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.

Paging Dr. Reppen

We got to Prentice at lunchtime, around 12:15.  We means my Mom and I.  My sister ran over from her office to help load the car.  It was obvious immediately that we would be a while.  We sent her back to work and played the waiting game.  It was 7:35 p.m. when I pulled out of the Prentice driveway.  They gave him one unit of blood and four units of platelets.  Two bags of platelets were ordered after his blood finished around 1:30.  There is a two hour hang time for the washed platelets to arrive after ordering them to the floor.  He did not sleep "at all" last night, even with Ambien.  He said his mind was just racing all night.

Be careful what you wish for.  Steve wanted to go home, telling the Stem Cell Team we would do anything to be managed at home.....the staff is aware the level of support he has at home is exceptional (it's not bragging if you can back it up, I read that on a swimmer's t-shirt when the girls were in high school), so now I can add "gives shots" on my resume.  Steve is taking two injections of Neupogen daily to stimulate white blood cell production.  This was his 8th admission, and only the 2nd time we got a drug chart at discharge, I am giddy with excitement!  We could put a crack dealer to shame with the dope in this house.  


We are scheduled for heme/onco clinic on Wednesday.  They want an abdominal CT scan to check on splenic function.....why is his body gobbling up all these cells and cell types?  We were told they could zap that bad boy spleen again....I need to get some solid answers about maximum embolization levels.


Steve had two glasses of ice water, a piece of bread and butter, and some chicken soup before going to bed tonight.  He has agreed to let me help him in the night if he has to get up.  He has a "mental grocery list" in his head, and I will go shopping tomorrow to fill his requirements.  And then he won't eat anything he requested, HAHAHA to Pete, Bob, Shirley and the rest of the family that gets that joke.

Houston, We Have Lift-Off!

I will be on my way soon to bring him home.   Details to follow.

Weekend Update

It's been a challenging few days to say the least.  Steve's labs showed remarkable improvement after the embolization on Tuesday.  His WBC count went up as high as 5.2 on Thursday afternoon, then have declined each day.  Today he was at 2.1 (I think).  I have not spoken with any of the doctors about this, so I'm very confused as to whether the drop is from natural attrition (with lack of new cells being made), or if there is something causing the counts to drop.  No fever, no infection.  His swelling is much better in his feet, with very little evidence of the gout flare.

His hemoglobin is okay, hasn't taken blood every day.  The platelets are another story, and that is what has kept him in the hospital.  Still single digits, as low as 6.  His demeanor took an uptick Saturday afternoon after a shower and change of clothes.  His brother, Peter, visited him from Kentucky and Molly made a trip in from college in Madison.  Today he looked more like his old self, and he has had some small amounts of food both today and yesterday.  Tonight he sounded great on the phone and had ventured out of his room for a walk once around the halls.  I'm not sure the last time he walked...

He TOLD the doctors on Friday that he WILL go home tomorrow, Monday.  They are on board with him, and we will have to take some extraordinary measures to manage him at home until the reinfusion kicks in in a week or two.  

Now some bad personal, not medical news, then some great news.  

Steve was put on an "unpaid leave of absence" Thursday by his employer.  That's all I should say in this public forum, and please be aware people associated with that company may be reading this blog.  I will take the high road, and know that it happened for a reason.  We understand the business side of life and truly hope none of those people are ever in our shoes.

Now, the GREAT news!  Many of you "don't do Facebook," so bear with me.  Many charities and social causes have fan pages on Facebook and allow you to make contributions online.  There is a way for you, in honor of your birthday, to have your friends make donations to a favorite cause.  I thought I would give it a spin, why not?  The Be The Match Foundation is now my pet charity.  My goal is to raise $2000.  I am still stunned at the speed and depth of my friends generosity, we are within hundreds of my goal!!!  Monetary gifts have ranged from $10 to $500.  I would love to see this wonderful organization get much-needed funding and awareness in the community.  Thank you in advance.  You can also register to become a stem cell donor via mail, or you can find a drive being held in your area and register on-site.  Here is a link to my birthday wish.

