Whistle Your Cares Away

Jeff asked me to help him change the ringtone on his new cell phone.  He chose “Whistle Your Cares Away,” a lively tune which has a few bars of actual whistling in it!  He is pleased with his choice.  It epitomizes his attitude toward his disease.   

Well, we knew Vidaza was a long-shot (only 6 out of 100 patients get the desired result).  Dr. Kennedy says Jeff may have gotten some benefit from Vidaza but the results of last week’s bone marrow biopsy are disappointing.  He now has acute leukemia.  He  has 23% blasts in his marrow (up from 18%), the 5q deletion is still present and more chromosomes are involved.  There is a translocation of 17 and 20 in 15% of his cells. 

Beginning sometime next week, he will have in-patient infusion treatment of two chemotherapy drugs, Ara-C and Daunorubicin.  Side effects include hair loss (oh, well) and may injure the heart (oh, dear).  The drugs will be given over several days or a week and he will stay in the hospital for another three weeks or so.  The desired result, according to Dr. Kennedy, is “empty marrow.”  Following this course of treatment his bone marrow will be tested again.  If, after 2 (or more) biopsies, the leukemia is in remission, then he can have his bone marrow/stem cell transplant. 

Good news: 

The National Marrow Donor Program (NMDP) has found FOUR non-related matches (plus Paul as a back-up) and further blood tests are being done on the one they think is best. 

More good news: 

Jeff’s sister, Debbie, will visit for a week while Jeff is hospitalized. 

Pastor Wiseman is organizing an event to promote the bone marrow registry.  Stay tuned…

Jeff’s good humor continues.  He said, “Of course I have acute leukemia.  I wouldn’t get the ugly kind.” 

Prayer Request:

Pray for the beautiful donor who must, unfortunately, play the waiting game in parallel with us. 

The Munsters and the Significance of Others

Today Jeff had a biopsy to see whether he is ready for his bone marrow/stem cell transplant.  The procedure didn’t cause him too much pain.  His hip feels a little bruised tonight.  Results could be ready by Friday or Monday.  Maybe he’s finished with Vidaza treatments.  Maybe not.  Dr. Kennedy will consult with Dr. Porter and… we’ll see.  If we can’t stand the suspense, we could call Maria the Matchmaker at Penn and ask.

Jeff has always been good at identifying actors we’ve seen before and naming the movies or shows  they’ve done.  I am no good at this.  I only know when an actor looks familiar.  We received some good DVDs from the National Marrow Donor Program (NMDP) along with a packet of information.  We watched them the other night.  No actors; just real doctors, nurses, patients, caregivers, and social workers.  The patients all looked sick (go figure) and, although it was helpful, it was still difficult to watch.  A doctor with an impressive, pronounced widow's peak droned on - very informatively, don't get me wrong - about transplant this and recovery that...  I was about in tears when Jeff piped up, "I think he was in the Munsters!"

Among the many aspects of transplantation that we were told to consider (on these helpful DVDs) was to have a back-up caregiver in case I couldn’t do the job for some reason.  Jeff is excited at the prospect of choosing one or two “significant others.”  So, don’t all line up at once!  It turns out the job is a pretty big one.  We will circulate the DVDs to prepare prospective candidates.  Look for those hot titles in your mailbox and you’ll know whether you’re on the A List!

Jeff’s gray hairs don’t appear gray with Vidaza.  They’re darker and his hair is a teeny bit unruly.  The message here is:  He’s Still Got His Hair! 

And now the Hungarians!

I am delighted to add to my previous blog on the religions represented by those praying for Jeff:  the Hungarian Reformed Church of Roebling, New Jersey.  Thanks, Michelle (a co-worker at Rider University).

Things We've Learned

I opened the Emmaus Road newsletter, News From the Road, and learned that today is World Cancer Day (and Keith’s birthday – but we already knew that.)

http://www.who.int/mediacentre/events/annual/world_cancer_day/en/index.html

Dr. Kennedy told us that Paul and Jeff have 8 out of 10 haplotypes in common.  Nice!

The skin rash that has plagued Jeff for a year or two is called petichiae and is related to his disease, making that the first symptom of MDS that he experienced.  It appears on his legs and if you enjoy gross medical pictures, you can Google it.  No link provided here.

Thanks to Miss Coaches, Jeff’s high school Latin teacher, Jeff was able to pronounce petichiae properly on his first try.  Amy could not. 

http://www.merriam-webster.com/cgi-bin/audio.pl?petech02.wav=petechiae

Jeff’s treatment buddy, Marty, the Irish Dude, is named Daniel Martin, thus the confusion over his name – Marty or Daniel?  Marty arrived for treatment Monday using a cane and was deferred for treatment because he needed another blood transfusion.  Jeff still has not needed any.  Marty needs prayers, too.

Jeff should avoid salty foods although he seems to crave them.  If he indulges too much and then spends too much time on his feet, his calves swell and become rock hard.  He claims that it’s hard to tell if it's muscle or…

Jeff’s blood counts have been “excellent” according to the oncology nurses.  He brags about his “excellent” blood and boasts that his blood is the envy of… the cancer ward!  Some of his counts are actually in the normal range now, although low.  Kim says her dad looks like he is, “on the low side of normal.” 

Nick can not only rise early in the morning to drive Uncle Jeff to treatment, he is man enough to watch the injections!  He is a good companion, too.  Way to go, Nick!

It is worth advocating for yourself.  On Jeff’s request, Dr. Kennedy was willing to schedule this month’s biopsy early enough to possibly avoid the next course of Vidazzling.  If bone marrow looks good (or more scientifically, meets some medical criteria) and there is a match, he could conceivably have his transplant soon.  We'll see.  He asked Dr. Kennedy if he should stop trying to “align the stars.”  She assured him it was worth trying to get the results of the biopsy in enough time to schedule the transplant before - or instead of - the next course of Vidaza.  Matchmaker, Matchmaker, make me a match…