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(check back often as this is being updated and finished) Stacy Ahrens di Francesco's
BMT Hospital Diary
Primary nurse: Lisa K. Team: Sophie, Jocelyn, Margaret RN: Lisa… Barb… Sue… Beth… Jean Tech: Dawn, Senait Day -3 Monday June 8th Natalie, Amy and Beth came with Stacy for admission about 10:30 a.m.. Amy and Natalie spent the night. Stacy had her first chemo tonight. Bone Marrow Harvesting went well. Catheter Line went smooth: Surgeon was going to place in chest, but the vein was too thin, so as discussed, she placed the line in the neck vein which runs under the skin and out the upper chest. Line is working great, surgeon did a beautiful, clean job. Stacy got pain medication for the pain in her upper chest and neck. Chemotherapy (Cytoxan) began at 1:00 a.m. Lysophilline drug started (trial) we don’t know if she got the real thing or just an impostor of non medicated liquid. This is supposed to reduce the GVHD. (Natalie and I stayed overnight the first night so it wouldn't be so scary and we would be there if Stacy needed someone. Beth was with her all day on Tuesday, and Bruce and Kim visited and cheered her up.)
Day -2 Tuesday June 9th Beth got here about 6:30 a.m. Amy and Natalie left when Beth got here. Bruce got here about 3 p.m. and stayed till Amy and Natalie arrived about 8:30 p.m. Amy and Natalie spent the night with Stacy. Stacy had chemo again tonight. 2nd dose of Chemo. (Cytoxan) started at 12:30 am. Natalie and I stayed again Tuesday night for no reason at all but to be there.
Day -1 Wednesday June 10th Beth got here about 6:30 a.m. Amy and Natalie left when Beth got here. Bruce got here about 7 p.m., and set up Stacy’s computer. He brought her a couple butterfly’s. Bruce found a spot, and spent the night. Beth is back with her this morning and I think Kim and Bruce will visit again. Bruce is bringing her computer in so she can get on line with a bigger screen/keyboard. It is now 12:45 p.m. and so far so good. Stacy's spirits are great! We are dealing with normal anxieties associated with this treatment process. I hope they are normal anyway. LOL! Day 0 Thursday June 11th it’s Thursday morning 7:30… Stacy had an uneventful night. She did sign on to AOL for a few minutes this morning. She woke up a little headache. The irradiation is scheduled for about 11:00 am…….. Bruce It’s about 10;30 and Stacy decided to wear her RED THONG’S and Green bathrobe to irradiation " LOL ( its true) The Men down there will have something to talk about today. I hope they like Red ones, because last time I think she wore her Blue ones…..Beth TBI started at 11:00am. It is now 1:20pm and we just got back to the room. Stacy did great. What a strong courageous sister we have. She is resting now. Her red thong bikini was definitely the right choice. TBI was a series of four quick sessions in a row, one front for nine min., one back for nine min., and each side for approx. 1-1/2 min. ea. side. We came back to the room after TBI, and Stacy felt extremely weak, and nauseous. She got sick shortly after laying down, and needed pain relief for a bad headache and pain in her upper chest. They gave her morphine that was temporary relief, and then shortly after it was followed by other pills. She began to run a fever that was around 100 degrees. She felt really bad for awhile. Its now 5:50 and we are expecting her new marrow to arrive any minute. Beth, Natalie and I await anquiously, and our mom hopes the donor has a good disposition. LOL. Its Rob Schapers birthday too today. Happy 5th Birthday to you Rob! Be Right Back, Nat wants to say hi ………………………………….. Amy Well it’s 6:25 the marrow has arrived 6:30 - HAPPY RE-BIRTHDAY STACY, marrow completed at 7:15 p.m. 7:00 - Stacy’s temp is normal now, Bruce just got here at 7:00 p.m. and told Stacy, your irradiation must be working because your finger is bright red. "she has a pulse thing on her finger that "GLOW’S Bright Red" LOL………..BETH Stacy’s neck and face are a little swollen, the doctor took a look, and was determined to be from the irradiation she received. 10:15 p.m. received a unit of blood, which finished at 12:50 a.m.. About 12:30 a.m. Stacy had some Chocolate pudding, she said it tasted good. Bruce opened the cot in Stacy’s room to stay in room with her tonight.
Day +1 Friday June 12th Well the morning started out with a nice foot rub from me J ( NO GLOVES KEITH) LOL! It’s 4:00 I have been here since 9:30 Bruce stayed the night with Stacy. She had a real good night she slept though the night. But not so sure Bruce did ! That’s what family’s for. Lysophilline - study drug made her sick again , ( chills, vomit, hot, cold, and a real bad headache.) Needless to say they pulled her off of it.( well that’s what Diane say’s ) They gave her something for the pain ? and she has been sleeping very quietly with her raggettity Andy doll that Mom sent for her. It’s 4:15 Stacy’s back up and asked me to get a Bike, Stacy rode the bike for about 2 ½ min. At 4:45 Dr. Frankle came back in to talk about the study drug Lysophilline, He wants Stacy to try to stay on it because it helps with GVHD and it would be to her benefit to stay on it, He will give her something for the headache and chills before giving her next dose around 7:00 p.m. tonight, and a Nurse will stay in the room after she takes it , and see how things go , so we will wait till then lets hope they make the right cocktail for Stacy.. Dr. Frankle said her cells measured CD34 Dose = is over 5. Not really sure what this means but it’s something with her marrow, everyone said it’s really good. 6:00 p.m. They just came in with a cocktail DROPERIDOL 1MG - ADAVAN ½ MG - morphine 1MG They have a order in for another 1MG of morphine if needed when the 7:00 dose gets here of LYSOPHILLINE , lets hope this works, 6:10 Kim just got here . 8:50 Not real sure if she had a reaction from the trial med but she has a real bad headache so they gave her another 1MG morphine. And started the Methotrexate. The Lysophilline started at 6:00 p.m. they told us it would be at 7:00 p.m. …………..BETH Bruce got back at 9:30 p.m. Stacy took more Meds around 10:30 p.m. It is 12:20 a.m. now and Stacy has been resting well. 12:45 a.m. drew blood… more meds ?? DROPERIDOL 1MG - ADAVAN ½ MG - morphine 1MG prior to the Lysophilline. Lysophilline started at about 2:00 a.m.
