Before more doctor stuff, how 'bout some good stuff? This past weekend some friends from Alaska were in town to visit Sam while I visited my family and new nephew in Minneapolis; it was an awesome escape and great weekend. I was sad to miss seeing AK friends, but was happily enjoying the company of my family. From separate states, we brunched, we laughed, we played with the dogs, enjoyed the sunshine, and connected with loved ones. It was great - we both reflected on how 'normal' it felt. (Ryan, Shaina, Steph, Austin, Hanna, Almonds/Barrs/Klotzbachs, Abby and Owen - thanks for the laughs!)
But then today it was back to the clinic and getting smacked in the face by reality once again. (Mondays, huh?)
Sam's labs have consistently demonstrated unhealthy blood cells since the last round of treatment and its frankly scary to watch his immunity fall. This morning though, we were notified that a space in a new clinical trial opened up and Sam is a good candidate. The trial is studying bone marrow transplants* for people with active cancer. Usually, you have to be in remission to get a transplant because, traditionally, success rates are low if not in remission. He'll be the 16th person to participate in the trial. So, medically speaking, we're entering fairly uncharted territory.
The trial will go something like this:
That's the update. It was a roller coaster of a day but at least there are still options for Sam and we have smart doctors and amazing, wonderful, lovely and incredible family and friends.
*If I haven't made it clear, it should be noted that this whole time, transplant has been the goal. All the previous chemo has been in order to get him into remission so that he could move to transplant. When you get a bone marrow transplant, they essentially knock out your immune system and give you a new one from the donor. Sam's Dad will be his donor (but THANK YOU to everyone who has offered or joined the registry!!!) Getting a transplant, though risky (especially in Sam's situation), is the best chance of a cure and of avoiding relapse. Transplant, transplant, transplant. Transplant.
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.