5 January 2017 A few hours ago we received the news — Arseniy has become an Angel!
We all really understood that it would be difficult for the child to pull through, but we hoped and we believed! And they also gave the parents hope, because being left alone for alone with a child's illness — is very scary...
A huge thank you to everyone who helped both financially and emotionally!
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Arseniy's story is very long. Yes, imagine, a little boy can have a long and difficult history already at seven years old. I want to write from the very beginning, so everyone understands how it all began, how it continued, and how, unfortunately, it hasn't ended yet. Unfortunately, it hasn't ended yet, and it hasn't ended until now.
Arseny was diagnosed with acute lymphoblastic leukemia back in December 2011 when he was 3 years old. Before this, the child was often ill. His parents underwent numerous tests in hospitals and private clinics, but no one could determine the real diagnosis. They said it was Staphylococcus aureus... A very long and complicated treatment began; the hospital became a second home for Arseniy for a long time. During this time, the boy endured multiple chemotherapy treatments, which were accompanied by pain and tears. In September 2012 he underwent brain radiation.
Thanks to treatment and the family's prayers, Arsyusha began to recover, and at the end of 2013 the year, maintenance chemotherapy was completed. During this time, year-old Arseniy transformed from a 5 child into a little adult, capable of compassion, empathy, and love, with a highly developed sense of duty and responsibility. New horizons opened up for him, and he was eager to live. In 2014 at 6 age, Arsyusha entered music school in the piano department, attended choir, and studied musical notation. And in the fall 2015 at 7 age, Arseniy dreamed of going to 1 grade in a comprehensive school. He enjoyed preschool preparation and was full of hope.
But trouble struck — a relapse. In July 2015 the disease returned. Now all of Arsyusha's dreams and plans — are in jeopardy. After the first round of chemotherapy, the sentence — is an urgent bone marrow transplant. A transplant can only be performed from a not a related donor. As of this type of surgery is currently not performed in Ukraine.
Arsyusha needed an expensive surgery abroad. The cost of such an operation ranges from 150 thousand dollars and higher. While during the first treatment the family managed with their own funds and the help of friends, then for the operation, they had to start a fundraiser. As you can imagine, the sum is enormous.
To the general joy of everyone, the Ministry of Health of Ukraine, after much discussion, financed the child's operation and transferred the money to the account of the clinic in Poland, where Arseniy was undergoing treatment. The transplant was successful 14 January 2016. And this little hero, three months later, returned home to Ukraine to recuperate.
And after nine months, the disease returned again. Arseniy had a relapse!!! Arseniy and his mother went to get tested at hematology Odesa and detected 60% blasts in peripheral blood. Since September, Arsyusha's legs started hurting and sometimes he got a little tired. But he also started eating a little better. We couldn't just do a puncture and we constantly monitored his complete blood count and his general condition. A week ago, his lab results were excellent, but his condition left much to be desired. Arsyusha contracted a viral infection, and it pushed the blasts to emerge. Arsyusha is currently in a Polish clinic. The doctors suggested we try a high-dose protocol.4 The chemotherapy block costs 166 471 euro, which includes an experimental drug costing 50 000 dollars and the transplant itself costs 111 771 euro. I don't know how we will manage to carry out all this, but we're abandoning our son to certain death. We can't because parents shouldn't bury their children. We hope for your sincere support and heartfelt prayers!
05.01.2017
Arseniy passed away today. He fought for a long time, and we all had great hope that everything would be fine. But alas! Thank you to everyone who helped the boy's family fight for their son's life! They still need help to pay off the debt at the clinic.
