tis the season

These are the days, aren't they? The days we've fought so hard for, the days we dreamed of during Kevin's long, long treatment. Thanksgiving is just the best holiday: wonderful family around us, a house full of fantastic food, and a heart overflowing with blessings and gratitude.

Kevin continues his final phase of the chemotherapy treatment. He has 6 months of treatments, which mostly consist of daily oral chemo. He doesn't feel sick, only fatigue, fatigue, fatigue. He feels it down to his bones, along with aches and pains. His broken ankle is slowly healing, probably due to the chemo, and he still walks slowly and with a limp.

BUT...he is worlds away from where he was last year! Slowly, incrementally it seems the dark curtain of his illness is lifting. It's easier to forget about the cancer these days - what a welcome relief from last year's daily barrage of illness and treatments.

So it's on to Christmas for us, starting last weekend with the opening of our tree farm. Yet again, our family and friends have rallied to run the farm in Kevin's absence, giving up their December weekends to sell our trees and wreaths. (If you feel the need to read more about us, [who doesn't??] you can check out our website at www.lazysusantreefarm.com. You'll find a wonderful article from our local paper about the tree farm & all our support.) Who knew we were so blessed and who would have thought leukemia would have brought all these blessings?? Like I said, these are the days!

Healing Nicely

Kevin got his cast removed today so the doctor could inspect his incision. It's healing nicely and his 10 staples were removed. He was recasted in a fluorescent green cast, in which he'll remain for 4 weeks. After that he'll be in a removable boot and be able to put pressure on the foot. The doctor also cleared him for restarting chemo, so if Dr. Strair agrees, he'll be back on track tomorrow.

Believe it or not, his ankle looks a lot better than it did 2 weeks ago! At least we're making progress.

Never a dull moment!

Sorry for the long silence on our blog, but it's been nice not to have any leukemia news to report!

Kevin has continued on his maintenance protocol, with daily oral chemo and monthly IV chemo. Overall, he has handled it pretty well. He has no complaints of feeling ill or nauseous. The biggest problem is the chemo-related fatigue. Almost every day he needs to nap and a few days a week he spends the whole day in bed. The fatigue is unpredictable and frustrating for Kevin, because he otherwise feels pretty good. His last bone marrow biopsy at Johns Hopkins in May showed no leukemia, so the chemo seems to be doing it's job.

Because his fatigue has been so erratic, Kevin made the difficult decision not to return to work just yet. It had been his hope to return to work in mid-June, after a month on the maintenance regimen. But after much discussion, we both realized there was no way Kevin could be functional for 40+ hours a week, especially with his physically demanding job. Dr. Strair suggested that his body may adjust to the chemo after 4-6 months and he may gain more stamina. Kevin's going to revisit this issue with his employer in September, based on how he's feeling. In the meantime, Kevin does have days when he feels well enough to work out in our Christmas tree fields. He's been able to mow, spray, and tend to his trees, hoping to gain back some muscle strength and stamina. He tries to stay out of the soil, as there are real concerns about fungal infections because he's immuno-suppressed. I'm sure Dr. Strair would prefer he had a desk job, but there is an immense mental/emotional benefit for Kevin in doing something he loves. So we try to balance precaution with good mental health!

Now, in the never a dull moment category....

Two weeks ago Kevin had spent the better part of three days in bed, exhausted from the chemo. One early morning, while I was out exercising, he woke up feeling much better, had a wave of nostalgia come over him, and decided this would be the day he would try to ride his unicycle on our gravel driveway. The one he got for his 12th birthday. On his second attempt, he fell off, landed on his ankle and broke it in 3 places. Luckily, Drew was outside with him and was able to get him the phone to call me. After a trip to the ER and 3 visits to the orthopedic office (because we haven't spent enough time in medical offices this year!), Kevin had surgery to repair his ankle last Wednesday. Needless to say, he has provided comic relief to his doctors and nurses. It's the first time Dr. Strair has had a leukemia patient who broke his ankle riding a unicycle, go figure. I'm giving him the benefit of the doubt and blaming his questionable judgement on chemo brain.

