UMinn for Transplant



Yesterday evening, Sarah and I learned that our HMO had approved our request to have Ethan's second transplant done at the University of Minnesota Children's Hospital.  This is a big turn around for us as we had long thought that we would stay in Portland at Doernbecher's Children Hospital.  The decision brings with it at once more hope for a successful transplant and more uncertainty about our life in general.  

We have known for a long time that UMinn is generally regarded as the foremost Hurler's center in the country.  They do far more transplants there and are on the leading edge of research into new treatments and therapies.  Through Ethan's first transplant and in preparing for his second, we asked doctors here and doctors there if there was any difference in protocols and outcomes between here and there.  In response, we heard that the protocols are widely agreed upon and that there isn't enough data on outcomes to point to any meaningful difference.

Then a few weeks ago we got some new information from an unexpected source.  I was on the phone talking with Dr. Klane White at Seattle Children’s Hospital about that hospital's MPS team and the advantages and disadvantages of seeking Ethan's post-transplant Hurler's care there.  Dr. White is a unique individual in the Hurler's world.  He's an orthopedic surgeon whose daughter Susanah suffered from Hurler's, went through two transplants, and most unfortunately passed away at age 9.   Dr. White is also on the board of directors of the National MPS Society.  So, Dr. White's seen this disease from just about every angle.

After talking about the MPS team at Seattle, the conversation turned to Ethan's second transplant.  Dr. White told us frankly and explicitly what no one had told us before, that there may be general agreement on the transplant protocols, but there are a range of potential post transplant complications that are Hurler's-specific. Patients often need an experienced Hurler's transplant team to interpret what's going on and to respond effectively.  He also told us that from what he knew, the transplant outcomes at UMinn, while certainly not guaranteed, are the best in the country.

Sarah and I had long ago decided that we would push for a referral to one of the big MPS transplant centers if we got information that it would make a difference, and suddenly we did.  For us, there's no way that we couldn't act on that.  If Ethan dies from transplant complications, we need to know that we did everything we could, that we gave him the best chance. There's just no other way to look at it.


And yet, even though we're comfortable that it's the best decision we can make, I think we're all scared by the change.   At best, it will be a 3-4 month stay in Minneapolis.  At worst, if significant complications develop, it could turn into 6 months or longer.
We know that the four of us will go out together, that we'll continue to fight this disease as a family.   But Caleb is scared about changing schools, and we are scared about trying to juggle our jobs and responsibilities here in Oregon for an indeterminate length of time from Minnesota.

For Caleb, I know this change will be difficult and stressful, but, there may be a good side, too.  The Ronald McDonald House Twin Cities has a K-12 school program on the property for patients and their siblings.  I think it would be really good for Caleb to be able to spend some time with other kids who have brothers or sisters who have serious illnesses.

For Sarah and I, a lot of our uncertainty comes down to whether or not we end up having enough FMLA time to get us through the hospitalization period.  We're both extremely fortunate to have very good and supportive colleagues and organizations behind us, all of whom have done everything they can to provide as much support as possible.  And both organizations have been very helpful in working out telecommuting agreements.  However, we both used up a lot of regular leave and FMLA over the last year.  We think we will be able to make arrangements so that we'll have enough leave for a 3-4 month hospitalization.  But if it goes beyond that, we may need to make some very difficult decisions, both for our sake and for the sake of our employers.

Last time, we tried to telecommute from the hospital.  That worked okay because we had great help during the day, so that Sarah or I could go to another room and work.  I will say that it was pretty surreal at times going from a discussion with the doctors about Ethan's latest complication to a phone call from a colleague at work asking a question about something that seemed a million miles away.  But we knew then that about 20% of kids need a second transplant, so telecommuting allowed us to shepherd at least some of our leave up to this point.

This time, I've decided that I can't telecommute while he's in-patient.  I just can't keep those plates spinning at that point, and need to be focused entirely on Ethan.  So, I've worked it out with my office that I'll take about 9 weeks of leave, which will hopefully get us through the in-patient period, and then telecommute after that.  If Ethan is in the hospital longer than 9 weeks, then Sarah will take leave when mine runs out, and we'll go from there.

After he's released from the hospital, there will be a period of, I'm guessing, a couple of months, where we're checking in at the hospital 3-5 days a week, and he will almost certainly be readmitted at least once or twice due to complications, before it's all said and done.

Logistically, I think it will be okay.  Our biggest concern are our two dogs.  The reality is that with all of the demands on us, the dogs are a challenge at the best of times.  I'm not quite sure what we're going to do with them now.  Unfortunately, our dogs are humane society dogs and both of them have their own "issues".  Neither of them likes other dogs, one of them doesn't particularly like kids, and the other one is just generally neurotic.   Sarah's folks have offered to take them while we're gone, but they have an elderly dog of their own, and our dogs don't play too nicely with theirs.  I think we’re planning on trying them out with some supervised visits to see if maybe they might get used to each other, but if they can’t settle in together well, having them in the same house together for some period of months would be less than ideal. And most of the other "dog" people that we know who might take them, have dogs of their own already, so it's the same kinda thing.

Personally, I'd think our best option is to give the dogs to the humane society to see if they can be placed separately in new homes. But they're 12 and 11 years old, and between their age and their issues, I'm not hopeful that they would find new homes easily.

Aside from that, I think we'll be okay.  It looks like we're going to drive out--Oregon to Minnesota in the middle of winter should be an adventure in and of itself.   We were talking about a late December/early January admit with the team at Doernbecher.  I think UMinn will want to keep to that schedule, but we've got a teleconference scheduled with them on Monday and will know more then.


I also expect that one of us will fly to Minnesota with Ethan at some point in November for a full pre-transplant work up.  But again, we don't have any specifics on that yet.  

In other news...
Ethan's ear infection reoccurred, so we're keeping an eye on his ears.  And Ethan's been on steroids to combat the anemia.  The steroids have screwed with his sleep schedule, so we're taking turns sleeping with him in the guest bedroom.  The steroids have also caused him to pack on a lot of weight.  When he was admitted for the anemia two weeks ago he weighed 30.5 lbs, two days ago he weighed 34.8 lbs.  Time to break out the next size up of Caleb's old clothes!

But aside from that both boys are doing great.  We got down to Silver Falls State Park last weekend for an annual family get together, so they got to run around with their cousins.   Caleb's doing great in kindergarten and keeps bringing home "Viking Victory " cards from the teacher saying what a great job he did. Ethan's not talking too much more than he used to, but a few times a day he'll give us a word.  Yesterday, when I picked him up from daycare, I was greeted with a great "Daddy!" which was wonderful to hear.  And if you ask him if he wants a cookie, the "yes" that you'll get in response has become a lot more clear.  This morning’s word was “book.”  And about every other weekend, Caleb's got a birthday party to go to or a play date, so we're all having fun!



Caleb's outfit for the first day of school.  He picked it out himself.
(We tried to warn him!)


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