Missy's Story

Her Progress - Her Triumphs
Via her mother's journal 

     Courage is being scared to death but saddling up anyway. - John Wayne 

    January 2004 - March 2004

    If you have never accessed this page before, and wish to read the updates in chronological order, you will have to start at the bottom. The newest information is at the top of the page, because most visitors are friends and family, who frequently access this page.

    Life can only be understood backwards; but it must be lived forwards. 
            - Soren Kierkegaard

    March 31, 2004

    Bruce visited with Missy all day. He talked with the doctors. Dr. Smith told Bruce that they may keep her in the hospital until they do the transplant. He assured Bruce that the transplant will go forward. Dr. Stuart is 90% sure that the problem is an infection. She is still getting antibiotics.

    March 27 - 28, 2004

    The PET scan didn't give them any new clues. Missy received a blood transfusion. I spent the weekend with Missy, staying in her room. On Saturday, I went to the mall to get her some new pjs. When night clothes are what you mostly wear, you need new ones more often. They have her on cephamine. Her fevers are not so high now. On Sunday night, I drove home, so that I could go back to work.

    March 26, 2004

    I headed back to Charleston early this morning and Bruce stayed on in Sumter to work. I will sleep in the room with her tonight. Missy had a PET scan today. Dr. Stuart arranged it. He told me that he knows the lady in charge over at the Low Country Pet Scan Center and was able to get her in for the test today. They allowed me to ride over to the center will Missy in an MUSC transport van. We were there for about 3 hours. They were so nice over there. They really fussed over Missy. The lady in charge told me that usually, it takes weeks to get a PET scan appointment, but that Dr. Stuart had called her and there happened to be an opening. Missy got the appointment because Dr. Stuart called himself.

    March 25, 2004

    Missy is still running a fever. They have her on the antibiotic Vancomycin. She has nausea and can't eat much. She has sent us out in the past few days for Arby's roast beef sandwiches, taco salads, etc., but she only picks over it. We couldn't get a hotel room again, so we went back to Sumter for the night.

    March 24, 2004

    Bruce and I were at the hospital in Missy's room pretty early. She is still running a fever. Dr. Stuart told us that they would have some results from the biopsy by this evening. When we met with them, the results were that the sample didn't show anything, no infection, no Hodgkin's. We stayed in the Riverview Inn again.


    March 23, 2004 - Christian's 4th Birthday

    Dr. Frie-Lahr called. She told me that Missy needs to be admitted. My mother took her to Charleston, and she was admitted during the early afternoon. Mama called me about 4:30 on my cell phone. I was in the computer lab, teaching the computer class. She said that I should go on down to Charleston, because they had seen something new on the CT scan that was done yesterday. I went home and Bruce and I got ready to go. I kept calling Missy's room but didn't get an answer. I assumed that she had gone for an xray. Finally, I got her on the phone. I was very surprised to find out that Dr. Stuart had arranged for her to have a needle biopsy, just after my mother left for Sumter. The nurse told me that he went down and talked to the interventional radiology doctor to get him to do it at the end of the day. The nurse told us that Dr. Stuart has a lot of clout around here and can get things done. Bruce and I visited with Missy for the evening and then checked into the Charleston Riverview Inn. 

    We all missed Christian's birthday.

    March 22, 2004

    We arrived in Charleston early for Missy's appointment. The traffic wasn't so bad since we didn't have to be there so early. They took her on back and Dr. Frie-Lahr checked in on her pretty quickly. Missy is still running a fever, but it's not a high fever . Dr. Frie-Lahr decided to order a CT scan. She will have the pulmonolgists look at the scan and the xray from Thursday and consult with them and the radiologists about what they think. She said that they might suggest a different antibiotic. Jill, the bone marrow transplant coordinator told us that the transplant is on hold again, until Missy is over whatever is causing the fever. She said that if we do not hear from her by Wednesday, to call her so that she can let us know what's going on. Missy was wheel chaired over to the main hospital for the CT scan. They worked her in. We were leaving by about 11:30 and got back to Sumter about 2:00. (We stopped to get Missy a pecan waffle and orange juice at a Waffle House . She didn't eat much of it.)

      "If you're going through hell, keep going." Winston Churchill

    March 21, 3004

    Missy is still running a fever. Hopefully, this will be the last day of fever. Either way, she goes to the doctor in Charleston tomorrow. She is eating, just small amounts, but eating. I also encourage her to drink

    Sean and Heather went to the Nascar race in Darlington. Sean called 2 or 3 times to let us know where he is sitting, hoping that we would see them on TV. We could hardly hear him on the phone.

    March 20, 2004

    Missy is still running a fever, off and on. She is coughing some, but it's not that awful seal bark cough that she used to get. She says that it is more of a dry tickle. Hot tea helps.

    Mikey and Christian went with Mama and Papa Howard to Morgan's 1st birthday party. Missy is throwing up (spitting up is more like it) when she coughs. Her gag reflex is very sensitive.

    March 19, 2004

    Missy's temperature was normal, until late afternoon. I spoke with Jill, the bone marrow transplant coordinator on the phone. Missy is to come in on Monday, so that they can see how she is doing from this illness. Then, she would come back the next week and hopefully, the transplant can be scheduled for about 10 days or so from now. Sometime at the end of this month.

    March 18, 2004

    Missy woke up with a fever this morning. Actually, she woke up at 3:30, but I didn't know about it until I went to make sure that she was up so that we could get ready to leave for her doctor's appointment in Charleston.

    When we got there, they had her put on a mask and go on into an exam room. Cindy, Dr. Frie-Lahr's nurse drew some blood. Dr. Myers came in and examined her, then Dr. Frie-Lahr. 

    It was decided that once again, Missy has a touch of pneumonia. Her blood work showed that with antibiotics she should be able to fight it off. Her counts are good. They decided to have her go ahead and do the MUGA  test today. (That's a way to take a look at the heart muscles.) They couldn't get an echocardiogram until sometime in April, so they decided to have the MUGA done instead.) The breathing test was canceled. Because of the pneumonia, an xray was also ordered.

    They gave Missy some Rocefin (an antibiotic) by IV and sent her by wheelchair over to the main hospital to have the MUGA scan done. her appointment was at 11:00, but the test wasn't done until almost 1:00. The lady who drew Missy's blood and later did the test, found a stretcher in a quiet room for Missy to lie down. (Missy told her that she didn't feel well and was running a fever of about 101 degrees.)

    After the test, Missy was wheeled back to the Rutledge Tower for the chest xray. She got to see Dr. Myers again at about 3:00. He wrote her a prescription for Tequin. He said that the xray did show a bit of pneumonia, but that since her white count is good, she should fight it off in a few days. He said to expect her to run a fever for 2 or 3 days.

    Jill, the bone marrow transplant coordinator had told us that there was going to be a delay anyway. There is a shortage of one of the medicenes that they need for the transplant.

    March 17, 2004

    Missy is still feeling pretty good, so we went to Riverbanks Zoo in Columbia today. We all had a wonderful time.  We were careful to keep Missy out of the sun and she wore a wide brimmed hat. (Thank you, Debbie McLeod and your father for the guest passes. I only mentioned in passing to Debbie in the grocery store that we planned to go to the zoo and she brought us passes for the zoo and merry go round tickets before I had our groceries unpacked.) We ate lunch at the Burger King in the zoo, sitting where the boys could see a crocodile from our table.