Let's wish together that his labs go up overnight and he can come home and STAY home! 

More Good News...

Today's lab results show a marked improvement in WBCs, now up to 3.4 with ANCs at 3.0.  That is more like it!  Engraftment begins with white cell count first, then reds, then platelets.   He is getting blood (Hemoglobin 6.3) and platelets (6, boo) this morning.  He has not had ANY pain or discomfort from the embolization, although he does have a small drip of Dilaudid running, so that may be covering any issues he might be having.  Reinfusion of Mary's cells was non-eventful.  They did not need to use preservative with the cells, so a lot of monkey business was avoided with side-effects right there. 

He ate a bit of pizza and drank some pop last night.   It will take a while for his appetite to come back and his taste buds are pretty shot.  It seems his taste of sweet is the last to recover.   The effects of mucositis are long gone.

Dr. Altman spoke with him yesterday, yet he had absolutely no recollection of the conversation, so I am in the dark on her view, will report back.

Up, Up and Awaaaaayyyyy!

UNbelievable news this morning, and all good!  His 3 a.m. CBC results:  WBCs at 2.9, Hemoglobin at 7.3 (no blood yesterday), ANCs at 2.6, and platelets at...drumroll....13!!  Of course he did take 4 bags of platelets yesterday, most to load him up for the procedure.  He had NO pain all night or this morning and slept like a baby.  There is a tiny bit of Dilaudid on a continuous drip via the PCA, so that is probably warding off any gout, groin, or splenic infarct pain.  He is also able to walk again due to a low dosage of steroids.  They are giving him one shot of Neupogen a day to stimulate WBC production.

He will be reinfused with Mary's cells at 11 a.m. this morning.

"I HATE That Spleen!!"

Ahhhh, not my words for once!!!  Once Steve has recovered fully, you can count on Dr. Altman chasing him down Superior Street with a dull dinner knife.  Actually, after today, Steve may roll over instead of running.

Since my last blog, his condition has been, at best, "even."  His labs have been on a slow decline, with WBCs going down to 1.2 from 1.7 at discharge on Labor Day.  Hemoglobin has been in the low 7's, but the platelets have become a huge issue.  He is receiving washed blood and platelets, with Benedryl, Tylenol, and hydrocortisone as pre-meds before each hang, which absolutely knocks him out.  Imagine waking up in the morning and getting Benedryl?  Dang.  Check out the pic of washed blood, reminds me of a cross between an old 45 record with the plastic insert thingy or perhaps a juicy whoopie cushion?  

Results on platelet lab results:  Sunday morning, FOUR, Monday morning SIX, and that is after getting bag after bag.  His b/p goes up when the platelets dive, and this puts him at risk for brain bleeds.  Not good.  At all.

The NW Lurie Hematology/Oncology group meets on Monday afternoons.  Yesterday, with a unified decision, they chose to have Steve undergo a splenic artery embolization.  It's not surgery, but kinda.  We were told about this being an option a long time ago.  He went to Interventional Radiology at 2:30 today.  He was given Fentanyl and Versed, along with a local anesthetic at the entry site (femoral artery, like a heart cath).  They guided a wire (?) up to his splenic artery, then "camped there" and "took a LOT of pictures" of his spleen after contrast dye imaging.  The docs told us before he went in that they were going to really take their time (THANK you) as this was a special case and they were very aware of what a bleed-out risk Steve was, due to such low platelets.  Once the pics were taken, they shot "Gelfoam" into the artery to essentially plug/choke off 40-50% of his spleen's function via distal capillaries.  This will cause sections of his spleen tissue to "infarct" or die from lack of blood supply.  It is permanent and a wonderful alternative to splenectomy when surgery is not an option.  Surgery has been discussed at length since this began, and was never a good option due to Steve's risks of infection or relapse of leukemia.

