Grief

In reality, I have been grieving for the loss of our life, for over two years. Jeff and I were VERY happy when he was first diagnosed. We were in love with each other, had jobs we liked, a baby on the way, a house we were busy remodeling, and the list goes on....we were happy and WE KNEW we were happy. We were not two people who were too busy with life to recognize that we had it good.

So, when we found out that Jeff had AML, devastation settled itself upon our (apparently) too nice life. As we navigated through surgeries, chemotherapy and transplant number one, we succumbed to the fact that our life had definitely changed, but held out hope for a better future. For me, most of that hope died out in February after Jeff's first relapse. I am well-versed on AML, its treatments, its causes (or lack thereof), and of course, its sobering statistics. A relapse after a transplant is BAD. There is no other word for it. Very, very few people survive for very long after the relapse. A second relapse, of course, portends an even more bleak future for its victims.

If I look back on things now, I grieved for the loss of our life, as we knew it, after the first transplant, and I began grieving for Jeff back in February after the first relapse. Any hope that I did have was transferred to Jeff in any way I could manage. I didn't outwardly grieve him while he was here, but on the inside, I was preparing myself. I needed to do that so that I could manage the months of treatments and be able to take care of JD. Maybe that sounds confusing, but I'm not somebody who lives with my head buried in the sand - I needed to face what was probably coming.

I've now lost two people who were absolutely shining lights in my life. One of them left me suddenly, and the other over the course of two years. I can't say that one way is better than the other, but I can say that in a lot of ways, a sudden loss is easier. The grief is more intense, but the anxiety leading up to a sudden death is non-existent, and anxiety about death is a cruel, cruel punishment, especially for a 30-year old.

Where am I now? Good question. We're only two weeks out, and I'm okay. Not good yet, and maybe I'm still in a little bit of shock - shock that I'll never hear Jeff's voice again, never hear him strum his guitar, or never see him kiss JD again. BUT, I'm also relieved that leukemia doesn't have to be a regular part of my day, that JD doesn't have to live in Hershey and at home, that Jeff is no longer struggling with his own mortality, and that he is no longer in pain. I've loved Jeff since I was 16 years old, and I AM relieved that I don't have to watch him suffer anymore. Really relieved.

Rest in peace, my beautiful, beautiful man.

Jump!

Merry Christmas

JD and I are doing well....as well as we can.  Actually, JD is doing beautifully, as he is too young to realize the magnitude of what has happened.  He'll continue to be my shining light, and I'll be okay, because he is way better than okay.  I suppose eventually I'll want to write about grief, but right now, I'm going to concentrate on enjoying my little man's second Christmas. 

Thank you, thank you, thank you a hundred times for the continued support.  I will eventually get to the two year's worth of Thank You notes, but it's going to take me a while - I hope nobody takes offense to that.  Please just know that I am very appreciative of everything (little or big) that was done to help my family over the course of Jeff's illness.

Please - enjoy the holidays with your family.  I know I will.

Jeff

Jeff Eckert made me a better person.  He was kind, funny, and knew how to do all of things that I didn't.  He loved to laugh, and when he did, so did everybody else.  Jeff wanted to get the most out of his life, and for him, that meant having as much fun as he could.  He made beautiful music, and entertained in a naturally modest way that stole my heart from the very beginning. 

The joy that the both of us felt when JD was born was powerful, and I think, quite unexpected for Jeff.  He had no idea what becoming a Dad would do to him.  While the past two years were incredibly difficult, I can not describe them any way, but as the best two years of Jeff's and my life together.  After many years of loving just each other, we were able to channel our love together into our little boy, who amazingly, seems to have inherited the best of both of us.  While it is a rotten, rotten shame that JD will not get to grow up knowing his father personally, I am sure that I, and others who were close to Jeff, carry his energy with us.  And, I've no doubt that JD will feel that energy not only from within himself, but from the people who surround and love him.

I'd forgotten what it feels like to grieve for someone that you love so much.  We lost Mom very suddenly, and I'm now remembering how intense the feelings are, how your body aches all over, and how your heart feels like it might explode from your chest.  It's paralyzing, and the truth and finality of it all has you staring at your remaining family in disbelief.  Can this really have happened?  Leukemia? Relapses? Stem cell transplants (plural)??  WTF???  Over and over again in my mind.

The healing road is a long one, with many hills to climb.  I know that we'll all have bad days, but somewhere along the way, we'll start to have good times again, and eventually, the good days will outweigh the bad.  Laughter will come, love will come even more easily than before, and we'll all hold on to each other a little tighter as we remember the real lesson -- life is about the moments we share with each other, and those moments can only happen right now.

Obituary from St. Marys Daily Press

Jeff D. Eckert, 30, of 1849 Bendigo Road, Johnsonburg, and formerly of St. Marys, died Sunday afternoon, Dec. 13, 2009 at Hershey Medical Center following lengthy illness.

He was born June 20, 1979 in St. Marys, a son of Kenneth and Marilyn Wehler Eckert of St. Marys.

On January 3, 2004 in St. Boniface Church in Kersey, he married Jamie Wilson Eckert, who survives.

He graduated from SMAHS, class of 1997. He received an Associate's Degree in automated manufacturing and tool making from PA College of Technology and had been employed by GE Sensing for the past 9 years. He loved to play his guitar and was the lead guitarist for the local band "6 Pak". He enjoyed hunting, fishing and bow fishing, but most of all, he enjoyed being a father.  He loved spending time with his family and loved to be around people.

Besides his parents and wife, he is survived by his beloved son, Jeff David "JD" Eckert, Jr., at home; by two brothers, Mark Eckert and his wife, Nicky of St. Marys, and Chad Eckert and his wife, Kim of St. Marys; a sister Jill, Mrs. Thaddeus Stager of Hershey; his paternal grandmother, Margaret Eckert of St. Marys, his maternal grandmother, Miriam Wehler of St. Marys, and by numerous aunts, uncles, nieces and nephews.

He was preceded in death by his paternal grandfather, James Eckert who preceded him in death March 16, 1993 and his maternal grandfather, William "Willie" Wehler, who preceded him in death January 7, 2009.

A Mass of Christian Burial for Jeff Eckert will be celebrated at the Queen of the World Church, 134 Queens Road, St. Marys, on Thursday, at 12 noon with Rev. Michael Ferrick, Pastor and Rev. Eric Vogt, O.S.B., concelebrants. 

Burial will follow in the St. Mary’s Catholic Cemetery.

Visitation will be at the Lynch-Green Funeral Home, N. Michael Street, St. Marys, on Wednesday from 2 to 4 and 7 to 9 p.m.

Memorial Contributions may be made to Be The Match Foundation, 3001 Broadway Street N.E., Suite 100, Minneapolis, MN 55413.

Arrangements

Wednesday, December 16, 2009
Lynch-Green Funeral Home
Saint Marys, PA
2 - 4, 7 - 9

Thursday, December 17, 2009
Queen of the World Church
St. Marys, PA
12 Noon

Jeff Eckert 6/20/1979 - 12/13/2009

This afternoon, Jeff made the transition to wherever it is beautiful people go when they die.

Arrangements forthcoming.

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Day +21

Jeff will be getting a dialysis treatment today because his kidneys are not clearing the toxins from his body, even though he is still peeing. His lungs are still about the same, as is his oxygen level on the vent. He is, however, requiring more medicine to maintain his blood pressure. We continue to wait for the anti-fungals to do their jobs, and should know one way or the other within a few days.
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Day +20

At this point, I'm not sure that days post transplant is an appropriate title to my post, but it keeps me from having to think too much. Jeff's status today is a little worse than yesterday. His kidneys are failing, and it's likely that dialysis will be started sometime soon. The settings on the vent needed to be bumped up again today to ensure that his blood is getting enough oxygen, and he is still relying on meds to keep his pressure up.


For the most part, Jeff seems to be relatively comfortable. He shows an occasional sign of irritation, but that usually only happens when someone is fiddling with him. I am also sure that on some level of consciousness he knows that we are here and is listening to what we are saying.


