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Our Journey - Archives

April, 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.

Updates:

Diagnosis and Beginnings
September, 2001
October, 2001
November, 2001
December, 2001
January, 2002
February, 2002
March, 2002


April 1, 2002 - Day +172 - Kacie's Determination & God's Blessings...
April 2, 2002 - Day +173 - Kacie Is Waking Up More...
April 3, 2002 - Day +174 - One Day Closer...
April 4, 2002 - Day +175 - Another Adventure...
April 5, 2002 - Day +176 - Late Night...Late Update...
April 6, 2002 - Day +177 - The Ventilator Tube Is OUT!!!...
April 7, 2002 - Day +178 - Blood Culture Results...
April 8, 2002 - Day +179 - God's Blessings...
April 9, 2002 - Day +180 - Kacie Smiles...
April 10, 2002 - Day +181 - Kacie's Personality Shines Through...
April 11, 2002 - Day +182 - Emotional Trials...
April 12, 2002 - Day +183 - Kacie Is Communicating...
April 13, 2002 - Day +184 - Too Tired To Write...
April 14, 2002 - Day +185 - Pray For Good Biopsy & Test Results...
April 15, 2002 - Day +186 - Emotionally Draining...
April 16, 2002 - Day +187 - More Medical Challenges...
April 17, 2002 - Day +188 - Smiles & Giggles...
April 18, 2002 - Day +189 - Sleepless In Minnesota...
April 19, 2002 - Day +190 - Stop The Clots...
April 20, 2002 - Day +191 - Finally, A Little Rest...
April 21, 2002 - Day +192 - One Year Ago Today...
April 22, 2002 - Day +193 - Lots Of Prayers Needed...
April 23, 2002 - Day +194 - Unexpected Surgery Tomorrow...
April 24, 2002 - Day +195 - Back From Surgery...
April 25, 2002 - Day +196 - White Cells Are Critical!...
April 26, 2002 - Day +197 - Please God...Intervene...
April 27, 2002 - Day +198 - The Gates Of Heaven...

April 1, 2002 - Day +172 - Kacie's Determination & God's Blessings...

Kacie always seems to amaze everyone with her determination. She has been more awake today. Moving her little arms, moving her legs some, and even biting and grabbing at the ventilator tubing in her mouth. She looks at us with her little eyes showing the determination to win. God is truly blessing Kacie right before our eyes.

The doctors are very pleased with Kacie’s progress from yesterday until today. Kacie is starting to come out of the sedation and she is showing signs of strength.

Kacie had an EEG (brain wave test) today. It didn’t show any signs of seizures. The results did indicate tremors; which the doctors determined was due to the amount of narcotics or sedatives within her body. They are continuously reducing her sedatives to wean her completely off of them.

They took off 1.5 lbs. of fluid during dialysis. Her weight is not increasing a whole lot each day. Her temperature went as high as 102.4° F. She has developed a slight rash that has the appearance of water blisters. The doctors took a sampling from the rash to send to the lab.

Kacie’s white blood count is 400 today. We were excited to see this number increase from yesterday.

We met with one of the BMT doctors today concerning the MRI results and the overall plan for Kacie’s medical care. Basically, all the doctors believe Kacie’s clinical status is the most important information in determining how they should treat her. There were some disagreements with the MRI results; however, now that Kacie appears to be responding more and showing signs of strength, the doctors have decided that the subtle changes on the MRI may not have been changes after all. It is difficult when viewing the different MRI scans for determining changes unless they are major differences. If Kacie had not improved at all, then they would be deciding to do a biopsy of the brain tissue. Kacie has been blessed again, and the doctors are planning on just keeping a close eye on her progress. They are even questioning whether she really had seizures yesterday or not. She is so difficult to diagnose since she is so weak and still under sedation.

Thank you to everyone who prayed so hard for everything last night and today. God is blessing Kacie each and every day. We are so grateful to him for watching over her. Please continue to pray for Kacie, as she still needs prayer. She still has several very critical issues; however, we are seeing God’s miracles moment after moment.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 2, 2002 - Day +173 - Kacie Is Waking Up More...

Kacie is still showing improvement. She is more and more alert as they keep decreasing her sedation medicines. She has been bringing her arms up and even rubbing her face with her hands. Kacie is still very weak but she is definitely showing a lot of improvement in her overall strength.

Kacie had a skin biopsy again today. She had a rash that appears like water blisters, usually due to a fever. This is the same type of rash she had before. The rash has gotten better in the last couple of days, but the doctors wanted to rule out signs of a new virus so they ordered a skin biopsy to be done. We should get the results back tomorrow.

They were able to take off about 2 lbs. during dialysis today. Her chest x-ray this morning still looked good. During the evening they ordered another x-ray because her left lower lobe of her lung sounded more diminished than the right side. The x-ray still looked good and the ventilator tube was positioned correctly. The nurse suctioned her out more and her lungs sounded better.

We received the results back on the Epstein-Barr virus. They are following this virus closely since it can lead into post transplant lymphoma disease (PTLD). Every Monday they send off a blood test to a lab in Virginia and then it takes a little over a week to get the results back. The first test showed 5700, the next showed 5600, and then the results that came back today showed 4500. This is after only one treatment of the medication to help with this virus. We were excited to hear that the results came back lower.

Kacie is scheduled for another CT scan tomorrow of her chest, abdomen, and pelvis area. They will be checking all her organs and the lymph nodes within these areas. It is important that they keep looking for infection since Kacie has continued to have fevers. She is on several different antibiotics so that she has a good broad coverage for most infections.

Erin has been having a great time being here with us. Even though Kacie is still intubated, Erin has enjoyed being here where she can hold Kacie’s hand and talk with her. Erin is so full of energy and we know that Kacie loves to hear Erin’s voice in the room.

We are very blessed and honored to have a local chapter in Virginia of the American Red Cross hold a blood drive in Kacie’s honor. This is very important to us. Kacie has needed blood products every day and we are so grateful to everyone who continues to donate blood through the Red Cross. Please check out the link How To Help to discover how you can help by giving the gift of life.

Please keep all of these children in pray. Pray for Caleb, the doctors believe that he has pulmonary hypertension. Pray that his lungs strength and he can be weaned off the oscillator. Pray for Kacie to continue to improve. Pray that all infections leave her body, pray that all her organs heal, and pray for her overall health. Once again, we thank you for following in Kacie’s journey and praying for her total healing.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 3, 2002 - Day +174 - One Day Closer...

Kacie’s white blood count (WBC) increased to 600 and her absolute neutriphil count (ANC) showed up at 200. We are thankful that these counts increased today. We are hopeful that it is a sign that her boost of donor cells has started to come in.

Kacie stayed awake all during the night last night. She probably has her days and nights mixed up. We tried to get her to sleep some today, but she was wide-awake. She was probably trying to prove to us that she is doing better. She is moving around even more. She loves to bring her hands to her face, maybe to try to pull the tube out. During the time that the ICU and BMT doctors came in to examine her, Kacie kept moving around as if to let them know that she is ready to be extubated. The ICU doctor explained that he believes she is ready, but he would rather give her a little more time. Hopefully, she might get the tube out tomorrow.

Kacie had an early start this morning. She was scheduled at 6:30 a.m. for a CT scan of her chest, abdomen, and pelvis area. The preliminary results of the scans showed that the lungs looked better and the kidney and liver looked the same as the last scan. They didn’t notice any lymph nodes that were enlarged to indicate a possibility for post transplant lymphoma disease (PTLD). The spleen still looked similar to the last scans, but they described a striping affect from the contrast dye that they injected during the scans. The BMT doctors have asked that the radiologist accurately measure each of the organs to determine if they have decreased at all in size. Plus they are waiting for the final report on the condition of the spleen. We are expecting these results tomorrow.

All during the day and into the evening, Kacie kept taking her hand to the back of her ear. Finally, I realized that she might be trying to tell us that that area is hurting. This is the same area that she had the mastoiditis. We called in the resident on call to have her examine Kacie. The resident noticed that the tube in her right ear might not be in there anymore. She will notify the BMT doctors so they can determine if they need to have the ear/nose/throat (ENT) doctor examine her. They may decide to do another CT scan of the mastoid if the ENT doctor determines that she has an inner ear infection.