Day +2 Saturday June 13th Stacy had a restful night. Bruce stayed in the room with her. Stacy also received another unit of blood. At about 7:30 a.m. (when Bruce was still sleeping) Stacy was discussing with the nurse about discontinuing the drug Lysophilline. Stacy skipped her dose this morning. About 9:00 Stacy got dressed in her bluejean overalls. Stacy ordered Cheerios and milk for breakfast. Stacy also ordered Bruce a croissant and a coffee, the croissant was good, but the coffee….yuck!! Stacy’s lucky day, she laid on her stomach and Bruce gave her a back massage… she said it was great. The on call doctors came in to check on Stacy. They also talked to her about altering some of the meds that she is getting which might be creating the headaches and nausea that she is having, they do not think that the headaches or nausea is coming from the Lysophilline. Stacy had some more meds (pills). The nurse came in about 10:00 a.m. to change Stacy’s dressing. Stacy was nauseous and vomited a little about 11:15 a.m. She also had her first bowel movement about 11:45 a.m. Stacy has been resting well today.. good spirits. Stacy’s lunch order today is, water, Chicken noodle soup, Italian Ice, Angel food Cake and Crackers … I think Bruce may have ordered the Cake for himself. 12:30 p.m. vital sign time again. 1:30 p.m. Stacy’s lunch arrived Candy came to visit, Michele and the kids are at Stacys house. Michele wanted to visit , but she had a cold last week, So we thought it would be best to wait to visit. 2:00 p.m. Stacy received ½ MG ADAVAN for Nausea and another back rub. 3:00 p.m. BETH’s back and let me say my brother Bruce is doing a fine job. Candy even said he would make a fine nurse. 5:30 Stacy’s having really bad bloated, feels like gas pains in her stomach, the nurse said to drink ginger ale , to make her burp. The ginger ale didn’t get here in time because…………………………………………………………………… 6:00 p.m. Candy, here , I’m in the room alone with Stacy, she just went to the bathroom pissed I guess, well then I heard her vomit , I didn’t know if I should go in or stay out , I blew it, naturally I made the wrong choice , my sister Beth wouldn’t have made a bad choice, anyway I finally went in, I thought she was going to faint , she didn’t ,I helped her finish puking helped her out of the bathroom to sit down before she fell down. I proceeded to run for the kleenex , per her request. I certainly got that fast, (good job Candy). She used the kleenex to get the thick stuff out of her mouth. Then I tried to find a wash cloth , but to no avail. I did however find a gauze to wet for the back of her neck, first I patted her forehead with it. Stacy then brushed her teeth and washed her mouth out. After this incident Stacy was a new person , she felt much better, in fact she looked much better. I love my sister , however next time I’ll call my sister Beth. 7:45 p.m. (Bruce) geez… its a good thing I’ve been paying attention.. The nurse (Tessie) came in to change one of the drip bags on the omni-flow machine because it was beeping.. I had to point out and show her the empty one that needed changing… she had a tough time changing it, but she finally figured it out. 10:00 p.m. Stacy getting more ADAVAN 11:00 p.m. Stacy getting headache 11:15 p.m. Stacy getting meds (pills) for headache and other stuff 11:30 p.m. Stacy vomits up pills… 11:45 p.m. Stacy is not nauseous anymore 12:00 a.m. Stacy’s headache feeling much better. Bruce is staying the night.
Day +3 Sunday June 14th
7:30 a.m. wake up time for vitals 8:00 a.m. nausea threw up, followed by chills start receiving new type ? meds iv for nausea 9:00 a.m. Sick again Also getting Headache 9:30 a.m. Oxycodone (pills) for headache continuing with ADAVAN every six hours. 10:00 a.m. resting comfortably again 12:00 noon Stacy woke up after nurse came in , Candy here I got to help me lil sister bath again , it’s been 38 years since the last time. She , we both did real well . After we dressed her , I gave her a cocktail, consisting of a vitamin, Actigall and something else. She took them fast must have been pretty good. There changing her linens now and Stacy is relaxing in her recliner. Stacy is back in bed and resting comfortably now. 1:00 Nurse came in to take vitals. Stacy is still resting comfortably. 1:40 Stacy up said a quick hello to Kim from Hawaii and went to the bathroom to rinse her mouth. 1:50 Kim from Maryland arrived. Stacy talked to Kim for about half-hour. Lunch came about 2:25 she ate part of her banana. She is resting again. The banana did not make her sick. 3:30 Amy here to relieve Kim and Candy. I will be your host till about 7:00 am tomorrow. Jean is Stacy’s nurse through evening. Stacy looks pretty good, I noticed the swelling in her face and neck has gone way down since Thursday evening. She seemed happy that she didn’t see me for the last two days. LOL. Steve and I went to the boat for the night, and I slammed a couple back for Stacy at the Rusty Rudder, cruised the boat, and wore my thong bikini. I told her she liked it. "vodka, sea, and sun". Thanks Bruce, Beth, Candy and Kim. 5:00pm - uped the ADAVAN dose-will help with headaches 7:00pm - Sophie’s on tonight. 9:20 - I had Stacy call Natalie before she went to bed. Stacy told her how she was doing and that she loved her. 9:25pm - Stacy got sick. Took her meds after, b/c she knew she was nauseous, and knew if she tossed her meds within 20 minutes of taking them she would have to retake them. 10:25 - All well still, I’m sleeping over, just washed up, and am going to bed. When I returned to the room, Stacy asked me "why I brought her Jerry’s subs". Then she asked me "where I put the bag and what I got, and that she didn’t want any". Then she asked "if she was hallucinating", and I told her yes, its OK, she must have been hungry. I guess I would be hungry if I knew I had to wait a year to eat any restaurant food. Stacy’s nodding back out, so its time to sleep. 11:45 - Sophie took about 8 vials of blood. Thank god for the line. All these meds and blood drawings, whose arms could survive. They will be checking for CMV virus, blood counts….other things too (missed it, need to confirm, cause they check consistently) Shakes continue when she gets out of bed to go to the bathroom. She got an oven heated blanket……warm and good!
Day +4 Monday June 15th 5:00 am - (Amy) Good morning! The perks of being sick. Stacy’s feet hurt, nurse checked 15 min ago, appeared OK, I gave Stacy a foot massage w/lotion. Extremely dry (prob. From radiation) Must of been good, sound asleep within two minutes, but I continued massage for at least five minutes. 5:30 - Wally came in for vitals again, he has been monitoring through night, temp, blood pressure, pulse all normal Stacy has successfully quit smoking. This is her 7th smoke free day. Congratulations Stacy! No caffeine for a week either. Nurse said possibility of the severe headaches from going cold turkey on the nicotine and caffeine. Nurse said something about the patch, but it seems to me since she has been off nicotine for 7 days, that its a little late to start a patch. Hmmmmmmm. 10:30 it’s me Beth I just got here Stacy looks good. Stacy started the morning off with a nice leg and foot massage from Beth. Her skin is starting to get real dry. But not yet as dry as Keith’s feet were. HA .. HA. She seems to be real tired since I saw her on Saturday. Bruce, Candy, Kim, Amy you all did a great job Sunday. 11:35 Stacys wants a back rub. Well not much of a back rub. 11:40 a fellow Dr. fu, is here and says Stacys counts starting to drop. 11:44 Dr. Spitcer has arrived. Stacy had asked to see him. We talked about the food not really sure what she can have , Stacy said they brought her some fruit and it had a bed of lettuce under it, and If that’s the case she will request a nice big salad. Well needless to say Dr. Spitcer will be checking into it I hope. No she will not be eating a salad for lunch today. 12:10 she is sleeping! I asked them to post a chart so we as well as Stacy know what her counts are at all times! Stacy feels very hungry and wants to eat but nothing seems good. She took a bite of an Italian ice. Stacy is very hungry and wants to eat, Beth ran (drove) up to Safeway. 2:45 I just got back from Safeway and got some rice and some frozen entrées for Stacy, I made her some rice with butter I think she likes it, I just saw Susan Bruch’s father he has suggested instant mashed potato’s. I think I will try that next time. 4:00 Stacy has been sleeping pretty much of the day. Bruce arrived about 4:30 and lucky Stacy gets another one of Bruce’s special back massages. 5:45 Stacy had some matzo soup. (Bruce) It is amazing sometimes… when the Omni-Flow machine starts beeping, it means that a med. bag is empty. When we call for the nurse it takes any where from 2 minutes to 20 minutes for them to come to the room. I hate to think if there was a big problem, that needed immediate attention.
