It’s “Moon Day” but I’m not going to talk about that….

Here’s the scoop on the Bean (he’s recently asked me to stop calling him this but I didn’t think my readers would mind):

Dr. Greffe called to say that he’s consulted with Dr. Maris at Children’s Hospital of Philadelpia (CHoP), Dr. Matthay in San Francisco, and Dr. Cohn in Chicago. They are all Neuroblastoma experts. They concur with Dr. Greffe’s plan to give Ben two rounds of chemo, scan to see if the tumor has responded, and then possible resection of the tumor after these two initial rounds of therapy.

Ben will receive a port sometime this week (which is an outpatient procedure). A port is much easier to care for than a broviac, which is what he had before. With a port he’ll be able to bathe, swim, and won’t have to fight with the dangling “tubies”, which can be quite hazardous (easy to pull out of the chest and greater chance for infection). We are also going to set up a time to harvest some more of his stem cells because a lot of the therapy we’ve been hearing about requires using clean cells. We know his marrow clean at this point, we might as well get them while the gettin’s good.

Then, on Monday, July 27, Ben will begin chemotherapy on an outpatient basis. He’ll spend 1/2 day in the hospital receiving a chemo cocktail of topotecan and cyclophosphamide for five days in a row. We can go home each day after he’s finished (I’m glad we live fairly close to the hospital!). Then he’ll have approximately two weeks of rest. He should, if he’s up to it, be able to attend school. He is going to miss his first day of third grade, which is next week (July 28 – we’re on year round schedules here). He will lose his hair again and might even stop his menstrual cycle (yes, my odd attempt at humor). Same old side effects as last time: hair loss, sterility, secondary cancers… all that “fun” stuff. Oh, yeah. We’ll have to give him shots in between his chemo treatments, too. I can tell you I didn’t love giving Ben shots when he was 2 1/2, I’m sure it won’t be much fun to do that to him at age 8.

There are currently NO studies in the Children’s Oncology Group  (COG) that Ben would be eligible for. He is a “strange case” in that he relapsed so late after initial therapy. So there’s not a lot of research to go on. After this initial bit of treatment is done we might look into antibody studies at Sloan-Kettering in New York City or at St. Jude in Tennessee. It all depends on how he responds. I don’t care about the travel. I’ll pull him in a wagon if that’s the only way to get there. However, if anyone has access to a corporate jet – please look to see if you offer “angel flights”. I’d really rather not walk that far.

So. We have a plan. At least for the next little bit. We just told Ben and he honestly did not register any emotions that could be labeled as “sad”. As soon as we explained catheter surgery, chemo, hair loss, missing that first day of school, shots, he jumped up off the couch and started playing with Madeline again. I’m trying to learn from him, but I just haven’t found that groove. I’m worried. I’m mad. I’m heartbroken. I’m panicking. Occasionally hyperventilating. But we’ll get him through this. And we’ll be okay. We all will.

Thank you for all your love, prayers, and support. I sincerely appreciate all of you.

Love,

Sarah

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One thought on “It’s “Moon Day” but I’m not going to talk about that….”

  1. Mother of the Bean, you have been my hero right along side Ben all these years, especially in the way you CAN and DO find humor in the midst of agonizing human emotion. Thank you for putting your game face on when you have to and for taking it off when you can’t. Ben has one thing going for him this time – resilience… he gets the biopsy, he bounces back. He gets the news , he moves on. The shots – well, he deserves a few tears – double yuck! I know it’s not all gonna be that simple going forward but he’s showing us the way. My heart can’t be any more proud of him and the Brewer Family.

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