I don't know how to start and what to write…
Lump in throat… I've been driven into a dead end.
At last week, we had a puncture, and they did it prematurely because my platelet count dropped sharply. The doctors added a hormone, but it had no effect . They found blasts — 18% in km. Kira had a rejection with a relapse. I cried all night, got ready the next morning, and talked to the head of the department. He explained that, unfortunately, this happens with our diagnosis. Kira needs a second transplant. If it's not done, he gives a maximum of six months on platelet and blood transfusions, if it's — 30−40% successful. I asked about the amount, and the doctor replied that the clinic had previously asked for 40 000 €if this had happened within 6 months after the first transplant. I calmed down, agreed, and asked for an invoice to pay it, as there was no time, and the donor would only be tested after payment. The doctor said he would contact the administration and the accounting department so they could calculate everything.
Yesterday he came in with papers, but instead of 40 000 €which had already been prepared, it turned out to be 80 000 €. Honestly, I almost fell into the abyss… Since the last collection, there was 26 160 € cash left, several months' payment in advance for the apartment, and about 1000 € food left on the card.
I hoped I wouldn't have to beg people anymore, but fate has given me another kick. There's no time, just like in the first time, now I'll try again to submit the documents to the Ministry of Health. But the Ministry of Health needs time. I sent a letter to German CF «Kinder», and also contacted our bees — CF «Little Bee», who were collecting for Kira. they had some money left over from our previous collection — about 800 €. They promised to buzz around and help, and they'll start the collection again. Thank you so much for not refusing and constantly asking how Kirill is. I wrote to BF «Pills». They advised me to contact Ministry of Health.
I can't give up and can't just sit for six months and wait. I panic and fear, but I clearly understand that no one but me will fight.
We are currently in the hospital, her blood counts are low, and she's getting platelet transfusions every day. The doctor decided to try a new drug, azacitidine, and isotretinoin again. Kira has a fever periodically, has refused food, so they started her on intravenous feeding, and she is suffering from diarrhea. And she's so active, she sits there, watches cartoons, and makes orders for Santa Claus every day. (The store window across from us is decorated with Christmas trees and Santa Claus, it all sparkles at night.)
Friends, whatever needs to be done for me, I will do it, but I beg you — help me save the child! She's my hero. She survived high-dose chemotherapy and BMT, and emerged from intensive care (where the doctors were in shock from how Kira, wearing an oxygen mask, on morphine, and other knockout drugs, watched a Peppa Pig cartoon with half-open eyes and tried to remove the sensors.
Kira spent most of her life in hospitals, she underwent about 15 general anesthesia (I have already lost count), she had opened and cleaned 5 lymph nodes, had 3 central catheters inserted, a biopsy taken, and about 10 punctures performed. My daughter has been on a strict diet for a long time. She knows she can't eat without a mask, and she knows she can't eat before tests. I honestly don't know how many platelets and blood she received, but it was a lot! And despite this, Kira says she's a healthy girl, and that she'll just have to dig around a little more and then she'll go to Dana. You know, I don't have the right to give up. I know she's strong, she's my hero. She's my hero. She's my hero.
With respect, Kira's mother, Yulia. …
YOU SEE, I have no right to give up, I know that she is strong, she — my hero!!!
For information on how to help, see here.
13.03.2019
A huge thank you to everyone who has supported Kira in her fight against her illness throughout this time! Because a year has already passed since the BMT and funds for the next follow-up examinations have been collected, the decision has been made to close the application.
News from Kira's mother:
"Hello! Today is our celebration – One year since the second BMT. And this celebration wouldn't be possible without all those who are helping us fight the disease. A huge thank you to each and every person, our donors and doctors!