During the day, Kacie’s nurse was suctioning the ventilator tube that goes down into Kacie’s bronchial tubes. She noticed that it didn’t sound right so she asked that I push the nurse call button to have someone come in to help. When these children are in ICU status, anytime you push the nurse call button they tend to think something major is wrong because there is already a nurse in the room. Well, the nurse at the desk answered and said she would send someone in to help. At the same time another nurse had come into our room and asked if everything was alright, and Kacie’s nurse told her that she just needed her to let an ICU nurse know that she needs help suctioning Kacie’s ventilator tube. The next thing you know, everyone is running into Kacie’s room because they thought there was an emergency. The charge nurse noticed that Kacie’s OG (oral/gastric) tube had almost completely come out of her mouth. This is a tube that goes down into her stomach so they can give her oral medications and suction her stomach while it is healing. Once they pushed the OG tube back down into her stomach, everything was fine. It sure gave everyone on the floor a scare. We had several other families concerned and asking if everything was alright with Kacie.

The preliminary results of Kacie’s skin biopsy showed that it is probably just a heat rash due to the fevers. The rash was a little more pronounced last night once her fever was higher. They will culture the biopsy for several days to determine if there is evidence of a viral infection.

Kacie’s weight didn’t go up much today. They took off 1-½ lbs. of fluid during dialysis. The renal doctors believe they are now getting her back down to her dry weight. Her blood pressures seem to be dropping right after dialysis, which usually mean that they’ve taken off enough fluid to reach the dry weight.

As a reminder, please go to our link How To Help to discover how you can help by giving the gift of life. A local chapter in Virginia of the American Red Cross will be holding a blood drive in Kacie’s honor. This drive will be held on April 9, 2002. This is a great opportunity to provide a gift that will last a lifetime.

All of the children here need special healing. Please continue to pray for Caleb to improve so that he can be switched off the oscillator to the ventilator. Pray for Kacie’s white blood count to multiply into the thousands. Pray that her fevers and any infections within her body disappear. Pray that all her organs heal, pray for her mental and neurological status, and pray for her overall healing.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 4, 2002 - Day +175 - Another Adventure...

Kacie is still on the ventilator. We had hoped that they would extubate her today. During the evening last night, Kacie kept pointing to the area behind her right ear, which is where she had mastoiditis. The doctors decided that they wanted to keep her on the ventilator at least until she had a CT scan of the mastoid. She finally had the CT scan around 8:30 p.m.

When going to the CT scan, Kacie started gagging and throwing up. We had to rush into the room so that they could hook her up to the suction. Unfortunately, the suction wasn’t working properly and it took some time to fix it. We had to clean Kacie before doing the CT scan. It seems that every trip turns out to be an adventure. By the time we get back into the room, we are exhausted.

The results on Kacie’s white blood count (WBC) remained at 600 and her absolute neutriphil count (ANC) increased to 300.

Kacie had high blood pressures throughout the night. They gave her a blood pressure medicine, a couple doses of a long acting sedative, and several doses of a short acting sedative. Then at 6:00 a.m., the resident on call gave her a continuous drip of a short acting sedative. They were trying to control her blood pressure, but instead it just sedated her more. She slept most of the day.

When the doctors came in, they turned off the continuous drip of sedation. They don’t want Kacie getting any sedatives, even the short acting ones, unless she is very agitated. They are trying to wean her off all sedation so that they can monitor her neurological status. They have written orders for blood pressure medication if needed. They have to be cautious since Kacie’s blood pressure will go high then low and vice versa. It is usually more dangerous to have a low blood pressure.

The dialysis nurse was able to pull off over 3 lbs. today. Kacie had gained more weight during the night because she had to have platelets twice and red blood cells once. Blood products add extra fluid to her, thus making her weight go up. Kacie’s high blood pressure was probably attributed to the extra fluid in her body.

Kacie had a CT scan of her chest, abdomen, and pelvis area yesterday. The doctors were concerned with the spleen. The results of the scan showed that the spleen could possibly be infected, may have inadequate blood flow, or it could be a sign of post transplant lymphoma disease (PTLD).

We had another scare today. All of a sudden Kacie’s saturations (measures oxygen) had dropped from 100% down to the low 80%s. This had her nurse very worried since Kacie is always 98% or better, even right after they have suctioned her. They contacted the resident on call and then she called the ICU doctor in to examine Kacie. They immediately turned up her oxygen level on the ventilator from 30% to 100% and ordered a blood gas to determine if she is getting the proper amount of oxygen. Then they ordered a chest x-ray and another blood gas and a hemoglobin test. While we were waiting for the results to come back, the ICU doctor examined Kacie and made a few changes on the ventilator to see if the saturations would change. All the results came back normal and the x-ray looked good. Even though the oxygen probe on her toe had been changed, the ICU doctor had them change it again. Plus we noticed Kacie’s feet were cold, so we put heat packs on her feet to warm them up. Her saturations started climbing back up to 100%! What a scare, but we were excited to know that it was just a problem with the probe not picking up her oxygen level properly.

Please continue to pray for Kacie, Caleb, and all the other children on this unit. Pray that Kacie can be taken off the ventilator soon and with no complications. Pray that her white blood count and absolute neutriphil count multiply. Pray that she continues to improve each and every day. Pray for Kacie’s full recovery.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 5, 2002 - Day +176 - Late Night...Late Update...

For those of you who check Kacie’s journal entry first thing in the morning, we apologize for not having the web page updated last night. I was exhausted so I decided to go to bed early (10:00 p.m.). I just remembered that I hadn’t updated yesterday’s journal entry, so it is 7:00 p.m. cst on Saturday night that I’m writing this entry.

One of Kacie’s lines from the hickman catheter in her chest wasn’t working properly, so it delayed dialysis getting started. They had to put TPA in the line to clear it and have it working again. The ICU doctor came in prior to her getting on dialysis and said that he was going to extubate her. Then he decided to wait until after dialysis. Several emergencies within the hospital prevented them from being able to extubate her. The ICU doctor came in around 8:00 p.m. and she that he didn’t feel comfortable extubating Kacie under the circumstances of all the other emergencies within the hospital. He wanted to make sure that someone would be available for several hours after her extubation in order to give her the proper attention that she would need.

Thanks for being patient with us for not writing our update until real late. Please keep praying for Kacie’s progress!

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 6, 2002 - Day +177 - The Ventilator Tube Is OUT!!!...

Kacie was scheduled for dialysis first thing this morning. Grandma Normie (Norma Faulkner) stayed with Kacie while Uncle Scott (Scott George), Donald, Erin, and I all went shopping. Erin had been planning to take me on a “make-over” shopping spree. She really thinks I need a “make-over”.

We had a really good time together. Erin is a great shopper. She picked out a few outfits for me to give me a “new look”. I have to admit, the outfits are very comfortable and they do look good. Thanks, Erin! She also wanted to take me to get my hair, nails, and makeup done. We didn’t have that kind of time, so I told her we would make an appointment for that part of the “make-over” at a later date.

Exciting NEWS!!! Kacie was extubated at 3:30 p.m. cst today. She is doing great! Her saturations are staying up around 98% to 100%. She is coughing really well. She has been keeping her mouth open, probably because she’s had a tube in for six weeks, and her mouth has been very dry. We keep swabbing it with water to help keep it moist. We are very anxious to hear her sweet little voice again.

Kacie’s white blood count and absolute neutriphil count have remained the same at 600 and 300 respectfully. Her creatine level is better at .9, which mean that her kidneys are showing signs of improvement. They were able to pull off about 2-1/2 lbs. during dialysis.

More exciting NEWS!!! The Epstein-Barr virus results came back and it showed less than 100. The test prior to this one showed 4500. Hopefully, this test result is accurate and means that the medication has destroyed the virus.

We’re calling it an early night. Remember to turn your clocks forward for daylight savings time.

Please pray that Kacie does extremely well through the night. Pray that she continues to improve and doesn’t have to ever go back on the ventilator. Pray for her overall medical situations and total healing. Remember to also pray for Caleb and all the other children on this unit.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 7, 2002 - Day +178 - Blood Culture Results...

