Two Thousand Ten, Don't Do It Again

Bob, Mary, Steve, & Peter ~ Thanksgiving 2010

We're still here, alive and kickin' it on the southsiiiiiide of Chi city.  Well, maybe not high kicks just yet.  We are taking life one day at a time, our new normal.  Some days are "good" and you can feel a forward vibe.  On those days,  Steve scurries to do office work, drive to the bank, and rides the waves of energy.  Other days we have given the moniker "reset days."  We refuse to call them bad days.  He feels his recovery is much like a series of plateaus (forgive moi, plateaux?); long, rather uneventful days on end, one up just a tad improved from the former level.  The Big Three at our house are not Ford, GM and Chrysler...rather red cells, white cells, and platelets.  We have been told flat out that many of the lab results and trends have no explanation as his case is both rare and complex.  So we wait and watch, avoiding infection, our biggest and most dire threat.  Tonight I am writing under The Reppen Homeland Security Orange Warning, he has an abscess in his mouth and he is gulping down big doses of.....PENICILLIN!  Imagine!  Let's hope this passes quickly.  We have been extremely fortunate since his first chemo in May.  90% of the infection battle is getting ahead of, not behind, the 8 ball.   Steve Jobs, thank you for the incredible iPhone 4, what a lovely, sharp picture can be taken of the inside of your mouth, e-mailed to the hospital, and then to your doctor on holiday in the Middle East.  I wouldn't be surprised if Dr. Altman called from Israel to follow up on her star pupil.

We just received a preliminary report on Steve's (7th!) bone marrow biopsy from 12/22 and are thrilled to tell you that he is still FREE of any leukemic cells.  It appears his cellular activity has also picked up a bit, so when Dr. Altman returns I'm sure we will get the full scoop, along with the other high-level test results.

We go to clinic for checkups every OTHER week now, a big step in recovery.  They draw his blood first, checking for Tacrolimus/Prograf levels that are SO key to anti-rejection.  As you recover, the Tacro levels are reduced.  Since I last blogged, Steve's Tacro has been reduced markedly.  Reduce, check for GVHD symptoms....check, reduce...check, no change.....check, reduce......and so the game goes.  His only GVHD symptom is mouth soreness, upper mouth behind his front teeth.  He feels discomfort and mild pain when biting down or chewing, much like a sinus infection.  HMMMMM say the nurses and Dr. Altman.  Not mucositis...just a Steve thing.  Interesting.....they say.  Neil Armstrong stepping onto the Moon was interesting, this is a pain in the ass.

His weight went up a wee bit this last visit, a bulky 154 pounds.  I am feeding him ANYthing he wants, especially ice cream.  Tonight for dinner he had a sweet potato and butter, ice cream, and some Kraft Mac 'n' Cheese.  And then more ice cream.  

He receives blood on a regular basis at Christ Hospital, or, in a pinch, at Northwestern.  He can go about a week to ten days without needing a transfusion.  His threshold is a hemoglobin value of 6.8.  Any lower than that requires blood.  Yesterday he was 7.2.  We have a weekly "fill-up" appointment at Christ in case we need it.  They have been extremely accommodating to us and they have a blanket warmer, Steve gets some serious ZZZZZsssss there and loves the attention!

Platelets (ahhhh, remember "Bleeding Out, The Movie?"  Sue, he could have "an event" like a stroke or friggin heart attack, please do come directly to the ED should that happen, and enjoy the rest of your day at Great America, thankyousomuch) are a rrrrrrrrrrrrrrowBUST NINETY THREE, as in, take that damn spleen out and run into the end zone for a Lambeau Leap.  Spleen, The Sequel, is coming to an operating theatre near you in January....I *think,* and he is resolved to this next step.

Our biggest challenge right now is his white cell count.  Since last posting, his white cells have steadily declined.  White cells fight infection.  The professionals are not concerned.  I am.  He is neutropenic again, with a WBC count of 0.9 and absolute neutrophils of 200.  That stinks.  He is at risk, so no crowds.  We have left him home from events with large amounts of people, yet he did go to Costco on Christmas Eve for some shopping (see pic!).  This is really hard emotionally for the kids and I, as he seems "better" but we don't dare expose him to the flying phlegm show of holiday sickness and dumbassness of people who go out in public with illnesses.  You have to live your life, how much can he be cloistered and get well in spirit? 

Everybody, WASH YOUR HANDS!  Did you know that 80% of all illnesses are spread by hand contagion?  Yep.  Wash your damn hands, I don't care if you "haven't touched anything" or "aren't sick" or "I washed them at home."  Seriously???  And do this for everyone, everywhere.  Thank you.  And get a damn flu shot and shut up about it.  And thank you again.  And ORANGE is OUR ribbon color, stop with all the damn pink year-round.  And Chuck Martin, if you are reading this, I am all about Colorectal Cancer in March with you and your homies.  :-D    Thanks for supporting this paragraph of ranting. 

So I bring to you some fun fam pictures.  You can see that Steve's hair is growing back very nicely.  Compare Thanksgiving versus 12/25's picture.  Mary was Steve's donor (Happy Birthday today, Mary!) and we were SO happy to get a great photo of Steve with his life saving sister.  What better Christmas gift than the gift of life to a sibling?

Mary, Steve, Mom Reppen

Christmas 2010, My Wonderful Family

Most days, Dad n Dog napping

Digging for Deals at Kohl's

Fuzzy Wuzzy

Hello everyone, it's been a few weeks since I've checked in, and it's comforting to know that some of you are watching for an update.  Steve's health has been pretty uneventful, which is both good and frustrating.  We are glad he is not regressing, but wish his labs would shift from neutral to drive.  Check out the hair!!  ------->>>>

Exceptionally great news is that his bone marrow biopsy results showed NO evidence of leukemic cells.  With the exception of his very first, diagnostic biopsy, all have been clear.  The biospy is like "looking into the factory."  Dr. Altman said his cellular activity is "splotchy," yet doing well.  Results also showed that 98% of the new cells being created are from Mary's stem cells; target is 95% or more, so more very good news.

His weight is back down to 160; lost 2 pounds each of the past two weeks.  Appetite is...meh.  He is sleeping well and trying to fight the urge to nap either at all or as much.  Preferred nap location is now a comfy chair and ottoman in the family room, that way he doesn't get in too deep of a sleep pattern and just drifts in and out.  He isn't sweating anymore when he eats, that was very strange but not unusual in someone who hadn't been eating solid food week after week.   

Dr. Altman lowered two key things:  One, the hemoglobin number we use to determine transfusions.  It is now 6.8.  He is going about once a week for blood.  It used to be that a unit of reds would perk him up and he would feel the difference.  Now, not so much, and often the day after blood isn't a very good day.  The second thing lowered was his anti-rejection drug, Tacrolimus.  This will eventually be eliminated.  The drug helps keep GVHD symptoms at bay.  He no longer has the mild skin rash but instead has some mouth/gum discomfort behind his upper front teeth.  Pain meds knock that out pretty well.  Potassium and magnesium absorb through food for the new cells, and so pills and/or IV fluids help the new cells get up to speed.  The potassium pills are huge and have been totally eliminated, a giant hooray.  Magnesium is improving, and we have been supplementing the pills with 500ml magnesium IV riders, they are shooter-sized and go up over 2 hours, which is manageable.    The iron chelator, Exjade, arrives from the specialty pharmacy on the 30th.  

