Day 5: Go! Fight! Win!

Saturday was going to be a big day, and I was hoping to wake up early enough to miss traffic and make it to the hospital with enough time to decorate before the last dose of chemo. My cell phone has an alarm but I didn't realize that it was in silent mode when I went to bed last night. The alarm went off, but I didn't hear it and woke up later than I wanted. I suppose that I needed the rest. Fortunately, the traffic was pretty good (only one 2-mile stretch of stop-and-go).

The boys and I spray-painted some pine cones last night to make them compatible with the hospital environment. The plan was to hang them between a drum-cymbol stand and a IV drip with fishing wire. Plus, they had picked out some football-themed party supplies to decorate the room. I brought all that stuff up to the room, but quickly had to remove the pine cones. The paint had an odor because it was too fresh. You can see the rest of the decorations in the pictures posted here. It's not much, but adds a little fun to an otherwise unpleasant environment.

The last dose was a bit late, so I was done decorating with plenty of time to spare. I went downstairs to grab a sandwich and got a text from Krista that they started the premeds already. 

The chemo only took about 20 minutes to go in, but Krista was required to ice her mouth for a full hour to prevent mouth sores. She was diligent to chew ice the whole time. It doesn't seem like much, but if you can imagine the "brain freeze" you get from drinking a smoothie you can appreciate the feat a little bit better. Her mouth was frozen most of the time, yet she kept going. At one point, she encouraged herself looking at the decorations, saying "Go! Fight! Win!" The nurse helped her through the tedium the last 10 minutes by giving her a Popsicle they found in their refrigerator. She had blue lips from the food dye in the Popsicle, but no mouth sores.

She napped a bit in the afternoon, and needed pain and anti-nausea meds at various times. But for a window she felt good enough to get in a few games of backgammon with me.

So far it's looking pretty good, even though it doesn't feel so good for her. Blood counts are on the low side but stable. They will be dropping before the transplant since the chemo is still working in her body even though no new chemo is being introduced.

It was a good battle today, and we thank the Lord for the training he's put us through that has helped us to endure it. What might he be training you for? Go! Fight! Win!

Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air. No, I strike a blow to my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.
(1 Corinthians 9:24-27)

Day 4: Moving On Up

Krista got to move up to the 6th floor today. The new room isn't that different than the old one. Roughly the same size, roughly the same view. No migraines today, and her kidney function is getting better. Thank you Jesus!

I'm heading down to City of Hope early in the morning. Now that she's in the new room I can put up the decorations the kids and I picked out for her: some football themed party supplies and shellacked pine cones we brought back from Big Bear. Just a few things to bring color and some of the outside world into her room.

The last dose of chemo will start tomorrow around 11 am. The medicine they use for that dose is different than the others -- this one will be much stronger. The nurses have been prepping Krista for an unpleasant experience. The dose will take about 1/2 hour, but they say that she will have to suck on ice chips for a full hour. This medicine causes swelling in the mouth capillaries and the ice chips help counter that effect. But it's not going to be easy. That's another reason for me to go down. Please pray that it all goes well.

This new kind of chemo is going to do the job of killing off the bone marrow in preparation for the transplant on Wednesday. There's not going to be any radiation this time, because the oncologist believes it isn't fully necessary or safe for Krista after all she's been through.

Thanks to Regina for bringing dinner tonight. And thanks to everyone who helped with rides for the kids this week. I'm working on rides for next week, and so far it's looking good. Glenn and Jannelle are staying with the kids at home again this week. That's great because it allows me to be more flexible in case I need to extend my stay with Krista. We'll see how it goes and how long I may be needed down there. It's interesting that Jesus answered the disciple's fears with a discussion of rooms in heaven. I'm going to settle my heart today with this thought:

[Jesus speaking] "Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you?"(John 14:1-2)

Day 3: Start the rollercoaster

The roller coaster has started up again.  Krista told me this morning that the blood tests this morning have shown some inbalance in kidney function.  The doctors suspect that this is because of the antiviral and antibiotics she is taking, so they are changing those and possibly even reducing the amount of chemo she's getting.  On top of that she got another migraine.  Fortunately, they were able to alleviate the migraine by the end of the day.  She sounded better when I talked with her tonight, though a bit tired.  Still, she has to stay up til 10:30 when they'll start the fourth dose of chemo.  Hopefully tomorrow her blood tests will show some improvement.

