Steven's Progress of Treatment for Leukemia

2002

Link to 2001 Progress, Pre-UAB

Important visitor information

Date

Event

Platelet Count

Hospital

MCC

UAB

Monday, March 25, 2002

Day +95

Steven passed away quietly today at 3:50 PM.  His family was present along with several of the BMT staff members including Dr. Salzman (who told Steven that he "could let go now, no more pain, go to the light."),  Steven's favorite nurse, Gina, Rhonda (Steven's nurse practitioner), Janet (our patient coordinator), and his pool nurse today (who was comforting), Janet.  So many people here told us that they had fallen completely in love with Steven because of his personality, incredible strength, willpower, and stamina to overcome so many problems, consideration to others, and he never complained through all of this.  Steven did everything he was told to do, many patients don't, and the doctors and nurses did everything they could to try to heal him.  Most patients don't survive one alveolar hemorrhaging (lungs bleeding) but Steven survived many recurrences and he strived to live.  He told me early on "I don't want to die, I have too much to live for."  Steven left a mark here at UAB, a legacy that will never be forgotten.  He will stay in our hearts and minds forever.  I have been so blessed to have had Steven in my life and to truly know him.  We will miss Steven terribly.

We didn't mention last week that the other 20 year old on the unit, Emily Woodruff, who had a BMT because of her AML disease,  passed away on March 19th.  She was born 6 days before Steven and died 6 days before him.  I will stay in touch with her dear mother, Marybeth, since we have so much in common.

We will keep Steven's website online so that others can learn from it and from the other cancer sites that are linked to this one.  Please feel free to continue to post messages to the message board.  If there are computers in heaven Steven surely has one.

We will post the beautiful BMT donor letters to the website in the next few days, one is from Steven's donor and one is to his donor.  They will touch your heart, please read them.

 

 

 

 

  X

Sunday, March 24, 2002

Day +94

4:00AM Steven is resting quietly.He is sedated and has the ventilator assisting his breathing with 100% oxygen.  This morning Steven's sedation was reduced until he was no longer under sedation but he didn't wake up; he had slipped into a coma.  We continued to talk to him and stayed with him around the clock.  We consulted with Dr.'s Vaughan and Salzman to find out if there was any hope left for Steven.  Steven was experiencing subcutaneous emphysema, his body had gone through all it could take and his organs were failing, he could not recover from all of the complications.  Later in the afternoon I asked Steven to give us a sign, if he could, if he wanted to keep fighting or not.  We found out later that his website went down around the same time; we couldn't bring the website back up until we got home to Troy to John's computer.  Steven's cancer was cured but, like so many of the BMT patients, the side effects had overtaken him.  In the last three and a half months we have seen many families mourn the loss of their loved ones on the unit, some of the patients had survived their transplants for a year or more (went home, got sick again and had to be readmitted) and some died within weeks or months of their procedures.  It is a very difficult place to be as you bond with the various families and suffer their losses with them.  There is room for 17 patients on this BMT unit and this month was especially bad with 4 patients passing away.  I am so very grateful, and so is Steven, that John was here with me all of this past week and this week.  He let me sleep some while he took care of Steven, getting him to eat and drink a bit, playing his favorite music on the laptop, cheering him up, and being so strong for us.

 

 

 

 

  X

Saturday, March 23, 2002

Day +93

Steven had a good nightís rest, because he was on sedation.Shortly after 7:00 AM They started to reduce the sedation. By 9:00 AM he started to come around.They adjusted the ventilator to where Steven was doing most of the breathing with some pressure.Stevenís stats looked ok until around 3:00PM.They increased the vent support and started the sedation again by late afternoon.Steven drank a can of boost and several spoonfuls of strained Vegetable soup.Steven is very weak. During the early evening the site around his trach-tube started to bleed.It took several hours to get this bleeding to stop.

 29,400

WBC
2.8

 

 

  X

Friday, March 22, 2002

Day +92

Steven had his vascath surgery at 9 this morning but it didn't work out because the vein in his right leg, where he had one of these placed before, had scarring.  The doctor decided to try to place it in his left leg later today and that surgery turned out well.  Steven was heavily sedated all day and tonight.

 

37,800

 

 

X

Thursday, March 21, 2002

Day +91

Steven didn't eat or drink much today; he seemed depressed.  Tomorrow he will undergo an in-room surgery to place a vascath into his upper thigh for the hook up to the GVVHD dialysis machine.  The one currently in his shoulder isn't working right anymore because it started clotting.  Steven was given more sedation so that he could rest for the procedure tomorrow, his oxygen level is set at 80%.  WBC is 2.17.

 

43,100

 

 

X

Wednesday, March 20, 2002

Day +90

Steven had a fair day today.  He ate a little breakfast this morning and went onto the Internet before lunch to read all of your postings on his website  http://reddlegg.dns2go.com/Leukemia/discussion2/default.htm    He also talked with some of his friends on his computer.  He ate some hot and sour soup from a local Chinese restaurant and part of a Frosty from Wendy's.  They had to raise his oxygen a little this afternoon.  Please keep us and all of the transplant families in your prayers.  Steven and the others are going through things that no one could ever imagine.  Our postings to the website can't express the physical, psychological, or the emotional roller coaster that the family and patients go through.  Again, keep us in your prayers and thank you for following along with Steven's progress.

 

52,500

 

 

X

Tuesday, March 19, 2002

Day +89

Well, today was better than yesterday.  Thank God John is here with us through the weekend and beyond; John is part of our strength and hope.  I slept late this morning while John was mother hen to Steven, (and Gina, fantastic nurse that she is, cares for him through Thursday) we have Steven approved to eat a soft food diet so, he had a yogurt, tea, and juice for breakfast.  Last night and, in fact, all day yesterday Steven wasn't scheduled to have anything to eat  unless someone put him down for a tube feeding of traumacal (yuck).  I gave him some applesauce and part of a Frosty from Wendys last night because I'm certainly not going let him starve to death.  Today we went to one of the Purple Onion restaurants (Greek chain of restaurants in Birmingham) for Steven's lunch because he wanted some hummus (they spell it hommos on the menu) which is mashed chick peas with sesame paste and garlic; it's a dip served with pita bread.  He also has Boost, a liquid shake, McDonald's shakes and whatever he wants that is mushy.  The nutritionist came by this afternoon and ordered a pureed diet for Steven.  His PEEP is at level 12, oxygen was at 70% but was raised to 75% based on his ABG late tonight and WBC count, this morning, was at 2.06.  Steven wanted to go on his laptop this afternoon, good sign, and I caught sight of him checking out his message postings on the internet.  Thank you to everyone who posts!  Steven constantly amazes everyone who cares for him, he is an exceptional patient, and top priority to the staff of UAB and, of course, to me!  How he keeps his sense of humor and stamina I have no idea; but everyone here loves Steven.   

 

65,600

 

 

X

Monday, March 18, 2002

Day +88

Early this morning I was called to the hospital by Steven's nurse; he was having trouble breathing, his oxygen level was raised to 100%, and, she said, he asked for me to be called.  We had a very difficult morning, Steven had to go from pressure support (breathing on his own on the vent) to assist support (when the vent controls the breathing).  Steven was fighting the vent, breathing out when it was trying to give him a breath, so he had to be heavily sedated to relax him.  He's built up such a tolerance for the sedative drugs though that he wasn't sedated for very long even though one of the sedation drugs was replaced with a different one he hasn't had before (propofol).  Also, his steroid dosage was doubled and steroids make you wide awake in addition to increasing appetite.  It took all morning to get Steven sedated and stabilized.  He is retaining more fluid again and the dialysis doctor's are increasing the fluid removal rate on the CVVHD machine.  After a nap this afternoon Steven was awake again and not very pleased to hear that he would not get to eat and would have to have another NG tube in his nose for medicines.  We explained what was going on: that the doctor wanted him to rest under sedation for a day or two so that he would not fight the vent, and could recover from the recent bleeding and setbacks.  He wrote "here we go again" on his notepad.  By late this afternoon Steven was improved enough to have his oxygen level lowered to 70%.  WBC - 3.17.

80,200

 

 

X

Sunday, March 17, 2002

Day +87

Steven's oxygen was raised to 70% early this morning.  We had a bit of a rough night with some coughing up of blood last night.  Today has been better though.  WBC - 4.73.

Late night update:  Steven's oxygen was lowered to 65%.

 

58,400

 

 

X

Saturday, March 16, 2002

Day +86

Steven is sleeping most of the time, the medications are making him drowsy.  Dr. Vaughan put Steven on a regular meal diet today, he is enjoying his meals when he is awake.  We cut his food up into small pieces so that he can eat it while on the vent.  WBC - 3.10.

