Christmas with the Kranks

Ross & Andrew, 1970

For those of you who've read John Grisham's Skipping Christmas, you'll recognize the Kranks. They decided to opt out of the Christmas frenzy (and some might say spirit). Well, we're not completely skipping Christmas, but our holiday will look very different this year.

Because of Andrew's suppressed immune system, we won't be attending any crowded Christmas parties. We also won't be hosting our annual Carol Singing party, breaking an 8-year streak. Since it's been a different kind of year, we've decided to have a different kind of Christmas. While it is the year to send out our bi-annual Christmas cards, this year they will go out via email. (Make sure we have your up to date email if you want one!) And the biggest change of all? We will be driving south instead of north - to Florida for a family vacation over the Christmas holiday. No stockings over the fireplace. No candlelight Christmas Eve service at our home church. No fabulous meal in Greenwich with the Joneses. Just a lot of time in the car with each other and a chance to relax and play together for a week in warm weather - refueling the family batteries that have been run down so much over the past year.

Maybe we will view these changes as a chance to slow down and appreciate all we are missing this Christmas. Maybe we'll learn what we are fine to miss. As we will not be seeing many of you out and about, please invite yourselves to see us. We are thankful for those who are already doing this to keep us company while protecting us from holiday germs. And, above all, we hope the change of pace - and distance from all the frenzy - will help draw us closer to the true reason for the season.  As we look to Christmas and beyond, we have great reason to hope - for a 2013 full of good health and a new lease on life.  What a gift!   

Full of Thanksgiving

As you can imagine, we are especially thankful this year!  It was almost exactly a year ago that we first discovered the tumor in Andrew's chest that quickly led to the lymphoma diagnosis.  What a crazy year it has been!  The journey hasn't been "fun," nor is it "over,"  but we are grateful that - as my sis in law Kelly said yesterday -  Andrew has been a poster child for how to live an active lifestyle with cancer.  We don't recommend this journey, but it has led us to treasure all of our many blessings even more than before. We count each of you among our blessings!  And hope that you enjoy counting your own this holiday season.

Clean Scan & Clean House

Almost as an afterthought, we received the CT scan report showing that Andrew has no signs of cancer in his body. This is exactly what they were expecting, hence the nurse practitioner's casual, "Oh yes, I need to print out your scan results. I'm sure they're fine...."  Now Andrew has graduated from Hopkins care and won't need to be back until December 13th for a check up with the head doc! The real next big event will be the 6 month more in-depth scan in late March.
Andrew will still be receiving Rituxan on Wednesdays through early December. (He just can do this in Virginia, not Baltimore!) And we learned from last week's dismissal class that he is still quite vulnerable to infection and needs to avoid, among other things, crowds in enclosed spaces, sick people, construction zones, exposure to the sun, and sushi.  So we are working hard to keep a germ free house and are keeping a list of movies & restaurants we'll enjoy once we're allowed out.

The happy END of the XC State Championships Meet

Thanks for trekking with us.  We feel the tide turning and are ever grateful.  Of course, there will be many more scans to come.  The journey isn't over.  But we feel incredibly blessed right now, all the same, like the page is turning from one (long, grueling) chapter to the next.  It seems, as Winston Churchill famously said: "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." 

Surprise!

Andrew had his scan today!  And it was just a CT Scan, not a more in depth PET/CT scan.  We should have the results by Wednesday when Andrew gets his central line (Hickman Catheter)  removed.  We had been told the scan would be on Wednesday but, with a 4 hr infusion of Rituxan AND the operation to remove the central line, adding one more thing would have made for an extra long day.

The doctors are expecting today's scan, so soon on the heals of the chemo and radiation AJ received as part of the transplant process, to show no trace of cancer.  While to them it isn't a big deal, we will rejoice mightily at an all-clear scan.  The next big test will be in another 4 months, when the 6 month post-transplant scan will reveal whether or not the cancer is growing back.  But that seems like light years away. 

For now life is full - full of joy, good conversation and laughter, kids and their school work and sports, and our own work picking up speed again.  Not surprisingly, this Thanksgiving we feel especially grateful!

Back to Normal...almost

We've been home for nearly two weeks and it has been wonderful. We have enjoyed every minute with the kids, watching field hockey, having family dinners, helping with homework and SAT prep - all of it. The honeymoon has not worn off yet. Meanwhile, both of us are increasingly back to work and loving it.
Next week will be - hopefully - the last week at Hopkins. Tomorrow we have our "Discharge Class." We've been warned about this class and how all their dire warnings and prohibitions for the future will scare us into submission. Tomorrow we should also receive our schedule for next week. This is huge as Andrew will have both a pet-scan to confirm the cancer is nowhere to be found AND a procedure to remove the central line in his chest. Soon thereafter he should be free to play tennis again!!
Stay tuned for specifics around these things. We continue to ask for your prayers. Thanks!

Home Sweet Home!

Thanks to everyone who wished us well after our last post and to all who have welcomed us home!  It has been great to be back with the kids! My parents are now enjoying a well deserved retirement back in Delaware. The weekend weather has been (ironically) beautiful so we spent a lot of time outside. And we are getting extra time with the children - school has been canceled for tomorrow (Monday) due to Sandy.  It's like the good old days in Africa, preparing for extended power outages!
Because of the storm, Andrew decided to head north and spend tonight in Baltimore before his Monday 9:30am appointment, the first of only three this week.  We are counting on his being able to return to Virginia midday before the teeth of the storm hits us. Thanks again for the sweet homecoming.  We hope the storm has a minimum impact on all of you.

Brotherly Takeover Complete!

Last week, we wrote that they were running a test to determine what % of the blood cells in my body are from Ross, my brother, and what % from me.  The doctors wanted to see at least 50% of Ross's cells in this test.  Well, the results are in and I have officially 100% Ross's cells.  They weren't necessarily expecting a total takeover until the 60-day post transplant mark but my brother's clearly a pro, getting it done in a mere 30 days!  Part of me (the prideful part) expected my own cells to put up more of a fight…but I'll get over it. After all, it's a brotherly takeover, not a hostile one, and it's a great sign that Ross's stem cells are already building a new and improved immune system inside of me.  I'm incredibly thankful for his gift.   

 

Of course, the success of the transplant is only the next ridge on our way to the mountaintop (a hugely taxing one, for sure).  We now turn to knocking out the cancer through 8 weekly rounds of Rituxan, a drug that will work in tandem with my new immune system to kill off any remaining cancer cells.  I received the 2nd installment yesterday and the body is taking it well.  Seeing lots of light at the end of the tunnel!

