The first few Poland pictures

I'm back from my PET CT scan, Will has started on our residency paperwork (it's much more relaxed with 90 days now, instead of the 45 we had years ago), and today is the last day of quarantine, unless they extend it again. So, I'll start to tell about our trip to Poland:

We flew to Kraków on a Tuesday. Some friends of ours happened to be on the plane with us, and their little girl was thrilled to see our girls. She entertained everyone on the plane with her joy in her first flight, too. When we arrived, we said goodbye to those friends, and our Kraków friend met us and drove us to the apartment we had rented for the week. He had a whole bag of food for our dinner and breakfast. We ate and went to bed. That night, between some very loud neighbours and not-so-good sleeping arrangements, we didn't sleep much, but we survived.

Bogdan drew this view.

The next morning Will and I went to Starbucks (!), then the Ukrainian consulate to apply for our visas. Our kids stayed by themselves at the apartment. (They don't need visas.) The consulate was packed with people. They accepted our documents, but weren't sure about our insurance. It's the insurance we buy every year for residency; still, the man behind the desk said that he would need to ask about it. We went out to pay at their bank, then back to the consulate to show that we had paid. All that took a while. Then we were supposed to come back again at 2:30. So, we walked to the apartment, ate lunch, and rested a little. When it was time to return to the consulate, we all went. We planned to pick up our visas, then walk on to our friends' house. The consulate decided that our insurance wasn't enough. It's good for living in Ukraine, but not for entering Ukraine and for the 90 days after entrance that the visas would be good for. So, Will went off to buy more insurance. The man warned him that it might be hard, because most places don't want to sell to non-residents, but he gave him several options to try and told him that he would wait for him to come back, even though the consulate was closed to visitors. The rest of us walked on, saw ducks in a creek, and enjoyed time with our friends. When Will was done, Jon picked him up, and we all had dinner together. 

Drawing, first thing in the morning

To record the fact that she was practicing

First picture of the ducks in the creek

That night we arranged everything better for sleep, and our new neighbours were quiet, so we were much happier. There aren't many photos from that first day, but get ready for lots from the rest of our time in Poland....

PET scan plans

Tomorrow night I'll travel to Kyiv for my PET scan, which will be on Wednesday at a new-to-me place out beyond the edge of the city. PET scans use radioactive sugar to show how active tumours are. The CT scans I've had before this just show size and shape. It sounds like this will be quite a procedure. Will called to see if they could take me earlier in the day, so that I don't have to fast as long, and they said, no, melanoma patients always go last, because their scans take the longest. I can eat breakfast though.

We had planned that I would stay overnight afterwards in Kyiv and see my own doctor the next day to go over the results, but again... melanoma. They say the results take longer than with other cancers, so we cancelled with my doctor. I'll just come home that night, and when we get the results (around 3 working days), we'll email them on to my doctor.

Please pray for my travels, the actual scan, and for good results, of course! It is possible that this scan could show that what is left is not active cancer, and then I could be done with treatment.

Home from Poland

We are home from what turned out to be a really wonderful trip. As I sort through photos, I hope to post a bunch more. Thank you to everyone who was praying!

We have been getting questions about the visa and residency process here, so I'll try to explain a little. Americans can visit Ukraine for up to 90 days without visas. However, if we want to live here, we have to have residency. That means getting a short term entry visa outside Ukraine and then applying for residency back in the country. Then, with temporary residency like we have had, we renew every year in Ukraine... if we get all the right documents in on time and they don't change their holiday work schedule, like they did this year. We've renewed for seven or eight years before this without any problem.

So, now that we're back, we will get all our documents together again and go apply for residency. Getting visas was just the first step.

Also, we came back to this:

School quarantine! Flu and cold season reached the official threshold to close schools. Music school is closed for all group lessons. Individual lessons are still available, if the student is healthy and the parents aren't afraid. Our art school is private, and they're choosing to stay open. It will actually be nice to have a little bit of a chance to catch up on our homeschooling, as our kids stay home from group classes and rehearsals. Although we'll still send everyone to individual lessons.

Update before Poland

I've been so, so tired since my most recent treatment, and we've been busy with all our usual life, plus preparations for travel. All is well, though. The documents we need on this end are ready. Will did get our visa applications switched to Krakow, so we'll fly there on Tuesday and turn in our documents on Wednesday. Then we should have our visas and free time to enjoy Krakow, until our flight home on the 4th.

