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.

Nothing really new

My faithful little "dog"

We're doing well here, very busy getting ready for my parents' visit. They're arriving on Friday! Also, three completely different things came together this morning, so poor Will was trying to talk on the phone, keep up with emails, and do math with Bogdan all at once. He even had to use my phone along with his to get it all done.

One of those things was an announcement from the US Embassy that they'll be in Kherson on Thursday. Two of our children need new passports. I had kind of been thinking that we would get them during fall break from school, but then when my parents were able to come, of course their visit outranked a passport trip to Kyiv. The embassy almost never comes here, so this is really great. But it means we need to get an appointment and pull together documents right away.

The Agape Photo Project started in our region last week. Our three older children helped at the orphanage here in town. This week the team will be traveling to more orphanages, and our kids (and maybe Will?) will also go on some of the trips. Raia is probably actually going to be doing the photography on Wednesday.

A Photo Project helper

We bought a scale last week and were happy to see that I was up to 50 kgs, which is where the doctors would like to see me. I'm back below that again now, but not far. I've felt good this whole time and don't think they'll have any problems with giving me more Keytruda on Friday. Train schedules have been a bit weird, but I just now got myself a return ticket for Saturday; I already had one to go on Thursday.

I'll close with photos from our nature walk this morning. (I liked that as we left the house this morning, Babushka O. from across the road stuck her head out and asked if we were going on a nature walk, as if that was what everyone does. We're no longer the weird homeschoolers.)

Papa picture

The art school posted photos from Bogdan's class of the kids' portraits of their fathers. They also sent out a few photos of the works in process over the past few lessons. Oh, and there was one of Asya, too.

It's one week since Keytruda for me, and I'm doing well. No side effects, except that I want a nap every day, and I'm usually ready for bed by 8:00. I'm going to buy tickets for the next trip now. And--this is the fun part--it's for the day my parents arrive for a visit, so they'll be here when I get home afterward.

Keytruda #6

Thank you so much for all the prayers and support. My trip to Kyiv and back was quite uneventful. Two overnight trains in a row is rough, but I made it. Everything went really smoothly at the clinic, too. No trouble with the IV or anything. I was worried about that, after the IV disasters here recently.

The one complication that did come up is that I am now officially too underweight for the Keytruda dosage. Apparently it's all or nothing, too; when medicine is worth its weight in gold, you don't just dump a little down the sink before giving it to a smaller person. My own doctor examined me very thoroughly and decided that she couldn't approve it, just because of my weight. So, she called in the head of the chemo department. That doctor also examined me and very tentatively approved. She cancelled the sleepy medicine, too. (That's the allergy medicine they've been giving me to avoid a repeat of the little rash I got after the first time.) Without that, I'm tired, but I didn't have the extreme sleepiness during and after that I usually get. But, she said that if I have the slightest reaction of any kind, we're done with Keytruda for now.

I felt so much better than usual that I went to the botanical garden and walked and sat and took pictures after I left the clinic. That was wonderful! I even saw a squirrel there.

It is so good to be home now, too. Bogdan can't stop hugging me, and I'm loving that. I'm tired, but I'm loving my soft bed after the trains.

My next appointment is very tentatively scheduled for October 25, but they said not even to buy tickets yet. We're supposed to see how things go for at least a week or more, then they will confirm, if I'm doing well (and gaining weight?). So, please keep praying!

Raia and the Americans

I think Raia has mostly recovered from her hard-working, fun week as a translator. Thank you for praying for her! We hardly saw her all week, because she left so early and came home so late every day, or some nights she just slept on a couch there. It was a great experience for her. I have a few photos of her with two of the Americans and two of the kids they were caring for:

Asya's birthday

One week ago was Asya's twelfth birthday. She had a great time celebrating! First, she got the bicycle she had been wanting (and needing. Our kids do a lot of commuting on their bikes.) Then Will took her and her friends to the big mall. They planned to go bowling, but it was too full, so they ended up at Jump Park, the trampoline and climbing place. After playing hard, they had dinner at MacDonald's. Asya was so sweet and flexible about all of it. Changes in plans didn't bother her at all. It was all exactly what she wanted, no matter what happened.