As you know from our last blog, we had a chance to go home to be with our kids Saturday afternoon and Sunday.  It's hard to express just how sweet the time was after 40 days confined to the hospital grounds here in Baltimore.  Christine and I soaked up the beautiful weather and fall foliage, and, most of all, the time with Nate, Darcy and Evan, catching up on their latest doings and at least some of what's been on their hearts and minds.  And the best news is that it's all systems go for us to check out of our Hopkins apartment tomorrow!  (We'll commute to Baltimore going forward until Day #60.)  While we recognize that re-entry will be challenging, we cannot wait to be together again!  For our praying friends, please lift up our return to Falls Church and that the transitions back home and (gradually) to work go smoothly for us, filled with grace for each other.  We are so thankful for how God is restoring my health and providing for us as a family, including through the gifts and support of so many of you. 

No News is Not Bad News...

Sorry for the radio silence.  We learned on Wednesday that the blood test results that will hopefully confirm Ross's hostile takeover will not be back until next week.  This bit of news quickly was overshadowed by the permission we have received to BOTH come to Virginia this weekend.  So, after an ironic 40 days in the wilderness of isolation from our family and community, Andrew will be stepping into our Falls Church home tomorrow afternoon!

During these 40 days we sure have felt tempted.  Tempted to feel left out, sorry for ourselves, and frustrated by it all.  We also have struggled with how time moves so much more slowly for us than for all of you.  Not fair!  We will thoroughly enjoy being home this weekend.  And the trip will be even sweeter knowing that - assuming no train wrecks next week - we get to come home for good next Friday, October 26th, commuting back and forth to Hopkins for appointments thereafter.

So although there is no news on the blood test, the other news is all good!
Taste and see that the Lord is good; blessed is the one who takes refuge in him. Psalm 34:8

Update to the Next Big Thing

Yesterday Andrew learned that he is switching to a 3 clinic visits a week schedule!  Now, he's not able to leave Baltimore, but it does mean that he won't go into the clinic today or Thursday.  It also means that tomorrow - Day #29 - he will have blood drawn to test the percentage of Ross's immune system in his.  Andrew also will begin the "Rituxan" treatments.  Rituxan is the drug that specifically targets Andrew's type of lymphoma. The idea is that pairing Rituxan with Ross's immune system will knock out the cancer in a way that the Rituxan wasn't able to before when it was working with Andrew's own system.
So tomorrow will be a big day. Previously, Andrew had no adverse reactions to Rituxan.  But now it will be interacting with a new immune system so there is a bit - just a bit - of uncertainty.  Please pray that the Rituxan treatment tomorrow goes without incident.  And continue to pray that they discover that Ross's cells have the upper hand in Andrew's body.
As always we remain so thankful for friends and family near and far.  Andrew's mother has been with us, allowing me to travel out and about.  Last night, friends from Rwanda now residing in Baltimore, Tambry & Dan Brose, had us over for a second great dinner to rival any local restaurant. This week, the children are under the care of our former fellow, Michelle, and her boyfriend Hyatt, so that my parents can spend time back in Delaware.  From the photo we received last night, I am not sure the kids will want us back! Folks are visiting, calling, emailing, and praying unceasingly.  We are so blessed.

The Next Big Thing

We continue to hope that we are coming to the end of our long stay here in Baltimore.  The next big test is on Day #30 (today is Day #27).  On Thursday, they will do tests to determine how much of Andrew's blood cells are Ross's and how much remain Andrew's own.  In order to see that the transplant is "on track," they want to see at least 50% Ross's cells.  Please pray that like the childhood pillow fights, Ross has the upper hand.

In other news, Andrew continues to feel stronger!  The pills are still a nightmare, but we're managing them with fewer side effects.  And as of today, Andrew is manifesting no grueling side effects of "graft v. host." This may still come, but we're thankful that so far there have been no such complications.

I (CJ) am also feeling great, having come home to an "improved" husband after a whirlwind trip to Falls Church (to see the kids participate in sports and homecoming) and then to Charlotte (for a wonderful reunion with college friends, despite the sad occasion of the funeral of one's father.)

Darcy & Nate goofing off before school

Duke friend Ellen and her two younger children in Charlotte

More Numbers: 20, 29, and 35

Today's a big day for Christine and me.  It's our 20th wedding anniversary!  For the most part, we've agreed to take a rain check.  It's really hard to feel celebratory while slogging our way through the daily routine here at Hopkins.  The routine includes a stomach that never seems to settle and just an overall sub-par feeling - and, for Christine, a dragged-down feeling from putting up with me, and the monotony of it all.  All that said, miraculously, I felt reasonably good today and Christine and I had a chance to get down to the harbor, walk along the water, and enjoy a nice meal together back in our apartment.  Meanwhile my blood counts are trending upwards now - a huge thanks that my body is bouncing back, new immune system and all!

Over the last several days, I've migrated from daily meds administered intravenously at the hospital to a confusing array of pills that I'm now taking, in varying doses, frequencies and hours of the day and night.  In total, I'm taking 29 pills each day, at last count. (For someone who, prior to battling lymphoma, hardly ever took pills of any kind, it's overwhelming.)  And every day, my regimen changes based on the latest blood work and the doctors' assessment of what I need to be taking to manage the graft versus host dynamics playing out inside of me.  Never a "dull" moment…and yet plenty of them.

Finally, it's Day 22 post transplant today, which means it's less than two weeks before we reach Day 35.  What's the significance of that?  Well, if all goes well, we've been told that we can return to Falls Church at that time and thereafter commute to Baltimore three times a week for monitoring and any required treatment.  Definitely hopeful that Day 35 will bring a joyous reunion with our kids and return to our local community that has poured out so much love on us during this long trek.  We simply cannot wait!     

Untethered!

We have a big praise report!  AJ is off the round the clock IV antibiotics! Woo-hoo!  His white blood cells are continuing to rise and are at the point that these heavier doses of antibiotics are not necessary.  It was so nice to fall into bed last night at 11pm knowing the alarm was not set for 12:45am, 1:30am, and 7:30am!  The other great news is that, at least for yesterday, Andrew's other counts were hovering just above the crisis point and he avoided any transfusions.  I hate to even mention this because that might not be the case today.  But for yesterday it was a pleasant surprise to have no antibiotics and no transfusions.
Now, we are not out of the woods yet.  Despite a rising white cell count, Andrew's immune system is still weak.  We had to cancel two sets of visitors for today, fearing exposure to sickness. Going back on antibiotics would be devastating! And as Andrew receives more drugs to manage the counts, he gets more side effects, which necessitate more drugs.  The cycle seems endlessly confusing.
But overall we are thrilled that we are seeing progress. It's still a haul.  We're at day #17 and the earliest we can even hope to commute from Virginia is day #35. (Andrew will be monitored frequently until at least day #60.)
Thanks to everyone for your prayers.  We've even been entertained as we had no less than four visitors yesterday - including Andrew's brother Gordon - who all brought great stories and laughs.

