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!

10/18

Today was a pretty good day; a little oasis of respite from T cell induced graft v host disease and chemotherapy.  John took a couple of walks up and down the hall, sat up in a chair, ate a little, worked on his computer, and showered.  He had fun with the staff teasing the North Carolinian nurse about country music and her southern accent by giving her his best "thank you; thank you very much" Elvis routine.  There were also some John Wayne "Pilgrim" impersonations which the attending nurse was too young to understand.  Before discharge, I am sure there will be some occasion to whip out Dr. Evil...

For those of you who are not familiar with John's treatment, John is receiving a half match (haplo) transplant because no unrelated donor match was ever found.  In a half match, one of your children or a parent can donate because they received (children) or passed along (parent) half of your chromosomes, making them an exact half match, including the ones containing the immune system genes (HLA).  If this trial has good results that lead to standard treatment, about 90% of people who need a BMT will be able to find a donor.  John is also in the first clinical trial in humans of a bone marrow transplant with stem cells and T cells from 2 adult donors.  It is called "2 step": donor T cell administration followed by chemo to kill the activated T cells is step 1.  Administration of stem cells is step 2.  It is thought that the gvh disease from the T cells may decrease the odds of relapse later and that a double donor might give two immune systems the chance to identify and destroy cancer cells.  One of the donated immune systems may in time eliminate the other donated immune system; or, they may both engraft and live somewhat peaceably with each other inside John.  In that case, one will probably be more dominant and be represented in greater numbers than the other.  Bone marrow biopsies down the road will determine how much of each them there are.   There are some encouraging results of the half match procedure; not a lot is known about the double donor with T cells since that procedure is in its first human clinical trial.  There is some symmetry in trying a treatment very little is known about against John's really uncommon hematodermic cancer that not a lot is known about either. 


At 6:00 tonight, Day 0 began with the administration of stem cells.  This will re-initiate the graft v host disease as well as some graft v graft reaction with the accompanying severe GI distress, fevers and mucositis.  The good news is the symptoms may be a little less severe than the initial gvh; the bad news is the symptoms will continue until the stem cells engraft - a process that can take weeks.  So, please continue to send good wishes, prayers, positive energy John's way; this is a war that he will get through but it will be debilitating while it is being waged.

Under the banner of learning something new every day, here are some medical facts that have come our way in the last 48 hours:
1) Hospitals can serve neutropenic patients fresh fruit and vegetables because the hospital dieticians and food service staff know they have been correctly prepared.  At home neutropenic diets are still pretty much boiled fare to minimize the chance of food borne infection in immunocompromised patients. 
2) T cells can live 50 years; unfortunately, the donated T cells do not confer immunity.  Once his immune system can tolerate it (1-2 years post discharge), John will be re-vaccinated for all of the childhood diseases .
3) Even after he is discharged, John can't be around babies who have been recently vaccinated.  The live vaccines can shed up to a month post-vaccination.  We are going to have to figure out a visitation schedule in between our grand daughters' vaccination schedules; we are desperate to see them.
4) Post discharge, John can spend time with healthy children and babies.  This befuddles us since they may be contagious before they are symptomatic; I am sure more medical tidbits will come our way to help us figure out when we can safely spend time with the girls.
5) You can tell the stem cells are engrafting when the white blood cell count begins to improve.  John's current wbc count is 0.0
6) Michael and Zacc each donated a full portion of stem cells so John will receive 2 times the normal dose.  Evidence so far indicates that double donor BMTs engraft a little faster than  single donor BMTs (maybe because the patient is getting twice as many cells??  a little like the Doublemint gum advertisements for those of you old enough to remember...)


We cannot thank you enough for the expressions of encouragement and assistance.  We truly could not do this without the help and support of our families and friends.

10/16/12

Yesterday and today John received cytoxan to eliminate Michael's and Zacchary's T cells.  It's necessary to remove the T cells at this point but one complication of this chemotherapy is that it can cause hemorrhagic cystitis so John is also receiving lots of IV fluids.  During this phase of the preparation for receiving stem cells, John is still suffering through fevers, dehydration and very severe GI distress.  He is on round-the-clock meds to counteract these symptoms as much as possible and receiving frequent blood tests to monitor whether the temperatures are elevated as a result of an infection.  If anything grows out of the blood cultures, the medical staff will know what the agent is and how to treat it.  It's difficult drawing blood for the cultures because chemo, radiation and dehydration all deteriorate veins.  John's current symptoms will now be ongoing until the stem cells engraft and begin manufacturing new blood cells; that time is several weeks off.  So, all of your good wishes, prayers and mental support are needed now more than ever.

