One round down, one (hopefully) to go!

Just a quick update to say that after four days of intense chemo, Andrew's blood work looks good.  He doesn't have to wear a mask on the plane to Grand Rapids this afternoon!  We're thankful for small mercies.... His counts are low but in the "normal" range.  Amazing.  Andrew also has lost some of the excess water weight.  He feels tired and foggy and alternatively nauseous and starving, but he's hanging in there incredibly well.  Andrew's reward is that he gets two weeks off.  Round two begins on July 16th.

AM Forecast: more side effects to come

Today (Thurs) is the fourth day of treatment and the last for this cycle!  Unfortunately along with a mjor heat wave, the expected side effects have arrived! Andrew's feeling quite "blah" despite the anti-nausea medicine he's been taking.  He also has gained weight due to the excessive fluids he is receiving as part of the chemo protocol.  While I (CJ) like him 10lbs+, it does add to AJ's discomfort. We're heading to a family wedding in Michigan this weekend and while we're thrilled AJ is allowed to go, we are praying that he has the energy to be able to enjoy being there. 
Although we sound like a broken record, once again we say thanks for all the kindnesses, big and small, that you've extended to us. "The world is your canvas for kindness," was last week's challenge in the sermon at church and it seems that we've been that canvas for many of you!

So far so good...

AJ's Tuesday Meds

Yesterday's chemo session went as well as expected. Andrew still feels great, carrying on as usual including working on his laptop, and none of the expected side effects have set in yet. Today Andrew receives some new drugs, ones that are heavier duty than ones he's had in the past, so we're waiting to see what (if any) side effects AJ has.  I (CJ) am relatively optimistic that he will tolerate these well, based on his past track record.  In fact we're hoping to play tennis together this evening in the perfect weather we're experiencing here. But along with the new meds they are pumping in tons of liquid into AJ's bloodstream, so we're ready for plan B (watching Darcy play tennis) if AJ's not up to it.  Thanks for your messages, emails, thoughts & prayers.  So far, so good....

The Trek Continues

A favorite game...

Taking the plunge

Christine, Nate, Darcy, Evan and I had a great 3-day get-away to the Shenandoahs this past week, including family time tubing, canoeing and kayaking on the river bordering the old barn house we rented, a trip to the Luray (VA) Caverns, and plenty of down time.  All good for rest, reflection and appreciating the bonds we share as a family, especially heading into this next phase of treatment. Here's what's in store:

AJ in the chemo chair.... not much fun for 7 hrs.

Starting this week until late July/ early August , I'll undergo 2 to 3 more rounds of chemo, similar to what I went through before but more intense stuff to beat back the cancer as much as possible.  Second, somewhere in the August to October period, depending on how the summer chemo goes, I'll spend 6-8 weeks in residence at Johns Hopkins to undergo a bone marrow transplant (donated by one of my brothers, most likely).  The idea is that the blood cells from a donor will attack the (greatly weakened) cancer cells that remain in my body better and more decisively than my own can.  So, it's basically bringing in a new battalion of cancer-fighting cells to finish the enemy off.  We're told the odds remain pretty good that I'll be cured.  At the same time, there's some increased risk of serious side-effects.  It's scary stuff but we remain full of hope.

In terms of how I'm feeling, physically, I feel better than I have in a long time - playing tennis, picking up the pace on long bike rides, and eating and sleeping well.  Yet we know the cancer's growing back and that we have to face that dark, discouraging fact.  As I looked out at the view from the back of the barn house in Luray, I could see the top of the mountains in the foreground and then beyond, at a greater distance, some of the higher peaks in the Shenandoahs.  The view made me think of this trek we've been on battling my lymphoma.  I'm sure many of you have experienced that feeling of closing in on what appears to be the end destination on a long, arduous hike and then realizing, as you round the next bend or come to a clearing, that you actually have to go even farther - to the top of that next peak or ridge before you can declare victory.  Well that sums up how we feel.  No rest for the weary.  The trek goes on.

