Playtime's Over, Time to Get to Work

Hi all,

Ethan had his CT scan on Monday.  The lung nodules are unchanged, suggesting that it's not an active infection.  Ethan has been cleared for transplant and will be admitted tomorrow to start chemotherapy.

Ethan will be on a 12 day, reduced toxicity regime consisting of 11 days of chemotherapy and one dose of total body irradiation. He'll be inpatient from T-12 until he's stable and his white blood cell count returns to above 500 for at least three days. That could be as early as T+20, but a more realistic guess would be between T+30 and T+45, assuming everything goes reasonably smoothly.

One concern Sarah and I have wondered about is whether or not this reduced toxicity regime will kill off enough of his existing marrow to allow the new marrow to engraft.  Ethan's first regime, in Oregon, was a reduced toxicity regime, and his enfraftment peaked at 90% before slowly petering out over the last year. We're a little gun shy and don't want to go through another reduced toxicity regime just to have the same thing happen again.

We talked with Dr. Lund about this and he said that usually when a patient's transplant fails, it goes within the first 60 days or so.  In those cases, since the original donor marrow has already been removed, they're able to use a serotherapy to prepare the patient for a new unit of donor cells.

In this case, Ethan reverted to his own donor cells so that they need a reasonably strong preparatory regime to kill off his existing marrow. However, the toxicity from chemotherapy stays in a person's body for a period of 3-5 years post transplant and the toxicity is cumulative. They don't want to use the same full toxicity regime from the first transplant out of concern that his body couldn't handle the cumulative toxicity.  (Honestly, we forgot to ask how excessive toxicity manifests during transplant.  I assume that it would be problems with liver and kidney function, but don't know.)

Ethan is the third patient in this situation that UMinn has treated with this regime.  The first patient is post transplant with 100% enfraftment.  The second patient just had his transplant in January.  I believe Dr. Lund said that he's also 100% engrafted.  However he hasn't reached T+100 and his case has a number of other complicating factors.

Assuming that the nodules in his lungs are not active infections--and everyone agrees that is unlikely at this point--than Ethan is is really good physical shape to complete this transplant.  He's strong and his energy is good, and all of his major organs are in good shape.  Having said that, I expect that this transplant will be more difficult than his first.

Ethan came through his first transplant really well.  He never needed to be intubated, he was never in ICU, he only needed to be on IV nutrition (TPN) for three days.  Aside from the minor fact that it failed, it went really well. This time, I expect that he'll be in ICU at some point, I wouldn't be surprised if he needs to be intubated for some period of time.Add to that the normal concerns over kidney and liver function, blood pressure, heart rate, infections and everything else, I expect that it's going to be a bumpy ride.

In the end though, I've come to think of bone marrow transplants as educated crap shoots.  What we're trying to do to Ethan's body is completely unnatural.  The side effects of the chemotherapy and radiation, graft versus host complications, the side effects from the drugs they give him to treat the other side effects. It's impossible to predict or list what might happen while he's inpatient or what we'll be dealing with six months, a year or even 5 years from now. But he's healthy and strong going into this and he's at the best hospital and with the best doctors.  He's got the best shot he can have.

When we go in, I'm going to try to update this blog at least every other day.  And I'm going to try to take and post a lot of pictures. In fact, some posts may be mostly pictures.  It's hard to describe a transplant and side effects in words.  Some of the pictures will be fairly graphic. A lot of times, pictures can convey a level of immediacy and details better than 3 pages of text.  I hope and think that the pictures will be informative both for people who are following this blog to keep up with Ethan and for other families that are heading into their first transplant and wondering what it's like.

While Ethan is inpatient, I'll be with him six days a week.  Sarah and I will each take one weekend day, and Sarah will likely pull night shifts in the hospital once a week so that I can come back to the house and get some sleep.  Sarah's hands will be very full here at the house with work and spending time with Caleb.  We hope that she'll be able to post some updates "from the house" and let you know what's going on back here.

Tonight, Sarah and Caleb have tickets to the circus through HopeKids.  It should be a fantastic time. I've also posted some recent pictures on Facebook.

Okee dokee, Ethan's up from his nap and wants to climb on me.  Gotta go!


Karla in MN said…
I am glad that you will be keeping us up to date more frequently now taht Ethan is starting Chemo...praying for complete succes! The Baca Family is rooting for you , Ethan!
Anonymous said…
Good luck you guys!! I will be following this and watching how it goes. I really hope it goes well this time around :) <3 from sunny California!!! -Angela and Emily Sawyer (MPS3A)
GOOD LUCK. GOOD LUCK. GOOD LUCK. My heart's racing thinking of you guys and what amazing feat Ethan and the rest of you are about to undertake. Our thoughts are constantly with you and I will be hoping and willing that the bumpy ride has a few smooth areas for a breather. I am looking forward to those cold beers you promised whilst all our boys play together. Stay strong and keep positive and if I have learnt anything from our journey it's to believe in what little hope there may be. Lots of love and hugs to all of you xxx
Wendy B. said…
Ok, guys....the next leg of the journey begins tomorrow. I am flexing my prayer muscles and getting all good wishes in line to send your way. Ethan, You are a very special angel and I am so very honored to have been part of this incredible voyage with you. May the doctors and nurses have strong wisdom and loving hands and may your journey into this new land be short and victorious, Little Man. Good Luck to everyone! Go, Ethan, Go!!!!