It's All in the Details

So as we all know, things do not always go as planned (understatement of the century!), and indeed, plans have changed rather suddenly with regard to the timing of John's stem cell transplant. Wednesday we learned that though John's stem cell collection went exceedingly well last week, his kidneys had an adverse reaction to the mobilization drug that he was given over a 5-day period. As the doctor explained, this could be an indicator of how John's kidneys will react to the very extreme "conditioning" chemo regimen that normally precedes the actual stem cell transplant. That "conditioning" regimen consists of two days of ultra high doses of a very powerful chemotherapy drug that conditions the bone marrow to accept the stem cells back into the body. But the drugs are also exceptionally hard on the body, even under the best of circumstances. The fear is that John's kidneys are in such a delicate state it would place undue, and perhaps significant, stress on them. Thus it was decided that it would be prudent to postpone the transplant for some period of time to give his kidneys time to recover from the stem cell collection process.

During this hiatus, John will get a lower-dose of chemo, taken orally, which is very effective at reducing the amyloid production in the bone marrow, but safer for the kidneys. In other words, this is a good Plan B option that provides much less risk than transplant at this time. John will be under the supervision of the Mayo-trained amyloid doctor in L.A., who works closely with Dr. Gertz here in Rochester.

We will meet once again with the transplant team at the end of next week to discuss tentative schedule for our return trip to Rochester to perform the stem cell transplant. Though this was an unexpected bump in the road in terms of timing, we feel lucky that the medical team saw this possible complication prior to transplant rather than after. This is why Mayo Clinic is the gold standard of the medical field; their attention to detail and compassionate guidance for their patients is unparalleled. We know that staying flexible with regard to possible treatment options is a must, because as with all complicated medical conditions, the process is highly fluid and changes almost daily.

We'll know more next week, but for now we are looking forward to being home soon! And of course we are looking forward to being back in Rochester in the not-too-distant future. Thanks to everyone for your cards, letters and good wishes throughout our Rochester adventure. As always, we'll keep you posted!

A Big Week

Late Friday we got John's schedule for this week and we are zooming forward! Each day we are one day closer to our goal. Tuesday we have a day of further consultation with the lead doctor of John's medical team, Dr. Gertz, who is Chair of the Department of Internal Medicine at Mayo Clinic here in Rochester. He is considered to be the leading Amyloidosis expert in the world and is directing every detail of John's treatment. We will have more information on Tuesday, but we do know that John will undergo Step Three of the stem cell transplant process, known as conditioning, on Wednesday and Thursday. Friday, Dec. 9 will be the day we've been waiting for: the day of the actual stem cell transplant. More on conditioning and photos from the transplant floor at Mayo to come! (Illustration/Google Images)

The Miracle (Apheresis) Machine

John completed the second phase of the stem cell transplant process today - ahead of schedule and above his target number of 4 million! In just two days, they collected 5.48 million stem cells using the incredible device that you see here. It's a relatively small machine, but wow, does it perform huge miracles.

The technical term for stem cell harvesting is apheresis. Apheresis involves separating the blood into its various components, including stem cells, and is accomplished through a device called a blood cell separator. The more one knows about this machine, the more one marvels at what technology can accomplish. The device, which costs about $200,000 (hmmm, wonder if that's the wholesale or retail price...), uses a centrifuge that isolates the various types of blood cells by weight and size. It utilizes an optic scanner and literally skims the stem cells off the top layer of blood in the reservoir, sending it to a bag attached outside the machine. The stem cells in the bag are then infused with a preservative and sent to huge vaults here at Mayo, where they are deep frozen at approximately minus 312 degrees Fahrenheit until they are thawed for use on the actual day of transplant. The other blood components flow through the machine and back into the patient, so only a small percentage leaves the body during collection. Each collection day, John was hooked up to the machine for about five hours, so we were both thrilled that the harvesting went smoothly and ahead of schedule. Though not painful, it was a grueling few days and John is glad it's over.

The nursing staff here is so expert and so compassionate - they make even the most challenging procedures so much more bearable. These total strangers become friends after a few hours, and almost every one will say to us upon leaving any given procedure, "John, Bennie, please come back when you are through with the transplant and let us know how you are." And you know what? They actually mean it.

Next week is a huge week for us, as John begins the next phase in the stem cell transplant process. It's called "conditioning" and will entail mega doses of chemotherapy. More on that phase soon, but for now we are celebrating his success of the last few days. We embrace these daily victories, no matter how big or small - they remind us that each day is special.

Sweet 16!

Major progress on two fronts today.

First, a long-term, high-flow central venous catheter (or central line) was threaded through his internal jugular vein to the subclavian vein during surgery this morning. The goal is to get this procedure completed roughly 24 hours prior to the beginning of harvesting, if possible. This device will stay in place until he is released by Mayo, and is used to remove the stem cells and also to inject the "conditioning" drugs in a week or so (chemo).