    "I believe that friends are quiet angels who sit on our shoulders and lift our wings when we forget how to fly." ---Unknown 

    Feeding a giraffe.

    When we got home, there was a message on the answering machine from Jill, the bone marrow transplant coordinator. They want Missy in Charleston tomorrow morning for bloodwork, a checkup, lung test, and echocardiagram. I called Jill and she explained the plan. We'll come back home tomorrow. Missy will need to return on Tuesday. If they can get the transplant medicine (which has been in short supply), they will begin the transplant process on Tuesday, March 23. (Christian's 4th birthday.) If they can't get the medicine, they may do another round of ESHAP.

    "There are some people who live in a dream world, and there are some who face reality; and then there are those who turn one into the other." ---Douglas Everett 

    March 14, 2004

    Missy is feeling pretty perky. We decided to take the boys to Swan Lake this afternoon. They had a great time. The swans weren't hungry for the bread that we took, but we had a great time being outdoors. Mikey and Christian loved the playground.

    March 12, 2004

    Missy had a bit of an upset stomach, so I called Dr. Smith. He called in a prescription. We don't want to deal with C. dif. again.

    He told me that he had talked with Dr. Stuart at 2:00 and that things were being set into motion for the arrangements for the transplant. The bone marrow transplant coordinator is working on getting everything set up. Dr. Stuart's office should call us on Monday. Dr. Smith said that he would call us this weekend to check on how Missy is feeling.

    March 11, 2004

    We left Sumter about 8:00 so that Missy was on time for her 10:15 CT scan appointment. They took her back about 10:30 and she was back out 10 minutes later. This was the first time that they have done a CT scan on her without an IV. We went to California Dreaming for lunch. Missy loved it. Our table overlooked the Ashley River. We could see all sorts of boats, anchored and moving, but the best part was a group of about 6 dolphins putting on a show for us. Missy has always loved dolphins.
    She had a great time.

    With her doctor's appointment not until 3:30, we had a lot of time to kill. We went to Folly Beach, parked at the county park, and walked out onto the beach. It was so windy and we were cold. Missy had her heavy coat on, but I only had on a leather jacket. We didn't stay out there long. We drove back over the James Island connector and then on down into Charleston to the Battery and then we just explored various streets that we had never been down before.

    We arrived at the doctor's office an hour early, deciding to sit and read in the waiting room. About 3:00, Missy was called back so that Bonnie could draw blood from her PICC line.

    Dr. Smith came in, talked with Missy and checked her breathing. He said that her labs weren't back yet.

    They were pretty busy, so Dr. Stuart didn't get in to see Missy until 4:45. Dr. Smith  said that her blood counts were great. Dr, Stuart explained that the CT scan showed that the tumor had shrunk even more. He attributed the response to the platinum in the ESHAP.

    He explained that Dr. Frie-Lhar was out of town and the bone marrow transplant coordinator was not there, so he couldn't really get anything set up until her got together with them. He said that they might decide to do another ESHAP before the transplant or they might decide to proceed to transplant next week. He will let us know.

    So we headed back home. Boy, is the 5:00 traffic something. I'm just glad that we don't have to go over the Cooper River Bridge. The on ramp to cross the Cooper was really backed up.

    We arrived at my brother Timmie's house at 7:00. Today is his son Scotty's 21st birthday. Cake and ice cream were at 7:00 and we just made it.

    March 7, 2004

    We went out to eat at Outback. Missy wanted prime rib. She ate almost the entire 8 ounces of meat. We had a blooming onion and she ate her share of it, as well as bread, and most of the baked potato. She is feeling great. We all said that we ate so much that we should eat cereal for supper tomorrow night.

    March 6. 2004

    Jamey came to visit. He wanted to go to Fu Garden after hearing about it, so Missy took him there for lunch. We made tacos for supper. Missy made fresh guacamole dip. She ate great again today. She is really feeling well. It is amazing to me how much more energy she has already.

    March 5, 2004

    Dr. Smith called and told Missy that her platelets are rising, so she won't have to come to Charleston this weekend for a blood transfusion. We went out to eat at Fu Garden. Missy ate a lot. She enjoyed the outing. She wants to go out to Outback to eat some steak before she has to go back to Charleston on the 11th. We decided that we will eat there on Sunday for supper.

    Missy took her two dogs, Angel and Flex, to the vet for their yearly shots. She called, made the appointment and took them today. She said that Dr. Bell got someone to take Flex to the car for her. He weighs over 60 pounds. He is a big Dalmatian. Dr. Bell was worried that he was pulling her all around.

    March 3, 2004

    Missy's blood tests today showed that her platelets had dropped a little more. Dr. Smith wants her to have another test on Friday. If her platelets drops, he wants her to come to Charleston to be admitted overnight for a blood transfusion. Missy's energy level sure has increased though. 

    March 2, 3004

    I was amazed that after school, when I was in a math meeting, that the room where we were meeting was called and Lynn (the school secretary) told me that Missy was in my room. She had driven herself to town. She needed some cash to go shopping for some clothes. She did too, all by herself. She went to Goody's and bought some clothes and a straw hat. With the temperature rising into the 80s this week, the knit hats are way too hot to wear.

    Spring has sprung.
    Sporting the new straw hat and new duds.

    You've got to get up in the morning with a smile on your face, and show the world all the love in your heart. ~ Carole King

    March 1, 2004

    Bruce and I took Missy to  Charleston for her blood work appointment. They were pleased with the results. Her platelets were a little low, but her hemoglobin was normal and so was her white cell count. Dr. Smith wants her to have another blood test in 2 days to see how things look. He wanted her to come to Charleston for it, but agreed to let Dr. Clowney do the test and fax the results to him.

    February 25, 2004

    Missy had a nuelasta shot at Dr. Clowney's office today. She still isn't eating much.

    February 23 , 2004

    Missy was released from the hospital. Bruce went to Charleston to pick Missy up. It's Tuesday, so I had to teach the computer class from 4:00 - 7:00. She wasn't released from the hospital until early evening. So, ESHAP cycle 2 is over. She has to go to Charleston on March 1. Dr. Smith says that he wants her back in Charleston  after  about the same span of time that she got sick after the other ESHAP treatment. (That way, they can catch anything that might be starting to happen with her white count, before she gets really sick.) Her next appointment Charleston after that is on March 11. She'll have a CT scan that day and see the doctor. 

    True courage is like a kite; a contrary wind raises it higher. ~ John Petit-Senn

    February 21, 2004

    My cold is still with me, so I went to the school inservice scheduled for today. (Good thing, because I had the lesson plan stuff in my book bag that saved a lot of time for the math departments of the 3 middle school and for the science folks who were helping the math department.)

    Bruce went to Charleston. He got Missy a good lunch from Marvin's BBQ over on James Island. He took her the hash from Ward's BBQ that I picked up last night. (Only Ward's has good hash.) He said that she ate well. He also said that she has gotten breakfast in the hospital figured out. She ordered eggs, ham, and toast with mayo on the side. She made a sandwich out the stuff. The mayonnaise made it easier to eat. It gave it a little flavor. Those eggs must be powdered eggs. The ham is not great either, very thin, like sandwich ham, not like breakfast ham.