These cheap plane tickets we have don't include baggage or even full sized cabin luggage, so our girls are having fits about how they're going to pack. Asya's flute teacher is also trying to figure out how Asya can practice in Poland. Today she sent home a lighter flute case, hoping that Asya can somehow take her instrument with her in that.

I am also set up for a PET scan on February 12. When Will called the place my doctor recommended in Kyiv, they didn't have anything until May 22! And we couldn't connect with anyone in Poland, even with Polish people helping and trying to make calls for us. But, there's another place outside Kyiv, and they'll take me. So that and all those travel arrangements are set for after we get back from Poland.

School with Cinnamon again

Keytruda #11 (and no Warsaw?)

The travel itself wasn't fun, but otherwise I had a really good trip this time around. That's just what I needed after the difficulties last time. My friend Anne gave me her whole day. The time at the clinic went smoothly and quickly, and then we had lunch and went back to Anne's to rest. In the evening her small group from church came over, and I got to meet them (and all their babies!) before my train home.

Anne took this photo.

My blood work was good, and there weren't any problems. My doctor said that I have had such good results with Keytruda, that it might be time to start talking about finishing treatment. So, she wants me to get a PET scan, instead of scheduling another Keytruda. It is possible that what CT scans show as remaining tumours might just be dead tissue, and a PET scan should tell us if that is the case or not. There are only a few places that do them in Ukraine, so it can be hard to get an appointment. When she heard that we're going to Poland soon, she jumped on that and suggested that we do it there. My friend in Poland already did some research for me, and Will's going to call to the other option in Kyiv today. Then we can decide when and where and how.

Also, there are visa appointments at the Kraków embassy now, so Will is going to try to pull our applications out of the Warsaw queue and get us in for Kraków.

I seem to be even more tired than usual this time around, but otherwise I feel fine. I'm enjoying naps and early bedtimes. As always, it's just really good to be home.

2nd Christmas, back to school, and Warsaw

We had a really nice "2nd Christmas." Will and the kids went to church, while I watched online. They brought home gift bags for our neighbours. Raia went to a Christmas play at another church with her friends, but the rest of us had a nice Christmas dinner at home. In the evening, after Raia rejoined us, we went around to our closest neighbours to carol. Some of them had been waiting and asking long in advance. This year Asya played her flute for them, too. When we got back to our own house, we took treats over to our neighbour here. The mother and children are in Crimea for the holidays, and we miss them terribly. Their father got them on Skype for us, though, and there was a joyous virtual reunion. (They should be home soon. Hurrah!)

The next day we started back to school. That's going well. Only Bogdan got a cold, so he hasn't been able to go back to music school, but it's not slowing him down otherwise. His teacher was cancelling lessons yesterday, too, because she was sick. I'm hoping all will be healthy to start again soon.

And... Warsaw. We already made our travel plans for Krakow, and that's the only flight anyway. However, when we tried to turn in our visa applications online, we found out that there are no appointments at the Krakow embassy this month or next month. We had to do something, so we applied to Warsaw. Now we'll fly to Krakow as planned, spend the night, and then Will and I will take a train on to Warsaw early the next morning, while our kids spend the day with our friends. When I told Bogdan that they would be staying with our friends for a day without us, he wanted to know if these friends speak Russian. (He calls them "the friends that I don't know," because he was too little to remember anything from the last time we were together.) I told him that no, they don't speak Russian... or Ukrainian. They speak English and Polish. He was upset. I reassured him. Then he gave a big sigh and said, "Well, that's better than Chinese."

We will go back to Krakow that same day, and we're really hoping that we'll have our visas with us. Somehow. But Warsaw apparently takes 10 days to process, although that can be expedited to 5. Could they be ready on that Monday? Maybe Will can go back again alone to get them, just before our flight home Tuesday? Or something. We need lots of prayer, for that part and that our documents here will be ready in time; the offices here can be notoriously slow.

Poland

In trying to remember the last time we went to Poland, I went back through old blog posts. I remembered that Bogdan had his first birthday while we were on our way home, so it was 2012. Everyone was so little!

And the time before that, 2010, Asya was the baby in the stroller. I'm thankful that we can fly this time, and that everyone is so grown up and independent now. They don't really remember much of anything, so it's going to be fun to discover it all over again. We're rereading The Trumpeter of Krakow, and I found some other books for us, too....