 

46,400

 

 

X

Friday, March 15, 2002

Day +85

Not much is new today, Steven's levels on the vent are the same as yesterday.  He is being given 125 milligram doses of steroids every 6 hours now.  There is currently a platelet shortage at the hospital (please consider becoming a platelet donor).  Steven, along with many other patients, requires a lot of platelets along with blood still.  WBC today is 3.79. 

 

59,600

 

 

X

Thursday, March 14, 2002

Day +84

Steven's vent levels were adjusted today; he is on pressure support set at 12, PEEP is at 7, and his oxygen is 70%.  Since Steven can swallow liquid while on the vent and it's much more enjoyable that having a tube taped to your nose with no taste in your mouth, we got the ok to have the blasted NG tube removed and the liquid diet continued.  Amen.  Steven's blood pressure has been high for awhile now so, he is on blood pressure medication as well as the insulin drip for his high glucose from the other medicines.  The BMT doctors had one of their meetings today and I heard that Dr. Salzman agreed with me on something; Monday I was very concerned about Steven's bloody secretions and expressed this to the doctors saying they should increase rather than decrease the steroid dosage because I was afraid he was actively bleeding again.  That's what Dr. Salzman did when Steven had his last episode and, thanks to her suggestion at this meeting, that's what they did again today.  This afternoon's steroid dose was doubled.  It bothers me that this setback might have been prevented.  We understand the damage that can be done by the steroids but we have to weigh the options and, to Steven, death is not an option.  He has an incredible will to live and as long as he has this desire I am going to pitch a fit, if need be, to make sure that he has the best chance to survive.  WBC today is 3.21.

 

36.900

 

 

X

Wednesday, March 13, 2002

Day +83

I stayed up all night, had a nap this afternoon, and was grateful (as was Steven) that I was there when he needed me again last night.  We had another terrifying episode of Steven feeling as though he were drowning in blood and not being able to breathe.  It makes us so angry, feeling helpless with no answers, after coming so far and so close to getting Steven off of all the machines.  After last night's setback of Steven's lungs bleeding again and his return to the vent, he had to have yet another feeding tube inserted in his nose.  Steven's progress was halted again, he has not had a successful recovery as some may think, he has encountered many  complications and we are at a loss.  This morning an art line (arterial line like an iv) was sewed into his right wrist so that Steven's abg (arterial blood gas samples-to see if he is getting enough oxygen) could be drawn without sticking a needle into that site continuously.  Steven's platelets and WBC - 5.07 are higher today because of all the transfusions he had to have to overcome the hemorrhaging last night.  Steven is on 70% oxygen, pressure support of 10, and PEEP at 5.  Please post positive messages to Steven.

Emily Woodruff, the other 20 year old on the BMT unit, has suffered a stroke, is paralyzed on one side of her body and is now also on a ventilator.  Please keep Emily and Steven in your daily prayers.  This is so difficult for all of us.

 

45,000

 

 

X

Tuesday, March 12, 2002

Day +82

Today marks 3 months since Steven was admitted to the BMT Unit at UAB and it's been 7 months since he was diagnosed with leukemia.  What a roller coaster ride this has been and what a day we had again today, it's never an "ordinary day."

The "swallow test" was performed this morning; there is just one young lady who does this at the hospital.  This test involves a cup of ice and some blue dye.  The blue dye goes in the ice, Steven eats a piece of the ice and then, drinks some of the mix and his mouth turns Smurf blue.  Then they suction Steven's lungs and see if anything comes out blue to tell whether or not he is aspirating any of the liquid; to make sure it goes in the stomach and not the lungs.  Steven passed the test and, after approval by the doctor., a liquid diet was ordered.  She also let the air out of the cuff in Steven's throat so we could see if he could talk when she held a finger over his tracheostomy site.  And he could so, a "speaking valve" was ordered  (a little cap that goes over the trach allows the patient to speak, in their normal voice, when the air is out of their cuff).  A 23 year old quadriplegic college student, David Muir, invented this device for himself in 1990, I think it was, because he was depressed that he couldn't speak while dependent on the vent (the power of the voice!).  It was great to hear Steven's voice; he had juice, soup, and ice cream for lunch.   I got him a fruit smoothie, like a slurpee, this afternoon.  The NG (nasal feeding tube) was removed and tomorrow Steven may get to eat more solid food.  I've been waiting for 6 and a half weeks for Steven to be able to drink so I could go get him a Jamocha shake and what a pleasure it was to do that this evening and see him enjoy some of it!  The down side of this day was that there is still blood in Steven's secretions and we pray that this clears up.  There is no sure cure.  WBC - 2.78

Late night update:  Steven was coughing up much more blood tonight and is requiring more platelets and blood transfusions.  

Early morning update:  Steven has had more bleeding in his lungs and had to be put back on the vent so that he could breathe and rest.  This has been a very tough night.

 

31,300

 

 

X

Monday, March 11, 2002

Day +81

This morning Steven's pressure support was lowered to 2, his PEEP lowered to 2, and his oxygen set at 30%.  He had a small amount of blood in the secretions that were suctioned out of him last night and this morning so, the doctor is keeping his steroids at the level they are now which is two 60 milligram doses and one 40 mil. dose per day.  It took most of the day to get a sample of arterial blood from Steven to test his blood gases because it has to be taken from an artery in his wrist but his wrists and arms are black and blue and swollen from having the blood gases tested daily.  Every sample turned out to be veinous rather than arterial; Steven was mad at having to be stuck continually (it's so painful) and  I was in tears.  The nurses gave up because they didn't want to hurt Steven anymore and told the doctor that if he wanted  a sample he would have to get it himself; he did and it was decided that Steven's oxygenation was well enough to take him off of the vent at 4:20 pm.  An oxygen circuit was attached to Steven's trache site with 40% oxygen and Steven was at 100% saturation soon after that, better than his levels on the vent.   This is very good, the next step is to have a swallow test done tomorrow.  If that goes well Steven can have something to drink.  WBC - 2.92

 

27,500

 

 

X

Sunday, March 10, 2002

Day +80

Today Steven's pressure support was lowered to 4, his PEEP is at 3, and his oxygen is at 35%.  Dr. Vaughan was very pleased with the progress.

 

28,900

 

 

X

Saturday, March 9, 2002

Day +79

Since last night Steven's pressure support on the vent has been lowered to 6, his PEEP level to 3, and his oxygen to 40%.  His saturation levels have been good and these changes have been very smooth and gradual.  If Steven keeps up this great progress he will be off the vent early this coming week.

 

30,600

 

 

X

Friday, March 8, 2002

Day +78

Dr. Vaughan lowered Steven's pressure support from 10 (yesterday's level) to 8 this morning and, this afternoon, his PEEP was lowered from 5 to 4.  His steroid dose was 60 milligrams 3 times a day up until today when it was lowered to 2  60 mil.'s and 1 40 mil.  Steven has made good progress the last couple of weeks.  His WBC is 5.42  (that is, 5,420 abbreviated).  A normal white blood cell count is 4,000-11,000 and a normal platelet count is 150,000-400,000.   

This week he has finally enjoyed some of the Dum Dum lollipops that we got him for his birthday last month (after I talked him into it).  He can rinse his mouth out afterwards, there is a suction tube he can use, and his nurse practitioner said it's okay.  It's good to have some flavor of something.  The nurses say that he should be a poster person of mouth care management still.  Imagine not eating, drinking, or talking for a month and a half; bless his heart.  I can't wait to get him a milkshake that he can taste, and real food!

 

31,500

 

 

X

Thursday, March 7, 2002

Day +77

This morning Dr. Vaughan changed Steven's setting to pressure support ventilation.  This is good, Steven is still on the vent but breathing on his own (with PEEP and 40% oxygen)  the pressure helps to lift the aveolar in his lungs.  He's also receiving platelets every 12 hours now rather than every 8 hours.  Steven is my hero too!  WBC is 5.09.

 

41,000

 

 

X

Wednesday, March 6, 2002

Day +76

Not much to report today; Steven slept a lot and, this morning, he had some bleeding around the outer area of his tracheostomy.  Dr. Vaughan said that Steven's breathing pattern is the way they want it to be.

