Tuesday, December 29, 2009


We had a mega-gift exchange yesterday!

It was post-Chanukah. It was post-Christmas. It has been like holding your breath while the world celebrates its various winter holidays.

We were waiting for Adam and Laura to arrive.

We picked them up at the airport yesterday and brought them home to the mountain of gifts heaped on the coffee table in the living room.

What we did in the the order we did it in:
1. "Oohed" and "ahhhed" over Laura's engagement ring.
2. Took their suitcases up to their room.
3. Opened presents. And then opened more presents.
4. Toasted the engagement with champagne.
5. Drank eggnog.
6. Stayed up late and talked. And then talked some more.

Today we all went to the Richard Avedon exhibit at the Detroit Institute of Arts.

Afterwards, the kids drove to Ann Arbor for dinner and a movie. (It's gorgeous in downtown Ann Arbor with the twinkly lights on Main Street but a bit cold -- in the teens -- to do too much outdoor wandering and window shopping.)

Tomorrow we're going to look at wedding venues in Ann Arbor in case the kids choose to get married here in Michigan. They will also be looking for places to get married in LA when they get back.

Marika and Evan are driving to Chicago tomorrow or Wednesday to ring in the new year with a friend of Evan's from Stanford days of yore.

Fashion photographs.
Avedon had a talent
For capturing Dior style!

Friday, December 25, 2009

Fifteenth Day of Chanukah

For most of you, it's Christmas morning as you wake up today. Merry Christmas!

For us, we've continued the "miracle" of the lamp oil that lasted eight days and, pushing the envelope a bit, celebrated the fifteenth (!) day of Chanukah last night with a dinner of latkes and homemade applesauce. (We had waited until Marika and Evan and my mom and brother had all arrived before we made the biggest, greasiest mess that can ever befall a kitchen.)

Gil had another appointment at Karmanos yesterday morning. He got the final results of the bone marrow biopsy taken over a week ago and (your prayers have been working!) the news is very good. He is 100% his sister's cells (thank you again, Genie) and there is no evidence of any remaining cancer cells or ugly mutations in the DNA of the remaining stem cells.

He isn't cured but he is headed for a cure and he is certainly considered in remission from his cancer at this time.

He asked his doctor how effective the yellow masks are at protecting him from the general population when he's out in public because he doesn't want to assume any false assurances that he's protected.

His doctor smiled and said, "The masks provide "cosmetic protection". That is, when people see that you're wearing a yellow mask, they tend to keep their distance from you, and therein lies the greatest protective factor!"

He's still dealing with a bit of graft vs. host disease but it's being treated appropriately and is a "minor burr under the saddle" in Marika's equestrian terminology.

He's on Day 79 post-transplant and he's feeling good. He's gotten permission from his physicians to start working out at the gym which he's eager to begin once the holiday is over.


Family gathered
Sleeping in this cold morning.
Enjoying their dreams.

Monday, December 21, 2009

The Proposal

Great news for us this season!

Adam has asked Laura Fahey (his beloved) to marry him. We are thrilled because we've loved Laura -- and her whole family -- since the first time we met them. What I like most about Adam and Laura's relationship is that they bring out the best in each other. Together they make more than the whole. And they're fun to be around.

Marika and I have had a wonderful week together since she's been home. She's at the airport now as I type this picking up Evan whose flight from LA is arriving momentarily.

Evan was in LA last night and had been clued in to Adam's plan to propose to Laura. Evan was "on call" to come with champagne, roses and his camera to capture the moment.

Adam and Laura head to Boston to show all of Laura's relatives her new jewel. They will swing by Michigan for a few more days before heading back to LA.

Gil is feeling okay but not great. It's probably a little bit of graft vs. host disease rearing its ugly head again. Our appointments during these next few holiday weeks are off schedule and we go in this week on Thursday, Christmas Eve. There will probably be some medication adjustments based on lab values and telltale signs of the the graft vs. host symptoms.

We feel lucky to be on Day 75 on our countdown to Day 100 when we will have arrived at the time when the "acute" graft vs. host symptoms and risks will change to "late" or "chronic" graft vs. host symptoms. The "chronic" symptoms, we are told, are more inflammation-based. We're not there yet.


The kids get engaged
When is it that easy
To commit to love?

Friday, December 18, 2009

Holiday Cards are in the Mail

The holiday cards have been sent! Yours should be arriving within the week.

If I've inadvertently left you off the list (sorry), or yours got lost in the mail (egads), or if you want me to send you one because you didn't get one and you want one and I probably don't know your address, let me know where to send it and I'll put one in the mail to you. (karen.raff@gmail.com)

The photo of our family on the front of the card was taken when we were all together at Thanksgiving courtesy of Marika's dear friend, Lindey Sibel. (Thank you, Lindey. Good work!)

