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September 22, 2006
By Margot | September 22, 2006
We didn’t win the Fenretinide lottery. Sammy has a new spot on his leg right below the main spot and the spots that were showing up on the last MRI are now MIBG positive. Dr. Villablanca called us at the “happiest place on earth” to tell us. Dr. Villablanca, Dr. Maris and Dr. Scholler recommended that we start chemo on Monday. We will use a combination of Topotecan and Cytoxan and, if we can, Nifurtimox and ascorbic acid in addition to that. We’ll also do radiation to the main spot at least. Our simulation for that is today after school. I’ll post more details on Nifurtimox in future posts if we can get it. Neil did some fantastic research (i.e. reading every single abstract from the ANR meeting (Advances in Neuroblastoma research) to discover the dedicated doctor who is doing the research on it (Dr. Giselle Scholler) from University of Vermont and the amazing John London (Peneolope’s dad) went through all sorts of trouble and red tape to get it for Penelope and get it approved by the CDC and FDA for use in Neuroblastoma. It is normally used for treatment of Chagas disease which is normally only contracted in South America.
We are also considering a couple of other treatments as next steps:
MIBG therapy – there is a new trial opening that combines MIBG therapy and irrinotecan and doxirubicin which makes it more attractive to us as combo drugs seem to be more effective than single agents.
Irradiated 3F8’s at Memorial Sloan Kettering. We may not qualify for the new irradiated ones though.
Anyway, these are our next options. For now we will go with “ToplessCyclone” – as one of the dad’s on the list christened it.
Despite all crummy stuff going on in the background, the kids had a ball at Disneyland. We went up for the injection for the MIBG on Tuesday morning and were finished by 1:30 or so. We drove down to Disneyland and checked in to the Disneyland Hotel. The kids loved it and we were so glad we splurged and stayed there. They upgraded us to a suite and it was really nice. We went on the Buzz Lightyear ride (which Andy loved), Star Tours (Sammy’s favorite), Pirates of the Caribbean, the Jungle Cruise and then went back and swam in the pool until about 10 that night. We got them each a Pirates of the Caribbean sword (because we don’t have enough swords in our house) and a t-shirt. There were no lines for the rides. I highly recommend the second week of school in the middle of the week as a great time to go to Disneyland. The kids were exhausted by the time they finally fell into bed. As I was snuggling them into the big comfy, king-sized, four poster bed in the hotel Sammy said, “Mom, I like this house. Can we buy this house?” I said, “Well, it’s actually a hotel room but we can come back.” “Oh, darn it,” he said. Andy was still a little scared of all the characters and jumped into my arms every time we saw one. Wednesday we drove back up for the MIBG scan. Neil took Sammy into the scan and I ran around with Andrew and Charlie. It was hard not to be in the scan though we knew if we took everyone up together only one of us could be in there. Neil said he thought he saw a new spot on his lower leg and he did see the spot that had lit up on the MRI. We weren’t sure if the new spot was actually new or if it just looked like two spots and was the same one. After the scan, we drove back to the pool at Disneyland so the kids could go down the slides (they weren’t open the previous night). They had the best time. They went down the slides about seven hundred times. Disneyland was virtually empty. Neil went swimming with them and Charlie and I watched all the fun. They kept trying to go down together and the woman at the top kept trying to get them to wait until the other had gone down but Andy kept sneaking by her. They have so much fun together, hiding from their dad and each other and basically running around like lunatics. It was so cute to watch them run from the pool to the slide eight million times. While we were by the pool, Dr. V called on Neil’s cell phone and let us know that she was calling the new spot progression and that were are officially off the Fenretinide trial. She wanted to meet with us Thursday morning to officially take us off the trial and talk about our options. I can’t say enough about how nice it is to get a scan read the same day. As a matter of fact, Neil spoke with the radioligist five minutes after the scan was finished.
We drove back up that night and had dinner with the Vantrescas who were so lovely and gracious and down to earth. It was really nice to have a place to land that night and for the kids to be able to play with the adorable Benjamin and Renee. Thank you, Diane and Vince. You probably heard enough cancer speak to last you a lifetime but it was sure great to get things off our chest.
We got back yesterday afternoon after talking with Dr. V. about options which I outlined above. None of the known treatments are “durable.” Neil went straight back to work after we got home and stayed until sometime in the middle of the night to catch up. I don’t know how he is still standing. Sammy is in school today. He is limping again and his leg is really starting to bother him. I gave him some Motrin for school today. It makes me sick to watch him and though nothing makes going back to chemo easy – it sucks, the fact that he is in pain makes me want to get it started. It should knock the pain out pretty quickly. We do topo/cyto infusions for five straight days. It is outpatient but will probably take about five hours with hydration and the chemo infusion. There is a lot of diarrhea with Cyto and though our case manager said that thought she could probably schedule the chemo for later in the day, she doesn’t think Sam will feel much like going to school. We did hear from Sarah and a couple of other parents that their kids generally felt pretty good after this chemo so we’ll see how we do. Sammy will lose his hair again which is going to be the toughest thing to tell him. I cried today when I told his teacher we’d probably be out next week for chemo. Poor Mrs. Gage cried too – so sorry about that, Mrs. Gage. I didn’t mean to make you cry, right before class started. We are going to sign an independent study contract for Sammy so that I can home school him (because he listens so well to me when it comes to academics).
My maternity leave is over on Monday and I’m officially back to work which should make things interesting. It’s a good thing I can work remotely. I’ll update when I know more. Thanks to everyone for all your help. I don’t think we’d be keeping it together without all the amazing support.
Margot
Topics: Progress Reports | Comments Off on September 22, 2006
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