Page Four - Home Coming



December 3, 1999, Friday  - day forty-three
Nick is Home!!!




Remember the recreational therapist I told you about
that cheats kids at Rummy?  (See day 21)
Well.... here she is cheating Nick at Rummy!  We have
the evidence Toni !



December 4, 1999, Saturday  - day forty-four


December 5, 1999, Sunday  - day forty-five

Nick had a really good weekend at home.

Time is a very funny thing.  During the 8 weeks Nick spent at Hope, time seemed to pass neither quickly or slowly.  The time flashed by in an instant and seemed an eternity, I am not sure which.  It was an instant and an eternity at the same time.  This weekend on the other hand, seemed to last a very long time.  The progress Nick seemed to make this weekend was astounding.  Far too much progress for only 2 days.  Seemed like 2 weeks of progress.  But it is really hard to tell.  Time is a very funny thing.



December 6, 1999, Monday  - day forty-six

Nick went to the outpatine clinic today.  His blood counts were all very good.  He still doesn't need platelets.  Overall he is doing very well.  However, the graft versus host disease is getting worse, so Doc put him on medication to fight it.  The symptoms include a rash in Nick's mouth, on his hands, belly and legs and diarrhea.  Doc didn't seem concerned but I must admit I am a little worried.  All we can do is wait and see and pray and hope that they can gain control of the GVHD.



December 7, 1999, Tuesday  - day forty-seven

Nick had a much better day today.  The diarrhea had stopped and the GVHD seemed to be responding to the medication.  He talked to friends on the phone and was in very good spirits.  He has been through  so much, I bet it feels really really good to feel even a little bit better.



December 8, 1999, Wednesday  - day forty-eight

When I saw Nick tonight I got the impression... and this is just my impression, that he was starting to feel well enough to realize he wasn't feeling very well... and that he wished he would feel better... or feel better faster.  He seemed a little discouraged.



December 9, 1999, Thursday  - day forty-nine

Nick told me he had a difficult night last night.  He was throwing up, had the chills and was shaking uncontrollably.  When he went to see Doc today, he was relieved to discover that he was suffering from methadone withdrawal which they had been giving him to help him through the morphine withdrawal.  Doc put him back on methadone and will taper him off more gradually.  Nick was relieved that it was this, and not something else... or worse.  He still has GVHD but Doc says that the amount Nick apparently has is a good thing.  I don't understand it, but apparently the GVHD is destroying Luekemia cells if any are present... or something like that.  I have to find out more about this.



December 10, 1999, Friday  - day fifty

Half way to the next milestone of 100 days (January 29, 2000).



December 13, 1999, Monday  - day fifty-three

Nick went to Hope to see Doc today.  Everything is going well.  No changes to any medications or TPN at this time.  The GVHD is still an issue but Doc wants to allow a little more time for the 2 current courses of treatment to work.  If these don't work there are still other things that can be tried that don't sound too bad... medically elaborate, but physically not too invasive.  Doc continues to be very reassuring.  Nick is still tapering off the methadone... no big deal.  He is still on 13 and a half hours a day of IV feeding (TPN).



December 14, 1999, Tuesday - day fifty-four

What I noticed most about Nick when I saw him tonight, is that he now seems to be making noticable progress in getting some strength back.   His appears much less feable... and shaky....His movements are quicker and more assertively directed.  He is able to sit and stand more quickly and walk at an almost normal pace.  He is awake from noon to midnight and sleeps from midnight to noon.  He is listening to his music, which was an irritation to him up until even a few days ago.  I am seeing very good progress now.  Keep those good thoughts and prayers coming!



More Photos

Nick leaves the Village


                      Nick Ready                                Nick Set                          Nick Go!



 
 



Nick Arrives Home


    Nick arrives home                          Looking Good!                                   Yep!



 

Man's Best Friend


  Rigby Greets Nick                  Makes herself right at home...      ... like old times



December 17, 1999, Friday  - day fifty-seven

Nick went to see Doc at Hope yesterday.  Everything continues to go well.  Doc backed off Nick's TPN from 13.5 hours per day to 10 hours per day.  Nick is slowly beginning to gain some weight back.  Doc also reduced his prednisone medication by 50%.  Next week, Nick is supposed to go in for a 4 hour hemaglobin transfusion.  Apparently, this is something they will typically do around day 60... nothing unusual.

Doc is not satisfied with how the GVHD is responding to treatment.  He is thinking about doing a proceedure where they give Nick a special photo sensitive injection that attaches itself to T-cells.  They then hook Nick up to a machine like they use for harvesting platelets.  As the blood goes through the machine they shine a special light on it that reacts with the T-cells and their photo sensitive passengers.  Somehow this can help with the GVHD.  Pretty interesting.  Nick's biggest complaint continues to be mouth sores which aren't improving much and keeps him from eating as much as he would like.



December 20, 1999, Monday  - day sixty

Nick had a good weekend.  Every day is a cause for celebration... celebrating returning strength and recovery.  Nick is comfortable... except for the darn mouth pain which just won't go away.  His appetite is good... his strength is improving... and when he gets rid of the mouth sores he is going to be a tough guy to hold down.  His facial hair is starting to grow back, but his head hair is still wondering what hit it.  All in good time.



December 26, 1999, Sunday  - day sixty-six

Nick went to Hope twice this week and everything continues to go very well.  He has developed some joint pain that he is taking tylenol for.  The joint pain is caused by loss of bone density which is caused by one of the medications he is taking.  He also has tremors in his hands which is also a side effect.  He is always cold which Doc says could be a result of damage done to his thyroid gland.  You may recall that when he was getting radiation treatments prior to the transplant they gave an extra shot of radiation to his thyroid.  This caused the burns and discoloration to his neck which are still barely visible today.  This caused damage to the thyroid which could be temporary or permanent...  one of those wait and see things.  If it turns out to be permanent, the have medication to deal with it.

Nick continues to gain strength.  He was very active during this holiday season, saw lots of family and friends, and didn't wear out like I expected he might.  He is doing really well.  He still has mouth sores but seems to be talking and eating well so I think they don't bother him as much now.  Doc has taken all of the nutrients out of the TPN so he is only hooked up to IV for hydration.  He has started to drink lots of fluids.... fiinally... his goal is to get off the IV right away.  Today we are 2/3 of the way to day 100.  Nick is really looking forward to loosing the mask and the low bacteria diet... and going out with his friends.



January 3, 2000, Monday - day seventy-four

Nick continues to do well.  He is eating and drinking in sufficient quantities that he has been taken off all IV supplements.  Nick actually took himself off the hydration and then informed Doc at his subsequent visit that he had done so.  Doc checked his blood labs and agreed with Nick that he had done the right thing at the right time.  We shaved Nick's head again this weekend.  The hair had started to grow back but it was thin, whispy and spotty so we thought we would give it all another fresh start and see how it comes back this time. Nick continues to do very well and is looking forward to January 29th, day 100.



January 4, 2000, Tuesday - day seventy-five

Nick went to see Doc yesterday.  His platelets, which had been dropping for the last 2 weeks, were so low that they gave him a platelet transfusion.  They also did a bone marrow extraction to try to determine the cause of the loss of platelets.  We should hear the results today and the recommended course of treatment.  I sensed that Nick was a little scared... or maybe it was just me.



