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My Progress Report: Steven Schmidt
1999

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January 07, 1999 - I've seen three doctors this week. Gastroenterologist on Monday, surgeon on Tuesday. Those visits were to just touch base before we leave for Seattle. Everything seems fine from their stand point. Today, I saw my hematologist for the last time before we leave. My counts are just about perfect, 10,100. My weight was 182. Go figure. Maybe I'm already cured! My blood pressure is still a little high but not too bad. I started my disability this week. I've only been approved for four weeks. Go figure again. Hopefully the insurance company will have that straightened out soon since I will actually be out of work 6-18 months. I've been walking about 30 minutes in the evenings and feeling pretty good. We spoke with Seattle earlier this week and were assigned volunteers (a couple) for our stay. They will be able to help out with things like taking us shopping, rides to/from the airport and keeping Jessica company when I'm in la la land. I spoke with one, Heather, and she seemed very nice. We're looking forward to meeting them. Now it's just more packing and planning until late next week. Only one doctor visit next week (dermatologist).
January 08, 1999 - Well, I just received some upsetting news from the cancer center in

January 14, 1999 - My arms are slowly getting better. My counts are still fine, 9,900 and my weight is still climbing, 184. I have started aerobics and daily walking to control my weight. I've also come off of disability and gone back to work. I am still waiting to speak to a couple of people from the Hutch. One physician did talk with my hematologist. She said there was a promising donor that is being tested (among others) and that a decision about the BMT and donor would be made in about six weeks. Keeping our fingers crossed.
January 15, 1999 - Last night was another adventure for Jess and me. I was unloading our dish washer and a knife became stuck. As I yanked it out with my left hand, I sliced the base of my right thumb wide open. Off to the E.R. After a few hours of hanging out and waiting they stitched me up. The doctor said I cut the sheaf (sp?) of the tendon but not the actual tendon. So now I have to follow up with an orthopedic surgeon in a couple of weeks. Always something!
January 28, 1999 - The stitches came out today and everything seems fine with my thumb. I also saw my hematologist and my counts are still great 8,200 but my weight is still climbing 189. But the good news is that my prednisone is being lowered to 50 mg this week and 40 mg next week which should stop some of the horrible side effects including my increased appetite.
February 4, 1999 - I saw the dermatologist today. Arms are still getting better but slowly. My doctor will be speaking with the Yale doctor I've seen about lowering my dose of prednisone again. She will also talk to my primary physician about monitoring my bone density which prednisone effects badly. I hope to hear some news about the testing in Seattle late next week. We're keeping our fingers crossed.
February 11, 1999 - I was notified that the first sample received at the Hutch is not a match. The second sample results should be completed next week. We're still crossing our fingers. My counts are still great at 8,500. My weight gain has slowed probably due to a lower dose of prednisone and diet and exercising. Today it was 190. However, due to the weight gain I have developed heel spurs! Also my blood pressure is still high and my primary physician has increased my meds. for it.
February 22, 1999 - The second sample tested at the Hutch also came back as not a match. The donor for the only other requested sample was unavailable. There have been four new potential donors identified on the National Marrow Donor Program database and their samples were requested last week. It'll be at least a month before those results are available. In the mean time, the physicians in Seattle will be reviewing my case and the mismatched donor already identified to decide if we should go ahead with the transplant now. A decision should be made by the end of this week.
February 25, 1999 - Seattle physicians have decided to continue the search with the four latest potential donors. So we wit some more. In the mean time, my counts remain stable at 8,500 but my weight is still slowly climbing, up to 193 today. I'm fighting to stay below 200. My prednisone is down to 30 mg which has helped keep my appetite in check.
March 10, 1999 - Not much new to report. Blood counts are still 8,500 and weight is now up to 196. I need to decide if I want another bone marrow aspiration. This will tell us if I've reached full remission. My doctor wont do it in the hospital which means no good pain meds. which means lots of pain for me. If I decide to have one, it'll be early April. As far as the testing in Seattle goes, one donor backed out so we are down to three potentials. The first sample results should be available first week of April. The other two are still pending.
March 19, 1999 - We are expecting two samples to be tested and completed by April 8th. The third is still pending. I am in the process of joining a gym with Jess. I need to get a doctors note next week first. I am leaning toward waiting on the aspiration. If I do go to Seattle they will want to do their own. If a donor is not found and I don't go, then maybe I'll have it done here. I'm down to 17.5 mg prednisone and my weight seems to be stabilizing.
March 30, 1999 - Jess and I joined the gym. My weight is down a pound to 195 and my blood pressure has lowered some. My counts are fine at 7,100. I have scheduled a bone marrow aspiration for April 20th. If a match is found next week, I'll cancel it since Seattle will want to do their own.
April 14, 1999 - There were no new matches found on the registry. The staff at the Hutch is now reviewing my case and one of the original donors found last year. This donor is a mismatch but still suitable under the Hutch's guidelines. I hope to hear their decision by the end of next week. I'm still scheduled for my aspiration next Tuesday.
April 20, 1999 - The aspiration is over. Painful but quick. The results should be back in 2-3 weeks. My WBC count was 6,300 and my weight was 193. The staff of doctors, search coordinators and lab technicians at the Hutch is supposed to be meeting this week to discuss my case and what the next step is. I'm still waiting to hear from them.
April 27, 1999 - The meeting in Seattle is over. They are saying that in their opinion, it would be in my best interest to have the transplant now with the mismatched donor. I asked them about possibly testing cousins and they said it would be an extreme long shot. Now we are just waiting for the aspiration results to come back before making a decision.
May 4, 1999 - The results from the aspiration are back and there are fewer cancer cells in my marrow but they are still there. Seattle still feels that it is in my best interest to have the BMT now. I will be meeting with my doctor to discuss things before making my final decision.
May 11, 1999 - Counts are 6,800 and weight is 193. The aspiration results show 30% of my cells still have the Philadelphia chromosome which is the marker for CML. That's good news as it seems to have kept my counts in the normal range and kept my disease stable. However, that still means I'm not in remission. If the disease does accelerate, a BMT would be much more dangerous. Plus, if I were to go back on the interferon and ara-c injections, it would only be a matter of time before the drugs become ineffective. Thus, we have decided to have the BMT now. Unfortunately, I was unable to get in touch with anyone in Seattle today. I hope to talk to them tomorrow to start the planning.
May 12, 1999 - We will be flying out to Seattle on June 5th with my first appointment on the 8th. The first week there will be full of tests. The second week will be for additional tests if needed and the final consultation with the team of doctors to go over the final plan. The second week will also be for us to attend classes on nutrition, medical care, proper cleaning and cooking, etc. If there are no setbacks, I will get my catheter surgically inserted on or around June 21 and the seven days of chemo and radiation will begin the following day. The tentative date for the actual transplant will be June 29. I will be in the hospital for about one month and will need to stay in Seattle for an additional 2 1/2 months for frequent checkups. All of these dates are dependent on the availability of the donor.
May 24, 1999 - Saw my oncologist today for the last time before we go to Seattle- everything looks good- counts are 6,200 and weight was 192. Blood pressure was good as well. Still green flag for Seattle.
June 6, 1999 - Arrived in Seattle yesterday after mostly uneventful flights. A volunteer from the hospital picked us up at the airport and showed us around and took us grocery shopping. It has not rained yet and we have been unpacking and getting settled in. Our apartment is nicer than we had anticipated. First appointment will be Tuesday to talk with the doctor and answer any questions we might have as well as a physical.
June 8, 1999 - First appointment today with the Hutch. We have been assigned to the "Blue Team". This is a team of physician assistants, nurses and other medical staff assigned to us for our whole stay. Filled out a lot of paper work and then met the physician's assistant Mark. He went over Steve's complete medical history and then gave him a physical. We then met with Dianne our "Blue Team" nurse. She did a blood draw and went over our next 2 weeks' schedule. She also gave us a packet of info and a Patient and Caregiver Resource Manual. We will start taking Steve's temp. a couple times a day to see what is normal for him. We then toured the Outpatient Clinic. Weight is 186. Also had chest x-rays taken at the Swedish Medical Center. Everything is on schedule so far and as long as it fits in with our donor's schedule- Steve will have catheter inserted on the 18th, start chemo/radiation on the 22nd and transplant on the 29th.
June 9, 1999 - Today we met with the nutritionist, the social worker and financial services. We also had our arrival conference with our current attending physician and nurse who reviewed the BMT procedure and risks. Weight at 186. White blood cell counts still normal at 6,800.
June 10, 1999 -Another blood draw, EKG and a couple of cultures today. They also measured the level of oxygen in Steve's blood. Bone marrow biopsy and aspiration as well. Steve was administered sedatives. This was the first time he was given any good drugs. It was the least painful so far although still no piece of cake. The nurse allowed Jess to stay so she got to watch. We also picked up an antibiotic- Sulfameth/Trimeth (or Bactrim) - for Steve to start taking which he will stop taking 48 hours prior to transplant.
June 11, 1999 - Steve was to have his pulmonary function tested today but the machine was not working correctly. They did test his arterial blood gas- which was taken by needle from the inside of his wrist. They called it a blood draw but it was deeper and quite painful. We found out today that we can pick-up our prescriptions at the Hutch pharmacy which will be very convenient. We also picked up a multivitamin with minerals and without iron for Steve to start taking. Bone marrow transplant patients are at risk for iron overload because they can end up with too much iron from transfusions if they are needed. Steve also had a brief GI exam and met with a doctor from Pain and Toxicity who discussed how Steve's pain will be handled during his hospital stay. Most patients experience something called mucositis - which can be severe or more mild- which is mouth and throat pain from the chemo and radiation treatments. Our next appointment is on Tuesday so we are hoping to use the next three days for a bit of rest and fun.
June 14, 1999 - Blood draw today. White blood cell count at 6,310. Platelets at 216 and ANC or absolute nuerophil count (mature healthy white cells) at 4,040, which are both normal. For ANC anything below 500 is neutropenic and there is the danger of infections.
June 15, 1999 - Second try at testing pulmonary function. This time Steve completed 4 out of the 5 tests before the machine malfunctioned. We will have to go back there again for the last test. We then visited the radiation room and Steve was measured for when he has his radiation. We also had our first class today. It was Intro to Managed Care and was pretty elementary. After the class we took a tour of the inpatient facilities. We then had a long walk to another medical building that was not part of the Hutch for Cardiology. They performed a Stress Echo test on Steve. So far all of his results that we know about are good. We have appointments scheduled late in the week and are guessing that this might delay the transplant a bit.
June 16, 1999 - Today Steve had an MRI of his hips. Then we had a Food Safety class. We met with our Blue Team nurse who took Steve's blood pressure and temperature. Finally we saw our Physician's assistant (PA) who gave us some guidelines for Steve's care while in the hospital. For example: he recommended exercising as much as possible, not lying in bed all day, making sure to gargle frequently with salt water to help with the mucositis and breathing into the incentive sporometer (sp?) to keep his lung strength. Steve can expect to lose his hair and also have temporary problems with short term memory and concentration. We also learned that the transplant is still on schedule. His Hickman catheter will be surgically implanted on Monday 6/21 under local anesthesia, chemo (Cytoxan) will be given for two days (6/22 and 6/23) followed by a day of rest and four days of TBI (total body irradiation) -6/25, 6/26, 6/27 and 6/28. His transplant will be on the 29th unless there are unforeseen delays.
June 17, 1999 - Today Steve met with oral medicine for x-rays and to inspect his mouth. Eventually they will provide him with a prescription for fluoride to fight tooth decay. He was given a prescription for an oral rinse to use twice a day to help ensure healthy gums since the gums are a common site for infections. The doctor recommended using a sonic toothbrush as well which we are looking into. He also scheduled a cleaning of Steve's teeth for tomorrow. I attended a family meeting alone- it was mainly introductions and the opportunity to talk to other people in similar situations. Meanwhile Steve tried again to complete the last pulmonary function test. After a total of 4 tries on 3 different days finally all the tests for his lungs are complete. Then on to a nutrition class. We also met with his outpatient nurse and PA to look at Steve's right arm. The abscessed area is not healed and his arm had been hurting him. Then last night the area began to drain. They took a culture and will know more in 48 hours. The attending doctor as well as the attending from infectious diseases also looked at it and do not think it is a serious infection. So it should not interfere with our transplant schedule but there is the small possibility of a delay. Last appointment for the day was Managing Care at Home where symptoms and what to do about them were discussed.
