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
Friday, February 22, 2008
Saturday, February 16, 2008
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
More later,
Valerie
Tuesday, February 12, 2008
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
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
Wednesday, February 6, 2008
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
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 3, 2008
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
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 1, 2008
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
Valerie
Wednesday, January 30, 2008
Monday, January 28
Dear Family,
As you probably remember, Mom had a second round of chemo last week. One kind was administered by an IV drip at the clinic on Monday and Tuesday and the other was in a constant drip in her picc line from a pump that Mom carried around with her in a fanny pack. On Saturday morning, she had the pump disconnected. She still has the picc line (single port) and they expect it to stay in until she is finished with all her rounds of chemo. She has been home all through this treatment and is much happier about that. She met with Dr. Wallentine on Friday and he felt that things were going well but he did expect that Mom's blood levels would drop by the first of the week. Mom went for a blood test this morning and called me a few minutes ago to give me the results--
Hematocrit - 32.6 (normal range 37 and above);
Platelets - 42 (normal range 140 - 440);
Neutrophils - .o [nada, nothing, zip] (they would like these to build back up to 2.0)
We will all be hoping that Mom's neutrophil count will come back up faster than it did last time. She now has no white blood cells to fight infection and is keeping fairly isolated at home. She had been on coumadin to thin her blood, but she stopped that on Friday. On Saturday when she had the pump disconnected, she also received a shot of a drug called Nulasta which is a long lasting drug which stimulates the bone marrow to produce blood cells. Yesterday she was feeling kind of crummy all over and she is feeling about the same today but hasn't run a fever. However, the doctor called in a prescription for Cipro for her so it can start fighting infection immediately. Mom thinks she will feel much better when the Cipro kicks in. She wants everyone to know that she is still on her feet, doing well and taking care of Dad. Food has started to taste bad again. She is thirsty all the time but water tastes metallic and so she is trying to find liquids that taste okay enough. She will go in again on Wednesday for another blood test.
She still enjoys getting emails to keep in touch.
We'll continue to keep everyone posted. Keep praying that her counts will go up quickly.
Love,
Kathie
As you probably remember, Mom had a second round of chemo last week. One kind was administered by an IV drip at the clinic on Monday and Tuesday and the other was in a constant drip in her picc line from a pump that Mom carried around with her in a fanny pack. On Saturday morning, she had the pump disconnected. She still has the picc line (single port) and they expect it to stay in until she is finished with all her rounds of chemo. She has been home all through this treatment and is much happier about that. She met with Dr. Wallentine on Friday and he felt that things were going well but he did expect that Mom's blood levels would drop by the first of the week. Mom went for a blood test this morning and called me a few minutes ago to give me the results--
Hematocrit - 32.6 (normal range 37 and above);
Platelets - 42 (normal range 140 - 440);
Neutrophils - .o [nada, nothing, zip] (they would like these to build back up to 2.0)
We will all be hoping that Mom's neutrophil count will come back up faster than it did last time. She now has no white blood cells to fight infection and is keeping fairly isolated at home. She had been on coumadin to thin her blood, but she stopped that on Friday. On Saturday when she had the pump disconnected, she also received a shot of a drug called Nulasta which is a long lasting drug which stimulates the bone marrow to produce blood cells. Yesterday she was feeling kind of crummy all over and she is feeling about the same today but hasn't run a fever. However, the doctor called in a prescription for Cipro for her so it can start fighting infection immediately. Mom thinks she will feel much better when the Cipro kicks in. She wants everyone to know that she is still on her feet, doing well and taking care of Dad. Food has started to taste bad again. She is thirsty all the time but water tastes metallic and so she is trying to find liquids that taste okay enough. She will go in again on Wednesday for another blood test.
She still enjoys getting emails to keep in touch.
We'll continue to keep everyone posted. Keep praying that her counts will go up quickly.
Love,
Kathie
Monday, January 21, 2008
Round 2
Lulie went to the hospital today to receive her first injection of chemo, round 2. She will stay at home unless needing to be hospitalized for infection. She will be more comfortable in "isolation" at her own home. We'll keep everyone posted on her progress!
