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February, 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
February 1, 2002 - Day +113 - Memories... Kacie’s day was a little better today, even though she still had a lot of vomiting. Her blood pressure was more under control; which also meant that she didn’t have as many headaches. She did sleep some today, but not as much as she has been sleeping in the last few days. Kacie’s white blood count (WBC) went down to 1300 and her absolute neutriphil count (ANC) dropped to 500. The doctors had their weekly meeting with all the physicians and decided to change several of her medications. If her counts are still low next week, then they will probably do another bone marrow biopsy to determine how well her marrow is performing. The counts may be low because a medication that she is on may be suppressing the counts, or she may have a viral infection. The doctors are monitoring her closely. The bleeding and blood clots from the hemorrhagic cystitis (bleeding in the bladder) has increased today. She also had temperatures as high as 101.5° F, so they sent her blood to be cultured. The renal specialist recommended another blood pressure medicine that she started today. The neurologist was pleased with her CT scans; there were no changes since the last scan. The doctors also took Kacie off of the nerve pain medication and added a topical cream to help with her feet and toe pain. They were concerned that it may be suppressing the WBC. She appeared to be feeling better this morning. She even watched the movie “Angels in the Outfield”. That has always been one of our favorite movies. We can’t wait until the day when we’re back home as a family, all cuddled up together on the couches, watching movies and eating popcorn. That is the way “family time” is supposed to be, spending valuable and quality time together. We dream of many days ahead whether cuddling up to watch movies, making crafts together, packing picnic lunches to enjoy while playing at the park, or just plain sitting down together and discussing everything that happened that day. We also are looking forward to having more large parties for the girls. Like the time we invited our girls along with several of their friends to enjoy dinner at the “Goodwin Café”. Erin and Kacie made menus and Donald was the chef and I was the waitress. We videotaped them while they came down in their fancy dresses, high-heeled shoes, and purses filled with monopoly money. All the girls had a great time and wanted to do it again. It was especially funny when every one of them asked how much water costs to drink. They were all very frugal with their monopoly money, but they all tipped very well! Another fun party was their birthday “Hawaiian Luau”. We had invited a lot of people and had made a huge amount of food, only to have to postpone due to a very bad storm that knocked the power out. Luckily, we were able to save all the food and throw a large bash the next day. Last Christmas the girls enjoyed inviting several friends over for a girls’ sleepover. We had each of them wear Christmas hats and we sang carols while drinking hot chocolate as we strolled through a neighborhood all decorated for the holidays. These are some of the fun things that we like to do with our girls. We have always tried to be creative and include their friends in some of our activities. Erin and Kacie absolutely love doing these activities together and we know that each time just makes another memory for them as well as us to remember always. Even though this journey has been hard, we’ve made a lot of memories along the way. Some of them weren’t pleasant at the time; however, when we can witness the number of miracles that have happened and the great progress that Kacie has made, it is joyful. One of the memories that will forever remain in our hearts and minds is the outpour of love and caring from everyone. Thank you with all our hearts! Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 2, 2002 - Day +114 - Just When You Thought... Nobody ever said that this journey would be easy; however, we sure didn’t expect so many twists, turns, and bumps in the road. Some may read the following entry as a step backwards, but we choose to view it as the most appropriate medical treatment under the current situation. We are viewing it as a temporary set of steps to ensure that Kacie gets healthy quicker. Kacie had a rough night because she woke up about every two hours vomiting. The nurses kept giving her medicine to stop the nausea, but it didn’t seem to last very long. She hasn’t eaten in a few days, so she is only getting sick on bile. She was vomiting up a lot of mucus, so they decided to send it for a culture. Then she started vomiting some blood. They believe she may have what is called a Mallory-Weis tear; which is a tear in the esophagus wall from the force of her getting sick so much. The doctors were also concerned because she has a high acidic (or ph) level in her stomach. They decided that she needed a nasal gastric tube (NG tube) to help suction out her stomach. They also changed all of her oral medications that she was on back to IV medicines. They ordered an x-ray of her abdomen; which showed normal with no blockages. Kacie wasn’t very excited about having to get an NG tube back in her nose, but she was agreeable because she is tired of vomiting so much. The doctors also started feeding her nutrition through IV. They don’t want her eating or drinking for a little bit because they believe her entire GI tract needs time to heal. They have consulted with the GI specialists and they may decide to do another procedure, called an endoscopy; which is where they would take a scope and look at her GI tract. Hopefully, they won’t have to do this procedure since it is invasive and may cause additional bleeding. Another change that was made today was that the doctors started Kacie back on the continuous bladder irrigation (CBI). If you remember from past journal entries, CBI is where there is continuous fluid running through her bladder and draining back out. She goes through six bags in about 2 ½ hours. Kacie has been bleeding more and more each day from the bladder. We were seeing fresh blood and fresh blood clots. Some of the blood clots were even larger than before. The doctors decided it best to start the CBI back again and so far, she has not bled as much and it is almost clear. Since the doctors are concerned with her bleeding situations, they have increased her platelet parameters to 75,000. They have also run various other blood clotting factor tests. Her temperature was up as high as 101.7? F today, so they started culturing her blood. They’re also culturing her urine. Culturing is the best way to determine if there is an active infection. The other concern is that her white blood count (WBC) and absolute neutriphil count (ANC) have been staying low. Today the WBC is 1100 and the ANC is 700. Dr. Wagner, the Fanconi Anemia specialist, feels we may need to do another bone marrow biopsy this week if her counts remain low. Kacie just had a bone marrow biopsy about ten days ago and her hip is still sore from that procedure, but the doctors feel repeating this procedure may give them a better picture of how the new cells are performing. Towards the evening when changing Kacie’s hickman catheter dressing, I noticed that the site was red and the stitches that are suppose to attach the hickman to her chest were no longer attached to her chest. So, they brought in the x-ray equipment again and took an x-ray of her chest to determine if the catheter is still in the right place. The surgeon that put it in will be examining her again in the morning. We believe it is fine, since the nurses have still been able to draw blood and administer medications through the hickman lines. Please pray for our strength and pray that we continue to focus on the bigger picture of Kacie’s full recovery. We have been surrounded by God’s miracles during this entire journey and we know this is just another part of his miraculous healing powers. Please continue your prayers for Kacie’s full recover. Pray that she keeps good spirits in spite of everything she has been through and all she is continuing to go through. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 3, 2002 - Day +115 - Miracle In The Works... We are anxiously waiting for more sunny days. Our emotions have gone up and down so much that it is starting to wear us down. We keep reminding ourselves that Kacie is a miracle in the works. God blesses her during her weak times and we know that we have to be patient while he does his work. It is just very difficult when we’ve seen her come through so much already. Please continue to pray for our strength. We are exhausted both mentally and emotionally, so we will be brief with the journal entry tonight. Kacie has slept a lot today. Her temperature and blood pressures have been normal for the most part. The CBI (bladder irrigation) has been pinkish to clear most of the time. Whenever she gets sick or coughs, it turns red and a few clots come out. But for the most part the CBI is doing well. Her white blood count is 1100 and her absolute neutriphil count is 400. We are praying that these numbers will start to climb. The doctors are contacting the infectious disease specialist to consult about which medications she needs to be taking to help protect against bacterial, viral, and fungal infections. Even though she has an NG tube in to help drain her stomach so that she doesn’t vomit, she still has vomited a few times today. Mostly when she gets medications through the tube and also a lot of mucus. She hasn’t been vomiting blood though, which is a good sign. The plans are the doctors want to do an endoscopy to look at her GI tract and they want to do a bone marrow biopsy. These procedures will either be scheduled for tomorrow or Tuesday. We are requesting that they do the procedures at the same time so that she only has to go through anesthesia once. We are witness to the power of prayer. And again, we ask that you continue to keep Kacie in your prayers. Please pray that her bone marrow starts producing more cells, especially pray for the white blood count and the absolute neutriphil counts to multiply. Pray that these procedures go smoothly and that she starts recovering from these medical challenges. Many thanks for all your prayers and support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 4, 2002 - Day +116 - Movie Time... Kacie had a better day today. She stayed up most of the day watching movies. She also had physical therapy, occupational therapy, speech therapy, and her regular schoolwork. We were surprised to see her have that much energy today. Her white blood count was up at 1500 and her absolute neutriphil count was 600. These numbers are heading in the right direction. Keep praying that they continue to climb. Her temperature and blood pressures have been fine. Her bladder irrigation is clear again, except whenever she vomits. They started doing an upper GI tract test where they give her a contrast through her NG tube and then take x-rays. They were evaluating her GI tract for any obstructions. She vomited several times and we had to repeat the test. At first the radiologist thought that Kacie might have an obstruction in the bowel area right below the stomach, but after repeating the test there was no evidence of any obstructions. They weren’t able to schedule both the endoscopy and the bone marrow biopsy for tomorrow and they would like to schedule them together, so these procedures will probably be scheduled for Wednesday. They needed to have the GI tract test results prior to doing the endoscopy to ensure there are no obstructions. Please continue to keep Kacie in your prayers. She still needs a lot of healing and recovery. Pray that there are no additional complications, she has already been through enough challenges. