12/27

It may be wishful thinking, but I think John's skin looks a little better after his first photopheresis treatment; he has his second treatment tomorrow and more next week on M, W and F.  His doctors think he will have at least 3 weeks of treatments.  Send good wishes his way; as soon as this works, the steroids can be tapered off and his own new immune system should begin knocking down the CMV.

Depressing blood counts is a side effect of some of his meds.  His platelet count today was 14,000.  He did have physical therapy but they didn't have him do too much so the chance of falling or bumps would be minimized while his count is that low.

Another side effect of steroids which I don't think we mentioned yet is depressing body temperature.  So even if you are fighting off an infection (or trying to), your temperature may not rise above normal body temperatures.  Until the steroids can be tapered off, John needs blood cultures every three days to make sure he doesn't have any infections.  This is a procedure that is difficult because his veins are scarred and it is painful.  Often it takes multiple sticks to get a blood sample and he needs samples from each arm.  Just one more reason why it is important for the photopheresis to work and to get off the steroids.  This is very frustrating for everyone - the nurses and me included - but most importantly it is frustrating for John and he dreads it.

Tomorrow the badgerettes and their families are coming for a couple of days; we can't wait to see them.

12/25

Merry Christmas, Everyone.  We are celebrating here in our temporary burrow at Thomas Jefferson University Hospital in Philadelphia in between winter storms.  It is a White Christmas in eastern PA.

After our walk we had a little gift exchange and John got something he wanted more than almost anything else right now - a clementine and a perfectly ripe pear (thanks Bob and Sue!)  Neutropenic diet restrictions have changed.  According the the head of the transplant unit, published research shows well washed, peeled fresh fruit is fine although John can't keep it in his room or peel it himself.  A very nice Christmas morning.  We'll continue our gastronomic Christmas with a Pu Pu platter this afternoon.  John's medical staff approves it and Philaelphia's Chinatown is only a couple of blocks away.

 The catheter was inserted in John's neck and the skin biopsy was performed without any problems yesterday.  The rash is pretty pronounced today.  The results of the skin biopsy will show if it is gvhd (which is the most likely cause).  Photopheresis begins tomorrow and has a good track record of being an effective treatment against gvhd.  CMV numbers are still on the rise so as soon as the photopheresis impacts the gvhd, the steroids can be tapered off some more and John's own lymphocytes can begin to knock down the CMV.  Keep your fingers crossed and say a prayer for us.

The blood counts are falling again so that probably means more transfusions soon.  For our medical friends, the wbc are 1.8, hemoglobin 9.5, platelets 40,000. 

John's doc cautions to restrict contact during the viral season which is intense this year; she says viruses can aggravate gvhd.  Isolation isn't difficult right now on the bone marrow transplant unit but the season extends until April.  Have  a wonderful Christmas however you celebrate.  We are thinking of all of you.

12/23

There is a change in the plans for this upcoming week.  John is still getting the apheresis catheter inserted tomorrow (Monday) but due to Christmas and short staffing, he will not begin photopheresis until Wednesday.  The plan is to receive it M and W this week, then MWF next week and then adjust the number of treatments per week as required by the results.  The point of this treatment is to alter the DNA of the T cells produced by the new immune system so it will no longer attack the proteins on John's skin which it recognizes as foreign resulting in gvhd.  Since he will be getting photopheresis several times a week, the new T cells produced by the immune system should also be disabled as long as the photopheresis continues.  In time, the T cells should "accomodate" John's proteins and stop attacking them but that will take a while.  Photopheresis generally lasts at least 3 weeks; we're not sure if that means we have to be in the hospital that whole time or if he will eventually be able to receive this treatment as an out patient.

Once the gvhd is successfully treated, the steroid dose can be tapered off more quickly letting the new immune system work against the CMV.  In addition, John is receiving 3 medications which are also part of the CMV treatment.

Tomorrow, John will be getting a skin biopsy to make sure the rash is gvhd.  John's doctor thinks that is the most likely cause of the rash but viruses in the CMV family could also be the culprit.  Treatment will depend on the biopsy results.

On other fronts, John continues to do super well in PT - walking, weight lifting, stairs, etc.  He is hooked up to so many IV meds right now, he has his own personal Christmas tree.  The physical therapist told John he never saw an IV stand with so many bags hanging on it; currently there are 5 and even more tubes with different colored clamps everywhere.  A strand of lights would complete the decorative effect :)

Blood counts are all seriously down probably as a result of all the meds.  He has had a growth stimulating factor to increse the white count and that has improved from neutropenic to 5.6.  A transfusion of red cells has improved those numbers from 7 to 9.9.  And, he is getting bag after bag of platelets; that count has improved from 12,000 to 28,000 but it has to get up to about 50,000 for tomorrow's surgical procedure.

A final bit of good news is that he has broken the 170 pound mark this week. 

12/21

Some numbers are too low and some are too high.  John's platelets fell to 19,000 so he received a platelet transfusion; they were up to 31,000 this morning.  We have to get the platelets up to about 50,000 for a surgical procedure John will have Monday morning.

The CMV numbers increased between 5-6 fold which is very concerning.  While the numbers are high, John doesn't appear to have an active infection.  A combination of three meds will be used to bring the virus numbers down and to protect against an infection of the lungs or gut.

A catheter will be implanted through the jugular vein on Monday morning so John can begin photopheresis which is a treatment used to treat his graft v host disease.  John's blood will be removed, separated, treated with a chemical and then exposed to UV light and returned to his body.  The UV light activates the treated cells and if all goes well, those cells can no longer attack John's proteins and the gvh disease should greatly diminish.  If that happens, the immunosuppressant drug being used to treat the gvhd can be cut back.  If the immunosuppressant drug can be reduced, John's new immune system can get the CMV under control.  If all goes according to plan, the gvhd and the CMV will both be under control. 

The good news is John is feeling well, is doing great in physical therapy, is eating like a champion and is tolerating all of his treatments well.  It seems we will be spending Christmas in the hospital this year and our best gift will be for these new treatments to work quickly. If you are from our area of the world, stay safe during the rain/high wind storm this weekend.

12/19

Yesterday, 12/18, was the 2 month anniversary of John's haplo bone marrow transplant.  The marrow is well engrafted - a cause for real celebration.  We have high hopes for the 3rd month anniversary on Jan 18; John's doctors say patients often begin feeling remarkably better at about that time.

