Missy's Story

Her Progress - Her Triumphs
Via her mother's journal 

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

    April 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

    April 30, 2004 Day -4

    Missy is still getting rid of lots of fluids. They have lowered the oxygen level again. This will continue to help get the CO 2 out of her bloodstream. Her CO 2 levels are improving.

    We got her up today. She hadn't been out of bed for a couple of days. She had a bath. Betsy got her bed changed really fast, before she got back into bed. Once back in bed, she took a long nap.

    Michelle got the chemo going about 11:30 today. Once again, two 15 mL syringes of etoposide, administered using the pump borrowed from the Children's Hospital.

    It's really great that Missy has not had any more nausea than she has had. I guess that she had her share when she was fighting that bacterial infection.

    I asked Cathy, the charge nurse, what we could do to get more calories and protein into Missy. She is not eating the food, but drinking milk with Carnation, eating fruit, a little peanut butter and jelly sandwich, and not much else. She called the dietitian who came up with a plan. She is having health shakes sent up on Missy's trays. She will have the pharmacy send in  can of protein powder. The powder can be mixed with Missy's milk and Carnation, with apple sauce, with mashed potatoes. Missy can have 3 - 5 scoops per day to help build her up.

    Bonnie came to visit Missy again. She brought her a neck cushion and a lap desk that a drug company left at the day clinic over in the Rutledge Tower. It's always a pleasure to see Bonnie.

    Jennifer was Missy's night nurse. We thought that it was Halloween at one point. The machine monitoring her oxygen saturation and pulse rate showed that her pulse rate was jumping to 250 and above. Missy was calmly sitting in bed drinking juice. The numbers would start climbing: 118 to 135 to 160 to 190 to 250 or more. Then they would go back down. Then they jumped to 250 and stayed there. The machine was going wild, while Missy calmly drank juice. Jennifer checked her pulse by hand and got 120. I did too. Then the resident came in and got 120 beats per minute. Just to play it safe, Angela (the nursing assistant) brought an EKG machine in. It showed 123 beats per minutes. So, Jennifer brought in another machine. It started out fine, but ended up doing exactly the same thing. So, then Jennifer got a new line to put on Missy's finger, thinking that the one that she had was worn out. Well, the same thing started happening. I asked Missy if she was going to start bending spoons without touching them or levitating off of the bed next. So, Jennifer brought in another machine, and it did the same thing. She gave up then, stuck so little electrode hookups on Missy's chest and fixed her up with a telemetry device that is monitored on the 9th floor. We never heard from them all night, so her readings were fine. The only thing that I noticed that was different, was that both of Missy's hands were cold when all of them was happening. She was warm everywhere else.

    Bruce, keeping watch.

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

    April 29, 2004 Day -5

    Missy has eliminated a lot of fluid, 2 Liters +. Her breathing is better. They have been able to turn the oxygen down some. There is not as much fluid in her lungs. She is not having any more fevers. Her temperature is running a little below normal. Since she had been able to get rid of the fluids, the 3rd day of chemo will be today. The etoposide will be administered without any dilution. They explained that this is done in other institutions, they have just never given it that way here. Michelle is Missy's nurse again today. She told me that they had to borrow the pump that they are going to use from the Children's Hospital. It's very small. The chemo came in 2 small 15 mL syringes. They were administered over 2 hours each beginning at 3:00 in the afternoon.

    Today, Missy ate a peanut butter sandwich (no crust.), a Carnation Instant Breakfast in milk, and a fruit on the bottom yogurt. She is drinking a lot of cranberry/peach juice.

    She has had some nausea, but not as much as one would think that she would have.

    Bonnie, Dr. Stuart's nurse, came to visit Missy today. Missy was sleeping. Bonnie plans to find Missy a neck cushion, because she is not able to lie flat in bed.

    Sarah was Missy's nurse tonight. She is as quiet as a mouse when she comes in. I hardly know that she is in the room when she comes in the room. Missy needed a unit of blood tonight. Her hemoglobin was 8.9. Anything below 9.0 and they give blood.

    It was a good night. It's always a good night when the night resident doesn't have to be called to the room.

    Missy is not having the high temperatures anymore. The chemo that she has already had, has helped with that.

    The famous pump that was borrowed from the Children's Hospital.

    Michelle, hooking it all up.

    "There's something wonderfully rewarding in being part of an effort that does make a difference." - Brian O'Connell

    April 28, 2004 Day -5 (then it became another Day -6, due to chemo delay)

    Donna called me at 7:00 before I went to work. She said that Missy had a bad night. Her nurse, Jenny, was in the room with her off and on all night. The resident had to come in and check on her a good bit. I told her that I would come right back as soon as school let out at 2:05 today.

    At about 10:00, Mama called me in my classroom and said that Donna had called that the charge nurse wanted to know when I was coming back. There is the possibility that Missy might need to be put on a ventilator. There is fluid building up in her only good lung. Her blood gases are not good. I rushed back to Charleston and was there by 11:30. (I had everything in the car.) Thank goodness, I have made the trip enough times, so that I know where the radar hides out.

    Timmie and Donna met me in the parking garage. I'm so glad that they were both there.