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 5, 2002 - Day +117 - Gopher Day!... Kacie had a great day again today. She was asleep when physical therapy came, but the therapist was still able to stretch her legs and ankles. When the occupational therapist came, Kacie really got a workout with her arms by throwing and catching a ball with the therapist. The speech therapist gave Kacie a test on relational words and Kacie did very well. This is a test where she has to determine which words are related and how they are related. Then her schoolteacher came and worked with Kacie on some math facts. She has to retest all of her math skills to determine how much Kacie remembers. She did extremely well with the math facts too. Kacie’s white blood count went up to 1900 and her absolute neutriphil count remained the same as yesterday at 600. The doctors have scheduled her endoscopy and bone marrow biopsy for Thursday morning in the operating room at 9:15 a.m. She is still not allowed to have any food and drink until after they determine the condition of her stomach. Kacie’s bladder irrigation has been clear. Since they are keeping her platelets above 75,000, it appears that is helping the bladder to heal and not bleed. They will probably start trying to clamp the continuous bladder irrigation and determine whether her bladder will bleed again or not. Kacie has felt pretty good. She hasn’t been complaining of headaches or stomachaches today. She had a very busy schedule and took a nice nap after all her activities. Kacie was able to play a few games and watch a movie with one of the volunteers tonight so that we could run an errand. Three players on the Minnesota Gophers’ Basketball Team came by to visit Kacie. Since her blood counts are still low, we decided not to have them come into her room. However, we did get some pictures in front of her door. They brought her a signed poster of the players, a deck of trading cards with each of their pictures, and a ceramic gopher that bobs his head. She really loves the gopher! Again, we ask that you continue to pray for Kacie’s recovery. Her body has been through a lot and it may just take some additional time to heal. Pray that her spirits remain high and her body gets stronger and illness free. Thank you for continuing to follow her and pray for her health. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 6, 2002 - Day +118 - Unit 4A Needs Prayers!... Kacie’s white blood count climbed all the way up to 2700 and her absolute neutriphil count increased to 800. Prayer is powerful and God is awesome!!! These numbers are still low; however, we’re going to continue to pray that they continue to climb. Kacie had a good day today. She sat up on the side of her bed and played a ring toss game with the occupational therapist. The physical therapist had her stand up and walk (with our help) a few steps to sit in a recliner chair. Her legs are still very wobbly, but it will take time before her legs strengthen all the way back to normal. This was very good exercise for Kacie and she was tired afterwards. She slept for several hours. Her bladder irrigation is still clear. She isn’t vomiting as much. Her temperatures and blood pressures are good. These are all good signs and we are very thankful for her progress thus far. Kacie will be having an endoscopy and bone marrow biopsy tomorrow. She will have to go to the operating room and they will intubate her for the procedures. Please pray that she does well during the surgeries and the recovery, and pray that the results don’t show any major complications. At a time when we are struggling with our own daughter’s health, we have some very close friends that are just a few doors down that are praying for their son’s life. This family is very special to us because of all the love and support they’ve shown us during our roughest times. They’ve been with us every step of the way, even coming back over to the hospital to pray with us while we were waiting in the operating room waiting area for Kacie to make it through one surgery after another. Please keep Caleb Glover and his entire family (Steve-dad & Amy-mom) in your prayers. Caleb has fanconi anemia and he went through his bone marrow transplant a little over a week before Kacie went through her transplant. Caleb is a real fighter and the next couple of days will be very crucial and he needs our prayers. There are several children struggling with major medical issues on unit 4A. We need angels surrounding the children on this unit and God’s healing hand to provide the miracles. Once again, thank you for being with us in this journey. Your many prayers are helping us to cope with each new situation. Thank-you. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 7, 2002 - Day +119 - Another Visit To The O.R.!... Hello everyone, Kathi's connection to the internet had problems last night, but she was able to get a report to us anyway. She and Donald say that Kacie did well during the endoscopy and bone marrow biopsy on Thursday. They should get results on Friday. Kathi will update more completely as soon as she can get back online! Updated at 9:30 a.m. cst on Friday. My modem decided to work, as long as I hold the connection a certain way. Hopefully, it will work later tonight for the next update. Kacie woke up in a really good mood. She was full of smiles and giggles. They decided to take her to the operating room early. When we got to the pre-op area she had problems with her foley catheter, so they had to remove the foley until she went into the operating room. Kacie was very calm as we headed towards the operating room one more time. We’ve often wondered what she is feeling as we enter the operating room. She seems to know the routine. Donald stops them in the hallway so that he can kiss her, then I proceed to go into this very cold sterile room. The room is not very inviting, everything is white and there is a lot of stainless steel equipment. It is full of a lot of hospital personnel all dressed in blue scrubs, each with their own set of responsibilities. Kacie and I were joking with everyone and told them that they should change their outfits to purple or something more exciting, like flowers and smiley faces. Kacie became very comfortable and started telling some of her doctor jokes. The anesthesiologist was ready, so they started giving her oxygen while at the same time injecting anesthesia. It only took seconds and her eyelids got heavy and she was sound asleep. This was my signal to leave the operating room. I asked everyone to take good care of her; which is exactly the same statement that Donald and I make every time Kacie has had any procedure. No matter how many times Kacie has been in the operating room, it doesn’t get any easier. We still have a lot of emotion and pray for strength. As in the past, we sit in the waiting area not very patient, but full of anxiety. The hardest part of leaving her is waiting to meet her in the recovery room. The GI doctor came out first and said that Kacie did very well during the endoscopy. They had intubated her for the procedure. She removed her nasal gastric tube (NG tube) prior to starting the endoscopy. She noticed a couple ulcerations in her stomach and an area that she called red striping; which is inflammation. Then she noticed some edema (or inflammation) in the area from the stomach to the intestines. Since the x-ray with contrast solution didn’t show a blockage, she feels it is just inflammation. The esophagus area was also inflamed. So the doctor took biopsies of areas within the stomach and esophagus to examine for infections. She didn’t notice any signs of fungal infections or graft vs. host disease, so that was reassuring. Another area of concern is that the sphincter, the muscle between the esophagus and the stomach, is not working correctly which is causing acid reflux. It wasn’t much longer when the bone marrow transplant doctor came out to inform us that both procedures were complete and Kacie would be going to recovery soon. He also told us that they had already extubated Kacie since she was doing so well. We meet Kacie in the recovery room. The nurse was very pleased with her progress and said that Kacie didn’t even need oxygen. Kacie woke up well from the anesthesia and we headed back up to her room within a half an hour. We are expecting to hear back on the biopsy results from the endoscopy tomorrow. We should have some information on the bone marrow biopsy tomorrow as well. As we’ve been in this position to often, it is a “hurry up and wait” process. The waiting is the hard part. Our friend Caleb is still having difficulties, but there are a few good signs. Please continue to pray for him and all the other children on this unit. Please pray that Kacie’s results are normal and it is just a matter of time for complete healing. Thanks once again for your prayers and support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 8, 2002 - Day +120 - Praise God...Another Miracle... Today, day +120, is the day that we should have been going to clinic for a discharge. This is the day that we should have been packing to start heading back to Virginia. We have mixed feelings because we really want to be back home, so we can be back together as a family, especially with Erin. We miss Erin so much! Thankfully, she will be here on Feb. 16th for a quick visit. Even though we’d love to be home, we know that it is critical that we make sure Kacie is healthy before we make that trip back home. Pray that it won’t be much longer. Since Kacie had such a long day yesterday, we let her sleep until noon today. When she got up she was in the best of moods. She was laughing and joking with everyone. It is so wonderful to see her true personality again. The physical therapist made a deal with Kacie. She told her that if she could roll all the way over onto her stomach then she would give her a back massage. Kacie hasn’t been on her stomach since she first came into the hospital so it was very difficult for her to turn over, but she did it! She was grinning ear to ear while the therapist had to massage her back. Of course, Kacie made her massage it even longer, she didn’t