Monday, September 20 – What would you do?

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It has been a question that we’ve spent a lot of time thinking about this week – how will we use this time? We know that, starting tomorrow, we’ll be entering a pretty tough stretch. To be honest, we are afraid of what this week will hold. But Heath responded really well to a lighter regimen last weekend, and so we’ve had a week that he hasn’t felt too poorly. Thus the question “In the calm before the storm, what do we do?” I wonder if you have had times in your life like this?

Martin Luther supposedly said (you can argue with the internet on the reliability of the quote, and some of the specific wording), “Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.” I’ve been thinking about that a lot this week. How do we live with boldness and courage, with compassion and hope? How do we tend to our daily responsibilities, but do so in light of what is to come?

It has been a really good week. A lot of the focus has been on making sure Heath built up a little reserve when the heavy duty meds hit him next week. We expect him to be sick and feel pretty poorly, not in the best condition to eat and drink. But over the past few weeks he hasn’t been too sick, which means he’s been able to eat and drink, LOTS of mac and cheese and gatorade, in an attempt to put on a few pounds. We have been successful in that regard.

EB and Wilson went to school (but not too much, thanks to a power outage at Jordan High on Monday, and a day and a half as our Jewish brothers and sisters observed Yom Kippur). It was not an overly strenuous school week:) Tennis practice. Baseball practice. Some long evening dog walks. Heath has put some good energy into catching up on school work, too. I did a little bit of work, and my email traffic continues to decrease, thanks in large part to a gracious congregation and very competent staff. The saints of First Burlington are also doing so much so Carrie can focus on being present here.

As the week ended we also had time to spend with some wonderful people. Our friend Shelley came over for a porch visit on Thursday while I was with Wilson at baseball. Ella Brooks celebrated a friend’s birthday on Friday, then had the chance to go to Charlotte with Montreat friends for Saturday and Sunday. Wilson had a baseball game Saturday (playing a little catcher below). Heath and Carrie went to the game, along with Carrie’s parents. It almost felt normal as we had a sandwich and watched the joys of South Durham LIttle League. I was able to assist with the funeral for the mother of a cherished colleague. Saturday night, thanks to some friends, Wilson and I went to the Duke/Northwestern football game, and Carrie and Heath had an evening to relax and then went on a dinner date and sat outside. We mowed the lawn and vacuumed and did a bunch of laundry to prepare the house.

Sunday was another gift. The Rev Joe Clifford, a dear friend from my preaching group, preached for the saints at Westminster. We took the boys to church school on the courtyard. It was the first real meeting for Heath’s confirmation class, and he wanted to start it with all of his buddies. He may not be back for awhile, but made it today. The Rev. Bob Dunham preached at First Presbyterian in Burlington – Carrie was on the schedule to preach there today. These gifts from colleagues are so meaningful. Joe and Jennifer Clifford came to have lunch on the porch, and Joe spoiled the heck out of Rosie. In the afternoon Heath was able to have a last-minute hang-out with a few of his buddies at Pelicans Sno-balls outside. He hadn’t seen many of them in awhile, and it may be a while before they get to hang out again. These friendships matter a great deal.

Sunday night while Carrie vacuumed, I went back to pick EB up from youth group at church. The boys wanted to ride along. As I stepped out to say hello to a friend EB walked right to the driver’s seat and shut the door with a smile. Heath wanted to drive around the nearby neighborhoods on the way home. “I may not get out for a while, so can we drive some extra?” They cranked up some country music and as the evening settled in they flipped from song to song, singing probably a little more loudly than the neighbors would have preferred as we meandered through Hope Valley on the way home.

By the time you read this on Monday, we’ll have gotten Wilson and EB off to school and will be on the way to Duke. We check in at 10am in the clinic, and hope to be in a room by mid-afternoon. They will access his port and begin the process of fluids, his pre-meds to mitigate side effects, and then the combination of pills and infusions that will shape the next few days. We’ll hold each other and pray that these meds will kill the cancer and won’t do too much harm to his body at the same time. We expect to be in the hospital all week.

Back to singing in the car on the way home. One of our favorites is, “There is no ‘I’ in beer,” by Brad Paisley. Okay, maybe it is one of my favorites and the kids humor me. Wilson and I have had fun picking out the other musicians and athletes in the video. Again, it’s completely silly. But I like to think of it as an ode to the value of community. 😊 So, put your feet up, sing along, and give thanks to God that we don’t have to walk this path by ourselves. Maybe even plant an apple tree. Please, please know how grateful we are for all of you.

