-
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
Seattle. The donor that was found for me has been denied due to being
too great of a risk for anesthesia during the donation procedure. They
have a less matched backup donor available but have decided to pursue a
more compatible matched donor. This could take three weeks just for the
results plus a couple of more weeks for their physical evaluation. I am
so discouraged right now. All of our planning needs to be undone and then
we have to go through the whole ordeal again in the future. I just don't
feel like I have the energy for it all.
-
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) Only blood draw and
platelet transfusion today. Steve's been getting around better of
late and has not been using his walker for at least three days. Counts:
WBC - 9,240 HCT - 26 Platelets - 23,000
ANC - 8,130 Weight - 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