We're home now. In January, we went to the clinic for our first checkup. Now, every 3-4 month, we need to be there for tests, examinations, observations, and adjustments to Kira's medications (there are already 5 items left, and that's encouraging; I hope they only reduce the cost in the future). These checkups are no longer included in the bill that was paid. They will need to be paid. The next bill was for 2500€. This is only the clinic costs. We will also need money for travel, accommodation, etc. The doctors determine the interval between visits based on the results of all the examinations. If the child's condition allows, this interval is extended. This time, we were in Verona for two weeks; we were released a little early so Kira could celebrate her birthday at home. Otherwise, the duration of a checkup visit is — about 3-4 weeks. We've had an ultrasound, a dermatologist, and an ophthalmologist. Kira had a biopsy, a test for chimerism, various viruses, and so on. There are some minor issues with her liver function tests and blood biochemistry; some indicators are elevated, including TSH. The cause is — the hormones my daughter is taking. So, the doctors changed the dosage. Kira is not allowed in crowded places yet. We haven't started vaccinations yet, and the measles that's spreading across Ukraine is seriously scary. As for my daughter, — she's a smart girl, she's matured a lot, and she's changed. Her clothes are finally starting to fit, as Kira's height gains were minimal due to her illness. She's been bored all day, though, and she demands attention. But for now, we only interact with the children outside, and even then, we try to keep our distance. Sometimes, of course, I have to coax Kira to eat and take her medications, but those are minor issues. The main thing is — that she's home and smiling. We'll be getting her blood work done in a few weeks. I hope it's better than the last ones.
Thank you all so much again.
Sincerely, Kira's mom."
23.01.2019
Hello, our friends, supporters, and acquaintances! We've already had an ultrasound, a dermatologist, an ophthalmologist, a biopsy, tests for chimerism, viruses, liver function tests, and so on. Soon we'll be getting blood work done again and waiting for the results. For now, we're restless, strolling through our beloved Verona, exploring the little streets of this beautiful city. It's much warmer here than at home, so you can 2 - 4 wander outside for hours.
Kirochka made me happy. — She handled some of the tests well; she's obviously gotten older and understands a lot. Of course, when she was in pain, there were tears. Kira's hands are blue from the tests. Also, during the tests, they punctured a vein and pulled out the catheter.
We live in the same place as before. — We were lucky that the room was available. So we didn't have to get used to a new environment. — Everything here is familiar to Kira. As always, a huge thank you to everyone for your support, help, understanding, and prayers. Thanks to you, we are taking small steps forward. Hugs, kisses, and again: “Thank you!”
Sincerely, Yulia.
10.12.2018
Kira has now completed the main course of treatment. It has been decided not to close Kira Chenchik's application yet, as she needs to undergo follow-up examinations every 3 month, which is what the funds will be used for.
Thank you all for helping Kira!
30.11.2018
Hello! We have some changes. – Kira has been sent home for three months. I'm happy,
but, at the same time, I'm very worried. We'll soon need to get some tests done at home in Ukraine.
And I don't even know how I'm going to persuade Kira, because it's a painful procedure, and she no longer has
a catheter.
Our daughter tolerated the flight well, although we were very tired. More than twelve
hours on the road – first by car, then by plane, then a transfer to another plane – and
long-awaited Odessa-mom.
Kira asked a lot of questions: "Where will I sleep there?", "Do I have any water there?", "And
Are the toys waiting?". It turns out she forgot the house, and for the first week she was busy – arranging
toys and things.
We brought a suitcase of medications and are taking them as prescribed, – four to
eight doses a day. Then a follow-up visit to the clinic for tests, a puncture, and
medication adjustments.
Honestly, I was a bit scared to go home, even though I really wanted to.
Almost a year and a half in a foreign country... But the main thing is – the result! Without your help, it would not have been
existed.
Thank you so much for Kira's smile, thank you for giving her life, thank you to the donor for
the cells, thank you to the doctors and medical staff. We thank everyone for their prayers, support, and money, on which, unfortunately, life and health depend in our time. May all be well in your homes.
Thank you!
Sincerely, Yulia.
08.05.2018
Hello. Kira's blood tests aren't normal yet, but we hope they'll gradually stabilize. They're giving her Foscavir IV drips for the virus several times a week. We're taking a lot of medication, albeit with some difficulty. Kira is running around, smiling, and ordering food. Thank you all so much for believing in us and, of course, for your help.
Sincerely, Yulia.
05.09.2017
Hello! 1 Kira had a BMT in September. She tolerated it well, although she had a high fever afterwards, high blood pressure, vomiting, and diarrhea. In short, everything is fine. Today she seems fine; she's sitting, playing, and barely even freaking out. Sincerely, Yulia.
25.03.2017
A huge thank you to everyone who helped Kira raise money for her surgery! Yesterday morning, Yulia, Kira's mother, called and said that the Ministry of Health commission had made a positive decision and the bone marrow transplant would be funded from the budget.
The funds deposited into the foundation's account ( "Little Bee" (23580 UAH) will be temporarily frozen. If the transplant is successful and the funds are not needed, they will be used to help children in the oncohematology department of the Regional Children's Clinical Hospital.
