Bone Marrow Transplant

August 29, 1999 (6:00 pm): Greg sure is anxious to get out of here tomorrow! He's been walking like crazy around the nurse's desk, brushing his teeth, drinking fluids, and eating without being reminded. He said "Well, I don't want to have to go through all this again". We got most everything packed up & I took it to Jones today, where we'll be staying. He's put on 20 pounds of fluid in the past four weeks since admission. The only things that aren't swollen are his face & arms. His belly looks enormous on him, and he can't fit into his shoes or leg braces, so he'll have to wear his sandles home. His (kidney function) BUN is down to 35 today, and his creatinine remains 1.6. They increased his lasix today to every 6 hours, but he still isn't urinating enough to get rid of the excess fluids. His skin has been pretty dry, but today it's flaky, and he's pink all over. Is this the start of a GVH (Graft Vs. Host) rash? He hates lotions & creams, however, he said he'd use some "but not right now, Mom". There's been no change in his pain, so they turned the fentanyl drip down some more, and stopped the push button doses. He got another 6-pack of platelets and 2 units of blood this morning. His white blood cells were 6.6 today. They're not dropping too rapidly after stopping the neupogen shots, so everything's still a go for discharge tomorrow.

August 28, 1999 (7:30 pm): Greg's been feeling pretty good today. He's been up twice today walking laps around the nurse's station, 4 laps, then 10 laps! He's trying to do everything he can to work towards being discharged on Monday. He's been doing his mouth care, eating little bits, and drinking fluids without being reminded. When he heard that he might get to go home next week, I mentioned that I might start packing up some stuff, and he had asked me to leave his stuff alone. However, when they gave him an actual date, not only did he want some of his stuff packed, he got up and started doing it. His legs hurt if he's standing still, but he says they're not too bad if he's walking. They're going to take him off the fentanyl (pain) drip tomorrow. They're continuing to back down on his IV fluid rates and one by one they're replacing his IV meds with pills. His feet & ankle swelling has increased to include his calves. His (kidney function) BUN increased to 40 (it was 5 to 10 at admission). and his creatinine is 1.6 (0.4 to 0.7 at admission), so they're looking a little worse today. His white blood cell dropped to 9.5, but we expect that, since they're not giving the neupogen shots. His hemoglobin is down to 9.2, so he may need blood in the morning if his midnight labs are less than 9.0. His platelets are 18, so he'll probably need another 6-pack of those as well, if they're below 15. He had lots of visitors today, including Dad & brother William, who just started Driver's Ed (that's a scary thought)! Sure was good to see them both!

August 27, 1999 (2:00 pm): Dr Selby said that Greg doesn't have to have any more neupogen shots! His whites will start to drop now that they're not going to give them, but that if they don't go below 3 or 4, then he won't have to get anymore of them. They took him off the dopamine drip this morning, and want him to drink two liters today to see how his kidneys behave. They also cut back on his IV fluid rate. His blood pressure remains up because of the cyclosporin, so they started him on procardia, which he will have to take at home for awhile. He's getting out of the room to go to the shower room for three days now. He just finished making a lap around the unit, and he got a little wore out, but mostly, his legs were hurting. They're going to increase his dose of neurontin for that. He's feeling kind of tired today, but his spirits are good, and he's REALLY excited that he might get to leave the hospital as early as Monday! We're going to be staying with a friend, and she's getting the house cleaned & ready for him. We're all really excited about this! He'll still have to make frequent clinic visits for lab, IV infusions, & to get platelets & blood, and he may need to be readmitted, but for a little while at least, he can see some sunshine, play with George (our pomeranian), and go to sleep whenever he wants, wake up whenever he wants, and not be interrupted in between. If everything goes well, we should be able to return home to Tulsa in a month or two! I wanted to shout out something to everyone a couple of days ago, but I had to make sure it was okay before I told you. Greg got the coolest package in the mail the other day! Congressman Young and his wife forwarded a package from the Navy VR-1 squadron "Star Lifters" crew that flew Greg's bone marrow to him. The sent a VR-1 T-shirt, hat, & photo of their jet! They also sent a letter making him an honorary member of the squadron! Isn't that awsome?

August 25, 1999 (6:30 pm): I would like to change gears today, and start off with a few apologies. First, I would like to apologize to those who felt uncomfortable having their pictures on the webpage. I was so proud of the GREAT team that have been a part of Greg's journey and Greg's care, that I wanted everyone to know who these wonderful persons were, and I never meant to make anybody uncomfortable, so I beg your forgiveness, and have deleted most of the photos, in the event others felt the same and were too uncomfortable to say so. Secondly, I would like to apologize to the Navy for giving the Air Force credit for bringing Greg his new bone marrow. In my excitement of the day, I mixed things up. The VR-1 "Star Lifters" squadron of the U.S.Navy landed at Tinker Air Force base when they came. We truly appreciate your part in this journey, and wish you all many happy flights and safe landings. I have made appropriate corrections in the 10 August entry.

