February 22

Dear Family,
I wanted to give you a quick update on how things have been going for Lulie since she returned home from the hospital last week. Things have been improving and Mom seems to be getting stronger and feeling better each day. She still is rather weak and a bit trembly, but her appetite and taste for food has improved and she is eating quite well. Within a few days of being home and off all the IV meds and fluids, she got rid of about 20 pounds of excess water in her system. That made a big difference. A little thing happened on the day Mom was being released from the hospital and looking back, it seems like one of those real tender mercies. The doctor had just left the room and Mom was sitting back down on her bed. I noticed that she had some blood on her hospital gown near her left arm and further examination showed that it was coming from her picc line (3 port) and in fact, the tape around the picc line had come loose from her arm and the line had come out a few inches. I went out to tell her nurse and Dr. Wallentine was still on the floor and he told the nurse to just pull the whole thing. She pulled out the line and Mom's vein really bled. The nurse put pressure on the site, but the blood filled the gauze bandages and she needed to get some more gauze. I put on a pair of gloves and took over holding the pressure on Mom's arm until the nurse returned with more gauze and took over. In less than a minute, the bleeding completely stopped! The great thing about all of that is that Mom hasn't had to deal with the annoyance of the picc line ports dangling from her arm and getting in the way and it is so good that she won't have to worry with that when we go on the Sisters Retreat next week.
Val and I went with Mom to her appointment on Tuesday (the 19th). She had a chest x-ray so they can determine the status of her pneumonia but there wasn't time for the radiologist to compare this x-ray with her previous one. However, Mom seems to be improving although the pneumonia isn't completely cleared up. We were excited when we got the results of her labs: WBC 3.61 (almost to the normal range); RBC 4.73, HGB 14.7 and Hematocrit 43.8--all in the normal range!! That is a first since before this whole mess started. Mom's platelets were at 139 (one point under the normal range of 140 to 440) and her neutrophils were at a whopping 2.82!! Her albumin was finally back in the normal range at 3.5 which indicated that she was getting some good nutrition in her. The doctor started her on coumadin again to thin the blood because she still has blood clots. With all the nightmare of things that have happened with this last round of chemo recovery in the hospital, Mom has had some real anxiety overwhelm her and so the doctor prescribed some Lorazepam for that and it seems to have been helping. As the effects from the oxycotin she received in the hospital have worked their way out of her system, Mom has felt better and clearer in her thinking. Every day she has sounded more like her real self. Every day she is able to eat more variety of foods and do more "chores" for herself. At the doctor's office, she was able to keep her oxygen level at 93 on room air, but she still is using the oxygen at night and occasionally during the day while she continues to fight off the pneumonia. We are so happy for these improvements and continue to pray for her strength to return. Even if she isn't at peak performance, she will still be well enough to head out to Houston with us girls on the 28th. Thanks for all your faith and prayers.
Love,
Kathie

February 16

We brought mom home from the hospital yesterday (Friday). All her blood counts were great, but she still feels quite sick. She hasn't needed any pain medicine since Thursday evening. I hope that getting those meds out of her system will help her to think more clearly and feel better. Our biggest concern now is that she start to eat and get out of the malnourished state she is in. Eating is really hard for her, but this morning she was a champion and ate a fried egg, 1/4 piece of toast, cup of yogurt and a glass of milk. I am going to try to see if she can tolerate a "green smoothie" so that I can get some fiber and good nutrients in her. She is still on oxygen. The liquids she has been retaining are starting to come off. She already is looking better after being home just 20 hours. If any of you have sent her e-mails, mom wants to let you know that she is sorry she hasn't read any of them yet. She was just too sick this time to even open her computer. We will try to get online and read some of those messages on Sunday. We are trying to have someone with mom round the clock until she gets some of her strength back. She is still very weak. Her next doctor appointment is Tuesday afternoon. They will take a chest x-ray then to see how her pneumonia is doing. Mom sends her love to all of you and expresses thanks for your prayers in her behalf. She is really enjoying the quiet of her home, and isn't worried about being there alone. She actually loves it. I try to stay downstairs or out on the deck when I am there, except when I need to cook and encourage her to eat. Maybe that way she will feel not to bothered and fussed over. Lisa spent the night with her last night and Kathie is there with her this afternoon. I will return and be with her tonight and tomorrow. We may have to call on some of you to help stay with her, but we will see how she is doing each day to determine her needs.

