1/22

All of John's blood counts are slightly improved; still not normal but moving in that direction.  His rash is very much under control; the prednisone and photopheresis treatments seem to be working.  One complication is low sodium and slightly elevated potassium.  The treatment (as predicted by our favorite ER doc) is eating salt tablets and adding extra salt to food.  If I could only give him a transfusion, his sodium count would be just fine as those of you who know me well know that salt is a food group for me.  That's not a possibility so we will depend on the flavored salts (thanks, Kenza!) and the crunchy salt (thanks, kids!) we got for Christmas.  John is supposed to avoid potassium rich foods like bananas, oranges, tomatoes and potatoes (that last not music to a Dutchman's ears...)

We had a very invigorating weekend with visits from my brother and sister - Harry and Terry - and good friends Danny, Carla and Sue.  Thanks all for the visit and Sue for the spicy black bean soup.  Many thanks also to Gloria and all of her specialty goodies.  We look forward to seeing visitors when the flu season subsides and as you have time.  John is really beginning to feel better and is doing more every day.  He should be up to walks in the spring.  In the meantime, be careful in the cold weather and the upcoming winter storm!

1/18/13

Today is Day 90 from John's stem cell transplant; it has officially been 3 months.  To celebrate, John had a bone marrow biopsy; not exactly a good time but a procedure that will yield important information about how much of John's immune system is left and how much of the donors' immune systems is engrafted.  It also offers a peek into the health of the cells.  John gets one every 3 months for the first year.

Another milestone - today marks one week that John has been home.  We are adjusting to our schedule of photopheresis treatments and home procedures; think we have it figured out now.  The hvgd rash has returned so the steroid dose will be increased a little; hopefully that and the photopheresis will knock the rash down before it gets a chance to really establish itself.  There is also a new med given bi-weekly that should help keep the cmv numbers below 100.  That first treatment will be next Thursday; right now we don't have results more current than the numbers at discharge which were 118.  The blood results have all improved - not to normal but better than they were; this is most likely a result of discontinuing the phoscarnate for treating the cmv.

Thank you to all of our helpers (medical, snack and meal providers, card writers, drivers, prayer-ers, and visitors); words don't adequately express our gratitude but they are all we have at the moment.  Thank you all.

1/10

It's official; John will be discharged Friday morning.  We just can't thank and praise the staff enough; they are sending him home like the 6 Million Dollar Man - rebuilt and better than ever.  Seriously, he is much stronger than he was when he came home after transplant.  There are still plenty of challenges ahead and we're told ups and downs are common during the first year post-transplant but things are already remarkably better than they were in October and we're looking forward to continued improvement in the next 9 months.

Thank you for all your ongoing support, prayers, love, and contacts.  We are looking forward to thanking you in person instead of via the blog if you have time to visit.  And, a special thank you to our nephew, Josh, who visited this week.  His timing was particularly good since he came on a day when John didn't have any other visitors and he came with Munchkins :)

1/8

John has been in the hospital a little over a month now with graft vs host disease and a cytomegalovirus infection.  Today his test results show that the CMV has dropped to 118 so he can be discharged later this week.  Still working out details about exactly when.

He will still need to be in Philadelphia 3 days/week for photopheresis for the gvhd and will need a med for the cmv, but this is great news and a really good start to 2013.

Time to get the burrow in order for his arrival.  Just let us know if you would like to visit.  The only precaution is that you have to be 100% healthy, no headache, cough, achy joints, infections, etc.  This is a bad flu season in PA this winter and as fine as the nurses, doctors and hospital staff are, we'd like to finish our recovery at home - no more complications and hospital readmissions.

1/4/13

Great news - the CMV numbers are in the 5,000's.  This is a huge drop and an important step in recovery.  The target is a number below 100 aka "undetectable".  There is a chance we will hit that marker soon; the estimate for the earliest possible discharge is late next week.  The numbers will be run again early next week so by mid-week we should have a better idea of whether we are really looking at the possibility of discharge soon.  Two of John's anti-viral meds (cytogam and gamcyclovir) have been discontinued but he is still receiving the phoscarnate twice a day as treatment against CMV.

Photopheresis has really been effective against the gvhd so the steroid dosage has also been decreased to a low maintainance level.  The decreased steroid dose has improved immune function so John's own new immune system can work against the CMV too.  Another in the long list of awful steroid side effects is diminished strength in the quads; PT is working on improving that.

We had a fantastic surprise last night; Kelly E - one of John's former students and a good family friend - stopped in for a visit.  Catching up on Kelly's news was a real treat.

This is all a really good beginning to 2013,

1/2/13

Some good news for the new year; John's rash is definitely improving and the steroid dosage has been decreased a bit.  The photopheresis really seems to be helping turn the bend on the gvhd.  The CMV numbers have also decreased quite a bit; we should have new numbers in a day or two and are really hoping to see the downward trend continue.  The CMV is mostly what is keeping John in the hospital now so if there is a consistent decline in the numbers, we will be able to begin thinking about a discharge date.  John has been in the hospital since 12/6 and we are both really looking forward to him being well enough to return home.

John's weight is fluctuating in the 180's and 190's now.  That is a lot of water from all of the IV meds and hydrations.  He has a lot of swelling but that will improve as he can come off some of the IV fluids.  In the meantime, lasix is one of his best friends.  Appetite is still great; Dunkin Donuts is right around the corner from the hospital and John is a very good patron.

Physical therapy is going well.  That and walks in the hallway will also help reduce some of the swelling from fluids.

The blood counts are still low and still treated with leukine and neupogen for the wbc, and transfusions for the hemoglobin and platelets.  The platelet count has been as low as 14,000 and is currently hovering around 20,000.  It's hard to clot with a count that low so John has to be very careful not to fall or get bumped by anyone or anything.

We had a wonderful Christmas celebration (belated) with our kids, grandkids, and grandkittens/dogs. Their visits to the hospital were really uplifting for John.  Zacc and Sharon have bad colds so they could only visit through the glass wall; they couldn't actually go on the floor.  Neither could the girls since you have to be at least 16 to go on the floor.  And, finally, the kittens and dogs could only visit in spirit but we have lots of pictures as evidence of their participation.  Thanks are in order to our nephews who prepared a lovely last minute New Year's Eve dinner.  We are looking forward to more celebrations in 2013 with John at the party venue instead of in the hospital this year.  Wishing all of you health and happiness and wealth and wisdom in 2013.