Friday, January 18, 2008
Biopsy Results
I went to the doctor today with Mom and we found out some of the
results of her bone marrow biopsy from last week. The report was
pretty much what was expected. Dr. Wallentine indicated that the
bone marrow was in an early stage of recovery. However, he wasn't
quite able to say that she was in remission because there were still
some cancer cells present. He recommends that Mom start a second
round of chemo therapy on Monday. He was going to talk to one of the
pathologists about mom's situation and then call her on Saturday and
let her know whether he recommends that she have a continuous
infusion of chemo at the hospital for 5 days, or whether she receives
her chemo in 3 doses next week at their lab and goes home each time
with some sort of a "piggy back" pack. More to come tomorrow.
Valerie
results of her bone marrow biopsy from last week. The report was
pretty much what was expected. Dr. Wallentine indicated that the
bone marrow was in an early stage of recovery. However, he wasn't
quite able to say that she was in remission because there were still
some cancer cells present. He recommends that Mom start a second
round of chemo therapy on Monday. He was going to talk to one of the
pathologists about mom's situation and then call her on Saturday and
let her know whether he recommends that she have a continuous
infusion of chemo at the hospital for 5 days, or whether she receives
her chemo in 3 doses next week at their lab and goes home each time
with some sort of a "piggy back" pack. More to come tomorrow.
Valerie
Monday, January 14, 2008
From Lulie
Friday, Jan 11 I went to the doctor's to have a bone marrow biopsy so see what kinds of blood or cells might be growing in the marrow. The results from that will be back by the next Friday. After that, I will know what the next phase of treatment is. I am still feeling great.
A note from Lulie
This is a bit old, but still has good info.
Dear Family and friends,
I guess it is time for another update after being home for 12 days on my own, but being babied and fussed over by Valerie and Kathie every day. I have enjoyed the quiet of my home, and the slow pace of doing what I felt like doing. How many of you would like to be doing that? I am driving the car and getting myself to places that I need to be, like the lab for tests on a regular basis.
I spent a good part of the day Friday (yesterday) in doctors' offices . Dr Wallentine was pleased with the report on my blood. I am climbing in all aspects; platelets and red blood cells are in the normal range and white blood cells continue to climb and are high enough that I can now roam where I want to and have family come by. In other words, I am out of isolation and can go out in public, using caution. Next Friday the doctor will do a bone marrow biopsy to get a look at what is really happening in the blood marrow. Good news.
Today I showed him a sore spot on my arm that looked like a blood clot to me and he decided to have me get an ultra sound of the veins and sure enough there were blood clots but blood was still able to flow through the vein. The final decision was that I needed to be on blood thinners for the next 6 months. So I had a shot in the belly, and then went to the pharmacy to buy some cumedin that I need to take every day. I was sent home with the shots for the belly for Saturday and Sunday that I would self administer and then would have to go back to the office on Monday for a blood test to see if the clotting mechanism was reducing. I also went to the chiropractor to see if I could get some relief from my neck and back pain (probably caused from being in bed too much the past month.)
I thought you might be interested in a "tender mercy" that happened in connection with this experience. When I had finished with the ultra sound, the technition told me it was really a good thing that I had the ultra sound when I did. She called my doctor to give him the results, and he asked that I come right up to his office while he and others decided what would be the best way to treat it. After a while the lab technition came out and called me back into the lab. She told me that the shots I needed were very expensive and not covered by insurance, but that a patient had brought in half a box of the syringes that she hadn't needed and asked that the lab give them to someone who needed them. So I was the lucky recipient. I was told to bring one of the syringes in on Saturday morning and another on Sunday morning at 8 a.m. and they would administer it. I said I didn't think it looked to hard to do, and why couldn't I self administer it. The nurse said if I felt comfortable doing it I could do it that way. So this morning I gave myself the shot, almost perfectly, and tomorrow am confident I will do it perfectly. Wasn't that a "tender mercy" to not have to pay for the shots? I hope that I won't need all of them so that I can turn some back in so someone else can benefit as I did.
I have come to expect that the road ahead for me will be filled with a few bumps so I don't get upset with things like blood clots. I am just glad that we are able to be led to get the bumps addressed before they are major problems.