 

43,000

 

 

X

Tuesday, March 5, 2002

Day +75

The doctors decided to adjust the vent levels a bit today to slowly wean Steven down, he's now controlling his volume more.  Steven is on 60 milligrams of steroids 3 times a day now, it may be reduced tomorrow.  BMT treatment in some respects is voodoo magic still (I'm quoting a dr. on this) in that whatever might work they'll try and every patient is different and may respond differently.  Also today, Steven's feeding tube (also used to administer liquid meds) got clogged again; the nurse tried Pepsi, coffee, and the product called "clog zapper" but, nothing worked to unclog it.  Steven wrote "you may as well just change it out" so, she did.  This is an unpleasant experience and it's the 3rd time he's had to have one put in.  He's a sport and I'm on pins and needles.  WBC is 6.33

 

34,100

 

 

X

Monday, March 4, 2002

Day +74

Dr. Vaughan, head physician of the BMT team consisting of 4 physicians, is the attending doctor again beginning today.  He has kept up with Steven and the other patients as all the physicians do; they have regular meetings and discuss treatment plans.  Steven is at the level of steroid dosage now that he was at, in the past, when he had the bleeding problem in his lungs.  So, they want to take things very slowly and carefully before exercising Steven off the vent; wait a couple of days.   Dr. Vaughan said that Steven's mental status has been amazing; that he has really done well.  

 

34,400

 

 

X

Sunday, March 3, 2002

Day +73

Dr. Salzman was pleased with how well Steven has been doing.  We look forward to seeing Rhonda, Steven's nurse practitioner, tomorrow; she has been in Florida this past week (work, not vacation).  WBC today is 4.52.

 

28,200

 

 

X

Saturday, March 2, 2002

Day +72

This has been a progressive week; Dr. Salzman said that Steven's chest x-ray from this morning showed improvement and his PEEP level was lowered to 5 tonight.  Dr. Vaughan will be taking over as attending physician on Monday.  WBC is 5.28.  

 

30,800

 

 

X

Friday, March 1, 2002

Day +71

Steven progressed to a PEEP level of 6 today on the vent.  He has lost weight in the past few weeks; Steven weighed 91 kilograms and now his weight is 82 kilograms.  WBC is 4.63.

 

39,300

 

 

X

Thursday, February 28, 2002

Day +70

Good day today in that Steven had no setbacks.  He is still on kidney dialysis, feeding tube, monitor with electrodes attached to his chest and blood pressure cuff (that goes off every half hour:  this he described as "being held captive by the b.p. cuff").  Steven is also still on a ventilator (not out of the woods yet); this is still critical care.  What I'm trying to say is that Steven is a unique patient in that he can calmly use his computer, which is on a bed table usually used for meals, when he feels up to it watch t.v., and has a smile for everyone who says hello to him (keep in mind  he hasn't gotten to speak or get out of his bed in over a month).   Many or most patients in this condition are sedated to a point where they are asleep all the time.  Steven chooses to be more alert with a minimal percentage of Morphine and Versed administered to him.  He continues to require 3 units of platelets a day and sometimes a unit of blood.  This evening when Dr. Salzman made rounds she changed Steven's PEEP level on the vent to 7 with  40% oxygen.  WBC-4.32

 

39,200

 

 

X

Wednesday, February 27, 2002

Day +69

No big changes made today; 8-PEEP and 40% oxygen.  Some of Steven's antibiotics were  changed today.   WBC-5.63

32,500

 

 

X

Tuesday, February 26, 2002

Day +68

Today Steven's PEEP level was reduced to 8.  This evening his oxygen level  was increased due to his saturation levels after being suctioned.

27,700

 

 

X

Monday, February 25, 2002

Day +67

Steven's PEEP level was reduced to 9 this afternoon.  Steven's neupagen shots were stopped to see how he does on his WBC without them.

33,200

 

 

X

Sunday, February 24, 2002

Day +66

Steven had a fairly uneventful weekend, not much to report today.

 

20,300

 

 

X

Saturday, February 23, 2002

Day +65

The first level on the vent that is being adjusted is the oxygen and by tonight it had been reduced slowly to 40%.  The PEEP level will be worked on later as Steven progresses.  Steven has been sleeping most of the day whenever he can, the benedryl that he receives as a pre-med makes him drowsy; he still needs platelets every 8 hours and usually one unit of blood.   Something I learned from a nurse in the last 6 months is that benedryl and 2 tylenol taken together are the exact same thing that you would get in a couple of tylenol pm pills (and a lot cheaper).  Dr. Salzman said that if Steven wants to sleep during the day and be awake some at night it's ok until he gets to a level, on the vent, when he will need to do some additional exercising on his own.  This is going to take awhile.  We're hangin' in there.  WBC is 10.53 today.

If you can, please give blood and platelets to your local blood bank!  Steven used to be a regular blood donor himself but now he is one of those who needs blood products.  Of interest:  Steven's blood type was O negative and now it is O positive, the same as his donor.  Not everyone's blood type changes after a BMT.

 

27,500

 

 

X

Friday, February 22, 2002

Day +64

Late last night Steven's oxygen level was increased to 50% and today was relatively uneventful.  Dr. Salzman said that each episode of bleeding that he's had in the past since the initial one has not been as severe as the prior one; we also know what can stop that bleeding early on.  Now it's been decided to take a slower approach to reducing the vent levels, that is the oxygen and the PEEP.  WBC is 7.91.

Steven was glad to see John arrive tonight with an envelope of pictures from a TSU football game a few months ago.  They were from the after-the-game-band-show when he and his band members and frat brothers joined together!  By the way, thanks to Becky, Heather, and the rest of the girls (beautiful friends at TSU) for sending a big Happy Birthday card they made along with a terrific picture of themselves on the cover.  These things put a smile on Steven's face!  There's something about holding pictures of your friends in you hand and knowing they're thinking of you.

 

24,100

 

 

X

Thursday, February 21, 2002

Day +63

This morning Steven had a bout of coughing, this requires suctioning out of his trachea tube by the nurse, that produced some blood.  We'd been afraid of this happening again, of course.  Dr. Salzman said that it is at the same level of tapering dose of steroids that this has been happening in the past so, this evening she told us that she would leave him at the level of steroids he is on now for a few days longer.  Being on a high dose of steroids for an extended period produces it's own set of problems, but what choice do we have?  Steven's PEEP was set at 10 by this afternoon with his oxygen at 70%.  Tonight his oxygen was set at 40%.  Steven had a brief period of an irregular heart beat late tonight and his nurse ran an EKG; it returned to normal on it's own.  WBC is 9.11, the highest it's been; he still gets neupagen shots every other day to help boost this, so, it goes up and down the shots (DNA material) are $700 a shot.

27,900

 

 

X

Wednesday, February 20, 2002

Day +62

Steven started out this morning with his PEEP set at level 6 and his oxygen at 45%.  He was given his ablecet (IV antibiotic) by itself this morning and had a low fever, 99.  This afternoon Steven was given a unit of platelets and started running a higher fever with chills and high blood pressure, so, the platelets were stopped and sent back to the blood bank to be checked out.  Before another unit of platelets were given Steven was given benedryl  as a pre-med; usually tylenol is given as well but it can damage the liver.  Late this afternoon Steven had a heavy duty coughing spell, had to be suctioned, and felt like he couldn't breathe.  This is a terrifying feeling that he has experienced before and, along with the fever, (102 by now) he was exhausted.  His PEEP had to be increased to 7 and his oxygen set at 70%.  Many days, on the BMT Unit, for every 2 steps forward that you take it seems that you take another step back.  

The good news today is that we received the results of the latest bone marrow biopsy DNA test from Stanford that reveals whether Steven's marrow is now  his donor's, his, or a mixture of the two.  We found out that it is 100% his donor's marrow !  Now we just need to get Steven well.

   

31,700

 

 

X

Tuesday, February 19, 2002

Day +61

My sister and Steven's aunt, Nancy, was right; the tracheotomy was a cinch.  Steven went to the O.R. before 9:30 and was back by 10:30 AM.  By this afternoon Steven was asking for his glasses, his remote, and his laptop.  Before the operation his PEEP was at 7 and his oxygen at 70%, during the afternoon Steven's oxygen was reduced to 60%, and then to 50%.  Steven needs to get as much sleep at night as possible so that he may work on exercising his lungs during the day.  (No more up all night, sleep all day night owl stuff if he wants to make progress).  It was really nice to see Steven's face again without all of the props!  WBC is 6.95.

38,800

 

 

X

Monday, February 18, 2002

Day +60

Steven's PEEP on the vent was lowered to 5 this morning with his oxygen at 40%.  The doctors decided to try letting Steven breathe on his own for 2 hours, if possible, using a T Piece (tubing connected to the vent that allows the patient to inhale the 40% oxygen from the vent but do all the breathing work on their own).  This is the closest thing to being off the vent; it's a lot of work because if you haven't had to exercise your chest muscles that much in a month and have a tube down your throat to boot and a feeding tube stuck through your nose to your stomach, well, you get the picture.  Steven did well for a long while, then it got to be a bit too much work after 50 minutes, (though he denied it when asked) it was obvious that he was working very hard.  This exercise causes a bit of a setback for the patient because their oxygen has to be raised for them to recover and then gradually lowered again.  Steven was exhausted and slept most of the rest of the day while plans were made for a tracheotomy to be performed tomorrow morning.   Surgery is scheduled early in the morning  and Steven will rest the remainder of the day.  The trache will be connected to the vent, below the vocal chords, through Steven's neck.  This will allow him to periodically exercise his chest muscles by breathing on his own but allow him relief by being connected to the vent when he is tired.  This is also more comfortable for the patient, protects the vocal chords, and is a good way to be weaned off of the vent.  WBC today is 5.28.

