Monday, October 19, 2009


It feels like we're standing at the doorway, just about to go through.

Ethan is scheduled to be admitted to Doernbecher's on Wednesday.  He'll have his normal enzyme treatment on Wednesday, and start chemotherapy on Thursday.  Next Tuesday, he'll have a course of radiation treatments and the transplant will be Wednesday, the 28th.

Ethan is enrolled in a clinical trial of a new BMT protocol that aims to reduce the toxicity of previous regimes.  Historical mortality for Hurler's transplants is 20-30%.  The two typical causes are toxicity from the preparatory regimes and post transplant lung infections.  

The clinical trial is based in the understanding that the preparatory regimes for Hurler's kids don't need to be as strong as regimes for leukemia and cancers.  The doctors don't need to kill off all of his bone marrow, just enough to make room for the donor cells.  This regime tries to lower the total toxicity while still clearing out enough of Ethan's original cells.   The drugs in the protocol are Treosulfan and Fludarabine combine with a low level total body irradiation.  The protocol's been used in Europe for a while and the trial's been ongoing in the US for a bit for kids with other diseases.  Ethan will be the first Hurler's kid treated under this protocol. 

The good news.  The very, very good news is that Ethan is continually impressing us with how intelligent, strong and determined he is.  If the first transplant engrafts successfully and they don't need to do a second round of chemo and a second transplant, then I'm very confident that the can survive this.  He is a fighter and he will make it through.

In other news, and to bring everyone up to date, Ethan was released from the hospital last Monday.  He was in the hospital because of a staph infection in his central line.  And, looking back, I have no doubt the staph infection was caused by inadequate sterilization procedures on our part when we flushed his lines with an anti-coagulant every day.

Even though he's home, he's still receiving IV antibiotics for one hour 3x per day. Needless to say, we've improved our processes at home.  But now, we're messing with him a whole bunch more to do the antibiotics treatments.  

Frankly, administering antibiotics infusions via a central line in my kid's chest is not something that I ever wanted to do, and I feel pretty inadequate knowing that we screwed it up once and could screw it up again in any number of ways.

Fortunately, Ethan is dealing with it well. He doesn't fuss during the infusions and if he's awake he'll walk around playing as we follow behind with this infusion pump and try to keep the coard untangled.

The other issue we were dealing while we were in the hospital was Ethan's positive flu test.  The initial test came back positive for para-influenza, a very mild flu.  But we've been on pins and needles because they won't admit him for transplant until the flu is clear.  They did a follow-up swab last Thursday, and we just got the results the all-clear this morning. 

So we've been a little busy with a few family visits here and there, and trying to clean the house a bit.  And in the meantime, Sarah and I are trying to stay healthy.  Friday into Saturday, I felt a little cold coming on.  So I slept 8 to 8 Friday and Saturday night, and think I've got it beat.  

Overall, it does feel like we're about to go through a door.  And the coming weeks may be pretty rough.  But then we'll be through.  We'll be through the last 4 months since the diagnosis.  We'll be through however long the transplant and recovery takes. And then we'll have both of our boys and we can go forward again.  There will be a lot of surgeries and procedures in our future.  But if we can get through this, then we will take those thankfully. 

I think that's about it from here.  Thanks for your thoughts and prayers.

I'm off to go play with my kids. 

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