Wednesday, October 16, 2013

Gifts, Treasures and Light the Night

Monday was an exciting day at our house.  In fact, it was so exciting that Jeff ran over to Kerry and Theresa’s house at 7:30 a.m., collected Rosie and brought her to our house to watch the goings on!  We had our two big oak trees removed!  One was diseased and the other, although healthy, was heavy with branches to one side.  Jeff was concerned it would cause damage to our house or a neighbor’s house if a superstorm toppled it.  It was sad to see them go since it will severely change the way we use our back yard.  We will replant – a willow oak or tulip poplar or something.

Back to the exciting part:  One worker was lifted high into the tree on the ball of a crane and then spent the day in the tree, coming down only for lunch. There were loud trucks and loud men, enormous chainsaws, sawdust.  I had warned Jeff that he wouldn’t be able to keep Rosie at our house with all that noise!  Boy, was I wrong!  Jeff and Rosie watched from the back porch, in a lawn chair at the back of the garage, from the dining room.  They went for walks so they could see it from vantage points all around the block.  I should have guessed that Rosie, the daughter of two engineers, would be right there with Jeff, enjoying the hub-bub.  Jeff sent a picture of Rosie to me at work with the caption, "Watching the Tree Men.  It's a nail-biter!"

One day last week Jeff called me at work.  He had just arrived home and noticed there was a delivery – a box from Gift of Life.  He put the phone down to open the carton, then picked up the phone and said, “There’s another box.  Wait a minute.”  I heard sounds of packaging material rustling.  Finally Jeff said, “It’s a crystal, a trophy.”

I teased, “Well, it was worth having a transplant if you get a trophy!”  It has both Nicole’s and Jeff’s names, the date they met and “Partners for Life.”  Nicole also has one.  It is a beautiful commemorative piece.   

We have had some very nice email messages from the staff at Gift of Life and family and friends who supported our teams for both the Gift of Life and the upcoming Light the Night event.  It seems most nights we have a few emails to write, thank you messages mostly.  And so we are still riding the high from meeting Nicole. 

It seems as if we will have a continued relationship with Gift of Life and we are happy to help them promote the value of swabbing.  Our Light the Night coordinator has plans for Jeff as well.  Stay tuned for news of future public speaking engagements.  

Lately, when answering the question, “How was meeting Jeff’s donor?” I have managed to make people cry.  We have shared the children’s book we wrote for Nicole’s children – that makes people cry.  Several people told me that our last blog entry, “The Big Meet,” made them cry (and I worried it was too bland).  It takes me a little by surprise when others cry while I do not (that’s new!).  On occasion, a tear escapes but not so much that I can’t continue to talk.  I don’t mean to wring tears out of the people around me but I realized that I am grateful for their emotion.  It reminds me that the link between Jeff and Nicole is not an everyday, commonplace thing.  It is a treasure, a gift. 

There is still time to support our Light the Night Team.  Use the link on the right, if you are so inclined.

Monday, October 7, 2013

Gift of Life – The Big Meet

On the eve of The Big Meet we enjoyed a nice dinner in Paramus with Gift of Life staff members, Gregg and Tamara.  We had an opportunity to ask questions about the process from their perspective and to tell about Jeff’s diagnosis, treatment, transplant and our exchange of letters with Nicole.  We talked about the many people who had a hand in the matchmaking:  from Nicole’s swabbing at an event to the lab technicians who processed her sample and those who identified her as Jeff’s match, the Gift of Life staff members who tracked down Nicole’s aunt and eventually Nicole, the medical staff who collected her marrow, the volunteer who took the marrow from New York to Philadelphia, etc.  Jeff figures thousands of hands had something to do with his recovery.  You have to feel a little jealous of people like Gregg and Tamara who get to work daily toward such happy outcomes.  Anyway - good food, good company.

We woke up early on the big day.  Jeff was nervous about speaking in front of a crowd although he was well prepared.  We were both a little giddy as we waited to head over to Van Saun Park.  I confess that I found myself pacing the hotel room aimlessly.

The Big Meet did not disappoint although there was one minor glitch.  Nicole did a beautiful job on stage talking about her experience but instead of Jeff telling his story, his time on stage was spent standing by while someone else related his tale.  It’s all good.  It probably saved us all from getting too blubbery as we most certainly would have if he’d delivered his heartfelt message to Nicole in front of the microphone.  Instead, he delivered his speech after the walk to a small crowd including Nicole, a few family members and myself.  (There were tears.)  Later Ruth, a Gift of Life staffer, told Jeff there would be no problem checking “public speaking” off his bucket list.  She will see to that! 