Greg continues to improve today. His white cell count was up to 2.8, so he finally got to leave his room to go to the shower room. If you've never had a bedbath, believe me, they are cold, cold, cold, no matter how warm the water is. He hasn't eaten today, but he hasn't had any nausea either. This morning, he said he didn't feel very good, but he couldn't give me anything specific that was bothering him, just that he didn't feel good. He got up in a chair later and played with legos, building an airplane (Navy jet?). He got six more units of platelets today for a platelet count of <11. Hemoglobin was up to 10.7. His bilirubin (liver function) was back to normal at 1.2! His Bun & creatinine (kidney function) were nudging down at 19 & 1.4, so he's headed back in the right direction! He remains on the dopamine drip to help his kidneys. They are changing his cyclosporin from IV to pills, preparing him for discharge. Even though his white cells are coming back, they will take two or three weeks to mature, so he's still susceptible to infections, but the rapid pace of the production of white cells shows that his marrow is engrafting well. They're still looking towards possible discharge next week if all continues to improve. As his white cells increase & mature, we're watching for signs of acute Graft vs. Host disease (GVHD), which could happen suddenly during the first 100 days. His temp remains normal, and blood cultures drawn every two days remain negative, so they stopped his last antibiotic. His legs still hurt, but not as severely as before.

August 24, 1999 (8:00 pm): What a great day this has been! Greg hasn't been nauseated, and he sat up for over four hours. He had several visitors, and finally got to take a nap around 6:00 tonight. He's still sleeping, but he's had a big day. The youth minister from home came to visit, and brought some neat things from the youth group. He got a video camera for the computer, a set of star wars figures with voice chip cards, and a Weird Al CD. He was in hog heaven! A member of the church here in Ok City brought him some new pajamas, so now I don't have to wash laundry so often! He's still not urinating enough, and the 20 mg of lasix that used to make him produce 2 liters, only produced 1/2 liter today, but at least his kidneys haven't shut down completely. If I can figure it out, I can use the video camera to post daily pictures. I couldn't finish posting the ones I wanted to, because it said I had filled up the space allotted, so I took off the big versions, and left the thumbnails. Gotta go! I have a new toy to play with...I mean, Greg has a new toy that I need to learn about so I can show him how to use it! He-he!

August 24, 1999 (11:00 am): Greg bought another 6-pack of platelets this morning, but who cares, because his white cell count is up to 1.5! They only check bilirubin (liver function) every other day, so nothing new on that. He just had his first day with no vomiting, and this morning, he ate two bites of cinnamon applesauce, and it actually tasted like cinnamon! Dr. Selby said if everything continues to go well, Greg might get to leave as soon as next week! Whoo-hoo!

August 23, 1999 (2:00 pm): Today's lab was another mixed bag. Greg's white blood cell count is up to 0.9! That means his new marrow is starting to produce cells! The downside is that his bilirubin's doubled from 1.01 to 2.2. That means that his liver's taking a hit, but we're not sure if it's GVHD (graft vs host disease) or something else. It's really too soon to tell, and the doctor says that about half the patients have a rise in bilirubin, but for some, it just goes back down and they never know why it went up. His kidney function is about the same, with his bun staying at 17, and his creatinine nudging up to 1.7. He's still on the dopamine drip at 2 mcg/kg/min to help his kidneys produce urine. Last night, he asked for his sleeping pill at 9:00, and they told him he'd have to wait till 10:00. However at 9:30, they brought him lasix to make him urinate. I asked the doctor about that this morning, and he said they would give it to him earlier in the day next time. He's also going to increase Greg's dose of fentanyl for pain relief in his legs. No nausea so far today, but we have a few hours to go still. He still has no appetite. For feeling so miserable, he sure does smile a lot.