In case you haven't guessed, the situation here is pretty dire, but there is still some hope that the meds and Jeff's new immune system will be able to fight off the infection. In the mean time, we are taking things minute by minute.
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Day +19

Not too much new to report today. Jeff's kidneys are a little worse for the wear, but he is holding steady with his settings on the vent. There is no improvement in his lungs, but they aren't really any worse.

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Day +18 continued

Jeff is relying more heavily on the ventilator today. His kidneys are a little worse, but he is still producing some urine. He is still getting medicine to help elevate his blood pressure. The infectious disease docs are evaluating him to make sure that he shouldn't be getting any additional antibiotics, and the surgeons have determined that it is not feasible at this time to remove all or a portion of the most infected lung.

His nurse has told us that his condition is considered critical, but that at this point it's a stable-critical.
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Day + 18

Jeff is no better or worse than he was yesterday. The bronchoscopy that was performed yesterday (to clean out his airways and get biopsies) caused some of the infection in his lungs to spread to his bloodstream, making him more septic. This caused his blood pressure to drop a bit, so they started some new medicines and increased the oxygen on the vent.

The nurses caring for Jeff tell me that he is still strong, and is quite feisty when they are moving him around. I'm taking this as a very good sign that he still wants to fight through the hell.

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Day + 18

Jeff is no better or worse than he was yesterday. The bronchoscopy that was performed yesterday (to clean out his airways and get biopsies) caused some of the infection in his lungs to spread to his bloodstream, making him more septic. This caused his blood pressure to drop a bit, so they started some new medicines and increased the oxygen on the vent.

The nurses caring for Jeff tell me that he is still strong, and is quite feisty when they are moving him around. I'm taking this as a very good sign that he still wants to fight through the hell.

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Day +17 Continued

I just spoke with ICU attending physician. Jeff's liver enzymes are trending downward (that's good), and his kidneys are still producing urine. The pneumonia is concentrated in a portion of one lung. All of this means that as long nothing else comes up, the doctor is hopeful that in 2 or 3 days they will be able to start weaning him from the ventilator.

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Day +17

Jeff is stable, and his body is getting the break it needed.  Now, I guess we wait for him to improve.  I'll try to post regularly, or at least whenever there's something to write about.

Day +16 (I think, but I've been up all night)

Jeff was intubated this morning and is now on a breathing machine in the ICU. His pneumonia is a bit worse, and his kidneys and liver are contributing to some toxicity in his blood, which all combined to make breathing very difficult for him this morning, despite the oxygen mask. In addition, he has fluid buildup around his lungs (pulmonary edema). He is fully sedated, and finally getting some rest from the hallucinations, tremors and rigors.

The ICU team will be doing a full work-up to determine the best plan of action. Please keep Jeff in your thoughts and stop to enjoy the good moments in your day.
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GIVE BLOOD, Play In The Mud!

No no this is not Dr. Suess, I am Danielle (not Sam), guest author. For those of you who aren't familiar, I am Jamie's cousin or, as she referred to me in an earlier post, "thorn in her side."

The purpose of my post is to inform everyone about local blood drives. Giving blood is a great way to help Jeff, and many others. Jeff once said that he likes getting blood as much as he likes drinking beer. Give Jeff a beer...

- Dec. 9th, 2009
Moose Club, St. Marys
10 am - 4 pm

-Jan. 12, 2010
Kersey Senior Center
1:30 - 6:30 pm

-Jan. 13, 2010
Moose Club, St. Marys
10 am - 4 pm

If your not from our area, www.givelife.org is an excellent website to find blood drives in any location.

As for playing in the mud...Carpe diem!

Day +15

Fungal pneumonia is a nasty beast.  Jeff is still hallucinating, and pretty confused.  His body is shaking, and because of the hallucinations, he hasn't really slept in days.  After I put JD to bed last night, I gave Marilyn a break from sleeping at the hospital and stayed in Jeff's room with him.  The night was pretty hectic, with nurses in and out several times an hour.  The alarm was set on Jeff's bed so that every time he got up, someone came in to see what he was doing.  Early this morning, he was having trouble getting enough oxygen, so the nurses called the "Quick Response" team, and within a few minutes, there was a room full of doctors and  nurses from the ICU.  Although they parked the crash cart in front of his door, he was NOT close to needing it.  Still, I'm not too keen on seeing those paddles so close his room. 

The nurses caring through Jeff through this ordeal have been fantastic.  I'm so thankful for the sweet way they treat him.  It's very obvious that they care what happens to their patients.  Although, I'm fairly sure that Jeff won't remember much of this hospital stay, I won't be forgetting it anytime soon.

Day +14

I'd like to be able to paint a pretty picture of what's going on right now, but it ain't pretty.  Jeff has a fungal pneumonia, is on oxygen, and is receiving breathing treatments regularly.  He is not running a temperature, but his blood pressure is on the low side, and he is retaining fluids.  Although his PCA (the morphine) was stopped, he is still very confused and is hallucinating, which is probably a result of the anti-fungal medication he is receiving for the pneumonia.  The worst of the mucositis is over and he was able to eat a bit this morning, but he is still receiving nutrition through his central line. 

Despite the fact that the he received a much lower-dose chemo this round, the cumulative effect of the prior treatments and this one, is taking its toll on Jeff's body.  His movements are jerky and his hands and feet are constantly shaking.  He has more tubes and wires attached to his body than I care to count, he can't get out of bed without help, and right now he is giggling about something he thinks he is seeing.  My beautiful husband is in a sorry state right now, and all I can do is sit here and watch.  (Insert really bad word here.)

I'll try to update regularly over the next few days.

Day +12

I'm not in Hershey today, so I don't know if I have the complete story, but Jeff is running a temp and has pneumonia.  He is still stable, still on the morphine drip, and still receiving bagged nutrition.  I'll post more when I have a clearer picture of the situation.

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.

Not Coincidentally

Jeff's new donor is from Germany, and because Jeff has a mostly German ancestory and HLA tissue types are largely based on ethnic background , it is not really a big surprise that his donor is also German.  When I found out this little tidbit today, Jeff's donor became much more of a real person to me, and I got a bit choked up because this stranger from across the Atlantic Ocean is willing to give a part of himself to help save Jeff's life.  Once again, I thank all of you who are registered as bone marrow donors.

In other news, Jeff's kidney function took another hit, so we'll be watching things closely over for the next few days to see what happens.  His creatinine level will have to be much closer to normal before he gets more chemo, so the transplant date could get pushed back a bit.  In the mean time, Jeff has been getting IV fluid everyday to help things along.

 

Notes from the Frying Pan

When will I learn?  I have to teach myself this lesson every 6 months or so.  Lately, I've been feeling pretty run down.  So, I took a look at what I was putting in my mouth, and what I wasn't.  Well, turns out I was not drinking any water.  Duh!  (I hate that word, by the way.)  So, a couple of days ago I starting slamming water and just like magic, I feel much better.  I do not have that completely exhausted feeling at 5:19 when JD lovingly wakes me up with his calls for MAMA.  Why 5:19 you ask?  Good question.  JD likes to get up early and drink juice on the couch with his MAMA.  Lately, Hallie has also been keeping him company. 

Actually, JD did sleep in one day this week.  It happened to be the day that I didn't realize that my alarm clock set itself to standard time without informing me that it was switching things one week early.  So, when I woke up and saw that it was 5:36, I thought JD had slept in...but only for 17 minutes.  In all actuality, it was 6:36...something I didn't realize until Nancy called over an hour later wondering why I was so late.  Oops.  

More of the Same

Jeff was discharged Saturday, and is generally feeling well.  His appetite has not yet returned, but he still seems to have most of his taste buds, which will help him to keep his weight up.  He is on lots and lots of meds, including some at home IV vancomycin to help combat the bad bugs the hospital found in his body.  His counts are still very low, and he is regularly needing transfusions of both platelets and red blood.

