Seattle visit

Met Julie Park, chief oncologist here at Seattle Children's. Dr. Felgenhauer uses Julie for a lot of advice so we're actually getting a lot of wisdom from Dr. Park. She's a neuroblastoma specialist, whereas Dr. Felgenhauer is more of a general oncologist. Dr. Park was pretty good, very knowledgeable in the research and treatment of neuroblastoma.

Dr. Waldhausen, the chief surgeon, spoke with us also. Reviewed with us the results of the MRI. So the tumor is still an inch in diameter. I mistakenly thought that the mass was one centimeter in diameter but it really is one inch in diameter. So there's two options, just pick which is the lesser of two evils, I guess. Option 1 is to do the surgery to try to remove the mass. There are 4 major risks involved: 1) loss of mobility in her arms and hands, mostly the right side because of the nerves are surrounding the tumor or the tumor is surrounding the nerves, which ever way you look at it 2) possible partial loss of her voice, the tumor surrounds nerves associated near the voice box 3) something with internal leakage that would be treatable but would be a tough process to treat it. I really didn't understand it but didn't like the odds 4) the tumor is also surrounding the vertebrial artery (not the carotid artery, like Dr. Thorne at Sacred Heart said) which, if not removed correctly, can cause a stroke.

At first it was explained to us that the tumor was surrounding the carotid artery and that if the carotid artery was damaged during surgery, Jovee could die or suffer a massive stroke, or have massive bleeding. Dr. Thorne also said it was high risk because if the carotid artery was damaged, Jovee could die but Dr. Waldhausen said that one could still live because there's the carotid is only 1 of 4. Dr. Waldhausen said you could live with only 3 functioning artery.

Anyways, surgery is pretty high risk given the possibilities of 4 major things that could happen because of the surgery.

The other option is to not do surgery and proceed with high dose chemotherapy and the stem cell transplant and high dose radiation. Because surgery is not done, the higher doses of radiation will definitely have adverse long term effects. The possible immediate effects of higher dose radiation could cause deformity in the chest area, where the radiation was performed. I don't understand how the deformity will exactly happen but that's one of the side effects of the higher dose radiation. The radiation will cause the bone to grow funny or stunt the growth of the clavicle near the tumor. And the other long term side effect is the possibility of the radiation causing a second form of cancer, long term.

Anyways, it was / has been a pretty sobering day to have to make these decisions the next 24 hours and knowing that these/this decision on which way to go will effect her future.