Hello!
Our story is very sad, but I am sure it will have a happy ending.
My much-loved daughter is seriously sick. We learned about this on February 4.
This was a huge hit for our family, and it seemed the earth was moving under
our feet.
Diana was born on January 24, 1995. I was absolutely happy. I already had a
son, and then God gave me a daughter. She grew up responsive, kind and fun-loving
girl, and was very social. In our military town where everyone knows each other,
Diana is loved my children and adults alike. All her girlfriends are very upset
about her illness and they believe in her recovery.
Diana was diagnosed with acute lymphoblastic leukemia. She needs bone marrow
transplantation. Since we do not have a related donor in our family, we need
to search for the unrelated donor at the international registry. The search
costs 15,000 euros, and the delivery of transplant from the European collection
center to St. Petersburg costs another 2,500 euros.
My Diana really wants to live, be happy and bring joy to others. Every minute
of my life I plead God to not take her away from me. My daughter says that
she loves me every day, and I love her more than life and I will not be able
to continue living without her. In my dreams, I see her growing up and falling
in love for the first time…
Please respond to our request for help.
I plead you to help me save my Diana! I am certain that the world will be
saved by human kindness!
Update as of May 29, 2009.
Unfortunately, the preliminary search results showed that Diana does
not have matching donors at the international registry. Further treatment
options are under discussion.
Update as of November 11, 2009.
Since October, Diana has been on treatment at Regional Children's
Clinical hospital No.1 in Voronezh. Unfortunately, she was only able
to complete 4 rounds out of required 6 at Russian Oncology Center
in Moscow. The therapy was interrupted due to fungal infection,
candidiasis. Diana was receiving Vfend, but the doctors found it
possible to switch her to Fluconazole.
The MRI and x-ray tests discovered that Diana has osteoporosis in
her spine and knee joint that causes her a lot
of pain and suffering.
Diana is given painkillers and was prescribed Calcium.
In parallel, she is underging chemotherapy and takes Vesanoid.
She also has some issues with protein levels and takes Albumin.
Update as of November 18, 2009.
Diana's swelling in her legs is now gradually going away, but
unfortunately, her arms are starting to ache the same way!
The swelling occurs due to low protein counts.
Fortocartin washed out all the calcium and protein from Diana's
bones and provoked osteoporosis. I bought Calcium D3 by Nycomed
and will get Calcium made by Neways brought from Moscow (this
vitamin complex is very expensive).
We receive protein at the hospital, and sometimes I have to
buy it too. In general, we have to spend a lot of money on
medications. Diana will start Vesanoid on November 23rd
(the hospital ahs it in stock).
Diana, unfortunately, is not following her treatment protocol,
as she only was administered chemotherapy once, on October 28th.
She missed injection on November 4, November 11 and November 18
due to complications.
Every day something happens. As our doctors said, it is an easy
protocol, but not for Diana.
I am sending Diana's medical summaries from Russian Oncology
Center (page 1,
page 2,
page 3,
page 4).
. I know that Diana will get through this, will
live and make me happy!
Diana's mom
Update as of December 8, 2009.
Diana vitally needs at least 14 bottles of antifungal drug Cancidas.
Each bottle costs close to 20,000 rubles.
Please help Diana urgently!
Medical summary:
page 1,
page 2
Update as of December 11, 2009.
Cancidas for Diana was received in advance of payment, because
it was too dangerous to wait any longer. We are hoping for her
supporters' help to cover the bill.
After receiving the medications, Diana sent us a letter:
"I am so happy that you sent Cancidas for me! Thank you
very much for your responsiveness, kindness and empathy towards me!
On January 24, 2010 I will turn 15, and you gave me the most
important gift in my life! The medication you sent will extend
my life and give me hope for recovery! I really want to live
and I will fight hard for it! I will get well at any cost!
I am enormously thankful to Advita Fund and everyone else!"
Here is a letter from Elena Anatolievna, Diana's mom:
"Where can I find the words to express the depth of
mother's gratitude? God, thank you for sending help to my
daughter! More than anything, I want Diana to get well!
Every minute I pray to God that he does not take her from me!
I am enormously grateful to you for quick response to our
request and sending us such an expensive medication!
We can now continue treatment under the protocol.
It seems my heart is trying to jump out of my chest from
all the excitement and joy that there are so many kind
and responsive people who care for those in need!
I am deeply grateful to Advita fund and all the good people!"
Update as of December 17, 2009.
