying, �You're over there in a TANNING bed, and here we thought you were in radiation!�

Getting up out of the bed to sit on the potty was getting to be too much for Desi now. She was ordered a bedpan and wouldn�t feel the ground at her feet for a long time. She was scheduled to receive her transplant anytime. We all waited with nervous anticipation. A woman brought Desi a T-shirt with musical notes. At the bottom of the shirt read: CELLebrate MARROWIy. It was truly a special day of celebration because Desi was getting her new life today.

The room was filled with people; our clinical assistant, Marsha the physicians assistant (who formed a close bond with Desi and often sat with her talking about things not having to do with the hospital), Dr. Winters our intern (a young man who gave his all and then some the whole time Desi was in the hospital), Dr. Woolridge, Dr. Gordon, Lucille our primary nurse and the family. A machine was rolled in and set up across the room. Dr. Gordon told Jill to take out the first �bag of life.� We were suddenly overcome with emotion. She reached in the water with gloves where the stem cells were thawing. Handling it ever so carefully not to damage any of the cells, she held them with both hands and slowly walked over to Dr. Gordon who hung it on Desi�s IV pole. The nurse then hooked up her central lines to receive it. The first drip that came down brought tears to our eyes. It was a feeling we couldn�t describe. That first drop meant everything in the world to us. I felt like I couldn�t breathe. The doctors stood there quiet while the air filled with the smell of creamed corn from the DMSO. This smell broke the silence as we laughed when everyone covered their nose. Desi didn�t seem right to me. I watched her face waiting for any signs of joy or fear. But her face was blank. Suddenly she started shivering growing worse over the next couple of minutes. They wrapped her in blankets trying to take away the chills. The her temperature started rising. Doctors said her body reacting to something happening and its reaction. They immediately ordered blood tests. Within the first hour tests were done detecting some type of infection. A strong antibiotic was ordered from the lab and we waited for them to bring it up. The room was hot and Desi�s fever was worsening. In a short time, her temp rose to 106 degrees. She was given Tylenol which brought it down some but only masked the fever. I asked the nurses where the antibiotic was, and I was told the lab would be here as soon as possible. I waited another twenty minutes before running to the other side of the hospital on the second floor where the pharmacy was. I asked them to give me the antibiotic and I would take it to Desi�s nurses. They told me I was in the out-patient pharmacy so the Pharmacist offered to call the lab as to the status of Desi�s medicine. I was told the pharmacist I needed was on the other wing with Geriatrics and would bring Desi�s medication once he was through. I ran back upstairs to the nurses station and demanded they give me the pager number to the pharmacist. I was frantic. When he called back I told him I wanted my daughters antibiotic �NOW!� He started talking about making rounds. I yelled over the phone �You get your ass here right now before I come over to that wing and get it myself! My daughter has a temperature of 106 and I am NOT going to wait another minute for you, do you hear me?!� The pharmacist brought the antibiotic within five minutes and apologized profusely. I told him I didn�t want apologies. Just give the bag to the nurse! I walked back to Desi�s room. I was scared and not about to fool around with doctors and their holier-than-thou attitudes.

While waiting to see any sign of improvement on Desi, I stepped out to grab something to eat and walked back to Desi�s room. she held up her band showing me Mom�s engagement ring. I asked why she had it. She told me grandma gave it to her saying �The day I received this ring, it was the beginning of my life. Now it�s yours, my Desilu, because you have started a new life today.�

Unfortunately, the antibiotics did not work and Desi became very ill. Blood tests could not determine what type of infection she had and therefore, not able to treat it with anything specifically targeted for that type. Doctors were doing their best to try different drugs. Each time a nurse came in to check her vitals they would bring another machine to hook up on her. The room was becoming so overly crowded that they had to start taking non-essential things out to make more room. Dr. Winters, Dr. Wollner, and Dr. Gordon met with me to tell me they wanted to try an experimental antibiotic called E-5. It was very powerful and they hoped this would fight the infection. E-5, if it worked, would only take one dose. I would need to sign a paper giving my permission prior to administering it. I wanted anything and everything they could think of to help Desi and told them to bring me the paper.

Desi was given the antibiotic soon after that meeting. I was told we needed to give it overnight to see if it was going to work. The next day brought nothing. Desi was still very sick and her fever would not drop. The room grew increasingly hot and I feared the ventilation was not working properly so I asked the doctors and nurses to have someone come check it. I gave Desi bed baths all day long because the heat was irritating her blisters on her body. The worst areas were where it was warmest. Each time I would sponge water on her, the skin rolled off. We always knew what areas were going to get worse because the skin would turn white. Large areas of skin were blistering making Desi more miserable. The vents were checked and given a clean bill of health. I talked to other families on that wing and asked if their rooms were hot as well. Each one said no, it was cool and comfortable. I got on the hall phone (the phone the nurses and doctors use) and rang Hospital Operations again asking them to compare it to the rest of the rooms. But they insisted ours was fine. We couldn�t sit in that room five minutes without being soaked in sweat. It didn�t help matters that we were suited with gloves, a gown, a mask and booties. I knew Desi felt the heat two-fold with her fever but was too sick to say anything. We each took turns fanning her with magazines and sponging her down with towels soaked in lukewarm water to try and cool her. We stood right underneath the vent and felt nothing coming out. I asked the doctors if I could go buy a fan to put in Desi�s room and was told absolutely not. They explained that the system that was installed in each of the transplant rooms worked in a certain way taking out any airborne germs that could harm Desi. A fan would defeat its purpose. �Well then, you had better find someone to fix the damn thing. NOTHING is coming out of this vent, there IS no air flowing through this room� �We�ll see what we can do� was their reassuring response.