August 22, 1999 (11:30 pm): Day +12 was a mixed bag. First the good news. Greg hasn't had a fever for two days, so they took him off all the antibiotics. The not so good news is that his kidneys are trying to shut down, and they had to start him on a dopamine drip to help keep them working. His urine output still was low with that, so they had to give him some lasix tonight. His tremors are nearly gone, with only brief slight hand tremors once or twice today. He tried to eat a couple of bites at lunch, but the nausea remains stronger than the hunger. His mouth sores are healed up, and he's been doing really good with his mouth care. His leg pain was pretty bad today, and when he knelt down to get his IV tubing out from under the wheels of the pole, his legs gave out, and he just kept going down. He wasn't injured, but he was frustrated with the pain & weakness. Later this evening, he attempted the exercycle, but was unable to turn the pedals even once due to the pain. The bike was sitting at the foot of the bed, and he just crawled from the bike over the foot of the bed to get back in, saying his legs hurt too badly to walk around the bed. He still wants to sleep through this ordeal, so the doctor wrote orders that he has to have his light on for three hours, twice a day. Now, the little vampire's learning to sleep with the lights on (or at least play possum). It's hard to make him get up when his legs hurt so bad that he cries with pain even to dangle them off the side of the bed. He got a 6-pack of platelets and 2 units of blood this morning. Hemoglobin was 8.6, WBC remains <0.4, platelets were 12. His BUN was down to 17, & creatinine nudged up to 1.6. Couldn't get the photos on the site yet, but I'm working on it.

August 21, 1999 (11:30 pm): Today was much better! Dr. Selby said that since Greg didn't have a fever (yeah!), that he wouldn't restart the ampho-B unless his temp went up again. His bun & creatinine nudged up slightly to 20 and 1.5. Greg's urine output has dropped off somewhat with the kidney involvement, and his intake is 2 1/2 liters ahead of his output, so they gave him lasix (water pill). The fentanyl drip isn't completely removing his leg pain, but it is more tolerable, and they gave him some lortab which helped. He got a teeny tiny nosebleed when he blew his nose (he forgot it was a no-no), and since his platelets were only 17, they went ahead and gave him another 6-pack of platelets. His nausea was better today. He still has distorted taste, and no appetite, so he didn't eat anything today. He was in a good mood this morning, and even read his own e-mail, rather than having me read it to him. I spent about eight hours last night and today, scanning all his photos into the computer, and I learned that it eats up all your hard drive. The computer froze up, and I had to delete some things to free things up. Tomorrow, I'll try to get some of the photos cropped & added to the website.

August 21, 1999 (1:30 am): What an interesting day that day +10 was. Terry came to spend the day with us! Greg's been looking forward to Daddy's visit all week, and he sure was glad to see him! He brought back the pictures we took in radiology & here in the unit, so we'll try to get some of them posted over the weekend. The morning started with a 6-pack of platelets for a lab count of 11. Hemoglobin was 10, whites were still <0.4. His bun & creatinine (indicates kidney function) were 19 & 1.4, so Dr. Selby stopped his ampho-B & said that after skipping today, they'd restart him on a lipid based amphotericin tomorrow that's less toxic to the kidneys. It's called abelcet. Greg's leg pain was still severe, and his arms started hurting as well, so Dr. Selby started him on a morphine drip. It worked too good, and only 5 or 6 hours later, he was itching all over & his eyes were so glazed you could dunk doughnuts in them. He also became extremely emotional, alternating crying with laughing, fear, and anger, all the while stating he didn't know why. Realizing that he had a low tolerance for morphine, the drip was stopped & after allowing most of it to clear his system, a fentanyl drip was started. He can still have demerol for tremors if he needs it. The morphine caused him to have difficulty urinating, and after trying for four hours, they were prepared to give him a foley catheter, but when they got ready to give him one, he was finally able to go, and barely avoided getting it. They started neupogen shots today to stimulate white blood cell production. When he heard that he was going to be getting it, he hollered "You're not giving me any shots. I don't want shots. You can give it IV". Need I tell you the reaction he had when he actually got the shot? Emla cream might have deadened the skin, but it didn't deaden my ears, as he learned that the medicine burns. He'll have to get it once a day until the white count is high enough. As a routine protocol for pediatric bone marrow patients, a child psychologist started coming out to see Greg. Also, they started him on an antidepressant, but the actual reason for it wasn't depression, but for it's secondary uses, as it helps headaches, neuropathy (pain due to nerve damage), and insomnia. They've already drawn today's labs & the results aren't posted on the door yet, but the nurse just now told me he wouldn't be needing any blood or platelets today. His tremors are only slightly obvious today. Nausea remains about the same. He was finally hungry this morning, but he only ate one bite of apple-cinnamon oatmeal, saying it had no taste. His mouth sores are healed up, but he still complains of a sore throat. It's now 2:00 am. Good-night!

