Joy and rest... and more

I hope everyone read Will's post on Facebook from when we were still in Kyiv. We are so thankful and so happy. All week I've felt like the good news is slowly sinking in: 50% less cancer in my body! Praise God! Most of this week I've been resting and and rejoicing and recovering from the trip. Will, too. His seasonal allergies are really bad, so he's also having to rest some. Our kids might be resting? But in a different way. They've been squeezing out every last drop of summer in running around with their friends, riding bikes all over (Jaan and his friends), visiting back and forth (Raia and Asya and friends), and sleepovers.

This morning I read a short chapter about joy and rest in Champagne for the Soul. I have been amazed by all the joy all through all of this journey from the very beginning, and the idea that joy and rest go together really resonated with me. "The Lord takes delight in his people; he crowns the humble with salvation. Let the saints rejoice in this honor and sing for joy on their beds" (Psalm 149:4-5).

So, what's next? Like I said before, my doctor was out of town. The doctor we saw is the head of the chemo department (not the oncologist they had scheduled us with). I know her, and I think she's a little more cautious and optimistic than my doctor. This one said two more Keytrudas, then another scan. (Ugh. I've already had three this year.) I think my doctor might want to do a few more before checking again. We'll see. But we're continuing on, as we have been. I have tickets for my next trip Sept. 16. Please keep praying!

More immediately, we need to start into the school year. The First of September is the traditional opening day for school, but since it's a Sunday this year, we'll just celebrate that day, then get to work on Monday and Tuesday. Bogdan has his "entrance exam" for music school on Tuesday, so please pray for him. Please also pray that we can easily get his medical paper for starting.

Toddler conversation

Our littlest neighbor is really taking off linguistically, and I love talking to her.

A few days ago, Asya spent the night with a friend, so she wasn't home in the morning. I was outside with all the younger kids, and Raia joined us. She greeted the little one. Little One crossed her arms, pouted, and said, "Nyet!" (She likes the rest of us, but Asya is her favorite.) I told her that Asya isn't home, and she replied, "IS!" She just wouldn't believe that we weren't hiding Asya somewhere. And she spent the rest of the morning repeating in their language that Asya IS at home.

General update

Happy Ukrainian Independence Day!

Jaan and Raia had a great time at the beach, but their stomachs were pretty upset for a few days afterwards. I don't know if that was something they brought back from the sea or if they took it there with them. The little kids in this house were also kind of sick while the older ones were gone. Jaan was able just to lie around at home when he came back, but Raia was off at that amazing South Point Youth Festival. Every time she would call me to tell me that she wasn't feeling good, I would try to talk her into coming home, but she didn't want to. So, she had a wonderful time, but came home looking like she had lost weight and hadn't slept for a week. Then she did sleep most of that day on our couch with tons of noise going on all around her, and that was enough for her to recover fully.

The festival organizers are posting lots of photos, but I only found Raia in a few of them, and I'm posting those here:

Today Jaan is helping with a wedding at church, Raia is getting ready to go out to holiday festivities with people from the youth festival, and Asya and Bogdan are playing all day with friends; there are at least four visiting children running around, beyond the 4+3 who live in our house.

As for me, I hope you've read Jeanne's ninth update. We need lots of prayer, especially over the next few days. 

We went this morning to do blood tests, to get that out of the way in advance. They needed a whole lot of blood, and I passed out, so I've been feeling pretty yucky since then. (I think the clinic in Kyiv combines some tests that they did separately here.) At least they were very nice, though, and I'll be okay, of course. We got really good coffee at a coffee shop afterwards, too.

Tomorrow Will and I will head to Kyiv, and Monday morning we'll have to hurry from the train to the clinic to get there in time for my scan. That's why we decided to do the blood work in advance: one less thing to fit in on Monday. I would like to get everything done in one day at the clinic. Ideally, we'll have the scan, wait for results, have the consultation with this oncologist that I haven't even met yet (my own doctor is a chemotherapist, and she's out of town), hear good news from him (I hope!), eat a nice lunch at the restaurant there, get Keytruda #5 (if the news was good), and be done. It is possible that some of that will have to be put off until Tuesday, though. Please pray for us every step of the way.