June 18, 1999 - First test of the day was a bone scan to measure bone density - this was done because Steve had been on prednisone in the past and one of the side effects can be bone thinning and the doctors want to keep it to a minimum. Chances are he will be on prednisone after the transplant as well so they just want to keep an eye on his bones to watch out for potential thinning as well as have a base line to compare to later on. Next he met with the surgeon who will insert his Hickman catheter - a tube inserted surgically into the opening to his heart for easy access to draw blood as well as administer drugs, fluids and total parental nutrition (TPN) - on Monday. His new bone marrow will be transfused through his Hickman and will find it's way into the bone cavities. The surgeon thought she heard some crackling in his lung which could indicate a cold so she requested another chest x-ray. Before his chest x-ray, he had his teeth cleaned and brushed up on proper dental care. After the chest x-ray we went to the Data Review Conference with our nurse and attending physician where we heard about all the test results, signed consent forms for treatment and research studies and got to ask questions. The results from his bone marrow aspiration are consistent with Chronic phase. He still has 30% Philadelphia chromosomes. Steve's donor has type A blood and Steve has type O. They will do a plasma exchange through his Hickman line to remove the antibodies in his blood that could reject the type A blood that the new marrow will produce - post transplant Steve will have type A blood. The only test result that was a little off was that his glucose was low. Could be because he did not eat lunch on the day they tested him. They will check it again. He also had a blood draw today per the surgeon's request.
June 21, 1999 - Hickman Catheter surgery today went fine. The procedure took about 45 minutes and Steve was able to walk with me back to the apartment. Results of the blood draw on Friday are WBC - 5,900 ANC - 4,100 Platelets - 210,000. Everything normal. Tomorrow he will be admitted into the Swedish Medical Hospital to begin conditioning (chemo and radiation).
June 22, 1999 - (Day -7) Admission to the hospital and countdown to transplant day. Transplant day is considered Day 0 and becomes sort of like a new birthday. Our nurse oriented us to the hospital. Everyone entering and leaving Steve's room must wash their hands so we keep the germs away. The nurse changed the dressing on his hickman line and flushed the lines - he is healing well and the hickman works perfectly. He had a foley catheter inserted; while on chemo they need to make sure that they keep his system flushed of excess toxins. The foley catheter will be removed 24 hours after his second round of chemo. They started a hydration drip and administered anti nausea meds. (steroids and Kytril). Chemo (Cytoxan) went fine- so far no nausea but it is still early yet in the scheme of things - the chemo and anti- nausea drugs were administered by IV into his hickman line. He also started a drug called Itraconazole which will help prevent a fungal infection called aspergillius and possibly other fungal and mold type infections. He also started Acyclovir because he has had chicken pox many years ago and it will help prevent the virus from becoming active. We had many visits - nutritionist, attending Dr. with his posse, PA, PA student and the nurse many, many times. Steve has been swishing with salt water which will help minimize mucositis (inflammation of the mucous membranes) brought on by the chemo. Steve just had a light dinner and actually is hungry for more. They will be taking his vitals every four hours - pretty much they are really on top of everything here.
June 23, 1999 - (Day -6) Second and last day of chemo. Only side effects so far are acid reflux and hiccups and Steve was given medications for both. He is still swishing with the salt water solution. His counts were: WBC - 3,840 ANC - 3,460 Platelets - 165,000 - counts are starting to come down from the chemo - this is what we want happening - the leukemia and bad marrow are being killed off. His weight has started to climb from the Cytoxan. There was a slight trace of blood found in his urine which is normal and will be monitored. He was also given an electrolyte solution to replace some of the phosphorous he may be losing.
June 24, 1999 - (Day -5) This is Steve's day of rest. Also today he had his Foley catheter (you know- the one to his bladder) removed, which he had really been looking forward to. As a result Steve was actually free of any hookups for the first time since admittance to the hospital. Now we will be able to start our laps around the floor to keep Steve's lungs and muscles working the best that they can. No new side effects to report. WBC - 6,720 ANC - 6,180 Platelets - 147,000. We asked why some of his counts have gone up and were told this happens as a result of taking the steroids to prevent nausea. The nurse brought him an incentive sporometer. This is an apparatus you breathe into to help maintain lung strength. It is especially useful if you are too fatigued or sick to walk laps - so right now it is not necessary but it certainly doesn't hurt to have it.
June 25, 1999 - (Day -4) First day of radiation. First session at 7:00 am, then 12:30 and finally 7:00 pm. First two sessions were uneventful and we expect the third session to be the same way. There was no noise and Steve didn't feel anything. Each session was between 20 and 30 minutes. He had one session on his back and two on his side. Today's counts: WBC - 5,200 ANC - 4,900 Platelets - 124,000. His HCT (Hematacrit) is getting low at 29.8. This is expected. If it gets lower than 26 they will give him transfusions for it. He was also given a drug called Lasix to help him urinate more frequently so he will loose some of the weight he gained from all fluids they have been giving him.
June 26, !999 - (Day -3) Second day of radiation went fine as well. Steve is feeling a little bit more tired but that's about it. The radiation room here at the Hutch is a good sized room and is beautifully painted with a beach scene and a garden scene all over the walls. Steve lies on a bed in the middle of the room either on his back or side. He does not have to stay perfectly still but should stay either on his back or side and not switch positions. About 10 feet away to the left and right of the bed are these canisters that look like wood burning stoves. The way that the radiation works is that the radioactive cobalt is raised from the bottom of the canister mechanically at which point Steve is exposed to radiation. At the end of each session the Cobalt is lowered back into the canister and the radiation session is over. Steve is able to listen to a CD of his choice or watch TV while he is receiving radiation. Of course since Steve can't wear his glasses or any other medal, he has chosen mostly to listen to Meat loaf. He is still eating well and hasn't felt sick at all. Counts are: WBC - 1,850 ANC - 1,790 Platelets - 122,000 HCT - 31.7.
June 27, 1999 - (Day -2) Third day of radiation. Steve is a little more tired today. He had some nausea last night. The Dr. thinks it could be from motion sickness and has given Steve a patch to wear behind his ear. He has also put some ice packs on the glands in his neck to help with some swelling he has from the radiation. He was given some potassium today because he was a little low. Steve did not have as much of an appetite today but still ate pretty well. The nurses have changed his Itraconazole (anti fungal medicine) from a liquid to IV form because Steve was having some trouble getting it down. Only 1 more day of radiation left. Counts: WBC - 2,500 HCT - 37 ANC - 2,330 Platelets - !32,000.
June 28, 1999 - (Day -1) Last day of radiation. Steve remains tired. His weight is staying stable. The glands (parotin glands) in his neck are still swollen and he has been keeping ice packs on his neck. They gave him Ativan last night and again this morning to help with some of the nausea. Today he starts an IV drug called Cyclosporine which helps prevent Graft vs Host disease (GVHD). GVHD is when the new bone marrow recognizes Steve's body as foreign and attacks his skin, liver and gut. He will get the Cyclosporine 2 times a day for about 1 or 2 hours each time. The main side effect Steve might feel would be a burning or warm feeling in his hands and feet and this can be fixed by slowing down the rate of infusion of the drug. Counts are: WBC - 1,490 HCT - 32.4 ANC - 1,490 Platelets - 101,000. Tomorrow's the big day!!
June 29, 1999 - (Day 0) First thing today was Steve's plasma exchange. They do this to get rid of the titers in his blood that would attack the donor's marrow because she is type A and Steve is type O - this would make it harder for Steve's body to accept the new marrow. They used apheresis and took out his blood by IV then returned his red and white blood cells but gave him new plasma. This did not go that smoothly. They could not take blood through his Hickman line. This may be from the IV Itraconazole which has been known to be sticky and coat the walls of the lines. So... they had to stick him in the arm. Then he clotted in a matter seconds. And on to the other arm where they stuck him again. Almost at the end of the process they had to stick him back in the first arm again. He had to lie pretty still for 5 hours or so. Today is the day! The bone marrow arrived at 6:00 tonight. The courier told us that our donor is from Germany. When she arrived it was 3:00 a.m. her time. She was very excited to be delivering Steve's marrow and very moved to meet us. We gave her a gift and letter to give to our donor when she gets back to Germany. The nurse started the marrow infusion at 6:45 and we are hoping to finish before midnight so tomorrow will be Day 1. Otherwise be will have two Day 0's and Day 1 will be on Thursday. We kind of have our minds set that Steve's new birthday will be June 29 - the same day as his dad's birthday. Count: WBC - 420 HCT - 30.9 Platelets - 78,000 ANC - 380
June 30, 1999 - (Day 0) The marrow infusion went until 12:39 am therefore it is still Day 0. We tried to get them to crank up the speed but there is a speed limit I guess. Supposedly today is a "free" day for him - whatever that means. They took a chest x-ray this morning to look at his lungs and check out his hickman since it has been being difficult. Steve's stomach is a little tender (probably from the conditioning) and his leg hurts him for some reason - folks seem to think it has nothing to do with the transplant and think maybe he slept funny or something. They gave him a little extra potassium and magnesium today. The glands in his neck feel a little better today and his nausea has diminished. Counts: WBC - 90 HCT - 33.1 Platelets - 54,000 ANC - 50.
July 1, 1999 - (Day 1) Quiet day today and we like it like that. He started a drug called Methatrexate in the a.m. which will help prevent GVHD. Steve didn't sleep that well last night He napped a lot today. He has a blister on his toe and it is very important that we keep our eye on it because it could become a source of infection. Counts: WBC - 100 HCT - 30.8 Platelets - 54,000 ANC - 50
July 2, 1999 - (Day 2) They got Steve started on a self administered morphine pump for mouth pain. In case he needs some relief he just presses a button to receive the pain medicine. Steve is quite tired and still somewhat nauseous. He was sick this evening possibly from the morphine. With his mouth bothering him and with the nausea and fatigue he has not eaten today. He is receiving TPN (total parental nutrition) through his Hickman to keep his weight up while he doesn't feel up to eating. This is pretty much expected for most patients at some point and is nothing to worry about. Counts: WBC - 130 HCT - 31.5 Platelets - 29,000 ANC - 90 ** OK - we just had an earthquake - a 5.0 or 5.1, we are both fine but it took us by surprise being from the East coast and all. We stood under the doorways and felt the building sway. The 9th floor is not where you really want to be during a quake in my opinion. There was one last night as well a (3.0) although neither of us felt it. Just thought all might find it interesting!! **
July 3, 1999 - (Day 3) They switched Steve's Morphine to Fentanyl in case the morphine did in fact cause him to be sick. He was sick once this morning after he took a sip of orange juice with Neutra-phos mixed in. The nuetra-phos gives Steve a little more phosphorous that his body is not getting because of the conditioning. They will give that by IV now and any pill that they could change to IV form they did so Steve doesn't have to worry about ingesting too many pills. He had a bit of a temperature today 39.1 celsius. They have taken a blood draw to see if he has anything brewing. Also they changed some of his antibiotics around just in case the ones he were taking missed something. Steve did find some hair on his pillow today that has escaped his head. He did have a platelet transfusion today because his count was low. He is having a hard time swallowing and his throat hurts. He also has a headache leftover from yesterday and took some Tylenol. They are also keeping an eye on his catheter because there was a little bit of drainage from it and we need to watch out for infections. He is still very tired and just generally doesn't feel well. He should feel better when his counts come back. Today's counts: WBC - 60 HCT - 29.3 Platelets - 23,000 ANC - 50
July 4, 1999 - (Day 4) Fever went down last night and then went up a little again today. They have taken another blood culture to see if they can figure out what the high temp is from. Steve threw up once today. He is still tired but has a little more energy than yesterday. He didn't sleep that well last night but has napped some today. His throat is still rather sore and there is pain medication available as he needs it. He has also been taking some tylenol to help him feel a little better. He had the chills today once as well. Still keeping an eye on his Hickman line for infection. Steve had a nurse shave his head this morning. He went mohawk for a couple of minutes and yes there are pictures. Counts: WBC - 100 HCT - 27.7 Platelets - 30,000 ANC - 30
July 5, 1999 - (Day 5) So far nothing has come up in the blood cultures to say why Steve had the fevers. He had a fever again today in the late afternoon. They took another blood culture. It is possible that his high temp is a result of his platelet transfusion. He had his second platelet transfusion today and also needed a red cell transfusion today due to low count. His throat continues to hurt. He still swishes with his salt water solution and also has a topical numbing agent for the mouth called Dyclone. Steve has been hacking up thick mucous, blood and blood clots. I am pretty sure they told us that this is his GI track sloughing away the cells effected by the chemo and radiation so it can grow some new undamaged cells. Counts: WBC - 20 HCT - 24.5 Platelets - 19,000 ANC - 10.