So Kevin now has a plate and 5 screws in his ankle. He will be in a cast for at least 5 weeks and then off to physical therapy. Of course all this is complicated by his leukemia. Because he needed surgery, Dr. Strair pulled him from chemo for about 3 weeks. This makes me nervous, but we need to do all we can to prevent infection. Because of the leukemia, Kevin is also at a higher risk for deep vein thrombosis from being immobile, so I have to give him daily injections of a blood thinner until he is out of the cast. He returns to have the cast and stitches removed on Thursday (he'll be recasted). If all looks good, we are hoping he can restart chemo on Friday.

Hopefully, there's a lesson in all this: next time Kevin wakes up from a multiple day chemo stupor, he decides to shoot hoops instead!!

Here's the ankle in question and the 35 year old unicycle:

With a little help from my friends

In yesterday's New York Times, there was an article about the power of friendship in maintaining your health and well being.  People with strong networks of friends are less likely to be obese, less likely to die of breast cancer and serious heart conditions, and even less likely to get colds.  

We don't need research studies to realize this; we have lived it for the last year! The feeling that someone's got your back, someone's carrying you when you can't walk anymore, someone's a phone call away with a solution, some chocolate, or a half-hour to listen to your worries is irreplaceable. To know we're not walking alone is a gift unlike any other. So here's to friends and family!!

Welcome to our Pharmacy

Kevin is a man who always hated taking medicine, refusing a Tylenol for a headache or any cold remedies (in contrast, I've always been a "better living through pharmaceuticals" kinda girl).  So, here we are, 10 months into our cancer journey, and Kevin is taking anywhere from 10 to 25 pills a day. Multiple pill bottles with the mega-sized pill box to match! He does it without complaint and has learned the ins and outs of managing the associated side effects. 

Yesterday was Day One of the maintenance phase. Most of the medications are oral, thankfully, but the regimen is fairly complicated. One Day One, Kevin has to go to the Cancer Institute for an IV push of a chemotherapy drug, vincristine. On Days 1 -5, he takes a pretty big dose of prednisone, which gives him lots of energy and a huge appetite. The last time he was on steroids, I would awaken at 2 in the morning to the sounds & smells of him preparing his second dinner! On Day 2 he takes an oral chemotherapy drug, methotrexate. And every day of the month he takes another oral chemo drug, 6-MP. In addition he takes daily anti-fungals, anti-virals, and anti-biotics. The schedule repeats every month until June, 2010, with weekly blood work and monthly doctor's visits.  He will also get bone marrow biopsies every 3 months at Johns Hopkins, hopefully to avoid any more confusion about the DNA testing looking for leukemia. 

Kevin looks great and feels pretty good too. His energy is returning after the last heavy-duty dose of chemotherapy in February and March. The maintenance phase will hopefully be less intense than previous phases. Dr. Strair thinks he may be able to go back to work in June, depending on how he's feeling. That's great news for Kevin and hopefully a glimmer of light at the end of this tunnel. He will be limited in his outside work (no Christmas tree planting, digging in the dirt, splitting wood, etc.) for fear of fungus/mold/mildew in the soil and trees that could be a serious concern for someone who is immuno-suppressed. Anyone who knows Kevin will understand that being outside and working with his trees is his passion and he's a little lost without that outlet. Never fear, though, I have plenty of safe, inside tasks to keep him busy...!

We had a lovely Easter with our family and also enjoyed a week in the Outer Banks, thanks to our sister-in-law's sister, Ellen Maialino. What a pleasure to be together as a family, to have a week without a doctor's appointment, and to have Kevin feeling fairly good. After going through hell, these simple, simple pleasures are so important to us. 

I follow the blog of Dana Jennings, a reporter for the NY Times, who has aggressive prostate cancer. His last post spoke to me, especially during Easter.

We are about to enter a holy few days for Jews and Christians. Passover starts at sundown tomorrow, and Easter is Sunday. But then again, when you’re a cancer patient, each day is a holy day – no matter what your beliefs.

I have spent the past year in the dark ark of cancer, and there is no question that I have become a new man. I’ve been granted a wisdom that only arrives at the rugged confluence of middle age and mortality. And I know, soul deep, that I have not been cut open, radiated, and tried physically and spiritually so that I can merely survive, become a cancer wraith. Since my diagnosis — after shaking off the initial shock — I have kept asking myself, in the context of my belief: What can this cancer teach me?

