Link to
Today's Entry 10/04/01
Date |
Day |
Counts |
Narrative |
|
1986 |
. | . | . | I had been diagnosed with Aplastic Anemia in 1986 when I was 6 years old. I recovered without treatment. I was treated at Stanford Children's Hospital. |
1991 |
. | . | . | In 1991 I was diagnosed with a brain stem glymous which was later identified as a Cyst and was successfully treated with high doses of Penicillin and Ampicillin |
1/13/99 |
. | . | . | I had a routine Physical Examination by Dr. Rocco. Due to my background he wanted to run a blood test on me. |
1/19/99 |
WBC RBC HGB PLT |
2.3 1.04 4.2 113 |
Dr. Rocco receive the results of the blood test and was alarmed by the
test results he asked that I be screened further at Hazel Hawkins Hospital in Hollister,
CA.
|
|
1/25/99 |
. | . | Appointment with Dr. Yanagihara to have a Bone Marrow Biopsy. After
review of Blood work and biopsy. I was referred to Dr. Glader at Stanford Children's
Hospital. Dr. Glader had previously treated me in 1986. Dr. Yanagihara and Dr.
Glader wanted me to be transfused immediately and transported to Stanford Children's
Hospital in Palo Alto, California. Things were happening too fast. My father was concerned about having excessive transfusions especially if a BMT was indicated. We chose to hold off on the transfusions and drove to my Dad's home which is 10 Miles from Stanford Children's Hospital. |
|
1/27/99 |
. | . | . | Today we went to Children's hospital for the first time in many years. Blood tests were done and Dr. Glader wanted me to be transfused immediately to bring up my blood levels. He was concerned of transfusing too quickly as my counts were so low. The first pint was run into me at a rate of 1 pint over 4 hours. A second pint was run in over 3 hours. I was lucky that we could do this in the day hospital. Additional blood draws were done and we went home for the evening. |
1/28/99 |
. | . | . | Well, back to the day hospital today for another pint of blood. Dr. Glader discussed what he had seen in the Bone Marrow Biopsy. The cell development was poor and there was abnormal cell development. I am really concerned that it is Leukemia. Dr. Glader ordered a second Bone Marrow Biopsy. After the third pint of blood my HGB was up to 9.7 and they were happy with this until they could figure out what was going on. |
2/16/99 |
. | . | . | I had a visit with Dr. Kim, he is part of the Bone Marrow Transplant team. He gave me a run down on what the BMT will do for me, as well as the complications that could go wrong. Then he gave me a tour of the ward were I'd be receiving treatment. |
2/18/99 |
. | . | . | Today my brother Seth went into Stanford for HLA Cross Matching. He was previously matched as a perfect match back in 1986. I sure hope he is still a match |
3/24/99 |
. | WBC RBC HGB PLT |
2.3 2.57 9.2 108 |
I went in for my blood counts to be tested, and was given many tests for HIV or other transmitted diseases. My counts are as followed: |
3/26/99 |
. | . | Today Seth had to go into Stanford for a consultation with Dr. Amylon. They had to do a full blood work up and x-rays and get his consent for being my Donor. He is so good to do this for me. | |
4/1/99 |
. | . | . | Today I went to Stanford to have the radiology dept. examine me and take x-rays. Then I had to go to have an ECHO of my heart done, and a ultrasound of my heart and a pulmonary diagnostic done to me. To make sure everything is working properly. I saw my old friend from high school Gabe, he was in for a check up due to his BMT. I talked to him and we arranged to talk about the experience. |
4/7/99 |
. | . | . | Today I had a consultation with the surgeons for the insertion of the Hickman Catheter. I had to fill out admitting papers as well. Tomorrow I am having the Hickman catheter inserted into my subclavian vein, this catheter will be used to administer drugs as well as the bone marrow. |
4/8/99 |
. | . | . | Today I had my Hickman Catheter put in my subclavian artery. I was heavily sedated and was given a shot of Valium. My appointment was scheduled for 3:00, but I was not seen till 6:00 PM, the procedure took 45 minutes. The area is still sore, but they gave me some Vicadin for the pain. |
4/9/99 |
. | . | . | Today I went in to the hospital for a lesson on how to clean my Hickman Catheter as well as put heprin in it so it will not clot. There are many steps, but it will ensure that I will not get infections around the catheter. |
4/10/99 |
. | . | . | I am packing all my things for my stay in the hospital. I am packing mostly sweats and PJ's, and slippers and my teddy bear. I also am taking a photo album so I can see my friends and family. There is so many things I need, but not enough bags to carry it all. My friend Gabe gave me ideas for what I will need to bring, since he too had the procedure. |
4/11/99 |
. | . | . | This is the day before the big day. From this moment on I will have a new life, and many thoughts are in my mind. I am spending the day with the people that love me, I will treasure this day for s long time. I have to be in the hospital tomorrow at 10 am. |
4/12/99 |
-8 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT |
2.7 2.08 7.4 21.2% 102.0 35.8 35.0 22.9 96 |
Today is the Big Day, I have a appointment with Radiology at 4 PM to check
my lung shields to make sure they fit properly. It is just the beginning of my journey. I
am scared, but trying to keep positive thoughts. My blood counts had dropped so the had to give me a transfusion of 2 pints of blood overnight. |
4/13/99 |
-7 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT |
2.9 2.53 8.8 25.3 99.9 34.8 34.9 27.4 93
|
Today was the first day of Radiation. I threw up already 4 times, after
every treatment. I feel really horrible, and queasy. After every meal or drink I throw up,
this is so far been horrible to endure. I have asked the nurses for a heavier drug to stop
the nausea. After the radiology appointment at 4:00 P.M. Alison cam back and had dinner. She had just been very sick during her final treatment of the day. After dinner, Alison was give a pretty heavy dosage of Benadryl and Phenergan. She fell asleep almost instantly Ray, her fiancée, came to visit at 6:00-9-00 PM and reported that she was asleep almost the entire time he was there. Alison was given another two pints of blood tonight to get her counts a little higher. The would like to keep her HGB at or above 9.0. The combination of PNS and Radiation are killing off her blood. This is not unusual and she will have many more transfusions before this is over. |
4/14/99 |
-6 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutrophil |
2.9 3.41 11.8 32.7 96.1 34.5 35.9 21.8 96 2.00 |
Today radiation was better, I was able to keep down my breakfast and took
a walk to the cafeteria with my father and had some coffee. My mother and step- father
will be coming to visit today. I have another appointment with radiation at 12:00 and 4:00
still to go today. They also radiated my ribs today with neutron x-ray machine. The
radiation wont make my hair fall out, but the chemo will. Alison really did great today. With the aid of her meds she didn't get sick all day. She was in great spirits and really enjoyed a visit from her mother and step-father. Ray and his sister are coming to visit tonight. |
4/15/99 |
-5 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutrophil |
1.8 3.191 10.6 31.3 97.9 33.4 34.1 21.7 82 1.3 |
Today was a rather mixed day for me. I had my first radiation
treatment at 8:00AM. After getting back to the room I got sick again. At least
the nausea passed rapidly. Dad and I took a long 2+ hour walk around the hospital.