    Dr. Frie-Lahr came back over from her office at about 12:30 to talk to us about what is going on. They are going to eliminate all fluids possible from Missy's IV. They are removing the TPN and regular fluids. She is getting fluids when she gets antibiotics. They are going to give her Lasix every 3 hours and add a protein, Albumin. Missy's blood work shows that she does not have any protein in her blood stream. This is a problem because without protein the tissues will keep the fluids soaked up like a sponge, and it doesn't draw into the bloodstream to filter through the kidneys. Missy is on oxygen to her her with her breathing.

    Dr. Frie-Lahr doesn't think that a ventilator would help. She feels that with only one good lung, Missy would not come off of a ventilator. She feels that the best plan is to delay today's chemo, due to the fluids. They will work on getting the fluids out of Missy's body and hope that the chemo can be resumed tomorrow. This would move the transplant to May 4, one day later than it had been planned. They will also look into giving the Etoposide without diluting it. 

    I was so tense and uptight, that I had to disappear for a little while and ended up crying in the hallway. Cathy, the charge nurse was out there, and well, she took charge:) I'm glad that she was out there.

    Missy's nurse today is Michelle. She is always great with her. Gail took care of her during the night. She is wonderful too.

    We will pray that a great deal of fluids are eliminated.

    Bruce came to stay until at least Sunday. We are both in the room with Missy at night.

    Our favorite entrance into the hospital on Jonathan Lucas Street.
    This is the side/back entrance, viewed from the parking garage.

    April 27, 2004 Day -6

    Last night, we got moved to the bigger room. It's wonderful. Once they told me that the room had been cleaned and that we would be able to move, I started moving our things. It took me from 9:00 until about 10:00 P.M. Missy was sleeping. I told her before I started moving our things what I was doing, but she didn't really wake up until the "crew" came in to move her on her bed. Then she wanted to know what was going on. She had forgotten that we were moving to another room.

    The chemo was started about 11:30 today. It another round of cytoxin. I'm heading back to Sumter to teach the last night of the computer class for the semester. Missy's Granny Opal will stay with her until her Aunt Donna (my brother, Timmie's wife) gets here to stay with her for the night.

    Moving to the "Presidential Suite"
    The "new" room is about 50% larger.
    The pink basin was for "just in case."

    "It is our attitude at the beginning of a difficult undertaking which, more than anything else, will determine its outcome." William James 

    April 26, 2004 Day -7 The Transplant Process Begins

    "I did the thing I feared the most. Excuse me while I cheer. 
    Now here I stand a stronger soul. And all I've lost is fear." - Unknown

    Jill, getting the chemo ready and then hanging  the chemo.
    The jar is covered with 2 dark bags, because cytoxin is affected by light.

    Today, the transplant process actually began. The night was rough. Theresa came in every two hours to get Missy up to go to the rest room. 10:00 PM, 12:00 AM, 2:00 AM, 4:00 AM, 6:00 AM. When the shift changed at 7:00 Jill and Hitle were once again Missy's day nurses. Missy is still retaining some fluids. When Dr. Frei-Lhar came in, she decided that it would be a good idea to use a catheter. That way, Missy won't have to get up and down every 2 hours until 10:00 tomorrow. (The up and down every two hours would have been a 36 hours stretch.) Her urine is very concentrated, even with the fluids. Tests show that she doesn't have much protein in her output. They are giving her some medicine to help with that and are going to give her some more Lasix. The albumin (? spelling) will draw the fluid from where it is collecting in her abdomen and arms into the blood vessels where it can be eliminated.

    Jill gave Missy three pre-chemo Zofran tablets  (for nausea) about 10:00. The first chemo was started at 10:30. It was set for two hours. This was the Cytoxin.

    Before lunch time, Hitle fixed Missy up with the catheter. It worked great right off. Missy woke up at times during the day, saying that she should get up and go to the rest room. She forgot that the catheter was there.

    After lunch, the 2nd chemo (Carmustine) was started was set for 4 hours. This was the one with the alcohol content that Missy was teased about. The nurses told her that she would get tipsy. I believe that she did. We had to change her night gown and sheets because she sweated so much at one point. When we got her in the chair, I told her that she was drunk.

    Later on in the early evening, she woke up, holding her head, like she had a hangover. She felt a little nausea then, so Jill gave her some Phenergan before she went off shift for the day.

    Chemo schedule:
    Monday - Cytoxin and Carmustine (BCNU)
    Tuesday - Cytoxin
    Wednesday - Etoposide (VP-16)
    Thursday - Etoposide (VP-16)
    Friday - Etoposide (VP-16)

    Cytoxin: Side effects include lowering of blood count with the risks of infection, bleeding, and anemia. Others are loss of appetite, nausea, vomiting, loss of hair, immunosuppression, and sterility. Inflammation of the bladder can occur, so intravenous fluids are administered.

    Carmustine (BCNU) - Side effects are lowering of blood counts with the risks of infection, bleeding, and anemia. Loss of appetite, nausea, and vomiting are common but preventable with anti-nausea medication. Permanent bone marrow damage is likeliest from this drug if stem cell transplantation is not done. Once this drug is received, the patient must go through with the stem cell transplant.

    Etoposide (VP-16) - With rapid infusion, severe low blood pressure can occur. With high doses, it can cause severe mouth sores. Temporary hair loss can occur. VP-16 can decrease the white cells, red cells, and platelets.

    There was an engagement on the floor today. Sarah's  (nurse) boyfriend from Pensacola came in, got down on his hands and knees, and asked her to marry him. I didn't see it, but all of the nurses were all excited about it.

