Beckett Ryba, the son of the CME Group’s Mildred Ryba, has been battling a suprasellar astrocytoma, a benign but dangerous pediatric brain tumor, since he was 13 months old.
For the past three years, Beckett has also helped to raise funds for Run for Gus, a a 5K run/1 mile walk in support of the oncology and neurosurgery clinics at the Ann and Robert H. Lurie Children’s Hospital of Chicago, where he is being treated. Many of you have contributed in the past, helping to make his team number one in fundraising.
This year’s walk takes place on July 23. Donations to Run for Gus go to help children with brain tumors and their families.
You can find out more and donate by going to: http://foundation.luriechildrens.org/site/TR?team_id=30050&fr_id=1571&pg=team
Beckett’s mom, Mildred, has given us the latest update:
Beckett finished the second year of chemo in November 2014, only to see tumor activity in his first MRI that December. That means that the four different types of chemo drugs Beckett has attempted to take for two grueling years have had no real effect on the tumor.
His neuro-oncology team at Lurie immediately thought we should try an experimental drug in phase 2 of its trial. In phase 1 many kids had 60-70% tumor shrinkage, but Beckett’s tumor needed a certain genetic marker to qualify. However, drug trials are not designed for the patient, but for the drug maker, and we couldn’t get his tumor biopsy tested unless he went south fast.
So we must play a horrid waiting game until the tumor affects his quality of life before giving him more poisonous drugs to try to combat the tumor. We fought for exploratory shunt surgery, which didn’t find a blockage or issues, but miraculously Beckett was immediately better.
This is our fifth year raising money for RFG, and each year we get closer and closer to our goal of 25K. Please help us get to that goal and help look for a cure.
You can see last year’s update here.