August 19, 1999 (midnight): Greg's highest temp today (day +9) was 102! Still having nausea & tremors, but they seem to be lessened in incidence & severity. His biggest complaint today was severe pain, 9 on a scale of 10, in his lower legs. He described it as "like my bones are emptied out, and there's nothing inside to support me when I walk". Demerol given for tremors helped some, but no additional pain meds were added, although they talked about putting him on a morphine drip. His legs turn purple when he dangles them off the bed or stands up today, and return to normal within five minutes of laying down again. He hurt too bad for physical therapy today. The nurse noticed that his urine output has decreased today. His bun & creatinine, which indicate kidney function, doubled today, indicating that his kidneys are working harder, but as his levels were always below the normal range (meaning super excellent function), they are now into the normal range. I was upset about the amphotericin-B causing this, but the Dr. assured me that they were watching his lab, and would lower his dose or change his meds if needed. He also told me that for Greg, they would lower the threshhold they normally use for lab limits, and change meds earlier than they normally would, if he started showing signs of trouble. He also said that the ampho-B doesn't change lab levels for at least a week, and that the cyclosporin (which was increased yesterday), and/or the vancomycin can also tax the kidneys. His other meds also add their own burdens to kidney & liver function. Additionally, he said that they'll stop the ampho-B when his blood counts start to rise, and didn't say anything about using Greg's temperature as a guide. Dr. Selby, Greg's admitting doctor, takes over hospital rounds tomorrow, for the next month. Greg's mouth sores are improving, but he hasn't eaten for a couple of days due to nausea, especially with food odors. He's done better with mouth care, and I think it's making a difference. His rash looks slightly lessened tonight, and he's not itching as much. I snuck some lotion onto his arms & legs after his bath, & he got mad at me, but I didn't see him scratching anymore, and he didn't ask for any meds for itching. I forgot to mention yesterday that he'd gotten 6 more units of platelets in the morning. Today's platelet level was 15, hemoglobin 9.4, and whites were <0.4. Looks like he will probably need to get more blood and platelets in the morning. Today was cranky day, and he was easily annoyed, but he always apologized for being grumpy. When he's cranky, it usually means that he's in the transition between feeling good & bad, and since he's felt so bad the past few days, maybe that means tomorrow will be a great day. We talked to William today, and he had a good birthday.

August 18, 1999 (10:00 pm): Greg's temperature was much better at 100-104 today, mostly hanging around 101-102, without a cooling blanket or ice. They gave him a trial dose of amphotericin-B this afternoon with no problems, and tonight, they' gave a half-dose. They'll follow that with a full dose each night until he has no fever for 48 hours. I don't like the idea of ampho-b, because of it's harshness on kidneys, but they feel it's best in this situation, so at least they're dosing it based on his weight, and not some generic dose. They'll also premedicate with benadryl, solumedrol, and tylenol. I learned that ampho-B can cause a fever, so I'm wondering how they'll be able to stop giving it if his temp has to be normal, unless that means normal with tylenol on board. He only had tremors once today, after the dose of ampho-B, and it can cause them, but as he's been doing that all week, it's hard to say why he had them tonight. Demerol stops/minimizes them, but I'm not sure how it works. He was hot at the time, but a few minutes later he was cold, and I've noticed that several times he's been hot, developed tremors, and then chilled afterwards. His hemoglobin was 7.8 last night, so he got 2 units of packed red cells today. His platelets were 15, so it'll most likely be down & he'll get some more in the morning. White cells remain <0.4. He's had some diarrhea today, and immodium worked for that. He only got nauseated once! Yeah! He's still not eating, and today he tried, but he said he couldn't taste anything. At least the mouth rinses didn't taste yucky! Overall, he felt better today, and even though he wanted to sleep all day, he seemed to be a little more alert when he was awake, and have a little more strength. Yesterday, Physical Therapy did his foot stretches for him in bed, but today, he got up on his exercycle and did fine. He's still pink all over from whatever caused that fine rash, (meds? radiation? chemo?), but with his temp down, his color is better. He's still itching quite a bit, and they've been alternating benadryl, ativan, and compazine for the itching, as well as for the nausea. We got some lotion tonight, but he doesn't like lotion, and didn't want any tonight, so after his bath tomorrow morning, I'll try to get some on him. I don't want him sleeping all the time, or he'll get pneumonia, and the drugs make him tired. He said he'd try to get through the itching without all the meds, now that he's on the ampho-B, to minimize the work of his kidneys & liver. Tomorrow's William's 16th birthday (Greg's brother, and my oldest son). I wish we didn't have to be away for his birthday, but life goes on outside the hospital, and so does time. I've stayed with Greg through all ten of his hospitalizations this year, and at times, it feels like Terry, Angela, and William have become a separate family from me and Greg. This time especially feels that way, as we're 100 miles from home, and we're going to be here for three months instead of a week or two. Angela & William started school last week, & it feels strange to not be there for that. Talking on the phone just isn't the same, but it helps.