Put a call in to the nutritionist today to find out details on weather or not we had to start preparing Stacy’s meals. All the precautions we were taught prior to the transplant seem to be on the back burner here at BMT unit kitchen. A new mode was suppose to be in operation in the kitchen for cancer patients since there appetites are so limited. They are suppose to be able to order when they are up to eating (sounds smart! Ya know when you can manage to find an appetite to stomach anything). Since Stacy’s immune system is sacrificed, food is suppose to be well cooked, no fresh fruit that is not peelable, no salads, no veggies uncooked, no tap water and most of all food has to be prepared and served immediately to avoid any contamination. Well they’ve broken all the rules, so they’ve basically screwed up. Waiting to hear from the dietitian, cause none of the nurses or doctors seem to have an explanation for all the screw ups. 7:30 Amy and Natalie arrive to visit Stacy. Nat hops in bed with her mom, they look so comfortable. We are watching "The American President Movie". About 9:30 Natalie and Amy left. Natalie is going to Hershey Park in the morning, it should be a lot of fun. (Bruce) Stacy seemed to be very good today. She seems more awake and perky since I got here. The one thing that I am aware of though is that this is most likely "Calm before the Storm", I am in hopes that the Storm will be calm and quick as it passes. 10:30 yum… yum.. more Adavan for Stacy, also her catheter line bandages are being changed also. Amy, Beth and Bruce have been keeping a log of notes on the computer, which has been nice, so it is easy to remember stuff. For the most part all we need to do is copy and paste into AOL then send, much easier then trying to remember or retyping it from a log book. We are putting a wall calendar up tomorrow, so the nurses can record Stacys counts on it as they get them, I think it will be nice for Stacy and us to know everyday. What her counts are Bruce is with Stacy tonight. By the time Stacy leaves the hospital Bruce should be getting his Doctors degree. It’s 11:30 p.m. and Stacy is sleeping… and of course it’s Bruce typing this in tonight. More updates Starting with Day +5 to follow… nite…nite..
Day +5 Tuesday June 16th 6:30 a.m. (Bruce) yawn… The evening went good uneventful, well I guess it did anyway, I could have slept though it, anyway no one woke me. 6:30 a.m. Stacy is getting another bag of Blood. 6:45 a.m. Stacy woke up hungry so she had an Ensure High Protein Drink (Wild Berry). Must be good she finished it. 7:00 a.m. She has a headache, so they brought her in two Oxycodone (pills) for her headache. 8:30 Headache still with her but they can’t give her anything because it is to close to her last dose of Oxycodone. One option if it gets worse is going to be Morphine. 8:30 a.m. Fire Alarms went off. Geez its been sounding for 20 minutes and still dinging and lights flashing in the hallway. They assured us that is only a test.. ha..ha 9:00 a.m. Fire Alarms still sounding… not good for a headache. Finally 9:05 and the Fire Alarm stopped.. YEAH!!! Stacy needs a nail file… (Bruce) went to the gift shop to get her one.. geez… too many to pick from… I picked her up an assortment of files, I hope at least one of them will be an okay style. 11:00 a.m. Stacy is napping resting well. 11:30 a.m. Stacy woke up.. took her meds (pills), and also still has a headache. 11:40 a.m. the Mop Tech has arrived… the Mop Tech comes around once a day to clean the floors and dust. The smell of the cleaning stuff that they use is bad enough to make anyone sick. Because of Stacy’s headache we had to ask the Mop Tech to return a little latter to finish. 11:55 a.m. For her headache, they brought her in two Oxycodone (pills). 1:00 p.m. Stacy took a shower, and got dressed into a nice colorful blouse and blue jeans, I guess she’s ready to go out. 1:30 p.m. Stacy’s headache is still bad, the Oxycodone (pills) do not seem like they have helped her headache. The nurse is checking with the doctor to see what else Stacy might have for her headache. Stacy keeps telling the nurses that some Advil or Tylenol would work just fine… but we know that if either of these are taken, they might do okay on the headache, but the possible signs of a fever would be diminished at the same time, and that would not be good. 1:50 The nurse brought in Bllargal (pills), they decided to try to treat the headache as a one time migraine. I hope they work. 2:00 p.m. Stacy has not had anything to eat today except for this morning she had an Ensure High Protein Drink. 2:30 p.m. Stacy said that the headache is still there. 3:30 p.m. I guess the Bllargal (pills) are not working for Stacy, she still has a bad headache. 4:00 p.m. Dad and Beth arrived, Stacy’s dad is from Clearwater Florida, he came up for a couple of days to visit and see Stacy, Beth met him at Stacy’s house where he will be staying and drove him to the hospital with her. 4:10 p.m. Robert arrived, yep another of Stacy’s brothers. 4:30 p.m. Morphine was given to Stacy with hopes that it might help her headache. 5:15 p.m. Stacy, threw up and got sick when she went to the bathroom.. afterwards she said she felt a little better. 6:40 Mail arrived and lots of it ! Stacy, opened all her mail and also read the cards and notes herself. 8:30 - Hi its me Amy for the evening shift. Stacy is sleeping, and nurses have told me that they are still trying to treat this headache. I was surprised not to see Bruce here. LOL. We are all dealing with anxiety attacks when we are not here. We are hopeful that our cell phone bills never arrive. LOL. 8:50 - Dr. Spitzer approved a one time dose of Tylenol. I doubt she’ll see that again. They don’t give aspirin or Tylenol to BMT patients b/c they are fearful if a fever is coming on, it will mask it, and they need to be very aware of any fevers. 8:55 - Dr. Evadi came in to check Stacy out. Made her headache worse. 9:00 Stacy took Tylenol orally. Barb is Stacy’s nurse through morning. Barb has also said that they are reducing the dosage of Cyclosporine. They have adjusted dose and are hopeful the headaches are being triggered because the dose is too high for Stacy. 9:30 - Stacy had a sip of banana ensure, she didn’t like it so I went to get her a different flavor. Came back with vanilla. Doesn’t it figure, she wanted the chocolate. Went to change for chocolate and she drank most of it. (I think that was her dinner!) 10:00 - got online to ask BMT support online if headaches were common. Seems that a lot of BMT patients get this headache thing. Miserable!
Day +6 Wednesday June 17th 7:00 a.m. - When I woke up Stacy was working on getting dressed. T-shirt, overalls, and Starboard sweatshirt over that. She asked me to get her a zip up sweat shirt if I go to the beach Friday. Hopefully I will find one. She was very cold. It was very exhausting to get dressed, like running a marathon. 7:30 a.m. Stacy ordered bagel for breakfast. I (Amy) ordered OJ. Stacy also ordered yogurt and they brought it. That’s a no no till her counts are up.
8:30 Beth on duty. Stacy ate ¼ of her bagel , They brought her yogurt. The food service really sucks here . Jean is her nurse on duty . She seems to be one of the best. I really like her. She got very mad at the food service people , I think she put them straight ( I hope). She is going to get Stacy some baby food and chocolate ensure .