I took the elevator down to the main floor to ask someone in the office where the Administrator of the hospital was. She directed me to the other side of the dorms, where all of the administration offices were. I marched down the hallways with reddened cheeks and lips pursed tightly when I noticed Dee heading towards me from down the hallway. She asked where I was going. I kept my eyes focused forward while continuing my pace. �Deseree is fighting all her big battles and I am fighting all the little ones for her. Together, we�ll get through this,� I said in passing. Dee followed me into the office of Chief Administrator. The secretary at the desk told me he was on vacation, but the assistant was here. She is out of her office for a bit. �Thanks, can you tell me which office that is?� I asked. She pointed to a lavishly decorated room with thick blue carpet and handsome furniture. I started walking in with Dee following closely behind. The secretary told me I couldn�t go in there and asked If I could give her my name and where I could be reached so that the assistant could get in touch with me when she came back. I ignored her and sat down on the chair in front of the assistants desk and said I didn�t mind waiting, really. She must have immediately called her boss because we didn�t have to wait but a few minutes. I noticed the office was comfortably cool.

After explaining why I was there and my concerns about Desi�s burns and fever with the heat in the room, the assistant got on the phone. She ordered them to check the ducts in the ceiling. If they couldn�t find anything there, locate the problem, fix it and get back to her. She apologized for having to go through all of this and couldn�t imagine what Deseree had been going through with this hundred plus degree weather they bad been having. She told me things would be fixed and thanked me for bringing this to her attention.

Not more than a half hour later I heard noise in the ducts above the ceiling. The nurse came in with a fan and told us it would be ok to run. Ironically enough, the next day the air was flowing nicely and the room was cool.

Desi�s mouth was getting worse. Her infection had not been helped with E-5. More blood tests, more machines and more visits from the team of doctors filled our day. The family was exhausted worrying about Desi. They went back to the dorm for a short nap since they had not been getting much sleep, I sat talking to Desi while she wrote her responses on a notepad. She was unable to speak because her mouth, throat, and esophagus lining shedding left everything raw. Just opening her mouth and letting air hit it caused excruciating pain. The daily sessions with the hospital dentist were getting more and more difficult to watch. As he scrubbed her gums, tongue and teeth with a sponge, Desi had to turn her head away when the pain became too much. He would get agitated because he was on a tight schedule and needed to get this done fast so be could make all his rounds. The nurses gave Desi an bolus of morphine about five minutes before the dentist came in. But that didn�t seem to help the pain. �Excuse me,� I said, �she�s in pain. I have been sitting here for days watching you rush her through this process and getting angry when she has to stop. I'm tired of the comments and the tone you use with her. Either you let me do it or cut the comments to Desi and be patient, ok?� Not a word came from his mouth. He finished up. took his supplies and left saying he�d see Desi tomorrow. I asked the doctors to please let the other dentist treat Desi from now on and they agreed that there was no excuse for rushing Desi like he did, Desi�s condition was not that of a typical patient and her mouth was more than just sore, it was shedding layer after layer and needed more time to treat than other patients. I was pleased when I got the approval for the other dentist to treat her from now on.

I walked back to Desi�s room to find her sleeping. I read the machines and noticed her vitals bad changed enough that I thought it needed to be brought to the attention of the nurses so I called for them. The nurse walked in, looked at the readings and called for help on Desi�s bed phone. She went to the foot of the bed and pushed something that caused the foot of the bed to rise and lower the head portion. The other nurse rushed in, exchanged medical terms I couldn�t understand and before I knew it the room was filled with doctors and nurses running around frantically. Doctors were ordering Epinephrine (a hormone to stimulate the heart) and Dopamine (an amnio acid which controls nerve activity), injecting them into her line, watching the monitor and ordering another dose. Doctors and nurses were everywhere and I had to stand back away from the bed and let go of Desi�s hand. It was all happening so fast and I didn�t know what was going on. I looked toward the door and there was more nurses standing there watching with the door open. This was serious, I thought, that door is not to be left open at any time because the air in the hallway could harm Desi. I asked what was going on, what was wrong?? Doctors were scrambling, ordering more machines, more drugs, and injecting her several times. A nurse walked up to me and said Desi was going Into septic shock and her blood pressure was only 22 over 12. It had fallen that fast. They had to tilt her bed to get blood to the vital organs. My eyes followed a large syringe about the size of a turkey baster being attached to one of her tubes. The first dose didn�t work in bringing her blood pressure up so they gave her another one. Everyone had their eyes on the screen waiting for the numbers to rise. I took a few steps forward in the way of doctors who had to make their way around me because I wouldn�t budge, leaned my head forward and kept telling Desi she was going to be ok �I�m here, baby. You�re going to be ok. Don�t be scared, Desi, I�m right here with you. I�m not going to leave you.� I wanted to push the doctors away and hold her band again, I wanted to crawl on her bed and hold her in my arms, I wanted to be near her but couldn�t. I clenched my fists, closed my eyes and prayed. I blocked the sounds in the room out and just listened to my mind concentrating on my prayers.

I edged my way around the crowded bed over to the other side where I could see her face better, she was looking around while a doctor was talking to her telling her she went into septic shock and asked if she was feeling ok. She nodded, smiled and said �fine.� They said her blood pressure was starting to come up and things looked like they were ok now. Desi looked relieved. The fear in her face turned to calm and I moved towards her reaching out. I was dazed. We thought we were prepared for the worst but found out we had no concept of what trauma we could experience. I knew I had to let my parents and sister know. I had just called Giga and Mike�s room at the dorm to tell them what bad just happened. I asked Desi if she would be ok for me to leave for a couple of minutes. I knew Desi wanted the family there with her.

