Hello!
Vanya Chernozub from the town of Novaya Kahovka is not even two years old.
His diagnosis: brain tumor (medulloblastoma) with metastases in bone marrow.
The little boy and his parents have already gone through a lot of pain and
suffering...
In October of 2008 he started vomiting. His head was bent to the left, and
Vanya began feeling weak and unsteady. The wrong diagnosis and
inappropriate treatment did not help...
In Kherson he was diagnosed with tumor of cerebellum.
In Kiev, where his mom took him, he finally had MRI scan that showed a huge
tumor. On February 17, 2009 Vanya was operated. During the surgery,
intracranial bleeding was found. The little boy was installed tracheostomy.
When the tumor was sent for histology testing, it was discovered that it was
malignant medulloepithelioma of cerebellum, grade IV.
The Cancer Institute in Kiev did not take Vanya for treatment.
The hospitals in Moscow declined too.
Fortunately, Helios Clinic in Berlin agreed to take Vanya.
On April 26, 2009 Vanya was taken by intensive care transport to Berlin.
The trip was difficult, but Vanya did great! He is very stoic, this boy,
and he tries hard to behave like a healthy kid. He tries to get up, and
wants to eat a lot. But he lacks swallowing reflex. He breathes by
himself, almost. Sometimes, his mom puts him on oxygen. He loves it when
his mom reads him stories. He smiles and is curious about the world around
him...
The treatment had started! This is Vanya's chance to live. The cost of
therapy in Berlin is 76,852 euros.
As of today, we raised about 43,000 euros, and we need about 33,000 euros
more. Without this money, Vanya's treatment could stop at any time. Please
help Vanya!
Update as of May 21, 2009.
Vanya is now getting his 2nd chemotherapy course. Unfortunately he has a bad form
of staphylococcosis which is resistant to antibiotics. But Vanya and his mother
are keeping their heads up. In between the chemotherapy courses Vanya is feeling
ok. After this current block he may have an Ommaya reservoir implanted so that
chemotherapy gets right to the CNS.
Update as of June 6, 2009.
After the second part of the 1st chemotherapy block Vanya had an Ommaya reservoir
implanted. The surgery went well and the same evening Vanya was allowed to go
back to his ward.
Vanya's father came to visit him for a month, Vanya recognized him at once and
wants to spend all the time in his lap! A while ago Vanya was even allowed to stay
at the dormitory for a few days because he felt well and his blood counts were normal.
Now Vanya is back in hospital, he is getting chemotherapy through the reservoir.
55,443 euros have been raised by now. 21,409 euros are still to be raised.
Update as of June 24, 2009.
Vanya started to get chemotherapy. 1 day of chemotherapy, 2 days of flushing.
Vanya and his parents have been staying at the dormitory for the last 3 days, and
everyone was very happy about it.
Vanya is feeling better. Yesterday he had an ENT doctor visit, and the doctor said
he was planning to teach Vanya to swallow soon. Vanya's mother Yulia says his arm
is doing a lot better, the boy has been attending training sessions
with a physical therapist.
Most importantly, an MRI scan is scheduled for next week. Yulia is very nervous.
The scan is to show if the 2 months' treatment course is yielding results.
Unbelievable: they have been in Germany for 2 months already! For volunteers
time has been flying, but probably not for Vanya and his parents. Every day
has been filled with the struggle for life far from home, side effects of
chemotherapy, life in a hospital ward and a tiny room in a dormitory in a
foreign country and the hope for positive treatment results.
And fear – that the money needed for this hope to come true can be over
any time and Vanya can be sent back home... Hope and fear can be felt in
every word of Vanya's mother Yulia.
Please don't leave Vanya alone! He has endured so much, but he can't do
without our help! June 30 is Vanya's second birthday. The best gift for
him would be his recovery, but another precious gift would be confidence
in the fact that the treatment will not have to be stopped due
to lack of money!
Anya, volunteer
Update as of July 5, 2009.
Vanya turned 2 on June 30. He had lots of guests coming to his dormitory room
for his birthday party. There were gifts, a cake and a candle! Thank you all
for being with our little boy! He looks so happy on his birthday pictures!
Vanya is also trying to eat on his own. He loves yogurts but a while ago
everything he put into his mouth came out through the tube in his throat.
Now he is beginning to swallow on his own! Also he is trying to speak
(but the words cannot be heard due to the tube) and walk on his own.
But there are bad news too. The MRI scan showed that metastases in his
back are contrasting more and the tumor in his head has grown a little.
The doctors are to have a consilium and reconsider the treatment tactics.
Vanya will most likely be getting radiation therapy.
Update as of August 18, 2009.