Christmas program and travel plans

Today the art school and the children's ministry team that Jaan and Raia serve with put on a Christmas program. Asya and Bogdan attended the first run through, and it turned out that Asya was in Jaan's group, and Bogdan was in Raia's. The teens guided their groups through crafts, cookie decorating, the Christmas story, and other activities. Then they did a second run with different kids. Here are a few pictures that they shared with the parents' group:

And travel plans: there are brand new weekly flights on a budget airline straight from Kherson to Krakow. So, on January 28 we are going to fly to Krakow to apply for new visas. We're all starting to get excited about seeing our friends there and doing some sightseeing. We want it to be a really fun and educational trip. Please pray for us (and Olga, who does paperwork) as we get all the papers ready, and then as we travel. Pray especially that I'll be strong enough to handle the travel and enjoy it all.

Happy New Year!

Merry Christmas, Happy New Year, and Merry Christmas again from all of us to all of you!

Thank you for all your love and support through what has been a very hard year (but not a bad one). I hope the year ahead will be a little more gentle to us, but no matter what, God is good.

I love our art school!

Saturday, when I was in Kyiv, Will had to be at Migration, Jaan and Raia were busy with youth events, Asya had her last art classes before the break. What to do with Bogdan? She took him with her. And, instead of just making him sit and wait for her, apparently they pulled him right in and let him be a 6th grader for the day.

Then, yesterday, when four of us were sick or plain exhausted, weather was icky, our neighbors were leaving for Crimea, and Asya and Bogdan were going stir crazy, I remembered that art school was doing some extra master classes. One was starting in about an hour. I called and registered Asya. Again, Bogdan was officially too young, but they said that of course he could come, too. After one class, Asya called me and asked if they could stay for another. I had only sent money for one, but they got permission to pay later. So, they were two very happy children!

Keytruda #10 and document troubles

I'm home after another trip to Kyiv. My blood tests looked good (except for anemia), and at the end of the day I got the Keytruda. I had a really rough morning, though. At first my blood pressure dropped, and I passed out and felt awful. They gave me an electrolyte IV, before we could even get down to business. But it worked out, and I was thankful again that everyone is so nice there! The doctor added a medicine for diarrhea to my routine, so hopefully my stomach will be happier this time around. Tentatively, I can say that it already seems somewhat better. I ate like a queen while I was in Kyiv; I tried a fancy Chinese restaurant on Friday, and Saturday I had a holiday special turkey dinner at our favourite cheap restaurant chain.

While I was in Kyiv, Will found out really bad news here. Our residency comes up for renewal January 21. We were on top of things and started the process early, so that everything would be ready to go in on January 2 when they reopen after New Year. But their schedule changed, and because of that, Friday was the last day we could submit documents. It was already too late in the day then, and I wasn't present. So, after a sleepless night for the wonderful lady who does our invitations and lots of appeals the next day, the final decision is that we have to leave Ukraine, apply for new visas and start the residency process over again. This is the very short, unemotional version of it all. It's not short and unemotional in real life, though.

Also, I have a cold, and Will's not feeling great.

Please pray for us!

Almost (1st) Christmas

Well, I haven't been asleep all the time for the past few weeks, but I certainly haven't gotten around to writing. I said I would write about the fun our kids had when we were in Kyiv, so I'll try to jump back to then. When we walked out the door, Jaan and a friend were in the kitchen making brownies, not without adventures. They had a party for their church theatre group the next evening, so they were preparing for that. Apparently the brownies turned out wonderfully, despite the adventures: yummy and even decorated with an inside joke for the theatre. I got photo updates and gave advice long-distance off and on throughout the process.

Asya had plans to spend the night with a friend, then go to a music contest first thing the next morning. She was very happy about all that.

Friday evening Bogdan also had an extra ensemble rehearsal at music school. Before I heard about the party, I had planned that Jaan would take him to that, sit and wait for him, then bring him home. Asya was going to be gone, Raia had an art class, so the boys would have a quiet evening together. Hah. But they had fun. Jaan dropped Bogdan off at music school early and arranged that a friend who lives at church would bring him over afterwards. Bogdan was so excited to get to be with Jaan! At the theatre party!

(I took this from someone's FB page.)

After art Raia went home with friends who live right by the church, to wait until Jaan's party was over. As we were getting on the train in Kyiv to come home, we got a frantic call from our wonderful neighbours. They had tried to check on our children before bed, but nobody was home. When I called the kids right after that, I told them to be sure to make noise when they got home, so that Aunt N would see them and know they were okay. It was reassuring to me to get that call, even though I was sorry to have scared them.