(From last time in Kyiv)

Oh, I've also been trying really hard to get everything ready for school, so that I can just be tired next week, if I need to. Will got Bogdan tentatively registered for bandura at music school (hurrah!), and we have everything set for art school. I just have a little more left to do at home, and then I think we'll be as ready as we can be.

A fun week

We had several busy days this week. Tuesday was Bairam. Then I rested on Wednesday. And Thursday was the yearly picnic. This is a highlight of the whole year for many of the kids we work with at the orphanage. This year was different, because the whole meal was in the restaurant where we have had dessert the past few years. Our kids went early to meet the bus from the orphanage and help with everything, while Will and I just went for lunch and the end of the festivities. Because of that, I only have a few photos. When Will and I arrived everyone had already played games, done crafts, listened to a story, and walked around the park. Raia and Asya led them in some songs, and then we went into the restaurant.

On Friday our kids joined our English group for a work day at Stephen's House. They worked hard and had a great time. The house is almost done; the grand opening will be September 6!

While they were on their way home from that the youth pastor called Jaan, said they were at the sea for a few days, and would he like to join them? So, Jaan walked in the door asking if he could go to the beach. I suggested he rest some and wait until the morning, but he checked the bus schedule and found that there was still one last bus that evening. He took off to buy himself a bathing suit, get a bus ticket, and go. I have heard rumours that he slept through where he was supposed to get off, and the whole youth group walked to the next bus stop to meet him late, late last night.

After Jaan left, one of Raia's friends called her, also from the sea. She said that another friend was getting baptised, so Raia had to get to the beach, too! It was too late last night, but Will took her down to get on a bus early this morning. He said that he's used to being flexible, but this was all almost too much. They'll come back tomorrow, and she'll go straight to a 3-day youth festival that she's really excited about. (That's why she had stayed home from the sea trip in the first place, I think. She apparently knew about it, but didn't even mention it to us, until she heard that Liza's baptism would be there.)

Kurban Bairam

Yesterday we joined our friends at their Kurban Bairam celebration. (For those who don't know, we share a house with a Crimean Tatar family.) It's called something else in the rest of the world, I think, but that's what it is here: the holiday to remember Abraham's willingness to sacrifice his son. It lasts for several days. First our neighbours had lots of guests, then their father spent a day out making sacrifices, then yesterday there was a big celebration at the park. Asya wore her very best dress, as is proper for that day.

When we got there, we saw two boys we know from church. They do martial arts and were asked to help with that part of the event, but they weren't too sure about it all. I think they were relieved to see that we were there, too.

There were trampolines for the children to jump on, bikes to ride, games to play, cotton candy....

I was trying to get a photo of all three. B had to tell 
me something urgent, L couldn't stop jumping, 
and N flopped over in the background. But they're all there.

The one in the darker dress is our girls' friend.

At some point, Bogdan knocked out a loose tooth, and Will took him off to get cleaned up and find him some ice cream, since his mouth was bleeding a lot. We had been sitting on the edge watching everything. A drunk man walking by flopped on the bench where I was and almost fell on me. Our neighbour and her friends saw, and didn't like that, so they pulled me back into the women's side and started feeding me.  I stayed with them for the rest of the time and thoroughly enjoyed it all.

Then, this was the funny part: about the time we were leaving they announced the winner of the wrestling. It was one of the boys from our church. They called him up to the front and told him to wait while they get the ram. They brought a ram out from somewhere, put it on his shoulder, and had him walk around with it, alive and kicking! The ram was his prize. He was as surprised as we were. Then he started asking, "Now what? Do I call a taxi?" He and Jaan had come across town on their bikes. We left at about that point, but I was imagining him and Jaan trying to carry it between them, or one of them riding two bikes, or something. Jaan says that the organizers of the event ended up keeping it for him, and telling him that he could come get the meat from it later.