want the therapist to stop. Kacie had a nice visit from Jennifer; she was a physical therapist student, who worked with her for several weeks. Kacie always enjoyed having Jennifer come to work with her so it was great that she came by to visit. Her mother wrote a devotional message about Kacie for a Catholic magazine that will be published in June. Kacie’s white blood count went down to 2500, but her absolute neutriphil count increased to 900. The bone marrow biopsy results that have come back are that she is still only 5% cellularity. She is making white blood cells and red blood cells, but not making platelets yet. The attending physician will be contacting her primary physician, John Wagner, on Monday to consult on whether they need to give her a boost of donor cells. They already had the bone marrow coordinator start the paperwork to have the donor consent to giving more marrow just in case they decide that is necessary. They are watching her counts very closely, and if they start increasing within the next few days they may decide to wait to see if they recover on their own. As we mentioned in the journal entry yesterday, the waiting process is the hardest. The doctors didn’t get to examine Kacie until around 4:00 p.m. We were anxious to know the results from the biopsies, but we managed to remain patient since we know there are several children that require more medical attention at this time. We were excited to hear that the biopsies of her stomach and esophagus were normal. What a miracle! Her stomach, esophagus, and intestinal tract just need time to heal. As far as the sphincter, the doctors believe if they can control the acidic level in her stomach then she will be fine. They will continue to monitor the acidic level and how well she tolerates food. She has already started asking to eat again. She has chicken broth last night and again this morning, and then we fixed her some macaroni and cheese tonight. She was smacking her lips because she loves macaroni and cheese. Kacie has a hard time keeping her platelet count up and she is still getting platelet transfusions a couple times a day. Every time her platelets have dropped below 75,000, her bladder will bleed a little. The doctors decided to increase the amount of times that her platelets are checked within a day, so that they can hopefully keep them above her parameter of 75,000. Most of the children only need their platelets to be above 10,000, but Kacie has needed her parameters to be higher. Caleb is doing a little bit better; however, he still needs our prayers. Another child, back in Virginia, that needs special healing is Kaitlyn. We know that prayer is powerful and we ask that you continue to pray for Kacie’s full recovery and all the other children on this unit and others who are having medical challenges. May God Bless you each and every day. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 9, 2002 - Day +121 - Fever Spike... Kacie woke up coughing and then started vomiting. This may be due to the acid reflux and the inflammation within her esophagus and stomach. She vomited mucous which makes us wonder if she might still have a sinus infection. Plus during the day she complained of headaches to include the area around and behind her eyes. She had a few episodes of vomiting throughout the day. She slept until noontime and then we got her bathed. The physical therapist stretched Kacie’s legs and then had her sit on the side of the bed. She still has a lot of pain in her upper thigh, like a “charlie horse”. We encouraged her to sit up for a couple of minutes to help strengthen that area. Kacie’s white blood count (WBC) dropped to 2300 but her absolute neutriphil count (ANC) is 1300. We’re excited that the ANC number went up. The doctors are still concerned that the white count isn’t responding better to the GCSF (growth factor for white blood cells). The attending physician decided to change from GCSF to GMCSF, which is another medication used for production of white blood cells. He wants to see if she responds better to the GMCSF. The attending physicians, along with Dr. Wagner, will be deciding on Monday whether Kacie will need a boost of donor cells. They have already started the paperwork process to initiate the process of contacting her donor. The doctor said that it might take as long as three weeks once the process starts, so they want to make sure they are prepared should we need to have the donor provide more cells. Around 7:00 p.m. Kacie was complaining of a really bad backache, so the nurse gave her some pain medicine. She also spiked a fever of 101.5?F, so they cultured her blood and contacted the resident on duty. The resident ordered an x-ray of her chest and abdomen area. According to the resident the x-rays of the lungs and the spine both looked normal. The radiologist will provide the final results in the morning. The resident started Kacie on different antibiotics since her temperature was up. Now that she’s had pain medication, Kacie is feeling great! We are watching “Parent Trap” for the hundredth time. This is a great family movie that we’ve always loved to watch. We have a special prayer request for Caleb and Andrea (both on this unit) who need God’s healing touch. Please continue praying for Kacie and all the other children that need to be healed of major medical challenges. Thanks once again for all of your prayers, love, and support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 10, 2002 - Day +122 - More Fevers... Kacie spiked a few fevers throughout the evening and again today. Her fever went as high as 102?F. Again, they cultured her blood to check for infections. So far the other blood cultures haven’t grown; which indicates no sign of infection in the bloodstream. Her urine and stool cultures have grown yeast, known as candida utilis. She is already on the correct antibiotics for this particular infection, but the doctors are consulting with the infectious disease specialist to determine if she should be on additional antibiotics. It’s possible that her body is becoming immune to some of the antibiotics. Kacie’s white blood count dropped to 1900, but her absolute neutriphil count remained at 1300. Tomorrow the doctors will discuss whether they will contact the donor for more cells. We carry heavy hearts, but know that God is still working miracles in our little girl’s life. The Varlack family need our prayers, as their precious daughter, Andrea, went to be with the Lord today. They have been great support for us and several other families on this unit. We pray that God will provide them comfort, peace, and strength. Please continue your prayers for our other friend, Caleb, and all the other children on this unit. Pray for Kacie’s fever to break, that her infections are cured, her bone marrow improves, and that she has a full recovery. As we look back over the last several months, we feel so blessed that we have so many wonderful friends and family who have joined us during Kacie’s Krusade. You have so graciously offered a lending hand, a caring ear, and an open heart during our most difficult days. We know without your love, support, and especially your many, many prayers we would not have been able to remain strong and filled with hope. We thank God for having each of you in our lives. Unfortunately, we haven’t had the opportunity to write thank you notes to everyone. Please know that we are extremely grateful and when things settle down a bit, we plan to send notes of our thanks. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 11, 2002 - Day +123 - Late Night... Kacie had a rough evening last night. When the nurses’ aide changed her, she accidentally pulled Kacie’s foley catheter. Kacie was in a lot of pain, plus she wasn’t able to drain. The nurse had to change the foley. At the same time that happened, Kacie had rubbed her feet, which had medicated lotion on, then rubbed her eyes and was she ever in pain. We had to flush her eyes with saline to keep them from burning. All of this excitement happened at 1:00 a.m., so we didn’t get to bed until around 2:00 a.m. Kacie decided to sleep late this morning. She seemed to be tired most all day. When she had physical therapy she started complaining of joint pain in her hip. She has complained of this pain for about three weeks, so the doctor ordered an x-ray of her pelvis and hip area. We should get the results in the morning. Her occupational therapist brought a hand strengthener tool for Kacie to start using to strengthen her hand muscles. The speech therapist and her schoolteacher also came today, but Kacie wasn’t as alert so it was difficult for her to work much. Between Kacie being tired and all the medications that she gets, it was hard for her to stay awake. Kacie’s white blood count is 1700 and her absolute neutriphil count is 1300. Her attending physician is pretty confident that they will initiate contact with the donor for more donor cells. At the time that we spoke with him, he didn’t know what Dr. Wagner’s recommendation would be. Hopefully, we will have some answers in the morning. Please continue to pray for Kacie’s overall health and full recovery. We are praying for an increase in white blood cells and that her bone marrow starts multiplying the cells. Pray for our strength and patience, as we’ve had to endure more than we ever thought possible. Many thanks for all of your prayers and support for our family. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 12, 2002 - Day +124 - Camp-Out... Kacie’s white blood count dropped to 1600 and her absolute neutriphil count dropped to 900. The doctors have gone ahead and started the process of contacting the donor for more cells. They will be asking that the donor have peripheral blood drawn and cycled through special equipment to retrieve cells, then infuse the rest of the blood back into the donor. This process will probably be done in two four-hour sessions. The doctors believe that peripheral cells will be stronger than doing another bone marrow aspiration from the donor. Please pray that Kacie’s donor will once again be gracious in offering this life-giving gift. Kacie had to do a breathing treatment today. It is a nebulizer that contained an antibiotic that is suppose to help prevent a certain type of pneumonia. This medication treatment will last for a month before she'll have to repeat the treatment. We have stayed in contact with Kacie’s donor and she has written to us and has sent Kacie several gifts. She is a 26-year old female. We can only communicate by sending notes and gifts through the bone marrow coordinator. Every note and every gift is opened and reviewed to make sure that we are staying anonymous. Both the donor and our family have to wait a year after transplant before we can share our names and where we live. Even though our communication is anonymous at this time, we’ve felt a special closeness to her already. Kacie’s x-ray results of her hip and pelvis were good. The doctors were evaluating whether she might have vascular necrosis; this is a condition that has effects on the way blood flows through the hip and joints. The doctors believe that she may be having joint pain due to the side effects of some of the medications that she is taking. Kacie has a yeast infection in her urinary tract. The doctors consulted with the infectious disease specialist to determine the best approach for controlling the infection. They decided to administer an antibiotic twice a day, for about a week, through the bladder irrigation system. Tonight was the first time of putting the antibiotic in and Kacie was very uncomfortable. We believe the medication gave her a burning sensation, plus the amount of medication may have been more than her bladder could tolerate. Hopefully, the next time will be better. Since the doctors were concerned with the yeast infection getting into the blood stream, they ordered a CT scan of her sinuses, her chest (lungs and heart), and her abdomen (mainly kidney) to determine if they see any additional signs of infection. These scans were ordered more as a precaution. We should get the results in the morning. After being in the same room for a long time, we decided we needed a change of scenery. Kacie and I decided we wanted to make a tent. We strung several sheets from an IV pole above her bed and made the coolest tent ever. Everyone kept peeking into her room to see what we were doing. I climbed into the tent with her and we read books and just talked. Kacie got tired, so she slept in her tent. We plan to build another tent tomorrow and we’ll eat marshmallows. Too bad we can’t roast the marshmallows. This is the best camp-out we’ve ever been on. Kacie had physical therapy, occupational therapy, and speech therapy today. When her schoolteacher came by she was sleeping because she had a very busy day. All of the different therapists, teacher, and child family life specialist will be meeting with us on Thursday to come up with a regular schedule and plan to help Kacie to stay motivated and have some consistency with her daily routine. Once again we want to thank everyone for following Kacie’s progress. Please continue to pray for her full recovery. Especially pray for the bone marrow to multiply cells and pray that the donor will be receptive to going through another procedure that can help Kacie’s bone marrow. Pray for Caleb, he has a leak in his lung causing his stomach lining to fill with air. They are hoping to wean him off of the oscillator soon. Pray that God will heal his lung and continue to remove any infections from his lungs and the rest of his body. Please also pray for all the other children that need medical healing. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 13, 2002 - Day +125 - More Prayers Answered... Praise the Lord! Prayers are being heard and more blessings are coming Kacie’s way. Her white blood count climbed to 2600 and her absolute neutriphil count climbed to 1600. Thank you for lifting her up in prayer. God is working the miracles right before our eyes. Please continue to pray that her bone marrow recovers and the cells continue to multiply. It is exciting to wake up to good news of her blood counts rising. During the night, Kacie woke up vomiting. Then she was complaining that she needed to go to the bathroom. After manipulating the foley tube there were multiple blood clots that came out. Hopefully, these are old clots and the bleeding doesn’t start back. Kacie did much better today when they administered the antibiotic through the bladder irrigation. The CT scans that were done yesterday on the sinuses, chest, and abdomen areas did not show signs of infection. We are so thankful! With Kacie’s blood counts being low, we’ve been very concerned of infections. Our family would like to wish everyone a “Happy Valentine’s Day”! The love that everyone has expressed to us is amazing. Kacie loves all the valentines and valentine care packages that she has received. Several churches, schools, and friends from all over have sent their expressions of love and care. Our hearts are filled with joy to know that we have all of you in our lives. Valentine’s Day is not about the gift giving, but it is about how you can express your inner most love for others. You have given us the gift of love and we are grateful. Hug your loved ones and especially your children. Show them how much you really love them. Please continue your prayers for Kacie’s bone marrow to multiply. We are hopeful that Kacie will feel better tomorrow and each day after. Continue your prayers for our friend, Caleb, and all the other children on this unit and others that need medical healings. “Happy Valentine’s Day” and our love to all! Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 14, 2002 - Day +126 - A Miraculous Valentine's Day!... Happy Valentine’s Day! What a miraculous day! Kacie’s white blood cells jumped up to 3800 and the absolute neutriphil count climbed to 2700. We are so excited to see these numbers multiply. Our prayers are being answered. We need these counts to continue to multiply and stay strong. Kacie woke up all full of energy. She acted as though she felt better and she was more interactive today. Every Thursday there is a television show that is broadcast through the hospital where the children can call in to tell jokes and play games. Kacie called and told a joke then she called again and won a game. The prize patrol came to her room so that she could pick out her prize. Kacie’s bladder seems to be healing. She still has an antibiotic instilled into her bladder to help with the yeast infection. The doctors will be testing to determine if the infection has cleared and once it is cleared up then they plan to pull her foley out. Kacie vomited some blood this evening so the doctors decided to keep her on “no food or drinks by mouth”. They will be consulting with the gastric internal specialist in the morning to determine if there is a medication that will help coat the stomach until it heals. When she had the upper GI tests the other day, there were ulcerations in the stomach and the doctors believe that is why she is bleeding. Anything in the stomach may be irritating the ulcerations. Kacie had the prettiest room for Valentine’s Day! Thanks to everyone for the great cards, letters, and care packages. She wore a beautiful Valentine shirt and cap, lay on a “Love Bug” pillowcase, and snuggled up to a Valentine Beanie Baby named “Snuggles”. Thanks for making it a special day! Please continue your prayers, we are seeing miracles every day! Pray for Kacie, as well as our friend Caleb and all the other children in need of medical care. We are hopeful that Kacie will continue to improve each day and will shorten this journey. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 15, 2002 - Day +127 - Foley, Foley, No Foley... Kacie had a great day today! Her white blood count went even higher to 5300 and her absolute neutriphil count climbed up to 3600! The doctors said, “Whatever you’re doing, keep doing it.” All the many prayers are being heard. Since we’ve been praying for her numbers to climb, we will just keep praying that they continue to climb. Thank you for the many prayers, they are being answered! After waiting as patient as one can, Kacie finally got the foley catheter removed today! It was actually not planned. Kacie had stopped draining from the foley and it appeared that it wasn’t all the way in, so the nurse removed the foley and tried to put another one in. She had a hard time getting the other foley in, so we asked that she wait and give Kacie some time to calm down. We also thought it would be good to test whether her bladder would function. All of us were concerned whether or not she would start having major pain from bladder retention, but to our surprise she was able to urinate on her own. It was painful, but she did it! You’re probably wondering how anyone can get so excited over someone going to the bathroom, but after 120 days of a foley (but whose counting?), it deserves a “YAHOO” and a “HIP HIP HOORAY! Kacie hasn’t vomited all day. She even called the doctor in this evening to ask if she could eat a cookie. They only want her to start with liquids, but the doctor told Kacie that he is so excited at her progress that she deserves a cookie if she wants one. She only ate one bite of the cookie, but she really enjoyed it. Kacie started having toe pains again today. We are still coating her feet and toes with a medicated lotion to help with the pain. Her hip is still causing a lot of pain, especially when she tries to sit up. The neurologist believes that it is bursitis instead of a nerve pain. The medications that are used for bursitis can cause problems with the kidneys and/or the blood counts, so the doctors don’t want to prescribe them until her medical situation is better. Hopefully, physical therapy can help with the hip pain. We are still celebrating Valentine’s Day! Tonight we watched a really hilarious home video that a group of Girls In Action (G.A.s) and Pomoco Auto Group had put together to wish us a Happy Valentine’s Day. The girls were very creative in telling some really funny jokes, as well as the skits and the wonderful messages of well wishes. This is the same group of girls that sent us a video back at Christmas time. Kacie didn’t know these girls before, but she now calls them her friends. It will be great when she can visit their church and meet the girls. Donald works for Pomoco and lots of the people there sent their well wishes and Valentine greetings as well. It was great for Kacie to see them on video because she could recognize them. We had great giggles at watching everyone try to talk while at the same time holding onto a giggling smiley doll that wiggled as she giggled. There were a lot of great messages and we loved them all. This video really brightened our day! We need another word other than “Thank You”. We feel as though we’ve used that over and over with all the kindness from everyone. So, we will try “Gracious” for tonight. Kacie loves to hear that you are praying for her recovery. She is excited about getting better and can’t wait to get the “green light” that she can go home. Please pray that she improves quickly, so that we can make this dream a reality for her. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 16, 2002 - Day +128 - Erin, Aunt Deb & Uncle Dan Visit... Rise and shine! Since Kacie was expecting visitors today, I woke her up early to get her bathed and ready for them to arrive. She was so excited to be getting ready for Erin, Aunt Deb, and Uncle Dan’s visit. She dressed up in a really cute Valentine shirt and hat. She snuggled up to her bear, “Smooch”, while anxiously awaiting their arrival. Kacie was excited to see all of them. Erin, all full of energy, came bouncing into the room with the biggest smile you’ve ever seen! I tried to get a hug from her, but she wouldn’t let me have a hug until she gave one to Kacie first. Our girls are such close sisters, as well as friends. It is great to be together again. Kacie loved laughing and giggling with Erin. Erin was a big help with Kacie’s mouth cares, medicines, and especially the entertainment. Kacie’s white blood count dipped down to 3800 and her absolute neutriphil count dropped to 2600. We’ve been told that there will be ups and downs, but we would like to see more ups! She is still on GCSF (growth factor for white cells), so hopefully we will see some improvement tomorrow. Kacie has been in excruciating pain from her hip pain. She tried so hard to sit up and then stand so that she could show Erin, Aunt Deb, and Uncle Dan, but the pain was too great. The doctors watched and were concerned with the amount of pain, so they are scheduling for a bone scan to be done on Monday. This test will show whether there is damage or inflammation within the bone area. If they don’t determine the cause of the pain from this test, then they plan to do an MRI of the lower back, hip, and thigh area so that they can determine if it is caused from nerve pain. Kacie has done very well with the foley catheter out. She has been able to go to the bathroom, even though it is painful. After having the foley out for a full day, Kacie started complaining that she needed to go to the bathroom. She tried relaxing, but couldn’t go. The doctors decided to use a straight catheter and relive her bladder. It was completely full. She felt much better. They did take the catheter back out and plan to only use a straight catheter when necessary. Kacie has vomited several times today mostly after taking oral medicines. Unfortunately, the doctors have made several medication changes today from IV to oral medications. It is a real struggle for her to keep the medicines down. We are worried that if she keeps vomiting, it may cause her stomach or esophagus to start bleeding again. As I’m writing this update, the nurse just took Kacie’s temperature and it is up to 101.5? F. They will culture her blood and we are waiting to see what antibiotics they will start her on. By looking at the nine oral medicines that I need to give her, I’m predicting that it may be a long night. The nurse is going to check with the doctor to see if they can go back to the IV medicines instead. I certainly hope so at least until she can tolerate anything on her stomach. Based on our update tonight, Kacie really needs healing. Please pray for her bone marrow, temperatures, bladder, hip pain, and all the other organs within her body. Please continue to pray for Caleb (he has shown a little improvement today, but needs a lot of healing) and pray for all the other children on this unit. Also, we learned of another child, named Matthew, that attends Grafton Bethel that is in need of prayers and healing. There are so many children that we’ve met that need our prayers. Each of these children have a special place in our hearts. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 17, 2002 - Day +129 - More Medical Struggles... I’d rather be writing a more positive journal entry, but unfortunately Kacie hasn’t been feeling very well. She slept all day today. Her temperature went as high as 102? F during the night. Her blood pressure has been high several times requiring additional blood pressure medications. Both her white blood count (WBC) and her absolute neutriphil count (ANC) dropped again today, her WBC is 2900 and her ANC is 2000. Kacie’s stomach has been hurting and she has been vomiting several times throughout last night and then today. She complained of headaches and neck pain. Her hip pain has been excruciating to the point that it is hard for her to even move around in the bed. The doctors ordered a CT scan of her brain again tonight. They were making sure that the ventricles had not gotten enlarged and the shunt was functioning. The results showed the ventricles were fine and the shunt is working. Tomorrow will be a busy day, so I’ll try to update more then. Kacie will have a bone scan of her hip. The neurologist will probably order an EEG of the brain. The bone marrow transplant doctors want to have an echocardiogram done to determine if there is an infection on the hickman catheter. Depending on her examination in the morning and her bone scan, they may order an MRI of the brain and also of the hip and lower spine. Please pray for Kacie’s overall health. These medical struggles are very difficult and she needs healing. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 18, 2002 - Day +130 - OH NO, Meningitis Again?... Dear God… How can this be happening? Kacie has been through so much and now we may be repeating some days that we definitely didn’t ever want to relive. Please God we need one more miracle! These words keep ringing over and over in my mind and every prayer seems to start out with this plea. Kacie wasn’t responding very well yesterday. Several times we called the doctors in to determine what might be happening. At 10:45 p.m. last night Kacie had a seizure. This seizure was a different type than the seizures that she had before. We didn’t feel very comfortable with her medical situation, so I was trying to stay awake and keep an eye on her. Since only one of us can stay in her hospital room due to the filtration system, Donald along with Erin, my sister Deb and her husband Dan had to sleep at the apartment. Thankfully, I was staring at her when all of a sudden her whole body was shaking uncontrollably. Immediately, I opened the door and shouted to get a doctor. My knees felt weak and I wasn’t sure if I could continue to remain calm. Once the doctors and nurses came in, the pressure was relieved and I just started weeping. Donald and I were so frustrated because we’ve been noticing for a few days that she wasn’t always responding to us and we’ve asked about seizures. Kacie’s doctors explain that it is rare for someone to have different types of seizures. Once they start with one type of seizure, they will usually have the same type whenever they have any more seizures. Of course Donald didn’t get any sleep last night and he kept calling me several times just to check and make sure Kacie was sleeping peacefully. Our precious angel, Kacie, and our very special angel, Erin, both have endured more than we ever thought possible. Kacie has been so brave and always the perfect patient. Erin has been a real strength for all of us. We are so blessed to have such wonderful daughters and we love them both so dearly. Their visit didn’t go as planned. Unfortunately, every time Erin has come to visit, Kacie has not done very well. We are very sad that Erin, Deb, and Dan will be leaving today. So much has happened in such a short amount of time, so a lot of the details may be left out of today’s journal page. We’re overwhelmed with everything that has happened. Kacie’s temperature went as high as 105.4? F and she had high blood pressures. She started vomiting up blood, so she had to get a nasal gastric tube (NG tube) put into her nose. This is not an easy procedure and Kacie was fighting with the nurses as they tried to get the tube put in. Kacie was also having problems with her bladder. She started bleeding again from the bladder and had several blood clots. The last culture showed that she still had a yeast infection in the bladder, so they decided to start the continuous bladder irrigation again and instill antibiotics straight into the bladder. They had to remove the foley that she had in and put a special one back in for the irrigation system. Unfortunately, they had troubles putting the larger foley in and it took three foleys before it was finally in. Donald has become an expert at setting up the equipment for the bladder irrigation system, so he had everything ready to go once the new foley was put in. During the time of putting in the new foley, she was fighting so hard that she accidentally caused the NG tube to come out. So… she had to go through getting another NG tube put back in. The bladder irrigation wasn’t draining very well, so the urologist came and flushed her foley tubes. Kacie had a bone scan done of her entire body and it was normal. They were looking for any bone infections in the hip area. She had a chest x-ray and it was normal. She had an echocardiogram to determine if there is an infection along the hickman catheter. We don’t have the official results back yet, but the technician thought it looked normal. The doctors decided they needed to check her spinal fluid for infection. The neurosurgeons came and examined Kacie and decided that a spinal tap would be less risk for causing infection than a tap into her shunt in the brain. So, they decided to do a spinal tap. The next chain of events literally turned our world upside down. I stayed in the room while they performed the spinal tap. After watching the first doctor try four different times with not even a hint of spinal fluid coming out, my heart just started sinking. I’ve been in the room each time this same procedure was done in the past. As I watched the doctor’s facial expression, I knew this wasn’t good. Each time he tried, I just prayed that fluid would squirt out. But that wasn’t the case. Finally, he said that someone else should try. The same doctor that had intubated Kacie on the morning of Christmas Eve gave it a try. She wasn’t very successful at first either, but then she realized that she was in the area for spinal fluid it just wasn’t flowing. After waiting for what seemed like a really long time, she noticed a little fluid. I was watching intently to see if fluid would come out, but I was also watching the doctor’s reaction. The doctor looked puzzled. Then she told me, in the best possible manner, the news that would make my heart sink. She said the fluid was like a gel and it was thicker than she had ever seen. Donald had been meeting with the GI doctor about the problems with Kacie vomiting blood when the ICU doctor called him into the room to let him know of the results from the procedure. He was devastated, but remained calm as he asked several questions about what kind of aggressive treatment could be started immediately to help her situation. The doctor was very confident that Kacie has another infection in the spinal fluid, so we may be looking at meningitis once again. She was only able to get a drop of fluid, and it was thick, so hopefully the lab will be able to culture the fluid and determine exactly what type of infection. The doctors contacted the infectious disease specialist and the neurosurgeons to determine the best antibiotics to start her on. The CT scan that was done of her brain last night showed that the ventricles were smaller and the shunt appeared to be working. This hopefully means that the infection may be more localized in the spinal area rather than in the brain. Tears keep flowing. All of this news has been very hard on us. A lot of details were left out of today’s journal entry, but today was an extremely busy day. After not sleeping last night, dealing with a lot of difficult situations today, then hearing this latest news we are exhausted. Hopefully, they have scheduled Kacie for one-on-one nursing tonight, that way it might be easier for us to get a little bit of