Long Days

Watching Andrew's counts this week has made for long days.  His platelets held for a couple days, following a transfusion on Sunday, but are likely to be back to “need another transfusion” level very soon.  Andrew's red blood cell counts remain just above the "can't avoid a transfusion" level, but are slowly and steadily dropping.   These types of cells are expected drop and recover more slowly, so we're not surprised.  

Meanwhile, the white blood cells were the first to plummet but also, as of today, the first to jump back up!  They still have a ways to go before the "you can walk around without a mask" level, which is the same level as "you can take a pill instead of self-administering IV antibiotics in the middle of the night."  I'm also secretly hoping this will be the "why don't I help you fix dinner" level. 

Both Andrew and I have admitted that we're just bored, tired of sitting in the hospital and our cramped apartment, and feeling cooped up inside.  The clock moves slowly.

The one exception was the short visit we had from the kids this past Sunday.  It was great to see them, hear their stories and banter, and show them around our new digs.  We have missed them greatly and, not surprisingly, the time flew by!  We didn't even have time to take a group photo.

We know this is just a short season, but boy does it feel long, especially on a rainy day.  Andrew is making progress; we just have to be patient.  We'll keep you posted after a few more long days.  Thanks once again for all the emails, calls & texts that help the time pass a teensy bit more quickly.

Day Ten: By the Numbers

In the past week, we’ve had 5 visitors, I’ve swum 4 times, we’ve received 3 photos of Nate and 2 of Darcy and we’re looking forward to 1 great visit with the kids this coming Sunday.  So despite feelings of Chester, Florence Nightingale and sleep deprivation, we’re managing pretty well.  And while it’s fun to contemplate these numbers, the real numbers we are constantly monitoring are more serious.

Every day the docs check a wide variety of levels in Andrew’s blood.  For nearly a week he has been neutropenic (having next to no white blood cells to ward off infection) and his red blood cells (which give him energy) and his platelets (which help his blood clot) are steadily dropping and getting very low.  This is expected.  But it means Andrew is extremely vulnerable to infection, fatigue and – should he cut himself – loss of blood.  Every day we look at his “counts” and see where he is.  They tell us that Andrew’s counts will start to climb back up anywhere between Day 14 and Day 27 post-transplant.  (Another number we are constantly counting – today is Day 10.) But it is not an exact science!  Chances are, Andrew’s counts will drop further before they rise.  And this necessitates blood transfusions, something we of course would rather avoid.  When we tell the nurses this, they put on their “reality-check face” and tell us to expect one by early next week.

And yet all of this is good.  Andrew doesn’t “have counts” because his cells have been wiped out by chemo and radiation and Ross’s stem cells are still early in the process of producing mature blood cells. Like Andrew, Ross was never the speediest Jones – that was Regg – but we’re hoping Ross’s stem cells crank out a new and improved immune system in Andrew in record time!

Feeling like Chester

Supplies for "Chester"

As I think all may appreciate by now, Christine is doing yeoman’s work tending to me when I’m not at the clinic with the professional nurses.  I never knew she had it in her (I don’t think she did herself, actually) but I’m grateful for how she’s stepped up to the plate.  She’s definitely not contemplating a career change but she’s nailing everything she’s been called on to do here.  How did this happen?  Well, early on in our stay, they trained Christine to play the para-nurse role by having her work on a rubber “shell” of a human dummy named “Chester” – we assume for the chest that so many trainees learn the ropes on, changing bandages, flushing the IV line, administering meds, etc.   They pulled out Chester again recently to give Christine a refresher. 

I got to thinking about how day after day of treatment and tests is making me feel like old Chester.  The repeated pokes and prods of so many hands, day after day, week after week, begins to make one feel like an object, plain and simple.  So, I’ve been feeling like Chester lately and could use a day off – actually a lot longer than that!  On the other hand, the hands and feet administering everything to me are wonderful, caring people and I feel good about that, of course, and oh so thankful.  But I do long to be up, “off the mat” and back to my active, alive and fully human self.  Please pray for my patience in enduring these long, hemmed in, Chester-like days…can’t wait to bid them good riddance!

Released - but with new tethers....

After an interminable wait, Andrew was final released from the hospital at 5:30pm!  The poor guy's knees were stiff from sitting all day. He's feeling good though - with an appetite, without a fever. But we now have these extra antibiotics to administer, through his catheter.  Yes, every 6 hrs I (CJ) need to do this long procedure to intravenously give Andrew antibiotics.  Did I mention that I did not go to nursing school?! And this is in addition to a myriad of pills.  We are most bummed about staying up past midnight and then awaking at 6am to give these drugs.  Finally, today is the third anniversary of the passing of Andrew's father, so I guess we are all just feeling a bit low.
Fortunately, everyone on the home front is doing well.  Keep sending those photos. And we once again want to say we are SO grateful for each of you.

Admitted Cont.

Luckily Andrew's fever dropped pretty quickly last night once they started antibiotics. And thankfully it hasn't come back! However, they are keeping him a second night while they confirm that all is well. Actually, Andrew feels pretty good, despite the protocol here of always having him attached to an IV saline drip. We did find a quiet garden adjacent to the original building with its elegant architecture and enjoyed a bit of today's glorious weather. We're looking forward to having him be released in the morning - assuming no fever overnight.

Andrew Admitted

Yes, tonight, after two horribly long days receiving a high dose of chemo, Andrew developed a fever high enough to mandate that he be admitted overnight. This is a blow. He hasn't been feeling great, with a slight fever for the past few days. But only tonight did it rise above the 100.5 threshold. Most likely this is a fever caused by his body interacting with Ross's cells (the graft) and this is a good thing. But because Andrew has no immune system now, they want to monitor him closely to be sure this isn't an actual infection.
So, pray that we all get good sleep tonight, that his fever drops, and that he's back in our apartment soon. Thanks so much!