We did had some great company this weekend in Hershey...Rich, Nicole and Danielle.  Having them here was good for all of us, and I'm still feeling the lingering effects of their positive energies.  This whole situation has left me much more sensitive to the vibes that people project, and I find myself trying to surround myself with postive projectors.  I've found that there are people who are a constant source of support for me, and that's largely because of the good feelings that just seem to happen when they are around. 

That being said, I am always consciously trying to project my good feelings and energy on to others.  Just because my family is going through a difficult time, doesn't mean that I have the right to drain people who are not.  I figure that as long as I can remain somewhat content and happy, then my happiness will be felt by those around me.  In a situation like this, I realize that isn't going to be possible all of the time, but I certainly can work to minimize the bad periods, and maximize the good.

Jeff's infections are under control, and barring anything new, he will be discharged tomorrow. His counts are still bottomed out, so it will be back to Day Hospital for transfusion support. Chemo prior to transplant is still scheduled to start on Nov. 4th, with new MUD cells transfused on the 11th.

Still Feeling Okay, But...

Jeff had fever yesterday morning, so he's back in the hospital.  JD and I had to make a quick mid-week trip home so that I could take care of some work-related stuff.  I have to admit that all the back and forth combined with the fact that JD hasn't been sleeping well is making me very tired.  I'm getting past the exhaustion with a little extra coffee, but that sort of backfires come bedtime, when I'm too wired to sleep.  Oh well, not my most pressing problem...

Anyway, thanks for all of the nice comments about my mom and my last post.  I'll try to continue to share things I think might be worthwhile.

It's Big

The enormity of the situation we face has not escaped me.  In fact, most days, it's staring me right in the face.  This morning when I found out about yet another relapse within the AML community of people that I have gotten to know and care about, I found a steady stream of swear words going through my head, and then for the first time in quite a while, I cried.  I guess I've accepted that this thing has happened to my family, but when I see that it's also happening to others...beautiful families who just want to have the chance to live a normal life, to laugh and to love each other, I get upset.

The thing is, I know that I can handle this, I know that regardless of what happens to Jeff, JD and I will be able to find peace in knowing that we have/will make the most of the time we have with each other and with Jeff.  Buddhists say that the miracle is not walking on water, but walking here, on earth.  Right now, I feel that statement so intensely, that I get goose bumps when I think about it.  Living for now and having each other now is what matters, and the fact that some do not get to live this miracle as long as others does not diminish their significance, and in many respects, I think it amplifies it.  My Mom has been dead for almost 7 years, and the profound affect that she had on me and the rest of my family is felt every single day, and I'm absolutely certain that I feel her more strongly than I would if she were here in the flesh.

So, if you want to DO something for Jeff, then please, live your life to its fullest.  DO something with someone you care about, MOVE your body and relish in the fact that you are living a miracle right now.  Dance in the kitchen.  Open your eyes to the splendid autumnal maple trees (that one is for my Dad, who never, ever, forgets to stop and smell the roses).  Laugh with your babies.  Hold them tight.  Enjoy them.  NOW.

Discharged

Jeff was dicharged on Sunday and is actually feeling pretty well considering the poisoning he just received.  Back and forth to Day Hospital for blood and platelets for the next couple of weeks...

Transplant has been scheduled for November 11th, with chemo starting on the 4th.  With any luck, we'll get there without any more delays.

Update

Jeff has been a resident of the Hershey Med Center since Saturday. We had a bit of a scare earlier in the week, but biopsy results are still showing no leukemia. Because of the scare, chemo was delayed until Tuesday afternoon, and he'll finish up this round tomorrow night. If he is feeling okay, and fever-free, I imagine he'll be discharged early next week. Then it will be back to Day Hospital for daily blood checks and transfusion support.

So far, the chemo has been a pain, but tolerable for Jeff. The hard part will be the coming weeks of neutropenia and the overall crappy feeling that comes from low blood counts.

For the next couple of months, Jeff will stuck in Hershey. JD and I will be spending part of every week at home, so I can work. We're putting lots of miles on the Forester, but JD is learning to be quite the traveler, and we're both getting used to the drive.

I'm hoping that Jeff will be well enough to come home by Christmas, but in the mean time, we'll be taking things day by day.

"The past no longer exists, and the future is not here yet." - Thich Nhat Hanh

A Note From Jeff

I would like to take this time to thank everyone involved with the situation I am in right know. Words can't express how grateful Jamie and I are for all of the support and help we have been given. It makes me want to fight harder knowing how many friends and family are pulling for me. I hate to narrow down my thank yous to certain people because I know there would be a pile I'd be missing. Every card I've received has given me a little more hope to get through this, and I just couldn't believe the outcome of the benefit dances. It is a good feeling knowing so many people are pulling for us. So, thank you from the bottom of my heart.

JD in Aunt Nicole's Hat

You May Have Heard

Because of the rumors and speculation floating around town, I asked Nicky if it would be okay for me to post what's going on with Mark and she agreed. (For those of you who don't remember, Mark is Jeff's brother, and Nicky is Mark's wife). To make a long story short, Mark was diagnosed with aplastic anemia, which is a blood disorder that results in bone marrow not functioning properly. He's being treated in Pittsburgh, and with any luck he'll be home and back on his feet some time soon.

I'm sure there are lots of questions regarding the fact that Mark and Jeff both have blood diseases, but everything I could say on the subject would be my own speculation, so I'm not going to say anything.

Jeff is feeling well, and eating even better in preparation for the loss of taste that's coming soon. He'll be getting a 4-day chemo regimen inpatient, starting on Saturday. Because he does not have any active leukemia, I'm hoping for a much easier week than he had back in July. Let's all keep our fingers crossed.

JD continues to delight me, and the fact that he is a mama's boy gives me a never-ending supply of joy. He is smart, beautiful and funny. He loves to pick on his dogs, and he is still a bit of a rough-neck. He is also spastic and wild, but quite honestly, I think we made him that way. JD loves to play with cars and eat freezer pops with Dada, and he's occasionally good for some snuggle time. He gives his best kisses before night-night, when he will kiss everyone in the room without hesitation. I'm pretty sure I hit the jackpot with my baby.

JD - 21 months (almost)

Discharged

Jeff was discharged on Saturday. The transplant will probably be in about a month. In the mean time, he'll be getting another round of chemo to ensure he remains in remission.

Be Informed

Please read this article.

Things Did Look Good

But, sometime late last night Jeff got the chills and started running a temp. His joints are aching, his head is pounding and his back hurts. He has a little bit of chest congestion.

So, Jeff is back in Hershey with his Mom (thank goodness for Marilyn), while I finish up the work week. He was admitted this afternoon, and we'll hopefully have a diagnosis soon.

On another note...

We can continue planning for the transplant, as GE has overturned Health America's denial. What a relief!

Surgery

The placement of the Ommaya reservoir went off without a hitch this morning. Jeff is now enjoying a little morphine and getting ready to eat lunch.

JD - 20 Months

The Whole Story

Instead of rehashing the entire story and annoying myself again, I'm only going to say that Jeff didn't get his Ommaya placed yesterday, and according to me, it was caused by a bit of myopia on the part of the surgical staff. It's been rescheduled for next week, and it seems that things will be a little better organized.

As you can see from Danielle's comment, she has been a bit of thorn in my side since the day she was born. She is, however, my "sister," and I love her to pieces.

A pitcher of long island ice tea and a hot tub is good medicine when you're feeling annoyed.

No surgery today. To say I'm annoyed is an understatement. Will explain when I get to a computer.

Another Port

Jeff's body is now stable enough to handle neurosurgery, and he will be getting the Ommaya reservoir "installed" on Thursday. This port will give the medical staff easy access to Jeff's central nervous fluid for the purposes of administering chemo and for sampling the fluid to make sure it remains leukemia-free. The neuro guys tell us that the procedure is pretty simple and Jeff's stay at the hospital should only be about 23 hours.

Other than a little bit of neurosurgery, we're hoping to have an uneventful week. We're still working out insurance issues, but I'm hoping to have a solution sorted out very soon.

JD is still the most lovable creature on the planet, and his dimples can brighten my day in no time at all. I'll have to post some more pictures soon.