I feel well, I feel optimistic, I feel loved and supported. Your prayers for me have lifted my spirits and have been answered in a marvelous way. I am so deeply grateful to all of you and for the constant assurance of the Spirit that all is well.
With much love,
Lulie
Dear Family and friends,
I guess it is time for another update after being home for 12 days on my own, but being babied and fussed over by Valerie and Kathie every day. I have enjoyed the quiet of my home, and the slow pace of doing what I felt like doing. How many of you would like to be doing that? I am driving the car and getting myself to places that I need to be, like the lab for tests on a regular basis.
I spent a good part of the day Friday (yesterday) in doctors' offices . Dr Wallentine was pleased with the report on my blood. I am climbing in all aspects; platelets and red blood cells are in the normal range and white blood cells continue to climb and are high enough that I can now roam where I want to and have family come by. In other words, I am out of isolation and can go out in public, using caution. Next Friday the doctor will do a bone marrow biopsy to get a look at what is really happening in the blood marrow. Good news.
Today I showed him a sore spot on my arm that looked like a blood clot to me and he decided to have me get an ultra sound of the veins and sure enough there were blood clots but blood was still able to flow through the vein. The final decision was that I needed to be on blood thinners for the next 6 months. So I had a shot in the belly, and then went to the pharmacy to buy some cumedin that I need to take every day. I was sent home with the shots for the belly for Saturday and Sunday that I would self administer and then would have to go back to the office on Monday for a blood test to see if the clotting mechanism was reducing. I also went to the chiropractor to see if I could get some relief from my neck and back pain (probably caused from being in bed too much the past month.)
I thought you might be interested in a "tender mercy" that happened in connection with this experience. When I had finished with the ultra sound, the technition told me it was really a good thing that I had the ultra sound when I did. She called my doctor to give him the results, and he asked that I come right up to his office while he and others decided what would be the best way to treat it. After a while the lab technition came out and called me back into the lab. She told me that the shots I needed were very expensive and not covered by insurance, but that a patient had brought in half a box of the syringes that she hadn't needed and asked that the lab give them to someone who needed them. So I was the lucky recipient. I was told to bring one of the syringes in on Saturday morning and another on Sunday morning at 8 a.m. and they would administer it. I said I didn't think it looked to hard to do, and why couldn't I self administer it. The nurse said if I felt comfortable doing it I could do it that way. So this morning I gave myself the shot, almost perfectly, and tomorrow am confident I will do it perfectly. Wasn't that a "tender mercy" to not have to pay for the shots? I hope that I won't need all of them so that I can turn some back in so someone else can benefit as I did.
I have come to expect that the road ahead for me will be filled with a few bumps so I don't get upset with things like blood clots. I am just glad that we are able to be led to get the bumps addressed before they are major problems.
I feel well, I feel optimistic, I feel loved and supported. Your prayers for me have lifted my spirits and have been answered in a marvelous way. I am so deeply grateful to all of you and for the constant assurance of the Spirit that all is well.
With much love,
Lulie
Wednesday, December 26, 2007
Yes, Lulie is Home...BUT
Lulie is home, however she is still very suseptible to infections. At this point she is not up for having visitors. Email and cards are the best way to convey your love, phone calls should be limited and short. She is still trying to rest and allow her body to heal. Please call me with any questions.
Jennie
Jennie
Christmas Eve
I just got back from the hospital. It is 9:00 on Christmas Eve
morning. Mom's ANC count was up to .8 so the doctor said she could
go home. Mom is feeling quite tired today. She didn't rest
yesterday afternoon but worked on her computer writing some letters
to people and then we kept her busy on Skype for most of the
evening. She had her first restless night last night. It seems like
it is really time to go rest in her own bed. I am getting Cami and
Ashlee to go with me to undecorate her room and haul out all the
"extras" we put in her room. Some of the nurses have volunteered to
help us. All the nurses that have worked with mom are excited that
"Lula Belle" gets to go home. I will let you know how tired mom is
and maybe make a suggestion or two about phone calls and visits after
we get her settled in. She does need to be up and moving to get her
energy back, but she also needs to be able to rest enough for the
same reason. She is feeling just fine about being home on Christmas
Eve and doesn't want anyone to worry about her or feel sorry for
her. I think she will probably sleep most of the afternoon, because
she really looked tired. I will spend the night with her and
Marshall and Nikki will stop by in the morning before they go to the
airport.
