May 24, 2022

Carlene has had more than a few events happen since the last update. She is currently in a PET scan to assess how far the cancer has spread. Yesterday's MRI scan noted that cancer has spread to the bones around her eye socket and behind the eye socket. The progression is causing the interior tissue in the left eye (where the tumor and eye were removed) to protrude forward substantially. It also drives the bones at the back of the eye to press into her brain. You can see the interior tissue already pushing forward in her update from May 14. The progression to date is exacerbated substantially. Photos of the progression are in the attached video and may be viewed at your discretion as the images are sensitive. 

Two days following surgery, I noted a lesion (you can see it circled in the video) above her eyebrow at the surgery site. She has developed several other lesions around her hairline. The MRI scans yesterday show that cancer has seemed to spread to those areas as well. Cancer is basically invading the bones in her skull around the eyes. When Dr. Abramson called yesterday to discuss the findings from the MRI, he expressed how astonished he was with the rate of growth of this cancer. He stated that he has never seen anything like it in his career that spans over 40 years.

In light of the current change in events, there is a severe sense of urgency around deciding what should be done with treatment. One thing is certain, we MUST stop this cancer from spreading immediately. The problem is we really are still in the dark about what type of cancer this is exactly. The pathology from the tumor slides suggests that it is retinoblastoma although the tumor is not following any known patterns of that disease. The bone marrow biopsy shows there is definitely a spread of cancer in her bone marrow. The lab results of the lumbar puncture show no malignant cancer cells in her spinal fluid. 

Our conventional treatment options include chemotherapy and radiation. The radiation should be local to the bones around the eye and the eye socket itself, without affecting the brain (at least I hope). 

Graphic Photo Warning - Cancer Progression Video

********** UPDATE TO THE UPDATE **********

While I was typing this update as Carlene was receiving her PET scan, I was notified that she was waking up from anesthesia. I was then asked to meet with the Oncology, Neurology and Oncology teams for a meeting. Carlene has received a stage 4 cancer diagnosis. She will have surgery at 6am tomorrow to have a medi-port implanted which attaches through the jugular vein and feeds into a central artery in her heart.

They will admit her immediately after that surgery and use that port to administer chemo therapy for the next three days. She will be on chemotherapy for the next 4 months. Radiation, at this point, is no longer a viable option. At the end of four cycles, they will harvest her stem cells and wipe out all of her bone marrow with different and very high dose chemo cocktail and then do a complete stem cell replacement. We have to live here in NYC until it’s done.

This step is absolutely necessary to stop the rapid spread that is happening right now. We have to take immediate action to save her life. Carlene could really use all of the prayers and positive energy she can get as she starts this battle tomorrow. The chemotherapy cocktail they will start her with is very invasive and with many side effects. Carlene was also gifted some alternative medicine from an organic farm. She will begin complementary herbal therapy in conjunction with chemotherapy starting tomorrow.

We can use you continued donation support more than ever. Please consider sharing Coins for Carly with your networks to raise awareness. In addition to donations for medical expenses, we would appreciate sponsors for housing and transportation in New York City. All donations to Coins for Carly are tax deductible as allowed by law. Thank you for supporting Carlene during her battle.