I don�t even remember riding the elevator, walking the hallways, going through the emergency room outside to the dorm. I just found myself at the door of my parents. I�m not even sure why I didn�t call them on the phone from Desi�s room like I had Mike and Giga. My thought process was numb like the rest of my body. I knocked and waited about 20 seconds before someone would answer. They had all been napping. Mom opened the door and I calmly said �Desi went into shock, she�s ok now� and quickly walked back to Desi�s room at the hospital. My parents told me I looked as white as a ghost and knew I was m a state of shock because of the way I talked and acted. Mike was already there when I arrived. Mom and Dee reached Desi�s room about 30 seconds after I did. They had the look of terror in their eyes, wanting to know if Desi was ok, what happened, when, how, and why. I sat trying to explain what I knew in a monotone voice. I was still attempting to make sense of it all. Trying to go over everything in my mind to understand. I wasn�t able to deal with questions very well. My mind was filled with my own.

Doctors told us they would like to try another dose of E-5 on Desi. I would need to sign another release. Half listening to what they were saying, I took the paper and signed my name, handed it back and walked into Desi�s room. Desi was in an enormous amount of pain as the stomach lining was shedding all the way up to her mouth. Her nausea was getting worse and the drugs they were giving her for that were not helping. They kept a watchful eye on her blood pressure. It was very low by normal standards, but high compared to what we now knew it could drop to at any moment. Nurses were getting tangled in all of the tubes leading from Desi�s lumens in her body to the machines scattered around the room. Someone was with Desi at all times.

Down the hallway a little boy was fighting his own battles. He was a little boy of six who was placed on a respirator. When Desi was admitted, he was a feisty little thing. He was full of boyish attitude and strong will. The nurses always kept us informed as to the progress or setbacks of the other transplant patients. Being so isolated from everything and everyone, the patients found comfort in hearing so-and-so�s counts just came up, or so-and-so isn�t doing so well today but they are hanging in there. Since Desi had had her own trauma, we had not talked about any of the other patients that day. Mom found out from the Porchridge Family downstairs as to this little boys condition. No one knew the details because his mother had not yet returned to the dorm. But they did find out he had just been placed on a machine.

Later that evening I wanted to approach Dr. Winters with the request for Zofran, the drug that Desi was always given for nausea in Denver. I asked the doctors to have him stop by our room when he had time. Knowing he was dealing with the problems of the little boy down the hall, I didn�t want to pull him away for something that wasn�t as dire a situation as the little boys�.

Mike bought Desi a sign language book so she could use some of them to let us know what she was trying to say. It brought a big smile to her face when be handed it to her and we all started looking through it to learn.

Lucille, our primary nurse, was getting the best of me by this time. We had taken about all we could from this woman, nothing Desi did was right, nothing any of us did was right and she would show her disgust or say something to make us angry. She made Desi very uncomfortable from the first day she was admitted. I had taken over almost all treatment duties except for administering drugs and I think this angered Lucille because she took it as she was not doing her job to our satisfaction. That was never my intent. I wanted to do everything I could for Desi so the nurses would have more time to treat other patients who didn�t have family with them, and also because I needed to do something, I needed to feel I had some part in helping with Desi�s treatment and I wanted to see that everything was done with the utmost care. All of Desi�s other nurses understood and appreciated my need to do this. But Lucille fought it all the way and would find things to complain about. Desi had enough to deal with without dreading a certain person each time she would hear the door open. This was causing a lot of stress amongst everyone and it needed to stop. I called a meeting with our support team and Mike and I met with them that afternoon. After explaining our concerns, the team agreed this was not good for Deseree and would talk to Lucille as soon as possible.

Lucille came into the room that afternoon a changed woman... She apologized for having caused problems and asked that I let her know if there�s anything she can do to make Desi as comfortable as possible. She brought me supplies for dressing changes to Desi�s tubes, medication to be given orally, and any other procedure I was able to do myself.

I looked on the calendar and saw that Dee had written things I had said in the spaces of August 11 and 14, she wrote, �We have to control the things we CAN control� and �Deseree is fighting all her big battles and I am fighting all the little ones for her. Together, we�ll get through this.� We were waiting to fill in all of the other spaces with blood counts. Desi�s immune system still had not recovered. The doctors said it would be a great day of celebration when we looked on her chart one morning and saw her ANC column with a �.1� Then we would know all know her cells had started making their home in her marrow in addition to making newer ones. Each one of the family including Jill and Marsha, placed their names on the calendar, as a guess for when this day would take place.

Marsha enjoyed Desi and wanted to do anything and everything to make her comfortable. She would ask Desi if she needed anything from the store she could pick up on her way home from work. She also suggested the use of a notebook she had at home for Desi to be able to communicate. At this stage when Desi couldn�t talk. Marsha would sit with her and tell her all the places she has gone in the mountains in Colorado. She knew that Desi�s plan after the transplant was over was to sit by a stream and thank God for the flowers, trees, birds, family, and just life in general. Desi was anxious to be able to just sit there and think.

We all missed Desi�s voice and laughter, and now because she was so weak she was no longer able to write on her notepad all that she wanted to say. But the transplant was never able to steal her smile from us. Marsha bought her a book and wrote a little something on the cover. It was a humorous book about patients� stay in hospitals. Marsha felt this would nourish that smile of Desi�s.

Dr. Winters called me out of Desi�s room and said he heard I wanted to talk to him. I told him I would like for Desi to start taking Zofran for her nausea. The other drugs weren�t doing a thing. He started telling me how Zofran would not work and suggested Marinol - a synthetic marijuana. �Absolutely not� I quickly answered, �There is no way that Desi will agree to take that.� He explained that she would not become addicted to it and it has helped many patients� bouts with nausea. I stood firm on my decision for Zofran. When he told me, again, how it would not work I became extremely angry and said �It�s so strange to me that Zofran worked wonders on Desi in DENVER, and just by crossing a state line all of a sudden, it won�t work!?� He took a deep breath and asked if we could compromise; Desi would take Marinol and if it didn�t work the first time, he would give her Zofran. I agreed to talk to Desi about it.

