News from the front...
Mood:  suave
Now Playing: C'est la vie
Topic: Update

Brother Al took over as primary caregiver earlier this week, and brother Warren arrives this weekend for a few days before Verna returns early next week.

Mary's daughter Gail is coming from Austin Texas, on May 2nd for a week and former Pelican Rapids neighbor Ed McDunn is slated for sometime in May also. So far, we haven't had to rely much on many of you who kindly offered to help out with the 24/7 caregiver responsibilities. We've got the list of names posted at the apartment should the need arise though.

The BMT nurse-coordinator, Kathy Hodges, told Dad that Warren's stem cells are now 100% into Dad's marrow. Yippee! But she also warned him that he is still at risk for developing Graft-Versus-Host Disease, so we're not out of the proverbial woods yet.

I can't help but remember back to just a few weeks ago when I visited Dad on the BMT floor. I'd never seen anybody come or go from the neighboring hospital room just to the right of Dad's, but the nurses said the floor was fully occupied (and that there was a waiting list of new BMT patients). I thought it was strange that the room's vertical blinds were always closed whereas Dad preferred his open (except when he was napping). As I was washing up and putting on my rubber gloves-n-gown, their door abruptly opened. Out came what I assumed to be a motherly figure, followed closely by a slow-moving aluminum walker that the elderly use for stability. Guiding the walker was the skinniest, most wane spectacle of a young women I had ever seen. Her mask, pulled tight against her pale cheeks, barely hid the bags under her eyes. Covering her bald head was a bright do-rag that did little to offset her hollow, sunken eyes that were the deepest blue I can remember. Somewhere inside that shell of a woman I could barely guess at the stunning beauty she once was, before Leukemia. Every subtle movement she made seemed forced and labored. I could tell she didn't want to leave the safe confines of her room. Following her was her Dad. We made eye contact. I nodded, he reciprocated, and then dropped his eyes to the floor. Nothing else was said, but in that brief moment I caught a rare glimpse of the "there but for the grace of God go I" (or Dad) adage.

According to my calendar, tomorrow is exactly six weeks since Dad checked into the U of M hospital for his Bone Marrow Transplant. By all accounts, he's ahead of schedule, doing wonderfully, and on track for a completion of yet another miracle.

What a weekend...
Mood:  a-ok
Now Playing: Lookin' good
Topic: Update
The girls and I joined Dad and Verna for supper (dinner?) Sunday afternoon: a crock-potted roast (thanks Joel) with potatoes (pa-taa-toes?) and carrots, capped off with pie and root beer floats. Nummy!

I don't know exactly how to explain it, but he's now got a (newly-found?) sense of humor that is both refreshing and entertaining. It's not like he didn't laugh or joke or kid around before all this started, but I've noticed something different in Dad's demeanor that I truly enjoy. Maybe we can attribute it to... perspective?

I do know this: I'm going to miss having him this close (geographically) once he heads back to the lake for good. Who knows, maybe that's one of the 'silver linings' in this whole episode...

I got nothin'...
Mood:  rushed
Now Playing: No gnus is good gnus
Topic: Update
Results from the biopsy were excellent: 0% blasts = no Leukemia cells, and 95% of the stem cells in Dad's bone marrow are Warren's!

Not much else for news: people call, people visit, people email, Verna brings Dad to clinic visits, they eat, sleep, and relax around the apartment day after day after day... They've gone out shopping too.

Easter review
Mood:  happy
Now Playing: Hallelujah!
Topic: Update
Wes and I spent a very nice Easter Sunday afternoon with the Magnusons. Kelly put a great spread: Honeybaked ham, asparagus with Hollandaise sauce, caramelized carrots, cheesey potatoes, strawberry jello with homemade whipped cream, and Dad's favorite rhubarb dessert. We pilfered Jake and Jessie's candy stash, saw Rick's progress on their addition, and polished off a couple bottles of wine.

