Sophia has her hands wrapped around her father’s big strong arm. She looks up at us with her beautiful eyes. Eyes that show apprehension. But her smile is politely sweet. She wears a wig – her parents’ attempt to make her life more normal.
But life is not normal now. Now that she and her close knit family have endured 2 brain surgeries, massive radiation, and ongoing chemotherapy.
In August 2006 Sophia began having horrible headaches and vomiting. She saw 8 different doctors in 15 days, bouncing back and forth between the public and private hospitals looking for help and answers.
At first a doctor said her symptoms were psychological due to the birth of her new baby sister. Or other emotional problems. Mauricio and Johana, her Mom and Dad, knew this to be untrue.
Finally, Mauricio had to find a way to pay for a MRI himself at a private hospital – there is sometimes a problem at the public facilities with broken and booked up equipment.
The MRI revealed the tumor. Astrocytoma, grade 2, left side. The first operation took out part of the tumor, followed by radiation completed in January 2007.
Another MRI in late January showed the tumor back and larger: Another operation. They couldn’t get it all and remnants were left.
Now Sophia is undergoing chemotherapy. She has had one treatment with the most effective drug, Temodar, which was available to her free from another patient who died.
Another day we went out to their house to visit the family. It’s 30 minutes outside of town. This is not an easy trip for them to make, over and over; to the hospital. With no car they must take a bus and then a taxi to get there and back, every time. And particularly not easy when you are sick from chemotherapy.
Mauricio has struggled heroically with the financial burden. He has had to sell off his business as a piñata maker and birthday party planner to raise money for past and ongoing treatments and testing.
He has borrowed extensively and is afraid he may lose his house. There is very little time or opportunity to make income now. He had worked hard to get where he was but it’s easy to see that Mauricio will do anything to save his daughter. Johana has had severe health issues herself from the stress.
Schooling has become another issue. There is no free public school that is in close proximity and safe. They cannot afford the closer private school now and when Sofia had attended school the children cruelly made fun and pulled off her wig. For now there is no option for school for Sophia or her brother Simon.
Sophia is much more open and relaxed at home with her brother and sister. Her parents have worked to make the one bedroom where they all sleep a happy cheerful place.
The little community where they live is family oriented and friendly. As we walk around the neighborhood she plays and interacts enthusiastically with friends, her beautiful eyes as bright as any child’s.
Mauricio and Johana must now depend totally on donated medicines. Sophia desperately needs the Temodar supplied by Krebsallianz and distributed through the Hospital Esquela. With this there is hope.