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October, 2001 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 October 1, 2001 - Bone Marrow Decision Day... Kacie did great during the MRI of her liver. The test took about 45 minutes and she had to remain still the entire time while lying inside a full cylinder MRI machine. They allowed me to be in there with her, but because the cylinder was so long I wasn’t able to touch her. She listened to N-Sync to help her relax. We made a smiley face catheter necklace for Kacie. We drew a smiley face on one side and a sad face on the other. That way Kacie can let the nurses know how she is feeling. Everyone at clinic loved the necklace. Today was very stressful since we had to meet with the doctor to finalize all the details prior to transplant. The meeting was with the work up doctor, Dr. Baker, and it lasted about 3 hours. Because Kacie’s blood levels have increased, it makes the decision to transplant now even more difficult. Dr. Wagner emphasized Kacie’s type of Fanconi (type C), makes it even more critical to proceed with transplant now. Basically, Kacie will need a transplant at some point and there is no reason to prolong this decision. Just because her numbers have increased does not mean that the Aplastic Anemia will go away. Based on their research, it is much better to be going to transplant when the patient is healthier. We have been blessed that Kacie appears to be healthy and her blood levels have come up. All of the preliminary tests that were done on Kacie this week came back with good results. There were no signs of pre-leukemia in her bone marrow thus far. They are still waiting on another test to come back, but feel it should be fine. The blood counts for today did decrease from the other day, but they are still pretty good. The white blood count (WBC) is 3.2, the red blood count (RBC) is 2.67, the hemoglobin is 9.7, the platelets are 71,000, and the absolute neutrophil count (ANC) is 900. On September 25th, her numbers were WBC 3.5, RBC 3.61, hemoglobin 13.0, platelets 46,000, and ANC 1400. The red blood count and the hemoglobin probably decreased due to the amount of blood that has been drawn this past week. She was given platelets the other day prior to surgery, so her platelet count probably went up due to the transfusion of platelets. The white blood count and the ANC would not have been affected by the blood draws, so these numbers just happened to go down. Thanks for the many prayers. We feel extremely blessed to have so many people praying for us during these difficult times, and especially for Kacie’s recovery. Smiles & Giggles, Donald, Kathi, & Kacie October 2, 2001 - Kacie's Fun Day... Kacie had a short clinic visit this morning, then we were off to have some fun. Kacie decided that she wanted to go to the Mall of America, especially Camp Snoopy. We let her ride a few of the smaller rides, but we had to be careful since she has the catheter in her chest. We went to the Basic Brown Bear Factory, where Kacie was able to make her own bear. She chose a pink bear. First, she had to stuff it and she added special beads. Next, she gave the bear a heart so that the bear would have feelings, and a star for good luck. The most important part was next…she had to give it the “hug” test. The bear was too fat, so she took some stuffing out, and then sewed it up. Finally, the bear got a haircut and an air washing to get rid of the extra fuzz. She picked out special clothes for the bear. This was a lot of fun for her. Kacie’s new friend, Molly O’Connell, took us around the St. Paul area where she grew up. We met her parents and one of her brothers. They were very nice. It is great to meet such wonderful people; it helps make our visit easier. Kacie and Molly played in one of the local toy stores, then we had pizza for dinner. Kacie is due at the hospital at 5:30 a.m. for a bone marrow harvest surgery. She will be put to sleep for this procedure. By the time she awakens, it will be time to be admitted onto the bone marrow transplant ward. Tomorrow will be another busy day. Keep Kacie in your prayers during this procedure tomorrow. Again, thanks for all the care, support, and prayers! Smiles & Giggles, Donald, Kathi, & Kacie
October 3, 2001 - Day -7 - Hospital Admission Day...
Today actually starts the process where we count the days. We start with -7 and will count down until day 0, which is considered the day that she will get her new bone marrow. Then we will be counting upwards after the transplant. Kacie went into surgery for a bone marrow aspiration this morning. They harvested 600 cc units of bone marrow. This is equivalent to about two soda cans. Normally, they only take 2 cc units when they are testing the bone marrow. Just like the other day, Kacie slept a long time after the anesthesia. When she was in recovery, she began shaking which is sometimes caused by your metabolism, so they had to give her some Demerol to stop her from shaking. We actually got to meet Tim Krepski today. He was responsible for locating and choosing the donor. Several of you have heard me speak of him, since I've had numerous phone conversations with him during the process of finding a match. I've talked with him so many times that I felt we already knew him. Tim worked with the doctor to help with the bone marrow aspiration. She was admitted to the pediatrics bone marrow unit 4A at about 11:00 a.m. this morning. We are very fortunate because Kacie was assigned a larger room and it has a pretty good view out the window. She slept most of the day. Then around 3:00 p.m., she spiked a fever of 104° F. She was given Tylenol to try and bring the fever down, and they also drew blood to have cultured. They started her on a 24 hr. antibiotic just in case she caught a virus. Hopefully, her fever will stay down; otherwise, they may have to postpone the radiation that is scheduled for tomorrow. Normally, they allow patients to leave the hospital on the night before they start radiation. Kacie had already made plans with her friend, Molly, but since she was running a fever we chose not to go out. When she finally woke up, she was in severe pain in her hips where they did the aspiration. The nurse gave her pain medicine, but she continued to have a lot of pain for around 30 minutes. They were going to give her a stronger dose of pain medicine, but we had her get up and walk a little and either the medicine started working or the walking helped. Donald and I decorated her room a little bit while she was sleeping. Kacie will finish decorating it tomorrow. She has lots of smiley faces all over the room. Please pray that Kacie’s temperature stays down and that the radiation goes well tomorrow. Also, pray that she doesn’t have any negative side effects from the radiation. Thanks to everyone and God Bless! Smiles & Giggles, Donald, Kathi, & Kacie
October 4, 2001 - Day -6 - Radiation Day...
Kacie was scheduled for radiation at 8:30 a.m. She had to sit in a certain position for 20 minutes without moving. They taped her hands to her legs so that she would stay still. She was in the radiation room by herself while they administered total body radiation. Kacie listened to a Travis Tritt cdrom that she really likes. We were able to see her on a monitor screen. She is such a brave girl. She did extremely well. Once she left the radiation room, she had to wear a mask. This is the first step to killing off her bone marrow. She got the chills right after she came back up to the room, so they had to warm her with warmed blankets. She slept most of the day. Around 12:15 p.m. her temperature went back up to 103.6° F. They took some blood and will culture it again today. It usually takes about 3 days to get blood culture results back. We decorated her room some more today. Everyone keeps telling her that she has the best-decorated room. She has a lot of smiley faces, including smiley face lights. She hung up the collage of pictures that her classmates made. That really makes her room special. Molly came by and visited with Kacie. This was really good for Kacie because she got up and played some games. Tomorrow she will start chemotherapy and will have treatments for four days. They said that she will probably be sleepy. It is hard for us to imagine her sleeping anymore, since she is sleeping a lot already. We will still be required to have a certain routine that we will need to get her up to do. One of the things she has to do is to take care of her mouth and teeth by doing an antibacterial mouth scrub every 4 hrs. She is also required to get a daily bath, do a little exercise, and do schoolwork. Her teacher came by today to meet Kacie, but Kacie was asleep. Keep praying and God Bless. Smiles & Giggles, Donald, Kathi, & Kacie
October 5, 2001 - Day -5 - First Dose of Chemotherapy...
