Our meeting today with Dr. Sholler went much better than I had ever hoped for!! Over a year ago, I had heard about a Phase 1 trial they were doing called the Genomics trial where basically they go in and take a sample of the tumor, analyze the genetic make-up, DNA, etc.....and test the tumor against a couple hundred known chemo drugs, and then customize a personal treatment plan of medicines targeted for your specific type of tumor. Well the Phase 2 arm of this will hopefully be opening in a few weeks up here and she said that Tristin would be a good candidate for this! They are still waiting for the FDA approval before they can start and they never get in any hurry about anything which I don't get at all when you've got kids that are in desperate need of these new therapies!! Bronde and I have been wanting to do this for so long now and to hear her talking about this as an option for us was just emotionally overwhelming for me. I honestly didn't know when she came in the room if she was going to tell us "sorry, we just don't have anything we can do for you"......I had no idea what was going to happen and to hear her offering this trial to us when it opens was just a huge blessing and I just felt like a huge burden had been lifted from us. Praise God!!! It's been very overwhelming the past few weeks being in limbo and knowing that Tristin was already past due on receiving treatments. I kept praying that the Good Lord would lead us in the right direction and open the right doors and he has! Thank you to everyone for keeping us in your prayers and helping us get through these past several weeks!
Some more good news is that we actually got to start on a new treatment today!! Dr. Sholler didn't want to wait several weeks for Tristin to start on something so she put him on the DFMO trial. Basically, since the trial is closed, she will get him the compassionate use approval. Its 4 pills twice a day for 28 days. best thing is that there's no side effects, treatments can be done at home, quality of life is amazing! So we will come back in a month and rescan. If things are stable or improved, we can opt to stay on this up to a year. Dr. Sholler is really nice and caring and everyone at the hospital has been very helpful.
After all this today, I got back to our room and was just emotionally exhausted and had the best 4 hour nap ever. Basically, we've had over 2 weeks of total uncertainty of what to do, where to go, and all was resolved today and I'm whipped but couldn't be happier with how things went.
Also, I want to tell you about some great friends we've made up here. Before we left, my firefighters union Local 820 reached out to the local union of the Grand Rapids Fire Dept and told them we were coming up this week. A firefighter named Travis Gurd got in touch with me and offered to pick us up from the airport. Not only that, but he didn't want us to be stuck at the hospital without any means of transportation so he loaned his car while we are here! I really felt bad because that's way beyond being helpful but he insisted and wanted to help. I was really blown away by this act of kindness. He's checked on us each day and made sure we were fine. We had the honor of going out to dinner with his lovely wife Dana and her wonderful mother Kim and his beautiful little girl last night. They've really made us feel at home being so far away. Truly great and very caring people. Tomorrow night he's going to pick us up and go down to the firehall and eat dinner with the guys.
I also wanted to say thank you to Carolyn and Trisha. They're a wonderful family we know from Sloan that live near Grand Rapids and go here as there home hospital. Carolyn has checked on us several times and asked if we've needed anything. Very sweet of her. Her granddaughter Laura will be inpatient this week. We saw our wonderful friends Jessica and Brooke today also from Sloan. Dr. Sholler put Brooke up to squirting Tristin with her water squirting flower :) Brooke is on the Phase 1 of the Genomics trial and got good news today that her scans were improved! And our home clinic NB Rockstar buddy Tater got news today that he is NED!!
Thank you once again for everyones love and prayers. I'm so thankful we have a plan in place now and Tristin is on a new drug and a new path and we are on our way to reaching NED!
With Love, Hope, and Faith,
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