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June 29, 1999: Still having headache & nausea. Went to clinic for Ara-C. Received phone call while in clinic that they have a donor who is a perfect match, and that the transplant will probably happen sometime in July! I'm feeling scared and excited! I pray that everything works out well. June 28, 1999: Went to clinic for first dose of IV Ara-C. Greg was feeling pretty rough most of the day with a headache & nausea, so he stayed in bed. June 27, 1999: Greg is feeling better after having a headache and generalized muscle & joint pains in the morning. His rash is improving. His temperature has been up to 99.5 intermittantly over the last three days. He's been watching TV, building with his Legos, & playing videogames today. He was boxing and wrestling with his brother this evening. Sure is good to see him having a good time! June 24-26 1999: Admitted to hospital for bone marrow aspiration & lumbar puncture to check for presence of leukemic cells. Spinal chemo given. Abscessed molar pulled prior to giving chemo, while his white blood dell count was still high enough to fight off infection. Otherwise, he would have to wait two or three weeks, time we may not have as the bone marrow transplant draws near. He still needs to have his teeth cleaned & cavities filled prior to the transplant. He developed a generalized rash, cause unknown, but chemo drug suspected. Planning to begin using a German treatment protocol that has had some success with patients who experienced a slow remission. Received first dose of 6-MP (chemo drug) on June 25th. Came home June 26th. June 8, 1999: Greg got his last dose of VP-16 today. Greg has developed foot drop, and the physical therapist came in to evaluate him. She recommended stretching exercises and ankle braces. We got to go home today! June 7, 1999: Dr. Hum is back on rounds. I picked up a couple of tables I bought on auction line last night that have lego surfaces on the tops, and storage bins underneath. Greg got his last dose of ifosfamide today. The people on auction line said "Hello" to Greg on TV tonight. June 6, 1999: Got up around 11:00 and ate a bowl of cereal. Walked twoce in the hallway. A couple from church came by to visit. Otherwise, it was a pretty uneventful day. June 5, 1999: Today's Angela's 17th birthday. Dr K is on for the weekend. Uneventful day. Greg got his chemo, took a sink bath, and used the exercycle for 5 1/2 minutes. He stayed up until 3:30 am. June 4, 1999: Greg's having joint pains in his legs, so they gave him demerol every three hours.Greg slept in until around 11:00. They ordered his benadryl every four hours around the clock. After getting a dose of that along with some decadron, he got his VP-16 and didn't have any problems. About four hours after the ifosfamide, he got nauseated. He finally got to sleep around 11:00 tonight. His nurse who had the premature baby came back to work four hours today. She didn't take any patients, so she had a little time to pop in to say hello. It sure was good to see her again. Her baby's on the vent, and improving slowly. June 3, 1999: Greg was admitted for another five-day round of VP-16 and ifosfamide. Being a Thursday, he had to go to the food court for Schlotzsky's, so he told the nurse that she could start his IV after he got back. He only got ifosfamide today, and they'll give him the VP-16 starting tomorrow. We stayed up until after midnight. May 14, 1999: Greg was up until 4:30 am this morning. He woke up too late to get his breakfast tray, so he asked me to go down to the food court in the basement and get him something. The nurse came in to premedicate him with the benadryl and solumedrol, and was preparing to get his last dose of VP-16 when I left. As I was getting on the elevator to come back upstairs, I heard over the intercom, "Code Blue, Pediatrics. Code Blue, Pediatrics". My heart was racing as the elevator stopped on every floor. When it finally got to the fifth floor, I got out and turned the corner to see the ceiling lights indicating that the code was in Greg's wing. Racing down the hall with pop-tarts, oatmeal, and hot cappuccino on the food tray, I got to the end and made my right turn, only to see the code cart and eight nurses standing outside Greg's doorway. My eyes must have been huge, because one of the nurses immediately said "It's not him. It's okay, September. It's not Greg". Looking again, I saw people coming out of the room next door to Greg's. A baby had stopped breathing, but was crying by the time I got there, and was fine. Three hours later, Greg had eaten his breakfast, my heart was beginning to slow down, and we went home. May 13, 1999: Greg didn't sleep very well last night, and he tried to nap all day without any success. He ate a schlotzsky's sandwich for lunch, dinner, and a midnight snack! He also wants another one for tomorrow. He walked one lap in the hallway today, and played a card game for 15-20 minutes. He got his fourth dose of VP-16 today without any problems. He had a good day today, laughing, joking, and picking on the nurses. May 12, 1999: Greg slept