2/28

Everyone please say extra prayers for John tonight.  He has been transferred to ICU after spiking a fever and suffering several episodes of very rapid heartbeat last night, this morning and this afternoon.  He is intubated and ventilated and that has already helped him resolve the rapid heartbeat on his own.  He is scheduled for a bronchoscopy tomorrow morning and is getting an arterial line tonight.  Those two procedures will provide information that will help the doctors target the most effective treatments.  His medical team now consists of his bone marrow transplant team, an infectious disease team, and a pulmonogy team and the best nurses ever.  They are all reasonably optimistic this is an acute episode that can be resolved relatively quickly.  Prayers and good thoughts please.

2/26

It has been a non-stop day of IV meds, oral meds and treatments.  At the end of this very long, tiring day and 4 hours of photopheresis, we found out the photopheresis treatment didn't work because the UV light bulb wasn't working.  Really.  So, after 4 hours of pumping out blood and treating it with uvedex (sp?), the blood was pumped back in.  Since there was no UV light, the uvedex didn't bond to the DNA in the T-cells and so didn't do any good.  If we have to look for a bright side in this mess, it is that John's wbc count is so low (0.7) that there may not have been many T-cells to treat anyway.

The infectious disease docs were here.  The pneumonia is consolidated, not diffuse; it could be caused by bacteria, viruses (including the CMV although that kind of pneumonia usually is diffuse), fungus or even aspiration of some food or fluid.  To figure out the culprit, he is consulting with John's transplant doc and the pulmonologists to see if bronchoscopy is a good idea.  If everyone gives the ok, that will be one more procedure - still looking for silver linings... at least John would get conscious sedation.  Too bad they can't do April's bone marrow biopsy while he is under.

John is still very tired, and weak, not eating much yet and has crummy counts - wbc 0.7, hemoglobin 9.1 and platelets 17,000.  He has 2 crowns that have come loose and was planning to see the dentist to remedy that on Monday; that was before he was admitted to the hospital on Friday.  Still making jokes with the staff though.  Today during an examination, an infectious disease fellow asked him if he knew where he was.  John answered yep, I'm in Hawaii, it's 1984, Reagan is president; the poor guy was getting worried but the light did eventually dawn.

Wood Cutting

Mike here.  A year ago we learned Dad's leukemia had come out of remission, and I headed down for a Neffs visit.  It's been an eventful last year.  The search for donor continued and proved fruitless.  But, Zacc and I were thrilled to be able to donate to Dad thanks to how far the bone marrow transplant techniques had come allowing two half matches to donate.  Relatively, Dad flew through the transplant and now seems to be dealing with most every possible complication.  It's a good time to take stock and think about how much has been accomplished this last year through courage, grit and love.  Mom and Dad continue to face leukemia as one.

So what's with this video?  Last February, Dad and I moved some cut wood from the edge of the hedgerow around the house and to the wood pile near the basketball hoop.

Cutting, hauling and burning wood has always been big for us.  Mom can never be warm enough.  I remember her wearing wool sweaters to August soccer tournaments.  She has nightgowns with small holes burned into them where she practically sat on a stove as the chimney needle headed for the red zone.  So a good part of our childhood was spent keeping the Neffs wood pile at the ready.

We'd go up to the Poconos for a weekend with an empty truck, and spend Saturday walking around as Dad picked dead trees to take down.  He'd plan how he wanted it to come down and begin work with the chainsaw.  As we got older, we enjoyed spending this time together and proving our new found teenage strength hauling the wood out Dad had just taken down.  Seth being Seth couldn't wait to work the chainsaw himself and got around to it in his later teens.  Zacc and I weren't as interested or as I like to think weren't as dispensable.  But, I do remember one day as Seth and Dad had a meeting of the minds over which way to take a tree down, I decided to look at the sky.  Still, I can lose myself in pretty deep daydreams doing this especially if I get to "twitch" my hands... long story.  All of a sudden the tree came down a few feet from me and I snapped out of it, my eyes went down the length of the tree to Seth and Dad and base laughing.  It really was all good fun.

