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October 26, 1999, Tuesday - day five

Nick spent all last night and this morning coughing up "saliva ropes".  This is a thick, clear slime substance that has such unreal adhesion properties it comes out of him like a continuous rope... A lot of this stuff has been coming out of him.  It hurts his mouth and throat... which are thick with sores.  He has a suction tube that he uses to vacuum this stuff out him once it starts coming... The blood has stopped...  only small clumps are coming up.    He was uncomfortable last night and this morning.  They upped his morphine again and gave him a "bolus" pump which allows him to administer an extra shot of morphine to himself every half hour.  It is comforting to know this is all pretty normal!?

Karen replaced me at mid day.  She says Nick is pretty morphined out, which I hope means he is comfortable at last.  He was given one or two units of platelets the other day.  Do they belong to you?  Platelets control bleeding.  Your platelets will hopefully help control internal bleeding in Nick over the next couple of weeks... so he is not throwing up blood and scaring me.  :)   The doc says Nick should start requiring substantial platelet infusions soon... Thanks again to all of you that have given platelets, tried to give :), and will be giving soon.  You are an important part of this mad science.


*    If he can swim enough… they will find a cure    *

When Nick was about 5 years old, and undergoing chemotherapy, he swam in a Leukemia Society of America, Swim-a -thon.  He solicited family and friends to sponsor him.  We figured he would swim 1 or 2 laps in the regulation size pool... he was pretty weak from the chemo.  We all sponsored him thinking 1 or 2, maybe 3 or 4 laps… but he won't go anymore than that. 

We arrived at the pool at 8:00 am on a warm Saturday morning and Nick wasted no time in jumping in the pool.  Remember here… Nick is 5 years old… and swimming is dog paddling… and not real efficient dog paddling at that.  So, he enthusiastically, and with great determination, begins his dog paddling quest, 25 meters down to the other end of the pool..    paddle...paddle...pause...paddle...pause...paddle...

At the far side, he hugs the edge of the pool, wipes the water from his eyes , and taking a deep gulp of air,  turns to glow at the adults at the other end of the pool with the tears in their eyes that he was too far away to see.

A brief moment to rest and savior the conquest, and the return trip begins… ,,, … ,,,
"Mark Nicholas down for 2 laps! …  way to be, bud!…  good job!"
Mom leans down and gives him a hug....  and a towel.  A quick wipe of the face… the towel is thrown to the deck… he's off to conquer lap 3.

Four…,,,…,,, Five…,,,…,,, Six…,,,…,,,
Ok…. So we were wrong… he must be feeling pretty good today.

Seven…,,,…,,, Eight…,,,…,,,Nineteen…,,,…,,,Twenty!
"All right Nick! You made 20!  Great job! Let's dry off now."

What time is it dad?  How about just a few more?
Thirty….,,,…,,,…,,,…,,,…,,,… Forty…,,,…,,,…,,,…,,,… Fifty !!!!!

I want to keep going !
Pleading… begging… the parents were…

10:00 am >>>>>>>>>>>>>> 11:00 am >>>>>>>>>>>
no longer dog paddling… pulling his exhausted body down the length of the lane rope… up and back… up and back… up and back… he has such a powerful mind

enthusiastic..., determined..., challenging the depths of fragile endurance.

12:00 noon…
finally... thankfully... the parents were...
"The event is over. You have to come out now Nick."

Ok dad!

Nick swam 150 laps that Saturday morning... in the summer of his 5th year.  To this day, I firmly believe…  that Nick's 5 year old mind firmly believed… that if he could just keep swimming, he could personally, make it so that no other child would ever have to go through what he was going through… they would find a cure for Leukemia. 

If he could swim enough…  they would find a cure … 

I'm not betting against him



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October 27, 1999, Wednesday - day six

I replaced Karen mid day.  Nick is heavily sedated.  He can't talk so they have brought in a small marker board for him to write on.  I'm not sure his writing would be anymore comprehensible than the mumbling, gurgling sounds he makes when he tries to talk.  He spent the day in fitful sleep.  Every 10 minutes or so he will reach feebly for the suction pipe and suck the bloody mucous from his throat.   His movements are slow and shaky.  He has difficulty finding his mouth with the suction pipe.  Most of the time, with a concerted effort, he can put the suction device back in it's holder when he is done.  He beeps the nurse when he thinks it's time for nausea medication, gives himself  a bolus of morphine when he thinks of it...

He had a bloody nose this afternoon.  This is also very normal.  They continue to give him your platelets to promote blood clotting so the bleeding doesn't get out of hand.  They are supposed to give him another round of methotrexate tonight.  Tomorrow will be another rough day.   I understand this will be the last of the methotrexate.  I don't know what comes next.