January 7, 2000, Friday - day seventy-eight

Nick went back to the Doc today.  The bone marrow test results didn't show any reason for the dropping platelets... everything was fine.  I was relieved.  His platelets continue to be quite marginal.  He didn't need anymore today, but his count had dropped since Monday.



January 9, 2000, Sunday - day eighty

Karen told me that Nick had a rough night last night... joint and bone pain.  He is also down to a very low dose of methadone and says he feels very tired and just plain crappy all the time.  Maybe when he is through the withdrawals he will feel better.  I am very optimistic that he will feel better soon... that he will get stonger... and feel like going out by day 100... I hope so.


January 12, 2000, Wednesday - day eighty-three

Today is Nick' birthday!  19th!  Fortunately, he is feeling pretty good today.   It would be great if you could drop him an Email Greeting... and I've made it easy for you... just click here ----> .  BIGNIK73@aol.com



January 17, 2000, Monday - day eighty-eight

Karen took Nick to the hospital this morning on an emergency basis.  He was so weak he literally could not move.  His labs showed that he needed red blood cells and platelets.  He has lost a lot of weight.  His arms amd legs are skeletal.  He seemed to be feeling a little better at home this evening after the transfusions.  They are considering putting him back on IV feeding.



January 23, 2000, Sunday - day ninety-four

On Friday, Nick was back at Hope.  His blood counts continue to be low and on this day his chemestry was all screwed up as well.  They transfused him with hemoglobin and also gave him an infusion of potassium and magnesium.  Doc thinks the medication he is taking, primarily the cyclosporin, is destroying blood cells and screwing up his blood chemestry.  They took him off of the cyclosporin and put him on a new drug called prograf which is supposed to promote grafting of the marrow and fight  graft versus host disease... the same things the cyclosporin was supposed to do.  Doc also reduced the prednisone dose because of the bone pain Nick suffers.  Prednisone causes loss of bone mass.  Next week they will watch carefully for a flair up of host versus graft because of the changes in medication.  They kind of expect it to happen.

They are prepared to start a new proceedure called "photopherisis" and Karen and Nick had the proceedure explained to them by the person who will do it should it be required .  For this proceedure, Nick will go to Hope 2 or 3 days a week for 3 weeks.  He will be hooked up to a machine that takes blood out of one arm, it exposes it to a special light, and returns it to the other arm.  This is supposed to be a real good treatment for graft versus host.  We will see how things go next week.  I hope that with all the changes they made this week, Nick will finally start feeling better and gaining weight next week.  Pray for a positive week with substantial progress.  We are getting too close to day 100 and the reduced restrictions for Nick to be as weak as he is.  Nick is planning a combined birthday party / super bowl party for next Sunday... day 101... he is planning on having all his friends over... and no masks!  ... and pizza!  Let's hope he is up to it and Doc says it is ok.



February 4, 2000, Friday - day one hundred six

Sorry for the long delay between updates...
Nick has been gradually improving the past 2 weeks.  He had his Super Bowl Party on Day 101... friends came over and the food was great.  Nick was tired.  He is gettting out of the house more now and hopefully this will help him get  back strength and weight.  He is off the dietary restrictions so he can now eat anything he wants and go out without a mask.  He has been requiring blood transfusions regularly...platelets, red blood cells, hemoglobin... I guess his new system still is not producing at acceptable levels... but that is pretty normal for this stage.  He still goes to the City of Hope twice a week.  They continue to gradually reduce his medications he is very glad of that... and there has been no flair up of graft vs host... so things are going pretty good right now.  My hope is that we will now see continuous progress at a little faster pace... and no setbacks...



February 9, 2000, Wedensday - day one hundred eleven

Nick has been doing ok.  They have been decreasing his medications and his body has not been able to keep up with blood production so he has been geeting blood product transfusions (platelets et. al.) every week.  He had one last Friday and will likely have more when he goes to Hope today.  He feels pretty good the day after a transfusion but seems to run down pretty quickly in just a few days.  They are doing a bone marrow extraction today (this is routine around day 100) to make sure all is right with the marrow.  It will be a few days before we hear the results.  Next week they are going to do an MRI, on at least his knees, to see why his bone pain is so bad, and I guess to see if they can see bone density loss caused by his medications.  I think he has been gaining a little weight lately... at least it looks like it to me.  It seems that every thing is going ok... it just takes a very long time.



February 27, 2000, Sunday - day one hundred twenty-nine

Doc comfirmed that Nick's progress has been slower than they expected. The results of his bone marrow test were very good.  Everything looked great in his marrow.  He continues to get transfusions regularly.  Earlier this week, Tuesday, he came down with a cold.  He continued to get worse as the week wore on, and on Saturday afternoon, yesterday, he spiked a fever of 103.8 which meant he had to be admitted to the hospital.  Today is Sunday and they are giving him IV antibiotics,  hydration and all kinds of pills to treat all kinds of potential maladies.  They also gave him both platelets and red blood cells because his counts were low.  He has been throwing up, not sure why that is.  If all goes well, I believe he will be here only 3 or 4 days, based on past experience with this sort of side track.  They haven't done the MRI on his knees yet.  His hands shake violently and uncontrolably all the time.  It is so bad he has great difficulty drinking from a cup.  This is a side effect of the GVH drug he takes.  I will try to update this more frequently... When i don't update it you can assume things are status quo.  Also, feel free to email me anytime, if you are really anxious to find out anything... i really dont mind.  Your continueing prayers and positive thinking support are needed and appreciated.   Also, i will try to get some new pictures in here soon.



March 4, 2000, Saturday - day one hundred thirty-five

Nick was released from the hospital on Wednesday.  Always great to get out.  They filled him full of powerful antibiotics and antifungals for 5 days and he responed well.  They also put him in a plastic tent where he breathed oxygen and some strong lung medication.  This is a treatment they can do once a month to keep his lungs in good shape.  They did the MRI on his knees and hips while he was in the hospital.  The results showed he has suffered bone loss in both his hips and knees.  They said they will do another MRI at the end of his treatment and then decide if they need to "replace any parts" is how Nick conveyed  it to me.  I take this to mean that they will see if they have to do any hip or knee replacement surgeries.  Just more potential side effects of a bone marrow transplant, I guess.  Who would of thought that a BMT could lead to artificial hips and knees?  Well, I guess it all goes with the territory and sure beats the alternative.  Anyway, we don't know that this will happen, and Nick will just cross that bridge when he gets to it... just like all the other bridges he has had to cross.  He sure is a special guy.



March 22, 2000, Wednesday - day one hundred fifty-three

Nick is doing really really well.  He hasn't needed any blood products for over 2 weeks.  He is gaining weight, going out with his friends and he has told me he thinks he is turning the corner.  Doc continues to gradually decrease all of his medications.  He has no major complaints other than weakness and fatigue.  His hands shake  uncontrollably all the time from the medication but that should end when the meds end.

You don't really realize how heavy your heart is until it starts to lighten.

I am feeling really great about Nick's recent progress.  Knock on wood... cross your fingers... say another prayer... keep thinking those good thoughts!  Thanks!