Krista also said that they were going to change her room up to the 6th floor today, but something happened and they changed their minds.  I'm planning on going back down Saturday, without the boys, and hoping that she'll be in the new room by then so I can start to decorate it.  The rooms are very bland! The one bright point in the room right now is a beautiful quilt that one of the moms from our Boy Scout troop made for Krista on behalf of Troop 1.  Thanks so much Mary!

Trevor stayed home from school today due to a sore throat and a stuffy nose.  He's doing better now, with just a residual stuffy nose.  He thinks he'll be able to go to school tomorrow.

I love you, Lord, my strength.
The Lord is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield and the horn of my salvation, my stronghold.
(Psalm 18:1-2)

Day 2: Feeling Better

Today was a better day for Krista. Her migraine went away and they managed to get the grogginess under control better. She was feeling good enough today that I actually did go home. I wouldn't do this normally, but the care she's getting has been excellent and that makes it easier to trust her into their hands.

Krista tells me that it has been a very nice experience being at the City of Hope. The staff seem to really care, and treat her like a person rather than a number. Today, without any prompting, they sent first a physical therapist and then an occupational therapist to determine her physical capabilities and provide exercises she can do while getting treatment. She has seen physical therapists previously that weren't that helpful, but this one was excellent -- asking the right questions and offering the right kind of help. She also got to meet with the pain management specialist who has been helpful in identifying ways of helping her with the unusual pains she has been experiencing. The theory is that her body has saturated the pain threshold so that it doesn't take much to set her into strange whole-body pains. The pain management specialist has her taking a medicine that should bring that threshold down. So far it seems to be helping, though they're still trying to get the dosing right.

It's good to see the family again. The boys are doing good, and Glenn and Jannelle are doing great taking care of them. Thanks to Alyssa for dinner tonight. Pray for Trevor who just came down with a small sore throat. We were hoping to take the boys to visit Krista this weekend, but if he gets sick that won't be possible. Plus, if I get sick, I won't be able to go back to stay with Krista when she needs me. Also, please pray for my father who will be getting his abdominal aortic aneurysm repaired Tuesday. It's not supposed to be too risky, but it is in a dangerous area. My mother was going to visit us next week, but will need to take care of Dad for a bit. Glenn and Jannelle have agreed to stay longer, so we've got the kids covered. It's just a change of plan and we trust that God is working even in the things we didn't count on.

Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails. (Proverbs 19:21)

Day 1: Go Home?

Krista checked in to the City Of Hope late yesterday.  Monday is a busy day here, so there was a lot of waiting for appointments, followed by waiting for a room to open.  There were no rooms in the allogenic transplant (6th) floor of the new building, and there was a chance that we might have had to stay in the old building.  The Lord answered our prayer and made it possible to be in the new building in a floor very like the allogenic translant floor -- it's on the autologous transplant (5th) floor!  Why do they have separate floors for the two types?  I don't know, but there must be enough of each to demand it.  They do a lot of stem cell transplants here.  They will move her upstairs sometime before the transplant, but we don't know exactly when that will be.

The day was emotional for Krista, as she was actually feeling good and didn't want to give up her freedom.  Who wants to start a painful treatment when you're feeling good.  Plus, she didn't like that I was joining her in her medical prison so she told me that she was doing fine and I should go home.  If all went well the next day, I agreed that I would.

But I'm still here!  After a late evening dose of chemo, Krista didn't sleep well.  When I got up to do a early morning phone meeting for work, she looked like she was doing OK with the lack of sleep, but a couple of hours later when I got back she was in severe migraine pain.  It stuck with her all day, even though they gave her some strong pain meds, causing lots of grogginess.  There's another chemo dose happening right now, so we'll see how she does with it tonight.  Maybe tomorrow will be different.

The boys are at home with their grandparents, Glenn and Jannelle.  It was really nice that they could come out from Colorado for a while to stay with them.  They've had a lot of help also with getting the kids to and from school (thanks Nancy, Nora, and Bonnie!) and meals (thanks Melanie and Julie).  It's been a while since I wrote last, so I also need to thank Jessika, Marta, Willow, Jill, Betsy, Alyssa, Jill, Elaine, Mia, Jacqueline, April, Marsi, and Susan for the meals you brought.  All of you are so awesome and we're so grateful for the help!

I think we're all in need of some good rest, and I can't think of any better way to get it than to seek it in Christ.  Lord, take this hardship and turn it for Your Glory.

[Jesus speaking] “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” (Matthew 11:28-30)

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)

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 bethematch.org.   (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)