August 3, 1999: Continued on BMT page. July 31, 1999: Dr. K just called. He said that last Monday's spinal fluid showed some cells that were possibly leukemia cells that had spread to the spinal column. He said that everyone has some cells in their spinal fluid, at times, such as when they have mono or some other illness, and that Greg had had some cells in the past, but this time, they looked like they might be leukemia cells. He showed them to the pathologist, and he thought so too, but when they stained them and looked at them again, they didn't resemble leukemia cells as much, so they weren't really sure. He notified the doctors in Oklahoma City, and asked them to do another spinal tap on Monday while he's getting his Hickman catheter. They're going to do some additional testing on the fluid to see what's going on. If it spreads to the spinal column, patients typically have a poorer outcome. Dr. K said that if Greg's spinal column turns out to be involved, then it shows just how aggressive his leukemia is, making the bone marrow transplant all the more urgent. Sometimes, leukemia cells can still hide in the spinal column or testicles and escape the onslaught of the radiation, chemo, and the white cells of the transplanted marrow (if the match is too perfect), and cause a relapse down the road. We asked Greg what he thought about all this, and he said "There's not really anything I can say. Either it's there or it's not". Dr. K said that if it turns out to be leukemia cells, they would probably modify the radiation and/or chemo in preparation for his transplant. July 30, 1999: This has been a stressful week! The last few days have been filled with numerous calls back & forth between myself, DHS, the HMO, & the dental insurance, feuding about the dental, O.R., & anesthesia coverage. We were still at it while in the waiting room for Greg's dental surgery yesterday, and it wasn't until after he finally went in that I realized that I hadn't even had a decent opportunity to tell him I loved him and wish him well. The lady from admissions (who didn't even identify herself or have a nametag on) told me that the O.R. bill was estimated at $2,500, and asked me if I had brought half up front (not to be confused with the dental bill estimated at $3,500 that the dentists also wanted half up front). When I explained the circumstances, she said that until we get an approval from someone agreeing to pay, that I needed to sign a commitment for monthly payments. Then, she came into the waiting room 4 or 5 or 6 times asking me if I'd gotten approval yet, was I sure I couldn't make a payment today, etc...This went on for three hours, until they took Greg to surgery. Then, I went to another waiting room where I could finally bring my coffee in, and left me completely alone in a solitary room for six and a half hours until Greg was out & in the recovery room. He was nauseated when he woke up, and as the recovery room nurses were nearing quitting time, they sent him over to be admitted to a semi-private room until he could hold water down for at least an hour. We finally left at 9:30 pm, and wound up staying another night in Oklahoma City. Greg hadn't eaten since midnight, & I hadn't eaten since noon, so we were famished. He felt pretty good today except for some fullness in his right ear that he woke up from surgery with, and it made him feel "like I'm in an elevator going up and down", but he tolerated the drive home just fine. They had told him to leave his leg braces on when he went to surgery, and even without shoes, his feet sweated in them so much, that when he came out, his socks were soaking wet, he had a new red mark on the back of his leg, and his feet had three blisters each, so he couldn't wear them today. His knees are still bruised from falling several days ago. Anyway, he's feeling pretty good otherwise, it's good to be home, it's hotter than blazes outside, I've had a terrible headache today, and it was nearing noon before I even realized it was my birthday, when my friend Donna reminded me. July 27, 1999 (later): The HMO denied coverage for the surgery room & anesthesia during Thursday's dental work. Also, the dentist's office called and wants half up front, and they're estimating the bill to be around $3,500! When I told her I didn't have it, she asked me if I could borrow it, as the balance is due in 90 days. Dear Lord in Heaven, will you please tell me when I'm having enough stress, because I'm too stressed to tell. July 27, 1999: Did all of his tests today, but of course they don't tell you anything until a doctor interprets them, but I'm sure everything looked good. They rescheduled his Hickman catheter placement for Monday, instead of this Friday, so I changed his radiology appointment (to check lung shield size & placement) to Monday also, to save us a trip. Mimi & Papa are coming to visit tomorrow! July 26, 1999: Greg felt nauseated Saturday night & Sunday morning, but was feeling better by Sunday afternoon. He tripped where the carpet changes to tile going into the kitchen, and bruised up his knees pretty badly. We went to St. Francis this morning and had a bone marrow aspiration, bone marrow biopsy, and lumbar puncture done to check for relapse. No results yet. They also drew blood for pre-transplant work-up, and his CBC looked good. Whites were 3.5, Hemoglobin was 11.5, and platelets were 150. The dentist in Oklahoma City wanted a complete physical by his primary care physician (whom we haven't seen since diagnosis) before they'll do the anesthesia, so we had to go see him today to get that done. As we were getting ready to go, the dept of health (which oversees HMO's) called regarding my complaint of the HMO not wanting to pay for the dental work, & associated anesthesia, or