Another Lera's photo

Lera suffers from neuroblastoma of left adrenal gland. On September 11, 2008, on her birthday, Lerochka started her first chemotherapy cycle. Then she had five more cycles, and a difficult abdominal surgery. Then another year of maintenance therapy… Lerochka and I counted days: when can we start forgetting about infusions, syringes, needles and shots… But it did not happen. In March 2010 Lera started having stomachaches and we knew that something is wrong… On March 9th we were hospitalized and bad news started coming one after another.
Relapse in the bed of the original tumor, metastases in all lymph nodes in chest and mediastinum, metastasis in parietal bone and spread to bone marrow… These words felt like a rain of fire… I was in so much pain and fear. I did not know how to explain to Lera why we had to be in the hospital again. I tried to take her to several clinics and their refusals sounded like a verdict… "Survival of 10%, and that's a stretch" – said pediatric unit head in Balashikha Regional hospital, but she took Lera in. She completed five cycles of harshest chemotherapy, and bone marrow transplantation was required next. In Moscow, Lera was refused admission, and this is how we came to R. Gorbacheva Pediatric Hematology & Transplantology Institute.
On August 16th Lera underwent transplantation. For a month now, she has been staying inside a hospital room. She cannot leave due to low blood counts. Lera constantly needs platelet transfusion, so we really need help from blood donors.
On September 11th Lera turned 5.
Lera's father does not help us with anything, and I have not had any income for the last two years, except for disability pension and state payments for disabled child (a little over 5,000 rubles). We have no friends or relatives in St. Petersburg and we have to rent an apartment. Thanks to charity that supports patients in Balashikha hospital we were able to come here, but we are running out of money, and no one knows how much longer we will have to stay in St. Petersburg. Soon Lera will need to go for PET scan, and we need to pay for it. She will also need another surgery. Of her 5 years of life, Lerochka has been in treatment for two of them. When I ask her what she wants for her birthday, she says: To get well.

Elena Alekseeva, Lera's mom

Update as of September 29, 2010. Lera underwent a chemotherapy course in N.N. Petrov Research Institute for Oncology and has been released home. She went to her home town Elektrostal. Lera will be operated on to remove the remains of the tumor. It is now being decided where the surgery is going to take place - in St. Petersburg or the Russian Children's Clinical Hospital in Moscow.

Update as of December 23, 2010. Lera is undergoing treatment in Singapore. The news about Lera is available at Happy Children fund or Seventh Petal fund which are currently raising funds for Lera.

Update as of June 21, 2011. Lera had a second relapse of neuroblastoma. She is undergoing chemotherapy under Irinotecan+Temodal protocol and we hope that it will be effective and improves her condition.
Lera needs to undergo immunotherapy with antibodies. This treatment for neuroblastoma in relapse was pioneered in the US and is now used in UK, US and Germany, where children with the same diagnosis as Lera are treated. This therapy was recommended by specialists from Singapore and Israel, where Lera was evaluated. This therapy is not available in Russia. The University hospital in Greifswald is ready to accept Lera for treatment (IL2+antibody protocol) as soon as we pay the bill.
We have been raising money for several months now with help of several websites. We get help from Happy Children fund in Electrostal, but cannot raise the amount we need. While the fundraising was underway, Lera started feeling worse. We went to see Prof. Zheludkova in Moscow and she recommended therapy with Irinotecan and Temodal at Oncology Regional hospital in Balashikha. The goal of this therapy is to support Lera and give her a temporary relief so that we can raise money for immunotherapy with antibodies.
Unfortunately, the hospital does not have Temodal and I have to buy it myself.

Invoice from Greifswald clinic

New Lera's photos: 1, 2

Lera's mom

Update as of June 28, 2011. Lera and myself now go to the Balashikha hospital every single day for chemotherapy. Lera refuses to stay in hospital overnight, plus at home I can cook whatever she wants for her or take her for a walk, and even the walls help at home, so we have to go to hospital in the morning and come back quite late in the evening.
Many people write and call me with words of support. I would like to say a special thank you to Dina Gibson, Marina Fedorova, Evgeniya Shebarshova.
Lera's mom

Update as of July 22, 2011. As of today, we raised 1,400,000 rubles and 22,000 euros.
We would like to thank our supporter who transferred a large donation for Lera's treatment, Electrostal residents for their support with fundraising, and Diana Gibson for her help with solving many of our daily problems and raising the money. We are grateful to everyone who is opening Lera's topics at the forums, distributing information about her and helping her get well!
The German doctor is very concerned about Lera and he is now asking us to request a visa appointment at the embassy so that he could call and speed up visa process. We have not paid off the cost estimate yet. The first 60,000 euros have to be transferred before the therapy starts.
Lera and I are trying to fly to Germany before the next Friday. If we don't leave by then, we will have to stay for another chemotherapy cycle.
Thank you!
Lera's mom