An embolization is done in a case like Steve's to keep the spleen from trapping platelets and other cells.  Mary's stem cells need to find their new home in his bone marrow and his spleen may have an appetite for those as well.  All the work that has been done is for naught if the spleen is killing and/or trapping good cells.  It was time.  

He came through the procedure with flying colors, vitals were good.  He had one of my favorite night nurses, Sophie, tonight, and I know she is fond of us and was keeping a good eye on him.  They put up his PCA with Dilaudid in case the infarct pain presented.   Bad news:  Could be intense pain for days.  Good news:  He had a splenic infarct in May and thought is was kidney pain.  We went to the ER and were sent home and told to take Tylenol.  If this is the same pain, he is darned good to go with Dilaudid.

Oh, I'm sorry, did I mention that today was ALSO his sister Mary's SECOND stem cell harvest??  God bless, her neck catheter was inserted yesterday, and today she was harvested.  Overachiever!!!!  Mary was able to donate 15 million stem cells for Steve.   She had a very, very rough go of it, even with all the meds they gave her, and we are very, very grateful.  Thank you, Mary!!  Tomorrow, 7.5 million cells will be infused into Steve, with his less functional, new-age tech spleen.  

We have no where to go but UP from here!!

Question Answered!

A BIG thank you to Pam and Paul Mallo, our neighbors, who gave up their social evening at Fall on the Green to go with me to visit Steve.  It's always fun to be with them, and Steve enjoys their company.  He is feeling okay today, seems to me he is getting stronger and staging for a rally.  He ate *a* grape and *an* M & M today, and drank a shorty bottle of Gatorade.  It's a start.  We have a snack buffet set-up on his dresser, ready for hunger to return.  He has the chilled fruits waiting too.  

Nothing too exciting (YAY) medically happening right now.  His labs are just hanging out, waiting for an uptick.  Hemoglobin was 7.1.  They have his Tacro up along with Magnesium and Potassium.  

I made a friend in the hall at Prentice when I was fetching ice for Steve's cooler.  Her name is Sharon, and she was pushing what Steve calls "the double-wide IV stand."  You would have to see it to understand it, let's just say it looks like a high school shop welding project.  

Sharon and I talked at length (my ice was melting) and she told me, in a very excited and positive voice, about her upcoming stem cell transplant.  Remember how we heard (I believe it was the Hogan's Heroes blog entry) that there are stem cell transplants being done at Prentice with NON-cancer patients and I was nosy as to what that meant?  Well, this was the answer to my question!!  She has an auto-immune disorder, and came from Connecticut for treatment.  

I looked up her doctor's bio, and was blown away.  Check out the future of science, better get ready, it's here!!  Dr. Richard Burt is her doctor, and she is part of a controlled clinical study.  She has a rare disorder, and did not respond to first-line therapy as 80% of those do with the same illness.  We chatted like old school chums about Neupogen, cell harvest, and the awesomeness of the staff at Northwestern.  I hope to see her again and wish her well.

Friday Night Lights

My blog is titled Friday Night Lights because I had three references to lights on my way downtown tonight.  First of all, the White Sox were playing a night game, so I smiled at the bright night beacons while I thought of my Sox opener games with college friends.  Steve remarked that he was lying in the dark, just looking at Trump Tower and the lit spire, and that he was absolutely too tired to do anything else.  As I zipped up Columbus Drive, I noticed the black car behind me did not have on their headlights.  The car pulled up next to me at the stoplight, and I let the driver know.  He was thankful and I was grateful he didn't shoot me.

Things are "better" today.  He is not overly lucid, and, in this state, does not communicate too well.  He mentioned that his b/p was elevated at some times today, and other times not so much.  It was 124/70 tonight, which is great.  He only has Tacro hanging on the IV (his anti-rejection drug), so hopefully he can get another good night's sleep.  The more things hanging on the IV, the higher the risk of one of those darned machines beeeeeeeep-beeeeeep-beeeeeeping in the night!

