Saving Oyuka

Dear Friends . . . and friends we haven't met yet,

Please, we need your help. On March 27th, 2018 our beautiful 10 year old niece, Oyuka, was diagnosed with a very large brain tumor.

All our family love Oyuka and would do anything for her but the cost of the surgery, treatments and critical care is simply overwhelming, that is why we have created this page.


How the Tumor was Found

In mid-February, 2018, Oyuka started to vomit once a week, or sometimes once in 2 weeks. Her family took her to a doctor to check out her stomach and her eyes, as she was also complaining of some dizzyness.
Nothing was discovered at that time.

On March 27th, 2018, after a very bumpy minibus ride (on extremely rough Mongolian roads), Oyuka started vomiting again and had weakness in her legs.
At this time she was taken for further tests and an MRI that showed a large mass in her brain.
It was diagnosed then as a Medullablastoma.
The original Mongolian medical report describes it as:
1. Infratentorial ependymoma in the 4th ventricle extruded through the
left lateral recess of 4th ventricle. DDx: Medulloblastoma.
2. Brainstem mass effect by the mass.

However that diagnosis is not confirmed, as no pathology has been conducted yet and it may be a different type of tumor.

Oyuka lives in Ulaanbaatar, Mongolia and, after performing the MRI, the doctors informed her parents about the large tumor and told them that Oyuka had only 2 years left to live.
They said that she would start to lose her sight, hearing, ability to talk and eventually her vital functions. The doctor also said that surgery on the large tumor was likely to shorten her life and could speed up the failure of those vital functions.

As soon as we heard that we knew we had to get Oyuka a second (3rd and 4th if necessary!) opinion and get her some treatment outside Mongolia!

We contacted many hospitals and doctors here in the US and sent them
Oyuka's medical reports and MRIs.
At that time 2 different doctors here in the US very generously took
the time to view her MRIs and give us their opinion.
They stated that Oyuka's tumor is 'treatable' and 'curable' and that she can go on to live a full life, with the help of a good surgeon.
A window of hope had opened in a dark place.
We resolved to do everything possible to save Oyuka so she can live out her beautiful life and return to happier times.


Oyuka during happier times!


What Happened Next

We spent days trying to get Oyuka accepted into a hospital either in Beijing or here in the US.
Unfortunately the timing was difficult as there was a large National holiday in China (the Qingming Holiday) and we were told it was not possible to admit Oyuka into a hospital there for some time.
Also, Oyuka was extremely sick and her condition seemed to be deteriorating.
We were advised that flying Oyuka on a commercial flight was an unacceptable risk and the US seemed now out of reach.
Oyuka was suffering from a cerebral edema (a build up of fluid in her skull) and the pressure in her head was giving her very distressing symptoms.

Those days were extremely difficult for Oyuka, and it was a very anxious time for all her family too. The situation felt hopeless.
Even as we felt that every moment was vital, days seemed to tick by, filled with desperate phone calls and emails, trying to get the medical treatment that Oyuka so urgently needed.
Oyuka was so sick that it looked as though she would be unable to travel even by train to Beijing.
We felt there was nowhere to turn.

One night (in Mongolia) Oyuka's symptoms became very serious and she was rushed to the emergency room at the hospital.
We were advised by a very big hearted and extremely helpful doctor in the US that Oyuka should be given a course of Dexamethasone.
This reduced her severe symptoms almost to zero. It did not affect the tumor but it reduced the edema and relieved some pressure from her brain.
It was a remarkable change in a short time and made Oyuka stable to travel.
It was also a huge relief and gave us a little window of time to get Oyuka somewhere she could receive the treatment she so critically needed!

Family and friends in Mongolia were very supportive and raised enough money for Oyuka, her mum, Ariunbileg, and dad, Khasha, to travel to Beijing in the hope that they could get Oyuka treated there.
With still no appointment and not knowing where they would go when they arrived, they set off on a train for Beijing.
There were no other options at that time.
There was some sense of hope in making a move in a positive direction though and Oyuka was actually excited to be visiting a new country.
As is the custom in Mongolia, before such an important journey, Oyuka's family visited the temple and Oyuka prayed quietly on her own.
Her prayers were private, known only to her.


Oyuka at the temple before the train trip to Beijing, China.


Oyuka's grandfather was going to travel with them, to translate, but he had a very bad stroke the night before they left and was rushed to intensive care in a Mongolian hospital.
We believe the stress of Oyuka's condition brought on the stroke.
Sadly he is completely paralyzed on his right side, is unable to talk and has other impaired functions.