9:50 Dr. Fu just got here. She really did not have much to say, she asked me if she still had diarrhea but I told her she should ask Stacy, because I never knew she had it. Well I was right she never did . WHY DON’T THEY CHECK THE CHART BEFORE COMING IN TO THE ROOM. ??????????????? She wants to give Stacy the patch ( for smoking) Stacy has not smoked in 9 days, yeah for you Stacy. She thinks that is causing her headache. Stacy has been crying a lot today, She seems to be a little sad, and very frustrated maybe she is getting sick of people asking her any type of questions. The Hospitals doing a study on dry eyes, Well I do know one thing for sure. The Ahrens family is ruled out. We might not all have the same blood to be each others match but, we all have given a lot of tears. Boooooy are we an emotional family.
2:30 Joanne and Tonya went for a walk to visit Stacy and I but Joanne said when she looked into the room we were both sleeping, she said it was pretty funny, Tonya was a lady that Stacy, Amy and I (Beth) met at the caregivers class in May. Needless to say Bruce has been re-named #1 caregiver. I do think Amy and I are #1 too, But …. Well…..you know….
4:15 I made Stacy and Susan Bruch some chicken broth and rice, they both seemed to like it.
4:30 Guess who just got here……………. Wrong not Amy it’s BRUCE, I will be leaving soon. Beth
5:30 OOPS… good news Stacy had her second bowel movement. I got here just in time (Bruce) haha
Bruce brought with him a bunch of goodies that Michelle Worman from Hurst Texas had sent for Stacy… they are… An Angel to look over Stacy till she is well, a wall map of the United States and cork board, straight pins the wall map will be used to post and mark where all her friends are that send their love and support (stick pins and tags will be used to put the name and also the state).. I am sure Stacy will have this map filled.. coast to coast. Michelle also sent bags of hard candy, I suggested we use a bed pan to hold all the candy.. but Beth went to get a few Tupperware containers.
6:00 Dinner has arrived, A Strawberry Milkshake yum… yum… Stacy ate and drank some of it, Bruce finished what she didn’t.
6:30 The nurse, Jean, came in to check on Stacy, we talked about the next step which is Steroids, they are supposed to start tomorrow. Jean explained some of the possible effects, some of which are… maybe not going to the bathroom as much, swelling of the face area, not sleeping as well, and of course MOOD SWINGS.. may be very up one minute… crying another…, I know that Amy and Beth are looking forward to these Mood Swings.
I told the nurse, Jean, that we are ready to start charting the blood counts, and track them for Stacy. She will get today’s information for this, so hence forth, we will be able to keep it up by getting the information from the nurse on duty for the days to follow.
7:10 Tonya another patient stopped down to see Stacy, Tonya is supposed to go home this Friday, she has been here about 8 weeks, and her transplant was CordBlood (The first done at Georgetown University). She is in for MM. Stacy really enjoyed the visit. She told Tonya to stop in on her clinic days.
The nurses bought in the daily count sheet, which has Stacy’s counts listed since day -2 on June 9th. We will be maintaining the chart in the room and updating it on a daily basis. The Items listed are … WBC, H&H, and PLT
The counts for today, Day +6 June 17th are…. White Blood Cells (WBC) = .4 Hemoglobin & Hematocrit (H&H) = 11/33 Platlettes (PLT) = 45,000
This has been a fairly uneventful day, which was good for Stacy. She has slept a good part of it, and has been feeling good for the most part.
I finished out the night by checking some of Stacy’s e-mail with her. The evening has been good, and relatively calm.
Day +7 Thursday June 18th Today is Amy day!! The RN for the day is Amy P. (nurse), the Tech is Amy, and Amy (Stacy’s sister) will be here later today…. Stacy woke up in good spirits… said she had a dream last… it was not good or bad.. just a dream. Kim from Laurel called last night and might be over to visit this afternoon for a little while. Stacy ordered breakfast, she ordered Corn Pops cereal and an OJ for her, and an Croissant and OJ for Bruce. Stacy went to the bathroom, then said she was very tired, and laid down and went back to sleep. Stacy’s breakfast arrived at 8:30 but she was sleeping again. Dr. Fu came in about 9:00 and started asking Stacy to many questions.. how does she feel… do you have a headache… did you go to the bathroom… do you have diarrhea… are you nauseous… Well, by the time the Doc, was finished Stacy wasn’t feeling well again at all… she felt very nauseous…
Geez… I think the Doctor was making her sick… Well, the doctor left the room and I sat down next to her and talked for a second, then got her some of the Corn Pops to eat, which she did eat some, after that she was feeling fine again. Stacy is resting again.. maybe today she will feel good enough to jog around the room, sit up in the recliner chair and ride the bike that is in her room for a little while. Stacy is supposed to start on the Steroids today at some time. Stacy is extremely tired today, I guess it could be because her WBC and PLT is dropping so fast and low. 10:00 a.m. Beth got here and Stacy took a shower. 11:05 a.m. First Steroids given.. shot through line 11:10 a.m. IVIG Started through IV 11:45 a.m. Stacy receives a letter from her Bone Marrow Donor.. wow.. 1:30 Keep in mind our loving family is on shifts , I ( Beth got here at 10:00 12:30 Lunch I made Stacy some rice with chicken broth she really likes that. And ate a lot. I ordered a hamburger, " gross" No wonder nobody eats there food and is losing weight. 1:30 Guess who left YEP your right Bruce, I know how he feels because its very hard to leave like you might be missing something. Or the next just might not do it as well as yourself. I myself have found it easier to leave because Bruce is doing such a great job. Amy is doing a fine job too ! 2:30 Stacy is very restful and seems to be moody, well OK she doesn’t seem, "SHE IS"! this is the part, I like the best L . 3:00 Stacy asked me to go for a walk. And I did , 4:30 I am back, Stacy got a lot of mail today. I am glad I came in with something that made her happy. Card’s and little notes are great. It really worked, she has been crying a lot, Steroids! But each and every card really made her smile then there were ones that made her cry…I hope her friends keep sending notes and cards. Stacy ate some macaroni and cheese for dinner. 7:45 Wally came in " nice guy" very up beat. 8:15 Kim, Brent, and Bob came to visit. I held Brent up to the window so he and Stacy could kiss through the glass. He just doesn’t understand why he can’t come in to see her. Bob is out in the family waiting room with Brent. I will leave shortly and let Bob come in for a visit, however; I really don’t know if I should trust him and Stacy alone in this room together. I guess it’s safe for now since she still has her hair, because Bob likes big butts and baldheaded women, so for now its still okay. 9:00 Amy here, I arrived late. Stacy was starving. I bought up the grocery store because Stacy was craving veggies. Bought frozen broccoli, asparagus, green beans, mixed veggies in soy. Lots of soup to stock the family room. Ready when Stacy asks. Mom made 2 containers of mozza ball soup and sent a card with 3 fortune cookies (mom told me the card was dated 1999, but I have not read it yet). Made her broccoli and asparagus, she took a few bites of each. She was famished from the steroids. I brought Stacy a little longevity bear. Cute as a button. But she wants to sleep w/Raggedy Andy, hope she’s nice to the new little bear. 9:00 these IV meds were going: Fluconazole, Cyclosproine - 52mg, adavan
We want to keep PLT (Platelets) above 10, Hgb (hemoglobin-red cells that carry oxygen) above 8.0 and We want the WBC (white blood cells to go to 2,000 count. When counts of WBC reach 2000 it is probable it will be time to go home. Currently she is bottomed out. Nurse said all counts are right on schedule. 6/18 WBC=0.2, Hct=34.1, Hgb=11.8, PLT=36 12:10 Vitals. All normal, no fever, good night to sleep. Goodnight. 1:00 am. Interesting conversation with Wally. Teaching me about all the ups and downs that take place with Drs., nurses, staff at hospital. 1:45-about 8 vials of blood or so…..