    Bruce went to the grocery store and got Missy some Bryer's strawberry fruit on the bottom yogurt to leave at the nurse's station. She keeps ordering yogurt with her meals and it's blueberry every time. She does not like blueberries in anything but says that she was eating it for the benefit of the bacteria.

    He also got her some potato chips from Eckerds. She says that the salt helps cut the chemo taste in her mouth.

    The c. dif. problem has cleared up. Ten days of the medication must have been what it took.

    Bruce got home around 6:30. He said that Dr. Smith said that I could visit with a mask and washing my hands, but it worries me that I might carry an infection to her. Bruce said that they put a sign on the door "This patient is at risk for infection." That means that the nurses have to wear gloves. It must be because of the c. dif. It's spread in a hospital by way of spores getting on the hands of the nurses or techs and being taken to another room. One website that I read said that many patients  who have been on antibiotics and are hospitalized for any length of time get it. Healthy people can carry it and not get it, but can spread it to others.

    February 20, 2004

    I woke up this morning with a cold. I sure hope that it's gone by Tuesday. If it's not gone tomorrow, I won't be able to visit Missy in the hospital over the weekend. 

    February  19, 2004

    The appointment for Missy's CT scan at MUSC was at 11:00 today. I took Mikey to school, came back home, and got Missy's things loaded in the car. We were told to bring her ready to be admitted. We arrived at 10:30. I dropped Missy off at the horseshoe at the front entrance of the hospital. She said that she was too sore (from giving her dog a bath and blow-dry) to walk from the parking garage. The c. dif infection has really taken a toll on her energy. I snagged a wheel chair from the admitting area waiting room and wheeled Missy to the 3rd floor via the D elevators where the CT scan waiting area is located. She signed in at 10:50. The lady at the desk remembered her. She brought Missy a blanket because she said that she looked cold. (It was pretty warm. Missy had her jacket but had left her big coat in the Jeep.) Missy wasn't taken back until about 11:25. They were having a lot of trouble with a child needing a CT scan. He was crying, screaming, hollering, etc. You could hear him from all over. Once Missy got back there, she heard one of the tecs say that the child needed to be told by his parent to settle down. Maybe he even needed a spanking. The mother was just standing there, not saying a word. No comfort, no admonishment, nothing. I noticed the father in the waiting room with the sibling. That kid was just running all around, being ignored too. The parents will wonder some day why those kids are getting in trouble at school. Well, they were ignored by their parents when their were little.

    Once Missy's CT scan was over, we decided that the best thing that we could do for lunch was eat in the hospital. Missy was to tired and sore to deal with getting back in the car and going someplace to eat. It was noon and very crowded in the cafeteria. We could not find an empty table, so we went back out to the main lobby with our food and at there.

    Once were were finished, we decided to go on over to the Rutledge Tower where the doctor's office is located. We were getting a little cold in the lobby, with those revolving doors letting in  a draft near where we were sitting. 

    I pushed Missy in the wheelchair via the inside route through the over the street bridge to the Tower. It was very warm sunny in the bridge. We stopped for a few minutes to watch the construction going on.

    We saw Dr. Frie-Lahr's clinic nurse, Cindy, in the elevator. She recognized and spoke to Missy. We arrived at the Bone Marrow Transplant Clinic reception desk about 1:00. I told them that we knew that we were very early, but that we would jut sit in the waiting room and read until time for Missy's 2:30 appointment. We got settled by the window and enjoyed the view for a few minutes. Before we even had a chance to start reading our books, Dr. Stuart's nurse, Bonnie came out to check on Missy and tell us that they already had her room ready at the hospital and that she would get transportation to take us over to the hospital. She felt Missy's head, concerned that she might have a fever, but Missy was fine. Maybe the wheelchair worried Bonnie. She didn't know about Missy's sore hamstrings from washing the dog. Plus, Missy hasn't been out and about in 6 weeks or so. She tires quickly right now.

    So, a man showed up to wheel Missy back over the the hospital. She got settled in her bed. Her nurse was Laura, along with a new graduate, Hittle. Dr. Megan Mulligan came it not long after Missy was settled. She gave us some good news. She had looked at Missy's CT scan and saw improvement. She said that she is not the expert, but that the new CT can looked much better than the old one.

    We talked with her about the c. dif. She wanted to make sure Missy received the rest of the medication for that while in the hospital. She also agreed that eating yogurt is helpful for c. dif.

    Dr. Smith's had really good news about the CT scan. The tumor has shrunk from 7 cm to 4 cm, due to the ESHAP. That indicates that the ESHAP had really made a difference, so they will go with another round of ESHAP, starting tomorrow. This will be a 5 day cycle again, so hopefully, she will be able to come home on Tuesday.

    I arrived home about 6:30.

    There is no medicine like hope. No incentive so great, and no tonic so powerful as expectation of something better tomorrow. ~ Orison Swett Marsden

    February 17, 2004

    Missy got out of the house today. Mama took her to the pet store. They figured that there wouldn't be very many people there and she really needed to get out a bit. She purchased some shampoo for her little dog and gave her a bath. The weather got a little iffy late this afternoon. It was thought that there might be some ice on the roads from the rain. After school activities were canceled so people were emailing me about the computer class. I decided to send the students my lecture on PowerPoint by email to view in case we has to leave early, and to hold class, leaving before it got dark. Everyone was satisfied with that. That meant that I was able to get home early and cook what Missy wanted to eat for supper. She had taken some shrimp out of the freezer and wanted them sautéed with onions and garlic and served over rice. She didn't eat much of it at first because she had eaten a can of Chef Boy Ar Dee ravioli not long before I arrived home. That was a pretty big meal in itself.

    February 16, 2004

    The Intruded nurse came today. I am now a PICC line dressing change graduate. We talked with her about Missy's c. dif problem. She agreed that eating lots of yogurt would be helpful. Yogurt with fruit on the bottom has lots of the good bacteria needed by the intestines. She suggested that Missy say that she is allergic to clydamicin when they ask about allergies. She told us that she was in the bone marrow transplant meeting on the Thursday that Missy was in ICU and had heard about how sick Missy was there. We didn't realize that an Intramed nurse attended those weekly meetings too.

    February 14, 2004

    Missy  has eaten more today than I have seen her eat in 2 or 3 days put together during the past month. She wanted cereal and fruit for breakfast, then a corn dog from a special place here in town (County Fair) that makes them up from scratch and cooks them when ordered, for lunch, then a snack of yogurt, and then I made chicken and dumplings for supper. She ate what I put on her plate and got a spoonful more of the dumplings after she ate all of that. We had them over rice with LeSuer peas on the side.

    It feels great to get excited over seeing her eat. I have been pestering her about food, asking her what she wants, getting things to keep in the nurse's station when she was in the hospital, having stuff here at home that I thought that she would eat, yet she would hardly eat.  Finally, I feel like she ate a meal tonight.

    February 13, 2004

    Today we still kept trying to find out when Missy's next appointment is. Mama called. I emailed the appointment lady, and I called again when I got home. Right after I got home, Tabetha, the appointment lady called and said that the appointment will be on February 19 and that Missy will be admitted on February 20th for more treatments. She said that Bonnie, Dr. Stuart's nurse would call later. Bonnie called a few minutes later and confirmed the times. Missy is to be in the main hospital for a CT scan at 11:00 on the 19th. She will see Dr. Smith at 2:30. She will be admitted that afternoon so that they may start another cycle of ESHAP early on Friday morning. Bonnie said that this is so that she doesn't have to be released from the hospital so late. (After that other cycle of ESHAP, she was released about 8:00 at night.)


