A couple of weeks back, we received a call from a young father of five. He was crying as he shared with us that his baby of 6 months had an unexplained swelling near his eye, and he was extremely worried about it. We told him to immediately contact his pediatrician who sent them straight to the hospital where the baby was diagnosed with retinoblastoma, a cancer in the retina. The doctor said that they would need to remove the baby’s eye to save his life. Understandably the parents were in shock. We, of course, told them not to do anything until we could get them second opinions.
There are two top retinoblastoma specialists in the northeast - one in Pennsylvania and one in Memorial Sloan Kettering (MSK) in Manhattan. The family at that point only had Medicaid so they started the process of getting private insurance that would be fully funded by RCCS and would cover the cost of any future procedures or medications that may be needed. In the meantime, we reached out to both providers to double-check whether they accepted Medicaid for an initial consultation. The hospital in Pennsylvania told us that they just stopped accepting it a week earlier and could only see the patient for an out-of-pocket fee, so we gave the family a $2,500 medical subsidy grant to cover the cost of the visit.
Our insurance advocacy team then arranged with Medicaid to give the family a one-time exception for a consultation at MSK. The approval came through right before the end of the business day, leaving us just enough time to call Sloan Kettering to arrange for the appointment, which they granted us, but the doctor was adamant that he would not make a diagnosis without an MRI that would need to be done on site. At that point we did not yet have approval for an MRI from Medicaid, and even though we were confident that we would get it, it was too late to arrange it that day. Generally, Memorial Sloan Kettering will not set up an appointment without seeing the necessary insurance lined up, but we were able to convince them to make that appointment immediately since we were expecting to have the insurance arranged before the MRI test was to be taken.
MSK set the family up with a consultation at 7:00 a.m., followed by an MRI, followed by another meeting with the doctor for his final diagnosis and treatment plan. During the first hour’s consultation we arranged with Medicaid for the MRI, so that by the time the baby was ready to be wheeled in, the insurance was approved.
Unfortunately, during the consultation, the doctor ran some tests and found that the second eye was cancerous as well, and the baby could be in danger of losing both eyes. In the end, however, the doctor felt that since the disease in the second eye was not yet advanced, it would be prudent to perform a laser procedure immediately. The family reached out to us from the doctor’s office feeling tremendously overwhelmed and confused and asking us if this would be the proper treatment. We assured them that it was and advised them to go ahead.
Following the procedure, the baby was wheeled into the MRI. At this point, the father called us once again in tears, saying that he and his wife did not feel emotionally up to having a conversation with the doctor following the MRI. Rabbi Mordechai Aaron Meisels from our medical referral team immediately drove over to the hospital and arrived just as the MRI was over. He sat with the family during the final consultation and made sure that all the right questions were being asked, and that the family understood exactly what the doctor was telling them. The doctor’s final decision was that the baby would need to undergo an intense chemotherapy regimen, where they would inject the chemotherapy drug directly into the baby’s eye. The doctor was hopeful that this would be able to save the eye and that it would not need to be removed.
At this point the child is still undergoing treatment. We are extremely hopeful that within the next few weeks we will hear the good news that we are anxiously awaiting be”H.
RCCS, a recognized 501(c)(3) organization, provides an array of unique services to cancer patients and their families, enabling them to secure the best possible medical care. Notably, among the myriad services offered by RCCS is medical referrals and support, as well as health insurance premiums and medical subsidies, which provide patients with broader access to global oncologists and leaders in the cancer treatment field.