The up and down pattern continues for now.  Blood counts dropped to the point where John needed a transfusion a couple of days ago; wbc are lowish at 3.7 and platelets are very low at 24,000.  Hemoglobin holds steady at about 9 since the transfusion.  John's weight is up to 167 which is still way too thin but so much better than 157 of a few days ago.  In the down category, the virus numbers are dropping,  The aggressive twice daily viral IV med schedule continues for the time being.  John is walking and exercising more and getting stronger every day.

Thank you for all of the cards, comments, emails, and phone messages.  John really enjoys keeping up with all of your news.  And most special thanks for your continuing good thoughts and prayers.

12/18

I guess the acronym SNAFU applies to this recovery.  For the past few days John's CMV numbers have gone down and up.  They're recently up; He's on a new med twice a day instead of once and we're waiting for the most recent results.  The weight has gone up and down.  Today it has improved from 157 to breaking the 160 mark.  The nurses say it will continue to swing as a result of water loss and gain which is due to a couple of the meds John is on.  Mood has varied from up and very up to low and pretty low.  It is a testimony to John that his ebullient moods are marked by the plans he is making for what he can do for everyone else when he is better and that during his sad times he is most concerned about the plans for others he has not been able to accomplish yet.  The steroids are responsible for the mood swings and as they are reduced, he is feeling more level.

Physical therapy has been added to the list of acivities to help him improve and maintain physical conditioning.  Appetite has been consistently ravenous the last several days; we look forward to sharing good times and good food with all of you once the recovery and fattening up continue at home :)

12/15

As a pre-Christmas gift to all of us - John's friends and family - I'm happy to share that John ;is feeling better, eating better (he sent me to the diner this morning for 2 milkshakes - one vanilla and one chocolate - and french fries), and getting more exercise.   He is still shedding but a lot of the dead skin is already gone and the new skin looks good.

He continues to lose weight - he lost 4 more pounds since Thursday. The new target date for discharge is this Friday, 12/21.  Even if he gets out Friday, he will need to go to the infusion center at Lehigh Valley Hospital every day to get an IV of the med he needs for the continuing CMV infection.

postscript:  maybe the milkshake wasn't such a good idea... John's pm blood sugar is 411; he got 5 units of insulin.  The steroids continue to mess with his blood counts: wbc 3.6, hemoglobin 8.3, platelets 26,000.

post postscript: John is just amazed by the incredible skill and care of and by everyone at Jefferson - the nurses, doctors, and all of the staff.  We both are.  This is a super hospital!

12/13

Well, it's been a while and things have changed.  John is getting exponentially stronger every day but he is coming from a long way behind so he is still not ready to be discharged yet.  The most pressing problem at the moment is a CMV infection which can only be treated with IV medications in the hospital.  His doctor told us this morning he is already responding well to the meds and the protocol for treating this virus is well established; but, years ago transplant patients with CMV almost all died.  So, John will be staying there until that infection is cleared up. 

Desquamation (shedding of skin) continues.  I wish he could hook part of his skin on a peg and crawl out of it like a snake so he could get it over with.  There's still a lot to go; it's amazing how much skin we have.  He's itchy all over while this is going on; we're going through a tube of aquaphor a day trying to moisten him up.  And, I was wrong about the top of his head not being involved.  That's shedding too.

Tuesday night John had a lot of chest pain.  Many, many tests later it was determined he did not have any heart involvement.  The doctors said heartburn can present with the same symptoms.  He has begun eating again so maybe he just did a little too much a little too soon.  Jefferson's food and selection are good so there is plenty for him to choose from.  In addition, he sent me out for McDonald's fries and a cheeseburger which is ok as long as we ask to have it cooked fresh so it hasn't been sitting around.  Still hasn't gained any weight.

Still having problems holding on to his sodium.  The hospitalist says there are lots of reasons why that is so; until it is resolved, he is supposed to drink gatorade with his water.to get some extra sodium.  (Side note, John's dr told us Gatorade was developed for a Florida university football team to replace electrolytes lost in practice.  Guess that's why it's "gator"ade.)  Interestingly, there wasn't too much potassium when I checked the label.

The high doses of steroids are wreaking havoc with John's blood sugar.  He is now tested 5 times a day and gets insulin when it is too high.  The steroid dose was decreased on Tuesday but he is still having some high blood sugar readings.  John's doctors say the steroids also make his muscles weaker so it is important to walk and get out bed and do his exercises as much as possible to try to retain as much strength as he can.  And the steroids can cause blood pressure readings that are high and/or low.  Which all begs the question, who would take this stuff unless there was a very good medical reason?

Ankles are still puffy but improving.  He is supposed to keep his feet higher than his heart which is an interesting posture... His skin is breaking down from being in bed so much.  He got some special lotion and an air mattress.  Seems to be working,  His nurses are plying him with senna, miralax. some other lax; hopefully there will be success on that front soon too.  All of his blood counts are down but he is still not neutropenic - wbc 3.0; hemoglobin 9; platelets 49,000. 

John is definitely sounding stronger and feeling better each day.  Thank you for keeping us in your thoughts and prayers.

12/9

Today John was able to eat all of his meals.  He and the nurses have the timing of the zofran and meals figured out to make that possible.  So he had french toast for breakfast, roasted chicken for lunch, and a crab cake for dinner.

 His doctor plans to cut the steroid dosage in half on Tuesday and then see how the gvh responds and what happens to the CMV numbers; he still doesn't think discharge is likely until the end of the week.  That works for us; we'd like John to be in as good shape as possible before he comes home.

The blood counts are down a little bit since yesterday.  The platelets are at 77,000 so the anti-coagulant may be discontinued soon.  The ultrasounds (of everything) show no clots; John is all clear on that count.

John had a walk and a shower today - both good for exercise.  The shower followed by aquaphor lotion encourages the dead skin to fall off.  There's really pink baby-soft skin underneath.  John will literally be a new man before he leaves the hospital.

That's the news for today; things seem to be improving a little every day :)

12/8 Part II

Just an update tht John is having an ultrasound of his right arm which is a little puffy to check for blood clots.  He has begun a prophylactic dose of anti-coagulant until we know.  The anti-coagulant is an injection to the belly.  There is seriously not a square inch that hasn't been stuck by now.