Step One

We can now check off step number one. Jeff's biopsy looked good, and the doctor is calling it remission. Before anything else can happen, his kidneys need to heal, but it looks like we're on our way to another transplant.

Nothing New

We're still waiting on biopsy results - we should know something by tomorrow. Jeff's kidneys continue to show improvement and his blood counts are looking pretty good.

Back in Hershey

Jeff's counts are now stable and he is no longer needing transfusions. They took another chunk of bone marrow today for biopsy, and we're expecting to see good things. His kidney function is showing some improvement. He'll get another dose of chemo to his CNS on Wednesday along with more fluids to help with the kidney problems.

We are still having insurance issues. Hopefully everything will work out in the end, but I have to say it's disheartening to have to worry about whether or not you can afford a possibly life-saving procedure.

I would like to make some political statements on this post, but I don't think I can do it without being impolite, so I'll keep my mouth shut.

Discharged

Jeff was discharged late yesterday afternoon with orders to drink plenty of fluids and visit Day Hospital every other day. His kidneys aren't getting any worse, but they haven't improved much either. More later...

Admitted Again

I have way too many posts that are titled "Admitted." Oh well, I'll probably collect a bunch more before this is all said and done. Anyway, Jeff's creatinine level was a bit higher yesterday than it was on Monday, so Dr. Claxton thought better safe than sorry. He was admitted to the acute care wing of the 6th floor so that the kidney doctors could have their way with him. So far, he's just been getting fluids, peeing in little laboratory cups and last night they looked at his kidneys via ultrasound. Most likely, the damage was done by either the IV vancomycin or daptomycin that he was getting for his line infection, and his kidneys should start to get better over the next week.

Thank you for all of the good comments and quotes. I took the time to go for a run this morning, and for me, absolutely nothing works better than exercise to perk me up. As soon as Jeff is able, I'm going to have to get him moving around. It's obvious to me that the body and soul are intertwined in ways that can't be completely explained physiologically...the more you move, the better you feel.

Back in Hershey

We've settled back in Hershey for the week and had an appointment with Dr. Claxton yesterday. Jeff's blood work showed that his white count is up to 2.9, but his differential wasn't back by the time we left, so I'll guess we'll find out today whether or not he is making good cells. His platelets are still very low, but they're going to try and get the Ommaya in later this week with the help of some transfused platelets.

In addition to all of that news yesterday, it turns out that Jeff's kidneys are failing again, so most of his meds have been discontinued. They'll follow his creatinine levels closely this week to make sure that everything starts working properly. In the mean time, Jeff is still feeling a little weird and worn down. His taste buds have been rejecting everything but fruit and other sweet things, so he's not been eating much.

I can tell you that this has been one long, never-ending road, with way too many bumps, and smooth sailing is not expected anytime soon. I would like to think that I'll come out of this a better person, but in reality, there are certain hardships in life that don't really make you better, stronger or happier in the long run. This is one of them. You can only dance in the rain so long before your feet and hands start to prune, your body starts to shiver and you need to find shelter from the storm.

Just So You Know

Nobody is panicking over the money stuff. Aside from a minor meltdown by me, because this is just one more thing to stress about, we are all okay. At this point, I'm going to assume that the doctors and other people whose job it is to deal with such nonsense, will come to a resolution with Jeff's insurance company. We were originally told that the contract Health America has with Jeff's employer states that mini-transplants are covered, so I can't see how that would have changed right in the middle of Jeff's treatment plan.

Discharged

Jeff was discharged today, and we're home for the weekend. More fun in Hershey to come on Monday. Jeff is feeling okay, but is still on some IV antibiotics that we have to administer through his central line for a couple more weeks.

To add insult to injury, Jeff's insurance company has announced that they aren't going to pay for his transplant. This news came the day after we found out that Dr. Claxton had chosen a donor. Really, this makes no sense. They allowed the hospital to go through the steps of searching for a suitable donor, and only then denied the treatment. I'm not really sure where that leaves us, but I do know that no less than three people, including Dr. Claxton, spent all day on the phone trying to sort this mess out. It's no wonder that health care in this country is so ridiculously expensive. Insurance companies get to dictate who gets what, and doctors spend half their time fighting with them about it.

In the mean time, the final medical evaluations of the donor get postponed until the finances can be worked out, which results in everything getting pushed backed and decreases Jeff's overall chances of surviving this blasted mess.

I might have more to say about this later, but right now I'm exhausted and I'm going to bed.

Update

Jeff's headache is mostly gone, and generally he is feeling well. He has had a little bit of nausea, and he's a little groggy from the pain medication, but he was able to get up and shower today, which was a huge plus for those of us smelling him. Other than that, things were pretty uneventful today.

JD

Nicky sent me some pictures, and I especially loved this one. Thought you would enjoy. That's JD's cousin, Colby, in the background. (I haven't been to the hospital yet this morning, so I'll have to update on Jeff later.)

Staph Infection

Although Jeff does not have a fever, the cultures that they take from his line every morning started growing staph over the weekend, so they started him on another antibiotic. He can't be discharged until his line is clear, so we're here for at least a few more days.

Because the lumbar punctures that Jeff gets every week (for the chemo) have been quite painful, he requested that they use the x-ray machine for better aim. Well, turns out that it worked great. Jeff had no pain when the fellow doing the procedure put the needle in his back. The bad news came when the fellow realized that he never ordered the chemo, so Jeff had to wait with a needle in his back for an hour. Needless to say, my husband was VERY mad.

This morning, he has a pretty horrible headache, probably a result of yesterday's procedure. Hopefully, he gets some relief from the paid meds.

Maybe Tomorrow

If nothing changes, Jeff will be discharged tomorrow, after getting another shot of chemo to his central nervous system. We are again going to try and get 2 days off before having to come back here, which means that with any luck, we'll be home for a few days.

This week was not a fun one for Jeff. The infection caused his reflexive reaction time to slow, causing him to pass out in the bathroom. Luckily, his fall didn't cause any internal bleeding and he is fine, but having to have a cat scan of your head to make sure that you're not bleeding to death is a bit scary. (When you're low on platelets you can spontaneously bleed, so a fall is a huge deal. Jeff's platelets are around 15 right now - normal is 150 - 400.)

White count is 0.3 today...I'm hoping for a little bigger jump tomorrow, but I guess I need to get used to baby steps, as we're in this for the long haul.

Fever Free??

Jeff has been fever free for about 30 hours, and hopefully will remain that way so we can bust him out of here. His white count was 0.2 today, so I'm hoping that's the start of a real climb.

Hopefully, I'll be posting more good news soon.

Another Temp

Jeff ran another temperature early this morning, so it will be at least Friday before he is discharged. His white count is still lingering at 0.1, but nobody seems too concerned about it.

Fevers & Donor Drive

Jeff has an infection in his central line, so the docs started him on the appropriate IV antibiotic. His temp hasn't risen yet today, but he needs to be fever-free for about 36 hours before they'll discharge him. Let's hope he's home by Thursday.

The donor drive was a big success. We registered 186 new people and raised about $3500 to help with the cost of the tissue typing. Thanks to everyone who helped make the day run as smoothly as it did, and special thanks to all the new donors.

Don't Forget

Please don't forget about the donor drive:

Tuesday, August 11
Johnsonburg Fire Hall
4 - 8 PM

Jeff was admitted to the hospital again today because of fevers. Although it looked like he's been on the verge of recovering his blood counts for over a week, he is still not there, and actually, his white count is back to 0.1. Since October of 2007, Jeff has had a truck load of the most intense types of chemotherapy that exist, so it really shouldn't surprise us that his body is taking its time to recover. It's just frustrating, and Jeff would really like to start feeling better.

JD and I are going to stay home for a few days, while Jeff's mom takes care of things in Hershey. See you at the marrow drive.

The Plan

Well, we are home and very happy to be here.

