Research Makes a Difference

Lori Miller, mother of St. Baldrick's Honored Kid, Justin, spoke at Fado Irish Pub, in Denver, Colo. on March 12. Click on the link and read what she had to say.



By Lori Miller



"Our story is about the importance of research. Justin has been fighting cancer for almost four years. He was diagnosed with stage 4 neuroblastoma at the age of 3 and he will be 7 next month. Neuroblastoma is cancer of the nervous system and is a rapidly spreading cancer. In a mere six weeks - initial onset of the symptoms to diagnosis - Justin's cancer spread from a tumor that was growing off of his adrenal gland to contaminating 80 percent of his bone marrow. The cancer had metastasized to many bones in his body. The cancer spread to the top of Justin's head and layered on top of his soft spot causing his head to split open  - all in six weeks! It was unbelievable! I am confident if it would have taken any longer to diagnose he would not be here today. Justin was given a 30 percent chance of a five year survival rate and if he relapsed, there is no cure for relapse. This was our introduction to the world of childhood cancer.



Justin underwent six intense rounds of chemo which was preparing him for a stem cell transplant. During this six rounds of chemo we harvested over 20 million stem cells - all of which, when tested, came back positive for cancer. We had one last shot to harvest stem calls because there was research study going on in California that was testing the purging of cancer from a stem cell collection. So over an intense five days, Justin harvested a mere 10 million more stem cells, all of which were shipped to Los Angeles to be cleaned. Never had they seen so much cancer in a stem cell harvest - but they worked on Justin's cells, magnetizing the cancer cells and then pulling them out one by one to get a clean bag of stem cells. After that, Justin went through a stem cell transplant and received those very clean, precious cells back on March 21, 2006 - affectionately known as his re-birthday. He then continued through weeks of radiation and an intense six month antibody trial and in which he was very allergic and had the crash cart parked outside of his door at all times. At that point he was done with treatment and was declared free of detectable cancer. He was off treatment for six months and then he relapsed in his brain. Neuroblastoma is not a brain cancer, but Justin was one of a few recorded kids that this had happened to. Over the last two years Justin has been on many research studies trying to keep the cancer away.



Our current treatment plan takes us to Memorial Sloan Kettering Cancer Center in New York. We have spent almost six months there since Justin relapsed two years ago. The treatment he is receiving is strictly a research study and after each child goes through, the plan is adjusted accordingly. Justin has two more rounds of antibodies left and one more round of 56 day chemotherapy. Justin has been free of cancer since July 2008. Justin should wrap up his treatments this summer and for the first time ever he will start school without having to deal with school and cancer treatment.



So I ask you does research make a difference in the children's lives? I definitely agree that research DOES make a difference. Survival rates for childhood cancers have dramatically improved over the past few decades because of research. Take Justin's cancer for instance, a decade or so ago the survival rate was less than 10 percent. Now survival rates are in the 30-40 percent (still not good, but better), other childhood cancers are much higher, some are even in the 80-90 percent survival rate. However as I mentioned before neuroblastoma relapse has no cure. According to Dr. Khan, one of the recipients of the St. Baldrick's fundraising efforts, 'Because of the rarity of pediatric carcinomas compared with adult cancers it is unlikely that the big pharmaceutical companies will fund global screening of these tumors due to the low cost profit margin.' This is totally the case in relapsed NB and because of this all of the relapse treatment is experimental and all of the relapsed kids are part of the many NB research studies out there trying to find a cure. Last year, St. Baldrick's gave a $250,000 grant to one of the leading NB research projects in the United States. Because of the research grants from last year and previous years - Justin is still fighting and enjoying a fantastic quality of life. Research is expensive, fighting cancer is expensive - but together, our combined contributions will continue to make a difference and less and less children will die from cancer.



We will never know what tomorrow will bring, so for now we live for each day, but please know, as you go to bed tonight, feel good in knowing that Justin is here today because of fundraisers like this and most of all because of YOU.



Thank you!"