Kacie’s hemoglobin count was down to 7.8, so they had to give her a red blood transfusion this morning. She started on a lot of different medications today. At 10:00 a.m., she began her first chemotherapy, a chemo drug called Cytoxan; which was administered for 2 hrs. Then she was given another chemo drug called Fludarabine for 30 mins. The Cytoxan is used to destroy or control the growth of diseased cells. The Fludarabine is used to destroy or control the growth of diseased cells by inhibiting DNA synthesis and is used to destroy the old marrow which will allow the transplant to work. The chemo drugs are given through her central line. She was sleepy for several hours. Once they began a medication, called ATG, Kacie had a reaction. It caused her to start shaking with the chills, so they gave her some Benadryl to help. Her temperature started to climb again, so they had to culture her blood. So far, the cultures that they have been taking are negative. She is taking two different antibiotic medications, since she keeps spiking a fever. These will continue for a couple more days. Kacie had several more side effects from the ATG, she had nausea, a fever, headache, and she broke out in hives over a good portion of her body. The hives is a form of an allergic reaction. This medication is a horse serum and is used to suppress your immune system and used to prevent or treat graft-versus-host disease (GCHD). She will have this medication for the next several days. It takes 4 hrs. to administer the ATG. She also had a few more pre-medication drugs and Methylpred, which is a steroid and antiflamatory, it is also used to help fight graft vs. host disease (GVHD). Kacie designed a calendar for her room. Thanks Uncle Scott for the calendar kit! It was a lot of fun making it. We decorated the room a little bit more today. She has a wonderful nurse named Wendy that she really likes. Two of her favorite nurse aides are Sandra and Carolyn. They have all been a big help to her. The care on this unit (4A) is absolutely wonderful!!! Please pray that Kacie gets rid of these awful side effects quickly, pray for her strength and courage. She was done great under the circumstances. Today was very challenging, but we are praying for better days ahead. Smiles & Giggles, Donald, Kathi, & Kacie
October 6, 2001 - Day -4 - Second Dose of Chemotherapy...
Kacie had her second doses of chemotherapy today. She had about the same schedule of medicine as yesterday. This picture is Kacie receiving her chemo treatment, which was administered by one of her favorite nurses, Patty. She started having some blood clots in her urine and her platelet count was down to 13,000, so they had to give her a transfusion of platelets. Once they start the bone marrow process, they normally only get platelet transfusions if their platelet count is below 10,000. The doctors were concerned since she started having clots. Either the low platelet count is causing the clots or she is starting to have side effects of the first chemo drug, Cytoxan. According to the doctors, this particular side effect shouldn’t have started this early in the process. In order to minimize the blood clots, they are now going to try and keep her platelet count above 71,000. Last night they woke Kacie every two hours to go to the bathroom. Some of the medications that she is on may cause problems with the bladder, so they have her go every two hours to ensure the bladder is working properly. She will be on that schedule for a few days. When we wake her, she looks like she is sleep walking to the bathroom. She usually goes right back to sleep. The doctors decided to give Kacie additional doses of pre-medications to help with the allergic reactions from the medicine, ATG. Usually, they administer ATG for 4 hours. They determined that they would schedule the ATG to run for 5 hours to see if that would stop the side effects that she experienced yesterday. After about 3 hours of receiving the medicine, she began getting the hives on her face and arms again. They increased the dosage time to 6 hours and the hives got better. Fortunately she didn’t have all the other unpleasant side effects that she experienced yesterday. Kacie spoke with her big sister, Erin, tonight. One of Erin’s classes sent her a lot of letters. They were very creative in their writings, drawings, games, and especially the jokes. Thanks for the letters! This was a lot of fun for Kacie and brightened her day. Erin has been spending a lot of time designing some decorations for Kacie’s door. We can’t wait to get them and put them up. Please continue to pray that Kacie doesn’t have any of these nasty side effects and that she gets stronger everyday. Thanks for all your prayers, support, and Kacie loves the letters that she is receiving!!! Smiles & Giggles, Donald, Kathi, & Kacie
October 7, 2001 - Day -3 - Third Dose of Chemotherapy...
Kacie had a very good day today. She still received the same medications, but with very little side effect. She just got a little bit pink on her face and was very sleepy. The doctors and nurses are great!!! They adjusted the medication, ATG, that was causing her a lot of the side effects. She now gets pre-medications prior to starting the ATG, then again midway through the treatment. They also increased the time it is administered to 5 hours instead of 4 hours. Most patients need it decreased to 3 hours, but everyone reacts differently. The doctors have also adjusted the minimal amount of platelets that she should have at all times. They had to give her more platelets today. This definitely helped since she didn’t have any more blood clots. Kacie did have some fun today. She made several more decorations for her room. She made a bat and a witch out of the foam felt. We didn’t have orange, otherwise she would have made a pumpkin. We’ll have to see if we can’t find some orange foam felt. We heard that a local car club had a car wash for Kacie. Thanks to all the young people that were out there supporting her. We heard that it was raining. All of you are real troopers!!! Thanks for the support!!! Kacie loves all the cards that she has received. It is a lot of fun going through the mail. Do you think we are turning into Viking Fans? Donald won the jersey for Kacie in a game machine. Kacie was very excited! Donald tried picking up the Redskin’s jersey, but it fell from the claws four times…kind of like their record 0-4. (Ha! Ha!) Thanks once again for everyone’s support and keep praying! Smiles & Giggles, Donald, Kathi, & Kacie
October 8, 2001 - Day -2 - Final Dose of Chemotherapy, Yipee!!...
Kacie had a rough night last night. Not only did they wake her up every two hours to go to the bathroom, but around 1:30 a.m. she complained of her throat hurting. The nurse gave her some Tylenol with Codeine. She threw up several times. So, they started giving her Morphine through her central line. After about an hour, Kacie woke up complaining of her stomach hurting. The nurse said that it was probably acid, since her acidic level was high. So, they started giving her Zantac through her central line to help with the stomach pains. After they got her pain under control, Kacie slept pretty well. She was very tired when she woke up in the morning and she wouldn’t eat breakfast. She said she wasn’t in pain, but she was very quiet and only wanted to sleep. Kacie is still getting the same medications as the previous couple of days. They have adjusted her medications to help alleviate some of the side effects that she was experiencing. Around mid-morning, she woke up and was throwing up again. She finally went back to sleep and slept most of the day, except for having to wake up every two hours to go to the bathroom. The only thing she ate today was two small grapes and one peanut butter cracker. The doctors plan on starting her on a continuous drip of TPN, which is a nutritional supplement. The doctors stressed that we shouldn’t force her to eat because she would probably not be able to keep it down. Kacie’s blood pressure started climbing. Once it had risen to 144/92, the doctors started her on a blood pressure medicine. One of the side effects of some of the medication that she is on is high blood pressure. The shuttle driver/security officer, Gwynn, came by to visit with Kacie last night. She brought her a balloon for her room and lots of other goodies. Today, Molly came by during her lunch hour and brought Kacie a really cute angel bear. Kacie slept through most all of their visits. Kacie’s teacher, her speech therapist, the librarian, and Jason, from the child family life, came today but Kacie slept through all their visits. Kacie had another visitor today, named Rochelle, who brought her a big smiley face balloon. Kacie met Rochelle and her sister, Jessica, during some lab testing prior to being admitted into the hospital. Jessica is 27 years old and was scheduled for a bone marrow transplant as well. During her preliminary tests, they discovered some tumors on her lungs, so they want to do chemo treatments to dissolve the tumors prior to starting the bone marrow transplant. Jessica was diagnosed with Hodgekin’s Disease. Please pray for Jessica’s recovery. Rochelle is a very special person who cares a lot about her sister, please pray for her strength as she is Jessica’s caretaker. Thanks for all your love and support! Smiles & Giggles, Donald, Kathi, & Kacie
October 9, 2001 - Day -1 - What a FUN Day!!!...
