FYI

Jeff still has an e-mail account (jeckert@windstream.net), but no internet access in the hospital. Once he's back at our apartment, he'll be checking it regularly.

Day 20

Not much has changed since Wednesday night. Jeff is still spiking fevers, mostly at night, and they still haven't found anything in particular that is causing them. This happens quite often to neutropenic (means no neutrophils to fight infection) patients, and may just be the body's way of reacting to such low blood counts.

In any case, they are covering for every type of infection that might be causing the temp, as he is on oral and IV antibiotics, anti-fungal, and anti-viral medications. He also swishes his mouth with saline several times a day to keep it clean, swishes with a numbing agent to fight the minor muscousitis that he has, and puts drops in his eyes to combat the drying caused by the chemo. Did I mention that he also has c-diff again? Luckily, his symptoms are much less severe than the last two times he had it (no horrible vomiting & diarrhea).

Despite all of this, Jeff's spirits are still pretty good. He still has his sense of humor and is handling the situation quite well.

Day 18 (I miscounted yesterday)

Jeff received the DLI today, and so he's smelling a bit like creamed corn. It's a bit nauseating to me, but it's not bothering him too much. Just like last time, the cells felt funny going in, but his body handled it without much fanfare. He is still feverish and last night the nurses had him on the cooling blanket for temps that were approaching 104 degrees. In light of the continued fevers, the infectious disease team was in to make sure that his regular doctors weren't missing something. After an examination, they followed up with a probe of his sinuses and CAT scan of his jaw. He's had a sore tooth and is convinced that it must be causing his fevers. I disagree, and don't think they'll find anything specific, which means that I don't think the problem is going to go away until his white blood count recovers. This could happen as early as Day 20, but as late as Day 28. Ugh.

Because of the way Jeff's marrow looked on Day 13, Dr. Claxton thinks that Jeff will recover his blood counts in remission. This is good news, but we really need to hope for some graph vs. host, so that the remission is sustainable.

The hospital is exhausting to me, as I am there most of the day and then come home to a baby that seems to be getting another tooth. I have been sustaining myself with cafe mochas, coffee and Pepsi, although I did manage to eat some spinach today.

Day 18

Jeff is still spiking fevers at night, which means he's still hospitalized. He had a bit of a reprieve last night and wasn't as uncomfortable as he has been, but he did have some other issues that kept him up all night. He will be getting the booster dose of Mark's cells tomorrow, which as a procedure is not a big deal, but is the key to keeping him in remission. We have to hope that the cells stimulate some graph vs. host disease, which is characterized by damage to the skin, liver and gut. Funny that we have to hope for this, but if Mark's cells are damaging other organs, they are probably also damaging leukemia cells.

JD is growing like a weed and is still the happy baby he's always been. Luckily, he doesn't seem to know what's going on and always has a smile on his face when we take him to the hospital to see his Daddy. The nurses are all in love with him, and he is the talk of the Hershey Cancer Institute. I can't blame them...I do have an adorable little boy!

Day 15

Jeff is still running a temperature. It usually comes on in the late evening and lasts until late morning. They started him on an anti-fungal last night in hopes that it will take care of the still-mysterious infection. He is quite uncomfortable most of the time.

They've also started Jeff on Neupogen shots which should help him to recover his white blood cells a little bit sooner. In addition, he'll be getting a booster dose of Mark's stem cells some time after the fever breaks. This treatment is called a Donor Lymphocyte Infusion, which is meant to stimulate GVHD and keep the leukemia at bay.

Remission!!

We just got word that Jeff's bone marrow looks clear, and he is in remission. More on what's next later.

Day 13

Jeff was feeling pretty badly today, and this morning his red blood count was less than half of normal. So, the nurses ordered up some red blood and Jeff started to feel a little better. Just as that was happening the doctor came in to shove a needle into his hip bone to collect blood and marrow for the biopsy. I think we'll know something (not everything) some time tonight.

In the mean time, Jeff's eye hemorrhaged again, but not as badly as last time. He is getting another bag of platelets right now so that it doesn't get any worse. He was still feverish this morning, so he'll be stuck in the hospital until at least Sunday.

