T+50: Are we there yet?

A game of hide and seek during a walk
next to the Mississippi.
At the halfway mark, Ethan is doing so well that we're all starting to get the "when are we getting out of here?" bug.  Meanwhile, Caleb's school year is about to end, so I'm about to start spending a lot of time with both of the boyos.

Ethan News
Over the last week and a half, Ethan has come off of the TPN IV nutrition, and he's come off of the IV antifungal.  So he's not on any night time IVs at the moment.  In fact, he's not on any home IVs at all!  Sarah and I are doing a little happy dance about that!

[I wouldn't suggest reading the following while you're eating.  If you're catching up with Ethan while grabbing a snack, go ahead and finish that and let it settle before you read the next bit.  Go on, we'll wait]

Unfortunately, Sarah caught the cold that I
had.  After 4-5 days in masks for each of
us, we seem to be over them.  Fortunately,
Ethan and Caleb didn't catch anything.
We did push a little bit.  We asked (nicely, but persistently) to get him off of the TPN perhaps before the dietitian would have otherwise suggested it.  But our attitude was that getting him back on solids, even a little bit, would help reduce his nausea by giving his stomach acid something to work on, and it would cut down on his diarrhea because his guts would have food to process.  That has all worked out very nicely.  He's only thrown up once or twice in the last week and a half, and his poops are much more solid and much less likely to blow out the diaper and get all over the place. He's eating about 80% of normal, which is pretty good at this point.  Even better, and kind of surprisingly, he's drinking enough to help keep his kidney's flushed and keep him off of nighttime IV fluids--for now.

In other news, the immune suppressant that he's on causes hair to grow everywhere.  His eyebrows are bushing out and he's got some peach fuzz on his face.  It won't be long until our little wolfman returns at which point diaper changes will take on a whole new dimension.

[Sorry for that.  You're probably thinking that was too much information.  But these are the lovely details that are the fodder for many conversations here at RMH.  -ed.]

We also got chimerism results from the 5/25 blood draw.  Ethan's CD15-which regulate his ability to produce enzyme are still very good, in the mid-90% donor.  However, Ethan's CD3 marker, which controls T cell antibodies has dropped to 5% donor.  Dr. Lund says that this is pretty normal with the Campath protocol and that this number will likely increase over the next year and a half.    Sarah and I are trying very hard to focus on that that point.  However, after watching the chimerisms from Ethan's transplant slowly fail over the last year and a half, this does have us a bit on edge.  During our conversation yesterday, Dr. Lund also mentioned that with this regime, if the enfraftment is going to fail, it's not uncommon for that to happen around T+100. 

Taking it all together, we look at Ethan and he's doing fantastic, but there's still that nagging worry banging around in our skulls.  If you dwell on it, it's enough to drive you a little batty.  So we try not to do that.

On a related note, Ethan had his last enzyme replacement therapy yesterday!  (Assuming his numbers hold up.) [See there's that nagging worry thing again.  It's always popping up!]  We didn't keep track of how many ERT infusions Ethan received.  But he started the 6 hour ERT infusions in August 09, and went every week, except for a two month hiatus last spring when we thought his first transplant might be producing enough enzyme.  At this point, Ethan's body is also producing enough red cells and platelets that we don't need to go in for transfusions,

All of this means that we only need to check in for blood work at the BMT clinic once a week, and it's only a one hour visit, which is fantastic!  

Since we're on such a light clinic schedule, I've filled up the rest of the days with rehabilitation, physical, speech and occupational, therapy.  That helps us get out of the house at least once a day and takes advantage of having access to rehab folks who have experience working with a bunch of Hurler's kids. 

The only thing that we're having problems with at the moment is Ethan's sleep schedule.  Over the last week or so, the melatonin doesn't seem to be helping as much.  Once again, Ethan is waking up in the middle of the night and wanting to stay away for a couple of hours at a time.  Usually, he'll wake up and get out of bed and go over and wake Sarah up and want to go into the living room.  (I won't make any jokes about the fact that he always seems to want mom and not dad because I don't want to end up sleeping on the couch.) 


