Tuesday, August 31, 2010

Biopsy & Engraftment Update

Today was definitely a less emotional day than yesterday! 

First of all, our "situation" from yesterday was addressed regarding the APN.  She was not in the group this morning during Steve's turn at rounds.  My concerns were targeted above the APN level, and I was told by the physician I spoke with that the attending would most definitely be apprised.  I left it with them.  It's difficult to step up like that, even with my personality.  It had to be done.  

Steve's WBCs are up to 0.3 today.  Late this afternoon we got preliminary results of the bone marrow biopsy.  First, some great news...NO leukemic cells were present, which is our ultimate goal, right?  Then later today Dr. Altman told Steve that Mary's stem cells were found in the sample.  Engraftment has not yet begun, everyone in the consult group feels that the (smaller) number of cells infused plus the Hereditary Spherocytosis are just making the graft take longer.  We just need to have more patience.  No talk or movement being made to harvest more cells, just hanging tight.  We have been thinking....Steve didn't talk until he was 3 1/2, didn't get tall until after high school graduation...why hurry now??

His mucositis is much better in his throat today!  He hasn't had solid food in over a week.  Had a hankerin' for watermelon (gads!) and lucky me, I found a cup of cut up melon in the 2nd floor cafe.  He chewed and swallowed 90% of it and kept it down.  When I left at 5:30, he had yet to hit the PCA pump for pain meds all day.  That is awesome.   His feet are a bit painful from the gout flare.  They are managing it with Colchicine, which he responds to very well.  Other than that, he is completely wiped out, dozing a lot, and not too alert.

Dr. Tim paid us a surprise celebrity visit, I got a big ol' bear hug from him, and we had a swell visit.  He is writing up Steve's case study to be published for other health care providers to use in the future.  Tim said that Steve's leukemia is a rare form to begin with, and, coupled with the HS, presents a "double-headed monster."  All the meat and potatoes are in the pathology, he said, and hopefully Steve's case will help someone else some day.

Since I haven't mentioned this in the blog before, his current diagnosis is ALL; however the ALL did not begin as ALL, nor did it start as CML and progress to ALL.  The genesis of his leukemia may never be known.  He is not "Philadelphia positive" either, as first thought in early May.

I did sanitize last night's blog epistle a bit, hopefully you can read most of it without wincing as much and won't be so embarrassed for my Mom.

Sue







Monday, August 30, 2010

Please Hold

....blog will be updated as soon as I get to Osco, purchase The Little Penguin, and stop swearing.  

Thank you. 

************

What a day.  First, a few housekeeping details.  You were warned about ranting in my profile.


I am mindful of the difference between slander and libel while writing this evening.  I am also mindful not everyone reading this blog enjoys or appreciates "four-lettered functionals" as my Dad called swearing.  Or at least the really good words.  Leave now if you are of the faint at heart, or squeamish about medical stuff.  And if you are squeamish, GROW UP.


However.


The next person that asks Steve "is the transplant gonna work?" is going to get their ass kicked by me, in public, with a full verbal take-down.  Would you ask an expectant parent, "what if the baby doesn't breathe after it comes out?"  Would you ask someone with a tumor, "what if they don't get it all out?"  STFU.  If that acronym is foreign to you, ask someone under the age of 25.  Thank you.

We *are* like expectant parents at due date, just waiting for engraftment instead of a screaming, gooey baby.  We know the bus is coming, and we want to get on and get to our destination.  Our minds are full of doubt and anxiety, it's not like we know ANYONE personally that has been through this.  Other blogs/message boards...well, I can't relate.  They are different people, different ages, different illnesses, different doctors, different hospitals and protocols....gawd I love saying prrrrrrotocol!  So fancy and medical and smarmy smartypants.  So we wait.  It's all about the labs.  And then Steve had rounds this morning, and it all got changed up and very confusing. 


We spoke around 11 a.m.  and he told me *they* (the Stem Cell team who is now running the show) wanted to do three things because he has yet to engraft.  Timeline:  1-3 weeks from transplant.  Today is Day +17.....tick tick tick.  

One was to give him an injection of Neupogen (our friend the synthetic hormone that was given to our donor, Mary, to stimulate white cell production), IV globulin (human "stuff" in a glass bottle that helps immunity and I *think* helps the spleen from destroying platelets....ahhhhh, THE SPLEEN RETURNETH!)...and....a bone marrow biopsy.  Seriously??  What the heck.  That was NOT on our radar.  Altman was SOOO much better to deal with, all info and "what if's" laid out, like a salad bar.  Hmmmm, might have a rash, might need dialysis, might be fine (yes...I'll take some of that)....and some Ranch Dressing and we'll take that to go home, thank you.

So I call Altman, she called back when I got to NW at 1:30, and we chatted about all THAT.  They want to see what is going on in the factory.  Hence, the biopsy. Have Mary's cells engrafted?  Or not?  If they have and are making new cells, is that effin spleen KILLING the new cells?  These things cannot be answered via a blood draw.

Options?  Yes, thank you, we have those.  The two other things (Neupogen and IVG) will be the first line....harvesting more cells from Mary is another option, and that was always in the cards, waaaaaay back, even before the harvest....and another, cutting-edge wildcard....HLA-typing our kids.  Imagine saving your own Dad's life?  I cannot. 


So, now the really ugly part of today.  And a lesson for those of you with customer service issues.  