The most surprising thing I’ve learned is that cancer can be turned toward blessing. Through the simple fact of me telling my cancer stories on this blog, many of you readers, in turn, have told your own stories. And that mutual sharing of our tales has changed my life for the good. Rabbi Abraham Joshua Heschel said, “Life is not meaningful … unless it is serving an end beyond itself, unless it is of value to someone else.”

None of us would choose to have cancer. But getting this unexpected mortality check has deepened my appreciation of and connection to this life. Each moment holds out the promise of revelation.

Cancer, like faith, urges us toward the essential in our lives, toward love and kindness and paying attention to the smallest, smallest detail. We suddenly understand that ice chips spooned into a parched mouth, that being able to simply urinate, are gifts, the kinds of ordinary gifts that make up our lives.

So thank you for sharing in our story, for praying for us, and for the many, many gifts you've given us. 

The results we were hoping for!

Dr. Meade from Johns Hopkins called us this Saturday with Kevin's bone marrow biopsy test results. It was good news! Hopkins did not find any evidence of leukemia, using the most sensitive tests the medical world has to offer.  The concentration of T-cells that was first found in October on a bone marrow biopsy was completely unrelated to leukemia and was polyclonal, not monoclonal. T-cells that indicate leukemia are monoclonal. Evidently, the tests Dr. Strair ordered in Seattle were not sensitive enough to detect the difference.  So, either Kevin is cured of leukemia already or the leukemia cells are there, but undetectable. 

And the most important result: the transplant team at Hopkins is not recommending a transplant for Kevin! As we've known from the beginning, the risks of a transplant are very high and potentially life-altering. In addition, the cure rate for a transplanted ALL patient is a dismal 30%.  Anytime you can avoid this most risky procedure, it's good news.  Dr. Meade believes that Kevin's chance of a cure with the chemotherapy regimen is about 60-65%, which is what Dr. Strair told us last summer. Because Kevin has T-cell ALL (as opposed to B-cell) and he went into remission very quickly last June, his chance of a cure increases. The benefits of the transplant just aren't worth the high risk, especially since Kevin would need alternative cell sources, like half-matched siblings or umbilical cord blood.  With the low odds and high uncertainty associated with transplant, Hopkins believes that chemo is the best course for Kevin. 

We have yet to meet with Dr. Strair about this, but our guess is that he will be in agreement. Kevin has finished his intensive chemo and will now move to the maintenance phase, which is less intensive and should allow a more "normal" quality of life.  He will still be fatigued and immunosuppressed while on this chemo course. We meet with Dr. Strair next Tuesday and hope to have a better sense of a timeline, including when Kevin might be able to return to work. 

I've written before about how cancer resets your priorities and your definition of success. Who would of thought a year ago that we would be celebrating ONLY a year and half of chemo for Kevin?! But compared to the massive and scary undertaking of a transplant, this does seem like a victory to us.  We've yet to win the war, but we just scored a major battle! We both feel celebratory and we'll take our victories when, where, and for however long we can.  For the first time in months, we feel like we can fully expand our lungs and take a deep breath. 

I keep reflecting on our timeline that led us to this point. Three days before Kevin was to enter the hospital for his 9/10 transplant, our donor backed out for medical reasons. We were quite disappointed and I spent days determining our next steps. At Dr. Strair's suggestion, we headed to Hopkins where they proposed running their specialized testing.  And here we are: no transplant necessary. Three days away from a dangerous procedure that Kevin seems not to need now. Luck? Coincidence? We believe it was the power of prayer and pure grace that opened this door for us. And we thank all of you for your continued prayers and for your gift of grace: your companionship, your compassionate listening, and giving us stamina and guidance. We've still got a long road ahead of us, but our passage feels gentler now and we're travelling with lighter hearts. 

Back from Baltimore with a pain in the back

We visited Baltimore on Monday and, aside from the big needle they put in Kevin's hip, it was uneventful.  They were very efficient, drawing his blood and performing the biopsy in record time. We should have results in about 2 weeks, results that will hopefully determine our course for the immediate future. 