The cycle tonight goes like this: (this is a bit graphic, you may want to skip it)
20 minutes of quiet sleep
He begins to make gurgling sounds
Gurgling increases for about 10 minutes
He sits up and ropey, bloody mucous slowly flows from his mouth to the spit bowl
He finishes with the suction tube to get out as much as he can
He wipes his mouth with a tissue and lays back in his bed
20 minutes of quiet sleep...

Nick's Room -  Doc and Nurse enjoy looking at all the new stuff.  Do you see your card or gift here?

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October 28, 1999, Thursday - day seven

Today I can say things are "very tough" for Nick, and not be concerned of running out of superlatives for tomorrow.and the next day.  There is not much room left for things to get tougher.  Doc came in this morning and said his mouth sores are indeed severe.  He will reduce the methotrexate scheduled for day 11.  They are no longer telling us things will get worse, but rather it will be several days yet before things start to turn around.  They increased Nick's morphine drip again.  He is heavily sedated all the time.

Nick spent all last night and today, continuing to spit up bloody mucous... . literally liters of the stuff.  The process is nearly continuous with little time in between  for Nick to sleep...  literally a few minutes....  His nose bleeds regularly.  After his shower this morning the bathroom looked like the shower scene in "Psycho".  Early this morning, night nurse asked me if he had an "unrelated donor".  When I said he did, she said "Yes, they suffer the most".  I didn't ask her why.

He can't talk, and I was right in my guess that I can't read his writing either.  He went to great lengths... saying the words and writing them down on the pad, many of them several times...just to tell me, "I was going to ask you to set up the computer, but I changed my mind".  It was an interesting challenge for Nick, and I think he felt a great sense of accomplishment when he was able to make me understand this.

Time seems to pass neither quickly or slowly in Nick's room.  Time here is not measured in celestial movements but rather biological processes.  A few stem cells, in a strange and foreign environment, are are struggling to establish themselves, a cell division at a time... to create T cells, and bone marrow and. ... however this mad science works... a new and viable blood and marrow system consisting of billions of healthy cells and capable of continually supporting the life structure of an 18 year old boy.  Time belongs to the stem cells.
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October 29, 1999, Friday - day eight

Karen replaced me this morning.  He is not getting any worse.  If anything, he may be a little more comfortable.  He continues to cough up the bloody mucous but the quantity is diminishing.  He did not need any platlets today.  Doc says it will be several days yet before they would expect him to turn the corner.  By day 16 to 20, they should be able to see evidence in the blood that the bone marrow is grafting and beginning to create blood cells.  I am hoping day 6 and day 7 will have been the worse.  I took Grandma Mary, Natalie,  Kirsten and friend Rusty to visit Nick this evening.  We went in 2 at a time and kept the visit brief at about 20 minutes.  Nick slept through most of it.

        Grandma Mary and Natalie                    Kirsten and Rusty                    Peekin' in Nick's room

          Nick's view from the inside

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October 30, 1999, Saturday - day nine

Karen says Nick is pretty out of it.  Things are pretty much the same.  I am relieved he is not getting worse.  Karen says when Doc came in this evening, he said it was good that Nick hadn't developed a fever and that his bowels and bladder were functioning.  Don't we know it... been there... done that ... no fun.   Upon hearing Doc's encouraging comments, Nick, who had appeared to Karen and Doc to be in a deep morphine sleep, sat bolt upright in bed and "knocked" his fist 3 times on his "wooden" (it is metal and laminate) bed table.  What a clever and funny way of communicating his feelings... remember he can't talk and writing is tough.  Nick's undying spirit and sense of humor have always made it easier for me during his tough times... just one of the reasons he is my hero.

As I have mentioned before, Nick is and always has been, even as a toddler, very informed about, and involved in, his treatment and disease. It doesn't surprise me a bit that even in his deep stupor, he was able to summon enough concentration to listen to, and comprehend what Doc was saying and let his feelings be known in a clever, humorous and succinct way.

He got platelets today.  Karen said the bleeding had increased last night and this morning since he hadn't had platelets on Friday.

Be sure and go back and see the new pictures that have been added on the 24th and 27th.

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October 31, 1999, Sunday - day ten

Today is Halloween.  My father passed away 14 years ago today... Harry Houdini also died on Halloween..

Nick continues to hang in there.  This is Karen' 3rd straight day with Nick.  I miss not being with Nick, but I am very grateful to Karen for giving me this extended break.  It is not easy spending time in isolation.  Nick requires continuous 24 hour attention.  The isolation mask causes blisters on the top of the ears.  It is hard to sleep in the convertable chair...  in hat, mask and gown... it is hard to breath.... hands get dry and sore from the constant washing.  Sleep is hard to come by.  I know I am exhausted after a 48 hour shift.  Karen's strength is incredible.  Thank you Karen.  ...

