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Nicholas'
Journal August 2005
August
31, 2005 Wednesday - (Day +272) Outpatient - (Day 229)
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August 29, 2005 Monday
WE HAVE NUTRAFILLS = 13,700
WHITE BLOOD CELLS = 14,400
RED BLOOD HEMATOCRIT = 36,900
PLATELET = 99,000
BILLYRUBIN = .1 |
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August 30, 2005 Tuesday
WE HAVE NUTRAFILLS = 12,400
WHITE BLOOD CELLS = 17,200
RED BLOOD HEMATOCRIT = 35,700
PLATELET = 95,000
BILLYRUBIN = .1 |
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Nicholas did very well in the hospital for
the last 2 days. He has had the nurses and staff laughing at him all
of the time. The doctors just keep on saying that he is just a
miracle and enjoy just being in the room to listen to him talk,
laugh, and dance. Nicholas was rocking out so much yesterday that
the tech could not get a blood pressure on him because it was so
high that they came back later to do it. lololol... He is just so
full of energy and feels so good it is a miracle. Nicholas acts
better and feels better with every round of chemo and he only has 2
more left. He has been started on retuxin to combat the remaining
warm glutins that are left. He will get this once a week for 3
weeks. His retic numbers are lower, but still do show some signs of
hemolisis. The doctors are hoping that these last 2 rounds of chemo
and the retuxin will do the trick. We are back at the hotel now for
our outpatient stay. The doctor told us yesterday that we may get to
go home next Tuesday or Wednesday for 5 days as long as his blood
shows signs of recovery from the chemo, and he continues to do so
good. Please continue to pray for the recovery of Nicholas and we
get to go home next week.
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August
28, 2005 Sunday - (Day +269) Outpatient - (Day 226)
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Here he is on Sunday morning wound tight. He woke
up at 5:30 this morning and jumped out of bed and said "come on
daddy" and then proceeded to tell me he wanted to go for a
drive and see the snow cone machine. He informed that Santa will
bring presents and his Teletubby custard machine. He is so funny!!
Well, we are going to go play. We are all at home
packing for the trip to Utah for another round of chemo that starts
tomorrow. I will leave at midnight tonight for the 10.5 hour drive
so I can be there at 12:00pm tomorrow to pick up Nicholas and his
mother from the airport where Angel Flight will be dropping them
off. The drive is long and hard, but this will ensure us that we
have a car during Nicholas' outpatient care to get him whatever he
needs. Please pray for another successful round of chemo and that we
get to bring Nicholas home again soon.
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August
27, 2005 Saturday - (Day +268) Outpatient - (Day 225)
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Here he is up and at 'em at 6:00am this Saturday
morning wanting to watch the big TV and drink his coffee. He is
already wanting to watch the Doodlebops to sing along and dance with
them. He is on a run already this morning. Nicholas and I both took
a 3 hour nap this afternoon and it was just enough to re-charge our
batteries. He was then on go until we went to bed at 10:00pm. He is
still getting stronger and talking everyday. Please continue to pray
for his recovery and that the chemo goes well on Monday.
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August
26, 2005 Friday - (Day +267) Outpatient - (Day 224)
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Nicholas has had a great week so
far at home. He has had a lot of fun getting back to his routine. He
is just full of it everyday, talking, singing, and dancing. His
speech is better than ever just chattering all of the time. It is so
cool to be able to completely communicate with him and he tells us
what he wants. He is so full of energy and always wants to be on the
go. He rode his trike today and did not want to quit until it was
time to go to McDonalds for chicken nuggets. He fell asleep at
9:00pm and was up and at them at 6:00am in the morning. It is so
wonderful to have him home and feeling so good. Please continue to
pray for Nicholas and his continued recovery.
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August
22, 2005 Monday - (Day +263) Outpatient - (Day 220)
WE
HAVE NUTRAFILLS =
WHITE BLOOD CELLS = 14,000
RED BLOOD HEMATOCRIT = 36,100
PLATELET = 76,000
BILLYRUBIN = .2
We get to go home again for a week this
time!!!!!
