Dear friends! I ask for your help! We need your support to save our Fedya,
our youngest boy. Fedya is only three and a half years old, he is a late
child (his older brothers are already 21 and 18),
and is also our favorite.
Fedya was born with congenital anomaly of urogenital system and in his
three years has had five operations to correct that. The last one was
in November 2010. Everything went well and we breathed a sigh of
relief thinking that the worst was finally behind us... But on March 6, 2011,
after ultrasound kidney investigation, the doctors established a
terrifying diagnosis: bilateral kidney tumor (Wilms' tumor), stage IV,
with metastases in lungs.
Horror, shock... Stage IV! It was so advanced even though we had
spent so much time in hospitals and had so many tests. It turned out
that with such congenital anomaly, Fedya should have had ultrasound
of his kidneys every three months, as he was in a group of patients
with high risk of developing tumor from birth. Unfortunately, we
eventually learned about it from the oncologist, and not from our
pediatrician or a surgeon.
Currently we are treated in City Hospital #31. Fedya has had twelve
chemotherapy cycles. Fortunately, the tumor has shrank to a quarter
of its size, and metastases have also decreased. Then, according to
the treatment protocol, an surgery should be performed to remove
affected kidney, followed by more chemotherapy and (or) radiation
therapy. This is what doctors do when a tumor is on one of the kidneys,
and in 95% cases it is a success. Fedya has a bilateral tumor and
both kidneys cannot be removed... And we have only 60% - this is
ruthless statistics, but we have to make it to the 60%!
Now we are discussing Fedya's situation with the clinical
researcher for the protocol. The question is how to save a part of
the least affected kidney and maybe even operate on both kidneys.
But in any case it will be a complex organ-preserving surgery that
cannot be performed in Russia. We have great surgeons but they do
not have necessary equipment.
The preliminary amount we need is 10-20,000 euros. That should
cover two operations and chemotherapy in-between. If Fedya feels
well enough we could return to Saint Petersburg between the surgeries
and have chemotherapy done under a federal quota, for free. But
if Fedya is not allowed to travel, we will have to have
chemotherapy abroad.
That is why the amount of money that we have to raise is very uncertain,
and we only know the approximate amount. We are a large family, and
although both my husband and I work, we do not have any savings.
Like most other citizens we did not save for tomorrow... We will
sell everything we have, our friends will help us, but we still
will not raise so much money by ourselves. That is why we ask for
help from those who can feel our pain.
Our Fedya is very patient during all medical procedures. He readily
goes to the procedure unit, and enjoys talking to the nurses while
they take blood samples or put in an IV. He never cries and calms down
those who do, undergoes MRI without anesthesia and then tells us about
"scary sounds", and tolerates all the side effects of
chemotherapy stoically. I am very proud of my little son!
Still, this is all so unnatural and frightening. Every evening when
Fedya goes to bed he asks "Will I recover tomorrow?"
I say: "You certainly will, please wait a bit longer!"
Please help us!
Update as of June 4, 2011.
We received a letter from clinical research investigator,
professor Ian Godzinsky from Wroclaw, a European surgeon and an
expert with Wilms' tumor. He is ready to operate Fedya in his
clinic in Wroclaw, Poland. The plan is to perform first surgery,
followed by a cycle of chemotherapy in Saint Petersburg or
in Wroclaw, depending on Fedya's condition, and then the
second surgery on Fedya's other kidney in Wroclaw.
The first surgery will cost about 4000 euros, but the
final cost of hospital stay, examination and other
expenses is not yet calculated.
Update as of June 25, 2011.
Yesterday Fedya was done with another chemotherapy course.
The boy is feeling fine. Today he took a walk in the park where
he got to feed the ducks. On Monday he is having blood counts done,
and on Tuesday his medical record will be ready.
The final cost of the surgery has not been calculated yet. At present
the first stage has been paid, which is 4,029 euros. It has been
decided that the chemotherapy course between the surgeries will
be administered in Wroclaw. Consequently, the total cost of the
treatment is most probably going to be 10-15 thousand euros.