Things are going well from a BMT standpoint. He had a biopsy last Friday to determine white cell counts in the bone marrow and check for progress of the transfusion taking hold. Results of the tests will take a while, but we'll update y'all once we hear. They have cut back on a couple of his medications due to elevated readings in the liver and kidneys, but nothing to be alarmed about according to his doctors. Clinic appointments are no longer a daily ritual but rather "as deemed necessary" so he skipped the weekend, had one Monday, skipped Tuesday, has one Wednesday and Thursday... I think.

I'm thinking, even though I have no empirical data or medical evidence to support it, that he'll be sent home sooner rather than later. They'll probably give him a "weekend pass" within the next couple of weeks, followed by even less frequent clinic appointment, and eventually a permanent move back to Lake Lida.

I've got an idea! Let's start a betting pool! there has been a annual "pool" to guess the Ice-Out date on Lake Lida. So, why not do the same with Dad's ultimate release date? How about $1 per guess, winner take all? Enter your guess under the 'Post a comment' section here.

Hmmmmmm.... I'm taking May 4th.

The more things change, the more things stay the same
Mood:  happy
Now Playing: By John
Topic: Update
Ed Karels had been taking over as Caregiver since Verna left on Thursday. I took over this morning and will be here until Ed returns Sunday night. Looks like Joel will be here Monday, Kelly Tuesday, and Verna returns Wednesday to take another seven days.

Today we ventured out of the apartment for Dad's first non-clinic-related trip. He went into Target with me (masked up), stayed in the car while I shopped at Rainbow Foods for him, and got to listen to the beggar outside the liquor store.

Not much else new. No clinic appointment until Monday. I didn't kill him when flushing his port with Heparin. It's relaxing around here, almost quietly boring for an on-campus college apartment.

Warren, Argyle House, and etceteras
Mood:  mischievious
Now Playing: More pictures without captions

Hair today, gone tomorrow...
Mood:  sad
Now Playing: No explanation necessary
Topic: Update

VOLUNTEER CAREGIVER ALERT
Mood:  special
Now Playing: 24/7 In-house Helper
Topic: Update
As most of you know, even though Wes is now in his on-campus apartment, he still needs help and convalescing time before he gets better and permanently cured. The doctors have told him that "the true measure of whether the BMT actually took hold and worked won't be know for at least a year..." Between now and then, he cannot dig in the dirt for gardening, he must wear a respiratory mask in public, he should not clean litter boxes, he cannot have real flowers or balloons in his apartment, he must use an electric razor, he cannot... the list goes on and on.

For the immediate future, he is staying close to the BMT clinic near the U of M so he can get to his appointments AND be close to the hospital should he need immediate medical care.

Verna has taken the lead on being his primary caregiver while he's at his apartment. This required her (along with Al, Becky, John & Cortnie) to attend a 90-minute training session on Dad's aftercare, including how to sterilize a Hickman catheter-port without giving him an embolism, what to do in case of emergency, preventative measures to limit infections, diet guidelines, etc. However, she cannot obviously be there for the next 30-60 days straight...

Thus the plea: Dad must have 24-hour-a-day, 7-days-a-week adult supervision while at his apartment. And this Caregiver Position isn't just being there to share meals, clean up, or accompany him to clinic appointments. It requires helping him protect his Hickman prior to showering. The caregiver must also help in putting anti-coagulant into the port through a sterile syringe. There is a multi-page training booklet that the caregiver must read and understand. It's not like babysitting, it's more like an in-house home health aide.

No, I'm not trying to scare volunteers off. I'm just trying to be honest with our expectations. You can't just show up a half-hour before the last caregiver leaves - there are procedures that you need to be trained how to do correctly. You must stay overnight - and be able to check for signs of infection. You need to be free of disease and infections yourself - cleanliness is next to Godliness, right?

Dad's not over the proverbial "hump" yet (even though he THINKS he is - LOL). There are still too many opportunities for things to go wrong, but the guidance and training from the U of M staff is wonderful, so you shouldn't feel like you'll be going it alone.