Kacie had a very eventful day today. It was the last day of the ATG medication. She got a little bit of a rash, but it disappeared quickly. Once the medicine was completed, she asked the nurse if she could cut the bag up. This was a good day, no more chemo, no more ATG, and no more waking up every two hours to go to the bathroom. Kacie had several visitors today. Two of the Viking players came by and visited. We’ve included their picture today. Thanks Vikings for coming by, you definitely made Kacie’s day! Plus she loves the sponge paints that you brought her. Cole Smith came by and visited. He is two years old and has Fanconi Anemia, and is post transplant. Cole stood outside Kacie’s window and waved to her. He would tell all the nurses to come look at Kacie. Cole made her a beautiful card. Kacie was a little sad because she thought she should be allowed to wear her mask and go outside her room. She really wanted to play with Cole. Right now it is critical that we get Kacie and Cole healthy, one day we will be able to let them play together without having to wave through a window or wear masks. Snoopy stopped by to visit with Kacie. He wasn’t allowed in her room though. He waved through the window. They did open Kacie’s door for a second so that she could get a picture with him. Molly came and played cards and sponge painted with Kacie. She brought Kacie a card from her dog, Sadie. The card has a picture of a dog on it. Kacie hung it on her door, and it looks like the dog is looking right at her. The biggest surprise of all… Uncle Scott (Scott George) and Grandpa (Sam George) flew in from Virginia!!! Kacie knew that Uncle Scott was coming to visit, but she didn’t know that Grandpa was coming. Grandpa has never flown before. He actually said it wasn’t too bad. They brought all kinds of neat things for Kacie. Scott gave her a really cool sticker making kit. She made a pretty cat sticker to hang in her room. Thank you, Mrs. Harrington, for the beautiful red smiley pillows that you made. They really brighten Kacie’s room. Jenique, Kacie loves all the gifts that you send to her, especially “Smiles-a-Lot”, the horse. One of Kacie’s favorite gifts was the sign that her big sister, Erin, made to go on Kacie’s door to her room. It is very beautiful and everyone loves it! Thanks, ERIN! Thanks to everyone for all the cards, activities, and love that you are sending Kacie’s way. We greatly appreciate everything! This was the first day that Kacie appeared to feel a little better. She was laughing and having a really good time. She started out sleepy and not feeling well, but all the excitement from the many visitors really perked her up! Almost forgot to mention… Kacie will probably not receive her new bone marrow until Thursday (10/11/01) morning. By the time they receive the bone marrow and then run it through some filtration, it will be Thursday. Well, we’d better get some sleep. Smiles & Giggles, Donald, Kathi, & Kacie
October 10, 2001 - Day -1 - Waiting for My Bone Marrow...
Kacie had a great day today. She played “Guess Who” with Grandpa. They had a great time. Kacie was pretty tired, so she took a long nap while Dad, Grandpa, and Uncle Scott went to the Mall of America. Kacie’s blood pressure has gone up several times, so they have started her on a daily blood pressure medicine. This evening around 9:00 p.m., her blood pressure went back up to 140/92, so they also gave her blood pressure medicine to help lower it more quickly. They are monitoring the level of a drug, called CSA, to determine the amounts in her blood system. Last night it was high, so they ordered another blood test this afternoon to verify the results. In the meantime, they’ve lowered her dose of the CSA. Kacie finally received a package that Erin had mailed to her over a week ago. She was so excited! Erin had made her several necklaces, bracelets, and wall hangings out of beads. She did a great job! Erin is so creative! The bone marrow day was changed to tomorrow since it is coming in very late this evening. So have lots of FUN, enjoy your day, and hug your children. If you don’t have children, then hug your parents. We certainly are going to be PARTYING here tomorrow. If you hear the joy across the world, you’ll know it is us celebrating! Kacie has asked for a “Power Puff Girls” cake for the party. I’ll write more tomorrow. It is getting late, but my little night owl has decided that we need to stay up and play “Monopoly”. That is fine with me, any time that she is feeling good, I’m ready to play! Sorry for not much of an update today, but I’ve got to go play “Monopoly”! Smiles & Giggles, Donald, Kathi, & Kacie
October 11, 2001 - Day 0 - THE BIG DAY...KACIE'S BMT DAY...
Hip, Hip, Hooray!!! Today is Kacie’s BMT (Bone Marrow Transplant) Day!!! Kacie slept well last night and was in a great mood this morning. Dad, Uncle Scott, and Grandpa went looking for the perfect BMT cake, plus Kacie has been asking for a butter biscuit so they were in search of a biscuit as well. Did you hear the celebration at 12:25 p.m. central standard time? We definitely were celebrating… Kacie received her new bone marrow at 12:25 p.m. and it only took 5 minutes to administer. They give her the new marrow through her central line. We were all surprised because the marrow was clear rather than red. Since today is a special day for Kacie, they allowed all of us in at once during the transplant process. The hospital staff brought her a present and a balloon. Thanks to everyone at Fairview University Medical Center who took part in ensuring that Kacie receive this new bone marrow and for making this a very special day! Kacie was very excited and asked the doctor, “Where are the bones?”. We all had a nice chuckle. The doctor said he would bring the bones in later, but he was only kidding. Kacie loved her cake because it was a very special cake that a local bakery, named Wuollet, made this morning with the “Power Puff Girls” on it. Thanks to Wuollet Bakery for coming through on this short notice and making a beautiful and delicious cake. Kate Montgomery came by to meet and visit with us today. She is a volunteer that was assigned to assist us if we wanted. Kate is really nice and she spent a lot of time playing games with Kacie. Kacie loved the Halloween Barbie and candy that Kate brought to her. Thank you Kate for spending time with Kacie today, she really enjoyed it! Kacie talked Uncle Scott into playing Battleship and then Monopoly with her. It is wonderful to see how well she is feeling today after receiving the new marrow.
We decided to update the website a little bit earlier today since we knew everyone was wondering when she would get the new marrow. We’ll post any additional information for today on tomorrow’s update. Please continue to pray for Kacie and that the new bone marrow engrafts quickly. Thanks for everyone’s love, support, and prayers. God Bless. Smiles & Giggles, Donald, Kathi, & Kacie October 12, 2001 - Day +1 - Starting To Feel The Effects... Kacie woke up several times last night, then again when she woke up this morning, not feeling very well. She is having some of the side effects, such as diarrhea, vomiting, stomachaches, and soreness in her mouth. She slept for a long time today. She has been pretty quiet, but we believe it is because of the mouth sores. Kacie tolerates pain very well, and it takes a lot for her to tell anyone that she is hurting. We are realizing that when she gets quiet for a long time, then she is probably in pain. They have been giving her Morphine to help with the pain and Phenergan to help with the nausea. The doctors have increased her daily blood pressure medicine as well, so they can hopefully level her blood pressure without having to give additional medicine. Kacie played a game of “Sequence” today. She won, of course. Kacie has always loved playing games and this helps to get her up for a little bit. After playing “Sequence”, she quickly fell back to sleep. Seaford Baptist Church was serving some delicious spaghetti tonight! Thanks to everyone at Seaford Baptist Church for their very generous support in helping Kacie. We’ve heard from several people that the dinner was very delicious and the decorations were great. A lot of work went into making this dinner a success, and we are greatly appreciative of all the hard work from everyone. Thanks also to everyone who was able to make it out to the dinner, we know that you enjoyed it! Each day is a blessing and we fill extremely blessed to have so many wonderful friends that are showing their love, support, and prayers. Thanks for everything and God Bless everyone! Smiles & Giggles, Donald, Kathi, & Kacie
October 13, 2001 - Day +2 - High Temps...
