January 3, 2003 (Stacey, Erin, Keith and Uncle Dick)  11:55 P.M.
How quickly things change! We met with Dr. Schriber at 4:00 P.M. today to discuss the results of the MRI pictures taken yesterday, and his thoughts on further treatment for Mark. After careful examination of yesterday's slides and comparing them with slides taken at the previous MRI session on Dec. 18, Dr. Schriber and the team of neurologists determined that the new pictures showed significant improvement. This is a glimmer of hope that Mark needs.....Thank you Jesus!  The picture is still far from perfect. The MRI did show some blood not seen on earlier slides, but Dr. Schriber didn't seem too upset by this. He believes this can resolve itself in time. 

The new determination completely changes, at least for now, the treatment recommendation for Mark. Prior to viewing the MRI, Dr. Schriber expected it to look a lot worse based on Mark's clinical status (which has gotten worse over the last few weeks) and was prepared to tell us to stop any further treatment.  Typically one improves clinically before the improvement is evident on a MRI, so as you can imagine, today's findings were a surprise.  Dr. Schriber was careful to point out that we should not get overly excited by the new findings. He said that the MRI slides still look pretty bad. As he put it, the pictures went from "horrific to awful".  At this point, Dr. Schriber's recommendation is to continue with the same treatment and wait it out for a few weeks.

We're thankful that the Lord has given us gifted and skilled doctors and nurses (in our opinion, some of the best), and all of the other resources that have helped sustain Mark's life, but we are most thankful that the Lord is in control and our hope is ultimately in HIM.  Tonight we experienced an awesome time of prayer and singing in Mark's room, with 15 brothers and sisters in Christ, as we called upon the Lord to impart grace and mercy for Mark's physical healing.  "What is impossible with men is possible with God."  Luke 18:27
January 3, 2003(Keith) (3:30 PM)
I was planning on going to the office this sunny Friday morning in Phoenix. However, last night’s discussion with the doctors concerning Mark has prompted me to go to the hospital to think, and to write my very occasional update.

Last nights discussions (one between Dr. Bajo and Stacey, and a later discussion that all of us had with Dr. Applefeld) were particularly frank ones. The talks followed a hastily arranged MRI session to take more pictures to determine recent changes in the brain, and learn more about what is going on in Mark’s head. The results indicated further worsening of the lesions and inflammation without yielding new clues on the cause or treatment of the lesions. The new pictures, observations of Mark’s changed behavior, and the family’s questioning prompted the doctors to have the difficult consultations.

Over the last several months Mark’s condition has slowly deteriorated, with only occasional, heroic periods of recovery. A week ago a strong infection nearly overcame him. The doctors were prepared to pull out all the stops and perform the operations frequently seen in movies and on TV series. Inexplicably, without the drastic measures planned by the doctors, Mark overcame the high fever and infection. Outwardly, Mark’s neutropenic (blood composition) condition has improved the past few days. His bouts with fever have diminished, his blood counts have improved, and, thus, his ability to fight infection on his own. If we could go by the numbers that are reported daily Mark appears to be making progress. We wish it were so.

In reality, up to this moment, Mark’s brain disorder has gotten worse, despite the most aggressive treatment. His behavior has unequivocally changed for the worse with diminished response and more periods of sleep. Dr. Alvarnas, based on his observations of characteristics movements of Mark’s body, believes that his brain may be approaching, or may have become “locked-in.” This is a condition, as best I understand, where his brain can take in information signals, but cannot process or express them outwardly. The doctors, in unison, are no longer optimistic about Mark’s chances for recovery in the “whole body” sense that Mark would doubtless insist upon if he could be consulted.

The recommendation to the family by the doctors, at this point, is to begin serious thought about what we want to do and when. The doctors will do exactly as the family wishes. One option would be to continue to do what they have been doing. Another approach would be to back off on aggressive treatment and focus on the comfort care mode. In other words, if a major trauma should occur such as a blood clot, major infection or the like the doctors will not respond in a battle mode. Such an aggressive approach might keep Mark alive, but would surely damage his brain further. The question that must be pondered and answered by the family is, “How would Mark want to continue his life?”

The past two weeks have been difficult to endure. I suppose the telling day was the day before Christmas when the biopsy results came back inconclusive from a diagnosis standpoint. I remember all of us sitting at the “good news, bad news” meeting with Dr. Adoo to discuss the unofficial biopsy reports. It was good news hearing that lymphoma and fungal infection had been ruled out. We didn’t really discuss, in depth, the bad news that the doctors still couldn’t determine the problem with Mark. I recall when we walked out of the meeting thinking that we should be feeling good, that was not the reaction. We were all pretty quiet, pondering what we had just heard. It didn’t really occur to me, though maybe it did to the others, the significance of the “bad news” part of the consultation.

We have learned that doctors are, indeed, human beings. Though they are knowledgeable, they know what they “know.” To be effective, they need to “know” what it is they are treating. When they “know” they are tremendously confident and capable in their ability to treat a known illness. What doctors do not like is “not knowing.” We have felt, the past two weeks, the tremendous frustration of the doctors not knowing the cause of Mark’s condition. Expectedly, the talks with the doctors have taken on a different tone. Guarded realism, and statements about the magnitude of Mark’s overwhelming problems have replaced the earlier optimism. They have never, however, ceased to be anything but wonderfully caring of the patient, and especially his family.