Update as of August 12, 2011. Lera and I are in the clinic. She had her first tests yesterday and today the doctors reviewed results and decided to start chemotherapy according to RIST regimen. It will start on August 15th.
After the fist cycle (8 weeks), we will have repeat tests and then antibody therapy will be discussed.
Since Lera will receive chemotherapy, her bill will be increased by the cost of this therapy at the clinic. The total amount will depend on the number of cycles required.
I am really hopeful for your help.
Lera's mom

Update as of August 24, 2011. We have lots of good news. First, Lera's bone marrow is cancer free. Second, MIBG study showed that she has much less active lesions than we saw in Moscow before irinotecan+temodal chemotherapy. There is about half left.
There are still many lesions in Lera's legs, a couple in her arms, in her sacrum - and that's it. Lymph nodes, skull bones and ribs do not currently have active neuroblastoma cells.
Professor has his doubts about the progress that I expect, but he did not see yet Lera's response to chemotherapy, and based on my experience I believe that 8 weeks of RIST chemotherapy will be enough to eliminate all active lesions, and then Lera could start antibodies.
I also asked the professor to compile the bill for chemotherapy as soon as possible, as we will need several months to raise 80,000 euros. He responded that we can bill you for all the RIST cycles, but it will not be right, as this is a big amount, and we could ask for too much money, while it may turn out that we do not need this much. We need to wait until we can evaluate Lera's response to RIST and then we can calculate more accurately. Eight weeks of RIST will cost 20,000 - 25,000 euros, depending on the number of blood transfusions that Lera will need, pain relief, antibiotics, and medications to treat side effects of chemotherapy.
Lera's blood counts are low, but she is doing OK - she feels well and is in a good behavior. She did not get transfusion this time.
We live in an apartment at the same guest house where Katya and Alina Larionova live.
We spend practically the whole day at the clinic when Lera is receiving IVs, and when she takes pills she does not have to go to the hospital every day. We only need to come for tests 3 times a week.
And one more piece of good news: German charity Heart for the Children agreed to donate 10,000 euros for Lera's treatment. Thank you very much!
Lera's mom

Update as of October 22, 2011. Lerochka underwent tests on October 11-14. She had MRI, MIBG and bone marrow biopsy. Based on test results, part of the lesions is gone and the others decreased in size. The doctors have created a treatment plan.
Lera needs to complete RIST chemotherapy, and then bone marrow transplantation followed by antibody therapy. There is no new treatment bill yet, as it will take some time. It will undoubtedly be higher, and the fear of not being able to come up with the amount overshadows all our joy from the good results.
Lerochka feels much better.
Lera's mom

Update as of November 11, 2011. Since November 18th Lera has been receiving chemotherapy. She was taking pills every day and was going to the hospital for IV infusions for several weeks. All was going well and blood tests stayed normal. My little sunshine was tolerating it well. As other kids on chemotherapy she was nauseous and did not eat much, but overall was doing pretty well.
But on November 2nd we ended up in the hospital in a serious condition. Lera was very weakened by continuing chemotherapy and her body was tired. That day for some reason she got dehydrated severely. Although the next day we were discharged already, her kidneys suffered.
Prof. Lode canceled chemotherapy for some time and said Lera's body needs to recover after this shock.
Several days later Lera had blood tests and the professor was not too happy with the results. He decided that Lera cannot be without any treatment, especially since so much has been achieved already and it does not make sense to lose that, but chemotherapy is not possible now due to bad liver and kidney counts.
The professor decided to start immunotherapy with antibodies, and it will start on November 14th.
Immunotherapy is much different from chemotherapy, as it forces the body to fight disease by enhancing immunity and targeting it to cancer cells.
The new therapy also not easy to tolerate, even very difficult at times, but we are glad that it is not chemo, and it means Lera's body will have a chance to recover and detoxify. After three cycles of immunotherapy, Lera will have tests and then the professor will decide whether it should be continued or chemotherapy restarted followed by bone marrow transplant.
While Lera had no chemotherapy for a week, she gained 1.5 kg and grew 0.5 cm. She got her appetite and happy mood back. She now cannot wait to start new therapy. Poor girl does not know yet what it means: that she will get shots in her leg, and the injection will leave painful bumps, and some kids are in so much pain on IVs that even morphine does not help. Her condition will be like that of someone with a bad case of flu. But all of this is peanuts compared to what she had already endured in 3 years of treatment. And most importantly, we are on the right path to recovery.
Lera's mom