He asked me to bring him some snacks and beverages, even though he is NOT hungry and NOT eating.  And he doesn't care.  I got to NW at 8:30 and left at 10:15.  Got him to eat a bit of watermelon and a "Donette."  He was also very thirsty and drank quite a bit of water.  He has a large cooler in the room, I fetched some ice and got everything cold again.  He has fruit, Pepsi, and Gatorade.  I wonder a lot how long it will take him to gain weight and look "normal" again??  My guess is a very, very long time.


The BEST news of today is that Dr. Mehta paid him a visit.  (Director of Stem Cell Transplant.)  He said, "Steve, I am less concerned about your labs than you are.  Your white cells are just lazy.  We will not make a decision one way or the other to reinfuse you until Mary has been harvested.  If we decide not to use the cells now, we will store them.  Don't worry about not eating."


In case you are new to my blog or unaware of our crusade, please take some time to get familiar with the stem cell transplant process and how YOU, yes, YOU, could save a life!!!  Be The Match!

Reverse-Reverse

So he gets a call from Dr. Altman at dinnertime yesterday...his hemoglobin and platelet counts were not only low, they were dangerously low, so BACK to the hospital we went last night.

Will update later.

****************** 

Friday morning ~

Steve and I went back to NW a little more than 24 hours after he got home, got to Prentice around 7 Tuesday evening.  His hemoglobin had gone down to 6.3, platelets at 6.  The platelet number was cause for alarm, as they help the blood clot.  Very low hemoglobin puts a person at risk for major medical events like heart attack and stroke, quickly, and without much success of revival if they occur.  Think about that while you are driving someone to the hospital.

We were to stay for a unit of each product, then go home.  Because he had that reaction to platelets on Sunday (see previous post), he will now be getting "washed" platelets and (washed) blood to minimize the risk of allergic reaction.  Our outpatient visit (with no extra clothes but one change for Steve) became an admission.  I left at 7:30 a.m., drove home, showered, packed the Expedition, and moved Megan to college with my Mom and Kevin.  That went very, very well, and Megan is totally thrilled with her new home in Naperville.


Wednesday and Thursday were spent pumping blood and platelets into his body, which is causing it's own set of problems.  His blood pressure became elevated, which puts him at risk for brain bleeding with low platelets.  The hemoglobin levels are okay, not stellar.  Special tests were done, and I *believe* he will be getting single-donor platelets (matched) from now on as well.  During rounding he was told the head of the blood bank is personally managing his case.  It seems Steve is a bit of a blood celebrity throughout the complex, and personally, I am happy for all the attention.


His brother Bob had driven in from Minneapolis on Wednesday afternoon and went directly to the hospital.  He stayed with Steve until Thursday afternoon, and I was grateful Steve had him there to shore up his feelings.  Bad, bad days.  A taste of freedom was exhilarating yet crushing.


Steve needed bedding, clothes, etc. so I made the trip last night and my sister met me to unload a cart full and sit with him for the evening.  He is just wiped out and so terribly thin.  He told us he did make it to the lounge and rode the stationary bike for 20 minutes (I don't understand that!); I helped him shower and get fresh clothes on, then he got into his bed and watched Brett Favre, which I know has healing powers.  We left around 8:30 and had caught him sleeping peacefully several times prior to our departure.  Platelets were up to 11 at the last CBC from 6 p.m.


Steve and Mary made a decision to begin another stem cell harvest and contacted the team.  They support this decision and Mary will take her first Neupogen shot tonight.  We have to get Steve stable and hope his numbers start coming back up.  Potassium and magnesium have also taken a dive, and his WBCs need shoring up.  Some good news is that his ANCs were pretty good.  I'm looking forward to today's numbers and some positive news.

And have I mentioned that our street has been torn up since early August? Here is today's view of my parkway as they tie in the new water main...

Nite Nite Termite

Steve actually took a picture of himself today during his Pentamadine inhalation treatment at NW.  It conditions the lungs to ward off pneumonias and I suppose cooties.  Only needs it once a month and we pushed to have it done at home in the future, versus taking "Jungle Juice," the gawd-awful Mephron neon gaggy liquid.  Nasssstayyy.