better last night. They drew four more vials of blood to send to Oklahoma City for the bone marrow testing. Some friends from church brought him the movie "Need for Speed". He got the VB-16 here in his regular room today, and didn't have any problems after getting the benadryl & solumedrol first. He seems to be feeling a little better as the day progresses, and he ate an Arby's beef "n cheddar for dinner, and 1/2 of a club sandwich for a midnight snack. He said he'd walk in the hall tomorrow and get up in the chair for meals. May 11, 1999: Greg was up every hour last night, and finally got to sleep this morning. He got up around 11:00. I stayed up all night drawing pictures for the Leukemia Society's art auction. Greg went to PICU for his VP-16, and tolerated it without any problems. His speech teacher came in for Greg's last lesson this year. He became nauseated for the rest of the evening after the ifosfamide was started, and threw up twice. They gave him compazine, benadryl, and zofran. They increased his dose of restoril, and held the dose of ativan. May 10, 1999: Greg went to the playroom and played with Skippy the bunny. Dr. Fisher is on today. He said that the VP-16 is what had put Greg into remission, and that he really didn't want to withhold it from Greg. Looking back at the last time he'd had it, they noticed that Greg had been getting benadryl every four hours for sleep and itching, and that's probably what kept him from having a reaction then. Dr. fisher had talked with some other doctors at St. Jude's about it, and decided to give it another try. They took Greg to ICU, just in case, and premedicated him with benadryl and solumedrol. Then they ran the VP-16 in over three hours instead of one hour. Everything went fine, so he'll get it for four more days. Dr. Z brought Greg a cheeseburger, and he ate the whole thing! Greg is very frustrated about exercise. He says there's no point in getting his strength back up if he's just going to be bedridden in Oklahoma City and have to do it all over again. We agreed to discuss it later and compromise on an exercise plan. he's not feeling very well tonight, complaining of traveling mid-abdominal pains and stabbing muscular ribcage pains. Ativan, Demerol, Benadryl, & Restoril given before he was finally able to get to sleep. Make-A-Wish called today to tell Greg that they're going to be able to get him a computer. May 9, 1999: Greg didn't eat breakfast or lunch today, complaining of abdominal muscle pain. They gave him some demerol, which seemed to help. He did eat about half of his dinner, but he's not really drinking anything. He's been complaining of a "mucousy feeling" in the back of his throat since the anaphylactic episode. He's been staying in bed trying to sleep all the time, so I made him get up in the hallway to walk three times. He also had to take his bath in the tubroom instead of a sinkbath in his room. I also made him keep the lights on all day, opened the blinds, and not get benadryl during the day. He got mad at me for that, and was pretty cranky this evening. We talked about the complications of immobility. He told me he was afraid of dying from the transplant and it's side effects. May 8, 1999: Greg was up every two hours last night to go to the bathroom because they've got his IV fluid rate going so fast, but otherwise he slept pretty good. His French teacher brought some more Star Wars figures for him to play with, and another poster from the class. Another teacher and her family came by with some trick airplanes, and they flew them around the room for awhile. The Make-A-Wish foundation came by to see what Greg would like as a wish. He talked about going to space camp, but he was afraid of getting sick on the trip and wasting his wish on a ruined trip, so he asked for a computer so he could have something to do while he was in Oklahoma City. "Besides", he said, "a trip would be over in a week, but I'll still have the computer later on." He was also concerned that he might not learn as much at space camp as he would if he was well, so he asked me if I'd send him later on. They brought Greg some bactroban cream for his peeling hands and dry cracked skin. May 7, 1999: Bone marrow aspiration & biopsy done. No leukemia showing still! He was admitted for five days of chemo with VP-16 and ifosfamide. They were starting the VP-16, and the first drops were just getting in when Greg started yelling "My face is burning! My face is burning! Help! I can't breathe! I can't brea...!" Just as suddenly, he started turning red all over. The nurses gave him some solumedrol and benadryl, and the anaphylactic reaction stopped. His breathing returned to normal, but he had a sore throat the rest of the day. They went ahead and gave him the ifosfamide, and he didn't have any problems with that. The palms of his hands are peeling. as a last sign of the terrible rash he had last month. Greg's speech teacher and Dr. Z, his homebound teacher, came by today. May 5, 1999: Greg's been watching TV and playing with Legos the past three days. We went to the chemo clinic today for lab work, and everything looks