Jeff and Nicole led the walk, Nicole’s husband, Scott, and I followed.  Our team of twelve family members walked and ran by us. Our team members were able to spend some time after the walk/run getting to know Nicole and Scott.  We felt immediately as though they were extended family to us.  Lots of laughter, plenty of hugs, good conversation… a joyful occasion.

There is no gift we could have bought for Nicole to appropriately commemorate the occasion.  We’d decided hand-crafted gifts were the way to go.  Jeff, of course, made a spoon and spatula for Nicole.  And we presented her with a children’s book that we began writing for her children around the time we learned her identity in May.  It is based on the transplant experience and is called The Butterfly and the Carpenter Bee.  You can probably guess which one is Nicole and which one is Jeff. 

The Mel Cohen Memorial 5K for Gift of Life was a great celebration for bone marrow donors and recipients!  It was wonderful to talk to other recipients, hear their stories, celebrate their survival and to hear about their meetings with their donors.  We had the pleasure of meeting Jay Feinberg, founder of Gift of Life.  He is a soft-spoken, gracious man.  It was an honor to meet him and thank him for his part in Jeff and Nicole’s story.  

We also met a few donors and caregivers.  Mel Cohen’s wife, Sandy, told us Gift of Life and Mel’s donor gave her four more years with Mel.  She is grateful for those bonus years.  This event, in Mel’s memory, is a successful fundraiser for Gift of Life, the top team raising an incredible $20,000 for the organization.  All of the proceeds will cover processing costs associated with swabbing.  (Thank you, team members Becky, Sam and Kerry for swabbing!)

We had lunch with Nicole, Scott, Kerry and Kim and spent the rest of the day, into the evening and the following morning talking and talking and talking.   Nicole and Scott were polite enough to watch a slideshow of our un-edited Bermuda photos as well as several shots of little Rosie.  (Theresa and Rosie were not able to share the occasion due to a medical emergency in Theresa’s family.  They could use your prayers.)  

Jeff and I thank all of you for your love, prayers and support on this momentous occasion. 

Friday, October 4, 2013

T Minus 2 days!

The “Big Meet,” as Nicole calls it, is only two days away!  Marti from Gift of Life called to tell us what to expect on the big day: two separate tents for Jeff and Nicole with staff members on duty to keep our two “stars” apart until the proper moment, the order of those called to the stage (Jeff then Nicole), the music (including the Maccabeats, the a cappella group from Yashiva University whose YouTube video campaign on behalf of Gift of Life is legendary!), the refreshments (I’m thinking of Pop, “Will there be refreshments?”  Of course!), who we may meet (Jay Feinberg, the founder of Gift of Life, and members of Mel Cohen’s family for whom the event is named).

Dog care is covered - thanks Kerry, Theresa and Emily.  Bags are not yet packed although I have already set aside my waterproof mascara.  Weather should be decent.  That’s good.  We have given some thought to what we might do with Nicole and Scott on Monday (hiking, maybe?).

We have a team of about ten people and have had to adjust our team fundraising goal twice!  Thanks to Kim’s friends for our most recent contributions and to all who are supporting us.  It’s not too late if you haven’t.  Use the Gift of Life button on the sidebar and choose “Support Bist du Stark? (Are You Strong?)” under Jeff’s picture.  

We are so pleased to help Gift of Life work towards their vision,

“a match, anytime, anywhere, for anyone.”

And, of course, we can't wait to meet Nicole!  We’ll post pictures - stay tuned!

Friday, September 20, 2013

One Less Pill and One New List

As Jeff dressed early this morning, I assured him that his Bermuda tan had faded to a respectable shade for his appointment with Dr. Porter.  He’d been worried about that.  I got up early, too - for second string Rosie-duty while Jeff went to Penn.  He gave me many instructions for Rosie’s care and seemed a little worried whether I was up to the job.  Isn’t that cute? 

Well, poor little Rosie is sick and, in fact, I did have a little trouble giving her a bottle. She cried a lot, poor thing.  When she fell asleep, I placed her in her crib, as instructed by her mother, so she would be near the vaporizer.  Phew!  I thought, “It must be 11 o’clock by now!  That was hard work!”  I wanted to take notice of the time so I would know how long she napped.  It was 8:36 a.m.!  I’d been on duty for only about an hour!

While Rosie slept, I had a text from Jeff: “14.4 Hemoglobin.” 

I texted back, “What?!  That’s fantastic!”  That’s actually in the standard range!

“Rosie ok?”

I replied, “Rough time with the bottle.  Sleeping now.”

Jeff offered expert tips and asked how Rosie slept last night.