The desperation of the past days will never overshadow the good things that have occurred. Mark has received overwhelming support, pouring of friendship and prayer from personal friends, relatives, and hundreds of cyber friends that have visited his website. His website continues to develop a following of fellow leukemia and BMT patients. There have been the light-hearted moments this week such as the visit by Mark’s buddy on the McPherson police force, Norm Hosterman. He walked over to a closed-eyed Mark and performed a non-stop monologue, in the fashion of Don Knotts TV character Barney Fife, about the operations of the “old department.” We heard all about local drug busts and the brave exploits of Magnum, Mark’s old dope-sniffing police dog that was passed down to Norm after Mark left the force. The topper story was Norm’s description of the battle to chase away a nuisance bat that had occupied a McPherson home. “Do you know how hard it is to shoot a bat flying in the living room with a shotgun?” A good question, we asked ourselves writhing in stitches in the hospital room. I guarantee that Mark’s eyes were wide open by the time Norm left the room. Truly one of the most hilarious moments I have seen in a hospital room visitation.

We are continuing to confer with the doctors as they assimilate the vast information that has been generated the past few days. They continue to look for signs of recovery. Focus is completely on the pictures of the brain. The brain is the thing they must ultimately understand. They feel they can handle just about everything else. We are scheduled to meet this afternoon, and probably again on Monday. We continue to pray for his recovery and comfort.

January 2, 2003(Linda) (4:45 PM)
There isn't anything different with Mark today. He is getting ready to go down for a MR Spectroscopy which is another type of Magnetic Resonance Imaging scan. I'm not sure what this will show but I am sure that we won't know anything until tomorrow.
January 1, 2003(Linda) 11:30 AM
Today is day 39 in ICU. Mark had a better day yesterday and has not been running a fever since the night before. He has moments when he is awake and responds but for the most part he is sleeping. There is no dramatic change from last week or from when he was first admitted. He continues to rely on the ventilator for most of his breathing, and there hasn't been an attempt to wean him from it for about five days now. The doctors continue to tell us that they just do not know what his chances for recovery are and that they are out of options. So, we continue to wait and watch Mark and hope that a miracle is granted to us.

December 30, 2002 (Stacey) 3:30 PM
Today is day 37 in ICU. The hospital called me at 2:45 this morning to tell me Mark's fever had spiked to 103.6, his blood pressure was falling, his heart was beating very rapidly, and his breathing was labored. I called Linda, and we both went up to the hospital. Dr. Bajo came in and said he felt that Mark needed some medication to put him to sleep because his body was working too hard. When Linda and I arrived Mark was breathing so hard and sweating all over as if he had just finished running a marathon. Around 4:45 he received the medication to make him sleep. The treatment apparently worked since Mark's heart rate is down, his blood pressure has come up, his breathing has slowed down and his fever is gone. Prior to this he had received two doses of tylenol to bring the fever down but it wasn't working. He has been sleeping since the medication was administered.

At this point, according to Dr. Bajo, Mark is septic. He is very suspectible to infections since his WBC is so low, and the doctors have re-adjusted his antibiotics. Unfortunately since Mark has been on antibiotics for such a prolonged time he may becoming resistant to some antibiotics. Right now it is still a waiting game. Please pray for a total healing of Mark, and wisdom for the doctors as they figure out a plan of treatment.
December 29, 2002 (Erin) 6:30 PM
Today is day 36 in ICU. Mark's fever spiked today to 101.6 (the highest it's been for awhile) and has now come down to 100.6. Steroids mask a fever, so his fever is most likely even higher. Since his temp has consistently been up, they have been taking blood cultures every day to test for infection. Although not confirmed, an infection is suspected in one of Mark's IV lines. To be safe, they removed his triple lumen catheter from his neck and placed 3 IVs in his left hand. (He has a fourth IV in his left bicep.) They started another antibiotic last night to treat another infection found in his lungs. He is having a reaction to it, which is causing a red rash on his face and torso. The doctors feel that it's more beneficial for Mark to receive the medicine, despite the rash. He also had what appeared to be a seizure this afternoon, so an EEG was performed to monitor his brain activity. The results showed no continuous seizure activity. It cannot be confirmed that Mark actually had a seizure and the cause of this episode is unknown. Since this episode, Mark has been asleep (except for a short period), and we have been unable to wake him up. We are hoping that this is just due to the Ativan (medication given to help stop seizures in this instance), which can make you very sleepy. Dr. Bajo said that we just have to wait the night out to see if there is any neurological change in Mark. Please continue to pray for Mark's complete healing and that the treatments he is receiving are effective. Please also pray for patience and strength for the whole family.
December 28, 2002 (Linda) 12:00 PM
Today is day 35 in ICU. Nothing has really changed, Mark's counts are starting to bottom out from the Cytoxan treatment that he received on Christmas Eve. He continues to run a fever but so far the cultures from two days ago have came back negative.
December 27, 2002 (Stacey) 12:00 PM
Mark has been running a low grade fever the last few days so blood cultures were drawn yesterday, and the preliminary results this morning are negative for an infection. There was some evidence of blood in his urine probably from the cytoxan but now only has a trace amount so that seems to be improving. Mark has also been receiving a drug called zofran, which is an anti-nausea medicine, since he is unable to tell us if he is nauseated from the cytoxan. Yesterday his hemoglobin dropped a gram so the doctor examined him to make sure he had no internal bleeding in which it doesn't appear to be the case. He may be hemolyzing (the hemoglobin separates from the red cells) which means he has the tendency to be anemic. The report is official from pathology (here at Good Sam) which says Mark has some type of inflammation in the brain with NO tumor or infection (PTL) but the cause is unknown. His biopsy is now at the City of Hope in L.A. for their pathologists to review it. The doctor said it wouldn't change their plan of treatment unless they would come up with something dramatically different in which he doesn't anticipate.Today Mark is having a typical day with periods of awake ness and sleepy ness. He is still able to squeeze your hand with his right hand but is unable to do anything on his left side. Please continue to pray for Mark as we wait to see if he improves. I want to thank everyone for your kindness through this very difficult time. God has shown me how giving and loving people can be...we have truly been blessed by SO many people! "give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18
December 26, 2002 (Linda) 12:00 PM
Today is day 33 in the ICU. There is really no change in Mark today. They tell us it will be 10 - 14 days before we can tell if the Cytoxan is helping.
