"For this child I prayed; and the Lord has given me my petition for which I asked," 1 Samuel 1:27.
Eli at 6 years old
Twelve-year-old Eli Williams is a patient with Children's of Georgia in Augusta, Georgia. Secondarily, he is a patient of St. Jude Children's Research Hospital in Memphis, Tennessee, having been treated there first, then also atMD Anderson, Memorial-Hermann, both in Houston, Texas, before joining a trial in Augusta. He was diagnosed with metastatic (high-risk) Medulloblastoma of the posterior fossa with leptomenengial spread, group 4, as of December 29, 2011 after just turning seven years old. Initial images revealed that he had over half-of-a-dozen malignant tumors in his brain and on his spine, with his spinal fluid also being infected. The second largest tumor, near his pituitary gland, was inoperable. The main tumor was resected at LaBonheur Children's Hospital in Memphis, Tennessee, on January 5, 2012. He recovered well from that with mild side effects despite the warnings of possible deficits in talking, walking, swallowing, seeing. He had a second surgery to repair a tear in the patch from the first surgery. He had a third surgery to insert a Ventriculoperitoneal (VP) shunt from his brain to his torso area, near his stomach, to relieve hydrocephalus. He had a fourth surgery to repair an inguinal hernia caused by the fluid draining to his lower body via the shunt.
He had a fifth surgery to replace the shunt valve with a programmable valve because the static valve was pulling too much CS fluidcausing hemorrhaging in his brain. He recovered from that, but during his second round of chemotherapy it was discovered that he had fresh bleeding on his brain again because the setting was still too high and it was again over-shunting. The setting was changed easily with the magnetic programmable shunt, and he is being monitored. He completed six weeks, five days a week, of radiation (with two of the surgeries taking place during the radiation period). Radiation included a "blanket" of his brain and spine, and then directed, targeted "boosts" to each tumor site.
He began his first of four courses of chemotherapy on May 25, 2011, after a delay of five weeks. The delay was due to the unexpected fifth surgery when chemo was planned to begin. The delay
Eli 7 years old
continued due to a weak immune system that was not recovering even when given a Granulocyte-colony (G-CSF) boost to artificially stimulate white blood cell growth in his bone marrow. The delay was unprecedented, and caused distress to the doctors and family as the tumors had shrunk but were still present after radiation. He began his second round of chemotherapy on time, but ran a high fever on the first day. It was thought he had a line infection, so he was given antibiotics to which he had allergic reactions. The allergic reactions, coupled with the effects of the chemo drugs, played havoc with his body. He became high-risk for sepsis and was moved to ICU where he stayed until his blood pressure was stable and his kidneys were functioning properly. The third day of chemo for that course was canceled because he was not well enough to receive the treatment. After the second course of chemo an MRI showed that only one tumor of the more than half-of-a-dozen remained, which was the second largest tumor located at his pituitary gland. The tumor had shrunk considerably and it was unknown if what remained in imaging was scar tissue, a dormant tumor, or active tumor. A lumbar puncture was also done at that time to determine that his spinal fluid was clear of disease. He began and completed his third round of chemo on time. He again ran a high fever, and was treated with antibiotics, but because of what was learned about his allergies during the second round, he was pre-medicated. Though the course was difficult, he was closely monitored and he received all three days of chemo.
It has also been discovered that he has had significant hearing loss in both ears after two courses, which was expected. The loss is at high frequencies and he may require some type of hearing aid, but, so far, has not. Eli completed the fourth and final round of chemo on August 18, 2012. Because of the hearing loss, one of the drugs was given at a half dose to prevent further loss. The fourth was
Eli at 8 years old
difficult, but lessons learned during previous courses helped control the affects. The chemotherapy treatment included high doses of four chemo meds, and one rescue med.