Monday, September 13 -A plan comes into focus

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Hi friends, a few quick words.

1.  We are home.  Heath responded very well to this round of treatment, for which we are grateful.  So the weekend was filled with hanging out in the hospital and watching A LOT of football.  We’re all tired, but relieved to all be back under the same roof.  He’s back up in his recliner in his room playing video games.  We pray this week will be one of eating and drinking, getting rest, and gaining strength.

2.  The next few months are going to be really hard.  We had time over the weekend to conference with our team multiple times as details of the next few rounds came into focus.  After a few more tests this week, we will return to Duke next Monday morning to be admitted for the week.  Once there we will start an intensive regimen of pills and infusions that will, we pray, OBLITERATE this cancer.  But it is going to take quite a toll on his precious body, and there are lots of moving parts we’ll have to manage.  We are thankful to be in the hospital with the pros that first week, but we expect that to be really tough.  My parents are coming in to help manage things at our house and in the carpool line so we can be as present as we need to be at Duke.  As pleased as we were with how the weekend went, our anxiety is beginning to build for what is coming.  For what will happen, for all there is to do, and for what he will have to endure.

3.  On Saturday Carrie and I made plans to be there together with Heath for the afternoon, thanks to her great parents for support on Wilson’s baseball game and a quick swim out with their neighbors.  Once I arrived we had a few hours of making sure the plan was set, waiting on someone to call someone to send up something, the usual things.  It was quiet for a bit so around 2pm I picked up my phone to watch a bit of the livestream of a funeral service.  Some wonderful WPC church members moved away a few years back.  We did a service for them in the memorial garden this summer, but the family was also having a service at their church in northern Virginia.  The pastors of that congregation are friends, and it is always a gift to share caring for saints in this way.  I started watching the beginning of the service, saw one son speak, and listened to a lovely handbell piece.  Then the scurrying began in our room, all of the sudden, nurses coming in and out, accessing the port, hanging another bag of fluid along with one of the chemo meds, flushing the line, handing him a pill to take.  The next round of chemotherapy was beginning.  And at that exact moment, I clicked back onto the service, where one pastor was reading from Psalm 121.  As I was watching all of the scurrying and could feel the knot in my gut tighten, what I heard in my ear was: 

“I lift up my eyes to the hills— from where will my help come? 
2 My help comes from the Lord, who made heaven and earth.
3 He will not let your foot be moved; he who keeps you will not slumber.
4 He who keeps Israel will neither slumber nor sleep.
5 The Lord is your keeper; the Lord is your shade at your right hand.
6 The sun shall not strike you by day, nor the moon by night.
7 The Lord will keep you from all evil; he will keep your life.
8 The Lord will keep your going out and your coming in from this time on and for evermore.”

And I knew, in all of the fear that grips us, that we – and especially our dear Heath – are held, and loved.

Saturday, September 11 — Remembering

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Heath and I are sitting here in his hospital room watching the coverage of the 20th anniversary of 9/11.  I am glad I am sitting a little behind him because I keep feeling the tears on my face as I think back to that day, as I think of the lives lost, the acts of heroism.  May we never forget.

I asked him if it was too much right now–if he wanted to change the channel–and he said, “Not right now. I want to see more, but football will be on in a while…”  That felt like a pretty age-appropriate response, especially with everything he is going through.

It has been a long week.  It will be a long few months.

Heath’s heart catheterization went well on Thursday–all his pressures are really good (and the same as they have been for years) and his rejection level also remains the same at a 1R0 status, which is very good.  This good news made it possible for our transplant team to say “go ahead with the treatment that will knock the heck out of this.” (ok, that is my interpretation and those of you who know me, know that I probably am using stronger language in person…)

We had a long meeting to learn of the plan of treatment for the “obliteration” (Heath likes that word for it) of this lymphoma.  At this point, I will spare you all the lists of meds and too many details.  Heath has decided that he prefers to know basics but really doesn’t want to know lots of details OR all the coming side-effects of all the meds (he knows “enough,” he says). 

