In the News

Krista finished her second round of chemo last week, but ran into complications with hand and foot syndrome.  That means that the chemo leaked out of her capillaries in her hands and feet (especially her feet) and caused chemical burns.  The burns were excessively painful and made it so that she was unable to walk for a while.  She came back home this Thursday, barely able to walk -- but she's making constant improvement.  There's also the lack of appetite, nausea, and inflammation that she's still battling with -- and there's a end-of-summer heat wave so our airconditionless house isn't comfortable right now.

On Friday, Krista had an incredible opportunity to share her story with Beth Farnsworth of KEYT news in Santa Barbara (the local ABC affiliate).  She came to our house with a cameraman and interviewed her for only about 10 minutes -- long enough to tell her story and promote the upcoming marrow donor registration event.  Of course that was edited down to just a sound bite (and switched reporters), but the result was a nice piece to get the word out.  You can view the story at http://m.keyt.com/news/bone-marrow-drive-at-calvary-church/-/19201834/21731746/-/2rm9x2/-/index.html.

Krista with Beth Farnsworth

If you're in Santa Barbara on Sunday (Sept 1, 2013), please join us at the registration event.  It's at Calvary Chapel Santa Barbara from 10:30 am to 1:30 pm.  The address is 1 N. Calle Cesar Chavez, Suite 21. Registration is simple: you just swab the inside of your cheek with four sterilized Q-Tips (that they provide). Krista is aware of 200 people at the City of Hope that are awaiting a marrow transplant and each new registration makes the odds of finding a match that much better.  The registry is used world-wide, so it is useful to have any and all ethnicities and ethnic mixes get registered.  The only requirement is to be between 18 and 44 years old, as those are the ages where the donor's cells are most effective.

Not everyone who registers will be matched, but those who do can be part of saving a life.  Registrants who end up being a match can have their choice of how to donate the stem-cells that are so vital: either from the blood stream or from the marrow in the bones. Both options are minimally invasive and there is little pain.  For the blood stream option, the donor receives shots for five days before the harvesting to increase the stem-cell count in the blood stream.  This causes some bone aching symptoms associated with the increased production.  The marrow option can be done under general anesthesia, and it's similar to the biopsies that Krista gets regularly.  That's the extent of the involvement for the donor.

By the way, if you're coming to the registry I also invite you to the church services at Calvary Chapel which are at 9:00 am and 11:00 am if you are interested.  The church is very friendly and newcomers are welcome anytime.

On an unrelated note, the kids started classes at Providence this week and it's been a really good transition so far.  I'm so excited for the opportunities the kids are getting there.  The schedule is a new challenge for me, getting them to school while juggling meetings with my European co-workers.  Thankfully, my work has been very flexible with this so far.

On another unrelated note, we have been really appreciative of the meals that people are bringing.  All of his is such an amazing amount of stuff to juggle, it really helps to not have to think about preparing dinner. Thank you Gentry, Belinda, Cheryl, Gina, Stacy, Jill, Emily, Rizwana, Amy, Kathy, Susan, Janet, and Ellie who all brought wonderful meals for us since the last time I mentioned it!  The meals have been great and we're really thankful for them.  Sometimes it's hard to express this when they're delivered, but know that we're really grateful.

Krista's platelets have been high until recently and now they are decreasing again.  Please pray that they stabilize until Tuesday when she gets her next blood draw.  Thanks!

A generous person will prosper;
whoever refreshes others will be refreshed...
The fruit of the righteous is a tree of life,
and the one who is wise saves lives.
(Proverbs 11:25,30)

Surprise!

Krista surprised us today by showing up at home!  Krista found out when she woke up this morning that she could go. Heather and Eric Weitzel were visiting her and they conspired together to keep it from us.  Doesn't she look great?  You'd never know she is going through chemo and has a severely weakened immune system. 

Now there's a new regimen of medical procedures for our home. Bathroom is sanitized, sheets are changed, prescriptions are purchased, thermometer and blood pressure monitor are ready. We just have to figure out how to schedule all that now.  Time's short, though... there was a mixup in the chemo scheduling.  The next dose has to start 3 weeks after the first one started.  That means only a few days here at home before she goes back in on August 20.  That's too bad, because it means that she'll most likely be missing the boys starting their first days of school.

“I say to you, get up, pick up your pallet and go home.” (Mark 2:11)

Slow progress

We've been waiting for Krista to be able to come home, but it  hasn't been possible yet.  Her white blood levels have not been growing, and today they were even down again. If the marrow biopsy came back with no leukemic cells they could have given her neupogen to boost white blood production. The labs came back good, but not good enough. Before treatment her sample had 40% leukemic cells; now there are 6%. That shows that the chemo is effective (yay!), but it's not good enough to start neupogen.  So there's more waiting to do until she has begins increasing on her own.

The waiting is tough, and it's been lonely for Krista. We visited twice today. We ate lunch together on the patio, and this evening played cards. Thank the Lord that she's been feeling better today!

