Thank you to everyone at Fayette County schools for making Bruce’s day at kindergarten so special before his death. I am so glad you received the recognition that you all deserved. We will never forget what you have done for our family. https://www.kentucky.com/news/local/education/article217430340.html.
Thank you to everyone who made this special day of ‘kindergarten’ happen for Bruce. Bruce has always dreamed of riding he big yellow school bus! Since we don’t know what his condition will be like in the fall, some. Wry special people from FCPS created a special day just for him. We could not be more grateful! #dipg #dipgawareness #defeatdipg #enddipg #school #kindergarten #loveforbruce
This week has been an agonizing one. It has been so difficult to process the news that Bruce’s tumor has progressed. We are mourning the normalcy that we had settled into as a family. I had gone back to work, our wonderful family who gathered to support us felt comfortable dispersing, and trips to New York were becoming routine. Our family was traumatized by the news that the clinical trial, which we were so incredibly hopeful would be the answer for so many children with DIPG - was not the answer for our son. I am paralyzed. As few options we felt had when we first considered what our path would be following Bruce’s radiation - well there are even fewer options now. Bruce no longer meets the strict inclusion criteria for many studies because he is neither newly diagnosed nor treatment nieve. We are so grateful for the many researchers who have devoted their careers to the search for a cure for DIPG. With the help of Bruce’s oncologist and several medical boards and collaborators, we have decided on a path forward. Bruce will begin a new chemotherapy drug on Friday. The medication is cabozantinib: a drug approved by the FDA for the treatment of certain cancers such as kidney cancer. The drug has passed phase I trials in children with other cancers, and phase II trials are currently being conducted. There is no data available on weather this drug has been used in DIPG, but cabozantinib is able to cross the blood brain barrier, and it has been successful against DIPG cells in the laboratory setting. This therapy is given Italy, and we do not expect that Bruce will have to be hospitalized. Bruce’s oncologist felt that this drug was the most compelling option due to the results of genetic testing of Bruce’s biopsy samples. The medication will target a susceptible mutation of Bruce’s tumor. Bruce’s biopsy material has been so precious as the information gained from studying it has guided our choices of treatments, making us more comfortable in the decisions we have been forced to make. #dipg #dipgawareness #defeatdipg #enddipg #pediatriccancer #braincancer #loveforbruce
On Monday morning Bruce woke up with noticeable worsening symptoms. Bruce’s oncologist conducted a neurological assessment and confirmed the decline. The symptoms came just as suddenly as when he was first diagnosed. Bruce has become less coordinated, and his speech has slowed dramatically. Yesterday, Bruce had an MRI. Although Bruce’s tumor was stable just a few weeks ago, it has begun to grow again. We are so thankful for the time we had with Bruce since his symptoms improved after radiation - but we wanted more time. Despite the fact that we anticipated that disease progression would likely occur if the clinical trial was not effective, the news is nonetheless shocking and we feel caught off guard. It is no longer safe for Bruce to take the clinical trial drug ONC201, and Bruce has been removed from the trial. Different tumors can respond differently to the same intervention, and we are hopeful that it will be effective for other children. With the help of Bruce’s oncologist, we will be considering other clinical trials and treatments. Because Bruce has already received the maximum safe dose of radiation within this timeframe; further radiation treatments could potentially be very harmful. Once DIPG tumors begin to progress, no treatments have been proven effective to stop or slow the growth. The tumor will likely continue to grow, and Bruce’s symptoms will progressively decline. There is no way to know precisely what the progressive stage of this cancer will hold for Bruce. The prognosis at this point is weeks to four months. The rapid onset of Bruce’s initial and progressive symptoms is worrisome that we may have even less time. Our highest priority is preserving Bruce’s comfort and quality of life. We are so grateful for the love and support we have received along our journey. We know that we are loved. #dipg #dipgawareness #defeatdipg #enddipg #curedipg #pediatriccancer #braintumor