15.12.2016
At the end of last week, Arseniy's parents were told that the best option for the boy would be surgery to remove the fungus from his lung. The anesthesiologists categorically did not want to operate on Arseniy, as after the surgery, only his right lung would be functional for about a week. Given Arseniy's weakened body and his organs not functioning as well as those of a healthy person, such an operation could have been fatal. The decision was made to postpone the operation for now and continue his oncology treatment. Since Arseniy would not be able to withstand a significant amount of high-dose chemotherapy, he was given the first treatment protocol for lymphoblastic leukemia (as was done during the initial treatment when he was first admitted to the hematology department). 50% From the first day of this treatment, his temperature returned to normal and his condition improved. Arseniy can now get up and walk more easily. He is in a good mood and enjoys playing with his beloved sister, Anyutka. Doctors will monitor Arseniy's condition weekly, including tests and CT scans. The treatment could change any day. Also, after some time, granulocytes will be isolated from donors again and administered intravenously to combat the fungus and maintain his overall health.
02.12.2016
"On Monday, Arseniy had a CT scan to check the progress of the fungus. Unfortunately, the fungus is behaving poorly; the old lesion hasn't shrunk; it's even grown a bit, scattering small spots throughout his lungs. It's not very extensive yet, but the problem is that the fungus isn't responding to a very strong antifungal medication. Because of this, his temperature rises 3 - 4 times a day. Thankfully, the infection was controlled, and the latest cultures were already negative. They started administering granulocytes on Friday, and on Sunday, his white blood cell counts started rising slightly. On Tuesday, lab technicians examined the blood under a microscope to check for bad cells, but fortunately, only good cells were found in the blood (today, leukocytes 0.2). Due to the prolonged absence of leukocytes in the bladder, the BK virus has reactivated. And we're having the same problems with urine again. All this worsens the overall picture and increases the cost of treatment.
To help Arsyusha cope with the nasty fungus and relieve bladder inflammation, granulocytes were collected from our dad's blood, since they now have the same blood type, and half will be collected today. We will pray that Arseny's body accepts these cells as its own and finally begins producing its own!
We are very grateful to everyone who helps and supports us! Yes, this is a very difficult time for us, but we look to tomorrow with faith and hope! We love our son very much and will fight for him! May the Lord protect you and your families!"
28.11.2016
"Hello, dear friends! Arseniy's condition remains stable but serious. This is due to the fact that bacteria were found in blood cultures from his eyebrow, and despite antibiotics, the levels in his blood have not decreased. Therefore, last night, Arseniy's eyebrow was removed and a subclavian catheter was temporarily inserted. He had a high fever all night and a sore throat from the anesthesia. He is completely exhausted and constantly wants to sleep. We also had a CT scan of his lungs on Monday to see how the fungus is responding to the new medication. Unfortunately, the lesion has not shrunk, and yesterday Arseniy was given the maximum dose of the antifungal drug. The test results are not encouraging at all. There are no white blood cells at all — 0 and blood and platelets are being transfused periodically.
The results of the genetic analysis were also a bit disappointing, as they weren't able to properly analyze the sample. Not a single cell capable of dividing was detected in the collected material, making it unclear whether the defective gene remains in Arseniy's body. Starting today, Arsyusha will begin receiving granocyte injections to at least stimulate her body, and perhaps this will help her overcome the crisis.
Because there are very few cells in the bone marrow, and even those that survived the block are practically non-viable, the doctors have decided to prepare Arseniy for an urgent transplant from another donor. The clinic is currently determining whether the donor is eligible for the stem cell transplant procedure. After that, the donor will be tested and prepared. During this time, we need to bring Arseniy back to his senses and find the money for the transplant itself. Unfortunately, the clinic refuses to perform the procedure on credit. The Ministry has not yet provided a letter or guarantee. The transplant bill is 111771 Euros. The estimated transplant date is — 20-25 December.
I don't know what words we, the parents, should speak to people to make them believe us and support us! I don't know how to talk to representatives of the Ministry of Health in our country! I hope for the compassion and understanding of kind people! Support our Arseniy! We are grateful to everyone! May God protect your families!"
05.03.2016
"We were discharged on Wednesday, now we are being monitored as outpatients, and 3 we need to have tests once a week. Arseniy is still weak and can't go outside, but he's in good spirits and we hope things will improve quickly. We are grateful for your help and support."