July 6, 1999 - (Day 6) Steve has had a rather high fever all day- it has gone as high as 103.5 Fahrenheit. So, he has been miserable today. He has had the chills several times and whenever he has a sip of water he spits up blood. He has also had dry heaves today - usually whenever he stand up. Today is the first day Steve pretty much stayed in bed. He had a sponge bath instead of a shower and did not get out to walk at all. Because of his fever they have given him oxygen through a tube that you stick in your nose like those plugs that are supposed to stop snoring. Supposedly this was done because sometimes when people have fevers they don't get enough oxygen circulating in their blood- which is the case with Steve. They took another blood culture in the morning and changed his antibiotics around again. Then they also started him on a lipid form of Amphotericin B today which treats fungal infections and is an antibiotic - since the other antibiotics haven't brought down the fever so far. He was given several premeds and fluids to protect his kidnays from effects from the Amphotericin. He could have a fever without an infection but they are treating him as if he does have an infection just in case. A few people have shared with Steve that no matter how bad he feels today it will get worse. (Thanks for the pep talk!) The nurses have also given him ice packs to put under his armpits and at his groin area to help cool him down. Somehow that doesn't seem to help with the chills though. (Sarcasm) The doctors will watch this fever for a few days and if it does not go away then they will send the infectious disease folks in to take a look at Steve. They also took another chest x-ray. He gets his third dose of Methotrexate today. Counts: WBC - 60 HCT - 27.3 Platelets - 15,000 ANC - 0.
July 7, 1999 - (Day 7) His fever is gone and Steve feels much, much better today. He's like a different person. His mouth and throat even feel a little better. They found something in the lower part of his left lung on his chest x-rays (they took another one this morning) and his lungs are wet. It could be just fluid, a collapsed part of his lung or an infection. We don't want it to be an infection since he is already on pretty much every antibacterial, anti viral, anti fungal medicine they have. If it is a collapsed part of his lung it could be from having the fever and not breathing deeply enough while febrile. Hopefully Steve would be able to correct this problem by getting up and walking around as much as possible and breathing into his incentive sporameter throughout the day. If there is fluid in his lungs or pneumonia they would watch and wait and then possibly do a bronchostomy (sp!?) where they knock him out and then stick a tube in his lung which ejects fluid into his lungs and helps them remove a sample of whatever might be there. He isn't having any problems breathing and walked two miles today so that is good. They have given him Lasix (which induces urination) in hopes that it will help drain some of the fluid from his lung before he has a CT scan tomorrow so they can get a better idea of what they are looking at. The folks in infectious disease stopped by today. Since they don't know if Steve has an infection or not they continue to treat him as if he does. We were told to expect the folks from pulmonary to come down tomorrow as well. Counts: WBC - 40 HCT - 26.4 Platelets - 34 ANC - 0
July 8, 1999 - (Day 8) Steve had a CT scan this morning. It showed that his lung was collapsed a little and there was fluid in them. The Dr. feels that the fluid is merely fluid gain from all the liquids they pump into him all day. They will try to work at taking away some of the fluids he might not need anymore (for example they DC'd his Ativan since he hasn't been having any nausea) and he will work at taking more fluids in by mouth. They gave him another diuretic today called metolazone to try to help get rid of excess fluid. Also, Steve will keep walking and breathing into his incentive sporameter to improve his lung strength. The thing that has the Dr most interested now is the rashes that Steve has. He has a sunburn type rash on his face, arms and chest and a bumpy red rash on his back, abdomen and legs. It could be a reaction to the radiation, an allergic reaction to one of his many drugs or very early GVHD. The Dr. seems to think that is most likely not Graft vs. Host Disease as there are not any signs of graft and it is hard to have Graft vs. Host Disease without the actual graft. We need his counts to come up and then we will start thinking about engraftment of the donor's marrow. The blister on Steve's toe is also getting uglier and they will be keeping an eye on it daily. Counts: WBC - 40 HCT - 31.7 Platelets - 29,000 ANC - 20.
July 9, 1999 - (Day 9) Last night Steve had the chills for 15 minutes and vomited after trying to cough up a blood clot. Nothing really new today. Steve has had a slight fever on and off today. He feels pretty good. They continue to give Steve Lasix to encourage frequent urinating to get rid of some of the fluid weight. He did weigh 2.6 lbs. less today so that was good. The lining of Steve's nose has got really irritated and they gave him a nasal mist of saline that will soften the mucous membranes. The rash on his hands has become somewhat painful like sunburn. Counts: WBC - 30 HCT - 31.9 Platelets - 28,000 ANC - 0.
July 10, 1999 - (Day 10) Steve's throat is still bothering him - especially when he swallows. They seem more sure today that his skin rash is GVHD of the skin and have started Steve on steroids (Prednisone) to treat it. The GVHD could also possibly be the source of Steve's high temps. He had high temperatures today as well. He also got a platelet and Hematacrit transfusion today for low counts. His platelets were especially low earlier today. His lungs sounded nice and clear to the docs today. They feel they have effectively dried out his lungs by using the diuretics. Steve's heartbeat sounded irregular to one of the nurses today so they did an EKG. The EKG showed premature arterial beats (pretty sure that is what they said) and is from all the diuretics Steve was taking that have dried everything out and is not a problem. Counts: WBC - 30 HCT - 26.2 Platelets - 5,000 ANC - 10.
July 11, 1999 - (Day 11) Quiet day. Steve ate a little solid food today and yesterday, mostly peach slices. Steve thinks that his Strabismus (weakening of the muscles that control eye movement) is acting up. His stool output has increased and could be from the GVHD, an infection or possibly just from putting more in his mouth food and drink wise. As always they will look out for infections. His rash seems a little better today from the steroids. Counts: WBC - 50 HCT - 24.3 Platelets - 20,000 ANC - 0.
July 12, 1999 - (Day 12) Uneventful day. Last night Steve got Platelets and red cell transfusions for low counts. Yesterday was also his last day of methotrexate. Steve had pancakes for breakfast this morning if you can believe it! A doctor will probably come see about Steve's eyes soon. His ankles are getting itchy, it is the rashy skin peeling off so he will get more itchy before all is said and done. The radiation burn on his hands has been hurting more. His nose, eyelids and lips have been more painful as well. His Creatinine level was up a little today indicating elevated kidney function. This is a result of all of the drugs they are giving him and should return to normal when he is finally off a lot of these drugs. His eyes are definitely yellowing as a result of a high bilirubin level (from elevated liver function) - once again this is expected with all the meds. he is on. Overall the doctors continue to be pleased. Counts: WBC - 80 HCT - 34.0 Platelets - 47,000 ANC - 0.
July 13,1999 - (Day 13) Steve's hands and feet are really hurting him today. This is a result of the chemo and radiation, no one knows why it affects the skin of the feet and hands so much more than the skin in other areas but it does. His feet only hurt when he is on them so that is not too bad but it will limit the amount of laps around the floor that Steve can do. His hands hurt constantly and nothing completely takes away the pain. They have changed his pain meds. to continuous IV so he will get relief while sleeping and won't be too far behind the pain upon awakening that he can't catch up. He has also been icing the painful areas of his hands. He had another CT scan today that came back normal. (yay!) The eye doctor stopped by to see Steve last night and is not worried about his eyes. He thinks (say it with me now) that once he is off all the drugs that his eyes will return to normal. They took Steve off one of his blood pressure meds. today because they would actually prefer his blood pressure to be a little higher in order to increase the blood flow through the kidneys. Steve's hands are somewhat shaky and have been from the Cyclosporine (preventative drug for GVHD). He is experiencing some disorientation from the high dose steroids but this seems to be minimal so far. Counts: WBC - 40 HCT - 33.0 Platelets - 23,000 ANC - 20.
July 14, 1999 - (Day 14) Quiet day. Steve's hands still really hurt and his foot pain kept him from walking. They have upped his pain meds. and he slept a little more today. Steve is back on his blood pressure med. because his pressure had gone up high enough. His mouth continues to feel better everyday. Tests show his kidney and liver function slightly improved. They switched his Acyclovir from IV to a pill, he will be on it for a year to prevent the chicken pox virus from becoming active until his immune systemis fully recovers. He got a platelet transfusion today as well. Counts: WBC - 30 HCT - 35 Platelets - 18,000 ANC - 10.
July 15, 1999 - (Day 15) Steve's lips and uvula (that thing hanging down in the back of your throat) have started to really hurt him again. His hands and feet continue to bring him a lot of pain although his hands look a lot less swollen today. The people from pain and toxicity visited Steve today and upped his dose of pain meds. They will be checking in on Steve everyday to see how he is doing - if he needs more help controlling pain or if he is too sleepy from the drugs. The skin around his eyes is a lot less red but is dry and starting to flake. He has been having some back spasms. Supposedly when he drinks cold beverages is when it happens. The Dr. suggested that he not drink cold beverages. Anyway... He has some hemorrhaging in his eyes from the low platelets and rubbing his eyes. He did not walk again today because of foot pain and the nurse has arranged for a physical therapist to visit Steve. Counts: WBC - 60 HCT - 34.5 Platelets - 29,000 ANC - 20.
July 16, 1999 - (Day 16) First thing this morning Steve vomited mucous up from his stomach. So far it seems to be an isolated incident. Steve's skin GVHD continues to improve as does his kidney function. He had a platelet transfusion today, his count was especially low. He appears to feel better with the higher dose of Fetanyl although he does seem sleepier. His hands continue to look a little better each day. The physical therapist came today and went over some stretching and resistance exercises with him but that was about it. Someone will be coming tomorrow as well since his foot pain is still preventing him from doing much walking. I took a class today that shows you how to run hydration, TPN and medication into his Hickman line once we are outpatient - hopefully we will outpatient within a couple of weeks! Counts: WBC - 80 HCT - 32.9 Platelets - 8,000 ANC - 30.
