Thursday, November 28, 2019

Beautiful autumn... 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.

Wednesday, November 27, 2019

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....

Sunday, November 17, 2019

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.

Tuesday, November 12, 2019

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.)

Thursday, November 07, 2019

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.