Joel and Verna will be coordinating the April caregiver schedule today. For those of you who have already said "I'll help!" look for an email from Joel soon. Or just click on "post your comment" below if you want to throw your hat into the ring.

Be prepared though, Dad's been a "model" patient while he was in the hospital, but now that he's broken out of solitary confinement... the inmate is running the asylum!

By Samantha Schierman
Mood:  party time!
Now Playing: Written By 10 Year Old Grandaughter
Topic: Update
Grandpa was on the comfiest chair in the house when I came. My Dad put in a printer (for the laptop). Grandpa sat in the chair until we ate(he went for 3 walks before). We ate in the meeting room. The kids set up party stuff. Grandpa sat in that room a little but it was cold and you couldn't change the temperature. The kids and Kelly went to the workout room. He went back to his room once we finished eating. then he open some presents. He got a new car...........kidding April Fools!HA HA HA HA! After that we had Cake,Ice Cream,and,Brownies.

Update by Cortnie Schierman
Mood:  spacey
Now Playing: Today's blog written by Grand Daughter, Age 12
Topic: Update
Yesterday 3-30-07 my dad, my sisters and I went to visit grandpa Wes. We had been in town after the Shrine Circus so we decided to go visit him. When we got there I got myself a Cafe Mocca, like my dad and we went to check on him. His lights where off and he was asleep so we went out to call Verna, Becky and Al. My dad had called grandpa's room on accident instead of Al's cell phone, so that woke him up. We put on the masks, gloves and the yellow robes. My sisters and I went in to the room well our dad waited outside. We chatted until Verna, Al, and Becky came. Then grandpa had to go to the meeting on how to clean his Hickman port. I went too, but my sisters stayed and kept the nurses busy. I heard that they raided the family/ pantry and that they watched Disney Channel. I went to the meeting and I learned how to clean grandpas Hickman port. We sat there while the doctor talked about the dos and don'ts. Verna got to practice on a dummy. We all got packets that told us how to do everything step by step. I did not think that the meeting was boring. I learned a lot. My dad and I left early to go get food after that I do not know what they did. We got pizza for grandpa and Verna. Then we dropped off all the stuff we had for grandpa's apartment. When grandpa got there he wanted to try out his recliner. He said it was OK. I unpacked his bathroom bags while my sisters set up his room. When my grandpa got out of the hospital I think he was happy to finally get out of the environmentally controlled room. I was happy for him.

BLOG POSTING FROM WES
Mood:  smelly
Now Playing: Confessions of a retired drama king...
Topic: Update
Effective Saturday, March 31st my address will be:

Wes Schierman
920 Delaware Street SE
#1028
Minneapolis, MN 55414

For those looking to visit, the building is known as The Argyle House. There is very limited on-street parking, but there is a BIG parking ramp straight west of the apartment building. If you do plan on stopping by, please give me a call first - mostly to make sure I'm there, but also to see if I'm "up" for visitors that day.

Wes' Cell Phone: (612) 240-3934

I will be there, according to my doctor, for the next "month or two." I might even be able to get to the lake for a weekend or two between now and then. They have weened my off IVs, so I'm totally on pills (40 per day). I'll report to the BMT clinic Saturday for the first time - my daily clinic schedule after that will be pretty much up to me. After a while, the daily visits will go to every-other day, barring any setbacks. Blood draw each day, transfusions as needed, vital checks and such will be the daily ritual at the clinic. They told me that I probably won't lose any more hair - they said it usually falls out within two weeks after the irradiation, and I haven't noticed it yet (fingers crossed!)

Verna, Al & Becky, John and the girls will be here Friday to attend meetings and help me get moved to the apartment. Joel and Dori said they'll try to stop by sometime this weekend. Warren decided not to come down this weekend.

We'll probably do an informal Birthday Celebration on Sunday early afternoon int the apartment complex meeting room, even though my 67th isn't until Monday. Feel free to stop by, but be forewarned that I may not be up to a long party and may head back to my apartment for a rest. I'm sure the rest of my family would appreciate seeing and visiting with you too!

