The little warrior from Mongolia

Nomuun was six months old when her parents, Huska and Dudaana noticed that something was not quite right with her. She could not sit unsupported or crawl like her cousin of the same age. They also noticed that half her forehead and face was cold and sweaty while the other half was warm! Apart from that, Nomuun is a beautiful, adorable, cheerful girl with a ready smile for everyone.

The doctors in Mongolia could not explain her symptoms and condition, so they advised the parents to bring her to Beijing for further assessment. The 3 months spent in Beijing going from one hospital to another, did not come up with any positive diagnosis, due in part to communication barrier and because of her young age, the doctors down-played it to developmental problems from lack of vitamins!

Back in Mongolia, they religiously followed the doctors' advice of giving her massages and the multi- vitamins prescribed. An observant therapist noticed that Nomuun would cry with pain each time she was placed lying on her stomach, so a spine and chest x-ray were done to exclude bone tuberculosis. It was only an MRI that finally gave a clearer picture to the problem. A big tumor was found on her chest area, which appeared to wrap round her spinal cord! Her doctor immediately advised treatment overseas, and Beijing was out of the question. 

Nomuun at 11 months old

That was in October 2007, when I first met Nomuun and her parents. They had brought her to Bangkok to seek treatment in the hospital where I was working. By then, Nomuun was 10 months old.  After a thorough examination, the Pediatric  Neurologist diagnosed that Nomuun had Nueroblastoma, a form of cancer which had developed in the nerve tissue of her chest and pressing on her spinal cord which explained her paralysis from waist down! 

Shocked and confused, Huska and Dudaana braced themselves for long term treatment of their baby and the uncertain prognosis. There were so many things to consider: their jobs back home in Ulaanbator, their six-year old elder daughter's care and schooling there, their finances, the cost of the medical treatment, their temporary abode in Bangkok etc...etc...

But far from being overwhelmed by the enormity of the problem, they took one step at a time and decided to go along with the treatment plan that the team of Specialists looking after Nomuun had lined up for her. The tumor had to be removed; but because of its massive size, the doctors decided to go the conservative way - that chemotherapy should be the first line of treatment to try and shrink it to a size where it is operable and without too much risk to her small body.  

Nomuun in her early days of treatment

Nomuun went through a total of 17 cycles of chemotherapy over a period of 15 months. Her hair did not have time to grow before another course of the toxic drugs made her bald again! It was heart breaking to hear her cries each time a nurse had to prick her hand with a needle to either draw blood for investigations or to set up an intravenous drip for the chemotherapy treatment. But no sooner had the needle been drawn and the pain gone, and with comforting words to console her, Nomuun would be smiling again, forgiving the nurse, her eyes and cheeks still wet with tears! 

Early days of physiotherapy

Yes, through it all, Nomuun went through her infirmity like a little warrior. We learnt a lot from her those days, that despite the pain, the nausea, the vomiting, the loss of appetite, there is always a new day to look forward to, with sunshine, family and friends to share laughter with; that rainbows will show its beauty even after a thunderstorm! She became the love of all the nurses who looked after her, including her doctors, the cleaning ladies and the pantry maids who brought food in each day. She captivated everyone with her smiles, her charm, her incomprehensible gurgling Mongolian words that she learned from her mother. There were good times too when the nurses celebrated her first birthday in December 2007 (and subsequently her 2nd birthday as well the following year). It was such a joy for us to see Nomuun happy, delighting in the fun and laughter with the people who cared for her and who also brought lots of presents and cakes for the occasion. 

In February 2009 the tumor was deemed small enough to attempt surgery. A team of doctors, including a Pediatric Cardio-Thoracic Surgeon and a Pediatric Neurosurgeon took 5 hours in the operating theater to try and remove as much of the cancer tissue as they could from the chest area and from the spinal cord. Nomuun spent 7 days in the Intensive Care Unit and a further 10 days in the ward recuperating from this major surgery. The true test of her warrior qualities was how she went through her post-operative care. She was unfazed by the numerous tubes in and around her, cooperating with the nurses who were looking after her and quietly bearing the pain as long as her mother was there reassuring her that she would be well. 

Nomuun with a full head of hair in 2010

Nomuun will be 7 years old this December. She is a bright, energetic girl, loves to sing and is now attending pre-school classes twice a week, while the remaining days are spent in intensive physiotherapy, yoga and swimming lessons to strengthen her legs. She can stand with support, and walks with the help of a walker or when she supports herself walking along a wall. The Therapist is confident that if Nomuun can improve her hip and knee muscles, she will be able to walk with an elbow crutch, and hopefully, to progress to a walking stick for support. 

In pre- school class

The future looks promising for Nomuun. As for Huska and Dudaana, we can only imagine the pain and anguish they went through as young parents; the sacrifices they made and the tears they shed having to see their precious baby go through such grueling treatment. Hope sustained them, but it was their perseverance, the great love for their child, faith in the doctors, and support of family and friends that helped them through their 3 years ordeal in Bangkok. 

For me, I count myself very fortunate to have met this family. They have taught me so much, that in the face of adversity we should never give up, instead we should take each day as it comes with faith and hope, and patience too; that tough times never last; and to look for the silver lining even when the clouds are dark. Somehow the Divine will know to send 'angels' our way to help us lessen our burdens, as was evident in Nomuun's case. A concert was held in Ulaanbator, organised by friends to raise funds for her medical treatment and many well-known singers and artistes willingly came forward to participate when they learned of her plight. 

In the course of their stay in Bangkok with me, I have become 'family' to them since it was not easy for their extended families in Mongolia to take time off from their commitments to be with them. I became Nomuun's "emee", the Mongolian term for "grandmother"! Yes, I have gained a grand-daughter, and a little warrior at that! 

Nomuun on a wheelchair presented to her by Joni and Friends Foundation in Chiangmai 

                                       

                                 
                                  We acquire the strength we have overcome.                                                                            
                                                             -Ralph Emerson-