Posted by Pat Garcia-Gonzalez on September 29, 2011
On September 8, thirty excited cancer patients gathered at the hematology lab at Philippine General Hospital in Manila to get their blood drawn. They were part of a unique program that would give them the opportunity to test the efficacy of their ongoing cancer treatment. Expected needle jitters were replaced by a party atmosphere. In typical Filipino style, at the head of the party was Rod, a man whose love for his son continues to be the catalyst of help for an entire community.
Rod's son, Mavi was diagnosed with Chronic Myeloid Leukemia (CML) five years ago shortly after his ninth birthday. Since then, Rod has turned his energy to increasing awareness of the needs of this community in his country. He has become the President of Touched by Max, the CML patient organization in the Philippines, he has mobilized key opinion leaders to pay attention to pediatric cases of CML, a rare occurrence; and has inspired several organizations across oceans to work together to improve disease monitoring conditions for CML in his country. Never asking for special treatment for himself or his son, his contagious passion is rendering fruit.
Below is his account of this special day in Manila. In his own words, Rod is able to capture the true impact of the event in each of these families.
"All roads led to the Philippine General Hospital on 8 September 2011 for the unprecedented event involving 30 patients and their caregivers. Office workers filed their absences from offices, kids (including Mavi) will be late for classes, moms and dads and senior citizens had to change their schedules for the day, BUT NOBODY CARED! Everyone understood the importance and their fortunate luck to be part of this! Call time was at 8am. Maverick and I were there at 730am. We lined –up at no. 14.
Nelia and I made separate briefings regarding the sequence of events on how the initiative came about. We told them about the partnership between The Max Foundation and International CML Foundation, and your championing this cause. We helped them understand that this may never happen again, that this could be a onetime possibility, that the patients in the room are so fortunate to be included in the list.
Many are at a loss for words. I was looking at them and they would stare long at the tarpaulin, not knowing probably how to express their gratitude. In the end, it was heartfelt “thank you’s” all over. I coerced Mavi just to write, “Mavi was here”. But I should have known better, he wrote, “Thanks for all the support!”
At last, we made it! What took months in the making was over in 3 hours. Thanks Pat, Erin, Danielle, Nelia, Mila, Nicola, the lab in Adelaide, and the doctors of PGH!
I had to bring Mavi back to school for his afternoon class".
About CML diagnosis and monitoring
CML is a type of leukemia caused by the translocation of two chromosomes, 9 and 22, resulting in what is called the Philadelphia chromosome. Current treatment with targeted therapies is able to suppress the Philadelphia chromosome, allowing CML patients to the possibility of long term survival with good quality of life. However, both diagnosis and treatment monitoring for CML require specialized cytogenetic and molecular testing.
Many countries in the world are still unable to perform good quality testing for CML, the Philippines being one of them. In the Philippines, PCR testing is available yet unreliable; in many countries in sub Saharan Africa, central Asia and Central America, the technology is simply unavailable. Physicians are left to treat this disease in the dark, the equivalent to operating in a dark surgery room.
The Max Foundation, the International CML Foundation and other groups are working together to correct this situation. The September 8th event in Manila was possible through the Diagnostics and Testing programs of the iCMLf and The Max Foundation in partnership with the hematology department at Philippine General Hospital, and the Touched by Max.