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September, 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 September 20, 2001 - Our Journey Begins... The day has finally arrived for us to head to Minneapolis, Minnesota for Kacie's bone marrow transplant. Our car is loaded so full that the tailgate is almost dragging the ground. Donald describes it as a plane getting ready to lift off and all you can see is the sky. We’ve never had to pack for a four-month stay. Hopefully, we haven’t forgotten anything important! This past Tuesday, September 18th, Kacie had a doctors’ appointment with Dr. Owen at King’s Daughters. Her blood levels were the best since she was first diagnosed with Fanconi Anemia and Aplastic Anemia in April!!! Dr. Owen and her nurse, Teresa, were amazed. Dr Owen made a comment about how healthy she looks and her blood levels being good. He said this is the healthiest that he has seen a child prior to transplant. According to all the doctors that she has seen, they all have stated that it is important to go to transplant while she is healthy. Mickey & Minnie Mouse is on travel on the Disney Cruise Lines and they came to King’s Daughters in Norfolk, VA to visit. Kacie was extremely excited!!! She thought it was very nice of them to come and wish her well before we leave for Minnesota. Kacie’s teacher, Mrs. Matheson, brought over a beautiful wall hanging that her 3rd grade class from Grafton Bethel Elementary School made for her. It will make Kacie’s room bright and cheerful! Thank-you!!! This week was very stressful and hectic, but we were able to visit with several family members and friends. Kacie was able to stay with Grandma Normie (Norma Faulkner) for a few days. She was also able to stay with Grandpa & Grandma Honey (Sam & Jeanette George) for a few days. We are leaving with mixed emotions. My mom, Grandma Honey, is in the hospital as we leave. Grandma Honey and Grandpa will be taking care of our oldest daughter, Erin, while we are away. My mom is getting better and Erin should be a big help for her. We are praying for a speedy recovery for Grandma Honey. We have a long journey ahead, and we are trying to make it as comfortable and pleasant as possible for Kacie. So far, traveling through Virginia, Maryland, Pennsylvania, and Ohio has been smooth. It is a beautiful drive, especially during this time of the year, since the leaves are changing colors. The leaves are green, yellow, brown, orange, purple, and red! It is like driving from one season, Summer, to another season, Fall. Hopefully, we won’t see the next season, Winter, when we first get to Minnesota. Our plans were to stop in South Bend, Indiana to stay the night, but the drive was longer than expected. So, we decided to stop right outside Cleveland, Ohio. We got in just in time to hear President Bush speak. What an awesome speech!!! Our thoughts and prayers are with all victims, their families, and loved ones; as well as our President and all military personnel and families. We have a long day ahead of us again tomorrow, so until tomorrow… Smiles & Giggles, Donald, Kathi, & Kacie September 21, 2001 - On The Road Again... It was a surprise waking up to a temperature of 57 degrees. We all got a good night of sleep and were ready to hit the road. We left Ohio, then drove through Indiana, Illinois, and Wisconsin. When we got past South Bend, Illinois, we drove from Eastern Standard Time into Central Standard Time. Now we have to change our biological clocks to match this time zone. Our intentions are to drive all the way in to Minneapolis, Minnesota; however, if we get tired we will stop and find a room. We just discovered that the Ronald McDonald House is full, so they have registered us to stay at the Best Western. It will probably be at least a week or two before we can move into the Ronald McDonald House. We will visit the Ronald McDonald House tomorrow and hopefully meet Cole. Cole also has Fanconi Anemia and just went through his bone marrow transplant. He just had a birthday and turned two years old. We have been keeping up with Cole and his family through their website. God Bless Everyone! Thanks for keeping Kacie and our family in your prayers. Smiles & Giggles, Donald, Kathi, and Kacie
September 22, 2001 - America The Beautiful...
Last night we decided to stop in Baraboo, Wisconsin at the Pinehaven Bed and Breakfast. We slept well and awoke to a beautiful setting overlooking the lake and the mountains. Kacie thought it was so beautiful and she really loved their horses. Marge and Lyle are wonderful hosts and Marge is a great cook! They served fresh fruit, homemade applesauce, zucchini bread, bacon, sausage, and belgian waffles. Reflecting on the beauty of our land… We spent a little bit of time together in their gazebo looking out at the mountains. As we traveled through several states, we realized that there is a lot of beautiful land in America. Americans stand strong and it is evident by all the American flags waving from each of the overpasses. We are staying at the Best Western until there is a room for us at the Ronald McDonald House. We visited Cole and Amanda Smith today. Cole just turned two years old and he also has Fanconi Anemia. He is on day +59 after transplant. We’ve been keeping up with his progress since he came to Minnesota for his BMT. Cole looks great! We really enjoyed meeting and talking with them. Amanda, Cole’s mom, described what they had been through. It was very helpful to talk to someone who is experiencing the same kinds of things that we will be facing. Erin: Congratulations on earning your green belt in Karate! We are extremely proud of you! Congratulations to all the other students who advanced in their belt ranks at Vernon Mason Karate. Jack, congratulations on earning your black belt. We are calling it an early evening tonight. Watch out Mall of America… Kacie is coming tomorrow! May God bless you all and thanks for keeping Kacie and our family in your prayers. Smiles & Giggles, Donald, Kathi, & Kacie
September 23, 2001 - Mall of America...Here We Come...