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We drove in very late last night to
arrive in our hotel room in Salt Lake City. Nicholas is such a good
traveler and had a lot of fun. He woke up this morning just wound
tight. He is so funny!! After visiting with the doctors and they are
very impressed with his numbers and said that they know that his
blood is recovering from the last dose of chemo that we can go home
for a week if we want. We need to be back here for round 4 of 6 his
chemotherapy on Monday morning. The blood bank did the work up on
his blood and said that there is still some evidence of warm glutins,
but there is no more than last week. This is good it is not getting
higher.So, we are out of here. Will be on our way home to Idaho in a
couple of hours. Please continue to pray for Nicholas and please
pray for his blood to continue to do very well.
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August
21, 2005 Sunday - (Day +262) Outpatient - (Day 219)
On our way back to Salt Lake City from our
mini Vacation!!!!!
August
18, 2005 Thursday - (Day +259) Outpatient - (Day 216)
WE
HAVE NUTRAFILLS =
WHITE BLOOD CELLS = 12,000
RED BLOOD HEMATOCRIT = 33,800
PLATELET = 45,000
BILLYRUBIN = .3
On our way home to Idaho for the
weekend!!!!!
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We had an awesome visit at the doctor this morning
and we are released for the weekend to come home. Mom, Nick and I
are loading up in the car right now to hit the road. We should be
home around 11:00pm tonight. The bug that he has in his tummy will
have him on antibiotics for 6-8 weeks. It just causes diahreah and
an upset tummy. He has been doing pretty good on the meds so please
pray that it continues.
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August
16, 2005 Tuesday - (Day +257) Outpatient - (Day 214)
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Look at me now!!! Woke up this morning and trucked
down to daddy's room on my trike and want to go to "Starbucks,
McDonalds, and Old Navy" What a sweetheart. "Lets
Go!!" He is doing great. I will update again later.
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August
15, 2005 Monday - (Day +256) Outpatient - (Day 213)
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HAVE NUTRAFILLS = 3,700
WHITE BLOOD CELLS = 4,000
RED BLOOD HEMATOCRIT = 34,000
PLATELET = 15,000 getting transfusion PLATELET
= 135,000 after transfusion
BILLYRUBIN = .3 Still going down
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Nicholas had another great Dr. Appointment. His
blood work up was great especially for in the peak of the chemo. The
chemo knocked his platelets down, but the rest of his blood work is
holding strong. The Doctors are going to do a major blood work up on
Thursday to look for the warm glutins and anything else that they
may need to find. Nicholas is getting stronger everyday walking more
and more on his own. He wants to go , go , go now which is
great. Here Nicholas grabbed my keys after his nap and told me to
"go for a ride in daddys new car." He loves to go out and
do things which beats a hospital or hotel room any day. I am so
grateful that he is feeling so good. Please pray for the continued
recovery from the hemolisis.
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August
14, 2005 Sunday - (Day +255) Outpatient - (Day 212)
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It is Sunday morning and Nicholas woke
up in a great mood. He has been riding his trike back and forth to
and from his moms room and his dads. He loves to wear his helmet
while he rides. He wants to go for a ride in the car this morning,
has on his star shoes, trike loaded with toys, and ready to go. At
the last visit to the doctor he was given a motorcycle DVD that he
loves and he decided that he needed a motorcycle, so mom bought one.
He is still not sure of it, and I think that we need to find
training wheels for it. This last couple of days when he is
ready to go he hops off the bed and puts his star shoes on all by
himself. He runs the DVD player, and changes the DVD's all by
himself. He loves to sit on the bed to start the DVD player with the
remote. Well, he is ready to go so I will update later. Please pray
for the continued success of Nicholas' recovery.
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August
13, 2005 Saturday - (Day +254) Outpatient - (Day 211)
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Nicholas woke up this morning in his Mom's room and said
"where's daddy, do you see him." He called me on the phone
and I went to his room right after to get a big hug. He has been
wound since. We went to Starbucks for his morning coffee, then to
McDonalds to get his lunch and back to eat all of it, well almost
all of it. After he wanted to go for a ride on his trike and a
"ride in daddy's new car." We drove around for about 45
min and back to the hotel we came. He has just felt great all day
and is full of energy. His speech is getting better everyday. He
just talks about everything. Today Nicholas felt comfortable for the
first time walking on his own without holding on to anything. He
made 5 trips from one side of my room to the other without holding
on to the counter or the wall. His legs are getting stronger
everyday. He has been a giggle bug this last week, and it is so
funny. He will be watching a movie that he thinks is funny and he
will start to giggle. It is so cute and funny. He is extremely
happy, and he is doing better everyday!! Please continue to pray for
his strength, and his health.