The biopsy kit (oh yessss, you have seen the kit on this blog!  hahaha, I was chuckling, in a twisted way when I saw *it* again, thinking, yo, that's so my blog!) was waiting for Steve outside his door when I got there. TOP SHELF NURSING.  They had it all goin' on, waiting for those-who-make-more-$-got-more cred-yet-are-not-necessarily-more-on-their-game, setting up the kit ahead of time.

"Mid-level" staff entered the room.  Mid-level means higher than a nurse, and less than a doctor.  That's harsh, but an easy explanation.  It is a term used for APNs and PAs.  [Advanced Practice Nurses or Physician Assistants.]  It broke so incredibly bad from there that Steve and I only hope to erase the experience from our brains.  A bone marrow biopsy is a very, very invasive procedure.  It involves aspirating, or sucking out, "juice" and marrow (remember the tequila worm?) from the inside of the hip bone.  In pediatric cases, the sternum, or breastbone, is aspirated, God help me, I hope I never, ever have to see that....I digress. 


Steve has now had 5 bone marrow biopsies.  3 were done by our beloved Dr. Tim.  One by....I shall name him Dr. Domer.  All were done very well, not a day at the ballpark, but whatcha gotta do to get it done. 


The APN that handled this biopsy SUCKED THE BIG ONE, figuratively speaking.


Today.  Dear Lord, had this been one of my children, I would have been out of my chair and a battery charge would have been filed against me.  HOW, HOW do you complain about technique, professionalism, and common sense when someone "in charge" has a harpoon jammed into your husband's hip?  Do you say, "um, excuse me, but you are extricating the aspirate with the same movement I use to pull-start our gas lawn mower?"  

Pretty please do be kind to this man, with the broken body, who is SCREAMING AND WRITHING ON THE BED, do you NOT SEE and, more importantly, FEEL THIS?!!!  Do not sneer, "oh, I guess he didn't get any Ativan??!" when I, your reviewer and judge, just hit his PCA full of synthetic heroin mere moments before you jammed him with that wide-gauge needle?  Oh, let's just be one of the men, then, all jovial during the procedure, bare-assed towel-snapping country club locker room behavior that you think you earned with your advanced degree, and laugh and jest while he is fighting the pain, as a man, with six women in the room.  

So I did what I needed to do two hours later.  I dropped the best dime of my life.  She will never touch him again.


On a lighter note.....Steve sounded great on the phone once I got home.  Two of his WONDERFUL nurses both feel he *has* engrafted due to a  late day temp, and I feel the same because the crazy GOUT is back!  Every time he has bottomed out on his WBCs....the gout flares when his whites go back up.


On a personal note:  Thanks to Leslie and Craig, both truly shared their feelings and care with our family tonight with good words and offerings.  I am very humbled by those who reach out to our family in this time of need.  Lutherans ROCK ;-D


Sue







Sunday, August 29, 2010

Patience is a Virtue

The weekend has been a bit of a challenge for Steve, feeling like he is up against a brick wall until proof of engraftment is seen in his labs.  His WBC count went from 0.1 on Friday to 0.3 on Saturday...so....we thought maybe he was on the cusp of the process....today (Sunday) back down to 0.2.  His hemoglobin is up to 8.4 after taking a unit yesterday.  Normally he hovers in the 7-something range the day after a unit, so I, with no hard science, just logic, will say this is a sign that his body is getting a toehold and his spleen is not hemolyzing as intensely.

The mucositis....oy vey....his mouth is doing very well, recovered almost completely, the throat was still bad last night, until just after I left the hospital. When he went to swallow, he wretched.  I jumped.  Now he can swallow larger amounts of water, so he is encouraged that he can get some iced tea, smoothies, etc. down the gullet and get some calories going.  The PCA is still being used, so he is drifting in and out of being "gorked."   Glad he is doing better!!

Thanks to Kim and Dave Skala for visiting Steve with me last night and going on a smoothie run.  We just hung out and watched the (pathetic) Sox game.

I brought my Nike shoe transponder for Steve to use in his shoes.  He is looking forward to getting his walking mojo back and wants to know just how many miles he walks around the 15th floor loop.

Today is Day +16.....many, many moons ago Dr. Tim made a comment about Day +18 being "the day"....we shall see.......patience....patience....

Friday, August 27, 2010

Friday Mini-Update, Part 2

Steve had some visitors today.  His brother did bring him a smoothie and Steve did get a bit of it down his throat.  Mary and Mom Reppen also spent some time this afternoon catching up and visiting.  

He says his mouth is 80% healed, just the throat still acting up, but the Dilaudid is going via the PCA, so that pain is being managed very well.  I brought a Starbucks Black Iced Tea to the room and he thought that looked tasty.....(it's just like the kids, I get one bite.....) so I handed over the tea and he did like the taste and the coldness.  They stock ice cream cups for the patients, so I asked for some vanilla and fed him some small bites.  It melts and then goes down, so that worked!  Still no appetite.  This is temporary.

We were treated to the view of Navy Pier fireworks at 9 p.m., with a beautiful golden moon over the lake, just breathtaking.  It's so nice to have a visual diversion.

If you live in the Chicago area, you may have read a headline about the unfortunate passing of Dr. Alan Yasko, an oncology surgeon at Northwestern.  After you read the story, scroll down and read the comment from Pamela Smith.

Goodnight all. 

Day +14 Mini-Update

His throat sounds much better this morning.  After Kevin and I left last night around 8, he fell soundly asleep in the recliner chair, just not reclined.  The nurse came in to draw blood and he asked why.  She said, "I always draw at 1 a.m." ZZZZZZZZZZZZ.

The doctors on rounds told him today that they are just waiting for his labs to pop *any* moment with signs that Mary's cells are engrafting.