It felt wonderful waking up knowing that Kacie is off the ventilator. It is another step closer to her full recovery. We are very excited that she is getting better. She has been able to cough pretty well. She is still taking shallow breaths; however, as we are sitting her up in bed more she is getting a little stronger. We can hardly wait to hear her talking again.

Late last night one of Kacie’s blood test showed gram-positive cocci within her blood. They cultured the blood to determine the type of species, which showed as coagulase negative staphylococcus. This particular species is a common skin bacteria. They started her on the antibiotic that is sensitive to these particular bacteria; however, they have also said that the blood test could have been a contaminated sample and she may not really have the bacteria in the blood.

Kacie’s white blood count (WBC) is 500 and her absolute neutriphil count (ANC) is 400. It is good to see her ANC increase. During dialysis they were able to take off 1.5 lbs. of fluid.

Grandma Normie (Norma Faulkner), Uncle Scott (Scott George), and Erin left to go back home today. They lost a couple hours sleep due to the daylight savings time and also the change between central standard time and eastern standard time. We wish that Kacie had been off the ventilator and had felt better during their visit.

They took the ventilator out of Kacie’s room today, which freed up some space. It is exciting to have them removing equipment from the room, that means Kacie is getting a little better. We are now able to fit a futon into the room so that I’ll have a better place to sleep.

Please continue to pray that Kacie strengthens every day. Pray that her blood counts increase. Pray that all infections disappear. Pray that Kacie improves with each breath. Please continue to keep all the other children in prayer and pray that Caleb will be switched from the oscillator to the ventilator soon.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 8, 2002 - Day +179 - God's Blessings...

What a blessed day! We’ve been waiting for the day when Kacie’s tubes could come out so that I can climb up in bed with her. I was able to lie in bed holding Kacie and comforting her. She is so sweet and tender. She seemed to really enjoy having me lay with her. It’s hard to lie in her bed since she is on an airbed. We told her that it is like being on a trampoline. We use to jump on the trampoline at home and play “pop-corn”. “Pop-corn” is where someone sits in the center of the trampoline and another person jumps around trying to make the one sitting pop up and down. Erin and Kacie loved playing “pop-corn” since Kacie was so light-weight she would pop all over the trampoline.

Exciting news!!! White blood count (WBC) doubled at 1000!!! Absolute neutriphil count (ANC) jumped up to 700!!! We are so excited!!! Praise God for answering our prayers!!! We’ve been praying for her counts to rise and we are so blessed to see this day. Please continue to help us pray for these numbers to multiply by the thousands.

They were able to take off 1.5 lbs. of fluid again today during dialysis. The renal doctors believe her kidneys are improving and showing signs of working since some of her drug levels are low. These particular drugs can only be excreted through the kidneys.

The doctors decided to take her arterial line out of Kacie’s arm, since this could be a source for infections. This line was used to constantly monitor Kacie’s blood pressure. It has been in for six weeks and normally arterial lines don’t last that long. Since it has continuous blood pressure readings, it has been extremely useful for dialysis. Now they will monitor her blood pressure by using a blood pressure cuff and checking every 30 minutes.

Blood was drawn to send to the lab in Virginia for another test result on the Epstein-Barr virus. The last test showed less than 100 strains of the virus. Please pray that these results show the virus is gone. Kacie’s temperature rose to 100.6? F tonight. She is on several different antibiotics for the most common bacterial, viral, and yeast infections.

Nutrition is so important in getting better. Kacie has been on a continuous drip of total parenteral nutrition (TPN). It is best to get off the TPN as soon as possible since it is harmful to several bodily organs. Today the doctors decided to try feeding Kacie a pediatric (young child) formula. It will be administered continuously, but in small portions. It is administered with a kangaroo pump and is connected directly into her nasal gastric (NG) tube. Please pray that Kacie’s stomach handles the formula so that she can be weaned off the TPN and all her organs heal.

Dr. Charnas, Kacie’s neurologist, came by to visit and examine Kacie this evening. He was very excited that she is doing well off the ventilator and her blood counts are coming in. Kacie was happy to see him as well, even reaching for his hands. Once we get back to Virginia, he plans to come visit and join us for a crab feast.

One of Kacie’s respiratory therapists, named Erin, came by to visit Kacie since she was taken off the ventilator. As she was leaving she told Kacie bye and Kacie actually tried to talk and uttered “bye”! Another exciting moment!!!

If you haven’t been following Kacie’s journey each and every day, you may wonder how we can get so excited at little things like watching her utter “bye”. Every little moment that is a step forward is exciting to us. Remembering the excitement that we had with her very first words, this excitement is even greater. Our extreme amounts of emotions with each of these moments are so indescribable. We are thankful to God for each of these moments filled with emotions pouring out of our hearts.

Please pray for Caleb tonight since the doctors are talking about changing from the oscillator to the ventilator tomorrow. Pray that his lungs strengthen and this is the right decision in moving him towards total healing. Pray for Carley, who is also ICU, since she had to start dialysis yesterday. Pray for Riley as he just had his bone marrow transplant and is now waiting for his blood counts to come in. Pray that Sam’s blood counts multiply into the thousands, as he recently had to have a boost of cells. Please continue to pray for all the children on this unit and any other child that is struggling with critical issues.

As you pray tonight, please thank God for the many blessings that he has allowed us to experience. Pray that Kacie continues to improve and soon will have a complete recovery.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 9, 2002 - Day +180 - Kacie Smiles...

Kacie kept her nurse awake all night last night. She decided that she would stay awake throughout the night and then sleep during the day. She has confused her nights and days. She is probably tired of being in bed for six months.

Her white blood count (WBC) decreased to 700 and the absolute neutriphil count (ANC) is 500. The doctors said that her counts would fluctuate some. Please continue to pray for her counts to increase into the thousands.

They only ran her for 3 hours instead of 4 hours for dialysis. They pulled off 1.5 lbs. of fluid during her dialysis run.

The doctors have turned off all of her sedatives. Maybe now Kacie will continue to wake up and be more interactive. She had withdrawals from the sedations and every time someone would give her more, we weren’t sure if it was causing more problems with withdrawal symptoms. They are also discussing whether they need to start her on a regular blood pressure medicine to help keep her pressures stable.

Kacie is being fed a pediatric formula through her nasal gastric (NG) tube. She has only gotten sick twice since they started it last night. She has also had blood in her stool today, so the nurse sent a sample to the lab for testing.

I climbed back up in bed with Kacie so that we could watch the Peter Pan movie. Right after the previews were over, Kacie and I were fast asleep. The nurse said that Donald fell asleep right after we did. We had a very good nap and I really enjoyed lying with Kacie.

I held Kacie on my lap while sitting in a chair so that the nurse could change Kacie’s bed after she had gotten sick. Kacie fell asleep in my arms. She looked so comfortable and excited to be out of bed. We are going to try and sit her on the edge of the bed tomorrow. She should really enjoy getting up.

We saw Kacie’s beautiful smile tonight. We were talking about funny things and Kacie just started smiling. Her nurse, Angela, noticed Kacie smiling so of course we all wanted to see. We love to see her smile, especially after everything that she has been through.

Pray that each day is brighter and Kacie only shows improvement. Pray that her counts climb high and pray that all infections stay out of her body. Pray for her full recovery. Please pray for all the bone marrow transplant children. Caleb was switched to the ventilator today. C.J. had outpatient surgery this morning and due to sedatives, he was admitted back onto the unit for them to monitor him. Pray that he recovers from the surgery and is released from the hospital.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 10, 2002 - Day +181 - Kacie's Personality Shines Through...

Kacie has been breathing well since being taken off the ventilator. Her saturations have been 99% to 100% throughout the day and night. Kacie is able to cough up secretions, which will help her keep the lungs clear. Kacie’s white blood count (WBC) is 600 and her absolute neutriphil count (ANC) is 300.

We saw a big improvement with Kacie’s weight today. She had only gained ¼ lb. We didn’t believe the weight, so we weighed her again to be positive. They still did dialysis, but didn’t have to pull off any weight. Hopefully, she won’t have to stay on dialysis much longer.

Kacie had physical therapy and occupational therapy. When they tried to stretch her legs, she started moaning. We were asking if they were hurting her and she moaned “yes”. We were excited that she decided to try and talk.