Caleb News
Caleb and his friend, Wes, watching the
Twins game from the skybox.
Tomorrow is the end of the school year here.  Caleb had a fantastic experience in kindergarten here.  His teacher says that he's doing great with his reading, writing and 'rithmatic, and she has pronounced him absolutely ready for first grade.   Sarah and I have certainly noticed how much he's learning.  Just yesterday, Caleb mentioned that it was staying light until fairly late in the evening.  Sarah said, yes, the days were longer because it was a bout the middle of the year.  To which Caleb replied, "you mean it's almost the summer solstice?"  

[Editors note:  Sarah racked up all kinds of parenting points when Caleb said that.  I've been known to chide her for using words like "summer solstice" instead of describing the concept using something less than a H.S. or college vocabulary.  Evidently, she was right and I was... less right.]

As the school year has wound down and the warm weather has taken hold, we've all been getting out of the house more.  The RMH schoolkids have gone on school field trips to see a Minnesota Twins game (from a luxury suite, courtesy of a generous donor), to the Science Museum, and to the sculpture garden,   Caleb and I also went to a Twins Game when the local McDonald's franchises donated tickets, and again last weekend when a generous person donated tickets through Care Partners.   Caleb sure has seen a lot of baseball recently!  For a six year old, he's doing pretty well paying attention to the games.  (It makes me really sorry that Portland's minor league team was sold and moved last year to make way for the city's new professional soccer team.)
Caleb and I made a return trip to the train museum and rode
the locally famous SOO caboose.

We've also been getting out some as a family for walks along the Mississippi River or out for a walk up to the main drag for dinner.

For months now, I've said that we're not watching the clock, and that our focus is on Ethan and on staying here as long as it takes to make sure he gets the care that the needs.  But we recently said goodbye to a couple of other Hurler's families that arrived for transplant at the same time we did.  And with the coming of spring and Ethan doing so well, it's hard not to look at the calendar and wonder when we can get out of here.

In case you're wondering, T+100 is July 22.   With any luck, it will be a long and boring 50 days. 

Comments

Anonymous said…
Todd, Thanks for the Ethan and Caleb updates! We are always thinking of them. I'm glad that you'll be around for at least a couple of weeks when we arrive - not that you want to be there. Anyway, continued prayers for Ethan and your family. I second your hope for a boring 50 days for you - boring can be really nice.

Blessings,
Ann Marie Raddell
Josiahsjourney said…
Wow, this all sounds so familiar.. we are so very glad that Ethan is doing good. We keep your family in our prayers! Even though you count the days to go home (and can hardly bare it), I remember it as a precious family time. Josiah was doing well like Ethan at this point and we could go on walks and as you said "we are not watching the clock". As hard as it is, enjoy this time. For the blessed day you get to go home, you will hit the road running! We pray for a boring 50 days!

God bless,
The Carman Family

p.s. the hair gets worse... we called Josiah our monkey. Literally, we could not see his skin except around his eyes. :)
Anonymous said…
Your family is always in our family's thoughts, thanks for the updates and we're SO THRILLED that things are going well to this point. Hang in there. You have a beautiful, incredible family.
High fives all round! xxx (p.s.we caught your cold too!)
Smilen Champ said…
Hi Ethan
My name is Jenna and I came across your site. U are a courageous, strong, determined, fighter. U are a brave warrior, a smilen champ, Inspirational Hero and a Super Trooper. u will be in my thoughts. Caleb, I am glad you are having fun and going to baseball games.
I was born with a rare life threatening disease and I love it when others sign my guestbook.
www.miraclechamp.webs.com
Anonymous said…
Todd: Although I enjoy reading all your updates, this one is just wonderful! Even with the "not so good stuff", which is to be expected, I am amazed at how well Ethan (and all of you) are doing at this point.

I also appreciated your comment about the hairy butt/diaper changes. I had wondered about that the first time, but did not think it ...um, appropriate to ask. So, thanks!

Barbara T.
Anonymous said…
What great news to hear Ethan continues to fare SO well and the family is getting out for activities! These memories will linger, while hospital treatments and lab results will soon fade...July 22nd will be here in a blink! If you feel the need to count, you can have Caleb make a paper chain and break the links one day at a time. :-) Hoping all goes well as planned!

Best,
Margie
We have been following along, and feel like we're there with you! Torie's engraftment dropped to 3% at one time. I ALMOST know how you feel. Keep the faith and safe travels to Sarah and Caleb. Sending you prayers and happy thoughts! Stay strong! XOXOXO Torie and Cheryl