We are expressing our heartfelt gratitude to Baltic Industrial
Company for partial payment of bill for Cancidas for Diana.
Update as of January 25, 2010.
I've decided to write a little about Diana. Since December
29th she has been a day patient with doctor Natalia Yudina.
January 26th will be the last day of Cancidas injections.
Diana started feeling better, but she may still need Cancidas.
Since January 11th she has been undergoing a course of maintenance
therapy with Purinethol. From January 12th to January 25th she had
a course of Vesanoid.
Now we will probably try to take Diana's bone marrow to a lab in
Yekaterinburg for testing for residual disease and molecular-genetic
test for chromosomal abnormality. It is not yet clear whether the
tests will be free, and I will probably bring the samples myself.
As of today, Diana's leukocytes are 1000. She was planned to start
Methotrexate on January 27th, but it was postponed due to low
blood counts. Unfortunately, Diana cannot yet be treated as
optimally recommended.
Diana's mom
Update as of February 2, 2010.
Diana feels rather well, but still has low leukocytes and platelets.
After the consultation with Dr. A. S. Popa, Hemoblastosis unit head
of Russian Oncology Center, Diana's treating doctor, Dr. N. B. Yudina,
decided to continue therapy with Cancidas (medical summary
page 1,
page 2,
and conclusion of Dr. Popa).
Therefore, Diana needs 14 more bottles of Cancidas for the total
cost of 225,000 rubles.
Update as of February 11, 2010.
Cancidas was purchased and already delivered to Diana.
Diana and her mom wrote us a letter:
"I am endlessly grateful to all Advita Fund volunteers for once
again responding to our request for help and sending me Cancidas!
Again and again you are giving me hope for recovery and extending
my life! I feel stronger with your kindness, responsiveness and
empathy! I am fighting and will continue to fight for my life!
I am enormously thankful to Ivan Leonidovich and Baltijskaya
Company and all the good people!
Diana"
"Thank you, good people, for helping my dear Dianochka! Every minute
I thank God that she is with me! I love her more than life and my
life's sense is in her. My heart is overflowing with great joy
and gratitude to you. I know that Dianochka will recover and
live, and in the future she will be helping others too!
We are enormously thankful to everyone!
Elena Anatolievna"
Update as of March 27, 2010.
Diana and her mom traveled for a consultation to Germany and the
doctors there fully approved the treatment she is receiving.
In the next few days they expect a response from Yekaterinburg where
they sent the tissue samples for molecular-genetic analysis for residual
disease and chromosomal abnormalities.
Afterwards, further treatment strategy will be determined. Diana will
likely undergo a course of treatment with Dexamethasone
and radiation therapy.
Update as of April 21, 2010.
Diana is in complete remission in regards to her primary diagnosis
and the examination did not find any genetic defects! Unfortunately,
during Dexamethasone therapy Diana developed hip joint necrosis
and she cannot walk. Dexamethasone therapy had to be canceled.
Diana receives maintenance therapy with Purinethol and Methotrexate,
and soon she is planned to undergo radiation therapy. The fungal
lesions are not yet gone completely, although there was response
to Cancidas. Diana may need Cancidas therapy again soon.
Update as of May 20, 2010.
Diana received the full course of therapy with Cancidas.
We are endlessly grateful to Ivan Leonidovich for his help!
Based on Dr. Popa, Diana was prescribed Zometa to prevent bone loss.
Just 4 ampoules, once every 28 days. Zometa is a very strong medication
and very scary. It can cause serious complications. So Diana had to stay
at the hospital for the first few days. The first injection was on May 4.
To our great happiness and amazement, this time the hospital supplied
Diana with the medication. Each ampoule costs 16,000 - 18,000 rubles.
Diana drinks Purinethol daily and once a week she has an injection of
Methotrexate. Starting May 4, Diana will start hyperbaric oxygen
therapy (15 sessions).
On May 28th and June 2nd Diana will have exit tests for the 9th grade:
Russian and math. On June 3, she will have second injection of Zometa.
On June 4 she was an appointment for bone MRI.
Then I will probably take the images to Moscow for a consultation with
Prof. Karachunsky. We need to decide on further treatment for Diana,
as she is contraindicated hormonal therapy.
Diana's mom
Update as of May 21, 2010.
Natalia Borisovna, Diana's treating doctor, replaced Fluconazole with
Rumycoz to avoid possible resistance. After injection of Methotrexate,
Diana's leukocytes fell to 1.3, and platelets dropped to 110 from 150.