We awoke to 45 degree weather this morning. It is very cold. It is definitely a change from the warm weather that we left in Virginia. We even had to wear sweaters. Mall of America was a lot of fun for Kacie. She was able to ride a few of their rides in Camp Snoopy. She also went to the Cereal Adventure and received a lesson in how cereal is grown and processed. Then we went shopping to look for a special gift for Kacie’s donor. We feel extremely blessed to have this special girl offer the gift of life to Kacie. It will be a year before we can meet her and only it she consents. Already we feel a special closeness and we can only pray that we will be able to meet. We head to clinic at 8:00 a.m. tomorrow, so we are going to bed now. We’ll update tomorrow evening. Smiles & Giggles, Donald, Kathi, & Kacie September 24, 2001 - Tests...Tests...and More Tests... What a busy day! We arrived at the Phillip Wagenstein Building (PWB) clinic at 8:00 a.m. and we didn’t get back to the hotel until 7:30 p.m. We received our itinerary for the week. It is a very busy schedule filled with a lot of tests, classes, and consultations with the doctors. Some of the tests are performed at the PWB and others at Fairview University Medical Center Hospital. Today, Kacie had to have a lot of blood drawn. They need to draw a total of 63 cc of blood for various tests prior to being admitted into the hospital. The nurse had a difficult time, so she had a different nurse try to draw the blood. It took three times before they could get blood. Kacie was very upset and wanted her big sister, Erin. Since they have to draw so much blood, they only took half today. They will draw the remainder once her central arterial catheter is in. For the third week in a row, Kacie’s CBC (complete blood count) has been increasing. This is exciting news for us! Today, Kacie’s white blood count (WBC) is 3.5, her red blood count (RBC) is 3.61, her hemoglobin is 13, platelets are 46,000, and ANC (absolute neutrophil count) is 1400!!! To help explain these numbers, her numbers have been as low as: WBC 2.1, hemoglobin 8, platelets 23,000, and ANC 420. The normal ranges are suppose to be: WBC 4.0-15.0, RBC 3.7-5.3, hemoglobin 10.5-14.0, platelets 150,000-450,000, and ANC 1300-8100. To summarize, her hemoglobin and her ANC are both in the normal ranges now. Her WBC and RBC are close to normal ranges. The platelets are the only number that is still very low. She had chest x-rays, EKG, pulmonary function tests, and cat scans of her chest and sinus cavities. We had a consultation with the CV Radiologist to discuss having her central arterial catheter (known as the Hickman) put in. We met with the work-up doctor, Dr. Scott Baker, to discuss Kacie’s medical history and for a physical. We also had an extensive BMT (bone marrow transplant) class. There is so much information for us to learn. Keep up the prayers!!! Based on Kacie’s blood counts, we are seeing wonderful miracles take place. Tomorrow we have another full schedule, so we are calling it a night. Have a great day tomorrow! Smiles & Giggles, Donald, Kathi, & Kacie September 25, 2001 - Tests...Training...and More Training... We arrived at Fairview University Medical Center Hospital at 8:00 a.m. for another busy day. Kacie had ultrasounds done to check the spleen, pancreas, liver, kidney, gallbladder, and to check the blood flow between the different organs. She was scheduled for an MRI of the liver, but we discovered they needed to put an IV in so that they could administer nuclear medicine (dyes). Kacie got extremely upset, especially since they had a hard time drawing blood yesterday, so we asked that they reschedule until after her Hickman line is put in. We want to try and minimize the pain that she has to go through. The radiologist showed Kacie the MRI equipment and discussed what she will have to do. Kacie was happy that this test was rescheduled. Training…training…and more training! We learned how to take care of the Hickman line. This included flushing the line with heparin, changing the ends on the lines, and changing the bandages. They even let Kacie practice flushing the lines. She is getting so much training at an early age. Next, we met with the Caregivers Support Group. This class is designed to provide information to those who will be taking care of the transplant patient. They also provided information on different resources that are available. They stressed the importance on the caregivers to stay mentally and physically strong in order to be able to provide the best care to the patient. Our last class was to meet with the nurse coordinator, Pat Fidler. She provided us a book that contains all the information on the various medications and treatments during the entire transplant process. Kacie will be admitted into the hospital on Wednesday, October 3rd and she will receive the new bone marrow on Wednesday, October 10th. Kacie is scheduled for several tests and consultations tomorrow. This Thursday, she will undergo surgery for a bone marrow biopsy and the procedure to install the Hickman line. We will have to be in the operating room around 5:00 a.m. We stopped by the Ronald