    February 12, 2004

    Missy's discharge papers say that her next appointment is on February 20. There was no time listed, so I asked Mama to call to find out. They were to call back, but never did. Dr. Mulenburg called this morning to let Missy know to not take the Tequin prescription, that she was calling in a different one. One of the tests came back positive showing that the antibiotics had messed up the flora in Missy's intestines. She has something called c. dif. This must be what is causing the stomach pain and nausea.

    "Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow." Dorothy Thompson

    February 11, 2004 Home from the hospital, again.

    Missy came home today. She finally ate some food for them so that she could come home. She showed the doctor the awful breakfast that had been sent to her. (No one could identify what the food was. They really could not. Missy described it to me as a gray square of something. Could it have been French toast? Missy swears it was scrapple or some such thing. They were supposedly sending her soft food.) The doctor had the nurse order Missy cold cereal, fruit, and eggs and they watched her eat it. By then it was almost lunch time. Missy promised to eat lunch once  of the hospital, so they turned her loose. Her Granny was there and brought her on home. I didn't even know that she was coming home today until I got home from work. They stopped at a Pizza Hut and Granny went in and got a couple of personal pizzas to go. Missy ate pizza. That's after exiting on IV food and bits of fruit for almost a week.

    Courage is not the towering oak, that sees storms come and go. 
    It is the fragile blossom, that opens in the snow....Alice MacKenzie

    February 8, 2004

    Missy was moved to a regular room today. Her white count is 13,500. (Nuepogen shots.) She no longer has a fever. She hasn't eaten much and has been on nutrient via her PICC line for a couple of days. They still don't know what caused all of this. They will keep her here for a few more days, until she is eating normally.

    Who knows how long this delays the stem cell transplant again. She just wants to get it done.

    "The greatest part of our happiness depends on our dispositions, not our circumstances." Martha Washington

    February 7, 2004

    Missy's blood pressure is normal. They took her off the special medicine about 1:00 this morning. Now it has to stay normal for 24 hours on its own. The nurse told Missy that she is the most active patient in ICU and that she is like a monkey on the bed, moving around, getting herself on her own bedpan. They are used to inactive patients. 

    February 6, 2004

    Missy looks much better. They have given her some blood and platelets. Her blood pressure and pulse have also improved. Jamie got here before supper time.

    Nothing worth doing is completed in our lifetime,
    Therefore, we are saved by hope.
    Nothing true or beautiful or good makes complete sense in any immediate context of history;
    Therefore, we are saved by faith.
    Nothing we do, however virtuous, can be accomplished alone.
    Therefore, we are saved by love.
    No virtuous act is quite a virtuous from the standpoint of our friend or foe as from our own;
    Therefore, we are saved by the final form of love which is forgiveness.

    Reinhold Niebuhr

    February 5, 2004 ICU

    At about 4:00 this morning, they told me that they would most likely have to move Missy to ICU. Her blood pressure had dropped to something over 36. I don't recall the top number. The ICU resident came down to check her over. He told me that there were no beds in ICU available, but that there was someone scheduled to come out in the morning and they might have to do some shuffling. At about 5:20, they made the move. Her blood pressure had dropped to something over 29. They told me about a medication that they needed to get her on that could only be given in ICU because they would have to monitor her blood pressure every 10 minutes. I scrambled, got our things together and out of the door we flew to the 4th floor. They had someone lead me to the waiting room, promising to come and get me once she was settled. They never did and I was lost, with no one to ask until the ICU waiting room attendant came to work at 9:00.

    I called home and let everyone know what was going on. The ICU waiting room had a number of people sleeping on the floor and in chairs. The lights and TV were on. I just pulled the blanket that I had from the car over my head and hid. I was next to a phone and let Donna know the waiting room telephone number.

    I finally got to see Missy at about 10:00. She was hooked up to a machine that checked her blood pressure, pulse, and oxygen level every ten minutes. Her blood pressure was still up and her pulse was very high. 120 + beats per minute.

    I stayed in the room with her until they ran me out.

    My mother, brothers, and sister in law Brandi got there first. They let everyone visit, 2 at a time. Bruce and Chase got there later on, and they visited. (Missy told me later that everyone showing up scared her. She thought that she was a goner.) Her blood pressure improved. The doctor explained to me that her blood pressure would have to get the an average of 55 or higher and stay that way without the medicine for 24 hours in order for her to be moved back to a regular room.

    Missy said that Dr. Stuart came in and listened to her heartbeat. She says that he did not know that she knew that he was there. He didn't say anything, so she thinks that he figured that she was asleep. I wondered if she really saw him, because we were told that he was out of town. They had told us that she could hallucinate and to let them know if she did. I asked Dr. Smith if Dr. Stuart had been there and he said that Dr. Stuart had come by so she wasn't dreaming that.

    She did hallucinate some. She told me to take the Michael Jackson CD out of the CD player. I told her that I would. (There was no CD player and we don't have any Michael Jackson music.) Chip witnessed that one.  She also told me to tell the little man to get off the foot of her bed. I shooed him away and told her that he was gone. Bruce was there too and he told her that the little man probably had the wrong room.

    She told me later that there was a male nurse at some point during her stay in ICU. She said that he kept showing up at the end of her bed and she would tell him to go away. He must have been a night nurse, when we couldn't visit, because I didn't see a male nurse taking care of her in ICU.

    The Lord himself goes before you and will be with you; he will never leave you nor forsake you. 
    Do not be afraid; do not be discouraged. Deuteronomy 31:8

    February 4, 2004

    Missy was running a 102.6 temperature this morning. She was also throwing up. We of course went to the emergency room. We were in the Sumter emergency room all day. Blood tests showed Missy's white count to be 1. They posted a nuetropenic precautions sign on the door to her emergency room cubicle. After that, everyone who entered the room had to wear a mask. The doctors in Charleston wanted her brought by ambulance, and were to call back when they got a bed for her. Eventually, the emergency room doctor told me that if they didn't call by 4:00, that he would have her admitted to a room at Tuomey. About  3:30, when Charleston finally had a bed open. (They can't transfer until the sending hospital has a room number in the receiving hospital. We found out that that is the law.) With only 8 beds in the transplant unit, they are tight and someone had to go home before they could call to let Tuomey know the room number.

    The ambulance left about 4:00.  Mama and Missy's  cousin, Chase, stayed and saw her off. I went home to pack and take a shower, so  I was about an hour behind her getting there in the Jeep..

    She was still her joking, cute self when  got there. She said that she now knows how to get an ambulance driver to "put the pedal to the metal." All that you have to do is throw up in the ambulance. (In a bucket, but it had to ride all the way to Charleston too.)

    Her white count was 1, hemo 9, and platelets 26. That was in Sumter. Charleston is going to redo the tests. She has had nausea, upset tummy. She had a nuelasta shot on Thursday. They have always brought her white count up. This time it didn't work, or something else is going on.