WBCs this morning at .1, neutrophils TLTC, hemoglobin at 7.4, and platelets at 10.  He's already had a bag of platelets this morning.  His brother was due to deliver a smoothie at any time when I spoke to him a few minutes ago.  Let's hope he is at the edge of his rally!

Thursday, August 26, 2010

The Waiting Game

Steve has had three very, very rough days since my last blog late Monday night.  I have been out of town, moving Molly back to Madison, WI and getting her settled in her dorm.  When we left the house around 1 on Tuesday, Steve was still able to swallow.  As the girls and I got on the Tollway, he texted that he wanted a smoothie.  Luckily, his brother Rich was able to leave work and get to Prentice.  That was the last thing he ate, as the mucositis did, unfortunately, travel to his throat. It has been extremely painful and swollen to the point that he could not swallow any liquids.  I feel so badly for him.  He also started a temp on Tuesday morning, the staff got on it immediately, it spiked around 101, and today was back to 98.4....then went up a bit, so precautions are still in place with antibiotics.

The hospital asked to move him again, as his room is needed for the VRE-positive, or suspected positive patients, and those people are on the north side of the north wing of the floor.  They will have their own staff that will not go in the rooms of those that test negative.  Steve is now on the south side of 15, with an east (somewhat) obstructed view of the lake.  It's so nice and bright, I just love it.  Kevin and I spent most of our visit moving him.  He has business files, a printer...and a full snack pantry.


Said hello to two "new" patients...they still have hair...as they walked.  One very young man, a PhD from Northwestern and now a professor at the University of Chicago, told me he just started bruising.  They ran labs, called him, and said, "come to the hospital tonight."  He is on Day 3 of his first chemo cycle.  Leukemia totally out of no where, which seems to be the common thread with everyone you talk to.  Another younger man, fuzzy headed, saw me in the hall a few times and we made jokes about running into each other, he with rolling IV stand in hand, trying to exercise as Steve did until this week.  I'm trying to make a point to speak to people and offer an ear, it is VERY isolating socially for both the patient and their family.

I asked about the mucositis during shift change tonight.  They said it is more a function of GvHD and not so much just the chemo.  Almost everyone does have some symptoms, and Steve has more than average, but certainly not the worst of this condition.  He doesn't have any appetite, so that's good.  He can't swallow any pills, either, yet I think they have some of those in liquid suspension form that can be squirted down his throat.  He seemed to hit the pain med button less often as the evening went on, and is remarkably lucid for someone taking such strong meds.  

His WBCs are .2 today, .1 Wednesday and Tuesday;neutrophils still TLTC.  Hemoglobin is at the magic 7.0 number.  He did get blood and platelets today.  Tomorrow is Day +14.  We are playing the waiting game for engraftment of Mary's stem cells and just have to be patient.  After FOUR MONTHS since diagnosis (this Monday), we can wait a bit longer to get where Steve needs to be.  

Signing off tonight with a few pictures of Madison from this week.  The photos are inspirational to Steve and allow him to focus on the future.

Tuesday, August 24, 2010

Betty & Bucky

This is a week of great transition for Steve's journey to recovery as well as home life.  Medically, he continues to hang out in nadir land, today's WBC's at .2, complete neutrophils remain TLTC.   Getting platelets.  He is working through two issues now.  One is his mucositis.  It's pretty intense pain and discomfort.  Open sores in his mouth and on his tongue.  His entire mouth, tongue and lips are swollen.  He can still swallow, but he feels the migration of sores heading to his throat.  We fetched a McDonald's berry smoothie tonight and he enjoyed a bit of cold refreshment.  His nurse, Mike, got him all set up with a PCA (Patient Controlled Anesthesia) pump earlier today.  This means he can control the dosing of his paid meds.  He has a cable with a push-button that he hits when the pain increases.  I believe he said the Dilaudid was increased from .2 to .3 in case any of you are into those numbers.  He seems relieved to have this set-up.  I would imagine there are years of data to back up the goodness of this science.  He is drifting in and out of sleep now, drooling and snoring his way to good health.  I admire Steve's attitude too, he told me that, "this is just one step closer to my recovery and I have to get through it."  He receives his 4th, and FINAL IV-push of Methotrexate today, as it is Day +11 (Tuesday).


The other problem is some skin "issues" that are probably GvHD related.  If I haven't already mentioned Graft-Versus-Host-Disease, now is the time.  Steve's body may or may not react to Mary's cells taking up housekeeping.  The reactions are from differences in their DNA, specifically Steve and Mary's antigens from their immune systems.  HLA matching info from Be The Match.

As Dr. Altman said, "we DO want SOME fighting."  Mary's white cells may find minuscule leukemia cells and kill them, known as "Graft-Versus-Tumor (or Leukemia) effect.  That is what we want!  People who have GvHD symptoms in the early days after transplant have a much lower incidence of relapse later.  The skin on Steve's lower legs is very sensitive to heat and touch, much like a rash or sunburn.  It's not too troublesome at this time, but he does notice some discomfort when he showers.  Google GVHD and read on your own.  It's not pretty.  Chronic and Acute types.  Discuss.


He is concerned he will become a junkie.  Right now he doesn't care.  Brett Favre kicked his habit.   I told him that we might be able to share a room at The Betty Ford Clinic.  My addictions are Solitaire with a splash of Little Penguin Chardonnay.





Did you know Betty Ford is 92 and quite alive?  See what being open about addiction can do to extend your life?  My only beef with Betty is that she married a University of Michigan guy, but he was an Eagle Scout, and he was also a trophy husband.  So we good.

