So last night, not long after Heath had begun his first infusion of chemo to fight this darn lymphoma, Chris wrote a really lovely post about starting the treatment.  He talked about how it truly felt like a roller coaster.  I read it as Heath was getting a little sicker and said, “Um, can we just not post that right now?”

At the hospital, the roller coaster had taken a sharper turn than expected. The last few days our really amazing Hematology/Oncology team (from now on referred to as “Hemoc”) had done a great amount of research and information-gathering from experts around the country to come up with the best plan for Heath’s particular PTLD case (he is EBV-negative, which is a little less common)*. 

We haven’t shared much about this, but it might be helpful to know that Heath’s PTLD presented in a “mass” near his intestines, which caused much of the GI stuff that brought us to both Mission Hospital in Asheville in late July and then to Duke a week and a half ago. Different treatments could affect his GI tract in different ways. There was a heavy-duty and less harsh approach.  All agreed to go with the less harsh version for the first cycle (3 weeks with one long IV infusion each week). This version that we decided to try first is a drug called Rituxamab. It is not one that causes tons of nausea.  

Unfortunately, part of the worry of Heath’s case (the location of the GI mass) came true a little more vividly than expected. Let’s just say it was a long night with X-rays and scans and sickness, a surgical consult (was it a blockage? did he need an NG tube?)  He finally fell asleep early morning on some awesome anti-nausea meds and he managed to sleep through a CT scan, a bed change (broken wheels do not maneuver well), and through most of the morning.  All were pretty concerned and somewhat surprised by the onset of such symptoms. But somehow he slept and slept and woke up in a much better place medically and emotionally than anticipated. 

So right now they are watching his labs and hoping that his precious body is figuring out how to right itself after these treatments–and how they might need to help it along. We’re still hoping to get it figured out so he can do most of his treatment outpatient. 

When Chris and I switched this afternoon, Heath was playing MLB the Show on the Xbox and asking for more Gatorade.  We knew it was a good sign this morning when he was not really awake and the nurse made a joke about the trouble he had caused all night and without opening his eyes, he waved his hand and said, “my bad” and went back to sleep.

The roller coaster will continue.  This we know.  But we also know that in the midst of the twists and curves and drops and slow rises, there will be glimpses of beauty and hope and grace.

Last night/this morning I glimpsed all these in the care of nurses, two who spent a pretty tough night with us, who wouldn’t leave Heath’s side, who advocated and listened and loved. One of whom, as we were wheeling his bed through the halls of Duke after sunrise, looked up through a window and said, “Well, look at that sky. It’s going to be a pretty day.”  I looked up as well, in a split second smiled at the reminder of the beauty of the world, and then kept on walking.

For glimpses of beauty, hope, and grace, whatever or wherever they may be, we are grateful.  Especially on this roller coaster.

We realize that this is going to be a long haul and that you are eager to create moments of beauty, hope, and grace. We’ve added a number of slots on a signup genius for meals. If this is a way you’d like to help, we’d be grateful.

*I am NOT a medical professional and I know that many of you are.  I do my best to explain. I can talk or preach all day about all the feelings that surround it, but please excuse my basic explanations. 😊 Medical word today: EMESIS=vomit  (i.e. Emesis is our nemesis!)