David's Journey with Glioblastoma
David was 10.5 years old when he was diagnosed with glioblastoma in 2003. The Tumor was located in the right Temporal Lobe. The surgeon was able to remove the entire tumor and Dave was started on his series of 33 radiation treatments as well as temodar ( Chemotherapy). His MRIâ€™s were done every 6 weeks, with and without contrast. He was home schooled during this time. (5th grade).
Dave called me at work to let me know he thought I should move his MRI appointment upâ€¦..he said things didnâ€™t feel right. I called the oncologist and arranged for his MRI the next dayâ€¦.almost a year to the day Davidâ€™s tumor came back, the size of a golf ball. Same location. By this time I had gotten my ducks in a row and knew if this beast returned we would head to Miami Childrenâ€™s. So off we went with a new plan. This time the surgeon implanted 8 Gliadel wafers in the cavity that had held the tumor. These wafers are made of chemotherapy that melts into the cavity killing any Cancer cells in that particular area. Since there has been issues and questions concerning the blood barrier around the brain and how effective chemo is this was a more aggressive approach to a very aggressive cancer.
At this point the doctorâ€™s in Miami gave Dave 3-4 months to live and said I should take him home and make him comfortable. I could choose to do chemo or just let him be. Well that certainly wasnâ€™t an option. I went online and found YASG.comâ€¦.young survivorâ€™s of glioblastoma. I read up on one fellow, David Bailey. His story was amazing and he IS a GBM survivor. I called him and he told me to go to The Duke Tumor Center in North Carolina. From there Dave and I met with Dr. Gururangan and he devised a new protocol for David which also involved getting a port since this new chemo protocol was through IV.
Dave began this protocol which our doctors here in Florida followed. After a total of almost 3.5 yrs of chemo (starting with his 2003 protocolâ€¦) Dave had had enough. His MRIs had been clear and he just was sick of feeling sick...so On September 8th, 2006, Dave received his last infusion of chemotherapy. He did remain of tamoxifen (pill) until January 2007.
Davidâ€™s MRIâ€™s remain clear. We are now on a six month schedule for MRIâ€™s. Also, due to the type of chemo Dave had he is now taking synthroid for his under-active thyroid as well as giving himself injections of high (human growth hormone) as his body stopped producing this very important hormone. A small price to pay for being a survivor. It will be determined sometime in 2009 if Dave will continue on high, or if his own body has begun to produce itâ€¦there will always be MRIâ€™s as well as other tests and he will always take his thyroid pill. Again, a very small price to pay.
Dave is now 16. He has his driving license and this year decided traditional schooling was not for him. I withdrew David form high school this October. He will get his GED and continue pursuing his passionâ€¦Stand-up Comedy. Dave began doing this onstage in July 2006. He has been out to California to perform, won a national teen contest, performed countless open-mics and was a special guest for big head-lining comedians as well.
He takes Improv/Writing classes and continues with his passion pursuing and conquering the comedy circuitâ€¦â€¦his wit is far beyond his years and so is his spirit. I am so proud of David.
As a parent it is so surreal to hear your child has cancerâ€¦I am a cancer survivor, stage 3 colon cancer is 1996 at age 36. Nothing compares to glioblastomaâ€¦.and the protocol and surgeries Dave has endured . I have always believed in NOT being the victimâ€¦it doesnâ€™t accomplish a thing and can be draining. My life changed that day in 2003, forever. My older two children and I readjusted our lives and we too began the role of surviving GBM. Cancer effects everyone in the family. My daughter is a second year college student now and my older son is graduating high school this year and going into the fire fighter/paramedic program. I am a single parent so we are a family of four. I found that it is impossible to ever give up. I want to know we have covered all our options and with the research that is always ongoing, I feel there are more opportunities out there for GBM patients.
Financially it has been difficult. I took time off from work and now work part-timeâ€¦though Dave is doing well I feel the need to just â€˜be aroundâ€™â€¦some things are hard to shake but I will tell you thisâ€¦laughter has never been hard to find at our homeâ€¦and Dave is a health nut...I never did buy soda when my children were younger so he has does not drink soda, he also prefers fruit over sweets any day..(all my kids do though) he eats very well and is a work-out fiend. He does cross-fit as well as gym work-outs. He has boosted his own Immune System just through his lifestyle. I feel that whatever we can do responsibly for our own health is a plus. Dave takes supplements as wellâ€¦but he is most diligent about his diet and what foods he eats.
UPDATE: October 5, 2011
I guess its time for an update! Dave is doing very well! He's in college. He graduated high school early and began classes in January 2011...he spent the summer volunteering at Pediatric oncology where he received his treatment. Helping out with the kids going through it and keeping siblings busy by playing with them or reading or just making them laugh.
Dave also has given speeches in order to raise awareness on childhood cancer and get folks to donate to the support team that helped us through trying times both in the hospital and out..like his schooling issues and the effects cancer treatments have on these kids. He has given talks in front of foundations and philanthropists he hopes will help the oncology support team.
Currently he is studying financial accounting, micro and macro economics..praying and hoping he will be transferring to Duke next Fall. Ironically, this is where he received the last protocol...the time when the doctors at Miami Children's hospital gave him 3 months to live...never give up, never lose HOPE. One day at a time.
Always rememberâ€¦there is HOPE. Please feel free to check out Daveâ€™s caring bridge site- www.caringbridge.org/fl/david. This lists his protocols as well as the journal history. My email is also on this page, feel free to contact me!
Kathy Cummings - mom to David Fitting GBM Survivor!!!