THE JOURNEY HOME

By:  David Ellis

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DAVE'S PROGRESS REPORTS
APRIL - JUNE 2003
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Dave's daily progress is reported below for the April - June 2003 period.

Update Apr. 1st, 2003
Written Apr. 1st, 2003
Over the last week and a bit, several people dropped in to visit and that was great. I also was able to get out and enjoy the wonderful weather we were having. It is a very different feeling when you have been cooped up for over 150 days and then venture out. WoW! It was great! I look forward to much more of this, as the better weather continues and look forward to seeing many more of you……
SARS is now effecting patients in the area of PMH that I visit. They are only seeing the critical patients at this time. Apparently that’s me! This is of course due to the GVHD on my liver and general body. This must be controlled or can result in total destruction of bone marrow transplant. The good side to this is my hemoglobin and platelets did bounce back nicely this week even with the on-going GVHD. An encouraging sign. My liver remains under stress. Due to the continued concern of GVHD my appointments have changed from every 2 weeks, back to weekly.
Juicing:
I continue to hone in on the balance that I need for juicing to help my body maintain its proper level of various minerals / electrolytes. Since these are tested weekly, I can truly get a good picture of the actual effect the juicing is having. This way I can take Magnesium, Calcium, etc naturally and not take so many pills (juicing is known to be better then even natural vitamins etc.) For example the level of Mag. (4500 mgs / day. 9 pills / day) I am required to take is very hard on the bowels. If taken from natural sources (juiced veggies) it is less aggressive on my body. This is taken is such mega doses due to the fact that the Cyclosporin eats Mag. From your body. Juicing is working!
Bone Marrow Biopsy Date : On April 1st, 2003 – NOT performed due to SARS
Highlights:
Prednisone not dropped as GVHD seems to want to continue it aggressive assault on my Liver and body. If it does not subside next week, prednisone will probably be increased!
The is serious and the DR’s are taking this very serious.
Appointments schedule: Changed back to weekly
Weight : up another 1 lb. In one week. Yikes! The heaviest I have ever been is 176lbs. (80.0 kgs.). That was during my "heavy"/"big" stage, 20years ago. I really don’t want to go back there. I must say, it is fun eating 5 meals a day…….
More Nicknames :
Santa Claus, Hey Hey Hey!, Suma, slim, potato pot, chubby , pork jelly belly, b ball face, puffy
 * = Area of concern ( at a glance for Rosalind)
** = Serious area of concern
GVHD : Slight increase in aggression, effecting liver and entire body
CMV: Neg. (explanation in next update – I think I said this before)
Aches/Pains: Liver, Spleen, Feet
Hemoglobin: * 122 (116 / Norm 140-180) Bounced right back!
Platelets: * 79 (65 / Norm 180 - 300) Bounced right back!
White cells: 6.3 (5.3 / Norm 4.0 – 11.0)
Neutraphils: 5.6 (4.4 / Norm 2.5 – 7.5 )
Spleen: several times normal (it was 12x normal) Shrinking very quickly
Liver: ** Having increased GVHD attack (normal size)
Liver Enzymes: ** Normal ALP/47 ; AST/23 ; ALT/89 – little elevated( 50 / 20 / 87)
Total Bilirubin: 18 (20 / norm <22)
Kidney Creatinine: 101 Normal ( 101 / Norm <107) 100 is correct for me
Weight: 167lbs. / 75.1kgs. (166lbs. / 75.9kgs.)
Energy level: Lots of rest/sleep – restless from on-going prednisone……
Rest schedule: 7:30 PM – 8:30 AM // 2:00 PM - 4:00 PM ~ 14 – 16 hours/day
Visitation ban: Restriction lifted
Diet : Restrictions lifted
House arrest: Restriction lifted
Blood pressure: 124 / 74 (120 / 60)
Cyclosporin : * 200 mgs./ 2 daily (DR’s want this decreased; when off Prednisone
Prednisone: * 40 ( 40mgs. ) No change due to GVHD
Magnesium: 0.83 Normal @ (0.83)
Calcium: 2.33 Normal @ (2.33)
Potassium: 4.0 Normal @ (4.0)
Juicing: 3 times / day mostly carrots, spinach, beets, celery and cucumber
Fluid Intake: 6 l/day water (250mls every hour; 24hrs./day)
Hair growth: New Pictures as of Mar. 24th
Personal Overview: Last week was going to be a good one…..IT WAS!