Caleb was put back on the oscillator today and is requiring a lot of support in order to keep his saturations up. We ordered dinner and were planning on eating in the lounge with his mom and dad (Amy & Steve). When I got ready to leave, Kacie hollered “no”. She didn’t want me to leave her. I comforted her and explained that I’d be right back and the nurse would stay in the room with her. She finally dosed off to sleep, so I was able to go have dinner. We believe that she is starting to get some of her personality back.

Donald made chocolate chip cookies and double fudge brownies and brought them up for everyone. What a special treat! I only wish that Kacie could have joined us. The only thing we could do for her is to swab her mouth with a wet toothette. Her mouth is very dry and she continuously points at it so that we will swab it with water.

Kacie is still being fed pediatric formula. She had nausea a few times, but overall it seems like she is tolerating the formula. She had a few bloody stools, so they sent a culture. This may be due to the GI tract not being used for so long. Kacie is scheduled for a follow-up CT scan of her chest, abdomen and pelvis areas in the morning. They plan to use an IV contrast solution and a contrast in her NG tube. They want to determine the thickness of her intestinal walls. Depending on the results of the CT scan, they may have the gastrointerologist perform another upper and lower GI scope.

Kacie will be scheduled sometime next week for another bone marrow biopsy. She was due for her six month biopsy tomorrow, but the BMT doctor wants to wait a few days so that she gets her strength, plus to give the donor boost a chance to come in.

The blood drive that was held in Kacie’s honor collected 55 units of blood. This is the most that our church, Seaford Baptist Church, has ever collected. We were trilled to hear these results!!! Kacie is receiving platelets and red blood cells as we’re writing this journal entry and it is a blessing to know that there are lots of people who continuously give blood that helps to save her life and many others. Thank you to Shirley Crocket and all the other volunteers for organizing this successful blood drive.

Bonnie Dixon, a close friend of our family, is hosting a Pampered Chef fundraiser for Kacie. Please check out the link How To Help to find out how you can help.

Our family wants to thank everyone for your continued support. We greatly appreciate all the fundraisers and benefits that have been held on Kacie’s behalf. We really appreciate all the many thoughts and prayers. Thank you for helping to keep our spirits high even in the darkest of moments. We are looking forward to the day when Kacie can walk out of this hospital.

Please continue to pray that Kacie improves each and every moment. Pray that her blood counts start coming in by the thousands. Pray that she is well on her way to a full recovery and that she doesn’t have to endure any more rocky roads along the way. Please pray for Caleb throughout tonight. His little body needs a special healing that only God can provide. Pray that we wake up knowing that miracles are happening to help his overall medical challenges. Continue to pray for all the doctors and nurses on this unit. Pray for all the other children as they are recovering from serious medical situations. Pray especially for Kacie’s donor and all the other donors in the world. Thank you to everyone at W&M and VIMS who decided to participate in the bone marrow drive today! We are so blessed to have people who care so much!

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 11, 2002 - Day +182 - Emotional Trials...

Our hearts are torn in so many directions. We are appreciative of each day and thank God for allowing us another day as a family. It is difficult to explain the emotions that we’ve experienced over the last six months and it is even more difficult the longer that we’re here. We are blessed with times when we should have joy, but our hearts are still trying to mend from all the sorrow that we feel for Kacie and all the other children that are suffering with extremely difficult medical issues.

Caleb is struggling for his life here on earth. Amy, his mother, came to let us know that the doctors feel there is nothing else medically they can do for him. Please pray that God will provide Amy, Steve, and the rest of their family strength and faith during these rough times. God is the only one who knows his plan for Caleb. Please pray for their comfort in God’s plan.

Kacie’s white blood count (WBC) and absolute neutriphil count (ANC) remained about the same as yesterday at 600 and 400. We had to get up early this morning because she was scheduled for a CT scan at 7:30 a.m. They had to give her contrast, which she got sick on, in order to view the thickness of the intestinal tract. Basically, they couldn’t determine whether the intestinal tract was thickened or not. The CT scan of her chest showed that the lungs looked better than before. The results of the scan of her abdomen and pelvis showed that the kidney and liver looked good. They were especially pleased that the scan of the spleen showed much improvement. The last scan of the spleen indicated that she may have post transplant lymphoma disease, so they were glad to see this scan showing improvements to the spleen.

They were able to take off about 3 lbs. of fluid today during dialysis. Kacie had platelets, red cells, plus the contrast solution since her dialysis run yesterday which is why she probably gained the weight back.

The physical therapist and occupational therapist stretched Kacie’s legs and arms. Then we sat her up in the red “princess” chair. This is a soft foam cushioned chair that we can use in her bed. She looked so good sitting up. We believe she loved it because she had such a pretty smile on her face.

The doctors stopped Kacie’s feedings of pediatric formula since she has been nauseas and still has bloody stools. They have scheduled the gastrointerologist to examine Kacie on Monday. The gastrointerologist may perform an upper and lower GI scope.

Kacie has been moaning a lot today. She seems to be in pain, but she isn’t talking a lot yet. We have been working with her saying one-syllable words, such as “mom”, “dad”, “dog”, etc. After getting her to say some of these words, she surprised us when she was talking to Erin on the phone. She said, “Hi, Erin” and “I love you”. We were thrilled! She started saying more things through out the night, trying to speak in short sentences. This is so exciting!

Please keep Kacie in your prayers. Pray for her mental, emotional, spiritual, and physical health. Pray for Kacie’s total healing. Please remember to keep Caleb and his family in prayer tonight. Pray for all the other children on this unit. Pray that each of the family members lean on God for their strength. Continue to pray for Kacie’s donor. We are so blessed to have this special person in our lives.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 12, 2002 - Day +183 - Kacie Is Communicating...

Please pray for our dear friends, Amy and Steve Glover and their family, as Caleb went to be with the Lord around 2:25 this morning. Caleb was very peaceful as he lay in the arms of his mom and dad. After talking with Amy and Steve, we know that their days will be filled with the wonderful memories of Caleb. In his short five years of life, Caleb touched the lives of so many people. Please keep the Glover family in prayer that the Lord will provide them comfort.

We are constantly praying for all the children that have critical illnesses. This journey is so indescribable and unbelievable. Our hearts are trying to mend as we keep facing more and more trials.

Not much change in Kacie’s white blood count (WBC) and absolute neutriphil count (ANC) which are 600 and 300. The doctors are still hopeful that her counts will start increasing. Kacie needs her blood counts to rise so that she will strengthen and get better. She is scheduled for a bone marrow biopsy on Monday. The doctors have also scheduled for an upper and lower GI scope for Monday since she will already be sedated from the biopsy.

Kacie didn’t gain much weight since dialysis yesterday, so they only took off a little over 1 lb. of fluid. She received red blood cells during dialysis since she was almost below her red count parameter.

Kacie sleeps on and off throughout the night and day. She was awake around 3:00 a.m. and started moaning. She seems confused and frustrated that she can’t communicate very well. Dr. Charnas examined her this morning and believes that she is still reacting to all the sedatives that she had been taking. He explained that it could take as long as 6 to 8 weeks to get all the sedatives out of her system.

Kacie doesn’t like anyone touching her. She moves the doctors’ hands when they are trying to listen to her lungs and heart. She was very uncomfortable when the physical therapist and occupational therapist tried to stretch her arms and legs. She even told them to “get off of me”. They did an ultrasound of Kacie’s bladder to determine if there are any blood clots. They didn’t notice any clots. Kacie certainly didn’t like them pressing on her bladder.

Kacie got to sit up in her red “princess” chair again today. This is good therapy for her. It helps her to see that she can sit up and it is also good for her lungs. She fell asleep while sitting up. She looked so comfortable.

The doctors decided to start Kacie on a different pediatric formula. This formula is supposed to be easier on the kidneys. She had a few more bloody stools this morning, but then it appeared that the blood stopped. Hopefully, she will tolerate this formula and not have any more blood stools.

Donald fixed us a home-cooked meal tonight. It was delicious! After eating hospital and take-out food all the time, this was a nice treat.