Kacie woke up several times in the middle of the night with pain from her mouth sores. They decided to go ahead and start her on a continuous Morphine drip, which also has an additional pump so that she can push when she needs more pain medicine. They thought it would be best if she could help monitor her pain level by using the pump, since she is not good about telling us when she is in pain. Kacie spiked a fever of 101.6° F earlier this morning. They culture her blood anytime her temperature is over 101.5° F; which means they mix her blood with bacteria to determine if there are any infections. It can take as many as five days to get culture results back from the lab. Later this evening her temperature went back up to 102.2° F, so they had to culture her blood again. The doctor also ordered a chest x-ray be done to make sure she isn’t developing any lung infections. The x-ray technician had to bring the x-ray equipment into Kacie’s room so that they wouldn’t have to make her leave the room. We will probably get the results in the morning. Kacie slept most of the day due to the amount of pain medication that she in taking. She is having several of the side effects that they have explained to us, such as the high temps, nausea, and severe pain from mouth sores. She was also complaining of having a problem with hearing, she explained it as a muffled sound. They noticed that she is spilling glucose into her urine. The doctors will be monitoring the glucose level carefully, since several fanconi patients end up having to go on insulin during their treatment. Uncle Scott and Grandpa had to leave this morning to go back to Virginia. Kacie really loved seeing them. Kacie wanted Grandpa to ask for a “set of wings” from the stewardess on the plane since they forgot to give him a set when he flew for the first time. We have several special prayer requests for anyone reading our website today: Please lift Cole Smith and his parents up in prayer. Cole is Kacie’s two-year old friend that is +80 days after transplant. Cole had pre-leukemia prior to his transplant. During his clinic visit on Friday, they were told that the leukemia gene is back. They will have to stop his steroids and cut back on the amount of CSA; which is a drug that prevents Graft vs. Host Disease (GvHD). The doctors now want Cole to develop a mild case of GvHD in hopes that the new donor cells will kill off the leukemia gene. Please pray for comfort and peace for Ricky and his family. They are from Holland and have been staying at the Ronald McDonald House while his sister is recovery from her bone marrow transplant. Ricky’s twin sister, Robin Prange (8 years old), was diagnosed with leukemia and she passed away Thursday evening. The hospital will be having a service in her honor. All of these children are so brave and having to deal with more than is possible for me to try and explain. As I am writing this update for the evening, the nurse came back in to check Kacie’s vital signs. Once again, she spiked a fever, which is now at 102.6° F so they are culturing her blood for the third time today. If she continues to have high fevers, then they will culture blood once daily. Kacie’s blood pressure also was on the lower side of 102/40. The resident came in and decided that they would monitor it every two hours instead of every four hours, but he felt that the blood pressure was fine. There was also a high level of glucose in her urine again, so they will have to consult with the doctor to determine if they need to start her on insulin yet. We can’t say it enough, but the doctors and nurses here genuinely care about all of their patients and we are extremely appreciative that we are receiving the best of care for Kacie. Our prayers are many, and we have the faith that God will be answering each and every one. On the brighter side, as of yesterday we started counting upwards. We are on day +2 after transplant and counting up!!! Smiles & Giggles, Donald, Kathi, & Kacie October 14, 2001 - Day +3 - A Long Night & A Long Day... Around 11:00 p.m. last night Kacie had to have another x-ray of her chest. The protocol that she is on requires a frontal view of the chest and a side view. She had to go to the x-ray department for this x-ray. This was her first time out of her room and she had to wear a tight fit mask. Both of the x-ray results were fine, they didn’t notice any infection in the chest region. During the night Kacie had to get up several times with diarrhea. She also had to get Phenergan for an upset stomach. It was a very long night since she wasn’t feeling well. When they checked her CBC (complete blood count) this morning, her hemoglobin had gone down from 8.4 yesterday to 6.6 today. The doctors were concerned and they retested and got the same results. They had to give her a red blood transfusion. Her platelets had also dropped to 38,000. They want to keep Kacie’s platelets above 50,000 since there has been blood in her urine. So she also had a platelet transfusion this morning. Dr. Wagner, the doctor responsible for this Fanconi Anemia protocol, is now the attending physician for Kacie for the next couple of weeks. We are excited since the next two weeks will be the most crucial period. He said that he had not expected Kacie’s blood counts to come up prior to the transplant, since he had to stop the Oxymetholone medication that she was on a month before transplant. The Oxymetholone is an anabolic steroid that is used to help the blood counts go up. Kacie still has a lot of pain from the mouth sores, her throat, and her upper and lower GI tract. She is learning to push her Morphine pump in order to help with the pain. Since she has had a lot of pain, they’ve increased the volume of Morphine that she can receive. Kacie’s blood pressure and her high fevers finally came down some today. She still slept a lot, but she did watch a “Mary Kate & Ashley” show and got up to take her bath. They tested the glucose in her urine again, and it was higher so they are monitoring it carefully to determine when she may need to start insulin. In her blood tests for chemistry levels, her Potassium level was high so they have decreased some of her daily TPN (nutrition). Her Calcium levels were low so they had to test her Ionized Calcium levels, which were on the lower end of normal so they are planning to give her calcium. When they tested her hemoglobin this afternoon, it was only at 9.6 and Dr. Wagner decided to keep this value above 12.0 for Kacie since she dropped so quickly. They gave her another red blood transfusion. This time she reacted to the blood product and broke out in a rash, so they had to give her Tylenol and a double dose of Benadryl. They had to stop giving her the red blood and will retest her blood levels to see if they need to transfuse her again later. Since she reacted to the blood, they will have to test the blood product that she received and they will test her blood. This is more for precautionary measures. She also had chills and her temperature went back up to 101.8° F. According to the doctors, she may have even more pain and side effects within the next few weeks. This is normal right after a bone marrow transplant and the doctors will continuously monitor every aspect of her health and make changes as needed. In completing this update, the nurse just told us that Kacie’s hemoglobin is at 11.9, since they want it at 12.0 we are waiting to her whether the doctor wants them to give her another red blood transfusion this evening. Please continue to keep Kacie in your prayers; these are some very difficult days. Smiles & Giggles, Donald, Kathi, & Kacie
October 15, 2001 - Day +4 - Persistence...