This week will be even better. I look forward to the GVHD settling down, liver improving and prednisone being reduced……I await His touch!

Update Apr. 8T, 2003
Written Apr. 13T, 2003
WoW, if Wal-mart introduced the "greeter" to us; then the hospital has taken it to the next level. When you try to enter PMH you are first greeted by a wall of at least 10 people. These people ensure you wear a mask and hands wash your hands before entering the hospital. You then walk through the doors and another person greets you with a thermometer they want to stick in your ear and take your temperature. You are then directed over to a row of tables and chairs to fill out a questionnaire. The questionnaire is then check and if filled out completely and nothing noted related to SARS, you are permitted to the 4th and finally stop. Getting through the last step is confirming you have done the first 3 steps. There are no less then 25 "greeters." It makes one feel so, so……..what do you think?
Well I ventured out to the first crowd last Sunday; Church. It was overwhelming! When you have not been out other than going to the hospital at 6:00AM for over 180 days just going out is an adventure. But a crowd, Wow! As I entered and took a seat my body began to tremble. It was an experience I will not soon forget. It is so hard to describe. Don’t misunderstand me, it was not a negative situation, but rather a very positive one from many aspects. It is just so overwhelming to the senses that it is very difficult for your body and mind to adjust to all that is going on. I did one thing I should not of. I felt like I had had enough around the 1 hr. and 20min. mark and needed to leave and lie down. I didn’t. That was a mistake. When we did head home I was totally frazzled. I found it hard to rest, difficult to calm myself. All my sensors seemed to be turned on and there was no way to turn them down or off. I headed for a rest and tried for 2 hours to calm myself and stop the trembling. Finally after just over 2 hours I started to return to a settled state. Next time when it is time to go, I will simply go. This would have made all the difference. So we live, we experience and we move on. It was still wonderful to be back in Church. It has simply been to long.
CMV
This stands for Cytomegalovirus.
This is a virus that effects between 50% and 85% of the adult population in North America by age 40. In most healthy people a CMV infection is not a serious concern.
It is much more of a concern for young babies and immunesuppressed (that’s me) individuals. It can, if not diagnosed destroy the bmt/stem cell transplant. So it is a large concern and is watched very carefully by all concerned. Weekly blood test for detection, although that in itself, is not conclusive. If it shows itself, I must immediately be started on corrective measures. For immunsurpressed patients they are given the Ganciclovir treatment. We are hooked up to a 24 hour pump with meds. that we carry around with us and it feds directly into you blood stream. This last 24/7 until the virus is arrested. Time line various from person to person – approx. 1 – 4 weeks. Not pleasant carrying around a pumped and having to be hooked up to it 24/7, but the consequences are less then favourable. Destruction of transplant.
This virus is a member of the herpesvirus group which includes the viruses mononucleosis, Herpes 1 and 2 and chicken pokes.
I received this from my donor upon transplant.
Bone Marrow Biopsy: April 8th, 2003 – Results in 2 weeks
Rest schedule: 2:00 PM - 4:00 PM // 8:00 PM – 2:00AM // 5:00 AM - 7:00AM
 * = Area of concern ( at a glance for Rosalie)
** = Serious area of concern
GVHD : * Decreasing
CMV: * Neg. (explanation of what this is above)
Hemoglobin: * 122 (122 / Norm 140-180) Bounced right back!
Platelets: * 76 (79 / Norm 180 - 300) Bounced right back!
White cells: * 3.6 (6.3 / Norm 4.0 – 11.0)
Neutraphils: 2.8 (5.6 / Norm 2.5 – 7.5 )
Spleen: remains 3x normal (it was 12x normal)
Liver: ** slowly settling back to normal
Liver Enzymes: ** Normal ALP/37 ; AST/15 ; ALT/51 elevated ( 47 / 23 / 89)
Total Bilirubin: 22 (18 / norm <22)
Kidney Creatinine: 106 Normal ( 101 / Norm <107) 100 is good for me
Weight: * 169lbs. / 76.8kgs. (167lbs. / 75.9kgs.)