More later,
Valerie

February 12

Mom is telling me that she feels like she has some new jobs at the hospital. She has recently been given the opportunity to evaluate service on other floors in the hospital, namely the 5th floor. This morning she is back up on the 7th floor, and is "glad to be back home" (which is what she has told all the nurses she has seen), after her 2 day stay on the 5th floor. Mom was transferred down to the 5th floor on Saturday evening (the family was not informed of this change of level of care) because she was experiencing some different kinds of pains in her chest. The 5th floor has equipment to monitor the heart and that is why she was moved. Dr. Wallentine wanted her checked for possible heart attack issues. A cardiologist checked mom and felt like things with her heart were good, but still wanted Mom to have a thalium test on Sunday morning. Dr. Wallentine also ordered a bunch of other tests, which all turned out good. Mom has developed pneumonia and has been feeling pretty weak with that. She is trying to get up and walk more now. She has felt pretty winded when she tries to walk a few laps around the floor. The more she walks the better it is for her lungs. She is doing some exercises to help her lung capacity, but the doctors say that walking is the best for her lungs. The really GREAT news is that mom's neutraphils are climbing more rapidly than they did before. Sunday her ANC count was at .3, Monday it was .6 and today it is .8. She actually was at .8 when she came home on Christmas Eve, but she didn't have pneumonia then. Dr. Wallentine said that her lungs sounded better today. We think those white blood cells are recovering and are helping fight the pneumonia. YEAH!

It is sure a good thing that we decided against decorating her room this time, we would have had those nurses going crazy taking down and putting up all our decorations with each move she has made. This is the fourth room she has been in since she came 12 days ago. We are recognizing what a special blessing it was for her to be in room 789 the whole month of December.

Here is a funny story. Mom recognizes that her thinking has been a bit foggy lately, but when she was down on the 5th floor she told Kathie that she kept thinking she was on the 5th floor in the University of Utah hospital. Yesterday Kathie saw a big U of U hospital logo on one of the pillows when they were changing the sheets on the bed. They figured that mom had seen this and thought she was at that hospital. It was reassuring to mom that she hadn't been so foggy in her brain to have missed traveling from the hospital in Provo to the hospital in SLC. She is not as groggy as she thought she might have been.

This has been a rough go-round for mom this time. She is relieved that she is starting to recover. I would love us all to focus our prayers in her behalf to the near future. We have our mother-daughter retreat planned for February 29 - March 4. We want mom to be sufficently recovered to be able to travel to Houston with us for that retreat. Dr. Wallentine told mom to focus on feeling well enough by then so that she could make that trip. He said that he would wait until after that to do her next bone marrow test. Sometimes I wonder what to specifically pray for regarding Mom. Well, here is a specific. We want her to have a wonderful retreat with us. She loves these retreats so much. If you feel it is appropriate consider asking the Lord for such a special blessing to come to her.

Love, Valerie

February 6

Dear Family,
The last news about Mom that Val sent out indicated that Mom has really not been feeling well during this round of Chemo recovery. She has felt pretty crummy so far this week, but thinks she might be turning the corner. She had a good night's sleep from Sunday to Monday--the first in several days. On Monday she still had a low grade fever. Also, her albumin level was low meaning that she is not getting enough nutrition. The doctor said that the pain she has been feeling in her chest and all around her torso could be the result of a Nulasta shot she received on January 26th, the day she finished her second round of chemo. The Nulasta stimulates the bone marrow to start producing blood cells; however, it can make the bones ache from working so hard. I asked about the possibility of Mom's picc line being infected but that was ruled out. Mom did need to get platelets and two units of blood on Monday. She started feeling worse as the day went on and felt that there wasn't enough room inside for all the fluids they were pumping in her. She still ached all over and was not sleeping well.
On Tuesday morning she was still achy and felt puffy and swollen. She doesn't have any fluid in her lungs and her fever was down so that was good. Her albumin was still low and Mom is having a really hard time eating so they started her on a TPN drip (Total Parental Nutrition) which should give her the nutrients she needs. Also the doctor ordered Zofran (nausea) and Oxycotin (pain) to be given on a regular schedule in order to keep the pain and nausea under control. After Mom took the Oxycotin, she went off to La-la land and slept all day. Jason and his roommate gave her a blessing in the evening and then she conked out for the whole night and slept soundly.
This morning when I saw her, she was still feeling doped up from the Oxycotin and didn't want to take it any more. The doctor ordered the dose to be cut in half but Mom still chose not to take it unless she really feels in pain. She doesn't like the way it makes her feel at all. She was still pretty sleepy but is starting to feel a little better. At least the Oxycotin allowed her to get a really good night's sleep after not being able to sleep well for several days. Her hematocrit is up (good) and she is getting the IV nutrition and managing the nausea a bit better so we are hoping she is moving past the worst part of the recovery. Mom's neutrophil count is still at zero. Last time the count stayed at zero for 16 days so it will probably be Sunday or Monday before we see that count begin to climb. Let's pray that it will start to move faster than that since Mom has had to go through all these aches and pains. We'll continue to give you updates and hope they will keep getting better.
Love,
Kathie