So here's the scoop:  Steve's case is complex due to the Hereditary Spherocytosis.  We have always had options since transplant, and the one often taken is the wait and see decision.  Some of the questions that arise may or may not have answers.  His platelet count has gone WAY up, at one point this week they were at 110.  Again, remember 5 not too long ago?  That is great.  Hemoglobin has run from 5.6 to 8.1 (AFTER 2 bags of reds)....and his white count is bouncing up and down, "normal"...but was at 1.3 today, so he's borderline neutropenic again with his absolute neutrophils teetering around 500-700.  Frustrating.  Dr. Altman pointed out that one factor we *may* be dealing with regarding his hemoglobin is that Mary's DNA is creating spherocytes, as she also has the marker.  So Steve's spleen is recognizing HER/his new red cells as "wrong" and may be sequestering them.  I wasn't blogging back during tissue typing.  When using a sibling donor, they look at 6 major antigen proteins and hope to match all 6 for a perfect match, one that will produce the best transplant results and fewest graft-versus-host complications.  Of the five adult children, four have the HS marker.  Mary was the only perfect match, and she has HS.

Dr. Altman *thinks* Steve will never feel 100% better until the organ is removed.   I plan to press forward with a surgical consultation and have Dr. Altman arrange that in fairly short order.  Steve was NOT open to that several weeks ago.  We need to get him better to avoid being taken down by a cold, flu or other common malady that would weather much better in a healthier person.  He got his flu shot and we hope anyone that visits does the same.  

We have this week off from clinic, and will host Thanksgiving here next Saturday.  I'm pooped and not feeling very humorous tonight, thanks for checking in on us!

When Irish Eyes Are Aspirating...

Ask, and ye shall receive!  Late yesterday a NW scheduler phoned that Dr. John Galvin offered to perform Steve's bone marrow biopsy.  He may have been coerced.  Regardless, it was show time, and Steve was apprehensive last evening.  Dr. Tim Huyck had done 3 of them, Galvin 1, and The Jerk did one.  Steve hadn't napped the past two days, feeling that by stretching himself energy-wise, he might improve the quality and consistency of his sleep.  It is not unusual for him to fall asleep at 10, sleep well until 1, then lie awake until 5 or 6 a.m...then passes out again, gets into a deep sleep and wakes up in a fog.  The past two weeks he had not improved in lab numbers, more like a holding pattern over O'Hare during a storm.  You are hoping the storm passes and you can land safely, but there is always a chance of diversion.  We don't want to land at Mitchell.

He had a rough evening Tuesday, very emotional, very down, gaunt, and tired.  All of a sudden he looked at me, and said, "you know what?  I think I feel a lot better all of a sudden."  (Be creeped out.)  He went to bed and had the best night's sleep in months!  He was rather chipper this morning, was PLEASANT, almost happy (okay, let's not get carried away) and we grabbed a McD breakfast on the way to the clinic.

Here's one of those things that hits me every week.  I look at this sign and try to imagine how much worse it could be, and I try to be grateful for an illness that has a hope for cure and physicians and nurses that are working toward that goal.  Steve has never needed surgery for his cancer.  I have seen people on the 21st Floor in Galter that are beyond description.  Twisted, deformed, pasty-skinned people that look just like Nazi concentration camp prisoners, but these images are in color today.

Steve and I walked in to see Dr. Galvin waiting in the hall.  He is "black Irish," and has a twinkle in his eye that makes you feel everything will be alright.  I realized I had never stood up next to him before (I was always sitting in the hospital, always...) and he was taller and more athletic than I realized, and was wearing a green plaid shirt and jeans instead of his lab coat and dress pants.  I gave him an obligatory bazinga! about Notre Dame's awful football team (he has an undergrad degree in English from ND) and we were off to the races.  

I have come to realize that many of this blog's readers are very interested in my photos and in learning about "the process."  Well, medical junkies, here you are, an early Thanksgiving feast for the eyes.   

The glass slides are all prepared ahead of time, and labeled by hand with Steve's name and, I think, hospital ID number.  The med tech's job reminds me of a baseball outfielder.  She waits for the pitch, sees the ball hit, and gets into position for the catch.  The ball (Steve's aspirate or marrow) is delivered into her glove and she makes the play for home.  She quickly takes the samples, smears, rubs, shakes tubes, etc. and gets it all to the lab for both basic and  high-level testing.

 

The first photo is of Steve's aspirate, no wait, his butt isn't showing, is it?  Gotcha.  The aspirate is the "juice" that is extracted from the bone cavity and is semi-liquid marrow, much like the goo from a ham bone.  It can tell us the type and quantity of cells in the marrow.

Dr. Galvin at work, doing a top-drawer job of aspirating and controlling any and all pain or discomfort during the procedure.  iPod selection was a mix from the group Boston, which Galvin deemed "most worthy biopsy music."

We had really great conversation with him, and talked about a shift in medical school training and thinking that seeks students with a broader, more liberal arts background pre-med.  As is often found in "teaching hospitals," Dr. Galvin explained (and smoothed some waters) about how practitioners are trained at Northwestern.

The pièce de résistance, the bone marrow!  This allows the doctors to examine the "architecture" of all cellular structure.  A gender-typing test was ordered to determine the presence of XX (female) in the cells, providing proof that Mary's stem cells had taken up housekeeping and Steve's body was producing new cells.  At this point I get very confused.  I don't know if I need to guard my mascara and Chanel perfume or not (?? YIKES ??)...we are going to get a LOT of mileage in the joke department with this one.  

Dr. Altman told us after the biopsy that there WAS evidence of XX genes on August 28, the date of his last marrow biopsy, and that a tech communication disconnect kept her from knowing and telling us.  THAT means that the FIRST transplant on August 13 DID WORK, it was NOT a failed transplant!!!  Another huge, huge sign of improvement....she mentioned for the first time the *thought* of pulling his PICC line.  Unbelievable. 

Meds stay the same from a week ago.  His Tacro dosage got bumped up twice since the last visit, and now all signs of GVHD rash are all but gone on his lower legs and forearms.  I asked about his high ferratin level, and the ball started rolling to get his Exjade prescription filled.  Did you know there is such thing as "the specialty pharmacy?"  Oh sure, there is!!  Yes, kiddies, guess where the Exjade comes from?  Might take a week or two.  I just rolled my eyes at the thought of Blue Cross paying for that....muah ah ah, I'll find a way!!!!

Returned home to the dog spazzing out with badly infected ears, called our vet, and $123 later (that Blue Cross for sure won't cover), I came home to hear that Dr. Altman called with today's FABULOUS lab results....here we go, and let's hope this party is starting:  

WBCs 2.1  (what what?)