It was just as I thought, Desi wanted no part of Marinol. She shook her head rigorously. I explained to her how the deal would work and that she wouldn�t be given Zofran until she showed Dr. Winters that Marinol would not work. I promised she would not be given a large dose. She succumbed to Dr. Winter�s request because she knew that would be the only way to get Zofran. I knew if Marinol did in fact work better than Zofran she would want to remain on it until she felt better.

Desi laid with the head portion of her bed raised staring at the TV screen without blinking. She had a blank look and very slow to show a response to anything going on or being said. I called the nurse into the room and told her to document Desi�s reaction to Marinol for Dr. Winters to see. Desi�s nausea had diminished but so did her ability to think.

She was given Zofran for her next dose of medication that night.

I went to the nurses station to get coffee and overheard them talking about going from one extreme to the other, Deseree Martinez�s blood pressure at a dangerously low level and Anthony across the hall at a dangerously high level. Anthony was the little boy who was placed on a respirator. I walked away holding a cup in one hand and rubbing my face with the other. I was exhausted and prayed that we would be able to get out of there and home soon.

It was around 1:00 a.m. Mom was staying in the room with me overnight since Desi had gone into shock. She got up to get coffee at the nurse�s station and walked back opening the door just a little to whisper for me to peek my head out. I walked over to the door and saw that mom was washing her hands to come back in the room. She spoke quietly so as not to wake Desi. Anthony had just been taken off the respirator. �He died just a few minutes ago.� Mom�s voice was cracking and I just listened to her telling me that the mother was outside the room being consoled by Dr. Winters and the nurses. I closed the door, grabbed my shoes and cigarettes and left Mom with Desi. I needed to leave.

I sat on the dark porch at the dorm smoking cigarette after cigarette, thinking, crying, and looking up at Desi�s window.

Jill and our social worker, Sue, walked out of the emergency entrance and across the street to the dorm. It was about 3:30 a.m. and both were holding onto the Anthony�s mother. They walked up the steps of the porch and looked over at me when they noticed the light from my cigarette. They didn�t say anything and continued walking to take the mother up to her room. She was crying and I let out a loud groan and started sobbing. I wanted to scream, cuss, and break things when I heard her. Her cries ripped away at my heart. I kept saying �Oh my God� over and over with my face in my bands. I covered my ears so I couldn�t hear her and kept shaking my head wanting it to stop.

Jill and Sue came out about twenty minutes later, walked over to me, sat on each side of me and held my hands. We talked about death and dying; how kids seem to know when they are getting ready to die. The stages of emotions a parent goes through, etc. Sue said this didn�t mean this would happen to Desi. I needed to keep strong and positive. I found enormous comfort in this because I felt the team had not given up hope. You get a sense that the doctors are keeping things from you in order to alleviate panic and that had been in the back of my mind since Desi went into shock. I asked if Anthony was in any pain before he died and they assured me he wasn�t. Jill sat with me until I was ready to go back to Desi�s room.

I woke up after being asleep a short time. At first I didn�t know where I was. Lights filled the room. Blinking lights everywhere, and machines beeping. I gradually became aware of my surroundings. Mom was sitting up in the chair sleeping with a sheet covering her as the sounds of the machines whirred around me. Desi was hooked up to thirteen different machines. She had three IV poles. I looked around and all of a sudden it hit me. The shock of all these machines keeping Desi alive. My eyes went from one light to the next. I felt like they were all closing in on me. I leaned back against the wall and took deep breaths, trying to calm myself and look away from the machines. I let my head fall back on the pillow again praying for strength.

Sunrise was breathtaking in Omaha. A bright orange color filled the morning sky. I loved to walk out early in the morning to greet it. I would and sit on the porch to wait for Dad to come down. Mom came down shortly after and said Desi was still sleeping. She was going to go shower and eat breakfast and would be back up in a little while.

The team came to Desi�s room suggesting Desi be put on a higher dose of morphine because her pain was worsening. Desi didn�t want this because she was afraid of addiction. They tried telling her it would not hurt her and she would not get addicted. She kept shaking her head no. Finally, after promising me they would keep her on the higher dose just until she could handle the pain and then take her completely off, Desi agreed to it.

I was at the sink cleaning out Desi�s pan after handing her another to vomit in (I always kept two going at all times and ran back and forth cleaning out the other) when I heard her make this awful sound. I looked around and saw her with tears in her eyes, motioning for me to look. Inside the pan were chunks of skin. She opened her mouth and her tongue looked as if someone had taken a knife to it and cut the thick layer of skin off in several different places. Desi panicked. I told her everything would be ok. I was shaking trying to hold back my own tears because I too was frightened. I called the nurse to have her take a look. She said this was to be expected, Desi�s tongue would slough off too. Why hadn�t they warned us of this?? When talking to the doctors they told us how we needed to prepare for a rough, rough road but I was extremely angered that we had not been told THIS would happen. It frightened Desi and had we known about it prior to transplant, she could have mentally prepared for it.

That afternoon Desi went into shock again. Mom was keeping track of the numbers on the machine and we feared we were headed for this again. Diedra was sitting next to Desi when the team of doctors and nurses came rushing in, pushing us to the back of the room. Dee managed to hold her ground and stay with Desi holding her hand. The bed was tilted, syringes being passed around and injected, numbers being shouted out as her blood pressure quickly fell, and orders to try more of this or more of that. Nurses were scrambling in and out of the room. I stood in the back covering my mouth with my trembling bands, crying. Suddenly Dee moaned, �My God� and started to cry as she pointed down to Desi�s hand. Desi had two fingers tightly crossed for good luck.

Desi won another battle that day.

A �cold blanket� was ordered to keep her temperature down. When it arrived I thought it would be cold to the touch but it was warm. They explained that the blanket was the temperature a body was supposed to be. This would help bring her temp down when it �spiked� to numbers above 104.

