Five Years On

We're still regularly "Forest Bathing."

Today marks 5 years since my bone marrow transplant – cancer free for 5 years.  Wow!  I’m so thankful.  In some ways, it feels like a short time ago.  I remember well how shocked and helpless I felt, suddenly and utterly dependent on others.  I marvel at the top-flight medical care the team at Johns Hopkins provided, and how most people in the world don’t have access to such care.  I smile when I think of my brothers fighting over who would be my donor, countless prayer warriors surrounding me, and family, friends and neighbors supporting my family in myriad ways.

2012 was incredibly draining, but also incredibly reassuring, soaking up the​ ​sacrificial love of so many around us.  What an amazing demonstration of humanity at our best.  And out of it all I emerged, a bit weathered physically but remade – AJ 2.0!  Not only a new lease on life but a new perspective on life – and what really matters.  I think back on 2012 a lot and, though I wouldn’t wish it on anyone else, I give thanks for how it shaped me . . . and taught me to cherish and pour into my marriage, my family, and my friends.  Deep down, I want to love back for all the love received.

Life post-2012 hasn’t been a walk in the park, mind you.  AJ 2.0 came with some baggage, you might say.  I’ve battled chronic congestion and one year out, my tear ducts clogged up and never reopened (next week I’ll have surgery to replace them).  And the next year, I was diagnosed with a deficient immune system, one that can’t produce antibodies to fight off infections.  While the tear ducts may be replaceable, there appears to be no way to fix my immunodeficiency. 

Instead, I get infused every week with immunoglobulin to keep my counts within the normal range, and I can’t travel to much of the world, including most of Africa where I have lived and focused professionally for decades.  The weekly infusion is administered at home, pumped into my body through two tubes.  I sense that it’s God’s way of reminding me of my human imperfections, my selfish tendencies that get in the way of life as it should be.  I suppose I could feel sorry for myself but I don’t – not a chance!  Once again, I’m among the privileged few with access to this life-giving treatment. 

So, onward!  Each day, I try to remind myself of how grateful I am to be alive and kicking, to have such a beautiful family, good friends, and generous community – and meaningful work to do, with so many other​s​ who care about human dignity and social justice.  Christine could tell you how I used to be a long-range planner – what are our goals this year, over the next 5 years, etc.  I don’t do much of that any more.  I try to live in the moment, savoring what each day brings and, even when they’re full of frustrations – on ​I-​495, at work, on the tennis court – I count myself blessed.  Connected.  Loved.  Life is good!  Thanks for being a part of it. - Andrew

3 Years Still Clean!

Who knew that 3 years was such a milestone?  Apparently it is.  And Andrew has made it!  A CT scan up at Johns Hopkins on Thursday September 10th showed no cancer.  From here on out, Andrew only needs blood work every 6 months.  Dr. (Richard) Jones says Andrew looks great.  I, of course, agree.
We're still working through Andrew's immunodeficiency issues.  The weekly infusions of immunoglobulin continue to plague us.  And although Andrew has had all his "childhood" immunizations, as one doctor put it, "there are no workers in the factory," to turn those vaccines into actual antibodies.  If Andrew were to pick up a dangerous pathogen in Africa, his body might not be able to fend it off.  For now he is grounded.
This will be the next mountain to climb: figuring out how, when and where to travel internationally. In the meantime we remain super grateful for all we have right here at home.

We did it! (On our own)

On April 17, we went back to Hopkins to learn how to administer the weekly infusions.  We got a lot of information but the bottom line was:  you can do this; it's your treatment; it can fit into your routine in whatever way works best for you.  Sure it was scary and even painful for AJ, but we came away equipped for the task.
Last night we gathered our resolve and administered it on our own.  We quickly realized our memory is not what it used to be as we tried to remember the procedure.  "Wait, these directions are useless!" "Arrg, why is the medicine leaking out of the syringe!" "Yikes, is that blood?"  If it hadn't been us, I (CJ) would have said I was watching a dumb sitcom with the two hapless characters fumbling through a seemingly impossible situation.  (I'm sure it didn't help that I was in new 4" heels that I am breaking in for a few dress-up events next month!)
But today Andrew feels ok and even hit some good balls on the tennis court. Next week we will be back up at Hopkins for a scan and to get a bronchoscopy to find out once and for all (?) what the infection is that has plagued Andrew for nearly 6 months now. As they say in Swahili: "Slowly by slowly" we are getting to the bottom of this.  Thanks for your prayers and your willingness to listen!

You really don't have a choice....

Well, this morning we got a path forward, just as we were hoping & praying for. That's the good news. The not so great news is that Andrew's body can't produce antibodies to fight against the flu and pneumonia. He'll need to receive antibodies (gammaglobulin). He can do this via IV infusion monthly or he can self-administer weekly at home. More on this later after we talk to the nurse practitioner.  Odds are that he'll have to do this the rest of his life. 

When Andrew asked the doctor if there were any alternatives, we got a quick, curt, "No." Followed by: "if you don't do this you will either get a chronic lung disease or a severe infection that will go to your blood then the brain or a bone that would cause a huge problem for you!"  Oh, ok!

Boosting Andrew's antibodies means potentially eliminating the recurring chronic infections and inflammation that have plagued AJ for the past couple years. 

Oh and for those of you who want to blame Ross, this seems to be more related to B Cell Lymphoma than a bone marrow transplant. 

It's easy to be upbeat as we sit here on Chincoteague Island at a friend's home devouring crabs and the beautiful views! Thanks for your prayers. They have been answered.

Immuno-what??

Thirty months post transplant and Andrew remains cancer-free!  Hallelujah!  However, his weakened immune system continues to battle against all sorts of respiratory ailments. And while Andrew can bike to his office in Silver Spring and hang with former junior national (and international) tennis buddies, he still doesn't feel 100%.  The chronic cough and blocked tear ducts are getting old!
After his last (clear) scan, one of his oncologists noticed that his immunoglobulin levels are low.  He has been for more thorough blood work and we will meet with a Johns Hopkins Immunologist on April 3rd  (Good Friday!)
It would be amazing if this explains why his immune system has been unable to fight off infections! And maybe there will be a clear remedy!  We hope this is a breakthrough after so many months of waiting for "allergies" to dissipate.
Please join us in praying for a path forward.  (And for a fun date day post doctor appointment - we haven't had one in a while!)

(Nearly) two years!

This Thursday (9/18) will be the 2 year birthday of Andrew's new & improved immune system. We're headed to Baltimore for a scan and an appointment with Dr. Jones, AJ's doctor at Hopkins. 

AJ had a scan in late June, which was completely clear, so we're fully expecting another all-clear this week. But as always, we appreciate your continued prayers.

Final! AJ Travels for Work!

Andrew and Darcy en route to Kenya!

In February, Andrew got the all clear to travel to Nigeria!  Finally, he gets to go back to the field.  Nigeria isn't an easy trip.  He wasn't at a seaside resort for a "conference."  But it was a great trip nonetheless, connecting with team members on the ground and visiting one of the schools where they will be using Discovery videos!
In March he has two trips planned.  Today he is flying to Kenya and we decided that this was a great opportunity for Darcy to join him.  She hasn't been back to Kenya since '06! Later this month he will go back to Nigeria and also visit Ghana, the third country where a new project is putting Discovery media in hundreds of schools!
We are thrilled for Andrew.  He'll have another (routine?) scan at the beginning of April.  But for now that seems (wonderfully) distant.
Thanks for your thoughts and prayers.