Figured we might as week get in as much freedom as possible before I go behind
double doors. Once my neutrophil's drop below 500 I will have to stay in isolation
until after the transplant and my neutrophil's are again above 500. My second radiation treatment of the day went well and I did not have any nausea. Gabe, a friend of mine came to visit this afternoon. He had a BMT in the same hospital 2 1/2 years ago. He has really been helpful in telling me like it is. Mom and Pat came to visit for a couple hours this afternoon. It was great seeing them. Well, was too good to be true and I got sick again after my 4:00PM treatment. Looking on the brighter side I only have two more treatments left. Ray came to visit tonight. |
4/16/99 |
-4 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutrophil |
. | Well today was a pretty good day. I finished with Radiation Therapy
and only got sick twice. My sister Mindy came up on the train to visit today.
We must have walked 2 miles. It will not be long before I go into double door
isolation. I begin chemo tomorrow. It will be administered over a 4 hour period. They say I may get real sick but they will give me drugs to reduce it. Since my hair won't be with me very much longer, I gave myself a haircut. It actually was a lot of fun and Mindy and I tried on all my hats. If you want to see the haircut go to my temporary haircut gallery.
|
4/17/99 |
-3 |
. | . | Well this is chemo morning. I am feeling anxious right now.
they are suppose to begin my chemo in 10 minutes. I am getting Benadryl right now to
be followed with cortozyn. It is suppose to make me drowsy. If the Benadryl
hits me like Monday I may just sleep through the chemo. Chemo has been pretty tough on Alison. Her blood pressure has been running very low (expected side affect). She is being monitored every 5 minutes. During her third ounce she finally had a raise back to an acceptable level. At 2:00 PM PST she is on the 4th and final ounce. She has a headache and has gotten sick only once during chemo so far. She is resting comfortably right now. All day yesterday was horrible, I was sick and had a headache. It was scary since my blood pressure started to drop. The lowest it got was 87/37. Later the in night I was pumped up with fluid. |
4/18/99 |
-2 |
. | . | Today is better. It is a rest day, so no meds or treatment today. My mom and brother will come visit me today. So I am going to get out of bed and walk to the main hospital. Since I will soon be put into isolation. |
4/19/99 |
-1 |
. | . | I was put in Isolation this morning since my counts dropped. I was knocked out most of the day because the nurse gave me some Benadryl for nausea. They started to feed me through the I.V., since I'm unable to hold my food down. Then late afternoon Dr. Glader stopped in to say Hi, as well as Dr. Amalon. Dr. Amylon asked if I had any questions about the transplant, but most of my questions already have been answered. Later in the evening Ray came and watched some TV. with me. |
4/20/99 |
0 |
. | . | Day Zero - My new Birthday This morning I vomited again
after breakfast. My Dad and brother stopped in my room before his harvest of the bone
marrow. He was nervous since this was his first time in surgery. After they get the bone
marrow they will send it to the lab, and later send it up to me. It will be given to me
like a blood transfusion. I will be groggy because they will give me Benadryl. Seth went down to surgery at 7:30 a.m. After he was pulled into the operating room at around 9:00, Dad came down to my room and we waited for news that he was coming out of the recovery room. Finally at 10:15 Dad got a page from Surgery that the harvest was completed and Seth was being moved to the recovery room. Dad went down to day surgery and met with Dr.Amylon. He came out of the operating room carrying the transplant. It will be a couple of hours until I receive the transplant. Since Seth and I have different blood types (he has AB+ and I have A+) they have to remove his Red Cells from the Marrow. He will then be transfused back his red cells and I will receive the remainder. After the transplant my blood type will change to AB+. Finally around 1:30 P.M. a lot of activity began. The Chaplain came in to give me a blessing and then Dr. Amylon arrived carrying the first 400 ml. of the transplant. I had been pre-meditated to receive the transplant. At 2:00 P.M. I was hooked up and they began to infuse the bone marrow. The transplant is done via a transfusion into my Hickman. A total of about 650ml were finally infused and I felt great. It was really exciting watching my new life being infused into me. Dad has been running back and forth between the day hospital and my room all day. Seth is quite week and has gotten sick. At 5:00 PM Dad and Seth arrived in the room. Seth was in a wheel chair and was quite sore. We visited for 1/2 hour and then they went home to put Seth to bed. Ray came to visit tonight and we had a wonderful visit. |
| 4/21/99 | +1 | . | . | I woke up this morning and got sick. I felt pretty good and had a
nice visit from Dad and Seth. Mom, Pat and Mindy came to visit later in the day.