July 17, 1999 - (Day 17) Steve's hands feel a little better and his lips feel a bit worse. It still hurts to swallow and walk. His ankles are somewhat swollen. His skin GVHD is improving. They gave Steve Nifedipine to lower his blood pressure quickly as it continues to be high from the steroids. They tried Steve on a new pain med. - Dilaudid - but it did not help. Counts came up a little today: WBC - 100 HCT - 32.3 Platelets - 22,000 ANC - 40. **Our nurse just told us that they found something in one of Steve's blood cultures. They think it is a bacterial infection called Gram Negative Rod. Supposedly this is why Steve has been having some chills. He will not show a fever because the steroids will keep his temperature down. The doctors have switched his antibiotic from Imipenem (sp?) to Ceftazadine in the hopes that this will stop the infection.**
July 18, 1999 - (Day 18) Last night Steve's skin showed many bruises. We are not sure why but they did give him another platelet transfusion in case the cause was low platelets. He also had another platelet transfusion today. They did a skin biopsy (yes, it hurt) on one of the bruises on his arm to check and make sure that they are not missing anything as far as infection goes. The particular kind of bug they think Steve has could be related to the Hickman catheter and if three consecutive blood cultures show the infection they may pull the Hickman and have to put a new one in somewhere else. Let's hope that the antibiotic works and this is not an issue. His legs and feet appear to have gotten more swollen since yesterday. The physical therapist stopped by again today. He had another routine chest x-ray today. The Pain and Toxicity folks had taken Steve off his continuous Fetanyl IV drip and were giving him a pill form of Diluadid. This did not seem to be working as his pain had increased so they put him back on the IV drip of Fetanyl. He still has his PCA pump (self administering) for when he needs it which is frequently. His counts continue to slowly climb: WBC - 140 HCT - 30.2 Platelets - 41,000 ANC - 70. ** We finally have transplant pictures up on the web page. ** To see them go here.
July 19, 1999 - (Day 19) Steve's weight continues to climb and his feet and legs are still very swollen. Both are side effects of the many medications that Steve is on. He has developed something called capillary leak syndrome from all the drugs he is on that allows fluid to leak out of the capillaries and causes swelling and makes it hard for the weight to come off. Steve was able to walk 1/2 mile today with his feet and lower legs bandaged with Ace bandages. Steve continues to apply ice, lotion and a numbing agent to his painful lips. The doctors feel that they have Steve's infection under control. Kidney function is doing better today than yesterday. He had another Platelet transfusion today as they are trying to keep his count up to more like 50,000 than the normal cut-off for transfusion which is 20,000. Everyday they take blood from Steve to make sure that his potassium, antibiotic and Cyclosporine are at acceptable levels. Counts are still slowly creeping up. They will consider Steve engrafted when his ANC is 500. Counts: WBC - 180 HCT - 30.1 Platelets - 43,000 ANC - 90.
July 20, 1999 - (Day 20) Steve got platelet and red cell transfusions today because of low counts. His ANC went down and his WBC held steady and come to find out that Steve is a slow engrafter. If he does not engraft by day 28 than he would be considered a late engrafter. They will do a bone marrow aspiration at day 28 whether he has engrafted or not. The concern about engrafting slowly is that you are extremely open to infections when your counts are so low and extending the time you are without enough white blood cells to fight infection extends the time that you are not well protected from infections. There is talk of starting Steve on a Growth Factor which would help the cells grow and multiply faster. This would be needles given probably in the stomach for a few days. We may know more tomorrow what has been decided. The folks at Pain and Toxicity have played with Steve's pain meds. again. They have taken him off the continuous IV drip of Fetanyl and are giving him oral Methadone during the day. He will have the continuos IV at night and also will keep his PCA pump for shots of pain medication when he needs it. So far he feels worse on the Methadone. He actually just had the chills and the nurses have drawn a blood culture to check for infection because his temp. is also high for someone on steroids. Counts: WBC - 180 HCT - 25.1 Platelets - 32,000 ANC - 30.
July 21, 1999 - (Day 21) Steve threw up a couple of times today. He also had several bouts of the chills. They gave Steve an extra pill to get his blood pressure down. He is very thirsty today but could not drink anything fast enough to quench his thirst. He has been feeling cold and started wearing a knit hat on his head to keep the warmth in. They are supposed to start him on the Growth Factor today and will keep him on it until his ANC is 5,000. He received platelets today. The inside of his lips is really causing him pain but is actually starting to look better. They are taking him off the continuos Fetanyl again and will continue with the PCA pump and oral Methadone for pain. Counts: WBC - 250 HCT - 29.7 Platelets - 22 ANC - 30.
July 22, 1999 - (Day 22) Steve is feeling a bit better today than last night. Steve's doctor asked about Steve's state of mind today as emotions can have a profound impact on healing and they are treating the whole person here. There is a psychologist availble to Steve and he may come in tomorrow just to talk to Steve and see how he is doing. The nutritionist was in to talk to Steve about eating more. She suggested taking Ativan before meals to ward off any nausea. Steve seems to be doing ok with the pain med. situation so they lowered his dose on the PCA pump. His ANC has come up a little with the Growth Factor which is good and he will be getting another shot of it tonight. His kidneys continue to do well. His weight is down around 3 pounds from yesterday and the swelling in his feet and ankles has gone down a little. Counts: WBC - 250 HCT - 26.2 Platelets- 17,000 ANC - 110.
July 23, 1999 - (Day 23) Today they tapered Steve's Prednisone a little and switched it to oral form. They also took him of the amphotericin anti-fungal and put him back on the oral Itraconazole liquid anti-fungal. Steve doesn't care for the Itraconazole so we will see how it goes. There has been talk that Steve will be out of the hospital by next Friday if everything continues to go well. They also gave Steve a drug today called Ursodiol that will help get the sludge (yes that is the medical term) out of his Gall bladder which in turn will help lower his bilirubin level and improve his liver function which has been a little on the high side. Steve received platelets and red cells. Check out Steve's ANC- it is finally over 500. Counts: WBC - 710 HCT - 25.6 Platelets - 23,000 ANC - 580.
July 24, 1999 - (Day 24) Good day today. Steve had several hours when he was not hooked up to anything and we walked over 2 1/2 miles. The doctor's biggest concern today was the extra fluid and swelling of Steve's feet. Supposedly eating meals and walking will help to get rid of the fluid. His liver function was much better today. Steve received platelets as he was low. They continue to taper Steve's PCA pain medicine as he is feeling a lot less pain. As you can see Steve's counts are climbing up there. The doctor said today that he will stop the growth factor shots when Steve's WBC reaches 10,000 and then the count will probably drop down to a respectable 5,000. Counts: WBC - 2,010 HCT - 27.8 Platelets - 13,000 ANC - 1,650.
July 25, 1999 - (Day 25) Everything is looking good to leave the hospital on Wednesday. Steve is taking all meds. by mouth except for the two antibiotics he is on that will be finished on Wednesday. He also has said good-bye to his pain med. pump as he doesn't need it any more. Counts are looking real good: WBC: 4,110 HCT - 28.6 Platelets - 24,000 ANC - 3,250.
July 26 - July 29, our Internet provider had some problems with their service in Seattle and was out of service for a few days. We apologize for the delay of postings due to these problems.
July 26, 1999 - (Day 26) Today we met with a few folks from the nutrition department to briefly discuss our upcoming discharge from the hospital and what we will be expected to keep track of (such as calories, protein and fluids). We can also get some supplies from the Nutrition Department such as a blender to process easy foods for me to eat. A transition nurse also stopped by and will be meeting with us again tomorrow to discuss topics such as classes that she recommends to be taken over again and possibly some extra training with our new pump. She will also go over the proper technique for giving and recording medicines that I will be taking. It could become a very complicated task since some meds. need to be taken with the meal, some have to be taken before or after the meal. Then there are those that cannot be taken with any food. The rash on my legs is being looked at more closely now. It is thought that it may be a flare up of GVHD of the skin. A skin biopsy was done today on the inside of my right leg and those results are expected back tomorrow afternoon. If the results come back positive for GVHD of the skin, they might treat it with PUVA light (an ultra violet radiation which disables the attacking T-cells). The steroids have also been switched back to IV form and went back up to the original amount they were giving me until the results come back. The Growth Factor shots are being stopped today also since they could possibly be a cause of the rash. The current counts are high enough so that there is no worry about one of these counts dropping too low after stopping the shots. None of these events are expected to delay the discharge. My platelets were low again so I received two bags of platelets today. There was also a bout of bleeding today as I changed my ostomy bag today only to find it bleeding quite more than normal. It could be just from the low platelet count, but it still shook me up. By the way, my weight is up to 195.6. The counts continue to impress: WBC - 7,950 HCT - 30.2 Platelets - 13,000 ANC - 5,960.
July 27, 1999 - (Day 27) Steve is eating very well, he had a cheeseburger and Reese's Peanut butter cups for lunch. They took him off the IV Total Parental Nutrition last night because they feel he will be able to get enough calories by actually eating. Yesterday he consumed 2179 calories. Nurses report that Steve had some confusion last night but are not overly concerned about it. His legs look a little less red today but the rash seems to have spread farther up his legs and possibly to the back of his hands. Both his hands and legs hurt more today. Wearing Ace bandages on his legs seems to help a little with the swelling. They tapered his pain med. (Methadone) a little today because he has been a little sleepy from it. A transition nurse met with us and went over planning for Steve's discharge and will return tomorrow. We also learned today that Steve's bone marrow aspiration will be postponed possibly up to a week because they want to wait until he is off the Growth Factor for a while to get accurate test results. Steve had a platelet transfusion today. We have heard that the skin biopsy was indeed positive for GVHD but have not talked to the doctor about it yet. There is talk of Steve receiving IV steroids on an outpatient basis every 12 hours which sounds like a pain but hopefully we will talk to the doctor soon and clear things up. His excellent Counts: WBC - 11,610 HCT - 29.6 Platelets - 45,000 ANC - 9,170.
July 28, 1999 - (Day 28) Discharge Day!!! We're going back home to our Seattle apartment today. Steve's rash on his legs looks better but the biopsy does show positive for GVHD of the skin. His legs and feet also continue to be swollen and his weight continues to rise. Steve is receiving extra magnesium - as the drugs he is on are affecting his magnesium level. We have met with many people today to discuss the plans for outpatient care. Steve will be sent home with many, many drugs and medical supplies. It is a beautiful sunny day out here in Seattle and we are raring to be set free, although it is sad to leave all the doctors and nurse who have literally saved Steve's life. We are forever in their debt and will never forget the kindness and competence that we have been shown. His counts were a bit lower today since the growth factor shots have been discontinued: WBC - 8,190 HCT - 25.2 Platelets - 55,000 ANC - 6,390.
July 29, 1999 - (Day 29) - Our first day as outpatient started off pretty busy as we had to get up quite early to get ready for the day. We had to prepare Steve's medication schedule for the day, take care of his hickman catheter dressing, program his IV pump for his hydration among many other tasks before getting to the clinic for 9:00. At the clinic, Steve started by having a blood draw followed by a transfusion of red blood cells. Later Steve also had a platelet transfusion received some IV potassium. We also met with our nurse, primary physician (who will be rotating out this weekend), and nutritionist. There was also talk of the GVHD of Steve's skin getting worse and a possible treatment plan. However, we had not yet met with our new attending physician who would be making these calls and discussing plans with us. Someone came to meet with us about a new research study that currently includes only one other marrow transplant patient. We were told information about Steve's condition that indicated it was much worse than reported earlier. We were told that Steve had GVHD attacking organs other than just the skin and that the survival rates were quite low for his current condition. All of this information was totally new, shocking and obviously upsetting to us. We finally got to meet with our attending doctor and expressed our concern and disappointment over the communication situation in which we were hearing a worse case fatalist scenario from someone we did not know and who should not have been giving us the information that he did as some of it was erroneous and some of it just exaggerated. He reminded me of a vulture swooping around and waiting for the kill. The bottom line right now is that Steve's GVHD of the skin is responding poorly to the steroid treatment and another antibody treatment (Mycothenolate mofetil - MMF) will be used in addition to the steroid use for treating the GVHD. Eventually they would like Steve off the steroids after a long taper. Steve's skin is the only organ known to be affected by GVHD right now. Other than the swelling of his legs and feet and GVHD of his skin, Steve is still doing physically well. It is important to get Steve's GVHD under control as soon as possible and hopefully the MMF antibody will do just that. Counts: WBC - 8,550 HCT - 26.2 Platelets - 34,000 ANC - 7,610.
July 26 - July 29, our Internet provider had some problems with their service in Seattle and was out of service for a few days. We apologize for the delay of postings due to these problems.