Now, all I hope for this summer is some more time cutting wood with my brothers and Dad.  We get done and head back to the cabin were Mom's got a nice big dinner ready and now our wives, children, and girlfriends are waiting as well.  There's plenty of beer and bourbon to go around as we finish our meal.  And then we go out on the lake deck with some more beer and bourbon to watch the stars, tell stories we all already know and listen to Johnny Cash, Loudon Wainwright III, Warren Zevon, Steve Earle, Townes Van Zandt, cousin Josh, and Kris Kristofferson among others.

Dad, we look forward to having you back on your feet, cleaning your chainsaw, and cracking jokes as we do all the heavy lifting.  We know this last year has been tough, and I just keep thinking of Townes Van Zandt singing "To live is to fly, both low and high."  We love you.

2/23

John has been running temps between 102 - 104.  So far he has been diagnosed with at least one kind of pneumonia and his doctors are going to keep looking for more with a CAT scan.  He'll also be checked out for C-diff.

Not much of an appetite and he couldn't hold down the few bites of fresh fruit at breakfast even though he isn't suffering from nausea.  For now he is living on water, ice, and sodas which isn't helping out in the weight department.

An interesting fact we learned from his doctor this morning is that fevers also mess with blood sugars and that low sugars are more of a concern than high-ish sugars.  For now, his evening lantus is discontinued.  The cidofovir for CMV may be suppressing his blood counts; it will be replaced with phoscarnate which he had the last time he was in the hospital.  And, he will get some neupogen to build up the white blood cell count for good measure.  His current antibiotics are vancomycin and ceftazidime.

We'd love to be wrong but it seems like we might be here for a while.  We are on the third floor, an oncology floor, since the BMT unit is currently full.  Wishing everyone there the best outcomes as we keep working toward ours.

2/22/13

what a difference a day makes - ok, it was only a night, a very short night.  We got home about 9:30 last night after almost 12 continuous hours of treatment for John.  We packed up for a little weekend get-a-way to visit with the Pittsburgh family and to see off our eldest son who will be doing a month of residency in Hawaii; Rebecca and Annabel will be able to join him for a couple of weeks.

This morning we headed back to Phila for John's last photopheresis treatment this week.  One of the reasons he had to receive blood yesterday was that his hematocrit was too low for good functioning of the pheresis machine (I'm sure there's a technical term... pheresis-er??)  John's temp was 101.9 which may be a reaction to all of the blood products he received yesterday; or, it may be an infection.  So, photopheresis was abruptly discontinued and John is in the clinic now receiving two IV antibiotics.  When that is done, we have to walk across the street so he can be admitted to the hospital until the temperature comes down.

John has a picc line which is a potential source of infection.  I'm sure that will be checked out.  He also has a cap that came loose yesterday - another possible cause of the infection?  He had an appointment scheduled with his dentist for Monday but it is unlikely he will be home by then.  Still, maybe there is a chance... his temp here in the clinic is 99.4; maybe they just had a bum thermometer upstairs.  We'll keep you updated.

2/21

John had a big milestone this week.  2/18 was his 4 month anniversary for the bone marrow transplant.  As predicted, he is feeling a whole lot better now than he was then.

Some recent complications include dropping blood and platelet counts, dropping electrolytes, rising CMV counts and wild swings in the blood sugar readings.  We're having a long day today - photopheresis in the morning followed by magnesium, hydration, cydofovir, platelet and rbc infusions.  The increased CMV has resulted in extra cydofovir treatments as well as infusions of cytogam (IVIG) every other day.  Looks like that will be the norm for now.  Trying to level out the blood sugar is a crazy experiment of dosages and meds; right now John is on 3 diabetes meds and varying schedules of how much to take.  They have ranged from 64 this morning to a high of over 500 a couple of weeks ago; we obviously still have some work to do to get better at this.  We do our best to minimize swings with diet but since this diabetes is steroid induced, not diet induced, diet isn't a very effective way to control the sugar.  Still, we do what we can until the steroids can be reduced some more.  That's not going to happen very quickly because steroids help keep the gvhd controlled.

