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.