July 30, 1999 - (Day 30) Pretty slow day. Steve's only appointment was for a routine blood draw. I talked to Quality Control and our social worker about our concerns we had from yesterday and communication. Steve felt a little nauseous at breakfast and took an Ativan. His drug Cyclosporine level was a little on the low end of normal so they have upped his dose. Just for fun here is a list of medications that Steve is currently taking: Atenolol for high blood pressure, Prednisone to fight GVHD, a multivitamin without iron, Cyclosporine which helps prevent GVHD, Valcyclovir to prevent reactivation of the chicken pox virus, Norvasc for high blood pressure, Prilosec for acid reflux, Methadone for pain, a magnesium supplement, Itraconazole to prevent fungal infections, the MMF antibody to fight GVHD and will eventually start taking Bactrim which is an antibiotic. Also he is receiving some magnesium and potassium by IV and having his catheter lines flushed daily with saline to clean them and heparin to prevent clotting. Counts: WBC - 8,590 HCT - 33.1 Platelets - 55,000 ANC - 7,220.
July 31,1999 - (Day 31) Down to the clinic for Steve's daily blood draw and a clinic appointment with the weekend doctor. Steve had a blister on his toe that popped while walking to the clinic and the doctor gave Steve some Fetanyl for pain and cut off the skin that used to be the blister. Bacteria would have really loved to set up shop there between his old an new skin. His new skin looked good and not infected. It was very painful to Steve to have the air hit the raw skin on his toe. They will change the dressing on his toe tomorrow at his clinic visit. We think that his GVHD of the skin is at the very least not progressing and possibly has slightly improved, but we are not sure. Steve received platelets today - it seems to be an every other day thing so that is not too bad. So far I have been busier as caregiver with Steve home- but I am starting to develop a daily schedule. I escort Steve to his appointments and blood draws and stay with him during his transfusions (although I could run errands instead if needed). I give Steve IV fluid with a portable IV pump that is actually pretty simple to use and flush his ports on his hickman everyday. I change Steve's Hickman dressing daily and it takes less time everyday. We take Steve's temperature twice a day - once a.m. - once p.m. I dole out his medication 6 to 7 times a day (totaling over 40 pills plus some fluids). I nag him about hand washing, eating, eating more protein, drinking fluids, exercising, taking care of his mouth and just in general what he should and should not do if he forgets (lucky him, huh?). I do a light cleaning everyday of high risk areas in the house - bathroom, kitchen, etc. I will just overall clean the apartment once a week like I would in normal life. I change dishtowels and cloths daily as well as sanitizing the sponges. There is also a bit of laundry. Steve records daily on a sheet everything he puts in his mouth so that the nutritionist knows if Steve is getting enough calories, calcium, protein and fluids. That is a caregiver job but Steve has taken it over. It may sound like a lot but is overall pretty manageable. Counts today: WBC - 7,780 HCT - 33.4 Platelets - 41,000 (ANC - ?).
August 1, 1999 - (Day 32) Went for the usual morning blood draw and then back home. We had a clinic visit with the weekend doctor in the afternoon. Nothing really new. They re-bandaged Steve's toe where the blister was but still think it looks fine and infection free. They will look at it again at tomorrow's clinic. Steve has lost 10.2 pounds in the past 3 days and with the weight loss he has also lost a lot of the fluid and swelling that he had been carrying around, so it seems to be a good thing. They are also starting to slowly taper Steve's pain medication. No transfusions today! Counts: WBC - 6,080 HCT - 33.1 Platelets - 57,000 ANC - 5,840.
August 2, 1999 - (Day 33) Had another daily blood draw this morning. We were scheduled to have an afternoon clinic visit with our nurse, primary physician and attending physician. We received a call informing us that we were to get a platelet transfusion after the clinic visit. During the clinic visit they checked out, cleaned and dressed the blister on my toe. I was told that my sodium was on the low side so I need to increase my salt intake a bit. The skin on my upper body has shown improvement and the skin on my legs is still somewhat red but not any worse. Considering that we are only a few days into taking the MMF, this is good news. Use of MMF often wont show positive results for up to ten days or longer. My potassium is also on the low side and I am now getting more potassium via my IV pump for at least a day or two. My weight is continuing to drop and drop. Mostly this is still from getting rid of excess fluids. Today, I lost another 4 pounds. In total, I've dropped from 198 to 184 in about 4-5 days. Counts: WBC - 4,970 HCT - 30.6 Platelets - 38,000 ANC - 4,420.
August 3, 1999 - (Day 34) Just a morning blood draw and check in with a Hutch psychiatrist. We are continuing to taper Steve's pain meds. Counts: WBC - 8,010 HCT - 31.8 Platelets - 83,000 ANC - 7,450.
August 4, 1999 - (Day 35) Only a blood draw in the morning. There's still swelling in the lower legs and feet but all looks pretty good. The broken blister on my toe still looks clean. We will be meeting with someone from nutrition tomorrow and having our next clinical visit on Friday to check out the GVHD of the skin. The next bone marrow aspiration is also scheduled for this Friday. Joy! Counts: WBC - 6,270 HCT - 30.6 Platelets - 58,000 ANC - 5,710.
August 5, 1999 - (Day 36) Blood draw in the morning and a visit with the nutritionist. Steve is taking in enough fluids and calories but needs to work on getting more protein. You should have seen the nutritionist's eyes light up when she found out Steve had salmon for dinner last night! His weight is still dropping (181) so we are keeping an eye on it. Steve received a platelet transfusion today. While getting his platelets he had many visitors: our Blue team nurse checked in on us, one of the folks working on the study of one of the drugs (Itraconazole- anti fungal) Steve is taking came by to talk with him because he is considering dropping out of the study due to the nausea he experiences before and during the taking of the drug, and the fact that it is three times a day on an empty stomach which can be quite difficult. Steve's biggest concern is any medical problems switching to Fluconazole which is the standard treatment now that he has already been on the Itraconazole for some time. The doctor sees no issue with this but Steve will wait to speak with his new Attending next week before making a final decision. Our pain and toxicity fellow came by to check on Steve and instruct us on how to continue the taper of Steve's Methadone. Steve's hands are getting a a bit more dry but will be checked out during tomorrow's clinic visit. Counts: WBC - 5,580 HCT - 29.6 Platelets - 34,000 ANC - 5,250.
August 6, 1999 - (Day 37) Blood draw and a brief chat with our social worker in the morning. Steve's bone marrow aspiration went rather well today and we should have results in about 7 - 10 days. Then we will know how much leukemia is left - none would work for us - and how much of the marrow is donor marrow - the higher this number the better! Steve had a clinic visit today. His magnesium level is good and his potassium is passable. When he can get better numbers he can stop receiving IV fluids because right now the only reason he receiving IV fluids is as a carrier for the potassium and magnesium. His weight today was 183.3. Both his creatinine and bilirubin are looking better (tests of kidney and liver). His skin rash was pronounced not worse and possibly a little better. If it continues to get better then they will start to taper his steroids. If it gets worse or not any better they may wish to add another drug. His toe looks fine with no signs of infection. The nurse is encouraging Steve to walk and exercise more to combat the muscle loss that comes with taking high dose steroids. Counts: WBC - 5,770 HCT - 28.4 Platelets - 62,000 ANC - 5,250.
August 7, 1999 - (Day 38) Only a blood draw today in the a.m. We took a little walk to the store today - farther than he has walked since he was discharged. He did get a little winded on the hill. Platelet transfusion in the afternoon. Weight today was 182.6. Counts are all a bit lower today- not sure if that means anything: WBC - 3,860 HCT - 26.6 Platelets - 36,000 ANC - 3,320.
August 8, 1999 - (Day 39) Another blood draw today but no transfusions. Tomorrow will be a busy day with a clinic visit, chest x-ray and visit with the nutrition department. We will be meeting with our new Attending Physician to discuss my case. My weight seems to be stabilizing and today was 183.4. Counts: WBC - 3,980 HCT - 26.8 Platelets - 59,000 ANC - 3,700.
August 9, 1999 - (Day 40) Blood draw in the morning and learned Steve would need a red cell transfusion in the early afternoon. Everyone was late for our clinic except for us. We met the new attending today. Everything looks pretty good - the GVHD is not worse and possibly is a little better. I swear that is what they say every time! Steve has been feeling a little bloating in the evenings so our Primary doctor wrote a prescription for something to help with the gas. They have lowered Steve's dose of Prednisone from 140 to 100 mg twice a day. Hopefully it will be as effective with fewer side effects. Because the Prednisone was lowered and his Cyclosporine level was on the low end of normal they have upped his dose of Cyclosporine from 450 to 474 mg twice a day. Steve also dropped the anti fungal drug Itraconazole and has replaced it with Fluconazole. The new attending also took Steve off the Norvasc and Atenolol and put him on Labetalol in the hopes of better controlling his drug related hypertension. Steve had a chest x-ray today, they will be taken weekly. Saw the nutritionist again and fluids and calories were both good. Still need to work on getting a bit more protein. She has said since everything looks pretty good we can stop recording everything that Steve ingests. He will add skim milk powder to his milk and that should boost his protein up high enough. After Steve's blood transfusion they gave him some more Lasix (diuretic) in the hopes of helping Steve to lose some of the fluid he still carries around in his feet and legs. He has been tired lately but hopefully the transfusion will help. His hands have also started to hurt pretty bad again. It hurts him to crumple up a piece of paper in his hands or get his wallet out of the pocket in his bag. Counts: WBC - 5,220 HCT - 27.4 Platelets - 61,000 ANC - 4,330 Weight - 180.3.
August 10, 1999 - (Day 41) Blood draw in the morning and a platelet transfusion in the afternoon. Steve's parents arrived today for a 8 day visit - yeah, company! The folks at pain and toxicity have prescribed a new pain med that is faster acting than the Methadone to take as needed to help with Steve's hand pain. Counts: WBC - 5,550 HCT - 34.1 Platelets - 44 ANC - 4,880 Weight - 178.5.
August 11, 1999 - (Day 42) Morning blood draw and also an appointment with oral medicine. They prescribed fluoride for Steve to help strengthen his teeth since he is lacking saliva which usually helps wash the bacteria away and prevent cavities. His mouth has white patches in it which means he does have GVHD in the skin of his mouth. This does not mean that he has gut involvement though. We reattended the food safety class with Steve's parents today. They are cooking dinner tonight! Counts: WBC - 4,670 HCT - 31.4 Platelets - 47,000 ANC -4,340 Weight - 177.9.
August 12, 1999 - (Day 43) Another blood draw followed by a clinic visit with our team. My biggest complaints to the team were increased shaking of the hands and the constant feeling of being cold. There is little to be done about the shaking since it is most likely from many of the medications I am on. They will be checking out my thyroid gland to see if I am feeling cold because because it is not releasing enough hormones as it may have gotten used to the steroids releasing hormones and is now not doing its job properly. If so, the problem should be taken care of easily. We started the steroid taper and the GVHD of the skin has gotten more red over the past day or two and a bit dryer. The team will be keeping a close eye on this. It was also discovered that one of my kidney function tests (creatinine) was a little high but it was unsure why since I've have been doing so well with my fluid intake. The other piece of information that was passed on to us today was a change in my liver functions. My bilirubin has been on the rise for a few days and some other liver tests have been elevated indicating that the GVHD has indeed progressed to the liver. Again, the team will be keeping a close eye on this as this can be a very serious and life-threatening condition. One piece of good news is that I still have an appetite. The new hypertension drug I have been given, Labetalol, also possibly can effect the liver function, so that medication will be changing also. The team will be checking the level of MMF in my system to verify that I am absorbing the right amount of medication. We will also start administering at least one dose of steroids via IV to see if the absorption is any better. Counts: WBC - 4,820 HCT - 30.6 Platelets - 35,000 ANC -4,240 Weight - 179.3.