Last night Kacie decided to take her own blood and administer the medications that she needed. She is becoming a real medical expert. This picture is Kacie with her night nurses, Courtney and Kristen. Persistence is the best way to describe the way Kacie reacted to today’s events. When Kacie woke up this morning, she had diarrhea. They had given her Lasix last night, which is used to help someone urinate. Kacie had a strong urge to urinate, but couldn’t. She sat for a very long time and was getting very frustrated. When the doctor came in to examine her, he explained that the Morphine could be causing her to not be able to go. He also said that if she was having problems going to the bathroom, then they might need to put a catheter in. Knowing the pain that she would endure, we asked for alternative solutions. Kacie must have decided that she didn’t want a catheter either because she was persistent and extremely determined that she would go on her own. The doctor did change the Morphine to another narcotic, in hopes of alleviating this problem. After trying for 3 ½ hours, she finally was able to go a little. They have ordered cultures of her urine to test for urinary (or bacteria) infections. Now that the pain medicine was switched, it took some time to determine what the best level would be to control Kacie’s pain in her mouth and throat. She pushed her pain medicine more than it would allow today and they kept increasing the levels. The sores in her mouth are really bothering her. She was also given a “magic mouth wash” that numbs the mouth and that seemed to help some. Kacie had to have another red blood transfusion and platelet transfusion this morning. Prior to getting any blood product, they give her pre-medications to help keep her from having a reaction. Unfortunately, she reacted to both of these blood products and they had to stop the platelets midway through because of the rash. They have contacted the blood bank and are running tests on Kacie’s blood as well as the blood products that she is receiving to determine why she is reacting to them. They may need to start matching more of the antigens in the blood products to her blood prior to giving them to her. Her calcium levels were still low this morning, so they had to give her more calcium. Her potassium level was back up in the normal range and they have started her back on the TPN (nutrition). They tested her blood-clotting factor since her hemoglobin had dropped from 8.4 down to 6.6 the other day and she has blood in her urine and stools. The blood-clotting factor came back low; which means that she is having a hard time with clotting. They are giving her vitamin K to help bring the clotting factor back up. Blood pressures have been good today and temperatures have been on the mild side. She seems to have an appetite, but her mouth sores are preventing her from eating like she wants. She is holding fluids and her feet, legs, and her eyes are swollen today. She has noticed another side effect of the chemo and radiation, which is hair loss. This really upset her. She is also fussing with us quite a bit, but the doctors and nurses have explained that the heavy medications will cause her to behave this way. Kacie’s teachers tried to meet with her today on several occasions, but Kacie didn’t feel good at any of the visits. We met with her regular teacher and discussed some additional ways of working with Kacie during the times when she does feel better.
Kate Montgomery came by this evening to visit with Kacie and she brought her some Halloween goodies. She offered to sit with Kacie so that we could get some dinner, but Kacie was feeling badly and didn’t want both of us to leave. Kate is our volunteer from Care Partners, and she works at the National Bone Marrow Transplant center. It is a blessing to have someone offer to help us in so many ways. This is a picture of Kate with Kacie. Each day all the information that we receive is extremely overwhelming. It is now 10:00 p.m. and Kacie is resting comfortably. Hopefully, she will get good rest this evening and not wake up multiple times. Tomorrow someone from Physical Therapy will be bringing a bowling set in so that she might get up and have some exercise. Please continue to pray for Kacie’s healing. We are going into day +5 tomorrow… Smiles & Giggles, Donald, Kathi, & Kacie October 16, 2001 - Day +5 - Kacie Has An Appetite... This has been an extremely exhausting and difficult day for all of us. Kacie was up with diarrhea and lots of pain throughout the night. Around 4:30 a.m. she was vomiting blood. This scared us quite a bit. The doctors explained that it is from the sores that are in her esophagus and down to her stomach. A lot happened today and we’re exhausted, so we’ll just provide a quick summary of the major events. The doctors came in to discuss some concerns they were having with some of the different test results; such as her blood clotting factor, high temps, glucose, swelling, blood loss, yellowish eyes, high bilirubin level, etc. They informed us that they wanted to test for Veno-Occlusive Disease (VOD) of the liver. This disease is not something that they can treat but they can only aid in treating the symptoms that it causes. The disease has to run its course. This was some very devastating news to wake up to. They did ultrasounds on her liver, kidneys, bladder, etc. The doctors came in after the x-rays were read and thankfully, Kacie does not have VOD. They had to start Kacie on insulin since her glucose level is high. They gave her the insulin, then retested two hours later and the glucose level was still high, so they are increasing the amount of insulin and will continue to monitor the levels. Kacie’s platelets were only at 13,000 this morning, so they gave her platelets. When they retested her platelets, it had only gone up to 25,000 and Dr. Wagner wants to try to keep her above 50,000. They are giving her additional platelets this evening and then will retest to see if they went up. Kacie’s hemoglobin was 13.1 today, which is good and she didn’t have to get transfused with red cells. The doctors talked with the blood bank and they had tested all the blood products that Kacie reacted to, but there were no signs of bacteria or anything that would have caused a reaction. They are now testing Kacie’s blood to determine all the antigens and whether they may need to match the blood products more closely to her blood antigens. There were a lot of changes in medication due to different levels being out of the normal ranges. It is almost 9:00 p.m. and Kacie will be going for a CT scan of her chest, abdomen, and pelvic areas. The most interesting thing is Kacie has an appetite. The doctors have changed her to clear liquids since she is having so much pain and having fluid retention. She has been frustrated because she can’t eat. Most children going through transplant don’t have an appetite, but Kacie has been very hungry and she wants “real” food not just liquids. Please continue to pray for Kacie, and especially that the pain medication helps keep her pain under control. Smiles & Giggles, Donald, Kathi, & Kacie October 17, 2001 - Day +6 - Got Milk???... Nobody is ever prepared for the struggles and the roller coaster ride that you are on when you have to go through a bone marrow transplant. Everyone’s experience with dealing with these struggles is so different. We are seeing first hand the many challenges that one might face. It is heartbreaking to watch these young children suffer through the many side effects of radiation and chemotherapy, not to mention dealing with issues from their individual illnesses. We are sleep deprived and so I’m summarizing the major highlights of today. On the positive side, Kacie has really wanted to eat and also keeps asking for milk. The doctors have wanted her to stay on clear liquids without any milk products until they can figure out her fluid retention issues. Kacie has tried every approach possible to try and convince the doctors to let her eat and drink milk. It is sad to watch her plead for food and milk. She has even told them that if they don’t allow her to eat, then she’ll never get better because you have to eat to get better. She is very smart with her logical reasoning. We are so thankful that she does have an appetite and we hope that it continues. Most patients will lose their appetite. Yesterday Kacie had a lot of pain in her spine area. She woke up with the pain in her neck region, headaches, plus her temperature went up to 104° F. The doctors came in and examined her and decided they needed to test for spinal meningitis. Based on the examination, Dr. Wagner felt it best to determine whether or not we are dealing with meningitis. Again, this was very difficult news for us, but we are watching Kacie struggle with a lot of pain and we are hopeful that they will be able to resolve it soon. They did a spinal tap to extract some spinal fluid so they could send it to the lab. The doctor said that on initial look at the fluid, it wasn’t cloudy so he felt it was probably negative to meningitis. After waiting an hour for the preliminary lab results, which seems like forever, we got word that the preliminary results didn’t look like meningitis. At this point we were very excited, only to get a call around three to four hours later from the lab to