We had an organized, uneventful yet wonderful discharge today.  Megan, Kevin and I were like worker bees.  By the 7th stay, you know the system.  Double-parked on Superior Street with the emergency flashers going.  Grab a cart (Deb B, hahahahaha), and head upstairs.  

When we got to his room, one of the kids remarked immediately that his IV was disconnected.  I started crying.  See why from just a few days ago...

We were given slow, deliberate discharge instructions both verbally and in writing by our nurse and the transplant team APN.  90% of his drugs are new to us, so tomorrow I'll make a chart and we begin the next leg of our journey.  One of the drugs is $3000 a month, another $500....insurance will cover, mercifully.  Walgreens Home Health has already called, and our dear home health nurse, Cheryl, will be here around lunchtime to draw labs and check out Steve's health.  AND GOSSIP and catch up!!!  

As we wheeled the cart out of his room, we came upon a family that was clearly far from going home.  The patient was a man, he had the rolling IV stand and oxygen.  His wife and adult daughter were with him.  We all stood still for a paused moment.  The man asked, "are you going home??" Boy, that was a tough one.  We were that family just the other day, and going home is not on the radar when it's "one day at a time."  We wished them well, and good luck, and they said "God Bless You," and we returned the wishes.  And then the man said to Steve, "you look really good!"  At that very moment we entered the whooshing set of double-doors that help create the negative pressure environment of the 15th Floor.  It was a very Star Trek-ish new age moment, we were leaving that world for the uncharted waters of transplant newness, they were left behind to discover the path we just walked.  A very sobering moment for me.


Steve was basking in the sun on the car ride home.  You can't do that in the hospital.  My Mom and sister had decorated the house with some fun "Welcome Home" items, which was nice.  The plant is from Craig Lanigan & Family :-)

When we got home, he opened mail while this old bag took a nap.  Then he napped and I made THE FIVE DOLLAR DISH, DAMMIT.  Here it is, Grandma Reppen would probably be giddy to know her simple meal provided so much comfort to her grandson at this time, and so many others.


He spent the evening watching t.v. and just chillin.  Megan and I got our flu shots at Walgreens.  ($29.99 each, the pharmacist administers them, sweet!!)


And now, the best picture of all.....ZZZZZZZZZZZZZZZZZZ at home!!

He's Home

and that is all I have to say for now.

Clearance From the Tower

Today's labs show marked improvement:  WBCs at 1.7, up from 1.1 yesterday.  ANCs up to 1.1 from 0.9.

They will give him his anti-pneumonia inhalation treatment (Pentamidine) at 1, and then he is free to go home.  Some discussion about yesterday's allergic reaction to platelets, so he is now taking pre-meds ahead of products.  Northwestern will be consulting with Dr. Robert Stein, Chief of Hematology at Christ Hospital regarding Mary's A+ blood type taking over Steve's O-.  We have a nice relationship with Christ's infusion center, and they are great to get Steve in for blood, platelets, or a quick CBC.

We are Walgreen's best customers.  Today Kevin, Megan and I will get our flu shots, pick up Steve's meds, and get a sports physical for Megan as she will be a D3 swimmer next week.  Back in the pool!!

Steve is no longer neutropenic, which takes a bit of heat off us regarding diet and general home hygiene. Let the dog hair roulez!!

Man's Best Friend, Also Waiting for it.....

Cooper, our 4 year-old Chocolate Labrador Retriever, prefers Steve's side of the bed.  Poor dog will have to remember how to tuck and roll at the end of the bed once Dad is home.  Couldn't resist a gratuitous dog video, seeing as I haven't posted any still pics of the dog to date!

Wait for it......

Tomorrow will (hopefully!) be Steve's SEVENTH discharge as an inpatient from Northwestern.  We have learned to be patient with "the process."  A lot goes on, like a real estate closing, papers to sign and pass, read this, listen to that, and then Phil-the-Perky-Guy-From-Walgreen's-Home-Health shows up, a sure sign of pending discharge.  And then you are free!

