September 15, 1999
Sixteen years ago, on August 29, 1983, my then 2 1/2 year old son Nicholas was diagnosed with Acute Lymphocytic Leukemia (ALL). He has relapsed 3 times (he is currently in his 4th remission). Chemotherapy is no longer effective and his best hope now is to undergo a bone marrow transplant. This is a daily diary of my experience of my 18 year old son's ordeal as he lives it.
Saturday, April 28, 2001
This evening, Nick passed on
in the same manner in which he lived his life,
With tremendous strength, courage and dignity.
Forever my hero
Nick's funeral will be held
Friday, May 4, 2001 at 1:00pm
St. Angela Merici Catholic Church
585 South Walnut, Brea, CA 92821
Rosary and Visitation
Nick's Rosary and Visitation will
Thursday, May 3, 2001
4:00pm to 9:00pm - Visitation
7:00pm - Rosary
Memory Garden Memorial Park and
455 West Central Avenue
Brea, CA, 92821
If you have any questions, Contact Memory Gardens at the above phone number
To Learn more about Bone Marrow Transplants (BMT) Link to City of Hope
To send Nick Email:
To send Nick regular mail:
To give Nick a call :
To send Karen Email: firstname.lastname@example.org
To send me Email: email@example.com
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If you are interested in donating platelets for Nick, please contact:
City of Hope
Blood Donor / Apheresis Center
Tell them you would like to be a directed donor for Nick.
Thank you so much to you that
have already signed up, and to you that have already given.
Be assured your platelets are going to good use!!!
Shortcuts to Daily Updates
09/15/99 thru 10/10/99 - Getting Ready
10/11/99 - day minus 10...Nick checks in
10/12/99 - day minus 9 ...Nick begins total body radiation
10/13/99 - day minus 8... more rads...
10/14/99 - day minus 7... more rads... strange visitors... just kidding
10/15/99 - day minus 6... finishing radiation
10/16/99 - day minus 5... kicking back... last day in the Village
10/17/99 - day minus 4... new home... bone marrow transplant unit
10/18/99 - day minus 3... mouth sores, but hangin' in there
10/19/99 - day minus 2...Nick is hanging tough
10/20/99 - day minus 1... exchanging plasma... isolation begins
10/21/99 - day zero... bone marrow transplant
10/22/99 - day one...
10/23/99 - day two...
10/24/99 - day three...
10/25/99 - day four... tough afternoon
10/26/99 - day five... saliva ropes
10/27/99 - day six...
10/28/99 - day seven...
10/29/99 - day eight...
10/30/99 - day nine...
10/31/99 - day ten...
11/01/99 - day eleven...
11/02/99 - day twelve...
11/03/99 - day thirteen...
11/04/99 - day fourteen...
11/05/99 - day fifteen...
11/06/99 - day sixteen... improving
11/07/99 - day seventeen... no white cells yet
11/08/99 - day eighteen... waiting on white
11/09/99 - day nineteen... healing continues
11/10/99 - day twenty... and continues
11/11/99 - day twenty-one... white cells found!
11/12/99 - day twenty-two...
11/13/99 - day twenty-three... out of isolation!!!
11/14/99 - day twenty-four...
11/15/99 - day twenty-five...
11/16/99 - day twenty-six...
11/17/99 - day twenty-seven...
11/18/99 - day twenty-eight...
11/19/99 - day twenty-nine...
11/20/99 - day thirty...
11/21/99 - day thirty-one...
11/22/99 - day thirty-two...
11/23/99 - day thirty-three... one big step closer to home!
11/24/99 - day thirty-four...discharge instructions
11/25/99 - day thirty-five... Thanksgiving
11/26/99 - day thirty-six... moving day... bone marrow test results
11/27/99 - day thirty-seven... friends visit at the Village
11/28/99 - day thirty-eight...
11/29/99 - day thirty-nine... more friends visit
11/30/99 - day forty... home stretch
12/01/99 - day forty-one...a little bit of GVHD
12/02/99 - day forty-two...last night at Hope... we hope
Page Four - Homecoming
12/03/99 - day forty-three... fifty-third day at Hope... Nick goes Home!
12/04/99 - day forty-four...