Kevin went back to school today, an 8th grader, WOW.  Molly returns to Madison on Wednesday.  It was a difficult goodbye tonight for all.


Today, Steve got the best Get Well card EVAHHHHHHHHH!!!!  When you say Wisconsin, you've said it all!!



Sunday, August 22, 2010

Picture Says it All

Sunday's update will be posted tomorrow.  Enjoy this picture of dad and son tonight!

Saturday, August 21, 2010

Day +8, Managing the Pain

Meg, Molly, and I got to the hospital around 6:30 tonight.  I made my Grandma's Banana Cake for the nursing staff.  Nothing perks up ears faster than saying, "homemade buttercream frosting."  Steve had requested The $5 Dish again, so after taking a hit of Dilaudid, he was able to eat two portions of casserole.  The drug works wonders.  They told him if his mucositis gets worse, he can transition to a PCA pump and take a hit every 15 minutes.  We are all hoping that doesn't happen, but are prepared to manage the situation if it arises.

He wasn't up to his marathon walking today or yesterday, but he is on his laptop and was watching the Brewers play on MLB.com.  His attitude is good, and he enjoyed looking at activity in the Streeterville neighborhood tonight, including a beautiful wedding and reception at the Museum of Contemporary Art, which is directly across the street from Prentice.  I need to bring better binoculars ;-)

Megan's turn in the locker tonight!

Great Care, Great Drugs!

We spent dinnertime and last evening at the hospital with Steve.  His mouth was really hurting, he was somewhat hungry, and had not asked for pain relief.  That changed when I got there!  Northwestern has handled his care SO well throughout this ordeal.  After he ate some food, he asked his nurse what type of meds had been written for the mouth pain.  Dilaudid....now THAT does the trick!  He is on a very low dosage, and can take it every two hours.

He ate some mashed potatoes, sweet potatoes, and mac n cheese.  Slept exceptionally well last night (ya think?!  Add an Ativan chaser, and BAM) and was in great form this morning.  

He took a unit of red blood yesterday, so his hemoglobin is in the 7's...WBCs at .2, absolute neutrophils TLTC, and platelets at 8, so they gave him a bag this morning.

I can't say enough good things about the nurses on that floor.  This is his 7th inpatient stay, and the first time he has had male nurses, then three different men in a row.  Hmmmmmm.  HA.


Have a great weekend!

 

Friday, August 20, 2010

A Few Blog Housekeeping Details

I modified my blog settings to allow anyone to post without having an account.  It was frustrating me to hear of people that wanted to post and couldn't figure it out.

Please bear in mind that I have the blog set to preview and approve all comments before they publish.  The blog is open world-wide, and this allows me to delete the ding-dongs.  There may be a delay from the time you comment until the time it posts.  

A Bit of a Storm Brewing...

Steve was relocated to yet another room late yesterday (Thursday), this time not by choice.  It was rather timely that I wrote about sterile precautions in my last blog.  There is a change in protocol evolving on his floor.  They are going to cluster those who have, or may have MRSA or VRE in adjacent rooms away from the otherwise healthy population.  Steve was moved further away from this cluster.

Two days ago his mouth started getting sore.  He says it feels swollen.  Last night it disturbed his sleep, along with the usual barging in of staff for vitals, etc.  This morning he likened it to getting punched in the face.  He gets four IV-push injections of Methotrexate post-transplant.  This chemo agent usually causes mucositis.  He had his third dose yesterday, so this was to be expected but not welcome!  

Here is the definition of mucositis.  Please keep Steve in your thoughts and prayers again as he battles this major hurdle, and to those of us keeping him nourished any way we can!

Wednesday, August 18, 2010

Please Wash Your Hands, And More!

My friend Karen brought up a good topic today, and I was just about to blog about this very thing, as I took a photo last night to add to the topic.   She was curious about Steve not having any immune system yet having visitors.

He is on a special floor in the hospital that has immunosuppressed patients. No latex balloons or live plants are allowed. Both wings are negative air pressure environments; visitors have to pass through two sets of double doors where the pressure is equalized from outside to inside.  They use special HVAC filters that remove allergens and other fine particulates in the air.


A hand-washing station is located between those sets. He is tested for VRE at admit and once weekly. Until a patient tests negative for VRE (and I think MRSA too, not sure), staff entering his room must mask, gown and glove. Once they determine the patient is negative, no one needs to do that anymore.

The huge issue is visitors, and the staff has cheerfully informed us they are experts at tossing the ignorant out to the curb! 80% of all germs are passed from hands.  Masks are available throughout the hospital in kiosks, as well as anti-bacterial wipes and gel dispensers.  He has two sinks in his room as well, and there are public washrooms conveniently located on the floor.

They will put food brought from home or from a restaurant in a floor fridge if it does not go in his room at arrival; further, if he has leftovers, they cannot go from his room to the fridge as it could cross-contaminate to other patients food.

Now, errrrrbody wash their hands and have a nice day!


 



A Well-Intended PSA from the CDC & Me

Everyone 6 months and older should get a flu vaccine as soon as vaccine is available this fall. While flu is unpredictable, it’s likely that 2009 H1N1 viruses and regular seasonal viruses will cause illness in the U.S. this flu season. The 2010-2011 flu vaccine will protect against three different flu viruses: an H3N2 virus, an influenza B virus and the H1N1 virus that caused so much illness last season.

One-stop shopping this year.  Get the shot.....and be done with it!

Excuses?  Please see me and we will get your azz whoopin' over now so that you can heal and get your shot asap.  