Jeff had an appointment with Dr. Claxton today, and we now have a better idea of what to expect for the next eight weeks. For the next two weeks or so, we'll be traveling to Hershey twice a week for visits to Day Hospital, where Jeff will get transfusion support until his counts recover. Once his counts do recover, and he is making and holding on to his platelets, he'll get the reservoir installed in his head, through which he'll receive chemo to his central nervous system once a week. Also in two weeks, they'll perform another bone marrow biopsy, which will help Dr. Claxton to decide which chemotherapy regimen Jeff receives next. Regardless of the results, he'll be getting another week-long treatment in 3-4 weeks, to help his odds of being in remission at transplant time. If all of the transplant planning goes as expected, AND he is in remission or very close to it, AND his central nervous system is free and clear of disease, the transplant will take place in about 2 months.

Jeff's immune system is still severely suppressed, so if you're sick, please keep your germs at home. Other than that rule, I think it would be good for Jeff to get visitors and phone calls.

Nothing New

Not too much to report. Jeff is feeling okay physically, aside from the fatigue and weakness. However, both of our mental and emotional states could use some work. We have an appointment at clinic tomorrow with Dr. Claxton, where hopefully, we'll learn a little more about what to expect over the next month or so. I'm going to push for them to schedule his Day Hospital visits with 2 days between, so that we can go home and just commute back and forth. We miss our dogs, our bed, our families...I could go on and on.

JD had a little bout with a virus this week. He had a fever, a one-time vomit (all over my car, of course) and he has a couple of mouth sores. I think maybe it's that hand, foot and mouth thing that kids get. He was feeling much better tonight, and so far, Jeff has remained symptomless. JD has been an exceptionally healthy kid, so I shouldn't whine too much about this, but the timing wasn't exactly great. Then again, JD arrived into this world 6 days after Jeff's first transplant, so I should probably expect that my life is going to abide by Murphy's Law.

Anyway, with a little persistence and some late-night driving, we might get to sleep in our own bed tomorrow night. Three cheers for that.

The Donor Search, Etc

Jeff's counts are starting to rise. His white count is up to 0.3, and his red blood has been stable. He needed platelets as recently as Friday, but I'm hoping that no more transfusions are needed. Oddly enough, Jeff's taste buds seem to be making an early recovery. He was able to taste almost everything he ate today, and he downed somewhat normal amounts of food. Because he has lost about 20 lbs, and will probably lose more during transplant, we need to continue to keep him well-fed.

You may or may not have heard that the preliminary data available through the donor registry shows several 9/10 matches for Jeff. The hospital is currently working through the logistics of getting confirmatory typing completed on the possible matches, and choosing the best all-around person for the job. The process usually takes about 6 weeks, so we have to hope that one of the possibles works out in a timely manner.

In the mean time, please do not let this information deter you from attending our local donor drive. Jeff only has a match because of the thousands and thousands of people that have been registered in drives just like ours, and have committed to helping an absolute stranger. There are still lots of people who need transplanted, but can't get it because they don't have a suitable donor. PLEASE, please, if you fit the bill medically, make the right decision and attend the drive.

Breathe Easy for a Bit

Jeff's marrow was clean, which means that he'll probably recover his blood counts in remission. Now, we have to hope that the remission is durable enough to get him to transplant before relapsing.

I'm wondering where Danielle is right now...probably plotting revenge against me because I told the world that she gets out of the car too slow.

In Limbo

For me, waiting is the hardest part. Danielle and Paula will verify that I get annoyed with them because they take too long to get out of the car. I'm usually driving, so I have to get parked and get my stuff ready and then get out of the car. I still manage to beat them out the door by several steps. I then have to stand there WAITING for them, while they diddle-daddle. I don't think I'm a particularly fast get-out-of-the-car person, they are just slow. And, I'm impatient.

So, you can imagine that waiting for biopsy results is not very easy for me. I like to know what's next, or be planning what's next so that we can get on with our lives. We don't know what the next step will be until we know what Jeff's marrow looks like. Best case is that Jeff's marrow is empty and he actually recovers in remission and stays in remission until transplant time. Worst case is that Jeff's leukemia is becoming chemo-resistant and Jeff decides that enough is enough. The treatment of this disease causes enough pain and misery that at some point you have to look at your chances and decide whether or not it is worth spending, what may be the last few months of your life, in a chemo and gvh induced hell, or spend it relatively comfortably. Thirty year old men should not have to consider things like this, and neither should their wives.

Anyway, while we are waiting, I'm trying to be present to the moment, because really, that's all that any of us really has. Yesterday, while I was practicing being "present to the moment," and doing some of my work at Panera Bread, somebody managed to hit my parked car. Luckily, the damage was minimal AND they were nice enough to leave me a note with their name and number. I'm not sure if I'll bother getting it fixed. I like a car with character, and really, isn't that what bumpers are for?

The last little bit of excitement that occurred yesterday happened when JD got stung by a bee. JD is a curious little bugger and I guess that he wasn't willing to take my word that bee stings hurt. When my little man started screaming so suddenly, I knew exactly what happened, and confirmed it when I pulled the stinger out of his little thumb. He carried on for a bit, and showed my his puffy thumb about 10 more times before he went to bed.

Biopsy

Today, they'll remove a piece of Jeff's bone marrow for biopsy. This particular biopsy will give us a good indication of whether or not Jeff will recover in remission. Recovery of his blood counts is probably still a good week away, so we'll continue at Day Hospital every other day.

More of the Same

Jeff is feeling about the same as he was a few days ago, although with an increased steroid dose, some of the GVH is getting a little better. His spinal fluid has been cleared of leukemia (I think maybe I mentioned that before?), but he will be receiving a maintenance dose of chemo weekly via lumbar puncture until the time when an Ommaya reservoir can be surgically placed in his head. His blood counts will need to stabilize and they'll need to boost his platelet count before he gets the surgery.

JD and I will make the trek back to this morning. Being away from the hospital gave me a chance to refresh my perspective on this whole mess, and I think I'll now be much better able to take care of Jeff.

Recharge

JD and I came home to recharge for a couple of days. I can't even begin to describe how hard this is...well, I suppose I could describe it, but no need to upset everyone.

Jeff has his first Day Hospital visit this afternoon. He is quite weak and has some residual issues due to the GVH and chemo. Hopefully, the steroids will continue to resolve them, and his blood counts recover sooner, rather than later.

A Rally for Jeff

Apparently, the Mark Eckert household recently held a rally in Jeff's honor. Please keep in mind that if you send me pictures, they might get posted to my blog!!

I've once again been forced to do my work, and all other things requiring the internet at Panera Bread. They make a great cinnamon crunch bagel, and of course, I pair it with a morning Pepsi. Recently, I tried to stop consuming anything containing sugar....obviously, that didn't work out so well.


Jeff has been fever-free for about 2 days, and with any luck, he'll be discharged tonight. The steroids seem to have helped with his rash, and overall, he is feeling okay. Even though we'll still be spending lots of time at the hospital, it will be completely refreshing for that time to be as an outpatient.

Storytime

I find it very difficult to take pictures while Jeff is sick - it's not something I want to remember...but I thought you'd enjoy these photos from yesterday afternoon.

Much Better

Jeff actually took a shower this morning, and one quick walk around the block (otherwise known as the nurses/doctor station of the cancer wing). His fevers are less severe, but his rash is still pretty intense. After looking Jeff over this morning, Dr. Claxton decided that some steroids would be appropriate. Because he believes that the rash is causing the fever, he hopes that within a few days, the steroids will take care of things and Jeff will be able to be discharged for a bit.

No Change

There's been no real change in Jeff today. The doctors are keeping close eye on his rash, which seems to change by the hour, but his overall health is about the same. He got another dose of methotrexate to his spine, and was in quite a bit of pain for a little while...luckily, the hospital keeps lots of morphine on hand for such problems.

Monday

Real quick before I go to bed....

Jeff is stable and fully coherent, but still getting fevers.

JD is as happy as he always is, flirts incessantly with the nurses, and is content to play with whoever is watching him.

I'm hanging in there.

We've decided to stick with apartment life, but we're not sure which one yet. Will post address asap.

We're Moving

On Thursday, we'll be moving in with Jeff's sister, so please do not send any more mail to Chocolate Ave. I'll post our new address as soon as I confirm that I'm remembering it correctly.