12/05/99 - day forty-five... very good weekend
12/06/99 - day forty-six... GVHD... don't like it
12/07/99 - day forty-seven... good day
12/08/99 - day forty-eight... a little discouraged
12/09/99 - day forty-nine... tough night... methadone withdrawals
12/10/99 - day fifty... half way there
12/13/99 - day fifty-three
12/14/99 - day fifty-four... very noticeable progress!
12/17/99 - day fifty-seven... more medical marvels!
12/20/99 - day sixty... every day a cause for celebration
12/26/99 - day sixty-six... it's been a good week
01/03/00 - day seventy-four... all is well
01/04/00 - day seventy-five... low platelets... unscheduled bone marrow extraction
01/07/00 - day seventy-eight...
01/09/00 - day eighty...
01/12/00 - day eighty-three... Nick's 19th Birthday!!!
01/17/00 - day eighty-eight...
01/23/00 - day ninety-four... not so good of a week
02/04/00 - day one hundred six...gradual progress
02/09/00 - day one hundred eleven... and counting!
02/27/00 - day one hundred twenty-nine...and still counting!
03/04/00 - day one hundred thirty-five
03/22/00 - day one hundred fifty-three
04/11/00 - day one hundred seventy-three
05/08/00 - day two hundred !!!!!!!
05/22/00 - day two hundred fourteen... tubeless and mouth sores
06/24/00 - day two hundred forty-seven... in the hospital again
06/26/00 - day two hundred forty-nine... it's shingles
07/03/00 - day two hundred fifty-six... getting better ... couldn't get
07/10/00 - day two hundred sixty-three... pain is receding... like my hairline
08/15/00 - day two hundred ninety-nine... everything is going well
10/05/00 - day three hundred fifty
10/11/00 - day three hundred fifty-six... a year ago today
10/18/00 - day three hundred sixty-three... Nick is sick
10/19/00 - day three hundred sixty-four... feeling much better
10/21/00 - One Year!!! First Birthday!!!
10/25/00 - One Year, four days... back in hospital
10/26/00 - One year, five days... GVH and scary stuff
10/30/00 - One year, nine days... Home again!
11/07/00 - One year, seventeen days... doing ok... donor contact!
11/22/00 - One year, thity-two days... doing ok... paper thin bones
12/04/00 - One year, forty-four days... tattoo!
12/19/00 - One year, fifty-nine days... Breathless in Mammoth
01/15/01 - One year, eighty-six days... Lung Biopsy Surgery
01/31/01 - One year, one hundred two days... Scary times... can't breath... lung transplant?
02/06/01 - One year, one hundred eight days... thankfully improving!
02/07/01 - One year, one hundred nine days... a very hard day... not good news
03/21/01 - One year, one hundred fifty-one days... bad news... good news... bad news...
03/28/01 - One year, one hundred fifty-eight days... 911
04/02/01 - One year, one hundred sixty-two days... difficult times continue
04/03/04/05/01 - Uncertainty
04/25/01 - One year, one hundred eighty-eght days... a very courageous young man
Funeral Mass Program
Special Song Lyrics
Thank You Card
Pics of Nick Slide Show - May 26, 2001
Memorial Day - May 28, 2001... Remembering
Nick's Tattoo Explained
September 15, 1999
October 4, 1999 will be Day Minus 8...
Yesterday, Nick received a call from the City of Hope. They had found
a donor match and had set the date of October 4, 1999 as the day they would
begin the process of his Bone Marrow Transplant. Sixteen years of history
precede this date. It is a history of courage, hope, despair, fear, tears,
laughter, suffering and triumph. Mostly, it is the history of a very special
and heroic, baby... child... teenager... young man... Hopefully, some of
this history will be shared in these ramblings over the next few months.
Nick had chemo at CHOC this morning. The doctor says this may be the
last since his transplant is now imminent. They are supposed to decide
before next Tuesday when he is scheduled for another round. He is to continue
his daily oral chemo.
When I tell people that Nick has "a donor and a date" they are excited
and happy. I definitely understand these feelings. The anticipation over
the last few months has been tremendous and it helps some to at least now
have a date to look forward to. On the other hand, I am terrified of my
son going down this irreversible road.... I am scared to death.... The
transplant will be successful. Nick will tolerate the procedure well. Nick
will recover and be released from the City of Hope in record time. His
life will get back to normal.... I am still scared to death....