Despite all of this, John is in Philadelphia listening to the second presidential debate.  If you're so inclined, there is something concrete you can do.  Please consider voting for President Obama - the only candidate of a major party with a health care plan that would help John and all of us when we get sick.

Sympathy for for the Devil (If He / She were Diabetic)

Mike and Zacc, reporting again.  We headed back to Neffs with Mom from Philly on Friday.  Before leaving, we picked up our Neupogen.  What's Neupogen you ask?  It's a drug that increases the production of stem cells in our bone marrow.  Eventually, they will spill out of our bones and into our bloodstream.  And, it's a drug that had us carrying monetarily the equivalent of a very nice car in a canvas bag on our bus trip back to Neffs.

Saturday morning was when we started injecting ourselves.  Zacc's style is all GQ: unzip his stylish sweater and just go for it.  Mine is to get in the recliner, take off the shirt, pinch my skin way too hard, and then try and build up the nerve to stick myself.  It's really not too bad.  And, now that I've had some practice, I can say we both barely feel a thing.

The main side effect is aching bones but we've been taking our Claritin and Tylenol and so far feel just fine.  But, I'm wondering about some enhanced strength issues.  Zacc and I were throwing a frisbee Saturday night.  Yes, it had a split in its center but the edges were still intact.  I went for my patented behind the back throw and tore the frisbee in half as one piece hit the ground and seconds later the other fluttered back to earth.

Anyway, by the time we return to TJH on Tuesday morning, our bloodstreams should be swimming with stem cells, some of which have a bright future as Dad's new immune system.

10/14/12

John received Zacchary's and Michael's (in that order) T cells on Friday night.  Once they were both in there, he said he felt like the living room where they used to rumble as kids.  John is having graft v host disease but that is expected and intended during this part of the treatment.  The T cells should destroy any remaining marrow and cancer cells.  Tomorrow (Monday) and Tuesday, chemotherapy will be administered to eliminate the T cells so that the graft v host reaction does not get out of control and since the T cells will have had their maximum beneficial effect by then.

During this phase John has pretty dramatic flu-like symptoms.  Those should begin to improve mid-week after the chemo on Monday and Tuesday.  In spite of feeling generally lousy, he is supposed to be up and walking as much as possible.  He is one of the very few patients we see on the bone marrow transplant unit who is able to follow this recommendation.  He continues to exceed expectations.

Michael and Zacchary will be donating stem cells all day Tuesday and Wednesday; John will receive them Thursday and then we wait for engraftment.  It has been great having M and Z here; they have really livened up visiting hours and have been fantastic chauffeurs back and forth to Phila.  We will miss them as they head back to their own busy lives; but, now we will always have a piece of them with us.  Or, at least one of them in case one of their immune systems eventually supplants the other one.  This is a fantastic science experiment in many ways; for instance, John's blood type may change to one of theirs.  Seth wasn't identified as one of John's donors for the double transplant but he has given us tremendous support especially in explaining some of the medical hocus pocus  I don't use the term medical hocus pocus lightly; even John's doctors and nurses say much about the process isn't well understood; they just have a track record of what seems to work and describe at least parts of it as "magic". 

From now on, we will post updates to our Google blog From the Honey Badger's Burrow.  Many thanks to our nephew and his partner who provided endless hours of entertainment with the Honey Badger You Tube Video after which John named the blog; and many thanks to our kids who discovered and sent honey badger paraphenalia for John's recent birthday providing some laughs in the bmt unit.  There are always laughs wherever John is; some things never change :)

Prayers, positive thoughts, good vibrations, email and blog posts are all very welcome.  Thank you for your continuing support.

Zacc and Mike's T Cell Harvest

Mike and Zacc reporting here.  Read below to find out what the hell is going on in this photo.

We went in to Thomas Jefferson Hospital to donate our white blood cells for Dad on Thursday, October 11th.  If they do their job, they'll beat up a bit on him but more on the cancer.

The first choice to make when you are about to do apheresis (harvesting of a certain part of the blood while returning the rest to where it came from: us) is which arm don't I want to bend for the next 8 hours.  You are hooked up to two needles.  The return is a normal needle but the out is a larger metal needle.  Once that needle is in, say goodbye to that elbow for awhile.