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August
12, 2005 Friday - (Day +253) Outpatient - (Day 210)
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I just had a bath and I am hanging out in daddy's
room. Look at me I am so cute in my wiggles jammies. Nicholas ran
and played all day. He is doing very well with his talking, walking
and riding his trike. He likes to go and ride in daddy's new car and
get out of the hotel to do some sight seeing, and of course stop at
McDonalds for dinner. He is just doing great!! Please pray for the
continued recovery of Nicholas.
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August
11, 2005 Thursday - (Day +252) Outpatient - (Day 209)
WE
HAVE NUTRAFILLS =
WHITE BLOOD CELLS = 9,600
RED BLOOD HEMATOCRIT = 32,000
PLATELET = 67,000
BILLYRUBIN = .4 Still going down
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WOW!!!
Nicholas had a great doctors appointment this morning. He started
his nupegin to keep his bone marrow strong during the downside of
the cytoxin for the next couple of weeks. He was much happier at the
office, and then wanted to go back to the hotel and bake cookies. We
went outside for a ride on his trike and he loved every minute of
it. He is getting stronger everyday and is doing some walking on his
own without holding on to anything. He is still very careful when he
walks, but the doctors said that they think that he will be running
around in just a couple of weeks now. His speech, energy, and
strength is doing so good everyday that it is hard to believe. I am
so glad that he is doing so well. The doctors are also so pleased at
his recovery and are still cautious with his blood not wanting the
hemolisis to come back at all. The doctors will do an extensive
blood work up next week to try to find out where his blood is and if
there is any more warm glutins. If so, they will start another drug
for this and it should take care of it. Please pray for the
continued recovery of Nicholas and that his blood continues to do
well.
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August
10, 2005 Wednesday - (Day +251) Outpatient - (Day 208)
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Look at me now!!!
Nicholas woke up this morning and hopped off the bed. He wants to
go and play, ride his bike, go to McDonalds, and Starbucks. He is
very full of energy and wants to do everything "by self."
He loves to ride his trike down the hill in front of the hotel. He
has been singing and dancing to his videos today and sometimes he
really gets to rockin out. There is nothing to stop him. If you did
not already know that he had chemo on Monday you would not believe
it. He continues to gain weight, and has a big appetite for chicken
nuggets with ranch dressing. He is getting around better everyday on
his feet, but he still needs to hold on to things to keep his
balance. This will come over time. Riding his trike has really
helped out the strength of his legs. He started to giggle last night
like he has not giggled for a long time. It is very nice to see our
Nicholas back in full force. Please continue to pray for our
little man. We still have 3 rounds of chemo left, but 3 are already
done. Keep up the good work Nicholas, we love you!!!
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August
08, 2005 Monday - (Day +249) Outpatient - (Day 206)
Round
3 of Cytoxin today!!!
WE HAVE NUTRAFILLS = 12,400
WHITE BLOOD CELLS = 15,3200
RED BLOOD HEMATOCRIT = 36,000 Up, and Up
PLATELET = 76,000 Up
BILLYRUBIN = .5 Down, and down
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Here is some of
the weekends pictures of Nick!!
It is Monday morning and we are
getting ready for another round of cytoxin. Nicholas had a very good
weekend playing and making many trips to McDonalds for lunch and
dinners. He will be admitted this morning and will get the chemo,
IVIG, and a medicine for him to help him heal his bones due to the
excessive steroids that he has been taking. His counts are higher
now than they have been since about April of this year. His blood
has really built, and his strength has really increased also.When
everything gopes well we should go home sometime tuesday afternoon.
Please pray for the chemo to take well and Nicholas not get sick so
we can go home.
Update:
Tuesday morning: Nicholas
did great with the chemo last night after a little water retention
he was great. We are on our way home and you would not know that he
even had chemo yesterday. He rode his trike for a couple of hours
riding up the hill and zooming down it. He did not even get a nap.