Day Two: Don't send flowers

Transplant day is called "Day Zero" so we're now at day two.  And, as we had been warned, Andrew feels crummy!  He actually awoke with a fever (yikes!) - but nothing too high and it has since come down.  However, we spent a while at the clinic waiting for his blood work to determine if this is just par for the course or something serious.  His counts are good so no need for an IV of antibiotics.  Phew.  They are still testing his blood for more serious things and those results won't be in until much later.  However, the expectation is that this is just his body doing it's thing, now that Ross's troops are mounting a take-over.
Tomorrow will be the first of two VERY long days, where Andrew is at the clinic for 10+ hours receiving the chemo that will minimize the chances of  graft rejection/graft v. host complications. Poor guy, he is dreading this and how he knows he'll feel afterwards.
If you are wondering what you can do to support Andrew (and me) during this time, don't send flowers.  Seriously, with a compromised immune system, Andrew is not allowed near them as they might have mold.  The best thing to do is to continue to send photos of our kids in action, emails and texts with news from home, or book suggestions. Each evening, Andrew and I enjoy sharing the emails and texts we've received throughout the day with each other.  It makes us feel like we are still there at home!  So many of you are already doing this, so thanks...and keep it up.
Because Andrew's mom is with us and  because Andrew is resting comfortably, I'm heading south shortly to watch a field hockey game!  I'll have dinner with the family before coming back to Baltimore tonight.  More tomorrow (or Sat) on the long chemo days.  Until then continue to pray for healing and for the protection from more fevers - especially for the 6 hours I am away.  Thanks!

Transplant Day: Last drops

Well, six hours later, all of the "new troops" have entered Andrew! He still feels fine, great even. It's poor Ross who's still recovering, still really drowsy from the anesthesia. Actually Andrew should still feel great for the next few days. They estimate that as soon as Ross starts to feel better, Andrew will start to feel crummy. For now, we'll enjoy what everyone here is calling AJ's new birthday!

Transplant Day: First Drops

Ross's blood arrived and all the nurses commented on the large quantity! It's now in a big bag, slowly entering AJ's bloodstream where by some miracle - the docs don't even know exactly how it works - it will find its way to AJ's marrow. The whole process will take several hours. Since Ross has the same blood type as AJ, no one is expecting any complications. Even so, everyone is monitoring Andrew carefully. It's a big day. We hope Ross will be out of recovery and up to visit soon.

Transplant Day: Waiting

Here's Andrew getting a massage - with Regg looking on - while we wait for Ross's stem cells which are being harvested as I write. Don't be fooled, AJ looks great but he's feeling the effects of the radiation & is quite tired.

Day Negative 1: Tomorrow it really begins...

Druid Hill Park

Well, not that it hasn't begun already.  But tomorrow Andrew undergoes Total Body Irradiation (TBI - easy to confuse with TMI).  Ross, Andrew's brother and donor, arrives for tests.  And by the evening, Andrew's other two brothers, Regg & Gordon, and his mom will be here.  The TBI will deal the final blow to Andrew's immune system, weakening it just enough so that when Ross's stem cells enter AJ on Tuesday afternoon, his immune system won't have a chance. Personally, I (CJ) was a little concerned that his blood counts at this point aren't all that low.  I know Andrew is a fighter, but we need his immune system to take a whack before Ross's enters the picture.  The doctor has told us not to worry, that there is always a "lag" in the numbers we see on AJ's daily bloodwork report.  And Andrew assures me that there is no way he will stand up to the brother who used to sit on him with a large beanbag when they were young. (Ross is a fighter, too!)

Andrew at Fells Point

Because Andrew has been able to get out and about, we've taken advantage of both this fabulous weather and some great things Baltimore has to offer.  Saturday, we took a forest bath in Baltimore's largest city park discussing world events (not chemo! yeah!).  And today (Sunday), when Andrew awoke craving pancakes, we ventured to historic Fells Point for breakfast. It was a real gift to have a few moments that felt like a weekend!

So, prayers going forward?  Please pray that Andrew tolerates the TBI as well as he can.  We expect fatigue and nausea but it would be nice if these were not too debilitating.  Also, with Andrew's family, it will be tight quarters in patient housing where we are staying. Pray that all of them are 100% healthy.  It will be a real boost for Andrew (& me) to see them and we don't want to have to limit contact!  Finally, pray that Tuesday everything goes smoothly for the actual transplant - that Ross isn't in too much pain post- "harvesting" and that his stem cells enter AJ without a hitch.  Thanks.

We know this is long, but one final thing: this morning Andrew wrote the names of everyone who has reached out and supported or encouraged us in some way.  He wrote nearly 100 names!  And those didn't include many I've heard from!  Incredible.  It made us think of Galatians 6:2 where Paul urges members of the church there to carry each other's burdens.  We are totally overwhelmed with gratitude by how so many in our community and beyond are doing just that.

Day Negative 3

"AJ's the greatest!"  When we were dating, Andrew's brothers used to tease me when I said this. But today I can honestly say AJ's the greatest. He woke up to a ton of nausea but rallied, intent on finding me a place to swim. Together we checked out a local YMCA that will be perfect for my swimming addiction. I have to drive through a bit of a sketchy area to get there (which is pretty much the case in all directions surrounding Hopkins). But if I get I trouble, I can always pull into the "Sought Out Redeemed Hope Center and Church" that I drive right by. That made us both smile.
Back to AJ - we got him on stronger anti-nausea meds and they make him sleepy, so he's off to bed. Luckily, he still has a voracious appetite!
We may not have much to report over the weekend. Chemo continues for about 3 hrs both Sat and Sun. We expect increased fatigue. Monday will be the next big day when AJ has total body irradiation (sounds scary, right?) and all of his immediate family arrives (sounds a bit less scary, right?).
Again, we cannot say enough thanks to all who are helping out on the home front! I sound like a broken record, but we couldn't do this without you all.

Day Negative 4: Holding Steady

Andrew still feels pretty good.  But we both know what's coming and that this might be the last night he feels like himself.  This looming shadow makes it hard to enjoy the great weather and relatively "easy & quick" treatment days (3 hours or so, in total). However, we did spend a lot of the day outside and enjoyed watching dusk come from a few adirondack chairs in the front garden of our "hotel."  It kinda sorta felt like the Greenbrier, especially when Andrew said, "Hmm. I wonder what's taking the waitress so long?"  Sigh.
For me (CJ), technology has been the bane of my existence today.  This morning I could not connect to the internet from my work computer.  Now I can ONLY connect through our Remote Access which is slow and clumsy if I'm not trying to access work documents.  Weird. And I lost a long email I wrote at the hospital this afternoon.  Little things that seem like huge hurdles.  Thankfully, Andrew has had no such problems and has been able to continue working, part time at least, this week.
But all in all things are proceeding according to plan.  Andrew looks great and we both commented (in a good way) on how we're spending a lot of time together.  At the same time, it's so quiet here in our apartment, especially in the evening, without the kids and Rocko bouncing around - we miss everybody!  We're sad not to be at the high school's Back to School Night tonight, but we're thrilled that the reports from home show the kids and my parents actually thriving!  Thanks to so many of you that are helping to make that happen.  We are so blessed!  And maybe AJ will still feel good tomorrow and we'll get to end another day in the garden in this fabulous weather.

