Tuesday, August 31 – No infusion today!

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If we have learned a few things during our almost 13 years navigating the medical system, mostly here at Duke but I suspect it is the same everywhere, you live into “hurry up and wait” hospital time as well as just knowing that schedules and plans change for all sorts of reasons. We are grateful for the loving care and big brains who have saved countless lives, including our son’s, so we learn to have patience and know that things change from moment to moment in a hospital setting.

Heath and Chris had a HemOnc clinic visit, labs, and an echo (we do this each time to check his heart) this morning, but he is going to go back for his 3rd infusion at the Valvano Day Hospital on Thursday. It seems that this particular change is just based on staffing (more on this further down). Other than being annoyed at having to get up early multiple days, Heath was feeling good this morning.

Chris and I often “laugh” about some rolling lists that we have in our life:

  • “They didn’t teach us THAT in seminary…”,
  • “THAT needs to go on the premarital counseling list…”
  • “NO ONE told me about THIS part of parenting…”
  • and in the midst of this medical crisis, we are adding more to the “Medical information that I wish I didn’t have any reason to know.”

On that last list, this week we add to it some information that pertains to our schedule for next week. Since this week marks the end of the first three-week round, next week will be all about testing: Abdominal imaging to look at the impact of the first three infusions and the regular semi-annual heart tests that were postponed from when they were originally planned in early August (imaging, catheterization, and labs.) This week we learned that you can’t do a heart catheterization w/ coronaries (contrast/dye used) and PET scan and CT scan all on the same day. The contrast/dye that they use in all these scans has dextrose in it. PET scans need to have no contrast (dextrose) until right before you do the scan so you can “light up” the right spots. But you have to do heart cath NPO as well and also with contrast. CT scan also uses contrast. AND, contrast can also be hard for your kidneys to “get rid of.” So, alas, all of that is to say that Heath will have scans one day next week (probably Tuesday, Sept 7) and his heart catheterization early Thursday morning, Sept 9 instead of all in one visit as we hoped.

I suspect we’ll keep adding to that glorious list.

So, back to hospital staffing.

I got teary last night when I heard the news story of a US veteran who died from complications of gall bladder issues because hospitals were over-run and doctors were having to “play musical chairs” with care.

On Saturday night, right after I posted the last update, Heath got sick again. Heath said, “am I going to have to go back to the hospital?” and I said, “buddy, we’re going to do everything we can not to have to head to the crowded ED with all the COVID numbers rising.” (Obviously, we didn’t and thanks to a great medical team and a really kind pharmacist at Walgreens at 2:30 a.m., we have a nice stash of Zofran now.)

I know that people say that not getting vaccinated or even just not wearing a mask is their personal choice. But I would like to remind you that full hospitals and nursing shortages make it more difficult for OTHERS to get treatment for all sorts of other ailments–whether that be a cancer treatment or emergency gall bladder surgery.

I am not sure that that is exactly why Heath is not having an infusion this morning, but it was a good reminder to me of the way that burnout and shortages in staff affect all of us.

Bust in the main lobby of Duke Hospital

Saturday, August 28 – Laughter and Normal Stuff

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“If we couldn’t laugh, we would all go insane.”

These wise Jimmy Buffett words have played in my head in the last few weeks. A lot.

The rest of this week has been filled with “normal” stuff–or our current versions of what “normal” looks like.  We’ve tried to find some humor and grace in the ordinary stuff.  EB and Wilson each had a good first week of school.  Long car lines. High school tennis match.  First baseball practice.  Mowed lawn. Grocery store runs. Hamburgers on the grill.  Some nice time with family.

Because Heath wasn’t feeling bad after his infusion on Tuesday, we were able to spend much of the rest of the week working on navigating his school situation– he is going to be able to work with Duke Hospital School and his current teachers at Lakewood to do school at home for now. The hope is that it will set him up to be ready to head back when he is finished with treatment!!  And we’ve also been working on setting up his “Heath Cave” (safe space bedroom if he feels rough or just needs to be away from others.)

I don’t really know what “normal” is at this point, but I felt it creep in a bit this week.

Many folks have been wondering about next steps and treatment.  First, know that the plan is a bit of a moving target.  At this point, he’ll be doing 6 cycles of 3 weeks each of chemo, which takes us through most of December.  He’ll have his 3rd infusion on Tuesday.  The next week, probably Tuesday or Thursday, Heath will have a bunch of scans along with annual heart catheterization.  That will help the team know whether we’ll stick with the current chemo meds OR if we’ll change up the “cocktail” a bit.  And we simply won’t know much more for a couple of weeks.

So, in the meantime, we’re just going to try to find a little more humor and grace in the ordinary moments–even in the “normal” chaos.  Goodness knows we have a renewed appreciation of all of it.

Tuesday, August 24 – Second Infusion

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Heath had his second infusion today and we were introduced to the Valvano Day Hospital. He is actually feeling ok, for which we are all grateful. 

It was a really long day and we’re pretty darn tired, but at least we’re at home.

We keep saying that this is a marathon and not a sprint.   But today felt a little like both. 

Ella Brooks and Wilson had really good first days of the 10th and 3rd grades.  For that, we will also be grateful.

 

    

Saturday, August 21 — Home!

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Quick update to let you know that Heath was discharged today and is settling in at home!  What a difference 48 hours makes. We’re praying for a quiet few days at home and Heath will have his next infusion on Tuesday morning. We’re hopeful that much more of this treatment can be outpatient. 

Goodness, we are incredibly grateful for the outpouring of love and prayers and generous gifts from you all. ❤️

    

Thursday, August 19 — Emesis is our Nemesis

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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!)