Second, as you know, John has undergone twice daily shots for four days in order to bring his stem cell count up in preparation for the second phase of bone marrow transplant, which is the collection (or harvesting) phase. The minimum level pCD34 (stem cell) count needed to be 10 before he could get clearance to begin tomorrow. Today we learned that his count is 16! The doctors were more than happy, as this means John is responding well to treatment thus far. We are hoping that the collection phase is one to two days max - the fewer the number of collection days the better, as the process is not only tedious but places significant demands on the various organ systems in the body, especially the kidneys. We'll tell you more about that amazing process soon! (Photo/Muppets/Google Images)

Quite a Team!

The bone marrow transplant team is standing at the ready, prepared to start the stem cell collection process Tuesday morning if all goes as planned. As you can see, they are quite a bunch! They have every detail planned to the second and we are not kidding...it's quite impressive. We've said it before and we'll say it again, they are as smart and kind a group as you could possibly want - we know we are in the best of hands! (Photo/Google Images)

Stuff You Always Wanted To Know About Stem Cells...

...but were afraid to ask!

First of all, they are not blue! I picked this illustration because I thought the actual photos of stem cells were not, shall we say, as picturesque! In fact, unless you are a doctor, marine biologist, or transplant patient, most people could do without seeing what they actually look like! Anyway, they are truly amazing in many ways. Here are a few facts that pertain to John's blood disorder and course of treatment.

All blood cells develop from blood stem cells in the bone marrow. These stem cells are what are called progenitor cells, and they produce the three types of blood cells in your body: red blood cells that carry oxygen, white blood cells that fight infection, and platelets that allow blood to clot. The idea behind a blood and marrow transplant is to wipe out the dysfunctional, diseased bone marrow that is producing rogue cells that are toxic to John's body, and replace it with stem cells collected from John's own blood so that he can produce new bone marrow that produces normal blood cells once again.

Step One in the transplant process is to inject the patient with a growth agent that stimulates mega-production of stem cells. This is called "mobilization," and the patient is injected twice daily for three days. Stem cells normally stay in the bone marrow, but this drug therapy produces so many stem cells that they leave the marrow and enter the blood stream. Once the stem cell numbers are up to a certain level in the blood stream, Step Two, or "collection," will begin.

Today, John began the mobilization phase, and if all goes as planned, collection will begin on Tuesday morning. More on the collection phase soon for those who are interested in the medical details, but for now we wanted everyone to know that John is thus far tolerating this phase well. Thanks to everyone for writing and keeping our spirits up...we know we have a huge team of family, friends, and doctors encouraging John daily and we couldn't do it without you. (Illustration/Google Images)

Happy Thanksgiving!

We had a wonderful Thanksgiving feast here at the Transplant House - six turkeys and assorted fixings, all donated by the locals here and absolutely delicious! We were spoiled rotten and continue to be so touched by the warmth and generosity shown to us by the people of Rochester. Our living room is so warm and inviting and we had it all to ourselves this evening. What's missing? Emmylou, Latifa, Sherman, Cleo, and J.D. - and all of you!

The Blue Meanies Approve!

Well, try as they might to rain on our parade by delaying treatment, the Blue Meanies at Blue Cross today did give final approval for John's transplant! It only took them a week! They were probably pretty busy with other stuff, like exchanging stuffing recipes. Anyway, we start the process on Friday - medical details will be coming soon for those of you who want to know more about the process.

Off to take a walk in the 'hood! It's a balmy 43 degrees and we want to take advantage of the warm weather!

(Photo/Google Images)

A Hot Chocolate Kind of Day

Here are some shots of one of the lounge areas in the Gonda Building at Mayo Clinic. It's quite a spectacular place from an architectural standpoint, not to mention the art collection housed throughout. That's a Rodin in the background doorway, and the Andy Warhol series is one of several we've seen in this building alone.

Today we hung out at Barnes & Noble, ate lunch at our favorite restaurant, drank some hot chocolate (male spokesmodel for hot chocolate pictured here), and caught up on work. Oh, and just for good measure, we cursed Blue Cross a couple of times, too! You guessed it. We still have not heard from good ol' BC, but maybe tomorrow will be our lucky day....

Fish, Anyone?

There are many animals native to this area that are fun to read about, one of them being the North American River Otter. These creatures were plentiful in the region at the time of European settlement. Habitat loss, pollution, and unregulated hunting severely reduced their numbers, but they have made a comeback and are now seen regularly in many areas of the Upper Mississippi River. They have even been sighted in the river in downtown Minneapolis!

Otters can be distinguished from beaver by their large, furred tail. They do not build their own burrows, and in fact often use those that have been abandoned by muskrats or woodchucks; they are also known to take over abandoned beaver dens. Otters are curious and like to play with rocks and shells; I read one blog wherein someone reported seeing one "sliding" down a steep part of the river bank! Anyone who has seen otters in the Pacific Ocean off of the Monterey National Marine Sanctuary can attest to their sense of play! They are always up for food and a good time!