The upside is that John's skin is remarkably clear; the most recent form of gvhd to be vigilant about is gvhd of the gut.  Hopefully, that is an experience we can avoid.

John's medical team was at a bone marrow transplant conference last week.  They were excited to report that Jefferson's protocol using 2 steps and double donors for half matches has significantly better results for patients than the other protocols out there for half matches.  This is great news!

Finally, we had another event to celebrate this week; Michael (one of our donors) and Meredith celebrated their second wedding anniversary :)

2/14

Happy Valentine's Day, everyone.  We got some "special" surprises today.

John's morning blood sugar was 98; he didn't need any insulin.  What a great start to the day!  Photophoresis went smoothly and his skin still looks great with the reduced steroid level.

Today's blood tests included one for tacrolimus.  We didn't know that was ordered so we hadn't held the morning dosage.  This isn't much of a problem; the test can be drawn again tomorrow and this time we will hold the morning dose.  The results have been too high lately and the dosage was reduced a bit several days ago; hopefully tomorrow's test results will be in the right range.

One effect of tacro is diminishing magnesium levels.  John's Mg has been slowly getting less and less; Tuesday he needed a Mg infusion.  We were looking forward to getting home right after photophoresis today since that problem had been dealt with.  You can see where this conversation is going....  The Mg level is still too low and John is having another Mg infusion right now this afternoon.  It takes 2 hours.

We also learned there will be a new treatment for his CMV which has been trending upwards.  He'll receive cytogam (IVIg) 3 times this week beginning tomorrow.  This is an infusion of immunoglobulins that takes approximately 4 hours.  So, we will begin that tomorrow, Friday, and continue it Sunday and Tuesday.  Sigh.

Finally, the cidofovir used to treat the CMV is being increased to once a week instead of once every 2 weeks for at least this week and next week.  We're going to have to start using poster boards instead of a page of paper to chart all of his meds, appointments and treatments.  But, the good news continues to be more forward motion and improvement than falling backwards.  Say a prayer that the prophylactic CMV measures have the desired effect and start to knock those levels down.  BTW, John's nurse today said he was a "special case"; we all knew that already :)

2/12

One step forward, two steps sideways... John has been doing much better since his fall 10 days ago.  The bruises have healed and he has managed to stay upright since then.  And, I have managed not to run into any more of our friends' cars.

Photopheresis is helping the gvhd so we are able to reduce the steroids a little bit more starting tonight.  Cross your fingers that the new lower dose will continue to be effective.  The steroids continue to have lots of nasty side effects including muscle wasting and weakness (hence, the fall) and high blood sugar among others.  We're trying to do what we can through diet to help reduce the blood sugars but since the problem is caused by the steroids and not by diet, limiting carbohydrates doesn't make a dramatic difference.  John is on oral insulin twice a day, a short acting insulin injection three times a day, and a long acting insulin injection at night.  The sugar is still high but we're hopeful the steroid reduction and introduction of the night time insulin will help - a lot.

John's hair has started to regrow; he won't be ready for a haircut with Tammy for a while but this is still a good sign.  Our doctor said often transplant patients begin to regrow their hair at about 3 months and also begin to feel better at the same time.  Those milestones are happening right on schedule.  We're looking forward to continuing progress.

John and Barry did not get home until almost 11 pm on Friday after leaving at 6 am that morning.  After John fell, he and Barry went back to the clinic because the bleeding wouldn't stop.  He was admitted to the ER via the Philadelphia firefighters/EMT's who arrived at the clinic with a gurney.  After getting strapped to the gurney and carried to the ambulance, he answered questions for 45 minutes and then was driven (around the block) to the ambulance entry of the ER.  What makes this really crazy is that the ER is literally across the street from the clinic.  He could have walked there or gone in a wheelchair in a couple of minutes; maybe there is a special protocol for head injuries...