They brought in a special bed for Deseree. The mattress had a constant air flow set at a certain temperature to be maintained at all times. At the foot was a computer console with a screen Indicating Desi�s body weight (which would keep track of even the slightest bit of weight gain indicating excess body fluid and danger of going into septic shock again), temperature of the bed, status of each part of the bed, and numerous other things. It would be able to calculate these stats every second of the day and night. It was imperative that they be able to get every little piece of information they could as to what Desi�s body was doing at all times.

We were told because of the TPN Desi was being administered, she was diabetic and needed to be put on insulin because her blood sugar was at a dangerous level. In addition to that, she would need more platelets because she was falling in dangerous levels there as well. The doctors told us platelets from a sibling worked better than an anonymous donor. Giga gladly went down to the pheresis room for collection. Giga has a horrible phobia about needles so this was a beautiful way for her to help her sister.

Giga was in agony over the fact that she would have to leave today. She had no choice. She had an audition in Denver and could not reschedule. We assured her she would only have to be gone for a little while. Since Mike needed to work a week, she could go home with him and drive back with him when the work week was over.

Desi was not conscious most of the time now. She had so many drugs going through her, her body and mind were totally exhausted from everything. She was very, very weak.

Giga stood on the side of the bed holding onto Desi�s hand while I sat back in the corner of the room watching her say goodbye. She spoke softly to Desi telling her she would be back in a week. Giga knew Desi heard everything she was saying because Desi would squeeze Giga�s hand every once in awhile. Giga stood there for a long time not saying a word. I knew she was crying. She took off the crucifix ring grandma gave her and placed it on Desi�s finger. Without opening her eyes Desi slowly brought Giga�s hand that was holding hers up to her lips and kissed it. That room was so filled with love in those moments. We knew Desi was trying to tell Giga she would be ok and that she loved her with all of her heart.

Giga walked out with tears streaming down her face unable to talk. I was much the same. It dawned on me that Giga might need me, so I checked to make sure Desi was sleeping and ran out of the room. I stopped when I saw Lori, another one of Desi�s nurses who became very close to the family, holding Giga in her arms. I thought I�d leave them to continue. It was good for Giga to talk to Lori because I knew Lori would keep reassuring her Desi would be ok - the words wouldn�t be so empty coming from staff. She also knew how much Lori loved Desi.

That afternoon Desi was given Giga�s platelets. They worked wonders. Her platelet levels went up immediately and stood stable for a long time because they were more readily accepted by her body than that of a non-sibling.

Around 2:00 a.m. Desi started showing signs something was terribly wrong again. Her blood pressure was going up and down minute after minute. The nurse called Dr. Winters on Desi�s bed phone. When she hung up she said that Dr. Winters had spent the night because he wanted to make sure Desi would be ok and wanted to monitor her throughout the night. It was to be his night off but he chose to sleep in the doctors lounge for any sign of trouble. He rushed in with his hair sticking up all around his head and eyes still trying to focus. In a matter of minutes we went through the horror of septic shock again. This time Dr. Winters got on Desi�s phone and called Dr. Woolridge at home. Dr. Winters gave Dr. Woolridge Desi�s vitals. Dr. Woolridge told him what to try next and Dr. Winters told the nurses what to administer and how much as per Dr. Wollridge�s instructions. Nothing was working this time. Dr. Woolridge got in his car and continued to give instructions over his car phone while in route to the hospital. I was in a daze once again and everything seemed to be animated. Suddenly the doctors and nurses in the room sighed relief and I heard, �HERE we go!� Desi�s blood pressure was coming up. Dr. Winters told Dr. Woolridge he could slow down and get there in one piece. Dr. Winters kept smiling and taking deep breaths while running his hands through his hair. We knew Dr. Winters was scared. He probably felt like a ton of bricks had been lifted off his shoulders. He continued to stand there watching all the machines making sure she was ok. �How do you feel, Deseree? Like I look??� he asked. Everyone laughed because he really did look a mess!

Desi went through septic shock one more time the following day. But this would be her last. Over the next few days, Desi�s fever started coming down. She worked back enough strength to start writing a couple of words on her notepad again. They were hard to make out because it look as if she bad been holding on to a vibrator. Giga remembers everyone trying to figure out what Desi was trying to say. We looked at the notepad and saw �prostitution.� Was she hallucinating again? She�d shake her head and point to the word again. We figured it out by process of elimination taking words that ended in �tion�. She�d make a second attempt to write a word we couldn�t make out. But that usually failed as well. The second word looked worse than the first! We finally figured it out - RADIAtion. That was the word she was trying to tell us. It was cute to watch her write each letter, slowly, and concentrating hard. One day we noticed her spending a lot of time writing in that notebook. When she was finished she handed it to me. She wrote a list of things she wanted when she was finally able to eat and drink again. Grandma promised her a Thanksgiving dinner when we got home.

Every so often I noticed Desi staring out the window and knew she was aching to smell the fresh air once again. She was improving and little by little able to say a word or two. The doctors said even though her infection was under control and she wasn�t going in to shock anymore, she was still not out of the woods until her blood counts started showing. Each morning I woke up and checked to see if the lab had posted her CBC sheet outside her door. Each day I would see her CBC column blank. I dreaded having to walk back in and shake my head to Desi. �It takes time, Danise.� the doctors would say. �Time� had a totally different meaning to me now. Time is something all of us have so little of The morning of August 19th I woke up and quickly walked out to the hallway to check for the sheet. It hadn�t been brought up from the lab yet. I shook my head at Desi through the window and noticed Dr. Gordon�s noseprint and pointed at it for Desi to look, she smiled. He was there a couple of days before looking to see if Desi was ok. He pressed his face up against the window, crossing his eyes and bringing a giggle out of Desi. Everyone was back to carrying on with humor after going through a stressful and frightening experience. I opened the door just a little and told Desi I was going out to the porch for a couple of minutes. While I was walking down the hall I noticed a man coming out of the elevator carrying sheets of paper. I watched to see which direction he was going to turn and followed him when I knew he was going to the transplant wing. I ran back to Desi�s room, suited up and told her the labs were here. I checked every couple of seconds to see if they were posted on her board outside her room. I laughed when I noticed I was making my own noseprints on the other side of the window. A nurse walked up, took the old counts down and stuck the pushpin in the new sheet. I opened the door, leaned forward and read �.1� SHE HAD A COUNT!! The stem cells were starting to work!! We were on our way and Desi would be feeling better soon. News spread quickly throughout the hospital wing amongst the patients and their families.