You won't believe it but I sent out over 400 cards this year. There are so many of you who have sent your "good wishes" over the year and we wanted to thank you all.

Marika arrived home from Santa Barbara last week. We've been inseparable. Gil has had two appointments down at Karmanos since Marika got home and she's come with us both times. Today he had a bone marrow biopsy and Gil allowed her to observe the procedure.

Evan gets home on Monday night. My mom and brother arrive on Wednesday. Adam and Laura arrive on December 28th after their visit to Boston with Laura's family. So we'll all be together again.

Gil has been cleared to "go back to work" in a limited way starting tomorrow. He will read cardiac CT studies from home this weekend. He's not allowed to work "in the hospital" yet due to the high risk of infection. When all of this leukemia business started back in June, he set a target date when he "hoped" to return to work as the end of the year. And it looks as if he has been lucky enough to meet that target. We're grateful.

We've been wrapping and sending presents to family and friends this past week. And we're having so much fun doing it. Giving feels great!


Marika is home
We're loving having her here
She makes our hearts glad.

Sunday, December 13, 2009

Genie's Cells Take Over

On the day this photo was taken, we were walking along the Milford Bike Trail and stopped along side the Milford Dam which was once used to generate electricity for a portion of our small town.

We've made it to Post Transplant Day #67.

We got good news at our clinic visit last Friday. Genie's stem cells are now evident in 100% of Gil's peripheral stem cells. This is a more accurate test than the earlier peripheral estimates where it was shown that 100% of Gil's myeloid line and 77% of his lymphoid line were being produced by Genie's stem cells .

The test results we got on Friday were also from a peripheral blood sample but measure the percentage of cells containing either XX or XY chromosomes. All of Gil's stem cells now have the XX chromosome in their DNA which is evidence that they are Genie's "girly girl" cells. This is very good news.

There were no cancerous (leukemic) cells seen in the peripheral blood sample this time whereas they had been seen in small amounts in past samples. This does not mean that there are no leukemic cells remaining. It simply means they might not be in high enough concentrations in the peripheral blood to be picked up for measurement.

And we want to know if they're still there in any small but measurable amount at all.

So the next step is for our Karmanos team to look at the bone marrow itself. Gil is scheduled for another bone marrow biopsy on Friday this week to see if there are any leukemic cells in the bone marrow that simply hadn't had time to make their way out into the peripheral bloodstream yet.

He's feeling good. Lots of energy. A small bit of graft vs. host disease as evidenced by a mild skin rash on his thorax but it is being treated and as we've said before, it is a "good" rash because it means Genie's cells are recognizing Gil's few remaining cells as "foreign."

It's icy out today so we will head to the indoor "controlled climate" of the mall and walk with the "mall walkers" before the doors open to the public.

The main threat now to Gil's continued successful recovery is opportunistic infection and pneumocystis pneumonia is one of the big ones we need to avoid.

Marika flies in from California tonight and we can't wait!


Heading to the mall
Not to shop but to walk.
Retail stores need more buyers!

Thursday, December 10, 2009

Wednesday Lunch Bunch

Yesterday was our regular Wednesday lunch date with our two transplant unit friends. Bonnie had us all to her home in Lansing for the afternoon -- hearty homemade vegetable soup, bread and fruit salad. What a treat!

All the "patients" reported doing well and I felt left out! I was the only one there who hadn't gotten a bone marrow stem cell transplant!

Blustering snow on the drive home but that's what winter in Michigan is all about.

Went back to my Pilates studio last night for the first time since Gil was diagnosed with leukemia. It had been six months!

My arms and calves will be sore, but what a delightful soreness it will be.


Putting off workouts
Never a good idea.
First time back is a killer.

Wednesday, December 9, 2009

Clinic Days

This is the waiting area for the Bone Marrow Clinic outpatients. We're lucky that we've graduated for the time being to once-a-week appointments. Our next one is this coming Friday.

The wall above the clinic entryway is filled with recognition plaques for the generous donors who have made all this possible -- bringing together the experts in their fields so that the transplant recipients can get their cutting edge care in one convenient place.

In early December both of our "transplant" friends who I've mentioned before were released from their "one-hour's-driving-distance" restriction to go home where they can enjoy the rest of their recovery and reenter their normal lives and routines. Today we're headed to Lansing (where one of these friends lives) for another of our weekly Wednesday lunches.

Gil is feeling human again and is working daily from home on all matters of importance. We're grateful he has the energy and clarity of mind to contribute to ongoing research projects at Beaumont and administrative concerns when he can add something positive to the discussion.