Verna will be my 24/7 caregiver until Wednesday, April 4th, so I'll need to rely on others when she cannot be here (or needs a break).

I want to thank each and every one of you for your cards, calls, letters, visits, blog comments, prayers, and kind thoughts.

Still on track...
Mood:  chatty
Now Playing: They're gonna spring him Friday
Topic: Update
White blood cell count is up to 2.6 as of this morning. Combine that with the neutrophyle count of 1.9 and things are looking peachy! They told him that the neutrophyle count is more of an indicator that the transfusion is taking hold and it is the factor they hold more important than white blood cell count. As long as they both continue to rise in conjunction with each other, things are good.

I will provide a blog update later this week with an address for the apartment (mail, cards, visitor instructions, etc.). He will be using his cell phone once they release him and does not plan to get a land-line in the apartment.

Look for an email from my brother, Joel, sometime over the upcoming weekend if you volunteered to be a caregiver.

GOOD NEWS, BAD NEWS...
Mood:  celebratory
Now Playing: Hospital Release Set For Friday!
Topic: Update
Dad called this morning...

The good news is that they are releasing him from the hospital this Friday!

The bad news is that they are releasing him from the hospital this Friday... and, as a family, we not totally prepared and ready for that. But we will be by then, I hope.

So, if you want to visit him this week, I suggest you do it soon. Simply check in at the Nurses Station on 4B prior to entering his room and they will give you instructions, show you where to wash and how to garb-up.

If you had "volunteered" to be one of the 24/7 care-givers, be prepared for a call from Verna Johnson (his sister) to coordinate times available, care instructions/classes, and apartment logistics.

Look for a blog posting later this week with apartment address and info about his stay there.

Weekend update
Mood:  suave
Now Playing: Same old, same old...
Topic: Update
White blood cell count rose to 0.7 as of yesterday.

Getting appetite back.

Sense of humor is alive and well.

Staff is referring to him as "the model patient."

He says he's got a daily 'routine' that's keeping him occupied and focused.

Do you realize it's been 18 days since he first checked into the hospital and 10 days since the transplant?

His room phone now has an answering machine hooked up to it, so feel free to call him sometime. If you do get the machine, it's because he's in the bathroom or on the treadmill. (612) 273-0214

News and Notes
Mood:  lyrical
Now Playing: Last few days...
Al and Verna came to visit on Thursday. John and Joel both stopped in on Friday at different times. Ed Karels is coming to visit today - he's bringing grapefruit in hopes that it gets Dad's "system" back on track.

White blood cell count jumped from 0.1 to 0.4 in the last couple of days, which is a good sign. Got another platelet transfusion today. They started him on a Calorie Count yesterday in hopes that they can determine whether he's getting enough nutrition. Everything else looks good and on track.

He says he's not as energetic as he'd like to be.

"How's your Dad?"
Mood:  bright
Now Playing: Doing good so far...
Topic: Update
He's checking his emails.

He's getting some visitors and talking to people who call.

He's optimistic, positive, and upbeat.

His day consists of being poked and prodded by nurses (every four hours), reading the papers to stay up on current events (StarTrib, Pelican Rapids Press, etc.), checking the weather (on virtually every channel), picking apart his meals (literally and figuratively), and trying to maintain a sense of humor and independence.

Shaving and showering have become an every-other-day occurrence. Pajama pants and T-shirts are the most comfortable garb.

His is fighting a slight head cold - sinus headache, drippy nose, congestion - but they're not worried about it, unless he gets a fever.

He's at his absolute most vulnerable stage right now: white cell count non-existent (normal is 8.0, he's at 0.1), red cell and platelet transfusions are necessary as needed, doses of antibiotics dripping from bags into him, and the transfusion is trying to take hold. But his metabolic workup is good: potassium, chlorine, glucose, and other factors show that his body is performing normally.

He's not going stir-crazy... yet.