CMV (cytomegalovirus) is positive now.  This has at least an 80% chance of happening in transplant patients.  The therapy is a change in the anti-viral medication.  The antibiotic is also being changed from bactrim to two other drugs one of which is penicillin because bactrim in combination with all of his meds and conditions can suppress blood counts.

John was able to eat a little more at dinner tonight and took a walk this afternoon.  He thinks he feels a little better today; hopefully he will be feeling much better before he is discharged later this week.

12/8

Hydration working; elecrolyte numbers almost normal.  Rash improving at least a little bit.  John even thinks he feels a little better today.

The dehydration could have been at least partially due to "insensible loss" through the rashy, peeling skin.  Rehydration is accompanied by drops in the blood cell counts.  They may have been concentrated in a smaller volume and now that more fluids have been introduced the concentration/ cell count is lower.  The counts are still ok even though they are lower - 4.2 wbc, 9.2 hemoglobin, 92,000 platelets.

Just a tidbit from John's doctor in case you ever need to increase your sodium and lower your potassium at the same time -  Regular Campbell's chicken noodle soup (not the low sodium version) will increase sodium without increasing the potassium.  Most foods high in sodium are also high in potassium.  Interestingly, John had started requesting Campbell's chicken noodle soup a couple of weeks ago before we knew about any of this; he was just hungry for it.  I guess we should trust our guts.

12/7

This is some tough sledding.  John was readmitted to the hospital last night after our weekly doctor appointment.

He is dehyrated and has graft v host disease.  Since John's cancer first showed up in the skin and the therapies, chemo and treatments all affected the skin, John's doctor said if anyone was ever going  to develop gvh as a complication of transplant, it would be John.  He was right; looking for something positive about this, the gvh may well improve the graft v cancer effect in the future.

Dehydration affects electrolyte balance and kidney function.  That's reflected in his dropping sodium, rising potassium, and elevated creatinine levels.  He has been working very hard to drink more but hasn't been able to get rehydrated on his own.  GVH adds an additional challenge.  The new immune system is "attacking" the "John" proteins in his skin - he looks like he has a terrible sunburn and now his skin is sloughing off.  Skin is a barrier to infection and helps trap moisture so losing it makes rehydration even harder.

John is getting IV fluids and steroids in the hospital.  The steroids should help get the gvh under control; maybe he isn't absorbing the oral steroids and the IV therapy might kick start a recovery.  John's blood sugar is high; his doctor says this is most likely a result of the steroid therapy.  That is being treated with insulin; finger tip pricks 5x/day have been added to his list of treatments/procedures.

The first 24 hours haven't been restful.  A picc line was installed because it was too hard to find a vein to draw from for the many blood tests.  He has had 2 chest x-rays; the first one revealed a coiled up portion of the picc line. The line was forcefully flushed to try to straighten out the kink; the second x-ray results show it was a successful maneuver. Yay! Since the pic is straightened out, the IV line can be removed and the picc line can transport the meds, fluids and be used for blood draws.  John has had a kidney function test - all is good; hydration should take care of the electrolyte and creatinine problems.  A cat scan shows the lungs are stable or even a little improved.  No temps and no infections. 

John has gained 4 pounds in the past week (which still leaves him about 15 pounds below his high school weight).  He has been a little nauseous in the hospital although he is doing his best to eat and drink.  Zofran reduces the nausea but we haven't gotten the timing just right yet so he can eat without discomfort.

We'll be here for at least the weekend.  If you're looking for something to do this weekend (because everyone has so much free time at this time of year...) rent the movie A Cat in Paris.  We guarantee you'll love it.

12/4

So, John is bright red all over (except his head) and by tonight the "rash" has become quite painful.  The PA and nurse practitioner think it is most likely graft v host disease but just to be sure, they did a skin biopsy.  In case you're wondering, that is a procedure where a topical anesthetic is injected to numb you to the third pencil size diameter tube of skin half an inch deep that is being drilled out of your arm.  Judging from the expression on John's face, it looked like it pinched more than a "little bit."  The  results of the skin biopsy can be ambiguous and unable to totally rule in gvhd or rule out a drug reaction.  Nonetheless, it was good to get checked out and to begin the treatment which is a massive dose of steroids to reduce the rash, pain and itchiness.  An additional upside of the steroids is their potential to increase John's appetite; a downside is their potential to make John a little physically manic and to interrupt sleep.  We see the dr on Thursday so we'll find out in a couple of days how the steroids are working.

What is going on here?  For the literati, it is the new immune system saying "Hello!  Here I am!"  For the scientists, antigen-presenting cells in the skin (and some other organs like the liver) are still showing John's proteins which the new immune system recognizes as foreign now hence the new immune system attacks John.  It's important to treat the gvhd early so it doesn't progress to a more advanced form that does more damage and is harder to treat.  Seems likely that John's problem has been caught in plenty of time; we and the medical staff are optimistic.

We're told gvhd is a very common complication of transplant.  Putting the best possible face on it, our nurses tell us it is a good sign that the new immune system is working :)

12/3

Another step forward and another step back... John's horrid SPS suspension med that binds to his potassium has worked and he doesn't have to take it anymore.  That is the step forward.  But, he has developed a raised red rash over most of his body; we have to go to Philadelphia tomorrow so his doctors can determine if it is graft v host disease and that determination may require a skin biopsy.  That is the step backward.  If so, treatment would include steroids and maybe other measures.  We will keep you updated.  In a sense, the biopsy (if necessary) is probably nothing compared to what he has already been through.  But, in another sense, it is one more procedure that at least sounds unpleasant on top of what he has been able to tolerate and surmount so far.  Please say a quick prayer for him.

11/29

It's been a long time between posts but there is some news to report after today's doctor visit.  All of John's blood counts have improved - 7.6 wbc, 12.1 hemoglobin and 118,000 platelets.  These counts are all below normal but they are all better than they were a week ago.  Petichiae have appeared on John's lower legs but his doctors do not seemed overly concerned about this development.

John is a little dehydrated and has lost about 60 pounds - he is down to my high school weight now...  The doctors offered appetite stimulants but not enthusiastically because of their side effects.  For now John will do his best to get more fluids and calories on his own and we'll see next week whether that approach is working.

John is still really tired; his doctors recommend doing what he can but say recovery is very individual and somewhat dependent on what treatment preceeded the bone marrow transplant. John was receiving chemotherapy until a month before his transplant and has had 26 meds during this procedure so his recovery is going to require significant time.