Upon consultations with several German clinics Vanya's doctor came to
the conclusion that the Ukrainian doctors most likely did not use a
contrasting substance when doing the MRI scan, that is why Ukrainian
and German scans should not be compared.
The decision was to continue with chemotherapy according to the
protocol and do another MRI scan after the third block (this coming
Saturday) to evaluate the dynamics of the disease. After that
radiation therapy is planned.
Vanya got a smaller tracheostoma and now he can already say
"mama" and "nu-nu-nu" (this is his way of
scolding someone) if he closes the tracheostoma with his finger.
He had complications after the chemotherapy (elevated temperature
and a stomachache) but now he is feeling fine. He plays, rides
his car, dances and feeds the ducks.
Anya, volunteer
Update as of August 28, 2009.
Yesterday we talked to the doctor about the MRI results and
further treatment.
The MRI scan showed that the brain tumor has not decreased in size after the
last chemotherapy block but it is less contrasting. It means that it is less
active. The metastasis in the spinal canal has decreased in size and is
less contrasting. Than means that the tumor is being susceptible to
the treatment!
That also means that the Ukrainian MRI scans were performed without the
contrast agent so they cannot be compared to the German one.
Yesterday Vanya got general anesthesia in order to get "marked":
the doctors were preparing the mask for radiation therapy and marked
the skin on his belly. Now the physicists need to calculate radiation
therapy parameters. Since Vanya is so little these calculations have
to be very precise (so that the other brain areas are not damaged and
the boy develops like he should) which will take a lot of time. If
calculation results are ready by next Thursday radiation therapy is
to start on Thursday. If they are not it is to start in a week on Monday.
This is going to be a difficult period because such side effects as
cephaledema, nausea, high fever and burns are very likely.
That's why Vanya is going to stay in hospital on weekdays and only go
home at the weekend provided he is feeling fine.
Vanya also visited a dentist, and tomorrow he is going to an eye doctor.
And finally: the multi-drug resistant staphylococcus the boy had at the
beginning of his treatment in Germany is not there any more!!! Some other
infections are found from time to time but that is more or less normal
given Vanya's weakened immunity system. We will also try to arrange for
speech therapist visits so that Vanya learns to swallow.
Vanya is feeling ok. I have already seen him after the general anesthesia.
He was very cheerful, riding his car around his ward and opening all doors,
expressed his discontent a couple of times (which is no wonder as he did
not eat anything until 4 p.m. due to the anesthesia), he played with
balls giving them to me and taking them back and illustrated everything
Yulia was telling me (as she was speaking of tongue massage he opened
his mouth and pointed to his tongue).
Vanya understands everything, does everything he is asked to and sends
air kisses when someone is leaving him. He is a very smart, active and
good little boy. He is simply a wonder of a child!
Anya, volunteer
Update as of October 6, 2009.
Vanya is done with chemotherapy and half way through with radiation
therapy. He has been doing rather well. Of course he is somewhat weak
and passive, but he only got complications due to infection once, and
those were overcome quickly, and thank God he does not have the side
effects the doctors warned us about.
By now some 70,000 euros have been raised. Again, the original sum
for chemotherapy was 76,000 euros, and now he is getting radiation
therapy. After that maintenance chemotherapy will be needed.
The clinic will issue a new invoice this week.
We need your help badly since the treatment can be stopped at
any moment! And going make home means death for Vanya...
Vanya is the only child of his mother whose parents died when
they were still young. He and her sister are her only relatives.
Vanya is a life loving child, now he is learning to swallow and
tries to walk, he loves his new toys and understands everything
that is being said to him.
The tumor reacted to chemotherapy, and today Vanya is not that weak
baby on ALV he used to be half a year ago when he spent a month at
the Donetsk intensive care unit without any chances to survive.
After the treatment was begun in Germany he literally came back to life.
Please help him finish the treatment course in Germany and come
back home with his mother being a healthy child!
Update as of October 10, 2009.
Vanya is done with the most part of radiation therapy, only 10
sessions are left. He is feeling ok although his blood counts are
unstable. Vanya's grandmother came to visit him for a short while.
He recognized her and was very happy to see her!
The hospital issued a new invoice.
The existing debt is 2,209.69 euros,
the upcoming treatment course (excluding possible complications) is
to cost 10,162.91 euros for the radiation therapy left and 10,583.61
euros for 6 chemotherapy blocks, so taking into account the money
that has already been raised but has not yet been transferred to
the clinic's bank account we need to raise another 15,000 euros.