Day Negative 5

It's late so here's a quick update. Andrew tolerated the first day of chemo well. I navigated a downtown Whole Foods Market to get dinner. We moved into our "suite" which is super convenient, comfortable (although a bit cramped), and weirdly quiet. Here's AJ watching Nats highlights.
So on balance, prayers were answered and we're ready to take on tomorrow. Thanks!

Day Negative 6

Today Andrew got his "Hickman Catheter" put in. This line into his blood stream will be used from now on to give Andrew chemo and eventually, Ross's bone marrow.  While it is an "easy" procedure - 10 minutes done by a physician's assistant - Andrew is now sore.  Worse, as long as he has it in, he cannot do any repetitive motion.  No tennis!  (No vacuuming either, although no worries there!)
Andrew begins chemo to suppress his immune system tomorrow.  We also move into patient housing tomorrow.  While we've been very comfortable at a downtown hotel, it will be nice to be right across the street from the hospital and to have a kitchenette.
We've definitely been capitalizing on Baltimore's great fresh seafood.  Once AJ's blood counts are low (i.e. his immune system is weak), he will not be able to eat "dicey" food like sushi or shellfish or steak tartare. Anyway, this has meant some great meals.
So, prayers for tomorrow include 1) that AJ would tolerate the first day of chemo well, 2) that the move into patient housing is smooth and not too disappointing (since we wanted an apartment, not a studio)  and 3) that AJ doesn't have any complications from today's procedure (and that he's not too sore!).  Thanks for your prayers.  We hope to be "settled" soon.

Day Negative 7

Well, we are here in Baltimore and it is T minus 7 days until Andrew's transplant.  It was a long and sometimes frustrating day.  When you arrive, you get a schedule, which listed various appointments from 11 to 2, and yet no one seems concerned to follow the schedule.  We would've been fine with this, except that the US Open finals were on at 4pm and we didn't leave the hospital until well after 6!

AJ's "simulation" bed

Today was all about final paperwork and preparations.  We first went to visit the team responsible for Andrew's "Total Body Irradiation."  (In addition to 5 days of chemo, AJ has to have one "zap" of radiation next Monday to pave the way for his brother's bone marrow.)  I'm not sure what we were expecting, but thankfully, there was no radiation involved.   The attending white-haired physicist (who looked like someone who could've worked on the A-bomb) did some measurements while AJ lay very still to calculate the exact intensity of the radiation needed to suppress his immune system. The bed was narrow and short, prompting Andrew to say, "I haven't seen a bed this short since I was a high school exchange student in Panama."
With long delays at every turn, we were exceedingly late for our afternoon meeting with one of the doctors where we signed our consent forms for all of these complicated procedures.  Then it was on to teaching me (CJ) how to care for Andrew's new catheter, which will be inserted tomorrow morning. Needless to say, we did not have a lot of bandwidth to absorb everything at this point!
We're still struggling to come to grips with the fact that we're here for a bone marrow transplant and the reality of what's to come in the days ahead.  Not easy...Thanks to everyone for the great emails, texts, voicemails and gifts.  Our departure this morning wasn't as smooth as we would've liked, but we got here.  We're way behind on acknowledging it all, but please know - thank you, thank you!!

A Surprise Visit from some Duke Mates

It was awesome to learn that four of my best buds from college were coming to Falls Church to hang with me this past weekend, all the way from Philly, Charlotte, Dallas and LA.  Following a Friday evening feast at Ruth's Chris Steak House, we headed out Saturday morning to Shenandoah country for a hike, mixed in with some frisbee and lots of reminiscing about the old days.  Nice to enjoy a chunk of time so far away from present troubles.  Continuing to feel incredibly blessed by friends near and far.

Sky Meadows, VA

Going back to our visit to Hopkins, we saw Dr. Jones there on Thursday afternoon, after all the test results came in.  He reported that I passed all the tests and am "strong as a horse" and then added "…except for the lymphoma", which we agreed was a pretty big exception.   Still hard to get our heads - and especially our hearts - completely around what awaits us in September but we're doing our best both to take each day as it comes and to keep a long-term perspective, reminding ourselves that we're in great hands and have much reason for hope.  

As for what lies ahead, Christine and I will be heading up to Baltimore on September 10th to get started with what's called "preparatory treatment" from the 11th until the 17th, which mainly consists of chemo and radiation to flatten my immune system and clear the way for the stem cells harvested from my brother to take hold in my body and develop into a whole new immune system that will be more effective in uprooting my cancer.  The actual transplant will take place on the 18th followed by a precarious stretch of a few weeks during which I'll be especially vulnerable to infections and gradually bouncing back from it all.  If all goes well, I could be released in mid October and commute to Baltimore 3x/week for further monitoring and treatment.  If there are complications, I could be there 24/7 into November.  

Meanwhile, Christine's parents will be holding down the fort with our kids here at home.  Christine will travel back and forth from time to time to have some time with them as well and I expect to be in good touch via skype and phone.  My mom will be helping out as well at Hopkins, making sure there are no gaps in care up there.  And so many of you have offered to help in one way or another.  For now, we don't seem to need much, just your prayers and your patience as we are stressed organizing things here in Falls Church. For those of you who are local, you may join our "The Jones Helping Hands" website.

Christine & her parents will be soon adding ways you all can support both us and the kids & her parents in September and October. Again, thanks to all of you for your emails, texts, phone calls, etc.  We don't want to be walking this road.  But having all of you to support us makes it a ton easier.  

Lessons Learned

Last night we had a great seafood dinner out in Federal Hill and a stroll around the Inner Harbor. It felt (almost) as if we'd gotten away from all of this. But today we're back at the Hospital for more tests and consults.  Here is what we're learning:
1) Andrew's "mini" transplant will be hard on him, but not as debilitating one might expect.  God willing, he'll be back "home" (to temp housing) within hours of receiving Ross's stem cells.  Wow!
2) The outpatient clinic where AJ will check in each day for chemo, blood, meds, etc. is rather underwhelming. Tight quarters and limited amenities.
2.5) The long term patient housing is great. We can't get in to see it this trip, but we've heard great things from other patients.
3) There is an exercise room with a stationary bike for AJ to use in isolation after the transplant. They encourage exercise for both patient and caregiver and make it easy to be active.
4) The hospital is COLD! I know germs like hot and moist environments, but so do I!
5) Expect boredom. In fact, we have that now as we wait for these various appointments and try to work in these stretches from chairs in the lobby.
6) Our schedule is set!  The whole transplant process begins for us on Monday September 10th, which is when we'll temporarily move to Baltimore.
That's all for now. I'll let AJ weigh in all of this after we meet with the doctors this afternoon.