Mindy did not come in as she had sore throat and is afraid of infecting me with
something. Without an immune system I have to really be careful. I got sick a
couple of times today and began throwing up some blood. As terrible as this sounds
it is expected and things will get a lot worse before they get better. As the day progressed Alison began to feel weaker and weaker and more sick. They have given her something for her nausea and fell asleep. They have also hooked her up to her heavy medicine for pain. Things are really going to be tough for the next couple of weeks until the transplant begins engraftment. I have added pictures of the transplant to her alternate site under the Day Zero Gallery - |
| 4/22/99 | +2 | . | . | Alison was rather sick overnight and was vomiting blood. The
gave her some platelets overnight. To relieve the nausea they gave her a cocktail of
Benadryl and Phernegin at 1:30 AM and 6:30 AM. It has left her really drowsy and she
has been asleep most of the morning. We spoke with the Doctor this morning and she requested that they only give her the mild anti-nausea medication during the day and the other at night time. She has some mild mucosis in her mouth this morning. Alison got up for about 20 minutes at 11:00 AM and checked her e-mail for the first time in 24 hours and then climbed back into bed. She wants to get up around 1:00 pm and take a bath. |
| 4/23/99 | +3 | WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutroph |
0.1 2.98 9.8 28.8 96.8 32.9 34.0 19.7 16 |
So far my day has been pretty good. I've thrown up so far only twice. Last night I had a temperature of 101, so they gave me some antibiotics. The doctors said it is normal to have a temperature at this point. Today Ray, my father and mom and step- father will be in to see me. I still have not been able to eat for the last couple of days, because it will not stay down. I just received a call from my Aunt Carol, she gave me her encouraging words and told me that I am in her prayers. Alison had two pints of blood today to pump up her Red count and received packed platelets this morning. Her mouth sores have begun to spread and is becoming very painful. They have upped her pain killer to help relieve the suffering. |
| 4/24/99 | +4 | . | . | I had a temperature today, it was about 101 degrees. The doctors gave me some antibiotics to fight of the temperature. They said it is normal to have a temperature. The doctors also upped my pain medication for my mouth sores, since they get worse everyday. I still haven't been able to hold anything down. My Grandpa Charlie, and his friend Rouzbeh came to say hi to me on there way to dinner. It is always nice to see him, he is always cheerful. |
| 4/25/99 | +5 | . | . | This morning I did not have a temperature. I woke up early took a bath, cleaned my teeth, and changed my dressing on my catheter. After my bath when I started to brush my hair, a lot of strands are falling out. So in a couple days I think I will be bald for awhile. Iain and dad came up to visit in the morning. Ray, Mike and Laini came up to visit in the afternoon. It was nice to see all my visitors but left me tired. |
| 4/26/99 | +6 | . | . | Today after my bath a lot of hair began falling out. I brushed out at least 1/4 of my hair and hair was everywhere. As the day went on my hair really started falling out so I asked my Dad to shave the remainder off. See my BALD pictures. I did some exercises with my physical therapist. She said I am really doing well. The whole BMT team of Doctors came to visit me this afternoon. They say I am doing just fine. All we have to do is wait about 2 more weeks before the transplant begins to grow. |
| 4/27/99 | +7 | . | . | This morning I had a hard time waking up, because the night nurse kept waking me up for various things. I was woken up for meds, and then to have my blood drawn. I then needed platelets. Later through out the night I was woken up for vital signs. During mid- morning I woke up and washed my head, and cleaned my mouth. I also did exercises for a half an hour to stay in shape as well as preventing pneumonia. My old Dr. Glader came in to my room and said hi, he also said that he saw a boy around 13 years old that is from Mexico. He said the little boy is being diagnosed with PNH. This is his third time, including me that he has seen it. |
| 4/28/99 | +8 | . | . | Today I tried to stay out of bed. So I found a couple things to keep me busy. I Exercised for a half an hour. Then my physical therapist came in, and we made bead necklaces. I had many calls come in from my friends and family to see how I am doing. Alison's Platelet's and blood counts have been running low. She received a unit of blood this evening and another platelet pack. She had a couple bloody nose bleeds this evening. |
| 4/29/99 | +9 | WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutroph |
<0.1 2.99 |
Last night I barely got a wink of sleep. The nurse had to set up my I.V. since they change them every 3 days. I had a fever so I needed a blood culture done. Then they requested I get platelets. Then they brought me up some blood as well. So every twenty minutes if that I would get vital signs. I feel really tired due to this sleepless night. Later today I need to exercise and find things to keep me out of bed. |
| 4/30/99 | +10 | . | . | Last night I slept soundly. Since the previous night the nurse had kept me up around the clock. This morning I had a slight fever so the doctors are going to put me on another anti- biotic. I also had a period, which I was not suppose to get (they don't want me to have periods due to the blood loss and my platelet count), so they are putting me on another form of birth control. I later had physical therapy come in to show me some stretching exercise. Otherwise I am feeling fine. It is rumored that Chelsea Clinton is volunteering here at the hospital. My nursing assistant said she'll try to get her to stop by my room. |
| 5/1/99 | +11 | . | . | Last night Alison had Amphoterocin-b which is a broad antibiotic and fungicide. They are not quite sure why she is spiking fevers and want to premedicate just in case there is something they are not seeing in cultures. Half way through the administration of the drug she had a common reaction which is the shakes. They were able to contradict this with Demerol and gave here some oxygen until she got back to normal. She will have to have this drug daily so in the future they will pre-medicate her with Demerol. Alison has been throwing up blood this morning so they have given her some more platelet's. She will get another pint of blood later this afternoon and probably more platelet's to keep her levels up higher. |
| 5/2/99 | +12 | . | . | Alison was quite worn out today. She did get out of bed and sat up on the sofa but was not really full of her usual high spirits. Ray cam up and spent the day with her. She had her Ampho in the late afternoon and again had the chills and shakes halfway through the medicine. After she was given more Demerol she calmed down. |
| 5/3/99 | +13 | . | . | Alison was up early again today. She seems to be in much better spirits today. She is still doing quite a bit of bleeding from her mouth and nose so was given more platelets and a transfusion of red cells. She got on her stationary bike and did about 1 hour of exercise today. She decided that she would have her Ampho today at 2:30. The premeditated her with Demerol, Tylenol and Zophran and then gave her a bump of Demerol 1/2 way through the 2 hours it takes to infuse the Demerol. The drugs made her really sleepy and she slept through the afternoon. Her mouth sores look terrible but she says they are not too painful. |