December 25, 2002 (Linda) 10:00 AM
Today is day 32 in the ICU. It was 9 months ago today that Mark first entered the hospital to start treatment for his Bone Marrow Transplant which was 266 days ago. While Mark is asleep now, the nurse says that he did have his eyes open this morning and responded by squeezing her hand. There really isn't anything else to report.
December 24, 2002 (Stacey) 4:05 PM
The doctors said it could take 2 to 3 weeks to see any improvement in Mark from the cytoxan and hopefully weaning him off the steroids will increase his muscle strength with the help of PT and OT. We don't have a diagnosis but it appears to be some type of inflammation in the brain but what type of inflammation seems to be the question. It didn't appear to be vasculitis because lymphocytes were not present in the sample from the biopsy and lymphocytes are a characteristic of vasculitis. The doctors feel this is the best treatment for the inflammation so Mark will receive his cytoxan this afternoon. Some side effects of the cytoxan are decreased WBC and platelets, nausa/vomiting, hair loss, and hemorrhaging of the bladder. The doctors plan to do another MRI in 10 days. Please pray that Mark responds favorably to the treatment.
December 24, 2002 (Linda) 10:20 AM
From the preliminary reports of the biopsy, they still can not tell us what Mark has. However, they have been able to tell us what it isn't, and they feel sure it isn't lymphoma or infections. This leaves the initial diagnosis of some type of Vasculits. This is good news! We have been given a glimmer of hope on this Christmas Eve.
The plan is to take Mark completely off the Cellcept and wean him off the steroids along with a one time chemo treatment of Cytoxan. Stacey will give more details later as she is the detail person.
December 23, 2002 (Linda) 10:20 AM
Keith, Stacey and I are sitting in Mark's ICU room waiting to see if any of the biopsy reports come in today. Today is Mark's 30th day in ICU. There have been no changes in the last several days. He is resting well this morning and we haven't attempted to wake him. We will post an update as soon as we know anything concerning the biopsy.
December 21, 2002 (Keith) 6:30 PM
Mark had his second brain biopsy this morning, Saturday, December 21, 2002 at 11:00. The first biopsy a few weeks ago was inconclusive, and Dr. Lieberman, who performed the operation this morning, gave a good explanation of why the first tissue sample one yielded no results. I won’t, however, try to repeat his explanation because I didn’t understand it. What I did understand was the seriousness of this second biopsy operation after the doctor showed us Mark’s actual MRI pictures.
Dr. Lieberman took us to the computer that stored the file for Mark’s brain pictures so we could see for ourselves the extensive invasion of the brain lesions and swelling that had occurred in the past few weeks and days. If you have never seen MRI pictures of a brain before you would be absolutely amazed. The pictures are as clear as seeing an actual sliced cross-section of a brain. The picture can be sliced, diced and rotated in any way the doctor or surgeon wants to look at it. As Dr. Lieberman scrolled through the brain one could see white patches, and large, cloudy areas of swelling throughout the entire brain. A particularly affected area of the brain was the medulla, or brain stem. This part of the brain affects vital involuntary reflexes such as swallowing and muscle coordination. Swelling in this very-densely wired nerve zone was severe, and unable, in all doctors’ opinions, to withstand additional invasion without fatal consequences. After this “brain-storming” session it was very apparent that a biopsy would be necessary to determine the demon that is invading Mark’s brain, and so that immediate and accurate treatment could begin. Any delay beyond this point would surely be fatal.
The discussions a couple of days ago leading to the decision to do the biopsy did not fully prepare me for the gravity of the biopsy itself. I had heard that Mark’s platelet count was extremely important, as platelets control the clotting of blood. If bleeding were to occur during Mark’s operation platelets would be counted upon to stop any excess flow of blood that would otherwise damage the brain. I further learned that even with a good platelet count fatal bleeding could occur 20% of the time – not a great comfort level. There was some good news in that the MRI showed a developed spot in a relatively accessible area of the brain where they would take the biopsy sample.
Tami, Mark’s super-nurse, had made arrangements the day before to be with Mark and us all through the Saturday morning hours. She was in Mark’s room early, and made sure that everything was in readiness for Mark’s transport to MRI and, finally, the operating room. Linda and I arrived at about 8:00. Stacey, Erin and Ann came about ten minutes later. At 8:45 the nurses crew took Mark, his bed and life support system down to MRI. Needless to say, the morning hours passed with agonizing slowness and great tension for us all (Linda, Stacey and Ann, Erin and Dick Ensminger). Happily, at about 11:30 Tami Super-nurse came out smiling and told us the operation had gone well, and without bleeding or other trauma. Relief shook mightily through us all, producing more than a few tears.
In a few more moments Dr. Lieberman appeared in our midst to confirm what Tami had told us. The surgeon, also, told us that the danger of hemorrhaging was not past, but stressing that they would continue to supply Mark with the protective platelets throughout the day and evening. He also informed us that there was also the possibility that Mark might not awake from the operation (thankfully, he did about 45 minutes later). He said that the tissue they obtained during the biopsy was clearly abnormal, but that it was not so obvious as to make a diagnosis of the problem. He said that the tissue sample was a good one, and that we should get analytical results by Monday morning. At this point there aren’t too many possibilities, so we should get a diagnosis to point the way to treatment. Among the possibilities are lymphoma, vasculitis, viral or fungal infection. Opinions up to this point using only MRI pictures have been sharply divided among the many doctors looking at Mark’s case, though all diagnoses were based on MRI pictures, instrument readings and visual symptoms. A good biopsy analysis will, therefore, be needed to provide the important biochemistry for an accurate diagnosis.