    I went over to Roper Hospital for my lunch again today. It's cheaper to eat from over there and I've just gotten pretty tired of the selections at the MUSC cafeteria. Plus, it gets me outside, walking across the street.

    Dennis, a leukemia patient got to leave the hospital today. His wife, Sharon and I have talked everyday. We exchanged phone numbers and addresses last night. They are going to a hotel for now, because Dennis needs to come into the clinic everyday for a few days until his platelets are up to an acceptable level. They were excited to get to leave the hospital after being here for so many weeks. Missy is going to be moved to the room that he was in. It's much, much bigger. Jill made the arrangements for us.

    April 25, 2004 Day -8

    "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." Eleanor Roosevelt

    Today is day -8 for the transplant. Day 0 will be the day of the transplant. Hydration will begin tonight around 9:00 and Missy will be getting up to go to the rest room every 2 hours. Chemo will begin tomorrow. She continues to have sweats and also pain from the insertion of the catheter. They are increasing her morphine a little today.

    Hitle is Missy's nurse today. Missy likes her a lot. I can remember what I think was Hitle's first day here. It's back when I brought Missy in for an ESHAP chemo treatment, months and months ago. Hitle is working with Jill, who is always great with Missy too. Hitle's three month training time is almost over.

    While I was out, Missy said that Dr. Redding came in. She was up at the sink, brushing her teeth, so he excused himself and went back out. Missy said that he came right back in, telling her that he had never seen her standing before. 

    Missy wanted some Philly Cream Cheese bars. I went to two grocery stores this morning, but couldn't find any. I found some watermelon slices. She ate some of that for her breakfast after having eaten a Bryers Fruit on the Bottom yogurt.
    Bruce and I went out later to eat lunch and found the bars that Missy wanted at Publix. We went to California Dreaming and had prime rib. I hadn't realized how hungry I was. I have just been eating almost whatever was available here at the hospital, and eating about half of whatever I got, but I ate most of my meal today. It was just so much better than institutional food or getting the same old Chic Fil A sandwich from downstairs. I do plan to try the Roper Hospital cafeteria again. I've heard that they have fried chicken and red rice on Fridays.

    Missy had lots of visitors today. Bruce, Mikey, Christian, MeMaw, Papa Howard, Chip, Brandi, Sean, Heather, and Chase. We took her to the waiting room in a wheel chair to visit with the boys.

    Visiting in the 8th floor waiting room.
    From the left: Bruce's elbow, Mikey, Christian, Missy, Chase, Sean's blue shirt, Heather next to Sean.
    Right hand picture: Missy with Mikey on her lap.

    As the day went on, Missy became more and more nervous and anxious. She is afraid that something will happen to stop the transplant and she is afraid of the transplant.

    April 24, 2004

    Michelle is back today as Missy's nurse. She made sure that Missy got a fruit plate for lunch and has already ordered another one for her supper. Missy ate most of it. Michelle got Missy's dressing changed and Gail came in to see the central line. She had never seen one placed there before either. Michelle explained that the reason was due to Missy's history, the clots and all. It's really a Hickman catheter, but not in the chest. I looked at it. The site really looks good. The difference is that it's not hanging down, like from the chest; it's horizontal, instead of vertical.

    Missy is little puffy today, so Lasix was ordered. The weekend attending is Dr. Sherman. We have never met her before. She told everyone that Lasix was named that because it lasts for six hours. Dr. Smith said that he had learned that from watching E.R.

    Missy's temperature went up to 103.5 this morning, but what's amazing is that she didn't feel bad. She didn't feel hot or nauseated. She sat up and ate her fruit plate. Dr. Sherman told her that hers was the best looking breakfast that she had seen yet. (cantaloupe, pineapple, red grapes, and cottage cheese) Afterwards she wanted a bath and seemed fine. She is napping while she gets two units of blood today. (Her temp came down fine to 99.1.)

    Michelle helped me to lift the ice chest to the tub so that I could drain the water. Minerva had a great idea. When I went to come some ice, instead of putting it in the little ziplock bags, she gave me some for the ice chest in a patient belongings bag. That was a lot easier.

    For a change in eating, I walked across the street to Roper Hospital to try out their cafeteria. The only things open here on Saturday are Chic Fil A and Subway. A couple of the nurses told me that Roper has home style food everyday. The hot line is closed here at MUSC on Saturdays. I brought my food back to the room and found B.J. and her husband Kevin coming to visit. They stayed for about an hour and then drove back to Sumter. B.J. plans to come back on her day off this coming week to stay overnight with Missy.

    Lucy was Missy's nurse tonight. She is always very efficient and kind. During the night, I would rouse up and Lucy was there, checking on Missy or taking care of something. One time during the night, Stacey checked Missy's temperature and it was up to 102 something. I didn't even know that Stacey was in the room until I realized that she was covering me with an extra blanket because she had turned the thermostat down because Missy was so hot. 

    Missy's back still hurts due to the Hickman catheter. When the pain medicine wears off, she really hurts.