Desi�s pain was low enough to bear now. She wanted off of morphine. This would be a long battle with the doctors because they felt she still needed to be on it. We compromised again and agreed to start taking her dose down little by little. This would have been the case anyway because it would be harmful to take her system off of it cold turkey but they weren�t ready to take the levels down in normal increments. They were being very cautious and took her dose down the slightest bit each time.

Each day the room would appear larger because the machines were being taken off of Desi little by little. We loved seeing them taken away. Each time I�d wake up in the middle of the night I would feel less and less fear.

A week later she was gaining back strength and longing to be able to go home. She was able to start walking the hallways because her counts were at a safe level. We would stop at the end of the hallway looking out the window down to the porch where everyone would wave to her. I swallowed the lump in my throat just watching her look down at the Porchridge Family. She heard so much about each and every one. I knew her heart ached to be outside with them. I watched her face as she�d stare out the window smiling. �C�mon, Desi,� I whispered as I grabbed her IV pole. �Where are we going? What�s wrong?� she asked while shuffling her feet inch by inch. She had strength to walk but only at a slow pace taking very little steps. �Shhhhh, just act like we�re going around to the other side� I whispered while looking around over my shoulder. I led her to the double doors leading out to the elevators and gently pushed her through. She tried resisting but I was stronger and, yes, braver. It was not unusual to see people walking around the hospital with IV�s, but her bald head would be a slight giveaway so we needed to be very careful. I remembered Dad telling me about a tunnel on the bottom floor that led to the dorms. We never did find out what it was used for but it would serve our purpose. We got off the elevator and acted like we were turning to go to Nuclear Medicine until a couple of doctors walked away. I twirled Desi�s pole around facing the other direction almost causing her to trip over the tubes. �Oops, I�m sorry, Desi. But if you want to make this escape successful, you have to do it swiftly, ok?� Desi rolled her eyes and laughed. The tunnel was made of rough cement painted with black lacquer with a little lightbulb every hundred yards or so; a dark eerie kind of place that echoed our steps making it that much more like a �James Bond and the Body Snatchers� movie gone bad.

We reached the end of the tunnel and opened the door to a bright light causing us to squint. It was so perfectly ironic. In those few seconds I thought of our journey through cancer and what Dr. Greffe said about being the light at the end of our tunnel. Had we just done what would be a sign that everything would be ok now? I felt a rush of adrenaline run through me. �We�re FREE, Desi!!�

We sat outside with everyone keeping watch for signs of white coats coming for us. Desi enjoyed being outside. She didn�t say much but kept smiling and lifting her face towards the sun to feel the warmth while letting the breeze touch her face. She was finally able to meet the Porchridge Family and they were very, very happy to meet my Desi.

Desi sat up in the chair in the corner of her room receiving Giga�s platelets. They were starting to fall again. Since Giga�s worked better than any other Desi could receive, they requested more be collected from Giga in Denver at the Red Cross and have them flown to Omaha. Desi smiled, let her head fall back against the headrest, closed her eyes and said �God, it feels so good to be getting a part of Giga, Mom.�

Mike and Giga came back to Omaha to see Desi looking much better than when they last left her. Giga went to Desi�s school to get her yearbook signed and surprised her with a videotape of Desi�s friends and teachers. Each with their own personal message saying how much she was missed. Desi cried from beginning to end.

I walked to the porch and told Dad he should go up and see Desi now. She was alone in the room and he could see that she was well. I assured him she looked good. Dad stayed away from Desi during the rough times because he couldn�t bear the thought of seeing her in that condition. As long as he was kept informed as to what was happening at all times, he would deal with things that way. He went up to sit with her while I cleaned up in the dorm room, and when he came back down from his visit with her he was fairly quiet. �I thought you said she looked good, Neesey.� I smiled and told him she did, compared to what she had been looking like.

Desi�s counts had come up faster than the doctors had expected. They said she could be released from the hospital the following day. Mom told my Aunt Phyllis, Aunt Marsha, and Grandma.�Cancel coming up, we�re coming HOME soon!� Desi was on cloud nine. She started making plans as to what she wanted to do when she got home. First and foremost was her need to be taken up to the mountains and left to sit at a stream by herself. All the time she had been going through treatment she remembered the �guided imagery� suggestion her psychologist in Denver taught her. She imagined a beautiful, peaceful place to rest and think of the sounds, scents and picture all of the good things there taking away her cancer. Desi needed to go there and thank God for everything. Desi told me she was glad she got cancer because she knows what is important in life and what is not. I�m not sure I�ll ever reach that way of thinking when it comes to Desi�s cancer, but she is very much at peace with those thoughts.

She was also looking forward to taking her Make-a-Wish Hawaiian cruise we had to put off due to the transplant. This would be a wonderful time of rest.

We were told Desi�s ovaries were damaged with the treatment and could never have children. Desi didn�t mind this because she had always said she wanted to adopt when she was older. There were too many children in foster homes or homeless. The doctors told Desi and Giga there was an option of Giga being able to help Desi in donating her own eggs. This was something they could think about in the future. That word sounded like a beautiful song to me - �future.�

Since Desi�s body had gone through so much trauma, the Endocrinologist met with us to discuss something that would be needed for any kind of injury Desi might have. If she got a deep cut on her finger or broke a toe, anything that could cause her body the slightest stress, we needed to give her a shot of cortisone so her body wouldn�t go into shock again. Her endocrine glands were not working properly. She would need to be seen by a specialist after returning home.