Nick had a pretty good weekend. It's always good when he is home and not in the hospital. He was still feeling a little sick from the chemo on Saturday but felt good enough to go out for a while on Sunday.
Here's a little of what I know about bone marrow transplants. The link at the top of this page leads to a whole lot of good information. Please check it out if you are interested.
Nick will be admitted to the City of Hope on October 4, 1999. This will be 8 days prior to the actual transplant. For these 8 days he will receive total body radiation a couple of times a day. The idea is to kill off all lingering cancer cells and to destroy all his bone marrow. It is important that they get every last cell so that none of his genetic bone marrow exists at the time of the transplant. You can imagine that this condition leaves his body in a very vulnerable state relative to infections and fungi and nasty things that attack our bodies every day. He will have no bodily immunities against these things and it will be up to the doctors and drugs to fight these things off.
On the 8th or 9th day, the actual transplant will occur. I understand it to be generally uneventful. They simply hang a bag of bone marrow on his IV (he has a main line to his heart already in place). The donor bone marrow goes into his body over a couple of hours. In about 16 days after the transplant, they should be able to see some very early indications that the bone marrow is beginning to graft into his system. The first 100 days after the transplant are the most critical. If everything goes well, the bone marrow will graft not too fast and not too slow and be well established at 100 days.
Things that could go wrong include rejection of the bone marrow or various host/donor diseases that cause problems.
The doctors said that some kids have been able to go home in as little
as 5 weeks after the transplant. He told Nick that since he has an unrelated
donor (neither of my 2 daughters or Karen or I matched) that he may take
a little longer and that 2 months would not be an abnormal stay. I am sure
Nick is planning on setting a record and go home in under a month. He is
awfully good at achieving what he sets his sights on. He works very hard
at getting out of the hospital every time he goes in.
October 11th will be day minus 8....
Today we were informed that the start of the bone marrow transplant would be delayed one week until October 11. The insurance company had not yet approved the procedure at the City of Hope. They were also telling us that they were going to require that Nick have some of his pre transplant testing done at St. Jude Hospital and some at Hope. This is really dumb and is absolutely infuriating. We want him at the City of Hope and they keep sending us to CHOC, other labs, other facilities... all at the direction of the insurance company and what is most cost effective and convenient for them. Very frustrating.
Anyway, they called back later today and said everything would be done
at Hope now. Who knows? We think the extra week will be ok. Nick needs
dental work that they have to do before the transplant.
5 crowns in one sitting!...
When things happen, they happen fast sometimes. Nick spent the day in the dentist chair today. He was taken by the dentist on an emergency basis. They did 5 crowns! Tomorrow he goes for consultation to have his 4 wisdom teeth removed. Poor guy! Can you imagine sitting in the chair that long? I hope he survives the dentistry! Needless to say he is in pain and a little grouchy tonight. I am worried about infection now. His immune system is very low and he still is feeling sick from his last chemo.
Even though this dental work was ordered by the City of Hope and required for the transplant, the insurance company will not cover it medically. My dental insurance covers practically nothing. It seems like we should challenge this. But from lots of past experience we know it is futile.
Nick told me tonight.... very matter of factly that .... "his mouth
Nick saw an oral surgeon today. His four wisdom teeth will be extracted
next Monday. His permanent crowns will be cemented in place on October
4th. He is doing well. He says his teeth still hurt but it is bearable.
Otherwise he says he is feeling fine.
September 27, 1999, Monday
... the teeth are in the envelope.
Nick had four wisdom teeth removed today. He was sleeping when I called
so I didn't get to talk to him. I imagine his mouth hurts again. Natalie
told me she knew they were able to do the extractions today because she
looked in an envelope on the counter and was startled to see four, large,
bloody teeth... at least that is how she described them. Nick has an interesting
collection of things that used to be in his body. I don't know what he
has in mind for the teeth.... earrings or a necklace I suppose... maybe
a ring or something to hang from the rear view mirror.
September 28, 1999, Tuesday
... late night hospital run
Last night, Nick started shaking uncontrollably. He didn't have a fever
but he thought one must be coming on. He was also afraid he might be going
into shock. Because of the chemo, and his reduced resistance, he is supposed
to go to St. Joseph's emergency whenever his fever gets above 101. Karen
took him, but right before they got there, he decided it wasn't a fever
and that he was feeling better. They turned around and came home. He says
the crowns still hurt and the extractions are adding to his misery. It
is just a matter of time and he will feel better.