| 5/4/99 | +14 | . | . | Alison had a stuffed nose this morning and they gave her Benadryl. It knocked her flat on her tail and she was barely awake most of the morning. Ray was off work and came up for the day. She took her Ampho quite will this afternoon without any chills. Dr. Glader stopped in to check on her condition. He will be away for a couple of weeks and just wanted to check in on her. |
| 5/5/99 | +15 | . | . | Alison's blood counts are still quite low. They gave her two pints of Red Cells this morning and some platelets. She has had a nose bleed for about 2 hours this morning and they have a clamp on it. They will be running some tests on her clotting factor. She was kept awake most of the night with nurses attending to her and is really worn out this morning. Hopefully she can get some rest this morning as her Mother is coming up to visit. Alison is still having trouble with bleeding and had 5 units of platelets during the day. |
| 5/6/99 | +16 | Alison had a restless night with little sleep. She has been retaining water and swelling over the past two days. The doctors think that she may have a mild case VOD (VENO-OCCLUSIVE DISEASE). This is a syndrome that BMT patients often suffer from. In this condition her liver is not functioning up to normal levels. There isn't much medically they can do for this with the exception of watching her closely and give her diuretics. In most cases, VOD is mild or moderate, and the liver damage is completely reversible. |
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| 5/7/99 | +17 | Alison has been resting much of Friday. Due to the lower function of the liver she has been retaining a great deal of fluids. The hospital staff has been watching her closely. Last night she had two sets of X-Rays of her lungs and a EKG and ultra-sound of her heart. This is to make sure she does not have too much fluid build-up around her heart and lungs. She has been put on a lasix drip to reduce her fluid build-up. Her hands, feet and legs are extremely swollen and she is using Oxygen to help her breath easier. I will put a couple new pictures her on the next this evening. This afternoon the will begin using a new drug called AT3 (Anti-Thrombin 3) which is hoped to help her liver get going at full strength again. The drug is suppose to reduce her clotting factor. It is thought that the liver is saturated with little clots caused from chemo. The drug has shown some success in patients in helping to dissolve these clots and allow the flow of blood to continue without the occlusions. Since it is a blood product there should not be any side effects with the exception of an increase susceptibility of bleeding. |
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| 5/8/99 | +18 | Alison had her 3rd dose of AT3 this morning. Her fluid retention has stabilized as has her weight. Stabilization is better than further deterioration, but we are hoping that she will shortly beginning start giving off a lot of the fluid that is building up in her body. She says that she feels like someone beat the SH** out of her. She has had numerous nose bleeds today and more platelets are on the way. We are still anxiously awaiting the first sign that her blood counts are beginning to increase. Waiting is really difficult for her. |
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| 5/9/99 | +19 | Today is Mother's Day and Alison's Mom dropped in for a visit. Today was much better for Alison as she had lost a bit more fluid which gave here more mobility. She was able to get into and out of bed with just a little assistance. Ray came up for a nice visit today. |
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| 5/10/99 | +20 | Alison seems to be doing much better today. Even though she doesn't feel like she is. Her Bilirubin level (which causes the jaundice look) dropped significantly over night from 10 to 6.4. This is a good indication that her liver my have begun to work better. This morning she was in extreme pain. Dad finally discovered that her pump that controls her pain medication had somehow deactivated. Once the pump got going again she began to relax and was able to drift off into some much needed rest. Well no White Cell counts yet. We are still anxiously awaiting the first signs of growth. Yesterday the began giving her a new drug that induces the production of White Cells to give the a little boost. |
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| 5/11/99 | +21 | Well yesterday turned out to be a rough one for Alison after we had last updated the Journal. Right after her bath she had a transfusion and suddenly we noticed she was breaking out in a rash. She was given a rapid injection of Benadryl to counteract the allergic reaction. All seemed well until 4:00 when the nurse noticed that one of her pupils was much larger than the other. The doctor was extremely concerned and ordered a catscan. The were afraid she had a small hemorrhage in the brain. Alison was in the middle of receiving her Ampho when the doctor told her. Just after the doctor walked out she became extremely emotionally upset and triggered a chill from the drug. She finally had to have a third dose of Demerol to reduce the shakes. The emergency transport team arrived to transport her to the X-Ray Department for the catscan. at 7:30. Unfortunately while trying to get her on the gurney the transport doctor was beeped for an emergency trauma case arriving by ambulance. She was having severe pain from her liver and we had to figure out next how we were going to get the catscan. Finally Pam, the nurse on duty, stayed over her shift to escort her to the catscan. The doctor had prescribed morphine to relieve the pain - one dose halfway to the x-ray department and one dose once we got here on the catscan. bed. She did great and was back in her bed with 30 minutes. Luckily she did not have a hemorrhage but there were indications of a enflamed nerve which they suspect to be a reaction to the cyclosporin. The changed her to a new drug. Alison's Bilirubin began to climb again today (from 6.4 to 8.2) and she is retain fluids again. They have switched her to a new diuretic to assist in removing the build up of fluids. She has been running a high temperature most of the day and has been finding it difficult to remain awake more than a short period of time. Alison had a rough day so Dad spent the night with |
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| 5/12/99 | +22 | Well no white cells yet. We are still anxiously awaiting the first sign of her white cell showing. The rash on her body spread covering her head to toe. The doctors now feel that it is a mild GVH (Graft Versus Host Rejection). In a mild case it is actually considered good as it would mean that engraftment. has begun and the new cells are going out and attacking any leftover bad bloods cells that remained in her body. The have begun administering a steroid which will hopefully keep it under control. Alison's feet are extremely engorged with extra fluids and the soles of her feet are so sore she has to keep them in ice, and can hardly walk on them. We had some good news. Her Bilirubin level had dropped from 8.2 to 1.6. This is a pretty good indication that her liver is working better. She is still tender in the liver but not nearly as bad as it was over the past 3 days. Alison was further challenged this morning when she had her first platelets. Platelets are run in pretty quickly, usually over about 10 minutes. Within a minute of starting she had an allergic reaction to them and had to be medicated with Benadryl. The doctors finally decided to get new platelets which have taken until midnight tonight to get, she is being pre-medicated with Benadryl just in case tonight so we can get them into her. It is looking like a pretty busy night for her as she has 5 more drugs to be administered with infusion rates of up to 2 hours per drug. With 23-24 infusion pumps going and only 2 ports there is always a scheduling issue of which drugs can be infused in conjunction with other drugs. I am spending the night at the hospital again tonight. With the grace of God she will have a much better day tomorrow. |