Kevin has one more day of intense chemotherapy tomorrow.  This is a big milestone...8 months of any number of types of cancer killing therapies delivered in various ways (through an IV, into his spine during a spinal tap, shots in his arm, shots in his belly, orally, and 12 days of radiation).  It certainly wasn't a vacation, but Kevin handled most of it with courage and grace.  He was very blessed to have few bumps in the road, only one treatment-related hospitalization, and few complications. Since we've spent the last 8 months resetting our priorities, we believe his stamina and success are gifts and for that we are very grateful.  

While we await the Hopkins test results, Kevin will have 2 weeks off from all chemotherapy. He will likely need some blood transfusions over the next week (he's getting one unit tomorrow) to help him recover from the chemo. Then, if he doesn't move to a transplant or it's delayed, he will begin the 1 1/2 years of maintenance chemo. Getting to this point is a victory!

Thanks to Kevin's niece Erica and her boyfriend Daniel for spending the day with us Monday in Baltimore and sparing us the scary dining experience we had last time we visited! And thanks to all our family and friends who share their time, talent, and resources with us. We wouldn't have gotten this far without you.

It is what it is!

I follow a blog called "A Pastor's Cancer Diary" about Carl Wilton, a pastor in a church in Pt. Pleasant, NJ who has lymphoma.  I really connected with his latest post:

“It Is What It Is.” I can remember repeating that phrase on numerous occasions, myself, during the acute phase of my illness. I can remember taking an odd sort of comfort in it. There’s something strangely liberating about shedding all the myriad worries and distractions of everyday life in order to focus on one, true thing: living as well as you can.

One of the reasons “It is what it is” is comforting is that it reflects a fundamental truth: a cancer diagnosis is a lot scarier through the windshield than it is in the rear-view mirror. Eventually you adapt, your family adapts, your friends adapt, as together you learn to face the future, whatever it may hold. A few people around us are never able to do that, and withdraw – but most manage to make the transition eventually.

Yes, it is what it is. And, sometimes, it can even be beautiful...

Making this journey can be such a contradiction at times. The weeks of waiting for test results seem to go on forever. Forward progress is nonexistent.  Yet, at the same time, it feels like our life is built on a pillar of sand, shifting and changing every day. Some days I barely recall Kevin has leukemia; other days that knowledge nearly pulls me under. But from the beginning, Kevin and I, like many other cancer patients, have repeated our mantra: "It is what it is." Far from being defeatist, we know we are doing everything we can to help him beat his leukemia and there is comfort in believing it. And, amazingly, your brain allows you to adapt, to cope, and to get through your day in one piece. 

We finally heard from Hopkins yesterday about the bone marrow comparison test. Unfortunately, the second bone marrow sample (from January) was "compromised" and they were unable to get any results from it. So, they are unable to provide us any guidance about how we should proceed at this point.  The doctors at Hopkins would like to perform their own bone marrow biopsy on Kevin, believing they can better control the quality of the sample. Also, they want to run additional tests to look for any evidence of lurking leukemia. This is so key for making Kevin's treatment choice: if they can't find any leukemia, then he may not even need a transplant.  If they can find leukemia, he may need a more intense type of transplant then the haploidentical.

If your head is spinning too, join the club! The layers of complications in making a treatment decision keep getting thicker and thicker. Contradicting opinions from doctors, new diagnostic tests with results no one knows how to interpret, and terribly limited data about Kevin's disease all add up to one big headache! I consider myself fairly competent in digesting the medical aspects of Kevin's disease, but I must admit, it's getting more challenging to make my way through this dark tunnel of uncertainty. 

So, here's how we hope to proceed.  I am doing my best to push for a bone marrow biopsy for Monday at Hopkins.  I don't want to waste any time waiting (the results will take about 2 weeks). If we can't get in for Monday, we'll have to wait at least 2 more weeks because Kevin has restarted his chemotherapy this week.  They will not do the biopsy until he completes the 2 week course AND his blood counts recover.  The thought of waiting 5 weeks for this result is too much! 

Kevin is finishing up Phase 4 of the 5 phases of the chemotherapy regimen.  He has 4 days of treatment for 2 weeks.  He travels to New Brunswick 4 days a week for chemo injections and takes oral drugs every day.  After this phase is complete, he will begin the 1 1/2 years of maintenance chemo: oral drugs every day and an IV once a month. That's likely to change though...