September 29, 1999, Wednesday
getting ready... baseline testing at the City of Hope...
Nick spent the day having a battery of tests performed at the City of Hope... EKG's, nuclear testing, lungs, kidneys, heart, ... They measured him for a lead mask they are going to make to protect his lungs during radiation. He also went back to the dentist. The wisdom teeth are healing fine. The temporary crowns were set too high so the dentist worked the crowns down for awhile. Nick says they are better but still not right and cause him some pain.
He will go back to Hope on Friday for another day of testing and consultations.
October 1, 1999, Friday
Nick spent the day at Hope. He met with the home health nurse coordinator who will be looking after him the first 8 days while he has radiation and chemo. He will be living in "the village" which are little apartments. The coordinator explained his first 8 days of his treatment and what his stay in the village would be like. We also met with the low bacteria diet person who explained the limitations on Nick's diet for the next 108 days.
Nick drank barium at intervals throughout the previous night and through
the morning in preparation for some CT scans in the afternoon. They scanned
his brain, sinuses, lungs, liver and kidneys i think. Monday it is back
to the dentist to have the wisdom teeth stitches removed, and his 5 permanent
crowns glued in. His teeth still hurt and he hopes that when they fit the
crowns they will fit better.
October 4, 1999, Monday
Wisdom teeth stitches were removed and his 5 permanent crowns were set
today... and they finished with a good cleaning. Now his teeth are ready
for the BMT.... they continue to hurt. Nick goes back to Hope on Wednesday
for additional consultations and some routine testing.
October 6, 1999, Wednesday
More consultations at Hope today. Dr. Rosenthal (the BMT Doc) further explained the road map and the time frames involved. Nick signed the various consent forms required for the procedure. After this meeting i am very optimistic Nick can do this.
We learned all we will learn (at least for the next year) about the donor today. He is a 39 year old male that lives somewhere in this world and he will have his bone marrow extracted ("make his donation" they call it) on October 21, 1999. There were 2 other pieces of information that I found very interesting. I compared Nick's HLA type to the donor's HLA type. This is a set of six, six digit numbers. Every digit of every number was an exact match. It was like looking at a winning lottery ticket....... six times!!! We were told that there is also 1 other person out there that is also an exact match!! The doctors had a choice! They say they like that.
But what I found even more amazing, is that Nick is type A+ and the donor is O+. After the transplant Nick will be O+!!! They will do a routine plasma exchange as a part of the treatment. As i understand it, plasma is the fluid that suspends the blood cells. He will be hooked to a machine that will exchange his A+ plasma for O+ plasma. No big deal apparently.... routine. All the bone marrow cells and all of Nick's white cells and platelets and everything else, will also be the donors, after the marrow successfully grafts.
Nick goes in next Monday, October 11. All systems go. Monday will be
a check in day...he lives in the village for the first week. Because it
has been 6 weeks since his last bone marrow extraction they will have to
do one on Monday when he checks in. The doctor discussed his sedation/pain
preferences. Nick has had so many of these. When he was young he did them
without any sedation. When he was at CHOC he did them with minor sedation
and he really didn't like that because he didn't feel like going out with
his friends as soon as he got home. He told the Doc that he has a high
threshold of pain so he wanted the minimum. I still intend to relate to
you, past experiences that show how tough ... and what a hero... Nick really
is. I am sure i will never meet anyone with the courage and strength and
mental toughness of my son. I have said it before, and i will say it again...
he is my hero. Kind of a backwards thing, huh? Nick is phenomenal. No doubt
in mind that if anyone can do this... Nick can. Let's finish with that
tonight... NICK CAN!
today is day minus 10...
Nick checked into the City of Hope this morning. He started the day at the clinic where they drew blood labs and did a bone marrow extraction to verify that he was still in remission. After that he checked into his room at Hope Village. Later he went down to radiation where they checked the lung mask they had made for him to make sure it was properly shielding the lungs. Tomorrow at 7:30am he starts the full body radiation. He will receive 12 doses of radiation over the next 4 days... 3 trips per day. Nick is feeling real good and his counts are good. The pharmacy and the home health nurse came this evening. They hooked up his IV and showed him how to work everything ... how to change bags and give himself injections... He is going to go out to dinner tonight with his grandma and grandpa. This will be his last opportunity for restaurant food for awhile.