say something had started to grow in the culture. According to the doctor, the bacteria that were growing appeared to be the same type of bacteria from skin, which could mean that the needle get some skin contamination upon exiting the spine. At this point we are very concerned, as well as the doctors, so they have changed to an antibiotic that will help treat spinal meningitis in case it comes back positive. We may not have official results until late tomorrow evening or even Friday. They will continue to grow the culture and then examine whether it is a form of bacteria that means meningitis. Waiting for answers is very hard. Other events of today included: They have adjusted her insulin level to help with the glucose issues. She had to receive platelets. She has gotten thrush in her mouth, so they are treating it with nystatin. After the spinal tap, Kacie was successful in convincing the doctors to allow her to drink some milk. They decided to let her have lactose free milk. Kacie was excited and drank quite a bit. Kacie’s friend, Cole, came by to visit and waved through her window. This was the first time we really saw Kacie smiling today. Cole is scheduled for another bone marrow aspiration on Monday to determine whether he has developed a small bit of graft vs. host disease to help fight off the leukemia genes that they have found recently. In closing, please keep praying! Pray for Kacie and all the other children and families that are struggling through some very difficult situations. We need healing and we need strength. God Bless each and every one! Smiles & Giggles, Donald, Kathi, & Kacie October 18, 2001 - Day +7 - Spinal Meningitis???... The day started at 3:00 a.m. when Kacie woke up in severe pain in her neck and head. She was still having fluid retention and constantly wanted to go to the bathroom. This was very difficult because she was having so much pain holding her head up. She was also very nauseas. Since she had been laying flat on the bed, without a pillow, she was very swollen in her face and neck area. As was mentioned on the website yesterday, Kacie had a spinal tap to test for spinal meningitis. The doctors came in very early this morning to let us know that Kacie did test positive for bacterial spinal meningitis. The lab was very responsive in notifying the infectious disease specialist. She immediately made a decision (at 7:00 a.m.) on what antibiotics to start Kacie on. The doctors explained that this is very serious and they can only make an educated decision as to the appropriate antibiotics until the sensitivity tests are complete. Sensitivity tests are where various antibiotics are tested with her spinal fluid to determine which ones are the fastest acting to fight off the bacteria. Some antibiotics don’t penetrate into the spinal fluid, so they will not work. They are hoping to have the results back in the morning. It takes time to check the reaction times and effectiveness of the antibiotics against the spinal fluid. The infectious disease specialist feels the antibiotics that she has suggested should help until the final results come back. They examined and monitored Kacie closely all day. Her fever was very high, as high as 105° F. They gave her Viox; which is a one time dose of medication that should bring down a persistently high fever. The reason it is only a one time dose is because it destroys platelets and she is already having to been transfused with platelets about twice a day on average. She had to have a red blood transfusion since her hemoglobin had dropped to 10.2 and they want to keep it above 12. They increased her pain medicine; which helped her fall asleep. The doctors explained that it wouldn’t get rid of the pain in her neck and head though. We watched Kacie for the better part of the day in great pain. We kept putting ice packs on her head, face, neck, back, and legs to help with the pain and to help get her body temperature down. She finally dozed off into a good sleep for quite some time. Around 4:00 p.m., the infectious disease specialist came in to discuss everything with us. She explained that it is very rare for someone going through bone marrow transplant to get meningitis. She was surprised that this had happened to Kacie since her initial evaluation of Kacie (prior to transplant) was really good, and she had not made any recommendations for treatment at that time. She explained that Kacie has mucousitis which is a bacteria that grows in the mouth in most all bone marrow transplant patients due to the volume of radiation and chemo that they received. The mucousitis bacteria had entered through the open sores in her mouth into the blood stream and found its way into the spinal fluid. The confusing part is that the doctors have been culturing Kacie’s blood every day due to the high fevers, and the cultures never showed any sign of infection. We feel extremely blessed that the doctors had the foresight to test for spinal meningitis. At the time, the doctors even made the comment that they are over cautious, but with transplant patients that need to be. We are also thankful for the lab specialists and the infectious disease specialist for responding so quickly. This was definitely a very difficult day, emotionally and physically. Kacie is showing some improvement with body temperature and pain control this evening. The doctors feel this is a positive sign that the antibiotics may be working to fight off the bacteria. Please pray that they have the spinal meningitis under control and that Kacie starts feeling better. Smiles & Giggles, Donald, Kathi, & Kacie October 19, 2001 - Day +8 - Another Spinal Tap... Tonight the updates will be short since we are very exhausted and need to be alert for Kacie when she wakes up. We’ll try to update with more of the details tomorrow. Kacie woke up a little disoriented this morning. Her neck and head were still hurting. She started sleeping and really got into a good sleep. Her temperatures were responding to the antibiotics that they started, but some of the other symptoms did not improve to our liking. The doctors were hoping she would be more responsive and would not be holding her head back really stiff. We met with the infectious disease specialist again. She had gotten the results back on sensitivity tests. They had tested a variety of different antibiotics with her spinal fluid to determine which would work best. They were hoping to have at least six antibiotics to choose between, but the tests results only yielded two. Fortunately, they had already put her on these antibiotics and that was why we were seeing improvement on the high fevers. They plan to test another series of antibiotics to see if they find additional antibiotics to use as well. The infectious disease specialist examined Kacie and was concerned with the way she was still holding her head back. This could mean that it is inflamed. She recommended that we force the antibiotics into the spinal fluid so that we will see a quicker reaction. They decided to do another spinal tap and draw more fluid to test, but they also injected one of the antibiotics directly into the spinal fluid. They feel that we should start seeing improvements each hour. Our prayers are that Kacie sleeps well tonight and wakes up early either wanting to eat or wanting to play a game. It would be nice to hear her wake up at 4:00 a.m. wanting to play monopoly. Although it would be extremely early and we are very tired, it would really give us a boost of energy to see her feeling better. The doctors are deciding whether they will need to inject the antibiotics into the spine for around seven more days. If so, they are consulting with the anesthesiologists to determine if a catheter should be put into her spine so they don’t have to keep doing spinal taps. Kate Montgomery, our care partner and a wonderful new friend, came by this evening and sat with Kacie so that we could go out for a little bit. This was the first time I had stepped out of the hospital and it felt great! We walked back to the Ronald McDonald House and then drove to the Baker’s Square, which is a family style restaurant. We ate dinner, and then walked back to the hospital. This was so relaxing after going through the last few days of a lot of stress. We really appreciate Kate being here and helping out when we needed it. Time to call it an evening… We are looking upward and forward to day +9. Start praying for a “WHITE BLOOD COUNT”. Kacie needs to get these in soon so that the white cells can help fight off this infection. The normal time for starting to get white blood cells is around day +12 to day +14. We are praying that Kacie is rare in this case and gets them even earlier. Thanks again for everyone’s support and prayers. Smiles & Giggles, Donald, Kathi, & Kacie October 20, 2001 - Day +9 - Test Of Faith... Thank you to everyone who is so faithfully monitoring this site. We apologize for not updating the page sooner; it is now 10:00 a.m. on Sunday. The day was extremely stressful and we have decided to limit our detailed updates. Please understand that this is best for our family at this time. Please continue to pray for Kacie. God hears us and has been answering our prayers. Now we are praying strongly for healing and to start seeing white blood cells. We have continuously prayed for the doctors and nurses