August 13, 1999 - (Day 44) Blood draw and IV steroids in the morning. A platelet transfusion in the afternoon. The team made a couple drug changes based on the results of blood levels that they took this morning. His Cyclosporine level was rather high so he is skipping two doses and then dropping from 475 mg twice a day to 350 mg twice a day. Hopefully this will be easier on his organs and possibly help with his hand shakiness. His MMF level on the other hand was low so they have upped his dose to 1.5g twice a day. They can not conclude that the MMF is a failure if he was not receiving the right dose of the drug so we will watch and see. Counts: WBC - 4,680 HCT - 31.1 Platelets - 25,000 ANC -4,210 Weight - 178.8.
August 14, 1999 - (Day 45) Blood draw and IV steroids in the morning. We also saw a weekend doctor because two toes on Steve's left foot were mysteriously bruised dark black and purple. His platelet counts were fine so hopefully we will just watch his bruises fade and go away. We also asked again if there is anything that can be done about Steve being so cold all the time. He has been walking around with a winter hat on and has requested gloves. It is really having a negative effect on his day to day quality of life although we know it has no impact on the big picture. Counts: WBC - 3,370 HCT - 29.3 Platelets - 42,000 ANC -3,130 Weight - 176.8.
August 15, 1999 - (Day 46) Just another blood draw and IV steroids. No change in my toes but there isn't a lot of concern there either. We continue to try to combat the constant coldness I am feeling but are having little success. It also seems to be taking a lot of his energy away which is limiting my exercise and other daily tasks. Counts: WBC - 4,110 HCT - 29.3 Platelets - 35,000 ANC -3,940 Weight - 174.5.
August 16, 1999 - (Day 47) Blood draw and IV steroids in the morning. Platelet transfusion in the afternoon. We saw our primary doctor and he gave us the good news that Steve's Bilirubin (liver) level is lower than it has been since 7/22. This was our biggest concern and our doc was very glad as were we to hear the news. His kidney function is still somewhat elevated but manageable. Counts: WBC - 3,260 HCT - 28.3 Platelets - 30,000 ANC -3,160 Weight - 174.2.
August 17, 1999 - (Day 48) Blood draw and IV steroids in the morning. We had a clinic this morning as well. Steve is experiencing more nausea of late which could indicate GVHD of the gut and GI track. The more organs involved the more serious the GVHD is considered. His Attending Physician feels his status has probably gone up from Stage 2 to somewhere closer to Stage 3 (Stage 4 being the highest and most severe). He is experiencing this much trouble with GVHD due to a mismatched donor - which says once again to me that not enough people are signed up in the National Marrow Donor Program registry. A better match would have made for smoother sailing for Steve. If you are not yet signed up call 1-800-MARROW-2 for more information. They are not sure why Steve's Creatinine level is up and have taken a blood test to find out more of what is going on with the kidneys. We did get some results back from his aspiration. He is free from leukemia and has no Philadelphia chromosome (the marker for CML). He also has 98.4% donor cells which is pretty much why he is leukemia-free. Another measure which is of how much bone marrow is being produced in the bones is a bit low at 70% of normal but it will take time to improve. The unfortunate thing in light of all the good news is that Steve asked his doctors for confirmation of the seriousness of the GVHD and it is indeed of serious (potential life threatening) concern. It is hard to manage GVHD and not have the blood counts go down as a result of the treatment, at which point Steve would be susceptible to infections. Not enough GVHD medications and then the GVHD gets out of control and can do some serious damage. It is a balancing act at best. If the GVHD condition does not improve over the next couple of days, we will be looking at least at two other options for treatment. Counts: WBC - 3,640 HCT - 27.8 Platelets - 45,000 ANC -3,350 Weight - 172.8.
August 18, 1999 - (Day 49) Blood draw and IV steroids in the morning as well as a visit with the nutritionist. We need to watch Steve's input as he has been eating and drinking somewhat less. They have taken Steve off Cyclosporine (preventative GVHD drug) and are now trying something called FK506 which is another preventative drug for GVHD. They made the switch because his kidney function level (creatinine) is up and red cells were being destroyed (I think) because of this and they think this other drug may help with that problem. They have also lowered his evening dose of MMF (GVHD treatment) from 1.5 g to 1 g because his WBC and ANC have gotten rather low and MMF is one of the drugs that suppresses the immune system and he needs a functioning immune system to fight off infections. They are also upping his hydration from 1 to 1.5 liters to help flush out the kidneys. Counts: WBC - 2,450 HCT - 26.5 Platelets - 34,000 ANC -2,180 Weight - 174.4
August 19, 1999 - (Day 50) Blood draw and IV steroids in the morning. Also a quick check up with the nurse. They are adding Norvasc to Steve's drug list as the Carvedilol was not completely controlling Steve's blood pressure. He also had a visit with a Hutch psychiatrist who has suggested a drug that will help Steve feel more energetic and motivated (heck, I wouldn't mind some of that myself!) His kidney function remains high. Because of this the doctors are stopping the FK506 in hopes that the creatinine level will go down. For the same reason they also are stopping his antibiotic and have halved his dose of Fluconazole (anti fungal drug). He had Platelet and red cells transfusions in the afternoon and evening. His blood pressure got real high when they were giving him the blood and they had to stop his hydration which was running at the same time. They also gave him a blood pressure med. that brings your blood pressure down really quickly. We stayed for a while so they could keep an eye on Steve. We were at the clinic from 2:30 to a little after 9 pm. Counts: WBC - 2,810 HCT - 27.2 Platelets - 28,000 ANC -2,440.
August 20, 1999 - (Day 51) Blood draw and IV steroids in the morning. Our primary doc met with us unexpectedly in the a.m. to discuss concerns over Steve's kidney function. They are definitely keeping him off the FK506 to see if doing so improves the kidney function. If it is indeed the drugs that were increasing his creatinine then we will have to try another GVHD antibody treatment called ATG if there is a flare up of the GVHD. If no flare -then we will keep off cyclosporine and FK506 and not need to add anything new to the mix. We are also holding off on the prednisone taper in the hopes that doing so will help to prevent a flare up of the GVHD. We are back to tracking Steve's calorie, protein and fluid intake. We will also be measuring output (if you know what I mean) as both sets of information will help to give the docs a better picture of the kidneys as well as Steve's weight loss. They have also upped Steve's Norvasc from 5 to 10 mg to try to control his blood pressure which remains high. He had a chest x-ray today per his doctor's request. He has not felt nauseous since before yesterday, so that is good. He is finding his vision is somewhat blurred and the docs are suggesting Prednisone as the culprit. They will keep an eye on him and will perform neurological tests if it gets worse. His legs and muscles continue to be weaker, making it harder to get back and forth to the clinic each day. Counts: WBC - 3,290 HCT - 33.5 Platelets - 35,000 ANC -3,160 Weight - 168.6.
August 21,1999 - (Day 52) Today is actually the 2 year anniversary of my diagnosis of CML. I have a little more energy today and feel better than I have in a few days. We are actively monitoring my fluid and solid input and output which have been good. My vision has also improved. Platelet transfusion in the afternoon. Counts: WBC - 3,390 HCT - 33.5 Platelets - 31,000 ANC -3,250 Weight - 169.6.
August 22, 1999 - (Day 53) Blood draw and IV steroids in the morning. Nice quiet day with only one trip to the clinic. Counts: WBC - 3,190 HCT - 30.8 Platelets - 36,000 ANC -2,810 Weight - 168.5.
August 23, 1999 - (Day 54) Blood draw and IV steroids in the morning. We also had a surprise clinic this morning to get us on a schedule of MWF for clinics with Steve's health care team. Steve's Creatinine level is better (function of the kidney). They are restarting the FK506 and the Bactrim (antibiotic) and have gone back up to two Fluconazole (anti fungal) a day as they feel that they have found the culprit that was affecting his kidneys - the Cyclosporine. They have also upped one of Steve's blood pressure meds. (Carvedilol) again. Steve had a platelet transfusion this afternoon. The doctors are also interested in seeing how Steve's stomach is moving food, in part because of his history of Crohn's disease. The test is actually called a nuclear medical study for gastric emptying. This will occur early September. They are also lowering Steve's dose of IV steroids in order for him to receiving a dose equal to the 100 mg he was taking by mouth. When they switched him over to the IV dose in the mornings they actually increased his actual dose so now it will be back where it belongs. Steve's counts seem low to us and the nurse told us that for some reason that seems to happen around this time (day 54). Counts: WBC - 2,100 HCT - 29.4 Platelets - 21,000 ANC -1,790 Weight - 169.2.
August 24, 1999 - (Day 55) Another blood draw and steroids in the morning. Also a visit with the psychiatrist today. Steve will be doubling his dose of the Ritalin (for motivation and energy) and when I said I could use some energy and motivation I was told that that was what coffee was for. Steve had a positive blood culture so they have started an antibiotic. The bug is a Gram positive type but they and we will know more tomorrow. We have been told that the bug is rather common and treated easily. I will be giving Steve the antibiotic (vancomyocin) every 12 hours through a syringe-type pump at home. Counts: WBC - 2,230 HCT - 27.6 Platelets - 32,000 ANC - 2,030.
August 25, 1999 - (Day 56) Blood draw and steroids in the morning. Platelet transfusion also. We met with the doctors today. His Creatinine level is good which means his kidneys are doing better. This is very good news and hopefully means that Steve will be able to tolerate the FK506 which will in turn hopefully (along with the prednisone and MMF) control the GVHD. The doctors would like to see Steve eating more as his weight continues to drop. We are stopping measuring output as the doctors have the information they were looking for - but will continue to monitor input. They lessened the amount of hydration that Steve was receiving from 1500 ml to 1000 ml. That will mean 5 more free hours when Steve is not hooked up to anything. Steve fell today when taking some stairs. His knees just gave out and he dropped. Only a somewhat skinned knee and with a little time we were able to get him sitting in a chair and then standing again. This is the second time something like this has happened - I'm sure as a result of muscle loss from the prednisone. We may be able to start to taper the Prednisone again next week if all goes well with the FK 506. Counts: WBC - 2,440 HCT - 27.5 Platelets - 25,000 ANC -2,150 Weight - 167.8.
August 26,1999 - (Day 57) Blood draw and steroids in the morning. We also met with the nutritionist. She encouraged Steve to start drinking more double-strength milk (milk with dry milk mixed in for extra protein and calories). He is consuming about 80% of what they would like him to be. He met with an eye doctor today as Steve had been having problems with one of his eyes turning in and interfering with his vision. The doctor said that it looked like Strabismus (problems with the muscles that control the eyes) which Steve had before the transplant but not to this degree - and short of surgery (which he can't have now) there is nothing really to be done. He did suggest that Steve could wear an eye patch and cover up the eye that is bothering him. Of course it is possible that once Steve is off all the drugs that the problem might go away by itself. It is mainly just irritating to Steve and not a major concern. We forgot to mention that we received a letter and photograph from our donor two days ago. We were very glad to hear from her and she seems to be the angel that we knew she must be. Also Steve's Creatinine is down again (good thing) and his kidneys are doing real well. Since his kidneys are doing fine they are upping Steve's dose of the FK 506. Steve had another platelet transfusion today and is already scheduled for a red cell transfusion tomorrow. Counts: WBC - 1,870 HCT - 25.8 Platelets - 28,000 ANC -1,550 Weight - 166.9.
August 27, 1999 - (Day 58) Blood draw and steroids in the morning. We had a clinic visit and Steve's kidney and liver functions are better. The clinic was supposed to be in the morning but after an hour of waiting we went home. Steve saw the doctors in the evening when he was receiving his red cells. Receiving the blood raised Steve' s blood pressure up a lot again and the nurses told us to add a blood pressure med. when we got home and also to skip the day's IV hydration as the blood Steve received counts as fluid and more fluid would make the heart work harder. We are upping the FK 506 GVHD drug again as Steve has not obtained a therapeutic dose with the amount of the drug that he had been taking. Counts: WBC - 2,080 HCT - 25.6 Platelets - 46,000 ANC -1,750 Weight - 167.5.