Improved Status

Jeff's fever broke late last night, his heart rate slowed a bit, and he was able to breath much easier. Today he is still very weak, but much more lucid. His temp has crept back up a little, but the edema is much improved, and he is feeling much more human. Thank goodness - things were pretty hairy for a while.

Hopefully, his body is now strong enough to mount a recovery, and that he recovers in remission.

By the way, thank you for the comments, the cards, the money and all the rest of the support that you are all giving. We wouldn't be able to do this without you.

Today

Jeff is still hanging in there, but he's not having a very easy go of it this time. His fever remains at 103 or 104 and at times, his blood pressure is very low. He's not very coherent right now and sleeps most of the time. He is retaining fluids from the neck area on up, and has a rash covering most of his body. He is still very uncomfortable, but the sciatica-type pain is much better since getting the chemo through his spine.

He's receiving his 5th (and last) dose of his (regular-not spinal) chemo treatment today. His counts have bottomed out and he's received transfusions of both platelets and packed red blood cells. If you're looking for a way to help, please give blood, or platelets, or both.

Biopsy Results

The biopsy did not show any leukemia in his skin bump, which is good news.

Jeff's having some facial swelling that the docs are a bit concerned about - hopefully they have some answers about what's causing it soon.

More later...

Fever

Jeff's been running a 104 degree temp for several days. Tylenol doesn't seem to helping much, so he is quite uncomfortable. His blood cultures have been coming back clean, so it's possible that the fever is a direct result of one of the chemo meds. Just in case it isn't, they've started him on a couple of antibiotics.

No word on the skin biopsy. I'm really hoping that it's not leukemia cutis, but we haven't gotten any good news this week, so those hopes are not very high.

Jeff's counts are bottoming out, and he'll receive red blood and platelets today. He currently has no immune system to speak of, so we have to hope that he doesn't catch anything too nasty.

Thank you for all the nice comments....it's hard not to cry as I read them.

On a Lighter Note

I've finally reached ten followers on my blog. I'm pretty sure that there are more than ten people reading this thing, and Jeff and I would love to know who you are. All you have to do is click the Follow button and continue with the instructions. I really would like Jeff to know how many people are pulling for him. Things are getting pretty tough here...

Update

Jeff received his first dose of methotrexate through his spine yesterday. They'll alternate that drug with one called Ara-C, which Jeff has received as part of his chemo cocktails several times. The doctor is hopeful that within a week or two, his spinal fluid will look normal and that some of the sciatica-like pain he's been having will be gone. (He probably has two problems that are causing him the pain, the leukemia and some disc bulging, so the chemo might not take care of everything.)

In the mean time, he is being kept comfortable with a morphine drip, and regular doses of Ativan, which is for anxiety, and helps to relax muscles. He also has two of five of his regular chemo doses under his belt. Unfortunately, he's already running a fever, so a discharge by end of the week is unlikely.

We are still hoping for a remission, or close to a remission, so that Jeff can receive a mini-transplant from a yet-to-be determined donor.

**Because of the toxicity of the chemo involved in a full transplant, it's a once in a lifetime thing. So, the next transplant will be considered a "mini," and he'll receive a much milder chemo regimen to suppress his immune system before getting the donor cells. For a while, Jeff's cells and the donor cells will fight it out, in hopes that the donor cells take over and kill off the remainder of Jeff's bad blood.

More Bad News

The leukemia has invaded Jeff's spinal fluid. Not too much more to say about that except that he'll need to receive chemo through a spinal tap until they can install a port in his head. Some days you just need to say F**K.

He also has little bumps popping up all over his body, which the doctor thinks is leukemia cutis. They will biopsy one of these little bumps later today to confirm.

Donor Questions

There have been some questions about donor eligibility. To see the full list of guidelines, please go here. Everyone will be asked to fill out a medical questionnaire, and not everyone will be eligible due to past/present medical issues.

Please note that if you have had cancer, you are probably not eligible, but there are a few exceptions. Please see this page for details.

Marrow Donor Drive

The bone marrow donor drive will be held:

August 11, 2009
Johnsonburg Firehall
4 PM - 8 PM


If you have reservations or questions about becoming a donor, please feel free to send them to me. If you do so via blog comment, I will answer via blog post, so that everyone gets the benefit of the answer. If you'd like to ask a private question, please e-mail me at jmw280@gmail.com.

Lots of Tests

Jeff was admitted to the hospital today, but things are moving a bit slowly. He needs to have his heart evaluated and his central line placed before he can begin chemotherapy. He'll be receiving a 5-day protocol call CLAG-M, which consists of 3 different chemo drugs and Neupogen, which if you remember, is used to boost white counts.

He's also been having severe sciatica-type pain, so they're doing an MRI as I write this, and they'll do a spinal tap tomorrow to make sure this problem isn't leukemia related. I am convinced it's completely unrelated, because he's had this problem on and off, and it started way before he was initially diagnosed. Needless to say, I've been wrong before and I'll be keeping my fingers crossed that the leukemia isn't lurking in his brain.

Because the hospital has all kinds of good drugs available to them, Jeff is more comfortable right now than he's been in a long time. I hope they can keep him that way throughout the week. His blood counts are relatively stable, but low, and he is already neutropenic (meaning he doesn't have enough germ-fighting cells available and he is very susceptible to infection).

A Good Weekend

It was nice to have a few days at home before the real hard stuff starts. Jeff had a bunch of good moments, and we spent lots of time loving JD. He is such a delight that I can hardly contain a smile when I think about him, even during my darkest thoughts about this whole mess. I appreciate all of the comments on the blog...sometimes hearing from everyone can really help to keep me going.

Suites On Chocolate

Jeff will not be admitted until Monday, so we'll be coming home for the weekend. We've found a place to live while we're here...looks like this.

Our address is:

Jeff, Jamie & JD
1428 East Chocolate Avenue
Suite #3
Hershey, PA 17033

Sometimes I forget what's going on, and I revert back to myself...happy and content (as content as I get) and completely thrilled with my baby. Then everything hits me again and I remember our situation and the obstacles we have to overcome and I groan to myself in disbelief. Luckily, I can usually conjure up enough hope to keep moving and keep on keeping on.

Danielle's Comment

**For people who don't read this blog's comments, I've pasted Danielle's comment below.

FYI:

If you are interested in donating immediately, go to www.marrow.org
you can click the join registry tab and then join now! its very simple! you sign up online and then they send you a kit in a few days directly to your house. you swab your mouth to get a few of your cells for them to test, and send the kit back. This is very fast, waiting for a local bone marrow drive may be a few weeks.


If you are interested in a bone marrow drive, there are numerous drives throughout the state. www.marrow.org can give you the locations of these drives. once you clicked the join registry tab scroll to the bottom and select join in person. When you join in person, they will either swab your mouth or take a blood sample.

To make an immediate impact join online and have the kit sent to your house!

New E-mail Address

In addition to e-mailing Rhonda at ronderh@hotmail.com, you can also use the e-mail address marrow2live@gmail.com. We set this up to make things a little simpler, so that people can easily pass the address along. As soon as the details of the drive are firmed up, I will post them on the blog.

Today

Jeff's spirits were high today and I saw many glimpses of his former self. Sometimes it's just easier knowing what's coming. Right now, JD is falling asleep on his Daddy's chest, and if my camera had any batteries, I would take a picture for everyone.

The chemotherapy protocol that Jeff will be receiving is a 5-day in-patient treatment. I'm assuming that if he is fever-free at the end of the 5 days, he'll be discharged into my care until the time comes when he does get feverish. After about 2 weeks, they'll do a biopsy to see whether or not he is in remission. At that point, if he is in remission, we have to hope that he stays there while another donor can be arranged.

Speaking of donors, many people have mentioned that they would like to have the donor drive named just for Jeff. Let me just say a few things... it is highly unlikely that any of you will match Jeff. Statistically, to find Jeff's match, we would need to test thousands of people. Luckily, there have already been thousands of people who have been tested and have volunteered to donate for anybody who needs it. Without people volunteering to donate to anybody, people like Jeff would not have a chance in hell of finding a match. Please reconsider your thoughts on this subject.