...a little more history ... or, how Nick comes to be here...
On February 28, 1997, in the middle of his sophomore year of high school, Nick had a relapse of Acute Lymphocytic Leukemia (ALL). This was after being off of all chemotherapy for 8 years. They say it is unusual to relapse with the same form of cancer after such a long period. He missed the last half of his sophomore year and all off his junior year as he spent one out of every 3 weeks in the hospital receiving chemotherapy for that year and one half. He kept up with his studies and his class on an independent study basis. He was able to go back to school for his senior year and graduate with his class as he continued chemo on an outpatient basis. I am very proud of him for this accomplishment.
Four days after he graduated in June of 1999, he went to the doctor for a routine check up and chemo. His blood labs showed that the leukemia had come back...(the bruises from his belt around his waste had made Nick suspicious)... even as he was being treated with exceptionally powerful chemo. It was immediately obvious to the doctors that a bone marrow transplant was necessary. They spent the next 6 weeks getting Nick back into remission so they could do a transplant. They also began the search for a donor and did a variety of things required to start the BMT. Today, October 11, 1999, everything is starting. Nick has a tough couple of months ahead.
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October 12, 1999, Tuesday
Nick had the first 3 of 11 radiation treatments today. The purpose is to kill off all malignant cells in his body. Unfortunately, a lot of healthy cells are killed as well. Many nasty side affects occur as the radiation doses cumulate. He generally tolerated the day well although after the second dose he had a mild headache and nausea. He slept after the 3rd dose. Tomorrow, 3 more doses. He will remain in the village this week and be transferred to the BMT wing of the hospital on Saturday. Strict isolation will begin around this time. Don't feel like writing much tonight...
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October 13, 1999, Wednesday
Three more radiation treatments today, 7:30am, 11:30am and 3:30pm. He is doing real well... feeling ok, eating well... He has started the low bacteria diet. There is a page at the City of Hope site (linked at the top of this site) that explains the low bacteria diet... He is tolerating the radiation really well. He is half way through with 3 more doses tomorrow and 2 on Friday. He is playing computer games on the laptop and we are watching the ALCS baseball game... Boston and NY. I shaved his chest tonight... so that the bandage around his Hickman would stick better... he was having trouble getting anything to stick. We will see how this works. We are also trying a large derma bandage applied to the shaved chest and then taping to that.
This reminds me that, I am continually amazed, at how much responsibility they put on the patient and the caregivers (Karen and I) for the care of the patient. We are doing all of his Hickman care, IV fluids and pump alarms, injections, administering and charting of medications, charting of inputs and outputs, administration of nausea and pain drugs including inventory and ordering from the pharmacy, preparation of his low bacteria diet....whew... we are kept really busy with this stuff.... it is challenging, a bit scary, and requires a lot of communication.
A home health nurse visits Nick in the Village in the morning and the evening to weigh him, draw blood, take his vitals, see how he is doing, check up on our charting, answer questions, show us stuff we arent sure about.
I am anxious to get more pictures on this site to break up the text a bit and show you Nick and some of the stuff he sees. Look for more pictures coming soon.
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October 14, 1999, Thursday
...Nick gets Nuked ... part III... er 7,8,9
Three more radiation treatments done today... last 2 tomorrow. Nick's nausea is getting a little more intense but he continues to do real well. He hasnt eaten much today. He had a chocolate shake made from 2 scoops of ice cream, a half cup of milk and a carnation instant breakfast. That is all so far, but we'll keep trying.
of his friends came to visit this afternoon. "Shout
outs to..." oh just kidding. I took pictures of the visitors
and will put them on site either friday night or saturday. Look for
your pic guys!... you know who you are. (Update: Here you are!)...
And thanks for coming out...it really makes a huge difference and is a
great diversion for Nick. Three of them that arrived earlier were
able to go down and get a tour of the linear accelerator and watch asNick
gets nuked on the TV monitor. I swear, it looked
like Nick was smiling throught the whole treatment! Not easy to do
when you know you are going to be sicker than a dog when it's over.
The technician said some people even "blow chunks" during the treatment.
When that happens they hit the big red kill button on the accelerator and
take a minute to clean up.
Tattoos... old marrow...