    "Difficulties increase the nearer we get to the goal." Goethe

    January 30, 2004

    Missy is still very, very tired. Some nausea lingers, but not as much as yesterday. She ate more today than yesterday. She sort of picked at her meat. She is better able to handle eating carbs. (Even chicken is hard to digest.) She has dark circles under her eyes and still has to put forth a great deal of effort to go up the stairs.

    January 29, 2004

    Back to school. We found out that they canceled school yesterday because there were still many streets with downed trees and limbs, power lines too. It would have been dangerous for the buses and children. Some of our students still don't have electricity back on in their homes. 

    Mama took Missy to Dr. Clowney's office for the neulasta shot today at 2:30. She is exhausted from the trip. She says that she has never felt so tired so many days after chemo.

    Missy's next appointment is on February 12. That is on a Thursday. I emailed the appointment person at Hollings Cancer Center to make sure, because the appointments have always been on Tuesdays before because that is when Dr. Stuart's clinic day it. She emailed me back, letting me know that the appointment is on Thursday. They are doing a clinic together on Thursdays.

    She still has some nausea. Either ESHAP is harder to get over or this chemo cycle is going to be harder to get over  because of having to get over pneumonia first.

    January 28, 2004

    No school again today. That was great. It gave me a chance to stay at home all day with Missy. She is very, very tired. Going up the stairs is a chore. She says that each trip is easier. She ate small meals today and a good supper. Bruce went out and picked up an Arby's cherry turnover when she said that she would like some sort of pie.

    An Intramed Plus nurse, (Phyliss) came today to show me how to change the dressing on Missy's PICC line catheter and how to flush it with saline and heparin. It has to be flushed every day. The dressing has to be changed once a week, so the nurse will come back on next Wednesday at 4:00 to lead me through that one more time. The flushing part is pretty easy to do.

    January 27, 2004 Last day of ESHAP - Home from the hospital.

    Missy is home. They called from MUSC about lunch time and said that she would be released between 8 and 9 PM. We were sort of frozen in here in Sumter. There was a big ice storm. No school today or yesterday. We waited a bit for it the thaw and then headed for Charleston about 2:30. The roads were free of ice. There were some downed limbs on some streets near our house, but I drove around then. On the return trip, they were gone. Missy's next doctor's appointment in Charleston is Feb. 12th. We'll find out then about the transplant rescheduling then. She is pretty weak. She had a tough time climbing the stairs to her upstairs bedroom last night, but she made it. She has been in bed mostly for over 2 weeks, with just trips to the bathroom (one downstairs visit with me on the 19th but that was it)  plus just finished 5 days of chemo last night at 7:30. She is doing well from that though. No visible nausea today. She has Zofran which is really good stuff. 

    She wanted Chinese food to eat before she was released. (She did not want that last hospital food meal.) Shrimp and chinese veggies was the order. So, Mama and I went over to James Island to get  while the chemo finished up. It took us about an hour what with walking down to the parking garage, getting to a bank machine, ordering and waiting for the food, and Mama and me getting our food from Sonic. Anyway, when we walked in with the food, she opened it, took one bite, and decided that she couldn't eat it, and wanted  take it home to eat.  (The smell overwhelmed her.) 

    She was released about 15 minutes later and we took off for Sumter, hoping to get across the Lake Marion Bridge before the temperature fell below freezing again. Well, after about 25 miles, miles Missy,  wanted to go to the bathroom. There are no places to stop for one stretch there on I - 26. Between I-26 and I-95, after Summerville, there is one exit with a bathroom. So, she had to hold it until we got there. 

    We finally pulled off at Harleyville. Not a wonderful pit stop, with a bar called the Finishing Mill connected to the Shell Station. But, that was the only choice. So, she went to the bathroom. We still can't figure out why there is a bed in the bathroom there. We decided that we just won't let our minds go there. 

    When she got back into into the Jeep, Missy told me that the Chinese food smell was starting to get to her even though I had wrapped it up tight in a plastic bag So I put it in a Patient Belongings bag and tied it to the luggage rack of my Jeep Cherokee. I tied it really well. I even used some of the extra stretchy stuff that they gave us for Missy's arm to hold the catheter lumens, to keep them from dangling. It looks like while fishnet stocking. That was actually the first time that I have ever used the luggage rack. Picture this small, package on the top of the Jeep. White Chinese food bag, inside of white plastic sack, inside of clear, patient belongings bag, tied to the roof with white stretchy stuff and the strings from the patient belongings bag.

    It was 32 degrees outside, colder than a fridge, so I figured that the food would be fine. When I got back in the Jeep from tying on the Chinese, I said to Missy and Mama, "Wonder how many people will wave at us, telling us something is on top of the car before we get out of the parking lot?"

    Before we could get out of the parking, 3 people tried to wave us down. We just giggled and giggled. It was funny. With the first, I just nodded and smiled through the window, pointed to the roof like he was and  said, "I know" and he figured it out. Then with the next two, I told Mama and Missy to just smile and wave real big. We just kept on giggling. I told them as we drove off that they should have rolled the windows down and hollered out, "Ya'll folks sure are friendly here in Harleyville." Today, we fed the stuff to the Dalmatian. The food had soaked through the paper carton because I had left it tied to top of the Jeep all night. Missy didn't get to eat it, but we had more than $5 in laughs off of that little order of chinese food.

    "You gotta kick the darkness 'till it bleeds daylight."    U2

    January 25, 2004 ESHAP day 3

    Dr. Stuart is still pleased with Missy's arm. Looks great. She asked him how long these setbacks have delayed the transplant. He said about 4 weeks.

    He said that she will probably get to come home late Tuesday or on Wednesday. Missy is ready to come home.

    Mostly Missy just wants to sleep. She keeps the lights out and the TV low if she has any sound at all. Dr. Stuart says that it is easier to deal with nausea if there aren't bright lights and it's quiet.

    Missy ate some of her hospital lunch today. Her only favored meal here: fried chicken, rice with tomatoes and okra to pour over the top, and congealed salad. (I mean favored. It's sort of hard to have a favorite when you don't care for any of the food except for that one meal. The menu is the same week after week.)

    I ordered her a baked potato for supper.

    The weather started looking bad, ice and rain, so we decided to head on back to Sumter about 2:00. Missy's nurse today and tomorrow is Sarah. She is always so good to Missy, anticipating what she needs before she asked for it. Sarah is great.

    "I believe in angels, the kind Heaven sends. I am surrounded by angels, but others call them my doctors, nurses, and aides." Missy

    January 24, 2004 ESHAP day 2

    Dr. Stuart is very pleased with how the wound from where the PICC line was removed from Missy's left arm looks. He said that it is healing up very well.

    Missy has some pain in her side, on the left. Dr. Stuart thinks that it is from the pneumonia drying up.

    Missy ate a very good super tonight. Bruce and I want and picked up some chicken for her, with mashed potatoes, and cole slaw from Church's. Before we went there, we had checked out the seafood restaurant where the She Crab soup came from, but it was busy, busy, busy. Plus the traffic on James Island was awful. We picked up a 1/2 gallon jug of sweet tea for Missy and some banana pudding. Earlier today, we had gone out and gotten some Atlanta Bread Company loaf of soup for her lunch and picked up some more canned teas and small cartons of Tropicana orange juice for the nurses to keep in the fridge for her. The oj and tea here leave much to be desired. She is pretty sick of hospital food too.