We're doing our best to prepare for this next (and hopefully final) leg of our journey.  Already so many of you have reached out to us and offered words of encouragement and tangible support, all of which is greatly appreciated.  We continue to be incredibly thankful to be in community with so many incredibly loving friends and family members.  We also know how blessed we are to have access to the medical expertise and care at Hopkins, certainly among the best in the world.  For our praying friends, please pray for our courage, strength and endurance - individually and as a family - during this tough stretch ahead, and for an even deeper sense of God's presence in the midst of it all.  Trusting that the ultimate outcome will be good. 

Meanwhile, Nate & Ev are at camp for 2 weeks. Here's Ev with friends on the first day.

 

Off to the Mountains!

Andrew is now set to begin chemo on June 25th.  He feels great now, so we're taking a last minute trip to the mountains!  We'll spend three days in a barn on a river,  sitting in the hot tub after canoe rides.  We plan to visit some caverns and cook s'mores over the fire-pit. Even Rocko, our chocolate lab gets to come! The internet there is spotty (if it exists at all) and if we're lucky, we'll be out of cell phone range as well.  It will be a real get away.
The last few days have been a whirlwind of activity.  We've now had 3 "second opinions" that all concur with our doctor's plan of treatment at Hopkins.  (More on that when we return.)  Every minor decision seems hard to make - and there have been a surprising amount of decisions to make - from how to get that email for the first cousin in CO to where we should go for brunch for Father's Day.  Coordinating the list of potential donors for AJ's bone marrow transplant has taken more time that expected. 
Meanwhile, everyone seems to have a story of a miraculous cancer cure  - where a friend or family member overcame great odds to survive.  While it is encouraging to hear these, I (CJ) cannot decide if in the end they make me feel better or worse!  We know that God has a plan for OUR story and we're  praying that 1) it involves total healing and 2) we have the grace, faith and trust to follow Him as he leads us, even though the path will be hard.  Thanks everyone for reaching out so much already with food, books, calls, emails, texts and prayers. 

"Have a Great Summer..."

Just a quick post to let you know it will not be a "great summer" despite all the times I (CJ) have heard this in the past few days as school has ended.... We had a very informative meeting at Johns Hopkins on Thursday afternoon.  While we are still looking into second opinions, it seems clear that in the last five weeks the cancer has grown in size and intensity.  We're probably looking at 2-3 rounds of heavy duty chemo, a period of recovery, and then a bone marrow transplant.  No firm dates or details yet. Stay tuned and keep us in your thoughts and prayers.  This will not be fun.

Not the News We Were Hoping for

We got word this afternoon that the scan results this time around show more clearly that the cancer is still there and growing again in Andrew's chest.  Obviously a big blow as it means we'll need to go to heavier-duty therapy of some sort.  We're still absorbing the news and all that it implies.  Please pray for us as we try to process the results and determine the best course of action from here.  We will be meeting with the team at Johns Hopkins tomorrow afternoon to discuss and will update the blog thereafter.  In the midst of the disappointment, we trust that God is with us and will see us through whatever lies ahead.  One step at a time...

Persistence On and Off the Tennis Court

An exhausted Nate with his proud parents after the win!

Having returned from a great work trip to West Africa Thursday afternoon, I hopped in the car with Christine Friday AM and raced down to Radford, VA to see Nate and his Mason High School teammates vie for a 3rd straight state championship. They won! And Nate's tough 3-set victory clinched it for them. After splitting the 1st two sets, and falling behind 2-5 in the 3rd, Nate was determined and battled back to win in a tiebreaker. We are so proud of his steely resolve under pressure - he was not to be denied

For obvious reasons, with my repeat PET scan taking place on Monday, Nate's fighting spirit meant more than usual to me. Even though my body feels stronger and the wear and tear of the chemo is clearly easing, I still don't quite feel 100% in my chest and can't help but wonder whether the cancer still has a foothold in there. While I know it's out of my hands and ultimately in God's, and definitely draw deep courage and peace from that, I fear the beating my body would absorb with another, more intense round of therapy - and having to forgo family time and vacation plans this summer - if the news isn't good this week.

I appreciate everyone's well wishes and encouragement and, for our friends of faith, I ask for your prayers for decisive healing and, if the cancer's somehow alive and kicking, for clarity on the course of treatment going forward and perseverance as we continue to fight the good fight.