April 11, 2000, Tuesday - day one hundred seventy-three

Nick continues to do very, very well.  He is going out with his friends often and has no major complaints.  As of last week, he only has to go to the doctor every other week.  He has not had nay blood product transfusions for over a month and his counts remain good.  He is gaining weight and strength.  His medications continue to be gradually reduced.  I am very hopeful for the long term success of this thing he has been through.  Once again,... Knock on wood... cross your fingers... say another prayer... keep thinking those good thoughts!  Thanks!



May 8, 2000, Monday - day two hundred

Nick is doing fanatastic.  He will have his Hickman line (the tube that goes into his chest up into his neck and down into his heart) removed next week.  It is removed on an outpatient basis with only local anethesia.  He will be so glad to get that thing removed.  The daily cleanings and flushings are a nuisance. One step closer to a normal life.  He is doing so great.  He is going out with his friends and living a very normal life.  He is still on some low doses of medications.  He is gaining weight and his blood counts are always good.  His major complaint is that he fatigues easily.  He goes to see Doc every other week now.  Medications and Doc visits will continue to diminish over the next few months.


These pictures of Nick were taken today.
The little black thing on his left shoulder is the clip he uses to keep his tubes secured.



May 22, 2000, Monday - day two hundred-fourteen

Good news... not so good news.   The good news first.  Nick had the tubes removed from his chest today.  These are the tubes that entered through a hole in his chest, go up into his neck, into his aorta and down to the entry to his heart.  This was his mainline for blood products and various infusions.  They installed it late last summer prior to the bone marrow transplant.  It required daily cleaning and flushing and was a bit of a hassle.  He is really glad to have it before summer.  He can go swimming now and doesn't have to worry about it gettting pulled out in the mosh pit.

The not so good news is that graft vs. host disease has returned.  Doc had been reducing the medication that fights graft vs. host.  Unfortunately, GVH came back.  He once again has severe mouth sores.  His mouth looks like hambuger... red, raw and painful.  Doc increased his medication and this should hopefully get him back in good shape very soon.  It takes a long time for the body to adapt to the foreign bone marrow.  His blood counts and chemestry remain very good and he feels very good except for the mouth sores.



June 24, 2000, Saturday - day two hundred-fortyseven

This update begins back on Tuesday of this week.  Nick began to complain of pain at the top of his stomache that hurt when he breathed.  On Wednesday the pain continued to get worse.  He had a very bad night on Wednesday and on Thursday morning asked to be taken to the hospital.  He was in so much pain it took him a few hours to gather the strength to walk to the car for the ride to the hospital.  Doc examined him and had X-rays done and scheduled a a camera scope of the stomache for Friday.  Doc's preliminary diagnosis was either an ulcer caused by all the meds Nick takes or shingles, which can localize internally, often in the stomache area.  They immediately began treatment for both.  The Friday scoping showed a very red irritated area in the stomache and white spots on the way down.  They removed some of the material for biopsy.

The pain has been so severe that morphine was giving Nick no relief.  They have hooked him up to a continiuous flow of something considerably stronger than morpine and he is able to give himself boluses every 10 minutes.  The pain seems manageable now.  On Saturday (today) Doc came in and said he believes Nick has shingles based on the severity of the pain.  Doc says that once a person has chicken pox, the virus hides in us for the rest of our lives within our nervous system.  When it manifests itself as shingles, it is very painful because the leasions are internal, and right on the nerves, and often in the abdominal area.  Nick's pain has been so severe he has great difficulty in sitting up or walking.

After Doc left, Nick said "Dad, can't shingles be fatal to me?"  I told him that this was true when he was on chemo but I didn't think that was the case now.  His immune system is supressed, but not that supressed I figure.  As I thought more about this, I realized that over the last month, they have continued to increase his graft vs. host medication because of the severe mouth sores, a sign of graft vs host disease.  The treat this by increasing the medication which slows the bone marrow grafting process and lowers his immune system.    Just this week, his mouth is finally improving.  This may have made made him more susceptable to shingles.  It is a constant juggling act, huh.  Right now I don't know if Nick has a tough road ahead or if this is just a little side trip. Hopefully, the shingles (assuming that is what it is) will be under control in a few days.  It will probably take them a few days to wean him off of the pain medication also.  I am optimistic Nick will be feeling better in a few days.



June 26, 2000, Monday - day two hundred-forty-nine

Doc came in this morning and confirmed that Nick has shingles (adult chicken pox).  He has started to break out all over his body.  He is more comfortable, he is on a powerful pain IV, but the shingles are coming on stronger and stronger... hoping they don't get much worse.  They are on the oustside of his body too now and they itch a little.  They moved us to an isolation room where we now wear gown and gloves so we don't spread the virus when we leave the room.  Doc says Nick will be here for a week or two while the virus runs its course.  No one seems to be concerned that this thing is going to get out of control so I won't be either.

When Nick was a child and on chemotherapy, chicken pox was one of our greatest fears.  We were told to avoid exposing Nick at all cost because they could be fatal to him in his immune suppressed condition.  Karen became an incredible predictor of chicken pox at Nick's elementary school.  Knowing the precise incubation period of the virus, she charted and tracked outbreaks.  She amazed the teachers and principal by telling them that she was going to keep Nick out of school on Wednesday and Thursday because a bunch of kids were going to break out with chicken pox on those days.  She was always right and was able to keep Nick from chicken pox for the entire 6 years he was on chemo.  He finally did get chicken pox when he was off chemo and he handled it fine.  Now that he has had a BMT, none of his immunities and childhood vaccines are any good any more. He is susceptable to TB, measles, mumps, rubella, tetnus... all that stuff.  Sometime next year, when his immune system is firmly established,  they will start re-vaccinating him.



July 3, 2000, Monday - day two hundred-fifty-six

Nick started feeling better on Wednesday and on Thursday they had weaned him off the IV pain medication and onto pills so he could go home.  The external pox disappearred rapidly but Nick still has stomache pain and is very weak.  I am very relieved that he is definately getting better.  In another week I am sure the shingles will have cleared up and he will get back into the swing of things.



July 10, 2000, Monday - day two hundred sixty-three

Nick says the pain in his stomach is quite bearable now and he feels better each day.  He is going out with his friends and says the pain is definately getting less and less.  He seems to be doing well now.



August 15, 2000, Tuesday - day two hundred ninety-nine

Nick has been doing much better the past few weeks.  He continues to be on the graft vs host disease medication but is feeling pretty good.  He went on a 4 day trip to San Francisco with some friends and had a great time.  He is eating a little better but is still very thin.  Tomorrow will be day 300.  October 21 will be one year.  He plans to start college in a few weeks.   Hope all continues to go well.



October 5, 2000, Thursday - day three hundred fifty

I apologize for the long delay in updating this.  Nick has been doing good.  He still struggles with graft versus host disease but Doc manages it by adjusting various medications.  Nick is coming up on his first birthday on October 21, 2000.  He tells me he is going to celebrate by getting a tatoo.  A friend designed it for him and the design carries rich meaning for Nick.  I will try to get a copy scanned and put on to this website.  In a month or two we should be able to see the real thing.  Doc says he will put Nick on antibiotics so he can get the tatoo safely.  I intend to write a little more frequently now in the days leading up to Nick's 1st birthday.  I hope you are still reading!