The standard regimen for each course/round was as follows: On Day Minus Four he received Cisplatin via IV over a six hour period. It was this medicine that was cut in half on the fourth round to prevent further hearing loss. Over the entire treatment of Cisplatin that is a 12 percent decrease. During the six hours on this day, he received a “push” – which is when the nurse hand pushes from a syringe into his line. It only takes a few minutes, but it is intense for him. This is also how they do stem cells, and it is rough – of Amifostine and of Vincristine. This happens at the beginning of the Cisplatin delivery, then again three hours later. One of those decreases his calcium level, so he received calcium according to the loss. On Day Minus Three, he got an hour of Cyclophosphamide via an IV along with a rescue drug called Mesna. Cyclo is rough on the urinary process and the Mesna is used to protect the bladder and kidneys. It was required that he urinate every two hours for 24 hours after each dose of Cyclo. This was repeated on Day Minus Two. Day Minus One was a day of “rest” and Day Minus Zero he received his stem cell transplant and was supposed to be discharged from in-patient status. Only after the fourth course was he well enough to be discharged on time. On Day Plus Six, he received another dose of Vincristine out-patient. During all of this, as he fought nausea and diarrhea and fever, he received two or three nausea meds, Tylenol for high temperature, a
Eli at 9 years old
stomach acid medicine, mouthwash, ear drops, betadine baths, bottom cream, and then any antibiotics - sometimes multiple - that the cultures determine he needed, or that they thought he might need, and Benadryl to thwart the effects of the antibiotics. As his electrolytes got out of sorts, he received any supplementing needed to offset that as well.
Physically, he has significant weight loss, coupled with muscle loss. But, overall, his strength and abilities at this time are impressive compared to other patients. His nutrition during chemo was completely via a temporary feeding tube (TPN) because he would not eat. We required him to get two bites of something each day to maintain some digestive function, and he did the best he could usually pushing to meet that minimum. After each chemo round he received a stem cell transplant. His own stems cells were harvested before radiation and were given back to him during each round on Day Minus Zero. This helped his body’s immune system recover faster after it bottomed out due to chemotherapy. He received blood products often, to which he had allergic reactions, so the nurses learned to pre-medicate. Eli's exit MRI scans were taken September 5, 2012. The scans showed that all tumors and tissue was gone except for the second-largest tumor at his pituitary gland. It, however, showed no change, growing or shrinking, which would indicate it had no live tissue. Furthermore, there was no blood circulation activity, indicating dead tissue. A lumbar puncture was not performed at this time due to a
Eli at 10 years old
questionable CT scan. An Arachnoid Cyst was found near his spinal cord. But, unless it causes problems in any neurological functions, the neurosurgeon is leaving it because it is a benign type cyst.
Eli came home September 14, 2012. He continued on the temporary feeding tube for a month then doctors removed his hickman line. He struggled with eating, but maintained his weight. He eats, walks, talks, and performs all self-care duties on his own. He is well-behaved, agreeable, as energetic as he ever was (which wasn't ever much), interested in activities and subjects. He is a complete and absolute joy. He saw a tutor three times a week after treatment to keep up with school work. He started back to school, returning to his original class, in January 2013 after a year of just tutoring at St. Jude, and while at home after treatment.
He attended a small private Christian school with friends and family that love him. They made special arrangements in preparation for his return and he did well in class. We are blessed to have a school that loves him and wants the best for him. Eli was not on any medication for anything. Outside of St. Jude, we loosely followed a homeopathic diet for
Eli at 11 years old
maintenance purposes. The hope was to give his body the best chance at having what it needed to fight cancer cells trying to find a welcoming host environment. We juiced raw, organic vegetables and fruit for him, and we used organic food when available and tolerated. At the time, oils, a detox drop, lact-ez, vitamin D3, immune support, and a raw vegetable powder are among some other things that the homeopathic doctor prescribed to add to his diet. In reality, what he actually got each day of that varied.