At the ER, it took 2 hours to be seen/admitted.  Then he waited another 2 hours to meet with a very thorough first year psychiatry resident on his ER rotation.  So, for 4 hours, he sat in the ER waiting room without a mask... during flu season...  Anyway, after a very detailed history, the dr. called me for John's current meds (??) and ordered a cat scan.  John had 2 cat scans that night; he was told it is protocol to do one every 6 hours to make sure there wasn't a bleeder.  Needless to say, he refused the third cat scan and the hand/wrist x-ray.

A great ER nurse brought him some dinner about 6 pm; he and Barry hadn't eaten since 5 am.  This is an extremely condensed version of the rest of the day Friday.  They did a good job because the abrasion and laceration are healing without any signs of infection ( or maybe that is Zacc's and Michael's immune system donations at work :) but it was entirely too much drama for a tumble.

We stayed at home for the rest of the weekend...

2/1

Today marks 3 weeks that John has been home; there have been a lot of developments.  His hair is regrowing; he is shaving again; he started getting pretty pink again after about a week at home so the steroids were increased from 8 to 32 mg; his legs are very weak, particularly the quads, from proximal muscle wasting caused by the steroids so he walked with a cane briefly but he has been able to hang it up for the last couple of weeks; he has high blood sugar also caused by the steroids; he is eating like crazy (steroids also contribute to that but so does all the weight he lost in the hospital - he is still down 50 pounds); he is driving more and is taking fewer naps and feeling more alert.

Our at home infusion nurse changes his picc line dressing once a week; we flush the picc line every day.  Photopheresis in Phila is still 3x/week and that is likely to continue for the foreseeable future.  We see someone from his medical team every time we are in Phila to check his meds, rash, and general well being.

We had a wonderful visit with Michael from Friday to Wednesday.  He helped with driving, with a video inventory John has been wanting to begin, with hunting potential vacation spots, with a video project for me at work, and jobs around the house too numerous to mention.  It was wonderful to have him home; many thanks to Meredith for sharing him with us.

John isn't neutropenic (and platelet and hemoglobin counts are holding steady or slightly improving) so we've been able to eat more diversely but we are still avoiding any fresh fruits and vegies we haven't washed ourselves, anything sitting out under lamps, and lunchmeats.  Our good friend Barb gave us a crash course in counting carbs to help us understand diet's effect on high blood sugar.  She ended our course with the admonition that since his high blood sugar is steroid induced, diet probably isn't going to have much effect.  Leave it to the nutritionist to be right; John's PA has the same opionion and the sugar readings of this week bear out their suspicions.  Until the steroids can be reduced, John is on both long lasting and short acting insulin.  Yesterday we received another crash course in blood sugar monitoring and insulin injection.  He is a champion injector already but we were both a little confused about using the monitor this morning.  Which brings us to today...

Which is a terrible, very bad day.  It started off great with the arrival of our good friend Barry K who volunteered to go with John to his photopheresis appointment in Phila today.  I left for work in the dark right after John and Barry left for Phila and backed up into Barry's van.  It was dark and I couldn't see very well but there is minimally a very substantial dent.  Barry was gracious when I told him I wrecked his car and he and John finished up in Phila in record time.  But, then I got a phone call telling me they would be delayed because John (weak legs) had fallen crossing the street, cutting his head and hand and scratching his glasses.  He has been in the ER getting the bleeding stopped, getting a CAT scan, and waiting for a doctor to read it before he can come home.  By the time they get here, it will probably already be dark again and Barry might not be able to see his damaged car until morning.  And, we still have to do the blood sugar monitoring again - hopefully we'll be more skilled this time and will have a better ending to a pretty crappy day.  On the bright side, no one was in the car when I hit it and there were no cars in the street when John fell so maybe the day wasn't nearly as bad as it could have been.

After reading this, if you still feel safe visiting us and if you are healthy, we would love to see you.