The importance of this fact is illustrated by a conversation two days ago by one of Mark’s doctors, Dr. Applefeld. Incidently, Dr. Applefeld is one of the most sensitive, caring doctors any of us have ever met. He is also my personal candidate for the “King-of-Medical Analogy-Creators,” as he comes up with gem-after-gem of metaphorical illustrations to explain medical mysteries. In this case, the good doctor stood before a window in Mark’s 12th story, air-conditioned room overlooking the Phoenix area towards Camelback Mountain. The sky was clear, sunny and bright. Dr. Applefeld asked the analogous question, “What temperature do you think it is outside the window?” The answer, of course, was not possible for us to accurately determine. It could have been 90 degrees, or it could have been 40 degrees. But, without going outside to “feel” the temperature any answer would be just an educated guess. So it is with MRI pictures he further stated. To really know what is going on in Mark’s body it is necessary to have the chemical analysis as well as the pictures.
Since this morning’s operation we have been hanging around the hospital doing various things to pass the time away. Linda, Stacey, Erin and Ann have been chit-chatting, playing “inspirational” music, doing updates and generally giving Mark as much support as is possible in his post-operational dazed state. I was watching the KU-UCLA basketball game until CBS switched over to KY-Indiana. Tonight we will all probably go home, drained of energy as if we, and not UCLA, had been playing against Kansas in basketball. Tomorrow is another day and we will need all of our energy to get through what tomorrow will bring. Each phase of Mark’s Journey unfolds slowly, endlessly, as if peeling a massive artichoke without the rewarding pleasure of the flavorful artichoke. At this moment we have little idea of what to expect beyond Monday’s expected results. Once we have those results we hope we can point to some good news for Mark’s ultimate recovery from this terrible ordeal he and his family have been going through. We continue to try to keep our spirits up, and to pray for Mark’s recovery in our separate ways.
December 21, 2002 (Stacey) 4:30 PM
This morning when I walked into Mark's room Santa Claus had come early. The room was filled with presents for the girls from the nursing staff on the 12th floor. We have been so blessed with wonderful nurses that have become our 2nd family. God has put so many amazing and giving people in our lives, and we are so grateful. Look at all the new pictures from today. Please continue to pray that Mark's body is able to sustain a platelet count of 100,000 or greater, and the biopsy is able to give a diagnosis that is treatable.
December 21, 2002 (Linda) 2:00 PM
The biopsy went well and Mark is back in his room in ICU. He has opened his eyes and has been able to squeeze our hand when we ask him to. They had hoped to be able to visually make a determination of the biopsy...but, we weren't that lucky. Now, they hope to have some kind of idea by as early as Monday. The last platelet count was up over 100 and they hope to keep it up for the next few days. We can only pray that it is found to be something that is treatable, now.
December 20, 2002 (Stacey) 12:10 PM
They were able to get Mark's platelets up to 89,000 after 2 units of platelets and 2 units of blood. The Doc's out in L.A. agree that the biopsy is the next step, and Dr. Openshaw did say the MRI looked significantly worse because the old lesions were larger and several new lesions had appeared. The biopsy is scheduled for 9:00 tomorrow morning, but Mark will have to have another MRI and the halo apparatus put in place before the actual biopsy will be done. Please pray that Mark's body is able to obtain a platelet count of 100,000 and sustain it for two days so no hemorrhaging occurs during the brain biopsy or after. Also pray for the doctors doing the biopsy so the procedure is done safely as well as wisdom for the doctors reading the biopsy so an answer is revealed.
December 19, 2002 (Stacey) 3:55 PM
It looks like Mark will be getting the brain biopsy, Saturday morning at 7:30, assuming the doctors in L.A. agree and they can get his platelets close to 100,000. Mark is almost done getting his chemo (Rituxan) and is tolerating it well thus far. They said that if a reaction is going to occur it usually occurs within the first hour. Mark is waking up less frequently and there really isn't anything else to report. Please continue praying for Mark.
Shirley Cox, Linda's good friend for 30 years, flew in to see Mark today and will leave tomorrow.
December 18, 2002 (Stacey) 10:20 PM
The doctors feel the MRI appeared to look worse this afternoon compared to last weeks MRI although he did say he needed to compare apples to apples meaning MRI to MRI.  He does think by looking at it the lesions in the medulla and thalamus area are larger now.  Earlier I had mentioned it could be one of three things...vasculitis, lymphoma or an infection (which could be viral, bacterial, or fungal).  Vasculitis and lymphoma are treated with chemo and high dose steroids whereas an infection is treated totally different depending on the type of infection and may not be treatable at all.  Tomorrow Mark will be receiving a chemo drug called Rituxan which can treat vasculitis and lymphoma.  The reasoning is there is no harm in giving it to Mark if he doesn't have vasculitis or lymphoma so he will be given one dose intravenously tomorrow and then put on hold (normally it is given once a week but for now they are only committing to giving it to Mark one time until we have better answers).  This way if it is vasculitis or lymphoma we will get a jump start in treating it.  We still don't know what is going on in Mark's brain but Dr. Schriber said we are not treating it properly since it appears to be getting worse.  Dr. Schriber talked with the director of The City of Hope in L.A. and Dr. Openshaw today to discuss what was going on to get their thoughts on the situation.  Also a group of doctors locally who have been following Mark, including Dr. Schriber, all discussed Mark's MRI today but thus far don't have an answer.  The doctors are all going to sit down together again tomorrow and compare all of Mark's MRI's and also discuss the possibility of doing another brain biopsy.  Doing a brain biopsy in Mark's condition will be very risky so they will discuss the pros and cons to determine if it is worth it.  Tomorrow Mark will get pumped full of platelets to see how high they can get his platelet count up to (a desired level for the biopsy would be 100,000).  If they decide to do the biopsy it will most likely be done on Friday.  Please pray for a miracle.
