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!