    April 23, 2004

    Missy's temperature went up some during the night, but not too high. Her back hurts from where they tunneled in to place the central line. She is glad to have the one out of her groin. Her nurse today is Michelle. She is very kind to Missy. Missy had a lot of pain during the night, so Dr. Redding upped her dose of morphine some. Michelle, Alice (the tech), and I got sort of worried about Missy during the late afternoon. She was really out from the morphine. Michelle got Dr. Redding in and he changed the dose to in between what it was yesterday and today. I hope that Dr. Redding is still on rotation for this unit when the month changes to May. So many times the residents change. I see such enthusiasm from him about his work and the role that he plays in all of this. He is excited about being a physician. I have always felt that way about teaching. We of course know that we can count on Dr. Smith and Dr. Dunder being around, because they are the fellows and Dr. Stuart and Dr. Frie-Lahr because they are Missy's outpatient doctors, but we have met so many different residents that once you get to know one, they are gone, never to be seen again.

    Dr. Redding told me that he would be here all night, that if we needed him to have him paged. Occasionally, they have had to call the night resident to Missy's room. I'll know tonight, that if we need him, someone who knows all about Missy will be the one to come and check on her. That's a measure of comfort.

    Marilyn (nurse) told me about seeing Missy's web page printed out. The only thing that I could figure was that Penelope must have done the print out. Until I told Penelope about the web site, I never had mentioned it to anyone here on 8 West. Pen elope came by again today and she told me that she had printed out part of it, that it's 60 pages or so, so she couldn't print all of it. I feel good about the folks up here on 8 West knowing more about us. So many of them have really become like our friends. 

    Mr. and Mrs. Timmons (room across the hall) brought Missy a mylar balloon today. They are the folks from Florence. He has leukemia. His brother lives in Sumter and my mother sees his aunt each day when she picks Mikey up from school and the other lady is picking up her granddaughter, who is in Mikey's class. They got to talking back in February or March and realized that they both had someone on 8 West here at the Medical University of South Carolina Hospital.

    I talk to Sharon everyday too. Her husband Dennis has leukemia. They are from Conway. He will be having an allogenic transplant in a few months. Sharon spends the night in his room each night. Her sister-in-law takes care of their 5 year old little girl and brings her to visit about everyday.

    There was a wedding here today. The patient in the room next door can't leave the hospital to go to his daughter's wedding, so she decided to have a pre-wedding wedding in the hospital chapel. There was a wedding balloon hanging from his door today, lots of dressed up visitors in the hallway, and much laughter and excitement. The public wedding will take place tomorrow. There are just so many stories in this hospital.

    The night nurse was Katina. She wore the cutest top with frogs on it. She has a thing for frogs. I told her that Renee had promised chocolate TPN and here she brought vanilla again :) Katina just smiled. Stacey is the tech tonight. She told me that she had see the web pages that Penelope had posted, but wanted since it was only part of it, she wanted to see more and pulled the site up on the Internet. Later, Ashley came in, just to visit and talk. She hasn't been Missy's nurse since she went to ICU in February. Missy told Ashley that she has missed her. Ashley had looked at the web site too and laughed about Missy's "country song." Missy is so worried about everything right now, I think that she was a little embarrassed about it, but normally, she wouldn't be. Ashley admired the lavender bunny on the IV pole. He is now sitting on top of the morphine pump, so Missy has renamed him the morphine bunny.  Stacy made sure to weigh Missy before it got too late, so that she wouldn't have to get out of bed at 4:00 A.M. She is always sweet and easy to talk to.

    We had lots of phone calls today. Mama called, Bruce called (3 or 4 times), Jayson called from Iowa, and Jamie called from Georgia.

    Horseshoe area in front of the hospital.
    I can't wait to get Missy out here.

    "Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." Leo Buscaglia 

    April 22, 2004

    At 8:30, someone from Interventional Radiology arrived to take Missy to get her new central line. We were surprised, because before, she had had to wait all day. I told Renee (her nurse) that this was much better. They let Missy brush her teeth and then whisked her away. I wasn't dressed yet, so I decided that it was better to stay in the room rather than sit with strangers in a waiting room way over on the 5th floor anyway. I took a shower and then grabbed Missy's lavender blanket, went over to the Children's Hospital to use the washer and dryer and got it done  before she got back at 11:30. (I have asked her to please let me wash that blanket for 2 week, but she wouldn't let me. This way, I got it washed and back on the bed before she knew that I had done it.) The new line is coming out from under her arm, in her side. One nurse told us that she has worked on the floor for 10 years and that she has only known of one other patient to have one placed there. Dr. Frie-Lahr said that the line works really well there.

    Dr. Frie-Lahr and Dr. Redding came in to check on Missy when she got back. Dr. Frei-Lhar gave us the schedule. They will start hydrating Missy over the weekend with high dose chemo beginning on Monday. That will put the transplant on the next Monday.

    We met the psych liaison nurse, Penelope, today. She came in before London left, but when Missy was sort of zonked from medication. She must be the nurse that works with the bone marrow transplant patients. Someone different came last week. Penelope said that she was out last week. She wanted to know Missy's story, so I gave her the web site address.

    They are going to give Missy a morphine pump. She has never had one before. She has pain at the new site and in her groin area where they removed the femoral artery line. Missy said that they took the femoral line out, then put in a new one to use to get the IV meds to her, since the veins in her arms and hands have been so used and abused. Then they took the femoral line out. At 10:00 tonight, they will put her back on 24 hour nutrition by vein. When Renee took away the 12 hour one, Missy mentioned that she was tired of the vanilla TPN, could she please have chocolate tonight. That tickled Renee.

    Later On:

    Missy was napping so I took my laptop to the family room to work on recording grades. I went back to check on her a couple of times and she would still be asleep. Renee told me that they had set up the morphine pump.

