"Little By Little, We Travel Far" - J.R.R. Tolkien

Greetings! For those of you who have not heard, John had his stem cell transplant on Sept. 13 at Mayo Clinic in Rochester, Minnesota. The procedure consisted of two consecutive days of the chemo drug Melphalan, followed by a rest day, followed by the actual transplant. Let me clarify that though it is called a transplant, in John's case the stem cells came from his own body, not a donor's. This is a good thing, as he won't have to take the anti-rejection drugs that he would have if he had not been able to use his own cells.

Here's how it goes.

The transplant team escorts you into a private room via double-door entry; this room is for transplant patients only and each room has a separate, state-of-the-art hepa filter air purification system to reduce moisture and airborne pathogens.The team calls over to the Mayo Cellular Lab (2 blocks away) to order your stem cells, which have been previously processed and frozen (in John's case, back in December). After about 15 minutes, the bags of frozen cells are hand-delivered by a special technician who is responsible for defrosting them and transferring the bags one by one to the nurse team in the room. Our guy was Steve, a PhD in chemistry/biology who was one incredibly smart dude. Steve, however, never enters the room. He sits outside the room at a special monitor that is attached to the defrosting unit, watching through a double set of windows for the signal from the nurse that another bag is needed.

This is a highly choreographed process. In John's case, there were five bags. These arrive in a cooler much like you would take to the beach for a picnic. Your name and other specific information appears on the labels on each bag, and this info is double-checked against their central data bank to verify everything. The bags are relatively small, and as each one is emptied, a new one is passed in. The actual infusion of the stem cells directly into your heart through a central port takes about an hour or so. After infusion in complete, you are free to go, as this is all done on an outpatient basis.

Piece of cake, right? Well, you all know it took 10 long months to get to this point, so that was no easy thing! And there was a last-minute glitch on the day of transplant that almost took us off the schedule yet again, but in the end only delayed us from our scheduled start time of 1 p.m. to 6 p.m. Did we care? No! We were just so glad to finally reach our goal. 

The complex process that then begins is amazing. The chemo basically kills all the blood cells in your bone marrow, but now regeneration takes place, ever so slowly. The stem cells which have been infused take a few days to find their way from the bloodstream to the bone marrow. Once in the bone marrow, they begin to create brand new blood cells, differentiating into the various types of blood cells that are needed by the body. The white blood cell count (WBC) comes back first, and the most critical of the white blood cells for repair are the neutrophils. Post transplant the WBC count goes down to .1. Transplant day is known as Day Zero, and at Day 11, John's neutrophils began to regenerate to the point of being measureable. They continue to increase every day. If you have a .5 increase for three days in a row, you are said to have achieved "engraftment." That is the term for the stem cells settling into the bone marrow and creating new cells. It means you are on the path to recovery, yet full recovery of the various types of blood cells, both white and red, takes about a year. That John achieved engraftment on Day 11, basically right on schedule, was the best news we could have heard and the doctors were very happy. We have hiked to base camp, but we still have Mt. Everest to climb.

Post transplant, even though John is rebuilding his blood from the ground up, he has no immune system and must wear a mask at all times except when he is in our room here at the Transplant House. Since his blood cells will be new, he no longer has any immunity to the diseases he has been exposed to during his life, thus when we come back for the one-year checkup, he will be immunized for all major diseases at once. They do not want to do that prior to one year, as the blood cells are not fully mature until that time. 

Currently John is dealing with the very significant issues following chemo, which I will not go into here. His very low blood pressure is a constant challenge to the medical team, but he is being monitored very closely and hopefully he will be feeling better soon.

Well, friends, sorry for the extra long entry. Days are long and very busy and it is hard to find time to blog. As a side note, anyone wishing to see various photos of our transplant day can email me and I will gladly share.

We think of you all often and thank you for the cards, emails and phone calls. As we have said before, we are forever grateful for the love we share with our friends and family. And as for the incredible Mayo Clinic and Gift of Life Transplant House, there are no words to express our gratitude. More on the amazing people here at a later date!

Bye for now!