August 17, 1999 (midnight): Temp 103-107.6 today, down to 104.3 with Tylenol & a cooling blanket tonight. They'll probably have to start amphotericin B tomorrow, which is a very strong antibiotic that is extremely hard on kidneys. Working in ICU, I've seen a couple of patients in the past year or two that developed acute renal failure from it, so I'm not real comfortable with it. Needless to say, Greg feels crummy, and didn't eat a thing today. He's still drinking water & juice, and his mouth sores aren't getting any worse. Nausea continues today. His hair looks like it's finally trying to come out. It had grown to around 1/2 inch. Tremors continued today, and his muscles are real sore from that. He's tried to stop them, and the drugs help a little, but no total relief yet. This morning, his WBC's remained bottomed out at <0.4, and his platelets were also bottomed out at <11, so he got 6 units of platelets. His hemoglobin was 9.1, so he'll probably get blood next time, as it will likely be less than 9.0, which is their guideline level.

August 16, 1999 (10:00 pm): Temp up to 104.7 this afternoon. We put cold washcloths on his head & ice packs under his armpits. Also, turned the room temp down, turned up the fan blowers in the hepa-filtered wall airflow system, & gave tylenol twice. Finally got it down to 102, but now it's back up to 103.3. Blood cultures negative after 24 hrs, but they usually take about three days to grow out if any infection's there. He's been having tremors intermittantly for the past week, and they're thinking it may be from the cyclosporin, although they said they usually don't see it causing tremors that early on. They've been giving him benadryl & ativan which helps a little, but today, he's been getting them real bad, and I think the muscle friction may have helped increase his temp. He ate half a bowl of instant oatmeal for breakfast, but after the temp, he felt too bad to try to eat anymore, and he was also nauseated some. Fortunately, he had already gotten up and had his bath & done his physical therapy before all this started. We're trying to keep him moving to help keep his lungs clear, so he won't get pneumonia from laying around in bed. He's still a little pink from yesterday, and they think the rash might have been from the fortaz instead of the vancomycin. He started acting like he was ready to have some fun today, & was in a pretty good mood this morning. I got him a pair of nerf ping-pong paddles with five balls so he could take out his frustrations by bonking people (mainly me). He thought that was pretty cool. When we were at St. Francis, he liked to shoot me with nerf darts to wake me up when he wanted something. He's constantly apologizing for being a bother, or for vomiting. He tries so hard to keep others from being upset with him, it's no wonder all the nurses like him.

August 16, 1999 (3:00 am): It's now day +6. Temp went up to 102 yesterday, so they drew blood cultures & started vancomycin & fortaz (antibiotics). We're hoping it's a neutropenic fever (just because his white blood cell count is down) instead of infection. We expected it would go up any time now, and were actually surprised it didn't happen sooner. He got a rash from the vanco, "red man syndrome", so next time, they'll run it in over 2-3 hours instead of 1 hour. That worked for him at St. Francis. I must have misunderstood, but he's not getting meds for his B/P unless it goes over 160/120, so he hasn't had any since BMT day, and it's been staying 120's /80's. His platelets went up to 31 yesterday, and today they're 25. They don't give any platelet transfusions here until it's less than 10. Hemoglobin was 9.8 both days, so he doesn't need any blood today. His white blood cell count remains less than 0.4. Mouth sores and nausea continue to be problematic, but he's still eating a bite or two off each tray. We're getting recent pictures developed to add to the web pages, hopefully by Thursday, so if anyone reading this had their mug caught by Greg's camera, please let us know if you don't want to be posted on the internet.

August 14, 1999 (11:30 pm): Sore throat's a little worse & the dry air doesn't help it any, but it's necessary to keep germs down. Still barely eating 2-3 bites each meal. Nauseated 3-4 times, briefly. B/P remains stable with meds. Temp remains less than 100.0. His platelets bottomed out last night at <11, and he got 6 units this morning. His white cells remain <0.4, so he has no resistance to infection. Hemoglobin's been pretty good at 10.8. He started sounding a little congested during the night, so today we made him get up in the chair a few times and do deep breathing exercises to mobilize the secretions to help prevent pneumonia. Mimi & Papa came to visit today, as well as some friends from Tulsa & Shawnee.

August 13, 1999 (7:30 pm): Day +3 has pretty uneventful so far. A little nausea, but not too bad. Blood pressure's been under control with meds. Now we're hanging out waiting for signs of engraftment of his new marrow. We're watching for an increase in platelets, white cells, and red blood cells by day +28, which will show that the marrow has set up house and is producing new cells. In the meantime, the blood counts are still going down because of the radiation & chemo he got. That should bottom out, and then start coming up sometime between day +20 & +30. They start to get worried if they're not rising by day +28 though. Around the same time the marrow engrafts, he'll start getting the graft vs host effect. We want a very tiny bit of that for the graft vs leukemia effect, but we don't want the marrow to recognize Greg as foreign, only the leukemia cells. Some symptoms of GVH can include skin rash which may peel if severe, mouth & GI tract ulcerations with 3-4 liters of diarrhea per day, and/or liver enlargement with right sided pain & elevated liver enzymes on lab. So now we know what to watch for while we wait. In the meantime, today was much better moodwise, and Greg & I got to spend some good quality time together making up silly songs and stuff.