Several months ago when Nick was getting really heavy chemo he came up with the idea that he would like to have the bio-hazard symbol tattooed on him. That symbol looks like this... ... pretty cool huh? Well this week he wants to add the radiation symbol to his tattoo wish list. The nuke symbol looks like this... ...also cool I think. I think these would make a couple of really nice tattoos, uniquely symbolic of important aspects of Nick's young life. What do you think?
When Nick saw the doc the other day they had the following discussion: (loosely paraphrased... :)
Nick: "Hey doc, ... the reason people age is because cells keep reproducing themselves and each time they do the new cell is less vital than its predecessor, right?
Nick: "Does that mean my bone marrow and blood is going to be 39 years old?"
Doc: "Yep... it doesn't get younger when we put it in you... but it won't get you in a bar if that's what you were thinking"
When Nick is 40, his bone marrow and blood will be 61. The doctor said that he may get elderly blood diseases prematurely, but that won't be any kind of problem. This explains to me why they always search for the youngest donor they can find.
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October 15, 1999, Friday - Day minus 6
Nick had his final 2 radiation treatments today. He continues
to tolerate everything extremely well. Karen took over as caregiver
this morning and will remain with Nick until Sunday evening. I will
be taking care of Natalie and Kirsten ... Soccer games, birthday party,
Sadie Hawkins dance ..and life goes on.
Nick and Karen Nick's place in the Village... nice digs
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October 16, 1999, Saturday - Day minus 5
Kicking back, last day in the Village for awhile
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October 17, 1999, Sunday - Day minus 4
At 6:00am this morning, Nick was moved to the Bone Marrow Transplant facility. This will be his home for awhile now as I understand it. He was given heavy chemo today and when I came to replace Karen this evening, he told me he had had a pretty rough day. Very sick... but otherwise no unusual problems, that I know of.
Bone Marrow Transplant Facility Nick at work
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October 18, 1999, Monday - day minus 3
Nick is feeling really sick today. He is getting another heavy
blast of chemo. The doc came in and said that today's chemo is the
last before the transplant. He will not have any chemo on Tuesday
or Wednesday and will have the transplant on Thursday. His tongue
is as white as a sheet and appears to have an ugly, thick white plastic
coating with a few sores. The doc said his mouth will likely get
worse before it gets better.
Nick had oncology radiation previously in his life. It was right before Christmas, the month before his 3rd birthday. At that time he had 14 treatments over 14 days to his brain only. I remember on Christmas Day, Nick was very lethargic from brain swelling. He wanted so badly to be energetic and enjoy Christmas morning but you could see what a tremendous struggle it was for him. His body just wouldn't cooperate with his will. The swelling became quite serious at that time and required treatment.
Many wonderful people are helping Nick and his family in many ways. Your help, offers of help, and prayers are greatly appreciated and meaningful to us. Deep felt thanks to all of you.
The City of Hope has a really beautiful 160 acre campus. The people here are all so nice and it is so apparent that they are here for the patient. It is a heaven of a place to go through hell. Some observations about the City of Hope:
There are a lot of bald people walking around here hooked up to tubes and bags and pumps. The City of Hope treats only cancer patients. Everybody is in the same boat.
Wheel chairs here are like shopping carts... or the yellow bikes of Amsterdam... (I may have the color and the country wrong but i know they were bikes for sure)... They are all over the place. Rolling into your car... kidding... You pick one up where you need it and you leave it at your destination. At the end of the day, some guy runs around the campus and picks up about 20 of them and puts them by the main entry... and they scatter and converge again tomorrow.
Little electric golf carts are also in abundance here. When we were in the village, Nick kept his eye out for one with keys, left unattended, so he could take it for a joy ride. He hopes to snag one from security... I hope they have a good sense of humor!
Things are starting to get a little tougher for Nick now. His mouth sores keep getting worse...his throat burns from acid... they gave him some morphine tonight along with other stuff for other things... very clinically descriptive there... huh? All of this is very normal so far... I'm just going to keep hoping for a normal hell for Nick. Let's get this thing done and get out of here bud... So far, things seem to be going good.
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Things continue to get tougher for Nick. They will be moving him into an isolation room tomorrow. His blood counts are rapidly decreasing, as they are supposed to. We began wearing masks today because he is entering the phase in which he will be very susceptible to germs. His mouth sores and sore throat are his biggest complaints. He has stopped eating or drinking and they will start him on "IV food" (can't think of the medical term right now) tomorrow. His comfort is being very well managed with drugs... not too little, not too much.