surgery room. I had told them that the dental office had said that it was state law that they had to pay for the surgery room & anesthesia, and that the doctors had said the transplant could not proceed until it was done, as the risks of infection made the dental work a medically necessary part of the pre-transplant procedures. The dept of health had contacted the HMO, and told me to call the HMO rep (who was waiting for my call). The HMO rep told me that if the dentist office and the oncologists would fax all of Greg's records with letters stating why he needed the dental work done, she would submit it to her director for review, and try to get an answer back regarding approval or denial within the next 24-48 hours. So, I had 30 minutes to reach the dental office and two oncology offices during their lunch hour to explain what we needed, and try to make it to the physical by 1:00. Needless to say, we were late, but the doctor's office didn't mind. Tomorrow is the Pulmonary function test, EKG, echocardiogram, and chest x-ray. Wednesday is the final adjustment on his braces. Thursday is when he gets his dental work done. Friday, he gets his Hickman catheter placed. He'll be admitted next Monday to start chemo & radiation, and the transplant is on August 10th. July 24, 1999: Greg's still feeling pretty good. He's gained back some of the weight he lost in the early stages of chemo, so I'm glad he's got that to draw from during the transplant. I've spent the last couple of days taking care of loose ends and choreographing next weeks schedule. He has nine places to go and 13 tests & procedures, so we'll be plenty busy. July 21, 1999: Greg had his braces adjusted today. Also, I took the van to the insurance adjusters to survey the damage. I don't really know if what they offered is okay, because I haven't driven it since the wreck, and I haven't had time to get outside appraisals yet. July 20, 1999 (later): Rejoice with us! Gregory was baptized tonight! July 20, 1999: Received word that Greg will be admitted on August 2nd for the transplant to occur on the 10th. That will be his "re-birthday"! He will have to go down there before then for his dental surgery, and for surgery to place a central IV line called a Hickman catheter. He will also have to have some baseline heart and lung tests done here in town, as well as additional blood work. We've got a busy week ahead! July 19, 1999: Went to Oklahoma City today to get his foam forms made for the radiation treatments. They mixed a couple of chemicals together, poured them into a black plastic garbage bag, & sealed the bag shut. He laid down on the bag, and the chemicals turned into foam, hardening in about ten minutes. After making one for the front and one for the back, they took a bunch of measurements that will help them give precise doses of radiation to various areas of his body. We found another cafeteria that was more like the hospital cafeteria we were used to, and had lunch (with no flies this time!). Afterwards, we had a howdy visit with the dental school. They looked at the x-rays we brought with us, and examined Greg. They think it'll take four or five hours in surgery to do all his fillings. They'll have to call us with a date, after they check with the oncologists. July 18, 1999: Went to church today, but had to leave early as his feet were killing him with blisters from his new braces. He couldn't wait to get home to take them and his shoes off. We'll get them adjusted later this week. July 15, 1999: Greg and I went to Oklahoma City to have a "howdy visit" with the Dr. Nordhues, who will be doing his radiation treatments, and Dr. Selby, who will be doing the transplant. The radiology department will have Greg come in to make some supports that will hold him still during the radiation treatments. They will take a plastic sheet, lay him on it, and fill it with foam, which will set up and harden. Then, they'll flip him on his stomach, and make another one, (protecting his face, so he can breathe). After that, they'll velcro these to the wall, and he'll stand up against them during the actual radiation treatments, which will be twice a day for four or five days immediately prior to transplant. When he goes in to have the supports made, they'll also measure his lung & chest size so they'll know which lead shields to use for protection from lung scarring by the radiation. Dr. Nordhues discussed the side effects of radiation which include hair loss (certain), neurocognitive effects (possible), cataract formation (possible in the following years), salivary gland swelling (immediate & short lived), thyroid dysfunction & hormonal imbalances (probable, following transplant), mouth sores, nausea/vomiting, diarrhea, G.I. tract sores (certain, during & following radiation), pnuemonia (possible), liver swelling & scarring similar to cirrhosis (possible), and sterility (certain). After that, we went to the cafeteria, which was more like a tiny snack bar with a grill, and only 8 or 10 small tables, with flies buzzing around. It was way too small for such a large hospital, and the counter area was packed like sardines with staff & visitors trying to get some lunch. On to visit with Dr. Selby, where we had another hour before his appointment, and then they were over an hour late before seeing us. He told Greg everything he told me back in April, so we really didn't have any new questions. He confirmed that the donor's physical exam went well, and that everything was set at that end. He took us on a tour of the BMT isolation unit where Greg will be staying at University Hospital (across the street). The rooms are really tiny, with just barely enough room for a bed, end table, and recliner. He told me that I could visit anytime, but that