August 12, 1999 (midnight): Well, he finished day +2 without too much trouble. Had a little nausea, but better than yesterday. Diarrhea started yesterday because of all the antibiotics. He's been feeling tired all day, not wanting to get out of bed. He couldn't finish his exercycling when Physical Therapy came, and practically crawled back to bed, so I wouldn't be surprised if he needs another unit of blood soon. His pain has been better, unless he's just not complaining as much. The child life coordinator brought him "October Sky" to watch, and he really enjoyed it. Our church youth director came to visit, and Greg really enjoyed seeing him, even though he felt too tired to say much at the time. One of his nurses brought a poster and solar system banner to decorate his room, and we added glow-in-the-dark stars all over the banner. I told him he'd have to turn the lights on or it wouldn't glow, and he just made a face. He'd rather be a vampire & live in the dark. I got a little bummed out today. Yesterday, the doctor told us that Greg's Leukemia is the Philadelphia chromosome type. I looked it up, and learned that the usual genetic mutation in Leukemia occurs when the long arms of the 9th and 11th chromosomes are switched as a cell is dividing. However, with a Philadelphia type, the long arms of the 9th and 22nd chromosome are switched. What that means is that Greg's type is very aggressive and hard to treat (and we already knew that much). Anyway, I got bummed out when, while looking that up, I ran across a graph that showed survival & mortality rates of A.L.L. patients after a BMT. I wished I hadn't seen it. Later, the insurance company told me they weren't going to cover some of my expenses they said they were going to cover for mileage & food, so they didn't have a check for me today, as they hadn't decided which receipts they were going to reimburse for. It'll all work out eventually, but it made me angry to expect a check and then find out it wasn't coming. When the youth director came, I vented my frustrations, then I felt guilty for making his visit so depressing when he really came to see Greg. That's how it's been though. One day you're up, and the next day you're down. It's an emotional roller coaster that I wouldn't wish on anybody. "Saint Danny", the chaplain came by tonight and reminded me about the strengths Greg has in his favor, so I'm finally feeling a little better tonight.

August 11, 1999 (4:30 p.m.): Greg's been feeling a lot better today! He's had some intermittant short-lived headaches with nausea as his blood pressure's been running on the high side, but nothing as severe as last night. They said it's from the cyclosporin (anti-rejection drug), and that it should eventually return to his baseline levels. He got a Weird Al Yancovic boxed set of CDs in the mail today (Thank You Bill & Beverly!), and he's been singing along with those. The child life specialist came & played nintendo games with him. It's great to see him smiling & having a good time!

August 10, 1999 (10:00 p.m.): Oh what a cool day we had! Terry, Angela, & William came to visit for the day. Congressman Bill Young, who is Chairman of Appropriations, & founder of the National Marrow Donors Program, along with his wife Beverly & their entourage were coming to Ok City to survey the tornado damage. Bill & Beverly met Greg's donor at the hospital & stayed with him until he was recovering from his anesthesia. Jumping onto a Navy 8-seater jet, Beverly carried Greg's marrow on her lap, never letting go of the cooler until arriving in Greg's room to show us it had arrived. At that time, it was whisked away to the lab for processing before it was to be given to Greg. While we waited, Bill & Beverly presented Greg with a cassette tape of Weird Al Yankovic's "Running With Scissors", and a portable cassette player, batteries included! They were accompanied by the doctor who obtained the marrow from Greg's donor, two Navy personnel, their personal get-it-done guy, the hospital CEO, two photographers, the hospital chaplain, and a boatload of onlookers. We took a zillion pictures, and obtained signatures on his "Happy Birthday" bear. Greg was smiling, and joking with everyone, and really seemed to enjoy everyone's company. About an hour or two after they left, the marrow was ready, and we sang "Happy Birthday" to Greg as it went in at 6:00 p.m. A few seconds later, he started complaining of his face burning, and we started dealing with the transfusion reaction over the two hours it infused. Trembling, fever, chills, rash, vomiting, blood pressure 186/134 with severe headache (& low platelets = no clotting if he should stroke). They gave him all sorts of meds that should have knocked an elephant out, before he finally responded adequately. It's now two hours later, & he's still vomiting, but they said that he should be over this part sometime tonight. They said that the reaction is because he's O+, and the new marrow is A+, but that they expected this and have dealt with it before. As he needs frequent blood products over the next couple of weeks, they'll draw blood to type & cross each & every unit (instead of the usual every three days), and initially give him O+, switching over to A+ as his blood starts leaning more in that direction. It was great to see Terry, Angela, & William today. We didn't realize how much we'd missed them until they were here, and it was really tough to say goodbye again. Greg was especially glad to see his brother & sister, as he's been feeling so lonely & isolated locked up in here. Which reminds me. The chaplain, Danny, had a bone marrow transplant in the very same room as Greg a year and a half ago. We had a nice visit with him today, talking about his experiences and feelings. It was also GREAT to actually meet and see and touch a walking, talking, living survivor, especially after Greg's day yesterday.