Please continue to pray for Kacie. Pray for lots of improvements in her health. Pray that her blood counts multiply in large amounts. Pray for her strength and determination. Pray that the doctors and researchers are closer to answers with gene therapy. Gene therapy will hopefully help with immunosuppressed illnesses during transplant and someday will hopefully replace the need for bone marrow transplants.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 13, 2002 - Day +184 - Too Tired To Write...

We apologize for not writing the update last night, but we were exhausted and decided to just relax for the evening and watch a movie. Kacie doesn’t sleep much at a time, so we are constantly trying to amuse her and get her to talk more. She is making small improvements every day.

During dialysis they were only able to pull off less than a pound of fluid since her blood pressure was dropping a little. Her blood pressure had been higher during the day before they started dialysis and she had received medication to bring it down. It is better to start a dialysis run with higher pressures.

Kacie’s white blood count (WBC) is 500 and her absolute neutriphil count (ANC) is 300. These numbers aren’t as high as we’d like; however, the doctors explained that the counts would go up and down some. We are praying that she will show signs of engraftment soon.

Kacie had physical therapy and we sat her up in the red “princess” chair again. She sat up for 45 minutes. This is good therapy for her and it allows her to have a better view out her window. Once she gets tired, she lets us know and we have to lay her back down in bed.

Donald fixed a nice dinner for us tonight. We certainly miss eating dinner with our friends, Andy & Carolyn (Brady’s parents) and Steve & Amy (Caleb’s parents). We ate in Kacie’s room. It will be wonderful once Kacie can eat with us again.

Caleb’s family headed to Colorado. We were all hoping that we’d have enough time to spend together for a nice lunch; however, they had to hurry for their plane ride. We were able to see them for a little bit prior to them leaving. They are such an inspiration to us and we developed a great friendship. Hopefully, they will be able to come visit us in Virginia next year. Pray for their comfort every day.

Please continue to pray for Kacie’s full recovery. Pray that her blood counts start coming in by heaps and bounds. Pray for improvements every day.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 14, 2002 - Day +185 - Pray For Good Biopsy & Test Results...

Kacie’s white blood count (WBC) dropped to 300 and we’re not sure what the absolute neutriphil count (ANC) is since the lab didn’t record it. They were able to take off 3 lbs. of fluid during dialysis.

Kacie appeared a lot more alert today. She is only sleeping a little at a time and stays awake most of the day. They are giving her some medication at night to help her relax so that she gets some sleep.

She is able to tell the doctors to leave her alone. She also tells them to stop. She is probably tired of being in the hospital this long and she doesn’t want anyone touching her anymore.

The doctors have increased her pediatric formula since she has been able to tolerate it more. They’ve ordered a swallow test to be done by the speech specialist. This test will enable them to determine if she can start to eat foods again. We’d like to try and give her popsicles, but they want to be sure that she won’t aspirate.

Kacie is scheduled for a bone marrow biopsy and an upper and lower GI tract study tomorrow. Please pray that Kacie’s biopsy shows that her bone marrow is healthy and plentiful in cellularity. Pray that the upper and lower GI study also shows excellent results. Pray for her continued progress each and every day.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 15, 2002 - Day +186 - Emotionally Draining...

Kacie didn’t sleep well last night. They gave her medication to help her sleep; however, just about the time she would start to fall asleep, the nurse would have to take a blood pressure or do something else that would arouse Kacie. She finally had dosed off around 6:00 a.m., but we had to wake her at 7:30 a.m. to get her weight since the dialysis nurse was planning on coming up then.

Kacie’s platelets had dropped all the way down to 21,000 this morning. Her platelet parameter is set to 100,000. It was even more important to make sure that her platelets were above 100,000 in order to do the procedures that she was scheduled to have done today. The procedures were suppose to happen at 1:00 p.m. They were only able to run dialysis on Kacie for 2 hours since they needed to get platelets and fresh frozen plasma in before the procedures. They were able to take off 2 lbs. of fluid during her dialysis run.

The procedures were pushed back to 2:00 p.m. since the platelets were late coming up. They did manage to get her platelets above 100,000. The gastrointerologist wanted to also give a medication that would help boost the platelets. They decided to do the bone marrow biopsy first. This procedure went well and we are expecting some results back on Wednesday and the rest of the results will take up to 10 days to get back. After the biopsy, they did a sigmoidoscopy (or lower GI tract scope). Her lower intestinal tract looked worse than the previous exam. The intestinal tract was inflamed throughout and there were signs of bleeding; however, it appeared that it had started clotting off. The doctor took 4 or 5 biopsies of areas within the intestinal tract. Once she brought the scope out, Kacie started bleeding. It was bleeding bad enough for the doctor to decide that she had better go back inside with the scope to make sure that all the bleeding was just from the biopsy sites. The doctor felt that the bleeding was all due to the biopsies. The doctors hopes were that she would clot on her own; otherwise, they would have to cauterize (or burn) those areas within the intestines to stop them from bleeding. Cauterizing would be extremely risky with the given condition of her intestines. The doctor explained that if they have to cauterize it could damage the intestinal wall to where she would have to have emergency surgery to tie off the areas of the intestines. Thankfully, Kacie started having several blood clots come out so the doctors believe she will continue to clot off and then hopefully stop bleeding. The biopsies will be tested for viral infections and graft vs. host disease (GVHD). The doctors are concerned that she might have GVHD.

The ICU doctors decided that they shouldn’t do the endoscopy (or upper GI tract scope) since she just recently came off the ventilator. They felt that the risk was too great to put her on the ventilator for this procedure. It could cause her to end up being on the ventilator for several days.

In addition to the above procedures, they changed her nasal gastric (NG) tube to a smaller feeding tube. The doctors also were able to examine in her mouth, which they felt looked pretty good. They also examined her tummy, since she wouldn’t let them touch it before. The doctors examined her hickman line area on her chest because there was a crust at the entry site. They felt it was healing nicely.

Today was emotionally draining. Our prayers are that we will see more miracles in Kacie’s life. Please pray, pray, and pray some more for her overall health. Pray that the bone marrow biopsy shows excellent results. Mainly that her cellularity has increased greatly and that she is still 100% donor cells. Pray especially that she doesn’t have GVHD. Pray that her blood counts mutiply, she really needs high counts. Please continue to pray for her full recovery. Pray also for all the other children that are recovering from serious diseases.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 16, 2002 - Day +187 - More Medical Challenges...

This was another draining day. Kacie continued to bleed from the lower GI tract. She had several large blood clots. Around noon the bleeding slowed down, so hopefully she won’t continue to bleed.

Dr. Wagner is now on service. He specializes in Fanconi Anemia. Dr. Wagner was on service back when he diagnosed Kacie with bacterial spinal meningitis. He has been keeping up with Kacie’s progress on a weekly basis by communicating with the other BMT doctors. Plus he has been consulted on several occasions when Kacie was struggling with different medical situations.

The bone marrow biopsy results show that Kacie’s marrow is less than 5% cellularity. According to Dr. Wagner, he is not as concerned with the cellularity he is more interested in the total blood counts. Some people only have 5% cellularity, yet their blood counts will be high, while other people might have a high cellularity and low blood counts. He also commented that he didn’t see any of the irregular cells in her marrow like the last time. They believe the irregular cells were due to the Epstein-Barr virus. He did see that the marrow is making white and red blood cells. He didn’t see any signs of platelets being made, but they usually are the last to come in. The donor status results won’t be in for about ten days.

Results of the lower GI tract biopsies showed that Kacie has level 2 of graft vs. host disease (GVHD). Dr. Wagner plans to start her on a moderate amount of steroids tonight. There are three different approaches to helping to resolve the GVHD. All three have their own set of risks, and Dr. Wagner will be reviewing all of Kacie’s previous conditions and responses to different medications tonight. He will have a decision on which approach he will use to treat her GVHD by tomorrow. Any of these approaches can cause her to be at a greater risk for other infections. Please pray for wisdom for the doctors and nurses as they determine the best method for treating the GVHD. Pray that Kacie will respond well to the treatment and that she doesn’t develop any other infections.

They were able to pull off almost 2 lbs. of fluid during dialysis. They were planning on running her for only 3 hrs. but decided they needed to run her for 4 hrs. since her chemistry numbers that affect the kidneys were high.