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| 5/13/99 | +23 | WBC | 300 | Alison had a pretty severe seizure this afternoon. She is resting comfortable at this point. Alison awoke early and was up and out of bed by 7:30. She is still having quite a bit of pain and her liver and kidney are still giving her trouble. She was in great spirits and was even doing some light exercise. She started have some hallucinogenic episodes. The doctors were not unduly concerned as this is a common side affect of toxic cyclosporin. At about noon she suddenly went into a severe convulsion. It was one of the scariest moments in my life. A full code blue. She was stabilized in about 10 minutes but had a second less sever seizure about half an hour later. She remained restless all afternoon and is drifting into and out of consciousness. She had a catscan. in the late afternoon and it pretty much confirmed that there was no hemorrhaging and what appears to be cylosporin toxicity. The neuro-surgery team dropped by and have pretty much settled on the same conclusion. There isn't much left to do except wait it out. There isn't any antidote to a toxic reaction to cyclosporin. She is disoriented and doesn't recognize where she is or who she is or anyone around her. This should clear up when the body burns off the remaining cyclosporin. As long as she maintains her stable blood pressure, temp and does not have another seizure the will not move her to intensive care. We are keeping a close eye on her tonight. I guess in the lining off all dark clouds is a silver lining. In the middle of all this ordeal she finally popped her white cell count today. A count of 300. Often the beginning of engraftment. helps to start healing all of the other problems she is experiencing. |
| 5/14/99 | +24 | WBC | 400 | Today is a rough day. Alison was taken to the Intensive Care Unit at 4:00 am this morning. She is in critical but stable condition at this time. I will update when thing calm down. |
| 5/15/99 | +25 | WBC | 1000 | Yesterday was one of the toughest days of my life (by the way I guess you have guessed that Dad has taken over the journal until Alison is able to again continue updating for herself. I have tried to put my comments in italics. Alison's condition took a terrible turn for the worst at 4:00 am on 5/14/99. Her blood pressure shot through the roof, her pulse was racing at 170 and her sugar level had climbed to 600 (100 being normal). We had to move her next door to Intensive Care. It was touch and go in the early hours trying to get her stabilized. She is at a level of what the would classify between comatose and delirious. She does not know where she is; who she is; or who anyone is around her. I was so worn out I went home and to bed at 6:30 in the afternoon and slept until 7:00 today. Sleep was much need and recharged my but also took away the protective shield of my emotions. I went in to visit Alison early and spent a couple of hours with her. The first half hour I guess I really had a hard time keeping my emotions under control and cried profusely. I probably spent the next hour talking to Alison and doing some visualizations. I talked with one of her doctors for about 45 minutes and it was very good to re-stabilize myself with where she is at this point medically. Her white count increased to 1000 this morning and at this level for an additional day she will be able to come out of double door isolation. Her GVH has been correcting itself a lot overnight and they have taken much of the excess water retention off of her body. Her blood sugar is down to 10 (normal) and they continue insulin to keep it stabilize. We are now just awaiting some resolution to her cyclosporin toxic reaction. It is thought that her current condition is caused by a rare side affect of the drug that has congregated in her white/gray space of the brain. The doctors indicate it is difficult to give us a current prediction of her state. They have only treated 2 cases of toxic cyclosporin and there is only 10 incidences in medical literature. It could resolve itself in days, weeks or months and their is not sufficient case history to predict what may happen in Alison's case. Her kidney and liver functions are still impaired but not critical at this time. They may have to do some kidney dialysis but that is not certain at this time. She is a fighter and will win this set back in her recovery. Linda called at 3:00 PM and said that Alison has been keeping her eyes open for a longer period of time. Prior to this she has only kept them open for 1 second every 30-45 minutes. |
| 5/16/99 | +26 | WBC | 2400 | It is 1:30pm and I just got back from the hospital. Alison is much more awake today and beginning to become conversational. It is so difficult for her to breath with the tubes down her throat. She is beginning to recognize people and places. She has been having difficulty breathing and we feared we would have to put her on the ventilator early this morning. She has been doing better but is still on 100% Oxygen at this time. Alison's white blood cell count continue to raise which both exciting and encouraging. Her bilirubin increased a bit today and remains about 5.7. There is again some evidence of jaundice in her skin but only slightly. Almost all of the GVH has disappeared from her skin and she is looking physically beautiful. It is still a long uphill struggle for her, for today her breathing is what is being worked on most aggressively. . 7:27PM - I just got back from the hospital for a bit of dinner. Alison continues to breath on her own all day. She is alert (maybe too alert, as we can not get her to drift off and go to sleep). She is quite responsive and we have had some rather lengthy conversations. It is so difficult for her to talk with a tube down her throat into her stomach and an oxygen mask on. When I went home for a nap around 2:00 PM she had been asking for me. When I got back I was talking to her and told her she had scared the heck out of me. She mumbled something to me and I could not understand her. I put my ear close to her mask and could clearly hear her say "how did I scare you?". I told her the story of what happened to her on Thursday and how she ended up where she is today. We brought back pictures of Max (her dog) and her stereo so we could play some music for her to help her relax. Linda is going home tonight and I will be spending the night at the hospital. I will update again sometime tomorrow as there are not any phone connections available in ICU. |
| 5/17/99 | +27 | WBC | 4100 | Noon - Alison had a rough night but also had some gains. She had Ampho last night. In the ICU they drip it in over 6 hours instead of 2 hours. She went into shakes and did not respond well to the Benadryl. She shook from 10:00PM until 2:00 AM. She was also running a fever so they were unable to put any blankets on her to help with the chill. I went to get some rest at 2:00 am and when I returned they had her restrained to the bed. She had been fighting and pulled the suction tube from her throat. She also was on a water blanket to help drop her temperature. Her temperature had been as high as 40 Degree's C. On the brighter side Alison is breathing easier and they have dropped her to a 50% oxygen blend. Her absorption rate is doing well They also took her off of her blood pressure meds. She is maintaining normal blood pressure levels on her own. The primary area of concentration today will be working on getting her electrolytes back in balance. The doctors said this could assist in removing some of the confusion she is feeling. This morning she appears to be in more pain so they are to increase the pain meds and hope she is more comfortable. |