When I replied, I managed to get my phone’s keypad stuck on caps-lock: “T SAID COUGHING DID NOT DISTURB HER SLEEP.  SORRY for shouting.”

His text reply: “You should whisper if Rosie is sleeping.”

He texted a few more times from Dr. Porter’s office, once to get the name of the 5K race in Paramus where he’ll meet his donor - The Mel Cohen Memorial 5K for Gift of Life.  He said Dr. Porter wants pictures.  When he told Nurse Heather about the plans to meet Nicole, she said, “You always have a story that gives me goose bumps or makes me cry!  We don’t often hear such good news in this office.”

Dr. Porter gave Jeff the results of his last chimerism test:  still 100% Nicole’s blood cells!  The liver function tests that were done in July showed normal results.  Dr. Porter thinks that Jeff may always have to take immuno-suppressants but the dosage can be dropped back to three pills a day.  Yippee!  One fewer pill in the aresenal!  They discussed whether to drop an a.m. or p.m. pill to avoid the occasional nausea Jeff gets from the Mycophenolate.  

Dr. Porter and Nurse Heather both said Jeff looked great. Maybe that Bermuda tan was exactly the right shade!  Dr. Porter recommended a great hamburger joint at the Paramus Mall.  We’ll have to check that out when we’re there.  Jeff teased Dr. Porter, "You and your team made me live so long that I now need to make a new bucket list!"

Kirsten, our L&LS coordinator for our Light the Night event, also asked for pictures of the Gift of Life “meet.”  We may have to ask family members to take pictures for us in order to get some decent ones.  After all, we’ll be involved in hugging Nicole at the crucial photo op moment.

Sunday, September 15, 2013

A New Bucket List



We have just returned from a bucket list trip to Bermuda.  When we made our reservations, Jeff said, “We’re going to need a new bucket list!” 

At a lovely resort hotel, we tried – and failed – to take up residence on a chaise lounge.  We have never done vacation that way.  Besides, if Jeff sits, he sleeps, and he did not plan on sleeping his vacation away.  There was a lot to see and do and he was up for everything: a lighthouse, forts, beaches, ferry rides, restaurants, museums, gardens, snorkeling, cave tours, massage in a cave spa and – best of all – cave swimming which we enjoyed numerous times.  The cave entrance was conveniently located close to our room.

 Everyone was friendly and seemed genuinely happy to be there – locals and tourists alike.  Jeff ordered fish at every meal and said, “Theresa would be proud of me – no beef all week!”  The manager of the restaurant we visited most often, The Swizzle Inn, said we were their “fish ambassadors.”  The restaurant’s slogan is “Swizzle Inn, Swagger Out,” which I thought was “Stagger Out.”  We did neither but we did enjoy their signature drink, the Rum Swizzle.

On our last morning on the island, we woke up early enough to watch the sunrise.  Jeff took awesome pictures with our new point-and-shoot camera.   

The lawn needed to be mowed when we returned, of course, and the lawn mower was finicky.  Jeff had to work on it and coax it to start.  He remembered that the first lawn mower we bought 32 years ago lasted only five years or so and this is the second one we’ve ever had.  Again, I expressed my belief that it is time for a new mower but Jeff is not ready to concede to the mower and me.  Jeff also remembered that last summer he was not able to pull the cord to start the mower.  He might be taking too much pleasure in tinkering with it.

We're glad to be home to family but what a great trip!

Sunday, August 4, 2013

The Gift That Keeps on Giving


Last Sunday, spurred by Deacon Roy Reider’s sermon on prayer, Jeff and I discussed answers to prayers, particularly those that are answered - but not quite in the way you’d hoped or intended.  Jeff said he used to pray that he would become a good speaker and be able to address a large group of people on a topic he knew something about and that would be interesting to an audience.  He laughed and said he felt he could speak about his bone marrow transplant experience to an audience of any size.  He said this fell under the category, “Be careful what you pray for.”  Jeff has an opportunity to test this skill. 

Our plans to meet Jeff’s donor, Nicole, and her family over the Labor Day weekend have been foiled.  We were making plans to meet half way - a six-hour drive for Nicole and a six-hour drive for us - near Raleigh, NC, for a camping trip.  Nicole’s family are outdoorsy plus Jeff hasn’t been camping since his transplant and has decided he misses it.  The idea of the meeting taking place in a quiet campground was appealing. 

Nicole emailed to tell us that she and her husband are buying a house and settlement is August 29th.  She was very disappointed to postpone the meeting but we are, of course, very happy for her family.  We immediately began looking at dates in October.  We could not camp over the weekend of October 19th since we are committed to the Light the Night Walk but we were otherwise available.  Nicole would be traveling to Boston in October so she thought maybe a meeting could be arranged around that trip.

