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!!