Energy level: restless from prednisone……
Blood pressure: ??? / ?? (124 / 74)
Cyclosporin : * 200 mgs./ 2 daily
Prednisone: * 30 ( 40mgs. ) decrease of 10mgs.
Magnesium: 0.75 (0.78) - reduced Mag. Pills by 33% due to juicing!
Calcium: 2.36 (2.27)
Potassium: 4.0 (3.9) - increased Potassium by juicing!
Juicing: 3 times / day mostly carrots, spinach, beets, celery and cucumber
Fluid Intake/day: 4.8litres water (200mls /hour) +750mls. Fresh juice + Misc. = ~ 6 l
Personal Overview: A good week overall. Looking forward to getting out more and building up my strength and endurance. Pool opening in less then 2 weeks!!!!

Update Apr. 24T, 2003
Written May 2T, 2003
Bone Marrow Biopsy: April 8th, 2003 – Results!!!!
The report came back and said "no evidence of Myelofibrosis.". This is amazing and incredible. It is certainly not what we expected from this report. We did and do believe I am cured from this disease, however, we thought the report would tell us how much the transplant has taken. We were expecting something from the report comment along the lines of transplant taken 75% or some other such number. We were awestruck when we read biopsy and aspirate comment "no evidence of Myelofibrosis." It throw us into shock and we became non functional for a few days.
Since I didn’t get a chance to speak to the DR about the results, I will say nothing further on this subject until I meet with the DR. Tues May 6, 2003. I sure this will be an eventful discussion and I look forward to this discussion with great anticipation.
Stay tuned!
Kind of numb from the news so that is it for this week blood results below!
* = Area of concern ( at a glance for Rosalie)
** = Serious area of concern
GVHD : * I have been and continue to be considered chronic GVHD
CMV: * Neg.
Hemoglobin: * 126 (122 / Norm 140-180) Bounced right back!
Platelets: * 85 (76 / Norm 180 - 300) Bounced right back!
White cells: * 4.5 (3.6 / Norm 4.0 – 11.0)
Neutraphils: 3.7 (2.8 / Norm 2.5 – 7.5 )
Spleen: 2 - 3x normal (it was 12x normal)
Liver: ** slowly settling back to normal
Liver Enzymes: ** Normal ALP/46 ; AST/28 ; ALT/63 elevated ( 37 / 15 / 51)
Total Bilirubin: 23 (22 / norm <22)
Kidney Creatinine:* 116 Normal ( 106 / Norm <107) 100 is good for me
Weight: * 175lbs. / 79.5kgs. (169lbs. / 76.8kgs.) Now losing weight – for sure!
Energy level: restless from prednisone……
Blood pressure: 145 / 72 (??? / ??)
Cyclosporin : * 200 mgs./ 2 daily
Prednisone: * 20 ( 25mgs. ) decrease
Magnesium: 0.82 (0.75) - reduced Mag. Pills another 17% due to juicing!
Calcium: 2.49 (2.36) - reduced Calcium pills by 50% due to juicing
Potassium: 4.0 (4.0) - increased Potassium by juicing!
Juicing: 3 times / day mostly carrots, spinach, beets, celery and cucumber
Fluid Intake/day: 4.8litres water (200mls /hour) +750mls. Veggie juice + Misc. = ~ 6 l
Personal Overview: Pool open. Good weather coming. Looking to a much better summer than last year! PTL, Dave

Update Apr. 25th, 2003
Hi All,I just received my results from my bone marrow biopsy and aspirate.
Comment was as follows:
There is no evidence of Myelofibrosis............PTL!
The DR's did comment that it will be at least another 1.5 years before I am fully recovered and off meds.