Our plans have been foiled again.  The meeting will not take place in Raleigh or Boston or Morrisville but in Paramus, NJ!

On Friday Jeff received a call from Barbie at Gift of Life.  Barbie asked Jeff if he would be willing to meet Nicole and, together with Nicole, lead the Mel Cohen Memorial 5K for Gift of Life on October 6th!  They would have an opportunity to say a few words and they are to exchange signed photos of each other.  Gift of Life will pay for Nicole to fly from Atlanta and stay in Paramus for two nights and for Jeff to stay one night so they can attend the event and then have an extra day to spend together.  Barbie had already spoken to Nicole who gave her a “yes!”

Jeff thought it was a 5K walk (no problem) only to realize that the event is probably a run and that Nicole will probably leave him in the dust.  He thought he could train in the next two months so that he could jog at least part of it.  On second thought, he decided that since he sometimes cannot feel his feet, running was probably not a great idea.  He plans to buy new sneakers – finding shoes that don’t hurt his neuropathetic feet is tricky – and then walking more regularly in preparation for the event.

We emailed Nicole and arranged a phone date and then emailed our kids to share the good news. On Saturday we waited for the prescribed time for Nicole’s call – I was a little giddy, Jeff more reserved.

Nicole’s enthusiasm was heartening.  It was exciting that Gift of Life’s invitation firmed up our meeting plans so nicely.  We wondered how they chose Jeff and Nicole for this honor.  Nicole said she’d asked Barbie that very question and was told it was her interest in running, possibly because she asked at the time of her donation, “When will I be able to run again?”  I wondered whether it was also because Jeff shares a diagnosis of MDS with Mel Cohen, the man honored by this event.  Mel Cohen was, evidently, a great guy who worked in social services for 30 years (how did he get MDS? I wonder).  Use the Gift of Life link at right to read more about Mel Cohen and this event.

We are a little concerned that our fundraising efforts for the Leukemia and Lymphoma Society may be diluted a bit because these two events are only two weeks apart.  We will rely on the generosity of our friends and family and see what we can do for each of these worthwhile organizations.

Prayers of thanksgiving for Gift of Life’s invitation to Nicole and Jeff and for the good work they do in matching patients and donors. 

Tuesday, July 30, 2013

The Light of Our Lives and Light the Night

Jeff spent his first full day with Rosie yesterday.  Jeff and Rosie both had morning and afternoon naps.  When Kerry got home at the end of his work day, he asked his dad whether it had been a long eight hours.  Jeff insisted it was not.  However, as he walked down their driveway to his car, he counted up the hours he’d spent with Rosie and figured it was more like 9 ½ hours.  Who’s counting?  Jeff was tired when he got home but full of stories about his successes giving a very reluctant Rosie her bottles, the songs he sang - “My whole repertoire,” and the blow-out poopy diaper.  We went for a walk after dinner in an attempt to energize ol’ Grandpop but it only slightly delayed his early bedtime.  Perhaps there would be dreams of Rosie, the light of our lives.

On Saturday, October 19th, we will be participating in the Leukemia & Lymphoma Society’s Light the Night Walk at Bucks County Community College.  We are hoping to have lots of friends and family join us to celebrate Jeff’s survival and to raise money for research that can make a difference in the lives of blood cancer patients like Jeff.  Click here or use the link on the sidebar to visit our team page, join our team or make a donation:



Wednesday, July 17, 2013

Mr. Frog Bites Off More Than He Can Chew

Today marks the one-year anniversary of my father’s passing and the day began with my sisters, brother and I passing thinking-of-you text messages.  Nancy’s message included thoughts about it being an “auspicious day” for Keith to head to Afghanistan. I read her message just before walking into my office. (Thanks for that, Nancy.)  A quick dash for the tissue box, a couple of hugs from my co-workers, and my workday began.

My cell phone chirped several more times – Judy, then Harry, then Tracy all texted short messages.  We were thinking of Pop, of the day he died, and the year’s events – Mother’s death six months after Pop’s, babies born, life lived.

In the midst of my siblings’ text messages came one short message from Jeff, “Mr. Frog is dead.”  Oh!  Too bad!  We’d enjoyed the bullfrog’s 4 a.m. concerts from our tiny little pond.  The smaller frog had already disappeared.  The frog, formerly known as Three-O’Clock, had grown quite large this summer.  We joked that he grew by the approximate size of the smaller frog, “Maybe he ate it.” 

My work was interrupted once again when Keith called.  He was not yet on an airplane and it sounded like he had a loooong trip ahead of him – commercial flight to Kazakhstan, then military flight to Afghanistan.  He’d been awake since 7 a.m. yesterday.  Poor guy.