August 9, 1999 (9:00 p.m.): Day T minus one is nearly finished. Greg started the day off a little upset because they woke him up early just to use the incentive spirometer (breathing exerciser) and do his mouth care. He said "I thought this was supposed to be my day of rest. Can't you at least let me sleep late"? After physical therapy, bath, & more mouth care, he finally got some time alone. Unfortunately, it was during lunch hour, and they didn't bring him his tray. When he finally asked for it, it had already been sent back. Mom to the rescue with a burrito from Taco Bell (minus the cheese & onions per doctor's orders). I figured if he likes these things so much, I'd better tip the cook so he'll make 'em right tomorrow. You should have seen the surprised look on his face! Backing up to this morning...I had to run some errands today, and just as I was leaving, Greg said that he felt like just packing up and going home. I told him that after the radiation & chemo he just finished, he'd die within a week or two if he did that now. I've always told him that anytime he'd had enough & wanted to quit, that he could, but I sure didn't expect to hear it today. About ten or fifteen minutes later, he said "What if I wait until after the transplant, and leave tomorrow night"? I gave him the same answer, and told him we could talk more when I got back. While I was gone, a 28 year old patient (also from Tulsa) died in the room next door, after complications from his transplant. (That's why they were busy and forgot Greg's lunch tray). We talked about how healthy he is going into this, and how his chances for success are pretty good. We also talked about not feeling sure about it's success until it happens, but that it's okay to feel afraid. He seemed to be in a little better spirits after talking, and then he watched some videos that they had brought in earlier.

August 8, 1999 (9:30 p.m.): Greg finished up chemo today with the last round of cytoxin. About an hour or two later, he started complaining of mouth pain, but no sores are evident yet. About ten minutes later, he got sick at his stomach, so they gave him some ativan for nausea. Later, he wanted a burrito from Taco Bell and an apple pie from McDonald's, so of course I got them, and he ate about two thirds of each one. That's more than everything else he's eaten combined this week. For his mouth, they started him on a swish & swallow rinse called Miles Solution that has lidocaine, maalox, decadron, and nystatin. His white cells dropped to 1.3, so he has to take sponge baths instead of showers now, because inhaled droplets can carry microorganisms that he can't fight off. His platelets are down to 111 and his hemoglobin is down to 9.7. The doctor says he should be needing blood products starting in the next three or four days. His temperature is up to 100.0, and his cheeks show it. He's starting to act a little tired, staying in bed more & not very interested in anything today. He got on the computer for a little while, but then he got tired and wanted me to read his e-mail to him, instead of reading it himself. He remains is good spirits, smiling frequently.

August 7, 1999 (midnight): Just ending day T-3 & starting T-2. Greg had his chemo (cytoxin) without any vomiting, although he was a little nauseated & didn't eat more than a few bites. One of the side effects of cytoxin is bladder wall bleeding. When he was got it in Tulsa, they gave him high rates of IV fluids (increased urine flow prevents the chemo from adhering to the bladder wall), and a "rescue drug" called mesna. I noticed yesterday that when the doctor wrote the chemo order that he didn't write an order for mesna, so I asked him about it this morning. He told me that different doctors use different protocols, and that high dose fluids was sufficient, as only 5% develop bladder problems. I told him that Greg was one of the 5% who didn't go into remission in the first month of chemo; one of the 5% who had an anaphylactic reaction to VP-16; one of the 5% who developed a blistering peeling rash to methotrexate. He ordered the mesna for Greg, along with high rate IV fluids. Also, he said that Greg should be feeling worse each day until about 14-15 days after the transplant, and then he should slowly get better over the following two to three weeks. If there aren't any complications to delay things, he should be able to leave the hospital then. His white blood cell, hemoglobin, & platelets are dropping more rapidly now (as expected), and should bottom out in a few days, requiring transfusions until his new marrow engrafts.