I went with Nick to see the Doc on Tuesday.  Everything was fine but they adjusted his meds to treat severe itching he has all over his body from GVH.  When they weighed Nick he was only 142 pounds.  He is almost 6-3.  Needless to say, he is very thin.  The weight will come back with time.  All things... in time.  On Wednesday, Nick went to school in the morning, to a the hospital in the afternoon for lung treatments... they put him in a tent and he breathes chemicals which help keep his lungs healthy... had blood labs done, came home for a half hour nap and then went to work form 5:00pm until 11:00pm.  He will get up to go to school at 6:30 am for school the next day.   He keeps a very busy schedule.  I don't know how he does it, and I worry about him.  On the one hand I wish he would take it easy, and on the other hand, it is great he feels good enough to keep going.



Nick's Essay on Tolerance

Nick wrote the following essay on tolerance as an entry to a competition sponsored by a cancer survivors foundation.  It made me cry.  He hopes to win $5000 and a trip to the United Nations in New York on November 16th.  At the very least, it gives some insight into Nick,  in his own words.
 

An Essay on Tolerance
Nick Hopkins

There is not a better person to ask about tolerance than a cancer survivor.  No matter what type of cancer they had.  They have learned something about every kind of tolerance.  Whether its putting up with all forms of pain, the physical pain of countless needles and surgeries, or the emotional pain of finding out that once again your life is going to be turned upside down.  Anyone who has experienced any chemotherapy learns what its like to be different.  They get a first hand view of how other people tolerate a person being different.  Every patient finds that privacy is gone they must tolerate countless indecencies.  It feels as if your body no longer belongs to you.  Even the bathroom is share information.

 To fully understand a personís thoughts and what they feel you must first understand where they have been and what theyíve been through.  So weíll start with a little about me.  Iím nineteen years old. Iíve spent twelve years of my life in and around the hospital being treated for Leukemia.  Iíve experienced great leaps in treatment technology in my life time and Iím optimistic that some day my form of cancer will not be a problem.  I was originally diagnosed at age of two and a half. I relapsed at the age of three.  At eight years of age I was considered cured.  All treatment stopped and I lived my life normally through Jr. High.  I played High School football as an offensive lineman.  My body was in great physical condition and my ego was bigger than ever.  I had two great seasons and then just before spring training of my first varsity year my life was turned upside down.  I began to feel tired my body was getting weak and I was bruising.  I had felt it come back long before any symptoms, but I couldnít tell anyone until a doctor finally re-diagnosed me with leukemia.  I spent the last semester of my sophomore year in the hospital at one point I was at CHOC, Childrenís Hospital of Orange County, for forty eight days straight.  I thought that was a long time, little did I know of what else was in store for me.

  I kept myself focused on the goal of returning to school for my senior year and graduating on time with my friends, who have and continue to stand with me in all that I go through.  I spent time in Independent study  and made up three semesters of school while going to the hospital weekly for chemotherapy treatments.  I met my goal and returned on the first day of my senior year with all my buddies. Despite some of the things I put up with and tolerated that year, because of my illness I still believe it was the greatest year Iíll ever have in school.  Things were going great and I believed myself on the road to recovery.  My ego had returned I was at the top of the world.  I stood in the graduation ceremony next to all my friends who had stood by me through my ordeal.  Two days later disaster would strike me down again Leukemia cells were found in my blood even though I was under going chemotherapy.  I had relapsed again.

The final and only option would be a bone marrow transplant.  I lived that last summer as best I could.  In August a donor was found.  I entered the City of Hope Regional Cancer Center in October and spent until late December in intensive care Isolation.  It was a great relief to finally return home even though I had to remain quarantined in my house until February.  As soon  as I was able to go out into the world my friends helped me to force a quick recovery on myself.  Now I find myself feeling good, but still not quite normal.  Iíve started my first year of college and Iím looking forward to the mile stone that October twenty first represents.  That will be the three hundred and sixty fifth day of my bone marrow transplant and hopefully soon after will be able to meet my donor.  Iíve also set a new goal for myself.  I want to see other parts of the world, mostly Europe.

Being different is probably hardest in elementary school simply because little kids like to exploit differences.  Usually its all in fun and mostly innocent because they donít know any better.  High school is not the same way.  For me the consequences of being different during those years were greater than just shrugging  off name calling.  Being a chemo patient worked to my advantage as well as it did against me.

Probably the most frustrating thing for me was the lack of tolerance by the police department.  In less then a years time I was pulled over twelve times and only issued one ticket.  Finally on the last time that I was stopped I asked the officer why I was pulled over.  The officer told me that I wasnít supposed to have anything hanging from my rear view mirror.  I reached up and pulled down the air freshener hanging from the mirror.  Then I asked the officer why she really pulled me over.  She proceeded to walk to the front of my 1975 Cadillac convertible and point out that I had no front license plate.  I said ya thatís good, but you were behind me.  finally she told me that she pulled me over because I had a shaved head and drove a gangster car.  By now I was more than agitated and I explained that first off I got this gangster car from my grandma and this cool shaved head comes from chemotherapy.  After describing my last year and a half in the hospital she apologized and had me go on my way.  Funny thing is I havenít been pulled over since.  Maybe even stranger my career goal is to be in law enforcement.

Being a chemo patient was far from being all bad it defiantly had its advantages.  I got a little more attention from people, mostly girls, I had a lot of friends watching out for me.  Its good to realize now that the attention wasnít superficial.  The people who took care of me then are still close to me now.  I missed quit a bit of school, but my teachers were completely understanding and gave me plenty of breaks on school work.  Another advantage was that  by writing about my experiences I received a small scholarship to help out with junior college.

Another incident that occurred while in high school effected some of my friends as well.  A group of us went to a party in another city.  We knew the girl whoís house it was at, but none of the guests.  Our reception was less than friendly and nobody would talk to any of us.  Hardly anyone would even walk by us.  After awhile I asked the person having the party what the deal was.  She said most of the people thought we were racist skin heads.  Iím still not sure if this case of reverse racism was good or bad.  Sure we got discriminated against, but nobody was going to try and cause trouble with us either.

Well, the question now is how did a lifetime with cancer effect my personal view  of tolerance.  From my encounters with the police I have empathy for minorities and donít discount their feelings of being harassed.  Iíve learned to not judge people immediately.  After giving them a chance I will definitely form an opinion of their character.  It seems as  if going through what Iíve gone through would make me more tolerant.  Instead I donít tolerate anything.  Even though I look out for the weak and strive to help them better themselves, I canít stand it when people donít try.  I donít deal with people who bother me and I donít let anyone mess with the people who are close to me.  Iím very up front,  I tend to tell people exactly what I think of them whether they like it or not.  I canít stand anyone who complains about anything.  I do believe that everyone should be extremely self confident and I try to help those around me feel as confident in themselves as I do.  If everyone believes in themselves the entire group is stronger for it.

No one with cancer should ever consider themselves sick.  The possibility of death should be forgotten.  The way I made it through the many long days in the hospital was by  concentrating on two ideas one being "donít think" this simply means to clear your head of all bad thoughts. Concentrate on the absolute moment at hand. Let nothing bring you down. Just forget to think about the sadness.  The other idea is "Live for tomorrow" keep your mind on your goals.  Things may be bad right now, but your must fully believe that someday things will be better.  Some task maybe difficult at the moment, but in your mind you must know that its only a matter of time before you can do things again.  Nothing is impossible and if you believe that you can do anything then you can.