His first four three-month MRI's were NED (No Evidence of Disease). In December 2013, Eli's MRI showed relapse. He had multiple lesions in his brain and on his spine. Less than five percent survive relapse for even five years because there is no durable treatment for relapse. In January of 2014, Eli began an off-trial Children's Oncology Group (COG) treatment plan that includes Irenotecan, TMZ, and Avistan. It was administered by St. Jude. The treatment was low-dose chemo and data showed that it has the potential to add the most months to his nine years at the time of relapse. The data is also clear that the disease will continue to progress, so this treatment is considered palliative. We hoped that in the next few months, as we tried to buy time with the COG treatment, there would be more palatable options for treatment. His first MRI after two months on the COG treatment were encouraging as the tumors had shrunk more than the doctor expected. Two months later, April 2014, the MRI showed the brain stable and the spine clear. In June 2014, the MRI showed more shrinkage, and again in August, 2014, the lesions were almostundetectable. Eli's check-ups were spread out to 3 months. His scan in November showed no sign of active disease, and his body began to show signs of chemo toxicity, so we began to down doseRoutine scans in February 2015 showed new spots in the tumor bed. Eli's cancer began to grow again, so treatment at St. Jude was stopped. With nothing
Eli at 12 years old
available for treatment, four trials were pursued (3f8 trial at Sloan-Kettering in New York, a vaccine therapy at Kosair in Louisville, Kentucky, and Immunotherapy at MD Anderson in Houston), and Eli was accepted into the NOAH protocol at MD Anderson, sponsored by Noah's Light Foundation. It is a phase one trial in which his natural killer cells were harvested and expanded in the lab, then would be injected into the fourth ventricle of his central nervous system. He had an Ommaya Reservoir placed inside his brain, into the fourth ventricle to receive the injections. He wasscheduled for his first injection April 27, 2015. However, after growing his cells in the lab for two weeks, the sample was not pure NK cells. There was an additional, unexpected marker still in the blood. The sample was unusable. As of April 24, 2015, everything was put on hold while MD Anderson doctors requested from the internal ethics committee that they, basically, try again. The committee agreed, and his blood cells were re-harvested. The sample had the same problem, so Eli was pulled from the trial and he was sent home. Research doctors at MD Anderson said they have never seen a cell combination like Eli's, and can not find it documented anywhere in the world. Despite the devastation, Eli's parents continued to pursue the sliver of a slim chance. Paperwork was compiled for a phase II trial at Sloan-Kettering, and two new trials opened. Mayo Clinic opened an immunotherapy trial, and a Houston hospital has opened a trial with the Ommaya reservoir (in the fourth ventricle, which is a new location for an ommaya, and the reason for the trial) using methotrexate.Since the Ommaya was already in place from preparation for the NK cells trial, Eli's parents decided to pursue the trial at Memorial-Hermann in Houston with the doctor that placed the catheter. It was a three-month trial to determine the safest, most effective dose that can be infused in the catheter in the fourth ventricle. It was not expected to cure the cancer, but would hopefully control it a little while longer.The first injection was June 15, 2015, and the trial completed August 28, 2015. The exit MRI three days later showed stable disease from the 3-months of treatment.By the last month, Eli began to show signs of neuro-toxicity. He had a bout with double-vision, slurred speech, altered gait, pain in his legs, trouble urinating, and his appetite was greatly affected.Two weeks off treatment, all of these issues resolved on their own. Despite the promising affect of the treatment, no doctor, besides the trial surgeon (and his offer was only if he was a desperate choice) was willing to continue the treatment because the placement of the Ommaya was unconventional, and there had not yet been research results published on the use of it. So, giving up that anyone would continue to Ommaya treatment, Eli's parents continued a couple of band-aid doses of intrathecal methotrexate with MD Anderson until Eli could get on a new trial. At that time, September 2015, MD Anderson considered Eli to have six weeks to live. Coming home, his parents continued to pursue phase one trials. He was rejected from the Kentucky trial, rejected from the Sloan-Kettering trial, rejected from the Florida trial, was not a good fit for a trial at Stanford University, the Mayo trial continued to be on hold, he was not a good fit for a treatment with a specialist in Michigan,and a doctor in Boston did not respond after initial contact. A trial with the Pediatric Brain Tumor Consortium opened up with an immunotherapy drug called pamoldimide. Since St. Jude is a member of the PBTC, Eli is able to join the trial through that hospital.After being off treatment since October 1, 2015, Eli began the trial with pamoldimide on November 17, 2015. His first scan in January after two months on it showed progression, so he was taken off the trial. Eli was placed on hospice care. We reached out to