Valerie
morning. Mom's ANC count was up to .8 so the doctor said she could
go home. Mom is feeling quite tired today. She didn't rest
yesterday afternoon but worked on her computer writing some letters
to people and then we kept her busy on Skype for most of the
evening. She had her first restless night last night. It seems like
it is really time to go rest in her own bed. I am getting Cami and
Ashlee to go with me to undecorate her room and haul out all the
"extras" we put in her room. Some of the nurses have volunteered to
help us. All the nurses that have worked with mom are excited that
"Lula Belle" gets to go home. I will let you know how tired mom is
and maybe make a suggestion or two about phone calls and visits after
we get her settled in. She does need to be up and moving to get her
energy back, but she also needs to be able to rest enough for the
same reason. She is feeling just fine about being home on Christmas
Eve and doesn't want anyone to worry about her or feel sorry for
her. I think she will probably sleep most of the afternoon, because
she really looked tired. I will spend the night with her and
Marshall and Nikki will stop by in the morning before they go to the
airport.
Valerie
Friday, December 21, 2007
Yeah, Yippee, Hooray!
Mom's ANC count went up to .4 today. Yesterday it was .2. That is a
big jump in just one day. We are now back to where she was when she
came in the hospital. We are anticipating that her counts will
continue to climb rapidly. She has been trying to get up and walk a
lot, which is what the doctors have asked her to do. She is feeling
fairly sleepy in the morning and has enjoyed a couple of naps a day.
Dr. Wallentine told her this morning that she will continue to feel
fatigued when she goes home. She will need time to just recover from
the month long hospital stay, let alone what her body has been
through. If her counts keep going up she might be able to be home on
Monday. BUT we have learned to just take one day at a time.
Love, Valerie
big jump in just one day. We are now back to where she was when she
came in the hospital. We are anticipating that her counts will
continue to climb rapidly. She has been trying to get up and walk a
lot, which is what the doctors have asked her to do. She is feeling
fairly sleepy in the morning and has enjoyed a couple of naps a day.
Dr. Wallentine told her this morning that she will continue to feel
fatigued when she goes home. She will need time to just recover from
the month long hospital stay, let alone what her body has been
through. If her counts keep going up she might be able to be home on
Monday. BUT we have learned to just take one day at a time.
Love, Valerie
Wednesday, December 19, 2007
Long awaited update!
Dear Family,
It has been a long time since we have sent out an update on Lulie's progress so I will try to recap some of the recent events.
Mom is on her 27th day in the hospital.
She has had various infections crop up but they have been treated with a number of antibiotics and are remaining under control. A week or so ago, she developed a rash around her mid-section that was itchy and very sensitive to the touch. For a while they were thinking that she had developed a case of shingles, but the doctors now think it was an allergic reaction to one of the antibiotics. Mom has not had to have another picc line inserted, but the IV line in her left arm has been moved a few times. That arm has become very red, swollen and sore and the IV line was moved to her right arm. On Monday the 17th, she had an ultrasound of her left arm and discovered that she has two blood clots in her arm. The doctors don't seem to be overly worried about them but she is keeping heat on her arm most of the time. Today her arm is not quite as red and sore but it is still tight and swollen. She had a little fever spike on the 14th but it came down quickly. She has developed an infection called "enteroccus" which came from a bacteria that lives in the body, but in her case has moved to parts of the body where it shouldn't be. This infection is very resistant to most antibiotics and she is receiving one antibiotic that should control it, but we now have to gown when we go in to see her. That is so we don't get the infection ourselves and take it to other parts of the hospital.
Mom has been having increased nausea and has a hard time eating anything. Mealtimes are the hardest times of the day. She has been receiving IV nutrition for several days--amino acids and electrolites. Today she was given a new medicine by mouth (a little hard to swallow) called Meg-ace that is supposed to stimulate her appetite.