However, these sums do not include ambulant treatment (when Vanya
is to come to hospital for examinations and treatment between
chemotherapy blocks) and complications (every additional day
in hospital during chemotherapy is going to cost 385.7 euros,
and low blood counts and complications due to infections are
practically unavoidable during chemotherapy).
So the actual sum needed is going to be higher but it is
impossible to forecast it at this moment. Little
Vanya is asking for your help!
Anya, volunteer
Update as of October 25, 2009.
The day before yesterday Vanya had his last radiation therapy
session. Vanya did well, he is feeling ok, only his skin is
exfoliating. He is trying to stand up and walk on his own
(see photo).
Now he has a 6 weeks' break, an MRI scan is scheduled for end of
November, and then he'll have 6 chemotherapy blocks 5 days long each.
Vanya's mother says thank you to all of you for your help and support.
Anya, volunteer
Update as of November 4, 2009.
Radiation therapy is over, and Vanya did very well. His blood counts are normal
after radiation therapy, and the doctors allowed Vanya to go back home for
a "vacation" so that he gains strength for the upcoming chemotherapy.
Vanya and his mother went home to Novaya Kakhovka for two weeks. It was
Vanya's first airplane flight: he did not sleep always wanting
to look around.
As soon as the volunteers met Yulia and Vanya at the airport and everyone
got into a car Vanya asked for food right away and fell asleep.
Yulia and Vanya were so happy to see their family and friends. Whatever
they say, home is the best place to be. Vanya is fine, he is recognizing
his things and toys!
They are to go back in 2 weeks, and November 25 is an MRI scan.
Anya, volunteer
Update as of December 21, 2009.
According to the MRI results Vanya has a full remission! Both the
metastasis and the tumor are no longer seen on the scans and are
not accumulating contrast either. Now Vanya is getting maintenance
therapy which is to last approximately 6 months.
Vanya has also had a course of antibiotics treatment because there
was an accumulation of E.coli bacteria in his tracheostoma and
Vanya's temperature was rising every now and then.
The speech therapist is visiting Vanya three times a week
training him to swallow so that the tracheostoma could be removed
as soon as possible. Vanya is feeling ok.
Anya, volunteer
Update as of January 13, 2010.
Vanya is now in the break in-between the 1st and 2nd chemotherapy
cycles. He uses this time for intensive classes with speech therapist
and we can see gradual improvement: Vanya is slowly starting to swallow
and can speak more words already.
In speech therapist's opinion, during Vanya's illness, his muscles
atrophied. One of the exercises for the muscles strengthening is this:
a piece of apple is wrapped in cloth and given to Vanya to bite on the
paralyzed side of his face.
Vanya's general condition is good, but sometimes his temperature rises
for some reason. The blood test results are relatively good, but his
CRP is increasing that is a sign of inflammatory
process in the body.
Vanya's doctors and his mom are monitoring Vanya's test results
and his condition.
One more piece of good news is that Gazprom Ukraine transferred 85,000
hryvnias to Vanya's grandmother's bank account (close to 7,000 euros).
We are very grateful to Masha for contacting the company with a request
for help to Vanya and negotiating the donation. Vanya's Christmas photos.
Anya, volunteer
Update as of January 24, 2010.
Vanya feels well. He now has ergotherapy in addition to speech
therapy, so that he can learn to crawl properly and then walk.
Vanya really enjoyed the first visit. He was so active that
the therapist was even more tired than Vanya by the end of it.
On January 25th Vanya will start the second cycle of maintenance therapy.
Anya, volunteer
Update as of January 30, 2010.
Vanya received the first part of the second cycle of maintenance therapy.
He will have an injection of Vincristine on February 2. Vanya feels well,
his test results are good and his hair is growing back.
The only problem is that tracheostomy has tested positive for an infection
again and he continues inhalations with antibiotic.
Vanya's temperature is somewhat unstable. We were disconcerted by the
news that apparently Vanya can hear much worse in his right ear than
in the left. The doctors believe it could be a consequence of prior
surgery to remove the tumor, which could have damaged the
auditory nerve.
Vanya is continuing classes with speech pathologist and
ergotherapist (see photos). It is hard to
believe now that in March 2009 at Neurosurgery Institute in Kiev,
Vanya was so weak that his hands were shaking, and in April 2009 he
was in intensive care unit in Kherson and doctors were giving him
no chances to live.
Today he is a curious lively little boy who ties hard to catch up
with kids his age and who makes his mother and doctors happy with
new achievements every day.
The ear, nose and throat specialist is planning to remove tracheostomy
after the 4th cycle of chemotherapy, while ergotherapist is certain
that Vanya will learn to walk.
Vanya's mom is asking everyone to pray for Vanya's full recovery and
is very grateful to everyone who is helping them.