Pray for our energy and faith as we move forward through these additional challenges. Pray that Kacie’s bone marrow will recover and increase into the thousands. Pray that the GVHD is cured through the best approach and that she doesn’t develop any other infections. Pray that Kacie’s bleeding stops. Pray that Kacie’s spirits remain high and that she continues to demonstrate the drive and determination to get better day after day. Pray for all the other children on this unit as well. Especially pray for Carley’s lungs to strengthen, Sam’s blood counts to come in, Riley’s blood counts to rise, and Connor’s overall medical conditions to improve.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 17, 2002 - Day +188 - Smiles & Giggles...

What a joy to see Kacie smile! What a pleasure to hear Kacie’s little giggle! Every moment brings joy to our hearts. Kacie is a miracle child and she is God’s work in progress. We are blessed to be able to witness the many miracles within her life.

Kacie didn’t sleep very well last night; she only slept for one hour. She stayed awake most of today as well. She really could use a good night’s sleep so we are hoping she sleeps well tonight.

Kacie was more alert today. She was communicating better. She asked if we could lift her leg, she asked for some bread, and she told us she needed to go to the bathroom. These are all good signs since this is the most she has been saying. We are so encouraged each day to watch the progress that she is making. Every step is a step closer to her overall recovery.

Dr. Wagner decided to use two of the approaches for treating Kacie’s graft vs. host disease (GVHD). He started her on heavy doses of steroids; however, he will taper them down every four days. Usually, they will keep children with GVHD on heavy steroids longer, but he is concerned with some of the side effects so he is treating her differently. He also decided to use a fairly new medication as well. He said that he might have used it on five patients within the past year, all with success. He feels this is a good approach since the only side effects are fevers and chilling. Every decision on Kacie’s care has to be thought out very carefully due to her immune system being low and all the many challenges she keeps facing.

We received the results back from the Epstein-Barr virus test that was done last week. The results showed no sign of the virus!!! Dr. Wagner was excited to hear that news since her immune system will be low while treating the GVHD. He did say that it could come back, but it is better to start with a negative result than if she still had the active virus. Her jaundice even looks better today. According to the doctors, her billirubin level has been improving.

Kacie still is having some bleeding from the lower GI tract, but is getting better. She had to receive platelets, red blood cells, fresh frozen plasma, and vitamin K today. Kacie had dialysis late today. The dialysis machine broke prior to them starting her run, so they had to locate another one to use. They were able to pull off 1-½ lbs. of fluid.

Thank you for keeping Kacie in your prayers. Please continue to pray for her to show great signs of improvements. Pray that her blood counts climb higher and higher. Pray that the GVHD responds well to the treatment plan that the doctors have determined is the best method for Kacie. Pray that she doesn’t develop any more infections. Pray for her full recovery. Please continue your prayers for all the other children as well. Thanks again for all of your support on this very difficult journey!

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 18, 2002 - Day +189 - Sleepless In Minnesota...

Kacie had another sleepless night. She may have gotten a total of one-hour sleep throughout the night. Ever since Kacie has been off ICU status, she has had a sitter watch her throughout the night. This is so that I can feel comfortable getting some sleep, while knowing that someone is watching her. Kacie has been pulling and biting on the IV tubes and her feeding tube.

The dialysis nurse was able to pull off 1-½ lbs. of fluid during dialysis. Kacie had to receive red blood cells and fresh frozen plasma (FFP) during dialysis. Later in the day, she received platelets twice and she was given medication that is an antibody for the red blood cells. She was also given two doses of Factor 7, which is a blood-clotting factor that is normally produced by the liver. The doctors felt that she might need the clotting factor to help with the bleeding that she has within the lower intestine.

Kacie had a breathing treatment that is given once a month to help with preventing pneumonia. She got sick while doing the treatment, so the respiratory specialist had her breath the treatment for only a couple minutes at a time, and then he would let her take a break. She finally was able to finish the treatment.

Please continue to pray for Kacie’s full recovery. Pray that her blood counts rise, pray that the GVHD disappears, pray that all infections stay clear of her body, and pray for her to get stronger and improve daily. Please keep Carley Richard’s family in prayer tonight. Carley went to be with the Lord last night. Please continue your prayers for all the other children and their families on this unit.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 19, 2002 - Day +190 - Stop The Clots...

Kacie had another night with very little sleep. Again, she may have gotten a total of one-hour sleep throughout the night. It appears that every time Kacie doses off to sleep, either the sitter or the nurse needs to get a temperature or take her blood pressure. This arouses Kacie and then she can’t get back to sleep. Dr. Wagner feels we should rearrange taking vitals so that Kacie can get a few hours of sleep in a row.

Last night Kacie had a large blood clot from her lower GI tract. Once she passed the clot, she started bleeding quite a bit. The resident called the fellow and they decided to give Kacie extra red blood cells and back-to-back units of platelets to help keep her blood counts at a safe level. She bled several times throughout the night, but then slowed down during today. Hopefully, she will stop bleeding and the GI tract will heal soon.

They were able to pull off almost 2-½ lbs. of fluid during dialysis. She received red blood cells and fresh frozen plasma (FFP) again during dialysis today.

Tonight we noticed Kacie’s skin is red. We believe it is skin graft vs. host disease (GVHD). The nurse is waiting for the resident to come look and determine whether we should start the steroid creams on her skin again.

Kacie seemed to be more alert today. She has been smiling and laughing more. We signed up for a volunteer to sit with her for an hour. She really enjoyed the time with the volunteer. We told her it was a friend that was coming to watch a movie and she was excited. The volunteer, Michelle, has sat with Kacie before when she was doing much better. Kacie may have remembered her. They watched “Parent Trap” for the hundredth time and then read one of her “Junie B. Jones” books.

Kacie still needs special healing. Please pray for her blood counts to skyrocket! She really needs these counts to multiply in order to help her body heal from the GVHD and any other infections. Pray that Kacie gets some much needed sleep tonight. Pray for her full recovery. Please pray for all the other children that are recovering from serious illnesses.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 20, 2002 - Day +191 - Finally, A Little Rest...

Kacie slept better last night. The doctors had asked that the nurses hold off on getting vital signs, such as blood pressures, temperatures, etc., until Kacie wakes up. Since they didn’t wake her up, she was able to rest more. She has a lot of sleep that she needs to catch up on. She also fell asleep several times today, which will do her good.

We had to suction Kacie’s mouth several times due to extra mucous and yeast building up. It causes her to gag and sometimes even get sick from the thick mucous in the back of her throat. We had the doctors examine Kacie’s skin today to determine if they felt it was a sign of skin graft vs. host disease (GVHD). Her skin looked better today than it did last night. The doctors felt they have enough coverage with the IV steroid medications so that we don’t need to put the steroid creams on her. They aren’t convinced that it is skin GVHD; but since she is already on the IV steroids she would be covered either way.

The dialysis nurse was able to pull off another 2-½ lbs. of fluid. It does appear that the kidneys are trying to start working. However, some of Kacie’s chemistry results still indicate that she needs dialysis on a daily basis. Hopefully, she won’t have to be on dialysis much longer.

Kacie’s white blood count is still only 200. She really needs those counts to climb. She developed a fever of 103?F tonight. It may be due to the GVHD, but the nurse went ahead and sent another blood culture anyway.

Please continue to pray for Kacie’s health. Pray for the white blood count to multiply. Pray for the GVHD to clear up. Pray that Kacie starts feeling better and communicates more. Pray for her overall recovery. Thanks once again for joining us on this very difficult journey. Thanks especially for the many prayers!

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 21, 2002 - Day +192 - One Year Ago Today...

One year ago today our lives were quickly changed. We woke up early to get a quick start on the day. We had planned an exciting “family day” where we would spend the entire day at Busch Gardens in Williamsburg. “Family days” are always fun for us. We try to spend a lot of quality time doing things that the girls will always remember and cherish. We had already scheduled to take Kacie for her 7-year well checkup that morning, so our plans were to go to the doctor’s appointment first. Then we were to have chocolate-chip pancakes at our favorite breakfast restaurant in Williamsburg before venturing on to Busch Gardens.