The potassium and creatinine levels are elevated again; kidney function is also out of whack (please excuse the technical term).  Dehydration and/or tacrolimus could be affecting these levels.  John didn't have to take the tacro tonight until the test results come back; but, he had to restart the vile vials of medicine to bind to and lower the potassium.  Ugh.

The newly engrafted stem cells are doing their thing (hence, the blood cell count improvements).  Donor #1 seems to be dominant - no one knows who donor #1 is but this could never have happened without the help of all three of our amazing sons and their families.  John's doctors describe his developing immune system as that of an infant; it should take about a year for it to become functional.  In the meantime, he is supported with anti-bacterial, anti-viral and anti-fungal medications.  Once the doctors determine he is ready, he will receive all of the childhood vaccinations again.  On average, that's a year out from transplant so we'll be keeping him as microbe free as possible until then.

Progress is painfully slow but there is progress.  We are hoping to report in another month that appetite and exercise are improving.  Thanks for your interest; we will update you after next week's dr. appointment.

11/23

We hope everyone had a wonderful Thanksgiving; we certainly got news for thanks.  John's bone marrow biopsy results show complete engraftment of one of the stem cell donations; we don't know which one yet.  And, there are no cancer cells in his marrow.  This is exactly the result we have all been hoping for.  There will be regular follow up doctor appointments and tests; this initial biopsy result is excellent, perfect and we are very thankful for these results.

We are also thankful for all of the good thoughts, prayers, positive vibrations you have been sending John's way; and for the phone calls, text messages and cards to lighten the mood through some trying times; for the days spent in the company of good friends - most recently Nancy, thank you! - and for the audiovisual equipment from a group of old friends and comrades in arms - you know who you are!

One of John's limitations is that he cannot be in rooms with live plants which means in our house he is limited to the bedroom, living room and bathroom.  If you've never been here you might wonder why I don't just donate or rearrange a couple of houseplants so John can get to the rooms with the tv's.  If you have ever been here, you know most of our house could double as a conservatory with uncountable numbers of plants some of which are bigger than any of us.  John's most recent gift will eventually migrate out to his office (full of plants) but for the time being is set up in the living room so he can stay current with what is happening in the world.  Too generous but so appreciated!

John's last dr appointment showed high potassium; he has to drink a vial (which is vile to him) every night of a medication that binds to the potassium to lower his levels.  He had some blood work done this morning to test the potassium level.  We are anxious to learn the results so we can discontinue that med tonight if possible.

In addition to our wonderful friends, we want to give a special shout out to our wonderful family this Thanksgiving weekend.  We have been able to visit with the families of John's brother and cousin, the families of our children, and (via the phone) my family this week.  Seeing our granddaughters has been a special treat and so far, no ill effects for John and his new immune system.

11/20

We missed the one month anniversary of John's bone marrow transplant two days ago, November 18.  It is hard to believe that one month ago, John had finished radiation, T-cell infusion, chemo to kill the T-cells and was having a day of "rest" in preparation for the transplant.  Now, a month later, he is home and making steady progress.  The fevers seem to have abated (knock on wood) even though we are in the midst of cold and flu season.  Still tired and weak without much appetite or activity but we hope to report serious improvement in those areas a month from now.  John's dr has said the prep and transplant would knock a 20 year old down so it seems John is doing at least as well as can be expected. 

John hasn't been neutropenic since his original discharge but we did learn that most of his WBC count is neutrophils providing some very limited protection against bacterial infections but none against viral and fungal infections.

We had a wonderful weekend with Michael and Meredith and with John's brother, Bob, and sister-in-law, Sue.  We are looking forward to a wonderful holiday weekend with Seth, Rebecca, Annabel, Eliza, Zacchary and Sharon.  It will be a true Thanksgiving.  Now if we can just find a way to have company and keep John's recovery on track...

Happy Thanksgiving, everyone!

11/18

Many thanks are in order to our good friend for a delicious lasagna delivered Thursday night and for visiting all day Friday with John.  Her daughter, (also instrumental in the lasagna delivery) is currently enrolled in an A&P class and we had a lively discussion Thursday night about SIADH - a  complication John is currently experiencing and which is hopefully on its way to resolution.

Friday night Michael and Meredith arrived from Boston for a long weekend.  They are helping with a bunch of chores from getting snow tires on the truck to a mystery project involving the "Ninja" - a nifty chopping device recently acquired to help quench John's craving for shaved ice when the mucositis was really bad.  It's very effective and very sharp (don't ask how I know...) in case you're considering one.

John is embarked on his own to-do list which includes trying to eat and walk a little bit more.  He started with half a waffle this morning.  Later today I'd like to take him for a short tour of the front yard where our good friend, Efrain, has been chopping down and mulching part of the hedgerow wilderness.  He has also planted more blackberries as well as red and yellow raspberries and seedless concord grapes.  So, you all know where to visit next summer when the fruit will be in season and the jam-making will be in full swing.

John's temps go up and down but haven't hit the magic 100.4 mark which landed him in the hospital late last Monday night.  We are hoping to keep it that way with all of your positive thoughts, prayers, good wishes - and lots of hand washing.

11/14

A decision was made late this afternoon to discharge John after all.  His temp is down, his cat scan shows improvement, and his sodium level is up a little bit.  So, thanks to the help and speedy driving skills of Ron Young (thanks again, Ron!) we were able to pick John up and get him home a little after 10 pm.  There isn't a definitive answer on the cause of the fever which landed John back in the hospital in the first place but the suspicion is that it was viral in origin.  So the vorconazole is upped from a prophylactic to a treatment dose.  We see the physician next week (and hopefully no emergencies pop up that have us seeing him sooner) and will learn how everything is progressing.

John had a bone marrow biopsy before he left the hospital.  We are both excited and nervous about the results which will show whether the transplant is effective against the MDS and will also show whose immune system is engrafting.  Michael and Zacchary both donated stem cells so one of their immune systems could dominate or they could both engraft; waiting to learn the results of that sibling rivalry!

John is tuckered out with all of these treatments, meds, procedures and trips to Philadelphia.  He should be catching up on his sleep today under the watchful eye of my cousin, Lauren, who generously volunteered to drive up from the Harrisburg area to spend time with us.  Thanks, Lauren!