Dave

Update May 5th and 9th, 2003
Written May 10T, 2003
Folks you are going to be witness to exactly what I have been saying over and over. The enemy is sneaky, weak and afraid. He attacks at our venerable times and constantly changes his direction of attack – but attack he does. This example of what I am now experiencing is a clear example of how he works and how he attempts to instill fear in us. We are told to "fear not", but how many really do and I mean really do….. I do not fear, I have learned from the Good Book the enemies ways and wear the coat of Armour it provides for all that choose. It is often ( not always, but often) his attacks and our response to them that cause most of the illness/strife/etc. in our lives and in the world. If you want proof, think back to any incident or conflict that you had with yourself (come on, you know that little voice in your head playing games with you, that is the enemy!) or others and analyze what happened. I believe you will see that it was started or propagated by the enemy and at heart, it was not nearly as large of a problem or concern as thought of at the time. He is tricky, realize this and don’t let him control you. You have the choice. I refuse to allow him this power over me and rebuke him as required. Let’s look at this current attack on me to analyze exactly what he is attempting!!
The real story if you will………..
On Monday May 5th the attack was started with my Hemoglobin, platelets dropping and my Total Billirubin doubling!! The DR. became very alarmed. See the enemy is having a lot of trouble instilling fear into me, sooo, now he attacks the DR’s!! Bring it on over here sucker, that’s what I say to him, because I will rebuke you and send you and your strongmen to that dry oasis you can not bare!! The DR’s were concerned I was fracturing (in short destroying my own blood cells), not producing blood cells or having bone marrow failure. All very serious situation at the best of times but in my state deadly. I had to go back on Friday for follow-up to see what had changed and if things became worse, as the DR suspected it would. Stay calm Davey boy, Stay calm!!
My Hemoglobin, platelets and now white cells dropped further. Total Billirubin remained doubled and now my LD jumped large. Indeed the attach is on. The DR is now forced to put my Prednisone up to 50% higher than my "normal" maximum. Just as I was starting to lose weight – Darn! He has also suggested I may need a blood transfusion next week as well. It has been months – what an attach. The DR’s are very very concerned with this turn in events. They say this must be nip and nip quickly or devastating long term events could be jeopardized due short term catastrophic events.
Another attempt to instill fear. Wow, the enemy has tried through the DR’s and their observation and comments to bring on the fear in me, several times in this most recent event. I have the power, as we all do, to say NO WAY, I do not buy into it.
So lets look at this from my prospective. The enemy is smart I give him that, however, not smart enough for those that have read about how he works in the Book of Life. He has not been able to instill that fear he likes to instill in all of us so he is attacking me indirectly by instilling fear in those around me. Even in those that are by many standards in our society considered, learned. He knows I can not control the DR’s fear or concern. But folks; here is the kicker, I can still, will and do control my own emotion and reaction to fear, as all of us can, in all situations. (Don’t let him get to you – rebuke, resist and conquer! It will take practice and there will be times when you are temporarily fooled, but make no mistake, if you start to realize these things I say, you will be victorious!). That will make the difference, all the difference from Life and Death. Make no mistake, I am in a life and death struggle with this enemy and I rebuke him and refuse to allow him and his cheap games of trickery to beat me. Just knowing and saying this aloud instills fear in him which he and I know he can not defeat.
I am victorious over him yet again!! I stand in Faith!
Stay tuned for my improving results as proof of what I say…….this story is not over yet!!
Based on some suggestion from some of you, I have reduced the number of technical results below to the ones that are of a more critical nature. The ones that are now omitted are considered under control and you have seen how we accomplished that (i.e. juicing etc.).
Going forward we will add and delete parameters as necessary.
I trust you will find it a cleaner approach.
* = Area of concern ** = Serious area of concern
GVHD : ** I have been and continue to be considered chronic GVHD
CMV: * Neg.
Hemoglobin: * 99 (126 / Norm 140 - 180) Bounced right back!
Platelets: * 68 (85 / Norm 180 - 300) Bounced right back!
White cells: * 3.9 (4.5 / Norm 4.0 – 11.0)
Neutraphils: 3.4 (3.7 / Norm 2.5 – 7.5 )
Liver Enzymes: ** Normal ALP/40 ; AST/24 ; ALT/30 ( 46 / 28 / 63)
Total Bilirubin: ** 50 (23 / norm <22)
Weight: * 171lbs. / 77.8kgs. (175lbs. / 79.5kgs.)
Blood pressure: * 175 / 85 (145 / 72) - HIGH
Cyclosporin : * 200 mgs./ 2 daily
Prednisone: * 100mgs. ( 20mgs. ) significant increase !!