Kevin's 4 haploindentical siblings have completed their blood testing this week, so we'll wait about 2 weeks to hear who is the best match.  Lots of love and thanks to Greg, Wayne, Denise, and Keith for taking care of their baby brother!

T-cell test & more waiting

After what felt like a long wait, we heard from our doctor at Hopkins yesterday. Their transplant conference had reviewed Kevin's case and the doctors had a "lively" discussion about how to proceed. It seems nothing with Kevin's disease is black and white, only gray. 

Some technical background first (skip to the bottom if you want to avoid the biology lesson!): 

After Kevin's diagnosis, it was recommended by Dr. Strair that we pursue the chemotherapy path, because he did not have a perfectly matched sibling that could be his donor. He was making his way through months of intense chemo, when a routine (if you can call drilling into your hip routine) bone marrow biopsy produced some suspicious results. Bone marrow biopsies are used to confirm that a patient is still in remission.  Before leukemia blast cells show up in a blood test, you can find them in your bone marrow. The Cancer Institute of NJ performs a gross pathology test, essentially looking for leukemia cells under a microscope.  Since June, they have never found any in Kevin's bone marrow or blood.

They also send Kevin's bone marrow out to Seattle for another much more sensitive test.  The test they perform is called a TCR gene rearrangement study, which can detect very very low levels of potential leukemia cells before a patient enters a full-blown relapse.  However, the presence of these T-cell gene rearrangements does not necessarily imply leukemia because several benign conditions may show such a pattern. We all have T-cells as part of our immune system and we all get spikes of certain types when we're fighting off an infection, for instance. Since September, Kevin's test has come back positive for low levels of T-cells. The big concern for Kevin is that we don't know if this leukemia or a more benign condition, but our doctor believed there was an 80% chance it was leukemia.  Hence, we moved toward a transplant, as our doctor felt this meant relapse was imminent. 

Hopkins says not so fast! They want to figure out if this result is leukemia-related (80% chance) or just what Kevin's body (leukemia or no leukemia) does (20% chance). They believe by comparing his first bone marrow biopsy (when he hadn't yet received treatment and was mostly full of leukemia cells) with the last one they will be able to determine what is really happening. They hope to have the results by next Monday. If it is leukemia lurking, then he will proceed to a haploidentical transplant.  If it's not leukemia, it's not clear that Hopkins would recommend a transplant at this point. If they can't prove that it's the leukemia, a transplant may be dramatically over-treating him. Why use a cannon when a bullet will work? Needless to say, that result would begin yet another round of second or third or fourth opinions. We are both glad that Hopkins is pursuing this testing and feel comfortable with their expertise.

So we wait again. In the meantime, Hopkins is proceeding like transplant is happening. Insurance approval is still being sought and then blood tests can begin. Doing this extra testing shouldn't slow us down any. 

Kevin feels well, but extremely fatigued.  He has some good energy days; yesterday he was able to ice skate a little with the kids - they were thrilled! But today, it's caught up with him and he's been couch-bound all day. There's no predicting how he's going to feel from day to day, even hour to hour. We're both learning have no expectations and whatever it is, it is. 

On a lighter note, our bathroom is done and looks fantastic! Now, I'm not even gonna think about if Kevin doesn't need a transplant, which means I didn't need to pay someone to finish my bathroom....!! Not that I mind...there's even a silver lining with leukemia!

 

Holding pattern continues

"I'm just hangin' on while this old world keeps spinnin'

And it's good to know it's out of my control."

Those words from the Al Anderson song capture our lives these days.  We're holding on, waiting for a direction and forward progress, knowing we're doing all we can and leaving the rest to the doctors.  It's truly an exercise in patience and letting go.