Here at Hopkins

The big news this morning is that the guest wireless here at Johns Hopkins works enough for Andrew to respond to emails, for me to watch a video on Amazon Prime, and for us to post on the blog!
Today AJ has already undergone his least favorite medical procedures: giving up 17 (!) vials of blood and having a bone marrow biopsy. He has just one more test today, one of two to test his heart.  Tomorrow we have a Bone Marrow Transplant class, a different heart test, and a consult with the doctors. It's a lot and frankly, overwhelming. But we're staying in Baltimore tonight thanks to AJ's mom who is with the kids in Falls Church.  Our other goals are to tour the housing options and to eat seafood tonight at the Inner Harbor. We'll have more info on what the whole transplant process entails after tomorrow. Til then, thanks for all the great notes, calls, emails, etc!  Even if we don't respond we love hearing from you all! And thanks for keeping us in your prayers.

Ocean Bathing

After a much-longer-than-expected drive back to Falls Church today, we're back home from our beach week on the Outer Banks. For our family, it's a highlight every year and this year was no exception. We had beautiful weather, complete with sunrises on the ocean side, sunsets on the sound side and starry nights overhead. The ocean water and sea breeze were as therapeutic as ever and we soaked it all up in much the same way as we do the air on our hikes through the woods.
The older kids were disappointed by the absence of big waves but, with all the turbulence in our lives of late, Christine and I enjoyed the peace and calm. While not surprisingly the time passed too fast, it was a much needed respite from all the weighty medical news and decisions on top of our normal busy routines.

Darcy with her youngest cousin, Trevor

With the bone marrow transplant scheduled for September 18th (just a month away!), the reality of it is sinking in, along with all the preparations - on the home and work fronts - that need to be made.  On Wednesday & Thursday this week I'll be at Hopkins for extensive testing.  Christine and I will also attend a class to prepare us for what lies ahead.  We hope to know a lot more about what to expect by the end of the week.  As always, we continuing to feel blessed by friends and family reaching out to us daily and trusting in God's provision. Thank you!

Ev fighting the waves

The Long and Winding Road Straightens

The Rwandan roads always zig & zag

So, ever since the June PET scan result that showed the cancer growing back right on the heels of the first chemo regimen, the trek has been more arduous, akin to a switchback trail up a steep incline.  Against a challenging backdrop of work demands and kids on summer break, the zigs and zags have revolved around a) whether the bone marrow transplant from a suitable donor is really necessary, given the risks, and b) assuming it is, who's the best donor for me.

Christine and I have struggled, often late into the night or in the wee hours of the morning, to get our heads around the medical rationale for the recommended transplant.  Here's how I would describe it.  Imagine a giant weed in the garden that one yanks out periodically but without ever getting deep enough underground to remove the roots.  Essentially this is what's happening with my cancer.  The drugs, in combination with my immune system, are succeeding in removing the cancer from the visible landscape but not in getting beneath the surface.  As such, the cancer is sure to come back and, given its aggressive nature, sooner rather than later.  Yesterday's scan results showed the the cancer had been knocked back to negligible levels again after the latest two rounds of more intense chemo but, alas, the transplant remains necessary to fully uproot it.

A few blogs ago, I wrote about the competition between my brothers to see who would emerge as the best stem cell donor for me.  And the winner was Regg! I mean Ross!  It was a photo finish, in other words, not quite the crystal clear outcome we were praying for.  Regg is an identical tissue match while Ross is a half match.  What put Ross in first was the fact that his cells show the potential to bind more effectively to Rituxan, the key cancer-fighting drug they'll be administering to me in this next phase.  With other experts in the cancer field concurring, the team at Hopkins stressed to us that any increased risks of a half match are manageable and that the better Rituxan match gives us a higher probability of taking out the weed at the roots, so to speak.  The progression-free survival numbers that they're getting with stronger Rituxan match donors for patients with my kind of ("tough") lymphoma are very encouraging.

Having interrogated the proposed treatment plan to the best of our (limited) ability, we've somehow felt a growing peace about the road ahead, sensing that God's got it.  As Christine blogged on Thursday, we've taken Proverbs 3:5-6 to heart, leaning on God and not our own imperfect and less-than-satisfying understanding and trusting that the path ahead will be straight and ultimately bring complete, lasting healing.  And we continue to marvel at the excellent medical care that we're getting at Hopkins and all the love that our family and friends continue to pour out on us.  You all are amazing.  Thank you from deep down for trekking with us and lightening our load in so many ways.

Today's the Scan!

Andrew just left the house for his pet scan in Baltimore. His verse today is Proverbs 3:5-6. Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. 

I think this is perfectly apt as Andrew meets with the doctor at 2:30pm to discuss the decision of the bone marrow donor and then the next steps of the treatment and beyond. I mean, really, are we ever fully going to understand all this complexity?? Best to remember that (only) God's understanding is perfect. It doesn't hurt to have straight paths at this juncture as well.  Thanks for your thoughts and prayers today. We'll let you know when we get results.

Pet scan this week!

Cheering on the Nationals!

Andrew and Evan are spending 24 hours in DC together.  They've seen the Nationals beat the Marlins, eaten pizza, and will visit the Spy Museum this morning.  We've done this with all the kids as they become "tweens", spent some one-on-one time with them doing things they love.
I'm thankful that Andrew is so intentional about spending time with his family!  But it does mean that this week is especially crazy busy for him. The long-awaited pet scan is this Thursday, August 9th.  Andrew will have a morning scan and the wait to see the doctor in the afternoon.  (Why can't these two appointments be closer together??) We're not expecting results from the pet scan.  This consultation is for Andrew to talk over all of the consequences of the bone marrow donor choice.  Since Andrew is participating in a trial that is looking at pretty innovative stuff, we want to have all the data we can before moving forward.
Please pray for Andrew as he meets with the doctor (I cannot be there).  We are also praying for clear pet scan results that show the cancer has been beaten back, has not spread, and that Andrew will not need more chemo this summer.

Introducing Forest Bathing to Falls Church Friends

We spent Sunday afternoon back at one of our favorite hikes: Bull Run Mountain.  But this time we had the company of four other families!  Two of Darcy's friends leave the country this weekend so this was a last group activity before everyone scatters.  AJ & I (CJ) loved sharing one of our favorite vistas with everyone.  Our kids can be less than enthusiastic about hiking, so it was a real treat to have four of us smiling at the top of this mountain.  (Nate is at cross country camp.)