Personal Overview: At the moment road is filled with speed bumps and pot holes.
The high level of prednisone will have some ill effects. I am not looking forward to this necessary increase, but my body needs the extra support. If not the alternative is less then grime. I do remain optimistic! Much better days coming…..PTL, Dave

Update May 15th, 2003
Written May 16T, 2003
A thought:
""We are given the day as the "gift", what did you make of it…""
This will be short, as I am tired (not to mention grumpy!) and my blood has dropped further (as you will read it is not all bad). I do feel beaten and bruised from this last round and need to get rest and recover time – recover we will!
I wrote this in my last update and lets look at it again. This is the accountability part.
"Stay tuned for my improving results as proof of what I say…….this story is not over yet!!"
Well, what happened and how did it work out, as the enemy desired or not……..
Yes my hemoglobin dropped about the same amount as last time, however, and this is key; it dropped the same amount, but it was over a 7 day time frame not 3 days as last result. That means the rate of decent is reduced by more then half. We can also look at Total Billirubin and see that it dropped from 50 to 41 (almost 24% drop). The other parameters remained relatively stable or improved. Sticking it to the enemy…….
So the enemy tired its deception; more importantly, who was correct?
Now having said that and seeing the results as positive, there are reasons for continued concern.
The items they checked on me last week (ie Coombs test, icteric, hemolytic, haptoglobin)
are all very serious possible causes of my elevated results. These checks range from checking for jaundice; to verifying if my body is destroying the various new cells it is also producing. A positive result for some of these tests is death in a couple of weeks or less.
Many of you remain confused because I reported my disease Myelofibrosis is gone; how can this be. Keep in mind, the measures taken to rid my body of Myelofibrosis have been extremely aggressive and tough on my organs and body as a whole. With special attention to the Liver and Skin. I am now in what I could call phase 4 of recover which is the acceptance of the donors immune system, as mine. With a 5 out of 6 match (not 6 out of 6) this is causing significant problems and will likely for many months and possible years to come. So we are out of one area of danger and into another.
We continue to believe that total and complete healing is not only possible, but right around the corner. We remain unstirred.
* Concern
** Very Concerned
GVHD : ** considered chronic GVHD – Not good
CMV: * Neg.
Hemoglobin: * 84 (99 / Norm 140 - 180)
Platelets: * 64 (85 / Norm 180 - 300)
White cells: * 3.9 (4.5 / Norm 4.0 – 11.0)
Neutraphils: 3.4 (3.7 / Norm 2.5 – 7.5 )
Liver Enzymes: ** ALP/37 ; AST/19 ; ALT/39 ( 37 / 19 / 39)
Total Bilirubin: ** 41 (50 / norm <22)
Weight: * 170lbs. / 77.3kgs. (171lbs. / 77.8kgs.)
Blood pressure: * ??? / ?? (175 / 85 ) -
Cyclosporin : * 200 mgs./ 2 daily
Prednisone: * 100mgs. ( 100mgs. )
Personal Overview: This has been a very tough couple of weeks. I continue to grow weak and the normal aches and pains that I get daily, are taking a toll. I/We do remain optimistic!

Update May 20T, 2003
Written May 23, 2003
Well the war on my body continues. The DR’s are becoming more concerned as my blood did in fact drop again (decent did not reduce as last time). I required a red blood cell (pack cell) transfusion.
I have been feeling absolutely exhausted and battered. This has been one of the toughest periods throughout this 3 year ordeal. The DR’s have said again they are not sure what is causing my body to greatly reduce blood production. They have indicated that on occasion they have found that Cyclosporin (anti-rejection drug) at times in a few people will cause this to happen. They have therefore reduced my med. by half to 100mgs. by Saturday. That is quick and an aggressive move, however, required.
Young Dave has been fighting a sinus infection: streep throat and several kids from his school have been sick as well; for the last 2-3 weeks.
