David Pagan's Medical Fund

Many of you may know Bert and Lauren's son David was recently diagnosed with a rare form of cancer called Retinoblastoma. On top of how difficult this must be for them and their families, they're getting hit with insanely high medical bills and can use our help. Anything you can contribute would be immensely appreciated. Below are some details on their what they've been through from Lauren.

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David was diagnosed with Unilateral (one eye) Retinoblastoma, stage D (E is the worst) in his right eye. We first saw a weird glow in his eye and were told by our pediatrician not to worry about it. A month later we took him to a pediatric ophthalmologist who knew right away it was RB when she looked at him. She sent us to Wills Eye Institute in Philadephia the next day. Dr. Carol Shields is a world renowned ocular oncologist who specialized in RB. They treat over 50% of all RB cases in the world. We see Dr. Shields and Dr. Say at Wills. David had one tumor on the side of his eye close to his sinus. He had extensive seeding though. Little tumor seeds floating in the vitreous fluid in his eye.

David was seen there on July 6th and had his first Intra-arterial chemotherapy treatment (IAC) on July 11th The plan was for three IAC treatments. The tumor was dead after the second, but they wanted to complete three just to play it safe. IAC is a fairly new and controversial treatment. A doctor at Jefferson Hospital in Philadelphia threaded a catheter through his femoral artery up to his optic nerve to administer chemo directly to the eye.

Two weeks later Dr. Say and Dr. Shields told us that while the IAC was working well on the tumor, it isn’t touching the seeds. They began giving him weekly Intra-vitreous Chemotherapy injections (IVC). They inject the medication directly into his eye and do Cryotherapy to freeze the injection site so that none of the cancer cells leak. The plan was for six IVC injections with Melphalan chemo. After the third one, they told us that the seeds were not responding fast enough. They added Topotecan, another chemo medication and upped the plan to 9 injections. Through everything, David had really great vision in his eye. The doctors pushed so hard with treatment because they were optimistic that they could treat the cancer, and he would still have great vision. His retina was straight and intact one week and 70% detached the next. He lost all vision in his eye in one week. The doctors told us that only 1% of patients they treated had ever had this happen, and they believe it to be due to a hole in the retina caused by the IVC treatments.

There is an option to continue with treatment and go for retina re-attachment surgery later on. The doctors told us that only 4 children ever went for this option in their practice, and it was only because they already only had one eye. There is a serious risk that the cancer would quickly metastasize after the surgery. They all feel that since there is no chance for vision and retina reattachment surgery is very risky, the best option is for the eye to come out. So this is where we are at. They stopped all chemo treatment. He is being scheduled for enucleation surgery some time this week. David had his first MRI this past Friday. We also only had the blood drawn for genetic testing 2 weeks ago. We won’t have results for at least another 6 weeks. The scariest thing is that if the genetic test comes back positive, there is a chance that he could develop RB in his other eye. Given his age, chances are that he will not test positive for the mutation, but it's still scary that that is a possibility. But here we are and are moving forward with this surgery despite the unknown. Regardless they will be monitoring his remaining eye closely for the next few years. He will also have regular MRIs. The prognosis for David is really good despite everything. The prognosis for RB in general is very good. We are lucky in this sense. It’s the best of the worst.