Saturday, September 21, 2013

Peace In Hard Times

It had been a frustrating and discouraging time since I last wrote -- at least until recently (spoiler alert!).

A super-thick blister (from the chemical burn experienced during the hand and foot syndrome) that covered Krista's whole heel came off, leaving behind tender new skin without a lot of padding.  She can walk on it OK, but not for too long.  Another blister on the forefoot is getting ready to come off.  Hopefully that won't hinder her getting around.

Krista was scheduled to get a biopsy last Thursday (Sept 12), but her platelets were low so she had to get a transfusion first.  Unfortunately, that morning she woke up with a fever -- and that means an infection, and another check into the hospital.  That was hard on her, as she was feeling discouraged with how things have gone so far.

The biopsy turned out with good news: no leukemic cells!  It also revealed that the marrow had some scar tissue which can cause white blood production problems.  The scars were from chemo damage (not from the infection, thankfully), and were likely to be the cause of much of the pain she experienced in the previous week.  Since there were no leukemic cells, the oncologist felt like it was time to begin Neupogen to increase white blood production.  This also causes a really weird bone pain which added to the discouragement.  But the Neopogen was effective, and her white counts shot up and she was released after week in the hospital.

Just as she was at the end of the hospital stay, we began to get news from the City of Hope.  There is a confirmed donor, and the match is perfect -- a 10 out of 10! We have an appointment to get all the details Wednesday.  Here's what we know so far.  Pre-treatment begins October 21, and will last for 9 days.  The donor will have the stem cells extracted on October 29, and they will be shipped overnight for the transplant, which will take place on October 30.  This is a mixed blessing as it means she will share a birthday with Trevor -- and it means we will miss Trevor's birthday this year.  We're starting to work out the details of what to do with the kids and work, so please pray for wisdom to make good decisions there.

In the past couple of days, there have been some major improvements.  Krista has discovered some more effective ways of relieving the pain.  She's also been encouraged in the Lord and is starting to experience the peace that was so hard to feel while going through all of that.  She's also been participating in some of the activities that the Cancer Center offers.  All of this is making for a much better outlook.  With the memories of how things went last time (and the unstable progress she's been having already this time), it's hard not to give in to the fear of things going badly during the transplant.  Please pray for that ongoing peace that goes beyond understanding -- we both really need it now.

Thank you to everyone who has been helping us out.  We really appreciate the meals and rides and everything else -- it's really helping us to make it through this.  Thanks Jaime, Mia, Lori, Marsi, Dawn, Carrie, Cheryl, Linda, Jill, and Ruth -- you guys are awesome!

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
(Philippians 4:6-7)

Sunday, September 8, 2013

Fun Enough

The marrow drive went really well last weekend.  (Here's a link to the local ABC news report about it that aired Sunday evening after the event.) Page from the National Marrow Donor Program called us to say that there were 72 new registries from the event -- and we're aware of a few more who weren't able to make it and are signing up individually on   (You have to be between 18 and 44 to sign up, but if you've done the cheek swab and are registered already you don't have to re-sign up -- they keep you in the system until age 61.)   Apparently, with all the new entries in the past 4 1/2 years, the Marrow Donor Registry has more than doubled in size, but still the odds of any individual in the registry being called is about 1 in 500.  Matching is still difficult, so every person in the registry improves the odds of someone getting a good match.

We have not yet found a match for Krista, but they're working on it.  It takes about 2-3 weeks for the new registrations to be processed and compared.  In the meantime, the City of Hope has contacted a couple of people who were already in the database and are potential matches that are still available.  There's at least one more stage of confirmation they have to go through before any of them can be considered "the donor". So it's definitely not a done deal yet... and there's one strange potential complication:  the ones they identified were specified according to the blood type Krista used to have, not what she currently has.  We're talking with the doctors trying to figure out if this is going to be a problem or not.  The kind of match they're looking for is a genetic HLA match, so it's not likely to have changed due to the transplant since HLA matching depends on tissue-type as defined by chromosome 6, not by blood type.  Still, we were instructed to provide a newer post-transplant sample for matching, so trying to verify that there hasn't been a error made.

We're not sure what exact criteria will be considered for finding the match this time.  Each facility has its own policies.  At UCLA, almost five years ago, we were told that the cord blood used matched 5 out of 6 antigens.  This level of matching is now being questioned by some who want to match 10 antigens or more.  We don't know where City of Hope stands on this yet.  But they are supposed to be excellent, doing the second-most number of stem-cell transplants annually.  (The facility that does the most is supposed to be a hospital in Seattle.)  From what we hear, City of Hope is more choosy than most when it comes to matching, and that is why they have their own in-house matching staff.

So now we wait, and life keeps going on while we wait.  Krista and I celebrated our 18th wedding anniversary on Labor day.  We had plans to go out to a nice dinner, but nausea and lack of energy made it better to skip it.  The nausea was a recurring theme this week, and that made another fun evening necessary to cancel also.  We had tickets to the Fun concert tonight (Saturday) that we had purchased months ago, and even with craigslist we hadn't been able to unload them until Friday when a friend bought them for her daughter.  That was perfect timing, as we had thought of going anyway -- maybe arriving late and leaving early -- but it turned out that Krista was having a rough night tonight and would not have been able to enjoy it as she would have wanted.  Instead, we played backgammon with her in bed.  How fun is that?

This process is never what we want or expect it to be, but it's amazing to see what God is doing with and through it.  Everyone has been so generous in continuing to bring meals Monday through Friday (thanks Verna, Carrie, Kim, Mitsuko, and Connie!), so many generously offered their help at the marrow drive, and we've even received some really great financial donations to help with that extra burden.  Thank you all so much -- and may you all be blessed as much as we are by your ongoing care!

Better the little that the righteous have
than the wealth of many wicked;
for the power of the wicked will be broken,
but the Lord upholds the righteous.
The blameless spend their days under the Lord’s care,
and their inheritance will endure forever.
In times of disaster they will not wither;
in days of famine they will enjoy plenty.

(Psalm 37:16-19)