December 18, 2002 (Stacey) 2:00 PM
Mark has shown no significant change. The team of doctors that are seeing Mark have moved his MRI up from tomorrow to today. At 3:00 a MRI, MRA (looks at the arteries) and a MRV(looks at the veins) will be performed to see if they can figure out what is going on in his brain. We learned that the CAT scan performed on Friday showed some edema (swelling) in the brain so hopefully the MRI will give us some answers regarding the cause of swelling and the lesions. The neurologist thought the lesions could be one of three things...vasculitis, lymphoma or an infection. The push to do the MRI so soon was due to the fact that Mark has gotten worse neurologically since Friday and his awakeness is so up and down. He continues to be extremely weak on the left side. The reports on the biopsy came back negative so it looks like he basically has ulcerations in his mouth.
December 17, 2002 (Linda) 2:50 PM
Mark is receiving his plasmapheresis treatment now. His temperature has been in the normal range and he has been waking up more frequently and responds to commands. We really won't know much about the lab work and biopsy results until tomorrow. Mark is definitely a little better today.
December 17, 2002 (Linda) 11:35 AM
Mark remained stable through out the night and is not running a fever this morning. He has opened his eyes a few times and interacted with us. YEAH! There really isn't anything else to report other than the initial test results on the biopsy they did last night came back negative for a fungal infection.
December 16, 2002 (Linda) 7:35 PM
So much has gone on with Mark today that I don't even know where to start or how.This has been a very busy day again. Mark had to have his stomach, and then his colon scoped due to blood in his stool and had a biopsy done on sores on the inside of his mouth which were also bleeding. The blood in his stools was found to be from the c-diff colitis and what the sores in his mouth are, we won't know until tests start coming back in the morning. The sores on the roof his mouth had just appeared a couple of days ago and at first looked like bruises ...today looking much like what ulcers look like (I think). Again today Mark was non-responsive for the most part and he hasn't received anything for pain or sedation, until this evening when they did the scoping and biopsy, for a couple of days now. His fever got down to normal once today but was back up to a little over 100 this evening. That doesn't sound like alot of fever but Mark is on very high doses of steroids which tend to mask fevers. The doctors are still telling us that the fight isn't over and we know that Mark isn't a quitter.
December 16, 2002 (Linda) 10:30 AM
Today is Mark's 23nd day in the ICU. When arriving at the hospital this morning Mark was receiving his plasmapheresis (plasma exchange) and there seems to be no change from yesterday. He is still running a fever of over a 100 and they attempted to put him on the trach collar to see if he could breath on his own, but it was too difficult for him so he remains on 10 breaths per minute on the ventilator. If you remember it was just a few days ago Mark was doing some breathing on his own and down to 3 bpm on the ventilator.
Keith was scheduled to go home yesterday and cancelled and will stay on until we know what is going on with Mark.
December 15, 2002 (Linda).
Today is Mark's 22nd day in the ICU and has been a pretty busy day. The catheters in his chest and groin area were removed last night due to infection and re-placed today both in the left side of the neck. His fever reached 101.7 during the night which the doctor feels is from the infection in the catheter.The decision was made to drain the fluid that had built up around his lungs (thoracentesis) and tests are being ran from the fluid to check for infections. Today is much like yesterday in that he is very difficult to awake and only awakes for seconds at a time. We are being told that the infections are what is causing Mark to be out of it for the most part. Stacey and I are not completely convinced. Mark's right side twitches while he is asleep and is able to squeeze his hand occasionally when commanded while his left side doesn't have much movement at all. His left side is unable to follow commands at all. He got a break from plasmapheresis today and will start treatments daily tomorrow until Thursday to reassess. Mark is currently receiving 10 breaths per minute on the ventilator since he is wiped out from this infection. Ben and Darin flew back home today and didn't get lost once in Phoenix. We were pretty proud of them! It was good to see them both, and it meant so much to us.
December 14, 2002 (Linda) 1:00 pm
Darin and Ben (classmates of Mark's) made it in last night and were here when Keith and I arrived this morning. Mark had awoken for them and did recognize them and I know he is glad they're here.
Last night the CAT scan revealed nothing. A EEG was just completed and no seizure activity was shown as the doctors thought perhaps Mark had a seizure and that would account for his being difficult to awake. So, we are once again left with no answers. He does seem a little easier to awake today than he was last night...but still very sluggish. His left side appears to be weaker and he does have trouble getting his left eye lid open when we do get him awake. We are told that everything else remains about the same so there really isn't anything else to report.