    Bruce and I checked into the nearby Comfort Inn. You know, sometimes, we complain about how far it is to Charleston. If it wasn't so far (about 100 miles) we could be with Missy everyday. Well, we should just quit our fussing. A girl about Missy's age is in the room across the hall. She is from Bulgaria and is here for treatment. Look at how far she had to come. Her family is here and I'm sure that they have had to rent a place. Looks like a father, mother, brother, and maybe an aunt. She is a 5th year law student. She still has her hair, very long hair, so I wonder if she has had any treatments at all. Maybe she is relapsed. Probably leukemia. Missy seems to be the only Hodgkin's patient in the unit. (I read the big board with room numbers, names, and who is the nurse, and whether they are oncology or hematology. They list Hodgkin's as oncology, even though it really is hematology.)

    January 23, 2004 ESHAP day 1 of 5

    The new PICC catheter is in Missy's right arm in the same spot the one in her left arm was. They started the cycle of ESHAP chemo treatments today. It will take 5 in hospital days. Today is Missy's Uncle Timmie's birthday. His present is at home in the closet. 

    Missy had some She Crab soup from a restaurant on James Island for supper tonight. Her dad brought it too her. She said that it was very, very good.


    Solu-Medrol(= Methylprednisone)
    High-dose Ara-C (= Cytarabine)
    Platinum  (= Cisplatin)

    Etoposide ( e-toe-POE-side) belongs to the group of medicines known as antineoplastic agents. Etoposide often causes nausea, vomiting, and loss of appetite, which may be severe. It also causes tiredness and weakness.

    Solu-Medrol is a steriod. Possible side effects are depression, headache, hypertension, edema, and mood swings. It causes facial "mooning" (also known as "chipmunk cheeks"). It's good for decreasing inflamation and relieving pain.

    Ara-C is also know as Cytosine, Arabinoside,  or Cytarabine. Ara-C interferes with the multiplication of cancer cells and slows or stops their growth and spread in the body. Ara-C usually does not cause nausea or vomiting. It does cause decreased blood counts (Bone Marrow Depression): Bone marrow produces blood cells. Ara-C can lower the number of white blood cells which guard against infections and platelets which prevent bleeding. Ara-C can cause sores in the mouth (stomatitis): Patients experience this in varying degrees with some having fever-blister like sores. 

    Cisplatin can cause nausea and vomiting. Plenty of fluids will be given with cisplatin to protect the kidneys. Ringing in the ears may be experienced. Temporary taste alteration may occurr.

    March on my soul, be strong. Judges 5:21

    January 22, 2004

    Missy will be in the hospital longer than they said on Monday. She has had another set back. The PICC catheter that was placed in her arm on Friday for chemo has become infected. They took it out this morning  (in the room). They will be putting in another one later today (in a different spot). They were to start the chemo yesterday, but didn't due to the catheter. I didn't find out until about 6:30 P.M. yesterday.

    Her father is with her, staying until I go back for the weekend.

    She won't be getting out on Monday as planned. We don't know how long this will extend her stay and delay the transplant.

    "Love the moment. Flowers grow out of dark moments. Therefore, each moment is vital. It affects the whole. Life is a succession of such moments and to live each, is to succeed." Corita Kent

    January 21, 2004

    They did another bronchoscopy on Missy yesterday. She was really upset about it because they had promised that if her fever did not spike again over the weekend that they would not do it. It didn't but her main doctor changed his mind. (The attending had told her that they wouldn't do it and had to come back and tell her that they would do it after all. He had scheduled it for Monday, just in case, came in told her they wouldn't do it, to eat breakfast, then came back at 12:00 noon and said that they would do it Tuesday.) 

    Anyway, the bronch looked good, no closed airways, no visible signs of infection. They took some washes to see if they can determine what caused the pneumonia, but admitted that since she has been on 3 antibiotics for a week that nothing may show up at all. She was so upset because she came to during the last bronch and they had to hold her down. Didn't happen this time. They were aware of the last time. I kept telling all who would listen.  Also, they used a different pulmonary doctor. Plus, Missy's aunt has a friend that works back there and he made everyone aware of the Missy is hard to put under with twilight sleep deal. 

    They gave her a happy pill before the procedure, and she was ok with it.

    So, she will stay there for a chemo that if she hadn't gotten the pneumonia, she would not have had to have. She would have been having the transplant chemo and the transplant by now. Because she has not had  a chemo in 3 weeks, they have to do one and it needs to be an in hospital one due to just getting over being so sick. She probably will not get out until Monday. Longest stay yet, 2 weeks plus in a hospital.

    They need her to get her strength back up to be ready for the high dose and transplant, so it will be on over in February now we think. They have to wait and see. They just say things like get this chemo done, get her counts back up from that, get her back on track for the transplant........

    Courage is the price that Life exacts for granting peace.- Amelia Earhart

    January 19, 2004 

    This morning, about 9:30, Dr. Brescia, Dr. Smith, and the entourage of medical students (about 10 people in all) came into Missy's room. Dr. Brescia said that since she was doing so well, that the bronchoscopy wouldn't be done and that they would start the ESHAP chemo today. They asked if she had ever had a Procrit shot. (She has had one.) They plan to give her some Procrit shots. Her white count is 2.9, but Dr. Brescia says that her nuetrophil levels are good, so her white count is within acceptable range.

    At noon, Dr. Brescia and Dr. Smith came back. The plan had changed. Dr. Stuart decided that he wants the brochoscopy done after all. It will be done tomorrow morning. They had promised Missy that if her fever didn't spike over the weekend and if her breathing was enough better, they wouldn't order the brochoscopy. She is upset. Dr. Brescia explained that Dr. Stuart is concerned because she has had repeated bouts of pneumonia and wants pulmonary to see if they can see what is causing it, maybe even to put in a stint to open up an airway if needed. Dr. Brescia promised that the waking up during the procedure like the last brochoscopy would not happen again. He says that everyone is aware of that experience. He said that having the Hickman catheter will make the difference. The medicine for the procedure will go directly into the catheter. Before, it infiltrated, and she came up out of it during the procedure and fought because she felt that she was drowning. (The were squirting water down in her lung to get washes.)

    I called Lynn, the school secretary to let her know that I am staying another day to be here with Missy for the bronchoscopy. Dr. Smith and Brescia feel that I will be able to get home to Sumter in time to teach the grad class tomorrow night at 4:00. (I will need to leave by 1:30 or 2:00 at the latest.)

    Missy got dressed and walked down to the cafeteria area with me.  On the way she saw the view from the 8th floor waiting room for the first time. She ordered a hot dog and curly fries from the Hotdog factory. They really piled the chili, relish, and slaw on her dog. Then we came back upstairs so that she could eat. After her hot dog, she took a bath, while Carmen changed her bed. Then she napped for a few hours, while I graded papers, recording the grades on the gradebook on my laptop. (I've got 2 classes done. Seems like I'd get more done, but there is a lot going on. I make trips to the parking garage to get things out of the Jeep. Missy sent me for M and Ms after she woke up from her nap.)