McDonald House to do laundry (really for Donald to do laundry). Tonight is activity night! Kacie made several flower bookmarks. She made a special one to send to Erin. Thanks for all your prayers. God Bless you all! Smiles & Giggles, Donald, Kathi, & Kacie September 26, 2001 - A Lot Of Information To Absorb... We just found out that there was an article in the Daily Press today on Kacie. It is on the front page of the Health section. Erin is planning on mailing us a copy so that we can read it. Today was another very educational day! We started off by meeting with the Infectious Disease Specialist. Kacie was evaluated based on her medical history and physical condition. We learned about the different concerns that the doctors will be monitoring; i.e. primarily bacterial, viral, and fungus infections. We learned about where mold and fungus grows, which is on walls, in carpet, ductwork, and other places where moisture sets such as household plants. We learned about different measures that we should take in order to provide a more sterile environment around Kacie. We spent quite a bit of time consulting with the Radiology/Oncology Specialists. They described a lot of the bone marrow process, the possible side effects, and answered a lot of the questions that we had. They described the process of the total body radiation and showed Kacie pictures and the equipment that they will be using. They measured Kacie’s complete body dimensions so they will be able to calculate the proper amount of radiation to all areas of her body. Then Kacie had an echocardiogram performed. At 2:30 p.m., we met with the Care Partners. This group provides various services for bone marrow transplant (BMT) patients. They will assign a family volunteer and unit volunteers to work with us during our stay. They will run errands, be a friend, provide activities for Kacie, and other things that we may need. Then we met with Jason Albrecht, with the Child Family Life. He spent a lot of time describing everything to Kacie. He provided her a medical box with medical supplies and a doll with a catheter. He gave us a tour of the operating room area and let Kacie talk with the nurses in that area so that she would feel comfortable. Please continue to pray for Kacie. She is scheduled for surgery tomorrow morning. We have to be at the hospital at 5:15 a.m. and she will have a bone marrow biopsy at 7:15 a.m. and the Hickman Placement at 8:00 a.m. During these procedures, we will be in the waiting room area right outside the operating room. The surgeries are scheduled to be complete around 9:00 a.m. CST. We will be allowed in the recovery room at that time. Once she is released from the hospital, we will be coming back to the Best Western and let her sleep. Donald will be going to the Ronald McDonald House and sterilizing the room that we will be moving into. We were fortunate enough to get into the newer section of the Ronald McDonald House that has a separate bedroom with small kitchenette. Our new address will be Don, Kathi, & Kacie Goodwin, c/o Ronald McDonald House, 608 Ontario Street SE, Building 3 - Room 27, Minneapolis, MN 55414. We’re headed to dinner and we plan to call it an early night. We’ll write as soon as possible tomorrow to let everyone know her progress. Smiles & Giggles, Donald, Kathi, & Kacie September 27, 2001 - A Day of Surgery... We know everyone is concerned and wanting an update on Kacie’s surgery, and fortunately we were able to break away for a moment to send a quick update… What an early day! We arrived at the hospital at 5:15 a.m. for Kacie to have a bone marrow biopsy and her central venous line put in. All the nurses, doctors, and social workers have been extremely nice and helpful. They spend a lot of time explaining the entire process and showing Kacie all the equipment so that she feels comfortable. I (mom) was able to go into the operating room with Kacie until the anesthesia was working. Kacie thought I looked very funny in the scrub outfit that they made me wear. Dad decided to take a picture of us. Kacie was a real BRAVE trooper going into the operating room. She didn’t even cry. She took a female doctor doll in with her. She also took her bear that her 3rd grade class (Mrs. Matheson) at Grafton Bethel Elementary School sent to her. Thanks again for the bear!!! Kacie came out of surgery around 9:00 a.m. and has been sleeping quite a bit. She did wake up a little and said her back (hip area) and her neck was hurting, so they gave her some pain medicine. She has been asleep ever since, and it is 1:30 p.m. now. Donald went on over to the Ronald McDonald House to clean and sanitize our room. He will be moving all of our things over. Since it is not too busy in the surgical area, they decided to let Kacie sleep until we are ready to move over, that way we only have to move her once. Tomorrow is another very busy day. She is scheduled for some nuclear tests in the morning. Then we will meet with her doctors to discuss all the tests results and the plans for the transplant. We really appreciate everyone’s prayers! We have a long journey, and it really helps to have everyone’s support and prayers. Many thanks