T+13: Ethan's a Superstar



With physical therapy this morning
Nothing but good news today.

The Summary:
CT Scan showed that the lung nodules are actually SMALLER.
Sinus CT showed no absess and resolution of an inflammation there.

Vitals:
Temp: 98.3, fever free for 36 hours
White blood count: 0.7
Glucose: hyperglycemia resolved over the last 36 hours without need for insulin.  Two moderate glucose spikes within the last twelve hours

Today's plan:
Stopping the voriconazole
Red blood cells infusion
Dialing back the pain meds

Ethan is making steady progress and overall, it's been a very good 24 hours.  I'd like more like this, please.

CT Scan
Ethan needs to wear a mask when he leaves the room to
avoid viruses.  Swaddling him was the best way to
keep him from pulling off the mask.  He didn't seem to mind
it and started to go to sleep in my arms.
Ethan was scheduled to go down for his CT scan at 8 am yesterday morning.  When they came to get him, they said that they weren't planning to sedate him and were just going to give him some benadryl.  (I'm sorry, what?  How many times have we been down this road?)

When I told them that Ethan would need to be sedated, they came back and said will then they would have to wait until Tuesday because they couldn't get anesthesiology scheduled.  (I'm sorry, what?  You're seriously going to hold this another day?)  I was fairly frustrated and angry and told the LNP that he needed to be sedated and that it needed to happen today and that if she couldn't get it scheduled then I expected Dr. Tolar to escalate it until it could get done.  They came back about an hour later and said that they'd been able to schedule him to go downstairs at 2p.

We went down at 2 and were back in our room by 4.  With Ethan, sedating him for a CT is a pretty easy chemical sedation through his IV.  He hasn't needed to be intubated and recovers pretty quickly.  This was more of the same.

We got the results around 6 yesterday evening.  The larger nodule in his upper right lobe decreased in size from the last scan and has now been classified as stable since the initial scan on 1/10.  The radiologist could not locate the upper left lobe and lower left lobe nodules either because the cross section didn't catch them or because of lack of full inflation of the lung, or because they've reduced in size.

It was completely fantastic news!  The only better news I could have imagined is all of the nodules had disappeared.

I talked with Dr. Tolar this morning, and he agreed that it was great news.  I asked him if he could interpret anything from these results; for example, does the fact that they haven't flared when Ethan was at his most vulnerable and that they reduced mean that they were active infections that responded to treatment, and does this mean that the nodules won't be an issue going forward?

To the first he said, there's still no way to know whether they reduced in response to treatment or if they were scar tissue that is naturally reducing over time.  To the second he said, unfortunately, no, it does not mean that the granuloma won't be an issue going forward.  It simply means that they're not an issue now.

When I got the report yesterday, it was like this weight had been lifted, and I reflected on the last few months of living under this low probability but high risk death sentence. Oh, how I really wanted Dr. Tolar to tell me that we wouldn't need to worry about the granuloma any more.   But, that doesn't detract from the fact that Ethan is doing really great today, so I'll take what I can get and push that worry at least a little further back in my brain than it had been.

Since Ethan was going down for a scan anyway, Dr. Tolar asked that the scan cover his nasal passages as well.  Ethan had been sniffling some over the past few days.  I had assumed that it was normal soft tissue breakdown from the chemo and radiation.  Dr. Tolar said no, it was evidence of an infection and while we were there he wanted to have it checked to make sure it wasn't an abscess.

The CT scan showed resolution of pansinusitis (an inflammation).  So, evidently it was a bacterial infection that the drugs kicked back.

In other news
Ethan's last "fever" was Sunday evening.  (That's a little misleading because the hospital doesn't consider anything under 100.5 to be a fever,  So they don't include the 99.8 temp he had yesterday.)  Anyway, overnight and so far today his temp has been well and truly normal, which is good, good, good.