to have the knowledge, skills, and foresight to make the right decisions. God has provided us with the best set of doctors and nurses that we could ask for. We are extremely thankful. Kacie is sleeping peacefully on an air mattress this morning. Donald and I finally got a little sleep late last night. We are always thanking God for the many blessings and support from all our friends, family, and the new friends we have been making. Please know that we appreciate everything from the bottom of our hearts. We are very behind in sending thank-you notes, but understand that we truly are grateful. Pray for “HEALING” and pray for “WHITE BLOOD CELLS”. God Bless everyone. Smiles & Giggles, Donald, Kathi, & Kacie October 21, 2001 - Day +10 - Pray for "WHITE BLOOD CELLS"... Thanks to everyone for all your prayers! It really helped for Donald & I to finally get a little sleep last night. Donald has already fallen asleep in a recliner. As soon as I finish updating the website, then we will go on to bed. Kacie needs white blood cells to start showing up. They don’t really count them until they are above 100. We are praying that Kacie will get them early. Starting tomorrow would be great. And we are praying that they multiply quickly. Please continue to keep her in your prayers. Also, pray for the other children on this unit. These children are amazing. Please keep Cole in your prayers; he will be having a bone marrow biopsy and a hernia surgery tomorrow. Thanks and keep praying! Smiles & Giggles, Donald, Kathi, & Kacie October 22, 2001 - Day +11 - "WHITE BLOOD CELLS"...Prayers Answered... Prayer is powerful when we all come together. Many miracles are happening and God is answering our prayers. We prayed for white blood cells and Kacie’s white blood cell count came in today at 100. The way they count blood cells is <100, then 100, 200, 300, etc. If she actually has 199 white blood cells, it would be recorded as 100. We were extremely thrilled. Now we need to pray for the white cells to multiply. White blood cells will help her heal faster. We feel extremely blessed to have such a wonderful team of doctors and nurses taking care of Kacie. Keep praying for Kacie and her quick recovery. Smiles & Giggles, Donald, Kathi, & Kacie October 23, 2001 - Day +12 - A Day of Progress... We’ve had another long day, but there has been some positive progress. Kacie’s white blood count was 100 again. She really needs her white blood cells to multiply. The waiting is so hard. We want to see immediate results, yet we are learning patience. So far the spinal fluid cultures have all been negative; which means they aren’t seeing any bacteria growing. This evening we got the news that the gram stains (microscope tests) showed negative for the first time. The gram stains are where they take a sample of her spinal fluid and examine it under the microscope and check for bacteria. The gram stains have shown positive up until today. They can’t tell whether the bacteria were alive or dead, but the white cells help to remove them from the spinal fluid. This was excellent news for us. Kacie still needs you to continue to pray for her recovery and for her white blood cells to multiply. There are fourteen rooms on this unit and each of these children needs your prayers. The family support that we have received from the parents and other relatives has been wonderful. We are blessed to have met so many caring individuals. God Bless and Keep Praying! Smiles & Giggles, Donald, Kathi, & Kacie October 24, 2001 - Day +13 - Praise God...500 White Blood Count... Late last night we heard that Kacie’s gram stain (microscope test) of the spinal fluid came back negative for the bacteria. This doesn’t necessarily mean that all the bacteria are gone, but it is a very good sign. We were thrilled! This morning her white blood count came back at 500! This is also very good news. The white blood cells were all neutriphil cells. Neutriphil cells are used to kill bacteria. These are exactly what she needs. Our prayers are being answered and we are learning patience in the meantime. We still have a lot more prayers to be answered. Well, as I’m writing this update it is snowing! It is so hard for us to believe that we’re seeing snow in October. Hopefully, it won’t get too cold. Thanks to everyone for the many cards, letters, emails, etc. It is so encouraging to know we have so many people praying and supporting Kacie and us during these times. Please continue to send us these to help keep our spirits up. We really appreciate receiving them. Also, the phone cards have been greatly appreciated. Again, continue to pray for all the children on this unit. Please pray for Kacie’s white blood cells to multiply ten-fold. Her gram stain this evening was positive, meaning there were bacteria (may be dead bacteria) found on the microscope slide of her spinal fluid. Pray for the bacteria to go completely away and pray for complete and total healing of Kacie. Smiles & Giggles, Donald, Kathi, & Kacie October 25, 2001 - Day +14 - Some Progress... Kacie’s white blood count came back at 100 today. The drop in white blood cells may be due to the fact that they are fighting off the bacteria. The spinal fluid gram stain came back negative again tonight and all of the cultures on her spinal fluid are still negative. This is good news since it probably means the meningitis is going away. She still has a long recovery. We’ve seen some good progress today. Each day we see a little more progress. It is extremely cold here, around 30° F. It only snowed a little, not enough to cover the ground. There were very high winds today. Donald and I were taking the shuttle back from the Ronald McDonald House today when the wind really came through strong. We were between two of the hospital buildings and one of the passengers in the shuttle was opening the door and the window burst out. Glass got in the shuttle driver’s eye and she had inhaled some of the glass. We drove her over to the emergency room. The doctors were able to get the glass out of her eye. Some of the glass had scratched her eye, but they thought she would be fine. They were also going to run a scan of her throat. Thank you to Erin & Mrs. Morgan’s English class for the wonderful smiley face letters. Each student made a smiley face and then wrote a letter to Kacie on the back. We are planning on hanging them up in her room. They really help to get us smiling. Please keep Kacie in your prayers and pray that her white cells multiply and that we continue to see progress. Smiles & Giggles, Donald, Kathi, & Kacie October 26, 2001 - Day +15 - A Special Card... Kacie’s white blood count is 500 again! The gram stain from last night was negative! We are so excited!!! Kacie is showing some more progress today. Each day is like taking baby steps, but we are extremely happy at the fact that she is making positive progress. All of the karate training that she has been through is really showing in her strength and self defense methods that she keeps trying. This strength and determination is what is helping her recover from the meningitis. Kacie is now on day +15 and within the next few days she is at greater risk for graft vs. host disease (GvHD). Since she has had several rashes already, the doctors have increased a medication (called CSA), which helps with GvHD. Please pray that she doesn’t develop GvHD on top of what she has already had to endure. We are counting upward, tomorrow being day +16, and we are hopeful that her white blood cells will multiply and her gram stain remains negative. Please continue to pray for her recovery. We got some very good news today! We were so excited when we received a card from Kacie's donor. In her message, she stated that she was glad to recieve the gifts that we sent and she is looking forward to meeting us. This was very exciting news. We were praying that the donor would want to meet Kacie someday. We have met some wonderful families on the bone marrow transplant unit. We met Caleb Glover’s parents and they have been very helpful to us during these difficult times. Caleb has fanconi anemia and he is on day +22 today. He was released from the hospital today. Please pray for his continued recovery. All of the children on this unit need our prayers. Please pray for Kacie’s healing and recovery and pray for all the other children on this unit. Smiles & Giggles, Donald, Kathi, & Kacie October 27, 2001 - Day +16 - Good CT Results... Kacie’s white blood count was at 500 again today. Her spinal fluid gram stain came back positive today, but was reported as rare. This probably means that there are still some bacteria that are being purged from the spinal fluid. Rare could mean as little as one spec. Kacie wanted me to read to her today, so we read “The Jester Has Lost His Jingle”. We both love this story. The Children’s Hospital of the King’s Daughters gave Kacie the doll, Jester with his friend Pharley. Kacie loved hearing this story and holding these dolls. If you haven’t read the story yet, you should because it definitely puts a smile on your face. Kacie had another CT scan today and some of the inflammation has come down. This is very good news. We are hopeful that we continue to see positive progress each day. Please continue to pray for Kacie and the other children on this unit. Cole Smith really needs prayer. He is having