It's going to take a while but we are looking forward to continued progress and improvement in all arenas including appetite.  John is down to his high school track days weight and could use just a little bit more padding.  Maybe we can tempt a few extra calories into him at Thanksgiving dinner.

Thanksgiving could not come at a more appropriate time this year.  We are thankful for the advances in medical technology, treatment, research and the training of fantastically skilled and empathic medical workers, for all of the encouragement and help of friends and family, and for the kindness of strangers.  Thank you all; we couldn't do it without you; and, we'll be invoking your names next Thursday and every day.

11/13 update

For those of you with a medical bent, John is being treated for SAIDH.  For the rest of us, he is being treated for a hormonal imbalance that makes sodium levels too low resulting in weakness and headache and potassium levels too high.  Part of the treatment is restricting fluids.  No news yet on the underlying cause.

Temp is still elevated so John is not coming home tomorrow; keep your fingers crossed for Thursday.

11/12-the good, the bad and the ugly

The good is that John's cough from the mucositis is finally slowing down and he is getting a little bit of relief.  Still haven't achieved the goal of an undisturbed night of sleep in a prone position but that at least seems to be a direction he is moving towards now.

The bad is that his temp was high enough tonight that the doctors readmitted him to the hospital.  Most of you know how much Mrs. Honey Badger loves to drive... and merge... on long trips...on highways...at high speeds,,, late at night... in the dark.   John's gentle and persistent passenger seat driving and strong tea got us here just fine.

He will be getting a chest x-ray, nose swab and lots of blood tests to try to identify why the temp is elevated.  All we know right now is that his temperature IS still elevated (100.7) and so is the potassium level.  Right now treatment is a bag of saline with lasix.  Waiting to hear the results of the other tests.

The ugly is today's weather; it's grey, rainy and cold in Philadelphia which is, perhaps, just as things should be in November.  Time for all honey badgers to be curled up in their home burrows. 

11/11 - first week home

John has been home a little over a week now.  At his check up last Thursday, all of his counts - wbc, hemoglobin, platelets and ANC - are improving.  He's still pretty tired and weak which is attributable, at least in part, to mucositis recovery.  No longer open sores and painful swallowing but still overproduction of secretions that cause frequent coughing and gagging spells.  Laying down makes it worse so John is spending a good part of every night sitting up in a recliner.  This too shall pass and we're looking forward to the first night he can sleep through the entire night in bed.

He has ordered some new glasses (think Dr. Evil or Despicable Me; I'm not even sure those guys wear glasses but somehow these frames remind me of those characters) with help from Barry Brobst, optician extraordinaire.  And, we got down for a short visit with Aunt Miriam this weekend for a pleasant afternoon outing.

Our next doctor appointment is this Thursday and we expect to get continuing good news.  We'll keep you updated.

11/6 - did you vote today? The honey badger did!

With Brother Bob.

It's been a while so let me fill you in on John's progress.  He was discharged, Friday, November 2, 2012.  This was a bit of an earlier discharge than usual because he engrafted quickly and was so motivated to do everything he could to be strong enough to come home.  John's brother, Bob, flew in from Idaho for the weekend.  He was hoping to visit John in the hospital but was delighted to be able to spend the weekend with us at home.  He was a tremendous help doing yard work, minor repairs, story telling, old home movie viewing, reminiscenses and more as we settled John in for his continuing recovery at home.  Our son, Michael, was also down for the weekend and was an all around helper and supporter as well.  Our friend, Susan Gelinas, came along for the trip home; so glad she was there for company on the way down and as partial pack horse on the way home.  The amount of stuff you accumulate during a nearly month long stay in the hospital is amazing.  The transition could not have gone as smoothly without all three of them.

With Son Mike.  You wouldn't want to see this guy in a dark alley.

The first weekend at home was touch and go.  John experienced fevers nearly high enough to necessitate a return trip and potential rehospitalization on Saturday night.  Fortunately, the temp started going down in time to avoid that.  John is on a boatload of meds and we have made a couple of errors along the way forgetting to refrigerate the tacrolimus and giving one magnesium plus protein pill 3x a day instead of 3 pills 3x a day.  In spite of all that, he got a great report at his first out-patient visit yesterday including a white count of 3.5 and ANC over 2 so he is still not neutropenic.  He was, however, way too low in magnesium (probably due to getting insufficient meds as noted above) and needed a magnesium infusion - which took 2 hours; ugh.  We didn't get home until after 8 pm and he was remarkably calm as I figured out lane switches in the dark.  His next dr appt is this Thursday where we hope to get more good news and to be able to get home in daylight hours.

The hiccups are gone (yay!) but the cough is still nagging and most persistent at night lying down.  He will get a repeat cat scan to make sure the pneumonia isn't staging a come back.

He had a lot of trouble sleeping but is beginning to be able to nap longer periods throughout the day and night.  Still hasn't made it through an evening in bed; he's usually up and out on the recliners in front of the wood burning stove several times a night but that is getting less frequent at least.  Hoping he will be able to make it through a night of sleep in bed soon.  Speaking of wood burning stoves, he has taken to loving very warm temperatures; we will make good use of our huge stash of split wood.

Initially, he had lots of interest in many foods that haven't been available to him for a while but could only handle a bite or two at a time.  He is beginning to recover his appetite and we must thank all of our friends who contributed delicious baked goodies (Jim and Nancy), soups (Sue and Martine) and homemade lasagna (Martine) to help make as relaxed as possible homecoming.  We've been living off the fat of the land but finished everything tonight.  Thanks to Harry and Terry for keeping the homecoming hilarious with their care package of honey badger and Heinz cards and goodies.  Thanks to all of you for your care, concern, prayers, good wishes, cards, phone calls, visits and more.  You have really kept John's spirits up and helped him move through this difficult and miraculous time.

The immune system is still fragile and developing.  He can have company but no one who is at all ill and no children who have received vaccines within the last 30 days.  Frequent and vigorous hand washing seems the best way to avoid overtaxing his immune status.  If you have had a flu vaccine, that is ok because it is not a live virus.  Energy reserves and strength are limited but he is very good at seeing what needs to be done and setting one of the rest of us on the job...  He did go for his first local drive today but was pretty tired by the time we got home.  No visiting public spaces with lots of people yet; and, when it is necessary, like a dr's appt,  he has to wear a mask.  Visitors ar home are ok; just let us know if you would like to get together in Neffs; he hasn't lost any of his gregariousness although his staying power isn't quite up to snuff yet.  Ankles are still a bit puffy but greatly improved.  White petroleum jelly has worked miracles on his dry lips and fingertips.

