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.