ANCs 1.0 (sweet!! I'm not cleaning anymore)

Hemoglobin 7.2 (she lowered transfusions to <6.8!)

Platelets...drumroll.....79!!  Go sharpen the lawnmower blade!!

Goodnight all!

Steve Gets an A+!

Quite a full day today.  It started off with a rockstar parking spot, even better than handicapped!  Sharon R., Bing Crosby, in case you were wondering.

Clinic was running late and we waited a long time.  A lot of news today, here we go:  

• Altman and Dr. Salem (Director of Interventional Radiology) conferred about Steve's CT results from last Wednesday and Dr. Salem feels the two splenic embolizations have achieved the maximum result possible from that type of procedure. 
• Steve did NOT have a bone marrow biopsy today.  We don't think she is in a big hurry to look into the marrow unless his lab numbers stay flat or go down.  Such is not the case at this time.
• His weight was UP again to 162 from 154 last week, hooray!
• His hemoglobin went up to 7.2 from 6.4 yesterday.  He did have a unit of reds at Christ this afternoon.  He had gone 8 days since last receiving red cells, and he has been taking the blood only because he is borderline on counts and we have a set appointment.  More of a safe than sorry attitude, although the elevated ferratin is the other side of the coin......
• His ferratin level (iron from transfusions) is still very high.  No discussion of starting the Exjade.
• Platelets were 58, up about 10% over the past few days.
• WBCs took a BIG jump today, hitting 1.8, with ANCs of 1.1.  That is great!
• Here's a biggie.....the nurses at Christ told him today that his blood type is now changing to Mary's, just in time for Halloween....creepy medical science!!!  When they "i.d.'d " the blood (two nurse safety precaution) today, Steve caught it when they read, "patient is A+, donor is O-"  They also told him the head of Christ Hospital's blood bank was ALL OVER IT.   Thanks, Kim S., for having our backs on this one!  And Happy Birthday to you, too!

Steve, my Mom and I were able to attend Kevin's Fall Band Concert this evening.  It's the first time we've done anything like that in ages.  Had the sweet parking spot at the middle school, love that car placard.   He was really, really tired.  No nap, and sitting from 11 to almost 9, but he did it!  Goodnight!

Jump Around!

Major day of accomplishment here for Steve.  He has dreamed of returning  to Madison, Wisconsin, his favorite place on this entire Earth since his diagnosis on April 30.

HIS Badgers. 

Peck's Market.  

The Firm Worm.  

Wollersheim Winery. 

Bo Ryan. 

The 5th Quarter.  

Observatory Drive.  

Bucky!!

Apple picking. 

Governor Dodge State Park.

  Jump Around!

Mike Leckrone.

  BEER. 

Bret Bielema. 

Avenue Bar. 

Dr. Robert Schilling.

Badger Hockey.

  His friends from Mt. Horeb High School and their SUPPORT.  

But most of all.....State Street Brats. 

He didn't know if he would ever get there again.   

If you've never experienced the "restaurant," it's on the short list in Madtown.  It's a dive, a glorified bar that serves food, specifically BRATS.  Hello?  Such a clever business name!  Imagine!  It has 12" black and red linoleum squares on the floor, clever signs, pretty and nubile waitresses and a fabulous selection of vending machine condoms in the ladies room.  It's one of those places that makes you want to wash your hands after you wash your hands.  But the brats......ahhhhhhhhhhh!!!!....the beer........and WISCONSIN BADGERS EVERYWHERE!!!!  "Beer is the answer, I don't remember the question!" shouts the sign.

Molly got a ride home for the weekend to see Steve and celebrate an early birthday, HOLLAH at cha on Wednesday, Miss B!  One of her gifts was to NOT take the Van Galder Bus back to Madison, so we piled in the car this morning and drove her HOME.  Steve had a pillow and blanket just in case he needed to crash.  He loaded up his meds before we hit the road. 

It was a wonderful day.  Role reversal can be enjoyable.  This time, I drove, he looked out the window, enjoyed the beautiful rural autumnal colors and thought about his future.  We stopped at Molly's dorm for a clean laundry drop, then left for State Street Brats.  It did not disappoint!!!  We ordered red brats, waffle fries, iced tea x 3.  I can't imagine what was going through his head.  

Medically speaking, Steve is doing well, all things considered.  Home health is now here every other day, and the phrase "no news is good news" is truly in effect.  They are tweaking his Tacrolimus (anti-rejection) levels, increasing them to ward off what we think is a good sign:  RASH.  GVHD is here, and it's mild to date, localized to forearms (gone) and lower shins (mild), and non-problematic.  You can't have GVHD without engraftment.  His eyebrows are growing back, and Steve desperately wants his hair back on his head SOON.  When it starts to rain it freaks him out, hahaha.

He is trying to shore up his mental self now, his six-month mark is the 30th.  That's a long time.  Keep those cards and letters coming, kids, we're in it for the long haul.  Meals and house help have been an absolute godsend.  Bless each and every one of you that has kept us going through this nightmare.

Now, a "before and after."  He hates the way he looks.  I understand, boy...do I understand.  However, I feel it will help many of us to forge forward when we can see our goal.  

ON, WISCONSIN!

Good Day!

Steve's CT scan was uneventful.  We had never been in the outpatient facility at 676 N. St. Clair before today. 

It was remodeled in the past year, and that made it nice for both of us.   The patient waiting area had flat-screens and the main waiting room had complimentary Keurig coffee and tea and a great wireless signal.  (Simple things for simple people, I know....)

After the CT, we had our weekly appointment with Dr. Altman and our Stem Cell APN, Donna.  They are VERY pleased with his progress since last week.  Steve looks better, feels better, his labs are more stable, and he is walking unassisted and with better balance.  He is no longer taking potassium, yet his magnesium bounces up and down.  He is taking a lot fewer pills than 3 weeks ago at discharge.  He GAINED weight since last week, too, up to a fluffy 154 pounds from 148.  The scan showed evidence of much infarcting of the spleen, which is great.  The radiologist and Dr. Altman were going to confer later and determine whether or not a third embolization would be in the cards.  She feels that we are going to go into a holding pattern, and will allow his hemoglobin level to go down to 7.0 again before transfusing.  We don't know what "normal" hemoglobin ever was for Steve, and will not know until the organ is removed some day in the future.  As much worrying and complaining as we have done about his spleen, it may have saved his life.  It WAS doing it's job, and that's why it was so enlarged in April.  If he had had it removed years ago, he may have been a goner by the time the leukemia was diagnosed.  Just some food for thought there.  