No sooner had I returned to my desk when Jeff called.  He’d missed Keith’s call because his cell phone was in the truck for the couple of hours he was working.  Jeff also reported on the means by which the bullfrog died.  Spying a dead bird in the pond (this seems to be happening a little more frequently this summer than most), he grabbed the pooper-scooper to retrieve the carcass.  As he lifted the bird out of the water, the frog came, too!  Evidently, the frog tried unsuccessfully to swallow the bird.  Jeff tried to yank the little wretch out of the frog’s mouth in the hopes that the frog could be revived but it was too late.  Both creatures succumbed from the trauma.

As I hung up the phone, I reminded Jeff that we had Chicken Lessons with Emily when I got home from work.  We are finally reciprocating for all the dog-sitting Emily has done for us.  We would be taking care of her three chickens which lay three different colored eggs.  We’ll be paid in eggs.

Despite the heat and humidity, we decided to walk the three blocks to Emily’s house.  Emily took us out to the coop and pointed to two of her birds and commented, “Hmm.   Where is the other one?”  She opened the hutch door and made the sad discovery.  I took baby Lincoln off her hands while she dealt with the remains.  She is a stoic, pragmatic animal lover yet we felt sorry for her loss.  We discussed methods of keeping the hutch cool during the heat wave, got our instructions for feed and water and closing them in at night.  We enjoyed a short visit before heading home.

On Friday, Jeff went to the Perelman Center.  Nurse Heather thought he looked good.

“I know,” he said.  “People can’t see what I’ve been through.  It was more fun when I looked like I was dying.”

Heather laughed.  Jeff told her he was going to meet his donor and that his donor makes him think about why bad things happen to good people.  He related Nicole and Nicholas’s story.  Heather cried.  She asked if she could share their story with her mother who doesn’t understand why babies get cancer. 

Dr. Porter decided Jeff didn’t need labs drawn.  Then he changed his mind.  I was relieved to check those liver function numbers since they were improved a month ago but not back to where they had been before GVHD.  Although his numbers are better now, Dr. Porter said Jeff would have to stay on the current dosage of Cellcept for another six months before he would consider tapering. 

Our little Rosie was baptized on Sunday.  A party at Kerry and Theresa’s followed.  It was lovely – and hot.  Jeff and some of the young men played horseshoes.  Last summer Jeff could not play quoits (a 21-foot throw) and this summer he can play horseshoes (40-foot throws).  The next day Jeff’s arms were a little bit sore – that’s all.

We are thankful that Jeff is doing well and we are praying for safe travels for Keith and all those serving our country.    

Sunday, June 16, 2013

Big Candy, Big Britches


Jeff believes that his candy dish is getting bigger.  He is, of course, referring to the analogy of the candy dish as the fixed amount of energy he is given each day that can be consumed all at once or doled out carefully over the course of the day.  In fact, most days he seems to be able to accomplish more and last longer. 

Last night he proudly suggested that we list all the things he fixed or made in the last couple of days:  the dryer, the gates in our yard that weren’t closing very well, the pond pump and, grandest of all, he made a very regal throne for Vacation Bible School (a whole-day project – and can you believe we forgot to take a picture of it before we delivered it to church this morning?).

Of course, all these projects at home are in addition to the nearly full-time work he is doing, most recently kitchen renovations at Judy and Mark’s house - with some help from the homeowners.

And last weekend we even went out to see a show at Langhorne Players.  And Jeff managed to stay awake for the whole show. 

All this increased activity has resulted in just enough weight loss for Jeff’s britches to be a little droopy, extra roomy.  Now I can say, “I told you so.”  It wasn’t too long ago that he decided his old body had fully returned and his post-transplant skinny wardrobe could be donated.  I advised holding onto the few things we had bought for him but he saw no reason to do that. 

When Friday’s lab results were posted online, I looked at them and used the graphing function on Penn’s website to compare the results with those from before this round of GVHD.  I told Jeff, “In my unprofessional opinion, it looks as if your blood counts are pretty good and your liver function is improved but not back to where it had been.  I suspect they’ll keep you at this dose of Cellcept awhile longer.  Don’t expect a phone call from Dr. Porter’s office with any new instructions.” 

Jeff agreed, “Well, my next appointment is in about a month.  We’ll see then.”

We had a very nice Father’s Day cook-out here today with our little Rosie and her parents.  Life is good.   

Please pray for continued improvement of Jeff’s liver and also for a young father, Andy, a neighbor of a church friend, who is at Day 0 plus 9.  His two young children did not have their daddy at home this Father’s Day.