Wednesday, September 24, 2014

Consultation in Minnesota

Esther and I spent a good amount of time after yesterday's consultation discussing which doctor and hospital to move forward with.  We ended up sticking with our original plan, which is to bring Ava to Seattle for the cord blood transplant.  

We got home from Minneapolis today just in time to get the kids settled and our plan was to head out to our small group Bible study.  But then Gwen started showing some very alarming symptoms: respiratory distress, vomiting, fever.  We've been keeping the girls separate, and if Gwen gets any worse, we'll take her to Lutheran General.  

The consultation at the University of Minnesota was incredibly helpful.  To be able to consult with the high risk leukemia specialist ten days earlier than planned was a big encouragement.  We were so eager to hear about their unique protocol for doing transplants for those who are MRD positive, ever since we heard last Saturday that Ava's leukemia levels remained the same inside her bone marrow.

We ended up concluding that this special protocol being offered was not for Ava.  But the doctor actually did not recommend his protocol for Ava.  Instead, he recommended one more cycle of a different chemo drug before heading for transplant.  This was very eye-opening for us, because we had been thoroughly convinced that any further delay in transplant would be too risky.  But to summarize his insight: do we put the risk on the front end (by delaying transplant in order to lower the MRD levels even further with chemo), or risk it at the back end (by having a higher chance for relapse due to doing the transplant with positive MRD)?

He thinks that there's a drug that Ava hasn't tried before, which might lower the amount of leukemia in her body.  Lowering the level from .03 to .001 is critical to having a successful transplant that does not end in relapse.  (A second transplant due to relapse is often unsuccessful.)  So we have benefited greatly from this visit, and are currently working out a way to get to Seattle for the transplant as soon as possible, but try to fit in a 5-day course of this chemotherapy drug before heading out.

For Esther and I, the decision to stick with Seattle comes down to one key factor which we believe gives Ava the best opportunity to have long term disease free survival. Ava is eligible for the stem cell expansion program in Seattle, which is not being offered anywhere else.  It was designed to make cord blood transplants safer.  But it's still in the early phases of development, and can only be offered through a randomized selection process.  The doctor herself actually does not know what the percentages are for being selected.

Although the dice is rolled and it seems we are leaving the results to chance, Esther and I believe that God is not in the least limited by what may seem random to us.  We have been asking that God be involved in this computerized algorithm the same way He is in all things: more purposeful and prepared than we could ever fathom.  So we regard Seattle's stem cell expansion program as one way that plays favorably into Ava's upcoming transplant procedure.  It's a chance that we don't want to take for granted, and what we believe is part of God's plan for Ava.  

If she doesn't get selected for it, going to Seattle involves FAR MORE than just that added treatment.  We are already beginning to be hit (in a very good way) with the world of provision and care that we know will change our lives in deeply beneficial ways.  We are so blessed by those who have already reached out to us from Washington, and for friends and family who have been connecting us to such great people there.

As we prepare to go, we have so many people to thank.  Our church (NSCCC), family (the Lee's), relatives (from all over), friends (old and new), Ava and Gwen's school (Pritchett Elementary) - we have been sent off with absolutely nothing to worry about other than being by Ava's side the whole way through.  We are SO thankful for each of you.

Please keep praying for us:

- for Gwen's health
- for Ava to be selected for the stem cell expansion
- for wisdom regarding one last cycle of a new chemotherapy 

If we choose to go with it, that 1) it would drive down the MRD even further BEFORE the transplant, and 2) all common and unlikely effects would be avoided, most notably any neurological (brain) damage.  


Anonymous said...

Have a good trip back and please keep us posted for the new updates. We'll keep praying for your family.

Gwynneth said...

So I noticed on FB that a couple of people have asked on your behalf if they know anybody renting out an apt/condo near the Seattle hospital. I have also shared it on my FB. I just wanted to pass along an apt finder I have used is called If you don't already know about it, it aggregates through Craig's List,, etc for all the listings; you put in the filter your price range, number of bedrooms, etc. Anything that meets your criteria will show up as a pin on a map.

Bill Moy said...

Hi Ava!

This is Brennan. Do you remember me from preschool? I hope you are well. I pray for you every night. I have a joke for you:

What did the ocean say to the shore?

-- Nothing! It just waved!

Pretty funny, huh?

Love, Brennan Moy

royandlucy said...


Hi, my name is Roy Hwang, Joyce Lee's brother. She shared your situation and might have some information that may be of assistance. I have a coworker who is moving from her rental house at the end of next week (Fri, 10/03). She lives just a 5 min walk from Children's Hospital. I asked if she could inquire about availability and if the LL would consider a month-to-month lease. The LL would, but would like a sense of how long it might be (i.e. 2 -4months? 6-8 months?) It's a 3 br 1.5 ba home for $3200/month. If you are interested, I'd be happy for forward the info along.


Roy Hwang

jaemom said...

Roy, can you email me? Or maybe I can just get your email from Joyce. But you can reach me at: naisula (at) gmail (dot) com. Thank you!!