| 5/18/99 | +28 | WBC | 4100 | Yesterday afternoon was a rough one for Alison. Her breathing became very shallow and painful. The doctors performed a bronchoscope (sent a camera down into her lungs). There was a fear that they would have to ventilate her immediately following the procedure. The good news is that all looked well and they were able to drain some fluids off to be sent to the lab to be cultured. Alison was given some medication last night to help her breath better. She slept quite late this morning. I was with her from 5:00AM until 9:00AM when she finally awoke. She was very conversational and breathing much better. They were able to take her oxygen mask off and she has done well breathing about a 35% Oxygen blend. On the brighter side her counts have climbed again and she has been taken out of double door isolation. On the negative side her kidney function continues to decline and she will be placed on a mild form of kidney dialysis. This will be a continuous blood filtration system and will probably remain in place for the next 72 hours. Linda (her Mom) is going home tonight and I will be staying overnight with her. |
| 5/19/99 | +29 | Alison was very agitated last night. They tried to begin the dialysis but were unable to continue due to her agitation. She was running a fever again last night that they were able to control with Tylenol and the chill blanket. She also had Ampho. The nurse last night was really good and agreed to administer it over 2 hours and use all the pre-medications she used to use in the BMT ward. She did great and only had minor chills. Ray, Alison's fiancée, has been with her almost continuously for the past 5 days. He is worn out and has not had much sleep. I called him to tell him that she settle down last night. He did get about an hour or two sleep and is looking a bit better today. Early this morning they administered Midazolam Hydrochloride (Versed) on an continuous drip to sedate Alison and allow her to rest comfortably. It was their intention to begin dialysis this morning just after rounds. Alison's kidney function increased slightly last night and they have decided to hold off on dialysis for the moment. It appears that if Alison remains stable or improves they will be allowing her to transfer back to the BMT Ward tomorrow. She is not able to talk yet but should be getting there in the next week or so. |
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| 5/20/99 | +30 | Alison remains stable and in guarded condition. She has been remaining in a coma / less than awake state. She does open her eyes once in awhile but has not spoken for about a day or two. They are planning on doing a MRI sometime today There is so much with toxicity from they drugs that they just can not predict when she will pull out. She remains comfortable. They did find today that she has a fungus infection in her lungs. They will continue to treat it with Ampho. More later. |
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| 5/21/99 | +31 | WBC | 3100 | Today Alison was a little more conscious. She is now able to keep her eyes open for periods of time up to 5 minutes. She is still in a delirium stage. With her condition there will be periods of improvements and lapses, hopefully she will continue to trend upwards. We were really lucky today. Alison was permitted to transfer back to 2 North (The Transplant Ward) YEAAAAA!!!!! I tell you it is like being back at a 5 star resort. Alison is much more comfortable and resting peacefully. This evening I began bring back all of her belonging to her room. We hope that all of the pictures and familiar nurses and staff will help in her recovery. It will probably be a while before she is again able to get back on the telephone and Internet. Believe me, she loves all the support she has received from her friends and family. |
| 5/22/99 | +32 | Alison is back in 2 North. It is really great being back and having all of her familiar things. Alison slept most of the day and had her medicines. Ray spent the night so he could help take care of her. She got a new $70,000 super duper bed today. She floats on a flowing mixture of air and beads that are designed to prevent bedsores and control her temperature more easily. Alison woke up around 8:30 PM and was really talkative. She chatted and even sang Ray a song. Poor Ray did not get to lay down until about 5:30AM. |
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| 5/23/99 | +33 | Alison had a pretty good day today. She is much more awake and beginning to communicate. We often have a tough time figuring out what she is saying to us but she is regaining her mental status and her sense of humor. We shot a couple of photo's of Alison tonight. Respecting her wish, I have only published the ones she specifically said were OK. As I am typing this journal tonight (10PM) I asked her if she would like to add some comments. She said - "Tell everyone I love them and to pray for me. I am very lucky to have such good friends and family" |
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| 5/24/99 | +34 | Sorry I have not updated this in a couple of days. I had updated the web on 5/23/99 from the hospital, but when I uploaded it crashed the complete web site and I have been working on rebuilding Alison's site. Monday morning they removed the tube down her throat. It is much more comfortable for her but we have to watch her closely now so she does not choke on her own vomit if she gets sick. Alison was up most of the night on Sunday and I really did not have any sleep. She had gotten sick at 3:00 AM and we had to bathe her and change the whole bed. She is gaining longer periods of consciousness and talking for longer periods of time. She does have periods of confusion and agitation. Ray spent the night taking care of Alison on Monday night. About 8PM Alison became very agitated and couldn't be calmed down. Ray called and asked that I come back to help calm her down. She was really confused, probably related to some of the drugs they gave her for buffering her Ampho treatment. |
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| 5/25/99 | +35 | WBC | 3100 | Ray said that they didn't get any sleep again last night. Alison had him up redecorating the room and singing songs. She calmed down from the agitation and was quite relaxed for the evening. I lifted Alison out of her bed for the first time today. She was able to sit upright in a chair for about 10 minutes. We were hoping to get her into a wheel chair, but she got very exhausted. Alison drew a little on a pad later today and signed her name. She has really been tired today and is getting some much needed rest this evening. For all of us I hope Ray, Alison and I get a good night sleep tonight. |
| 5/26/99 | +36 | WBC | 11,000 | Alison has been continuing to get better. She is still a little confused at times and really tired. Today I got her out of bed and into a wheelchair. She stayed up for about 4 hours and then got back in bed for a little nap. Alison's mom came up to spend the evening with her today. She had her up in the wheelchair for awhile. The doctors removed the iv line from her leg and the catheter she had been using. She was able to get up with help to use the bedside toilet. Alison got a real boost in her white cell count. She was given some more of the AT3 which stimulates the production of white cells. Alison's kidney's are doing a little better but are still impaired and working at about 30% of normal. |
| 5/27/99 | +37 | Physically Alison is making great strides. She was out
of bed and into a wheel chair early.
