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.