Tuesday, August 17, 2010

Musical Rooms

****BLOGGING LIVE FROM STREETERVILLE!!!!****

(That felt very grand and techie.)

I may not be updating daily as Steve is at a point where he is just coasting along, nothing to really report that is exciting or overly dramatic.  Which is good, right?

Today he is Day +4 and feels really well.  We learned a new acronym yesterday, "TLTC."  It is not a cable station.  It means "too low to count" in lab-speak.  His last cycle of chemo was "considered a "full" or "myeloblative" transplant and is intended to combat your disease as well as empty out your bone marrow and bring down your immune system.  The chemo will destroy your current cellular activity to allow your donor's cells to find their way to your bone marrow and begin a new immune system."


TLTC is a sign his cells are at zilch before Mary's stem cells take up housekeeping and start reproducing new cells. His hemoglobin actually went up a smidge.  Yesterday he was 7.3, today 7.4.  His WBC yesterday hit .5; his absolute neutrophils (the "fighting soldiers" component of white blood cells) are TLTC, so he is Mr. Neutropenia again.  We are getting into a groove with that diet, and not as paranoid as the first time or two he was on restrictions.  Platelets are at 48 for those of you who follow that "stuff."  He gets transfused when platelets get below 10.  No signs (gratefully!!) of mucositis. He continues to eat extremely well and eats a LOT.  Tonight I brought a home-cooked dinner from Kim Skala (thanks again!!) and it put a smile on his face.  Walking a LOT, and quickly.  Still annoyed at the fellow floor members "dressing like sick people."
He had requested (remember, the family was nagging Steve) a new room and today the request was fulfilled.  FABULOUS north view of the Chicago skyline.  This is the first time in 7 inpatient admissions that we have had this view, and I love it! 
 

Sunday, August 15, 2010

Social Sunday

I did not venture downtown today to see Steve, yet he had quite a social Sunday.  His Mom, sister Mary, brother Rich, and niece Erin all stopped by and fed him, which makes Steve very, very happy.  How the man can eat a Jimmy John's sandwich after he hurled one up on Friday is beyond me.  


His lab numbers continue to impress.  His WBCs are trending down (.7) and his hemoglobin is hangin' in the mid-7's.  He should bottom out in the next day or two on his white count (nadir), stay there for a while, then start the climb back up with Mary's stem cells producing new white cells.


Steve has been socializing with some of his dorm friends and has been scoping out empty rooms.  Per our collective nagging efforts, he has put in a request for a brighter room or one with a better view.  I think that will break up his time and will provide a more cheery atmosphere.  I will admit to trying to watch the Air and Water Show from the hall, not realizing what an awesome view the north rooms have, goodness!!  

He is comparing notes with other transplant patients.   I imagine it's like the medical version of Hogan's Heroes.  "Hey, Klink, when did they say YOU could go home?"  "I hear dare are tranzzplahnt people on dis floor who do NOT haf kahn-ser, day are getting trahnsplahnts for *other* tings...."  Okay, now I'm really nosy if there are "other" things being cured other than blood cancers on that floor, so I will follow up myself!
By the way, all chemotherapy at Northwestern is done in the Prentice building.  Cancer patients may be anywhere, but chemotherapy is only done in Prentice.  


Another thing that I find fascinating are the many checks and balances in place regarding patient safety.  (Hopefully) many of you are blood donors.  Again, I thank all donors of any kind from the bottom of my heart.  Steve has lost count of how many gallons he has received since April 30.  O- people, keep giving even though he is going to be blood type A soon, as Mary is A.  Steve has a 3-letter code assigned to him that is on his wristband.  Only Steve and the blood center have this code.  The blood is tubed up (like at the drive-though teller!) in a code-locked bag.  The nurse has to ask Steve for the combination in order to get the blood out of the transport bag.  This way, only the blood that is meant for him gets to him.  An additional nurse has to be present, one reads the information from Steve's wrist band, like birth date and patient number, the other nurse validates the information from a printout that travels with the blood.  It's pretty cool and kind of Mission Impossible-ish.  At least when Peter Graves was the star.






And finally, the badge of honor and courage on the stem cell floor.  If you see this celebration card on a door, it means the patient in that room has received their cells and is on the road to recovery!  It's Steve's turn :-D

Saturday, August 14, 2010

Day One

Great day for Steve.  He said he felt as good this morning as yesterday morning before the transplant.  He has walked a lot today.  His hemoglobin went down to 7.4, so they hung some reds ahead of the curve, they are back to giving him two half units at a time, so as to not overwhelm him with fluids and risk stirring up that spleen.  He also gets Lasix after each unit, so that keeps him occupied ;-)

They tweaked the dosage strength of one anti-rejection drug.  Felt it was too strong and that he could develop a headache at that level, so it's nice to know they are proactive and looking out for side-effects.

It's driving him NUTS to see the other patients wearing a hospital gown or pajamas, or....heaven help us, a ROBE.  He feels they would all feel better if they wore street clothes.  My personal favorite is a tall man I saw in the hall yesterday.  He was sporting a green hospital gown with black dress pants and black shoes.  

Blessed are the brief.  Goodnight.

Friday, August 13, 2010

Over the Transplant Mountain!

We have waited an eternity for this day.  So much went exactly as it was explained to us verbally and/or in writing.  Other things you just had to experience.  A hot, humid, but beautiful day.  The Chicago Air & Water Show is this weekend, and we could see fighter jets scrambling in the air as we approached the hospital.  