The resolution of the fever and underlying infection (whatever it was) seems to have taken some of the stress off of his pancreas and his glucose levels have largely returned to normal ranges without insulin.  He's had a couple of spikes, but his insulin drip is still hanging on the pole, so the nurses can administer insulin as needed. I'd prefer to be able to check off that worry as completely resolved.  But he's getting over the hyperglycemia faster than I thought he would, so I'll take what I can get.

His white blood cell count was 0.7 at 4a and 0.6 at 8a.  I'm assuming that the difference is basically sample variance.  Regardless, he is engrafting and that's the important thing. His counts aren't high enough yet for us to get a differentiation that will tell us what his absolute neutrophil count is.

Some Really Good News
that I haven't had a chance to throw into the blog yet
Before he finished his rotation as the attending on the ward, I was talking with Dr. Orchard about graft versus host disease.  He said that GVHD isn't a very big concern with this protocol.

Huh?  What?  Everything you read and everyone you talk to will tell you that GVHD is potentially a very significant complication in BMT.

Dr. Orchard went into a very technical explanation that was largely over my head. The part that I caught boils down to this: the Campath (one of the drugs in Ethan's chemo protocol) tends to retard the production of a partiular type of T Cell, which is a type of white blood cell, that plays a part in GVHD.  Absence of that type of T cell results in very low levels of both acute and chronic GVHD.  In fact, he said, of 30 patients they've seen no acute GVHD and only two cases of chronic GVHD, both of those in adults (though don't ask why in adults and not in children, I don't know.)

On the other side of the equation, evidently the immune response, particularly to viruses, takes longer to recover in patients who receive Campath.

But any BMT parent or patient reading this will recognize that a reduced incidence and risk of GVHD is very good news!  I had been thinking of it as our next big hurdle once enfraftment starts taking hold, and I was thrilled to find out that it likely will not be a concern.

On a related note, UMinn does it's first check of engraftment level at T+42, so we'e got a ways to go before we get any word about where the donor vs host question stands.  But at the moment, he does appear to be engrafting.

With all of these positive things going on, we're starting to reduce his pain meds.  I'd say his pain and pain meds topped Saturday and Sunday, when he was getting a high baseline with additional boluses ever two to three hours.  Sunday evening, we scaled back the additional boluses to every 3-4 hours.  Monday day, he only received one bolus in the morning, one in the afternoon  and two overnight.  So far today, he hasn't had one.  So it looks like today we're going to lower his baseline.

He's still very fragile and has a long way to go.  Yesterday morning, a whole bunch of people were prodding and poking him and he got visits from speech therapy, occupational therapy and physical therapy trying to tempt him to play and work. He was too tired to do any of it.  When PT came by, he recognized that they had the toys that he likes, but he still didn't have the energy to play.  When PT left he cried for five minutes out of fatigue and frustration because he was too tired to play.

But PT did stop by today and Ethan got out of bed for about 10 minutes and had fun playing before he wore out.  He's getting some red blood cells today, so hopefully he'll have some good energy when speech therapy comes by this afternoon.  Speech is 0 for 4 with him so far, so I'd really like them to have some good luck.

As I said above: more days like this please.  And we'll just keep taking it one day at a time.


I hope you enjoy the video, below, from PT this morning.  Notice when he signs finished at the end.  He then proceeded to lay down on the floor and put lay his head on his arms to make sure we got the point.  I'm sorry I didn't catch that.




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Comments

Erica J. Thiel said…
Such a doll! Glad in some ways he is improving that is awesome slow and steady finishes the race!!! And remember one day at a time..

Erica
www.rarelydefined.blogspot.com
I love him! huge squeezie hugs to you Ethan and mum, dad and Caleb. Keep up the good work. Positive, healing, engrafting thoughts coming your way xxxx
Anonymous said…
What wonderful news! Also, he is quite handsome as a bald gentleman.

-Sarah S.
PeakDogs said…
Woohoo!! *tears of joy*

May you all have many more days like this. Sending love and light.
-Jennifer
Anonymous said…
Brilliant video. Love your day. Love to you all. Lynda
Anonymous said…
Great news on the CT scan!

Jack Hoey
Elizabeth said…
So glad you all got some good news <3