    The third time that I returned, Arlene and Minerva were in the room with Missy. (Both are techs who take vitals, etc.) Arlene had started the party that she had been promising Missy to begin  when I brought her CDs to her from Sumter. They were having a grand time looking for certain songs on the CDs. They really got Missy perked up, listening to CDs and drinking Aquafina.

    About 5:30, we had some surprise visitors. Missy's Uncle Timmie and Aunt Donna came to visit. (My brother and sister-in-law.) They brought Missy a stuffed duck full of goodies. Missy told them about the procedure that she had done this morning. We told them about the plan to begin high dose chemo on Monday with the transplant being the next Monday. Donna looked on a calendar in her purse and found that the transplant day will be May 3rd. That will be Missy's brother, Sean's 22nd birthday. 

    Difficulties show men what they are. In case of any difficulty, God has pitted you against a rough antagonist that you may be a conqueror, and this cannot be without toil. -- Epictetus 50-120, Stoic Philosopher 


    April 21, 2004

    Dr. Frie-Lahr told Bruce that they will get the new central line in on Thursday or Friday. (They have been waiting for her temperature to get to where it didn't spike over 102.) They plan to put it in an artery in her back and have the lumens part come out of her side, under her arm, or put one in both arms if that won't work out. They want to have at least 3 lumens. A PICC line only has 2 lumens. A Hickman has 3. The doctors in interventional radiology will figure it all out.

    One of the nurses said that Missy wins the prize for having to have the most central lines put in and taken out.

    I got back to Charleston at 4:35. Bruce stayed to eat, and left out at 6:00 for home.

    Dr. Redding told me when I arrived that they will be putting in the new central line tomorrow.

    No one seems to know what time Missy will go down tomorrow to have the line placed. 

    Missy had some nausea during the night, but not as much. Having the air mattress for the floor is much better than the recliner.

    April 20, 2004

    Dr. Frie-Lahr told us that the Doplar study looked good. The blood clots aren't there any more. The CT scan showed that Missy has some lymph nodes in her abdomen that have enlarged since she last had a CT scan of the abdomen.

    Blood cultures no longer show any bacteria, so they feel that the fevers that she is still having are from the Hodgkins.

    The plan now is to get a new central line in later this week and go from there.

    I drove back to Sumter after lunch, so that I could teach the computer class. (Only 1 more class in the semester after this.) Bruce came to spend the night in the room with Missy, to help her during the night, and to be there for rounds.

    After the computer class, I went back to my math classroom to organize things for the sub again. I stayed until about 9:20. It was so dark when I came out. The custodians had already gone home. I never knew that the school hallway could be so dark. I had to feel my way down the hall to the door. Once I got there, I could see a little light from the street.

    April 19, 2004

    This morning, Missy went down for the Doplar study of her chest. This was to see how the blood clot that they found before look like now.

    Later, she went for a CT scan.

    This afternoon, Dr. Smith and Dr. Redding removed the catheter from Missy's femoral artery and replaced it. This was done in her room. They say that the ones placed there can get infected easily, so they put in a fresh one. I stayed with her while it was done.  We had two scares with the thing bleeding at 7:15 and then again at 10:30 or so. The nurse, Katina,  had to stop the bleeding with pressure and then Missy had to keep a 20 pound sandbag on the area for quite a while. The first time that it bled, it was due to Missy getting up to go to the rest room. The 2nd time, she had a coughing spell, and it started bleeding. We finally decided that they had forgotten and given Missy her Lovenox shot this morning, when it would have been better to hold it today. They didn't give her the evening shot. (Lovenox dissolves blood clots. She takes it instead of comedian.) Katina held off giving her the night shot of Lovenox.

    It was a full day.

    April 18, 2004 

    Missy's temperature was 102.5 this morning. It still keeps spiking like that every now and then. Overall, she feels better, except for the fevers. She still needs a lot of help getting to the rest room, due to the catheter in that left femoral artery.

    Dr. Frei-Lahr told us that she and Dr. Stuart will be talking with the pulmonary doctors again tomorrow, to see if they have any ideas about how they can help. She wants to do another Doplar study, to see how the veins in Missy's chest area are doing. She is pleased that Missy can say that, over all, she does feel better, even though the fever spikes make her feel bad. That is progress. 

    Missy's red blood cell count is down today, so they will be giving her some red cells later (2 units). Running a fever burns up the red cells and platelets.

    Nicole is her nurse today, so it will be a good day.

    Missy's temperature went up to 102 degrees in the early evening, so they drew blood for cultures again.

    Sonia is her nurse tonight, so it will be a good night.

    Bruce and I went to Walmart today and purchased an air mattress for sleeping on. We also got a 5 day ice chest to keep Missy's bottles of juices in right in the room. It's great, much better than having to run to the nurse's station. I put my Cokes in the ice chest too. It's got wheels and a drain plug, so it will be easy to drain into the bath tub. I put the ice in the chest inside of the ziplock bags that they bring to the room. I ask for extras and the drinks are really staying cold.

    April 17, 2004

    The infection that Missy has, is once again,  something that you get in a hospital. (Either that, or an alligator bit her, because you can get this infection that way too.)

