Prayers for Daniel

Thursday 04/03/2025

13:41 (CZ)

message from Daniel

The insurance company refused to psy the treatment

The insurance company did not approve the treatment because the internationally recommended procedures list three other possible double chemotherapy combinations. Lenvatinib is therefore not the only possible treatment and they should only reimburse unapproved drugs if it is the only possible treatment. They did not find that I would be an exception in some way and the doctors cannot think of any arguments for an appeal.

So I am now arranging treatment for three months as a self-payer. After three months, a control scan would be done and if success was seen, an appeal would be filed with the insurance company with proof that the Lenvatinib treatment works and the chemotherapy does not (so I am an exceptional case and they should make an exception and pay). The irony is that because of this, two additional PET/CTs will be done, the price of which will exceed the three-month price for the Lenvatinib treatment and the insurance company will therefore pay more. But the decision is made formally, not logically.

Zobrazit více

Do not send me any money yet. The collection will be carried out through the Diakonie CB account, where they offered us help with the related administration. We would have to tax a larger amount of donations.

I apologize for not writing for a long time. The insurance company does not meet the deadlines and I was negotiating with the hospital about the possibilities of further action. I did not want to write a message until I knew for myself.

P.S.: The flower “Neboj se” is trying to encourage us with three flowers.

Friday 03/28/2025

18:29 (CZ)

message from Daniel

The kindergarten that Vítek attends is at risk of closing due to a change in the law. Please pray that the kindergarten can continue and Vítek does not have to change kindergarten.

Tuesday 03/25/2025

18:33 (CZ)

message from Daniel

Treatment is still being negotiated and waited for. It has not been decided yet what will happen.

For now, I want to write about Věra

Today Věra trained assistants from the last area of service at work. Her work is very appreciated and Věrka also enjoys doing it. Now she will finish the evaluation and during or at the end of April she will start maternity leave.

Věra is doing well in her pregnancy and the baby seems to be growing well and healthy.

Monday 03/24/2025

18:24 (CZ)

message from Daniel

Today, the insurance company announced that they are sending the case to a committee for a decision. So it is not yet clear that they will reject it, but it is an indication that they will.

Whether there will be a collection depends on the doctor's decision, whether he will order the medicine for me or whether it will wait.

Wednesday 03/19/2025

12:29 (CZ)

message from Daniel

The insurance company's decision is not yet available (although it should have been). This looks promising, as they usually send rejections on time. But then we have to wait until next week (the insurance company's next official day is Monday).

Tuesday 03/18/2025

18:04 (CZ)

message from Daniel

The doctor hasn't called all day... 🤔

Monday 03/17/2025

14:07 (CZ)

message from Daniel

There is no one at the hospital's Department for Communication with Insurance Companies today, so the doctor is waiting until tomorrow.

Sunday 03/16/2025

09:24 (CZ)

message from Daniel

Today is better, I'll try to go to the church.

Saturday 03/15/2025

17:35 (CZ)

message from Daniel

It's better today, the pain is the kind for which painkillers are working better. But it's not good yet. I don't know what caused it.

Friday 03/14/2025

14:54 (CZ)

message from Daniel

My stomach still hurts, like I have bloating.

Thursday 03/13/2025

12:47 (CZ)

message from Daniel

I finally got through to the doctor. There's still no response from the insurance company and the hospital doesn't have another dose. The doctor suggested waiting until Monday, when the deadline for a response expires. He thinks they might approve the request because there's no word yet that they're sending the case to a special committee for review, which is what they usually do when they don't want to pay for treatment.

Monday 03/10/2025

16:05 (CZ)

message from Daniel

We are visiting my sisters. Here on a trip in Holašovice (UNESCO village).

Wednesday 03/05/2025

18:34 (CZ)

message from Daniel

I spoke to the doctor. I have the medication until next Wednesday. On Monday the doctor will find out if the insurance company has responded (probably not yet; they have a month from delivery). If not, he will find out if they have any more surplus and if not, he will order one pack, which I will pay for. It will be available by Wednesday.

Thursday 02/27/2025

18:42 (CZ)

message from Daniel

I took 20th pill today, so it looks like it will be possible to continue the treatment. There are side effects, but they can be suppressed with medication.

Next week I'll see if the insurance company responds in time, or if I need to buy one dose. I'll let you know in time if necessary. I have 10 more so far.

And I'm sending you “the universe” from Vítek for joy.

Tuesday 02/25/2025

12:03 (CZ)

message from Daniel

I am thankful for another year of life.

Friday 02/21/2025

16:09 (CZ)

message from Daniel

“Before this day is over, the wives of the officials of Persia and Media will find out what Queen has done, and they will refuse to obey their husbands. They won't respect their husbands, and their husbands will be angry with them.” Esther 1:18

Věrka and I finished reading the book of Esther. I think it is a nice encouragement for the current political situation.