Something that everyone must tolerate at some point in their lives is the loss of someone that they care about.  Cancer patients and their families may experience this more than the average person.  There is no single way to deal with death.  Everyone must find their own way to cope.  This next section is included simply as a tribute to Travis Ruhe.  I wrote this at the end of my senior year almost one year after his death.  It was directed towards his family.  I hope to keep his memory alive because I believe no one should ever be forgotten.
 

On February 28 1997 began the hardest part of my life.  I felt weak and sick, I thought it was a cold.  I had just finished my second season of football.  I was in the best shape of my life.  In my mind I was invincible. Nothing could stop me, nothing could slow me down.  I loved the grass, I loved being outside,  I loved my friends.  Little did I know that I would be spending the next forty eight days strapped to an IV pole.

I see the day as gloomy, an overcast eternal night. Just on the verge of rain.  It could have been a sunny spring day, but no matter how it was Iíll always remember it as the day the sun never entered the sky.  I went to the doctor to get a blood test and maybe some antibiotics.  The nurse came in a second time to draw more blood.  After an hour the doctor finally entered.  I saw on his face the scariest look I have ever seen.  It will always be burned in my mind.  Its was a stone cold look of anger, fear, sadness and pity all on one manís face.

I was sent directly to the hospital after hours of testing it was time for the news.  The doctor guided me and my parents down the hall to another room.  I felt my mind leave me I went into a state of shock.  The walls slid by me I didnít move my feet.  It was like being on a moving sidewalk.  I found myself in a tiny room the ceiling seemed to be closing in on me.  Then the doctor told me, what I already knew deep in the back of my mind, I was being diagnosed for the second time with Leukemia.

 I knew it would be hard, but I was ready to go I had made through leukemia before and I could do it again.  The first week was hard, but I was still doing all right.  Then things took a turn for the worst.  The chemo therapy had torn holes in my intestines and I was rushed to emergency surgery.  I spent eight days in intensive care.  I try, but I canít remember any of that time and I think its probably better that way.

Over night I was destroyed.  One day I was playing football.  The next day I was nothing. I couldnít walk, I couldnít eat, I could hardly sit up.  After forty eight days I finally went home.

Never once did I think of death while I was in the hospital.  I was too sick I could think of nothing, except going home.  After being home for two days I realized what had happened to me.  I began to fear death.

This is when I talked to Travis Ruhe.  I knew that he was on the tail end of what I was going through.  He had already done it.  If anybody could understand what I had been through he could.  On my hardest night I talked to Travis on the phone.  We shared our experiences.  He gave me new ideas for treatment.  Travis reminded me that my friends were with me and that people I didnít know were thinking of me.  Travis also inspired me to return to school.  He had just completed his first two weeks back at Brea High School.  We talked about how good it felt to be back with people.  After that hour on the phone I decided there was nothing I wanted more then to be at school for my senior year.

I never got a chance to meet Travis in person.  I never got a chance to thank him for being there for me in my hardest moment.


Tolerance can take on so many meanings.  It effects all aspects of our lives.  Everyone has different views of the world.  Sometimes people donít agree with the way other people think.  By learning to tolerate the way  other people deal with everyday life we can improve our own feeling of comfort in the world.  We donít have to honor the ideas of everyone else.  We just have to give them a chance.



October 11, 2000, Wednesday - day three hundred fifty-six

If you are interested, you might want to look at what was going on a year ago today... how time flies... when you are having fun?
A year ago today



October 18, 2000, Wednesday - day three hundred sixty-three

Nick went to see Doc today.  He has been sick since the weekend.  We hope it is just the virus that is going around but it could be GVH in his lungs.  They are doing an x-ray on his lungs and giving him some transfusions to help him fight whatever it is he has.  He has lost 4 more pounds and looks like a concentration camp survivor.  He is really very thin and it worries me.  Hopefully the transfusions they give him today will help him get better.  This Saturday is Nick's first birthday.  Hope he feels better for that but it doesn't look real likely right now.
A year ago today



October 19, 2000, Thursday - day three hundred sixty-four

Nick told me that he is feeling more energetic after yesterday's infusions.  He said during the insfusion it felt as if he went through the life cycle of the virus... shivering, shaking... they gave him demeral and he slept.  He says he feels better and more energetic today.  The overall body itching is not as intense or severe.  He is feeling significantly better.
A year ago today



October 20, 2000, Friday - day three hundred sixty-five
A year ago today


October 21, 2000, Saturday - One Year!!!
A year ago today... day 0... a really good one...

Today is a very special day.  I don't yet know how Nick plans to celebrate it, but for me it is a day of quiet celebration, and thankful reflection. Nick has been through so much this past year... but the bottom line is he is alive and living life.  I know we all wish this could have been easier for Nick, recovery quicker,  but as I have said before... I have never heard a single word of complaint from him... never a "why me?".  He does what he has to do and lives his life as fully as he is able. He continues to be a remarkable hero.  Anyway... a very happy first birthday to you bud!!!

Nick has described the tattoo he wants to me but i don't think the artwork is ready yet.  He said it will have his 2 quotes that have gotten him through this... "live for tomorrow" and "don't think".  It will also have the number "21"... representing today's date, his birthday... and the biohazard and nuclear radition symbols being held by a "scarecrow",  the nickname his friends gave him when he was looking his worst.  I understand it was also inspired by the photo of Nick getting radiated...  remember it?


 



October 25, 2000, Wednesday - One Year, 4 days

Nick is back in the hospital.  On Monday and Tuesday he was having great difficulty breathing, to the point he was feeling faint with any activity.  He was admitted to the hospital on Tuesday around noon.  His blood oxygen level was extremely low so they hooked him up to oxygen and started runnung tests.  They don't believe it is GVH in his lungs because usually the GVH would be much more pronounced on and in Nick's body before it manifests itself in the lungs to the extent to cause this problem.  The chest X-ray looked fine, no evidence of GVH or pneumonia.  They ran a CAT scan this morning and will maybe go into his lungs with a tube camera depending on what the CAT scan shows.  Nick thinks it is just a virus that has taken advantage of his weekened condition and it will just have to run its course.  He hopes that this will be a short stay in the hospital.

Nick had the normal yet very frustrating experience with the insurance company.  He was feeling so bad he had wanted to go to the hospital on Monday but the insurance company denied the request and insisted he see his general practioner and "in group" specialist.   Nick went to see the GP on Monday and both the GP and the specialist advised the insurance company that they were "not quailfied" and "were afraid" to treat a BMT patient in Nick's condition.  The insurance company relented and approved Nick's admittance to the City of Hope for Tuesday.  Twenty four hours of potential treatment lost.  It is so incedibly frustrating... health insurance companies kill patients... it is not right... it is badly broken and needs fixing.