great! His CBC is steadily improving. We'll do the next bone marrow aspiration in a couple of days. May 1, 1999: Greg was discharged, and when we got to the car, the tire was flat, but I didn't notice it until I was leaving the parking lot. Fortunately, the gas station was only a block away, so I drove on it anyway and got air. It sure is good to be home. We took a bunch of pictures when we got here. April 30, 1999: Greg slept until 11:30 am, and ate lunch. Afterwards, we discussed what Dr. Selby had said about the transplant. That was really tough. Greg cried, and asked "Why me?" I told Greg that he would have the choice of whether or not to do the transplant, and that if things got too hard on him, that he could stop at any time. He asked, "You mean the leukemia could cause my organs to fail, or the transplant could cause my organs to fail? Why me? That's not fair!" Today was really, really tough. His bone marrow biopsy came back, and shows no detectable leukemia! April 29, 1999: Greg's finally gone into remission, with nothing showing in the bone marrow aspirate, however the biopsy is still pending! I went to Oklahoma City today, and talked with Dr. George Selby about the bone marrow transplant, chemo, total body irradiation, risks, side effects, Kleinfelter's syndrome, and risks of death. He said that there was a 25% risk of death in the first 100 days, 35% risk of death in the following 1-5 years (mostly in the first year), and 40% chance of five-year survival. Next, I went to Jones, outside of Oklahoma City, and met with the friends of my friends, who had promised us a place to stay while we were in the city. Greg will have to stay nearby for at least a month or two after he is discharged, in case he has any problems and needs to be readmitted. I didn't get back until 11:30 pm. April 28, 1999: Went to PICU for bone marrow aspiration & biopsy, then drove his own wheelchair back to his room. After taking a nap, he played with his legos. Dr.Z came and brought a space article from the newspaper. A friend from my work brought him a lego rocket. Later, Greg drove the wheelchair down to the food court and back. He got mad at me for telling him to slow down, but he got wore out & had me help him back. That is, until we got to the fifth floor where his nurses could see him. As soon as we got off the elevator, ZOOM, he was down the hall! After picking out his dinner, he only ate one pop-tart. April 27, 1999: Greg was tired all day, & tried unsuccessfully to go to sleep using ativan & benadryl. He hasn't had any appetite today, and didn't eat all day, complaining of bloating and abdominal discomfort. April 26, 1999: Attempting to nap most of the day, wakened frequently with vital signs every two hours, visitors, meals, etc... His legs and ankles are aching today, so they increased his Demerol dose to 40 mg. They changed his ativan to pills so they would help him sleep longer. He continues to request benadryl every four hours. He waited all day to get a unit of blood because of his fever which is cycling at 100.5-102.5. He finally got it around 8:00 pm. His nurse had a baby girl by c-section today, because her placenta had started to separate. They're both doing fine. Greg was very fatigued today, and had no appetite. His fungal cultures came back negative, so they drew more blood cultures. Dr. Fisher wants to do another bone marrow biopsy in a couple of days. Greg will be in the hospital at least until the weekend. We were supposed to go to Oklahoma City together on Thursday, so I'll have to go without Greg to meet the doctors there, and tour the hospital. My friends were in Oklahoma City last weekend, and told their friends there about Greg. Their friends in Oklahoma City raised some money to help with our expenses, and offered us a place to stay when we are there for the transplant. April 25, 1999: Greg's blood cultures have come back negative, so they drew fungal cultures. His temp has been 100.5-102.5 today. He's very fatigued, sleeping off & on all day & night. They gave him 25 mg of demerol for muscular pain, ativan for sleep, and benadryl for sleep. His skin is blotchy from the rash he had before. They collected 91 units of blood from the drive at church today! April 24, 1999: Greg's arms & legs were sore last night, and he developed a headache & runny nose. We called Dr K, and gave Greg some ativan & benadryl. He slept about 4-5 hours, and his headache got better, but he started shivering late in the evening, and at midnight, his temp was 100.7. By the time we called Dr. K, it was up to 101.0, and it was 101.8 by the time we left the house for the hospital. They immediately started him on antibiotics, then one of his favorite nurses started leaking amniotic fluid at 28 weeks gestation, and had to be admitted herself. Greg felt so bad, because he had kicked & screamed while she was trying to access his port when he was first admitted, so they could start the antibiotics. He was yelling "The Emla (deadening) cream hasn't had time to work yet. Wait another 30 minutes!" They couldn't wait, and then it didn't even hurt, and he felt real silly. April 23, 1999: We had over 60 people donate blood at work today, and I think there were 45 or 50 new people signed up to be marrow donors. They also had a marrow drive last month when one of our respiratory therapists relapsed, and he also needs a bone marrow transplant. April 22, 1999: Greg went to the chemo clinic today for lab & exam. Afterwards, we went to the grocery store. He was able to lift some items and put them into the basket, so he did pretty good. They started the blood drive at work today and had 37 people donate, with 31 new names added to the bone marrow registry. April 21, 1999: I took Greg to school to see everybody, and we got there between classes. He stood in the hallway with his mask on for 10-15 minutes, and I looked sown and noticed his legs were turning purple, so we went into the office & had him sit down for about five minutes before he walked back to the car. That really wore him out. April 20, 1999: Went to Walgreens & walked to the back by the pharmacy, & sat down on the bench, then back to the car. It wore him out, but at least he could do it. April 19, 1999: Greg got a unit of blood & went home in the afternoon. April 12-18, 1999: Greg received a five day combination of VP-16 and ifosfamide (chemo drugs). He didn't get nauseated until after the last dose of ifosfamide. Overall, he shows continued improvement. He started getting physical therapy to help improve his strength. Our focus now is on increased strength and improved nutrition in preparation for the bone marrow transplant he will have to have. April 11, 1999: Greg's temp has been 100-102 today, and he's developing a runny nose and watery eyes. They did a sinus x-ray, drew blood cultures, and started antibiotics. Greg has been using benadryl to help him sleep, but they gave him ativan tonight so the benadryl wouldn't dry up the mucous in his sinuses. He was oversedated with it, so we'll ask for something else tomorrow. April 10, 1999: Greg's eating well today. He's feeling better, smiling, and making jokes. Some clowns from a church group came through the hospital and stopped in to visit. They played guitar & drums, sang songs, and had puppets. I had to work last night and tonight, but I heard Greg tell them "Oh, It's okay. Nothing wakes her up". So, I had to lay there listening to the drum banging, pretending to be asleep. GRRRRR! Greg didn't feel well this evening, and developed a fever. I guess it's a good thing he didn't go home yesterday, because he would have had to be readmitted. Dr Z came today. April 9, 1999: Dr. K was ready to send Greg home today, but Greg begged to stay, not yet feeling up to leaving, so the doctor agreed to let him stay. His appetite is improved, but he's still not eating much. They turned the IV fluid off in the daytime to encourage drinking. He wore a mask & went to the activity room for 15 minutes. "Grover" from Sesame street came to his room to visit today. Aunt Bear went home today. April 8, 1999: Bone Marrow biopsy & aspiration done. Blood drawn & sent to Oklahoma City for DNA mapping. Greg's rash continues to improve, with no itching over most of his body, so they cancelled the skin biopsy and discontinued the dermatologist. He's not drinking much yet, but he's eating small bites, so they've changed his IV nutrition to nighttime only. He got two units of platelets today. After taking an afternoon nap, he stayed up most of the evening for visitors. Aunt Bear came by with Weird Al and Spice Girl CDs. Two of Greg's teachers came by, and two couples from church came by. April 7, 1999: Greg was in a better mood today, and he sang along with a Weird Al Yankovic CD and tapped his feet. He also watched a horror movie "I still know what you did last summer". His rash continues to improve. He's developing petechiae (pinpoint bruises) all over his calves & feet, so his platelets are probable getting low. The insurance company okayed getting DNA testing on Greg's blood for use in finding a matching donor. Greg got out of bed and walked around the room today. His appetite is coming back, and he ate 1/2 blueberry muffin and a McDonald's apple pie! Dr. Z came for homebound teaching. April 6, 1999: Greg's rash seems to be improving slightly. It's less pink in the lighter areas, and darker red in the reddened areas. He's not itching as much today. He only used his pain button twice, once for pain, and once for sleep, so they discontinued it. He's still getting benadryl every four hours. His port access needle was clogged, so they had to change it today. He complained of hunger (yeah!), and drank two sips of chocolate milk. His mouth sores are still hurting him though. He took a two hour nap today. At bedtime, they gave him some tylenol for a headache and generalized inflammation. Greg was in an irritable mood all day. April 5, 1999: Dr. Kirkpatrick is on for the rounds this month. The dermatologist finally made it in and ordered some steroid cream for Greg's rash. They also ordered some silvadene cream for the blisters that are starting to open up. They might do a biopsy on the 8th to determine the cause of the rash. The wound care specialists were also in