August 28, 1999 - (Day 59) Blood draw and steroids in the morning. Steve tripped and fell down on our way out of the clinic today. He has skinned his knee when he fell the other day and with this latest fall his knee did start to bleed. I cleaned it with hydrogen peroxide and if that won't teach him not to fall I don't know what will! He needed Platelets again today to our surprise since his counts seemed rather high yesterday. We had the nurse clean Steve's knee again and had the doctor take a look. The weekend doc suggested that Steve start using a walker for some extra support since Steve really can't afford to taking numerous spills and risking getting hurt. They will be checking with our insurance company to see if it is covered. Open cuts would leave Steve at risk for infections and with the steroids that Steve is on his bones are definitely not at their strongest. Counts: WBC - 2,080 HCT - 31.8 Platelets - 30,000 ANC -1,890 Weight - 165.
August 29, 1999 - (Day 60) Blood draw and steroids in the morning. No transfusions today and Jessica gets the evening off to see her favorite band in concert (Styx) while I get to watch videos with our volunteer for the evening. Counts: WBC - 2,100 HCT - 31.1 Platelets - 39,000 ANC -1,800 Weight - 166.8.
August 30, 1999 - (Day 61) Blood draw and steroids in the morning. We had our last clinic with our excellent primary doctor today and we will miss him. He did indicate that our battle could very possibly be a long one filled with ups and downs. We will meet our new primary doctor on Wednesday. They have stopped one of Steve's blood pressure meds. in the hopes that one drug will be enough to control his blood pressure and removing this particular drug (Norvasc) may help with the edema (swelling) in his ankles and feet. His kidney function is up a little but is still acceptable. He needed a little extra magnesium in his IV bag today. We just learned today that at the end of Steve's hospital stay, at the end of July , his heart had been enlarged indicating that his heart could not handle the amount of work that it had to do. This is the first we heard of it and Steve is angry that this information was kept from him. Steve has weekly chest x-rays to monitor the size of his heart and there have not been any problems since that one time at the end of July. Counts: WBC - 1,620 HCT - 29.9 Platelets - 32,000 ANC -1,460 Weight - 166.9.
August 31, 1999 - (Day 62) Blood draw and steroids in the morning. We met briefly with the psychiatrist today as well. Steve needed a platelet transfusion in the afternoon. Sometimes he gets the chills during a transfusion but today after his transfusion was over Steve felt wheezy. He said it felt like gargling in the chest. So we waited around 40 minutes for the doctor to check him out. His heart and lungs and everything else seemed find so they sent us home and told us to call if anything came up. Starting tomorrow morning Steve will again be receiving his morning steroid dose by mouth, no more IV. This is in hopes that soon we can start to taper the steroid and eventually get him off it since it makes him so weak. They are also lowering his dose of the antibiotic as it is a very toxic drug and both his kidney and liver functions are up. Counts: WBC - 2,770 HCT - 30.5 Platelets - 26,000 ANC -2,380 Weight - 168.9.
September 1, 1999 - (Day 63) Visit with the Nutrionist this morning, she felt that Steve was doing a decent job of meeting his nutrition goals. Blood draw was right after. We had a clinic today and a long wait. We were about to go home when the Attending doc came by. While he was checking Steve out a old skin biopsy scab on Steve's leg got ripped off and just started bleeding like crazy. Come to find out that an artery had a cut in it and it was spurting. They had a surgeon from the hospital come over right away. He numbed Steve's leg with a Novicaine needle and then cauterized (fused) the artery. The only part that hurt was the needle but boy was there a burnt smell in the air. Then they wanted him to have platelets, so we spent 6 hours at the clinic today. We met our new primary doc and found out that he is very new to the program. We requested a different doc to ease Steve's mind especially because Steve's case is a complicated one. The good news is it looks like we will be reunited with our old primary that we had for the majority of Steve's hospital stay as well as when we first arrived out here. We like him a lot. Counts: WBC - 1,590 HCT - 28.2 Platelets - 39,000 ANC -1,380 Weight - 165.
September 2, 1999 - (Day 64) Steve had a 2 hour gastric emptying test of his stomach to see how fast his stomach empties after eating food. In this case a radioactive egg salad sandwich. He just had to lie down after eating and they put a monitor on his stomach to enable them to get the information they needed. Ok, so that's a little vague but I wasn't actually there. Blood draw right after. They stopped Steve's antibiotic today. We are not sure why but it could be either that it was too toxic for Steve's liver and kidneys or the infection is finally gone. Let's hope that the bacteria infection is indeed gone. Steve was very tired this morning, his legs were feeling very weak as they often do. It is getting hard for him to continue walking to the clinic every day. The walker helps a little but is more of a pain than a help on the sidewalks. He did feel better and stronger as the day went on though. Counts: WBC - 1,430 HCT - 27.3 Platelets - 53,000 ANC -1,320 Weight - 162.7.
September 3, 1999 - (Day 65) Only a blood draw in the morning. We actually both slept in a little today. Steve had his first outpatient visit with Physical Therapy today. It seems very individualized and will hopefully help. He goes back next week once and then will go twice a week. We had our first clinic with our old doctor from the hospital. It is nice to have someone that is already familiar with Steve's case. We found out that they stopped the antibiotic because the last blood culture had come up negative for the bacteria and he had a high level of the antibiotic in his system already. Plus he had already been receiving the antibiotic for 9 days. I believe that you usually receive an antibiotic from between 7 to 14 days. Steve's Creatinine is up more. The doctor's don't know why his kidney function is up but they will start doing some tests. One test they will do is a microscopic of his urine. Steve's doctor says he is "concerned" but not "worried" yet. He does not feel Steve is anywhere near in danger of renal failure. Creatinine is a measure of the filtering capacity of the kidneys and lower numbers are better. We were reminded today that GVHD can indeed suppress the blood counts and we should not worry about the lower counts. Actually Steve's doc said that Steve had a "poopy graft". He said they taught him that in medical school. He is just referring to Steve's low WBC and ANC. He said that counts do tend to get low at about this time and no one knows why but that they start to rise again around day 80. He reiterated too that his biggest concern right now is controlling the GVHD. They also lowered Steve's platelet transfusion threshold down to 20,000 from 30,000. Counts: WBC - 1,460 HCT - 26.2 Platelets - 39,000 ANC -1,300 Weight - 163.7.
September 4, 1999 - (Day 66) Blood draw in the morning and a red cell transfusion in the afternoon/evening. Last night our nurse called with the results of the stomach emptying test. It seems that it takes Steve's stomach 8 hours to empty and the norm is about 1 hour. They wanted to start Steve on a drug called Reglan that would aid in the stomach emptying process. I went to pick it up this morning and they said I couldn't have it, that the patient claims to be allergic to Reglan. I told the pharmacist that I had it on good authority that the "patient" hadn't even heard of Reglan until last night. He wanted me to take it and pay for it just in case Steve was allowed to take it- I said I'll come back and pay for it only if Steve was definitely going to be taking the drug. We talked with the weekend doc and got it all straightened out (45 minutes later). Steve will take a lower dose than first suggested and will skip the bedtime dose. He really shouldn't have any problems (CNS-type problems is what we are concerned about) unless he takes the Reglan after a period of fasting. First sign of any trouble and Steve will stop taking it. He had had a few bad experiences with a similar drug (Compazine) last year when fasting for medical tests. Counts: WBC - 1,300 HCT - 25.6 Platelets - 26,000 ANC -1,160 Weight - 164.4
September 5, 1999 - (Day 67) Blood draw in the morning and platelet transfusion in the evening. Steve's Creatinine level rose a tad so the weekend Attending has increased his fluid IV from 1000ml to 1500ml. Also, the site on his leg that recently had to be cauterized recently started to bleed again but the platelet transfusion should take care of that. Counts: WBC - 1,500 HCT - 31.2 Platelets - 17,000 ANC -1,260 Weight - 163.7
September 6, 1999 - (Day 68) Well, another short day (supposedly) turns into 6 hours at the clinic. Blood draw and weekly chest x-ray in the morning. We had a clinic with the weekend doc. He raised Steve's platelet threshold back up to 30,000 because of some bleeding problems over the weekend so we had to stay for more Platelets. He also sewed a stitch or two in Steve's chest to try and anchor Steve's Hickman line better. The old stitch had completely ripped through the skin and the Hickman catheter has actually started to slide somewhat out of his chest. Hopefully these new stitches will prevent the line from coming out any more as well as stop the line from sliding in and out which would put Steve at risk for infections. His counts are down the lowest they have been since Steve engrafted and even though the docs tell us not to worry, it is discouraging. Counts: WBC - 930 HCT - 27 Platelets - 24,000 ANC - 820 Weight - 164.2
September 7, 1999 - (Day 69) Just a blood draw this morning. The team told us to stop Steve's antibiotic (Bactrim) because his counts (WBC and ANC) were so low yesterday. Counts: WBC - 1,220 HCT - 29.2 Platelets - 37,000 ANC - 1,000 Weight - 164
September 8, 1999 - (Day 70) Blood draw in the morning and a Platelet transfusion and clinic with our team in the afternoon. Steve will try going down from 40 mg to 20 mg on his drug for acid reflux. His counts came up just a tiny bit, possibly in response to stopping the Bactrim. We are also lowering his MMF dosages to help his count bounce back up. We need to keep an eye on any GVHD flare up, though. When Steve received the extra hydration on Sunday his kidney function improved somewhat so we are going to try even more the usual to keep Steve drinking all the time to flush the kidneys. His GVHD appears to remain stable or even better. We talked about the possibility of going home Day 100 and it is possible. The only criteria that our PA gave us for returning home was a stable graft (no wildly fluctuating WBC and ANC counts), controlled GVHD and no infections. He actually said that if today had been Day 100 he would have said "C'ya!" Overall a good day - there was actually no bad news today! We needed a day like this as it feels like we have been fighting an uphill battle for so long. Counts: WBC - 1,390 HCT - 28.2 Platelets - 22,000 ANC - 1,130 Weight - 163.5
September 9, 1999 - (Day 71) This morning we took a taxi to clinic for the first time as Steve did not think he would make it on foot. He possibly wore himself out making a big breakfast and also he is due for a red blood cell transfusion and this, too, can make him tired - the red blood cells are the ones that circulate oxygen throughout the body. Then Steve had appointments with Nutrition and Physical Therapy and both went well. We also saw Steve's main doctor while he was inpatient. It was nice, he came over to talk and reiterated how good it was that Steve had not had to be readmitted to the hospital since many if not most patients do end up in the hospital for an infection or other complications once discharged. He is a very positive man and we were glad that he took the time to say hello. Steve's ANC dropped below 700 today. Anything lower than 750 and the doctor's like to start hormone Growth Factor shots that will quickly bump up the ANC and WBC and therefore reduce Steve's susceptibility to infections. First, though Steve will have his Day 80 bone marrow aspiration so that the Growth Factor shots will not interfere with the information received from the aspiration. This should be Steve's last bone marrow aspiration in Seattle. Counts: WBC - 1,060 HCT - 25 Platelets - 35,000 ANC - 700 Weight - 163.5