August 6, 1999 (midnight): He made it through the last of the radiation, and tolerated it much better today. His appetite is back, and he was able to nibble a little at his meals today. He watched some movies today. His nurse made shadow puppets, talked with a funny fake accent, and juggled for him. They started him on a fentanyl PCA (pain med pump) yesterday, and it's working well for him. His skin was a little too pink for my liking around his Hickman catheter site today when they changed his dressing, so we'll have to keep an eye on it. Thus ends day T-4 and begins day T-3.

August 5, 1999 (midnight): Less nauseated tonight, but still not up to eating anything yet. He watched a video tape and played on the hospital's computer. It's called star something, and Troy Aikman set it up at various hospitals. Each computer has a video camera and microphone, so the kids can talk to each other from all over America. Kinda like the internet, but just for hospital kids. He borrowed an idea from another web site, and drank a syringe-ful of ketchup, telling the nurse "the other nurse must have left this in my bed when she drew blood for lab". He also put on his happy face mask, which has a bullet hole & blood painted on, and called out to his nurse for pain medicine for his headache. He hasn't been feeling well enough to do anything like that for days, so of course I was glad to help him pull it off. Just now going to bed. We've got to up early to go to radiation at 7:00.

August 5, 1999 (noon): Today is T minus 5 on the countdown. Greg's been nauseated almost continuously, and hasn't eaten since night before last. Greg is convinced the radiation is aimed directly at his stomach, because it hurts so much during & after the treatments. He's got one more treatment this afternoon, then two tomorrow, and he'll be done with those. After that, he'll get two days of very high dose chemo, followed by one day of rest, and then the transplant. One of his teachers came to see him last night, bringing him some balloons & surge (soda), so he was a pretty happy camper. His jaw swelling is going down & nearly gone. The Hickman catheter site is not quite as tender as it was. Physical therapy is going to be coming once a day ("Oh, not that"!). I just learned that one of his doctors here is Dr. Epstein of the Epstein-Barr virus. Pretty impressive, huh? Another doctor is Dr Gupta, pronounced GOOP-tah. There's also a PA whose name I've forgotten at the moment, but I must like her, 'cause she's a redhead. They all seem real nice so far.

August 4, 1999: After Greg's 2nd radiation treatment yesterday, his glands started swelling around his ears & jaw, a lot like when he was first diagnosed. They said it usually lasts around 24 hours. He didn't feel like eating dinner due to the jaw pain and nausea, but he did eat some chicken noodle soup around 10:00 p.m. last night. He slept pretty good during the night. This morning he doesn't seem quite as swollen. The radiation made his stomach hurt, so he's trying to take a nap to sleep it off. I drove all over town trying to find a grocery store last night to get him some food I know he likes, and wandered about 20 zig-zagging where-am-I-and-can-I-find-my-way-back miles until I finally found one in Del City, a suburb to the Southeast. His sense of taste & smell are starting to become distorted, and nothing's tasting right to him (not that he really feels like eating anyway). They brought him a boom box to use, so he listened to his Weird Al Yankovic CD during his radiation treatments. The doctor loved it & confessed to being a closet Al fan.

August 3, 1999: Well, we made it here Sunday, & stayed the night with Donna in Jones. My brakes started squealing & crunching just as we got here, hopefully just from the heat & the long drive. Greg got to meet some of the people who've been rooting for him, and he had fun learning how to play darts. He started feeling nauseated that evening, & threw up the next morning before leaving to check into University Hospital. After a couple of delays, he finally got his Hickman catheter & lumbar puncture. He threw up on the way from surgery to the BMT unit, so when we got here, he had to stop in the shower room before he could walk from there to his new room. His catheter site was hurting, so he got some morphine. We spent the rest of the evening doing the usual check-in stuff (assessments, answering questions, lab, etc...), and finally got to sleep around midnight. His lumbar puncture showed 2% leukemia in his spinal fluid, and after consulting with the other doctors & the bone marrow registries, Dr. Selby decided to proceed as planned with the transplant. He got his first dose of TBI (total body irradiation) this morning. He'll be getting it twice a day for 4 days. He said it made him feel toasty warm inside, but he also complained of a stomach ache. Not really sure if that was from the radiation, the vomiting, or the hunger (he hadn't eaten for a day and a half). He finally got to eat some eggs, but he didn't like the fake milk, so he didn't eat his cereal. The nutritionist came in to tell him he could write anything he wanted on the food menu, & they'd make it. He can't have milk products, pepper, or fresh fruits/vegetables. So, that rules out pizza (cheese) and the ham & cheese sandwich from the vending machine that he's been asking me to buy for him. The child life specialist came in to see what kinds of activities he'd be interested in, and she's going to bring back some movies & games. So far, so good.