Doctor's Appt.

Jeff's blood showed 10% blasts today, and we'll know the results of his biopsy on Thursday. We expect he'll be admitted some time over the weekend, but it could be as late as Monday. He'll be getting a different chemotherapy protocol in hopes of keeping the leukemia guessing. They've started the search for a donor, but we haven't heard any preliminary results. Like I mentioned in my last post, please send Rhonda an e-mail if you're interested in getting your name on the donor registry.

Be A Donor

Over the next few weeks, the transplant coordinators in Hershey will begin the search for an unrelated bone marrow donor for Jeff. There's a reasonably okay chance that they will be able to find a match, but it is not a certainty by any means. In addition, there are lots of other people fighting for their lives who need donors.

In order to help Jeff and others, my neighbor and good friend Rhonda will be organizing a bone marrow donor drive in our area. In order to get the Registry staff to come here, we need 100 people to volunteer ahead of time. So you know what you're getting into (it's pretty simple and totally worth it), please click on this link. If you're still interested after reading about your commitment, please send Rhonda an e-mail at ronderh@hotmail.com. She and her committee will take care of things from there. Also let her know if you'd like to be on the committee....there's a little bit of fundraising that needs to be done so that we can help the marrow registry to cover the costs of the drive.

The Plan

We've asked for a couple of days at home, so we won't go back to Hershey until Tuesday. They'll immediately do blood work and a biopsy. If it's obvious from the blood work that the leukemia is progressing, he'll be admitted for treatment right away, if not, we'll have to wait for the biopsy to confirm the relapse.

We'll learn more on Tuesday about the treatment regimen that Jeff will be getting. Because he's relapsed fairly quickly after the last round, he'll be getting a new combination of chemo drugs, but I don't know what they are yet. The transplant coordinators will start looking for another donor, because ultimately, Jeff is going to need another bone marrow transplant, and they believe that an unrelated donor will give him the best chance at long-term survival.

Probable Relapse

Upon closer examination of Jeff's blood from Monday's visit the to Hershey, the pathologists have determined that Jeff has 5% blasts circulating in his bloodstream, which most likely means relapse. They'll confirm it sometime soon, but he'll most likely be admitted to the hospital for treatment by Monday.

I'll post more when I know it. We're still waiting to hear from the hospital as to what the treatment plan will be.

Good check up in hershey today. Posted via cell phone.

Jeff, JD and Spongebob

Jeff's been doing pretty well. His blood has been looking acceptable and he's been completely weaned from the steroids. His energy level is almost back to normal (my opinion - I'm not sure where he thinks he is on that topic), and he continues to work 20 hours a week. We'll go back to Hershey at the end of the month, and with any luck, the doctor will give the go-ahead to go back to work full-time.

Since I would much rather write about things other than Jeff's health, I thought I would fill you in on what JD has been up to. Have I mentioned that I have the cutest baby in the world? Anyway, he's learning lots of new words, and last week he actually pointed at me and said, "Mama." We've also discovered that if we point to Spongebob and ask JD "who's that?", he says, "Spongebob"....well, his version of the word, and it's actually pretty recognizable.

JD loves playing with cars and tools. He walks around the garage for 20 minutes at a time, carrying a wrench and "fixing" stuff. I guess in that respect, he's taking after Jeff. He prefers the 4-wheeler to the tractor, loves playing in the sandbox, and fills up his Dad's cart with rocks. He already loves the water and has no problem sticking his head directly under the garden hose. I'll post some new pictures soon.

Speaking of Vampires

The Twilight series of books (and now movies) has caused quite the stir and re-ignited readers' interest in vampire literature. Just check out the book selection at Wal-Mart, and you'll find a bunch of vampire stuff that wasn't there a year ago. The four books, written by Stephanie Meyer, were very enjoyable, and I'd recommend them to any female reader who is looking for a entertaining read.

Anyway, that being said, I have my own vampire story. JD has been refusing to lay down while I change his diaper. So, he stands on the changing table, while I struggle to fasten the diaper in some manner that is still effective enough to hold the poop inside. While he stands there, he wraps his little arms around my neck in the best feeling hug...until his little teeth sink into my neck.

Right now, I have red bite marks on my neck from where he bit me this morning and refused to let go. The more I protested, the harder he clenched his teeth and finally, I had to give his little butt a smack so that he would let go. This, of course, hurt his feelings, and even though I'm the one who has bite marks on my neck, I felt horrible for making him cry. But, this wasn't the first time he's bitten me and probably won't be the last, so I'm going to have to figure out a better way to get him to let go...or stop biting me completely.

Sorry for the Delay

We had a bit of a scare this week, and I'm going to refrain from going into detail. At least for the time being, everything is okay, and we're proceeding with normal.

A Little Break

Like every other place, my company has been hit pretty hard by the recession. In light of a multi-department shutdown of production, some of us salaried employees are only going to be working about 20 hours a week for a little while. I could pretend to be disappointed by this, but nobody would believe me. I'm hoping that the weather gets nice soon, because the 20 hours/week that I won't be working, I'm planning on spending with JD...hopefully in a pool or park some where.

Unfortunately, my first day off (tomorrow) has to be spent in Hershey. It's just a regular check-up, but check-ups are still a pretty scary thing.

Follower Gadget

If you look to the left sidebar on this page, you'll notice that I've added a "Followers" list. I'd love to know who is reading this thing, so if you have a second, go ahead and click on the Follow button...it's self-explanatory from there. Thanks!

Book Club

I'm in a book club. What? Book Club. What? Yes, I'm in a book club. You almost always have to tell people twice that you're in a book club. Whenever I mention this hobby to someone, they look at me like I'm nuts. They also ask me questions like, "So, do you all read, like, a chapter of the same book and then talk about that chapter each month?" Well, actually, yes, we do all read the same book, but we read the whole thing, and we do so about every three weeks. And, yes, we all have our own copy of the book. People find the fact that we all have our own copy to be a bit indulgent, but those are probably people who don't love books.

Anyway, the last book we discussed at Book Club was A Walk in the Woods, by Bill Bryson. Bill Bryson writes mostly non-fiction stuff, and this particular book is about his attempt at hiking the Appalachian Trail, which is a 2000+ mile long trail that stretches from Georgia to Maine. The trail is fairly primitive path, which is maintained by many clubs and organizations and has very rudimentary "lodging" along the way. Most people who hike the trail do so in sections, or as day hikes. There are however, others, called thru-hikers who choose to hike the whole path in one season. These are the die-hard hikers, with big packs on their backs that carry everything they need for a couple of months in the woods. Bryson attempts a thru-hike with an old friend, and although they don't make it all the way, they give a valiant effort and Bryson makes their journey funny and informative. A Walk in the Woods was an easy-to-read work of non-fiction.

Some people who read the book (including a couple members of my club) get the urge to go hiking. I did not. In fact, the discomfort felt by Bill and his friend somehow reminded me of sitting in a hospital room staring at Jeff for a month. That was uncomfortable (especially when you're carrying around 50 extra hiccuping pounds - Yes, JD caused me to gain about 50 pounds), and to me, everything about hiking in the woods for several months straight is uncomfortable. Sleeping in a tent, eating jerky, and walking 15 miles a day (while carrying a 50 lb pack) is something that I would probably enjoy if it was only for a day or two, but the thought of any more than that makes me cringe and think of hospitals. Weird.

Next book is Loving Frank....a work of historical fiction about Frank Lloyd Wright's affair with Mamah Borthwick. More on that later.

Hershey

Monday found us in Hershey again for another check-up, which went well, although we're still dealing with some persistent GVH. Jeff was on his way down to almost no steroids when that bugger of a rash showed up again on his face, hands, trunk and legs. So, Dr. Claxton bumped the prednisone back up to 40 mg/day, which Jeff will take for about a week or until the rash settles down. Then we'll go back to cutting the dose in half each week until he can stop taking it altogether. Other than that, his blood looks okay...there are no blasts floating around in his bloodstream, his white count looks good and his H&H are holding steady. His platelets haven't quite found their footing yet, but Dr. Claxton doesn't seem too worried about it.

