Friday, May 31, 2019

Very short update

There's so much I need to write, but I don't have the brain power for it, and I need to hurry before an IV.

Answers to the prayer requests we gave before, in no particular order:
-There is no metastasis in my brain. (Good!)
-My tumors do not have the genetic mutation that responds to target therapy. (Sad.)
-Travel was really good and easy. (Picture is from super-deluxe train compartment on the way to Kyiv.)
-This clinic is amazing!
-Our children are doing well at home and/or with friends.

Will is going to try to get home tonight. I have stayed at the clinic, in their inpatient area. (Night and day, compared to public hospital!) They are trying to bring my hemoglobin levels up now and plan to start immunotherapy (Keytruda) on Monday. If I handle that well, Will can come get me on Tuesday, and I'll have three weeks at home before the next infusion.

Tuesday, May 28, 2019

Travel plans

Yesterday we had a nice full day of visitors and lots of playtime going on all around us. By the time the clinic called to work out scheduling, it was late, and by the time we finished working on arrangements, it was later, so I went to bed instead of updating you all.

My first appointment in Kyiv is on Thursday. Will got us first class train tickets for overnight Wednesday-Thursday. We haven't been able to do an MRI here, so we'll do that first when we get there. Then we'll see the doctors. They should have test results by then and should be able to work out and start on a detailed treatment plan. We'll spend the night in Kyiv. Friday can be a rest day for me, or if I need to do anything more at the clinic, that's possible, too. Then we want to come back overnight that night, but there weren't any tickets available yet.

Prayer requests:

  • for the travel. This could be quite difficult for me; pray that it won't be!
  • for the doctors and everything at the clinic.
  • for our children at home while we're gone.

Thursday, May 23, 2019

Summary and prayer request

I wanted to translate this little excerpt of the paperwork from the clinic in Kyiv, because it's a very clear summary of my condition:
C43.9 Malignant melanoma of the skin, unspecified
Metatastic melanoma in right breast, in lymph nodes of right underarm, in right lung, in left adrenal gland, in the soft tissue of the right hip without known primary.
1. Check for mutation of BRAF V 600 gene.
2. Contrast MRI of head.
3. Decide treatment plan with consilium of doctors, after examination of patient and receiving results of diagnostics.

And our new prayer request: Raia has a cold. Please pray that she'll get well fast and won't pass it on to anyone else. That's a little thing, but could be big right now.

Wednesday, May 22, 2019

Kyiv clinic

Will called from Kyiv. His consultation at the private clinic in Kyiv was very encouraging. We'll probably be going there quite soon to start treatment, and then I would be able to continue at HOME. (Praise God!) He doesn't think we even need to check back in with the cancer hospital here. The clinic recommends starting with "targeted therapy." (Google that, if you want.) First we have some big prayer requests, though:

  • Pray that the cancer I have will respond to this targeted therapy. They will test for that now, and we should have results in three days.
  • I have to have a brain scan. Pray that, as our friend Woody says with his wonderful humour, "there's nothing in my head." And that we can get that scan done quickly and easily here.
  • Pray for wisdom and that this really would be the right path for us to start on.

Also, just to show how God is taking care of all the little details here: on Tuesday when Will needed train tickets, the internet showed that they were all sold out, but he went to the train station anyway. By the time he got there, one ticket had been returned for the way there, but there was still nothing for the way back. When he got to Kyiv Wednesday morning, there was one ticket available for this evening to come home. So, he'll be back tomorrow morning.

Tuesday, May 21, 2019

The next steps...

...are still pretty unclear, but we are taking them one at a time.

I did end up going to one of the Agape lectures on Saturday. It was wonderful to see friends from all over, to hear Nikolai Kuleba speak, and to be outside on the campus of the Christian college. It was too much for me, though. I was quite sick that night, and exhausted all the next day. I'm better now.

Will didn't go to Kyiv yesterday, because the doctors were having a meeting, and it was possible that they would decide to do more tests. Today they let us know that they're not doing anything more, so he hurried off to get a train ticket for tonight. He'll be in Kyiv tomorrow morning to get everything from them, and he also already has an appointment at a private clinic there in the afternoon, to talk to them and see what options they offer. We're praying that he'll be able to get a ticket home tomorrow evening, but there weren't any available now.

When he gets back we'll also go to the cancer hospital here, to see what they suggest. We also need to finish up with the regular hospital I was in here. They still haven't officially discharged me, because they were also waiting for final word from Kyiv.

So, pray for us at home with Will gone; it will be better for the children this time, with me home. Will's rushing to arrange nurses to replace him for the next few days. Pray for his trip and for wisdom. Thank you.

Here's a blurry photo of Raia and Asya at the wedding they attended on Saturday:

Saturday, May 18, 2019

Diagnosis and questions

The doctor in Kyiv wrote late last night to say that he thinks he's ready. It's melanoma. The head doctor there has to look over everything and might still say that they need to do some more reactions, though. Will can probably pick up everything Monday.