 

57,400

 

 

X

Sunday, February 17, 2002

Day +59

John helped Steven put together the 152 piece Galactic Space Tank that Dr. Tolwanni gave Steven last week.  Dr. Salzman lowered Steven's PEEP to 6 this morning and his oxygen is at 40%.  This afternoon and tonight Steven had clogging in his tube that needed to be suctioned out.  It's painful to have to cough while they suction out this tube.   

 

31,700

 

 

X

Saturday, February 16, 2002

Day +58

Steven had a uneventful day, slept, watched T.V., and read the Tropolitan  (TSU student newspaper) that John brought from Troy.

29,000

 

 

X

Friday, February 15, 2002

Day +57

Today was somewhat like Monday, Feb. 11th, because Steven, who is getting the abelcet (IV antibiotic) every other day, was getting platelets at the same time as the abelcet, or amphotericine, and had the same reaction that he had on Monday - back and rib pain, high blood pressure and heart rate; his temp. was over 102.  When I noticed the bottle on his IV pole along with the platelets and other fluids I asked the nurse what it was and she said amphotericine.  I asked if that's the same as abelcet and she said she didn't know that I could look at his medication sheet.  By the time I found out what it was it was too late to stop the reaction.  Episodes like this are very frustrating because on Wednesday when he received the drug they made sure to give Steven just the abelcet, slowly, with no blood products and monitored him during that at which time he had no bad reaction.   Then, today they ended up doing the same thing with the same reaction as on Monday.  I had to argue to get his medication sheet changed so that on Sunday we don't have the same problem. 

 

30,200

 

 

X

Thursday, February 14, 2002

Day +56

Happy Valentine's Day.  

This morning Steven's PEEP level was reduced to 7 and he had a fairly good day, all things considered.  One of the highlights of the day was a visit from Dr. Tolwanni, kidney doc from India, who has a wonderful, caring bedside manner.  She was in Arizona during Steven's birthday; what a surprise today when she showed up with a heart shaped Valentine balloon and a gift wrapped present for him.  He had a gift for Dr. Tolwanni and for Dr. Salzman too - little crystal guardian angel pins.  Steven read email and postings to his message board including one from a favorite high school teacher.  

John was a genius to bring a computer to Birmingham for me to use and a laptop for Steven because, in addition to updating progress to the website, I can chat with Steven on the instant messenger when I'm not at the hospital.  Since he can't speak while on the vent, Steven's best way to communicate is to type on his computer.  I couldn't do without one now.

 

29,200

 

 

X

Wednesday, February 13, 2002

Day +55

Steven's oxygen level was set to 50% this morning, now it is at 40% with the PEEP level set at 8.  There are a variety of reasons for our setback and, to make a long story short, every one of them is being researched and investigated.  (We are awaiting various test results).  Fortunately Steven was still on the ventilator when we had the episode of bleeding, otherwise he might have had to have the tube removed and then reinserted (very unpleasant to say the least).  Now that he has been on the vent for over 2 weeks Dr. Salzman spoke to us about Steven having a tracheotomy as a next step since he has been on it for so long.  Steven is still absolutely amazing in that he keeps his positive attitude (we feed this off of each other; a BMT patient needs a coach who is there as much as possible) [keep praying].  This afternoon Steven was on his laptop reading his email and birthday greetings that he didn't finish last night and tonight he watched a DVD, American Pie 2, that we got for his birthday.  He hasn't felt like watching a movie in weeks so, this was great!  Meanwhile, I'm finishing reading the novel "The Rescue" by Nicholas Sparks.   

 

 

36,900

 

 

X

Tuesday, February 12, 2002

Day +54

Today marks 2 months since Steven was admitted to UAB hospital.

This morning Dr. Salzman lowered Steven's PEEP to 5; he was breathing on his own with good saturation levels, and she spoke about taking him off of the ventilator this afternoon.  Steven had a chance to go on his laptop and read many birthday greetings that were posted to his website that he hadn't gotten to see the day before since he was not feeling well then.  Steven was coughing again though, and had to be suctioned fairly regularly by the nurse; his lungs were bleeding again a little.  Another x-ray was ordered, then a CT scan, and his PEEP had to be raised to 8 with his oxygen at 60%.  Today Steven would have had another tapered dose of steroids but, instead, he was given a large dose to help stop what was happening.  The CT scan is an ordeal because Steven, the bed, the IV pumps, and the ventilator all have to be transported to another part of the hospital (this is the 4th scan he's had) and he has to be taken off of dialysis beforehand.  Steven was still reading the messages on his laptop until I had to disconnect it so that everything could be moved.  He squeezed my hand to let me know that he is still just as strong-willed as ever and that he could handle this ordeal again.  This was another very stressful day.

25,500

 

 

X

Monday, February 11, 2002

Day +53

Happy 20th Birthday

Steven started out okay this morning and his PEEP was lowered to 6 with his oxygen at 40%.  His WBC is 2.70, he had been switched to getting neupagen shots every other day rather than every day.  This afternoon Steven was receiving a unit of blood and an IV of abelcet, an antibiotic that he has had before and had no problems with, when he developed chills, high blood pressure, and increased heart rate.  Steven also developed a low grade fever this afternoon and had some coughing.  He ended up sleeping through most of his birthday and evening.  I was getting an uncomfortable feeling (Mom's intuition?)  and stayed late watching him sleep.  His ventilator circuit (hose that connects the oxygen to the tube down his throat) had come apart early in the afternoon, this has happened before and it's disturbing, and I was glad I was in the room because no one came when the alarm went off.  Anyway, this was not a happy birthday for Steven or me. :(

 

 

27,600

 

 

X

Sunday, February 10, 2002

Day +52

Steven's PEEP was lowered to 8 today and late tonight it was lowered to 7.  He hadn't been on his laptop in the last couple of days until I told him that he had some new postings on the message board so, he got on the internet and was happy to see so many Happy Birthday messages for him already!  Please keep posting.

25,500

 

 

X

Saturday, February 9, 2002

Day +51

This morning Steven's oxygen level was decreased to 40% and , this afternoon, his PEEP was lowered to 9.  Steven is patient and progress is good.

50,000

 

 

 X

Friday, February 8, 2002

Day +50

Emily Woodruff, whose birthday was on Wednesday, received her bone marrow transplant today from a matched unrelated donor.  We wish her all the best and keep her in our prayers.

After checking Steven's blood gases today they had to increase his oxygen for awhile.  Each day blood gases are checked by taking blood from an artery in the wrist.  Both of Steven's wrists and forearms are black and blue from this procedure.  Otherwise, not much is new and Steven is trying to get as much sleep as possible.

41,100

 

 

X

Thursday, February 7, 2002

Day +49

Today Steven's WBC is 8.20 and he is still making progress on the vent.  His PEEP, positive end expatory pressure, was reduced from 12.5 to 10 during the day.  (An average person's peep is at about 5)  Weaning someone off of a ventilator involves gradually reducing not just their oxygen level, (Steven's is at 40% now) but also their peep level, this process takes time.  Dr. Salzman is pleased with Steven's progress and the fact that he and she can communicate with one another because many patients who are on ventilators are so sedated that they cannot communicate as well with their physicians.  Nice platelet count today too.

42.400

 

 

X

Wednesday, February 6 2002

Day +48

Happy 20th Birthday to Emily today, another young patient on the BMT unit, who is awaiting her BMT!

Steven's WBC today is 6.25, he is now receiving neupagen shots every other day instead of every day.  (Neupagen shots improve the white blood cells).  Some good news today:  Steven's lungs show a bit more improvement and his oxygen level was decreased on the vent.  (keep praying)  One of the test results of his last bone marrow biopsy that was performed and sent off last month has come back; the cytogenetics test showed that Steven's bone marrow now has the normal xy chromosomes - meaning no Philadelphia chromosome found in his DNA.  Rhonda, Steven's nurse practitioner (the best!), was happy to relay this good news to us.  We are still waiting for the test that was sent to Stanford, in California, on whether Steven's marrow is that of his donors, his own, or a mixture of the two.  We want it to be that of his donors so that the leukemia is history.  Steven continues to require insulin shots since the steroids cause high glucose.

According to Dr. Salzman, Steven still has the best mouth care on the unit.  On or off the vent he continues his mouth care regimen.  You'd have to see it to believe it!