October 26, 2000, Thursday - One Year, 5 days

You just never know how these things are going to go.  Last night I was with Nick in the hospital and we were just sure that he would be going home in the morning.  This morning, Doc came in and said that lung ailments can turn very serious in BMT patients and they were going to keep Nick in the hospital.  They want to keep a close eye on him and are planning on going down into his lungs with a scope on Friday, and are even talking about doing a lung biopsy from the outside, which Nick says is a pretty major deal.  Doc told Nick that one of their considerations was that these lung things can be very very serious and they are concerned that if they turn him loose they will have trouble getting him back quickly if they need to... because of the insurance company.  A 24 hour delay in treatment, like happened earlier in the week, could have irreversible consequences.

Karen just called and told me that Doc just came in again, and told her first, and then Nick, that they are now concerned that the lung problem could be GVH.  They need to be absolutley certain whether it is GVH or a virus because if they treat Nick for the wrong one it will make his condition worse.  A lung wash and biopsy are scheduled for 9:00 am tomorrow morning.  Doc seemed to indicate that things are pretty serious.  We continue to hope this is a virus.  GVH in the lungs is scary.

On a happier note, Nick received word yesterday, while he was in the hospital, that he had been awarded an Honorable Mention and $250 cash prize in the Essay on Tolerance competition.  Nick has been planning a week long ski trip to Mammoth in December and says the money will come in handy for that.  He is very happy to have received this recogntion.  The competition sponsor is also considering publishing a book and said she will be talking to Nick about that in the near future.



October 30, 2000, Monday - One Year, 9 days

The scare is over... and it's not even  Halloween yet

Nick was released from the Hospital on Saturday!  They got the biopsy results back sooner than expected and saw no sign of GVH in his lungs! Great news!  What they did see they thought looked like the aftermath of a virus... inflamed bronchial sacs.  Doc says the virus should not have gone to his lungs like that.  They may be keeping Nick more immuno supressed than they should.  On Monday or Tuesday, Nick will go to the Doc to discuss reducing his GVH medications.  It sounds like they are going to be less aggressive in controlling the GVH and see what happens.  I think they are hoping that Nick will tolerate mild GVH and that his body will more quickly burn out the remaining GVH and establish a more normal immune system.  In any case, he is homw and we are relieved.



Novenber 7, 2000, Tuesday - One Year, 17 days

Nick is doing ok but just ok.  He still can't draw a deep breath or walk any distance without getting totally exhausted.  Doc still doesn't know what it is for sure but i guess we all think it will run its course.  Nick's weight is 136 pounds... 6-3, 136... very slim...  Nick plans to get his tattoo done on Thursday...we shall see.  Big News!  Nick's donor has contacted the Bone Marrow registry who contacted the City of Hope who told us that the donor is interested in meeting Nick.  That would be very exciting.  More on that as it develops.



Novenber 22, 2000, Wednesday - One Year, 32 days

Nick is doing ok.  He thinks his lungs might be getting a little bit better.  He went to see Doc on Monday.  They did an xray on his bones and say they appear to be paper thin.  This explains the bone pain he has.  It is apparently caused by all the Prednisone he has taken.  They are putting him on calcium and the will do a complete bone scan in the future.  Nick received the name and address of his Donor!   A forty year old man in Ohio.  Nick is making plans to contact him.  ... and also, Nick got his tattoo!  It is really cool!  Full of symbolism.  I will take a picture and post it here.



December 4, 2000, Monday - One Year, 44 days

Nick's tattoo.  Bad pictures, but they are the best I have right now.  I will get better pictures soon



December 19, 2000, Monday - One Year, 59 days

Nick is up in Mammoth with some friends and his sister Kirsten this week.  His lungs are still bad.  Kirsten called and said Nick went with then to the ski lodge but couldn't breath so they had to take him back to the condo which is at lower altitude.  We all had asked Nick to take oxygen with him but he refused.  He says he thinks when he comes back down he might be a little better because he thinks he is getting over a cold he had when he went up.  Needless to say we worry about him...  but this is typical Nick.  He keeps going when other people would be home in bed.  It is very difficult to keep him down... He is very busy trying to live his life.



Tatoo picture taken by Kirsten for her photography class




January 15, 2001, Monday - One Year, 86 days

Nick's lung condition has not improved.  They have run many tests and tried different things but nothing has worked to improve his breathing.  His lung capacity is at less than 50% of what is minimally normal for someone his age.  His oxygen level in his blood when he is at rest is not good.  He entered the City of Hope at 6:00am this morning for lung biopsy surgery.  It lasted about 2 and a half hours and they removed a section of lung about the size of a thumb.  They left 2 tubes, one is 3/4 inch in diameter, protruding from his chest to allow the frothy looking blood to drain and to be able to administer pain medication directly into the surgery area.  The surgery went fine and Nick is doing ok.  They will have biopsy results in a couple of days.  We hope they finally are able to determine what is going on.



January 17, 2001, Wednesday - One Year, 88 days

Nick continues to recover from Monday's surgery.  The recovery is going well.  They pulled the large drainage tube today and say they may replace it with a smaller one.  Nick seems relatively comfortable and there are no complications.  Doc came in to discuss the biopsy results.  He was very careful to explain that they really don't know what is going on or how to proceed at this time.  The biopsy showed no signs of virus, fungus or graft vs host disease or anything else that was treatable.  His lungs look like he has emphazema.  Doc says Nick has the lungs of a 70 year old who has smoked heavily their entire life.  Since this is not the case, they really don't know what could have caused what they are seeing or what to do about it.  Doc will speak with some lung specialists at USC and UCLA to see if they have any insight into this.  Doc says as far as he knows, emphazema is not treatable or reversible.  Doc says he doesn't want to speculate about the future until he has more information and more time to research.



January 31, 2001, Wednesday - One Year, 102 days

Nick's lung condition has been very bad since the biopsy.  He is on high levels of oxygen 24 hours per day and struggles for each breath.  He cannot walk even a step without becoming exhausted and starved for oxygen.  Eating and drinking exhaust him.  He spends 24 hours a day struggling to breath.  His oxygen needs sometimes exceed the liters per minute his machine can put out so we put him on bottled oxygen.  He has a large tank and numerous small tanks.  The large tank is supposed to last about 4 days but he is using such a high volume it is lasting only about 1 day.  We visited  3 Docs at the City of Hope yesterday.  We were somewhat encouraged when the surgeon told us that Nick's lungs might improve 4 weeks after the surgery.  We are hopeful that in 2 more weeks Nick will be able to breath a little better.  He also had the surgical stitches removed yesterday.  The air that was in Nick's chest cavity is dissipating well and they don't expect any problems from that.  A neuromuscular Doc examined Nick to determine if there could be a muscular cause or contribution to Nick's condition.  He says that while Nick's mudcles are small from inactivity, he does not believe that muscle failure is contributing to the lung problem.  BMT Doc says he believes Nick's lung damage is not treatable or reversible and that we should start the process of investigating a lung transplant.  Nick told Doc that he was very anxious to start the process so he would like to be referred to USC as soon as possible.  I have researched USC a little bit and they are on the cutting edge of lung transplant technology.  Things have been scary the last few weeks.  I will try to keep this updated more regularly now.  Please keep Nick in your thoughts and prayers.