They are medically doing all kinds of things to him. Right now he has 4 IV pumps and 5 bags hanging on his pole. They are constantly changing bags and putting something else in. Watching from here, it likes like a very worked out regimen ... complex, well studied and orchestrated. Nick has contributed greatly to advising the doc and nurses as to what works well with him and what doesn't... what drugs not to give too close together and that sort of thing. God, he has been through a lot of this in his life.
Karen is with Nick tonight. She says he is comfortable and in good spirits. I will be back with him tomorrow and we both will be with him on Thursday, day zero.
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They moved Nick into an isolation room today. They hooked him up to a machine for 2 to 3 hours and removed all his plasma and anti-bodies and replaced it with albumin which I understand to be a generic, manufactured plasma. When they put in the donor's marrow tomorrow, the inert plasma becomes the volume in which the donor's stem cells will start creating new blood and bone marrow in Nick. Nick tolerated the procedure very well. He is comfortable and looking forward to tomorrow.
The doc said the donor's marrow will arrive at City of Hope around 2:30pm and they will hang it on Nick around 5:30 or 6:00.
If you are interested in donating platelets directly for Nick's use:Have you ever wondered how much blood you have in you? Well, Nick has 5.6 liters and you have either more or less than that.
Nick asked the doc about vaccinations and immunities... do his disappear? ... does he get the donor's? His will be gone and he doesn't get the donor's. The 2nd year after the transplant, they will revaccinate him with whatever he needs. These will be done every couple of months over a period of about a year.
Apparently, the donor stem cells Nick recieve have no "immunity memory" but will create the other cells that remember immunities. However, these newly created other cells have no ability to remember the donor's immunities because they are like virgin, baby cells.
This is how I understood the docs explanation... i think I kinda get it.
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Tonight's entry comes from Karen:
Subj: Stay You
Date: 10/20/99 5:23:54 PM Pacific Daylight Time
When you were born there was a new song on the radio by John Lennon. It was "Beautiful Boy" and it was written by John for Sean because he was so in love with his new baby, like I was with mine (and still am). That became my theme song for your birth, and when I hear it I am reminded of how happy I was to have you. This to me is a time of a new birth for you...you get a new life..the poopy thing is, you have to go through the labor yourself and it is much worse than any a mother ever had to go through.
Well. today I heard the theme song for this rebirth of my boy. It is called "Stay You". It is about being your own good self, and being loved for that, even if other people might not always approve of the way you do it. It is also about getting through tough things to arrive at the person you are. I will try to get it and play it for you.
Think good thoughts about that sweet guy who is in a hospital somewhere tonight doing something wonderful for you, a stranger. I hope it doesn't hurt too much, and he is not scared. My love is with him, wherever he is. He is giving us a great gift. I will see you tomorrow,
Subj: Stay you too
Date: 10/20/99 11:12:29 PM Pacific Daylight Time
I went down to the Apherisis Unit at about 3:00pm this afternoon. Nick's marrow had arrived and they were "spinning" it... got to get all the bone out! It was very moving to see 3 people from my work hooked up and giving platelets. Thanks again to all of you. Your donation is very meaningful. The machine they used to get your platelets is the same they used on Nick to replace his plasma.... Recognize it?This is the song...
I love the way you speak
and I love the way you swear
I love the way you walk in with your head held in the air
I love the way your words move
I love the way you drive
I love the way you scare people
scared to be alive
It's the toughest thing to do
I love the way you dress up on Saturday night
I love the way you never speak until it feels just right
I love the way you're spendin' all your money on yourself
I love the way you answer the phone
and pretend you're someone else
It's the toughest thing to do
Now, I don't want to talk about the thing you overcame
by dragin' out the past I put you through it all again
I've got the greatest admiration for the way you got through it
Couldn't ask nobody else to do it
better than you do it
It's the toughest thing to do
The donor's marrow bag is supposed to be hung
between 5 and 6 pm... I'll get a picture of it.
Nick has been very comfortable today. Everything seems to be going well. Today is a birthday. Let's pray this mad science works. I look forward to meeting Nick's donor one year from today. This guy needs to know the enormity of the gift he has given...of what he has done for us. He has given us hope where there was none.