"The Only Way Around Is Through" - Robert Frost

We have negotiated several twists and turns, but finally we have a new date for John's stem cell transplant - September 12. In the jargon of the transplant world here at Mayo, this will be his new "birthday." He will undergo final tests next week, then will have two days of intense chemo, followed by the infusion of the stem cells that John harvested last fall and which were frozen during this wait period. The transplant itself will take about 12 hours and is done through a temporary port which is placed in his chest. The amazing thing is that this is all done on an outpatient basis, meaning that we will be able to rest and recuperate here at Transplant House until his white blood count builds back up and his immune system is functional again. We will visit the clinic daily for check-ups, as each blood cell component is measured and monitored for progress. Though it is not uncommon for patients to spend some time in the hospital with complications, the hope is to keep hospitalization to a minimum. More soon!

Opportunity Is Knocking

> We arrived in Rochester last Monday and have settled once again into our home away from home - The Gift of Life Transplant House. By a stroke of good luck, we were able to see our dear friends from Israel whom we met here last November before their flight back Thursday...it was a total surprise to run into them and a great way to start our visit here. Also currently staying here are a few friends we made during our last visit in June, who are still here post-transplant and making good progress. As we've mentioned before, you must be a lung, heart, kidney, liver, bone marrow or stem cell transplant patient (or caregiver) to stay here, and it is truly a remarkable group of people. Lots of inspiration and positive vibes here at all times! We're all fighting the same battles, learning as we go.
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> After many zigs and zags and an incredible assortment of hurdles, John has been given preliminary clearance to proceed to his long-awaited stem cell transplant. We are not sure of the timing yet, as we have to wait about 7-10 days to get stitches associated with a lung procedure he underwent last week removed. We hope to get a firm date soon and we'll let you know as soon as we hear.
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> The meeting with his lead doctor on Friday went very well, and the good news is that John has responded very well to the 3-drug chemo combination he has been taking the last two months. As a result, he has reduced his amyloid levels in his bloodstream by half and his liver function has improved significantly. Additionally, his other blood cells have remained healthy in spite of the bombardment of the chemo. Nonetheless, both the treatment and the disorder have combined to sap his energy, and the next very critical goal is to increase his weight and strength in the next few weeks so that he can enter the transplant process with as much stamina as possible.
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> The transplant process and recovery are intense, and one has to be as mentally and physically strong as possible. He is considered a high-risk candidate for a procedure that is inherently very risky, but as we all know, when John puts his mind to something, he is beyond formidable!! We have a goal, we have a plan and we have the top treatment team anywhere. Most importantly, we have the best family and friends anyone could have. Thanks to everyone for your calls, emails, cards and your constant love and support! Please keep us in your thoughts and know that you are in ours as well.

For Dad on Father's Day

Sea Fever

I must go down to the seas again, to the lonely sea and sky,

And all I ask is a tall ship and a star to steer her by,

And the wheel's kick and the wind's song and the white sail's shaking,

And a grey mist on the sea's face, and a grey dawn breaking.

I must go down to the seas again, for the call of the running tide

Is a wild call and a clear call that may not be denied;

And all I ask is a windy day with the white clouds flying,

And the flung spray and the blown spume, and the sea gulls crying.

I must down to the seas again, to the vagrant gypsy life,

To the gull's way and the whale's way where the wind's like a whetted knife;

And all I ask is a merry yarn from a laughing fellow rover

And quiet sleep and a sweet dream when the long trick's over.

By John Masefield

Happy sailing, Dad.

It's All About Waiting...

John's having a very good day, with a minimum of side effects from the drug cocktail that he now takes daily. I'm happy to report that his lung is back to normal and he was released after four days in the hospital. They will do further routine monitoring over the next few weeks, but it looks like the air leak is healed and we will be flying home soon. Lesson learned...one that most of us already know...stay away from Cedars Sinai, or any hospital, if you possibly can! Even routine procedures have risk, and human error is possible even with the most skilled medical team. (Exception to this rule: Mayo Clinic in Rochester, where human error is almost nil! Why? Because they are superhuman!) It's amazing to think that John was walking around with a collapsed lung for two weeks and didn't even know it...a testament to how strong a guy he is! This would have stopped most people in their tracks!