Just a sweet photo from this morning to finish up with:

She loves her "AsYA."

Quote

A friend sent me the book None Like Him, and I wanted to share this long quote from it:

     I was twenty-seven when I learned that my days were numbered. My insight came in the form of an unexpected phone call. Holding my six-month-old son, two months pregnant with my daughter, I listened uncomprehendingly as the doctor explained I had malignant melanoma, the deadliest form of skin cancer. They cut a section of skin, deep and wide, from the wall of my swelling abdomen.
     Once you hear a cancer diagnosis, you can't unhear it. Even with successful treatment, it changes the way you number your days. I had been given an opportunity not many twenty-seven-year-olds could claim: the opportunity to count each of my days as precious. Any illusions I might have had that this life would last forever were effectively removed. I learned a perspective that many don't grasp until the aging process begins its faithful instruction in universal human frailty. I didn't have to wait for crow's feet or hip replacement. My eternal Father taught me young to pursue the sacred calling to "live this day well."
     The experience marked me. Perhaps you can relate. Unlike my sister-in-law and the thousands of others of my generation who ink their credos into their flesh, I won't get a tattoo—not because I disapprove of them, but because I'm already sufficiently marked. I have a satin-slick scar which, if you were to see it, traces no apparent pattern. But to my eyes, more legible than any tattoo, it forms the words, "Tomorrow, if the Lord wills."
     We live differently when we regard the future as a place we will go "if the Lord wills." God does not owe me the seventy or eighty years of which Moses speaks in Psalm 90. Every year he gives is a gift, gracious and undeserved. Thanks be to God, not just for the years he has preserved me but for the years he has ordained for me, perfect in number and known only to him....
     Here is a remarkable truth: God is able to bring eternal results from our time-bound efforts. This is what Jesus intimates when he tells us to store up treasure in heaven rather than on earth. When we invest our time in what has eternal significance, we store up treasure in heaven. This side of heaven, the only investments with eternal significance are people. "Living this day well" means prioritizing relationships over material gain. We cannot take our stuff with us when we die, but, Lord willing, we may feed the hungry and clothe the needy in such a way that an eternal result is rendered. We may speak words that, by the favor of the Lord, transform into the very words of life. This is the calling of the missionary, the magnate, and the mother of small children: spend your time to impact people for eternity.
     Long after the beloved generations that debate tattoos around my table have gone to dust, long after your generation fades like grass, the God of all generations will endure. Thanks be to the God for whom "a thousand years are but as yesterday," the God who is from everlasting to everlasting. Thanks be to God for the limit of time, by which we are bound and he is not. Eternal God, establish the work of our hands.

From None Like Him, by Jen Wilkin. I don't know the page number, because I'm reading on Kindle.  

Photos from yesterday

Our kids had a wonderful time yesterday! The plan had been to go to a park on the other side of town, walk around the island there, visit the petting zoo, and go swimming. But after walking and visiting the animals, our friends saw the boat that goes across to their grandparents' dacha, so they changed their minds, and took everyone over there to swim and eat and spend more time together.

When they got home, Bogdan instantly started drawing all the animals, while everyone was trying to tell us every detail of the whole adventure.

Upcoming Keytruda #4, travel notes, and today

We switched my next Kyiv appointment to a Tuesday instead of a Monday. Also, I'm going to make this trip by myself and in the fastest way possible: two overnight trains in a row. Please pray for me, because that can be exhausting. Last time--with day trains and two overnights in Kyiv--seemed really long. I'm trying to figure out the best way to do this and how to work with the train tickets that are available. 

I've already made arrangements for the trip after this, too (August 26). On that one, Will is going with me, and we'll spend one night at a hostel in Kyiv. (I think one overnight is probably the best way. But before or after treatment? Like I said, I'm trying to figure out the best way.) I bought these tickets online! Normal people do that all the time, but the system didn't like our cards for many years, so I was really excited when I tried this time, and it worked.