At the king's court, the main problem was that wives could stop obeying their husbands, and the royal ring with the right to act on the king's behalf was frivolously entrusted to Haman's hands.

Zobrazit více

And yet God used the king Ahasuerus to save the Jews.

Wednesday 02/19/2025

19:28 (CZ)

message from Daniel

I don't cook like this every day, but today I managed to cook and eat it, so the medication is still acceptable. Yesterday the swelling in my throat got worse, but today it was better. The root of my tongue still hurts when I talk and swallow larger bites.

Monday 02/17/2025

13:54 (CZ)

message from Daniel

Since I am tolerating the new medication acceptably so far, the doctor will submit a new application to the insurance company to have the treatment reimbursed. He will have arguments:

that I can tolerate the treatment,

that it is recommended by three independent institutions,

that nothing else has worked.

Sunday 02/16/2025

08:38 (CZ)

message from Daniel

For now, I can still continue.

Friday 02/14/2025

20:04 (CZ)

message from Daniel

It's better than I expected the day before yesterday when the side effects started to appear. They do appear, but for now they can still be compensated for with other medications. Now I'm starting to feel a swollen neck. That's probably the deciding factor, because if this develops like with Sorafenib, the treatment ends. A neck swollen from the inside is impossible to get over.

Thursday 02/13/2025

20:12 (CZ)

message from Daniel

Well, we will see... It's acceptable for now.

Wednesday 02/12/2025

18:36 (CZ)

message from Daniel

Well, let's see... My eyes are starting to burn and my head is aching. Cold-like symptoms, like after Sorafenib. It doesn't have to mean anything yet. Vítek has a normal cold again.

Tuesday 02/11/2025

08:36 (CZ)

message from Daniel

So I have my first dose of Lenvatinib in me.

Monday 02/10/2025

12:16 (CZ)

message from Daniel

Further treatment

The doctor said that they had not come up with anything new in Prague, they just recommended again to try Lenvatinib, which the insurance company had previously refused to pay. The doctor suggested trying chemotherapy to satisfy the insurance company and then submitting a new application. (The insurance company had cited the possibility of trying further chemotherapy as an argument. Now the doctor was also afraid that they would use the argument that I did not tolerate Sorafenib, which is a related type of drug to Lenvatinib.)

Zobrazit více

I refused chemotherapy. I suggested a break in treatment to recover, or starting treatment with Lenvatinib as a self-payer to test whether I would tolerate it.

The doctor called the department and found out that they had one package that another patient had returned because he did not tolerate the treatment well. So this package had already been paid for. I have this package at home and I will start taking it today. Side effects are said to usually appear after a week, or the treatment is then tolerated relatively well in the long term (before the side effects accumulate to the point where it is impossible to continue, which is how treatment usually ends because a complete cure is not expected from it, only a stoppage of growth). Therefore, after a week, I will call the doctor and if I tolerate the treatment, he will submit a new application to the insurance company, this time with the argument that I can really take it and it is recommended by three independent hospitals. If I do not tolerate it, it will save me from arguing with the insurance company.

Sunday 02/09/2025

09:04 (CZ)

message from Daniel

We are celebrating our sixth wedding anniversary. We are thankful for the time we spent together and we look forward to what we will experience together.

Tuesday 02/04/2025

18:32 (CZ)

message from Daniel

Vítecek is recovering and so is Věrka. Thank God I didn't catch it.

Thursday 01/30/2025

12:41 (CZ)

message from Daniel

I have a cooking helper at home! He's just coughing a little.

Monday 01/27/2025

12:15 (CZ)

message from Daniel

According to the ultrasound, our baby is fine.

Wednesday 01/22/2025

18:32 (CZ)

message from Daniel

“All hard work brings a profit, but mere talk leads only to poverty.” Proverbs 14:23

Saturday 01/18/2025

10:46 (CZ)

message from Daniel

Our car is repaired.

Monday 01/13/2025

17:30 (CZ)

message from Daniel

Proverbs 12:25

Anxiety weighs down the heart, but a kind word cheers it up.

Proverbs 12:28

In the way of righteousness is life; And in the pathway thereof there is no death.

Thursday 01/09/2025

10:27 (CZ)

message from Daniel

What makes me happy

That the baby is fine

That Věrka is doing well during her pregnancy

That Vítek has settled in at kindergarten and is in a good mood at home

That I don't have to take Sorafenib and I didn't have to argue with the doctor about it

What worries me

Car in the service with a broken clutch (an old diesel is not ideal for driving around Liberec)

Lung metastases

What am I afraid of
I guess I'm not afraid 🙂

Wednesday 01/08/2025

11:02 (CZ)

message from Daniel

Mixed results

The doctor wrote “mixed results” in the report. This means that nothing has actually changed. The existing tumors are more or less the same and no new ones have formed.