It's 7:30pm and they haven't brought in the marrow yet. I am beginning to wonder if they forgot or something. We haven't heard a word. Maybe the guy at the Apherisis center, (where they processed it when it came in at 2:00pm today) left it on a counter, got distracted, had to rush out to the Springsteen concert and just forgot. Maybe he'll come in late to work tomorrow and see it on the counter and go "whooops!" Naw, that probably didn't happen.
At 8:08pm the nurse hung the bag... 108 ml.of human bone marrow... By 8:48 the bag was empty and tomorrow is day 1. Nick knew what was going on, but basically slept through the whole thing. I watched in silence and took pictures. It was very quiet... and felt very much like a religious experience.
October 21, 1999 the marrow bag infusion out of body marrow and Nick
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Nick spent a quiet and peaceful day. Karen took over mid day. They are gradually increasing his morphine drip to keep him comfortable. So far so good.
Nick and pumps Nick's home for awhile Nick and Karen
Karen is with Nick again today. She says he has a slight fever and got another case of the shakes, which they quieted with demeral... sp?. The drainage from his mouth sores has given him a cough. In addition to his mouth care regimen, they gave him a vacuum tube, like at the dentist office, that he can use to suck out the drainage. It hurts him to talk so he says very little. He hasn't had anything to eat or drink, for a number of days and we understand he is not expected to eat or drink for some time to come. We know of one patient who is at "day 30" that still has had nothing to eat. She has to start eating before they will let her go to the village. Nick says that when that time comes for him, he's gonna eat.
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I took over for Karen at mid day. Nick is hanging in there but it continues to get tougher. Nurse warned us that Nick's mouth will be even worse tomorrow because they will be giving him methotrexate tonight. Methotrexate causes mouth sores. Something new I learned is that methotrexate, which was used as a part of Nick's chemotherapy regimen at CHOC, is also given after the transplant because it acts as an anti-rejection agent. Figure that out?'
Nick's home for the next few weeks is an isolation room. His room is enterd thru an ante room where we scrub, mask, hat and gown before entering his room. It takes a few minutes to go thru this routine. I got into the habit of showing my face and waving "hey bud" thru the window in his door, every time I leave the ante room and every time I return. It shortens the time I am away from him by a couple of minutes on each end and shows him what I look like without the mask, hat and gown. I think it is also one of those "little ceremonys" that Nick uses ... or maybe it's me... to make these long hospital stays a little more bearable.
Grandpa Don and Grandma Bettie came to visit tonight. They were impressed with his infusion system. He currently has 6 pumps and 9 different bags hanging. Nurse says he will have more than that as we get further down the road. Another nurse says she has seen 9 pumps. Boy... if Nick gets to 9 pumps... we're going to take it out on the floor (we can't do that) and strut that bad boy IV pole (just kidding).
A bone marrow transplant is a long term, complex infusion process.
Grandma and Grandpa visit Pumps Tubes
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Nurse is very good about advising us that things are normal and that they will be getting worse. In the early afternoon, Nick threw up blood and a crystal clear, very thick mucousy substance like nothing I have ever seen come out of the human body. This scared me a lot. Apparently the sores in his mouth extend down his throat and into his stomach and the leasions are bleeding and generating large amounts of this clear stuff. The amount of blood he threw up was normal. He has a 38.5 C fever (about 101.5 F) which is a threshold number that adds a bag or two to the IV pole. Again, normal. They keep increasing the morphine drip to keep him, reasonably comfortable. He is not totally coherent .... although he definately has his moments of surprising clarity. He has an odd little rash on his legs, face and shoulders... could be a number of different things... put the lotion on it... tell the doc about it... keep an eye on it.
The processes going on in his body right now, must be intense... it seems every organ in his body must be affected... this is really a total body thing... I want to type here that things are getting "very tough", but that doesn't leave me much room for describing tomorrow ... and the day after that... and the next day... Nick has a long road ahead of him yet, and I am very afraid of how tough this might get.
His hair is coming out in large amounts today. The shedding is a minor annoyance... little hairs in his eyes and mouth... he has been through this several times before in his life... as I recall, once the hair starts to go, it goes fast, and the shedding only lasts a couple of days. He figures most of it will come out in the shower tomorrow.
Pictures have been added to previous days above.... in case you missed
Click here to go to updates beginning October 26, 1999
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