Sunday, February 3rd

Do you want to know what's going on with Lulie, well so does she. Mom just is still not feeling very good. Friday night mom did not sleep very well. Her temperature went up and hovered around 100.8. Mom said that she just ached all night long -- from her head to her toes and that she was extremely nauseous all night long. Saturday morning they gave her some Lori-tab and some Zofran. When I saw her Saturday afternoon we figured out that she hadn't had any anti-nausea medicine since she arrived at the hospital. Wow! she had been taking phenegren every 8 hours at home and neither she nor I thought to ask about having that continue when she got to the hospital. I filled out some papers for her on Friday morning indicating what meds she had been taking, and I don't know how long that information takes to get to the nurses on the floor. Anyway, I think she would have avoided a lot of that nausea if we had thought to ask about her continuing her anti-nausea regime. Presently she is getting some Zofran (anti-nausea medicine) on a regular basis. The Lori-tab that she took yesterday helped with all her aches long enough for her to get some sleep. Saturday night and throughout today, (Sunday), mom has continued to have this ache and discomfort around her torso. She is unable to feel comfortable sitting up or laying down and it is just downright bugging her. Heart attack has continually been ruled out as a cause of this pain and discomfort. Her temperature is generally around 100.4. Pheobe called Aaron and asked him about it and he thinks her PICC Line should be pulled. They often get infected. Mom's nurse has a call in to Dr. Bott who is on call this weekend, to see what he suggests. I intend to call mom later this evening and find out what has happened.

Please keep praying that mom's doctors, nurses, etc. will be inspired as to the proper care that she needs. I know you all love her and want to do whatever you can for her. Right now I think she needs our collective prayers. If there is something that can be done to help with her situation we want the medical personnel that is caring for her to know what to do.

my love to you all,
Valerie

Friday, February 1st

This morning both Kathie and I were checking up on mom. Last night mom really suffered from the chills. She trembled and shivered so much that this morning she ached all over. Her fever had gotten up to 103. After being covered in warm blankets she was finally able to get back to sleep and when she woke up she was feeling warmer and the shivers were gone. Her fever came down, but I'm not sure how much it came down. Dr. Wallentine said that her blood cultures had grown something. They know it is a gram positive bacteria in her blood, but it is too early to identify which gram positive bacteria. They put her on another antibiotic - Vanco. Mom said that this is the worst she has felt during this entire Lukemia experience. the doctor told her to rest as much as she could. They are not expecting her to walk laps around the floor at the present time. She is a bit frustrated that her thinking isn't clear again. The pain in her chest came back again after she ate breakfast. When I left she was ready to sleep again. We will keep you posted.

Thursday, Jan 31

Well, mom might be setting up residence in the hospital again for a while. Last night when I arrived at mom's house and talked to her a little before we both went to bed she was doing pretty good. She didn't feel great -- still felt like there was a band around her chest, but she was wondering if maybe she just had a very irritated esophagus. Her temperature was 98.7 but she was feeling a little cold and had on extra warm pajamas. She slept very soundly and didn't get up until 10:00 this morning. She was a little unsteady when she tried to walk but she was able to eat some granola for breakfast but could only eat half of the bowl and just felt very tired, so she went back to bed and slept until around 2:00. She got up again and finished her breakfast and continued to feel trembly and a little chilled. She decided she should call the clinic. She spoke to Kathy, her case manager, and at her request took her temperature. Bad news -- her temp was up to 101. Kathy said that she needed to go to the ER. Mom told her she would really like to bypass the emergency room experience. Kathy spoke to Dr. Wallentine and he called over to the hospital and essentially got mom admitted. Mom called Aunt Maxine and she drove her to the hospital. They simply went to the nurses station on the 7th floor where they had a room waiting for mom. Talk about service!! X-rays were taken of mom's lungs and came back clear. They took a lot of blood for various tests and started mom on an antibiotic -- maxipime. Now they will try to figure out what kind of an infection she has. Mom continues to feel tired and has a bit of a hard time staying awake. She thinks they will probably keep her there until her ANC count starts climbing again. That could be a couple of weeks. We will see.

Valerie