The treatment requires 6,000 euros more to be completed.
Anya, volunteer
Update as of March 8, 2010.
I will start with the good news: MRI results as of March
4 confirmed remission!
Now to the bad news... Today Vanya was examined by an
otolaryngologist and ophthalmologist. The otolaryngologist told
us that Vanya's hearing on his left ear is 100%, but he cannot
hear anything with his right ear...
Once the main treatment is completed, the doctors will examine
Vanya's right ear and determine whether an implant would help
to restore hearing in it.
Vanya had to see ophthalmologist urgently, as in the morning
her woke up with an inflamed eye. The doctor said that he has
herpes infection in his eye and prescribed eye drops.
Vanya already had herpes in his other eye and he was left with
a scar that interferes with his vision and may have to be corrected
surgically. Just in case, on Friday the Ophthalmology Unit head with
examine Vanya as well. However, any serious therapy will be
offered only after the main treatment is completed.
Vanyusha is now at the clinic and he is administered the third
cycle of chemotherapy. His mom had calmed down after having a few
stressful days and she feels optimistic again. Vanya has been
through so much already that the issues with his ears and eyes
will certainly be taken care of.
Anya, volunteer
Update as of April 5, 2010.
A week ago, Vanya started having fever. His mom Yulia took
him to the clinic right away and it turned out that Vanya has
a serious multi-resistant infection in lungs. He now receives
antibiotics 4 times a day at the hospital.
Vanya feels better already; he plays and enjoys learning new things.
Recently I visited Vanya and Yulia and when I was leaving
Vanya showed me that everything is "super"
(see photo).
Anya, volunteer
Update as of June 20, 2010.
Vanyusha completed two more chemotherapy cycles - fourth and fifth.
There were complications, unfortunately. Because of unexpected
temperature rise, Vanya spent additional week at the hospital.
But in general, Vanya is tolerating chemotherapy well. Based on MRI
results as of May 12th, Vanya is still in remission! And one more
great piece of news: long and hard work with speech pathologist
brought results, and Vanya's tracheostomy was taken off.
He now eats and drinks like all the healthy kids. In the past are
feedings through a tube and Vanya's complaints that he can't munch
on bread or eat a candy. In the past is the constant worry that
infection can get inside Vanya's body through the tube. Vanya
lived with tracheostomy for 16 months and its removal is a
great joy for his mom!
Physical therapy was also successful: Vanya can now walk by himself.
Even though it is difficult and the steps are small and slow, Vanya
is catching up with the kids his age little by little. And very soon
he will turn 3 years old.
Vanya has one last chemotherapy cycle left. The issue with paying for
his treatment is still pressing. In May his mom received a bill
for the rest of chemotherapy for 25,000 euros. This amount does not
include the final examination, surgery to remove tracheostomy and Omaya
device from his brain, and rehabilitation.
Please help Vanya take one final step on his road to recovery!
Anya, volunteer
Update as of July 4, 2010.
On June 30th Vanechka turned 3! They celebrated, and had guests and a cake.
Vanya is a big boy now. He is a little man, very smart and his mother's joy.
The situation with finances is very bad. We are unable to afford not only
prepayment to the clinic, but also cannot pay off the debt for current
treatment which is increasing every day. Vanya's further treatment may
be interrupted due to lack of funds!
Anya, volunteer
Update as of July 17, 2010.
Vanya is not doing very well. Early in the week he got severe pneumonia.
His temperature climbed to 40C and for a long time it would not go down.
For the last few days it has not been lower than 38C. Vanya's urine also
tested positive for infection. He is now at the hospital where he receives
strong antibiotics. On July 13th he was planned to start the 6th
chemotherapy cycle, but it had to be postponed for now. Vanyusha does
not feel well. Please pray for his recovery.
Financially, it is simply a catastrophe. Clinic's accounting office told
us that Vanya owed 5,000 euros as of beginning of July. It is scary to
think how high his debt is now. In April Vanya also had complications in
his lungs and a week at the hospital "ate up" over 8,000 euros. Now
his pneumonia is even more aggressive. The debt will grow quite a bit.
Please help our little guy! He works so hard to
overcome all challenges and get well.
Marina, volunteer
Update as of August 7, 2010.
Vanya practically recovered after pneumonia and on August 3, with two-week
delay, he started the six, final cycle of maintenance therapy.
Once again he showed us how to be strong and fight for
your life and health.
However, our worries are not over yet. The accounting office at the clinic
billed Vanya's family 8,269 euros for pneumonia treatment. And there is still
debt for the previous chemotherapy cycle - 841 euros.