On June 24 the visa application was submitted. If everything goes
well Fedya's mother will buy plane tickets on June 30. There is
no direct flight to Wroclaw so they will
have to fly via Warsaw or Munich.
Update as of July 10, 2011.
The surgery on Fedya's kidney went as planned. As soon as he recovers,
his other kidney will be operated. Fedya feels OK.
Update as of July 20, 2011.
Fedya underwent second surgery. It went well and Fedya is now recovering.
Update as of July 27, 2011.
Fedya and his mom returned from a clinic in Wroclaw where he had
surgery on both kidneys.
Both surgeries went well and the doctors saved 70% of one kidney
and 30% of another. The boy will now continue chemotherapy in
St. Petersburg. Fedya feels well.
Fedya's mom and AdVita fund are sincerely grateful to all
Fedya's supporters who made his trip possible, as well as Prof.
Yan Godzinsky and clinic personnel for the incredible attention
and care that Fedya received during treatment.
Update as of August 10, 2011.
Fedya feels relatively well. After the last cycle of chemotherapy,
his doctors allowed him to go home to rest for several days.
Update as of August 31, 2011.
After returning from Poland, Fedya underwent five chemotherapy
cycles and he tolerated them well. He lost a lot of weight, but
his appetite is returning gradually and he started
gaining some back.
Fedya is now receiving weekly Vincristine infusions on Thursdays
and until Monday we are allowed to go home, which makes Fedya
very happy. During chemotherapy he developed neuropathy of both
of his legs, and he was referred for physical therapy and massage.
Fedya's mom
Update as of September 22, 2011.
Last Friday Fedya was discharged for three weeks. Unfortunately the
next day he was discharged he got a fever and even though Fedya
protested he had to go back to hospital for pneumonia treatment. Now
Fedya is on antibiotics and his condition is getting better: the
temperature is back to normal, and follow-up X-rays showed that the
number of infiltrates in his lungs is going down.
Fedya has a good appetite and has put on weight. He is walking
better too - his mother believes that is thanks to the pink bicycle,
a gift from one of the donators from the St. Petersburg parents'
forum.
Fedya's mother asked us to give special thanks to that woman!
Fedya is riding his bike around the unit almost never getting
off his "iron horse", and that's great
exercise for his legs.
Another chemotherapy course is begins soon.
Update as of November 26, 2011.
Since Sunday Fedya has been at the hospital again where he is treated for
pneumonia. He had fever and strong cough, but now after taking antibiotics,
his temperature is almost normal. Early next week he is planned to have MRI
of lungs, and on Thursday he will start chemotherapy. Fedya is very
tired of treatment, and is not in the best mood.
Update as of December 25, 2011.
Fedya feels well. His pneumonia was taken under control. On December 19th he
enjoyed participating at the holiday celebration at the hospital. Chemotherapy
is continuing according to the protocol.
Update as of January 11, 2012.
Fedya was urgently hospitalized with stomachaches. The doctors were
concerned about possible relapse, but it was not confirmed.
Fedya was urgently hospitalized at Children's hospital No.2 and operated.
He had intestinal bleeding at the post-surgical scars and intestinal
paralysis as complication after Vincristine therapy. Fedya is currently at ICU.
He had feeding tube and colostomy installed. During surgery, Fedya had
severe blood loss and he is receiving blood transfusions and blood components.
Due to intestinal bleeding, Fedya needs NovoSeven medication.
He is in a critical condition.
Update as of January 15, 2012.
Fedya is on a ventilator and receives all necessary treatment, but is still in
a critical condition. Unfortunately, he developed bedsores. As his blood counts
are more stable, the doctors allowed turning him over every two hours to heal
existing bedsores and prevent appearance of new ones.
Update as of February 2, 2012.
Fedya's condition is very slowly improving. He is now receiving water
and special nutrition that is digested in an unaffected part of
intestine and drains via colostomy. The doctors are hoping to take
Fedya off the ventilator soon. At the post-surgical wound Fedya
developed a fistula through which necrotic tissue fragments are
passing, and the changes of bandages are currently very painful.
Update as of February 6, 2012.
The doctors decided to leave Fedya on ALV since the boy is too weak
to breathe on his own.