February 6, 2001, Tuesday - One Year, 108 days

Nick began to improve over the weekend and appears to be improving a little each day.  A dear retired paramedic friend of ours came to visit Nick.  He has a lot of experience with emphazema sufferers... he responded to calls almost nightly and his father suffered from it..., and was able to give Nick some very helpful tips and tricks on how to deal with the nightly panic attacks.  He told Nick that he was not going to die during a panic attack and showed him how to get through them.  It was  a tremendous comfort to me and I think Nick as well.  Nick is using the techniques he learned and says they are helping a lot.  He is much more comfortable now although it is still a chore to stand up or move.  In my view, he is past the critical stage and is recovering from his biopsy.  The hope is that he will continue to improve to the point where he was before surgery.  His next goal is to reduce the level of oxygen he is on and be able to not require oxygen during the day.  We go to see Doc this afternoon and hope to be updated on Doc's pending referral to USC.  With Nick's improving condition I am less frantic to get him to USC right away.  I will ask Nick if he is still anxious to get the process going as soon as possible and we will prompt Doc accordingly.



February 7, 2001, Wednesday - One Year, 109 days

Yesterday's visit to see Doc was kind of tough.  Nick was feeling worse and was having great difficulty breathing following a rough night.  Doc told us he had contacted USC and the news wasn't real great.  Doc said USC's policy would not allow them to do a lung transplant on Nick until he remained cancer free for 2 years after his bone marrow transplant.  That will be October 21st of this year.  Also however, there is a 1 to 2 year waiting list for cadaver lung transplants.  Anyway, we will be referred to USC and should get the process started within the next couple of weeks.  Doc says our focus now will be to continue his ongoing treatment relative to the BMT and to refer Nick to a pulminary specialist and respitory therapist to see what can be done to maintain his condition and keep him as comfortable as possible for the long haul.  I was disappointed by the news as I am sure Nick was.  Our hope now is that Nick will continue to get better to the point he was at prior to the lung biopsy so that he can be relatively comfortable, and we are still hopeful that a live lobe lung transplant may be an option that could eliminate the waiting list.  We will find out more about this when we go to USC.

Both of Nick's sisters have discussed being live lung donors.  We really don't know anything about this.  I don't have have any concept of how this would affect the rest of their lives or how serious the removal surgery would be or how long the recovery would be or what the risks are... but it brings tears to my eyes that they are willing to do this.  If this becomes an option, there will be some heart wrenching decisions to be made.



March 21, 2001, Wednesday - One Year, 151 days

bad news... good news.... bad news....

Apologies for the long delay in updating this. Bad news..... Since the last update we have heard from USC that they will not consider Nick for a lung transplant until 5 years after his bone marrow transplant.  Doc says all transplant facilities have the same policy.  The focus is now getiing Nick in the best possible shape and comfortable for the long haul.

Good News....  Nick went to see another pulminologist (lung doctor).  They did blood oxygen tests on him and his blood oxygen levels have greatly improved.  They took Nick off oxygen while at rest during the day and Nick has been doing fine.  He is only on oxygen when he sleeps at night or when he moves during the day.  He remains very weak and becomes exhausted and out of breath with minimal activity.

Bad news... over the past week Nick has developed congestion in his chest.  Yesterday was a very bad day where he was on oxygen because he couldn't breath.  He also couldn't sleep or eat because he was feeling so badly.  He has graft versus host disease in his left eye and it causes him severe pain and discomfort... he says it is like having a rock in his eye that is just rubbing his eye raw.  It is bothering him a lot.  His knee pain has not been too bad.  He has been confined to bed, struggling to breath, in pain, since early January.  I can't begin to fathom how he handles what he is going through.  He is a 20 year old man who wants to be partying with his friends and living life and going to school and earning money and falling in love... he spends 24 hours a day in pain, strugling to breath, in his room... and there is no end in sight for this.  I feel so badly for him and I am very worried about this latest lung problem.  The last time he had something like this... last October...  it did irreparable damage to his lungs.  I hope that this is not doing more.  I feel very sad and helpless and afraid.



March 28, 2001, Wednesday - One Year, 158 days

Nick was in severe distress yesterday.  We could not move him to transport him to the hospital so we had to call 911.  The paramedics arrived and transported him to the nearest hospital.  He is in intensive care today.  They stabilized him and will keep him for another day and then decide where to send him.  He couldn't breath, was shaking severely, was having an anxiety attack and was scared.  He was coughing up some bloody looking mucus.   He felt like he could not move or be moved.  He may have pneumonia.  We don't know anything yet.  Please keep Nick in your prayers.  He is having a rough time right now.



April 2, 2001, Monday - One Year, 163 days

They transferred Nick to St. Jude Hospital last Thursday evening.  He was transferred by ambulance.  He continues to have a difficult time.  They have discovered a mass about the size of a plum in his left lung.  This is a new problem that has developed over the last few weeks.  It did not show up on earlier xrays.  They are doing tests to try to determine what it is.  They say it could be a bacterial mass or a fungal mass or a tuberculoid mass or some other thing.  They are saying they are going to have to do some sort of biopsy.  He hasn't recovered from the one in January yet so I am not too keen on this.  They will try a less invasive proceedure where they go down his nose with a camera and cutting tool as a first attempt.  They also have the option of a needle biopsy.  Hopefully they won't have to do the type they did in January.  They seemed to indicate that no matter what the mass turns out to be, it will probably take sometime to get rid of it with drug therapy.  Nick was in considerable pain last night and needed morphine.  His heartbeat was at 150 and his blood pressure has been very high.  He is unable to walk more than a few steps and is extremely weak and fatigues with any activity... eating, shifting in bed, ... anything.  He is getting breathing treatments that seem to be helping him breath better.  He has another road ahead of him but is determined to get well.  We really don't know anything... we will see how it goes.  We are powerless.  Send your good thoughts Nick's way.



April 3, 2001, Tuesday - One Year, 164 days

Today the infectious disease Doc says that one of the cultures they took is showing positive for a bacteria called Nucardia.  This bacteria is of the type that is usually not even noticed by the body of normal people but will take advantage of an immune deficient / compromised person... someone who has had a bone marrow transplant.  Doc says it will take 6 months of strong anti-biotics to get rid of it.. but it is quite treatable.  They started him on the antibiotics immediately.  He says the mass is about the size of a tennis ball and that it is hollow in the center.  The hollow space is where the lung has been eaten away by the bacteria.  As the abtibiotics shrink the mass, the hollow space will become scar tissue and should not be a problem.  All in all it sounds like good news... I think.



April 4, 2001, Wednesday - One Year, 165 days

This day, infectious disease Doc came in and told us that another of the cultures they took is now showing positive for aspirgilid.  This is a fungus that also attacks imuno supressed / compromised people.  All along, Nick has been taking Bactrim as a precaution against getting aspirgilis.  Bone Marrow Transplant Doc had always tols us that aspirgilis is not something that Nick ever wants to get.  It is a very tough fungus that plays havoc with lung tissue.  This can be fatal to BMT and AIDS patients.  Infectious Disease Doc says that usually when they see aspirgilis, it is numerous smaller masses througout the lung so he is not sure what is really going on.  He will start Nick on a more mild anti fungal medication just in case and save the really toxic stuff for if they really think it is aspirigilis.  They sent the culture to a lab in Texas to have it more positively identified.  They will do another CAT scan on Friday to see if the maas is shrinking or if any other masses have developed.  Nick's current issues are unrelated to the fibrosis / emphazema problem that began several months ago.  This is not the breathing problem he has although this is certainly making it worse.  His weight is 135 pounds and he is very weak... he is so very weak... unbelievably weak.   His heart rate is around 100 and the low number on his blood pressure is quite high.  Pulminary Doc is retreating from the picture now... I don't believe the primary issue is his anymore.. and he is  going on vacation for a week anyway.  The issue is fungus and bacteria, not lung function now... so that is ok.



