We haven't posted an update in a long time. Mostly because... there's a lot we still don't know and there's a lot we don't particularly want to talk about. But y'all deserve to know what's up. So here are some updates on Sam's treatment, FAQ-style. How is the clinical-trial drug going? It's done. It was a 5-day course from 8/24-8/28 where Sam just had to go into the clinic once per day for the IV push and then got to go home. Like chemo, it takes a while for it to "set in" (for lack of better medical term...) so we're just waiting for the counts to respond to the drug. They took a dive post-drug, and we're hoping for them to come back up any day now. Are you in the hospital right now? No! And it's awesome! Sam was discharged from the hospital a few weeks ago (before the trial drug) and we've been loving the freedom. Right after the drug was done we were able to head up to Lake Superior for a couple of long weekends, which was fantastic (fishing, hiking, Birkie beach walking, etc.). Lately though, his counts have dropped (counts that help fight infections) so Doctor Longo didn't want us to go quite so far away from the hospital in case Sam were to spike a fever. We compromised and he let us go to Rhinelander this past weekend (3 hours north, instead of 6). Still a nice change of pace from Madison. When you go to the clinic, what is it for then? Sam goes to the clinic twice per week to get blood counts and meet with a nurse. Occasionally he will get a blood transfusion if it's needed. Did you see the American Ninja Warrior finale on Monday? Yes! Wow, those people are amazing. I'm hooked. What happens next? Next Sam will get a bone marrow biopsy to determine if the Dacogen (trial drug) did what it was supposed to, which was to maintain or drop the level of leukemia and allow good counts to come back in preparation for the bone marrow transplant. How's it looking? Honestly, not great. The "blast count" in the blood keeps rising and the good counts haven't moved yet. As the blasts rise, so does our anxiety/fear/anger/all the feelings. Today's counts were particularly concerning, but a. it may be too soon to know how he'll react to the trial drug and, b. everything from labs (blood draws alone) is kind of speculative. The only way to truly know how much leukemia is present is with a bone marrow biopsy. When is the biopsy happening? The biopsy isn't scheduled yet but maybe late next week or the following week? Do you like being married? Yeah! It's the best. How is Sam feeling? Surprisingly, he has been feeling really well. A little sore and tired but most people who have visited have been surprised and delighted at how well he looks and seems to be doing. What's the worst case scenario? Worst case, the leukemia has continued to take over the bone marrow, further replacing chances for good cells to come back. We're not completely sure, but if this is the case there may be not be great options left. What's the best case scenario? The leukemia has dropped or stayed the same (as it was pre-Dacogen), in which case he'd move onto transplant. This (transplant with leukemia still in the bone marrow) is what he blogged about having a 25% prognosis. While that's obviously not ideal, Sam is young and strong and his Dad, who would be the bone marrow donor, has a pretty rockin' immune system (you should see the expired foods that man eats) so, you never know. Do you miss Alaska? Yes, everyday. Wellp. There is is! Thanks for the love & vibes, everybody.
Debra Durchslag
9/15/2015 07:15:53 pm
Jenny & Sam, we really appreciate your latest update as we continue to send our love and positive energy to embrace you. So glad to hear you've been able to get up north the past few weekends and enjoy the big lake and the Northwoods. All our love to you😘
Janelle Bamlett
9/16/2015 06:45:35 am
You all continue to be in my thoughts and prayers. You are an amazing couple! Janelle Bamlett (Sam's dad's cousin)
Emily kintzer
9/16/2015 01:31:17 pm
We are rooting for you, Sam! Hugs to all and we are thinking about you!
Nettie LaBelle-Hamer
9/17/2015 06:32:59 am
This is Tully LaBelle-Hamer's mom. I live in Fairbanks and Tully shared with me your blog link. I am currently one of the Team in Training coaches for the Fairbanks Team running to support the Leukemia & Lymphoma Society. Many teammates are running the Equinox Marathon this Saturday and Sam has been added to the list of people we run in honor of. I have a photo to share that I emailed to Tully. You can get it from him or you can email me so I can send directly to you. BlogStrong! It's Stuart (LymphBlog from way back in 2009)! I am saddened to be reconnected to you under these circumstances; however, I'm delighted to see that your tenacity and enthusiasm remains. I'll try to read and catch up... but wanted to send you my hello in the meantime! Comments are closed.
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