Day +8 Friday June 19th 7:00-Stacy woke up starving when the waiter came in to take breakfast order. Ordered two milks, two oj’s, and two boxes frosted flakes. Ended up having box of corn pops on hand, couldn’t wait!, ran to fridge and got milk, whoops forgot spoon. Stacy asked for a fork she was so hungry. Ran down to get spoon, got back before she could finish with fork. Yeah! Breakfast arrived about 8:10, I drank my oj. Overall Stacy’s in a pretty good mood. Regular meds arrived including steroids (good thing Beth is on her way) LOL. Amy P. is on duty today. (the nurse, not the sister) 10:45 Beth here , I stopped by the nurses station before coming into the room, Stacy is in a great mood. I brought her some mail that was at the nurses station, that really lifts her spirits. I think I might tell them only give the mail to me, because Stacy is so happy when she gets to here from all her friends, and family, since she cant have many visitors. I like when she is in a good mood. 12:00 Chet and his wife Ellen came to visit Stacy. We met them in the hospital support group, he was here for his visit, it was great seeing him, he looks great! (Bruce) wow.. Stacy is in great spirits.. She is dressed ready to go out!! On the way down I had to bring her a printer for the computer.. so she can print out stuff from her hospital room, I picked up her mail so she can look at her bills, she also had me bring some games.. I brought the Parcheesi Game and the Backgammon Game with me from her house. Geez… I am now wondering when she is going to have this Bone Marrow Transplant.. ha.. ha.. She had some company today which was good.. You should see her room now…. The walls are covered with all of your notes, wishes, cards and thoughts… it’s great!!! Stacy looks forward to getting your cards and letters everyday… KEEP THOSE WISHES AND PRAYERS COMING……. The Nurses think it is great that Stacy wants to do all the stuff she has been doing for the past two days.. getting up.. eating.. games.. walking around the room.. exercise bike.. etc.. etc.. I had the first batch of photos developed yesterday, and they turned out great.. I have been taking at least one picture a day of Stacy. I put one of the pictures of her and Natalie on her computer background wallpaper.. I will send a picture of Stacy soon maybe along with the updates or something. I also brought down my Hair Clippers… Ohh yeah!! I can cut hair also.. I’m real good at crew cuts.. So far Stacy hasn’t started to loss her hair, but I think within the week it should start to come out… but you really never know with Stacy maybe she’ll be the exception, and not loss her hair.. yeah right… One of the nurses likes Sharks, so I brought her in a Beanie Baby Shark to give to her. We now have two large containers LABELED "NURSES BAIT" "PLEASE COME BACK OFTEN", Thank you Michelle (BDWORMAN) the hard candies are a success… Stacy loves them also. I have been thinking of creating a web site for Stacy, for her Story and BMT experiences , pictures etc.… but I’m not real sure weather that would be a good thing or not… or even weather or not "If I Built It" … "They Would Come" J I think I will need feed back before I start, any comments let me know…. (FunWithIce@AOL.com) Stacy was hungry.. so she called in her Food Order.. Fried Chicken and some other stuff, including Dove Ice Cream Bars… yum.. yum.. She has eaten very well today, except I think she is upset because Natalie came by earlier and ate her last Chocolate Pudding. J It’s about 9:00 p.m. and Stacy is watching TV . A good thing to remember is, if your cathedar tube starts turning to red, when your not getting blood… "DON’T PANIC" just CLAMP IT!!! About 9:30 p.m. I decided to take a little walk Stacy was napping… I came back a little bit later, only to find Stacy sitting up in bed with the telephone in one hand talking to Amy, a popsickle in the other hand eating it as she talked on the phone, and an open can of pringles potato chips.
OK.. Story time.. (Bruce) Have you heard that M&M’s candies are having a instant win contest. The wrapper says "Look for the Millennium Candies and you may have the winning wrapper".. $2,000,000.00 yep.. two million. The Millennium Candies are the Red M&M’s. If you open a pack and there is only red M&M’s in your pack you may have won instantly…… well.. Yesterday I bought a pack of M&M’s and set them next to the computer. I didn’t open them. I took off to go home, Beth was here at the hospital with Stacy now, and Amy is staying the night (Thursday). I arrived back Friday afternoon, Beth had just left, and Stacy said she was hungry.. anyway.. the evening went on.. then Beth called, and I spoke with her for a couple minutes, then Stacy said she was hungry for Chocolate and for me to hand her the M&M’s (I was still on the phone with Beth) . Stacy in bed proceeded to open the pack as I watched.. she slowly dumped the open pack onto the Bed.. WOW…they were all Red, I thought GREAT.. I think we got that special pack of Millennium Red M&M’s… I was so excited… I moved over to the bed so I could carefully open the Package to read about our Instant winnings.. (all along Beth was on the Phone.. she was laughing so hard).. I got the pack open.. I read "Sorry this is Not a Winner, Please Try Again" what a let down.. geez Come to find out that when I was gone for the day, Beth went out and got a bunch of M&M packs, opened them took the Red ones out, and carefully opened my M&M package and filled it with just the Red ones, then resealed it, and put it back where I had left it. I guess the Joke was on me.. man was I excited.. I did tell Beth when she gets back, just to watch out where she sits J . End of Story 11:00 p.m. Stacy is napping again.. I am thinking to myself that when I wake up in the middle of the night she will be sitting up in bed watching TV, eating something. J Beth has done such a good job this week, Amy and I have decided to give Beth Saturday and Sunday off. The entire day went very well, and relatively uneventful.
Day +9 Saturday June 20th it’s 8:00 a.m. Stacy and Bruce are sound asleep.. then the silence was broken, the pager came on and the front desk secretary.. calling for Stacy saying something like the dietitian wanted to speak to her… Well, then the person that takes the food order for breakfast gets on the intercom.. asking.. what Stacy wanted for breakfast.. Geez.. I guess they came to the door and Stacy was asleep so they woke her for her order by calling her on the intercom.. Stacy was pissed to say the least.. Anyway Stacy ordered Corn Puffs and Milk for her breakfast. Stacy had a good night, and slept well. This morning she wanted me to go find her some StarBucks "Café Macho" medium with X-tra cream J Stacy and Bruce watched a movie this afternoon "The Birdcage" Each evening about 1:00 a.m. or so they draw some vials of blood for testing, some of the results of this are the blood counts, which is used for that days counts. Stacy’s counts for today are;
Dr. Spitzer came in this after just to say hi, and see how Stacy is doing. He said Stacy was doing very well. They retook Stacy’s counts for this afternoon, because they wanted to watch where here PLT were, when they drop below 10,000 she will be receiving Platelets though IV;
I went out to the grocery store which is only a few blocks from the hospital, to get Stacy a few things. Today has gone very well so far, Stacy has eaten well and been in good spirits all day. This has also been a very emotional day, for Stacy, I think a combination of the Steroids and time to think. The weather was very nice outside she has two large windows in her room. Stacy would of love to be outside. I spent the entire day with Stacy today, it was great to be with her. She sat up in the chair a good part of today, and got on AOL to read some of her E-mail. She did a lot of walking around the room also. 7:40 p.m. Lacixe IV injection, to help her go to the bathroom. Stacy received platelets tonight through IV. 8:30 p.m. Stacy had some of Mom’s Motza ball soup. 9:00 p.m. meds (pills) Today Stacy has kept me busy throughout the day, which is a good thing, so today the notes are few. Her day consisted of all the regular meds and fluids (IV) that she has been getting everyday. Stacy’s emotions are in full swing, tonight. She has been crying a lot tonight, It is 12:30 a.m. now they drew Stacy’s blood again about 30 minutes ago. I gave her a back massage and she fell asleep, she is sleeping now, and I am sure she will sleep through the night. What Stacy is going through, I would not wish on anyone, it is hard very hard, she knows that it will not be easy, but as strong as she is and with all the support she has from friends and family she will make it through just fine. I made up her breakfast order, Raisin Bran Cereal, milk and OJ, and taped it to the door so they would not wake her in the morning for it. Well, it is 1:00 now, time for me to get some sleep..