Tonight Steve ate some tasty baked chicken and sweet potatoes from the Foodlife Market at Water Tower.  Then he eyed Kevin's curly fries.  Again, how do you eat curly fries after you have been yacking for days?  It's not like a hangover where grease absorbs your bad behavior!  

I hope his tastebuds get back to normal soon.  He retained some taste throughout this last cycle of chemo.   Very little is hanging on the IV stand tonight, just some magnesium and fluids.  He will come home with his PICC line and will no doubt use the lumens for some time, as he will need frequent blood and platelet transfusions at Christ Hospital or NW until he is no longer in need.

His dream is to sit on our porch and drink ice water. 

Just for Fun!!

Kevin and I headed downtown late this afternoon to chill with Steve for his last night in Streeterville. 

As we got to the north end of Millennium Park, he texted that he was having an allergic reaction to a bag of platelets.  I had Kevin dial his room, I hit the gas, and was soon connected to his nurse on the room phone.  She sounded okay, but Steve sounded like an amphibian.  I was in a total panic and tried to keep myself calm with Kevin in the car.

We parked and scurried to Prentice, where we found Steve to be fine and recovering from the event.  His nurse was not in the room when this happened, and he was able to hit the call button and verbalize what was going on as his throat was closing and his face was ballooning.  By the time Kev and I got here, the left side of his mouth and jaw were pretty big.  Remember the kid in "Mask?"  They had given him 50mg Benedryl and another agent to reverse the situation.  "Pre-meds" are given to patients that need or request them prior to receiving blood or blood products.  Steve never takes the Tylenol nor the Benedryl.  Even with a jillion gallons of O- and bags of platelets, he has only once had a reaction, a very very mild one, and that time he felt "a little puffy" like with seasonal allergies.

So, I guess he thought he would have some fun to keep us on our toes just before discharge.  He has eaten a banana and some pretzels today.  I'm going out soon to find some mashed potatoes or other num nums he might enjoy.  Please hope for a restful night for him and an UNeventful Monday & discharge!  Thanks.

Wild Times! Coming Home!

First, apologies to those of you anxiously awaiting an update.  It has been like an Olympic ping-pong match since Wednesday evening.  Again, I must try to keep Steve's dignity intact....although the devil in me is tempted to provide graphic details.  Summary:  Poop, puke, stoned.  Repeat.  A lot.  The poor guy has lost 60 pounds over time, most since 4/30.  It is amazing that the human body can take so much abuse and keep going, so to speak.

He hasn't been sleeping well, and the staff has been frantically trying to get the vomiting (bile!! mucous!!! ICK!) under control and the south end plugged.   The Zofran wasn't touching the nausea, then Compazine, then Haldol.....I'm not sure what the final solution was, but I was told it was extremely expensive and not used often.  There was concern late in the week that he may have "c-diff," so the staff started gowning and labs were done.  Luckily, it was negative, so they were able to get Immodium down his gullet and that worked like a charm.

His labs were unremarkable.  The WBCs were steady at 0.5......the absolute neutrophils were still TLTC by the lab, but seen under the scope.  We were told that engraftment was being hampered by the low amount of cells infused the first time, which was around 4.5 million, instead of the optimum 8 infused, with 2 "in the bank."  No one was sure if The Spleen was acting up either.   The risk of waiting so long for full recovery of his labs was, of course, infection.  Now that Steve was faring poorly with being so sick, it got the gears going with the doctors.

Thursday the Stem Cell Team made a decision to reinfuse him with more of Mary's cells.  Phone calls started with Blue Cross and Northwestern, just in case approval was needed.  Mary was summoned to come down to the hospital on Friday for a blood draw to make sure she didn't have any illnesses.  She did not have to have the full work-up this time, which was good.  She was given the Neupogen kit plus a "booster" for the night before the harvest, and was told her discomfort may be worse this time.  Percocet was prescribed.  Shots are to begin tonight, Sunday.  