    Enterobacter (En·tero·bac·ter)   a genus of gram-negative, facultatively anaerobic rod-shaped bacteria of the family Enterobacteriaceae, made up of motile, peritrichously flagellated cells, some being encapsulated. The organisms, widely distributed in nature, occur in the intestinal tract of humans and animals. They are frequently a cause of nosocomial infections, arising from contaminated medical devices and personnel.

    Enterobacter agglomerans is a species found on plants, in water, and in the human intestinal tract. It is a potential pathogen, causing a variety of infections, including those of nosocomial origin. 

    Sonia was Missy's day nurse again today, so it was a good day. We all had a good laugh when Missy's buzzed the nurse's station asking for some nausea medication and some pain medication. Sonia came back on asking Missy, "Would you like ativan or phenegan?" Missy chose phenegan. Then Sonia asked, "Pill or IV pain medication." Missy chose IV.   Then Sonia asked her if she would like cough syrup too. Missy said, "No thanks." Then, Missy said to me, "Am I at Sonic? I'm, ordering on a speaker." I got so tickled. I had to leave the room, I was laughing so hard. If found Sonia and told her about it between laughing. She was worried that Missy was mad. I told her no, that Missy was just being funny. Then Sonia said, "She's going to be disappointed when I don't come in there on my roller skates."

    When the night nurse, Tynetta brought in the TPN (food that goes in by vein), I said, "Oh, it's feeding time." Missy said, "Oink, oink." Tynetta and I just about fell on the floor laughing at her. Missy just smiled.

    Missy's temperature keeps going up. Not as high as 103.9, but to around 102.5 degrees.

    April 16, 2004

    Missy had a great night. Theresa is always so good to her. She slept for hours and so did I. We didn't stir until her vitals were checked at 7:30. They weighed her before she went to sleep so as not to disturb her at 4:00 A.M.  Sonia is her nurse today. She is great, anticipating what Missy needs before Missy knows that she wants it. Valerie (nurse) is here too. She has been to the Family Circle cup tennis matches. She told us about seeing all of the women tennis stars play. She isn't Missy's nurse today, but she comes in anyway. We really enjoy talking to Val. Missy's loves for her to be her nurse too.

    Missy is much better today. Dr. Frie-Lahr asked her in what way did she feel better and Missy told her that she doesn't feel as sick. She has had very little nausea. Now that the antibiotics are actually getting into her system, her temperature is not spiking up so high.

    April 15, 2004

    Missy's veins just aren't holding up so the plan is to put a catheter in her femoral artery today. I have figured out how to stop the IV machine and have done so when Missy has said that a vein was going to go. Dr. Redding and Dr. Dunder put the line into Missy's left femoral artery. Her nurse Renee and I stayed with her. It was done in the room, taking about an hour. They had estimated 20 minutes. This line has 3 lumens. Renee was able to immediately hook up Missy's antibiotics to the new line. Missy has to wear only nightgowns now.

    With Renee as the day nurse and Theresa as the night nurse, things went smoothly. They kept her comfortable. Things are looking up.


    April 14, 20004

    I spoke with B.J. last night and this morning. Missy's temperature spiked to 103.9 last night. B.J. told me that they are taking her down for a CT scan today. Plus, they are going to take the PICC line out of her arm in case of infection there. They will have to start using the veins in her hands and arms.

    I worked today. I stayed on after school and the faculty meeting organizing sub plans again. I don't know what I would do if not for the student helpers that I have this year. They even help out the sub when I am not here. They know exactly what to do.

    Missy called me after school while I was still working. She needs me to come back to Charleston. Her hands hurt from the IV. Veins keep popping. She said that they have told her that they will put a line in her groin tomorrow. I called Lynn and told her to get a sub for Thursday and Friday. I stayed to finish up the work at school and left about 7:00 for home. I had never really unpacked, so I just added a few things to my suitcase and I was on my way back to Charleston by 7:30. I arrived in her room about 9:45. She was in pain. She told me that the IV in her hand was burning. I got the nurse to come in. She looked at it, saying that it looked fine to her. She left. In a little while, Missy was crying. I got the nurse back again. Once again she said it looked fine. I had explained to her both times that every time Missy says that the IV is bad and the nurse doesn't change it that the vein ends up blowing and swelling. She once again said that it looked fine. She gave Missy a pain pill and a sleeping pill. We went on to sleep. The next thing we know, the nurse is at Missy's bedside saying how sorry she was. Missy's hand was swollen to twice its size. The IV was, of course, infiltrated. I reminded her that I had warned her about how Missy could always tell that a vein would go. I told her to be sure to put in her report that I had talked to her about it more than once. A different nurse came in and moved the IV line. It took her about 5 minutes. After that, Missy told me that she didn't want the first nurse to be her nurse again. I told her that I would be talking to Dr. Frei-Lhar about the problem of nurses not listening. Well, the woman must have been listening at the door, because she came in telling me that I had every right to talk to the doctor, but that she has looked at the IV  and it had looked and felt fine to her. She left and came back saying that she had called Dr. McCardy (must have been the night resident) and told him what had happened. (Sure hope that it made her feel better, because Missy's hand was still hurting.) She came back in in a little while, still making excuses. I was sick and tired of it, so I told her to get out of the room so that Missy could get some rest.

    We didn't get much rest. Phlebotomy came in and took blood. Later, the new vein started hurting. You should have seen the nurse fall all over herself getting that one out and someone in to put a new one in. The rest of the shift, she was sweet as sugar to Missy, but I got the cold shoulder. 