He giggled like I have not herd him giggle for a while now. He was
in an awesome mood tuesday night went to bed laughing and watching
TV. He is just so strong it is very great. Please continue to pray
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August
05, 2005 Friday - (Day +246) Outpatient - (Day 203)
The
numbers are still, still, still going up all by self!!!
WE HAVE NUTRAFILLS =
WHITE BLOOD CELLS = 12,200
RED BLOOD HEMATOCRIT = 34,000 Up, and Up
PLATELET = 69,000 Up
BILLYRUBIN = .8 Down, and down
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Nicholas had another great appointment today. His numbers are still
going up and he is still eating more everyday. The doctors told us
that he will go through all 6 rounds and we will have to admit him
for 24 hours on Monday so he can get his 3rd round of cytoxin. The
doctors would rather have him on cytoxin than the steroids that he
is currently on. We are starting the steroid taper today for the
next couple of weeks. Soon he will only be on the steroids 1 time a
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to go home for the weekend in the second or third week or so of the
cytoxin. He is going into this round of cytoxin a lot stronger and
with much higher numbers, so maybe he will not drop as much and
maybe he will not even need a transfusion during this session.
Nicholas' brother Mitchell will be flying home tomorrow back to
Lewiston and Nicholas will miss him. Please continue to pray for
Nicholas and his recovery. We hope to be home soon.
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August
03, 2005 Wednesday - (Day +244) Outpatient - (Day 201)
The
numbers are still going up, and up, and up, all by self!!!
WE HAVE NUTRAFILLS =
12,000??
WHITE BLOOD CELLS = 15,800
RED BLOOD HEMATOCRIT = 30,000 Up, and Up
PLATELET = 52,000 Up
BILLYRUBIN = .9 Down, and down
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Look at me know!!! Look at my great numbers!!!
Nicholas had a wonderful appointment today and we
are good now until Friday morning. His blood continues to go up and
so do his platelets. This means that there is more construction of
red blood cells and platelets than destruction due to hemolisis. The
doctors told us yesterday that they want to do all 6 doses of
cytoxin and we are only on the second with the third to come on
Monday because they do not want this to come back. We were also told
that Nicholas is the only one that has lived through this hemolisis
and they want the cytoxin to do its job for |
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| good so it does not come back.
Nicholas is doing great and has gained 1 pound in 3 days because of
all of the cheese, coffee with creamer, and chicken nuggets that he
eats. The feeds have been reduced to 12 hours instead of 22 hours
because he is getting his calories during the day. He is getting
stronger everyday and is walking better all of the time. He likes to
go for rides in daddy's new car and get out of the hotel. It is so
awesome that he is doing so well, and please continue to pray for
his recovery.
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August
01, 2005 Monday - (Day +242) Outpatient - (Day 199)
The numbers
are going up, and up, and up, all by self!!!
WE HAVE NUTRAFILLS =
12,000 (4am) Very strong
WHITE BLOOD CELLS = 15,000 (4am)
RED BLOOD HEMATOCRIT = 22,800 (4am) Up, and Up
PLATELET = 31,000 (4am) Up, and Up
BILLYRUBIN = 1.0 Down, that is great!!
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| Wow, wook we
are going home....Wow!!! Lets Go!!! Nicholas could not wait to get
out of the hospital and go to the hotel. The doctors were not even
ready with the discharge papers when Nicholas headed down the hall
and did not look back. He was on a mission to get out. His red blood
hematocrit and platelets went up again all by itself. This is a
great sign that the hemolasis is weakening. We do not even have a
doctors appointment tomorrow, not until Wednesday. Nicholas' legs
are getting stronger everyday, but he is wanting them to be stronger
right now. We have to watch him because he will just get off the
chair and try to head out not realizing his strength in his legs is
not quite 100% yet. He drove around in daddy's new car and enjoyed
the scenery. He is now in the hotel all set up with his DVD's with
his coffee cup in his hand. What a joy. Please continue to pray for
his recovery, his strength, and the hemolasis to stay under control.
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Nicholas
Ashby Donation Account
US
Bank (714-529-3983)
Or
just walk into any US Bank
Make
a Donation through Paypal:
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If
mailing please send to:
Nicholas
Ashby Donation Account
P.O.
Box 1817
Lewiston,
Idaho 83501 |
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