The good thing is that the condition is not getting worse acutely. The bad thing is that it is not getting better and all available treatments have been exhausted.

The treatment with Sorafenib will not be continued and since they have no other ideas in Liberec, they are sending my entire card to Prague to see if they have any ideas there.

Zobrazit více

More details:
The tumors in the bones (three) are the same size, but slightly less active. If I could tolerate a higher dose of Sorafenib, they would try to continue; to test if the treatment is not responsible for it. But if I can't tolerate a lower dose well, there is no point.

The tumors in the liver are larger, but less active. This could mean that they are starting to grow (then another operation would be necessary), or that they are dying and falling apart. These are now the least serious, because an effective intervention has been tried.

The most serious are now the tumors in the lungs, because they are slightly larger (in tenths of a millimeter), equally active, there are several of them and treating them locally in the lungs is more difficult than in the liver. Moreover, if they grew to the size of those already existing in the liver, they would directly threaten life and cause severe pain.

So the priority is to stop those monsters in the lungs.

If they don't come up with anything in Prague, the doctor would want to start a light chemotherapy. Not with the intention of curing it, but at least to torment the tumors so that they grow as little as possible. With the hope that if I can hold out for a few years, maybe a new treatment will be found.

A poor hope. Fortunately, we have better one.

Tuesday 01/07/2025

17:31 (CZ)

message from Daniel

Proverbs 8:30-31

Wisdom speaks of having been possessed by the Lord from ancient times, of having been present at the Lord's creation of the world:

“... Then I was constantly at his side. I was filled with delight day after day, rejoicing always in his presence, rejoicing in his whole world and delighting in mankind.”

May we also have the kind of wisdom that is filled with delight day after day before the Lord.

Sunday 01/05/2025

21:30 (CZ)

message from Daniel

My New Year's Verse

For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.
Matthew 7:8

Friday 01/03/2025

19:21 (CZ)

message from Daniel

So here's to a happy outlook for the new year 😃.
I'm going for a PET/CT on Monday and I'll find out the results on Wednesday. What will or won't be there?

Saturday 12/28/2024

11:54 (CZ)

message from Daniel

I wish you much God's beauty in the coming year.

Monday 12/23/2024

08:22 (CZ)

message from Daniel

To us, to us a baby will be born

We agreed that Christmas is a good time to share with you about a miracle in our family. This year we are not only expecting the birth of Jesus, but also another baby. Věrka is pregnant.

After all the chemotherapies, radiation and other medications, conception should have been biologically impossible. But with God, all things are possible.

According to the first screening, the baby is fine and we expect the birth in June.

So after this miracle, we are expecting the second miracle. I will have my next scan on January 6th.

Wednesday 12/18/2024

19:53 (CZ)

message from Daniel

“Keep your heart with all vigilance, for from it flow the springs of life.” Proverbs 4:24

Monday 12/16/2024

20:28 (CZ)

message from Daniel

“The Lord by wisdom founded the earth; by understanding he established the heavens; by his knowledge the deeps broke open, and the clouds drop down the dew. My son, do not lose sight of these. [...] If you lie down, you will not be afraid; when you lie down, your sleep will be sweet.”
Proverbs 3:19-21 and 24

I lie down and I am not afraid; and if I add painkillers to it, I have a sweet sleep.

Saturday 12/07/2024

09:57 (CZ)

message from Daniel

Don't be afraid flower. I bought it before chemotherapy started and added a “don't be afraid” tag. That's how it got its name. Since then, it has been attacked by parasites that eat its leaves. It has been completely cut off from all its leaves several times. It has dried up twice, until its brown leaves hung down to the windowsill. Yet it always recovers and blooms with two flowers at least five times a year. I feel somehow related to it :)

Tuesday 12/03/2024

19:43 (CZ)

message from Daniel

Fatal error: Uncaught ValueError: mb_strpos(): Argument #3 ($offset) must be contained in argument #1 ($haystack) in /data/web/virtuals/18173/virtual/www/subdom/daniel/index.php:114 Stack trace: #0 /data/web/virtuals/18173/virtual/www/subdom/daniel/index.php(114): mb_strpos('When I take the...', '\n', 500) #1 /data/web/virtuals/18173/virtual/www/subdom/daniel/template.php(44): format('When I take the...', 'en') #2 /data/web/virtuals/18173/virtual/www/subdom/daniel/index.php(62): include('/data/web/virtu...') #3 {main} thrown in /data/web/virtuals/18173/virtual/www/subdom/daniel/index.php on line 114