Word of the Day

Jeff is still febrile, which means that he's feverish. Funny thing is that even though he's running a temp and his counts are at rock bottom, he still feels pretty good (physically). However, he hates being in the hospital and is extremely bored. Phone calls and funny text messages would probably be very welcome. To keep my Dad, The Minute Nazi happy, please call his room...(717) 531-7697. (Text messages are free for us.)

Because the docs don't know what's causing Jeff's temp, they're doing all sorts of tests. Besides culturing his blood, they CAT scanned his lungs today to make sure he doesn't have fungal pneumonia. He doesn't.

Other than than all of that mess, we're managing to get by without too much drama. JD's other tooth started to poke through, and he slept very well last night. I'm back to squeezing my workouts in, so that makes me pretty happy.

Hospital

Jeff is still running a temp, so he'll be in the hospital until at least Friday. He also had a pretty bad allergic to some platelets...he broke out in hives all over his body. They had to stop the platelets and give him a bunch of hydrocortisone and benadryl. He's doing fine now, but the whole experience was a little scary. They'll try giving him platelets again tomorrow - this time a little slower and with some extra steroid.

JD sprouted another tooth this week, and I'm hoping the opposite one comes in soon. Maybe then he will sleep a little better!

Fever

Jeff was admitted to the hospital last night with a fever. Generally, he feels okay, but that means the doctors don't know why he's running a temp. So, they'll culture his blood and see what starts growing...it's most likely an infection in his central line. In the mean time, they are pumping him with IV antibiotics. Tomorrow is probably the day that they'll biopsy his bone marrow to see if the chemo did it's job.

Day 8

Jeff is starting to feel the effects of the chemotherapy. He's getting weak, but he's still eating well, and for the most part, his spirits are high. But, the familiarity of this routine is getting to us.

JD knows that all is not well and is sleeping poorly, which is just adding to the stress for me. The lack of sleep and the worrying are wearing on my body and I could already use a break.

We did have an okay weekend. We had 7 visitors who brought good moods and conversation. We also have a new Wii to keep us entertained.

Day 5

Jeff finished up his chemo today and is still feeling okay. Over the next couple of days his blood counts will start to drop and he'll start to feel pretty crappy. Hopefully, he won't feel quite as badly as he did last year. He's been discharged from the hospital, but we'll be going back and forth to Day Hospital now so that Jeff can get red blood and platelets as he needs them.

We're all moved in to our new digs here in Hummelstown and it's nice to have our own place. JD is starting to become accustomed to his new surroundings, and he only woke up once last night (although it wasn't all that easy getting him back to sleep). I think he misses his crib and is wondering why the heck he has to sleep in a Pack n Play.

We're still taking things one day at time, hoping for the best and preparing for the worst.

Day 2

I was hoping to never use my blog for this purpose again, but I guess I don't have much of a choice, and as Henry Kissinger once said,

The absence of alternatives clears the mind marvelously.

Since we don't really have any alternatives, here we are. Jeff was admitted to Hershey Med Center yesterday afternoon and had his first round of chemo (through a peripheral IV) last night. He had his new central line "installed" this afternoon and is just finishing up round 2 now. This particular chemotherapy regimen, known as MEC, is the same as his second round from the first time. He'll have three more day's worth and if he doesn't get a fever, will be discharged from the hospital on Thursday. At that point, his blood counts will be dropping and we'll need to go to Day Hospital everyday for check-ups and blood transfusions.

Hopefully, the MEC wipes his bone marrow clean and sends him into a remission. On Day 14 they will do a biopsy, and if all looks well, they'll give Jeff a booster dose of Mark's stem cells in hopes of stimulating some graph vs. host disease, which has an anti-leukemic effect.

AML relapse after a stem cell transplant is not a good thing, but Dr. Claxton is hopeful that this round of treatments will work to keep Jeff healthy for a long time.

Our new address is:

7 West Main Street
Suite 301
Hummelstown, PA 17036

Relapse

Jeff went to Hershey yesterday for his regular check-up feeling fine, and to make a long story short, his blood did not look good and a bone marrow biopsy confirmed an AML relapse. He'll be admitted to the hospital Sunday to start the next round of treatments. I'll write more later.