Still on Hold (1 of 2?)

The boys at bedtime last night (with fresh haircuts!).
They'd both love to sleep together.  But a six year old
and a two year old trying to get to sleep in the same bed?
There's no way that would end well!
Sorry we haven't done an update recently. Before Monday, there wasn't any news to share.  Come to think of it, at the moment, we still don't have anything definitive to share; which makes me think that this post will be more in the "blog as therapeutic talking it out" vein, than a "here's where we are and what we've decided" kind of thing.

At the moment, we're on hold for another four weeks.  But we're talking about another biopsy, so that may change.  Hopefully, we'll get some more information today; so after three weeks of silence, we may end up putting out two updates within a day or so.

Ethan had his bronchial lavage on February 16th. The rate of success on lavages is generally very low, so no one was surprised that the lavage cultures came back negative. In other words, the lavage wasn't helpful in figuring out what type of infection the nodules in his lungs are and what specific medication would kill it off.

Monday morning, Ethan had his third CT scan. That showed that the granuloma in his upper right lung is still 6mm. (You may recall that this particular granuloma was 3mm in the 1/10 CT, and 6mm in the 2/19 CT.)

We met with Dr. Lund (from transplant) and Dr. Laguna (from pulmonary) together Monday afternoon to discuss the results. The doctors were hoping to see a reduction in the size of the granuloma that would indicate that the anti-fungal medication (Posaconazole) is treating it effectively. Since there wasn't a reduction, that leaves us with four options:
  1. We can assume that the granuloma is left over from a previous infection and is not currently live. That would assume that the difference in measurement between the 1/10 scan and the others would be due to where the CT bean bisected the granuloma. If we assume this, then can proceed to transplant ASAP. But, if we're wrong, a live infection will kill him when he starts transplant.
  2. We can check with surgery again and see if they feel they can do a biopsy of this nodule. When we've talked about this with pulmonary before, it was felt that this nodule is too far inside the lung to get at easily or effectively.
  3. We can continue the Posaconazole for another four weeks in the hope that we'll either see a reduction or that the Posaconazole just kills it in place.  Realistically, that would push the transplant back an additional six weeks: four weeks for the meds, two weeks for the CT, review, and if it's okay, then review of the final transplant protocol by the insurance company.
  4. We can put him on intravenous Amphotericin, a stronger anti-fungal, but one with potentially lethal side effects.

Our transplant doc, Dr. Lund, strongly suspects that we're dealing with the first scenario, and that this isn't an active infection. I'm pretty sure he feels comfortable starting chemo. But, he's deferring to the lung specialists in pulmonology. I think that's as it should be. There are any number of reasons why the BMT mortality rate here at UMinn is half of what it is elsewhere. Part of that success rate is experience dealing with post transplant complications. But part of it is the comprehensive workup Ethan went through and listening to the expertise of all of the various specialists.

We've had a surgical consult Tuesday afternoon to discuss option 2. I'll come back to that in a minute.

With option three, the operative question is "if we do another four weeks of the Posaconazole, and there's no change, will everyone feel comfortable signing off on the transplant?". If, after four more weeks of medication, we do another CT and it shows no change, will pulmonary feel okay signing off on transplant?

Since the granuloma isn't growing, no one really wants to consider Amphotericin. Though I suppose if another CT scan shows that it is growing and the Posaconazole isn't working, then that we might reconsider that.

All things considered, I want to agree with Dr. Lund that it is most likely an old infection and not alive. (Though in truth, I have absolutely no knowledge, reason or expertise to base that belief upon.) Pulmonology responded to that by saying that there's no sign of calcification on the CT scan as might be expected if it were an old, inactive infection. Since I know essentially nothing about granuloma and less than nothing about the calcification of granuloma, I'll let them argue it out.  I'm in no position to argue the technicalities of this.

The discussion with Dr. Saltzman, the surgeon, yesterday was as helpful as it was maddeningly confusing. It was helpful because he said that they could do another biopsy with the same generally low risks as the first one and try to get a sample of the 6mm nodule at the apex of Ethan's right lung.

Well, that was good to hear.  But, wait a minute.  When did we start talking about a 6mm granuloma at the top of Ethan's right lung?  I thought the granuloma we were tracking was inside the upper center of the lung.  I don't even recall anyone mentioning another granuloma at the apex of his right lung. 
Ethan running around the infusion
center before his weekly enzyme
top-off.  It was "Superhero Day" at the
hospital, and Ethan got a
Superman balloon.
I mean, I assume the doctors all know which granuloma they're talking about right?  And how many of the damn things are there?  I'll leave that question aside for now, though it feels like I need to go in again and just sit down with them and go through the CT scan with them frame by frame.