sleep. Tomorrow will be another busy day, filled with MRIs and other tests if needed. We really despise journal entries filled with sad news. Please pray, pray, and then pray some more for Kacie’s overall health. Pray that whatever infections she may have that the antibiotics are working. Pray for all the doctors to have the wisdom necessary to help Kacie and the other children struggling with difficult situations. Pray for all the other children, and for our friend Caleb. Thank you so very much for all of your continued prayers and support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 19, 2002 - Day +131 - Long, Exhausting Day... It is midnight and we are exhausted, so we’ll be brief in the journal entry for tonight. We’ll try to update with more details and information tomorrow, but knew our great supporters would want to read the updates as soon as possible. Trying to sleep last night was difficult due to Kacie’s medical issues at hand. At 5:00 a.m. her oxygen level had dropped to 92% and she had crackling sounds in her lungs, so they had to give her a diuretic to help pull off extra fluid from her body. Today was a little calmer than yesterday. Kacie had a very extensive MRI done of the brain, spinal column, and the pelvis area. This took several hours and Kacie did very well while lying still in the MRI tube. The neurosurgeons felt the MRI of the brain looked good. We are waiting for the radiologist to read the MRI for the final results, plus we don’t have any results back on the spinal column or pelvis area. We should get results back tomorrow. On the echocardiogram, the doctors noticed a small clot on her hickman catheter. This is not unusual and since there weren’t any blood cultures that showed signs of infection, they will probably not replace it. Kacie will have an EEG (brain wave scan) tomorrow. Since she had a seizure and her neurological status has changed some, the neurologist felt this test would be beneficial. He wanted to make sure it was done while Kacie is awake since it would provide more accurate results. Several of the doctors believe the spinal fluid may have been thick due to the original meningitis. They feel the thickening is localized to that area. The gram stain showed no organisms and no white blood cells in the sample; which would indicate that there is no infection there. So far the sample has not grown anything from the culture. This is good news since it may mean that she doesn’t have an infection in the spinal fluid. However, the neurosurgeons believe we may need to tap into the shunt to get some spinal fluid and test that sample. That decision will be made tomorrow. Please continue your prayers for Kacie, Caleb, and all the other children. Thank you for all your love, support, and prayers. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 20, 2002 - Day +132 - In God's Hands... Praise God! There was still a lot of activity in Kacie’s room, but today was a little less hectic than the last few days. A lot of tests have been done within the last few days. The doctors are discussing all the results that they’ve received and they are still waiting on some of the tests results to determine the right treatment plan. According to the doctors, they have to be real careful in her diagnosis and treatments because she doesn’t follow the typical medical situations. The MRI of the spine and the hip both came back normal. The neurosurgeons and the neurologists are still examining the MRI of the brain. They have differing opinions as to whether there is an infection in the spinal fluid, shunt, and brain area. The neurosurgeons did a tap into the shunt and did a gram stain and culture of the fluid. The gram stain showed “no organisms found and rare white blood cells seen”. This still may indicate infection and will be better determined once the culture results are finalized. It may take several days for anything to culture, so they will continue to culture for about 10 days even if they don’t see anything growing. Kacie had an EEG done this morning. It started out as a 20-minute test, but she wasn’t following all the commands needed to get an accurate assessment. They needed her to keep her eyes closed, but she wanted to have fun and was giggling and talking to us. The doctors decided to leave her hooked up to the EEG and they taught us how to operate it so that we could record any unusual activities for the next several hours. One of the doctors even suggested that they hire Donald since he always has to do the “extra jobs”. Our physician, nursing, and technician training are getting pretty extensive. We should get the results back in the morning on the EEG. For those who are not familiar with an EEG, this test measures brain wave activity. It is useful for determining if there is slow brain response or seizure activity. They attached a lot of different colored wires to her head with glue and then put gel into each connection. Kacie’s hair has been growing back in, so it is lots of fun trying to get the glue off of her scalp and out of her hair. Kacie had to have the foley catheter replaced again today. Her foley had completely come out. She had several large clots as well. Once the new foley was put in, she started draining a lot better. The bladder irrigation is showing less bleeding from the bladder. Kacie’s white blood count is 3300 and her absolute neutriphil count is 2700. She has been running high fevers all last night and today; however, they have started to respond to the Tylenol this evening and her temperature is now 100.3?F. Since the doctors have raised the platelet parameters to 100,000, it has become extremely difficult to maintain that level due to the high fevers and bleeding from the stomach and bladder. They will probably change the orders to scheduled volume reduced platelet transfusions. They use volume-reduced platelets in order to maintain a control on fluid intake because it contains less fluid than normal platelets. We hope that the antibiotics are fighting all infections within her body and the temperature is reflecting that things are starting to improve. Thank you for the many prayers asking God to provide us strength, guidance and wisdom for the doctors, and special healings for Kacie. There have been so many tests and a lot of details to each day that we hope we’ve provided enough information in the journal. Sometimes everything just starts running together. Please continue all your many prayers for Kacie, our special friend Caleb, and all the other special children here and elsewhere that need medical healings. Pray especially that the doctors are able to diagnose and treat Kacie’s current medical situation. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 21, 2002 - Day +133 - The Waiting Game... Kacie’s temperature finally broke this afternoon. It is at 98.3°F at 8:30 p.m. this evening. Her white blood count dropped to 2800 and her absolute neutriphil count decreased to 2100. The doctors now have her on double doses of GCSF (growth factor for white blood cells). There is no evidence that double doses help, but there is no risk in giving the extra doses to see if her blood counts will respond to them. There were no further tests done today, since we are still waiting on the decisions from all the current test results. The neurologist and neurosurgeon will be examining Kacie again and then meeting to discuss her situation. They have been reviewing all of her test results and comparing her current results with past test results. Hopefully, the doctors will be able to diagnose her situation and determine a treatment plan. So far the cerebral spinal fluid cultures haven’t reported any growth. Kacie’s neurological status has changed so they are not only looking at possible infections, but also checking medication toxicity and interaction between all the medications that she is currently taking. Every cell in her body is more sensitive due to her having Fanconi Anemia; which means that she may be reacting differently to medication than what would be expected. Donald made us some really delicious deli sandwiches (with VIRGINIA ham) for dinner. It is good to bring a little bit of Virginia to Minnesota to remind us of home; plus, this was a real treat over eating hospital food all the time. We topped off our gourmet sandwiches with a strawberry swirled cheesecake that my mom, dad, and Erin sent for Valentine’s Day. The cheesecake was so delicious that it “melts in your mouth”. God has provided comfort and strength for us thus far. Now we are praying for patience as we wait for the doctors to diagnose Kacie’s medical situations. Please continue to pray for Kacie’s full recovery, our patience, and the doctors’ wisdom. Pray for Caleb, as he has had some additional struggles today. As always, thank you for joining in Kacie’s Krusade and being by our side during the many challenges in our lives right now. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 22, 2002 - Day +134 - Still Waiting... A lot of questions are still unanswered. The doctors are still evaluating all of Kacie’s test results and medications. So far, the cerebral spinal fluid cultures have not grown. They are still keeping her on antibiotics in case the culture results show infection. Kacie had a good day. She got some much needed sleep. Her temperatures broke yesterday and they have stayed within normal range all day today. Kacie’s white blood count rose to 3500 and her absolute neutriphil count dropped to 1900. She still has some neurological changes that the doctors are evaluating. The EEG test results didn’t show any signs of more seizure. The doctors have prescribed a sitter to remain in Kacie’s room during the night. This is so that someone is constantly checking her vital signs and to be here in case of a seizure. It makes it easier to get some sleep knowing that someone is with her throughout the night and if anything happens will wake us up. Kacie interacted with Jason from the Child Family Life. We try to make sure that all of her time with Jason is “fun time” and she gets to choose what she wants to do. Today she started coloring a felt poster of dolphins. She also made a few things with play dough. Then she had two volunteers come in and play some games with her and watch a movie while we went to get our mail. Donald made some more deli sandwiches tonight. He decided to share our “Virginia hospitality” and made some sandwiches with the Virginia ham for some of the nurses and parents of other patients. The journey that we are on is a difficult one. It is full of ups and downs, twists and turns, and bumps in the road. We have been faced with a lot of challenges; however, God has shown us many miracles. One of the greatest blessings is that we’ve met an extremely wonderful Christian family that is experiencing similar medical challenges. We believe that God chose this time for both of our families to be here so that we could be support for one another. As we’ve written in the past, their son Caleb needs special healings. Today they experienced some very low times, but then experienced a miracle with some good news. Caleb still has a lot of difficult challenges, so please continue your prayers for his healing. Please pray that the doctors diagnose Kacie properly and that each day is brighter. Pray for her complete recovery. Keep all the other children with medical challenges in your prayers. Thank you for lifting us all up in prayer. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 23, 2002 - Day +135 - Patience, Patience, and More Patience... It is hard to remain calm and have patience when we are still waiting for answers. We’ve requested that the doctor contact the neurologist that is the most familiar with Kacie to get his expert advise on her neurological status. Things are about the same today with her neurological condition; however, we are concerned and want them to determine what is causing the change. It is possible that the changes are due to the seizure that she had Sunday night, an infection in the cerebral spinal fluid, or medications. So far nothing has grown from the cultures of her cerebral spinal fluid; which indicates that there is not an infection. Kacie’s temperature has started to go back up today. They have been culturing her blood and nothing has grown. She is having a difficult time keeping her platelet parameters above 100,000. At noon her platelet count was 102,000 and then at 8:00 p.m. she dropped to 56,000. She is averaging platelet transfusions twice a day. The doctors stopped the medication into the bladder since the last two urinary tract cultures showed negative for yeast. This was hard because it took two hours twice a day, plus it was very uncomfortable for Kacie. The doctors have all stated that Kacie has had some very complicated medical situations. One doctor said, “She is a one of a kind”. Another doctor said, “We’ll have better answers once Kacie’s bestseller book is written”. In other words, Kacie is not an easy patient due to all the medical challenges that she’s already been through and her current situation. Again, we pray for the doctors to have the wisdom to diagnose and treat her overall conditions. On the positive side, Kacie’s white blood count increased to 4500 and her absolute neutriphil count took a leap up to 2900! Her creatine level is now at 1.0. All of these counts are headed in the right direction. Praise God! She had a good day. We tried five different times to watch a movie, but she kept falling asleep. We read books and spent valuable and quality time just talking. She asked about eating today, but her stomach isn’t healed enough to allow her to eat yet. We appreciate all your many prayers for Kacie’s recovery. Please pray that her neurological status returns back to normal. Pray that every cell, tissue, and organ in her little body completely heals. Continue to pray for our friend, Caleb, and all the other children dealing with medical challenges. Thank you and God Bless! Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 24, 2002 - Day +136 - Our Precious Little Angel... We sit and we wait. Time seems to be at a snail’s pace when we are looking for answers, yet the issues are so complex that the answers aren’t obvious. The journal page tonight is going to be very brief. We’ve been through a lot of emotional challenges and realize that we all need to get some sleep. We’ve been told by several of the specialists that Kacie is a very complex patient. Not only has she been through a bone marrow transplant due to two very serious diagnoses, Fanconi Anemia and Aplastic Anemia, but she also developed meningitis and several other very serious illnesses during the transplant process. The doctors ordered CT scans this evening of her brain, sinuses, chest, abdomen, and pelvis. We met with the neurosurgeon tonight and he doesn’t see any new infection or inflammation in the brain, nor does the cultures indicate any infections. They plan to do another MRI of the brain tomorrow so that they can compare it to see if the results are changing. Her fever rose to a high of 105?F during the day. So far none of the earlier blood cultures and urine cultures don’t show infections. The doctors are starting to look at all the organs within her little body. They are looking at the possibility that either medications or some infection within her body is altering her neurological status. As we watch her frail little body work so hard to overcome all these major challenges, we can’t help but cry. We’ve cried so much that our eye color has changed to red. We are reaching out in faith that God will completely heal Kacie. She has been through so much already and these new challenges are making it very difficult. She is starting to hold fluid again, gain weight, and have increased respirations. We are fearful that if they don’t get this under control then she will need dialysis. We are praying that she doesn’t balloon up quickly like she did during Christmas and have to be vented. There are so many challenges that Kacie is faced with right now. Please pray that her oxygen remains stable throughout the night, that her weight goes down, that she stops holding so much fluid, and that her neurological status returns to normal. Pray for every organ in her body that whatever infection might be causing her harm will clear up. Only God can completely heal Kacie, so please pray that he will provide the doctors the wisdom to determine all her medical issues and be able to effectively treat them. God has provided us strength thus far, so please continue your prayers for our patience and strength so that we can be the best parents and caretakers for Kacie. Pray that Kacie has a restful evening and wakes up to miracle healings within her body. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 25, 2002 - Day +137 - God Bless Our Little Angel... Oh what a day! The bumps in the road now have grown to be as large as mountains. Our hearts have been ripped apart, but in the same sense have been comforted by the grace of God. Just when we thought things were bad, things got worse, and one of our biggest fears was relived again today. We write this journal entry tonight with tears flowing down our cheeks trying to find the right words to express Kacie’s day. “GOD, Please Give Us Strength And Kacie Healing!” As you read in yesterday’s journal entry, Kacie’s neurological status was worsening. What we didn’t know was that it was also affecting her breathing. Each shift Kacie’s weight was steadily increasing as much as 2.2 lbs. per shift. The doctors were giving her several doses of diuretics to pull the fluid off, but her body wasn’t responding very well. Her little frail body was quickly expanding and her kidneys were failing again. Last night we told her nurse that we felt we were getting ready to relive Christmas Eve when Kacie had to be intubated and put on dialysis. This nurse has been a special friend to us and really loves Kacie and said she just wanted to cry. Each day Kacie seemed to be getting worse and it is so difficult watching her go through so much. After being up most of the night due to Kacie being extremely agitated, uncomfortable, and struggling to breathe, I decided to get up at 6:00 a.m. since there was a sitter in her room and go take my shower. I headed past the nurses station and I told the charge nurse on duty that they might want to go ahead and call in another ICU nurse because I knew Kacie would probably be back on the ventilator and dialysis sometime today. Donald arrived sometime before 7:30 a.m. to find two nurses and myself struggling to keep Kacie calm in bed. Donald tried to calm Kacie and hold her as still as possible. He said that it reminded him of his days of wrestling back in high school. Kacie is extremely feisty and strong. We struggled to keep her in a sitting position so that she could breathe, while at the same time knowing in our hearts she would soon be in respiratory trouble. Within a few hours the ICU team was called in to prepare for possible reintubation. After the team arrived and accessed the situation, within minutes they realized that she needed to be intubated quickly. The intubation went well and within thirty minutes the dialysis team was there to perform dialysis on Kacie. In looking at the chest x-rays the doctors determined that Kacie lungs had filled with fluid in less than three hours. This is not common and indicated that she was holding lots of fluid. The dialysis team was able to remove 7.7 lbs. of fluid. Immediately, her lungs were no longer in major distressed and she was able to breathe more on her own. By 9:00 p.m. the ventilator settings had been significantly reduced. ICU and the respiratory therapy teams felt that this was great progress for the first day and they also feel that if Kacie continues with this progress, she may be able to be extubated by Wednesday. She may require a few more days of dialysis to control the fluid within her body and ensure that the kidneys are functioning again. The neurologist that is the most familiar with Kacie is back on shift this week. He visited this evening and was shocked to see what had transpired in the last week. He has reviewed the MRI and CT scans and believes he has some indication of what may be wrong with her neurological status. He wants to review them again with the neuro-radiologist in the morning. This is definitely the roughest road to travel. We’ve endured some highs and some lows. We’ve cried and we’ve prayed more in the last four months than most people within a lifetime. Without God’s love and faithfulness for our family, we wouldn’t have been able to endure these many challenges. As always, our hopes, trust, and faith is in God Almighty and we know that he will always do what is best for Kacie and our family. We know that God is no longer just walking beside us, but he is now carrying us. He has been our pillar of strength, courage, and wisdom. We give him all the credit, honor, and glory for all of Kacie’s miracles and blessings. Please pray that Kacie’s neurological concerns are limited to just medication toxicity and is reversible. Pray that she doesn’t have to visit the operating room anymore. Pray that her lungs are strengthened and the excess fluid is removed from her body and that her kidneys are restored to new health. Please pray that the source of infection, that is causing her high fevers, is found and eliminated. Please pray for Kacie’s overall health that she can continue to concur all illnesses that attack her body. Please don’t forget to continue to pray for Caleb Glover and his family and all the other children on this unit. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 26, 2002 - Day +138 - Blessings & Miracles Needed... Where should I begin to describe the extreme situations that we’ve faced throughout the day? Just after having to adjust to the fact that Kacie was put on a ventilator and dialysis yesterday, we were faced with additional challenges today. We are in constant prayer that many blessings and miracles will be sent down from heaven. Kacie had a lot of struggles during dialysis. Her blood pressure kept dropping so they were only able to pull off 4.4 lbs. and they had to give back fluids to help her blood pressure go back up. She had gained extra fluid again during the night last night.