Little did we know that this day would change our lives forever and start us on a journey that at the time was so unimaginable. The girls were laughing and all excited about our “family day” plans. They were discussing all the many rides that they wanted to go on. This would be our first Busch Garden’s trip for the new season. We were planning to buy season’s passes so we could go there as much as we wanted. The girls wanted us to hurry the doctor’s appointment, so that we could start our day and have lots of fun.

Kacie told the nurse that we were getting ready to go to Busch Gardens. She probably made the nurse feel guilty that it was taking too much time because they quickly put us into an examining room. They checked vital signs (temperature, blood pressure, and heart rate) and asked various questions concerning her overall health. When the doctor came in we explained, as we had done so many times in the past, that her skin was yellowish. Only this time Kacie really looked yellow. We asked the doctor if they could check her billirubin because it looked like she was jaundice. Her doctor examined Kacie and decided that her billirubin was probably fine since the coloring in her eyes looked normal. According to her doctor, her eyes would be very yellow as well if she was jaundice. Since we were concerned, the doctor decided to get a complete blood count.

The nurse took a sample of blood from Kacie’s finger. Erin was very squeamish, but Kacie did great. They came back into the room and explained that they would need to get some more blood because their lab equipment may not have been working correctly when they tested her blood. So they took another sample from Kacie’s finger. Again, Kacie was a real trooper while Erin was saying “yuck”. This time the doctor came in and explained that Kacie’s blood results were low and the only way to really be sure that it is accurate is to get blood peripherally (from her arm). By this time the girls were frustrated because it was holding up our fun day. Kacie held out her arm while the nurse drew more blood. Donald and I glanced at each other with worried looks on our faces. We asked the doctor what she was thinking and she would only say that she wanted to wait until they tested the peripheral blood.

Once more the doctor came back into the room, only this time she looked extremely worried. We asked her for the results and she told us that her blood counts were even lower with the peripheral blood. We asked what she thought was wrong and she explained that she thought Kacie might have leukemia. Our hearts sank, our legs became weak, and we left the room so as not to let Kacie know that we were also crying.

The doctor cancelled the rest of her patients for the day and a nurse went in to sit with Kacie while we met with the doctor. The doctor explained that we needed to go see an oncologist/hematologist specialist at King’s Daughters. Donald got on the phone with the specialist, Dr. Owen, at King’s Daughters. He explained to Dr. Owen all of the things that we’ve been concerned with since Kacie was born. Some of our concerns are that she has a pelvic kidney, the “birthmark” spots on her abdominal side, the pale and yellowish skin, and her small stature.

Since it was Saturday, Dr. Owen suggested that we go ahead to Busch Gardens and plan to be at King’s Daughters early Monday morning. Based on the phone conversation, he said that he would be testing her for three things; Fanconi Anemia, Aplastic Anemia, and Leukemia. Due to our limited knowledge, we were thinking it would be better if she were diagnosed with one of the anemias.

We went to breakfast in Williamsburg and then ventured on to Busch Gardens. We were extremely careful with Kacie the entire day. Our hearts were broken, yet we didn’t want Kacie to know that we were crying inside. We tried to make the most of the day. It was very difficult to enjoy the day knowing that we were getting ready to face a major medical issue.

I stayed up really late that night researching the internet for the different diagnosis that Dr. Owen had mentioned. After researching Fanconi Anemia, I seemed to know that this was the diagnosis that the doctors would determine is what Kacie has. I cried and cried. Then Donald came in and wanted to know what was wrong. After explaining what I had read, he agreed that this appeared to be Kacie’s diagnosis. Then we both stayed up all night crying.

After several tests and waiting for different results, Dr. Owen explained that Kacie has Fanconi Anemia and Aplastic Anemia. Dr. Owen, the nurse, and staff at King’s Daughters were extremely supportive and helped us with coping with this news. Plus they provided us with excellent care while we waited to hear that a perfect match donor was found and Kacie would be scheduled for a bone marrow transplant in Minnesota. While we waited for the transplant to be scheduled, we took Kacie to New York to participate in a study of Fanconi Anemia patients.

Everything was happening so fast and we were scared to learn that this is an extremely rare genetic disorder. Now here we are in Minnesota seven months after Kacie’s bone marrow transplant. It is hard to believe that a year has already gone by since we learned of Kacie’s medical conditions.

As we reflect back on the past year, we are so grateful to God for providing the many miracles along the way. We are thankful to have so many thoughtful people praying and caring for Kacie during this difficult journey.

Kacie has been in pain most of the day. She didn’t sleep well last night and she moaned most of today. She has started bleeding from the lower GI tract again, so the doctors gave her more medications to help with the blood clotting. They were able to pull off another 1-½ lbs. of fluid during dialysis, plus they gave her two units of fresh frozen plasma (FFP).

Please continue to follow Kacie’s journey and keep praying for her full recovery. Pray that they get the pain under control. Pray for her counts to skyrocket! Pray for the GVHD to clear up and no additional infections creep up. Pray for her comfort and pray that she can get some much-needed sleep. Again, we thank you for joining us on Kacie’s Krusade until she has a complete recovery. Thanks for the many prayers!

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 22, 2002 - Day +193 - Lots Of Prayers Needed...

This journey has been full of many difficult medical challenges and last night was no different. Kacie had an extremely difficult night filled with lots of pain and discomfort. She moaned and was agitated all night. They would give her doses of pain medication, but it would only provide her about 10 minutes of relieve before she would be in major pain all over again. They kept increasing the pain medication doses until finally they had to start her on a heavy dose of a continuous drip of pain medicine. This medicine caused her to sleep all day today, which she really needed.

We were faced with more difficult situations this morning. Last night Kacie had received one unit of red blood cells, two units of fresh frozen plasma (FFP), and two units of platelets. All of this extra fluid caused Kacie to gain a lot of fluid throughout the night. She was very swollen from all the extra fluid. They had to pull off over 4-½ lbs. of fluid during dialysis today.

Kacie’s abdominal area was very distended and hard. Based on the severity of her pain and the way the abdomen appeared, the doctors felt that she may have perforated (or torn) her intestinal wall. They ordered an urgent CT scan of her abdomen and explained to us that they would be looking for free air within the abdomen. If the CT scan shows free air then they would be rushing her to the operating room.

They contacted the surgeon and were prepared to take her to the operating room if necessary. They explained that if they have to do surgery, they would try to sew any tears; however, if the intestinal walls look real bad then they may have to remove a portion of the intestines and put in a temporary section until it heals or worse case they may possibly even have to take out most of the intestines.

We began praying that Kacie wouldn’t have a perforation in the intestinal wall. With having graft vs. host disease (GVHD) in the intestines, it could be very disastrous. After getting back from the CT scan what was probably only minutes appeared to take forever for the doctors to come back and let us know the results. They explained that they didn’t see any free air within the abdomen. Another miracle happened right before our eyes! Praise God!

The doctors felt the GVHD may be causing a lot of the pain and distention of the abdomen. They gave her several medications to help with blood clotting. If she is bleeding within the intestinal walls, they want to try and make it clot so that the bleeding will stop and the intestines can heal. Kacie is on high doses of steroids and also a new medication for the GVHD; however, the best medication would be CSA. Kacie is not on CSA because she had CSA toxicity in the brain and also it is not good on the kidneys, which at this time is important. Dr. Wagner did mention that if the GVHD gets worse he might have to start CSA even though there are those risks.

Kacie tested positive, from a blood culture that was done on Saturday, for bacteria in the blood system. The surgeon believes that since there are bacteria in the blood, it may have shut down the GI system and this may be contributing to her problems. He has ordered that x-rays be done twice a day on Kacie’s abdomen in order to monitor whether she develops any free air outside the intestines.

All of this has made for a very exhausting day. We keep praying that Kacie will continue to improve and not have to go through any additional pain and discomfort. Please pray that Kacie’s GI tract heals and the GVHD disappears. Pray that the bleeding stops and the infections disappear. Pray that her blood counts multiply; she really needs these counts to increase in order to start healing her body. Pray that her body strengthens and she starts to feel better. Pray for her overall full recovery.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 23, 2002 - Day +194 - Unexpected Surgery Tomorrow...