several medical struggles and we need God to heal him as well. Caleb Glover was released from the hospital yesterday; please continue to pray for his recovery. I know that we keep asking for prayers, but prayer is powerful. It is hard to explain what these children are going through. There are several very rare circumstances that these doctors have to deal with right now and we need some miracles from God. Thanks again for everyone’s support and prayers. God Bless and have a blessed day! Smiles & Giggles, Donald, Kathi, & Kacie October 28, 2001 - Day +17 - Rise And Shine... Kacie woke up in a very good mood this morning. She was talking more today. Kacie and daddy had a long conversation. Then she wanted to watch the movie “Parent Trap”. She loves that movie. We’ve seen it lots and lots of times. We didn’t mention yet, but we had to find an apartment. They are doing a lot of construction at the Ronald McDonald House and need to tear out one of our walls. Since one real big risk for Kacie is fungal and mold infections, we wanted to find a more sterile environment for when she will be released from the hospital. We know that it is still some time before she will be released, but we were on a very long list for an apartment and we were advised not to pass it up because we may not be able to get one later. We did find an apartment, but we won’t be moving into it until Kacie is much better. We have been living in the family lounge at the hospital for over a week now. We even take our showers at the hospital. We are looking forward to when we finally get settled and have Kacie back at the apartment. Kacie has to get platelet transfusions most of the day. Sometimes after receiving platelets she still gets a lower count. They have to monitor her platelet counts very closely. The doctors want her platelet count to be at 100,000 or above. She usually ranges between 35,000 and 80,000. Kacie’s white blood count is at 400 today. In order to be considered engrafted, her white blood count has to remain at 500 or above for three consecutive days. We believe her counts dropped a little so that they could help fight the infections. Please pray for the white blood cells to multiply. Pray for her temperature and blood pressure to stay down. Pray for a full recovery. Again, we need the angels on this unit to help these children. There are some very critical and rare situations and these children all need special healings and miracles. God is blessing Kacie with many miracles. Please continue to pray, God is listening to our many prayers. Smiles & Giggles, Donald, Kathi, & Kacie October 29, 2001 - Day +18 - Rough Tummy Pains... Kacie stayed up last night until 1:00 a.m. with a bad tummy ache. Then she woke up at 4:00 a.m. with more tummy aches. Kacie is having bladder spasms and nausea; which has caused her to complain of a lot of pain all day long. They tried several medications, but she never seemed to be comfortable. They even tried a sedative to help relax her. Dr. Wagner ordered an ultrasound of her bladder and kidneys and an x-ray of her abdomen. The technicians brought the equipment into her room so that she wouldn’t have to be transported to the radiology department. Both of the results came back normal. They will probably order a CT scan tomorrow. Kacie is still recovering from a bad case of mucusitis; which is mouth sores, as well as sores throughout the entire GI tract. The mucusitis, plus the bladder spasms, could be what is causing the stomach pains. Kacie’s white blood count came back at 700 today!!! This is good news and we are hoping to see it climb higher tomorrow. Her platelet count went as low as 14,000 today. The doctors are increasing the amount of platelets that she receives and requesting fresh platelets from the blood bank. The doctors are discussing putting her on a continuous drip of platelets if they can’t get them up to 100,000. Today has been a long day, so we are going to try and get Kacie to sleep. They may need to give her a sedative to help relax her enough to go to sleep. Please pray that her tummy aches disappear and that her white blood count multiples greatly. The sooner the white blood cells start multiplying, the sooner she will start feeling better. In several of our updates, we’ve asked that you pray for the children on this unit. Tonight, we especially need you to pray for two boys, who are both sixteen years old, and another boy who is eight years old. These boys’ names are Wade, Jonathon, and Trevor. Also, remember to keep Cole in your prayers. They are in need of special prayers and healing. Thank you for all your many prayers and support. Please remember to keep Kacie in your prayers and ask for quick healing and an abundance of white blood cells. Also, pray that Kacie’s platelets start rising and reach 100,000. Smiles & Giggles, Donald, Kathi, & Kacie October 30, 2001 - Day +19 - An All Nighter... Kacie had a very long day. She did not go to sleep at all during the night. At 6:00 p.m. tonight she finally went to sleep after being awake since Monday at 4:00 a.m. She had a lot of pain in her abdomen throughout the night. The doctor (fellow) that was on duty last night came in several times to check on her and to try to soothe her with different medications. They’ve had to increase her pain medicine to a real high level. She is starting to build up a tolerance to the pain medicine so they have to keep increasing it to a level that will hopefully control the pain. The doctor ordered several tests to check different organs within the abdomen. She had another ultrasound test done today and everything came back normal. Then she had to go to radiology for a CT scan. The CT scan mainly showed a lot of inflammation in the esophagus, bladder, and colon area. Since Kacie had such a bad case of mucusitis, the doctors believe she has it in the entire GI tract and it will take time and white blood cells to help heal the inflammations. They are going to try another new medication tonight that helps with cramping. Hopefully, Kacie will be able to sleep through the night. We are starting to feel the effects of sleep deprivation. Kacie has a nurse in her room at all times. Last night was a very busy night since she was in so much pain, plus she had to get platelet transfusions. When Kacie went to have her CT scan, Woody (from Toy Story), Batman, and the Hershey Kiss all came to see her. They gave her lots of candy and they had their picture taken with her. Governor Ventura’s office also sent over a big bucket of candy to Kacie. Kacie’s white blood count was at 900 today!!! Her count is climbing. The gram stain of her spinal fluid was negative last night; which is also good news. Please help us in praying for all the children going through the bone marrow transplant process. Every child’s experience and circumstance is different, and each one needs prayer to help guide them through the process. Please continue to pray for Kacie’s white blood count to multiply and pray that her stomach pains all disappear so that she can get some much needed rest. Smiles & Giggles, Donald, Kathi, & Kacie October 31, 2001 - Day +20 - Reverse Trick-or-Treating... Donald decided to make Kacie our “Princess/Angel”, so he bought a princess outfit and an angel outfit. Kacie wore the princess outfit and crown and the angel wings. She is so beautiful in her outfit and she really loved it. One of the other patients, Maddie, sent her a special wand and another crown. The doctors loved seeing her smiling and all dressed up. Tonight is Dr. Wagner’s last night on this unit; he will be going back to clinic. The resident, Mary, is also leaving today. The fellow, Martin, left the unit on Monday. Dr. Orchard starts on duty tomorrow. It was great that Dr. Wagner and Mary were able to see Kacie doing a little better. Dr. Wagner, Mary, and Martin all worked really hard this past week in diagnosing and treating her bacterial spinal meningitis. We will miss having them visit each day. The bone marrow transplant unit played reverse trick-or-treat today. This is where the doctors, nurses, social workers, care-partners, etc. would come knock on her door and we would have to say trick-or-treat, then they would give her candy. Kacie got so much candy today. More than she would have ever gotten if she had walked around door to door. She can’t eat the candy yet, so we will save it. She is going to share it with her sister, Erin. A lot of different characters came by to visit Kacie. She had such a good time.
Kacie decided to have the policemen, that came to visit her, arrest her daddy since he kept sneaking candy from her Halloween pumpkin. She thought that was so funny. Everyone tried to really brighten the children’s spirits by having so much fun things going on. We had a pizza party with chili and lots of desserts and candy. It was nice to be able to sit down with various parents and nurses and have a few minutes to relax. We have met so many wonderful parents and it was great to have time to talk with them. The really big news of the day was that Kacie’s white blood count is now at 1300!!! YIPEE!!! That makes three days in a row that she is over 500, so she is now considered engrafted. Please keep saying your prayers for Kacie she is definitely improving. Smiles & Giggles, Donald, Kathi, & Kacie
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