Desi�s legs had not yet recovered from the blood clots either. We were told they might be swollen for a very long time. There is a chance that she would always have problems with swelling as the clot was still there. I was thankful it stayed there when she was going through all of her other traumas. A clot we can live with.

September 1, 1993 - Desi was be released from the hospital. People were in and out of her room wishing her health and happiness and telling her she was a beautiful and strong young lady. A giant card was brought in with all the signatures and well-wishes from doctors and nurses. Lori wrote �...go out and find your stream. Sit by it, listen to it, smell it, touch it, and find that peace you so rightly deserve.�

Marsha had tears in her eyes when she had to say goodbye to Desi. She made Desi promise to send her a tape of the Colorado Youth Symphony Orchestra Desi was in. She also told her to please let her know when she had her last concert her senior year so she could come to Denver to see it. Nurses kept coming in giving me a message from Dr. Winters to please not leave until he came to see us. He would try to see us as soon as he could. As of that day he had been transferred to another area of the hospital (interns are assigned to various parts of the hospital each month).

We met with Desi�s teacher to go over last minute details as to what she put in her report for the home-schooling Desi needed. She wasn�t able to do as much schooling as we had hoped during her transplant. But Desi sure �learned� more than she cared to.

Dr. Gordon bid his farewell and told me I caused quite a stir. �You did your job, I did mine� I replied with a smile. He called Dr. Greffe and said, �Hi, Brian! This is Gordon in Omaha. I�m with Mrs. Martinez now and have given her all the discharge hoopla stuff I�m sending her back to you, take her - PLEASE!� Desi and I almost choked laughing so hard.

It was hard to leave Desi�s paintings on her window. Somehow it felt like they should have been going with us too.

Dr. Winters came rushing in and quickly sat down on the chair beside Desi�s wheelchair. He told her what a remarkable young lady she was and joked that she made him refer to his medical books more often than any other patient. She kept him on his toes at all times. He talked about how he had his doubts many times. He was amazed and inspired when she would pull through. He wished her the best life and told her to look him up to say hi when she came back for her year checkup. He turned to me and told me Desi�s outcome could not have been possible without my participation. �You were very much a part of her sitting here today, Danise. I have learned a lot from you. You were always here making sure things were running right on track and no mistakes were made. I learned to compromise when I was unsure of my own judgment calls. I learned to listen. I admire you.� I thanked him for being so flexible and that he was going to be a very good doctor. He doesn�t think listening to parents� suggestions are a direct hit to his ego like so many other doctors. I thanked him for going that extra mile for Desi so many times, and taking care of her on his own personal time. He smiled and looked at Desi saying she was a very special girl.

We walked down the hallway to the staff room where we knew the team was meeting at that hour. One of the nurses opened the door and we gave them a big basket full of chocolates, fruits, nuts, cookies, etc., as a �thank you� gift. They wished us well and told Desi It was so good to see her looking healthy again. Desi told them thank you for everything they did.

All of the family was busy packing up the cars for their trip back home. Desi and I would fly back later on that afternoon. My mom asked where Todd had been all morning. Everyone on the porch said they hadn�t seen him yet. That was strange because Todd was always there every morning, noon, and night. It hit me that Todd didn�t want to say goodbye. I told Mom and Dad we should go up to the room to see him.

We stood in the hallway waiting for Todd. The nurse told him we were there and he walked into the bathroom telling her to tell us he�d be out in a minute. It took a long time before Todd would come out to the hallway. He was quiet but still showed that beautiful smile when Dad started teasing him. Mom held him and told him he needed to start taking care of himself, �Don�t go out to the porch in your socks anymore, ok, Todd? You�re going to catch pneumonia, honey.� Mom was crying because she hated the thought of leaving him there. We all did. Todd kept nodding and saying ok to all her instructions. She told him he needed to start getting better before Thanksgiving because he was going to spend it with us. His head had been facing down most of the time but he quickly lifted it and his eyes lit up, �Yep, be ready for me, Grandpa!� Dad joked and said �Oh, God, is he gonna� be there too??� We laughed, and so did Todd. I hugged him and gave him a little wrapped giftbox with a little note attached saying if he should ever feeling lonely, if he ever needed to be reminded he was loved, or if he found himself in need of a smile, to take this box out and know that we are with him. I promised to send him homemade cookies and that we would call every week. He liked this idea. There was a long pause and Dad walked up, shook his hand and told him to take care of himself, he wasn�t looking good. Dad didn�t want to be worried about him. Todd nodded and said he would. �And stay in your room, Todd!� Desi, Dad, Mom and I kissed him and said goodbye. This was the hardest person for us to leave of all. But we were looking forward to having him with us for the holidays.

We went back down to the porch and said goodbye to the rest of the family. We loaded Sophie up with food, soap, towels, and everything else you could imagine. Mom and Dad asked her to take care of Todd and that we would keep in touch. When Dad said goodbye to Bucky, Bucky started to cry. Dad told him he was going to have to find another big man to size up for a suitable liver now. When my family pulled out of the parking lot, Bucky cried more. Our lives had been so touched by one another. Jerry and Tina told us goodbye. We said we�d pray that his treatments were working. Desi wanted so much for Jerry to get better and hoped that both of their experimental treatments worked. They told us they would call each week to let us know how everything and everyone was. We had become a family in every sense of the word. It was painful to leave one another.