Nick Punkin'

OK... I know this is really weird... but, every year i like to carve a punkin' and do sumthin' different and creative with it.  Welllll..... this year... i have been spending a lot of time thinking about Nick and i thought i would do a Nick Punkin'.  I know this is really weird...   and I am surprised I am even sharing this with you..  but I thought the idea and the technique was kinda neat. 

Pretty spooky too... huh?

Hey!  Send me a photo and a punkin' and I will do you next year!  :)


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November 1, 1999, Monday - day eleven

I took over for Karen this morning.  The good news is Nick seems to be doing a little better today.  The bad news is he gets his final half dose of methotrexate tonight... that's the nasty stuff.  Tomorrow is expected to be pretty rough.  His mouth sores are like nothing you ever want to see.  I hope they don't get worse tomorrow.  Doc says Nick should start showing continuing improvement in a few more days.  We are looking forward to day sixteen when they check to see if they can find any newly created blood cells.  Keep your fingers crossed.

 *****   Nick TV   *****
(not your father's Nickelodeon)

Making his television debut at age 3, Nicholas steals the stage from Marty Engals at the 1985 Luekemia telethon.  Nick has raised and donated over $30,000 to the Luekemia Society of America to aid in the battle against Luekemia.

Be sure and see the new pictures added on the 29th and 31st

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November 2, 1999,Tuesday - day twelve

Nick had a difficult night last night and this morning.  He was coughing up large quantities of blood and mucous (bloody saliva ropes) all night and morning and he "spiked a fever"  which means his fever exceeded a threshold, so they start diagnostic and preventative stuff.  We thought this might gain him a reprieve from the methotrexate, but they gave it to him anyway.  Doc came in this morning and said the worst should be over now.  Nick should start feeling better each day now.  Assuming the marrow is grafting, it will start producing blood cells which will be attracted to the areas of greatest trauma in Nick...his throat and mouth... and start the healing process.  We are telling Nick he is going to start feeling better now.  It brings tears to his eyes and we believe it is true.

For the last week or so I have been afraid to get a good look in Nick's mouth.  When Doc examines it with a flashlight I look just enough to be horrified and then quickly avert my eyes... actually I avert my entire head and body as I turn away quickly and cringe.  Anyway, Doc describes this sheath of dead tissue coating Nick's tongue and mouth that will be breaking up and coming off in the next few days.  I imagine he warned us so we won't be alarmed when this awful stuff comes out of him and into the spit bowl.

Nick is going to start get better each day now.

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November 3, 1999, Wednesday - day thirteen

Karen says last night and this morning was about the same.  He is on 2 additional antibiotics because of the fever he spiked.  This afternoon and evening I think he is getting a little better.  He is getting lots of your platelets.  Platelets last about 2 days in the body.  The response from people for donating platelets has been incredible.  I'll bet the City of Hope is platelet rich right now!  Thank you all so much!  I am optimistic that Nick is going to continue to improve significantly over the next several days.

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November 4, 1999, Thursday - day fourteen

Nick is getting better.  Our next goal is to get out of isolation ... and into a room with a window ... with a view ... and no ante room... and go for walks around the floor...  and kick healing into high gear.  His mouth and throat sores continue to be ugly and severe and very painful.  He is throwing up less... less blood... and he is sleeping more.  Doc says Nick is doing a great job.

I have totally ignored one malady Nick is experiencing that I really need to mention, just for the record.  Nick has dark brown radiation burns on his throat, chest, arm pits, groin area and in an area on his chest where his tubes enter that was covered with an artificial skin.  With the exception of the arm pits and chest, these are areas where Nick was given additional radiation in excess of the total body radiation.  This is to get malignant cells in areas they are known to hide.  The burns are somewhat painful and Nick treats them regularly with ointment.  I guess compared to the other pain he is experiencing, they are really no big deal.  Just a very bad sunburn.

OK.. you knew it was coming... yep... you got it... vacation photos!
(But this was a very special vacation.)

Make A Wish

Nick missed half of his sophomore and all of his junior year of high school while he underwent extensive hospitalization and chemotherapy.  The summer after his junior year he was contacted by the Make A Wish Foundation.  Nick was 17 and could have any wish he wanted.  He chose to take his family on a cruise of the Hawaiian Islands.  What a nice guy.  We had a great time!

        Nick gets his wish                                                The Limo to LAX

       Parasailing off Hilo                                                 The road to Hana

      Nick sits in his lawn chair on the moon.            Showing the girls how to swing.
      Note the black daytime sky and debris
      from previous Apollo flight in background.