Diagnostics and Keytruda #9

Thank you so much to everyone who was praying for us! Two night trains in a row makes for a hard trip, but still everything went smoothly. Yesterday morning our train got in to Kyiv late, but I was still on time for my scan. I don't like those scans because of how much the contrast hurts, but this time I didn't even feel it. After the blood tests and scans, we had breakfast in the nice restaurant at the clinic, then set out for a walk. They called us back almost right away, though, to let us know that our results were already in and my doctor was ready to see me.

I posted the basic idea on Facebook already, so there wouldn't be any suspense, but the details are that the biggest tumour was 47x38 mm in August and is now 38x25 mm; next biggest is not visible (but I can still feel something there, so we're a little puzzled); last one was 24x18, is 13x9; lung spot was 7 mm, is 5 mm; all affected lymph nodes are slightly smaller than they were. And my blood tests were decent, so we could do another Keytruda treatment, after I rested and drank water for a few hours.

Honestly, I was surprised that everything pulled together like that. Last week was really hard, and I thought it meant the end of Keytruda, or at least a break. But, we got a really helpful, really optimistic gastroenterologist in Kherson on our side, and all her supplements and medicines are making a difference. (So I can forgive her for an awful procedure she had me go through to get diagnoses!) Which means we keep going.

My next appointment in Kyiv is set for December 27.

After the clinic yesterday, we still had some time before our train, so we explored a little and enjoyed a nice dinner.

And then we came home. Oh, almost every time I've travelled back and forth, there has been someone I know, or at least am acquainted with, on the train with me. This time we were waiting to board, scanning the crowd, and joking about who it would be this time. It turned out to be the bookkeeper for the Christian institute and our church. Not only were we on the same train, we were in the same wagon. Usually we only see her once a year--for about a week--while she works on our residency renewal. Her daughter was recently diagnosed with cancer. We've been praying for each other from a distance, but it was nice to talk a little now.

I am so, so thankful: for good results, for good treatment, for friends and people we don't even know who are making this possible, for my home and family, and for so much more.

Our kids did well and had lots of fun while we were gone, so I'll try to write about some of that in the next few days. If I can get my eyes open.

Beautiful autumn...

...is already gone. But I enjoyed every minute of it while it was here! The beautiful part seemed to be longer and warmer than ever this year.

(My anxiety is gone, too. Joy and peace are back. Maybe it was more seasonal blues than anything related to cancer? The sun is actually out today.)

These photos are all from back when everything was at its peak of beauty. First, walking Bogdan to and from music school, then other times in our yard:

Our house

I enjoyed lots of reading in the leaves.

Everyday life

So, now it seems like the first week after Keytruda my stomach is upset, and then it settles down. When I said "trying to eat even better" in my last update, I didn't mention that it's kind of hard to eat better than I do, because I already eat like a walking health food store. But, I'm trying, and my stomach is handling it better again already.

Jaan has a cold. Pray that he won't pass it on. He had to call in sick instead of making coffee at church today.

We're busy with music school. Asya played at a festival last week. She had an exam today, and I haven't seen her yet to know how that went. Bogdan has his first ever performance tomorrow; as far as he has caught on, it's a concert, but really it's a contest. Raia will be competing, too. Sunday Asya will be in a big televised orchestra concert.

Jaan and Raia are going to a youth conference Friday-Saturday.

After the conference we'll meet them at our friends' house for Thanksgiving.

I have had some times of anxiety about my next scan in Kyiv. Please pray for me. Overall, my whole experience from diagnosis on has been joy, so feeling worried has been an unpleasant surprise. If the first four treatments made everything 50% better, maybe the second four could finish it all off? I just don't see the signs of that, though. So, my prayer is "Lord, I believe, help my unbelief." And you can pray with me.

I've been wanting us to try acrylic painting, ever since Will gave me a new paint set way back on my birthday. We finally got around to it with this video. Fun! One painting is still unfinished, but it's going to be as beautiful as the others when it's done, too.

Most mornings we let Cinnamon out to run around. Then, right at 9:00 she automatically goes back to her cage to lie down while we start school. A few mornings ago she came to join us in our studies, though. Feet lined up on the couch and her in the front row:

(Asya just called. Her exam has been postponed until Saturday.)

Remember the physical therapy for kids from the orphanage? After a break for the summer that's still going strong, thanks to generous sponsors. We had a little bump in the road yesterday, though. Because Ukraine now has car seat laws, the orphanage isn't going to transport kids without them anymore. So, my friend the therapist called me yesterday to find out if she had to cancel today, or if I had any ideas. With lots of phone calls, and some digging by Will, we got car seats, so therapy goes on.