She has been feeling more tired over the past few days but yesterday (Tuesday the 18th) she received two units of red blood and another unit of platelets. The red blood has made her feel better. It bumped her hematocrit from 27.6 to 32. Her platelet count yesterday was 15 and now it is at 53. The other blood count that they are tracking every day and posting on her wipe board is the part of the white blood called Neutrophils. These are the white blood cells that fight infection. Since she has had the chemo, this reading has been at zero (.0) but on Monday this count finally made a little movement and went to .1. It has remained at .1 for three days and we are getting impatient for it to really get moving up. It needs to get up to 1.5 or 2.0 before she can leave the hospital.
Mom's hair has been falling out for a week or so and she is now wearing hats. She looks festive in her Santa hat.
Her room looks very Christmasy and everyone comments on it when they enter the room. Grandma's forest is getting bigger and looks really good on her red wall. She was so happy today to receive trees from the Thompsons, Stuart and Susanna, and Brooklynn and Emma. Grant explained to Grandma that his tree was an isosceles triangle and a square. :) Grandma loves her forest.
Things are going okay, but we need to cheer those Neutrophils on and get the count way up. Keep sending cards and emails. I'm sure I don't need to remind you to keep praying hard for our Mom and Grandma. She gets much comfort and strength from the love of her family.
It has been a long time since we have sent out an update on Lulie's progress so I will try to recap some of the recent events.
Mom is on her 27th day in the hospital.
She has had various infections crop up but they have been treated with a number of antibiotics and are remaining under control. A week or so ago, she developed a rash around her mid-section that was itchy and very sensitive to the touch. For a while they were thinking that she had developed a case of shingles, but the doctors now think it was an allergic reaction to one of the antibiotics. Mom has not had to have another picc line inserted, but the IV line in her left arm has been moved a few times. That arm has become very red, swollen and sore and the IV line was moved to her right arm. On Monday the 17th, she had an ultrasound of her left arm and discovered that she has two blood clots in her arm. The doctors don't seem to be overly worried about them but she is keeping heat on her arm most of the time. Today her arm is not quite as red and sore but it is still tight and swollen. She had a little fever spike on the 14th but it came down quickly. She has developed an infection called "enteroccus" which came from a bacteria that lives in the body, but in her case has moved to parts of the body where it shouldn't be. This infection is very resistant to most antibiotics and she is receiving one antibiotic that should control it, but we now have to gown when we go in to see her. That is so we don't get the infection ourselves and take it to other parts of the hospital.
Mom has been having increased nausea and has a hard time eating anything. Mealtimes are the hardest times of the day. She has been receiving IV nutrition for several days--amino acids and electrolites. Today she was given a new medicine by mouth (a little hard to swallow) called Meg-ace that is supposed to stimulate her appetite.
She has been feeling more tired over the past few days but yesterday (Tuesday the 18th) she received two units of red blood and another unit of platelets. The red blood has made her feel better. It bumped her hematocrit from 27.6 to 32. Her platelet count yesterday was 15 and now it is at 53. The other blood count that they are tracking every day and posting on her wipe board is the part of the white blood called Neutrophils. These are the white blood cells that fight infection. Since she has had the chemo, this reading has been at zero (.0) but on Monday this count finally made a little movement and went to .1. It has remained at .1 for three days and we are getting impatient for it to really get moving up. It needs to get up to 1.5 or 2.0 before she can leave the hospital.
Mom's hair has been falling out for a week or so and she is now wearing hats. She looks festive in her Santa hat.
Her room looks very Christmasy and everyone comments on it when they enter the room. Grandma's forest is getting bigger and looks really good on her red wall. She was so happy today to receive trees from the Thompsons, Stuart and Susanna, and Brooklynn and Emma. Grant explained to Grandma that his tree was an isosceles triangle and a square. :) Grandma loves her forest.
Things are going okay, but we need to cheer those Neutrophils on and get the count way up. Keep sending cards and emails. I'm sure I don't need to remind you to keep praying hard for our Mom and Grandma. She gets much comfort and strength from the love of her family.
Thursday, December 13, 2007
Date at the Hospital
Thought you all would be interested in this picture. Dad had a little date with mom last Friday. We sent them up with a computer and speakers so that they could watch a movie together. They had dinner together and watched "Seabiscuit".