After the hike we went to one of Andrew's favorite restaurants and I was surprised with a cake to celebrate my upcoming birthday. It's a good reminder to celebrate each day as we wait for the results of the August 9th pet scan to determine our fall schedule.
It's not easy waiting, since there is so much we cannot plan until we know the exact date of Andrew's transplant.  But it's been easier than it might have, given Andrew's good health, exciting & meaningful work, and the company of good friends. As I write this, Andrew is en route to Seattle for a short, but action-packed, business trip.
Meanwhile, the moms & daughters are booking pedicures for tomorrow.  It's much easier to "take one day at a time" when we remember to celebrate the present.

Washing the sand out of my hair

Evening on the beach

Evan and I (CJ) spent 24+ hours at the beach yesterday.  We joined Darcy and her friends on their annual overnight to Rehobeth Beach. We all had a blast in the waves, on the rides at Funland, on the boardwalk, and just being in Delaware (my home state.) I hadn't realized how much I needed a break!  I always love the beach and I especially love that out of control feeling when a wave tosses you all around.  This morning I still had sand in my hair.  I need to remember that I like this feeling when I feel tossed around by all this cancer stuff!
We are getting closer to some clarity around the choice of a donor so thanks to everyone for prayer about that!  I also just realized that even some of our closest friends don't know all that the upcoming bone marrow transplant will entail.  Assuming we go forward, Andrew and his caregiver (mostly me but also his mother) will need to be living in Baltimore adjacent to the hospital for 6-8 weeks.   Much of this time (hopefully), Andrew will be IPOP - Inpatient/Outpatient Care Continuum.  This means that if he is healthy enough he will be sleeping in our temporary housing and not in the hospital.  We are to be "partners [with the medical team] in IPOP."  This is definitely an ideal situation as we'll be together as Andrew recovers.  But I would like to remind everyone that I did not go to nursing school and that AJ & I both get queasy at the thought of caring for a long term catheter!!  My parents will come and stay with our kids in Falls Church, but even with their great parenting expertise, this will be a stressful time all around.  I'll want to be two places at once and Andrew will want only to be healed. 
But honestly, we are not thinking that far ahead for now.  AJ is feeling good (his cold is gone) and work is busy.  We've had more fun visitors to distract us.  The next big "event" is Andrew's upcoming pet scan on August 9th when we'll learn if he is ready to proceed with the transplant.  Don't worry, when we do start planning ahead, we'll be sure to let you know how you can help.  Many of you continue to do so daily without our prompting and Andrew & I remain immensely grateful.

Draining Days

I (AJ) made it through another week of chemo, though I'm feeling it a bit more than last time due to a cold that came on mid-week and is showing no signs of abating.  The body's working overtime, that's for sure!  Meanwhile, we got news as well regarding my two brothers still in the running for the bone marrow transplant.  Although we hoped one would be the ideal candidate - a full tissue match plus a strong Rituxan match - to make our decision a easy one -  alas, we were disappointed.  So instead of a "no-brainer," we got a "brain-drainer."  

We're still gathering and processing information, as best as our non-medical minds can do it, to reach a firm decision on what next.    It's been an exhausting last few days here, all around.  For our praying friends and family, please pray for 1) rapid recovery and strength for me and 2) wisdom and clear direction for all of us as to what to do next, and specifically as to whether to continue on the path recommended by Hopkins or adjust course in some way.

Hitting for the Cycle

Could chemo fatigue be selective?  Yesterday Andrew had tons of energy during the day, but come 9:30pm as it's time to clean up the kitchen, he simply faded! Of course we'd had a wonderfully full day for a Saturday with "no plans." Andrew warmed up Nate for a tennis tournament, whacking balls as if he's the U16 competitor.  And best of all we had a last minute visit from one of Andrew's dearest childhood friends, Caroline, who came to Falls Church for 24 hrs. Caroline reconnected us with another Darien High School friend, Chris, who came over for a leisurely lunch!  Our kids loved hearing funny stories from their dad's youth.

Chris is an old baseball teammate and brought Andrew this game ball (which Chris caught at a Mets game) to encourage him to knock the cancer out of the park this time around!  As Chris said, "When we were kids we were always carrying balls around with us."  This one will come with us to Baltimore as a great reminder of all of our friends who are rooting for us in the stands!

*For those of you who don't know baseball, here's what "hitting for the cycle" means.

Keeping up with the Joneses: Competition is in our blood!

Now that it appears my body is tolerating the new, more aggressive chemo regimen pretty well, and assuming the drugs are "quieting" the cancer, the big unknown in this next phase of my treatment is who will emerge as the bone marrow transplant donor of choice.  As many of you know, my three brothers all sent in their blood samples a couple weeks ago and, with zero prompting, each predicted that his sample would prove superior to that of the others.  The "trash talking" has been relentless and I have to say I've been in awe of my brothers' desire to beat out the competition and win the prize.  Wait a minute!  The prize?  The opportunity to go under general anesthesia and have bone marrow scooped out of the back of their left and right hips?  I love these guys!  What would I do without them?

After two weeks of suspense, the results just came in and here's where we stand.  Regg is a full (tissue type) match. Ross is a half match.  And Gordon was less than a half match and has been ruled out.  The transplant coordinator at Johns Hopkins told me how surprised she was that Gordon seemed so genuinely disappointed and how impressed she is by how all the brothers want to do anything and everything they can to help.  So, on we go…  Regg and Ross's samples are now being tested for how well their stem cells are likely to work in tandem with the cancer-fighting drug Rituxan to completely root out my cancer.  Once those results are in - probably next week - we'll be able to come to a final decision on the best donor for me.

Needless to say, Christine and I are incredibly thankful for family, and the fact that we still have at least two brothers in the running as they look for the best fit for me and my condition. Stay tuned!

Celebrating Independence Day with a Morning Forest Bath!

Happy July 4th - Christine, Rocko and I rose early on this big US holiday and headed out to Great Falls National Park to hike along the cliffs looking out over the Potomac River.  Check out the photos!

It was quiet and peaceful - we even surprised a young fawn at the river's edge early in the hike - and I felt energized right through the two hours we were out there.  Thankfully, I'm going strong in this week following treatment, no doubt buoyed by the time with family (my mom, brothers, and many more) this past weekend in Michigan.  Continuing to work and enjoying time with Christine and Darcy - mostly indoors, away from the extreme heat and humidity - with the boys at camp in the Adirondacks through this week.

Even as we celebrate Independence Day and the fact I'm feeling so strong, we continue to be struck by how dependent we are on others.  The accomplished, dedicated doctors and nurses taking care of me, of course, but also our loving family and friends who are picking us up every day.  Out of the blue in recent days, so many of you have reached out and surprised us with a variety of gifts and encouraging words.  We're so grateful to be knit together with all of you and are celebrating not only our independence but also our interdependence today.