Yesterday would have been the day Kevin got his new cells from his anonymous donor.  Instead, we spent the morning in New Brunswick, getting chemo.  His doctor has decided to restart his chemo regimen while we are waiting for a new date, in hopes of preventing a relapse.  Yesterday Kevin got 2 drugs, vincristine and doxorubicin, known among cancer patients as the "red devil." The chemo is bright red, like Kool-Aid, and causes an instantaneous metallic taste in his mouth.  Many chemo patients avoid red colored drinks after getting this drug and the mere mention of the name is enough to turn my sister-in-law's stomach (Maureen had this drug too, during her breast cancer treatment).  Happily, with enough pre-medication, Kevin seems to handle it pretty well and can still stomach red cranberry juice!

So, we are waiting to hear back from Johns Hopkins.  The transplant team will be reviewing his case next Tuesday and will make a formal recommendation to us.  Many transplant doctors, including Dr. Strair and many of the doctors at Hopkins are in Florida this week for a transplant conference, which is delaying some of our progress. We're hoping that Hopkins will send out the blood test kits for Kevin's siblings this week. 

Kevin will be getting another bone marrow biopsy (his 8th!!) and a CAT scan on February 23rd, to confirm he's still in remission.  Then based on timing, he may begin the first of 8 more days of chemo, 4 times a week for 2 weeks.  

In the meantime, we're hanging on!

Our visit to Charm City

We had our whirlwind visit to Baltimore yesterday and our heads are still spinning!  Processing very technical medical information and trying to understand outcome data for experimental procedures is not an easy task.

We were lucky enough to have our dear friend Katy join us for our visit.  It's always a help to have another set of ears and another perspective when heading into a big appointment. Before our doctor's meeting, we bolstered ourselves with a little drink at a very shabby Baltimore restaurant.  Johns Hopkins Hospital (JHH) is a huge medical center with multiple buildings and thousands of workers/patients but it's oddly lacking in nearby restaurants.  So we experienced a little local color!

We met with Dr. Bolanos-Meade for an hour and a half.  He spent a lot of time with us, explaining the protocol, its successes and its unknowns, and his thoughts about Kevin's disease.  JHH only does 2 general types of transplants: a fully matched 10 out of 10 or a haploidentical transplant (using a half-matched parent, child, or sibling).  They will not transplant someone who has a 8 out of 10 match (as Kevin does), feeling it is not worth the quite large chance of mortality from the transplant itself.  The doctor feels these transplants border on "criminal" because of the 50% transplant related mortality rate and serious possibility of complications if you make it past the transplant itself.  It became very clear to us that the 8 out of 10 transplant was off the table.

JHH has had great success reducing side effects with their haplo transplants.  With their new regimen, they've been able to reduce the transplant related mortality to 5-10% (compare that with the 50% above).  They have also been able to reduce the risk of serious and deadly infections dramatically.  They are very confident in their regimen and it's currently being expanded to 25 other transplant centers in the US.  JHH has done most (80%) of the 200 haplo transplants in the US, so they are the place to go for this new procedure.  It also became clear to us that Kevin needs to go to a major transplant facility to have his treatment.  We've been treated very well at Cancer Institute of New Jersey, but it's time to move on.  

There's one huge unknown with this haplo transplant: leukemia outcome data.  This is a very new procedure, with very few patients who have been through this, so there is scant data on how well the transplant cures patients of leukemia.  There have been some small studies published, but there were from early clinical trials that tended to accept the worst case patients.  Other medical centers have larger data sets, but didn't use exactly the same protocol.  That's a big piece of the puzzle that's missing, but it's what you accept being on the cutting edge of medical science!

We asked the doctor to begin the transplant process for Kevin.  After we get insurance approval (which may not be a sure thing with this new procedure), JHH will send out blood test kits for Kevin's 4 haplo siblings.  They will also order additional testing for Kevin and whichever sibling is chosen as the donor.  The earliest Kevin will be back in for transplant would be 4 weeks, but it could take as long as 8 weeks.  Of course our concern is Kevin relapsing, so the doctor recommended restarting his chemo course as soon as possible.  

The transplant procedure itself is entirely outpatient, unless complications arise.  Kevin will have to visit their outpatient treatment center every day for 60 days for infusions, blood work, and tweaks to his medicine.  They require patients to stay within one hour of the hospital (we are 2 1/2 hours away), so we will need to find local housing.  If all is well, Kevin will be released to his local oncologist around day 60.  