Her oncologist wanted to begin the next round of chemo in two weeks, just before the start of school. He's so nice to delay that a few days so that Krista can send them off to school the first couple of days. How wonderful!

 I wait for the Lord, my soul does wait, And in His word do I hope. My soul waits for the Lord More than the watchmen for the morning; Indeed, more than the watchmen for the morning. (Psalm 130:5-6)

Patience, Thanks, and Trust

It's harder to write recently for some reason.  There's so much that's going on and yet progress is slow.

Krista's still in the hospital, though she hasn't had a fever since Sunday.  Her counts are still low.  They're not giving her neupogen this time, because, in addition to causing white blood counts to increase, it can also cause leukemic cell counts to increase.  So it's a slower recovery... and today she was dealing with awful migraine headaches.  She could be returning home as soon as Wednesday, but while it would be great to have her home, I recognize that they are taking good care of her right now in ways we just can't.  So Krista and I continue to try to be patient as we wait for her white counts to increase.  Tomorrow, she's supposed to get a platelet transfusion and a bone marrow biopsy (with sedation).  They're looking to see what progress was made after the first round of chemo.  I think the best outcome is that they find no leukemic cells there -- but even with that they may still want to do another round of chemo in a few weeks just in case.  

Meanwhile, I've been negligent on thank yous... so let's see if I can catch up.

Krista's mother, Janelle, who lives outside of Denver, surprised us on Saturday by calling from the airport -- the Santa Barbara airport!  I knew she was looking into possibly catching a free jumper seat thanks to a friend whose husband is a pilot.  Janelle had said that it usually doesn't work out, but she caught the first flight she tried.  So it's nice to have her out, helping around the house and playing with the kids. Thanks Glenn for loaning her to us for a bit!

My mother, Jan, had come up the week of the first round of chemo.  I'm afraid I wore her out trying to get the house hospital-clean for Krista to be safe to return to as her numbers dropped.   It really was effective, despite the infection -- the doctors said that the infection she got was probably from bugs already inside of her.  With no white blood it's impossible to fight off bacteria that's normally kept in balance by the immune system.  So thanks Mom for staying the extra time -- and I'm keeping up on the cleaning now so we don't have to do the big jobs for a long time!

Katherine Marton has been organizing people to bring us meals three days a week.  That's been really good because I haven't had the time or energy to shop, prepare food, and cleanup.  Melanie, Nancy, Susan, Carol, Regina, and Martha... thank you all so much!  I'm often frazzled at the end of the day and probably don't express it well, but I really appreciate you all and we've been enjoying the food.  It's been just the right amount, too!

Drew Kawiecki is organizing a marrow donor registration drive at Calvary Chapel Santa Barbara on September 1.  If you're between the ages of 18 and 44 and you happen to be in the area, stop by and get registered for free.  It painless and it just might save a life.  I'll put more information in a later post.  Thanks Drew!

And we've been really blessed by Joyce and the great people at Providence Hall Santa Barbara.  We had planned to enroll Adam there for his Sophomore year because it is such an amazing match for him.  (As he put it, "it's just like what we do in homeschool but even more!")  It was a financial stretch to get him there, but with a generous scholarship and some help from my parents we managed to make it.  Trevor was going to continue homeschooling for 7th grade, but we just can't do it like we wanted to with Krista getting treatments.  Then Joyce called me and said that they wanted Trevor at Providence Hall too!  They worked out another scholarship and we're trying to do what we can to cover the rest.  I don't have the final numbers yet, but I really want to make this work!  Providence would be perfect for Trevor too -- he needs an outlet for this performing/acting need he's developed!  We're trusting that God will make it happen one way or another.

I'm not worrying about finances...  but we could use some help in that area.  My insurance (Aetna) was awesome last time but I remember that there's up to a $6000 out-of-pocket maximum before they stop charging me.  (It's an 80% covered PPO plan, so we get charged 20% until we've paid $6000.)  We haven't started to see the bills yet, but they're coming... and if it's like last time, it won't take too long to hit that ceiling.  Plus, the extra education expenses on an already stretched budget!  If God puts it on your heart you can donate to us through our Paypal account.  From what I've seen, that's probably still the best way for us to do fundraising for our medical and schooling expenses.  (Paypal charges some fees, I think 2.9% plus $0.30 per transaction -- which is less or equal to the medical crowdsourcing fundraising options that are so popular right now.)
Thanks again for your prayers and kindness... it makes a huge difference as we face this beast a third time.

How abundant are the good things that you have stored up for those who fear you,that you bestow in the sight of all, on those who take refuge in you.In the shelter of your presence you hide them from all human intrigues;you keep them safe in your dwelling from accusing tongues.Praise be to the Lord, for he showed me the wonders of his love when I was in a city under siege.In my alarm I said, “I am cut off from your sight!”Yet you heard my cry for mercy when I called to you for help.

(Psalm 31:19-22)

What?!?!

