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January, 2002 This web site is dedicated to helping everyone learn more about what a special girl Kacie is and to educate everyone about the disease that she is fighting.
Diagnosis and Beginnings
January 1, 2002 - Day +82 - Happy New Year!!!... Today starts a new year. We are hopeful that the year 2002 will bring a lot of happiness, joy, and health. Kacie still has a lot of recovery, and we are looking forward to every baby step that leads towards her complete health. It brings us a lot of joy to just see her smile, hear her giggle, and feel her arms around us as she wants to give us a big hug. We love to watch how Kacie wants to be just like her big sister, Erin. This morning Kacie tried to hug me real hard and I asked her if she wanted a hug. She told me that she wanted me to carry her. So I asked her where did she want me to carry her, and she said to the car. Kacie wants to go home really bad. She really started talking more today. It is still hard to understand her, but she is trying real hard. She was even trying to tell jokes to the doctors again. Kacie had a whole new team of doctors start their rotations today. The new attending physician specializes in Fanconi Anemia and works very closely with Dr. Wagner with this illness. It is difficult when new rotations start since you are just getting to know the team and then it is time for them to change to a new rotation. We’ve been in the hospital so long that we are starting to go back through the same doctors a second time. Kacie’s chest x-ray looked better again today. She is breathing on her own without any assistance with an oxygen mask. The doctors believe that her breathing sounds a lot better too. Her skin graft vs. host disease (gvhd) is also better. Before her skin looked as though it had been burned, now it is just a little red. Hopefully, the steroids are clearly it up. Kacie had dialysis again today. They were able to take off 1.5 kg. of fluid. However, her before dialysis weight and her after dialysis weight were the same. This was confusing to the dialysis specialist and we all thought that maybe Kacie’s bladder was holding fluid again. They decided to do a bladder scan to determine whether her bladder was full, but it showed very little fluid. The nurse tried to irrigate her bladder and was having problems, so they contacted the urologist. The urologist gave a few suggestions for irrigating and that seemed to work. Kacie had several blood clots come out and then she started feeling better again. Kacie is a miracle girl, and she still needs your prayers. She has a long recovery process before she can even get out of the hospital. We are thankful to everyone for the many prayers. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 2, 2002 - Day +83 - Bladder Pains Again... Kacie stayed awake almost all night. She was in a lot of pain from her bladder again. They decided to use the bladder scanner again this morning to determine if her bladder was full since she was in so much pain. It showed her bladder empty and when they tried to irrigate the bladder, they weren’t able to get any clots out. About 2:00 p.m. they turned down the irrigation that is continuously flushing Kacie’s bladder. Then at 5:00 p.m. they turned the continuous irrigation off all together. This is to help determine if her bladder and kidneys are working. Kacie had another dialysis treatment today. This time the technician was able to get 1.9 kg. of extra fluid off. Kacie is now before her initial weight of when she was admitted into the hospital. Since she is at her dry weight, they may decide to skip dialysis tomorrow. Kacie also complained of her head hurting again today. The doctors ordered a CT scan of her ventricles to make sure the ventricles or the shunt weren’t having problems. The radiologist resident read the CT scan and felt the ventricles looked good. We won’t have the final report until tomorrow morning when the radiologist comes in. It was a very long day because it is so difficult watching your child in so much pain. Especially since the bladder pain has been going on since day +5; which is a total of 78 days now. We just want to see her comfortable. They can continue to give her some heavy pain medication to mask the pain, but this doesn’t help in resolving whatever it is that is causing her so much pain. Hopefully, the doctors will be able to determine why she is having this pain. Please continue your prayers for Kacie. We really appreciate all of your continued support and prayers during these difficult times. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 3, 2002 - Day +84 - Good Morning Kacie... At 3:00 a.m. I heard a tiny little voice calling me. Kacie was wide- awake and talking up a storm. I thought if I kept quiet, she would go back to sleep. I was wrong. She continued to talk and call me. She wanted me to get in bed with her. So at 4:00 a.m., I crawled into bed with Kacie and we talked and talked until 5:30 a.m. She finally told me that I could get back in my bed so that I could get some sleep. Even though I was extremely tired, this was a special moment that I will always cherish. She was so precious as she lay there talking about anything that came to her mind. Kacie got to skip dialysis for today. Her weight had only gone up .9 kg. from yesterday, so they wanted to see how well she would do by skipping a treatment. The renal specialist decided to try giving Kacie estrogen and another medication, called ddavp, to help with bleeding within the bladder. Since Kacie is not producing platelets very well yet, the doctors believe these medications will help the platelets that she has to do their functions more efficiently. Kacie still had several bladder spasms. They were able to irrigate several more clots out. They have started a continuous bladder irrigation again, since she was still having difficulty without the flush. They did more ultrasounds of the bladder; which still showed clots at the bottom of the bladder. When Kacie had fluid in her lungs, they also had noticed fluid around her heart. So they did another ultrasound of her heart this evening. We probably won’t have the results until the morning. We celebrated Christmas some today. Kacie has a room full of presents and we had her open half of them today. This was great for occupational therapy. She sat up in her wheelchair for an hour while opening presents. This was also great therapy for her spirits. After occupational therapy, she had physical therapy, then speech therapy. It was a very busy afternoon. We have to pack everything in her room and take it all back to the apartment. They are planning on moving us out of Kacie’s room for one day while they completely scrub and disinfect her room, then we’ll move back. Since she has been here so long and she has been a very busy patient with ICU status, and all the many different equipment being brought in and out of her room, the cleaning staff haven’t been able to clean her room as well as they normally would. Kacie received several really neat PowerPuff Girl things, so when we move back in we may decorate the room with PowerPuff Girl items. We heard that it is snowing quite a bit in our hometown in Virginia. We understand the area received 10” or more. Everyone back home thought we would be seeing a lot of snow here in Minnesota by now, but SURPRISE, we believe they are getting our share. It has been cold here, but not as much snow as they usually have by this time. Pray for Kacie’s skin graft vs. host disease, her lungs, her heart, her brain, her nerves, her legs, her toes, her kidneys, and her bladder. She has several issues that are getting better, but she needs continued healing for a full recovery. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 4, 2002 - Day +85 - Agitated... Kacie was very agitated during the night last night. She kept pulling on her hickman catheter in her chest and her foley. She was itchy and very fidgety. She was also very emotional and didn’t want any of the nurses touching her to put her lotions on or taking her blood pressure or temperature. It made for a very long night. They finally gave her a medication to help her relax. She woke up in the same situation. She was also having a lot of pain in her toes again and didn’t want anyone touching them. Her bladder was still bothering her and she still was passing blood clots. They were able to pull off 1.7 kg. of fluid during dialysis today. The renal specialist mentioned that Kacie’s sodium level was low and he felt that may be why she is so fidgety and emotional. He also mentioned that the level of one of the antibiotics that she was on was to high; which may be causing her to be itchy. She stopped taking this antibiotic on Wednesday, but it takes time to get out of the body especially since the kidneys aren’t working properly. The infectious disease specialist that helped Kacie with the proper medications during the meningitis came up to see her today. She had heard that Kacie is having problems with her bladder and still has the BK virus that she had on day +5. She has a new drug that she would like to try on Kacie to help with the bladder problems. The only problem is she can’t try the drug until Kacie is off dialysis because it can cause kidney failure. Hopefully, Kacie’s bladder will continue to heal during the time that the kidneys are healing and she won’t need to try that drug, but if not it will be something that can be tried. Thank you once again for the many prayers. Please continue to keep Kacie in your prayers for a full recovery. We’ve now been in the hospital 92 days and it becomes very stressful. Please pray for us to have continued patience as she is going through this healing process. