Update on Drew

As many of you know we have had a lot of questions around what is next for Drew and our family. We met with Drew's oncologist today, and finally got some solid answers. Dr. Neglia (the oncologist) is one of the best doctors I have ever met. He has a way of putting our minds at ease with what is to come. He is also very good at consulting with other doctors to determine what all the experts feel is the best course of action. We had options going to the meeting. Here is what came out of the meeting:

1. Chemotherapy - This is not a good option. The problem with this option is the tumor is small, therefore it is hard to get enough chemo to penetrate through the tumor. This one is off the table as an option.

2. External Beam Radiation - All doctors have agreed this is only a last resort. There is high risk with external beam of secondary cancer (usually bone), damage to the eye, and damage to the tissue in the face. We have taken this off the table at this time.

3. Radiation Plaque - As most of you know we tried this back in February on this tumor. We would have to double the dose of the radiation to get any affect. Dr. Wilson (retina specialist) feels the eye is not strong enough to repeat the treatment this soon without damaging the vision. We have eliminated this as an option.

4. Intra-Arterial Chemotherapy Intra-arterial chemotherapy is a new treatment for advanced retinoblastoma in which the chemotherapy drug is injected directly into the ophthalmic artery (the blood vessel that leads to the eye). The patient is given general anesthesia by an anesthesiologist. A thin tube is inserted through a blood vessel (the femoral artery) in the groin (the top part of the leg) and threaded up to the ophthalmic artery, where the chemotherapy is then injected into the eye. This method of chemotherapy delivery is designed to minimize the drug's exposure to the rest of the body and to reduce side effects. The most common drugs used for this treatment are melphalan and topotecan. The average number of treatment sessions is about three for each eye, each session being delivered at four-week intervals. After a successful treatment, the tumors will shrink. If needed, residual tumors may be treated with laser, cryotherapy, or plaque. This procedure has only been done in the USA for about 8-10 years, however, it has been done in Japan for over 20 years. It is not like normal chemo, in that he will not get sick, lose his hair, have low counts after treatment. This procedure is done in New York, and would mean about 4-5 day trip.

5. Proton Beam Radiation - Proton beam radiation therapy is a form of external photon beam radiation therapy, but it may be more effective because its adjusted dosing delivers less radiation to surrounding areas of the tumor, which helps preserve other tissues and cause fewer side effects. This will help mitigate some of the risks of traditional external beam radiation. This would be done in Boston, and would be 30 days of consecutive treatment. Dr. Neglia is looking into this treatment option.

6. Cyro and Laser Treatment - This is the current treatment we are undergoing. We can only remain on this path if it is effectively reducing the tumor.

Dr. Neglia is leaning toward option 4, with a potential option 5. We have expressed our concerns about option 5, and that we would only go down that path if it will yield better results than option 4 and have less risk. We cannot put the entire family through a month long treatment, without good evidence this is going to stick for the long hall. Tony and I trust that Dr. Neglia will lead us in the right direction, as he always has done his best for Drew in the past. We will get through this again with a little patience (something we have to remind ourselves to have) and time. We ask that everyone says a little prayer for Drew, that the most recent treatment has worked, and that today was informational only. We will return to St. Jude's next week, and will update the blog with results. Thank you to everyone for your continued support. We couldn't have made it this far without you!!!