    April 13, 2004

    Missy's temperature spiked to 103.8 during the night. She feels wrung out this morning. She is sleeping a lot. Thank goodness, no nausea when she is asleep. She wanted water with lemon juice in it during the night. We used one of the lemon juice packets that comes on the meal trays with the iced tea. The day nurse is Jill (brunette) again. She will make sure that Missy gets her meds on time.

    Dr. Frei-Lahr feels that they now have Missy on the right antibiotic and that we should see a turn around in a few days.

    I returned to Sumter so that I could teach the computer class. The semester is almost over. B.J. went to Charleston to spend the night in Missy's room. Missy's grandmother, Opal, stayed in the room with her until B.J. arrived.

    "Difficult times always create opportunities for you to experience more love in your life." - Barbara De Angelis

    April 12, 2004

    Dr. Frie-Lahr told us that the blood cultures finally showed something. They will soon know exactly which medication to give Missy. She has c. dif. for sure. The culture from the other day has proved that out. They have her the right meds for that. Jill (the brunette) was her day nurse. She made sure that Missy got her nausea meds on time. Bruce went back to Sumter. Missy said that she was feeling better today and attributes that to the food by IV. She slept a lot during the day, but woke up to watch "The Swan" on TV. We watched the 10:00 news on Fox. The news is covering all of the events leading up to the burial of the Hunley crew. We are fascinated in it all because my maiden names was Ridgeway and one of the crew members was a Ridgeway. We want to find out what sort of cousin he was to us. His name was Joseph F. Ridgeway. We are betting that his middle name was Friendly. (Lots of our Clarendon County male ancestors were named Friendly.)

    Missy wanted a Carnation Instant Breakfast with milk this evening. She kept it down.

    Missy's night nurses are Jill (the blonde) and Hital.  They always make sure that Missy gets her meds on time.

    April 11, 2004 Easter Sunday

    Missy's temperature spiked to 103 degrees during the wee hours this morning. The doctor on duty ordered a different medication, Voriconazole. The nurse told me that the team had left orders that if her fever spiked again, to change her to that medication. I looked it up on the Internet. "Voriconazole is a new second generation triazole effective against a wide spectrum of fungal pathogens." They are giving her more nausea meds, more regularly. They are using phenergan, Zofran, and may add Haloperidol. She hasn't thrown up for hours now. Val, her nurse is seeing to it that she gets the meds on time and is comfortable.

    Missy had an upset stomach about 7 or 8 times yesterday. Dr. Redding (the resident) told me this morning that the c. dif. test that he ordered will take a couple of days before they have results.

    Dr. Green was the attending again this morning. He is very personable. He got a smile out of Missy, rubbing her head  telling her that he likes her hair do, that it's sort of like his, except that he has a wider part. (The whole top of his head is bald.) She got him to smile when he asked her which was bothering her the most, the nausea or the diarrhea. She said, "The diarrhea is the just icing on top of the crap cake." 

    Dr. Green wants a CT scan done today to see if he can figure out what might be causing the nausea. He examined her carefully again today. She has some small lymph nodes in her neck. Her spleen and abdomen are fine. He is pleased with her breathing.

    At about 3:30, Valerie, Missy's nurse told us that they are going to start the nutrition by IV at about 10:00 tonight. They are putting her back on Flagell, which is medicine for c. dif because she has had it before and she has the signs of having it again. They are going to hold off on the Haloperidol, because the increased doses of Phenergan seem to be working.

    At about 4:00, Missy told us that she wanted a Krispy Kreme doughnut. Bruce went across to west of the Ashley to get her some doughnuts. He came back with a dozen hot ones. Missy ate one and we gave the box to the nurses.

    Bruce and I will stay at the Charleston Riverview Inn tonight, using the reservation that I had made for me and Missy to stay so that we would be here early for her CT scan on Monday morning.

    "The inspiration of the almighty gives man understanding." -- Bible

    April 10, 2004

    Missy is still very nauseated. The day nurse, Joan, talked with Dr. Smith about giving her phenergan more often. Zofran just does not work for her. Dr. Smith happened to come into the room about 7:30 this morning when Missy was being sick. He sent Joan in with phenergan. He came back about an hour later to listen to her lungs. He told me that they can give her the phenergan and ativan more often. It has been every 6 hours. Now it can be every 4 hours. She had a Carnation with milk about 10:00. She said that she wanted something on her stomach. Joan is working on getting her some Tums. Dr. Smith okayed the Tums for her heart burn. They still have her on cefepime. Cefepime eliminates bacteria that cause many infections, including pneumonia and skin and urinary tract infections. 

    The weekend attending, Dr. Mark Green, checked Missy over. He promised her that they would get her comfortable.
    Dr. Smith is on duty this weekend.

    Barbara, the night nurse is going to recommend that they give Missy nutrition by IV, because she is not eating. The nurse says that her stomach needs to rest.

    In every difficult situation is potential value. Believe this, then begin looking for it. 
    -- Norman Vincent Peale 

    April 9, 2004 Good Friday

    They did a chest xray and started the usual round of tests to check for infection. Dr. Frie-Lahr ordered some antibodies. She said that Missy's blood work showed that her antibodies were low and that this would help her fight infection. The plan is to keep her in the hospital until the transplant process is done. If the fever is under control by over the weekend, things will begin on Monday as planned. Otherwise, it will be delayed by a few days.  Missy has a lot of nausea. All that she has been able to put on her stomach has been the 3 Carnation Instant Breakfast packets with milk today.