We went for a walk and bumped into the physical therapy folks. She invited Alison up to the PT Gym. Alison was able to stand on her own and play catch with Mindy, her sister. Alison was quite tired after PT and rested most of the afternoon. Alison is still having problems with the effects of the psyclosporin on her thinking. She still has periods of hallucinations and disorientation. Alison was able to get up and take her first bath today. She really enjoyed it and was able to get into and out of the tub without much assistance. |
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| 5/28/99 | +38 | Not much new today. Alison had a new drug last night
which was to help with her sleeping patterns and possibly helping her with
hallucinations. She was worn out all day and was delusional most of
the day.
Alison thinks very straight most of the time but sometimes gets very confused. She is having trouble separating her dream states from reality. At this point we have had to shut her telephone off to help with her confused state. The doctors have been dropping her pain medication daily and she has been able to tolerate the reductions. She has also been switched off of Ampho to a different anti-fungal in pill format. Physically she may be able to leave the hospital as early as next week. The doctors did not want to promise anything but said they are quite pleased with her. |
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| 5/29/99 | +39 | Alison had a fairly restless night last night. Ray
spent the evening at the hospital with her. They were both able to
get some sleep but were both very tired this morning.
The doctors shifted her to a pill form of her anti-seizure medication this morning. It is really great to see how many IV medications they have taken her off of. |
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| 5/30/99 | +40 | Alison was given a medication call Haldon last night to assist
in getting her mind clear. We are not sure if it has caused an
opposite affect or if it is something else going on. Alison has
lapsed back into a very confused state closer to comatose than to
awake. She drifts in and out generally not able to keep her eyes
open for more than 15-20 minutes.
She is comfortable and stable. We asked that they take her off the Haldon to see if it has any effect. |
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| 5/31/99 | +41 | Alison remained extremely exhausted and in a near sleep
state. After investigation we found that she had been given an extremely
heavy dosage of benadryl last evening while having a transfusion. I
have asked the doctors to remove the benadryl and try just Haldon over
night.
About 7PM tonight Alison woke and was much more clear. She sat up in bed and chatted for a couple of hours. Although she is still confused she is at least able to stay awake. She was scheduled for a MRI but we had to discontinue when she became very claustrophobic and agitated. They may try again tomorrow under general anesthesia. |
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| 6/1/99 | +42 | Alison woke up very alert and active today. She was
not permitted to take any liquids or food this morning as they were
preparing her for the MRI. After 11:00 we finally found out that
they only do MRI under anesthesia on Thursday's. Oh well.
Alison met with the Director of Rehabilitation this morning. We are in discussions about possibly moving her to the Rehab Section of the hospital after she is released from the transplant ward. We are concerned that her motor skills and current mental confusion might be too impaired to safely live in a home environment for a couple of weeks. Physically Alison is looking great and the transplant seems to be taking hold quite well. |
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| 6/2/99 | 44 | Well Rehab hospital is currently on hold. Alison is in
isolation with a Rhyno Virus. It is the most common cause of diarrhea.
Seems like there are 3 cases on the ward.
Today they have taken her off of most of her mind altering drugs. |
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| 6/3/99 | 45 | Still looks like Alison will be getting out of the hospital
some time within the next week. It is not clear where she will initially
go. She will need quite a bit of Rehabilitation to relearn all types of
things from walking and stair climbing to cognitive skills
The hospital has begun cutting back on her liquid IV food to get her to begin eating on her own. She suddenly had a hunger attack tonight and was craving everything from Taco's to Chinese Chicken Salad. Alison will not be able to eat anything from fast food establishments for about a year so what we could feed her was limited. She had to settle for Ice Cream and Steak. |
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| 6/4/99 | 46 | Alison had a really good day on Saturday. Her appetite
continued to come back. She was able to eat Breakfast, Lunch and Dinner.
Since she has been shifted to most of her medication in pill form she was disconnected from all of her pumps today for most of the day. She will still have to be hooked up at night for IV feeding until she is able to take more calories in by herself. She had a visit from the Cardiologist today. It seems that she has been showing some unusual heart murmurs. They will be monitoring her closely and my have to put her onto Beta Blockers if they persist. It is also possible that the meds she has been on my have caused them. Still looks good for getting out of the hospital next week. Alison's diarrhea has subsided and no longer tests positive for the virus. She will remain in isolation for a couple more days. |
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| 6/12/99 | 54 | . | Sorry I have not logged on in about a
week. I had to go back East on business.
