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.