We met with Ben’s Denver treatment team yesterday afternoon to discuss our options. We’ve had many wonderful doctors throughout Ben’s nine years of therapy but Dr. Greffe here in Denver is the bomb-dot-com. When he called me yesterday morning, his first words were “I’m so sorry.” What I like about Dr. Greffe is that he really is sincere and generous with his feelings, and the clinical stuff – which he is undoubtedly an expert on – always comes after he gives a big dose of love. Sensitive moms like me tend to appreciate that. I know he cares about BEN, not just the fact that he has disease. Ben isn’t a specimen. He’s not just a number on a study. He’s a kid. And Dr. Greffe appreciates and embraces that.
So, Dr. Greffe, Dr. Meg Macy, and our nurse practitioner Flori, all came in to meet with us. They had spoken to Dr. Neville in KC to get the update. I handed over the CD’s containing Ben’s scan information to Dr. Greffe that I’d received the prior day in KC. And that picture of his scan. That stupid spot circled by ballpoint pen. Dr. Greffe joked and said, “Wow. Glad they circled it. That really helps.” I laughed because I knew he said that for my benefit. He knows I depend on my sense of humor to navigate this craziness. He just seems to know what people need and that’s what makes him a true professional.
So, we discussed some options. The one that would continue on in Kansas City or Michigan under Dr. Sholler and Dr. Neville, neither Matt nor I felt it was the right study for Ben. The second one in Denver combined a bunch of toxic chemos that would make Ben super sick again. In my heart I felt deep dread about this one. I don’t think the extent of his disease really warrants that much toxicity. I felt that this might be an option for later down the road if we cannot get his disease to respond with a different therapy. Another study in San Francisco consisted of an oral agent. Low toxicity but he might not respond. I think this would be a good plan for follow up. Then, the one Matt and I agreed on was the MIBG therapy. The one our buddy Justin just went through in Philadelphia. Please visit my post called “ISOLATION” to read about our good buddy Justin and his amazing mom, Lori.
Basically, Ben would be given high doses of radiation and stuck in isolation until his body cleared the radioactive agent. It could be up to a week he would spend in isolation. We could see him and he could see us but we wouldn’t be able to be with him. Ben is the kind of kid that can handle alone time. He’s old enough that he can care for himself on a daily hygienic level. I think he’ll do okay with this therapy. He might struggle with not being able to have his electronics (because it would be deemed as radioactive waste and they’d have to be disposed of in a nuclear waste receptacle) but my dad said he’d buy him a DS and some games that he could throw away. My dad is great. He said “I don’t care. I just want him to be happy and have something to do while he’s stuck in there.”
So, armed with a disposable DS, a lot of paperback books and the will to fight, we think that this is the right course of action to treat this stupid disease. We’ve been given a list of locations where they offer this therapy (Denver has an MIBG room built but won’t be open for operation until September – we simply cannot wait that long). Our options are San Francisco, Boston, Texas, Michigan, Philadelphia and Cincinnati. Our first choice is Cincinnati with a backup of Philadelphia. It all depends on where the open study slots are available, but Dr. Macy thinks that Cincinnati shouldn’t be a problem. I’m really hoping for this because we’ll be close to family and friends. And Skyline Chili. Philadelphia would also be a good option because my sister lives close enough to come help out. There are many details to work out. We also need to figure out if he’ll need to harvest more stem cells (he has one small bag left over from a harvest when he was two) and how many treatments he’ll be able to get. Since we only have one bag of backup cells, he might only be able to get one round of MIBG. Our travel to Cincinnati will not be extensive, he will most likely only be able to get two rounds of this therapy at the most. Once he’s done with that and he hopefully responds well, we can get him on that oral medication study in San Francisco.
So, that’s our plan. All subject to change, of course. I felt great yesterday after developing a plan but, admittedly, today I feel down. I know the roller coaster of emotions is to be expected, so I’ll be gentle with myself, but it’s still exhausting. So I’ll lay here, snuggled with my Madeline and my two silly dogs, and connect with Ben and Matt in a couple of hours. I think we’re going to try to do something fun for a little while. Distraction is a good thing right now.
Also, I’ve been overwhelmed by the outpouring of love and support you’ve shown yesterday. It was sincerely heartwarming and encouraging. I don’t want you to worry about saying the wrong thing. Don’t be afraid to talk to me. And, admittedly, something I am famous for is HIDING when I’m stressed out. Don’t let me do that. I will retreat and isolate myself, which is NOT a good plan of action for me right now. My high school friend, Tammy Haney, just showed up at the hospital yesterday. I hadn’t seen her in years. She came to offer her support. She ended up hanging out with Madeline while Matt, Ben and I were in with the doctors. Madeline loved that. So did I. In fact, Maddy kept talking about how nice Tammy is. They played games on the iPad and watched TV in the oncology lobby. It was so good for Madeline. And so good for me. I need the support. I want the support. But I’m afraid to accept the support. Does that make sense? Help me out friends. I’m mentally challenged. 🙂
Will update more as we get information. Thank you, thank you, thank you for everything.
I admire you, Sarah! You and your awesome kids just amaze me. ❤
I agree Sarah, you are mentally challenged… 😉 Just look at some of your friends. You fit in well
Well, considering you are one of my favorite friends your statement rings very true. Love you, wacko. 🙂
You had me at Mentally Challenged…i think we just became soul mates:) I am making a road trip..Cinci or Phili..have car will travel:)
Superfriends… Form of… Mentally Callenged!
Agh. Spelling cHallenged too.
Leave a comment