Arrived in Steve's room around 1:30, with transplant time scheduled for 2.  Two nurses today, one more senior in tenure at NW, and one (a Badger!) learning the intricacies of the stem cell transplant process.  Our Advanced Practice Nurse, Paula, stopped in during the transplant.  


I was not expecting so much activity.  Both nurses were busy setting up the IV stands/pumps, double-decker style.   He ate his Jimmy John sandwich while Nurse Kelly injected his pre-meds into his PICC line.  I am talking some serious amounts of drugs, people.  Ativan, Benedryl, Zofran.....it took both of her hands to carry all the empty syringes to the garbage.  Hanging were anti-rejection drugs and hydration fluids.  Steve's vital signs were watched extremely closely, especially at the very beginning of the transplant.  




At 1:58 one of the hospital chaplains arrived, a seminary intern, and we spoke for a few moments with him.  At exactly 2:00, Mary's cells arrived.  I was not prepared for what that looked like.  It was a whole heapin' bit of science on a blue cart.  The cells are stored, frozen in a liquid nitrogen environment, until needed for transplant.  The lid came off....it was magical!!!!  All that fun smoke, like a wizard should pop out and cast a good spell.  The technician removed a metal case around each bag of frozen cells; the case would remind you of a thick CD jewel box.  

 

The cells were thawed to room temperature, and then to body temperature.  There were three full bags and one partial bag of stem cells.  We were told about 4.5 million stem cells in all.  And yes, it does look like tomato juice!  The bags are very small and thin.





So, here is all THIS STUFF, all this cutting-edge medicine and healing, and in contrast, this young man who is going to pray with us, strangers, while Mary's cells give life back to her brother.  It was completely overwhelming to think about all THAT with my head down.  Steve was very brave, but very scared.  The first bag of cells was given a blessing....the line clip was unlocked, and off they went to their new home!  Nurse Elena called us to come and watch the cells run through the tubing toward Steve's arm.  Pretty cool stuff, and very humbling.


Things were going pretty well until the preservative used in the cell solution had a reaction with Steve's stomach.  Bad news:  Didn't really ever own that sandwich, just borrowed it for a while.  Good news:  At least he didn't yack on an empty stomach.  The staff added some Compazine to the mix, we wiped down his face, and the transplant went on.  He had some face flushing side-effects too, and those are quite common from what we are told, also attributed to the preservative.  As the last bag was hanging, the narcotics kicked in, and Steve was drifting off.  He got a fierce case of the chills, and somehow I thought to ask Nurse Kelly if they still had the blanket warmer on that floor.  That was a stroke of genius, I must say!  She scurried off and warmed two big blankets.  Steve was soon ZZZZZZZZZZZ and the transplant was done.  All told it was 1 hour and 20 minutes.  (3:30 p.m.)


He slept soundly until about 6 p.m. when his eyes popped open, he got up (what?) and went to the washroom.  Got back in bed and decided he was hungry!  That was mind-boggling to me.  He is already joking about asking Dr. Altman about going home.  Hopefully, I miss that conversation.  He ate some fruit, had some water, and we tucked him in for the night on the couchbed.  As you can see from the picture, he refuses to wear a hospital gown or pajamas, and no one really cares!


The next week could be a challenge.  We play a dual-edged waiting game.  Hoping the cells find their new homes and engraft and multiply, and hoping Mary's cells don't reject Steve's body and produce any Graft-Versus-Host-Disease.  One day at a time.


Thank you to everyone for your support.  We aren't out of the woods yet, but we have certainly battled some of the biggest challenges and come out on top.

 

Mid-Day ~ Day Zeeeerowwww

Steve has been up and about this morning, looking forward to the transplant this afternoon.  Walking, working out on the bike, and hanging out in the lounge.  His hemoglobin went up to 8.8 without having any red cells hung since Wednesday, which is good and also interesting.  He was told during rounds that he can expect to be "pretty much out of it" for the next few days; there is some component of the stem cell "recipe" that will keep him down, as well as the anti-rejection drugs.  Northwestern told us in advance of this face-plant, so we are glad to know it's normal.

He is also... WHAT?...growing some sort of facial hair design.  Not quite a Fu, not quite an old school Tom Selleck....but a rather fancy thang.  It's bugging him, so I've been summoned to fetch the razor.  I'll bring the electric one since his platelets will be very low, and platelets are involved in clotting.  I would hate to see this headline:  "Man dies from shaving after surviving leukemia and stem cell transplant!"  He also wants a Jimmy John's #4, no sprouts, and a plum.  If I can get a picture without starting World War 3, I'll do it!! 

Good Morrrrrrrrrrrrrrrrrrrrning!

Long night for Steve, many interruptions....beeping IVs, nurse visits, he's pretty tired.  We are going to play today by ear, will post once I get some solid information.  Both of our Wisconsin flags are out today, the Motion W and our Bucky flag!  Did you know our house is red and white?

'Twas the Night Before Transplant....

when all through the house
not a creature was stirring,
'cause I just drugged the dog


Hey!  It was prescription meds, his allergies are buggin' him, don't judge!  I can't believe I haven't mentioned our Lab Cooper yet!  When we got in the door tonight, my hands hadn't yet been washed, so I grabbed his muzzle and let him get a good drag of Steve's scent, along with "where's Dad??"  Coop, always the family man, wagged his tail in glee to have a quick sniff of Steve.


