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March 9, 2006
By Margot | March 9, 2006
We met with our two doctors separately yesterday and talked about all possible scenarios. We came to the conclusion that we are going to wait for the next round of scans. I’ve just set them up with for the week of April 10th. It’ll be three days after we get back from Australia and when they are due per the protocol anyway. Both doctors think there is a good chance that it will keep shrinking though we will keep the option of surgery open. If the scans don’t look any better then we may schedule something for the end of April. There are no real answers though and Neil and I are ultimately left with, “It’s your decision.” There are no guarantees one way or the other but then there are no guarantees with any part of this cancer. On our side is the fact that it is shrinking, it’s been there since January, and it is very rare to relapse at the tumor site after radiation. Most kids relapse in the marrow. The radiologist at City of Hope was very optimistic that it is not active disease according to our onc. Not on our side, is that it’s lighting up on the PETscan which could just mean it’s healing or it could mean that it’s active disease. We just have to take one day at a time and, as our friend Joe Monaco keeps telling me, quoting Dori from Nemo, “Just keep swimming.” Some days I feel like we are swimming through the school of jellyfish but if we can keep bouncing off the tops, we’ll make it through. It’s been raining here for the last couple of days and is supposed to rain all weekend. It’s been the kind of week that I keep thinking of that song, “It never rains in California, girl let me warn ya, it pours, man it pours.” The waiting is tough but I have to remind myself that we’re in relatively good shape either way with clear bone marrow.
Neil is up at the NANT Neuroblastoma conference this weekend. He’s working on fundraising and marketing ideas for NANT. He was very honored to be invited. I’m hoping he’s going to learn all about several new trials promising to cure this disease for us and all our little friends fighting it. Hey, I can dream right?
Sammy is still fighting ear infections. We’ve cleared up the outer ear infections so he can wear his hearing aids but we are on the third type of antibiotic for the middle ear and sinus infection and are seeing an ENT today. Yesterday Sammy decided he didn’t want to go to school anymore (he’d been out for two days for blood check and because he didn’t feel well on Tuesday). I had to literally drag him into his classroom and then he had a great day. He made goals in soccer and learned where we live. And (and I know that by writing this I’m guaranteeing that when he’s fourteen he won’t tell me anything) I asked him if he played with Rachel, who keeps drawing him pictures that say “dedicated to Sam,” and he rolled his eyes and shook his head with a big grin and said, “She just can’t keep her eyes off me.” It cracked me up. Andy is officially out of preschool. He’s much happier to stay home with Elizabeth and play Ninja turtles. We were gone most of Wednesday talking with the doctors and he was so happy to see us when we got back. He kept saying, “the family is back together again.” He got a little stuffed dog in the mail from Grandma Sara and named it Redongelo (the same as his big dog he got for his birthday) so we now have big Redongelo and little Redongelo. Don’t ask me where he came up with that one. We are going to visit a new preschool on Tuesday that the amazing Lisa Bonebrake got us into. It has a long waiting list and the director said to me, “We would do anything for “Lisa.” We all just love her.” So we’ll see how take number two with preschool thing goes for Andy.
Our Make a Wish Trip is coming up fast and we are all very excited. They will present it to us at a dinner at Sammy’s Woodfired Pizza on the 21st. Thanks to everyone for their kind notes and phone calls, we are hanging in there. It helps that aside from the sinus infection, Sammy is feeling great and full of energy.
Margot
Topics: Progress Reports | Comments Off on March 9, 2006
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