Marika completed her first final exam early this week (dreaded physics) and has a few more to go on Saturday.

I sent her the following helpful hint prior to her physics final:

"Magnetism, as you recall from physics class, is a powerful force that causes certain items to be attracted to refrigerators." -- Dave Barry

She leaves Santa Barbara for Winter Break and drives to LA to celebrate Adam's birthday (he'll be 27) and fly home to Michigan the following day (December 11).

Evan gets home on December 22nd and will be here for a week.

Adam and Laura will head to Boston (Laura's home town) for the actual days before and after Christmas and then come to Michigan to join the rest of our family on December 28th.

My mom and brother are driving up from Louisville, Kentucky for the three days at Christmas so we will have a cheerfully full house.

In the meantime, getting ready to celebrate Chanukah on December 12th and buy the latke ingredients for our traditional spread!


Winter cold set in
Snow appeared overnight
Melting as I type this.

Friday, December 4, 2009

Marika and the Vanilla Cupcake

This is a story about Marika's room.

Over the summer, Marika and I had reminisced about her days of riding horses competitively and how much she missed that time with her friends at the barn and the regional/national horse shows. We talked about her hours of dedication to her horsemanship that are now put on the back burner as she pursues her pre-med coursework at college.

She wondered if we couldn't resurrect and frame some of the photos that had been taken at the shows and put them up in her room as a reminder of some of the very "good times" she remembers.

We left it at that. Just "thoughts" and "wishes" that she could be surrounded by some of the really memorable photos of the horses (Oz and Baily) that took her to winning rides.

Enter "Marika's Mom" and her "need to do something creative!"

While Marika was at school this quarter, I called the professional photographer who had been the designated show photographer and had 16"x20" prints made of two great images. I had them framed (Yikes! Expensive!) and began "decorating" the room around them.

Marika had chosen a bright and cheery quilt over the summer in the rich blues you see in the photo above.

I added bedside tables and lamps and pillows from IKEA. Our indispensable handyman painted the wall the bright blue color you see (and love).

Then I went about getting the perfect candles and smaller decorative elements for the rest of the room. (Only thing I couldn't afford on my budget was a flat screen TV for the room!)

I surprised Marika when she arrived home for Thanksgiving the first night by telling her in a calm and casual way, "Go ahead and put your suitcase up in your room and come back down to tell us about your flight and school."

She went upstairs expecting her "old" room and was greeted by her "new" room. There were gasps of delight and surprise and a few joyful tears.

"Mom, I can't believe you did all of this for me!" she said.

After a few days of being here and getting used to the "newness", I asked her what she liked best about the new room makeover.

"My room smells like a vanilla cupcake every time I walk into it!" she said, commenting on the soy candle wafting away in the corner 24/7.

(And that's not such a good thing, we both agreed. Marika and I added pounds during our summer vigil in Gil's hospital room -- what else do you do but eat and go to Starbucks downstairs in the hospital cafeteria when you're a visitor all day every day -- and we don't need anything else that smells like a vanilla cupcake!)

I think we'll change out the soy candle to the pine scent of a winter forest!!

P.S. Marika gets home for her two weeks of Winter Break a week from tomorrow. The countdown of 10 days begins today.


Girl coming home soon
Her Dad's favorite daughter
Her Mom's pride and joy.

Tuesday, December 1, 2009

The French Laundry ... Again!

Although the kids have all gone back to California, this photo needed to be shared. Obviously we were all out to breakfast at The French Laundry. It's one of the few times Gil has ventured out in public and we cherished the morning together.

(Remember it's the first 100 days that are critical in the recovery process.)

Yesterday was Day 55 for Gil post-transplant. We were at the clinic yesterday morning and he was showing signs of beginning GVHD (graft versus host disease) so the team began aggressive treatment with steroids to get it under control. Realize, please, that we want a certain degree of GVHD which means that Genie's cells are doing their job in fighting Gil's remaining tumor cells.

I've often described the GVHD process as a war-like situation. There are skirmishes from each of the stem cell "camps" -- border-fights if you will -- when Genie's camp of stem cells crosses the divide and provokes Gil's camp of remaining stem cells that don't want to admit defeat yet.

After being attacked, Gil's cells rally themselves to mount a counter-attack. And on it goes. One skirmish after another. Sometimes it's an overt skirmish, with outward signs, and sometimes it's covert and we don't know it's going on.

The battles will continue until Gil is declared "leukemia-free." We're not there yet.

While the kids were here, they gave me a book of Haiku poems. I've learned that the 5-7-5 pattern of syllables in not absolute. Here is one I've recently discovered and wanted to share:


the packet of seeds,
asking, are you still alive?

Kiyoko Kotukomi