The Best Medicine

Somehow we dodged Friday's Derecho storm by attending a Jones family wedding in Grand Rapids, MI.  Dancing and laughing with the Jones (and Fuchs) clan was the best medicine Andrew could have asked for!
As for today, we've been living the life of Riley: getting on a non-stop flight back that put us into DC 3 hours earlier than scheduled; having tuna steaks defrosted perfectly in our power-outage chest freezer; grilling and then eating in the lingering light of summer evening; and finally having the power return just as we finished eating.  We're banking on the good luck continuing with Andrew avoiding any adverse side effects from Friday's shot to boost his white blood cells. For now we are grateful for small mercies: electricity, family, friends, good food and good health.

One round down, one (hopefully) to go!

Just a quick update to say that after four days of intense chemo, Andrew's blood work looks good.  He doesn't have to wear a mask on the plane to Grand Rapids this afternoon!  We're thankful for small mercies.... His counts are low but in the "normal" range.  Amazing.  Andrew also has lost some of the excess water weight.  He feels tired and foggy and alternatively nauseous and starving, but he's hanging in there incredibly well.  Andrew's reward is that he gets two weeks off.  Round two begins on July 16th.

AM Forecast: more side effects to come

Today (Thurs) is the fourth day of treatment and the last for this cycle!  Unfortunately along with a mjor heat wave, the expected side effects have arrived! Andrew's feeling quite "blah" despite the anti-nausea medicine he's been taking.  He also has gained weight due to the excessive fluids he is receiving as part of the chemo protocol.  While I (CJ) like him 10lbs+, it does add to AJ's discomfort. We're heading to a family wedding in Michigan this weekend and while we're thrilled AJ is allowed to go, we are praying that he has the energy to be able to enjoy being there. 
Although we sound like a broken record, once again we say thanks for all the kindnesses, big and small, that you've extended to us. "The world is your canvas for kindness," was last week's challenge in the sermon at church and it seems that we've been that canvas for many of you!

So far so good...

AJ's Tuesday Meds

Yesterday's chemo session went as well as expected. Andrew still feels great, carrying on as usual including working on his laptop, and none of the expected side effects have set in yet. Today Andrew receives some new drugs, ones that are heavier duty than ones he's had in the past, so we're waiting to see what (if any) side effects AJ has.  I (CJ) am relatively optimistic that he will tolerate these well, based on his past track record.  In fact we're hoping to play tennis together this evening in the perfect weather we're experiencing here. But along with the new meds they are pumping in tons of liquid into AJ's bloodstream, so we're ready for plan B (watching Darcy play tennis) if AJ's not up to it.  Thanks for your messages, emails, thoughts & prayers.  So far, so good....

The Trek Continues

A favorite game...

Taking the plunge

Christine, Nate, Darcy, Evan and I had a great 3-day get-away to the Shenandoahs this past week, including family time tubing, canoeing and kayaking on the river bordering the old barn house we rented, a trip to the Luray (VA) Caverns, and plenty of down time.  All good for rest, reflection and appreciating the bonds we share as a family, especially heading into this next phase of treatment. Here's what's in store:

AJ in the chemo chair.... not much fun for 7 hrs.

Starting this week until late July/ early August , I'll undergo 2 to 3 more rounds of chemo, similar to what I went through before but more intense stuff to beat back the cancer as much as possible.  Second, somewhere in the August to October period, depending on how the summer chemo goes, I'll spend 6-8 weeks in residence at Johns Hopkins to undergo a bone marrow transplant (donated by one of my brothers, most likely).  The idea is that the blood cells from a donor will attack the (greatly weakened) cancer cells that remain in my body better and more decisively than my own can.  So, it's basically bringing in a new battalion of cancer-fighting cells to finish the enemy off.  We're told the odds remain pretty good that I'll be cured.  At the same time, there's some increased risk of serious side-effects.  It's scary stuff but we remain full of hope.

In terms of how I'm feeling, physically, I feel better than I have in a long time - playing tennis, picking up the pace on long bike rides, and eating and sleeping well.  Yet we know the cancer's growing back and that we have to face that dark, discouraging fact.  As I looked out at the view from the back of the barn house in Luray, I could see the top of the mountains in the foreground and then beyond, at a greater distance, some of the higher peaks in the Shenandoahs.  The view made me think of this trek we've been on battling my lymphoma.  I'm sure many of you have experienced that feeling of closing in on what appears to be the end destination on a long, arduous hike and then realizing, as you round the next bend or come to a clearing, that you actually have to go even farther - to the top of that next peak or ridge before you can declare victory.  Well that sums up how we feel.  No rest for the weary.  The trek goes on.

We're doing our best to prepare for this next (and hopefully final) leg of our journey.  Already so many of you have reached out to us and offered words of encouragement and tangible support, all of which is greatly appreciated.  We continue to be incredibly thankful to be in community with so many incredibly loving friends and family members.  We also know how blessed we are to have access to the medical expertise and care at Hopkins, certainly among the best in the world.  For our praying friends, please pray for our courage, strength and endurance - individually and as a family - during this tough stretch ahead, and for an even deeper sense of God's presence in the midst of it all.  Trusting that the ultimate outcome will be good. 

Meanwhile, Nate & Ev are at camp for 2 weeks. Here's Ev with friends on the first day.

 

Off to the Mountains!

Andrew is now set to begin chemo on June 25th.  He feels great now, so we're taking a last minute trip to the mountains!  We'll spend three days in a barn on a river,  sitting in the hot tub after canoe rides.  We plan to visit some caverns and cook s'mores over the fire-pit. Even Rocko, our chocolate lab gets to come! The internet there is spotty (if it exists at all) and if we're lucky, we'll be out of cell phone range as well.  It will be a real get away.
The last few days have been a whirlwind of activity.  We've now had 3 "second opinions" that all concur with our doctor's plan of treatment at Hopkins.  (More on that when we return.)  Every minor decision seems hard to make - and there have been a surprising amount of decisions to make - from how to get that email for the first cousin in CO to where we should go for brunch for Father's Day.  Coordinating the list of potential donors for AJ's bone marrow transplant has taken more time that expected. 
Meanwhile, everyone seems to have a story of a miraculous cancer cure  - where a friend or family member overcame great odds to survive.  While it is encouraging to hear these, I (CJ) cannot decide if in the end they make me feel better or worse!  We know that God has a plan for OUR story and we're  praying that 1) it involves total healing and 2) we have the grace, faith and trust to follow Him as he leads us, even though the path will be hard.  Thanks everyone for reaching out so much already with food, books, calls, emails, texts and prayers.