Starting today, Diana is taking Vesanoid to correct chromosomal mutations.
It will be taken for two weeks (2 capsules a day).
Diana's mom
Update as of July 27, 2010.
Two weeks ago, Diana completed radiation therapy in Moscow and she is now
recovering. She receives Zometa under a protocol, and the next MRI is
scheduled for September. We have a hard time getting Rumycoz, Vesanoid,
and even Methotrexate and Purinethol for free. We are trying to do
everything we can to get these medications for free, as we are supposed to.
Diana's mom
Update as of October 30, 2010.
Our news is not very good. My bones started aching even more, and not only
my legs, but also my arms. The hospital did not have the medication, so my
mom had to buy Zometa by herself.
Prof. Karachunsky took my images to Germany where he was recommended to
administer another cycle of Zometa, and if it does not help, then I would
need to undergo surgery in Germany.
Zometa is infused once a month, and this month I already received it.
On October 17th my bone marrow was collected. My mom took it the same
night to Moscow. Then it will be sent to Yekaterinburg for molecular-genetic
analysis. The results will be known in 2 weeks.
I am undergoing the same therapy: Purinethol liquid, weekly injections of
Methotrexate, and antifungal drugs. However, the strong medication Orungal
is expensive and we cannot afford it, so I drink Rumycoz, and when we can't
afford even that, I drink Fluconazole.
Diana
Update as of December 5, 2010.
I received test results from Yekaterinburg. Translocation 4-11 is not found:
this is great news! On November 23rd I received the second Zometa injection.
After Vesanoid, I had a seizure and was at the hospital for 10 days.
And then I was taking antibiotics.
I had a lumbar puncture and it was tested in our lab. Fortunately, blast cells
were not found.
My arms and legs still ache. My treating doctor signed me up for MRI of
skeleton at the Regional hospital for December 6th. They have a better machine.
The doctors will evaluate necrosis of my bones.
I am continuing the same medications and of course the antifungal drug.
I will let you know about MRI results. Thank you very much for remembering
me and caring about me.
Diana
Update as of January 18, 2011.
Diana has a cold, so the last cycle of chemotherapy with Vesanoid was postponed.
Afterwards, an injection of Zometa is planned. On March 5th Diana will undergo
MRI of skeleton. Based on the results, a decision will be made whether
orthopedic surgery is necessary.
Update as of June 3, 2011.
From June 25th to July 15th Diana and I will be at Oncology & Hematology
sanatorium in Chekhov, Moscow region. I am hoping that Diana will be able
to rest and clear her mind there. She finished the 10th grade with all
excellent grades!
Diana mainly stays at home due to leg pains. She really wants to get well
soon and never get sick. Once a month she continues getting Zometa
infusions, and she is planned for MRI of both legs at the end of July.
Diana's mom
Update as of August 6, 2011.
I am still doing the same: every month I get Zometa infusion
and take calcium supplements. I go for tests weekly.
Diana
Update as of August 15, 2011.
After numerous consultations, it was decided that Diana will travel
to University clinic in Tubingen, Germany for installation of prostheses
in Diana's both hip joints. There prostheses will be installed
simultaneously, which will shorten her recovery time.
The clinic estimated surgery
to cost 19,000 euros.
The date of the surgery will be determined once the bill is paid.
In addition, Diana and her mom will need help with buying air tickets,
lodging and food, as well as translator's services and a course
of rehabilitation, without which Diana will be unable
to come home.
Please help us with the fundraising!
Update as of September 18, 2011.
Diana's joint replacement is being postponed by a few weeks, as
she was found to have fluid in her knee and ankle joints. She cannot
travel for surgery in such a state. Diana will undergo therapy at home.
Meanwhile, she received a bill
for post-operative rehabilitation for 5,664 euros.
The rehabilitation is planned to take place
in Nuremberg.
We are enormously grateful to Ivan Leonidovich for donating 500,000
rubles for Diana's mom's bank account as partial payment
for treatment in Germany!
Update as of October 4, 2011.
We are so grateful to the "Life" charity
fund for the 500,000 roubles for Diana's treatment!
Update as of November 6, 2011.
Diana was tested at molecular biology lab in Yekaterinburg.
The result is good: (t4;11) translocation was not found.
Next week we plan to travel to Rheumatology Institute in
Moscow for verification of diagnosis and treatment of
knees and ankles. We are very grateful to everyone for their help!
Diana's mom
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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