I have had a weak cough and believe I am fighting a virus or bacterial infection. The DR’s have check me out, but have found nothing wrong with me. The cough is now intensifying and I will again mention my it to them, Tues. We believe that this virus/bacteria we think I am fighting and the high Cyclosporin is causing my low blood production and will start to return as soon as I get over these items. In the meantime, I continue to be roughed up and feel brutal. I have cramping in hands and feet, aches on the bottom of my feet that incapacitate me. I also had a head ache (which I rarely get) for 4 days straight. For 18 hours I had such pain in my left leg I could not walk. My breathing is also very laboured and takes a lot of work to ensure I get a sufficient amount of oxygen.
Dave have had rough weeks as well, we me being roughed up so much. It has not helped that young Dave has a sinus infection and a terrible chronic cough at this time.
Emmy’s mother being diagnosed with Ovarian cancer Sept. 5th, 2002 has finished her medical protocol and recently received from the DR. a call to say she is in remission – no cancer present.
Emmy, however, has been going through various tests to confirm that she does not have ovarian cancer. This is protocol when a mother is diagnosed with ovarian cancer. Emmy is a trooper and continues to maintain her high spirits. Go Girl!!
We really could use a break; we are growing more and more fatigued.
That is it for now, time for a rest for all of us – we need it!
PTL……..Dave
A smile to a friend, is like sunshine from heaven………!

Update May 27T, 2003
Written May 30th, 2003
A thought:
We have many rooms in our home, all must be in balance for true prosperity!
It seems things started out well enough early on in this Bone marrow transplant, however, it seems to be turning to the downside for a while.
Dave’s Current Status:
Myelofibrosis : Is considered gone
Graft vs. Host Disease: Chronic / considered critical (Liver and skin attacked)
Hemolytic : My body is destroying premature red blood cells – No cure
Billirubin : I am expelling Billirubin through urine
Jaundice : Liver is under stress
Transfusion : Having to have transfusion’s again
Hemoglobin : Running at 50% of normal
Prednisone : High dose to try and help my body produce all it needs
Being on high doses of prednisone and low Hemoglobin is very precarious; the prednisone gives energy and need to get active and be busy, busy. This works directly inversely to the low hemoglobin which says rest, take it easy your body can not perform at this time. We are managing it. Emmy and Dave are great. I did completely lose it on Wed. the 28th. It was not good.
Apologized to everyone the next day.
The water is very rough and concern is at an all time high. We do remain unstirred and look to better days ahead.
* Concern ** Very Concerned
Hemolizing: ** considered very critical (destroying my own red blood cells)
GVHD : ** considered chronic GVHD – Not good
Hemoglobin: * 99 (77 / Norm 140 - 180) Transfusion May 20th
Platelets: * 48 (49 / Norm 180 - 300)
White cells: * 3.9 (4.8 / Norm 4.0 – 11.0)
Neutraphils: 3.5 (4.6 / Norm 2.5 – 7.5 )
Liver Enzymes: ** ALP/40 ; AST/18 ; ALT/54 ( 36 / 19 / 44)
Total Bilirubin: ** 29 (36 / norm <22)
Weight: * 169lbs. / 77.0kgs. (170lbs. / 77.3kgs.)
Cyclosporin : * 50mgs./ 2 daily (reduced aggressively due to hemolysising)
Prednisone: * 100mgs. ( 100mgs. )
Personal Overview: A tougher week again. I/We do remain optimistic!
PTL, Dave

Update June 3T, 2003
Written June 3-6, 2003
A thought:
In helping others unconditionally , we help ourselves; for that what we give unconditionally, we get back in multiplies!
A quick disclaimer for all the typo, spelling and grammatical errors of late. I simply had enough energy to get my thoughts down and that’s was it. I am now focusing on improving this effective immediately. It will do me a lot of good to force myself to focus and concentrate on this. My mind has been worked over lately and needs some confidence building. Good time to start.