December 13, 2002 (Stacey)
Yesterday Mark was breathing pretty much on his own for about 9 hours with a trach collar and did very well. When they came to do plasmapheresis they put him back on the ventilator supplying him with 3 breaths per minute since plasmapheresis is pretty hard on the body. His schedule for plasmaphersis is now every other day. He was beat and slept well throughout the night and has basically been sleeping all day. Early this morning they increased his ventilator to supply him with 6 breaths per minute because he was just wiped out from yesterday. His nurse (Tami...she is wonderful!) said he ran a marathon yesterday with his breathing. A couple of days ago Mark started to run a fever and today we found out he tested postive for stenotrophomonas in his lungs so more antibiotics have been started. The pulmonary (lung) doctor wanted an ultrasound done today to check for fluid around the lungs to see if they needed to do a procedure called thoracentesis (a needle puncture into the chest wall to aspirate the fluid out). He did show a moderate amount of fluid on the left side but I haven't heard if they will perform thoracentesis. Mark has lost a total of 35 pounds in fluid so far so we are able to see his cheek bones now. We just tried to wake Mark (6:00 pm), and it was VERY difficult to get him to wake up and once he did he didn't stay awake long so we are going down for a CAT scan. I'll let you know what we find out when I know something. Please continue to pray for Mark.
December 12, 2002 (Stacey)
I guess it is my turn to write an update and boy do I feel the pressure since Tim and Keith write so elegantly. The MRI showed that the lesion in the medulla looked exactly the same as it did two weeks ago, but a lesion that also showed up two weeks ago in the basal ganglia area of the brain is larger now. The doctors really had not expected the lesion in the medulla to show any change and aren't too concern about the larger one because they think the lesions can get larger before they get smaller and Mark is clinically improving. What I could find as far as the function of the basal ganglia area is it controls motor coordination, and Dr. A said it controls the ability to wake up. That made sense to me since Mark had a couple of days he couldn't wake up, but he did so I take that as a good sign. The new MRI has been sent to Dr. Openshaw in L.A. to look at, but we haven't heard what his theory is yet so we really don't know anything different other than the vasculitis theory. Mark has had diarrhea since Tuesday, and we just found out that Mark tested positive for C diff again so the medication Flagyl was started. Last weekend Mark also tested positive for CMV (cytomegalovirus), which he had back in June as well, which can cause you to have low platelets and he does. He was started on an antibiotic to treat the CMV so between the TTP and CMV Mark is really struggling to get his platelets up and is receiving platelets at least once a day. Right now Mark has just started his plasmapheresis which is very tiring on the body (he did get a break from it yesterday) so hopefully he will get some rest during the procedure. Dr. A just stopped by, and I told him that Mark has been blowing kisses today so he blew Dr. A a kiss...it was so cute:) Mark is having some more visitors this weekend...his best friends from high school, Ben Johnson and Darin Hueske, are flying in from Kansas and Oklahoma. It will be good to see them...actually I'm not sure if we will see them because Darin decided to rent a car and neither of them have been to Phoenix. What was Darin thinking???? Two country boys driving the streets of Phoenix...look out here they come!!! Please continue to lift our family up in prayer as I have witnessed so many being answered as Mark is showing a little bit of improvement everyday.
December 11, 2002 (Keith)
Most of you probably check Mark's update, which is attended to on a regular, if not daily basis. It is accurate and informative, but I wanted to give my unscientific, from the hip analysis, based on personal observations and eavesdropping on doctor and nurse conversations.
I stopped in to see Mark last night and this morning. Last night he was very tired and not too conversational (of course he's not conversational because he still isn't able to talk). However, he was much more expressive and seemed to be feeling more secure. I have to say that last week things looked pretty dicey, and some of us were quite fearful of his predicament. This morning he looked better than I have seen him since I have been here. His vitals are all progressing. His eyes look clear and expressive. He is getting much better at communicating, his mouth and facial expressions playing a big part. He is getting daily physical therapy, and as a result is becoming stronger daily, and is becoming more dextrous with his hands (Heaven help us that he may soon control the TV channels). He is becoming more playful and is regaining his sense of dry humor.
He was being sent for an MRI at 10:00 a.m. this morning to see if his brain spots have lessened, disappeared, or if any new ones have developed. Doctors have different opinions about when such an analysis should be done. His primary doctor, Dr. Schriber, thinks it might be a bit early to do another MRI, since it takes time for spots to heal and develop. He would rather wait a few more days when things have had more time to change and develop. I guess I share his opinion for the same reasons. However, another Doctor must have thought otherwise, or else Mark's mom interceded and ordered the procedure herself (as Dr. Schreiber joked), since the MRI will, apparently, be done. At any rate, I expect it will be of value to see if any changes are occurring. I will be interested in any results and analysis that may come from these tests. What Linda wants to see, of course, is that no new spots (lesions) are developing. No one can argue with that.
Since things look better, I expect to be returning to McPherson on Sunday. Linda will remain in Phoenix at least until Mark gets off the ventilator and starts showing other types of progress, such as eating, talking, and gaining more free movement. Progress takes place in many stages. Currently, it is very slow and measured in baby steps, stability being the most sought after property. From the looks of things Mark has achieved the desired stability. Progress, hopefully, will come faster in bigger doses. That, of course, will be determined by the disappearance of the spots on the brain, and the absence of any new ones. We hope that this is the case. If that is how it works out Mark's treatment can take a new and more positive direction. He can definitely make a return to a normal life again when the cause of the spots is absolutely determined, and his treatment can be focused on the lesser medical problems. It will take a while because his body has undergone such an assault (insult, as Dr. Schriber said the other day) from disease and drugs alike. He has much muscle mass to redevelop, and will need much therapy to bring him back to his normal body mass. But, he can do it. And he will.
December 10, 2002 (Linda)
10:55 a.m.
Yesterday, Mark was very tired and slept most of the time...recovering from his busy week-end. They did get him out of bed (by turning him on to a table that can be cranked into as sitting position...they call it the Cadillac Chair) for about 20 minutes. He remains in the ICU unit and has the plasmapheresis treatments daily. A MRI is scheduled for in the morning to check out the status of his spots on the brain. They continue to treat him for vasculitis as they can find no other explaination for the lesions.