Recent Pictures at hospital and apartment
Mood:  a-ok
Now Playing: Taken by Lynn Manning
Topic: Update

Weekend Update
Mood:  special
Now Playing: Bone Marrow Transplant
Topic: Update
They started putting the stem cells from Warren into Dad on Friday night and finished up on Saturday. Not much to now except wait. The mix of anti-rejection drugs, chemo and radiation usually takes its toll on recipients, but so far the doctors are optimistically surprised at Dad's lack of major side-effects and told him that, barring any set-backs, he could be released sooner rather than later. The nurses told him the record for shortest stay was 3 weeks - I think he's out to break it!

He's got a bit of reflux, tight abdomen, a lack of appetite and less energy, but said he didn't feel any different after the transplant. Kelly and Verna kidded him a bit, saying that he's starting to look, talk and act more like his twin brother...

The next few days should be uneventful, we hope. The biggest challenges with a BMT are outright rejection, Graft Versus Host Disease (GVHD), and infections. We've been told that GVHD symptoms wouldn't appear for 7-10 days. Rejection could happen anytime up to 30 days. Infections could happen any time, but they are taking precautions and seem to know what they are doing. No straight-razors to shave with, only soft bristled toothbrushes, and no flossing are only a few the the precautions on the list.

What happens when they "suppress" the immune system for a BMT is that the three components of a person's blood all drop to dangerous levels. The white blood cells (which fight infection) are virtually non-existent, opening the chance of a minor cold turning into untreatable pneumonia. The platelets (which provide clotting) aren't able to do their job, so even an unnoticed mouth scratch could go undetected and cause a patient to bleed out internally. The red blood cells (which bring oxygen and nutrients throughout the body) are even hampered in their ability, so the nurses closely monitor every aspect of vital signs and blood hematology.

Leukemia is a cancer that affects a person's bone marrow from making the correct components in their blood, and the hope is that Dad's body will accept Warren's bone-marrow/stem-cell transfusion and these new cells will take hold in Dad's bone marrow, kick out the bad Leukemia cells, and start producing the correct blood components.

He's keeping a daily journal of his stay there, writing a bit in it each night. His penmanship has gotten sloppier as the days progress, but not sure if that's from lack of enthusiasm, needing new bifocals, or some other physical side-effect.

The girls and I visited him this afternoon. We scrubbed up, disinfected, checked in at the nurses station, put on masks, gloves, and gowns. It was slightly comical, but necessary as Dad's immune system is at its absolute lowest for the next week or so. He seems fine, almost jovial, given he's been confined to one room for 10 days. I can tell he's tired, but appreciated the visit.

Remember, if you do plan to visit him within the next couple of weeks, call ahead to the nurses station to get pre-approval. And if you try calling him and don't get an answer, he's either in the bathroom or trying to rest.

Or he's hooked up with the strolling hall-walker from Merit Care and they've escaped together, One Flew Over The Cuckoo's's Nest-style...

What's up, doc?
Mood:  chillin'
Now Playing: Friday re-cap
Topic: Update
I arrived at the hospital a little before 9 am on Friday and went straight to Dad's room, only to walk in and see a big white sheet pulled all the way up covering him from toe to head...

Turns out it was Wes' way of dealing with the chills and a post-radiation headache, not the stereotypical TV version of a "code-blue-stat!" gone bad.

After a quick how-de-do, I meandered over to the Phillips-Wangenstein building to find Warren tucked away in a room back in the bowels of the clinic's basement. He was sitting bare-chested in a dentist-like chair next to a machine that hummed from a large spinning cylindrical drum that was the 'separator' of his white blood stem cells. Even though he wouldn't admit it (to me or the nurse), he looked a bit apprehensive and slightly scared...

Not wanting to overstay my welcome in the donor room, I ambled back over to UMMC (University of Minnesota Medical Center) and happened into Verna who was finishing off her coffee in the main lobby. We then found our way, eventually, to the Mayo building to meet with the guy in charge of off-site housing arrangements. A long instruction list of "enter here, park there, do this, don't do that, have some, need some, read this, sign here please" and we were ushered off with the keys to Dad's new apartment.