In total, the debt to Helios clinic is 9,111 euros as of August 4th.
This amount does not include the final chemotherapy cycle.
Please help this little boy!
Yulia's mom
Update as of August 20, 2010.
Our little hero completed the last chemotherapy cycle! Now the cancer
treatment is over (see photo).
However, due to complications, we are now in serious debt - close to
30,000 euros. Vanya also needs to check his eyes (one of his eyes may
need surgery) and ears (Vanya cannot hear with one ear and another one
needs to be checked). Vanya's Ommaya reservoir needs to be taken out and
he needs general checkup (cardio, etc), and MRI.
If we don't repay debt, these tests will not be done. Vanya's mom is in a
shock, and she does not know where to find so much money. Vanya's father is
not helping them, and his grandparents passed away long time ago. Vanya's
mom is all alone and she is always at the hospital with her son. Please
help Vanya and his mom!
Anya, volunteer
Update as of October 27, 2010.
In September, Vanya's catheter that was used to infuse maintenance
chemotherapy was taken out. Omaya reservoir is still in place, because
it does not impede Vanya's development and the doctors do not want to
subject him to another neurosurgery just yet.
Vanya's treating doctor said that his constant issues with lungs
(many infections, fluid accumulation and so on) need to be treated
with rehabilitative physical therapy, not medically. Right now Vanya
has a cold again, as his immune system was compromised after chemotherapy.
We managed to get an agreement from a German charity to pay for
3-week-long rehabilitation. It will start on November 2 and will
take place in a center that specializes in rehabilitation of children
who went through the hell of oncological treatments. They recommend a
4-week-long course, however, and we are hoping we can raise money
for the 4th week as well.
The clinic also billed Vanya's parents for the checkup after the
rehabilitation course (MRI, eye and ear exams and blood tests)
for 2,350 euros.
We will also need to pay for continuing classes with a speech
therapist and ergo-therapist, but we did not get a bill yet.
After the checkup in December, Vanya and his mom will return home
to Ukraine. However, the checkups are recommended every 3 months.
Vanya still needs help. Vanya's photo
Anya, volunteer
Update as of December 30, 2010.
We have very bad news. Vanya needs urgent help.
Two new lesions were found in his spine: one at the edge of the field
that was radiated, and another - in the field. The situation is
serious, and anti-relapse therapy needs to start immediately. However,
the clinic is refusing to start treatment without full prepayment.
Unfortunately, the clinic had a bad experience with other Ukrainian
families whose children were treated in Helios and were discharged
with large debts.
Vanya's was billed 43,207 euros
plus he also needs to pay 3,100 euros he owes to the clinic.
We are very sad about Vanya. Everyone hoped that he beat cancer
already. In November Vanya had a 3-week rehabilitation course in
Germany that was paid for by a German charity. It had to be
interrupted due to pneumonia, and he was taken back to Helios. While
he was treated for pneumonia, the time has come for control tests.
At first, they thought a metastasis was left over from previous
treatment and was not seen earlier (the clinic replaced their MRI
scanners by newer ones). Unfortunately, it turned out to be a relapse.
It is a terrifying word.
We cannot stop and get discouraged now. Please lets pray for Vanya
once again. He is such a fighter. He came out of real dangers. With
God's help, he will win again. But he needs our support.
The money is needed now. The amount is huge. The treatment needs to
start, but it will not happen until we pay the bill.
We are pleading for your help!
Anya, volunteer
Update as of January 23, 2011.
We raised the amount necessary for the anti-relapse therapy!
We even raised 6,000 euros more than necessary: the total is a
little over 49,000 euros. We are enormously grateful to all
Vanya's supporters, as well as several charities: Predanie,
Heart for the Children, AdVita, Advita Fund USA, AWD Children Help,
and Holger Hitsblekh fund, and their supporters.
On Monday, Vanya will be hospitalized and will start treatment.
As of now, Vanya does not need financial help.
Anya, volunteer
Update as of May 4, 2011.
Vanechka and his mom went to Pochaev for three days and planned
to start radiation therapy this week. Unfortunately, Vanya feels
worse with every day. He has headaches, vomiting, and fatigue.
Vanya does not walk much, gets tired easily and does not eat well.
An x-ray of lungs showed pneumonia in his right lung. Vanya also
had MRI of brain. In a very short time, the tumor has grown three
time its size and metastasized to brain meninges, getting close
to basilar artery. At any time, it could squeeze the artery
and cause a stroke.
Vanya was prescribed supporting therapy. Tomorrow or the day after,
Vanya's mom will meet a doctor from a hospice and next Monday or
Tuesday she and Vanya will move there.
Anya, volunteer