to see Greg & make their recommendations. They put him on a flexiflow air bed with twice rinsed sheets. Dr. K is planning another bone marrow aspiration & lumbar puncture on the 8th. Greg didn't sleep too well last night, & he's itching like crazy. Aunt Bear came to visit and help out around the house for the week. Dr. Z came for homebound teaching. April 4, 1999 (Easter): Greg's rash is starting to blister, so they started putting gauze on them, soaked with saline. He's been getting benadryl every four hours for the itching, which is tremendous. They started him on IV nutrition, and hooked up a morphine pump with a button that he can push whenever he needs a dose. April 3, 1999: Greg's blood cultures show gram positive cocci in clusters, which means that it's either a staph or strep infection causing his fever. He was awake most of the night with frequent vital signs, IVs, & getting blood. He also had to get morphine three times. He slept through breakfast, but woke up at lunchtime. His mouth sores kept him from eating more than just a few bites, and he didn't eat his dinner at all. Mimi & Papa, and Aunt Courtney & Jess came to visit. Some friends from church brought Greg a personalized Bible. April 2, 1999: Greg couldn't sleep well last night because of complaints of a headache, intermittent chest & abdomen pain, and watery eyes. They gave him some benadryl for the itching and to help him sleep. They also gave him tylenol for a fever of 101. He was supposed to go home today, but now he won't be able to. His mouth sores are getting worse, and he couldn't eat his breakfast this morning. His hemoglobin was down to 7.5, so they gave him two units of blood. He got tylenol #4 for pain & fever, and they ordered morphine if he needs it. They started vancomycin & fortaz (antibiotics) while they wait for the blood cultures to show if he has an infection. His urine was negative for infection. His lower center is starting to become loose, also. His rash is worsening and now his whole body is involved, except for his face. They started hydrocortisone cream four times a day for that. Also, a dermatologist was requested to consult. They also started Greg on another antibiotic called claforan which is good for skin rashes & oral bacterias. He didn't have much of an appetite today, and skipped all three meals. He had to take zofran for his nausea. The American Red Cross is going to organize a bone marrow drive at church, and the Oklahoma Blood Institute is going to do a bone marrow drive at work. Greg's French teacher came and brought Greg a Luke Skywalker & Ewok, and a get well poster signed by the French class. April 1, 1999: Greg wanted to have a family dinner together, so Terry, Angela, & William came with Captain D's seafood. Greg's mouth sores are becoming, so he wasn't able to eat. His inner port-a-cath stitch has erupted through his skin, becoming reddened & inflamed, with maceration underneath the dressing. They cleaned it, and left it open to air so it could dry out. His rash is becoming a deeper red all over. He's becoming very fatigued this evening. March 31, 1999: Methotrexate finished today, Leukovorin & 6 MP (mercaptopurine) started. Greg is starting to get mouth sores today. We met Dr. Z, who is going to be Greg's homebound teacher. March 30, 1999: Greg's bone marrow shows 50-80% leukemia cells, so he hasn't gone into remission yet like they had hoped. They're going to give him Methotrexate IV for two days. He got the first dose today. They said that if he doesn't go into remission within another week or two, he will probably need to have a bone marrow transplant. We all had our blood drawn to see if we were matches. March 29, 1999: Went to ICU for bone marrow aspiration and biopsy, lumbar puncture, & spinal chemo. His hemoglobin was low at 5.8, so he was admitted to the pediatric floor to receive two units of blood. No fever. March 18, 1999: Greg came home from the hospital today. He has lost nearly 20 pounds this month. March 17, 1999 (St. Patrick's Day): Greg planted a shamrock with the activities director. March 16, 1999: Went to ICU for a bone marrow aspiration, lumbar puncture, and spinal chemo. March 14, 1999: Greg was admitted to the hospital with a temp of 100.8, generalized weakness, and muscle & joint aches. |
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Sign my guest book! www dot gregsleukemiajournal dot com
forward- slash guest dot htm Richard Simpson is Greg's bone marrow donor Assistance with the web pages was provided by
George Kasica, The Celestis Foundation is seeking your support to offset some of the costs of fulfilling Greg Brown's dream of space flight. Contributions of any amount will help the Foundation to continue the Honorary Commemorative Spaceflight program on the next Celestis launch. Your contribution is not tax deductible, but is greatly appreciated. Please send your contributions to: The Greg Brown Fund All contributions is excess of actual launch related expenses will be donated to the National Marrow Donor Program.
Jill E. McGovern, PH.D. Send us E-Mail! gregb at netwrx1.net Last Updated: 02/11/2009 19:01 |