We happened upon Jim & Lynn Manning (down from Barnsville to cheer on the girls basketball team), hooked up with cousin Kelly, and went off as a group to check out Dad's new college campus digs. Lynn took pictures of the fully-furnished and quasi-spacious apartment which I will post here once I receive them via email from her. We all agreed that it was better than we'd imagined, complete with major appliances, minor conveniences, laundry and workout facilities, and underground heated parking. Verna plans to ready the bedrooms next time she's down, Kelly said she's got some fake plants to liven up the place, and I will be taking the girls over there tomorrow with a load of wall-hangings and knick-knacks to make it feel more like home.

We then parted ways with the Mannings, grabbed a quick lunch, and waited for Warren to finish his donation session. He'd found out earlier that morning that it is often necessary for the donor to come back, often up to four times, in order for them to collect enough stem-cells for the transplant (especially with older donors). However, we wouldn't find out until later that evening after they'd gotten the results from their lab. Imagine yourself in the same uncomfortable position unable to move your outstretched arms even to itch your own nose without an alarm going off for five bladder-stretching monotonous hours and you'll get a vague understanding of what he went through...

I left Verna and Warren in Dad's room a little before 4 pm so that I'd have an opportunity to get ahead of the evening rush hour traffic. After picking up my girls, we joined Kelly & Rick, their kids Jake & Jessie, Warren and Verna for dinner at Hoolihan's in Richfield (thanks again Auntie, not necessary but much appreciated!). The lab called at some point to inform Warren that they'd need him back bright-n-early Saturday, but only for a couple hours not the full five again. He looked utterly exhausted, but seemed to cheer up a bit and take pride in them telling him his output was more indicative of a strapping 20-something than a grey-haired senior citizen!

Again, thank you Warren, for going through this. God bless you, your supportive family, and may He give you the strength and quick recovery you deserve.

First day of side-effects...
Mood:  on fire
Now Playing: By John
Topic: Update
Last batch of chemo was at 10am Wednesday morning...

It's the first day he hasn't really been himself, but what can you expect when they drip poison (chemo drugs) directly into your bloodstream?

He's feeling tired, but did use the treadmill a bit this morning. No appetite, but trying to eat 'cause they tell him he's gotta keep up his strength. He's had a couple of platelet transfusions the last few days. His voice is a bit weak, so if you call he may listen more than speak. Retaining water weight, so they're pushing Lasik into him which make you have to pee every 20 minutes. The itching has started again and even though the nurses offer to rub him down with moisturizer, it doesn't seem to do the trick. Tough to get a complete night's sleep with them checking vitals and waking him for this and that. The doctors did tell him that he's doing well, and since this is supposed to be a "reduced intensity" Bone Marrow Transplant, that he might not experience all the harsh, negative side-effects of the anti-rejection drugs.

I am impressed with the care, attitude, and professionalism of the staff at this hospital. Nothing against Merit Care in Fargo, but it's like flying Jet Blue versus Northwest Gold Club. They all seem to know his personal health history and are doing everything possible not to repeat what happened before. I do have to say that their maintenance staff leaves something to be desired though: full trash bins, broken coffee maker, dirty public bathrooms, etc. Maybe they'll offer Warren a job?

They put a new sign on his door that requires anybody who comes in contact with him to wear rubber gloves, a gown, and a mask.

Tomorrow is the Total Body Irradiation which, with the chemo, is supposed to suppress his immune system enough to make the transplant take hold.

Warren is even feeling the side-effects from his shots: achy all over with only Tylenol to help. He's scheduled for a 4-6 hour stint on Friday morning to donate. He and I did get a chance to walk over to the new apartment: 3 1/2 blocks away, underground parking, security access, furnished, and nice courtyard. So if any friends or family need a place to stay prior to Dad's release from the hospital, both Verna and I will have keys and directions...