Alison continues to progress. She is now out of isolation and able to move around the hospital as long as she wears a mask. Actually it is expected that she will be released from the hospital on Monday June 14, 1999. She will not yet be able to come home, but will be released to the Ronald McDonald House. We hope that the stay there will only be a couple of days. Alison's bone marrow transplant seems to be doing really well. The damage to her brain may take a long time to resolve itself. Her motor skills are coming back slowly but she can walk short distances. Her short term memory is still in a confused state and her memory in general is limited. We are not yet aware of how or when this will be resolved. Rehabilitation will begin once she is at my home. |
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| 6/13/99 | 55 | Looks like tomorrow Alison will be able to leave the hospital. Her counts are solid and she is feeling well. We will probably have to go to the Ronald McDonald House for a week until she is able to handle stairs and home safety. | ||
| 6/14/99 | 56 | Alison was released from the hospital today. See the new pictures in the photo album. We started with the discharge about 8:00 AM this morning and were finally released about 3PM. Dad had to be trained in the pumps and all of the prescriptions (17 in all) | ||
| 6/15/99 | 57 | WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutroph |
4.5
3.36 10.3 30.0 89 30.5 34.2 13.5 25 3.3 |
Well the first night at the Ronald McDonald House went
pretty well. They are running 1.8 Liters of hydration fluid into her
each evening. needless to say she was up about once an hour to go to
the bathroom.
Today we had our first visit back to the hospital clinic. The Nurse Practitioner reviewed all of the medications and the symptoms to look for. |
| 6/16/99 | 58 | Today Dad took me home to Sunnyvale for the first
time. We tried out the stairs and I did pretty well. It really
took a lot of energy to navigate them but I did great.
From the drugs I am hungry all of the time and can think about nothing except food. I have to drink about 7 bottles of water a day and am not yet able to get that much down so will have to continue on with hydration for awhile |
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| 6/17/99 | 59 | We had another visit to the Clinic today. Regular
doctors time I guess. We went in at 9 and did not get out until
1:30. My Hickman has been having some problems. It is able to
infuse liquids but they can not draw blood from them. Probably a
clot. They had to stick me for blood tests today. Wasn't a lot
of fun as the phlebotomist missed my vein 2 times and we had to get a new
nurse to get the blood test on the third try. They put a fluid in my
line to dissolve the clot.
After the doctors appointment we went to Dad's house for the afternoon. The doctor has released me from Ronald McDonald's House to come to Sunnyvale to Dad's house on a full time basis. |
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| 6/18/99 | 60 | Moving day at last. We loaded up the car with all of
my belonging and went to Dad's.
Aunt Isa has arrived from Scotland to assist in taking care of me. I had an appointment with the Rehabilitation People today. I have a lot of work to do on Speech, Physical Therapy, Occupational Therapy, and my mind is still playing games on me. |
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| 6/19/99 | 61 | Saturday at last. Alison slept in for a couple extra
hours this morning. She had an appointment with Physical
Therapy. They did some exercise and an assessment of what work she
will require. She has problems with her left side so additional work
will have to be done to bring this up to normal.
Alison is still having hallucinations and delusions. She has a lot of problems with short term memory and orientation. She often finds it difficult to find her bedroom or the bathroom. |
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| 6/20/99 | 62 | Father's Day. Today we had a barbeque for Dad and Grandpa Charlie. It was really a lot of fun. We had barbequed chicken and potato salad, vegetables and a really good cheese cake. | ||
| 6/21/99 | 63 | Alison gave me quite a scare this morning. I awoke to find
her missing from her bedroom. I have been sleeping in her room with
her and had seen her just 30 minutes before. She had gotten a pair
of scissors out and had cut her transfusion line and gone for a walk.
When I went down stairs the front door was unlocked (my heart dropped). Fortunately she responded when I called and was in the bathroom. She did not remember cutting the lines or why she was down stairs. Needless to say a deadbolt went on the door and her room was cleaned of all scissors and sharp objects. Alison had an appointment with her doctor again today. Her Hickman line is not drawing again. The did an x-ray line study and found that she has a small clot forming on the bottom of her line. They will be working with this later this week. |
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| 6/22/99 | 64 | Alison still is quite disoriented and at times a bit testy
to deal with. She gets hung up on a particular problem and obsesses
about it.
Ray is off for the day and will be spending the day with her. She has a 2PM appointment with physical therapy. |
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| 6/23/99 | 65 | Alison's mom came to visit today and brought Max (Alison's
Dog) up for a visit. Alison really enjoyed the visit but we had to
cut the visit short as she began running a fever.
After some Tylenol her fever broke and she began feeling a little better. Hopefully it was just a little bug. Alison had appointments with Physical Therapy and Speech Therapy today. Tomorrow will be a long day at he hospital. She begins at 8:00 and will probably not get out until later afternoon. She has to have another x-ray of her Hickman Line (It is still not drawing). Followed by an IV of a drug called IVIG. Finally she has to have a Bone Marrow Aspiration (that she is not looking forward to). There are new pictures today of Summer's visit and her visit with Max. |
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| 6/26/99 | 68 | Alison wrote the following in her manual journal
today. This is her first step in getting back up to speed. She has
also been on the internet and is answering some of the 280 messages she
had waiting for her.
Saturday - June 26, 1999 I woke up at 7:30 A.M. then took a hot bath. Then brushed my teeth. Then I got dressed in my Calvin Kline Jeans. Then I went to my Kitchen ate a bear claw for breakfast with tea.. Then Iain, Aunt Isa and I ate lunch on the back porch. I received a bag full of get well cards - so we all read them and decided what thank you cards need to be sent back. |
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| 7/4/99 | 69 | Sorry I have not been posting lately. I am working on getting better. | ||
| 7/7/99 | 70 | Yesterday I had a
neuro-psychological examination in Palo Alto. I stayed almost three
hours taking one test after another. That made me really tired after
answering so many repetitive type questions. I have had to do allot
of therapy since I have been getting better.
The Doctors say that this illness was brought on by the drug cyclosporin. I talked with the Doctors and they said it probably is built up in the soft tissue in my brain. The other day Ray came over to offer some comfort to me, because he knew I had a rough day, so he took me to cocoa's and bought a apple pie for me. I had him stay the night since I was really bothered with all the chaos going on in my life. Ray was a sweetheart by tucking me in like how my dad does. I thought to myself how lucky I am to have two wo | ||