The neurologist, Dr. Charnas, examined Kacie this morning and was able to get her to respond to him. She opened her eyes and was able to blink them. He was extremely excited because last night she wasn’t able to respond. He felt that was a good sign. After he reviewed the MRI results of the brain, he told us that he feels strongly that Kacie has CSA toxicity. CSA is a medication that bone marrow patients (BMT) are on to help prevent graft vs. host disease (GVHD). He also told us that the effects are reversible; which means her neurological status should greatly improve. They have stopped her CSA medication and started another one for helping to prevent GVHD. It will take a few days for all the CSA to leave her body, then she should improve. They are planning on ordering another MRI scan of the brain to determine whether the scans look better or not. This picture is Dr. Charnas sporting around in a Hampton Crabber jacket. The chest x-ray of Kacie’s lungs this morning looked like there was more fluid on the lungs than the x-ray last night. She was having some problems keeping her oxygen levels up. Every time she was even slightly moved in the bed, she would tremble and her oxygen levels would start dropping. They had to suction her out several times. They had weaned her down on the ventilator by the morning; however, she started having some problems keeping her oxygen levels up, so during the day they had to increase her support on the vent. We received final results on the CT scan of her chest from a few nights ago and it yielded more shocking news. The radiologist noticed two nodes within Kacie’s right lung, so the pulmonary specialists were asked to do another bronchoscopy. The fluid they pulled out was tinged with blood. This was also alarming; however, the gram stain didn’t show any organisms and moderate white cells. They are culturing the fluid for bacterial, viral, and fungal infections. Please pray that nothing cultures out. Kacie’s fevers seemed to be back to normal ranges during the night and most of today. Then towards the evening she started having fevers of 103.8? F. Since Kacie has been struggling with fevers for a while, the doctors are checking everything within her body for infections. The infectious disease specialist has requested a special bone scan be done to determine if there is any infections within the bones. Recently she had a bone scan done, but this new scan that is being ordered is a special type of bone scan that is more accurate in Fanconi patients. As if we didn’t have enough on us already, we were faced with having to move to a different room today. They will be renovating the current BMT unit, so all the patients were moved to the old ICU unit. The largest challenge was that three of the patients (Kacie, Caleb, and Brady) were all on ventilators. They had respiratory specialists, ICU doctors, nurses, and lots of volunteers helping with the moves. Each patient on the ventilator had to be manually bagged during the move; this is where someone manually squeezes an oxygen bag to provide the patient air into their lungs. Thankfully, all of the patients were moved without any major complications. Our room is a lot smaller so we boxed up most everything (including my clothes) and took them back to the apartment. The futon that I sleep on wouldn’t fit into the room and with all the extra equipment that Kacie is currently on, there wasn’t even room to put a pull down bed. We wanted to make sure that there is plenty of room all the way around Kacie’s bed for easy access in case of an extreme emergency. We were fortunate enough to have a recliner chair that would fit into our room; which should work for a bed. The closet in the room is only big enough to hold a couple of outfits, so the funny part is Donald will have to pick out my clothes and bring them over. Hopefully, my clothes will match. Just kidding, Donald is good at picking out my outfits. We’ve started to become very numb to all the challenging news that we keep hearing. As many tears as we’ve shed, it’s hard to believe that we continue to cry over and over again. In our hearts we have faith that God will perform more miracles on Kacie. As parents we continue to have sorrow for Kacie as she struggles each and every day. She definitely deserves an “Olympic Gold Medal” for bravery. Please pray that the heavens will open up and lots and lots of God’s many blessings and miracles will pour out on Kacie, Caleb, Brady, Rachel, Connor, and all the other wonderful children dealing with difficult medical illnesses. We are so thankful for the wonderful families of these children. Even with their own struggles, they are there for us when we need a shoulder to cry on, an ear to hear us, or someone to pray with us. Pray that Kacie’s situation will improve throughout the night and that by morning we will have better news. Thank you once again for walking this journey with us. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 27, 2002 - Day +139 - Encouraging News... Oh what a day! Last night Kacie’s blood pressure did return to normal. The doctors stopped her regular blood pressure medication so that her pressures wouldn’t drop. It is important to closely monitor the blood pressure since it should be higher pressures for dialysis, yet if she has hemorrhaging in the lungs then they have to ensure it doesn’t get too high so they try to keep it lower. What a balancing act! Thankfully, they were able to keep Kacie’s blood pressures at a balanced level. The chest x-ray this morning looked better than the one last night. These are great baby steps towards the lungs improving. The pulmonary specialists told us that so far the preliminary tests results from the bronchoscopy from yesterday have been negative, meaning that nothing has cultured. They tested for at least five different types of infection. We will still need to wait for the final results as they may take from several days to a few weeks. The nodes that were discovered on the CT scan of the lungs were described as possibly being mucous plugs, blood, or a collapsed vein. They believe the lungs may just have been hemorrhaging; which can happen after a bone marrow transplant. They are working hard to keep her platelet count above 100,000 and they also gave her fresh frozen plasma (FFP) to help with the clotting factors. Dr. Charnas, the neurologist, examined Kacie today and she was able to respond even better than yesterday. Great Job, Kacie! Even though Kacie is on the ventilator, the occupational therapist and the physical therapist both came and worked with stretching and strengthening Kacie’s arms and legs. Kacie had an MRI of the brain today. It was very scary since they had to transport her by bagging her (manually pumping air into the lungs). Then the MRI took an hour and the resident, Dr. Bob, had to bag her the entire time. Kacie did great! Her oxygen levels stayed at 100% and she maintained good blood pressures. Today is Dr. Bob’s last day on the BMT unit and we are really going to miss him. Dr. Charnas came by later in the evening to give us some encouraging news. He said that the MRI results of the brain today looked better and it appears that the CSA toxicity is starting to diminish. The respiratory specials were able to change several settings on the ventilator that would allow Kacie to initiate more breaths on her own. She is down to 30% oxygen as well; which means that she is doing 70% herself. Please continue to keep Kacie and the other children in your prayers. We had some encouraging results today and we are hoping for more positive days ahead. Thank you for the many prayers and support that you are providing to our family. Smiles & Giggles, Donald, Kathi, Erin, & Kacie February 28, 2002 - Day +140 - Sleepy Night... It’s been a long day with a lot of different doctors examining Kacie, so we are tired. We’ll update the journal once we get time in the morning. Everything is stable. Kacie still needs a lot of prayer for her full recovery. Thanks and have a good night. It is now morning. Sorry for sending this update so late. How many specialists can you fit into a room at one time; especially when it is as small as the room we’re in now? Today was very hectic with all the different physicians and specialists coming in to examine Kacie. Even though she had a busy day, she seemed to be resting well. Kacie did very well on the ventilator today, so the respiratory specialist was able to turn down some of the settings on the ventilator. The pulmonary physician felt that the x-rays of Kacie’s lungs this morning are about the same as the x-rays that were done last night. Some of the culture results from her bronchoscopy have come back as low and moderate yeast growth in the bronchial tubes. The lab is determining the species of the yeast and the sensitivity to the antibiotics for treating it. Kacie is already on antibiotics for yeast infections, so hopefully with a few more days of antibiotics it will clear up. An ophthalmologist examined Kacie’s eyes to look for infections. The doctors wanted to make sure that there wasn’t a yeast infection growing in the eyes. Since Kacie has developed a rash, the dermatologist did a skin biopsy on Kacie’s leg to test for graft vs. host disease (GVHD). Both the neurology team and the renal team examined Kacie. The ICU physician stopped in to examine Kacie and we discussed her progress. He feels that she may be able to be extubated in about 4-5 days. The infectious disease specialist also came by and examined Kacie. During dialysis they had to give Kacie a medication that would help her blood pressure to stay up so that they could pull off fluid. They were able to take off about 2 ½ lbs. Kacie also had fevers during the evening. All of the different physicians and specialists have to coordinate their care through the bone marrow transplant (BMT) physicians. The BMT physicians are responsible for her overall care and they closely monitor everything. The night nurse noticed Kacie’s eyes as being asymmetrical; meaning each eye is a different size, plus they weren’t responding well. Of course, this scared us since it could mean her ventricles are enlarging. The doctors came in to examine her eyes and after remembering that she had eye drops that would dilate the eyes (up to 24 hrs.), then they explained that her eyes reacting that way was due to the medications. The ups, the downs, the twists, and the turns have kept us on our toes. Please continue to keep Kacie in prayer as she struggles with her medical challenges and pray that she continues to improve. Caleb had a great stride today. He was taken off the oscillator and transferred to the ventilator; which is a big step. Special healing is needed for all these children; please continue praying for their recoveries. Smiles & Giggles, Donald, Kathi, Erin, & Kacie
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