I think we have turned a corner and look forward to his continuing speedy and amazing recovery.  Still don't think we will be up to joining Seth and his family in Hawaii in March but are looking forward to visiting with all of our boys and their families around Thanksgiving; we have, as usual, a lot to be thankful for.

John voted by absentee ballot before he went into the hospital because we didn't know what his status would be today.  Hope you all made it to the polls too!

11/1

All kinds of excitement here today - a generator accident at the hospital resulted in a diesel spill and some of the patients had to be evacuated.  John's floor did NOT have to be evacuated, thank goodness!  We thought that was quite enough drama for one day but there is another development.  One of John's medical staff is recommending him for discharge tomorrow (Friday) instead of Saturday.  Still to be determined but this could actually happen!

10/31 Happy Halloween!

More good news!  John's wbc count yesterday was 10.4 and his netrophil count was way over 1000 (1.0) The drs have discontinued the leukine and his wbc count was still at 10.0 today and the neutrophils were over 1000.  As long as he can maintain a neutrophil count above 100 (0.1) and everything else stays in place, he can come home Saturday - this Saturday, Nov 3, 2012.

Still fluid retention although kidney function has returned to normal; letting nature take its course - no lasix for now.  The hiccups are finally responding to the medication and the treatment for pneumonia should be completed before John is discharged.

You have all been incredible incessionaries with the powers that be; please keep up all of the prayers, positive thoughts.

Mike and Zacc in "A Time to Harvest"

Mike here.  It's been nearly two weeks now since Zacc and I wrapped up our donating.  I wanted to share this time lapse of our last day donating stem cells.  Recap, there was one day of white blood cells and two of stem cells.

On this last day, the Nuepogen was starting to make my hip feel like I had slept walked and become a contortionist for Cirque du Soleil.  It felt more like a muscle pull than achy bones.  It had me limping everywhere and nearly going into sidewalk rage with a bikers trying to pass me - they really shouldn't be there, right?  Zacc was probably having side effects too but we know his pain tolerance is a bit excessive / strange.  Did you hear he laughed as they did the marrow biopsy on him to make sure he could donate a few weeks ago?  He also opens beer bottles with his teeth, which I tried years ago and only recently did the grooves in my teeth go away.

 

This is Carolaan's favorite part when the first stem cells hit the bag almost like an explosion.  Wait for it.

Carolaan was my nurse and Abbie was Zacc's.  Tammy kept a watchful eye on both of us.  Inevitably with male siblings it turned into a race.  The nurses reassured us this was about quality but being men we knew it was really about quantity.  Residents were making rounds, and we explained we were just trying to see who had the "biggest donation."  Happy to say that made even the shiest future doctors laugh.  Did you know that Nuepogen also has the side effect of making bad jokes?

It's pretty cool seeing 8 hours condensed to a little over a minute.  Zacc and I had pretty well become one by this last day.  You'll see we read (my book was 1/10th the size of his), slept, and even relieved ourselves at pretty much the same time.  Lesson learned, don't wear boxers with a button fly when you only have one arm; and yes, this time the camel couldn't hold it.  We even blew veins together.  Zacc's went first.  Our super staff quickly shut down his machine and stuck him again.  As I was thinking there really should be a euphemism for "blown vein," I started feeling a pressure building in my arm too.  So, after they found a fresh vein with Zacc they did the same with me.  My favorite part is watching the stem cells slowly collect in both our bags.  In keeping with my food analogies to blood products, I'd say donated stem cells look like Campbell's Tomato Soup

After a long day of donating and over a week of being dry, we were happy to get back to abusing our livers in ways they were used to.

With our donation day done, I tried walking without the limp but just ended up looking like I took walking lessons from John Travolta circa 1977.  So, Mom found out the hip was acting up, but it would go away once the Nuepogen injections stopped.  We went up and saw Dad with Mom but soon it was time for trains, taxis, and buses to call our names.  Before leaving, we went out to dinner with Mom at a nearby bar.  It sounds like those bags of stem cells are doing the trick for dad and we look forward to his numbers continuing to climb.

10/29

All of your good thoughts, prayers, positive energy (and Michael's and Zacchary's stem cells) are working; John's white blood cell count today is 4.1 and the neutrophil count is over 1.0  A new wrinkle and possible complication is an ambiguous result on a chest x-ray; a cat scan is being ordered to determine if John has developed a fungal infection or possibly aspirated some Boost or water.


If (and that's a very big "if ") John's neutrophil count remains at 1.0 or higher, if the fluid retention problem disappears, if he can drink enough to stay hydrated without IV fluids, if PT confirms that John can walk and do stairs and if the chest x-ray/cat scan do not reveal any new problems, John could be discharged as early as this weekend.  That's an absolute best case scenario but if not this weekend, then soon.

John has managed storm preparations from afar.  He planned Operation Generator with Kevin Pletz - the best electrician in PA - which was delivered and set up last night (thanks again, Kevin!) and has generated a long to-do list of tasks for me to complete prior to the storm.  Happy to report that the missions have been accomplished.  We are as ready as we can be to ride out these literal and figurative storms.  Thank you for your continuing support and please continue prayers and good thoughts that there is no fungal infection.

10/28

In between storm preparation, Audrey Mathison and I are here visiting John; depending on the severity of the storm, it may be a day or more before I can get here again.  More good news!  John's wbc count was 0.09 on Friday, 0.4 on Saturday and 1.8 today!  The counts are improved by a white blood cell colonizing med John is receiving.  At some point, that medication will be discontinued and we will see how John does on his own.  The counts will diminish for sure when the med is stopped but John will be closer to discharge when he is growing them on his own.  Discharge is now a visible light at the end of the tunnel; it may be a long tunnel...or not. 

Hard to believe John has already been here 3 weeks.  Within the next week or so, John will have a bone marrow biopsy.  Among other things, the results will show whose (Michael/Zacchary) immune system is engrafting and in what proportions.