JD & Chance

Interesting Stuff

When I was little, I was really good at math and I loved it. I even asked my mom to buy these math workbooks, which I did for fun and that were always several grade levels ahead of where I actually was. Anyway, my math genius (I'm saying that tongue in cheek - I am by no means a math genius) continued through elementary school, but somewhere around middle school I started to falter a bit and decided that I didn't even like math. This continued through high school, and even though I did just fine in calculus without any real problem, I didn't think that I really wanted to be bothered with anything math related. Then, I got to college. I took some math courses along with some chemistry (that of course, relies on logic and mathematical type thinking), and I once again realized that I loved the stuff. So, what is my point in all of this and why the heck am I talking about it? I'm getting there.

A couple of years ago, I read that boys and girls don't really show differences in mathematical aptitude until the junior high years and the expected causes had something to do with society's expectations of boys and girls and the way that the sexes are taught differently. I thought it quite curious that the timing of my loss of interest in math exactly coincided with what these studies were saying, and I realized that in some ways, maybe my love of math was trampled by society and its expectations of me. However, I certainly couldn't make any conscious connection to something that happened to cause this, so I continued to wonder how and if society and my teachers could really dictate the way I feel about something.

On to Larry Summers, who in 2005 made a statement that there are innate differences between the genders and that men are naturally better at math and science, and that is why there are way more super-genius men than super-genius women. His remarks were completely overstated by the media and it caused him lots of trouble. I remember thinking to myself (even with all of the media hoopla) that Larry is probably right. Because there are innate differences between men and women (I think we can all agree to that), then it is very possible that science and mathematical ability is one of the ways that this difference manifests itself, and I was okay with that. However, I'm always open to new data and I stumbled across some at one of my new favorite websites, tnr.com. Basically, it says that, "gender bias and sexism could play a bigger role in academic achievement than we probably think," and it backs up this comment with some studies from other societies that show no gender gap in math test scores, and also that the gender gap in college-level math is much smaller when a female is taught by a female professor. Let me also mention that the gender gap problem with math and girls is also seen with reading and boys.

So, what can we learn from all of this? Well, I think that this information can teach us something about how to raise our children. Because this little-recognized problem is allowing both genders to slip through the cracks in areas that they might otherwise excel, we can consciously decide to start treating our boys and girls more equally. This is probably more difficult than just making sure you read to your boys and cheer on your girls when they get excited about math, but maybe those are two places to start. Hopefully, just by being aware that the problem exists, we can heighten our expectations of both our boys and our girls, thereby increasing the probability that they can learn to be successful in whatever field they choose.

Good Quote

It was on my fifth birthday that Papa put his hand on my shoulder and said, 'Remember, my son, if you ever need a helping hand, you'll find one at the end of your arm.'

- Sam Levenson

My Audience

I expect that most visitors to Respectfully Sassy are looking for updates on Jeff's health or pictures of JD, and I don't really expect that people are much interested in the other things I talk about. For the most part, I've been avoiding posting anything extra because my target audience has become those people mentioned above, and when you write, you really shouldn't be neglecting your audience. However, I'm sure there are a few people who read this blog that will appreciate my musings on life, and my comments about books or being a mom, or whatever else I'm wondering about. So, I think I'll start writing a little bit more about things other than leukemia, white blood counts and Jeff's general state of being. Don't worry - I won't leave those things out, but I am going to add some extra stuff. After all, before I was consumed by being the wife of a cancer patient, I was a real person with my own identity, and quite honestly, I don't want to forget about that person.

Jeff, JD, and Me

Earlier in the week, Jeff had some sort of flu-like bug that seems to have gone away, which is great, because neither of us were looking forward to another trip to Hershey so soon. Little problems like this remind us that we aren't out of the woods yet, but it was reassuring that he was able to get over the illness without any extra interventions. Anyway, enough about Jeff. I would much rather talk about JD!

Easter morning JD found his basket (right in the middle of the living room), and immediately started babbling about his excitement. He opened up a camouflage plastic egg (I have no idea where the Easter Bunny comes up with these things) and had a quick bite of a peanut butter egg before moving on to opening his present. As soon as he saw the Little People airplane, he said "Oh, Wow!" Now, keep in mind that JD doesn't say too many (if any) words yet. He is limited to, and I may be stretching things here...Da, Ma, and Dog - which sounds a lot like Daaaaa, which he yells, while pointing at Hallie and Chance. So, it was quite a treat to hear such profound words come out of his mouth. He also got a pair of light up sandals, which he wanted to put on right away. I'm afraid that his little piggies are sticking right out the end of these size sixes. The kid has big feet.

I am enjoying having things back to semi-normal, and when I got home from work yesterday, Jeff was feeling well enough to watch JD while I took a nap. I felt like a new person when I woke up, so JD and I whipped up a pot of chili (JD helped by getting all of the potatoes, onions and pans out of the cupboards and throwing them on the floor) and played together until it was his bedtime. After that, Rhonda and I did our P90X workout (we're in Week 4) and I finished off the night with a soak in the tub - which by the way, Rhonda, felt like I was bathing in Icy Hot. I'm not sure if I like that stuff!!

Happy Easter

Well, we got to spend Easter at home and everyone is feeling relatively well. Jeff had another check-up last week, and his blood work, once again, looks good. Because of the rapidity at which AML hits its victims, it will be a long time before we won't be worrying about Jeff's blood work. But, like I tell Jeff, we have to live each day one at a time and expect him to remain healthy, because if we spent all of our time worrying about a relapse, then what's the point of living?

Jeff is continuing on his way to recovery. He feels well most of the time, but is a bit wired and quite unlike himself from the steroids. As he is weaned from them over the next few weeks, I expect that my normally laid-back husband will start acting a little more like himself. His drug regimen is still pretty extensive, and in addition to prednisone, includes an anti-viral, an anti-fungal, an antibiotic, anti-anxiety medication, insulin, prescription strength Prilosec, and two immunosuppressants. So, you can imagine that life isn't quite back to normal yet, but it's way better than it was a month ago.

Too Cute Not to Post

Yellow Boots

Remission

Jeff's biopsy showed that there is no residual leukemia in his bone marrow. We can all rest better tonight and Jeff can continue on his way to complete recovery. Everybody should have a drink to celebrate!

Feeling a Little Better

Jeff is feeling much better now than he was last week at this time. His rash is pretty much gone and he's now down to 100mg of prednisone per day. At this dose, we won't have to worry nearly as much about his blood sugar, and the other side effects should also lessen considerably. The steroids do make him very hungry, and even though he can't taste much yet, he's been eating like a horse. The labs that were drawn on Wednesday looked pretty good. His platelet count is still very low, but he's making enough to avoid an extra trip to Hershey for a transfusion. There were no immature cells in his blood stream, so we have hope that the biopsy (to be taken Monday) will show that Jeff has recovered in remission.

Home

Jeff is making enough of his own blood for us to come home. He'll have a biopsy next week at his doctor's appointment, and we'll go from there.

Day 36

Well, I was thinking that we've been here forever, but I guess it's only been 5 weeks. Although, I must say that I wouldn't even want to be away from home for 5 weeks if I was on a vacation, and this is nothing like a vacation.

Jeff's white count is back in the normal range. His H&H is improving very slightly every day, but his platelets are still dropping, albeit very slightly. He hasn't needed any transfusions since Tuesday, and hopefully, we'll see an increase in platelets soon, so that we can come home.

A Better Day

Jeff was feeling much better today...less itchy and dry, and only spent about one hour in the hospital. He did not need any blood products today and his white blood count is up to 2.5. The rash is slowly dissipating. The only raised areas of his skin are on his legs and arms now. His face and trunk are looking much better, and some areas are very close to normal now. I'm hoping at his doctor's appointment next week that they decide to start weaning him off the prednisone. This diabetes stuff is a pain in the butt, and the steroids also make him quite anxious.