and God Bless! Smiles & Giggles, Donald, Kathi, & Kacie September 28, 2001 - A Busy Week Is Complete... Kacie had nuclear medication tests of her kidneys this morning. The test took four hours. They injected nuclear medicine into her new central line, then had us come back around every 30 minutes to draw blood and inject more medication. She was happy that everything is now done through the central line and she doesn’t have to get any more IVs. Her skin was sensitive to the type of tape that they used during surgery, so they changed her bandages and put on a different type. She is a lot more comfortable now. We had more meetings with clinical social workers this afternoon. They wanted to make sure that we understood the process and they explained additional services that are offered. They also provided us information on Kacie’s schooling. Kacie had to have her central lines flushed at clinic and we met the nurse coordinator to discuss the plans for the weekend and next week. We will have to bring Kacie in tomorrow and Sunday for them to flush her lines and change the bandages. We are scheduled for an MRI of her liver on Monday. Also, we will be meeting with her doctors on Monday to discuss all the tests results and make the final plan concerning the transplant. Kacie is good with making friends with whomever she meets. Yesterday, she met a young girl on one of our shuttle rides to the hospital and they really had a nice conversation. Her name is Molly. Well, Molly left Kacie a note at the clinic today for Kacie to call her so that she can show us around Minneapolis. We will try to meet up with her sometime this weekend. Everyone that we’ve met has been very nice. Donald spent some time over at the Ronald McDonald House earlier today to finish cleaning up so that we could move in. We have just finished carrying everything upstairs to our room. We were so busy today that we didn’t have lunch, so we are going to go get dinner. It has been an extremely busy week, but we got a lot accomplished. Hopefully, we will be able to organize everything this weekend and rest a little. Have a great weekend! Take care and God Bless. Smiles & Giggles, Donald, Kathi, & Kacie September 29, 2001 - A Change In Plans... Kacie had an appointment at clinic this morning to change her bandages and flush her central line. The appointment was scheduled for 9:15 a.m. and we didn’t get finished until 1:30 p.m. When Kacie woke up this morning she was complaining of stomach pains. Every time we started to leave the clinic, she started having stomach pains. The nurse contacted the doctor on call and he ordered tests to make sure she wasn’t having a urinary tract infection. The tests came back normal. The doctor then ordered x-rays of her abdomen area. He believes Kacie is having some acid reflux issues, which she has had in the past. Unbelievably, Kacie got the hiccups and the stomach pains stopped! She was like a different person. Kacie had two young girls visit her while she was at clinic. Their mom is being admitted in the hospital on Tuesday for a bone marrow transplant. Their dad had told them how brave Kacie has been and they wanted to meet her. The girls gave Kacie some very beautiful handmade stuffed animals that they helped make with their grandparents. Kacie wants to put them in her room at the hospital because they are very bright and shiny. Donald did an excellent job of getting our room ready at the Ronald McDonald House. We went grocery shopping tonight and finished putting things away. Now that Kacie is feeling better, she wants to go to the play area. We have clinic again in the morning, so we need to let her play for a little bit, so we can hurry and get to bed soon. Kacie misses her big sister, Erin! Smiles & Giggles, Donald, Kathi, & Kacie September 30, 2001 - Minnesota Vikings Win... Kacie had a quick visit at clinic this morning. She had her catheters flushed and her bandages changed, then we had a free day!!! We visited mom’s favorite stores, the craft store and the party store. Kacie and mom are planning on making some smiley face catheter necklaces. You have to secure the catheters, so we felt this would be to best way and it would look good too! We are also planning on making extras for some of the other children that are here. It would be easier if we had a sewing machine here, but these will be special because we will have to hand sew them. We decided to take a tour around Minneapolis, across the Mississippi River. Well, we ended up in Viking land right beside the Metrodome. The Viking game just let out and we were stuck in Viking traffic for a long time. Congratulations to the Minnesota Vikings for their 20 to 16 win over the Tampa Bay Buccaneers! The Minnesota Viking fans really show their spirit. There were lots and lots of purple jerseys through out the area today. Tomorrow Kacie is scheduled for an MRI of the liver. In the afternoon, we meet with the doctors to discuss all tests results and to sign the consent forms. Please keep us in prayer, this is both difficult and stressful. God Bless everyone. Smiles & Giggles, Donald, Kathi, & Kacie
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