Anyway, this time I'll leave home Monday evening, and get to Kyiv Tuesday morning to go straight out to the clinic. I'll spend the day there, then go back to the train station and get on a train to be home Wednesday morning. Then I'll SLEEP. That's what I told friends from church: sure, I'd love to have them visit this week, but not next, because I'll be asleep. (Keytruda can cause fatigue, and the other medicine they add for me causes extreme sleepiness, plus regular travel tiredness....)

And today: I'm going back to the orphanage for the first time since before I went into the hospital! I am so excited.When I called the director to plan this, she started crying when she first heard my voice. Maybe we're all excited. There's a guest here, and I'll be accompanying him and some other friends on a visit.

I still want to write more about camps and share more photos. That was such a big deal and so wonderful for everyone involved. I might have to interview our children, or something, though, because I wasn't there.

Second camp and third Keytruda

The second Agape day camp started yesterday in the children's shelter in a village right outside Kherson. We know from before that working with these kids is really hard emotionally. Many of them are right in the middle of really heartbreaking situations, and their emotional wounds are often very obvious. Please pray for health and strength for the team and for another great camp with these kids.

Also, I have to be really vague, but now there's something going on with a friend of Jaan's, a struggling family, this shelter, and our church. Please pray for everyone involved, especially for wisdom and compassion for the church leaders.

Again, there are photos available on Facebook. Here are a few to start with.


And then there was our Kyiv trip:

Raia and I got back late Tuesday night, and she jumped right into the beginning of camp Wednesday morning. I stayed in bed. Our trip did go really well. We went first class on the way there (above) and "sitting" (last class?) on the way back, daytime both ways, which was beautiful, but also made the trip seem really long. It also meant that we enjoyed two nights at a very international, fun hostel. Raia took photos of lots of the signs there. Here are just two:

Our time at the clinic went really well, too. My blood work was fine all around. I told Raia that after anaemia one time and liver trouble the next, I was almost expecting something else to pop up. But, no, it was all good. My doctor confirmed something that I was thinking: the tumours we can feel seem a little smaller to her too. We won't get a conclusive answer until they do scans, but it does seem like the Keytruda may be working. I did get the super sleepy anti-allergy medicine again, so I have had both general fatigue and intense sleepiness to deal with, but they're already going away, and I certainly can't complain!

Next time should be August 5, but I was just looking at the tickets Will had gotten for me, and they're for the 6th. I don't know if it will be better to change the tickets or my appointment. Either way, that should be another routine treatment. They clarified something I hadn't been sure of: does diagnostics "after the fourth time" mean on the fourth or fifth trip? It means the fifth. So, next time won't be anything different, and the time after that--August 26--will be the moment of truth.

Raia's one request was to find a bookstore, so after the clinic I slept for an hour, and then we went out. We had checked online to be sure that it would have a place for me to sit, so I just had to walk there, sit while she looked, and then walk back. Still, that felt like a lot to do on clinic day. But we were both very happy.

More about camp and travel plans

This camp flew by, at least to me, sitting here at home. There have been quite a few photos and videos on Facebook, many of them available without any restrictions, and more if you're friends with our friends on the camp team. Here are some from day 1, day 2, day 3.... Look around for more. And these are the very few pictures that Will took with our camera on the first day:

Tomorrow is the last day at Tsyurupinsk. The camp team will go to church, like on a regular Sunday, and then to the orphanage do a closing picnic for the kids.

Also tomorrow, Raia and I will be traveling to Kyiv. I had planned to go by myself this time and have my friend there accompany me to the clinic. However, that friend is in Moldava, and Raia really wanted to go, so that's what we're doing. We'll travel all day Sunday, spend the night in a hostel, Monday at the clinic, another night at the hostel, and then travel home on Tuesday.

I am still really enjoying feeling well and not being in pain. We don't really know what is going on inside of me, though. Please keep praying that my hemoglobin will be up, liver toxicity down, and that the Keytruda will work.

