Toby has a new go-to website called HopStop.
It’s an amazing online city transit guide that allows him to enter a start address in one field and a destination address in another. He can narrow his results by clicking on different transportation modes (bus or subway) and walking/transfer preference (less street walking/more transfers is his favorite). Within seconds he receives detailed stop-by-stop directions, together with maps and a 360-degree photo of the street destination.
Toby works the site like a pro, adeptly choosing addresses and categories. We take vicarious trips to the Metropolitan Museum of Art and Yankee Stadium, the Central Park Zoo and imaginary destinations. Toby thrills to the familiar iconic representations of the different train and bus lines (orange dot for F, yellow for N, red for 1, 2 and 3), getting more excited as he realizes that he can change the trains by simply clicking on “re-route.” An observer might think that Toby is reading the difficult prompts and links, but he has actually memorized the page design and is able to identify the different words by their first few letters. He has even started to add his own transit ratings to the different train lines. Make sure to check out comments by “Mr. T” on the F and G lines if you have some time to spare.
On Friday, after a week of exhausting full-body scans, anesthesia, fasting and injections, Toby told Dr. Kushner about HopStop. And Dr. Kushner told us about the one remaining hot spot on Toby’s body. We received some very, very encouraging news: Toby’s bone scan was normal, as was his CT, with no indications of bone lesions or metastasis. We are still waiting on the results of the marrows. The MiBG, which is obtained after injecting Toby with a radioactive substance over 24 hours, showed only one hot spot, in his left shoulder. All the other involvement in the spine and collarbone and hips and jaw and legs and arms seems to have resolved. We are so happy to be sharing this news with you! This does not mean that the neuroblastoma is gone; far from it. The cancer is still in Toby’s body and we still have a very long way to go with treatment, but it turns out that the 4th and 5th cycles of chemo were more effective on bone than we imagined.
There are some problematic lymph nodes in Toby’s neck, so surgery has been scheduled for Monday, August 27th. We met again with Dr. LaQuaglia to discuss what will happen. He told us that this surgery will be shorter and less invasive than the previous one… there are nerves in the neck area that can affect the diaphragm and hand function, but Dr. L has not experienced problems before, and has done many such modified resections. Toby will most likely have soreness and discomfort/swelling, but this surgery needs to happen before he will be allowed to move to the next phase of treatment.
Surgery will be followed by a 6th (hopefully final) round of chemo. And then, God willing, we will be able to move on to 3F8 antibodies and radiation, possibly around the beginning of October. Radiation will occur to the primary tumor site in the abdomen, as well as the left shoulder and possibly the neck.
There has been a lot of bad news lately and we didn’t realize how dark that cloud felt until we received the good news on Friday afternoon. Toby’s original MiBG scan in April showed neuroblastoma from head to toe. There were countless hot spots. Now there is only one. And instead, Toby is playing with HopStop. For the first time in months, Stephen and I actually felt giddy, light, playful. My father let out a whoop of exultation when we passed on the news. I hope you all feel it too. Your prayers and thoughts are working.
Love, mooki and stephen
Ed Clark, Christmas Guest
7 months ago