Assuming that the granuloma in the right apex is the one that went from 3mm in scan 1 to 6mm in scans 2 and 3, then it seems like a second biopsy is the way to go.  If we biopsy that specific site (and they can actually find it and get a sample--not a sure thing), then the results of that would be definitive, right?

At the end of the surgical consult yesterday, I told the surgeon, Dr. Saltzman, that the risks of a second biopsy seemed acceptable, but 1)I wanted the head of his transplant team, Dr. Lund, to actually make a recommendation that the risks were acceptable, 2) we're all talking about the same site, and 3) that if we did it and it came back negative, that everyone would sign off on going to transplant.

After talking things through in this post, it seems clearer to me that we're likely to go with a second biopsy.  Though, obviously, we've still got a little work to do to confirm "what", "where" and whether or not it would answer the questions that are on the table.

I'll try to post an update as soon as we figure all of that out.

In House news, Caleb continues to do really well, though he says he's homesick, and Sarah and I think that will get a lot worse before it gets better.  Caleb's continuing to do very well in the charter school here, and Sarah and I are really happy with all of the progress that he's making.  He's learning to recognize more letters and words, and he's doing really well with his numbers and adding and subtracting single digit numbers in his head.

Wes (l) and Caleb (r) with life sized
cardboard cutouts of two of the Timberwolves.
We recently signed up with an organization called HopeKids.  They organize events for sick kids and their siblings and get tickets for them to go to sporting events, plays, and special movie screenings.  I've gotten more and more concerned about taking either of the kids out in public to places like the science museum or the kids' museum where there are lots of kids that may be carrying a bug that the boys might bring back into the house.  It's really nice to have opportunities to get one or both of the boys out of the house to an event where the other parents understand that and there's less risk of the kids bringing something home.

This weekend, HopeKids had gotten a bunch of tickets to see the Minnesota Timberwolves (the local NBA team) play.  I took Caleb and another kindergartener that's at the house, Wes. Unfortunately, the seats were way up there, three rows from the top.  If you've never been to see a particular sport, it's hard to understand what's going on, much less get into the action, if you're that far away.  Not surprisingly, both boys were ready to leave just seven minutes into the game--once they'd finished their soft pretzels.  Oh well.

In March, we've got Caleb and Sarah signed up to go see a special screening of the new kids movie, Rango, and for an evening of snow tubing.  Hopefully, Caleb will have more fun with those.

In more difficult RMH news, last week we lost one of the kids here.  Sanjay Baca died from complications of his bone marrow transplant.  Sanjay suffered from a genetic blood disorder called Thalassemia Major.  Sanjay and his mom, Karla, arrived at the house about the same time that we were originally scheduled to start transplant.  Sanjay was a lively, joyous, 10 year old with an infectious smile. He is survived by his mother and father and three lovely bothers and sisters.  We will very much miss the chance to share his smile again and to get to know him better.

That's all the news from here at the moment.  Thanks for letting me talk this through with you.  Our conversation has been helpful. Time to e-mail the docs.



april labato said…
Oh Todd my heart breaks out to you and your family
stay strong, to look at your children in bed they
look so happy, and with Ethan walking down the hall so happy. Pray and keep up the positive attitude they need it from you guys I can only imagaine what his brother must be going through
kudos to him always in my prayers. love and hugs
to my nephews i have never met.
april labato said…
Did u get my blog?
Kelly Waddell said…
I know all of this has to be so stressful. Praying that the doctors can come up with a general consensus on what is going on, and give you clear cut options.

And praying for the family of Sanjay.
Y said…
Hi Todd, I'm so sorry this has been so slow and frustrating. What is Ethan's engraftment like these days? I ask because I found an article about a little boy whose engraftment was pretty low with low enzyme levels after the 1st transplant. They did not have a second transplant, and the boy is now 11 years old and in normal school with good grades according to the doctor that wrote the paper. If you're interested I can email it to you. Maybe it'll make a difference? At least you wouldn't have to rush and stress with the transplant as much...
Wendy B. said…
How frustrating...I wish I knew words to say to make it better. Hmmm...I don't...but everyone at DCH is asking how you all are doing and Ethan's name comes up frequently during the week. All the best of wishes, love and hope headed your way from Pill Hill here in Portland. Wendy
Lynda said…
The doctors, the information, the decisions and the unknown implications of each decision... You are doing it all really well and taking care of the kids to boot. Much love to the whole family. Lynda
Lily Tung said…
todd, as always, thanks for sharing. sorry to hear about the challenges and setbacks. your strength and persistence are inspiring. and what strong, loving boys you have! please know that i'm thinking of you and your family and sending you lots of light.