37.000

 

 

X

Tuesday, February 5, 2002

Day +47

Today Steven showed a little more improvement on his chest x-ray and his WBC is 8.08.  He continues to receive blood and platelets every day and is told to "be patient" because the lung improvement takes time if it's going to get better.  Dr. Salzman said that he is making baby steps and we have to take it day by day. He is, naturally, anxious to get off the ventilator.  Finally, the nutritionist has put Steven on a small amount of liquid food, in addition to his IV nutrition, that will travel via his nose tube to his stomach.  Called Traumacal, this supplement will give Steven a feeling of having something on his stomach other than air, medicines, and some water.

It would be nice if more TSU students and friends would post messages to the message board on this website since Steven checks it every day on his laptop.  (I know that there are around 300 students in the Sound of The South Band!)  A few of his friends have been wonderful about posting positive messages to Steven on a regular basis.  Steven is a tremendous example of strength and perserverance in his battle; the toughest of his young life.  He has spent almost 2 months in the UAB Hospital BMT Unit now and has lived the life of a leukemia patient for the last 6 months.  :(   Please help him to keep up his strong will to live!

 

23.000

 

 

X

Monday, February 4, 2002

Day +46

Steven has been getting a little more sleep today and tonight, (something that he has really been deprived of) so, that's good.  Not much more has changed other than a little improvement in his chest x-ray.  He watched some T.V. and went on the internet.  Dr. Salzman said that progress is slow right now and that they would re-evaluate when Steven might get off of the ventilator later in the week.  Now is the time for us to gather up our strength and hope again and remember what has gotten us this far.

21.000

 

 

X

Sunday, February 3, 2002

Day +45

John has been updating the progress page this weekend to cover the past week and he has been staying with Steven all night while I cover the daytime hours., I (Ann/Mom) have been a bit stressed out with all that has happened in the past 8 weeks.  It's difficult to leave Steven's side at all; each day is so unpredictable and frightening.  He communicates to us by writing on paper and has been eager to eat and drink again but still he is not allowed to, being on the vent.  Steven has lost a lot of weight, mostly fluid. 

Dr. Salzman is the attending physician this month and has a plan, based on a study of BMT patients who have experienced DAH (not a large study) .  She will keep Steven on a very high dose of steroids and taper them down slowly to try to completely stop the bleeding in his lungs.  Also, Steven will receive estrogen. She is hoping to have Steven off the ventilator by Monday, gradually reducing his oxygen, he is on 45% of oxygen tonight.  It's difficult for me to sleep and Steven has trouble keeping track of whether it is day or night although he is able to sleep, off and on, despite the high doses of steroids.

On another note, !9 year old Jesse was moved to another floor earlier this week and a 19 year old girl has been admitted to the BMT unit with CML. Her birthday is on the 6th of February and Steven's is on the 11th.  We keep them, as well as so many others, in our prayers.  

 

25.800

 

 

X

Saturday, February 2, 2002

Day +44

3:00AM  Steven has been asleep for several  hours now.

Steven has been resting most of the day.  He is still on a ventilator and dialysis.  He watched some TV.  

31,500

 

 

X

Friday, February 1, 2002

Day +43

(2:30AM) Steven's breathing has stabilized and his saturations are back to the normal range again. They havenít had to remove any blockage for a couple of hours.

(6:30 AM) Steven is resting quietly and there have not been any obstructions in his tube for several hours.All of his respiratory numbers are in the normal range now.He is still on ventilator and dialysis.

Steven has been resting most of the day.  They are clearing his ventilator tube every 4 to 6 hours during the day.

Steven is resting tonight after he watched some TV.  There is some information of the Respiratory Scyncytial Virus (RSV)  on the website now.

 32,800

 

 

 X

Thursday, January 31, 2002

Day +42

Steven was up most of the night on the Internet. He is sleeping calmly this morning.We may have to limit his Internet usage for a few days.

They doctors lowered the pressure on the ventilator to where Steven was breathing on his own this morning but had to increase the pressurebecause while he was sleeping his saturation and respirator levels fell too low.

The lung doctor decided to lower his pressure again to see how he would do off of the ventilator.After a while Steven got to where he could not breathe and even after they increased the ventilator to 100% he could not get any relief.They found that he had a blockage in his airway and the blockage had to be removed.The blockage continued to return for several hours.The doctors are concerned that it may be from more hemorrhaging.

 

 32,100

 

 

Wednesday, January 30 2002

Day +41

Steven is resting well this morning.He is still on the ventilator and dialysis.He should be a little more alert today.The doctors are pleased with Stevenís progress during the past 36 hours.They feel the steroids are working.Even his kidneys are doing better.The doctors said if he continues to improve then he may come off of the ventilator in a couple of days.

Steven is more alert and is writing a lot of questions down.One of the first was ďLAPTOPĒ.So we had to plug in his laptop for him.

Steven is moving slow but is able to chat with some of his friends on the Internet read his emails and he also wanted to read the postings on his website.

 

 29,900

 

 

 X

Tuesday, January 29, 2002

Day +40

Steven had a long hard night.He was sedated all night and is still on the ventilator and dialysis.They are going to perform a bronchoscopy this morning to see what is wrong with his lungs.

The kidney doctors say his kidneys are still in bad shape and they will continue dialysis.The lung doctors did the bronchoscopy today.The injected saline into Stevenís lungs and then drew the saline back out. They repeated these three times to see if the fluid cleared or not.If it cleared, then this would mean that the bleeding was in the upper part of the lungs.If the fluid got redder, then he would have hemorrhaging in the lower part of the lung.The fluids did get redder.So, this means that Stevenís lungs have hemorrhaging in the lower area.This is called; diffuse aveolar hemorrhage (DAH).†† They are going to treat the DAH with high dose steroids.This has been a very stressful day.

They decided to reduce the amounts of sedation gradually during the next 24 to 48 hours.

A skin specialist came by to look at Stevenís skin blistering problem.Steven has lost almost all of his skin on both feet.This is due to the swelling and the blisters that appeared as the swelling subsided.This was due to the gallons and gallons of fluids he has received during his stay.When his kidneys shut down the fluids swelled in his body and when the fluids could not be passed normally the saturated his muscles.Then this fluid tried to leach out through his skin which in turn caused massive blisters.Many are the size of water balloons.His fellow band members would never complain about blisters from marching if they could see Stevenís feet.

Steven started coming around during the early evening hours.He was able to ask questions by writing them on a piece of paper.He wanted to know what day it was and what was going on.

We explained to him what the doctors had found out during the procedure.He said he understood.He probably wonít remember because of the drugs that prevents a patient from remembering trauma.†† I sure wish we could have some, so we could forget too.

 

 32,900

 

 

  X

Monday, January 28, 2002

Day +39

(8:00AM) Steven had another bad night; he became short of breath and had to be switched to a full face mask for oxygen.  He started coughing up blood around daylight.  He is stable for now and hasn't coughed up any blood for a couple of hours.

Steven has had a rough morning.His breathing has gotten much worse over the past few hours.

Steven has been imtibated (placed on a respirator) this afternoon  and they have started dialysis full time again.They have Steven sedated and on full oxygen using the ventilator.

 

 40,000

 

 

  X

Sunday, January 27, 2002

Day +38

Steven had a rough night last night, he became short of breath and had to be returned to 100% oxygen.  Also, the kidney doctor had him returned to dialysis.  This time for one hour of hemo dialysis.  He has been receiving blood and platelets.  Steven's WBC is 5.94.  Please pray for Steven's lungs to clear up.

19.200

 

 

X

Saturday, January 26, 2002

Day +37 

Steven had a day pretty much like yesterday with the exception of receiving a unit of blood along with the platelets.  WBC is 3.750.  He took 2 laps around the BMT unit and I found a walker in the BMT outpatient area that he can borrow to try using in his room. Steven is no longer the youngest patient on the unit because a patient who is 4 months younger came on yesterday.  This young man, Jesse, is not a BMT patient but has a rare condition called TTP-Hus which causes his WBC to attack his red blood cells.  I met his mother, she posted a message to Steven's message board, and helped her to search for more information on the computer in the visiting room.  Please keep Steven and Jesse in your prayers as they both still have a long struggle ahead of them.

 

 15.200

 

 

X

Friday, January 25, 2002

Day +36

Steven's WBC is 4.340 today and he received 3 units of platelets but he didn't need any blood.  He took 2 laps around the BMT unit today.  Dr. Garcia encourages him to "walk as much as he can so that he can go home soon".  "Home" will be the UAB Townhouse, where I'm (Mom/Ann) staying now, or Hope Lodge - run by the American Cancer Society.  Steven has big blisters on the tops and sides of his swollen feet; it looks painful, this is not unusual for a BMT patient.  For the past week Steven has been using a device called an Incentive Spirometer.  The pulmonary physician suggested that he use this device that is connected to a mouthpiece. You inhale as deeply as you can to help lift up and exercise the aveolas, little sacs in the bottom area of your lungs where pneumonia can settle and develop, to help clear the lungs.