The Friends of the Upper Mississippi River Refuges and Upper Mississippi River National Wildlife & Fish Refuge are but two of many organizations working to protect the wildlife in the area. These photos were taken from their websites.

The Rochester Winter Golf Classic

John would never let a little snow stop him from golfing! This is a good shot of him trying to get down the "green" this morning. He says the down parka does inhibit his backswing a bit, but he'll make the necessary adjustments!

Attention Walmart Shoppers!

Yes, we admit it, heading to Walmart was our big adventure today! This cute miniature horse was the official greeter and his name is Chub. His family owns 3 of them, along with 4 dogs, 3 cats and various chickens, so he has lots of company. He loves people, and as you can see, decided to give John a shoe shine! His family got him from a miniature horse rescue, and they spoil him rotten!

Hurry Up and Wait!

John finished his last evaluation tests on Monday and was given final clearance to proceed by his transplant team! This was great news! The request for treatment has been given to the wonderful folks at Blue Cross as of yesterday. Now we wait for final approval from them. Ah, just hearing the words "Blue Cross" brings your blood pressure down, doesn't it? Think lying on a tropical beach with the trade winds blowing - a book in one hand, a mai tai in the other.

As we all know, Blue Cross employees are kind and compassionate. They're highly motivated. They go above and beyond. They enjoy helping others. Sometimes they actually work. OK, so we're a little cynical! We're keeping our fingers (and toes) crossed that perhaps we might hear from them prior to the five-working-days Blue Cross claim processing guideline. Stay tuned, dear reader! You'll be the first to know! In the meantime, we'll dream of a tropical beach....

Monkey Business

Having lived in Rochester for only four days now, we can truly say that life is very different. We've had to make adjustments in both our living and work styles, and honestly, it's been transformational. Here is a shot of my work office here in our room - it's a little cluttered, but the chair is comfortable. I am pictured discussing Microsoft Word computer settings for our freelancers with my Art Director Alan Huber on Friday, as we have been having trouble importing some of their Word copy into our graphic design program. All I can say is, thank goodness for technology! And thanks, Alan, for sorting it all out!

All kidding aside, I want to mention the fantastic editorial and production staff at my home base of Source Interlink Media in El Segundo, without whom I could not be here. I call them my podmates and fellow hostages, but they are my extended family and have nurtured and supported us from the beginning of our journey. So Christian, John, Greg, Alan, Mark, Craig, Courtney, Sean, Ken, Pete and Camille, I thank you every day for your help and friendship. I have a great Executive Publisher, Steve, and there are many others who are pitching in, but there is one in particular who almost singlehandedly made it possible for me to work here. I would not be able to sleep at night if it weren't for her efforts. To the best boss ever, Amy, a thousand thanks.

Last, but by no means least, special thanks to Angel, who encouraged me to write this blog and who designed the banner for us. He is a special friend, sensei, and the Renaissance man of digital design!

Well, better get back to my pod to read about JKs, Raptors, and the new diesel S-10. Jealous?!

Second Street

Second Street

Our new home is an amazing place in every way. We love it a lot, and after only a few days it feels very comfortable and almost like home. The only things missing are our family, friends, dogs and cats, but you are all in our thoughts daily.

The Gift of Life Transplant House is a gorgeous and very charming Georgian colonial with mahogany, walnut, oak, and white maple woods throughout. It has two beautiful fireplaces, a solarium, library, workout room and multiple day rooms. Built in 1911 for the family of Dr. E. Starr Judd, who was the first surgical partner of the Mayo brothers, it is owned and operated by the non-profit organization Gift of Life, Inc. Gift of Life was started by Edward Pompeian, a kidney transplant patient himself who understood first-hand the needs of tranplant patients and their families. What a man! We are so incredibly lucky to be here, as the number of rooms is very limited. For any of you who would like to know more about this amazing organization, visit www.gift-of-life.org.

For those of you who wanted our address, here it is:

Gift of Life Transplant House
705 Second Street Southwest #3
Rochester, MN 55902

Thanks again to everyone for staying in touch!

The Eagle Has Landed

Greetings from the Windy City!

The first leg of our journey is behind us!! We resisted temptation and did not stop at the below waystation! Awaiting our flight to Rochester and sending best to all!

Ready for Blast Off!

With the love and encouragement of so many friends and family members, we are ready to embark on our adventure. Life is pretty ho hum in Los Angeles, and we are looking forward to a wild ride in Rochester! We'd like to express our deepest thanks to all of our friends for their kindness and support, and to our family for the absolute best out-of-this-world love. We are so lucky. Next stop Rochester—and the formal introduction to the Second Street Diaries! (Illustration by Getty Images)

He Knows We're Leaving Soon!

That's right, you can't put anything past my pal J.D. He seems to sense that things are amiss and attentively stares at me every time I sit at my desk. OK, actually he mostly reclines on his couch and stares, as evidenced by this "action shot." Cleo and Sherman? The only time they sit attentively and stare at me is when food is in the vicinity. According to them, there is never enough food in one day. Food + sleep = perfection. Who could argue with that?!