    I walked over to the Eckerds on Calhoun Street while Missy took a nap. I saw a lavender Easter bunny hanging from a display. He is now hanging from Missy's IV pole. We call him the "IV Bunny." He matches her blanket. Lavender is her favorite color.

    The IV Bunny

     "At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us." Albert Schweitzer

    April 8, 2004 24 Hours at Home

    Missy had a good night. She wanted to sleep late, so I just gave her the morning meds and let her nap. She came down mid morning to have some yogurt, Carnation Instant Breakfast, and juice. That's all that she wanted. She had bath, which tired her out so she decided to watch a bit of TV in her room. I checked on her, taking her temperature, which was at one a point a little above normal, so she took 2 Tylenol as were were instructed by Dr. Frie-Lahr. I talked with Dr. Redding (the resident) on the phone around 3:00 and was able to tell him that she was fine and having a snack of another Carnation Instant Breakfast at that moment.

    Missy came downstairs around 6:00 to be with us for supper. She sat on the couch, watching TV. Before too long, she mentioned that she was cold, so I covered her with an afghan and went to get a thermometer. Before I put it in her mouth, she told me, "We going to have to go back to Charleston." She was right, her temperature was 102.8. Before I could get to the phone to call the doctor, she needed her pan so that she could throw up. This was a real throw up bout, not a cough tickle that aggravates the gag reflex. She was really vomiting. I took her blood pressure, which was good at 111 over 78. Once she was settled and eating her supper, which she really wanted to do,  I called Charleston, leaving a message with the paging operator for the hematology fellow to call me back. When  Dr. Dunder got back to me, Missy was  still trying to eat her supper. She wanted a good meal before going back to hospital food. She was eating a shrimp when he called. He arranged for a room, we got ready, and were in Charleston by about 10:00. They got her back onto an antibiotic and some fluids to combat dehydration. She didn't get much sleep, with the nausea, etc.  So, we got to spend about 24 hours at home. I wonder how long it will be before we get home again.

    "There's no place like home." Dorothy, The Wizard of Oz

    April 7, 2004

    Missy had a breathing test today, to prepare for the stem cell transplant. She passed with flying colors. We met with Dr. Frie-Lahr at the Rutledge Tower. She explained the details of Missy's condition. They can go through with the stem cell transplant. Dr. Frie-Lahr feels that there is sort of infection because of the response of her fever to the antibiotic. She explained the risks, the possibility of complications, etc. Dr. Frei-Lahr says that they will do everything inpatient, instead of part of it outpatient as we had previously planned. Missy signed new consent forms agreeing to the transplant. Since her fever has gone down (not to normal, but enough) she will be allowed to go home with us, returning on Monday to begin the transplant process. We are to watch her carefully. If her temperature goes over 102, if she has chills, we are to call the hematology fellow on call (Dr. Smith or Dr. Dunder) and get him to arrange a room, and bring Missy back to Charleston, where she will stay until the transplant is over and she is recovered enough to go home. If the top number of her blood pressure drops below 80, we are to take her to the local emergency room and get them to take care of her, and transfer her by ambulance to Charleston.

    So, we finally left today, about 4:30. Missy ate a good supper when we arrived home. She even sat up and watched some TV with us.

    April 6, 2004

    Bruce and I drove back to Charleston to be with Missy. We both stayed in the room with her. We made a pallet on the floor for Bruce and I used the recliner again. They have taken her off of antibiotics. Her temperature does not stay at normal all day, but it's not shooting up to 102 or 103 either.

    April 5, 2004

    Mama (MeMaw, my mother) and Missy's cousin, Chase, visited with Missy today.

    April 4, 2004

    Missy, Christian, and Mikey in the 8th floor waiting room.
    Christian is being silly. Mikey is a little sleepy.

    Bruce brought Mikey and Christian to visit with Missy. She had to go out into the waiting room to see them. That sure got her out of bed and walking down the hall. She visited with them by the picture window over looking Charleston. They were fascinated by the view. We got a wheelchair and all of us went down to the cafeteria for lunch.

    After lunch, Missy took a nap and Bruce and I took the boys to the Battery to see the sail boats on the water. We parked and they were able to climb on cannons and cannon balls.

    When we returned to the hospital, Missy was too tired to come out again and visit with them again, so we drove home.

    Missy and Christian, looking out over Charleston.

    April 3, 2003 Mikey's 6th birthday

    Missy hated missing Mikey's birthday. She had already missed Christian's. Dr. Frie-Lahr is the attending since the month has changed to April. She told me that they should have results from the new biopsy maybe by Tuesday. We have planned to meet on Wednesday, to discuss the biopsy results and treatment plan.

    Missy is somewhat better, but the fever has not gone entirely.

    April 2, 2004

    Missy's PICC line was moved from one arm to the other to be sure that the line is not causing the infection.

    I drove back to Charleston to be with Missy for the weekend after work today. As I was heading out to pick up a non hospital supper for Missy, Dr. Smith and I ended up on the same elevator. He told me what he told Bruce. They may just keep Missy here in the hospital until they have her stable enough for the transplant.

    April 1, 2004

    They decided to do another needle biopsy, but we didn't know about it until it was over. They stuck her in two places, on  her side again and through the left chest, in front.