September 10, 1999 - (Day 72) Blood draw as usual. Steve had his bone marrow biopsy and aspiration today. That went ok even though they were having a hard time getting a big enough sample of marrow. They should have results in 1 to 2 weeks. I also gave him his shot of GCSF hormone while at the clinic. He will continue to receive the shots until his counts are up sufficiently. Today the news does not seem as positive as two days ago. Everything seems to change from moment to moment around here. The doctors' concerns are the GVHD, his kidney function and the possibility of graft failure or rejection. They are still not sure whether or not Steve has GVHD of the liver and/or stomach. His skin looks pretty good so far as we continue to taper the Prednisone. We will have to see if the lowered dosages of MMF has any negative effect on controlling the GVHD. The docs also reduced his FK 506 (another GVHD drug) from 4 mg twice a day to 3 mg twice a day because of the kidney toxicity. We have to watch out for GVHD flare up with the lower doses of all these drugs. Steve has something called HUS (Hemolytic-Uremic Syndrome) of the kidneys. This HUS is brought on by the FK 506 and the Cyclosporine before it. He is spilling protein and red blood cells in his urine. This is because the FK 506 affects the small blood vessels in the part of the kidneys that filters waste. It is supposed to be like a tight sieve, but when the blood vessels get affected like they have the pores get bigger and the filtering system lets protein and other things out that should not be let out. Or something like that anyway. It is reversible once Steve is off the FK 506 but he can't get off of it so there isn't much to be done about it right now. There were other med. changes today which include adding Norvasc back again to help control the high blood pressure, stopping the Reglan (stomach emptying drug) as it may be causing diarrhea and also lowering the dose of Prilosec (acid reflux drug) to 20 mg (this had been discussed late last week but never implemented.) Platelet and red blood cell transfusions in the afternoon. Counts: WBC - 1,300 HCT - 25.1 Platelets - 18,000 ANC - 1,060 Weight - 163.5
September 11, 1999 - (Day 73) Blood Draw again. They called us un the afternoon to let us know that Steve needed a platelet transfusion and that "he grew something in his urine." In other words he has another bacteria infection (gram negative rod for inquiring minds - Aunt June), possibly originating in his kidneys. They will be treating it with oral Cipro, an antibiotic, and expect it to clear up right away. Steve received another growth factor shot. We expect to see counts start to rise by tomorrow or Monday. The team has actually scheduled our departure classes, testing and conference. Although this does not guarantee that we are on our way home - it's a start! Counts: WBC - 1,200 HCT - 31.1 Platelets - 25,000 ANC - 1,020 Weight - 160.8
September 12, 1999 - (Day 74) Had to take a taxi to the clinic for blood draw again today because Steve didn't think he could make it. Counts: WBC - 1,160 HCT - 28.8 Platelets - 36,000 ANC - 1,020 Weight - 160.1
September 13, 1999 - (Day 75) Blood draw and weekly chest x-ray in the a.m. At our clinic visit we were told that everything was still on schedule for our departure. We are stopping Fluconazole the anti fungal drug. This is something that is usually done at Day 75. Steve received a platelet transfusion this afternoon. Steve's counts (ANC and WBC) are the lowest they have been since Steve engrafted. This is a concern. They have increased his dose of growth factor shot and have taken him off the MMF (GVHD drug) in hopes of correcting this concern. The MMF is one of the drugs that really suppresses the immune system. Of course now he has much reduced GVHD protection. The attending doctor has said there is a 50/50 chance that Steve is experiencing graft failure. There is only 15% of the expected amount of bone marrow growing in his bone marrow cavities right now. This is down from 70% at Day 37. They will be keeping a close eye on all of this and will have a better idea of exactly what is going on by the end of the week. Counts: WBC - 880 HCT - 26.9 Platelets - 23,000 ANC - 700 Weight - 161.6
September 14, 1999 - (Day 76) They did a fasting blood draw this morning along with all the usual regular tests that they do daily on his blood. This is part of the 80 day work-up. Steve's nurse canceled his Physical Therapy that was scheduled for today because of his low counts and low platelets as well as the concern for infection. His ANC dropped again today. We'd really like to see some improvement tomorrow. He also needed platelets again today. I just want to take this opportunity to thank all of you wonderful folk out there that are blood or platelet donors. Without you Steve and so many others would be in a lot of trouble - so bless you all. If you don't give blood - why not start? It's a great feeling! Counts: WBC - 880 HCT - 25.1 Platelets - 21,000 ANC - 660 Weight - 161.3
September 15, 1999 - (Day 77) Blood draw as well as a red blood cell transfusion in the morning. The red blood cell transfusions usually take from 4 to 5 hours. Met with the nutritionist who was pleased with Steve's eating and drinking. We had a clinic with our doctor today. They received more results from the bone marrow biopsy. They did not find any abnormalities in the bone marrow and still no sign of the Philadelphia chromosome (the marker for CML). Steve has 95.4% donor cells which is exactly where they expected him to be. The remaining 4.6% is Steve's cells. Also, 100% of his granulocytes and 98.5% of his T-cells are donor. For the lay person: the more donor the better! All this info leads the doctors to believe that Steve's graft is not being rejected. There is still concern about graft failure. Our PA tends to think that the graft has been severely suppressed by the drugs Steve is on, MMF in particular, and that is why the graft is having a hard time and the ANC is so low. Having a poopy graft is still a possibility as well. We will continue the growth factor shots and expect to see the results of stopping the MMF in a couple of weeks. Hopefully this is enough to get the graft back on track. If not some potential options would be another infusion of bone marrow from the donor or a procedure called donor leukocyte infusion (DLI). Obviously needing to take any of these actions will extend our stay in Seattle. As it is, we will not be home before Day 100. That is ok - we will stay out here as long as we need to. Counts: WBC - 1,030 HCT - 23.1 Platelets - 31,000 ANC - 780 Weight - 161.9
September 16, 1999 - (Day 78) Blood draw and a visit with the psychiatrist today. Another Platelet transfusion. A little trouble with his Hickman line being sluggish but hopefully that will clear up. His counts are up higher than they have been since September 5. Two days of the counts going up? Looks like a trend to me! Counts: WBC - 1,450 HCT - 27.8 Platelets - 17,000 ANC - 1,170 Weight - 162.4
September 17, 1999 - (Day 79) Blood draw as always. "Day 80" pulmonary function testing today. He did not lose that much ground and his lungs are doing well post-transplant. Clinic visit with our doctor. He was pleased about Steve's counts going up again. This is the third day in a row that his counts have gone up which is a good sign. Steve's hands are red and somewhat painful today and may be GVHD. We will watch to see if it spreads. They also did a skin biopsy and a Schirmer's eye test as part of the "Day 80" work-up. The eye test checked for the proper amount of tearing in his eyes - not enough could indicate GVHD, but his tearing was fine. The skin biopsy is performed with a skin punch on his arm about 1/4 of an inch big, also to check for GVHD. Physical Therapy and platelet transfusion in the afternoon. They are still having trouble drawing blood on the red line of his hickman and flushed his line for the second time with a chemical designed to help - it doesn't seem to have had an effect. Steve will be starting a new stomach emptying drug today called Cisapride. Counts are up third day in a row! Counts: WBC - 1,820 HCT - 27.8 Platelets - 26,000 ANC - 1,330 Weight - 164.1
September 18, 1999 - (Day 80) Blood draw and another platelet transfusion. Blood was drawn from the hickman line today with no problem but it is starting to slide ever so slightly out from Steve's chest. At this time there is really no physical mechanism in place to keep the hickman from coming completely out. As long as there are no major tugs, it should be OK for now. We will have the team look at it closer on Monday. Counts are down a bit - Boo! WBC - 1,450 HCT - 25.6 Platelets - 21,000 ANC - 1,040 Weight - 164.5
September 19, 1999 - (Day 81) Blood draw and red blood transfusion today. His hickman line continues to be of concern - to me, at least. Also his temp has been high (for him) for a week now. None of the medical professionals are excited about it, but I intend to do a little friendly pushing on the matter tomorrow at his clinic. Counts are up: WBC - 2,060 HCT - 24.6 Platelets - 35,000 ANC - 1,670 Weight - 162
September 20, 1999 - (Day 82) Blood draw, urine specimen and visit with the nutritionist. The nutritionist continues to be very pleased with Steve. Blood pressure has been improving as we continue on the prednisone taper. At Steve's clinic visit today the team decided to stop the taper for a while because they suspect GVHD of the skin. We mentioned that Steve's temperature has been climbing for a week now and as fortune would have it they were already doing all the tests today (chest x-ray, blood culture and urine test) that they would have called for to check for infection. Results may take a little while. His hands are possibly rashier and a bit more painful and red. He also has mysterious red bumps on his bald noggin and clear bumps across his chest. They may be consulting with the GVHD study nurse to see if this could be indeed GVHD. The doctor thought Steve's Hickman line looked fine with no signs of infection. In order for us to come home the attending doctor would like to see Steve's counts approaching normal (4,000 for WBC) and stable (or no) GVHD. We are still scheduled for our departure summary next Wednesday. Platelet transfusion in the afternoon. For a bit of daring excitement we ate out at a restaurant for dinner. It was Steve's first meal out post - BMT and although there were all sorts of rules to follow and pitfalls to watch out for it was still nice. Counts: WBC - 2,200 HCT - 29.4 Platelets - 14,000 ANC - 1,800 Weight - 164.1
September 21, 1999 - (Day 83) Bone density scan, oral medicine departure exam and blood draw in the morning. His mouth looks good with no signs of mouth GVHD. The bone density scan shows loss of bone density from pretransplant. This is due to the use of high levels of steroids and therefore expected. Platelet transfusion in the afternoon. His urine specimen did not show signs of any bacteria although there was some blood in his urine, most likely from the HUS. We had to go back to the clinic at 9 pm for Steve to receive IV FK 506 (GVHD drug). Two days in a row his FK 506 level came back insanely low, so in order to make sure he is receiving therapeutic levels he will start receiving the drug through his Hickman catheter. After tonight we will probably give the IV FK 506 at home with a syringe pump. Counts up some more: WBC - 2,770 HCT - 27.3 Platelets - 21,000 ANC - 2,490 Weight - 164.2
September 22, 1999 - (Day 84) Blood draw and IV FK 506 at the clinic in the morning. He will get the IV FK 506 at home tonight. Had a clinic today. The doctor's are stumped about why his FK 506 level went so low. They are pretty sure however that when the level got so low is when Steve's GVHD started to flare up in the form of a bumpy rash on his head, chest and arms. This should fade after his FK 506 level gets back up into the range where it should be. His skin biopsy, contrary to what we now know, came back negative for GVHD. But the docs are sure he does have it. Physical therapy went well in the afternoon, Steve is slowly getting stronger. Still on a course set for discharge! Nothing better to make your day then WBCs in the normal range:: WBC - 4,380 HCT - 27.1 Platelets - 38,000 ANC - 3,990 Weight - 163.5
September 23, 1999 - (Day 85) Just blood draw and Platelet transfusion today. Still on course...Counts: WBC - 5,230 HCT - 27.8 Platelets - 25,000 ANC - 4,550 Weight - 161.2
September 24, 1999 - (Day 86) Daily blood draw. Clinic visit today. We are going to keep giving Steve IV FK 506 at home until he reaches a therapeutic level, and then we will try the oral version of the drug and stop the the stomach emptying drug which may or may not have interfered with the FK 506 absorption into the blood stream. They also upped the dose of the IV FK 506. He still has a bumpy rash on his torso, arms and head. Physical therapy in the afternoon. We are tentatively going ahead with plans to fly home on October 9th. Counts: WBC - 6,820 HCT - 26.8 Platelets - 32,000 ANC - 5,940 Weight - 160.9

September 25, 1999 - (Day 87)

9,240

23,000

8,130

162.3

I recently received a petition for the new drug ST1571 (tyrosine inhibitor), it has 1000 signatures so far! Please read the text below...

Petition Text:
We are forming this petition in order to speed up the manufacturing of the drug ST1571. This drug is in early clinical trials and is showing great promise for a cure or at the very least prolonging the life of some CML patients. At present there is a shortage of supply of the drug ST1571. If more of the drug were available there would be a greater number of trials. In turn this would speed up the process of having it available to the public by two years or less. This would save lives for the individuals with CML that cannot have a Bone Marrow Transplant or where other treatments have failed.

Click here to go to petition site

September 26, 1999 - (Day 88) Blood draw and red blood cell transfusion today. Counts: WBC - 11,522 HCT - 25.8 Platelets - 48,000 ANC - 9,800 Weight - 162.7
September 2