So, it looks like spring in Baltimore for us! We hear the Orioles aren't that great this year (Dr. Bolanos-Meade says "they stink") but a trip to Camden Yards wouldn't be the worst thing in world.  And maybe we can locate some decent restaurants too! We'll keep you updated.

No new stem cells, just a new bathtub

Instead of getting admitted to the hospital for a transplant, we went shopping for new bathtub!  The thrills never stop! Prior to Kevin's diagnosis, he demolished half of our bathroom and began renovating it.  Since then, he's been a little preoccupied and unable to complete the bathroom.  No worries though, it was ugly, but functional. Until the transplant talk started.  

Kevin's doctor advised us it wasn't smart to have our only full bath half-deconstructed when Kevin got home from his transplant.  Mold, mildew, and an open construction site would not be a good environment for a severely immuno-compromised person. And besides, it would be a long time before Kevin could get back to the business of finishing the renovation.

So, we've hired a contractor to finish the job and he starts tomorrow.  The delay of Kevin's transplant buys us a little more time (not too much, we hope) to complete the job before he gets home.  Here he is with our new tub...

Another silver lining: he has permission to have a beer while watching the Superbowl today.  Yipee!

It's a no go...

The only thing you can count on is not counting on anything! We should have known from the unpredictability of leukemia that this could happen, but we were still surprised.  Kevin's anonymous donor has withdrawn due to medical issues.  We found out last night from Dr. Strair, Kevin's oncologist, just 3 days before he was to start intensive radiation to destroy his immune system.  Due to privacy concerns, we can never know what happened to his donor, but it could be anything: a pregnancy, an injury, a heart issue, anything. The end result is that we're back to square one, beginning a new search for a donor. 

We were both determined and mentally prepared for Kevin to be admitted on Sunday and begin his transplant on Monday, so this has taken the wind out of our sails a bit. We've had a crazy 24-hour scramble to understand our options going forward and to try to get things moving for next week.

We have 2 possible options.  There is a secondary anonymous donor that may be an option.  You may recall that Kevin's first donor was a 9 out of 10 antigen match.  This secondary donor is a 8 out of 10 match, not as good but still a possibility.  Our doctor has contacted the National Marrow Program and asked that this donor be brought in for testing.  Despite an accelerated effort, this process may still take a few weeks, as they must locate and contact the donor, determine if he/she is still interested, and then begin physical exams.  Needless to say, Kevin and I are a little gun shy about the unpredictability of using an anonymous donor again! It's especially frustrating to be waiting and feeling like we are wasting time, not knowing when/if the leukemia is returning or not.

The second option is a relatively new procedure called a haploidentical transplant.  In this case, the donor is a half match to the recipient (for instance a 5 out of 10 match).  Interest in this type of transplant is increasing because many people (like Kevin) do not have viable full-match donors.  Most people have at least one haplo donor in their lives, either their parents, children, or siblings.  Kevin is lucky enough to have 4 siblings that are haplo matches, Greg, Denise, Wayne, and Keith.  Right now, it looks like Keith and Wayne are the best matches, but they will need further blood testing to see who's the best.  Anyone willing to wager??

The preparatory regimen and drugs associated with this procedure are quite different than a typical transplant and research in recent years has made the procedure much safer.  Because the regimen tends to be less intense, much of the treatment can be done on an outpatient basis. This is a relatively new, experimental procedure and, as such, we will have to travel to Johns Hopkins Hospital in Baltimore for treatment, if this is the path we choose.  There are only hundreds of people in this country who have had this procedure, but Johns Hopkins is having excellent results, in the words of Dr. Strair.  I was able to get Kevin an appointment there next Thursday, when I am sure we will learn much more. 

Our goal is to proceed as rapidly as possible, hopefully rescheduling with 2 weeks.  The logistics of a possible haplo transplant are more complicated, as Kevin will need to be in Baltimore for about 3 months! We've heard many good things about Johns Hopkins and are anxious to learn more.  

Alas, my dreams of female blood for my husband may have ended.  All the cards and flowers out the window...replaced with my brother-in-law's blood!  What did I do to deserve this??!!

As I said in my email, I will be updating this blog in lieu of email updates from now on.  I will post whenever I have new information (hopefully a few times a week), for anyone interested in the details of our journey.  Thanks for reading.