Day +10 Sunday June 21st (Bruce) …. A little before 8:00 a.m. as I wake… guess who is up? Yep, you guessed it Stacy is sitting at the computer signed on to AOL, checking and reading her E-mail.. Lisa K. is the nurse for this morning.. Stacy said she had a little headache, so she took an Oxycodone pill, and also that her eyes felt very dry, so they order her some eye drops. Breakfast came about 8:30, Stacy had Raisin Bran Cereal and OJ. About 9:00 and Stacy is napping again. 10:00 Stacy got her "Hypo Tears" eye drops.. she said "mmm"… that feels good. Stacy also, received her dose of Steroids. Our lunch order was for some Milk Chocolate Dove Bars, and Italian Ices. Today counts are ;
Neutrophil (ANC) > 500 x 3 days and no other problems - Stacy can go home. Also, Cyclosporine level must be stabilized. It would be nice if after Stacy reaches the go home levels… that instead of going home she will be able to stay at the hospital a few extra weeks for an extended stay. Dr. Spitzer, came in and talked for a few minutes. Dr. Spitzer says that Stacy is doing very well so far. It’s almost 12:00 noon, Stacy has picked out her clothes for today, would you believe Shorts and midriff top , she is shaving her legs now, and will be taking a shower in a few minutes. Stacy could not wait any longer… I went down and got a number of towels, and Stacy went in and took her shower herself, I waited outside the door till she was finished.. Stacy did a great job… When she gets out of the shower and dressed I will make her a gourmet meal… Maybe Stouffer’s Swedish Meatballs with Pasta or something. OK.. Stacy’s dressed now (shorts, mini T-shirt) ready to go sit by the pool, and tan a little, I guess she should take a little money so she can also get a drink or two.. or better yet she can just charge it to the room.. HA.. HA I made Stacy a great meal… Swedish Meatballs with Pasta and Sauce… Broccoli Spears with Blue Cheese Dressing to dip them in. mmmmmm… sounds good doesn’t it. J Stacy got online a few time today already, checking and reading her e-mail, and seeing a few of her friends online also.. it’s 3:00 .. Amy will be coming down later about 6 or so today and spend the night tonight. It looks like Amy and Beth will be busy for the next five days, I am leaving in the morning taking my family to Virginia Beach, and will return Friday. I told Stacy not to be very surprised if she sees me this week, maybe I will drive up midweek for the evening or something. 6:00 p.m. Stacy is feeling good. 6:40.. Stacy just scared me.. I was at the computer, Stacy was sitting up in bed.. I heard her scream softly.. I turned she was looking at the sheets and her shirt.. around the cathadar area.. she thought she was bleeding.. after a split second we decided it was just chocolate… she must have dropped some chocolate from her Dove bar earlier that had melted all over.. geez. I was very glad it was chocolate and not blood. 7:00 Amy here. Glad to have such great brothers and sisters in a time of crisis. Glad I’m not in this alone! Stacy looks great! 9:00 meds arrived, and Stacy has the names down pat. Heated up some motza soup for her that mom made w/side of spinach, she inhaled all of it. Moms cooking will do that! Stacy and I had time to talk tonight, she was probably more alert than I would have liked, because we cried. God I hate it when we talk sometimes. She asked me to light a cigarette, cause it looked like I needed one, and I did. I mean I needed a cigarette, but decided to go up to my special place on the roof (which everyone and their brother knows about now), figured the nurses would get pissed off if I lit up in her room. LOL. 9:30 Nat called to tell her mom she loved her, and would see her tomorrow.
Day +11 Monday June 22nd
Today counts are ;
8:00 Sophie’s here (nurse), her last day. She’s moving positions to breast cancer clinical case worker. Hate to see her go. Blood samples to check Cyclosporine levels, and misc. Breakfast arrived, Stacy had raisin bran and Amy had croissant w/OJ. 8:45-Shower time! Doing Great! Pain in lower back. 1:00 Beth here, Well Bruce and Amy you did a fine job! Bruce remember " THEY MELT IN YOUR MOUTH ..NOT IN YOUR HANDS" LOL. Stacy seems to be having a very emotional day, She is starting to lose her hair, 2:00 guess what Stacy had for lunch ? Yep matzo ball soup. And she loves that stuff. 000. Beth brought Tony and Natalie to hospital for visit. About 6 or 7:00 Tech (Linda) came in to shave Stacy’s head. Sorry Wally, it was your night off! Stacy and Nat watched The Man Without a Face in the room, and Beth and Tony watched a movie in the Family waiting room.
Day +12 Tuesday June 23rd
Today is really Wednesday, but I have to go back a day because no-one wrote one word in today. Emotions were a roller coaster ride today with each of us, a bit too emotionally distraught to speak (or type). The kind of day that everyone would like to forget. So all is forgiven and now forgotten, and its our little secret. Tim and Kim were today’s visitors, Thanks guys! Needed you bad today!
Today counts are ;
Day +13 Wednesday June 24th Pam S. came for a lunch visit today. Thanks Pam for cheering her up! Natalie was here today too! Today counts are ;
7:00 (Amy) I arrived with card and dinner in hand. Broccoli and potato, frozen and minced. Only a few bites, but that’s OK, saving room for midnight snack. Stacy looks great, I last saw her on Monday morning, and she looks great sporting her new dew. We talked about the possibility of her being released on Friday….Shoot, another marathon to run-need to really start thinking about getting apt. sterilized for her return. Bruce & co. called from Va. Beach. They are having a great vacation. Stacy and I took time out to talk and look at some photo’s I picked up. We cried about the past couple days, words and thoughts exchanged, and laughed about how Stacy had taken a couple photo’s of herself because Bruce was not here to take them. 8:00 - have not seen a nurse or tech in quite some time. Wonder if they are on vacation too. Maybe they are with Bruce. LOL. 8:30 Wilson the Tech showed up for vitals. Assured us that the nurses were not w/Bruce on vacation, but going over patients progress in meeting room. Yeah right! 8:45 - Stacy had to go to the bathroom, and the damn tech’s still haven’t taken care of the bathroom. Of course Stacy took matters in her own hands, put on rubber gloves, and emptied the waste herself. Gooooooo Stacy! She wouldn’t let me do it. Guess its under control when she returns home. LOL. Natalie your off the hook. LOL. Jennifer Doyle showed up, should have seen the smile on Stacy’s face. Old high school buddy. It was such a treat. They reminisced with old high school yearbooks that Jennifer brought. Thanks Jen! 10:30 For dinner Stacy had Swedish meatballs and I had Mac ‘n cheese. Gotta love that Stouffer’s. 12:00 I’m not staying tonight, heading home - Stacy is getting sleepy.