Home health will be reduced to every other day, which is nice.  He will undergo an ENT and eye exam on Friday, as they will start giving him Exjade, an iron chelator.   Extremely high levels of iron (from many blood transfusions) can cause heart or liver damage.  They will monitor his vision and hearing before and during the Exjade treatment.  I have no idea how long he will be on the drug, and I'm a bit iffy with what I've read about it today.   ::Sigh::

Next week he will have another bone marrow biopsy.  We have requested Dr. Tim or Dr. John Galvin, our old hematology fellow friends.  The last biopsy was the bad one, and Dr. Altman is trying to accommodate us with our preferred practitioners.  This next biopsy will determine how much cellular activity is happening in Steve's marrow.  If it's not much, they will reinfuse him with more of Mary's cells.  (Not all 7.5 million, I asked...probably half.)  If activity is sufficient, we will play the waiting game and probably give him some Neupogen to stimulate white cell production.  

Did someone say, "Let's play Find The Neupogen in the Fridge Game?"  Okay kiddies, here is a recent shot of our refrigerator.  Let's play!  Top shelf?  Nope.  That's a magnesium and potassium rider to the right of the can of dog food leftovers.  Two of those bags fell out and landed on Kevin recently, scaring the heck out of the poor guy.  Second shelf...you are getting warm....left to right...."borrowed" juice cups from the hospital, a bottle of Tacrolimus (anti-rejection drug), fruit punch and garlic, of course...oh wait, the dark bag with the green sticker?  Sorry, that's the Pentamindine (anti-pneumonia) inhalant solution.  Think those two boxes with barcoding are chocolates for this lady of leisure?  If you said, NO, SUE, those are really sharp things in those boxes! you WIN!  Wait, you'll have to pay Uncle Sam tax on $10,000 of prize value.  That's the cost to our insurance company.  It's also what Mary took to stimulate production of stem cells in her peripheral blood.  Mary had 2 courses, Steve has one for home.  That's a lotta moolah.

A sign of huge improvement on the way home, and I'll leave you with this:  We drove through Portillo's on the way home from the hospital and he INHALED a baconburger, Coke, and large fries.   Goodnight!

Another Person, Another Need. Please Help

I received this e-mail today from Deb Hall-Reppen, wife of Steve's brother Rich.  Their son, (our nephew) Tim, needs a kidney transplant. 

Tim Hall-Reppen is a student at Marmion Military Academy in Aurora, IL.    Her words say it all.  Please help if you can.  Thank you so much. 

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

As many of you know, we found out that Tim's kidneys are failing on September 2nd.  This morning our kidney doctor told us to begin the transplant process.  The good news is that most people have 2 kidneys, and can live with one!  Also, Tim does not have any other health concerns, such as cancer, diabetes, or heart disease.  The transplant coordinator from Rush Hospital asked me if Tim had any people who would be interested in donating.  I have already had some WONDERFUL people step forward to say that they would be willing to donate.  Unfortunately, I know that only 10 people out of 100 are viable donors.  If you are willing to donate, or know anybody who would, please let us know. 

Thank you for your thoughts and prayers.

Love,
Deb

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

Deb's e-mail address is:  deb.hallreppen@gmail.com

Image THIS (Long Read, Get a Drink)

I'll start out with a quick thanks to those of you who get a little worried when I don't update more regularly and seek out information about Steve from me or family members.  Thanks for reading, and thanks for caring.  Or perhaps thanks for being nosy,  I am!  

Steve has been home three weeks today.  His labs have been "good" with ZERO need for platelets (give a sistah an a-MEN!), hemoglobin is behaving nicely, white cells....hmmmmm.  "Bouncing around" is the new phrase we hear daily.  We have had daily home health nursing visits since discharge.   

WBCs were 1.0 today, ANCs at 0.5, so this makes him pretty borderline neutropenic, hemoglobin was 7.9, platelets at 46.  He had a bag of red blood today, more of a shoring up (at Christ) than anything, and he no longer needs the wheelchair for short walks, so my Mom did a tuck and roll with him curbside while I took Kevin to the dentist.  After clinic last Wednesday he took 2 bags of reds at HIS discretion, and that kept him out of trouble over the weekend.  So really it's getting to be more of a maintenance step than a necessity.

Clinic last week was, ummmm, interesting.  First of all, he was able to park and walk the entire distance from the garage.  A volunteer asked me if I wanted a cup of coffee while we waited in clinic and I was absolutely giddy to have someone wait on me AND I had free hands since we were sans wheelchair.  Amazing how something so simple can bring such joy!  Weigh-in was startling.  He was 148 with Nikes and clothing.  Our APN, Donna, was stunned at another 20-ish pound drop.  He was at 191 at discharge 3 weeks ago.  Steve has named himself "Skeletor."  We are trying to find something funny about this.  Dr. Altman made a beeline to his now svelte ankles that had been cankles for months.  She wasn't alarmed.  She is too cool for words.  

And then, the defining moment of the exam.  "Well, your platelets are doing wonderfully!!" she squealed.  May I ask the teacher a question?  Yes.  How high do his platelets have to be for surgery?  She yelled, "SUE!!!!!"  Sorry, did I just play your best card, Jessica?  She turned to Steve, then to me, and said, "he is good now.  Steve, will you please consider meeting with a surgeon SOON?"  The rest of the conversation was not pleasant.  I am now referred to as "the cheering section."  Another tri-phasic CT scan was ordered for next clinic day, which is tomorrow.

Here is my wording on what the deal is:  After two splenic embolizations, his labs are not where they should be, as far as a trend of improvement.  They do NOT want to risk any loss of progress.  They do NOT want to risk losing the 2nd transplant.  If the spleen is still inhaling cells and has no further room for zapping, they want to remove the organ.  If the spleen still has a good amount of functional tissue, they will embolize him a third time.  Embolizing him is less invasive than laparoscopic surgery.  Steve is hanging on to that spleen like a tightwad hangs on to their Communion money.

On a more cheerful note....Steve's appetite, and I hesitate to reference it as such, is markedly BETTER.  He is starting to load calories, carbs and protein, but with much measured caution.  Brownies are fearful in the house.  He had a Big Mac yesterday, and his sister Mary made the now Internet-famous $5 Dish for us last night.  Thanks, Mary, for cooking, driving out, waiting on us, and cleaning up, such a treat!  He had spaghetti tonight and is also sleeping very well.  Again, who wouldn't with Dilaudid and Ambien??  

He has a consistent amount of back discomfort from splenic infarcting, a good sign, I believe???  The tale will be told tomorrow with his CT image.   

Keep in mind that there is ONE other person in THE WORLD that has/had a "similar" case to Steve's, but not exactly like his case.  Our doctors have reached out to their "thinking community" around the globe...Italy, New York (Sloan-Kettering), etc.  for input and collaborative discussion.  The heads of all five pathology labs at Northwestern Memorial Hospital have been personally involved in Steve's case, as well as the head of the blood banks at NW and at Christ Hospital.  Northwestern has taken a conservative course (embolizations, choice of meds, etc.) when needed, and a more aggressive (HyperCVAD chemotherapy regimen) approach when deemed appropriate.  His leukemia diagnosis has never been firmly established, as it has characteristics of several types, PLUS he has Hereditary Spherocytosis, a type of hemolytic anemia, from birth...the "double-headed monster" coined by our Dr. Tim Huyck.  Steve is alive and progressing to good health.