John's most pressing current complications are really dry skin, significant fluid retention ,hiccups that are constant and mucositis still causing trouble eating and drinking.  He is looking pretty magnificent having now really lost all of his hair and beard; Mr. Clean, eat your heart out.  In spite of all, we can tell how improved he is by attitude and the agenda he is developing.  Attitude-wise, he is well enough to be really sparring with his nurses.  Agenda-wise, he has prepared a long list of action items for me to do to prepare for the oncoming storm - learn to run the generator (thank you, Kevin!), move the plants off the deck, check the storm pipe, etc.  Two days ago there would not have been enough energy to make all these plans.

Stay safe everyone; we look forward to reporting more progress in a few days.

10/26 - there are white blood cells in there!

Thursday John received IV immunoglobulin to act as an immune system of sorts until he can sprout his own. There is also ongoing mucositis; one of John's nurses had the great idea of providing a suction tube to help clear the thick secretions AND she put the open end of the tube inside a latex glove when it wasn't being used; this eliminated the annoying and constant suction sounds.  So nice to have caretakers with experience delivering physical and emotional support.

Today, Friday, John's mouth is improving; he was even able to use a lozenge today to help relieve dry mouth.  John's skin is dry and itchy but there are no lesions or sores.  The radiation sores on his hands are kind of scabbing over and beginning to look a little better.  The hiccups are still a plague and the thorazine used to treat them makes John drift off mid-sentence; this may be a bit of a blessing in disguise since he is at least getting a little sleep.

John has popped a fever the last couple of nights; more blood draws but so far nothing has cultured out.  The fevers seem to resolve on their own so no infections or complications so far.

Still some fluid retention but the compression stockings are off.  No more GI symptoms but he really hasn't eaten for the last several days either.  John is still a real trooper walking the halls, elevating his feet, sitting in the chair, and working hard to get down the three Boosts a day - the goal his medical team has set for him.  For the first time today he mentioned coffee; still not ready for that but good news that it is sounding appealing again.

Anti-rejection drugs, lasix, antivirals, antibiotics, antifungals, zofran, compazine, IV fluids, platelets, red blood cells, thorazine, baclofen, aquaphor, Boost, moisturizing nasal and throat sprays - these are a few of our favorite things these days.  And they are often all hanging from the IV pole, being swallowed, and being rubbed on at once.

But, I have saved the really good news for last.  John's white blood cell count today was 0.09!  He has a long way to go (it's not considered engraftment until neutrophils - one kind of wbc - measure at least 1.0) but these are the first white blood cells since John received Michael and Zacc's stem cells last Thursday night, 8 days ago.  Once the wbc count start to increase, a lot of these symptoms will go away.  This is today's great news and what we have been waiting for.

Thank you all for your encouragement; we are really happy to be able to share this great news with you.

Entering the Honey Badger's Burrow

So, there's a certain protocol to entering "The Burrow" AKA Dad's room in The Bone Marrow Transplant Unit at Jefferson Hospital.  Zacc will be your guide.

Here we are at the door.  You hit the button and then wait for 15 seconds for the yellow light to turn off and the doors to open.  How about Zacc's classy lap top bag?

With your 15 seconds over (which always feel longer than 15 seconds), we're ready to enter the air lock room.

OK, the first door closed behind us and now we've got another 15 seconds to burn until the yellow lights turn off.  Zacc read a book to pass the time.

OK, with War and Peace put back in his stylish bag, Zacc is ready to open the second door out of the air lock room.

Zacc's leather man purse has served him well but now it's time to put it in the locker so it doesn't make its way to the black market (leather satchels are believed to be aphrodisiacs in the Far East).

Here we are at the wash station.  You have to soap and water it for at least 15 seconds.  Microbes and bacteria are known quitters on the 16th second.  Everyone gets their own soap packet with brush and pre-loaded soap.  Insider's tip: Open this package before you get your hands wet.

Now we're ready to enter the Bone Marrow Transplant Unit.  We looked like trustworthy guys so the nurses let us in on the top secret door code.  That or they wanted to keep working instead of playing doorman for us.  I still think we looked trustworthy.

And here we are at the Honey Badger's door.  Before entering, you have to don a clean gown, gloves, and mask that Zacc makes look so good.  When we leave The Burrow, the gown goes into the laundry, gloves come off for another washing inside Dad's room, and the mask comes off after leaving.

As you know, the accumulated effects of the various cobra poisons (chemo and radiation) are taking their toll.  We're happy to say it doesn't look like our stem cells will cause host vs. graft disease.  Please keep Dad in your thoughts.

10/23

A couple of days ago, John's doctor told us things would get worse before they would get better; very sorry to say he was correct.  The mucositis has gotten worse; John got a morphine pump.  It has definitely helped but swallowing is still barely possible and speaking is difficult.  John's nurse says IV feeding won't be necessary if he can get down 2 or 3 Boosts a day; he's trying.  Doctor C says we can begin expecting some improvement between Thursday and Sunday.  Thursday John receives IV immunoglobulin to provide some basic protection until his new immune system begins to function; that may contribute to some improvement in how he feels.

Of all the annoying and exhausting complications, John has a case of the hiccups that is lasting for days.  This happened a couple of years ago as the result of some chemo.  It is a side effect of one of the meds he is currently taking.  Still being treated but they just keep on keeping on.

Tonight there are some blood clots in the bladder.  That can be a side effect of the chemo used to kill the T cells which happened last week.  But, a delayed reaction is taking place now as well.  For now, the treatment is lasix and if you are reading this, please say a prayer or send a thought for it to work.  Ankles are swollen too so it would be just great if the lasix could kill both birds with one stone.

Also, as predicted, John's hair has started to fall out and he has some pretty impressive facial hirsuteness to lose.  Hoping to get the hospital pro to shave everything off.  We have some concerns (which are reasonable given both of our lack of hand steadiness) about trying to do the shaving ourselves while John has absolutely no immune system.  A nick is really not what he needs just now...

John is receiving lots of transfusions of platelets and blood.  Many of you have asked how you could help.  If you are well and able, making a donation to your local blood bank to benefit other patients who need it would be fantastic.  

Michael was limping quite a bit after the stem cell donation last week; he was having some significant hip pain.  Happy to report that he is feeling much recovered and that Zacc is also well post donation.  Watch the blog for their next posting; I don't know when they will have time to put it up but there is some funny stop action stem cell collection drama to watch when they do.