they didn't want me to "move in" with Greg. Since I've stayed with him through all of his previous hospitalizations, I don't know how I could possibly leave him alone in a foreign town, not knowing anyone, during the toughest time of his life. They told me that I could stay down the street at the Ronald McDonald House, but I think they'll have to peel me out of Greg's room. We did, however, go to visit the Ronald McDonald House. They didn't have any vacant rooms to show us, but we got to look around the rest of it. They provide three meals a day that you cook yourself from government commodities. ( I don't like to cook, even under the best of circumstances). They have pay phones in the lobby, but none in the rooms. Greg was concerned about having internet access so we can keep this webpage going, and so we can e-mail people. It was nearly 6:00 by the time we left, and having had only 1 1/2 hours sleep the night before, we were getting plenty tired. Fortunately, the angels guided us home safely, where we collapsed from exhaustion. The temperature was 90-95, and Greg wasn't tolerating the heat too well. Also, his new leg braces are causing nuMerous blisters to form on his feet, and he had to leave them in the car when wegot to Oklahoma City. The heat inside the car was unbearable, and I hope the braces didn't warp. We'll have to get them checked when they have him in for adjustment. Terry picked up the accident report, which showed no fault on my part. The other driver was ticketed for failure to stop at a red light. She reported to the police that she was on auto-pilot. While in Oklahoma City, a pedestrian stepped out in front of us from behind another vehicle, and I had to slam on my brakes to avoid hitting her by an inch. She turned and gave me a look as if she couldn't believe I had gone through the intersection with a green light in my favor. As you can imagine, I'm feeling pretty uncomfortable around green lights today. Both times, the lights were green for at least a block before I arrived at the intersections. July 14, 1999 (evening): Greg and I got in a wreck tonight, but nobody got hurt. As we were going to the store, we were westbound in the inside lane, and a lady was going southbound in her outside lane. As I entered the intersection with a green light, she was approaching the intersection, having a red light, and just kept on coming. As she crossed in front of us, I braked and turned to avoid her, but there wasn't enough time or distance to miss hitting her. My van (which had just had the front brakes & tie-rods replaced), hit her rear bumper. She stated that she thought she had a green light. Fortunately, a witness stopped and verified that I had the green light, and he stayed on the scene to relay that information to the police. After the policewoman got my information, she let Greg & me go without a ticket, so I'm sure the other woman got a ticket. All I could think at the time was what a lousy time it was to have a vehicle tied up in the repair shop. The front end of the van's smashed up, but it started up and got us home. I'll have to wait till daylight to see exactly what all damage there is. Praise the Lord that nobody was injured, and that there was a witness who was willing to get involved! July 14, 1999: Lots of stuff happening all at once the past couple of days. After many phone calls back & forth between the dentist, the two doctors, and myself, we've got a game plan happening. Over the next two weeks, Greg's going to Oklahoma City's four times. The dental school students will take him to the hospital to put him under general anesthesia, to get the rest of his dental work done all at once. He's also getting measured head to toe on the total body irradiation machine, then on to Cat Scan for lung and chest measurements, so they can construct protective shields. Then, he'll check in for admission, to start the six days of chemo and radiation, followed by the bone marrow transplant. The transplant date is tentatively set for August 6th or 9th, depending on how soon they can get him scheduled into the O.R. for the dental work. I guess that means the donor's physical exam went alright! We're holding off on giving him any more chemo for now. He got his ankle braces today, and he can really tell a difference in his stability. He spent the night with his friend Joey last night, and had a good time. July 12 1999: I spent all morning on the phone trying to find a dentist who could/would see Greg. I couldn't find anyone in our dental plan, so I called a couple of others that we'd used in the past. Still no luck on such short notice. Finally, I called the dentist referred by one of Greg's nurses at the clinic, and we were able to get him in at 3:00 for his cleaning. He did fine with just nitrous oxide gas and music via headphones. (Greg noticed a problem with the headphones and informed the dentist which wires needed to be soldered in order to work properly). The dentist told us that Greg has too many cavities to fix in a week, but that if Dr. Kirkpatrick (Tulsa) or Dr. Selby (Oklahoma City) felt like they all had to be done prior to transplant, he'd cancel all his other patients' appointments to do it if necessary. Otherwise, if Greg could get away with having the three worst ones fixed, then he'd find a way to fit him in to get them done this week. Isn't God great to send us to someone so understanding! While we were at the dentist's, Dr. Selby's nurse called & left a message that they want Greg to come to Oklahoma City to meet Dr. Selby before the transplant, so they could go over things. They were closed by the time we got back, so I'll have to call them in the morning. In the meantime, Greg's itchy hands peeled over the weekend, and they're healing up now with no