    "God has put something noble and good into every heart his hand has created. So while living on earth we must always remember to learn from yesterday, live for today, and hope for tomorrow because time will only show what has mattered throughout our journey." --Melanie Klein 

    January 18, 2004

    Missy had a pretty restful night, except for the interruptions from them starting antibiotics, checking on her, etc. She did have some nausea at one point because the nurse didn't put the nausea medication in the IV before giving her the antibiotics. (The day nurse made sure to do that, and Missy didn't have nausea then. We'll have to make sure that the night nurse puts the nausea meds in before staring the antibiotics. When the night nurse came back once I called her about the nausea, she said that those antibiotic can cause nausea on an empty stomach.)

    The resident checked on Missy about 7:00. We didn't realize that the sun was up because this west side of the building corner room is dark in the mornings and it was raining this morning.

    Dr. Brescia came in about 8:30. He is still pleased with how she is doing. He checked to make sure that what he coughs up has no blood. (It doesn't.) He said that a cycle of ESHAP takes 4 days and that if they get to start it on Monday, that the soonest that she would get out of the hospital would be Friday.

    I slept on the recliner in Missy's room again last night. The folks from Friday had told me that I could take a shower in Missy's bathroom, so I did last night, put on flannel PJs and was much more comfy than sleeping in my clothes.

    Mama and Chase (Missy's cousin) came to visit today. Mama stayed with Missy while Chase and I went out to get Missy some canned tea. Just before we were going to leave, the C.A. Carmen, happened to be in the room when we were talking about Missy's pjs needing to be washed. I thought that I would have to find a laundry mat, but Carmen told me about a washer and dryer that we could use. It's over in the children's' section of the hospital, on the 7th floor. After we came back from getting the tea, Chase and I took Missy's things over and I put them in the washer. Thank goodness that I have learned my way around this place. This medical complex is huge. Back in October, I would never have been able to find my way, but having been here so many times now, I knew what Carmen was talking about when she said the elevators past the aquariums. We have to go that way if we go back and forth to where Missy's doctor's office is in the Rutledge Tower.

    I went into the gift shop today. I got Missy a Medical University of South Carolina T-shirt and a GET WELL SOON balloon with a beach chair facing the ocean. 

    Missy napped during the afternoon. The nausea medicine that they are giving her with the antibiotics makes her drowsy. I called another Hodgkin's patient's mother. They live in West Virginia. She had sent me her number when she found out that Missy was in the hospital sick. We had a long talk. (Thank goodness for free long distance on my cell phone on the weekends.) It felt good to talk with someone who knows the "lingo" without having to explain it. Also, she feels like I do about hearing that Hodgkin's is somehow a "good" cancer, because it's so curable. Folks don't know how bad the treatments are. The chemo, radiation, and now for Missy, more chemo and next  a stem cell transplant. Some cancers can be cut out or they are treated with much less chemo. Everybody needs to read Lance Armstrong's book. (Thanks, Nancy. We read it and need to return it to you.) What he had is treated sort of like Hodgkin's. He had some of the same chemos that Missy has had or will have. 

    Missy's fever has stayed down, so they will probably start the ESHAP chemo tomorrow.

    "Courage is fear that has said its prayers." - Dorothy Bernard

    January 17, 2004

    I slept on the recliner in Missy's room last night. She had a pretty restful night. She woke up short of breath once during the night, and got a bit scared, but by the time the nurse got the resident to check on her, she was relaxed again and fine. They are giving her Rocephin (antibiotic) alternating with the Clindomycin. The PICC line is working fine. She had a 100 degree temperature this morning, but the medical folks weren't concerned. Dr. Brescia came by a little before 9:00 this morning. He said that they are pleased with how she is doing now that the pneumonia is so much improved. They do not plan to get pulmonary involved unless her fever spikes again and her breathing worsens. He is pleased with how her lung sounds. They really don't want to do a pulmonary procedure if they don't have to because of her blood clotting issue. The plan is still to see how she does over the weekend and then see about giving her the ESHAP chemo the first of the week. Her white count is 2.8 (2,800). It was 6 (6,000) when she first checked into the hospital. Dr. Brescia says that he is not sure why it dropped like that but it is possible that with all of the chemo treatments that she has had, her marrow is  not working quite as well. He asked her if he had been out of the room. Missy joked and said, "Only to the mall last night." Dr. Brescia noted that she had eaten her breakfast and said that was a good sign. (She had me order Corn Pops with milk, hot tea, and fruit for her. She had the Tropicana juice than her Uncle Stan had brought. She doesn't care for the oj that comes with the hospital food.) At 9:30, her temperature was at 99.6.

    Missy had chicken noodle soup for lunch. For supper she wanted some Atlanta Bread Company, Loaf of Soup. There were some other things that she wanted from the store, so I headed out about 3:30 to pick some things up. I went to the Harris Teeter on East Bay Street. I had to sign up for a Harris Teeter VIC card to get stuff on sale. I haven't shopped at a Harris Teeter since the one at Litchfield Beach changed into a Bilo so my phone number wouldn't work anymore.  I got some more Tropicana oj, in cartons this time and a few other things. Traffic was very bad on Market Street and I couldn't find any place to park in order to get into the Atlanta Bread Company. The only thing that I could figure to do was go back and park at Harris Teeter and walk up East Bay to Market Street to get the soup. So, that is what I did. It gave me some exercise. I had my Harris Teeter receipt in my pocket and $35 of grocery items in the Jeep, in case anyone got upset about me parking there and walking 4 blocks away and back. (Parking is at a great premium in Charleston due to the tourism and there are signs at the grocery store about parking being for customers only.)

    When I got back with the loaf of soup, Missy was snoozing. The nausea meds make her sleepy. I took my paperback and went down to the waiting room to let her nap. When I returned to her room, her super tray had come. I got the nurse to warm the soup up, it was lukewarm by then, not hot. I ate her supper tray and she had the loaf of soup. She had Southwestern chicken soup and said that it was pretty good. Both the nurse and the C.A. wanted to know where it had come from and said that they had never been to the Atlanta Bread Company and should try it out. Minerva, the C.A. wanted to know if I had picked up any extra menus. I had two, so Missy gave her one. Minerva said that this would be a new place for them to order from.

    Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says...I'll try again tommorrow. - unknown

    January 16, 2004

    A PICC line with 2 lumens was installed in Missy's right arm today. It's on the inside of her arm,  just above her elbow. 
    The twilight sleep, or whatever it was, worked this time. She said that it was not a bad experience. She was down in inerventional radiology a couple of hours, getting back to her room about 5:30 P.M., just in time for supper, but she didn't want the hospital food. The nurse checked the catheter right after they got her settled. She was able to get some blood flow out of it. She said that they would wait about 1/2 an hour before they actually use it. After about 30 minutes, the nurse was able to hook up the antibiotics (Clyndomycin) and saline to the PICT line.  (This meant that they were able to remove the two IV lines from her hand and arm.) They gave her something for nausea too, because the antibiotics have been making her queasy. They are also giving her Tequin by mouth. The is back on Lovenox injections, which they let her give to herself. She is getting Tylenol and pain medications. (She doesn't want the pain meds, afraid that it will be hard to stop taking them.) Her cough is much, much better. They are giving her a cough medication when they bring in the other pills. She has not spiked a fever today. She is also using a bit of oxygen, if she feels short of breath. The plan is to watch her through the weekend and if she doesn't spike a fever again, to do start a cycle of ESHAP chemo on Monday. This is a different pre transplant chemo regimen from the ICE that she has had 2 cycles of. She wouldn't have had to have another in hospital chemo like this if the pneumonia hadn't put things behind.