I am grateful to be able to share this knowledge with all of you, and hope that maybe you will think back to this blog someday for help or assistance if you need it.  You never know if it will be your turn. 

Journey to 100 Days

Steve has been home for two weeks now.  His need for constant blood and/or platelet transfusions has gone down.  He hasn't taken platelets since September 30.  His hemoglobin has been pretty steady, and he took a bag of red cells on Sunday at Christ Hospital.  Dr. Altman has raised the bar up to 8.0 and Steve was at 7.9, so they play a cautious hand and keep his level constant.  White cells are bouncing around, we are told this is normal, but it does concern me.  His WBCs yesterday were 1.3, with absolute neutrophils at 0.8.  No fever, great blood pressure.

He was bloated and miserable during his last stay in the hospital from excess IV fluids.  Since returning home he has lost 20+ pounds of water weight.  His weight is now around 165, down from 220.  He is 6'3."  A lot of weight started coming off before his diagnosis, which we saw with our eyes over a long period of time.  Steve looked ill before April 30, and we wonder at times just how close he cut it by putting off medical attention.

I've been asked to define what "normal" lab levels are, so here you go, according to the ranges that Northwestern uses.  Hemoglobin should be higher for men than women.

White Blood Count  (3.5-10.5)  On April 30, Steve's were 108.0

Hemoglobin (13.0-17.5)

Platelets (140-390)  Remember 5?

Post-transplant patients have a tendency to run low in potassium and magnesium, so we are dosing him heavily with those pills and an occasional IV "mag rider."   The journey to recovery is most often discussed in terms of 100 days from transplant.  We guess we should count from the reinfusion on September 15, so Christmas Eve is Steve's 100th day.  

I've also been asked why I don't blog that he is "better."  I think most people think of better as fine, or well, or healed.  He's not.  And I won't.  You can read the black and white print and interpret that he is improving.  Telling you he's better means that the little help and support we get from others will totally go away.  If my problem is gone, so is yours!!   He looks like holy hell, my kids are all stressed out, and I am spending my days applying for aid and doling out pills.  Better?  Surviving.

Wednesday is Prince Spaghetti, er Clinic Day!

We had an early clinic appointment at The Robert H. Lurie Comprehensive Cancer Center today.  That's the official name, in case there is a quiz.  I can't pronounce Lurie without ooooooooing the "u" and that makes me snicker.  Believe me, there are not a lot of funny things happening on that floor.  We were seen in very prompt order for a blood draw and our appointment with Donna G., the stem cell nurse practitioner, Dr. Altman, and Dr. Mehta.  Steve's labs continue an upward march!  Today his hemoglobin was 9.9 (up from 8.4 yesterday plus one bag of red blood at Christ...."normally" he would only go up a point per bag, so this is another great sign!)  Platelets are at 39 today, up from 30 yesterday.  White cell count was hanging around the 1.7 mark, "lazy" as Dr. Mehta remarked, not a big deal.  He has really white teeth, just sayin.'

Steve's visual appearance changes in the last week were significant enough to illicit comments from his health providers. "You look GREAT!" was heard more than once.  He wore something other than Green Bay Packer sleep pants and an unmatched t-shirt today, which was refreshing for me to see, too.  It must be very rewarding for them to see their patients weather the storm and improve.  I'm sure many patients are not this fortunate.

A bit of wonderful news on the caregiver front, too.  We got to eliminate TWO meds from his daily regimen.  A first!!  Hooray for Steve!!  Hooray for Sue and less Pill Nazi talk!!  One of the drugs has huMONGous pills, 8 a day, so BUH-bye Amicar, and we also eliminated a high blood pressure pill that he started taking when his platelets were so dangerously low and his bp popped.  Again, more John Madden Xs.

I am going to start getting out here and there to refresh and recharge my mental health.  Had lunch yesterday with an old college friend and dinner with Megan in Naperville.  She needed her boots and coats to stay warm on the way to the pool for those 6 a.m. practices, brrrrrrr!!  Also hoping for some interviews.....I love the fall and the energy it brings. 

Things Are Looking Up

Steve has been home a week, we can't believe it.  Labs show steady improvement, most notably his platelets, which hit 30 today.  I sent him into the kitchen to sharpen knives the moment I got that news.  So kidding.  Essentially, without getting transfusions of either red cells or platelets, his numbers are rising.  Dr. Altman said those cells ARE being made, so it appears that Mary's stem cells have taken up housekeeping somewhere....AND the spleen is shutting down.  Halleluja! 

He has been eating juuuuust a bit of food here and there, still no real sign of an appetite.  Steve has also lost 15 or so pounds of water weight from all the IV fluids in the last week.  His magnesium got very low, so we have been giving IV magnesium at home with a pump plus oral meds and that did the trick.  There is so much involvement on our part back and forth with the hospital on the phone that you would not believe it.  His drug chart looks like something John Madden would draw, Xs and Os.  His sleep is sometimes good, sometimes not so good.  In many ways it's like having a baby in the house.  You need to make sure they don't nap too long or they get their days and nights mixed up.  I am hoping to get him to walk a bit outside in the next week, or use our stationary bike to build some muscle tone back.  And it appears that a bit of new hair is sprouting on his head, he never went totally bald, just fuzzy like a penguin chick.  We have clinic tomorrow and hope for a good assessment.

Fill 'Em Up!

I've probably lost most of you with all this talk of cells and lab results.  Today, it's a simple statement:  Steve's numbers are improving, and Dr. Altman, we were told, was surprised and pleased!  The dreaded platelets were at TWENTY, that's right folks, 20, at his draw around lunchtime.  So, I do think the cowboys in Interventional Radiology done shot that spleen.   His hemoglobin was also at 8.4, which was also up from 7.7...and he has not had a bag of red cells since last Tuesday morning.  His white cells are down to 2.3, but Dr. Mehta warned us this number could bump up and down until the second engraftment takes hold.   

We were allowed to use a room in Prentice as a filling station.  Sparky's, not Goober's.  It was great only needing red cells and not platelets.  Stinkin' washed platelets take forever to get!  All told it still took from 10:30 a.m. to 5 p.m. to jump through all the hoops for one bag of blood, and that was with his cross and match still in effect from clinic on Wednesday.  (THAT takes an hour and a half!)  Believe me, we are grateful for all the safety measures and checks and balances put in place by the blood bank, grateful for everyone that donates (shout out to "Double Reds Deb!!!), and for the keen eyes of the director of the NW bank that personally watches out over Steve.

The Boy Scout dinner ran from 4-7....if you know Chicago geography you know that leaving Streeterville after 5 and getting to the dinner was not going to be easy.  Steve wanted to go home and directly to bed.  I couldn't let Kevin down.  As we got close to Oak Lawn, Kevin texted us that the leaders were really hoping Steve made it....so Steve and I made a decision to just go for it.  We called Molly and she met us at Trinity Lutheran Church with our borrowed wheelchair from Trinity (which, I must say, is pretty sweet, it's lightweight, electric cobalt blue, and easy to lift into the car!).  It was something Steve had planned on doing for months, his return to Hollywood!  I was as nervous as a long-tailed cat in a room full of rocking chairs, thinking about all those cooties, uncovered sneezes, but mostly about Steve's energy level and getting overwhelmed.  I had to take a leap of faith with all those pills, and realize most of the meds he takes are preventative, not curative.

