Still on Hold (2 of 2)

Okee dokee. It seems as if we've achieved clarity and have a decision on the biopsy.

The clarity is that it is only three sites that we're looking at, not four or an infinite number.

The decision is not to do the biopsy. We'll continue on the Posaconazole anti-fungal and re-CT at the end of March.

Ethan and I are in the infusion center today, and Ethan's transplant doc, Dr. Lund came by and we reviewed each of the CT scan reports.  Dr. Lund confirmed that there are only three sites we're looking at.

I explained to Dr. Lund that I must have confused the small granuloma that's at the apex of his right lung, thinking it was on the bottom of the lung.  Dr. Lund was kind enough to confirm that I was mistaken.  (Though when I later talked to Sarah, she remarked that she'd been at that meeting to and that Dr. Lund had presented it as being at the bottom of the lung.  But Dr. Lund's got more letters after his name, so he must have a better memory. ;-)  )..

Anyway, since it's been my practice with this blog to put you all to sleep with a whole bunch of medical details you don't really care about and can't keep straight, here's the history of the three sites from each of the scans.

(margin of error +/- ~2mm)

                                               1/10          2/9          2/28
-  lacy area bottom                  described as lack of full inflation
both lungs                              

- right upper lobe                    4.2mm       3.7mm     4mm

- middle upper                        3mm           6mm       4mm
left lobe

Okay, does that make sense.  We're dealing with really tiny nodules and the growth noted in the left lobe between 1/10 and 2/9 is just outside of the margin of error.

Dr. Lund talked with pulmonary on Wednesday and pulmonary said that even if we were able to find and biopsy the right upper lobe site, they still wouldn't sign off until they got a stable or reduced scan of the middle left lobe at the end of March.  The left lobe site is is the one right in the middle of the lung.  There's no way to biopsy that without removing a significant portion of the lung.  Clearly, we're not going to do that.

So, we're going to stay the course on Posaconazole and rescan at the end of March.

As I've said before, while we do want to get this moving, we're okay with taking the time that we need to give Ethan the best shot.  The nature of lysosomal storage diseases like Hurler's is such that one month isn't going to make any measurable difference for Ethan.  As long as he keeps receiving enzyme replacement, he'll be fine physiologically.  And assuming that he's been producing some enzyme through last year, he should be fine neurologically for an additional month.

When we first came out, we figured we'd be out here until the end of June or so.  We'll have lost three months before we even start. If I had to guess, I'd say that there's not much chance we'll be home before mid to late August.  That's assuming that there are no post transplant complications--that's a big assumption given Ethan's complex history.  At this point the easiest thing to do is just to know that we're here for the duration, as long as that might take.  If we try to assign an artificial deadline to this, we'll go crazy.

(Of course there's always a possibility that our insurance company will tell us to come back to Oregon for the rest of March and then come back out to Minnesota after Ethan completes his Posaconazole and has a follow up scan in Oregon.)

The biggest impact of this additional delay will be on Sarah's parents who are taking care of our dogs; on our neighbors Steve and Susan who are caring for our house and lawn; Caleb's kindergarten teacher who is taking care of Caleb's fish (if any are left) and on Caleb.

At the moment, we're doing fine.  After running so hard for the last year and a half, this has been easy time for us.  Caleb's spring break is coming up the last week of March. Assuming, the insurance company doesn't tell us to come home,  I'm hoping that Sarah will be able to get at least three days off, and we'll likely explore options to get out of the city for a few days.

Thanks for being there and hugs to you all.

-t, s, c, & e.

Comments

Anonymous said…
Thanks for the last 2 updates, Todd. Sounds like it's been a frustrating couple of weeks. (Love your comment about Dr. Lund's memory...Ha!)

I really hope the insurance company does not force you to make that trip again...surely they should know that adding additional stress to the patients and their families is NOT the way to go.

As always, you are all in my thoughts.

Barbara T.
Erica said…
Always in my thoughts and prayers,

Erica
www.caringbridge.org/wi/ericathiel
Jennifer said…
Surely it would be even harder on Caleb to go all the way home and back to his old school for just a few weeks and then come all the way back, trying to pick up the curriculum in MN again. (Despite the chance to see his friends.)

Jennie
Kelly Waddell said…
Hate that you are delayed again, but you most definitely want to make sure he is ready for transplant. Continuing to pray for you all.
Anonymous said…
Hello Waddell Family,

I have been reading your blog to keep up to date. Caleb's teacher at the Ronald McDonald House has also been in contact with me a few times. It is so exciting to hear about his progress! Please let Caleb know that his fish are doing good. We have only lost 2! Don't worry about them. I can bring them home for the summer with me. I am sure my boys will enjoy fish sitting.

Tell Caleb we ALL say "hi".

Shaun Martinez