Kevin and I spent a very nice, long evening downtown.  Arrived around 6, left very late at 10:30.  Kev is just now getting comfortable visiting the hospital.  This has been really, really rough on him.  He likes the independence of going by himself to the 2nd floor market, my AmEx card in hand, and buying treats for Dad.  I love having him fetch me an iced tea too, won't lie.  Steve, to quote Molly, is "eating like a fat kid."  (Apologies to my zaftig friends.) He ate a HUGE twice-baked potato tonight, along with various baked goods.  For lunch he ate a Jimmy John's sub, bag of chips, and I believe some cookies.  His taste buds are still with him, at least for now.  By the way, he ordered in the Jimmy John's.  


Steve walked and rode the bike today.  He is still on the Klonopin, and I feel the beginning of his chemo crash has started.  He did smile while talking about the hottie night nurse, so that part of his brain is not affected by the narcotics.  


We will know for sure in the early morning on Friday just when Mary's cells will go up and Steve will have a second chance at life!!  I will attempt to blog during the day as I can, it is supposed to be incredibly dull and anti-climatic after all he has been through.  


And I heard him exclaim
As we drove out of sight
A New Birthday for me
And a healthy new life!!


Wednesday, August 11, 2010

Please Stay Tuned, We'll Be Right Back

No big update tonight, as this author had a much-needed night off.  Steve continues to do well, and is to begin anti-rejection IV therapy tomorrow.
Tomorrow is Day -1 !!

Note to Rob S:  Steve is thinking of starting a scrapbook of the local talent.

Steve as Overachiever

Dr. Altman told Steve this morning that he got through chemo "exceptionally well!"  She feels he doesn't need red blood until his hemoglobin is at or less than 7.0, not 8.0...so he will get some reds today as he has trended down to 7.

He was jogging in the hall just to see if he could do it.  Hmmm, a rolling IV stand, no muscle tone, and flat feet....glad I missed that visual.  The only time I can remember Steve running is when he realized the Packers game had already started and the t.v. wasn't on yet.

He feels great, got his buzz on.  Will check in later.  

Tuesday, August 10, 2010

Chemo is DONE!

Late one tonight, we left the hospital after 9:30 and went a bit early.  Steve was missing when we got there, yet had been in his room when we were at Monroe & Columbus..???...after a complete search of two floors and all the bathrooms and lounges, he arrived in a wheelchair from another floor.  Guess the CPT didn't retake his temp in the middle of last night and it was a 100.3, so Dr. Altman ordered blood cultures, etc. drawn plus a chest x-ray just to be extremely careful he wasn't starting down the path to infection.  They had just given him the Klonopin before the elevator ride, so he was stoned and green in the gills when he got to the room.  I buzzed the nurse for a hit of Zofran, and she informed me he had not had ANY anti-nausea drugs since Friday.....she could bring Ativan or Compazine, as she had written orders for those drugs.   I politely said no, please do ring the docs and ask for Zofran.  These things we know!!  :-)  Our nurse was there in a very short amount of time with the Zofran, and Steve's tummy was almost 100% within moments.  Best part?  Now he can get a dose the next time he needs it and the order will already be on file.  He's pretty gooped up on the Klonopin and isn't able to advocate for himself with his usual mental acuity.  His temp is fine, it was 98.5.


Ran to Panera and brought back food, so we were able to eat as a family, except for Meg, who was working.  Steve is SO relieved to be done with the BuFlu regimen.  We confirmed with the nurse that he IS done, and that the next 2 days are just on chill.  He will continue to take the Klonopin as the chemo must make it's way out of his system, and will keep seizures and nausea away.


The kids and I had an opportunity to meet Dr. Mehta (King of the Stem Cells) tonight, I recognized him from online stalking and introduced myself.  He was very pleasant and easy to talk to.


Dr. Altman paid Steve a visit this morning, she was very encouraging and told him again how wonderful he looks.  The best part of Steve's day was a surprise visit by our old buddy, Dr. Tim Huyck, the heme/onco fellow.  Tim is in his 3rd year of the fellowship, and is no longer on service (rounds) in the hospital.  He is doing research at this time, but has been following Steve's labs and progress.  He made a special trip to Prentice to wish Steve well and to tell him how great he is doing in his process.


His labs are on their way down....not neutropenic yet, WBCs at 1.7,  hemoglobin is hanging in there pretty well at 7.8.  All good, and all according to plan.


Tonight was Kevin's turn to get stuffed in the locker.

Monday, August 9, 2010

Quiet Night

Steve is slowing down a bit more in energy tonight, doing really, really well, just extremely tired.  He ate a good dinner from the 2nd Floor market and was in good spirits.  How he loves to listen to the Brewers games on his MLB.com app!  He was also happy to have received his free iPhone case in the mail today.  Kevin and Molly were my co-pilots tonight.

Tomorrow is the last of his induction chemo, and he is thrilled!  Vital signs are strong, and he is sleeping like a baby.  Of course, he's pretty stoned.

Tonight's pictures:  The patient lounge (faces east) that has the stationary bike, flat screen, and two computer terminals, along with books and magazines.  And I had to take a picture of this cute IV bag!  Seriously, when you spend this much time visiting someone in the hospital, nothing looks cute!

We were pleased to see the aforementioned "Bossy Nurse" back on our floor, she made a special stop in Steve's room to say hi and to let him know she would sure be checking on him and bossing him around!  She is the BEST!  She is also aware and thankful that I am the one making baked goodies for the nurses.  NEVER hurts to get brownie points, pun intended!


Tomorrow is Day -3!!

You Look Mahhhvelous!

Steve enjoyed another great night of rest.  He was able to get some paperwork done this morning before taking the Klonopin, and his appetite remains good!  He had coffeecake and a plum.  We are grateful for each day he is eating and mobile.  The stem cell team told him during rounds that "everything is going to plan....you look great!!"  He also showered, which is quite a feat with a rolling IV stand.  He has to keep his lumens and dressing site dry on his upper left arm, so we packed a roll of Saran Wrap, which works like a charm with surgical tape.