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 5, 2002 - Day +86 - Continued Agitation... Kacie had another day of agitation. She didn’t sleep all night even after they gave her some medication to relax her. She has a nurse sitter during the night, but that doesn’t help when she is as restless as she has been. She is still very itchy and irritable. They were able to pull off 1.2 kg. of fluid from dialysis today. She was so irritable during dialysis that she wouldn’t let them check her blood pressure, so they gave her medication to relax her. The neurologist came by to check on Kacie and we explained her irritability and the pain in her toes. He decided to start her on a nerve pain medication that is used on adults. It is a new medication, but he feels it will help her get more comfortable. The doctors also prescribed a sleeping aid so that she can start to get some rest. Hopefully, she will have a peaceful night tonight. We’re tired so our update is short for tonight. Kacie still needs your prayers. Please pray that she gets the proper amount of sleep that her body needs. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 6, 2002 - Day +87 - Wiggle, Wiggle, Wiggle Those Toes... Kacie had an excellent day!!! She started on a new medication for nerve pain last night and that seemed to help her relax. She didn’t even need the sleeping medication that they had prescribed. She slept through the night. It was the best sleep she has gotten in days. Her nurse was such an inspiration today. She came in early and gave Kacie her bath, put her lotions on, and dressed her. Then she helped me to sit her up in a chair. The nurse decided that she wanted Kacie up and she wanted to see Donald’s reaction when he entered the room. She was hoping it would bring tears, and it did. After seeing Kacie in bed suffering for so long, it was a real blessing to see her sitting up, eating breakfast, and very happy. When Donald came through the door, Kacie told him “I feel GREEEAAATTT!!!” This was wonderful having Kacie up and feeling good. She started complaining again that her toes were hurting real bad. Then she started getting irritable and agitated. The nurse decided to “give her a pedicure” by soaking her feet in warm soapy water and then using some of Kacie’s fancy lotions to rub her feet. This only helped a little. She was still in a lot of pain, so the doctor increased the nerve pain medication. That seemed to be the answer. When the neurologist came in, he asked Kacie to move her toes. She was able to wiggle all of them!!! It was hard to tell who was more excited in the room, the neurologist, the nurse, Donald, or myself! The neurologist again told us “I told you that I wasn’t going to let anything happen to my little girl!” It is wonderful to have someone care so much about Kacie to genuinely care about how she is progressing and to make such statements. We are hoping that we can start being aggressive with occupational and physical therapy again tomorrow. Kacie started eating today. She had a lot more than we had expected. This is also great news. She didn’t have dialysis today. Her creatine level was 1.4 this morning and 1.6 this evening. This is good because she usually is around 2.0 or above the morning after dialysis. Hopefully, this means her kidneys are starting to bounce back. All of these accomplishments are more miracles from God. All of your prayers are appreciated and we are seeing very positive results. We are so thankful to be a part of witnessing so many miracles. Please keep praying for more positive results. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 7, 2002 - Day +88 - Another Scare... Kacie had another very rough night. She had a lot of nerve pain, so they’ve decided to increase the amount of times that she can have the medication again. According to the neurologist, this pain is very excruciating. Kacie was up most of the night and even though she has a nurse sitter, she cries for me, so I’m up as well. We decided to go ahead and give her a bath real early and get her dressed. When Donald came in, he had a surprise. He wanted to take Kacie in the wheelchair to the lobby where they were giving free massages. He thought that I would love a message. I was extremely excited, especially since I hadn’t slept all night! Once we got down there, they were packing up so I didn’t get one. I guess we were just a little too late. She had dialysis and they were able to get off 2 kg. today. Her creatine is starting to look better also. Kacie’s eyes have been getting more yellowish and the doctors said that she is a little jaundice. The estrogen could cause her to be jaundice, so they stopped her last dose of estrogen. The rest of the day went fairly well. We have learned that even though she may be doing better one minute, the next minute may bring about additional challenges. Well, towards the evening Kacie spiked a 105° F fever. She was extremely irritable. Her stomach hurt, her toes hurt, her head hurt, and she just didn’t feel good at all. The doctor came in to examine her and was concerned about the high fever and the headaches. At first, Kacie wouldn’t move her head so we were all concerned about the meningitis again. Then Kacie vomited and after giving her several medications for pain and nausea, she felt better. The doctor was able to get her to move her head, so we felt a lot better. They also started her back on several antibiotics to help with the different types of infections that she has been known to have in the past. They also gave her some sleeping medications so that she can get a good night rest. She will have a nurse sitter again today, so hopefully I can get some rest as well. Please continue to pray for Kacie. She has multiple medical issues that will take time to heal. She needs continuous prayer and healing. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 8, 2002 - Day +89 - Showers... Kacie woke up bright and early at 3:00 a.m. She was wide-awake and talking to the nurse sitter. Finally around 4:00 a.m. I decided to get up. Because it was so early, I didn’t have to wait in line to take my shower. Then I climbed in bed with her and we watched “Home Alone 3”. We quickly got her bathed and then dressed her in a nice outfit. Her bladder had started bleeding again and causing her a lot of pain. We also noticed that she wasn’t draining from the bladder irrigation anymore. This means that her bladder is filling up and that could be why she is so uncomfortable. The urology resident had to irrigate Kacie’s bladder. It took 5 bottles of saline solution before he felt that he had gotten all the clots out. She had a lot of clots and once they got them out she felt better. When they tried to irrigate her bladder there was so much pressure that the tube came out and sprayed everyone. Oh, what a mess they had made. They had given her double doses of sedatives during the bladder irrigation. This really helped to relax her. As a matter of fact, it relaxed her so much that her blood pressure was staying low. Since she was on dialysis at the time, they needed her blood pressure to stay a little high. The dialysis nurse wasn’t able to pull off much fluid since her blood pressures were low. She even had to give her two bags of fresh frozen plasma to help increase the blood pressures. Kacie is having problems keeping her platelet count up. She also had to get red cells more than in the past. Kacie is now on five different antibiotics and her temperature has stayed down all day. The doctors are watching her chemistry levels very closely and changing medications accordingly. Unfortunately, Kacie wasn’t up to physical or occupational therapy. She was in too much pain and it was difficult with everything going on. We are praying for a peaceful evening. The doctors met with us today and explained that Kacie is a real miracle. She has been through a lot of difficult days and medical challenges, but has been blessed with miracle after miracle. They have written a plan for the nurses to follow concerning her bladder irrigation. This way the management of resolving Kacie’s hemorrhagic cystitis (bleeding in the bladder) is consistent. So far we’ve only been able to discuss short-term medical treatment. The attending physician hopes that we will be able to discuss long-term medical treatment within the next couple of weeks. We need to get past some of these medical hurdles first. Please pray for Kacie to have a better day tomorrow. Pray that this bladder issue starts to heal and show a lot of progress. Pray that the nerve pain is manageable. Pray that the kidneys and the liver start bouncing back. No miracle is too large for God and we are praying for a full recovery. The doctors have told us that most of her issues just will take time to heal. We keep praying for patience as we wait for her full recovery. Soon we will be rejoicing in happiness that we can’t describe or even imagine at this point. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 9, 2002 - Day +90 - Transfusion, Transfusions, & More Transfusions... Kacie stayed awake until 2:30 a.m. During dialysis yesterday she had problems with her blood pressure being low, so we wanted to wait until that was stable before giving her a sleeping aid. They constantly checked her blood pressure during the night to make sure it was stable. Kacie has gotten her appetite back. She was eating peanut butter and crackers in bed during the middle of the night. She wanted a cheeseburger and chicken nuggets for lunch. Kacie loves milk, so of course she is always asking for milk. She still had a lot of bleeding from the bladder. They have the bladder irrigation on a full continuous flow. The bladder will take time to heal and by keeping continuous fluid cycling through the bladder, it will hopefully keep any clots from forming. Kacie’s hemoglobin has been dropping lately, so she has to get more red blood transfusions. They have been giving her scheduled platelets twice a day and sometimes she still has to get an additional transfusion of platelets. Kacie didn’t have dialysis today; they plan to do it again tomorrow. Her bilirubin has been high, so they did an ultrasound of the liver today. We should get results later this evening or in the morning. They started her on a medication to help with the bilirubin level. Kacie always asks for a heated blanket. Not only can she persuade her daddy to get them for her, now she has the nurses getting them. The blanket warmer isn’t even on this unit. Kacie had speech therapy and her teacher also came by. This is great since she hasn’t had these services in quite a while. It is good that she can start to focus back on learning. Of course, she only can work a little at a time because it is so draining on her. Pray for brighter days ahead! We thank you for all your love, support, and many prayers. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 10, 2002 - Day +91 - Major Blood Clots Cause Of Exhausting Night... Adrenaline is important when you are sleep deprived. Kacie was up all night last night. Around midnight the nurse noticed that her bladder irrigation wasn’t flowing properly. She started pushing on the tube to try and get it to flow. It would start flowing but then slow down and then stop. Kacie woke up around 12:30 a.m. complaining that she needed to go to the bathroom. Her bladder had completely filled up and now she was in a lot of pain. The nurse and the charge nurse both started flushing Kacie’s catheter to get it flowing. It took two hours of constant push and pull with the syringe before they were able to get the first blood clot to come out. Then they continued to flush the bladder with manual irrigation until 5:30 a.m. and they were able to get a lot of clots out. Both nurses had really bad cramps in their hands from the constant manual irrigation. (We recommended to the doctors that they give them free hand massages.) They still couldn’t get it to flow properly. This made for a very exhausting evening. The hours just kept ticking by while Kacie was in lots of excruciating pain. Around 5:00 a.m. after Kacie had gone through so much, she gave me a really big hug and told me “I love you mommy, more than anything in the whole wide world”. This made it all the more worth staying up and supporting her through this difficult night. She is so precious to us and we would do anything for her. They had given Kacie a sleeping aid, plus she is on a continuous drip of pain medication, and she received three additional amounts of pain medications, and then a sedative. Even though she received all this medication, she still remained awake the entire evening. Around 7:20 a.m. the urology resident came in and irrigated with a different type of catheter and was able to get even more clots. Once he finished she started flowing properly and it finally turned from red to clear. Kacie was so exhausted from the evening so she slept most of today. She had her normal routine of physical therapy and occupational therapy. They also sent the family life representative in to talk with Kacie about some fun things that she would like to do. They will start working with her daily to allow her to choose fun activities that they can do together. This will hopefully boost her spirits. For our North Carolina readers: Kacie made the headlines in the Sanford newspaper. It is an article concerning one of the Vikings’ players (Waddell-#68) visiting Kacie in the hospital. His home-town is Sanford, North Carolina; which is where Kacie’s maternal grandparents and I (Kacie’s mom) are from. Kacie’s great-grandmother Mama Ruth (Ruth Bouwman) knows his grandmother very well. She said that the paper did a really good article on them. They also put a picture of Kacie with the Viking players in the paper. This is enough information for today’s journal entry. Kacie started on dialysis at 7:00 p.m. and it will run until 11:00 p.m. We need to get to bed as soon as possible to try and catch up on some much needed sleep. Please keep up the prayers! Thanks and God Bless! Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 11, 2002 - Day +92 - Laughter Is The Best Medicine... What a wonderful day! We have described this medical journey as a real roller coaster ride. Well, today Kacie did a loop-de-loop and giggled all the way. The thrill and excitement of finally going upward and doing a few twirls along the way is the best way to describe our emotions today. She was wide-awake at 2:30 a.m. so I crawled in bed with her for a couple of hours until she finally drifted back to sleep. As soon as we had woken up for the day we got her bath, weight, and lotions done. Then she had a nice breakfast. The dieticians have been sending Kacie three meals a day plus three snacks a day, so that she has a lot of choices on what she wants to eat. She has a great appetite, to include begging for peanut butter crackers, hamburgers, and chicken at 2:30 a.m. After we bathed Kacie, we were putting everything away and noticed that she had sat herself up in bed. This takes a lot of strength, especially since she has been in bed over ninety days. We are so proud of her. But our next surprise came when the neurologist came in to examine Kacie. She moved all of her toes!!! He told her to move them 100 times a day. Kacie thought he was fussing at her and was very upset when he left. We had to explain that he was so excited and he just wants her to keep trying to move them so that she gets better. She still had a lot of nerve pains in her toes today and the doctors decided to increase her nerve pain medication to four times a day. Kacie was able to skip dialysis again today. Her creatine level was at 1.3 this morning and at 1.5 tonight, which is better than what the levels have been. Her bilirubin level has also come down to a normal level. Kacie was very busy today. She had speech therapy, occupational therapy, and her teacher come. Kacie had Jason, from child family life, come to play with her. He brought a large container with a lot of different activities so that Kacie could choose what she wanted to do. This is a time where nobody is supposed to interrupt; it is a fun time for Kacie. Donald and I left the room so they could spend some fun time together. Jason said they had a great time! Next the physical therapist came in to work with her. She sat up on the side of the bed and all of a sudden she started laughing so hard that she fell over in the bed. We had Kacie sitting up in a chair most of the day. She was smiling, giggling, and laughing hysterically that everyone in the room could only laugh along with her. It is said, “laughter is the best medicine”, and we know Kacie had an overdose of laughter today. We are excited about seeing more days like today. Please keep praying! Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 12, 2002 - Day +93 - "Let's Dance!!!"... Kacie woke up around 4:30 a.m. and was starving. The nurse sitter fixed her two cups of tomato soup. Plus she snacked on some peanut butter crackers. Everyone was talking about how entertaining she was right after waking up. Several nurses kept coming in to visit with her. They thought she was so funny because she had lots and lots of energy. This is the way things ought to be with Kacie laughing and talking up a storm. She had an excellent day! Kacie asked us to get her up because she wanted to dance. Oh, the innocence of a child! She forgot that she hadn’t been able to barely move her feet and toes, much less stand on the floor, or even walk. At this moment in time, all she wanted to do was dance. Donald had put on Elvis CDs and Kacie was wiggling, clapping, and trying to dance in bed. She had so much excitement and we were thrilled with watching her. She has enough determination that it is possible she would have tried to dance if we had stood her on the floor. Believe me, the thought had crossed my mind. She was having so much fun every time someone would come into her room. She wanted everyone to join in our fun and dance to Elvis’ music. Her smile was from ear to ear. Kacie was so full of life and excitement. The nurses and doctors were overly impressed with her progress. Of course, we explained that this is the way Kacie really is all the time. This is how we want to see her. Kacie has always been very entertaining and she makes friends with everyone she meets. It is great to see her getting back to her old ways. We just wish that Erin were here to join in with her. We can only imagine the two of them carrying on again, laughing and giggling. It will be wonderful watching them play together and snuggle up on the couch watching movies. This is the kind of journal entry that I like writing. Good news and great progress! Not much to tell, other than Kacie did have dialysis again today. She had physical therapy, occupational therapy, and speech. All of these sessions went very well since she was rested and with lots of energy. The therapists were all real pleased with her today. Thanks for the many prayers. A lot of prayers have been for Kacie to start having better days, and we can honestly say that she had two excellent days back-to-back. Please continue to pray for Kacie’s full recovery. This is exciting! We wish that everyone could see her today. Hopefully, the joy that we are experiencing will shine through this journal entry and you will be able to feel some of our excitement. Praise God! Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 13, 2002 - Day +94 - Stronger By The Day... I’ve never viewed myself as a writer; as a matter of fact, I’ve never liked to write that much. But I’m thankful that we started this journal because all the many events have started becoming a blur. I’ve also kept some personal journal information for which I’m thankful. We begin to only think of the current day and the future. One day we may actually write a book about the untold details of Kacie’s miracles and the many emotions that we experienced. As we reflect on all the days past while Kacie was going through the transplant, we realize it was a burden that we couldn’t have carried without God’s help. We are extremely blessed and grateful to have so many people following Kacie’s story and to be touched by the many events. God has his hand in this whole journey. Kacie had another marvelous day! Of course, she was awake in the middle of the night craving snacks and wanting to play. Her sleeping schedule is all out of whack. We were fortunate that Erin and Kacie both slept through the night as little infants. I guess this is our turn for learning how to cope with sleepless nights. Now, we can appreciate new parents when they talk about little to no sleep. Luckily, Kacie took a nap in the middle of the day so we both got a little rest. She appears to be trying very hard to show us how strong she is getting. She sat herself up in bed today and told us, “I’m just chillin”. The physical therapist and I played a game of monopoly with Kacie. She has wanted to play monopoly for a long time. It is amazing to watch her play a game that is sort of complex when she is still trying to learn how to do simple things; such as sit up, feed herself, read, etc. Kacie was able to feed herself today. There are so many things that we use to take for granted, but when faced with situations such as what she has been through, we realize that she has to gain a lot of strength and learn a lot of things all over again. Kacie has the determination to win this medical challenge! Everyday we can see the extra effort she puts forth. She is on a mission to get out of the hospital and she is working hard towards reaching that goal. We are extremely proud of her! We did have some bladder irrigation challenges this morning. The last few days, the irrigation has been clear. Well, this morning after waking up I noticed it was not draining very well and it was a light red. After careful examination, I noticed that someone had turned the irrigation level down almost to close when it should have been fully opened. I had the nurse open the valve and it still wasn’t draining well, so they ended up flushing the bladder. They only got a few blood clots out, but at least it started draining well again. Later in the day we noticed a large blood clot coming through the tube. It appears that her bladder still wants to bleed as it tries to heal. The doctors are discussing whether they should try to inject a medication through the irrigation that should help heal the bladder wall. She is confined to her room until the bladder irrigation can be turned off. There are five large bags that are continuously flowing into her bladder. That is approximately 3000cc per bag and the five bags are changed about every 2 hours. The last few days, Kacie has spiked a low fever on and off. Hopefully, this isn’t the sign of any additional infections. Her skin graft vs. host disease looks a whole lot better. She is still on the steroid lotions and steroid medications. That is probably why she has such a large appetite. Even though it was the weekend, Kacie still had a very busy schedule. I mentioned physical therapy coming, but she also had speech therapy. The speech therapist worked on idioms with her. This is one area that has always been difficult for Kacie, so they are trying to really help with the concept of idioms. Here is an example: “It is raining cats and dogs”. No really, here in Minnesota “It is snowing cats and dogs”; meaning it is snowing really hard here. It started this morning then it lightened; now it has started snowing very hard. We had Kacie sitting in a chair most of the day. We read books, told stories, watched movies, ate, and just talked. Oh, I almost forgot to say that we giggled and giggled. It is wonderful to see her childlike spirit and the joy that she brings to everyone that walks into her room. She didn’t have dialysis so that made it easier to spend more quality time together doing some things that she enjoys. We tried to get her to wiggle her toes, but the pain is so excruciating even with medication, that she still isn’t able to move them much. She is trying though. Our hearts are filled with so much joy as we are witness to watching our daughter recover from not only a serious and very rare illness, but to watch how many lives are effected by her miraculous recoveries. We also appreciate the courage and strength that Erin has endured during the hardest events of her life. Erin has endured more than most people will ever have to endure within their entire life. We are very proud of both of our girls! Thank you once again for the many kind words, letters of encouragement, surprise packages, thoughts, support, and especially the prayers. We really couldn’t handle all of this without all of you. You have given us strength through your prayers to keep our minds focused and our faith strong. Most importantly, we thank God the Almighty for the many miraculous days that we’ve experienced! We look forward to the day when our family can be back together in Virginia. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 14, 2002 - Day +95 - Standing Tall... How do you describe a day as miraculous as we had today? Filled with laughter and joy. How do you describe the feelings that go through your mind and heart as you see a miracle unfold before your eyes? To put simple words to our thoughts and feelings would not be adequate in describing our true emotions. I’m not even sure we know how to describe them ourselves. Kacie stood up today for the first time in over ninety days! To look at the joy on her face as she made such an accomplishment. Several of the nurses came in just so they could witness this great event. Her physical therapist was so excited at Kacie’s determination. We’ve all been praying for this day and it is finally here. Donald bent down on his knees while Kacie held onto his neck and stood up. We had Elvis music playing so what a perfect time to have a slow dance. This moment only lasted for seconds, but it will remain in our hearts forever. Everyone was cheering and Kacie was so happy. Kacie had dialysis today. The renal doctors decided that they wanted her to go to the dialysis center rather than having it in her room. Normally, we would love a chance to get out of the room for several hours; however, Kacie is still on continuous bladder irrigation. This meant that we would have to empty her drainage bag about every 30 minutes. She also had a difficult time with the dialysis. They were trying to pull off 3.7 kg. of fluid, yet this seemed to cause Kacie’s blood pressure to drop and she started vomiting. They had to slow down the rate of pulling fluid off and they even had to stop pulling any more off. The dialysis nurse was only able to net 2.5 kg. We were at the dialysis center for five hours. Even though Kacie was at dialysis most of the day, several of her therapists found her and still worked with her. The occupational therapist played cards with Kacie to help with her matching skills. The speech therapist worked with her on relational pictures and retaining information skills. Then Kacie taught the speech therapist how to count to ten in Japanese. Kacie had learned to count in Japanese while taking karate lessons. It was exciting watching her teach someone else, especially since she was able to remember how to count herself. We almost forgot to mention that Kacie slept through the night last night until 8:00 a.m. She wasn’t able to get any naps today, so she finally dozed off around 5:00 p.m. We still have to take her down for a CT scan of her sinus, mastoid, and lungs. So maybe she will wake up for a bit and sleep through the night again. It is good to be able to get some sleep. One of Kacie’s first residents, Mary, came by to visit. She really thinks Kacie has made a lot of improvements. She hadn’t seen her for over a month. It was great to see her again. Mary was the resident when Kacie first came into the hospital and during the time she was diagnosed with meningitis. Mary is an excellent resident and we know she will make a great physician someday. She really cares about all of these children and it shows in her bedside manners, not to mention that her skills are excellent as well. Please continue to pray for Kacie’s full recovery. Each and every day brings additional joy to our hearts as we watch her recover from some very serious conditions. We are blessed far beyond our imaginations. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 15, 2002 - Day +96 - Busy Schedule... Each day brings great moments that will forever remain in our minds and hearts. Kacie just brightens our days and nights with her fun loving self. They call her room the “party” room. She makes everyone laugh when they enter and she even has some of them dancing! There is so much support among all the parents that are here with their children having transplants. Everyone is always so caring and supportive. Several of them were outside Kacie’s room watching her through the window. They are so excited to see Kacie doing much better. It’s wonderful to see everyone cheering her on. We had to take everything out of our room today so that the cleaning crew could do a thorough cleaning. We’ve been in the room for 103 days and there has always been a lot of medical equipment, so they wanted to give it a really good cleaning. Even though we have everything pretty much organized into containers, we still had quite a bit of stuff to move back to the apartment. While we are at dialysis tomorrow, they will come in and scrub the bathroom and the walls, and they will strip the floor and then wax it. They offered to repaint the walls, but that would require us to have to move to another room temporarily and all the rooms are full again. Kacie got a loud chuckle when I tried to move her from the wheelchair to her bed and her irrigation bag broke. Well, let’s just say mom took a bath, not to mention the nurse also got a bath. Kacie laughed so loud that it was hilarious. This isn’t the first time that