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!