19.02.2016
"We've accumulated a lot of news and want to share it with you. Arseniy had an ultrasound and a puncture this week. The ultrasound showed that his liver has begun to recover, and his bilirubin levels are normal, meaning the treatment worked. His spleen is slightly enlarged but functioning normally. His gallbladder has thickened slightly. There's still a long road ahead. of recovery! The puncture was done on Wednesday, and the results are not yet available. Preliminary results show there are no blasts and the bone marrow is multicellular. We also received the cytomegalovirus test results today – the virus hasn't increased, but it hasn't decreased either. Treatment for this virus is lengthy, and we'll have to stay in the hospital for a while longer, in the hematology department. They're planning to transfer us there on Monday. The virus that has taken up residence in his genitourinary system is also showing no sign of going away. On Thursday, Arseniy received another IV of the antiviral medication (BK virus). It's been four days since Arseniy received parenteral nutrition. It's certainly very difficult for him now. He can't eat solid food yet, but he's trying very hard. His skin is slowly but surely recovering. We try to go for a walk down the hallway every day. Today, he was allowed to shower for the first time. We hope that everything bad that happened to us will also slowly but surely leave us forever! We're already longing to breathe a sigh of relief and feel like it's all behind us! Of course, it's heartwarming that in such difficult times, we encounter magical helpers along the way! We are eternally grateful to everyone for their support and prayers!"
29.01.2016
Thank you so much for your help! We are putting the fundraising on hold for now. Arseniy has had surgery. The boy is doing great! But he still has a long recovery ahead and he might need our help again.
11.01.2016
News from Arseniy's mother:
"Hello! I'd like to share some news about Armenia. We've been in the isolation ward since Sunday. On Monday, Arseniy had a puncture and a catheter broviak inserted. Yesterday, they started preparing him for chemotherapy, administering antibiotics and antiviral medication, as well as medications that protect the mucous membranes. This morning, they ordered his first chemotherapy. The Ministry of Health finally paid the transplant bill, and they'll issue the next bill for recovery later."
09.12.2015
"Arseniy's current condition: he's recovering from a severe block. He's starting to eat a little, wants a lot, but eats little. His tastes are changing daily. His blood counts are gradually rising, his fever only subsided a few days ago, and his headaches are still present, but less frequently. He had inflammation of the cerebral cortex. The doctors say there's no inflammation now. Today they performed a repeat spinal tap to check for inflammation, and the results are clear.
The donor won't be ready until 3 January, the transplant is scheduled for 10-12 January. We're still in correspondence with the Ministry of Health, but we've confirmed payment for the bone marrow transplant – the decision has been made. 04.12.
We're continuing to raise funds; rehabilitation is ahead. The bill will be in a few months. 2. Thank you all for your support and understanding!" The Ulyanov Family
06.11.2015
"We have some bad news: we've completed 4- a round of chemotherapy, and Arseniy's body isn't responding to it – bad cells are growing. We've decided, together with "Akhmatdet" to change the treatment strategy, meaning we'll use more severe chemotherapy. But the problem is, no one has ever performed such rounds in our country. We've decided to conduct this round in Poland. There they sent us a bill 37650 . We paid the bill today. We still need the same amount 132000 dollars, but we'll have to start from scratch again!" Ulyanov Family
19.09.2015
"Arseniy has completed his third round of chemotherapy. So far, his test results have allowed us to go home for a few days. We're in a positive mood. We're moving forward with hope and optimism. We believe that people will support our Arsyusha and help us during our family's most difficult time. Thank you to everyone who responded and didn't refuse our request for help!" Ulyanov Family
14.09.2015
Arseniy isn't feeling very well. He's lost his appetite and feels nauseous all the time. He doesn't want to talk to anyone, but that's normal during the treatments. His family tries to entertain him and lift his spirits.