Day +14 Thursday June 25th Lisa k , Stacys nurse came in to tell her about a dream she had last night about the two of them,, she dreamt that she snuck Stacy out of the hospital in a disguise and they went to a bar and had drinks together, LOL then had to sneak her back into the hospital so know one would know she was gone,lol lol Beth here well , I really was here on Mon., Tues., real hard days. Needless to say my sister Stacy was a real Bitch, she was just very mean to me , Steroids YEP they are the best! I know she did not mean anything by it, But when you give someone everything that you have to make them comfortable and nothing is good enough or right, or maybe not fast enough , but I will tell you that the Energizer bunny should have seen me go! Go Beth go ! When she asked for it , she got it , anything from going to the apt to get her mail, to Safeway to get her food to preparing her food, to not making it the way she likes it, to forgetting that she asked for mustard. NOTHING STOPPED! her towel’s to shower it just never stopped on Mon. or Tues., but here’s to you Stacy…………………………… Sisters sometimes were real close friends. We stay up late and talk at night other times we don’t get along there are even times we don’t get along but I know she’s always there and I know she’ll always care she’s my sister I love my sister I’ve given her a great big hug when she was feeling bad and then again I’ve said some things that have really made her mad but I know she’s always there and I know she’ll always care she’s my sister I love my sister but I know she’s always there and I know she’ll always care she’s my sister I love my sister <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 WELL I THINK THIS BEST DESCRIBES STACY AND I !!!!!!!!!!!!!!!!!!!! Beth, I cant believe it took till day +14 to sing that song!…….Amy Today counts are ;
Guess what they said they are increasing her steroids today- just great! Well I will be back in a few days, LOL 1:00 Dr. Fu just got here. Stacy is doing real well in fact…. they say she can leave tomorrow! No more isolation after today,. She can also start walking the halls today. But she won’t be leaving till Monday. See Stacy, Miracles do happen, and everything is going to be OK .
3:30 Stacy has requested some stuff from the vending machine, so with a list in hand I start writing fritos blueberry pie twinkies cool ranch doritos Beth , just buy anything that looks good. So I went with list in hand. For any of you that don’t know me, I am a large women, so you can just imagine how I feel heading to a vending machine , what people must of been thinking," LOOK AT THAT GIRL GO " FRITOS, APPLE PIE , TWINKIES, WELL SHE REALLY NEEDS THAT! WELL I RETURNED TO THE ROOM , WHAT A PIG, LOOK AT STACY GO! I have never seen anything like this before!! 3:55 WOW EVERYTHING’S GONE! 7:30 Amy here. God I could not stop laughing when I read Beth’s entries for the day. Yep, Steroids are kicking in! Made Sloppy Joe’s at home and Stacy and I had dinner together. 8:50 Sophie (tech) came in for vitals. All Good! 8:00 Jeannie came for a visit tonight. Looks like she’s here for a while. 9:00 Look who it is! The doctor, cant believe it, haven’t seen him for weeks, thought he retired. Went over discharge information with the reminder that we are not out of the woods. Dr. Frankel will provide Stacy with a prescription for hepafilter recommendation. Its an air filter that we will use for the sterility of the air in Stacy’s apartment. We are hopeful that insurance will pick this up. Friday or Saturday all the prescriptions will be written and we will need to fill them prior to Stacy’s release. (Monday) All meds are transferring to oral. Need to tolerate Cyclosporine prior to discharge. IVTX-home health care will be the service that will come to the house. Bactrim is a medication that she will be starting, it is an antibiotic given to prevent PCP pneumonia which can occur in patients on immunosuppressant drugs - it is hard on marrow, and will suppress her counts, her platelets need to rise, and this will take another week or two. Beth will be pleased that her Steroid dose will stay at a high of 1MG/kg for the next 2 weeks. Good thing Bruce is on his way back home. LOL. Even though Stacy is being released on Monday (we are not out of the woods) we are very aware that a journey still lies ahead of us. We will begin to prep her apartment for her return. It is highly probable that she will be returning to the hospital for additional in-patient treatment. Heparin Stops tomorrow. 10:30 Stacy starts her Cyclosporine orally in liquid form. I’m leaving, Stacy and Jeannie are watching A Simple Twist of Fate. Goodnight!
Day +15 Friday June 26th (Bruce) I have returned.. I had to go to Virginia Beach with my family this week, because I knew Stacy could use some "beach", I brought her back some sand and sea shells, Natalie says that she can put on her swimsuit, and we would set up an beach umbrella, and get out a beach chair for Stacy to sit in. Then I guess we will turn all the lights on so it will be bright like the sun. Now Stacy can enjoy the beach without going anywhere.
(Bruce) Geez.. I’ve only been gone for a few days. When I arrived at the hospital tonight, it seems someone has done a lot of re-arranging of patients on the floor, some one has been giving haircuts, and what happened to the shoe booties, gowns and masks? I left knowing that Amy and Beth would be here with Stacy, and make sure that everything went well this week for Stacy. However… after checking their time cards, I really wonder.. J The first thing when I entered the unit tonight the nurses said, wow what a nice tan.. did you have a good time… and that sorta stuff. When I was coming down the hall towards Stacy’s room, I noticed that Sue Brock moved her room (I guess she wanted a suite like Stacy). When I got to Stacy’s door.. NO more signs were up, saying "Gowns, Booties and Mask Required" I went into the room slowly… I guess I didn’t feel right because I wasn’t dressed in the gown, booties and mask.. but I went in anyway. WOW… look at Stacy J she looks wonderful.. and No hair.. (Stacy looks great in long, short or even no hair at all) Last Sunday I did bring with me the hair clippers.. I guess someone found them decided to try them out. So Monday it seems will be the next eventful day, they say she can leave!!! Leave?? Yes, that’s right they say that her counts are doing very well, and may go home on Monday. She was out of isolation today, and walked the halls a few times.. (actually I think she might have jogged around the halls) because she said her legs were a little sore tonight. Natalie and I are spending the night tonight with Stacy. I stopped on the way here tonight and picked up a Veggie Pizza (frozen) for Stacy. I understand that Stacy had a few visitors today. Was Beth here today?? I wonder because there were no notes for the day + 15 when I arrived, Beth, where are you!!! Miracles Do Happen!!! Today counts are ;
I will continue in the morning on day +16 nite…nite.. Day +16 Saturday June 27th 1:30 a.m. Stacy is having a hard time sleeping, nurse bought her down some pills to help. 7:30 a.m. Scrambled Eggs, Bagel and Milk, Stacy was hungry. Today counts are ;
This morning Stacy took her bucket full of meds. She also lost a couple pounds.. hard to believe because all she is eating, but the weight drop is only due to being taken off the IV fluids. For your information 30cc of fluid equals 1 ounce of fluid. Stacy should be consuming (drinking) a minimum of 2000cc fluids each day which is about ½ gallon, or 3 - 20 oz sodas, or 2 liters of wine. (no Stacy can’t drink wine, silly) It’s about 11:00 a.m. , and Stacy just got in the shower. I had this weeks pictures developed today. Stacy checked more of her e-mail today, and also went to the BMT chat room for a little while. 11:30 p.m. I went down to the vending machines and bought one of each item. Stacy was hungry a little. Stacy has been doing well all day, she does have a little pain were the cathder is . She did a couple loops around the hallway today. Tonight, Stacy flushed and cleaned her lines…. She was great.. Stacy will need to clean and flush her cathedar lines everyday. It will not be an easy task for Stacy, but she is strong.. she will lay out the items needed, six syringes, three caps and alcohol pads, nice and neat to prepare for the flushing, then flush the lines, clean the line ends, and replace the caps on her lines. Stacy should be able to change them again tomorrow and once more on Monday before she goes home. Most all the prescriptions have been written by the doctors, they have indicated that they be Dispensed as Written when filled. Amy has been at Stacy’s house cleaning, getting it ready for Stacy’s arrival home.