more redness. Otherwise, he's been feeling pretty good, with just some occasional cramping type of pain in his abdominal & chest muscles. He finished taking the oral chemo, 6-MP. Yesterday, hid friend Samil came over for about an hour, and gave him the new "Weird Al" CD titled "Running With Scissors", so Greg's been walking around the house with headphones on, and a quirky smile on his face, occasionally belting out the words. July 9, 1999 (later today): Unfortunately, things didn't go too well at the dentist's office today. After premedicating with 10 mg valium, and giving him "the gas mask" at the office, Greg hollered out when the dentist tried to put his hands in Greg's mouth, and the dentist gave up. He handed Terry (my husband) all of Greg's x-rays and suggested we find a doctor that uses IV sedation. Unfortunately, the list of dentists on our insurance plan is short, and we aren't able to find anyone on this short of notice who will take on a pre-transplant patient who has a strong dental aversion and is on a tight time schedule. Greg said later "I told him to go ahead, but I guess he didn't hear me". Also, the backs of Greg's hands have been itching the past couple of days, and today they're getting red from all the scratching. We had him put some antibiotic ointment on them. July 9, 1999: Yesterday we got word that Greg's potential donor goes for his physical exam on Monday. We should hear word of the results about a week later, and if everything still looks like it's a go, then we'll be off to transplant, depending on when the donor can schedule time to do it. The dentist called yesterday, and they're able to get him in today to finish up the rest of his dental work, so he's going there this morning. That will free him up to resume chemo. I learned the other day that a leukemia cell (tested in mice) can divide every 12 hours, so that there can be as many as 3 trillion cells in 14 days, assuming they all live to divide. Needless to say, I'm hoping they resume the chemo quickly. Dr. Kirkpatrick, Dr. Fisher, and Dr. Hum (St. Francis) will discuss his treatment plan this afternoon, and let us know. Actually, he is still taking one type of chemo, but he's not taking all the others that he would have been getting on this particular protocol, as we've had to lay off them while we waited for the dental work. His ankle braces should be ready today or Monday. He's been having some brief episodes of headaches & muscle pain, but for the most part, he's been feeling pretty good the past few days. July 6, 1999: This morning, we went to have Greg fitted for hinged ankle-foot braces. They put stocking material on his legs, then wrapped them in fiberglass cast material. After a few minutes of heat, the fiberglass hardened, and they sawed it off. They will use these casts to make a pair of hard plastic braces that hinge at the ankle. These will fit into his shoe, and allow him to pull his foot upwards, but not allow him to point his toes downwards. This should give him more stability when he's walking. Afterwards, we went to the chemo clinic at St. Francis Hospital to have some more lab work drawn. As expected, his counts are going down after last week's doses of chemo, but he didn't need any transfusions. Dr. Kirkpatrick hasn't been able to talk with Nancy today, (she's the bone marrow transplant coordinator at Children's Hospital in Oklahoma City), so we are still up in the air about what to do next. Without knowing a more definite transplant date, we don't know if it's okay to just wait until July 21st to finish the dental work, or if we should resume outpatient chemo, or what. Hopefully, we'll know something soon. If we wait too long before resuming chemo, he could relapse. I ran across several web sites last night that had stories of the experiences of some other cancer patients and bone marrow transplant recipients. If I can learn some more about building web pages, I may try to incorporate some links to some of these sites. First things first, however. It seems like I have a million things to do still before we go. July 4, 1999: Went to church today! First time to be unhospitalized & well enough to go out in a crowd since diagnosis. Temperature 100.0 when we got home, but back to normal within an hour. Don't know if it was the excitement, the heat, or something else, but we were glad it stayed down. Fell down & scraped his knee. Still putting feet down "toe to heel", so his balance is a little off. He's getting fitted for ankle/foot braces later this week, and that should help his balance, as well as help to prevent further foot-drop while bedridden during the transplant. Had a headache all day and didn't feel up to going to see the fireworks. Our friends were nice enough to save some of Greg's pictures to disk for him, so now we can put some more of them on the web page. July 2, 1999: Hollered a lot at the dentist's during the drilling, delaying the work. The dentist finally resorted to a temporary filling. Afterwards, the dentist commented that he could have used nitrous oxide... Anyway, the first one's done (partially), and he can't get back in until the 21st for the rest of the dental work, so we'll have to see if we can get him in sooner, as he may be gone to transplant by then. In the meantime, the chemo's on hold (I think) until then. We'll have to clarify it after the holiday weekend. Greg's feeling fine otherwise, with no fevers, headaches, nausea, or other things. He's been staying indoors playing with legos, listening to Weird Al, and playing video games. July 1, 1999: Went to clinic for lab work. Okay to precede with dental filling tomorrow. Feeling good today. |
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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 |