They got started just fine on Zacc and he was pumping blood in no time.  They gave me the foam blood drop and told me to squeeze.  I squeezed a bit too hard (needles have never been my thing) and it turned out they couldn't get any blood out of me because my veins were so contracted from the over exertion.  Third time and the bicep were the charm.  In went the bigger needle as a nurse held my hand and I tried not to treat her like the blood foam drop.

So, to keep the blood flowing to the centrifuge, the tubes are lined with anti-coagulant.  Good news is the blood keeps flowing; bad news is the anti-coagulant bonds to calcium in your body and that can make your extremities a bit tingly.  Zacc couldn't feel his nose for awhile.  And, my eye balls at times felt pressurized because we were getting lots of IV dripped in.  Our jaws cramped a bit as we ate Tums to counteract our calcium loss.  We also took straight calcium drips.

Zacc and I both went in with high hopes of doing work while donating.  Those quickly dissolved into watching Breaking Bad, reading, one-handed texting, and bullshitting with the nurses (a Ritter hospital tradition).  We each had our own nurse keeping an eye on our collection bag and tweaking the speed of the centrifuge accordingly.  Our entire blood volume would cycle through the machine roughly 5 times that day.  As the number of leukocytes in us lessened throughout the day, they had to spin faster to get them.  But, you also don't want too much of the other blood components getting in so it was a bit like Goldi Locks and the Three Bears all day setting just the right speed.  I thought the collection bags looked like 1-2-3 Jello with our plasma on top, leukocytes in the middle and typical looking blood on the bottom.  Zacc thought that was gross.

I wrapped up in 8 hours and Zacc in a bit less.  We both had enough leukocytes to give that we didn't have to donate again the next day.  It sucks having to go to the bathroom not in a bathroom and with one hand but  I had to manage with a drawn curtain.  Zacc, the human camel, managed not to go all day... something the nurses said they had only seen one other time.

Our leukocytes were let loose inside Dad on Friday night around 6PM.  Despite everything he's been through, Dad said he was a bit weirded out by the thought of our cells in him.   Zacc went first to get a head start on hide and seek and me second.  Dad has felt the effects all weekend and says he now has a bond with our childhood living room where we rough housed all day.  We're sure they're being much, much harder on Dad's cancer cells.

10/11/12

John is doing better than the average bear (who is surprised??) with his prep; he has completed 8 of 10 total body irradiations and is still eating and walking although he is beginning to feel a little under the weather at this point.  He is a rosy tan; not too badly burned and none of the old lesions have necrosed creating new sites for infection. 

Michael and Zacchary were donating all day today and will donate again all day tomorrow.  John will get two more radiation sessions tomorrow and then he will receive M and Z's T cells to finish off his immune system and stray cancer cells.  This will all take place tomorrow evening.  The T cells may cause flu like symptoms including GI distress and fever over the weekend but we will hope he continues to beat the odds.  I will keep you updated.

Thank you all again for your continued love, support and good wishes.  John does check his hotmail account so feel free to email him if you want to.

10/9/12

Just a quick update on our first day here.  After signing the consents, we were admitted yesterday morning.  To get onto or off the floor, everyone has to go through a series of air locks, scrubbing gowning, gloving and masking.  This is repeated every time visitors enter or leave John's room and/or the floor.  John is in 1402 Pavillion which is accessed by entering through the Gibbon Building, taking the elevator to the 9th floor, then the bridge to the Foederrer Pavilion Building, then the elevator to the 14th floor.  You have to use the push plates to open the doors (no handles or pushbars) and wait for the yellow light that indicates the air lock is in use goes off.  And, in John's room, only he can use the bathroom.  This is mostly a primer for Michael and Zacchary if they stop by while donating.  Everyone else should send their positive thoughts and prayers; it seems unlikely he will be up for much visitation.  As in all other regards, he may end up surprising us and doing better than the norm.  For anyone who does come, it will be a good idea to check with the floor nurse to make sure you have completed all the safety precautions the first time through.  Staff is very helpful and friendly.  Visiting hours are not restricted.  All of that said, I still encourage you to visit by email or cell phone instead of in person.  Staff and doctors have reiterated that the more challenging time for family is post discharge when he may need some help and lots of restrictions are still in place.  I'll update you regularly so you know how he is doing and when help might be most needed.

John is having his first radiation treatment right now and this will be the beginning of a nightmarish two weeks; surviving the prep and treatment during the next 12 days is our immediate goal.  Once again, we are hoping he will endure this with much fewer effects than the norm as he did in all his previous chemos.  There really isn't much more to say except thank you for all your support and love.