 

 26.900

 

 

X

Thursday, January 24, 2002

Day +35

Today Steven received 2 units of blood and 2 units of platelets.  His WBC is 4.080 and he is on 2 liters of oxygen.  As his steroids are being tapered down Steven is a little more tired.  It didn't help that he stayed on the internet too late last night. :)  But, anyone who has spent time in a hospital knows that you can't get that deep REM sleep there that you can get at home because every time you fall asleep they wake you up for something.  Also, Steven doesn't have as good of an appetite but you can't keep someone on high doses of steroids for very long.  (Steroids increase energy and appetite)  Again he took one lap around the BMT unit with the help of his physical therapist.  Despite the aches and pains, it's still a good day!

 26.100

 

 

X

Wednesday, January 23, 2002

Day +34

Today Steven's WBC is 4.100, excellent progress as we have been waiting for the white blood count to rise, a sign of engraftment of his new marrow.  The last numbers to rise in this process will be the platelet count.  Steven received 2 units of platelets today, one in the morning and one in the evening.  This morning Steven was on 5 liters of oxygen, his nurse said that by afternoon he could be reduced to 4 liters, and by this evening he was improved enough to require only 3 liters usage of oxygen.  His physical therapist, John, assisted Steven in a one lap walk around the bone marrow unit with the help of a wheeled walker.  Steven's feet are still so swollen that his slippers don't fit, so socks and shoe covers will do for now.  Fred Flintstone's feet have nothing on Stevens' right now, mobility should improve this uncomfortable problem.  

 

 18.600

 

 

X

Tuesday, January 22, 2002

Day +33

Steven is glad to be off the CVVHD dialysis machine, the monitor, and is taking most of his medicines in pill form.  He received 2 units of platelets today and 2 units of blood.  His oxygen level is slowly being reduced, chest x-ray shows some improvement in his lungs, and his kidney function is improving.  Tonight he enjoyed a shower with the help of an oxygen tank.  Steven's feet are still extremely swollen from all of the IV fluids that have been pumped into him for the past few weeks.  This edema is in the tissue and it will take time for the swelling to go down.  It is painful for him to walk and he will have to take it slowly learning to walk on them again.

  9.800

 

 

X

Monday, January 21, 2002

Day +32

 Steven is still on dialysis today.  His WBC are above 3,000 today.  He ate all of his breakfast and was asking what he missed yesterday.  He is resting quietly now.

The kidney doctors decided to take Steven off of dialysis this afternoon.  Due to Steven's kidney function  improvement.  The vascath catheter that hooked him up to the CVVHD dialysis machine was removed and Steven got to get out of bed finally and sit in a recliner.

 

 19,400

 

 

Sunday, January 20, 2002

Day +31

Steven had a seizure this morning at 5:20AM.  They think it might be from the Cyclosporine.  The doctor's have requested a CT scan and a MRI.  The CT scan did not show any brain damage or bleeding in the brain.  The MRI shows high toxicity of cyclosporine.  They have taken Steven off of the Cyclosporine and increased his anti-seizure medication.  They are keeping him sedated so he can rest.  His WBC is 2,200 +.  Steven slept all day and evening, he really has needed some uninterrupted sleep.  Nothing to eat all day or night.

 19,100

 

 

Saturday, January 19, 2002

Day +30

Steven is still on dialysis today.  His WBC has risen to 1500+ which is a good thing.  A normal WBC is 4,000.  WBC helps to fight infection.  

The night time WBC was 2000.

 20,400

 

 

 X

Friday, January 18, 2002

Day +29

Steven's preliminary bone marrow biopsy reveals no leukemia cells are present.  More testing will be done to find out if the Philadelphia chromosome is present and to find out further information.  Good news!

Steven is still on dialysis today.  He had a visit by the pulmonary, infectious disease, and kidney doctors.  Steven is still on dialysis.  He received his new laptop today that uncle Mef bought for him.  It is a Dell with windows XP home.  He felt well enough to go onto the Internet and read some of his email.  

 21,000

 

 

X

Thursday, January 17, 2002

Day +28

Steven is still on dialysis today.  He had several teams of doctors visit him today.  The pulmonary team said they thought his lungs looked slightly better, They kidney doctors checked on him too.  His temperature is still normal.

17,300

 

 

X

Wednesday, January 16, 2002

Day +27

Steven had a bone marrow biopsy today, performed by Dr. McGee, obtaining marrow and a bit of bone from the back hip area so that the doctors can determine whether or not leukemia cells are still present.

Steven's kidneys are having problems functioning Dr. McGee placed a Vascath stint in Steven's groin to in order to place him on Dialysis today.  Steven's breathing has improved slightly and his temperature is still normal.

21,400

 

 

X

Tuesday, January 15, 2002

Day +26

Steven still feels bad this morning.  They still have Steven on oxygen.  Still, no plans to do perform a bronchoscopy .

20,000

 

 

X

Monday, January 14, 2002

Day +25

Steven's breathing is better this morning and the doctor's have decided to postpone the bronchoscopy  for a few days.  Steven is on more steroids and antibiotics.  They believe this is what is helping Steven's breathing.

35,200

 

 

X

Sunday, January 13, 2002

Day +24


Steven's Breathing is much worse this morning.  We talked with Dr Garcia and he has ordered a CT scan of Steven's lungs.  They have scheduled the CT for later this afternoon.  He told us that Steven might have to be put back on the ventilator.  He also said that he is requesting that Steven have surgery on Monday morning to retrieve a biopsy from Steven's lung.  They will place Steven on a ventilator before surgery.  The surgery will be a small incision in the chest and lung.  They will use a scope to explore the questionable areas and will also place a tube so they can drain the fluids off of Steven's lungs.  They have Steven on steroids, antibiotics and pain medicine for now.

His fever is lower and his breathing is better.  The doctor's said they would not do the surgery, they want to do a bronchoscopy  instead.  This is scheduled for tomorrow morning. 

 11,300

 

 

 X

Saturday, January 12, 2002

Day +23


Steven is still having problems breathing.  His white counts are up a little today.  He has a slight fever.  
10:00 AM

Steven
feels very weak.  It is hard for him to move around very much without resting.  He is coughing up some blood.  We bought him some cheese pizzas and some other "real" food that he wanted.  He is still too weak to eat very much.

 21,600

 

 

X 

Friday, January 11, 2002

Day +22


Steven is having some problems breathing.  He hasn't felt like going on the Internet during the last few days, so we know he doesn't feel very well.  He has some swelling of his legs and feet.  The nurses are keeping them wrapped to help reduce swelling.

 10,900

 

 

X

Thursday, January 10, 2002

Day +21

Today Steven received 1 unit of platelets and 2 units of blood. Last night he received blood also. Steven has had swelling in his legs and feet from the kidney function problem and his nurse, this afternoon, wrapped them in ace bandages to help keep them from swelling as much. He has to keep his feet elevated as much as possible. Steven has enjoyed going on the internet this week. He looks forward to seeing John tomorrow evening.

11,000

 

 

 X

Wednesday, January 9, 2002

Day +20

20,800

 

 

 X

Tuesday, January 8, 2002

Day +19

Steven felt better this morning, Dr. Vaughan sent him on a "road trip" in a wheelchair to get a more accurate chest x-ray than the ones he has been getting in bed. Later, in the afternoon, I asked Steven if he'd like to get on the internet and he said yes.

Steven received  2 units of plasma and one unit of platelets today.

Dr. Vaughan said that Steven is off all the antibiotics except cipro, and vancomycin (every other day). The chest x-ray looked bad according to Dr. Vaughan but he said since Steven hasn't had any fever it reveals how bad his lungs had been (honeycomb effect) and that he is getting better, we hope. 

Steven's ANC count is 348, coming up, which is good and usually a sign of engrafting. So, his counts are ok. The sternal bone marrow aspirate revealed some Philadelphia chromosome still in his marrow. This could mean that it is taking it awhile to die off, they don't know yet, and Steven may have to have another aspirate of marrow next week to see what it looks like. Dr. Vaughan said Steven is certainly giving the doctors a lot to talk about.

 

21,000

 

 

X

Monday, January 7, 2002

Day +18

Steven had to have oxygen during the night due to coughing.  He will receive more O negative, CMV negative blood today.  He was able to take a shower today with out assistance.  His temperature is still normal.  Steven feels a tiny bit better today even though his counts are still low.