Can you believe that it's almost five years since we began this blog? One of the earliest posts was from September 22, 2008, where we discovered that Krista had a relapse of AML leukemia. We went through the rocky treatment and recovery together and had the hope that if we could make it 5 years out from the stem-cell transplant that we could finally call it a cure. The transplant was four-and-a-half years ago and it is with great sadness that we have to let you know that we won't be able to call it a cure. The leukemia is back.

What?!?!

It turns out that leukemia can sometimes hide out in organs other than the bone marrow, and somehow that's what it seems to have done in Krista's case. It's strange because there was evidence of low-grade GVHD, which was supposed to attack residual leukemic cells. How could this happen? So far we don't have any real answers. But, it does not appear that she is alone in this happening. We attended a BMT InfoNet symposium in April on living with the effects of a bone marrow transplant. There we met many wonderful survivors and doctors and got connected to a great online resource -- and have now talked with a few people who have had to redo their first transplant.

After the confrence, Krista got inspired to her change care center to Dr. Nakamura at the City Of Hope in Duarte, CA, to manage her medicines and get better control over ongoing complications of the transplant. The care there is amazing, and they really treat you like a human being there -- not just a number. They began coordinating care with other experts to come up with a cohesive plan of action. Since she was having regular labs again, they caught a drop in platelet levels early on. Mid-June they were around 125,000 (normal range is 150,000-450,000) but they were dropping each week. At first we suspected it might have been due to an antibiotic she had taken that could cause a reduction in platelet count. But after many weeks of watching them drop, Dr. Nakamura became suspicious that something else was going on. It might have been a new symptom of GVHD, as if her new immune system started attacking the platelets. But GVHD is usually diagnosed after eliminating other possibilities... and the last possibility was that leukemia had returned. To eliminate this possibility, on Tuesday, July 23, he had her go down to Duarte to get a bone marrow biopsy.

Ugh!

Krista expected the biopsy to be a horrible experience, but the City of Hope made it a wonderful experience -- the sedation made the procedure painless! (Later when the pain killers wore off it was a different story.)
  It was a strange experience being back in a waiting mode to hear the results. We drove back to Santa Barbara and I stepped out to pick up Adam from the orthodontist. When I got back, Krista was in tears. Dr. Nakamura had called and said that the blood samples had strange cells that were consistent with leukemia. She was told to wait until Thursday to get confirmation from the biopsy.

The finding was such a shock. We had a week-long camping trip scheduled the next week, and we were imagining the awfulness of having to spend it in the hospital. We weren't going to let this diagnosis interfere with our family time, and Krista felt like she needed to experience nature in a big way. So we made an unplanned road-trip north -- not really having a destination, but wanting to go at least as far as Cambria or Big Sur. We figured we'd just find a hotel for an overnight stay when we got "there". We didn't think that we were doing this at the peak of summer vacation! There was one room at a hotel in Cambria, but $200 seemed too expensive so we kept on going. We saw the elephant seal breeding grounds near San Simeon and shortly thereafter we got a call from Dr. Nakamura with an early confirmation from the biopsy that she did indeed have leukemia. We continued north through the amazing cliffs of Big Sur -- barely. The fog was super thick and the roads were slow because of construction projects. Through the fog there would be occasional moments of clarity -- the sun breaking through or an amazing panorama. There aren't many places to stay there and the few we found were booked. We ended up in Monterey and after a frustrating look around settled for a $150 room at the Super 8! (Which in Monterey is a decent hotel otherwise we would have slept in the van.) As we settled in we were able to reflect on the trip and realized that the brief glimpses of beauty made the trip worth the pain. I think that was something the Lord wanted to speak to us about the treatment Krista's been through and would be resuming. It has been (and may continue to be) difficult, but there are moments in-between that shine and make the struggle worth it.

The treatment plan is to get Krista into remission with chemo and try to find a matching adult stem-cell donor to redo the transplant. Apparently, adult stem-cells can be more potent against leukemia than cord blood, but the match really needs to be perfect because of an increased effect of GVHD with a lesser match. At least four-and-a-half years ago, there were no perfect matches with either adult or cord blood, but things may have changed in that amount of time. Still, we are continuing to ask people to get registered or to host a bone marrow registration drive to help increase our chances of finding that perfect match.

The plan is already in motion. The first round of chemo began Tuesday, July 30. The drug of choice is a pediatric chemo that is known to be effective for adults, even though it doesn't have the FDA seal of approval for adult use yet. It's supposed to be a gentler way to go, since a repeated dose of the original chemo would be too harsh at this point. The doctor says that Krista might not even lose her hair with this one. (Some people have asked if it's a lower dose -- no, it's the same amount, just a different kind of medicine.) The chemo is sometimes known to reduce blood pressure, so they started off being very cautious. That had unfortunate consequences, as the first dose made for an excruciating night. Her blood pressure was fine, so they adjusted the pain and anti-nausea meds the next day and the remaining four doses went much smoother.

Krista was sent home Sunday to have more comfortable surroundings while her lab numbers came down. That was supposed to take about a week, but unfortunately today she had a fever with almost no white blood count. So now she's back in the hospital, getting antibiotics and being watched for any changes.

That's enough for now... Thanks for your prayers and support!

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11)