His WBC is 1.9 (normal is 4-11), up from 1.3 yesterday; RBC 2.5 (normal is 4.3-6) up from 2.4; platelets are 29 up from 12 (normal is 130-450) and this is after the daily plasmapheresis (platelet exchange and receiving additional platelets last night).
December 7, 2002 (Tim Hein)
5:38p.m.
As I look out Mark's hospital window and see the endless lights of Phoenix and the mountains of Arizona, I'm quickly reminded that I'm not in Kansas anymore, Toto! It's beautiful here.
My flight out of Wichita yesterday was delayed. A light bulb burned that needed to be replaced and took an hour, so I missed my connecting flight in Denver. (No wonder United Airlines is filling for bankruptcy!) That put me here after 11(MST). Stacey and Erin picked me up at the airport (curbside!), Erin had a chicken wrap for me to eat, and they taxied me to the hospital for a midnight visit. (Now that's what I call traveling first-class.) Mark was pretty groggy from a long day and medications so we didn't stay long.
When I came back to the hospital this morning, much to my liking, Mark was very alert. Though his strength is poor, he has been very much engaged to conversing all day long. Because the ventilator is now hooked to the trach in his throat, he can't talk. Now I know what you're thinking - poor Mark, captive audience to Tim, but it's not all been a one-way conversation. Mark mouths words (Stacey is incredible at lip reading!), smiles at my jokes (out of courtesy I'm sure), nods and shakes his head. He can slightly lift his hands for small gestures, but that's about it right now. Mark has, though, shown tremendous improvement over the last few days. The doctors have all mentioned that they have been encouraged by his recent progress.
It's been nice to see Stacey. She's a strong gal and has learned how to lean more and more on the Lord. "In my weakness He is strong," Paul taught us. I got to hug Linda (what a great mother she is to Mark) and talk with Keith. They have been here for quite some time and I know that means so much to Mark and Stacey. It's also been a pleasure meeting Erin (who fed me again this afternoon. I'm thinking I need to hook her up with my brother Shawn!!!). She has been such a blessing for Stacey down here.
And oh, how good it's been for my soul soul to see Mark. He has inspired me. Mark reminds me to how fragile and precious life is and how a man can persevere through even the toughest of trials with God as his Helper.
I leave tomorrow after lunch. I will miss Mark terribly, but he is in truly wonderful hands with people like his Austrailian nurse, Sam. (We haven't agreed on who has "the accent", me or her, but we sure sound different!)
God has started a wonderful work in the Shoulders family and I'm excited to see what's to come. I'm signing off now - Mark and I are needing to watch the Big 12 Championship Game. Go Sooners!
"The Lord is my light and my salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid? When evil men advance against me to devour my flesh,... even then will I be confident. One thing I ask of the Lord, this is what I seek: that I may dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to seek him in his temple."
God bless you all. Tim
December 6, 2002 (Stacey)
3:33 p.m.
At 3:00 they started his treatment for TTP but are not doing plasmapheresis today but something called Prosorba Column Therapy which will be done tomorrow as well. Linda will make a link explaining what it is. The doctor said they have seen better results in treating TTP when combining plasmaphersis with Prosorba Column Therapy.
2:02 p.m.
Mark is back in his room from surgery (placement of the trach), and it went well. He is sleeping now but has woken up since the surgery. Linda and I are sitting up here with him. I will write more later.
December 5, 2002 (Stacey)
Mark has been pretty sleepy today and started receiving a continuous drip of pain medication (fentanyl) last night due to a constant headache. I'm not sure if he has pancreatitis but both enzymes amylase and lipase came down today so that was good. He is receiving his third round of plasmapheresis as I'm typing (Mark's mom brought the computer up to the hospital so now I can type the updates while I sit up here with Mark). Mark is scheduled to have the trach placed in at 11:00 tomorrow morning so the ventilator can come out. They did have to place his arms in retraints last night because he was wanting to take the ventilator out but took them off today since he was so sleepy. Overall today was an uneventful day (PTL) and Mark got a lot of rest. Plese continue to lift Mark up in prayer.
December 4, 2002 (Stacey)
Today Mark has battled with a headache off and on but the pain medication seemed to help.  A couple of Mark's enzymes that have to do with your pancreas were elevated today (amylase and lipase), and he complained of abdominal tenderness so an ultrasound was performed tonight.  He could possibly have pancreatitis (inflammation of the pancreas), but we don't know the results of the ultrasound yet and the tech did say she couldn't get a very good picture of his pancreas because there was a lot of  fluid around it.  Mark is retaining a lot of fluid and has pleural effusions which is fluid in the pleural space of the lungs.  Later this afternoon his oxygen sats  dropped so they increased his oxygen a little and seems to be doing fine.  Now that Mark is awake he is really not enjoying having the ventilator in and keeps bringing his hands up to it wanting to take it out himself.  I won't be surprised if tomorrow when I go back to the hospital Mark's arms are in restraints.  Also people that are in the hospital for long periods of time that just lay in bed can get a condition called foot drop.  Like when you sleep, the tops of your feet fall forward so think about your feet being like that 24/7.  After a while your feet won't like the idea to flex backwards so Mark gets to wear these boots called prafo for 2 hour increments to prevent foot drop.  He also completed his second round of plasmapheresis tonight and did fine.  Shane Doan from the Phoenix Coyotes came to see Mark this afternoon and brought him one of his jerseys.  He signed the back of it "Mark, To my inspiration Shane Doan".  He was a very sweet and caring person and was really encouraging Mark.  I know it meant a lot to him, and we took pictures so be looking for them on the webpage soon.  I know the doctors aren't certain that Mark has TTP or what exactly these lesions are in Mark's brain so please continue to pray for wisdom for the doctors and for a total healing of Mark.