Day +17 Sunday June 28th Today we woke up tired, I think it was a restless night. This morning is an overcast Day, with a little rain. Today counts are ;
Stacy’s counts have been doing very well. WBC and ANC raising a little each Day. Breakfast came, Stacy had Scrambled eggs and Bagel. The nurses have not been coming around quite as often, but I guess that is due to not being hooked up to the IV omni-flow machine. Geni, one of Stacy’s best friends is picking up some plastic mattress and pillow covers for Stacy’s bed at home, these are like giant size baggies to cover her mattress and pillows. Stacy had her morning meds (pills), and the nurse also drew blood to check her Cyclosporine levels. When the nurse was finished, Stacy went ahead and flushed her line. Discharge reviews were gone over with Stacy, from the nurses. There will be other instructions, and possible changes tomorrow prior to Stacy’s discharge. Evening.. Stacy’s stress level is noticeably increasing, I am assuming that is because of her discharge tomorrow. The update for the past couple of days have been slim, but Stacy medically has been doing very good, her sprits have always been very good, and she definitely has a good outlook on life. Tonight she had her lines flushed and cleaned, and also took a some Adavan. There will be more tomorrow……………
Day +18 Monday June 29th … yawn… a little before 8:00 Stacy called for the nurse to bring down her counts, towels and empty her hats. Well it is a little before 9:00 now and still no one has come down to see her. Not good!! Yes you could of guessed it, Stacy’s stress level is high.. Anticipation of leaving and going home. Stacy took an Ativan this morning.
Today counts are ;
8:30 I, BETH WENT grocery shopping for Natalie and Stacy so they would have some food in the house today when they get home! 10:30 - Amy here! Bruised and Battered! Cleaned Stacy’s apartment from Friday night ‘til Sunday night. Wanted to make sure it was as sanitary as possible for her arrival and her sacrificed immune system. My knees are bruised from de-dusting mini blinds in the tub, muscles ache from getting every crevice, and head and jaw hurt from slamming upside a bathroom fixture while cleaning the bathroom floor. I have just arrived at hospital with Natalie. Knew all this stuff in the room should have been brought home this weekend-took us 3 hrs. to pack the boxes and load the car. Its been a very emotional day. Nurses are ready to kick her out before everything was in check. Good thing Stacy’s on top of things and educated at this point on meds that she must leave with. 1:30 - Nat & I bring Stacy down to car. Bruce is talking on the phone in room. A man is ticketing both mine and Bruce’s cars. Shit! Needless to say, not an appropriate time! As I screamed at the man Stacy insisted he come to her door or she would get out (she reminded me this would not be a smart thing) duh! Not a pleasant conversation. So we leave, and Bruce gets the tickets. Sorry Bruce, hope you get out of that one. Are you feeling sorry for us yet? 2:00 - Stacy arrives at apartment, crys, we unload the car, and apartment is as messy as it was before I cleaned. Next time I’ll remind Stacy to pack lighter. 3:30 I dropped off twelve or so prescriptions to be filled. 5:30 - Stacy decides to teach Natalie how to make gourmet pasta sauce ten minutes before she goes for her cousin Tony (Beth’s Son) Birthday Dinner. "HAPPY 13th BIRTHDAY TONY" Raw mushrooms and everything - I went ballistic! Too much, too soon, didn’t want to readmit her today. Beth and Natalie went up to the Drug store to pick up Stacy’s prescriptions after they returned from dinner. Stacy and Natalie will be alone tonight… Everyone including Stacy, needed to have "Time Out".
Day +19 Tuesday June 30th
Today counts are ;
8:15 Hello everyone well I just got to Stacy’s. Stacy stayed her first night alone, well I mean with only Natalie. Yep can you believe no Amy or Bruce. They ( Amy and Bruce ) needed a much needed break. After transporting Stacy home. 9:30 I took Stacy to the hospital for her clinic apt, she is doing real well Amy and I prepared some questions for the doctor. As I read them off. Stacy did flush her catheter. All by herself wow , was I proud of her. Dr. Frankel said to put lotion on all over. Stacy liked that , no limits on her back rubs, Dr. Frankle said she sounded a little queasy in her left lung. So tomorrow another appt at the hospital for more blood work and a chest x-ray, but her counts are great. Dr. Frankel wanted her to use the thing you blow in to clear her lungs. Natalie has been exceptional. Stacy’s friend Kim (from Laurel), stopped by around 5:00 for a visit. 4:00 - Amy here (not really, just typing after the fact) - O.K. so Stacy calls me at work five minutes after Beth left (keep in mind Beth just conquered another journey at CVS with her list) She said someone had to pick up Lysol disinfectant (in a spray bottle) ASAP. The gallon jug, and the fifteen spray bottles of misc. disinfectants under the sink were unable to do this job! I wonder how toilets were cleaned in the 1800’s. hmmmm. 6:00 - Attempted to call Kim (from laurel) to have her stop for the Lysol spray because she’s on her way to Stacy’s for a visit. I reach her at Stacy’s. Oh well, blow that idea. Pizza party about to start (Stacy can’t have any-Its for Natalie, Bruce & Kim) so I offer to pick up the pizza, since Stacy still needed the Lysol spray (in the spray bottle. LOL. And since there were only two drivers (Bruce and Kim) already at Stacy’s) Keys in hand, I hop in the Mercedes Benz that Steve just cleaned (thanks Steve) and am eager to complete my mission. CRASH, BOOM, BANG. Can’t believe what just happened. I called Bruce to ask him if he could pick up the pizza, I would be busy the rest of the evening. Called Beth to help me pick up the pieces of the Benz on Tuckerman Lane. Is it possible for things to get any worse??? Beth and I decide I need a drink & we go for margaritas. Beth’s cell is ringing off the hook. Bad news travels fast. Hope the pizza party went well. Hope someone picks up that Lysol spray bottle. NOTE: In crash tests Volvo wins hands down against Mercedes Benz. LOL.
Day +20 Wednesday July 1st 8:00 Good morning everyone, Stacy had a real good night. Once again , Natalie and Stacy stayed alone and did real well. We have a doctors apt. today at 9:00 so we are on our way out the door…….Beth 4:00 - Stacy’s home care nurse arrives (Tracy) She will be here about two hours giving her line meds.
Today counts are ; NO COUNTS WERE DONE TODAY
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