Many thanks to all for the kind thoughts, prayers, deeds, and cards.  Special good thoughts for strength and recovery to our Blue Heron friend who has just been diagnosed with AML,

The Awkwardness of Cancer; or, There's No Lipstick to Put on this Pig

In the week preceding coming here, a local hospital in the Lehigh Valley was touting its cancer program on the radio.  A male voice announces that,”1 in 3 people will be diagnosed with cancer in their lifetimes.”  It goes on to say that “if you are one of the one in three, “you should contact them immediately.  They will be with you, every step of your journey.” One thing cancer is not is a journey.  Life may be a journey; a cancer diagnosis is more an invitation to do battle in hell. Who goes on a journey, with the very real expectation that they will die if they don’t and possibly die if they do?  Personally, I’d avoid that journey. Come to think of it, cancer is more limbo than anything else. 

It seems that people are made awkward by cancer. The etymology of awkward sees the first syllable meant “to go in the wrong direction.” That said, the presence of cancer reduces us to some banal stuff.  And, the banal stuff is not limited to well-intended, genuinely concerned family and friends; I’ve found it all over the oncology offices.  “Think positive thoughts.” That’s a good one.  First of all, no science supports the claim that positive thoughts mean anything in regard to getting better. Second, if I don’t think positive thoughts and succumb, well, I guess that was my fault not that of a pernicious, unrelenting, disease.

“Look at cancer as a blessing; you will see the world in a different light.  Well, I guess that’s true, but if you haven’t discovered to “live the day”, that mortality afflicts us all; that we all die then I’m glad I only encountered you in print or TV. I suppose if anything, I can identify with Meursault in The Stranger as he looks up at the night sky the night before his execution and finds a certain calmness.

Then there’s the psycho/social worker, “Are you depressed? Anxious?.”  Duh!  No,”I’m an escaped mental patient with a history of homicidal thought and aggressive behavior.”   “OK, not depressed.”

“1 in 3 people will be diagnosed with cancer in their lifetimes.”  I wonder how many of the one in three survive let’s say ten years beyond diagnosis with  some quality of life?  Ten years seems a decent stretch to fully enjoy mortality.  (If I were negotiating this with God, I’d start at 30 and hope to settle for 15.)  The main thing is that we tend to equate, with some justification, cancer with death.  That said, a friend diagnosed with cancer is a stark reminder that wherever we go death is there.  The good news is that life is there as well, as long as we permit it to triumph in every year, month, week, day, hour minute, and right down to the second until we breathe no more.

10/21

So, there is a joke in here somewhere; the punchline being ask the same question to three different people and get three different answers... Today John's doctor tells us that the stem cells do not cause  severe GI symptoms, fevers etc.  This is great news both because that is so awful and exhausting AND because it has not been happening.  We were beginning to wonder if we were missing out on some lousy but necessary part of the engraftment process.  Mucositis has begun in earnest; John's simile description of it is it's "like swallowing razor blades."  Still, he is able to swallow oral meds and some chocolate Boost.  We're thinking a morphine pump is in his near future - tonight or tomorrow.  Today's information is that mucositis is most likely the result of the total body radiation and the cumulative effect of his previous chemos, especially pralatrexate; not a result of the stem cells.

Today's complications are brought to you by the letters H and R.  John has some persistent hiccups (H) that can be successfully treated with baclofen or thorazine; saving the thorazine for bedtime because it also helps him sleep.  Sleep deprivation is unavoidable and we choose to see it as a necessary by-product of excellent and very frequent medical care and procedures. John is having some very realistic, colorful almost psychedelic dreams of disturbing natures especially since they seem so real (if bizarre) and like they are really happening.  Effect of meds?  lack of sleep? some combination??

"R" is for radiation burns; John has several on his hands.  Aquaphor gives temporary relief.  Funny how history repeats itself...  Seth and Rebecca recommended Aquaphor for my dad's dry skin last summer and John went to the drug store to pick it up for him.  John's doctors have said he will experience more of the radiation side effects like hair loss, burns and mucositis this week.  This seems like more deja vu.  John used to teach Hiroshima; the novel described radiation sickness and how it could kick in days and weeks after exposure;   Never expected to be living through the symptoms ourselves.

Everyone tells us all in all, things are going well.

Day 0

As Lynn and I tended to my father during the seven years after my mother’s death, I watched, as his life diminished into a “routine,” of pills, nebulizer and inhaler treatments, and PT with no hope of return to more than staying even.  In fact, for much of those seven years, dad’s life was to get up around 7:00 AM; dress with help of a wonderful nurse he hired; have his coffee and potato buns: do his medical routine; head down to lunch with “the girls”; come back to his apartment; do his medical routine/deskwork/doze; and await Lynn or me to make him some dinner.  We’d watch “Wheel” and “Cops” and I’d tuck him in, turn out the lights, and lock up.  As I watched, I remember thinking, “I would not do this; I would cash it in.”

As the days wear on here I often wonder, “Why I am doing this?  Why not cash it in?”  The thought did cross my mind.  Why fight, what in all probability will be a losing battle with quite possibly more pain and suffering?  I don’t know!  I guess I just can’t pull away from life’s table, yet.  Maybe it’s all the love and support I’ve enjoyed all my life and continue on to today. Maybe it’s just that life is a battle with mortality, and I am more than willing to be a temporary champion in that fight.

Anyway, I just want anyone who reads this to know how deeply, my family and I appreciate the well wishes from our parents, George & Marie, our brothers and sisters-in-law, our cousins and aunts and nephews and nieces,  our friends, our colleagues, my former students, classmates, and perfect strangers, and our biggest cheerleaders – our kids and their families.  Hope is easier to hold when so many are cheering this effort on.

(Aside:  If Geoffrey Chaucer were to write Canterbury Tales today, he might well use an urban hospital as the frame.  The diversity here is simply, as in Chaucer’s time:  the world.  Given that, it reminds me that the only real enemy anyone might fear is (as Elie Wiesel said in a commencement address at Boston University in 1992) fanaticism.  I would simply define that as an absolute belief that your god, your beliefs, you way of thinking is so fragile, it necessitates killing all who don’t hold the same.  The Pardoner of Canterbury Tales would have simply left it at avarice.  Actually, they both seem dead on.)  

Yesterday, was day zero.  Zacc and Mike’s stem cells went in.  Now go and engraft one of you!