    Missy wanted Church's Fried Chicken for her supper. The C.A. told me that the one on Meeting Street is the nearest. (We had been to the one over on James Island before.) I had a sort of adventure at the Church's. After I had ordered, paid, and was waiting for Missy's food, a middle aged man started yelling at a younger man about breaking in line. I didn't notice anyone breaking in line. The younger man just sort of ignored the other man, but the man kept yelling. He wanted to fight. Goodness, it felt like a fight about to happen in my classroom, and I needed to buzz for Dr. Coon. I almost felt the urge to say, "Now lets get along. You go over there, and you go over on the other side of the room and everyone calm down." That's what I always do at school if kids act like they want to fight in my room. Sometimes it works, sometimes not. Anyway, this elderly man got up from eating and got between them. He said stuff like, "Everyone just calm down. No one wants to fight. Everyone just wants to eat chicken." Well, somehow mentioning the chicken set the loud one off again. He started hollering again. So, the manager distracted him asking him what did he want to eat and asking him to please settle down. They got his food right away and got him out of there. Going out the door he was still hollering at that young man, who to his credit, never said a word, just looked stunned at the ruckus. I don't think that I will go to that Church's again. I'll go to James Island.

    January 15, 2004

    When I called Missy's room this morning during my planning period, Missy's Aunt Kim answered the phone. She said that Missy's color was much better.  Luckily Kim was with Missy when rounds were made. (She works in research at MUSC and is able to pop over to Missy's room at times.) Dr Brescia is the attending physician this month. ) The illness appears to be some sort of pneumonia.

    Dr. Brescia is pleased with Missy's progress and talked with her about the possibility of  having a pulmonary procedure done to help open her airways and maybe putting in a drain tube. (This must be why they aren't giving her any more coumadin right now.)  He wasn't sure today if that is what he wants to do because of her positive response thus far to the antibiotic treatments but is going to set things up for the pulmonary procedure, just in case.  Kim said that she reminded him about Missy's horrible experience  with a previous  pulmonary procedure and she asked if additional measures could be taken to insure that waking up during a procedure would not happen again.  He assured her that additional steps would be taken.  She also asked him that her friend, Dr. Brad Kilpatrick, (pulmonology) be consulted.  She will see Brad tonight at Scout meeting when she takes her boys, Missy's cousins, and  will let him know about the possibility of Missy coming into pulmonary for a procedure and see if he can make sure that things are different.

    Dr Brescia also mentioned doing another chemo treatment while Missy is hospitalized if things look good enough. They also discussed putting in a new port for chemo.  Kim said that she reminded him of Missy's  clotting issues with the last port  and he said that due to the toxicity of the chemo that she would need a port. (This would be another reason for no Coumadin at this point.) Dr. Stuart had let us know on December 30th that she would have to have a port for the high dose chemo. It just cannot be put in via a regular vein. He assured us that the line for this next port would smaller than the one they put in for the stem cell collection. This means that it would not be as likely to irritate and cause a clotting problem.

    I had called the nurse's station this morning at 6:30, before leaving for work, but wasn't able to talk with the nurse. He was with a patient and I imagine that he didn't get to call me back, because the nursing shift changed, and I went to work. I left my cell number, but had to turn it off once the bell for the students to come into the building sounded.

    Mama called the nurse's station later in the morning and ended up speaking to someone on the 1st shift, but we think that she was giving Mama old info, telling her about the fever having gone to over 102 degrees, etc. She probably didn't realize that Mama had been checking on Missy all along. She also told Mama about the possibility of a pulmonary procedure. 

    "We can't change yesterday. We can only make the most of today, and look with hope toward tomorrow." - unknown

    January 14, 2004

    I spoke with the nurse, Julie, again this morning at 6:30. (They work 12 1/2 hour shifts.) She said that Missy had slept through the night and was sleeping soundly at the moment. She thought that it would be a good idea for me to call her about 9 or so, during my planning time. I called and Missy said that the food isn't so great. (Complaining about the food is a good sign. She must want to eat.)

    I called again at 9:00 P.M. and spoke with the 2nd shift nurse, Jason. He said that Missy was in pretty good spirits. He had never taken care of her before and said that he didn't know her very well, but she seemed in good spirits. They are treating her with antibiotics, fluids, and she had some blood. They have taken her off the coumadin for now.

    January 13, 2004

    Whenever I call Missy, I always seem to wake her up, so I decided to start calling the nurse's station to get them to check to see if she is asleep or not. I spoke with Missy's nurse, Julie about 9:00 P.M. She said that they had added Rocephin to the other two antibiotics that Missy is getting and that she seemed to be responding. That's the same one that Tuomey Emergency gave her on Sunday. She said that they had been able to get the fever down and that she was up in a chair and eating soup right then. Julie told me that she would go down to Missy's room to make sure that she could reach the phone, to call back in a few minutes, ringing Missy's  room. I did and spoke with Missy. She sounded tired, but seemed in pretty good sprits. They gave her some blood today. That should help with her counts.

    January 12, 2004

    When I checked Missy's temperature this morning, it was 101.5. Right away, I called Charleston. First, I talked to Jill, one of the nurses, and she told me to call the paging operator and ask for the hematology fellow on call. Dr. Jamey Smith called me back about 7:00, asked me about her condition, about the emergency room visit, etc. He said that she would need to be admitted to the MUSC hospital and that he would call back after talking to Dr. Stuart. I had to get to school, but Bruce stayed and took care of things. My mother came over to get Missy packed. By 10:30, the arrangements for admission had been made, so Bruce left to take Missy to Charleston. She was admitted by 12:40 and once again on 8 West. By 1:25, they were taking her down for a nasal CT scan. They did say that it appeared to be a sinus infection. They have her on IV antibiotics.

    Missy is very disappointed. Tomorrow was to have been hopefully, her last clinic visit before the high dose treatment and transplant. Now that is delayed.

    'Come to the edge,' he said. 
    They said, 'We are afraid.'
    'Come to the edge,' he said.
     They came. 
     He pushed them...
     And they flew.

    Peter McWilliams

    January 11, 2004

    We made a trip to the local emergency room this morning. Missy's temperature was 100.4 when we checked it. She said that her chest hurt and head was really hurting. She felt like she has a sinus infection. We got there about 10:00 and this time were taken straight back into the triage room. Thank goodness for someone with some sense at the check in desk. I was ready to tell them that if she had to wait, that we would go home to wait, for them to call when they were ready for us. (I was  not going to let Missy sit in some waiting room with a bunch of sick people.) When the checked Missy's temperature there, it was 100.5. We saw a different emergency room doctor. He ordered an x-ray and ordered IV antibiotics. It was Rocephin this time. He didn't order any fluids. They gave her some Tylenol and a shot for pain and said to call her Charleston doctor tomorrow. I had offered him the numbers to call, but he didn't feel that he needed to talk with them. He said that the x-ray didn't look any different from October or December, and he couldn't see any pneumonia, so he couldn't tell what was wrong. Missy rested the rest of the day, coming down to have some soup for supper. 

    The only courage that matters is the kind that gets you from one moment to the next....Mingnon McLaughlin.