Returning to Minnesota: Ethan's One-Year Evaluation

Last Friday, April 13 was the one-year anniversary of Ethan's bone marrow transplant.  Yaay!!  Go Ethan!

Unlike many families, we didn't celebrate the event as a re-birthday; mostly, I think, because it would be difficult to explain to Caleb why his brother gets to celebrate two birthdays.

But it is a fantastic milestone, nonetheless.  Just the week before, Ethan and I had gone to our regular check-in with Dr. Nemecek, Ethan's local transplant doc.   At the end of a very easy, routine appointment, Dr. Nemecek looked at us and said, "Okay, I'm done with you.  You don't need to come in anymore."  After 33 weeks of coming in for enzyme infusions and for follow-up on transplant #1 and then transplant #2, it's become a regular part of our lives.  

While I was still trying to process that, I asked what happens if Ethan spikes a fever, where do we go?  She said, "Ethan's off immune suppressants and he doesn't have a central line anymore. If he gets a fever go to your primary care doctor.  You'll be doing your annual transplant follow-up in Minnesota.  So, there's nothing more you need us to do for you here."

The hematology/oncology clinic has been such a large part of our journey for the last 33 months.  It really was a shock to process.  When I called Sarah to tell her, she even got a little teary from the thought of loosing that safety net and from the idea that Ethan is just that stable now.

Speaking of our annual evaluation in Minnesota, Ethan and I are getting on a plane in just about four hours, for a fun-filled week and a half of poking, prodding, long discussions, and a surgery.

Here's a quick overview of our trip.

Thursday: Endocrinology - requested consult to discuss growth/height/weight patterns in post-transplant hurler's patients and at about what age might we need to consider growth hormone if indicated.

Friday: Pulmonary - discussion of pulmonology elasticity and monitoring in Hurler's kids, post transplant.

Saturday and Sunday - I'm thinking zoo and the science center!

Monday: Neuropsychology: developmental testing and consultation
               Orthopedic Consult: hips, legs and feet

Tuesday:  Dermatology consult to discuss eczema management and other skin issues in hurler's kids post-transplant
                Neurology: to review recent, routine MRI

Wednesday: Orthopedics: spine exam and consultation
                    Labs and transplant clinic exam and consultation
                    Routine echocardiogram and cardiology exam and consult

Thursday:    Bi-lateral carpal tunnel surgery
                   ABR hearing test

Friday:        Fly back with Ethan in hand and wrist splints :-(

Most of these appointments are routine annual evaluations recommended for Hurler's patients.  The endocrinology appointment isn't regularly scheduled, but I want to know how best to track his weight and height and what the criteria are for needing growth hormones.  I would very much prefer never to have to use them, but I want to understand when they are used to help head off other, potentially more serious problems.   I know that it's very early to be asking this type of question, but I don't know if we're going to be going back to Minnesota every year when Ethan is older, and I just want to have an idea of what that timeline and decision tree looks like.

The dermatology appointment isn't regularly recommended either.  But my sense is that a lot of MPS kids have eczema and other skin issues, and I think it's true that the transplant causes additional skin issues. Sarah and I want to manage this far, far better next year.  At the same time, we don't want to overuse topical steroids, so we want to know what other options we've got.

In a nutshell, by this time next year, Sarah and I expect that we will be working with some specialists here in the NW, instead of getting all of Ethan's specialty care through Minnesota.  But before we make that change, I want to pick some brains and get some experienced opinions

A quick wrap up of other news

The four of us took a 4 day trip to Seattle during Caleb's spring break.  It is so fantastic to see the boys exploring new activities and areas.  Unfortunately, we didn't escape the Pacific NW weather.  It was cold and rainy in Portland and Seattle that week. Some pictures are online here.

Overall, Ethan is doing incredibly well.  He's making good progress in his inter-personal skills and general situational awareness.  I think that's very largely due to the four hours a week of early-intervention preschool.  Ethan's spent so much time in hospitals and in isolation.  He loves being around other kids and learning from them.

Caleb is doing exceptionally well, I am very, very proud of him.  He started off the school year very behind in reading and he's worked hard--although grudgingly--at it all year.  His reading has come along very well and it is so fantastic to hear him reading.  I hope that he'll be caught up with his peers by the start of the next school year.

Last weekend, Caleb and I took our first Tae Kwon Do tests and obtained our white belts. I think that basically means that we're qualified to be students of the school.  It is very interesting to watch Caleb in martial arts class.  He is showing a lot of focus and it is clear that he is working hard to do it very well.  But he approaches it in such a low key way, there are no outward signs about how enthusiastic he may or may not be.   He's trying hard and he says he's having a good time.  I am thrilled that he's found an activity outside of the house that he enjoys, and I'm trying not to push him farther than he's ready to go.

It may be five or six months before Ethan is ready to test for his white belt.  He has made some progress in being less disruptive in class.  He clearly enjoys the kicking and punching drills where he gets to run around and kick and hit things.  But, so far, he's shown no patience for learning the techniques--even when presented at a three-year-old level.   If he were any other kid, I'd likely pull him out of class and we'd wait another year or so.  But I think the exercise and strengthening he gets from the activity are very important to him, and will be even more important down the road when he's dealing with more of the long-term effects of the disease.  I really want this to work for him.  I'm fairly pessimistic at this point, but we'll give it 2-3 more months and see where we are.

That's it for now.  I've got to get packing. Thanks for checking in on us.


Sandi said…
Quite frankly, that week sounds like a nightmare, and with a surgery at the end to boot? Good Grief! Anyway, hope it all goes smoothly for you and you can still have some fun together.