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...

Email from Wes
Mood:  lazy
Now Playing: Off-site Housing Information
Topic: Update
It's nearly 5:00 p.m. Tuesday, March 13, & I got a call telling me an off-site apartment is available immediately, so I told the coordinator to "HOLD IT" for me & my family members.

It's 3 blocks from here, with shuttle-service & underground parking. It's # 1028, but I don't have an exact address yet? Electricity & phone are extra but he said electricity cost about $25/month.

Family members can use it immediately & I've ask John & Verna to view it to see what it has & what it needs?

I'm still doing quite well here in "lockup", but will leave my room (finally) Thursday for radiation!

Love, hugs, & thanks from me, Dad-Wes-Grandpa Wes

A haiku for you
Mood:  d'oh
Now Playing: This ain't yer momma's Keats...
Topic: Update
No news, window views.

Cannot poop, chicken soup.

All is well, bored as hell.

Bowel Movement Therapy.

Sunday Update
Mood:  cheeky
Now Playing: Highlights
Topic: Update
Samantha and Cortnie joined me yesterday afternoon for a quick visit to see Dad. We got the laptop set up, tested the treadmill, used up the last of a roll of film, visited the weekend-depleted cafeteria, brought him a 'liquid-cookie' (caramel-flavored cappuccino), explored the fully-stocked patient/visitor kitchen, and got him a long-distance calling card.

Kelly, her two kids Jake and Jessie, and brother Warren stopped by as we were leaving. Combine all that with the multitude of phone calls, and I'm sure he had good company throughout the evening.

Warren starts his 'shots' today. He's supposed to go into the BMT clinic each morning for the next four days to get some sort of drug that 'tricks' his bone marrow into releasing extra stem-cells into his blood stream. Then, on Thursday, they'll hook him up to "The Machine" to collect what they need for the transplant. Sister Verna plans to come to the Cities then so she can be there for the Friday procedure.

So far, so good!

Saturday Recap
Mood:  a-ok
Topic: Update
Visitor recap from yesterday: Paul Johnson (sister Verna's son) from Chicago; Joel and Dori; Kelly (brother Warren's oldest daughter) and her friend Karen Stremick (who works as a nurse on 6th floor); State Representative Bud Nornes from Fergus Falls; Jim Frazee (Mabel's son) and his daughter Brooke.

Dad says now that chemo started (slight headache initially that went away), they've told him he cannot leave his room. So, he's waiting for me to show up today and get his laptop set up. Plus, he's ordered a treadmill delivered to his room to help keep active. These next few weeks might test his stircraziness (is that an actual word?)...

THE BIG DAY...
Mood:  quizzical
Now Playing: Dad checks in
Topic: Update
Casa Schierman in Chaska hosted Uncle Al and Dad last night, as my wonderful girls put out the proverbial Red Carpet for our overnight guests. After unpacking and deciding on who stays in which kids' room, we meandered over to the new Ruby Tuesday for a bite to eat. Note to self: wait longer to visit a restaurant so wait staff and cooks don't use us a guinea pigs for training...

Arrived at the U of M on time (caravan style), got through their 'orientation' process (with an intake nurse who didn't fully appreciate our witty sense of wry humor), moved Dad's stuff up to his room (holy crap, how much stuff does one man need? does he think he's staying a month or something?!?), had lunch with State Rep Bud Nornes (whose wife was there recovering from surgery), and left him in good hands (and spirits).

His direct phone into his room: 612-273-0214

His Room #: 4-321

PLEASE NOTE, that if you do plan to visit him that the BMT floor has VERY strict rules and enforces them with very large Romanian nurses named Helga and Lars. Seriously, if you have a cold, don't go. If you have used FluMist, don't go. You must wash up upon entering the floor. You must wear a mask on the floor if you have been around kids who have had recent immunizations. You cannot bring in flowers or food. You cannot wear your coat into a patient's room. There are lockers in the Family Lounge to store your personal belongings rather than bringing them into the room. The floor is filled with people whose immune systems are either non-existent or slowly rebuilding - an open sore, a nagging cough, or even an eye sty could be enough to put any of these brave souls on death's door... Please err on the side of caution - even though Dad will appreciate visitors over the next month or so, be vigilant and don't put him in harms way - he's been through enough already, right? If you have specific questions or concerns about a visit, just call the nurses station (phone number listed in the previous blog posting).

Chemo starts tomorrow. Say a prayer...

BMT SCHEDULE
Mood:  not sure
Now Playing: T-minus 3 days and counting...
Topic: Update
My Intake-Nurse called this afternoon to tell me I should report to the U of M hospital at 9:30 AM this Friday.

First order of business is a visit to the Radiology Department where I'll have (minor) surgery at 11:00 to have the "line" (a Hickman catheter-port) placed in my right shoulder.

I'll begin 5 days of chemotherapy on Saturday, 3/10, & finish Wednesday, Mar. 14, followed by full body radiation on Thursday. Brother Warren will report Monday, March 12 & continue each day until Friday, March 16 when they'll collect stem-cells from him. Shortly after wards, I'll receive his stem-cells through transfusion on Friday, & Warren should be released, unless they need to collect more, which is unlikely, we're told.

I can have up to 3 visitors at a time, if healthy, but NO plants, flowers or balloons allowed in my
room. Since my immune system might be near zero for a few days, I can't promise I'll be up to many phone calls and/or visitors during my second week in the hospital? I will not have my cell-phone in the hospital, as they're not allowed, but calls to my siblings or my sons will give you information on my status:

Al & Becky = 218/863-8112
Verna & Jerry = 218/736-4864
Warren & Lynn = 701/235-7063
John = 612/670-3958
Joel & Dori = 612/961-6857

My e-mail address (wesonlida@loretel.net) can be used, as Becky will check it at my home, & I will try retrieve messages from my laptop, which will use the same e-mail address.

My room during recovery will be on PCU 4B, U of M Medical Center, Fairview Hospital, 500 Harvard Street SE, Minneapolis, MN, 55455

Hospital telephone: (612) 273-3042

Below each new blog is a "post your comment" as an easy way to respond also!

Thank you!

Wes

(After I'm discharged from the hospital I'll have an off-site mailing address & my own cell-phone (612/240-3934) will be available for making & receiving calls! When? A month?)

Snow-rific!
Mood:  cool
Topic: Update


I thought you'd like to see how I spent part of Sunday afternoon... Great weather: 32F & lots of new snow!!

Maybe the U of M will call me this week about admission date?