I would like to offer some tech support for those of you who would like to comment the posts:  You do need to create an account in order to "follow" or comment.  I suggest a Google account.  Check out the link, it's really no big deal, you can simply use your existing e-mail address.

https://www.google.com/accounts/NewAccount?continue=http%3A%2F%2Fwww.google.com%2F&hl=en

Sunday, August 8, 2010

A Lolla of a Weekend

Getting to Northwestern Memorial can be challenging as far as traffic is concerned.  As if rush hour and summer holiday weekends aren't bad enough, Steve has managed to be in the hospital for Taste of Chicago, the Blackhawks victory parade (2 million??) and now Lollapalooza!  Have to give some big credit to the City of Chicago and the CPD for keeping our path clear.

Steve is half-way through his conditioning chemo and is doing really well today.  His Mom and sister visited, as did Megan, boyfriend Matt, and Kevin.  Molly and I took dinner duty, and brought him home cooked "Salsa Chicken" and squash.  He walked 20 minutes this morning and did another 20 minutes of cycling in the lounge.  He ate a great dinner and slept well last night.  The nurses are managing his care exceptionally well, and do their best to let him sleep, undisturbed, through the night unless they need vitals, etc.

Today they posted a chart on his door that will track his lab results from where they are now, through his (down trend) nadiring, then back up as Mary's cells engraft.  We love charts!

If you visit or phone, you may notice that the quality of your visit depends on where he is with his Klonopin dosage, it has quite a narcotic effect.  2 days down, 2 to go, then 2 days of rest...getting closer!

Saturday, August 7, 2010

Blue Flu? Bufu? BuFlu, ah...Gesundheit!

I am so pleased to report that Steve weathered the first of four days of consolidation IV chemo extremely well.  He is on the "BuFlu" regimen of  IV Busulfan and Fludarabine.  Our friend Klonopin is keeping both nausea and seizures at bay, and we are thankful.

He had three helpings of home-cooked dinner, an old family recipe on the Reppen side, Five Dollar Dish, and he inhaled it.  Had a plum for dessert and called it a night.

The Klonopin is x3 daily; when it wears off he straps on the shoes and spins the halls to keep active.  His spirits are very good, and Molly and I enjoyed our time with him tonight.  We also know that he will start a decline in energy and mojo....face plant, out of it, zonk time is Day +6 to +9,  yet I think he will write his own rules and rally sooner.

Pic taken when no one was looking at the hospital.  There is a remote section of the floor with family lockers and a washroom.  Good night all.

~sr





Medical Math

The transplant process is referred to by minus (-) and plus (+) days from the days (before or after) Mary's stem cells are infused.  Infusion day is Day 0 (zero).  

Yesterday was Day -7, today is -6.  Certain benchmarks are referred to in the future by these +Days, for example:  "We may start weaning you off the anti-rejection drugs around Day +X."

This is some fun math we learned today, kiddies:

Steve + Klonopin = 





 

Friday, August 6, 2010

Showtime!

It's been a long day.

Steve and I both slept well last night, then loaded up the Expedition with Steve's gear for his month-long stay.  Laura D, I guarantee your gifts are part of his "7-Eleven."  Thank goodness it's out of my reach, too much caloric temptation in the house.  Molly was our wingman today.

We got to Prentice at 8:30; at 9:30 we paged the Stem Cell Coordinator from the lobby to let them know we had waited an hour, which was fine with us, but not with the hospital.  Steve was savoring his last few moments of freedom.  Within moments someone from Patient Services swooped down and escorted us to the 15th floor.  Steve pushed his cart, which I gotta tell you, got a LOT of second looks in the lobby.  We will bring a printer and hopefully a contraband fridge in the near future.

He has the icky room of the floor.  We had to laugh, this is his 7th inpatient admission, so we had heard about the "one room on the floor with one teeeeny window."  Actually, we like the room, it's completely removed from the nurse's station, with all it's noise and activity.  The floor is completely full, so it is fine for now, although I do miss the wonderful lake and park views.  You can see the new Children's Memorial Hospital under construction from Steve's room; it is going to be spectacular.  A nice rooftop garden is below him, and a west exposure.


The stem cell transplant requires three "lines," so Steve had a third jumper cable (lumen) added to his double lines late this afternoon.  Life is much easier with a PICC, and he has grown accustomed to living with one.  This is how Mary's cells will be infused into Steve's body! Isn't that amazing? http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter
The staff is giving him a few units of red cells tonight to get his hemoglobin up.  It was at 8.0, which is good for him; chemo eats up reds and platelets, so it's just part of the process.  Our advanced practice nurse feels that since his first 3 cycles of chemo went without complications that he may sail through this last pre-transplant round easier than someone that had struggled with earlier regimens.  That was encouraging news.  Still one day at a time!

Megan and Kevin went to see him this evening, so the kids feel better once they see Dad settled in and comfortable.  We are all pros at navigating Streeterville, the Dan Ryan, and I-55!


I am going to share a few photos here to show you how much better he looked today versus the day of diagnosis, April 30.  He was very ill in April.  When you look back in time, you can see changes in his appearance.  He was up to 220 pounds two years ago.  He has been as low as 162 since April, and today was up to 171.  All things considered, I think he looks GREAT!  


That's all for tonight, keep him in your prayers and thoughts along with others in need.  ~sr
4/10 Just before the news...
8/10




















5/08
5/09