Day +9

Thanks to the morphine drip and maybe a little bit of the mucositis healing, Jeff is feeling much better than he was a few days ago. He's sitting up and talking (sometimes about some really crazy stuff), and is actually quite relieved to be in the hospital. Knowing how much he despises it here, I now realize just how bad he was feeling.

His blood counts are still bottomed out, but the Neupogen shots should have them climbing within a few days (hopefully). Because of the severity of his mouth sores, Jeff is unable to eat solid foods, so he is receiving IV nutrition (TPN) through his central line. I expect he will have to remain in the hospital for several more days.
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From "The Alchemist" by Paulo Coelho

"I'm alive," he said to the boy, as he ate a bunch of dates one night, with no fires and no moon. "When I'm eating, that's all I think about. If I'm on the march, I just concentrate on marching. If I have to fight, it will be just as good a day to die as any other.

"Because I don't live in either my past or my future. I'm interested only in the present. If you can concentrate always on the present, you'll be a happy man. You'll see that there is life in the desert, that there are stars in the heavens, and that tribesmen fight because they are part of the human race. Life will be a party for you, a grand festival, because life is the moment we're living right now."
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Day +6

Jeff was admitted to the hospital again today. He is in pretty bad shape right now with mucousitis, fungal and bladder infections, and an overall feeling of malaise. To help combat some of the pain, he is receiving morphine intravenously via a pump that he has partial control over. I expect that he'll also begin receiving IV nutrition sometime soon.

Please keep your positive energies flowing our way.
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Day +4

Jeff is going through a bit of a rough patch. Nothing too serious as of yet, but he is feeling downright awful. On Saturday, he'll start getting shots to help speed up the recovery of his white count. With any luck, his new German stem cells will start working sooner rather than later.
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Day +2

As long as nothing goes haywire before the paperwork gets completed, Jeff will be discharged today.  His headache is pretty controllable now, but he's got a bit of a sore throat.  Because the hospital has tightened up its visitation policy, and is not allowing kids anywhere near the patients (swine flu precautions), Jeff hasn't seen JD since last Tuesday morning.  I'm hoping the little man will be all Jeff needs to start feeling a little better.

Day +1

Jeff received his new cells yesterday without any problems. However, he had a pretty rough night due to a headache that required lots of morphine, so he won't be discharged today.
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Day -4

Jeff was admitted this morning, as scheduled.  He received fludarabine today, and will receive his final dose of pre-transplant chemotherapy tomorrow.  Thursday and Friday will be days "off," in that he will not be receiving any chemo.  He will, however, need to remain in the hospital for the rest of the week.  If he is fever-free on Day +1 (Sunday), he'll be discharged.  

Coming Undone

My current "hospital" book is a first novel by David Wroblewski called "The Story of Edgar Sawtelle.". Without getting into the plot, I'm going to quote a line from the book that I can't get out of my head.


"That the world could come permanently unsprung never occurred to him."


Two yeàrs ago when we first found out that there was something wrong with Jeff, that he had the dreaded C word, I remember thinking to myself that my world has now changed. My future, my unborn baby's future, and of course, Jeff's future was not going to be what I hoped. These thoughts eventually transitioned into an assumption that we would get past this, that trying times would pass and our world would soon be our own again. Never did I think, not consciously anyway, that I would need to be writing something like this two years later.


Obviously, that quote struck a chord with me because two years ago it did not occur to me that life could be so hard for so long. Do I think our lives have become permanently unsprung? No, I still do not believe that, but I do now know that one really bad thing happening to you does not somehow prevent the universe from crashing down on you again (and again).


So, right now, I need to remember that each day is a miracle, and my life will only come undone if I allow myself to accept that it has come undone. I'm stubborn, so I don't think I will be succumbing to that thought anytime soon.


**Jeff is receiving his Day -6 chemo as I write this. He just told me that he thinks Day Hospital has its sh*t together and he loves the heated blankets that Nurse Megan used to cover him up.
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Day -7

Jeff received fludarabine and cytoxan today as his first day of transplant conditioning. He tolerated both drugs fairly well, with just a little bit of nausea. He is scheduled to receive the first three days of chemo in Day Hospital. On Day -4, he'll be admitted to the inpatient wing of the cancer institute for the remainder of the protocol.

Jeff was thrilled to see JD today, and I'm glad the little man can still put a smile on his Daddy's face. As I've said before, this has been a long hard road, and it has taken its toll on everyone who is intimately involved in the situation. I am continuing my quest to live in the moment as much as possible, and have found that avoiding thoughts about what might happen is VERY liberating. Jeff has his good moments, but unfortunately, he is under such physical distress that the bad moments are currently out-weighing the good.
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Tomorrow

Tomorrow at 9 AM, Jeff will be starting chemotherapy for his mini MUD (matched unrelated donor) transplant.  Because this transplant is a "mini," the chemo is less harsh than what he has been receiving, and he is able to start things on an outpatient basis.  If you remember from the last time, the first day of transplant is called Day - 7 (minus seven).   Transplant Day, which is scheduled for the 21st, will be called Day 0.

Jeff is stable, but not feeling very well.  He has some retinal bleeding, a product of months worth of low platelets, so his vision is a little fuzzy.  The shingles are still very painful, and his energy level is very low.  The past five months have been hell on his body, and he is sick and tired of being sick and tired.

I suppose I'll eventually have more to say about the treatment of this disease and the havoc it wreaks on the patient and his family, but for now I think I'll curl up with a good book and read until I fall asleep.

**Jeff is not up for conversation, but I'm sure jokes and good stories sent via e-mail (jeff.eckert76@gmail.com) or text (512-2576) would be appreciated.

Aside from occasional shingles-related pain, Jeff is feeling okay. His pneumonia has mostly resolved itself and the nausea he was feeling for the better part of last week has finally passed. His appetite is also making a comeback, and with any luck, he'll gain back a few of the pounds he lost before chemo starts again on Saturday. He is finally making some white blood cells, but his platelets and red blood are taking their good old time. Considering all of the chemo Jeff has received over the past two years, it is not a surprise that his marrow is taking a little longer to bounce back.

Transplant Delayed & Discharged

Jeff was discharged last night, but the transplant has been delayed by a week.  His creatinine is trending downward (good news), but his shingles have been pretty painful.  He seems to think that the chest congestion caused by the pneumonia is also improving.

Jeff had fevers over the weekend, and is back in the hospital. He has a touch of pneumonia and shingles in some strange places. He is very tired, coughing quite a bit, and feeling pretty blah. His kidney functions are still elevated - that, along with the pneumonia make it unlikely that transplant chemo will start this week. At this stage in the game, it is also unlikely that anything will go completely as planned, so we'll just have to roll with it.

Goodbye Friend

Glenn Gleason's body lost its fight with AML yesterday. His spirit and strength will live on in his loving wife Amy and their beautiful children.

Rest in peace, Glenn.