Kristie Sharp Williams
Beating the drum
Last week, I received an email from one of Eli’s doctors, Dr. Johnson from Augusta that we loved so much. He was letting us know that the trial Eli was on had moved up to phase two with its first patient enrolled. Eli participated in phase one of the trial, the most common for terminally ill patients. In phase one, researchers are looking for the maximum tolerated dose (MTD) and recording side effects. Moving into phase two uses those results to target the treatment to the population of patients that most responded.
So obviously Dr. Johnson has had some fantastic success or the FDA would not allow phase two to proceed.
I know that he has even had some success with DIPG, which is a pediatric brain cancer terminal upon initial diagnosis. If you’ve been around with us long enough, you know that success in the world of terminal pediatric cancer is measured by affecting the cancer, not necessarily curing it. So, moving into a phase two trial is wonderful news of some ground-breaking work being done. What I would have given to have had an available phase two trial open for Eli.
Knowing that Eli played a part in the increasing success of this drug and treatment (Indoximod), and just learning that there is success somewhere in finding a less toxic treatment really helps my attitude and mood today.
It is the proverbial rainy Monday. Dark, droopy, and sad. Today, I learned that we lost one of the cancer kids that rode in our Parade of Heroes at Superhero Day. Eleven-year-old Lilly Graham passed away this morning during a chemo treatment session. She was diagnosed with a leukemia in September 2018 that relapsed in June. This death on the heals of last weekend’s loss of one of the giants of childhood cancer research, Riley, who was first diagnosed at age 7 and actively fought multiple relapses for the rest of her life until she lost it at age 18. I never met Riley in person, but she and Eli were both treated by Dr. Sandberg in Houston on the same trial and her mother and I share a somewhat similar personality and became “cyber friends.” That same day last weekend, a long-time good friend, the father of one of our daughter’s friends, lost his battle to brain cancer at the age of 45.
Honestly, I can hardly take it any more, from either direction. Promising drugs and treatments dangled in front of us as triumphs only for us to be beaten back into reality with the news of children dying. Children we know, this is not some kind of vague, distant phenomena. We started Eli’s Block Party in January of 2015, so five years we’ve been in existence. Since then, of the 15 or so kids associated with our own events, we have lost Emma, Leah, and now Lilly, not to mention Eli. From the beginning, we set aside a little bit of money, a savings, that we thought we would grow so that when we lost a kid associated with our work we would pay for his or her funeral (not Eli, other kids). I thought, we will just sit on this little fund and then we will have a nice little pot to help someone. That fund has not ever had a chance to increase because we keep having to use what little bit has been in it. Such a sad statement to the status of childhood cancer! It is getting really tiring to beat the drum.
Eli’s Block Party will be sending something to the family or helping them in some way as much as we can, so please be sure to like Eli’s Block Party page to keep up with this, and all the things that we do. But, do not hesitate to do something on your own, I’m not asking you to donate to EBP if you’d rather not. We take your donation and grow it, then donate it all, but I would encourage anyone to donate DIRECTLY to a specific research work, you do not have to go through a foundation or charity to donate toward childhood cancer. And, St. Jude is not the only research hospital. Dr. Gregg Friedman at Children’s of Alabama, Dr. Ted Johnson at Children’s of Georgia, Dr Giselle Scholler at Helen DeVos Children's Hospital in Michigan, Dr. Gary Archer at the Duke Cancer Institute, Dr. Stacey Berg at Texas Children. These are just a few off the top of my head that I’ve read are doing some amazing things in research at some fantastic, top hospitals. Never ever think that you need to donate to a third-party charity or foundation to help childhood cancer (or any cause, for that matter). Yes, I know, I am with a charity, but we will take your donation and use it to make more then donate it all, if you are not good with that, please, please, donate directly to a specific research doctor’s work to get the most out of your charitable dollar. If you would like my help to finding out how to donate directly to any of the doctors listed above, or to find another work, I will absolutely be happy to. My personal goal is to contribute to stopping childhood cancer and I will do that in just about anyway that is presented to me.