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.

Boring update and the week ahead

This week has been nice and quiet. Nothing unusual happened. It's hot; hotter than where my parents live in Florida, and that can be really hot if you're out and about here, because in Florida there's air conditioning.

Bogdan has been keeping track of days with circles on our white board. He filled in today's circle grey, because it was just a regular (good) day. Tomorrow's is black, because we're leaving, and he's sad about that. But after that, the next circle is connected to a drawing of a boy with a huge smile, holding a paint brush by a blob of paint: art camp!

Yes, we're gearing up to go to Kyiv for my next Keytruda infusion at the cancer clinic, and the timing is great, because all our kids will be involved in art camp here. It's a day camp, but it goes morning until evening and includes all three meals, so all they have to do at home is sleep. Jaan will be running the sound system and taking care of technical stuff. Raia is a counselor for the little kids. Asya and Bogdan will be happy campers.

Tomorrow Will and I will travel. Monday we'll be at the clinic. I don't have to be hospitalized this time, but they don't want me to leave Kyiv right away, so we'll spend the night and next day with friends there. Tuesday evening we'll get on a train to be home Wednesday morning. Again, we have regular tickets for the midnight train, but Will wants to exchange them for first class on the earlier train, like last time, if possible.

Thank you again for all your support and prayers!

This past week

Monday: I think it was a good, quiet day. It's already hard to remember. In the evening--one week since the Keytruda infusion--I noticed that my feet were itching a little.

Tuesday: I woke up with a terribly itchy rash covering my feet and starting on my hands. We wrote back and forth with my doctor in Kyiv, sent her pictures, and got a list of medicines. Will went out to buy them. I took the pills, put on the cream, and enjoyed visiting with friends for a few hours. By evening the rash was completely gone. I am so thankful for an accessible doctor and medicine that works!

Wednesday: As the doctor had planned back when we were in Kyiv, we had blood work done for the halfway point between infusions. We sent her the results, and she was pleased. My iron levels are going up. I'm still anaemic, but getting better.

Thursday: Our landlady is here from Italy (staying out front with the other family), and she had the windows and doors replaced everywhere in the house where they were still the old wooden kind. Bogdan was fascinated and "helped" the workers almost all day long. They were actually really patient with all the kids and got everything done by late evening.

Friday: Raia's birthday! (And cleanup from the aftermath of the windows and doors.) Four of Raia's friends came over, Will grilled chicken, and we had a great time celebrating.

Today: Rest, continue cleaning up, ministry at church for Jaan and Raia, errands for Will, a wedding....

First camp

(Will and our friends added an update on the GoFundMe page. Thank you!!!)


Camp season has started. All of last week Jaan and Raia helped with a day camp that our church put on for a nearby school. This was the first time something like this has happened: the school was required to put on a camp, so they asked the church to help. The school fed the kids, the church did everything else. There were games and crafts and trampolines and Bible lessons and more. It sounds like it all went really well, and they're already planning for next year, with two schools! (Raia helped make the photo props below.)

Home again

It's so good to be here!

I am completely overwhelmed by and grateful for all the love and support that so many people are sending us. I don't even know how to say thank you.

So far, I seem to be handling the first treatment quite well. I am VERY tired and kind of weak, but that's all. Now we pray that the medicine will work.

We do have so many people that we need to communicate with, but that might be slow in coming. If I'm lying down, I fall asleep, and staying upright can be a little challenging. So, thank you for your patience.

And, again, thank you to everyone!!!

Update & GoFundMe announcement!

Hi folks, Will here. There have been quite a few requests that we make known what kind of costs we’ll be facing as we go ahead with treatment of Phyllis’ cancer. As she’s currently tied up with IV’s in her arm, I get to write the latest update.

Yesterday we consulted with the chemotherapist at a world-class private clinic in Kiev. Her recommendation (together with a board of cancer specialists that studied Phyllis’ medical records to date) was that we proceed with immunotherapy. This is a cutting-edge treatment, and it’s how metastatic (subcutaneous) melanoma would be treated in the US & western Europe.

That said, it’s rather expensive. The overall treatment may cost less than in the States, but the actual immunotherapy medicine is imported and the prices are pretty much set. We knew that if we decided to fight this cancer, we’d need a lot of prayer, and a lot of help financially. While we have made a practice of not fund-raising since we first moved to E.Europe in 2001, we decided this is the exception to that rule.

We definitely need help, many of you have expressed a desire to do so, and we want to let you know how that can be done. A close friend of Phyllis’ has set up a GoFundMe account with a brief description of our situation and easy options to contribute:

(The GoFundMe account IS now working! Our team of experts straightened things out, and again, we apologize very much for the confusion.)

Here is the link.

Or, checks can be made out to:

Grace Bible Church,
8820 Idlewild Rd,
Charlotte, NC 28227

(Just please add a note that the check is for Will & Phyllis Hunsucker
Contributions through GBC are tax deductible and deposited directly to our bank account.)

We are thankful for all of you, friends and family near and far, whose lives have impacted ours, whose friendship has meant so much, even long-distance, and we will be thankful for any and all contributions. Phyllis lives a life of love and selfless service of others, she has impacted countless lives through her different activities and ministries, and we want to make it possible for anyone who so desires to be a part of our fight with cancer even as we're taking the first steps here.

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.

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.

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.
Recommendations
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.

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.

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:

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.

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.

Beautiful things

Raia's painting:

This evening:

Miscellaneous

• 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.

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.

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.

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!