I know I had other things to write about, but I need to send a cute little neighbour back to his side of the house and take a cute little son to music school....

Keytruda #8

Ever since Raia went to Kyiv with me in July, Asya has been wanting to go, too. This time she got her chance. We left Thursday evening.

It was hot in the train, and we didn't sleep much, but I was amazed at how Asya kept up the next day, even while tired. We had a great time together.

Everything was very routine at the clinic. I haven't been able to get my weight back up, and the blood test results weren't as good as last time, but there wasn't anything really bad. One liver number was a little off, my haemoglobin is back down a little, and protein is low. So, I'll be taking liver medicine again and trying to eat even better.

Decorations at the clinic

Lunch at the clinic

After we finished with the medical part, we got her new passport and Jaan's from the American embassy, then went on to visit my friend. Asya got to meet and play with the younger children there, but the girls her age were away for the day. She enjoyed the little ones.

We didn't sleep in the train much on the way back, either, but the sunrise was really beautiful. After we got home I rested and slept most of the day, but Asya went straight to art school and from there to music. We had calls with requests for her to spend the next night with one friend from art school and then with another friend from music school. We're such mean parents that we made her come home and actually sleep that night instead. She forgives us. 

My next trip will be December 6. That will be for a scan and consultation, and then based on those results, probably more Keytruda.

The Cushions

Just about a year ago, a wonderful family adopted two boys from here. Everyone thought their littler son was more medically fragile, but as soon as they got home, they found out that the bigger one's pressure sores were so infected that he might not have lived long without the better medical care they got for him right away. He's doing wonderfully now.

He has a friend here who has similar problems: Anton. In fact, we have pictures of the two of them together at one of their hospital stays for this. Jackie, the mom in America, decided to try to get a pressure-relieving ROHO cushion for Anton. She asked the company, and they donated a whole pallet of them!

The cushions arrived in Ukraine a while ago, and Will got a call asking if we would pay customs taxes for them. The first estimate was based on a sale price, and it was reasonable, so we agreed. But then the customs people looked up the cushions online, found out the regular price, and reevaluated. They called back to say that we owed $1700! That started a long and very involved process, but the long and short of it is that the shipping company and Will eventually got the shipment re-listed as humanitarian aid, so that it came through customs free.

Then, last week we got to the fun part. We delivered the first cushion, showed Anton and the head nurse how to use it, and counted up how many more they can use. I was very happy to hear that he's the only one with sores currently, but there are other kids who tend to get them. Each of them will have a cushion. Also, the nurse wants to try using them under some of the smallest, most fragile kids who are completely bed bound and don't move around. Even though these are intended as wheelchair cushions, they're big enough to be like mattresses for the littlest ones. Then we'll distribute the rest of the cushions to institutions where "graduates" from this orphanage live.

An added bonus was that my parents were here when we went, so they got to go with us.

(Also, the smaller brother recently had his 17th birthday. His mother--who got these cushions--posted about him on that day. Because the wonders of adoption and family need to be shared far and wide, please go read what she wrote and look at the photos.)

Catching up (health update)

I have a lot to write about, but I think the most important parts are

• parents' visit
• The Cushions
• health update.

I'll start with the last, because it's the easiest. I don't need to round up photos or links or explanations to go with it.

Almost two weeks ago I had Keytruda #7 in Kyiv. It all went well. My friend Anne sat with me, and we enjoyed a good lunch together afterwards. The doctor explained more of why they were so worried about my stomach troubles and weight loss. That could be signs of colitis, an autoimmune response in my colon, which would be very serious and would stop treatment. Keytruda is supposed to activate the immune system against cancer, but it can go overboard and start attacking the body. However, now they don't think that's my problem. Mine seems to be milder, probably just from antibiotics and other stress on my system. It is finally starting to get better now, so maybe I'll be able to gain some weight back, too. Although, now that they've seen how I handle treatment while underweight, they're not nearly so worried. Also, my blood work all looked good, which makes the doctor think there wasn't anything too serious going on. Even without the allergy medicine again, I haven't had any reaction.

Next time will be November 15. Asya wants to go with me. Then the time after that (early December) they'll do another scan, so Will and I will probably make that trip together.

I'll write about my parents' visit (they're home safely now) and the adventures of the cushions whenever I find time.