Basics: He will do the first round–with not quite the whole cocktail–today.  He will stay inpatient for a couple of days to monitor his reaction.  This cycle will be only about 8 days.  The plan is to start the next cycle (the rest of the cycles are 21 days for a total of 13 weeks) on Monday 9/20.  The first week of each cycle will probably be inpatient with the other 2 weeks at home, hopefully.  The meds are a mix of IV, oral, and intrathecal (lumbar puncture).  He is most likely going to be pretty darn sick. INTRATHECAL has now landed on my “medical words that I wish I didn’t need to learn” and it just means spinal injection.  It sounds super painful but is done with numbing and doesn’t seem to be awful (I know, easy for me to say).  They did the first one yesterday after the port was placed while he was still under anesthesia.

The port placement went well.  It was a super long day.  What we were reminded of yesterday is that when you are one of the last surgical cases, your time gets bumped later and later.  He didn’t get to the PACU (recovery) until after 5:30.  We finally got to our room on 5200 at 6:45!  He was still groggy and he went back to sleep eventually and then ended up taking meds and eating his Noodles and Co. at 11:30 p.m.  Many days are just like that in hospital world.  Through the day we saw several staff members who we have known for our almost 13 years here at Duke–one nurse who was with us in the PICU the night Heath was put on ECMO all those years ago now works in the PACU and we’ve continued our relationship with her for all these years.  And then we got one of Heath’s favorite oncology nurses for the night.  Even in the midst of a long day, I found myself regularly thinking, “there are a lot of good people in this place, in the world.”

And indeed there are good people.  so many.  Sometimes we forget that with all the hard things in the world; with all the hard things going on in our lives. 

The song “The Prayer” from the musical Come From Away has been playing through my head all morning.  The song is based on the prayer of Saint Francis. (If you haven’t seen Come From Away, based on true events of 9/11 and following days in Canada, I hear it is on Apple TV.  It is something that everyone should experience.)

Make me a channel of your peace.
Where there is hatred let me bring your love.
Where there is injury, your pardon, Lord
And where there’s doubt, true faith in you.

Make me a channel of your peace
Where there’s despair in life, let me bring hope
Where there is darkness, only light
And where there’s sadness, ever joy.

May we never forget–what happened that day 20 years ago, what happens when we let hate and anger take over. May we never forget that there is so much good in the world–in first responders who run into buildings and give their lives to save others and on pediatric oncology units and all the places in between. May we endeavor to be channels of God’s peace, hope, and light.  May we be open to the times when we need others to be those channels in our lives.

Visits to the 9/11 memorial in June 2016 and 9/11 museum in February 2017

Wednesday, September 8 — A busy week and next steps

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On Tuesday we had walked from the PET scan in the Duke Cancer Center back to the 4th floor of the CHC (Children’s Health Center) with the PET IV still in, hoping that they could use his IV to draw labs.  As we were telling the story of our “journey” to the nurse drawing labs (the IV worked!), I said off-hand, “Heath has been such a good sport in the midst of all of this…”  He turned and looked at me, with that Heath half-smirk, and said, “Do I really have any other option?”

And there he is.  His whole life with so many medical challenges.  

That is what finally brought me to tears last night.  We would switch places with him in a minute, but we can’t.  All we can do is love him and care for him.  Any of you who have cared for a loved one who is suffering knows this feeling deep in your soul.

The PET scan results were not what we had been hoping for.  Not enough progress had been made.  So, it is now on to the next steps.  The oncology team, in conjunction with cardiology and nephrology (those darn creatinine numbers…grrrr…) are in the process of making decisions about the cocktail of drugs, but we know we’ve got to hit this with the harder stuff.  They had been hoping to get the general surgery team to put in a port during his heart catheterization tomorrow, but alas, we just found out that it is too tricky to navigate different procedures in different spaces (cath lab instead of OR.)  So, they’ll put a port in on Friday.  And then will keep him inpatient for several days with the intention to begin the next round of chemo with the new drugs on Saturday.  Apparently, there is much more monitoring that needs to take place with any of the options.  That is all we know right now.  We should have a better understanding tomorrow.

Because he had been feeling pretty good, I think we all thought we’d get the news that we wanted (much more progress on that mass; that he could keep on with the least harsh treatment.)  But alas, we always knew this next way was more probable.  But we felt the sting of disappointment last night.

Again, the roller coaster keeps going.