our room was sprayed. Our schedule is filled with helping to change irrigation bags, bathing Kacie, putting lotions on three times a day, changing her hickman dressings, helping with mouth-care, and lots of medications. Not to mention taking her for any CT scans, MRIs, physical and occupational therapy, reviewing her chemistry and labs, meeting with different doctors, and just plain having fun with Kacie every free moment. Kacie didn’t have dialysis today; she will have it again tomorrow. We did take her down to the physical/occupational therapist room. She stood four times while holding on to us. This is very difficult for Kacie since she has lost all muscle tone in her calves, plus she still has a lot of nerve pain in her legs, feet, and toes. She wore her new leg braces with smiley faces. She played matching games with the occupational therapist while the physical therapist stretched her legs. Then the speech therapist came in and worked with Kacie on some memorization and recognition skills. When Kacie got back to her room, she was exhausted. She fell asleep around 2:00 p.m. until 8:30 p.m. Her toes were hurting her and she kept asking for more pain medication. She may have overdone it! Hopefully, she will still sleep through the night tonight. Kacie will be having a bone marrow aspiration on Friday (day +99). It is hard to believe we are already at day +100. She will be put to sleep, but they may be able to do the procedure in her room. Please pray that her donor status is still at 100% and that her cellularity has increased. We love and miss Erin very much and every night we call her. Tonight she was so excited to hear that Kacie has been trying to stand up. She is also excited because she has gotten her airline tickets to come visit in February. She is already counting the days. Erin makes us proud, especially with all the extra effort she is putting into her schoolwork. Please continue to pray for great days for Kacie. We are grateful for the wonderful days that Kacie has been having lately. She is healing each and every day. Thanks many times over for your love, care, support, and prayers! Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 16, 2002 - Day +97 - Splish, Splash, We Were Taking A Bath... Kacie must have been really tired yesterday because she slept from 2:00 p.m. until 8:30 p.m. last night and then went back to sleep around 10:00 p.m. until this morning at 6:00 a.m. When she woke up she was asking for some soup. Kacie has really been eating a lot of soup lately. We probably should stock up with several cans since she always wakes up asking for soup, even at 2:00 a.m. Kacie was scheduled for dialysis first thing this morning. We had to go to the dialysis room. They pulled off 2.4 kg. of fluid. The renal doctor has started a new medication that will aid the bone marrow to produce more red blood cells. The kidneys normally produce a certain hormone that helps stimulate the growth of red blood cells in the bone marrow. Since she had kidney failure, this hormone is not being produced, thus needing this medication. The renal doctor has decided to only do dialysis every other day to allow the kidneys to try and jump-start them again. Then she was scheduled to go over for a CT scan of the mastoids and ventricles. We should get the results in the morning. We had a little accident today. The man from transportation accidentally dropped her IV pole that was carrying all her irrigation bags. We had a big spray! There were six large bags that fell and sprayed everywhere. We all got soaked, to include getting the solution in my eyes. The irrigation is a saline solution mixed with medication that contains acid. I knew that I should immediately wash my eyes, so I ran around the corner to find a sink. Then when we got to CT, I washed my eyes again and flushed them with saline. My eyes felt fine after washing them but the nurse manager found out about the accident and had me seen by a doctor in the emergency room. They treated me for mild chemical conjunctivitis. Notice that it ends in “itis”. We’ve learned about to many medical conditions that end in “itis”. Anyway, I’m fine, my eyesight is perfect, and they just asked me to watch for burning or redness and they prescribed eye-drops. We are so thankful that the IV pole didn’t hit Kacie in the head, that the solution didn’t get in her face, and that the foley didn’t come out. We would’ve had a horrible situation. While we were out of our room, the cleaning crew striped and waxed the floors, cleaned the walls, and scrubbed the bathroom. It is nice to have everything cleaned. We are very tired from our adventurous trip today, so we are trying to get to bed early. Tomorrow Kacie is scheduled to go to the physical/occupational therapy room, so it will be another busy day. God is working miracles on Kacie every day! Please continue the prayers. Especially pray that Kacie’s white blood count will go up. Her white count has dropped to 1700 today. Normal white blood count is 4000 to 14000. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 17, 2002 - Day +98 - Strengthen Those Legs... Good morning! Kacie woke up in great spirits, full of laughter and determination. She is working so hard to get better because she is ready to get “outta here”. She still has a lot of recovery and rehabilitation, but it is wonderful to see her determination to fight hard so she can hurry the process along. Kacie spent an hour and a half in the physical/occupational therapy room. They brought in a small walker to help her with balancing so that she can stand. She did this four times and we all counted to ten (in Japanese since Kacie has been teaching everyone how to count in Japanese). Twice she stood without needing much help with the therapist holding on to her. We really cheered her on. It was very painful for her because she has lost most all of her muscle tone in her legs. However, the joy and excitement that she had afterwards was priceless! This is such a great accomplishment. The speech therapist worked with Kacie while she was still in the physical/occupational therapy room. This was a lot of fun because Kacie sat in a tire swing while doing her speech lesson. The therapist started to read an “Amelia Badilia” book to Kacie, but Kacie asked if she could read every other page to the teacher. This was great, again she is so determined to do things for herself. It was wonderful hearing her read again. Kacie’s white blood count did start to rise again today. She went from 1700 yesterday to 2100 today. It still is lower than normal, but we are thankful for the increase. She didn’t have to have a red blood transfusion today, since her hemoglobin is at 11 and her parameter is 10. Maybe the new medication that the renal doctor started her on yesterday is starting to help with production of red cells. Her platelets still continue to drop below her parameter of 75,000, so she is getting platelets on average of twice a day. Her phosphorous level is high, so the renal doctor has started another medication with calcium to help manage the phosphorous level. The doctors also determined they could stop the TPN (which is IV nutrition) since Kacie is eating well. She has been gaining too much fluid in between each of her dialysis treatments, so they felt the extra TPN fluid was causing her to gain. Each of these small steps is leading Kacie towards full recovery. We are grateful and encouraged each day to watch her progress. It is even more gratifying to see the look on her face when she notices her own improvements. Molly brought us a large dish of homemade lasagna. It was a nice surprise, especially since we were just talking about lasagna earlier in the day and Kacie asked if I could make her some. Kacie ate a whole serving and loved it. Molly bought one of the “Smiles & Giggles” cookbooks and told Kacie she is trying out a recipe for chicken nuggets and will bring them to her tomorrow. The “Smiles & Giggles” cookbook is a fundraiser that was put together by Kacie’s grandmother, Grandma Honey (Jeanette George) and includes recipes from a lot of friends and family. Each recipe was selected based on whether kids would like it. John Henry Printing was gracious in donating the materials and time for printing and binding all the cookbooks. Thanks! We’ll provide ordering information on the website soon. Please continue the many prayers for Kacie. Please also pray for all the other children on this unit and others that are battling serious illnesses. Please pray for Andrea and her family. Andrea has been on a ventilator and oscillator for a long time and needs to start breathing on her own. Please pray for Alexis, she has been admitted back into the hospital for more complications. Please pray for Elliott, he started dialysis yesterday due to fluid retention. Please pray for Connor’s continued progress. Please pray for Caleb and his family. Caleb also has Fanconi Anemia and is due to go back home this week, but unfortunately he keeps spiking fevers and has been readmitted into the hospital. Please also pray for all the other children. Our list of children needing prayer and special healing is quite lengthy. Please pray for each one of them, even those we didn’t mention at this time. All of these children weigh heavy on our hearts. The love and support that each of there families have shown to us is incredible considering every one here is going through their own trials and challenges. We are extremely blessed to have so many people praying for Kacie’s recovery. We are looking forward to the day when we hear that we can come home. This journey is lasting longer than we ever anticipated. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 18, 2002 - Day +99 - Laughter Makes For A Quicker Recovery... Another great day! Lately, we have enjoyed updating the journal pages since Kacie has been making really good progress. They only took off .6 kg. of fluid today with dialysis. The renal doctor believes that her kidneys are starting to function more since she is not gaining as much fluid in between dialysis runs. We are hopeful that she won’t have to be on dialysis much longer. Kacie woke up at 5:00 a.m. because her bladder irrigation was not flowing. I was able to manipulate the foley tube and several clots came through. The irrigation had been clear, but several times today it had turned red from bleeding within the bladder. The doctors still believe that it is much better than it had been and they basically feel it will just be a matter of time before the hemorrhagic cystitis clears up. Kacie’s white blood count went up a little again today to 2400. Each day it is increasing so that is good news. She is doing really well with her nutrition. She has been eating around 800 calories a day. The nutritionist wants her to try and eat as much as 1200 calories a day. Kacie has been eating really good food, and mostly wants soups. We are watching “America’s Funniest Videos” and are laughing hysterically. It is a lot of fun to be able to enjoy good laughs together. Thank you for the many prayers. Please continue to pray that Kacie has more and more great days leading to her full recovery. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 19, 2002 - Day +100 - Many Blessings To Day +100!... Most people think of days, weeks, months, and years when thinking of a calendar. After spending so much time in the hospital, relying on moment by moment, we decided to throw out the traditional calendar and focus on each moment. Today is a special day because it is day +100; which means it is 100 days after Kacie’s bone marrow transplant day. Normally, this is the time when most people would be making plans to return back to their homes. However, we are just thankful that Kacie is doing much better. We will continue to count each moment as a blessing and soon Kacie will be doing well enough to where we will be able to make the plans to leave the hospital and return home. We can hardly wait. It is so exciting watching her progress and knowing that she has been blessed in numerous ways. Donald, Kacie, and Kate Montgomery (our care-partner) decided that I needed a day out. Kate took me to a hair salon and treated me to a hair cut, style, and a manicure. We also enjoyed lunch together and did a little shopping. Kacie needed some knee-high socks, to wear with her leg braces, since she is starting to stand up more. It is great that Kacie has been doing a little better, so that I felt more comfortable leaving her for a few hours. Donald spent the day with her and they had a great time. The renal doctor still feels that Kacie’s kidneys are trying to work, so he is starting her back on a diuretic to help keep fluid off. All the doctors feel that she is showing good progress. Her bladder is still bleeding occasionally even with the new medication that is in the irrigation solution. Hopefully, the bladder and kidneys will heal quickly so that we can get more aggressive with strengthening her legs and she can start standing and walking again. Donald and the physical therapist worked with Kacie to help her stand up again today. Each day she seems to get a little bit stronger. She also worked with occupational therapy and speech therapy today. Once I got back she was exhausted and was taking a nap. During your prayers, please help us in thanking God for his many blessings that he has sent to Kacie. She still needs more healing; however, we are very thankful in her progress thus far and know that God is still working on her full recovery. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 20, 2002 - Day +101 - Baby Steps... Some awesome news!!! Kacie had physical therapy with a therapist that she hadn’t met before. He wanted to have her stretch the muscles in her legs and feet; however, Kacie didn’t want too. We decided to give her a choice, either she could do stretches or she could try to stand again. Well, Kacie decided to try to stand. We only gave her a little bit of help, but mostly she was standing on her own. Then we asked if she would like to try and walk, with our help, to get to the chair. She took four steps!!! Of course, we were holding onto her. She was so excited and everyone was cheering her on! We had so much excitement in our room that people in the hallway was wondering what was happening. These are just baby steps leading to stronger steps. We were so happy, probably more so than when she was a small baby first learning to walk. To watch her determination and excitement as she struggled to take the first step was indescribable. Kacie works extremely hard, her goal is to hurry and get out of the hospital. More awesome news!!! The renal doctor feels that Kacie may not need dialysis anymore. He believes that her kidneys are trying to work, so they will continue to monitor her progress. They are giving her a diuretic to help the kidneys. They also have to watch all of her electrolytes. Her sodium levels were high today, which caused her to be dizzy, confused, and have a loss of appetite. The doctors will be monitoring her fluid intake real close so they can manage her sodium levels. Please keep praying for her progress. Our prayers are being answered one by one. Soon we will be rejoicing at her total recovery. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 21, 2002 - Day +102 - Bone Marrow Biopsy... Kacie had a bone marrow biopsy today at 11:30 a.m. Even though they put her to sleep, they allowed me to stay in the room with her during the procedure. She was very upset because she didn’t want to go to sleep. She’s probably starting to understand that every time they put her to sleep, she has a medical procedure done. She did really well during the procedure. After she woke up, her hip area was very sore. The bone marrow biopsy results will take several days. There are a few different results that we will be waiting on. They check to determine how much of the bone marrow is from the donor. The last two tests results showed 100%, so we are expecting the same results. They also test for cellularity, and the last results showed 5%, and we are praying for an increase in the cellularity results. Some of the results will be back in the next couple of days, but the other results will take over a week. She missed physical therapy because of the bone marrow biopsy. Kacie worked with the occupational therapist and also with the speech therapist. We were going to have her stand, but her hip was too sore. The renal doctor came by and made the decision that Kacie doesn’t need dialysis anymore. Her attending physicians will continue to monitor her progress and as long as she is doing better, she won’t need the dialysis. The doctors believe that her kidneys are starting to work and it will just take time before they are fully functional. We forgot to mention in yesterday’s journal entry that Kacie has a yeast infection in her throat. She had yeast infections before, but this is a different type. The medication she is currently taking is only 50% effective; which means that it may not get rid of the infection. They may have to test other medicines for sensitivity levels and then change the antibiotic that she is taking. Please continue your prayers for Kacie. Thank you for all your love and support. We greatly appreciate knowing that so many people truly care and are following Kacie’s progress. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 22, 2002 - Day +103 - Miracles Needed on 4A... Kacie’s temperature went up to 100.5° F at around 3:30 a.m., plus her blood pressure had gone up as well. Of course, they will be culturing her blood to make sure there aren’t any new infections. Around 4:00 a.m. she woke me up either confused or she was dreaming. She was upset because she couldn’t find her seatbelt. She was probably just dreaming about getting out of here. After she woke up her temperature and blood pressure remained normal for the rest of the day. She didn’t have any more episodes of confusion, so the doctors feel that the earlier episode was probably just a dream. With everything that she has been through, we can’t be too careful and the doctors have to be cautious. Kacie had to get GCSF (growth factor for white blood cells) since her white blood count and ANC (absolute neutrophil count) were below the recommended level. Her ANC was 800 yesterday and they want it to remain above 1000, today it went up to 1100. We received some of the lab results back from the bone marrow biopsy. Kacie is still only at 5% cellularity; which is where she was at day +60, but the doctors said they now see red blood cells as well as white blood cells. They believe she is only at 5% because of all the other illnesses and infections that she had to fight off. Kacie had a pretty good day again today. Her hip was still sore from the biopsy, so she had a difficult time sitting up. She did take six steps with our help. We are so proud of her for trying so hard. All of the families here are like a special extended family. Last night several of us stood in the hallway and prayed for the health and recovery of each of these children. There is a special little girl, named Alexis, that needs prayer and a real miracle. Her mother, Jodi, has been with her in Minnesota for a year and she just found out that Alexis is struggling with a very bad fungal infection throughout her body. Her husband and other two children will be coming from Kansas to be with them. Please keep Alexis and her family in your prayers. It is so difficult going through the emotional ups and downs and even though we all try to lean on each other, it is so hard watching these children go through these many medical challenges. Please pray that the angels are with all of the children on unit 4A. We need God to heal these special children and let all of them return home to their families. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 23, 2002 - Day +104 - Bladder Problems... Kacie is having problems with her bladder again. When I woke up I noticed Kacie’s bladder was bleeding again. It continued to bleed for at lease an hour and a half. Then it started to clear some, but for the most part she had bleeding on and off for most of the day. There were a lot of blood clots as well. We’ve had to manipulate the foley tube just to get the clots out. We were hoping that the hemorrhagic cystitis (bleeding in the bladder) was almost over. According to the doctors it is very difficult to treat and it just takes time for it to heal. I guess we will just have to have more patience. Her temperature was up a couple times today. It got up to 101.7° F so they cultured her blood again. So far there is nothing growing from the cultures. The latest throat culture did not show the yeast infection, so hopefully that has cleared up. Since Kacie is now past the 100-day mark, there were several tests that were ordered as part of the protocol. Today she had a chest x-ray and then some pulmonary tests done. We should hear the results on these tests tomorrow. Then they tried to do an eye test where they stick a strip of special paper in between her eye and eyelid to determine whether she has a chronic case of graft vs. host disease. They weren’t successful in getting her to do this test, so the doctors decided to cancel the test. A lot of children have a difficult time with this test so it is not unusual for them not to get a test done. Even though Kacie had a busy day with all the additional tests, she still had physical therapy and occupational therapy. She actually stood up and only held our hands for balance. She is getting much stronger. Tomorrow the physical therapist wants to have Kacie come to their area and try to ride something like a big-wheel or small bike. These may sound like small achievements, but to us they are major accomplishments. Kacie has to gain a lot of strength and relearn how to do a lot of things. She is doing remarkable! Dr. Wagner, Kacie’s primary physician, stopped by last night to visit. He is the fanconi specialist and he was the one who diagnosed Kacie’s bacterial spinal meningitis. He has been in clinic and also at a lot of major meetings. We discussed some of our concerns about her blood counts and he said that he would review her latest records. He discussed with the attending physician that he wants Kacie to receive GCSF (growth factor for white blood cells) anytime her ANC (absolute neutriphil count) is under 2000. He tends to be more aggressive in his approach to treating issues and he believes that Kacie’s ANC needs to be higher, thus her white blood count will be higher and can help fight off infections. We greatly value Dr. Wagner’s expertise in treating symptoms, especially how they relate to fanconi patients. Kacie still needs your prayers. She has made a lot of definite improvements; however, she still has several medical challenges that need resolving. There have been so many miracles and we know she will continue to get better until she is totally healed. Thank you for all of your prayers. Please continue to pray for Kacie and all the other children that are fighting major illnesses. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 24, 2002 - Day +105 - High Fevers...Another Infection?... Kacie had fevers during the night last night. She woke up with a high fever and was vomiting. She had to retake all of her 8:00 a.m. oral medications since she had gotten sick. It was 11:00 a.m. before she finally was able to take the 8:00 medicines. Her temperature had climbed up to 104.6° F and she had the chills and a lot of confusion. The doctors came in to examine her and felt that she may have a bacterial infection in the bloodstream. They had started her on some stronger antibiotics last night since she had a high temperature then. They are culturing her blood to determine if there is any evidence of a bacterial infection. They scheduled her for a chest x-ray to make sure they don’t see infection in the lungs. It is possible that the foley catheter may be causing Kacie to have an infection, so they are going to change the catheter tonight. She still has bleeding from the bladder and several blood clots. They tried to get a urine sample to culture; of course the sample is diluted because of the bladder irrigation. They will continue the bladder irrigation until the hemorrhagic cystitis clears up. When I changed Kacie’s hickman catheter in her chest, I noticed there was pus around the opening. The doctor took a sample to send for a culture. He felt that this might be the source for her infection. It was a difficult day dealing with yet another medical challenge. Hopefully, she will start feeling better and the antibiotics will help to get rid of whatever infection she may have. Please pray that Kacie will start feeling better and will be infection free. Pray for all the children fighting serious illnesses. Please pray for a special family, Tom & Jodi Wiggins and their children, to give them comfort and strength. Their two-year old daughter, Alexis, went to be with the Lord after being in Minnesota for a year dealing with a very serious illness. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 25, 2002 - Day +106 - Lights...Cameras...Action! Thankfully, Kacie woke up feeling better today. She slept through the night and her temperatures have been down. She had a much better day today. Kacie was chosen to be a “movie star” today! The hospital is putting together their annual report that is published in a booklet. This booklet is sent to various other hospitals and insurance agencies across the country. They took quite a few pictures of Kacie with the child family life specialist, Jason. She was playing with a doll named J.R. The doll is designed to teach children how a hickman catheter works, how to give medications, how to take blood, and how to do mouth care. We had to sign a “movie star” release form so that they could use her pictures. She had a great time playing with J.R., plus she had the most gorgeous smile to where her dimple would show. They thought she made the perfect model. Kacie’s white blood count (WBC) and absolute neutriphil count (ANC) came up some today. Her WBC was 1500 and her ANC was 1100. They will continue to give her the GCSF (growth factor for white blood cells) until she has three consecutive days with the ANC over 2500. The physical therapist brought in a device that we call the pony. It has a pony on the side of it and it is designed for Kacie to have support while trying to learn to walk again. It has handlebars for her to hold onto, a seat in case she can’t stand long, and rollers on the bottom to help her glide easily. Today we just spent time adjusting it to fit her properly. Because she has a foley catheter in, it is painful for her to sit on the seat. She played the games Mastermind and Mancala with the speech therapist. These are excellent games in utilizing a lot of dexterity, skill, and strategy. Kacie always loves to play these games and she is very good at both of them. The occupational therapist and her schoolteacher also worked with her today. Kacie had nausea today, but we believe it is due to some of the new oral medications that she has to take. They are changing several of her medications from IV form to oral. This is a good sign, since they need the children on oral medications when they are discharged from the hospital. So far all the recent cultures haven’t shown any bacterial infections. Hopefully the antibiotics that she is currently taking have been fighting off any new infections. Please continue praying for Kacie’s recovery, and many thanks for your continuous support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 26, 2002 - Day +107 - Determination... Kacie had a very peaceful night last night. She woke up at 8:00 a.m. just in time to start taking her oral medications. I quickly gave her a bath and put her steroid lotions on so that she could feel better and get started on having a good day. She wasn’t very hungry for breakfast though. She was nauseated until around 11:00 a.m. She had physical therapy, but she didn’t feel up to getting out of bed at that time, so the therapist worked with stretching her legs. Then the occupational therapist had her working with mazes and played with a matching abstract game. By the time the speech therapist had come, Kacie was feeling better and they were able to do several worksheets and then play some card games. Once Kacie started feeling better, she really picked up an appetite. She ate small portions of food, but would constantly asking for something else to eat. We even decided to have a pizza party at the end of the night. Kacie’s white blood count went up to 2200 and the ANC stayed the same as yesterday at 1100. She is still getting GCSF (growth factor for white blood cells). Hopefully, these numbers will start increasing. Her temperature and blood pressure have remained normal. And her bladder was much better today; we didn’t notice any blood clots or active bleeding. Kacie and the doctors decided that she would need to work on six things in order to get healthy and get out of the hospital. They decided that she needs to eat more, drink more, take all her oral medications, stand, walk, and smile. Kacie is working hard at all of these goals because she is determined to get out of the hospital soon. Of course there are other medical issues that need to be stable as well. Overall, Kacie had a pretty good day. When we read, laugh, play games, or just lay with her it is all very special. Thank you for all the many prayers, the prayers are being answered. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 27, 2002 - Day +108 - Game Day... Kacie had a wonderful day today. Her white blood count and ANC remained the same as yesterday, even though she is on GCSF (growth factor for white blood cells). Her creatine level (determines kidney function) is down to 0.8, which is the lowest that it has been since she started having kidney problems. During physical therapy she played a game of cards with the therapist, but they played a little differently. The therapist had Kacie stand up at the table after each one of them would take a turn. She really is starting to get stronger. She has to build her muscle tone back up. We had her stand up and try to walk with the “pony” that is used to help her gain strength to walk again. She really tries very hard to stand and walk on her own. She sat up in the chair for most of the day watching movies and playing games. Her nurse gave her a PowerPuff Girls’ diary and Kacie started writing Erin notes in the diary. It is great that she is writing again. She will start back with schoolwork again tomorrow. Our family would like to express our gratitude for all that everyone has been doing, the support, prayers, and letters of encouragement. Please continue to pray that Kacie recovers and we can return back to Virginia soon. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 28, 2002 - Day +109 - Stop The Irrigation... Kacie was very tired today and after getting up around 8:30 a.m., she went back to sleep at 10:00 a.m. and slept until after noontime. She had stayed up late last night watching “Matilda”, so maybe she was just trying to catch up on some lost sleep. Her temperature and blood pressures have been in the normal ranges. Her white blood count was up at 2500, yet her absolute neutriphil count (ANC) had gone down to 700. They are still giving her GCSF (growth factor for white blood cells) to help stimulate the growth of these cells. The doctors want her ANC to stay above 2500 and will continue the GCSF as long as it is lower. Since her weight and her creatine level (determines kidney function) have been stable, the doctors feel that she is producing urine. They decided to clamp off the irrigation fluids to determine how well her kidneys are functioning. We just clamped it off tonight and so far it looks good. They will continue to monitor her intake of fluids as well as her output. She had a problem with retaining so much fluid before, so we will also be keeping a close record of her weight. Our care partner, Kate Montgomery, came by and helped Kacie write Valentine cards for the nurses. This allowed Donald and I to get out for a little bit. Kate has been a great friend, helping us out in every way. Kacie really loves spending time with her. Please continue to pray that Kacie continues to have great progress. Each little step forward is exciting news for us. We have been talking to Kacie about working hard to get better and out of the hospital. She continues to have one blessing after another. God has been with her every step of this journey. Our family feels extremely blessed to have witnessed so many blessings. We are grateful to everyone who have so faithfully prayed for Kacie and followed her progress. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 29, 2002 - Day +110 - Challenges Continue... Kacie continues to be very sleepy. We finally woke her up around 9:00 a.m. to give her medications. Before we could even give her any medicine, she started vomiting. She only ate a little bit for breakfast and we did get her to take her medicines. She hasn’t had much of an appetite in the last few days either. Kacie’s white blood count (WBC) and absolute neutriphil count (ANC) continue to be low. The WBC went up 100 to 2600 and the ANC stayed the same as yesterday; which is 700. We are extremely concerned about these counts. Please pray that we start seeing an increase in these counts, plus her hemoglobin and platelets will also increase. Since they stopped the complete bladder irrigation (CBI), she has been producing urine; which means the kidneys are functioning. They started giving more IV fluids and a diuretic (Bumex) to help stimulate the kidneys; however, her she appears to be holding too much fluid and her weight has been increasing. The doctors increased the Bumex today and then again tonight since her weight kept climbing. They will reassess her weight in the morning. Please pray that she starts releasing the extra fluid. This extra fluid buildup has us worried again. We definitely don’t want to be in a similar situation that happened at Christmas when she had to be intubated. We will be monitoring her weight very carefully. Kacie wasn’t feeling very well today, so the physical therapist could only strengthen her legs while she lay in bed. The occupational therapist tried to get her to sit up, but Kacie was in a lot of pain so she worked with her arms instead. She put weights on her arms and had her lift them to strengthen them. Kacie thought that was a lot of fun. We played cards with her and, of course, Kacie won. We spent some time reading to her. Kacie saw a commercial with Dairy Queen, so she used her “sweet and innocent look” to convince her daddy to walk to the Dairy Queen for a blizzard. It worked! Donald went out in the cold weather of Minnesota to get Kacie and I a blizzard ice cream. It is now 10:00 p.m. and her fever is at 100.3° F. Kacie really needs more blessings and healings. Please continue to keep her in your prayers. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 30, 2002 - Day +111 - Sleeping Beauty... Kacie still was very tired today. She slept until 9:00 a.m. and then had physical therapy (PT) and occupational therapy (OT). Around noontime she fell back asleep and slept until 5:00 p.m. She slept on and off throughout the rest of the evening. We tried to keep her up as much as possible. She complained of neck pain and headaches during her PT and OT sessions. They had her stand up with a walker, but she was not feeling well so she had to end her session early. Kacie’s temperature stayed around 99.8° F. She vomited several times throughout the day. Her blood pressure was high several times, as high as 167/114. She also had a stomachache and toe, feet, and leg pains. Her weight started stabilizing around 2:30 p.m. today, so hopefully, the doctors have the right balance of fluid intake and diuretics. Her bladder has started bleeding again. The neurologist came by to examine Kacie this evening. He felt that a change in her nerve pain medication on Monday is the cause for her sleepiness. That particular medication can act as a sedative. We met with her doctors today to discuss Kacie’s overall medical conditions. They all feel Kacie has made tremendous progress, yet she still has several medical issues that need attention. We did find out the Kacie’s bone marrow biopsy results showed that she is 100% donor cells! HOORAY!!! Continue the prayers. Kacie needs to start feeling better again. We are praying that she will have more energy tomorrow and will start showing great progress. Thanks again for your prayers and support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie January 31, 2002 - Day +112 - Sleeping Beauty Still Sleeps... Kacie continued to sleep throughout the day again today. Her blood pressures remained high as well and they continued to give her medicine to bring it down. She had a lot of headaches, but they were probably due to the high blood pressures. The doctors also increased her daily blood pressure medicine to twice a day. Since Kacie had headaches and was sensitive to light, we had to keep the lights off in her room all day. Each time that she did wake up she was nauseas and vomited several times. Tomorrow, the doctors are suppose to meet with the renal doctor who specializes in hypertension (high blood pressure) to determine the best method of treating it under her current medical conditions. She will probably have to be on several different blood pressure medicines each day. Kacie was feeling pretty badly all day, so she missed physical therapy and occupational therapy. Hopefully, she will start feeling better soon so that they can be more aggressive with strengthening her overall body. Towards the evening, Kacie did wake up for a little bit and was appearing as though she was starting to feel better. She was laughing and joking with Erin on the phone. It is wonderful to see her giggling and having fun with her sister. The neurologist examined Kacie this evening and decided that she should have another CT scan of her head. Through his examination he didn’t feel that she had any abnormal cranial pressure; however, he wanted to be safe by checking with a CT scan. While she was down there having a scan of her head, they also scanned her sinuses. The sinus CT scan came back normal. The head CT scan appears good. The resident commented that one of the ventricles appears a slight bit larger than the last scan; however, it was only slightly and nothing that would be alarming. The neurologist will read them tomorrow and let us know if there is any change. It has been snowing almost all day today. The cold weather and snow aren’t so bad when I just watch it from our window. It appears to be extremely cold when watching all the college students hurry past the hospital all bundled up in thick coats and boots scurrying to their classes. Fortunately, Donald takes the shuttle van to and from the hospital so that he doesn’t have to walk in the thick snow. The snow reminds us of all the great times back home when Erin and Kacie would throw snowballs at us, go on sleigh rides, and lay in the snow to make snow angels. Both of our girls are angels in their own special ways, and we love them dearly. We feel extremely blessed to have so many friends and family who have shown us how much you truly care. These medical challenges are so overwhelming, but we trust that God will continue to provide us strength and comfort. Kacie has the desire and determination to keep working towards a full recovery. Please continue to pray for her full recovery. Thank you for everything! Smiles & Giggles, Donald, Kathi, Erin, & Kacie |