December 3, 2002 (Stacey)
First I want to apologize if my update makes no sense or I'm rambling because it has been a very long day.  I'm still processing everything that was told to us as well as everything done to Mark and of course I have to research what they told us so I understand it better (I'm still in that process).  The swelling in Mark's left arm and hand looked much better today, and the ultrasound showed no blood clot.  His feeding tube was fixed so it is no longer coiled around his tongue.  The trach placement has been postponed until Friday because they feel Mark is too weak at this point to go through the surgery.  This morning Mark had a severe headache and was given some pain medicine that seemed to help.  Then later he started to have a problem breathing in which he was struggling to breath and breathing very rapidly.  They increased his oxygen which helped.  He still has diarrhea but has slowed down and experienced pain off and on in his arms and legs.  One of the ICU doctors (the ICU doctors have been wonderful and very caring...I've been impressed) talked to us to explain what they are thinking is going on with Mark besides the brain problems. We didn't know he had anymore problems so it was kind of a shock. They are thinking  that Mark might have Thrombotic Thrombocytopenic Purpura (TTP) because some of his lab values are elevated that are markers in diagnosing this disorder.  His platelets are low, his bilirubin is high as well as his LDH.  Dr. Schriber talked to us in length about everything going on and said he isn't certain that Mark has TTP but he won't be in danger if he doesn't by starting treatment so we have nothing to lose.  If I told you all the symptoms of TTP and I won't because there is a lot, Mark has almost all of them.  I really don't know how to describe TTP so I will give you a definition I found on the internet.  TTP is a disorder of the blood characterized by low platelets, low red blood cell count, and neurological abnormalities.  This is a very serious disease that is treated by a procedure called plasmapheresis (plasma exchange).  Mark had to have another catheter  put in today because the lines were too small on the one he currently has to perform plasmapheresis.  It was placed in his groin area but prior to the procedure Mark was given medicine to relaxed him.  The doctor came and talked to us after he placed the catheter in and said Mark was pretty scared so he received a lot more medication than they anticipated he would.  The doctor said he would probably sleep for quite a while, and he knew I was concerned prior to the procedure because Mark took so long to wake up earlier in the week from his sedation medicine.  The nurse came out shortly after the doctor left to tell us Mark was all cleaned up...I said is Mark really out of it and sleeping.  She said "no  he's awake!"  (PTL)...it was music to my ears.  Plasmapheresis was completed a little after 7:30 tonight, and he did fine.  Initially he was a little scared because he is not sure what is going on and they bring in this big machine to do the procedure.  It is actually amazing to watch.  Basically Mark's blood comes out through the catheter into this machine that spins it very rapidly (like 2000 times per minute) to separate the blood and plasma.  His plasma goes into a bag since that is where all the bad stuff is and new plasma from a blood bank is infused with his blood and put back into his body through the other line in the catheter.  He will do this everyday through Sunday and then he will be evaluated to see how frequent it should be done.  A response to plasma exchange should be seen within 5 to 10 days.  Okay enough rambling...I'm going to bed!  Oh I almost forgot...Shane Doan who plays for the Phoenix Coyotes hockey team is coming to see Mark tomorrow.  Also a friend of ours, Tim Hein, is coming to see Mark this weekend from Kansas.  His eyes lit up when I told him...it will be so good to see him.  Please pray for us.
December 2, 2002 (Stacey)
Mark was more awake today and his kidneys are working properly now so the renal doctor has signed off on Mark unless he has more problems.  His liver lab values continue to be high but so far the doctors are just  waiting to see if they continue to go up.  Mark is not going to receive anymore sedation medicine because they were concerned he wasn't going to wake up.  His feeding tube is coiled in his mouth (it has been for the last two days) but still goes down to his stomach and it has really been bothering Mark today.  Tomorrow Mark will probably get the ventilator taken out and have the trach put in (hopefully fix the feeding tube as well).   His heart rate continues to be high and elevated last night so an EKG was done last night and everything looked fine.  Also his left arm and hand is very swollen today so an ultrasound was done of his arm to check for a blood clot but the results have not been revealed to us yet.  Mark continues to have diarrhea and was in some pain today with his arms, head and chest but was given some pain medicine that seemed to help.  My dad, sister Kim, nephew Trent, and little Kenzie made it back safely to Kansas.  Please continue to pray for our family.
December 1, 2002 (Stacey)
I really don't know much more today than yesterday.  Mark's BUN and Creatinine came down some more today which is a positive sign, but his kidney's still aren't working great.  A couple of Mark's lab values regarding his liver were high today but so far the doctors aren't concerned.  Nothing was said about placing the trach in and nothing was written in his orders so I'm pretty sure it won't be done tomorrow.  Mark was still pretty much out of it all day but occasionally would open his eyes.  Early this evening Mark was looking at me (now when Mark is looking at you it is like a blank stare) I asked him to squeeze my hand and he did so then I asked him to wiggle his feet and he did (PTL).  I was very encouraged by that because we haven't been able to get a response as far as a command since they stopped the sedation medicine yesterday morning.  The doctors are thinking the cause for Mark not waking up from the sedation medicine is due to the lesions in his brain.  The doctors are really stressing that we be patient because it could be a while before we see any improvements in Mark  (something to pray about since I know I'm not the most patient person).  Aunt Pam and Uncle Terry got my mom, Kylie and Caden to Kansas safely and were almost to Tulsa when I talked to them.  My dad, sister, nephew Trent and Kenzie left this morning to head back to Kansas.  Please continue to lift our family up in prayer.

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