He ATE....did you read that correctly??...ATE 4 or 5 pieces of Italian bread, salad with Italian dressing, and "a lot" of spaghetti.  I was flabbergasted.  Just hours earlier at Northwestern, I goaded him into eating some vanilla ice cream from the cup, and even then he agreed to eat it ONLY if I FED HIM.  Clearly, this means we must start dining in crowded restaurants.   I'm going to need a designated driver!

Many people came up to him and were thrilled to see him make the dinner.  That so warms our hearts, and we thank you.  Good night!

p.s.  Please leave a comment if you like. :-D

A Day Off?!

It's true.  Steve and I were home ALL day today, no hospital visits for either of us!  We got some incredibly great news that this morning's blood draw (home health nurse @ 8 a.m.) showed his platelet count jumped to 18!!!  Yesterday's were at 15, and Wednesday's were 5....even though he got one bag of platelets Wednesday and one on Thursday, his count has NEVER gone up like that, so we got to cancel our Blood Center appointment.  Hemoglobin is down a bit, to 7.7, so we bargained with the staff to let us come in to Prentice as an "outpatient" on Saturday for a quick fill-up, which will hopefully only be red cells.  Some more good news, at least I will take it as such, is that his back was sore today when he awoke, especially the left side (spleeeeen infarcting? hmmm?).  There could be a correlation between rising platelet counts and reduction of spleen function.

They are trying to shore up potassium and magnesium levels again today, so he has a large bag of IV fluids and a battery-powered pump at home in a fanny pack.  It's pretty clever!  This way he can be mobile and get what he needs without being tied to an IV stand.  Only thing is, he doesn't have a fanny.

Molly and I did a lot of cleaning, picking up, and work on Steve's web business. So, so much of our home has been neglected and we still have a huge to-do list, but we did get some knocked out and it felt great to have help!!   Molly went to Costco for some items that are appealing to Steve, and we were thrilled to be home for an entire day.  You cannot imagine how nice that felt!!!

Kevin's Boy Scout Troop Spaghetti Dinner is Saturday from 4-7, so I know Steve would love to stop and say hi....let's hope for a great night's sleep and some more baby steps of improvement tomorrow!

5 Months Ago Today....

....our lives changed.  Seems like yesterday and 100 years ago at the same time.  I will never get some of those visions out of my head, many are still too fresh.  One in particular.....there is a back hall in Feinberg, not accessible to the public that is used for staff and patient transport.  The night of April 30 he was taken from the ER through the underground tunnel system two blocks north to Prentice.  I walked behind Steve and the man from Transport.  It was a very quiet, solemn march.  I tried to distract myself by looking at the art on the walls and reading placards next to the closed doors.....and then I saw this one, "Family Viewing Room."  I realized at that moment we had a fighting chance.

Too busy to blog, yesterday was an absolute logistics nightmare and I was on meltdown pretty much from the time my feet hit the floor in the morning until I dragged my carcass to bed.

Today, however, was MUCH, MUCH better because of a lot of my pushing and goading and....may I say BADGERing of many people at many levels at many places.  :-)  I think I took or made 7 or 8 phone calls before we got out the door this morning for the blood center.  Today we left at 11, and got back around 2.   I challenge ANYONE to beat that time!   That included stopping at church to switch out wheelchairs, make the mortgage payment at Harris, get to NW, park ALLLLL the way up on the 10th floor (Louis Armstrong in case you were wondering), get him in the wheelchair, motor over to the blood center, sign all the legal papers, draw a CBC, clear all 3 lumens (1 is clogged, the tech had to page hematology on that one), administer premeds, hang the platelets, validate parking, motor him back to the gargage, and drive home.  Oh yes, I also called the home health nurse as we left to come after 3 to hang a "k & mag rider" (potassium and magnesium) with a pump which was delivered (please refrigerate) at 8:30 last night.  And I became "the Mayor" of two more locations on FourSquare, probably lost most of you on that one.

Here's the deal.  *Normally* you would not discharge a patient until their labs were "stable" or "good" and those results must be in a trend...preferably the same or better.  However, that puts everyone (Blue Cross, Northwestern, the docs, and us) in a position of having Steve stay in the hospital on an inpatient basis SOLELY for daily platelets and a less frequent blood transfusion.

Yesterday we had clinic, and his hemoglobin was an Academy award-winning ELEVEN.  I don't think it's been that high since I've known him.  That was after just one bag o' blood on Tuesday; he normally goes up one point for one bag, so he went from 8 to 11, very impressive.  His WBCs were about the same, 3-ish, but the damn platelets were at a scary 5.  He got a bag yesterday and then we began the policies and procedures nightmare of getting special order "irradiated, leukocyte-reduced, WASHED platelets."  He needs them EVERY day.  Northwestern's blood center is closed on weekends.......you cannot get product at home.....(actually, I found out you can, but it sounded worse than what we were already dealing with, and safety is our #1 concern right now....grrrr).

Kim S. (bless you, bless you) is advocating for Advocate, ar ar ar, and has made many connections on her end at Christ Hospital with the head of their blood bank and other people with large incomes and impressive titles to help Steve transition to Christ for "fill-ups."  Their transfusion center IS  open on weekends and is 5 minutes from our house.  That's a win-win.  Of course, this takes both hospitals coordinating and communicating.  I feel it will happen, and our stress level will downtrend.

Dr. Altman is pleased with Steve's progress.  She and Dr. Mehta conferred twice already this week about the next step.  Steve will have another CT scan on Monday at NW to assess splenic function. They keep hoping the  two embolizations were enough.....a third is still in the cards as long as the platelets are being inhaled.  I compare his spleen to a diabetic set loose in a candy store. Nom nom nom, thanks for the platelets!   The good news is that his risk of bleeding to death from his spleen erupting is pretty much gone.  He slept well last night and ate a sloppy Joe (and a pickle, please) and a small bowl of ice cream at bedtime. 

Tomorrow we have a 2 p.m. appointment in the Blood Center at NW, and hope he will feel even better.  He sat on the couch the entire evening tonight, watched tv, and conversed a bit with friends that stopped in to say hi.  He also ate some KFC, his request.   His appetite just isn't there at all, and I am hoping as his counts come back up that he will get hungry.  It's very frustrating for all involved.

Molly came home a day early for the weekend, so he is thrilled to have her home for a few days.

Sue

This Just In...

He is coming home today.  Numbers are up some more, they are hanging a bag of platelets and 2 units of reds and sending him on his way at some point later today, my guess is at rush hour.  Stay tuned.