He began the chemo regimen on Thursday, which consists of three different drugs taken orally. The goal is to stabilize heart and lung function and reduce levels of Lamba light chains, also known as amyloids, in his bloodstream. The amyloids have been on an upward march and the hope is that we will see significant reduction over the next few months. We will return to Mayo on August 15 for reevaluation. At that time there will be a determination as to which treatment plan is optimum given John's condition in August: chemo-only or transplant. The key issue in that determination will be the overall strength of his heart; if they feel he is doing well on chemo and the amyloids are declining, John may opt out of the transplant process altogether.

So once again, we wait. Then we wait some more. It's all about maximizing results and minimizing risk...and waiting!

Hope everyone's having a great weekend and we'll write more very soon!

Obstacles in the Road

As we knew from the start, the process of transplant is highly complex and one learns to be patient and adaptable. After several days of testing, the transplant team has advised that we delay the transplant for 2-3 months over concern that John's heart function is outside of the required parameters. Specifically, we need to reduce the level of a heart enzyme called troponin, which is a biomarker of cardiac injury on a cellular level. In John's case, this injury is the result of the amyloid deposits that are making his heart muscle less elastic and therefore less efficient at pumping blood. They are recommending a new chemo combination, which in many patients reduces troponin levels after a few months. These drugs are taken orally and thankfully can be taken at home. John will be monitored every two weeks through a blood test, with all results going directly to the Mayo team. Though we were very disappointed at this news, it is not uncommon for patients to experience delays in the program due to unforeseen complications. At least two other guests here at the Transplant House are here for their third evaluation after having been delayed in similar circumstances. We know that staying focused in the face of an ever-changing challenge is key, and we are hopeful that the new drug regimen will give us good results.

In the meantime, John's screening chest x-ray showed he had a badly collapsed lung and a significant amount of fluid. The assumption is that when Cedars drained fluid from his pleural cavity a few weeks ago, they put a small hole in his lung. The good news is that they discovered it here at Mayo and the very excellent pulmonary team sprang into action. After four days in the hospital the hole has almost completely resolved on its own (without surgery) and the lung has expanded to normal size. John is breathing better and we are hoping that he will be released from the hospital within a few days. He will have at least two follow-up visits with the pulmonary team, as well as with the cardiology department.

So that's it in a nutshell! Thanks to everyone for staying in touch...we'll keep you posted on this week's events!

Where Body, Mind and Spirits Soar

John and I arrived Tuesday in beautiful Rochester, Minnesota, ready to begin a week of evaluation and to prepare for John's next treatment phase. We are happily ensconced in our home away from home - the amazing Gift of Life Transplant House. All residents here are awaiting or have already received a stem cell or solid organ transplant. Their stories are all amazing. Our room is on the third floor of this 1909 house, overlooking a tree-lined street that is postcard-beautiful. Many of you have asked for the snail mail address, so here it is. Just address any mail to us, care of:

Gift of Life Transplant House - Room 64
705 Second St. S.W.
Rochester, MN 55902-2986

We are excited to see old friends here in Rochester and to once again be awed by the standard of compassion, care and expertise by all those at Mayo Clinic and Transplant House. The gorgeous sculpture pictured here is entitled "Man and Freedom" by Ivan Mestrovic; it greets all those who are fortunate enough to walk through the main lobby of the Gonda Building and is one of our favorite works of art here. Below it in the same area is a grand piano, where patients as well as accomplished musicians are invited to play. At Mayo, one is always reminded that the Mayo brothers strongly believed in the idea that art and music nurture the spirit and enhance the healing process. They worked tirelessly to take medicine to a higher level and were some of the first to practice integrative medicine before the concept even had a name.

The testing has gone very well and we are looking forward to meeting with the head of our transplant team, Dr. Gertz, on Monday. Thanks to everyone for your good wishes and special thanks to all those at home who are making it possible for us to be here. We couldn't do it without you.