a doctor in Augusta, Georgia, who had opened another immunotherapy trial that included an arm with radiation, plus temozolomide. Eli started that trial on March 8, 2016, with 18 tumor sites, and heavy leptomeningeal disease. The trialincluded a second round of radiation. Scans in April showed that the diseasehad stabilized, and some spots were either the same, or one large one had shrunk. Scans in June, after two cycles of TMZ wih Indoximod showed that everything had either shrunk or was gone, and the "sugar-coating" was no longer detected. He had gone from 18 tumors with heavy leptomeningeal disease in March, to half the burden. Routine scans at the end of August showed six lesions, one of which appeared to be growing. This was devastating news, as it could be a sign of a third relapse. A scan in September 2016 showed only four tumors, but the one was still growing, and also a second of the four was growing. He had a double craniotomy in October 2016, his fifth brain surgery to date, during which the two progressing lesions were removed.During recovery, he had temporary paralysis of his left side, and could no swallow. He was moved to ICU, and it was found that he was having almost constant focal seizures at one of the surgical sites. He was put on seizure medicine that immediately stopped the seizing, and he began to regain use of his left side.As of one month prior to treatment, all surgery-related deficiencies had resolved. A scan in November revealed that lesions were growing again, and he is back to four spots of concern (two of which are the sites where tissue was removed in surgery) The pathology report from the latest resection showed that his current disease is the same as what he had in December 2011, the original cancer. It has never gone away. A scan in May of 2017 revealed that the disease was rampant in his brain and spine. His blood work was not good enough to join any other trials, nor was he able to handle any high-dose chemo, or get another round of radiation. He was enrolled in Atlanta as a desperate attempt to have access to more drug options, but the treatment was too slow, and the disease overtook Eli by August. About Eli I have been asked what Eli was like and what kinds of things he likes. Well, he is a pretty easy and simple guy. He likes vehicles number one, top on his list for sure, cars, trucks, anything on the road. His favorite is Ford, especially a Mustang and an F-150. His parents sold some personal property, and an online drive raised money for him to buy his own Mustang. He bought a 2014 GT
Premium and has added ROUSH exhaust system and cold-air intake, plus a cool ROUSH decal. He and his siblings agreed on the name "Bruce" for the car after Bruce Wayne, the Dark Knight, Batman's alter ego.He hopes to participate in car shows. He also likes Bugatti, LamborghiniMonster Trucks, Grave Digger is his favorite. He loves Legos, He likes Transformers, with mostly bad guys as his favorites. By far his top three toy likes are diecast cars, legos, and transformers. He loves to read about wild animals, especially snakes and sharks. His favorite color is blue and sometimes red, and he likes to watch movies, but he also likes SpongeBob, Arthur, and Phineas and Ferb. He collects baseball or football cards, although he doesn't necessarily follow any teams or people. He like racing, NASCAR mostly, although he (and we) don't know anything about it, but it has cars in it. He is somewhat of an Auburn fan, but does like to follow Tennessee, too. He also likes old cartoons like Tom and Jerry, Bugs Bunny, old Disney, and he likes the Three Stooges. He loves Angry Birds on his kindle and racing games, especially Need for Speed, Mario Kart, and Need for Speed on his Xbox 360 Kinect, and Minecraft, and Skylanders a lot. He has a Wii U and all the kids enjoy playing 4-player games on it. He received his Make-a-Wish
Foundation wish of a camper just before Christmas 2012 from Bankston Motorhomes in Huntsville, Alabama. After two years of not using it, we decided to sell it to help pay for the Mustang. After his first relapse, the community and his friends raised money for his family to go to Disney World before he started this treatment since we had never been. In February,we visited the Flat Rock Assembly plant in Flat Rock Michigan, where the Ford Mustang is manufactured. It was an amazing experience and a huge entry into the family memory book. In 2015, the Marty Lyon's Foundation granted him a second wish, which was to visit Jay Leno's garage in Burbank, California. It was wonderful. We hope to go to the beach again; we hope to get a fence and a dog; we would like to travel out west to the Grand Canyon or he has always wanted to go to Hawaii (Vic and I went to Maui on our honeymoon, so he has seen pictures).Eli is a shy little guy, not very friendly or outgoing if you meet him, and doesn't really like new people, is socially awkward because he just is not often in social situations and I think he can't hear well in crowds. But he is agreeable more than most kids and tries to always do what is asked of him as far as his treatment and most other things, too. It breaks my heart to hear him talk about it, but he says he wants to drive an F-150 when he gets his license, have four kids when he gets married and he wants to be either a FedEx driver or a police officer when he grows up. He is beautiful inside and out and will forever be a little boy.