Holy schamoley, you guys.
Sam and I were blown away by the love you shared the last couple days. I think I may have said that in the past, but this is new. On Sunday, I wasn't sure if I was strong enough to endure this bs again. (And if I wasn't, how could Sam possibly be? I worried and worried about that.) But then, so many of you reached out. Sincerely, when someone says in earnest that they're sending good vibes or prayers, it's powerful. Like, almost tangibly powerful. I can't explain it. Well, actually, I can. Sam woke up today feeling a lot better than he had in a week. He keeps saying he had "vim" today. I really don't know what that means, but guessing based on onomatopoeia and the sheer number of poop jokes he made, I think it's a god thing! Sure, the drugs the team started yesterday could have had to do with it, but he's never responded to GVH drugs that fast, so I think it was YOU. Our friend Mindy keeps saying, "love is all there is," and this weekend, she was so right. Literally, love is all there was. Nothing else went right except for so. much. love. It was swirling all around us so densely that when we needed it, we could just reach up and grab some, and it was always there. Anyway, a common theme in talking to you and reading your messages today was that I freaked you all out pretty good with my last post. Things seemed bleak and scary. I'll admit, I was in a literally and figuratively dark place when I wrote it. I think the biggest problem was that I didn't mention any solution. So, I'm writing tonight to say that while yes, things are a little bleak and a lot scary, THERE IS A PLAN in formation. Aright, I guess that means there is no plan. But, THERE WILL BE A PLAN. More importantly, No One Is Giving Up Here. Like, not at all, even a little bit. Sam is still working toward a cure for this. He could have chosen to hang it up a long time ago and go on hospice. But he didn't. He's here to fight. I hate how cliche that term is, but unfortunately, we all know that "fighting" is probably the best way to describe it. Even though his body decided to take ten steps backwards last week, his spirit, thanks in part to you, ran 10 miles ahead. OK? OKAY? Ok. Glad we had this talk. To reassure all of you out there who love Sam that No One Is Giving Up Here, I thought I'd discuss what we've learned over the last few days about what might come next so that we all have something good to hope for and interesting to read about. Before I get too far into this, I have to say that I am no scientist, so think of this as your 30,000 foot overview of exciting new clinical trials* for curing cancer. To any scientists or doctors out there reading this: I'm truly sorry for all the ways I'm about to slaughter your medical vocabulary. Anyway. First, some background info. Chemotherapy has lifetime limits. The toxicity in your body builds up, and after so much, they worry that impact to your organs will outweigh any potential good that could come from chemo. Sam is at or very near those limits for a few classes of chemo drugs that they'd need to use to effectively knock back his leukemia again. Because of this, the team here in Seattle is exploring a few clinical trials to kill the leukemia** without heavy doses of chemo. So, we've been learning about these low or no-chemo clinical trials for getting him back into remission. Here's how I understand them: chemo targets and kills all rapidly dividing cells. This is effective at killing cancer, but it also kills a whole lot of good cells too, making your hair and nails fall out, impacting your organs, and making you feel like shit. About ten years ago however, scientists discovered that leukemia has its own stem cells, just like humans do. Within the last ten years, they've studied ways to use antibodies to effectively target and destroy just the rapidly dividing leukemia stem cells, and not all the other good cells. They're just now at a point of starting to test this on humans. Because they're not messing with as many good cells, apparently there are very low side effects to these antibody treatments. Some can even be done as outpatient procedures. There were four trials Sam was potentially eligible for on Thursday. Now that he's officially been diagnosed with GVH, he apparently could maybe still be eligible for two of them. I don't know about you, but this all sounds like a pretty brilliant idea to me. The scary part is that these trials are so new that there are no results yet about success rates, or even really side effects or useful things like that. It's fairly uncharted territory. But, when you are looking at uncharted territory or organ failure, the former sounds kinda good. Tomorrow, Sam's O.G. chemotherapy doctor (a.k.a. "Dr. No One Is Giving Up Here") is presenting Sam's case in a meeting of a whole bunch of doctors to discuss what the group thinks might be best for Sam. I'm happy this meeting is happening and will keep you posted. Thanks so much for being incessant cheerleaders, vibe senders, joke crackers, prayer warriors and love givers. We love you right back. *If you want a good opportunity to donate to this research, some of Sam's best friends from high school are skiing the 52k Birkebeiner Ski Race to raise money for Fred Hutch Cancer Research Center in honor of Sam. Here's the link to their page. ...Love. See? It's EVERYWHERE. **Reminder, the only option to CURE Sam's cancer at this point is a bone marrow transplant - a different kind of bone marrow transplant than last time. He can't just have chemo without a transplant because his form of cancer is so aggressive that even if it gets him into remission, it'll only be a matter of time until the cancer comes back. Not all cancers are like this: many people get into remission and never relapse. Unfortunately, that's not the case for Sam. (Exhibit a: this November he got into remission, and he relapsed already last week after only a little over two months.) Anyway, you cannot have active leukemia going into a bone marrow transplant, hence the effort to get him back into remission. again.
Linda Hilden
2/14/2017 03:11:56 am
Thank you Jesus our eyes are on you! Thank you for lifting Sam and Jenny and encouraging their hearts with continued hope. Amen!
marilyn tucker
2/14/2017 03:50:00 pm
There is hope and a cure - ty God - and Sam is willing to put in the time to get better - prayers continue as do thought of you
Jen (Opperman) Reefe
2/14/2017 03:57:26 pm
Continuous thoughts, good vibes, and love. ❤️
Bobbi and Ron Burnett
2/14/2017 05:55:57 pm
We are already planning the next Beluga Daze and your names are at the top of the list. You are an awesome team. Sending our love and prayers. See you on the river!
Mary Babcock
2/16/2017 05:11:53 am
Good morning, I just read your post. First of all, I hope you put all this into a journal. You are a great writer.
Khalial Withen
2/16/2017 11:34:46 pm
We love you both!! Thank you a million times for your enduring fighting spirits! There were northern lights dancing for you here. When things feel so dark, I am pleasantly surprised by seeing our surreal skies.
Craig Caldwell
2/19/2017 04:21:47 am
Thank you for battling through this Jenny and Sam. Your fight is both inspirational and perhaps reassuring to those under similar circumstances. It is possible....God bless you both! Comments are closed.
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