Update as of December 9, 2011. I finally found the time and energy to write - Lera and I are at home. After a cycle of antibodies, her vision is almost gone, as all of her muscles could not function well, and the eye muscles take time to recover.
Now in order. Lera's condition was terrible. When we boarded a plane she was like a doll - could not walk, talk, or eat - it was horrifying. I was shocked to see her like that, but the professor assured me that everything is fine and we flew home.
At home, Lerochka started getting back to normal. Her first steps were very difficult - I could barely get her off the bed, and then it started getting better. Now she can already walk to the store by herself.
Her appetite is getting better also. Our whole family participates in the feeding. At first, our dances with plates would only get her to open her mouth slightly. Now it is much easier to feed her. She no longer drops the spoon and eats by herself. I only have to replace the plates with food - the more varied is the menu, the better she eats, even if in small portions.
This cycle was very difficult for Lera, and I am very glad that I came home right away afterwards. My whole family is helping me here - my mom, my grandmother, and even my cousin comes (she has 5 children and as such she is a very experienced mom). Lera is now in a great mood and she feels feisty and wants to get well even more than before.
Lera lost a lot of weight and looks like a skeleton, and her eyes can barely see. Everything else is fine. She is taking pills and continuing treatment. Lera is also regaining her weight. On December 18th we will fly back to the clinic, and the following day will start injections again.
Prior to the antibody therapy Lera had a puncture and the material was sent to 3 labs - the one at the clinic, to Cologne and Vienna. The response from Vienna came recently - they found two neuroblastoma cells. They are in bone marrow, and according to the professor, they could be either a sign of a progression (then we strated antibody therapy just in time), or maybe these cells existed in small quantities before and weren't previously caught, and only now were finally seen. The number of cells is too small to have a clear answer.
Photos from home: 1, 2.
Lera's mom

Update as of December 18, 2011. We are back in Germany. Tomorrow a new course of antibody therapy begins. The first injection in the leg is tomorrow.
While we were home Lera became her old self again. I cannot say she has fully recovered, her weight is still lower than in used to be and her eyes are the same, but most importantly, she's ready to struggle again. In many ways thanks to the support of all her grandmothers and grandfathers and cousins. It was the children who made her get up, come to herself and abandon that "protect yourself from the whole word" attitude.
The only bad thing during our holidays were the nosebleeds that happened a couple of times. The last time was right before our flight back. I was so worried about the possible nosebleeds on the plane because of the pressure drops, but all went well. Lera's blood counts were getting better and better all through our "holidays" until they were close to what a healthy child would have. Her veins are not good so it's not easy to get a blood sample, but our local laboratories don't work with catheters, no idea what they are afraid of. They prefer the old method - a thick needle and a syringe. With Lera's veins they can hardly ever take her blood with a thick needle but once a week is ok to endure, plus there's this great invention called the Emla plaster, which eliminates all the discomfort.
The nosebleeds were mostly Lera's fault, because the nose is not the right place for fingers, but also the drugs she's taking now (today is the last day) played their role - the blood vessels in her nose became so thin and weak.
I recomposed myself too. I was in the state of a shock, not knowing what to do and how to bring Lera back to life as we were leaving Germany. I don't know what surprises the next course has in store for us but I do hope that all of them will be pleasant :)
Lera is mentally ready for the next course, and when we were leaving home she told everyone to expect her in 3 weeks. I promised to think about it. It makes sense to fly back and forth if it does her good, but her condition should be good enough for flying.
Overall, we have recovered and it's now back to fighting. Taking one course at a time, and with each one the disease is retreating.
Lera's mother

Update as of January 1, 2012. Yesterday, just before the New Year, Lera and I were discharged and allowed to finish chemo with a pump at home. Lerochka feels much better than during the first cycle, although this is not an easy therapy by any means. This time, fortunately, we managed without getting into ICU. Lerochka is very sad that she could not celebrate the New Year at home with our family.
After she is off the pump, we plan to fly to Russia again. Prof. Lode told us when we just returned that the trip was good for her. Every morning the doctors were telling her that she will go home soon and it was calming her down when she was in pain and when allergy would bring waves of unstoppable cough and itchiness all over her body. The doctors were surprised when I said that we will not fly with a pump. They don't know that if something goes wrong we will not be accepted anywhere with it, and our city's children's hospital will not be able to deal with it.
So following Professor's advice, we plan to go to Russia on January 6th and return to Germany for the next cycle on January 23rd. I will be very grateful for help with paying for the air tickets.
Lera's mother

Update as of February 9, 2012. Unfortunately, antibodies stopped containing tumor growth and new lesions were found. Lera will undergo a cycle of chemotherapy in Germany. Further treatment will be discussed.

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