April 5, 2001, Thursday - One Year, 166 days

This morning they took Nick down for a CAT scan.  There was some confusion because Doc told us it would be on Friday.  We wanted as much time as possible before the CAT scan because we don't want them doing another biopsy without giving the medicine a chance to work.  They also took him to surgery to have a longer lasting intravenous device installed.  It is called a "pic" device and it goes in his arm and up his artery and into his heart.  He was awake for this surgery and watched  the TV monitor the surgeon used to guide the tube up the artery... they put dye in the artery and could see what they were doing.  Nick tolerated the procedure well, although he is experiencing overall body pain... especially in his lower back.

This afternoon, Doc came in and told us that the CAT scan showed changes in the large mass that didn't sound good and what sounded even worse, was that they were seeing smaller masses developing throughout the lungs.  Now it is really starting to look like aspirigilis as well as nucardia.  They immediately started Nick on the heavy duty toxic antifungal stuff.  It is our understanding that this fungus... if it is aspirgilis...  is very difficult to get rid of.  Much harder than the 6 month Nucardia.  In addition, Nick's platelette count is very low.  This is a new problem.  His platelettes have been fine throughout the post transplant period.  Low platelettes could be a sign that leukemia has returned... or it could be something else I suppose.

A hemotology Doc came to see Nick tonight.  I was very glad to see him.  Nick's primary medical issue, the bone marrow transplant, has been completely ignored for the last few weeks.  The specialists we are seeing now just don't understand the fragile nature of the BMT issues.  We have done our best to try to explain to them... we have called BMT Doc to tell him what is going on and we have pleaded with the other specialists to keep BMT Doc in the loop but it is not happening to the extent we would like to see.  We are at St. Jude because this is where the insurance company insists that we be.  He should probably be at the City of Hope because all of this stuff is directly related to his BMT... but  we don't know... anything.  BMT Doc said the insurance company called him and tried to get him to agree that all future treatment for all issues should be at St. Jude.  THEY DON'T HAVE A BONE MARROW TRANSPLANT PROGRAM OR SPECIALIST AT ST. JUDE!!!!   BMT Doc says he told them in no uncertain terms he didn't think this was a good idea.  We think we need to be at the City of Hope but don't know how this will happen.  The insurance company determines how Nick will be treated.  I can only imagine that they have found it to be cost effective to take on this absurd liability of dictating his care... his life.

Anyway, I was glad to see the hemotology Doc because he could discuss Nick's BMT issue intelligently.  He was very concerned about the low platelettes... nobody else was,  he asked us all the right questions, and wondered out loud why Nick wasn't at the City of Hope.  He said he would call BMT Doc first thing in the morning becuase he didn't feel comfortable giving Nick platelette infusions without first consulting with BMT Doc.  Hurray!!!!   somebody that understands!!!!  He is a hemotology Doc, not a Oncology/Hemotology Doc and he knows his limitations... How refreshing!!!   He asked if Nick had had a bone marrow extraction recently.  He knew that the low platelettes could be because the leukemia has come back.  Everybody else appears to be clueless to this!!!  I am optimistic that this Doc can influence the other egomaniacal Docs that there are other issues going on here that they know nothing about and can persuade the GOD insurance company that maybe... i dont know... maybe... the patient should be at Hope.  Who knows... I dont...

I have shared much too much tonight.  I am full of uncertainty...  but, Karen and I,  have aggressive resolve to try to determine.. to try to understand... to try to obtain... the best possible care for Nick.  I am frustrated and afraid.  I have only one chance to do the best thing here... I have to do the best thing ... and I am not sure what it is ... or how to achieve it.

Ending on a positive note... Nick has battled many difficult situations and survived.  He can survive this.  Goodnight.



April 7, 2001, Saturday - One Year, 168 days

On Friday afternoon, after ten days at St. Judes, the Docs finally realized that they were in over their heads and shipped Nick by ambulance forty miles across town to the City of Hope.  Somebody finally figured it out.  Nick's BMT Doc is now back in chargeof Nick's care and was waiting at Hope to meet him when he arrived.  I am relieved Nick is where he should be.  Karen tells me he had a nose bleed that lasted 2 hours last night.  They gave him platelettes and that should take care of the bleeding. BMT Doc says that althought the platelettes are low, there is no indication that luekemia has returned.  That is really great news.  They will continue to treat Nick for the bacteria and the fungus.  They will probably do a lung biopsy... the only moderately invasive kind where they go down through the nose with a camera and a tool.  Nick's weight is now down to 132 pounds and he is very weak.  He continues to eat and all his digestive systems are working fine.. this is also good news.  I am happy Nick is at Hope.



April 25, 2001, Wednesday - One Year, 186 days

Tonight I would like to share with you what Doc and Karen and I shared with Nick this afternoon.

Doc explained to Nick that he is very seriously ill and that it is very possible the treatments they are providing will not be successful.  They will continue the treatments and provide Nick with everything he needs to remain comfortable.  He told Nick he was a courageous fighter and his best patient and that The City of Hope will do anything Nick wishes including sending him home if that is his desire.  Doc carefully communicated the reality of the situation without eliminating all possibility of hope.

After Doc left, Nick asked us "What just happened here?  Was Doc trying to tell me I am in really bad shape?"  And before we could answer Nick said, "Sheesh, like I didn't already know that?!"

The decision Karen and I made to tell Nick how serious the situation is, was made after much discussion with many knowledable and experienced people who quite frankly had differing opinions.  It was the hard decision to make.  It would have been easier not to tell him.  We made the right decision.  Nick knows what is happening.  Now he knows that we know what is happening too, and he doesn't have to pretend or protect us from the truth.  We are all on the same page and can deal with the remaining issues with the same understandings.

Later this evening we helped Nick fill out an "Advanced Medical Directive".  This is a form filled out by patients with potentially terminal illnesses which documents key decisions and directives of the patient.  I can tell you that we discussed the issues thoroughly with Nick and he made very courageous decisions, decisions that Karen and I fully support and agree with.

We have discussed the situation with Kirsten and Natalie and they too are showing great courage and understanding.  Their love, admiration and respect for their brother is such a rich and joyful thing to see.

Nick is comfortable, alert, and as always,  in command of his situation.  His sense of humor is sharp and on point... wonderful and delightful.  He makes it so much easier for us.   He is such a fun guy to be around.  So strong, so funny, so mature, so real,  so intelligent... such a hero...  such a hero.  Please think good thoughts about Nick and keep him in your prayers.



April 28, 2001, Saturday - One Year, 189 days

This evening, Nick passed on
in the same manner in which he lived his life,
With tremendous strength, courage and dignity.

Nicholas Michael
Lived
Forever my hero



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