In the last 6-8 weeks I have felt like I have been pulled through the eye of a needle. It felt like my body was being torture from all avenues. Then with Emmy going for her test for Ovarian cancer and Young Dave (Bubba) fighting a sinus infection and cold it has really taken us all down several pegs. We are all on the mend now! Emmy’s tests all came back negative and Bubba is just about over his battles. I am also starting to feel a little more with it. I am working hard to get this mind and body of mind back to optimum performance. I have been doing word puzzles (the easiest I could find) to force my mind to think, focus and concentrate. It is very hard with all the meds I take. I am also forcing myself to do small jobs around the house that require some planning etc. It takes me a long time just to do small tasks but I am improving. It has been hard being out of breath (due to low hemoglobin) and having to execute these tasks that require thought and planning. Some of these tasks require power tools; a dangerous proposition at the best of times….Ha! Ha! An attempt at humor, I must be feeling better. Emmy helps a lot in these situations. Emmy is always with me during these times as I require constant supervision with the lack of Hemoglobin. Emmy patiently lets me work out the solution and try it; ~2/3rds of the time it doesn’t work out. Emmy then suggest the method that will work and I follow her idea and presto, together we have done another home maintenance job and we both feel good. What a TEAM! What a Woman!!
The DR. says once again I have turn the corner on death. My body is once again starting to produce blood and stop creating anti-bodies to destroy premature blood cells (corpuscles). The DR has now taken me off Cyclosporin (anti-rejection med.). Some people after being on the Cyclosporin for a period for unknown reason’s, start to produce anti-bodies that destroy immature red blood vessels. The DR now believe that the Cyclosporin along with the virus or bacteria my body was fighting may have caused this whole issue. They do say there is no cure and it will be something that can return at anytime for a variety of reason’s; virus, bacteria, cold, run down, some one else with a cold, pretty much anything that could weaken my system and prudence will be necessary all the time!
Dave’s Current Status:
Myelofibrosis : Is considered gone
Graft vs. Host Disease: Chronic / considered critical (Liver and skin attacked)
Hemolytic : Greatly reduced
Billirubin : Greatly reduced
Jaundice : Almost back to normal
Transfusion : No further transfusion’s
Hemoglobin : Actually went up minimally over the last week
Prednisone : Reduced to 75mgs. (from 100mgs.)
Emmy Ovarian cancer tests: Negative
Young Dave sinus infection and cold: Gone - just some allergies now
* Concern ** Very Concerned
Hemolizing: ** Significantly reduced
GVHD : ** Chronic GVHD – Not good
Hemoglobin: *103 (99 / Norm 140 - 180) Transfusion May 20th
Platelets: * 64 (48 / Norm 180 - 300)
White cells: * 3.8 (3.9 / Norm 4.0 – 11.0)
Neutraphils: 3.5 (3.5 / Norm 2.5 – 7.5 )
Liver Enzymes: ** ALP/39 ; AST/20 ; ALT/52 ( 40 / 18 / 54)
Total Bilirubin: ** 25 (29 / norm <22)
Cyclosporin : Stopped due to hemolysising
Prednisone: * 75mgs. ( 100mgs. )
Personal Overview: The last 6 days I have been improving and feel a sense of relief that, that battle is subsiding. My mind is now clearing. Being off the Cyclosporin is really helping my mind and body clear up. I feel and think much clearer!!! This is very exciting, very.
PTL, Dave

Update June 8T, 2003
Written June 8, 2003
Just Don’t Get It:
I tell everyone and I tell everyone however it seems people listen, unfortunately they apparently don’t hear. I have even made more than one comment about it in my updates.
I even went into more detail in FAQ. People even ask and I explain it to them and still it happens.
Then when it happens, they frown, get agitated, are physically upset, sometimes even comment about it (I of course re explain the explained, etc…) and they look at me like I am from another planet. What do I have to do to get through to some. Often these are people that say they understand what I am going through and yet have never been through anything remotely similar themselves. I can tell you there are times when I don’t understand what I am going through, so how do these others? We as people do like to fool ourselves.
Oh what am I talking about you ask. It is an action that is so positive in the correct situation but in very simple terms has the potential to cause my death. If I have to give proof yet again I would say this; because Bubba (young Dave) had a sinus infection, and the combination with the Cyclosporin (anti-rejection drug) caused me to start to Hemolysis (create anti-bodies that destroy premature red corpuscles). SO what is it you ask yet again…….It is the passing of a virus/bacteria/cold or any kind of bug to me. Realize I may look fine in your estimation; I am NOT, Yet…….I have no immune system to fight off this kind of attack…….So Please, NO HUGS!!