This is another difficult journal entry to write, filled with more medical challenges that Kacie is facing. Her chest x-ray this morning showed some fluid around her lungs. She had several different blood products throughout the night plus the additional steroids that Kacie is taking can make her retain fluid. Thankfully, dialysis was able to help out by pulling off 3-½ lbs. of extra fluid.

Both the morning and evening abdominal x-rays didn’t show any signs of free air. This is excellent news. Kacie has been sleeping most of the night and day due to the amount of pain/sedation medications that she is on. When she does wake up, she appears to have pain in her abdominal area. The nurses give her extra doses of the pain medicine in order to keep her comfortable, thus causing her to be sedated.

We learned today that Kacie has tested positive for infections within the blood. Since Saturday she has tested positive from different blood samples for bacteria and yeast. There have now been four different samples that tested positive for bacteria and so far one tested positive for the yeast. The doctors informed us that Kacie has to have her hickman catheter line removed because it could be harboring the infections.

Kacie is scheduled for surgery tomorrow morning at 7:30 a.m. to have the hickman catheter removed and a quintin catheter inserted into the main artery within her neck. Usually when someone has a blood infection the doctors remove all lines (or catheters) until the infection is cleared up. Kacie needs to keep a double line, and of a certain diameter, in order for her to have dialysis plus she desperately needs all her IV medications. The CV Radiologist came by to explain the procedure. We were concerned whether Kacie would have to be intubated during the procedure. He explained that it would be the decision of the anesthesiologist. We will be meeting with them in the morning.

Dr. Wagner consulted with the infectious disease specialist, Dr. VanBurik, concerning the yeast infection. They are waiting for the species to be identified; however, they are pretty confident that it will show up as candida utilis, which is the same yeast that has shown up before. Since Kacie is struggling with the GVHD and other issues, such as kidney function, it is difficult for the doctors to determine the best way to treat the infections. She is already on broad coverage for the yeast and for various bacteria. We are excited that Dr. Wagner and Dr. VanBurik are working together during this time when Kacie really needs their help. They make an excellent team and because of Kacie’s critical and delicate medical situations, we feel very fortunate to have this team working together to determine the best plan of treatment. They are the ones who helped her through the times when she struggled with meningitis. There are a few different medications that they could use to treat the yeast, but they have various side effects that are too risky for Kacie’s situation. There is an experimental drug that they may decide to use. They are planning on contacting the different pharmaceutical companies in order to claim compassionate permission to use this drug on Kacie. Dr. VanBurik explained that she has used it successfully around twenty times in the past year.

Kacie has not been bleeding as much today. The doctors have decided to give her several blood products and clotting factor products prior to surgery in the morning. They want to reduce the risk of bleeding. They still haven’t gotten the results back on the tests that were sent concerning the blood clotting factors.

As this journal entry explains, Kacie is in need of a lot of prayer and special healing. Please pray that the surgery goes well, that she doesn’t have a problem with bleeding, and she recovers quickly. Pray that her blood counts multiply and that her blood clotting factors are in normal range. Pray that her pain, infections, and GVHD all disappear. Pray for her overall healing. Pray that God will guide the doctors and nurses in all their decisions on Kacie’s care and that he guides the surgeon during her surgery. Please pray for all the other children as well.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 24, 2002 - Day +195 - Back From Surgery...

The day started early, especially since they wanted Kacie in the operating room at 6:30 a.m. Her surgery was supposed to start at 7:30 a.m., but they wanted to get her in the pre-op area early so they could get her prepared. They were late getting started because the nurses had not started her blood clotting medications early enough. By the time she was taken to surgery it was around 8:40 a.m.

It is extremely hard to watch Kacie go through yet another surgery. We can only pray that by removing the hickman catheter, it removes any blood infections within her body. The surgery was only supposed to take about 30 minutes, but we did not get back from surgery until noon.

The surgeon had a little dilemma during the surgery. They had removed the hickman catheter and then placed a peripheral line in her arm so they could administer medications until the new quintin catheter was installed. They tried to use a pediatric quintin catheter, but it was too short. Then they tried to use the next size catheter, but it was too long. The surgeon said that Kacie needed to grow some. They spent quite a bit of time searching through stock rooms trying to find an adequate size catheter that they could use. Finally, the surgeon made a custom catheter to be used. It actually is probably better than the quintin catheter since the quintin catheter is made out of a more rigid tubing.

The catheter was put into the area of her neck right above the collarbone. Kacie did very well during the surgery. They did have to intubate her for the procedure, but right after she was in the recovery room they extubated her.

Once she came back to the room she was in severe pain. They had to quickly increase her pain medications several times until she was comfortable and dosed off to sleep. She rested most of the day and towards the evening began waking up a little. She seems more comfortable since they’ve increased her pain medications.

Praise God! The doctors were able to get approval for the experimental drug that Kacie needs to help fight the yeast infections. Earlier today they thought it would be a few days before we could get the medicine since they would have to file lots of paperwork. Then the paperwork has to be submitted through various legal committees for approval. Thankfully, the bureaucratic paperwork was quickly submitted and approved. Then we discovered that there was enough of a dose at this hospital so that she could start on this medicine tonight. The pharmaceutical company will send a week’s supply through overnight delivery so that she doesn’t have to skip any doses.

Once we got back from the operating room, she had to have dialysis. The chest x-ray that was done prior to dialysis showed that her lungs looked very wet. After dialysis, in which they pulled off 3-½ lbs. of fluid, the x-ray that was done looked a lot better.

Today was a very busy and emotional day, so I’m sure some of the details have been left out. Overall we are thankful that Kacie did well through the surgery and we know that she still has several very critical medical issues. Please pray that all infections clear up within her body. Pray that the GVHD also clears up quickly. Pray that as the infections and GVHD clear up, her white blood count skyrockets! She is really in need of her white count coming in. The doctors are getting very concerned about her low counts. Pray for the doctors’ wisdom since they are reaching uncharted territory (per Dr. Wagner) in Kacie’s treatment plan. Please pray for her complete recovery.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 25, 2002 - Day +196 - White Cells Are Critical!...

This has been an emotionally draining day so this entry will be short. There are not a lot of details. Kacie is still in critical condition, trying to recover from graft vs. host disease (GVHD) and the bacteria and yeast blood infections. Kacie really needs her blood counts to start multiplying. The doctors are concerned about the counts staying so low. Either the counts are being suppressed from the GVHD, infections, or medications, or the area in the bone marrow is not fertile enough to allow the marrow to flourish.

Pray for Kacie. Pray that the pain subsides. Pray that the GVHD and all infections leave her body. Especially pray for her blood counts to multiply. Without a good supply of white blood cells and neutriphils Kacie could continue to get more infections. Please pray for Kacie to get better so that we can come home. Pray for our strength and faith during these difficult times.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 26, 2002 - Day +197 - Please God...Intervene...

This day was even more emotionally draining than yesterday so this entry will also be short. Kacie has had a few blood tests show positive for bacterial and yeast infections since her new catheter was put in. The doctors are concerned because she needs the white blood cells and neutriphils to help fight off these infections. They have scheduled Kacie for a CT scan, from head to toe, in the morning. They will be looking for any abscesses, which are pockets of infections. If they find abscesses then according to the doctors, Kacie cannot be cured. Kacie needs God to intervene once again.

Our prayers are for God’s will to be our will, to cure Kacie of these horrible illnesses and allow her to return home fully recovered. Please pray that her blood counts increase and the infections disappear. Pray that our hope and faith is restored through God’s work.

Smiles & Giggles,

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

April 27, 2002 - Day +198 - The Gates Of Heaven...

The white pearly gates of heaven are wide open to welcome a perfect angel into God’s kingdom. Jesus is waiting to hold and hug our precious little one. Kacie will be joining the other little angels in heaven. Please pray that this evening is peaceful as Kacie leaves us here on earth to be with her heavenly father.

Kacie has touched more lives than we can imagine. We receive letters everyday of people who have been praying and following her journey. God has a better place for her now that is filled with no pain and only happiness.

We’re updating this journal entry early so that we can spend every precious moment with her. We will update more as we are able. We will be planning a “Celebration of Life Ceremony” for Kacie soon and will update the journal entry with details.

Please keep us in prayer this evening. Pray that Kacie is comforted and rejoices at the party that the Lord has planned for her. God bless each and every one of you.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

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