14,000

 

 

X

Sunday, January 6, 2002

Day +17

Steven's temperature has been normal all day.  He was able to take a shower today.  The doctors gradually reduced his oxygen until he has able to breath safely without the oxygen.  He also received 2 units of blood today.

13,000

 

 

X

Saturday, January 5, 2002

Day +16


Steven is doing better his sugar levels have come down some, and potassium is normal now.  His breathing and blood pressure is much better too.  1:30AM

Steven
is doing much better this morning.  His blood pressure, breathing, sugar levels, and potassium is better this morning.  His temperature is also normal this morning.  6:00AM

11,600

 

 

Friday, January 4, 2002

Day +15


Steven's temperature was 99.3 at 9:30 AM.  He is still very weak and will continue to receive platelets today.

Dr. Vaughan decided to do an aspiration of bone marrow from Steven's sternum at
11:50 AM.  Dr. Vaughan wanted to look at Steven's white blood cells and check for leukemia cells.

The procedure went well.  Dr.
Vaughan said that they did not see any indications of rejection, and did not see any mature bad cells.  Steven's DNA was sent off to be checked for the presence of Philadelphia chromosome.

Steven is having a rough night.  His potassium and sugar levels are very high.  He is also having shortness of breath and blood pressure is high.  Temperature is still in the nineties.  
9:00PM.  They are giving him insulin to bring his sugar and potassium levels down.  The doctors think it is the steroids that are causing these to be high.

 5,000

 

 

Thursday, January 3, 2002

Day +14


Steven's temperature was 102.5 after lunch today.  He is very weak today.

Steven's temperature was 101.2 at 5:00 PM

Steven's temperature was 100.2 at
7:30 PM

 16,200

 

 

 X

Wednesday, January 2, 2002

Day +13


Steven is still on the respirator but is able to breath on his own.  His temperature has risen to 102 this morning.  He smiled and gave us a thumbs up when we told him it had snowed at home in Troy.  

His temperature is back in the 100.4 range.  Steven continues to breath without assistance from the machine.


Dr. Vaughan took Steven off of the ventilator at 3:45PM.  He is breathing on his own with minimal oxygen.  The doctors told him not to talk for a couple of hours.  The doctors said that Steven is the first patient they've ever seen operating his laptop while connected to a ventilator!  He wanted to read his message board and his email.  Steven also wanted to know when he could consume real food instead of meds.  He ate vanilla pudding and ice cream this afternoon.

 

 15,400

 

 

Tuesday, January 1, 2002

Day +12


Steven had a very rough night.  They had to keep him sedated throughout the night.  His temperature fell to 94.8 so they had to start a heating blanket to raise his temperature. This morning his temperature was around 99 degrees.  

They were able to turn his respirator down to 40% oxygen and he is breathing better. They are concerned about his kidney functions.  his temperature is around 99.  They say that the steroids is most likely why his temperature has dropped.  


Tonight he was able to write several request on a piece of paper for the nurse and he also nodded his head when asked if was looking forward to getting back on the Internet to talk to his friends.

 21,000

 

 

Monday, December 31, 2001

Day +11


Steven had a very poor day.  His temperature went from 100.4 to 104.6 within a couple of hours.  His breathing became labored.  The doctors decided to perform a bronchoscopy .  Steven was having a hard time breathing even with 100% oxygen.  They decided to place Steven on a ventilator prior to the procedure.  The procedure was done without any problems.  They collected samples from Steven's lungs that will be sent to the lab for cultures.  Steven  will remain on the ventilator for several days until his breathing is back to normal.  They are going to keep him sedated during the night so he will be able to rest.  His temperature was down around 102 by 6:00PM.

 21,800

 

 

Sunday, December 30, 2001

Day +10


Steven still had a high grade fever at 8:00AM, it was 104.8.  Sr. Salzman said they were going to change the antibiotics and start Steven on steroids.  They are also going to give Steven something to help reduce the water retention.  He has been gaining weight.

Steven's temperature has been falling most of the day and was down to 100.6 at around 4:00PM.

We received a call at 8:15 letting us know that Steven's temperature was up to 105.4.  We arrived at the hospital and his temperature was down to 105.3  9:30PM.  Dr. Salzman asked for a chest X-Ray and we are awaiting the results.

 31,000

 

 

 X

Saturday, December 29, 2001

Day +9

 

At 12:00AM Midnight, Steven's temperature was 103.3.  He is still running a high fever but in the short term it has fallen slightly.

Around 9:00AM, Steven's temperature was 103.1.

After Steven's last temperature reading Dr. Salzman decided to give Steven Tylenol to bring Steven's temperature down.

 Steven's temperature was 101.9 at
12:09PM.

Steven's temperature has been rising all afternoon.  It was 102.8 late in the afternoon, 103.5 around 6:00PM, and is now 104.3 at 8:40PM CST.  They are still giving him platelets and Tylenol to help his blood counts and fever.  

Steven's temperature is 103.3 10:00PM

 24,100

 

 

Friday, December 28, 2001

Day +8


Steven still has a fever of 102.6.  Dr. Lopez said he has a fungal infection that has been very difficult to treat.  They did another chest X-Ray this morning.  They took Steven down this afternoon for a CT scan of his chest.  Dr. Lopez said the  X-Ray from last night was clear.  Steven is receiving cyclosporine, zythramician, amphotericin and several other medications to fight the infections.

Steven has been running a high fever all afternoon.  His temperature was 103.8 at around 4:00PM CST.

Steven's Temperature has risen to 104.6 at
6:00PM CST.  

The results from the CT scan showed a small spot (mass) on the upper portion of his right lung.  They may have to use a scope or a needle to perform a biopsy if his temperature doesn't respond to the antibiotics.  He has been receiving platelets during the early evening.

At around 8:00PM Steven's temperature was 104.1.  The Doctor on duty said that she reviewed Steven's CT scan and said the pelvic region was negative, but showed a small amount of fluid around his kidneys.  This is normal with the amount of fluids Steven is receiving. 

At 12:00AM Midnight, Steven's temperature was 103.3.  He is still running a high fever but in the short term it has fallen slightly.

10,400

 

 

X

Thursday, December 27, 2001

Day +7

Steven received platelets and blood today.  Dr. Lopez decided to remove the catheter from the right side of Steven's heart today.  Dr. Lopez said that there has been some infection in this catheter so it was better to remove it.  We asked if they will do surgery to remove the catheter. Dr. Lopez said no it is just pulled out.

The nurses asked if they could leave the catheter in until they finish giving Steven his blood and platelets.  Steven was placed on a Morphine pump today.  Dr. Lopez said that Steven will be experiencing more pain during the next few weeks so the pump is needed.  Steven was apprehensive about the pump but Dr. Lopez explained the need. Steven is still running a fever of 102.  

Dr. Reynolds removed the catheter from the right side of Steven's heart around 10:00PM CST.

12,700

 

 

X

Wednesday, December 26,  2001

Day +6

Steven is still having fevers in the low 100s.  He had a chest X-Ray, antibiotics, and other medications

 6,500

 

 

X

Tuesday, December 25, 2001

Day +5

Christmas Day

Steven is awake and was able to open Christmas gifts from his father and his father's family.  

 14,700

 

 

Monday, December 24, 2001

Day +4

Today Steven has been resting.  Hi fever has been in the low 100s.  He was able to open a few Christmas gifts from Family.  It was a good day overall.


They started him on the nutritional meds today.  This should give him more strength.

 20,600

 

 

Sunday, December 23, 2001

Day +3

Today Steven's fever was down to 99.1.  This is good news.  He was able to get out of bed and move around his room and take a shower.  They still have Steven on antibiotics, and preventative rejection drugs.  Steven's appetite is still minimal, but he keeps trying to eat.  They haven't had to place him on any nutritional meds yet.  3:33PM CST            

 40,300

 

 

Saturday, December 22, 2001

Day +2

Steven's fever was down to 102.2 around 12:30AM.  It looks like it may break later in the morning.  1:00AM CST


Steven still had a fever this morning of 102.1.  He was up eating breakfast, but was still very tired.  7:30AM CST

Steven's fever rose sharply to 104.1.  

Steven is resting quietly.   Steven's fever has dropped to 102.6 and still receiving antibiotics.  
11:23AM CST

Dr. Lopez said that they have determined that there is a bacteria in Steven's blood.  They are now giving Steven a stronger antibiotic that is specifically designed to go after this type of bacteria.  Steven's fever is down to 101.1 after receiving the new antibiotics.  12:53PM CST

Steven's fever was down to 101.1 at  
12:12 AM CST

 56,100

 

 

X

Friday, December 21, 2001

Day +1

Steven is doing well.  We are waiting for his counts to rebound from the chemo and transplant.  This may take several weeks.  