****Update, 8:15 Monday evening****

Home and resting.  He's less medically fragile than a week ago.  We are scheduled for clinic tomorrow morning, (YES!  Back we go!!) so he will have blood tested and platelets hung.  We are being exceptionally pro-active on our end with this, and calls started up the MOMENT discharge was announced.  We will have daily home health assessments and labs drawn.  Eventually Steve will be able to get blood and platelets at local Christ Hospital.  

3 a.m. results:  WBCs at 3.1 (ANCs 2.5), hemoglobin 8.8, platelets at 8.  Dr. Mehta came in early and told Steve that while he would prefer his spleen was 100% embolized, he would settle for 80% and is hopeful the reinfusion of stem cells coupled with the dying-on-the-vine spleen will vault the numbers upward.

I am happy he is not neutropenic, that makes for less stress in the house in many ways.  He's still not eating, although I would imagine being home will help that along faster than if he was still in the hospital.


Goodnight.

Monday Night Lights

Steve is doing better tonight.  His mornings and afternoons have been rough with all his pre-meds.  He just ate some fresh fruit and is enjoying the Packers/Bears game.  His CT scan showed 75-80% embolization from last Wednesday's procedure, so he was told they will probably take a pass on a third zap.  The Neupogen shots have been completely stopped.  He is getting doses of IV Dilaudid every 4 hours to keep the splenic infarct pain/discomfort at bay and it seems to improve his general well-being.

Today's labs:  WBCs snuck up a notch to 2.8, with ANCs right behind at 2.4.  Hemoglobin was at 7.4 (hung one unit of red today), and platelets were at 6....he also took a bag, so the fact that platelets didn't go lower is great, right?  We can hope.

During rounds they said he will be here another couple of days.  Steve is shooting for a Wednesday discharge.

I am hoping to get out of here after half-time and avoid the Soldier Field exodus, hope the score stays close until after I zip by the bright lights of the stadium!

Sunday ~ Not Always a Day of Rest

I couldn't get in touch with Steve this morning.  Normally, he texts me before 9, earlier if it's good news.  If I don't hear from him after a reasonable amount of time, I contact him.  Today I had no luck (for the first time) and my mind started racing.  Eventually I phoned the nurse's station, and was told he was asleep on the couch/bed.   I decided to get here and get him going, as last night he backed out of any attempts to walk or shower because "you should do that in the morning."  He texted me at 10:45 that he was in a Benedryl stupor.  Fine, I thought, Sunday will not be a day of rest for you.

I had a wonderful, energetic drive to Northwestern, singing along (with a lil' dancing) to the radio, and clocked myself at 60+ mph as I went past Soldierzz Field.  

I walk in his room, dark as a cave, and all he has hanging are IV fluids.  His numbers are UP, and I am THRILLED to report....WBCs at 2.5/ANCs 2.1, Hemoglobin at 8.3 (Olympic!), and platelets at a sucky, but respectful 7.  He did have one bag of platelets up early this morning, hence the Benedryl buzz.  They are dialing down the Neupogen to one shot a day instead of two.  THIS is progress.  

He is like a hibernating bear, and about as pleasant as one when woken in mid-winter.  I yanked up the blinds, ordered orange juice and ice cream from the floor, and started my mission.  He is convinced he is going to be sick.   I called the nurse to hit him up with some Compazine to back up the Zofran.  He ate half of the ice cream, complaining about how I put the spoon in his mouth....then he drank one of the juices.  He is convinced he has to nap now.  I'm giving him 15 more minutes, and will risk certain verbal abuse when I go to Phase 2, the shower or the walk, you pick, Chemo Man!!

****Evening Update****  Well, the shower was the winner, but Steve felt really, really lousy.  He was so out of it that I feared more than once his legs might not hold him up, THEN what do I do?  I chose to feel guilty.  Decided to get his nurse, Maria, cornered out in the hall and have a chat.  She came in the room and the three of us had a good talk about how he felt, what meds he had been taking, and the mind/body connection (and I am gesturing to her when Steve isn't looking, the "crazy" spinning finger to my head sign).  She has been his nurse a lot lately, and is one of the older nurses, so she was very willing to team with us on a solution. 

Steve feels bloated, too many IV fluids.  His spleen feels tender, like a bruise, when he rolls on his left side.  He asked for some Dilaudid, got it, then took a big, snore-filled lip-flappin' nap.  It looked and sounded like the best sleep of his life.  Maria called the on-call physician, and got an order to reduce the IV fluid drip.  When he woke, his demeanor was changed.  I wouldn't say perky, but better.  "Hand me that fortune cookie from last night and that banana."  That will be his dinner.   Hoping for more good news tomorrow morning.

No Pain, No Gain??

Not a lot to report tonight, lab wise.  His WBCs did pop back up 1.8, which is great!  Hemoglobin was a nice 7.5, dang platelets at 4.  He was given two units of blood and one bag of platelets.  Maybe they figure, why pour platelets down the drain, such a waste?  Last night he had some pain from the embolization, much to the glee of Dr. Mehta during rounds.  That means the efforts of the procedures are paying off.  His pain was managed well in the night.  Hasn't had any pain since that episode.  They will do another CT on Monday to assess the percentage of embolization from procedure #2.

Today he had a few sips of a McD's smoothie at lunchtime.  He sat upright in the recliner chair for most of the day.  Tonight I managed to get him to eat some fried rice from our favorite Chinese restaurant and almost a full cup of vanilla ice cream.  He is really battling a mind/body connection with food.  He is afraid of getting sick if he eats, and getting more ill if he doesn't.  I know that once his white cell count starts to climb,  his outlook, energy, and overall demeanor will improve.

Some very sad news at the end of this week.  Please say some prayers or keep in your thoughts two other families in need of emotional support.  Megan's boyfriend, Matt B., lost his father this week.  Mr. B. had been estranged from family and friends for many years, yet this news was a big shock to all.  We are sorry for Matt's loss and hope everyone rallies around the family.

Also, the family and friends of Tim P. will be welcoming him home to Las Vegas.  Tim was Steve's neighbor these past two admissions at Northwestern Memorial, and his brother Gary and I struck up a hallway friendship this past week.  Gary got to meet Steve's brother Pete when he was in last weekend.  Their story was unbelievable, and Tim was not in good shape.  Gary told me Tim was being given two more days of medical intervention to the best of their abilities here, and then, unless he rallied....there would be nothing more they could do, and Tim would be sent home to die.

Tonight when I arrived with Kevin, Tim's room was empty. 

Benedryl Buzz

Lab results from early Friday morning were "disappointing," according to Dr. Mehta, but not cause for any alarm.  His WBCs dropped from 1.7 to 1.1, hemoglobin down to 7.1, and platelets plummeted to 4 from 14.  I came downtown via the train and bus today, and will return the same way.  He already had a bag of platelets hanging when I arrived around 9.  A unit of blood also went up, and now he is having intravenous immunoglobulin or IVIG.  

The PCA was disconnected.  No pain from the embolization (again, mercifully), and his spirits are pretty good.  However, all blood products require Benedryl as a pre-med, and he can barely hold his head up from that and a lack of food.  Just getting him to take his pills requires me to roust him out of a fog.  He did sleep well last night. 

