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.