Our shuttle had arrived and Bucky offered to help carry mine and Desi�s bags to it. Todd was walking toward the porch slowly and his eyes were red. I knew he had been crying too. I waved and swallowed the lump in my throat. Bucky turned to me and said �We�ll take care of him. Tell your daddy we�ll watch over Todd.� I nodded and waved goodbye to Todd. He slowly waved back.

Our hour flight home seemed to last only a couple of minutes because my mind was so full of what we had left behind, and what we were taking back home with us. A lifetime of learning had taken place in Omaha, NE. We would never be the same.

Todd�s health went downhill after we left. Tina kept us informed and said that Todd was always talking about getting better so he could go �home� to grandma and grandpa�s. I called to see if he liked his cookies I sent, and about the package mom sent him one night, and be sounded like he was having a tough time breathing. He assured me he was feeling ok but sounded down. A couple of days later when I called, they told me he was in Intensive Care. He had taken a turn for the worse. I called Sue (Desi's Social Worker) to ask if she check on him for us because they wouldn�t give information to anyone but immediate family members. We went through a long night of worry. Sue called back early the next morning to tell me Todd died.

A part of us died along with him.

His presence is still strong within each of us. He will always be a part of our hearts. I wrote a long letter to his dad and told him about the Porchridge Family and everything about Todd while we were there. I knew he would want to know how very loved he was and how much fun everyone had with him. His dad never wrote back, but Tina called to say that a plaque with �In memory of Todd Sousie...� had been placed on the porch months later and when they asked who sent it, the lady in the office said �Todd�s dad.�

Jerry and Tina were also in constant touch with us. We knew Jerry was not doing well. The last time I spoke with Tina, I could hear Jerry coughing in the background and my heart sank. Mom and I sent herbs to make tea for his cough. Jerry died just a couple of months later.

Dad received Jerry�s hat collection in the mail a week later. Jerry remembered. Mom called to wish Sophie and her family a Merry Christmas that Christmas Eve. Sophie told her the son we met in Omaha had just died that morning in a car accident.

Sadie died in Grand Junction when doctors felt there was nothing else left they could do for her. Her grandma sent a Christmas card that year saying her suffering was over and she was flying with the angels. I like to imagine her helping push the IV pole of a little child with cancer.

To All Parents

Jeremy developed another tumor in his lung since the last time we saw him. I received a call from Jill around 1:00 a.m. one night telling me Jeremy was in his last hours. I waited by the phone praying and didn�t want to tell Giga and Desi until the morning. His whole family was there. He was sitting in a chair and suddenly told everyone, "I see GOD. I SEE GOD. I see him. He's so BEAUTIFUL. I love him SO much." He died a short time later.

Months later his dad would call to see how Desi was doing because he knew how much Jeremy worried about her. I told him she was doing great and how Jeremy must have rubbed off on her. She was planning on getting a rubber band or something, hanging out her bedroom window in the middle of the night and setting off the neighbors car alarm because he wakes us with it each night. The next week an envelope came in the mail, it was for Desi. She opened it up to find a huge, thick rubberband. Jeremy�s pranks live on.

Bucky finally received his liver and is doing well back in �Nothe Caroliiiiiina."

Chad spent the day with us one Saturday, jumping, yelling, laughing, playing and teasing his little brothers. He was back to being a boy with little evidence of what he had gone through except for a slight limp and slower speech. Cathy and I held each other and cried. �Neese? We�ve gone through hell and back but we made it. We made it.� I nodded and held on tighter.

Iris is doing very well and on her own attending college with no signs of cancer.

A couple of months after we returned from Omaha our family who had never gone through anything bad before Desi, would suffer still. My cousin's daughter, Kyla - fourteen years old, committed suicide. She and her sisters would send little notes to Desi while in Omaha. Kevin, her father, held me close and asked why. �How could Kyla give up when Desi had such odds against her and she fought hard to live?� I didn�t have the answer and doubt anyone ever will.

A few short years later, Auntie Phyllis died. She was dad's sister, and mom's best friend since childhood. It was an enormous loss for all of us. But I suppose her heart was aching to be with my cousin's daughter, her grandchild, so much that it weakened her body and spirit. Cancer took Auntie Phyllis at a very young age, but she is with her "special angel" now. There must be some comfort for Kevin, Kathy, their other daughters Kara, and Kristin, to know that Kyla is not alone. There is not a day that goes by that I don't think about Auntie Phyllis. I miss her very, very much.

Another cousin, JM, fell ill and because he had no oxygen to the brain in route to the hospital. He would remain in a coma the rest of his life. Mom and I spent our time at the hospital watching over him when Aunt Kristine couldn�t bear to watch him die. He was taken off nourishment and fluids. I sat in wonder about how our lives so quickly change and how we take advantage of our days here on earth thinking we�ll be here tomorrow. I feel a horrible pain when I remember my Aunt Kristine saying while Joey lay dying, �I'll never have anyone call me mom again, Neese.� I think of how blessed I am. JM was buried in his favorite item of clothing - A jacket with a silk-screen cover of Marty's band on the back. How he loved Marty's music.

Desi got her wish to sit by her stream. We helped her down the embankment and left her there to reflect back on her experience. I watched her sit on the rock and gaze out into the water and thought of how this life here on earth is so fleeting and tenuous. Each day is a gift from God and I thanked him for all of our blessings. I thanked him for teaching me I have the strength I never thought possible. It comes from deep within. He brings it to surface when you need it most. There is nothing too difficult to handle, too grave a situation, or a problem too hopeless, if you have your health. Some would give anything to have the crosses you bear if it meant they could live.

Desi�s one year checkup showed all tumors were gone, everything was healed. �It's as if those x-rays were taken of you or me.� Dr. Greffe said standing in the doorway of the examining room after having gone down to look at the tests. We have been told by all doctors that bones take years to heal and residual would show up on x-rays. He repeated, �There is NOTHING there.� We all looked at each other across the room and smiled.

Our Desi, our miracle.