Game plan is to draw a CBC as they have been doing, once daily, and hang products based on that number.  They are only giving him one unit of platelets today.  Andy Garcia visited him early this morning and told him the blood supply to the spleen is "sluggish at best."  There will probably be a follow-up CT scan to determine post-embolization (#2) function on Monday, with a possibility of a third zap to the spleen.  I asked about this piecemeal process and was told that while embolization certainly strangles and kills the tissue, cutting off the supply of blood is another issue.  It is a highly vascular organ.

We are essentially waiting for Mary's second infusion of stem cells to engraft.  Steve is Day +9.  The first transplant had "very little effect."

Thankful Thursday

Steve slept better last night than he had in weeks, according to his opinion.  I heard him snoring gently all night.  We had an exceptionally wonderful nurse, Denise, and she kept him comfortable.  His 3 a.m. labs showed marked improvement.  A lot of my fear from yesterday's procedure was based on his bad labs and risk of bleeding.  Today's WBCs shot up to 1.5 from a dismal (and neutropenic, gads!!) 0.7 yesterday.  ANCs are right behind at 1.2, double from yesterday's 0.6.  He ended up taking 5 bags of platelets in an 18 hour period, so today's count of 14 is misleading.  Hopefully, knocking that spleen out of the ballpark will show a true number soon.

The interventional radiologist from Feinberg visited Steve this morning at 6:30.  He resembles a young Andy Garcia, so that was a pleasant way to start my Thursday :)  He checked out Steve's groin/femoral plug, and said all was well.  The spleen had started enlarging (again); doc said it was pretty big.  Of course that triggered our version of a classic fishing tale...."Ya shoulda seen how big it USED to be!  Heck, in April that darned thing had it's own zip code!"  O.K, I exaggerate a bit there, you get the idea.  On April 30, diagnosis day, his spleen distended about 2" below his belly button.  Here's a normal spleen:

The radiologist said they went for the maximum embolization.  It will take months for the organ to completely infarct and wither up.  Not sure if wither up is medically accurate.  Maybe it's more like the transition of grape to raisin?  Speaking of wine, I snuck some into the hospital last night from Water Tower Place.  Hot shower, cold wine, snoring husband, million dollar view, full moon....ahhhh.   ZZZZ.

Waiting on rounds, going to fetch a Starbucks on 2.

WHAT a Day!

For the record:  I do try to be brief.  What I blog is about 25% of what happens in a "typical day."  There are many story lines, personalities, and....most of all, change in plans minute by minute.  Sometimes things make sense after I write, because I don't have all the facts and tidbits.  I love the tidbits.  And if you don't like change, don't get cancer.

Today I was more an advocate than caregiver, to the point of being juuuuut a bit outside the line I shouldn't cross.  And then I said, "what the &*+$."  Steve is a complex medical case, and I am like his mom, medic, and mynah bird.  He went from Prentice to Feinburg and back again.


Nurses confer, doctors do their own thing, hopefully attendings are overseeing.  For example, talk is made of platelets.  WASHED platelets, says the wife.  We must order platelets for him in IR recovery.  Respectfully, Prentice put in the order earlier.  He takes .25 Tylenol.  Excuse me, that's .25 Benedryl.  We are going to embolize another 25% of his spleen.  Dr. Mehta and Dr. Altman want 100%  You need to confer with them.  The hospital and staff cannot make everything run like a top without patients being involved, asking questions, and most of all, being compliant.  Get educated, ask for opinions, and let them know your needs. 

Steve went for a tri-phasic CT scan.  Here's that definition from Answers.com:  

A tri-phasic CT scan is a scan which will show three different stages of dye uptake in the body. The first phase will be before the injection of the dye, the second stage will be for when the dye is in the arteries (roughly 20 seconds after injection) and the third phase will be when the dye has reached the veins (a few minutes later). Sometimes a fourth scan is also done to show the dye uptake in the kidneys and bladder. A tri-phasic scan clearly delineates lesions in the liver and will show problems and irregularities in the arterial and lymphatic system. 

The CT was used to determine how much of the spleen was embolized LAST week, so the Radiologists could determine their plans for today.  Luckily for all of us, a procedure room opened up in IR sooner than expected, and Steve was transported by Paul, a former painter for 20 years (haha), via the patient tunnel, to Feinberg.  His brother Rich met me at Feinberg, and stayed with me during the long wait.   Steve came through the procedure much as he did last week.  I did not receive a wrap-up from the doc like I did last week, although Steve said "they embolized a LOT more and used a LOT more stuff."  CT results showed 25-30% embolization results when they were shooting for 40-50% last Tuesday.

As the spleen dies, or infarcts, there is supposed to be acute pain.  Last week he had none, this time we hope it will be the same or very little.  The PCA is running tonight with Dilaudid, continuous drip, plus a 15 minute hit if he needs it.  Hoping for some great labs tomorrow with nothing but upward movement and engraftment in a week of his reinfusion.

While we were in IR, Steve missed a visitor.  This made my day.  Goodnight all.

Ugh

Back in the hospital at ten this evening. Platelets dropped to 5. Decision was made to admit, give platelets, abdominal CT with contrast, and then embolize the rest of the spleen. This is the first time I've really been scared. Please hope for skilled hands and measured, clear thinking for his doctors. I am staying with him tonight.

Wednesday morning, 10:45 a.m.  ~  Steve and I both slept *well* with hourly vitals and a constant stream of interruptions.  He was given two units of red cells and two units of platelets in the night.  He is NPO anticipating the pending CT scan.  He had to drink some gawd awful liquid for the CT that smells like sulfur/rotten eggs.  Bless his heart, he got that down.  The scan will be today, the embolization will be today or tomorrow, pending the push on our end to squeeze him in to the manic schedule of IR (Interventional Radiology)......as I am typing I am told the embolization should be today, and Transport has been called for the CT, which is in Prentice...nice.

I was here for rounds, the first time since transplant.  They are going to give him another unit of red blood; hemoglobin is at 7.6 and they want to get him good and juiced for the procedure, along with FOUR more units of platelets.  

Dr. Mehta, the Director of Stem Cell Transplant, was actually here with the team.  I understand he does not round.  Let's just say I had a few questions and did pretty well not being *too* pointed.  He informed us HE wanted 100% embolization last week, and IR did 50%.  "So someone went over your head?" was my response.  On the way out, I put in my request.  "I want your best cowboy in IR.  (They spun around...???)  I want your best guy for this, The A Team.  It's what we get up here, I expect the same in IR." Word just in that the embolization will be early afternoon.  They will transport him to Feinburg with the 4 units of platelets in case there are any issues with bleeding.  His 7 a.m. labs show more decrease in WBCs to 0.7.  It's showtime, folks.

The red blood will go up after IR.  Steve is in good spirits, just wants to get it going!  Nurse Blanca is awesome, she is all over everything.  We are in good hands, please keep us in your thoughts.  Will update as info is available.