Megan stayed overnight Friday night.  He was sick as a dog well into Saturday morning, when Dr. Altman phoned me at home with good, yet tentative, news.  Steve's WBCs had gone from 0.5 to 0.7 and the ANCs (absolute neutrophils) had popped onto the lab radar at 0.5.  She cautioned me that until she had TWO days of those numbers she didn't want to get our hope up.

I asked Dr. Altman, "what if his labs come up during the week?  Will you still infuse him?"  That was a grey area.  She said they may infuse him with *some* of the harvest, and bank the rest.  The stem cells can be frozen for up to 10 years.  That was yesterday morning.  I visited from 1-6 p.m., and Mary took over later last evening and slept overnight.  The nausea was still present, although much better, when I left at 6.  South end was good.  Still hadn't eaten anything.  Other than a bit of watermelon or sherbet here a time or two, Steve hasn't had solid food in about 2 weeks.  He has also (quickly!!) developed "chemo brain" and can't complete a sentence to save his soul.  It is difficult to converse, and we hope this passes as quickly as it came on Saturday.  At one this morning, Mary said he was wide awake and wanted to drink water, which he gulped, and in large amounts.  Uh-oh.  So she offered a few little animal crackers and he kept those down.

Now for the big news.  His labs shot WAAAAAY up.  The Stem Cell team came in and told him he can GO HOME TOMORROW!  They are keeping him today to make sure he *can* eat and keep food down.  WBC's went from 0.7 yesterday to 1.1 today!!  ANCs went from 0.5 to 0.9. Mary's harvest is being cancelled, luckily this happened before her first injection!  Dr. Mehta (Director of Stem Cell Transplantation) and Dr. Altman were both paged for discharge approval, and it's a GO.  Walgreens in Oak Lawn has been called (and I got a text while typing this) that his meds are on order and will be filled tomorrow.

We are going to bring some of his stuff home today, and will keep everyone posted as news develops, which is minute-to-minute!!!!!!!!

We are all in a state of shock!!

Again, Please Hold

Will update Saturday morning.  Megan is staying with Steve tonight to give some extra support.  He will receive more of Mary's cells (reinfusion) late next week.  Still battling nausea.  The staff is on it.  I'm exhausted.  Goodnight.

ZZZZZZzzzzzz

Steve had a really rough night and a bumpy start to the morning.  I'm still not sure how much vomiting went on in the night, but he was definitely sick to his stomach all night and the staff was trying everything possible to make that go away.  I had difficulty reaching him this morning, and was unsettled.

He was visited late this morning by our Pastor, Mike Borcherding, and our Parish Worker, Linda Bensen.  They stayed for a very brief visit and Steve took communion, which I know made him feel good.  Trinity Lutheran Church (Oak Lawn, IL) has been so supportive of our entire family, and we are happy to be members!  Thank you, Mike and Linda, for making the trip to Northwestern.

Meg and I got to the hospital around 12:30 and left at 3:30.  He was really, really out of it, sleeping soundly.  He's not in any pain, the mucositis continues to improve, and it appears he may have some sense of taste.  We got a bit of raspberry sherbet and a few bites of watermelon into his tummy, as well as a bit of iced tea.  His nurse wanted to completely disconnect the PCA, yet he was anxious about saying goodbye to pain meds (even though he hasn't had any since Monday afternoon)...she did a fine sales job of letting him know he could still get some via his IV, so that was good.  

I would imagine our visits will be short, like today, and earlier in the day as long as he is ZZZzzzzzz and not more functional.  I spoke with him tonight at 7, he was awake and watching a college football game, a great sign, and said he had been up as long as 45 minutes since we left, and had chatted with his brother, Pete.

Tomorrow I want to help him shower and/or go for a brief spin in the hall, along with some more food.  I think his mind is playing tricks on his stomach.  The mind-body connection is in full swing.

They are now giving him two Neupogen shots a day in an attempt to get the WBC mojo in gear.  His labs from the wee hours this morning were unchanged.  Let's hope things start to trend up soon without making That Spleen act up again.