We cling to glimpses of “normal.”  When the team told us that they thought we had a couple of weeks of “less sick/less immune-suppressed,” Pete and Melinda (my brother and sister-in-law) and the kids came to visit from Virginia.  They stayed at Mom and Strow’s outside Chapel Hill and all who weren’t our immediate 5 masked inside (that is what Hemonc has asked us to do for now), of course.  But we had the gift of some hangout time with the cousins. We knew it wasn’t totally “normal,” but listening to the banter, the laughter, the fantasy football drafting throughout the weekend, well, that was spirit-lifting and filling.  It is a reminder of why you keep fighting when you feel really crummy.

So now we keep going; he keeps going, a better sport than any of us adults can imagine being, frankly.  We know, Heath knows, that we don’t do this alone.  We are grateful for the glimpses of “normal” and the glimpses of grace along the way, and we most certainly feel your love and prayers.

Carson meeting Rosie for the first time!
Fun with Ama, Molly, and Wilson and their special stuffed friends (oh, the imaginations of these two!)
Tour of the new WPC fellowship hall
Family fantasy football draft on the porch

Friday, September 3 — First course complete!

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So…..Carrie and I learned last weekend (when we posted a positive update and then spent the overnight hours in a rough patch), not to do updates too late in the day!  As evening comes the anxiety rises a bit.

Thankfully, it has been a good two days.  Tuesday was a long clinic day with labs, and some concern about dehydration – so we plugged up IV fluids for a bit.  He was sick overnight Tuesday night/Wednesday morning, so we visited our clinic friends on Wednesday as well, though only for a few hours.  The kind woman on Thursday who did the entrance covid screening looked at Heath and said, “I did this for you yesterday, didn’t I?”

Thursday’s infusion was as smooth as those things could be.  We had a wonderful hour with a dear friend who works for the Hospital School (yes, that is a thing), and who is working with Heath’s Lakewood teachers to make a plan for his education this fall.  They started working on a book to read and a project to be working on.  It was exciting to see some of this beginning, but it came to an abrupt conclusion when they started his pre-infusion meds, especially the Benadryl.  Heath slept through the first two hours of his infusion – which, like last time, took 3.5 hours.  He didn’t feel too nauseous and even had a snack near the end.  It was a long day, but the beautiful weather meant he could come and lay down on the porch, or inside.  He ate a normal dinner as the rest of us went back and forth from a Jordan tennis match for Ella Brooks, and worked to stay hydrated.  Keeping him eating and drinking with the illness and accompanying weight loss is a constant challenge, especially when you get sick pretty regularly.  But we are getting creative with protein drinks, and Carrie even found some chocolate chip cookies with protein at Target (everything is at Target, right?!), which are a hit. You can imagine it, can’t you?  “Dad, I’m having another protein cookie!  Look, it’s good for me!”

Thursday was a good night of sleep for all, and has been a slower day for Heath to rest, as Wilson and Ella Brooks went to school.  As I rush out to battle the Jordan pickup car line for the first time (Yikes!), I wanted to share one more thing we’ve been thinking about a lot.  Most of us are trained, as we grow and learn, to try and think about the big picture.  Where are things moving?  How can we plan accordingly?  In organizations, we ask questions about long-term vision – who are we called to be?  Then we can align priorities and work with the vision.  We try to organize teams and think sequentially: THIS will happen, then THIS, then THIS.  But we have, thus far, found that kind of thinking profoundly frustrating.  This disease is something you can’t plan for or work around.  Our significant problem-solving skills are inadequate.  Carrie and I work hard to function at a high level and keep the trains moving and knock things off of the list.  None of these skills can help us now.  Each day brings its own set of challenges that are very difficult to plan for.  And if we do plan, we are only frustrated.  We’ve had to work to bring our vision down to ground level.  What will we do today?  How does he feel this morning?  Certainly, as this goes on, we learn the rhythms of the clinic better and memorize the names of the medications.  That is already helping us.  But trying to look beyond that is a recipe for disaster because you’re always measuring where you are and how anyone is doing against your expectations, which is a trap.  So, we’ll be grateful for a beautiful afternoon and a protein cookie.  We’ll be grateful for the friends who will bring dinner this evening.  We’ll be grateful for the neighborhood happy hour that happens every Friday at 5 right in front of our house, instituted in the pandemic.  And maybe we’ll all walk the dog together in the cool of the evening.  And for today, we pray, that will be more than enough.  We are so grateful for all of you.