A quick disclaimer for all the typo, spelling and grammatical errors of late. I simply had enough energy to get my thoughts down and that was it. I am now focusing on improving this effective immediately. It will do me a lot of good to force myself to focus and concentrate on this. My mind has been worked over lately and needs some confidence building. Good time to start.
I must tell you how the last couple of days have gone. It is just too remarkable to miss.
I have now been off the Cyclosporin completely since the 4th., that’s 5 days. What a difference in my mind. It is clearing up very quickly. I didn’t know just how much of a fog I was really in. Wow, was I messed up from that med. My vision is clearing ( the Prednisone still effects my eyes and many other parts of my body), my feet don’t ache so bad I can’t walk on them, my need for water has dropped to 3.6 l / day (this my body can process with ease), my legs don’t sieze up and prevent me from walking, the Cyclosporin shake on my hands and general body tremors are reducing. I could go on but I think you get the idea. The most significant side effect that is reducing is the mind numb never never land I was in. It is so great to feel human for the first time in about a year (perhaps longer). Wow, what a change and so quick, so very quick with the removal of one med!!! Hallelujah!
The Best activity I did this weekend; I took shots with Bubba on his brand new basketball net. This is one of the very few things, I as his Dad, have been able to do with him in the last 3 years. Count them, 3 years he has missed out on playing catch, football, hockey (don’t forget hockey), and all types of sports. I have just not been physically or mentally able. Friends have been great and included Bubba in various sporting events that they were attending with their family, children or friends. I will always be thankful.
But let's face it, that is not near the same as Dad and son going out together during those very important years 7 – 10. This time is for ever gone……but the good news…….
It was awesome. Me and my 9 year old son playing B Ball.
I think that says it all as to how my health has again swung to the positive. We look forward to many more days, weeks, months, years and decades of Father and Son time!
Dave makes a prediction:
On my next appointment June 10th, 2003 I believe the following will be the out come:
Hemolytic: subsided
Total Billirubin: 22
Jaundice: normal for all intense and purpose
Transfusion: not required
Hemoglobin: 115-117
Platelets: 75
Prednisone: reduced by 15mgs. To 60 mgs./day
Personal Overview: I played hoop with my son on Sunday; that says it ALL!!
PTL……Dave

Update June 10, 2003
Written June 10, 2003
A thought:
Pain is sickness leaving the body!
Well things worked out just as I predicted. Please see below.
Dave makes a prediction:
On my next appointment June 10th, 2003 I believe the following will be the out come:
Hemolytic: subsided
Total Billirubin: 22
Jaundice: normal for all intense and purpose
Transfusion: not required
Hemoglobin: 115-117
Platelets: 75
Prednisone: reduced by 15mgs. To 60 mgs./day
Dave’s Actual Status June 10, 2003:
Myelofibrosis : Is considered gone
Graft vs. Host Disease: Chronic / considered critical (Liver and skin attacked)
Hemolytic : Subsided
Billirubin : 20
Jaundice : Normal
Transfusion : Not required
Hemoglobin : 116
Platelets: 76
Prednisone : Reduced to 60mgs. (from 75mgs.)
The DR’s are relieved I have bounced back from a very precarious situation. My spleen which had grown during the last downturn has shrunk back to a size smaller than it was before the attack. It is still not "normal" but getting closer ever day. My one liver result is still remaining slightly elevated, however they still want to start to get me off the Prednisone so they have reduced it by 15mgs. to 60mgs./day.
I am not personally a big fan of over weight and I have not liked being overweight the last few months. Even though I accept that when on Prednisone hunger and the desire to eat is very much out of my control. I do believe I can do something to stay some of the weight gain and to shed a few pounds. The last week I have made an effort to watch my eating habits and desires and curtail them where required. The results are that I am now down to 165lbs., which is a very respectable and I am pleased. I could tell my weight was down before having my weight taken, as daily activities that I do, have become easier and yet it is only about an 8lb. drop. I can’t believe the difference it makes! Look to lose 5lbs. in next 2 weeks, before my next appointment; June 24, 2003.
I am back to check-ups ever 2 weeks. Wow, things sure change quickly!
Personal Overview: I feel very good, although I still need a lot of sleep. I played hoop with my son on Sunday; that says it ALL!!
PTL……Dave

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