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November 5, 1999, Friday - day fifteen

Nick is getting better.  Nick is not yet convinced because he continues to experience severe mouth pain... but he is definately getting better.
He can talk a little bit... he is more alert... he is sleeping longer and better...  he is coughing up less and less mucous...

When he came out of the shower this afternoon, he told nurse and me that he spit out a "piece of his tongue" in the shower... and it really hurt.  Later he left another "piece of his tongue" in the spitbowl.  This is a definite sign that his tongue is healing and shedding the dead tissue.  This indicates to me that healthy white cells (not those no good, space taking, blood sucking luekemic cells) are being manufactured in Nick and healing the traumatized area.  Doc says at day 30 they take some bone marrow from Nick and send it to 5 different labs for testing.  One of the tests will determine whose marrow is prevalent in Nick... the donors, or Nick's old marrow that some how survived the onslaught of chemo and radiation enough to regenerate.

Nick was loosing track of night and day, so Karen made these to help            Kathleen's picture for Nick

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November 6, 1999, Saturday - day sixteen

Nick continues to improve in small bits.  He asked for a sip of water today but couldn't swallow it.  It was great that he wanted to try.  They do not yet see any white blood cells, but we know they are there.  Otherwise I don't think he would be getting better... healing.

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November 7, 1999, Sunday  - day seventeen

Karen is with Nick yesterday and today.  Continued small improvements.  Still no white blood cells.  No cause for concern yet.
I am looking forward to seeing Nick tomorrow morning when I replace Karen.

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November 8, 1999, Monday  - day eighteen

Nick is continuing to make progress... slow but sure.  Still no white blood cells showing up.  If they don't start to see some by Thursday, day twenty-one, they will give him something to stimulate the grafting process.  Nurse says it is not unusual for it to take longer, to see new white blood cells, with an unrelated donor.

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November 9, 1999, Tuesday  - day nineteen

Progress is slow, but progress it is.  Still no white blood cells showing up.  Nick is throwing up less and less.  He is able to get more and more good sleep.  He appears to sleep continuously, although he claims he sleeps very little.  He can talk much better and is alert enough to press his own "nurse call" button and order his own medication.  Karen and I had been doing that for him for quite sometime.  They have begun to reduce his morphine over a period of time.  This morning he threw up bloody tissue and dead body parts... shedding the debris from the healing process... quite disgusting, but understandable.   Most of the dead tissue is gone from his tongue and a new pink tongue continues to heal.
We look forward to measurable white blood cells... and getting out of isolation.

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November 10, 1999, Wednesday  - day twenty

Ssssslllloooowwwwllllyyyy getting better.  Still no measueable white cells.  Everyone says that anyday now the white cells will show and recovery will accelerate.  Scott and Andrew came to see Nick tonight.  It was the most alert I have seen him for some time.  They are decreasing the morphine drip and he is tolerating that well.  When the psychologist visited tonight she asked Nick if the experience so far, was better or worse than his expectations.  He said he had expected a very hellish experience and it had met his expectations.  He and I both agree that so far,  the episode he experienced 2 years ago, (when he underwent lower intestinal surgery, which was the result of extremely heavy chemotherapy), and spent 48 tough days in the hospital, was worse than this... so far... knock on wood..

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November 11, 1999, Thursday  - day twenty-one

White blood cells found!  White count is over 300.  I think this is like the minimum measurable... the initial milestone.  Nick continues to be more comfortable.  I am glad the white cells showed up this morning.  This is the day they had planned to stimulate cell production with something called GSF, if white cells didn't show.  There are possible side effects and other repercussions if you go that route, so we are glad we don't have to.  Doc says things go better if you don't have to use it.  Doc says the white count will continue to climb now but it won't be steady or consistent.  Somedays will be increases... other days will show decreases.  If progress continues on pace, by Monday, Nick may be able to leave his isolation room "open that door" as doc put it, pointing to the door with the chain across it, for the first time in 28 days.  Very cool.

Although they have maintained Nick's weight pretty well, (74 kg... down from 77 kg i think),  you can imagine his legs are pretty skinny and shakey,  having not walked for almost a month.  His strength will come back quickly when he gets the chance.  Graft Vs. Host Disease ... is the next thing to watch out for.  I don't know what percentage get it... and I think I would rather not know.  I understand it to be quite serious.

Nick sat up in a chair for an hour today and played gin rummy with the recreational therapist.  She won... but Nick says she cheats... he says that it is okay though... he doesn't mind.  If she gets her kicks out of beating ...drugged out morphined hazed cancer patients who can hardly see the cards much less comprehend their meaning... at gin rummy... it is ok by Nick.  He enjoys her company.    :)
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