Tuesday, December 4, 2007
Tuesday Morning Update
Dear Family,
I'm sure you are wondering how Grandma is doing today. I was at the hospital for several hours this morning and she was doing quite well. She had a little fever spike during the night, but it was treated quickly and her temp has stayed in the normal range. She is on three antibiotics and is being closely monitored for any further infection. She also was given an injection today of a drug that is supposed to help her bone marrow begin to produce blood cells again. Grandma loves all the things you send and also the emails.
Kathie
I'm sure you are wondering how Grandma is doing today. I was at the hospital for several hours this morning and she was doing quite well. She had a little fever spike during the night, but it was treated quickly and her temp has stayed in the normal range. She is on three antibiotics and is being closely monitored for any further infection. She also was given an injection today of a drug that is supposed to help her bone marrow begin to produce blood cells again. Grandma loves all the things you send and also the emails.
Kathie
Monday, December 3, 2007
Monday Evening Update
This morning Mom was feeling "normal" and looked good. She was scheduled to receive two units of blood and the new procedure is to pre-medicate Mom with Tylenol and Benadryl before she gets a transfusion. She received both units today and didn't have any trouble with them. She hasn't been able to eat a lot of the food they have been giving her--too much meat and foods that just don't taste good any more. She is slightly nauseous most of the time and doesn't like the sight or smell of some of these foods. Today the dietitian came up to talk with her about foods she could tolerate. She is now receiving a list of all the available foods for each day and she can order just the things that sound and taste good to her. One thing that she enjoys is chocolate milk and the dietitian suggested she might like milkshakes. That sounded good to Mom and they are a good thing for her to have because extra nutrients can be added to them. She had a chocolate milkshake at lunch and she enjoyed the whole thing.
At 2:00 this afternoon, Dr. Abolnik, an infection control doctor, came in. He confirmed that Mom has a serious blood infection--something like gram negative bascilli. He doubled the dose of antibiotic she has been on since last night and added two more antibiotics to treat the infection. Two of these are administered by IV and the other one comes in a pill. The doctor said he wanted the picc line removed so they could test it and make sure that there wasn't infection harboring in it and causing the infection in her blood. He also ordered an ultrasound of her heart to see if there is any infection there. The results of the ultrasound should come later tonight.
Mom has done well today--her vitals have been good and she hasn't run a fever or had chills. She went for a walk around the floor this morning and sat on the couch for a while. The Benadryl made her a bit tired but she couldn't take a nap because there was so much going on during the day. She finally nodded off late in the afternoon and was asleep when I left. She didn't get her second blood transfusion until this afternoon because the unit had to come from Salt Lake. The nurse said that as soon as it was finished, they would remove the picc line and insert a peripheral line for now. She will need to have a new picc line within a few days. Her infection is a serious thing but she is getting really good treatment for it and she still has a very positive and upbeat attitude. She enjoys receiving emails and feels strenghth and comfort from your faith and prayers.
Love, Kathie
At 2:00 this afternoon, Dr. Abolnik, an infection control doctor, came in. He confirmed that Mom has a serious blood infection--something like gram negative bascilli. He doubled the dose of antibiotic she has been on since last night and added two more antibiotics to treat the infection. Two of these are administered by IV and the other one comes in a pill. The doctor said he wanted the picc line removed so they could test it and make sure that there wasn't infection harboring in it and causing the infection in her blood. He also ordered an ultrasound of her heart to see if there is any infection there. The results of the ultrasound should come later tonight.
Mom has done well today--her vitals have been good and she hasn't run a fever or had chills. She went for a walk around the floor this morning and sat on the couch for a while. The Benadryl made her a bit tired but she couldn't take a nap because there was so much going on during the day. She finally nodded off late in the afternoon and was asleep when I left. She didn't get her second blood transfusion until this afternoon because the unit had to come from Salt Lake. The nurse said that as soon as it was finished, they would remove the picc line and insert a peripheral line for now. She will need to have a new picc line within a few days. Her infection is a serious thing but she is getting really good treatment for it and she still has a very positive and upbeat attitude. She enjoys receiving emails and feels strenghth and comfort from your faith and prayers.
Love, Kathie
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