Steven had an unexpected visit from two of his college friends today.  He was  very happy to see close friends from college.

Please keep making posts to Steven's message board  coming as well as the prayers and letters ( Link to mailing address ).

Steven has had a fever, chills, and aches throughout this evening.  Steven has a fever of 102.7.  They ran blood tests, urine tests, and a chest X-ray to determine the cause of these symptoms.  They think he has an infection.  He was resting quietly as of 8:00 PM CST

Steven's fever has risen to 103.4.  The X-rays show some signs of pneumonia in the lower right lung.  They are continuing to give Steven antibiotics and monitoring him by the minute.  His face looks very flush.  He is awake.  He said he felt very hot when he awoke.  11:11PM CST
 

 51,500

 

 

Thursday, December 20, 2001

Transplant day 0


The Donors bone marrow arrived on floor at 11:35AM CST

Premeds Started at
11:36AM CST

2nd doses of premeds given at
11:52AM CST

Transplant started at
11:55AM CST

Transplant finished around 1:20PM CST.

Steven is very tired from the medications, but he is doing well.

 59,700

 

 

X

Wednesday, December 19,  2001

Chemo

Atgam

Steven has been very sick this week, as expected, from the high doses of chemo. Vomiting and diarrhea are part of the normal reactions to the regimen of treatment. The transplant is on schedule for tomorrow. The donor should have been admitted to a collection site yesterday and the marrow extraction will be performed today. One thing we haven't mentioned is that both Steven and his donor are CMV negative, for more information on the CMV virus please go to the progress page on this website. This is very good news, because it reduces the chance of certain complications that are caused by infections. Also, Steven is the first patient at UAB's BMT unit to be a participant in a clinical study on a mouth rinse treatment in addition to their regular rinse treatment and is doing very well using that. Patients are not allowed to use a toothbrush or dental floss because of the risk of irritation and infection of the mouth. Thank you to everyone who is posting messages! Keep on posting please and we will keep you updated. Love to all.

The Donor's Bone Marrow Arrived at UAB at 7:00 PM.  Steven is doing well and is looking forward to the transplant tomorrow.  Keep us in your prayers.

 

 85,100

 

 

X

Tuesday, December 18, 2001

Chemo

Cytoxan , Atgam and Mesna

Steven's Donor should have been admitted today

 110,800

 

 

X

Monday, December 17, 2001

Chemo

Cytoxan , VP16 , and Mesna

Steven had 4 liters of VP-16 fed into his IVs this morning and got pretty sick, as expected, but his nurse said that she has never seen anyone do as well as he has been doing. While he was pretty much out of it, Santa came through the unit on a mobile sleigh with his "band" and singers! I didn't realize that Santa could sing so well and plays the mandolin. They played and sang "Rockin' Around the Christmas Tree" outside of Steven's room, we had the door open so he could hear them. On Saturday, Dec. 15, John and I attended the BMT 10 year reunion of bone marrow transplant patients. UAB has performed over 750 BMTs in the last 10 years and Steven's outpatient nurse, Diana, had a BMT 10 years ago. We met some wonderful people there, including Abby Murphree who is a 19 yr. old BMT patient. Kelly, another patient visited with Steven and this lifted his spirits. We also got to see 31 yr. old donor recipient Clarence Martin of Phenix City meet his donor, Air Force Lt. Todd Carlson, for the first time! This was a tearful moment for everyone.

 

 150,700

 

 

X

Sunday, December 16, 2001

Steven felt much better this morning.

Busulfex (busulfan) , and Atgam

152,800

 

 

X

Saturday, December 15, 2001

This was a very tiring day and night.  Steven received his first doses of 
AtgamAtgam goes after the T cells in the body.  The first dose kills about 90% of the T cells which, make close to 100% of patients ill.  Steven made it through this dose with only a few side effects (tiredness, vomiting, and Nausea. )

Busulfex (busulfan) , and Atgam

153,000

 

 

X

Friday, December 14, 2001

Steven continues to receive chemo each day.  He is spending most of his time on the Internet, watching DVD's, and reading email.

Busulfex (busulfan)

 

142,500

 

 

 X

Thursday, December 13, 2001

They started Steven's chemo today.  The nurses say Steven will grow weaker each day.

Busulfex (busulfan)

140,500

 

 

X

Wednesday, December 12, 2001

Steven will be admitted to the BMT unit


Steven was admitted to the BMT Unit at UAB.   He is doing well but he said, "I feel like I am in a prison."   They started Steven on a hydration drip during the night to help hydrate his body before proceeding with the chemo.

Steven can receive cards and letters while in the BMT unit.  His address is on the web at: http://reddlegg.dns2go.com/Leukemia/mailing_address.htm  

The BMT unit has many rules :

1.  Do not send any plants, flowers, fruits, or candy.  They will not be allowed inside the BMT unit and will be returned.   Also, please do not bring anything that may collect dust (balloons, toys or other display objects.)  These items have to be removed and re-cleaned each day.  They collect dust and dust carries mold that cause infections that may lead to severe complications or could be fatal.  In addition, please do not bring any home-made food items.  At this point, Steven is on a strict neutropenic diet.  Home-made items could cause nutritional problems for Steven.
NOTE:  
Please do not wear perfume, cologne, or any other scented products.  BMT patients may become very nauseated by even slight odors.


2.  At the entrance of the BMT unit each person (visitors and staff)  Must decontaminate their shoes, hands, and all items brought into the unit.

3.  Each visitor MUST report to the nurses station for the patient you are visiting.

4.  Each visitor must fill out a questionnaire before entering the patient's room.  NOTE:  If you have or have been exposed to anyone that has a cold, cough, or any other illness please do not come to the UAB BMT unit.  You will be asked nicely to leave the BMT area.

5.  There is a notebook outside of Steven's room that should be read before entering or taking any items into Steven's room. (Will take about 30 minutes or more to read)

6.  All items must be washed with a special antibacterial and fungus spray.  (video tapes, dvd's, computers, cables, gifts, etc...)

7.  Leave all personal items outside of Steven's room.  (coats, purses, hats, etc...)

8.  DO NOT TAKE ANY FOOD OR DRINK INTO STEVEN'S ROOM.  LEAVE IT OUTSIDE ON THE COUNTER.

9: DO NOT ENTER STEVEN'S REST ROOM FOR ANY REASON!!  CALL A NURSE.

10.  EVERYONE MUST WASH THEIR HANDS OUTSIDE OF STEVEN'S ROOM -- BEFORE ENTERING STEVEN'S ROOM.  EVERY TIME!!!!!!! EVEN IF YOU STEP OUT TO ASK THE NURSES FOR SOMETHING.

11.  IF YOU COUGH, SNEEZE, OR TOUCH YOUR FACE, PLEASE GO OUTSIDE  AND REWASH YOUR HANDS.

12.  Please refrain from any bodily contact with Steven until he is released from the BMT unit.

13.  There are many other items listed inside the notebook, located outside Steven's room, so please take the time to read and understand before entering Steven's room.


These rules may seem extreme, but during the coming months failure to comply with even one of these rules could endanger Steven's bone marrow transplant success or even Steven's life.


If you have any questions please email John at:
reddlegg@bellsouth.net
jlester@hotmail.com

  

169,800

 

 

X

Tuesday, December 11, 2001

No Doctor Visit Yay!!!

 

 

 

 

Monday, December 10, 2001

Scheduled CBC at Montgomery Cancer Clinic

146,000

 

X

 

Sunday, December 9, 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, December 8, 2001

No Doctor Visit Yay!!!

 

 

 

 

Friday, December 7, 2001

Steven had Surgery this morning for catheter placement.  The surgery went well.  Doctor Lopez called Steven at home and said that he needed to start back taking 300 mg of Gleevec each day until he returns to UAB.  The bone marrow biopsy revealed that Steven still had leukemia blasts, 15%.

We were able to return home today.

 

 

 

X

Thursday, December 6, 2001

No Doctor Visit Yay!!!  Steven was able to go to the Galleria Mall and out walked us!

 

 

 

X

Wednesday, December 5, 2001

Steven had test doses of the chemo that he will be given upon his return to UAB.  These test doses are used to help individualize Steven's doses of Chemotherapy.  Blood was drawn from him every hour to measure the amounts of chemo.

 

 

 

X

Tuesday, December 4, 2001

Steven had CBC's drawn and also had a bone marrow biopsy performed today.  They drilled into his hip bone to extract his bone marrow for testing.

We all went out for dinner at Chili's to celebrate John's birthday.  We had a great time.  Then we went to the Old Navy Store where Steven found some cool hats, robe, and shirts.

 

 

 

X

Link to 2001 Pre-UAB

 

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