I feel baffled. Although, now I understand why that doctor kept writing that it was difficult and unusual and the whole department was working on it. Just from quick internet searches I'm seeing that "non-cutaneous" melenoma or "unknown primary" melanoma is rare and different from skin cancer. (I don't even know if that's what I have. I just found those phrases online.) If I look for breast cancer or any other common cancer, there are pretty pages with understandable info written for patients and normal people. Now I'm mostly finding medical journals and technical info that I pretty much can't decipher.

From the beginning we've said that we don't want questions, and that's true. But it doesn't mean that we don't want to hear anything from anyone! We have really appreciated all the responses we've gotten and every time someone has taken the time to write. There is just so much that we don't know, and we get tired of repeating answers to questions like, "What kind of cancer?" If you've read this, you know as much as we know about that. "What stage?" Don't know yet. "What are you going to do?!?" No idea. "How do you feel?" That's the hardest one! It varies, but mostly I'm fine.

Today is the big celebration of Agape's 15th birthday. I've considered going, and I feel well enough to, but I'll probably stay home. I'm happier here. The visiting leaders of Agape did come visit me and pray for me, and that was wonderful. Will and the kids have Agape lectures (Will), a wedding, classes, children's ministry, and the birthday to attend today, so I'll hear about all that from them tonight.

Monday, May 13, 2019

Family Day(s) and Nikolaev

Family Day is a tradition in Kherson now. The local churches put on a festival for the city every year. This year it was rainy off and on, but it still went well. Jaan and the rest of the theater group wore costumes, posed for photos, and talked with people. Raia helped with handing out balloons. Asya sang with the church children's choir. Bogdan was very excited because one of his paintings was chosen to be in an exhibit, but they ended up not putting the art out because of rain. So, he just had fun running around, jumping on trampolines, and playing with this friends. Here are some photos.

That was Saturday. Then, on Sunday the theater group and others from our church went out to help with a similar program in a nearby village. I caught glimpses of Jaan in some of those photos. He thought there were even more people at the village Family Day than in the city, because it seemed like the whole village came. Plus, the weather was more cooperative.

Also on Sunday, Asya travelled with the music school orchestra to Nikolaev for a contest. They got first place.

No cancer news. I'm still just enjoying being home.

Friday, May 10, 2019

Beautiful things

Raia's painting:

This evening:

Wednesday, May 08, 2019


  • I have really been enjoying the beautiful photos from the hike Jaan went on, like the one above and these. This video shows a little more of what it was really like, though.
  • Asya had her flute exam today and did great. At first they said she wouldn't have to take it, since she had missed time with her broken arm and done so well in contests and concerts before that, but at the last minute they changed their minds, and she had to go.
  • Bogdan and Asya both had friends come over to play today.
  • Raia finished a beautiful painting; I'll show it to you tomorrow.
  • I got my stitches taken out, and that didn't even hurt. I was very afraid, because when I went on Monday for that, it was too early, but they did a very painful wound cleaning. Today was much better.
  • They keep writing to us from Kyiv that they're working on the biopsies, but no answers yet.
  • Will did my shot tonight, and he did a good job, so I guess he'll be taking over for the nurses.

Sunday, May 05, 2019

No news

It is still just so good to be home! Jaan came home from his backpacking trip today, too, so now everyone is here. I think he's just as glad to be home as I am.

I haven't written, because there hasn't been any news. The electricity was off on Friday, too, so it wouldn't have worked to write then anyway. (Lately the online electricity schedule has been amusingly exact. They used to write 9:00-17:00 and such. Not anymore. One day last week it was supposed to be off 11:08-11:41. Friday it was just from 11:46, though, without an end time; it came back toward evening.)

Anyway, we're just waiting for results from Kyiv and for my discharge papers from the hospital here. Will went back to get the latter Friday and Saturday, but they weren't ready. Tomorrow I'll go get my stitches taken out, and maybe they'll be ready then. If someone calls from Kyiv, Will might go to pick up everything from them on Tuesday. We'll see.

Thursday, May 02, 2019

I'm home!

It feels to good to be here, and it's so quiet that I feel like I have suddenly gone deaf. I sat outside for quite a while, enjoying little boys, ducks, sunshine, and green grass. Then I took a nap. I got one shot for pain before I left the hospital, then a nurse from church just came by to give me one for the evening, a bit early. She's coming back in the morning, after her shift at work.

Will has gotten calls from the cancer institute in Kyiv several times already today. They might have results for us by tomorrow. That's much faster than we had heard. Once we have those results, we'll know exactly what kind of cancer I have, and we'll be able to talk about what the next steps are.

Wednesday, May 01, 2019

May Day

There's not really anything new today.

Our three younger kids had a great May Day with friends, going on a little hike, making pizza, then getting dropped off at the hospital to see me.

I haven't heard anything from Jaan today.

Will's home from Kyiv.

I might get to go home tomorrow!