After a 29 hour train journey Oyuka and her parents arrived in Beijing.
Just before they arrived we managed to get them an appointment at the New Century International Children's Hospital in Beijing and a very experienced neurosurgeon at the Beijing Children's Hospital agreed to care for Oyuka.
That was another huge relief!


What's Happening Now

Oyuka is currently being assessed at the Beijing Children's Hospital and the New Century International Children's Hospital in Beijing.
She has a bed at the Beijing Children's Hospital, where she will be having her surgery, and she is trying to stay cheerful.


Oyuka with her mum, Ariunbileg, at the Beijing Children's Hospital where Oyuka will have her surgery.


The neurosurgeon caring for her has had another set of MRIs done on her head and also a spinal MRI, to see if the cancer has spread to her spine.


Oyuka waiting for her MRI in Beijing.


We should get the MRI results today or tomorrow. We are really praying for a good result on the spinal MRI.
Oyuka also had a CT Scan (CAT Scan) today.
We are hoping that Oyuka will be scheduled for surgery this week.
Oyuka has also had blood tests and other assessments in preparation for the surgery to remove the tumor.


Oyuka having a blood test in Beijing.


Treatment Costs

The reason we are reaching out and asking for help with this GoFundMe page is because the medical expenses for Oyuka's assessment, surgery and post surgical care are more than the family can afford, or can raise in the time we have.
Oyuka has a chance at a full life but will not survive without the critical care she so urgently needs and all the expenses have to be paid upfront to the care providers before the treatments.

As well as our wonderful family and friends in Mongolia, some dear friends here in the US have been very generous with their huge financial and moral support before we started this GoFundMe page.
Thank you Anja and Helena!!
A big thank you also to Nara and Munguunuu!

This may already be enough to cover the surgery but beyond that it is not clear exactly what the costs will be, as until the surgery has been performed and pathology done on the tumor, we do not know what care plan will be necessary moving forward for Oyuka.
Also the results of the spinal MRI will give us a better understanding of the scope of the disease and the treatments needed.

There will need to be another post surgery MRI, within 24 hours of the surgery, to see how much tumor is left and what further treatment is needed. Also the pathology tests will need to be done to determine the exact type of tumor.
Oyuka may need targeted radiation and or chemotherapy and we still may need to bring her to the US for further treatment, when she is fit to travel.

As soon as we have a better idea of what the surgery and treatments will cost we will post an update, thank you.

What we do know is that every dollar we can raise will go towards the surgery and other medical and travel expenses for Oyuka and her mum and dad.



How You Can Help Save Oyuka!

Please help us to save Oyuka in any way you can.

If you can help with a donation thank you so very much. We understand that everybody works extremely hard for each penny they earn and we are grateful for whatever you can give, thank you.
It sounds cliché, but truly every little bit does help, thank you!

If you are unable to help financially then please share this page with your circle of friends or colleagues, as somebody you send this page to may resonate with Oyuka's situation and be in a position to be able to help.
You can also share the link to your Facebook Timeline and other social media ways that we may not even know!
Please, feel free to be creative! You can help to save Oyuka in this way too, thank you!

Also, whatever your background, or beliefs, please hold Oyuka in your thoughts for a moment, and visualize her as healthy, whole and healed, thank you. We strongly believe that positive intention, prayer and visualization really can work wonders, thank you!

If you have any questions about anything please feel free to ask and we will try and reply as soon as we can, thank you!


Thank You!!!

Thank you for taking the time to read this and for caring.

There is a quote, often attributed to William Yeats, that goes, "There are no strangers here; Only friends you haven't yet met."
Whoever said it, it is a beautiful sentiment and sums up what we have experienced since finding out about Oyuka's tumor. We have reached out for help and instead of finding strangers we have connected with people offering support, advice, real help and love: in a nutshell - friendship.

When we explained to Oyuka how much some of the doctors and staff of the hospitals, our friends and people who work for various charities had already done to help her she was really touched. Hearing that people in another country, who have never met her, care about her and are trying to help her was a little overwhelming to her. It has been for us too.

We understand that giving to help a child that you have never met is really a form of the purest love and we thank you with all our hearts for that, thank you!

Warmest wishes,

Anna (Ariuntuya) and Mike Brown - Oyuka's Aunt and Uncle.