This chick is going to bed EARLY tonight, not at 2 a.m. like last night, GAH!!

Bumpy Night

I got to Prentice at 6:30 tonight, and left at 10:30.  Megan spent the afternoon with Steve and said he was fine, just really tired.  Such was not the case when I arrived.  He "slept" the entire time I was there.  At first he was interested in food from outside the hospital.  I encouraged him to just try some chicken soup or canned peaches from home, just to take some baby steps with returning to solid foods.  By the time he thought about it, he wasn't interested in eating. 

Report was given just before 8, and then he started vomiting.  Mind you, this is only the third time in four months, which astounds me.  They have managed him SO well with meds.  His nurse tonight is a very nice young man who is a floater, and has never worked on the 15th floor before.  He was very gracious when I asked if there were other nurses on the floor that were familiar with Steve and he gladly found someone who whisked right into Steve's room for an assessment of his demeanor, which I felt was "different."  She felt perhaps they tried too soon to transition him back to pills for some of the meds, as moments after he took the pills up they came for round 2.  Then it occured to me...."mucous-itis".....I asked, and the nurse said it could be from a sloughing off of the throat buildup.  Gross.  Poor, poor Steve.   At one point, and I have to chuckle a bit, he said, "ya know, this really isn't THAT bad."  Dear lord, you have your head in a garbage can, wires and tubes and lights and all THIS, and you can still say it's not that bad?  I just shook my head.  His nurse had already given him his Zofran between rounds one and two, so I believe some Compazine was coming his way when I left.  I was very torn on staying versus leaving.  I'm trying to keep Kevin on an even keel, his school year is quite new and bumps in the road are not as easily navigated by him as the girls due to the age differences.  So I headed for home, only to discover the exit ramp at Cicero was closed.  How can you complain about late-night construction after being with a sick person?

So I am on edge, hoping this is just a time of adjustment for his body.  Less meds, more new cells, and hopefully a good night's sleep.  The Dilaudid drip was stopped this morning; it is still available by his choice with the button.   He is NOT in ANY pain.  The Dilaudid was disorienting him on day of the week (heck, I have the same issue since this all started, if not the last 40 years!) and was causing him to have really bizarre dreams and mild hallucinations.  Good quality sleep is a wonderful, restorative thing.  

I must remind myself....ONE DAY AT A TIME.

G'nite.

Sept 1 Update

Lots going on today!  I just spoke with Dr. Altman on the phone and she told me that she did see neutrophils through the microscope yesterday that would not yet be able to be counted via the lab study.  So we are calling the engraftment official due to the jump in WBCs to 0.5!!   The blood sample is taken at 1 a.m. daily, so all this news is old by the time labs are printed at 7 or so and I relay it to all of you.

The PCA pump may be removed at any time.  He hasn't used pain meds since Monday, the throat also continues to heal.  Sounds like there will be a lot less hanging on that IV stand when I visit this evening.

He is on his way to recovery!!

p.s.  Walgreens has flu shots, we will all get ours before he comes home.  If you are visiting, please make sure you get the injection and not the nasal mist.  Thanks!

Turn of the Calendar, Turn of Events

Big news this morning....Steve's WBCs have popped up to 0.5.  This is the threshold number they use to start looking for the absolute neutrophil count (ANC).  Production of neutrophils = engraftment.  There was talk of Steve going home when the ANCs get to 0.5 on their own.  Neutrophils are the front-line infection-fighting white blood cells.  If your body was an arcade game, a neutrophil would be Pac-Man.   (a-whuh a-whuh a-whuh a-whuh)

He slept well last night, and his throat is better this morning.  He is drinking water pretty freely, and during rounds this morning they told him they would transition him back to pills from IV meds, specifically his preventative antibiotic, antifungal, and antibacterial pills.

Two members of the staff service were still *not in attendance* during rounds.

I'm going to make a blueberry coffeecake for the staff today, haven't made it in years, it weighs about 50 pounds and should endear me to the nurses all the more.

I think we have turned the corner!!