Next week this same wonderful team will do camp at the children's shelter in Stepanovka. Oh, one of them sent me a fun video from Tsyurupinsk camp this morning:

Really, my favourite was from the talent show yesterday. You can only see it if you're friends with me on Facebook, though: Uncle Joe and Bogdan performing with live accompaniment.

Tsyurupinsk camp

Day camp in the orphanage starts today! Back when we first started planning, I was going to be the camp director. Now I'm staying home, but most of the rest of my family is involved. There's going to be a play that goes on from day to day, and our three oldest have been practicing for that; Jaan, our actor, has the lead role. Bogdan has to stay home with me, at least for now, because he got a bad cough at the river. Other than sounding bad, he feels fine, and he's very disappointed not to be going to help at camp, though.

I actually feel so well right now that it probably would be possible for me to go, but I need to conserve energy and stay healthy. Camp in Tsyurupinsk and Stepanovka goes July 10-20, and my next treatment is July 15, right in the middle of that. I need to get ready to travel, and I'll probably be tired when I get back. Also, we couldn't even imagine that I would be feeling so good, so we didn't plan for me to be at camp.

Since I don't have any camp photos yet, here is one from Monday. Most of the guys we see at this institution grew up in Tsyurupinsk and would do just about anything to get back to their "home" there. Any time we can visit them, they love it. They wanted to take a selfie with me:

P.S. I had to come back and add that the first camp photos are already appearing!

Feeling good

Last Sunday I went to church for the first time since April. It felt so good to be back and see everyone! And I have felt well and without pain all week. On Thursday we all went to our friends' house for the Fourth of July; Bogdan and I even walked there. Again, I hadn't done anything like that for quite a while.

Then we spent the weekend at the river, to celebrate Will's birthday a little early and to get some family time in before local Agape camps start. It was wonderful! After being at home and not feeling great for what seems like such a long time, this is all almost unbelievable to me. I am so thankful!

On the way over in the boat

Our early birthday present for Will was that the kids shopped for and prepared a delicious dinner the first evening there.

Last time we took a photo like this, too.

Asya hardly came out of the water the whole time.

On the way back, we missed the slow boat, so they called two speedboats to zip us back across the river:

Tomorrow Jaan and Raia have a camp planning meeting, and I'm going on a day trip to visit some of the former Tsyurupinsk orphanage kids at the institutions where they live now.

Jaan at camp

There is a photo of him today, and it makes me laugh.

Kyiv and art camp

Our Kyiv trip went well. Travel was easy (for me. Will was hot all the time and didn't sleep, but he was okay.) Inpatient and outpatient infusions are a little different, but not hard to figure out. We were at the clinic for about four hours. They do a physical and blood work first, wait for the results, then the infusion. I didn't know it beforehand, but they also put allergy medicine into my IV this time, and that hit me like a tranquilliser dart. I thought it was plain fluid to get started like last time, and I couldn't understand why I fell asleep pretty much at the first drop. I woke up when they came to switch to Keytruda and went back to sleep. Then I slept in the taxi to our friends' home afterwards--but I could tell that shouldn't have been a very sleepy ride--and I took a nice nap in bed once we got there. That wore off soon, though, and there weren't any problems.

My anaemia has gone down from "2nd level," to 1st, so I don't have to take the gross liquid three times a day anymore. I also don't have to go for blood tests halfway this time. I do now have 1st level liver toxicity, though. The doctor added pills to help with that, and we need to pray those liver numbers go down before next time. My pain levels have also been lower the past few days, which has been wonderful, but it can fluctuate wildly, so keep praying. Please remember, we won't know if this Keytruda is working until after the fourth time.

Thank you so much to everyone who is praying for us and actually making it possible for me to get this treatment!


While we were away, our kids have been having a wonderful time. The art school has been sending a constant stream of photos and even videos. That was especially nice when we were so far away! Here are just a few highlights:

(Uh-huh. And the one with the face here is his great friend.)

Unfortunately Jaan doesn't get into the photos much. Running the sound board isn't very photographical. This year there are a few children with autism at camp, and he has been helping in their groups, too, though, so maybe we'll see more of him soon.