Welcome to Maryland |4-18-18|
Mike had his last dose of Nivolumab on March 6th. They had to stop giving him that drug because it was causing some problems with his liver. The doctors decided to go ahead and scan him to see what the cancer was doing. The results from that weren't what we wanted, so we had to wait and see if we could get into a clinical trial at the National Institutes of Health (NIH) in Bethesda, Maryland. The doctors at KU basically told us that they're running out of options and we should try to see if we could do this trial. After a stressful wait, we got an appointment to get tested for their trial for a new therapy called CAR-T therapy. We flew out here and spent a couple days doing tests (scans, bloodwork, etc) and a couple days sightseeing in DC while we waited to find out if he got in.
After we got the exciting call that he was accepted into the trial, we signed consent papers and flew home to spend a couple days with the kids before we had to start everything on Monday.
Now we are back in Maryland. I never realized just how beautiful it is out here. Mike and I both agreed that we could live here. (Just not in a hotel, shuttling back and forth to a hospital.)
Monday they collected Mike's white blood cells so that they can take out his T-cells and genetically modify (train) them to attack his cancer. He will be the 6th person to participate in this study.
Tomorrow (Thursday) he will get another PICC line placed and get a bone marrow biopsy. Then on Friday, he will start a 3 day chemo. After that, he gets a couple days off to rest, and then they will re-infuse his newly trained T-cells next Wednesday. That is also when he will get admitted to the hospital and will be an inpatient for a minimum of 9 days. We are hoping to get to go home around May 10th.
The idea that he is going to be in a government regulated, experimental trial is something that is a little bit hard for me to get my mind around. What happened to the story that "this was an easy cancer and will just take 6 rounds of chemo" ? Wasn't that just yesterday that the doctors in Minnesota were reassuring us that we'd have our lives back soon? Now, here we are, 27months after he was diagnosed..... 35 months since he started having symptoms and pain... and I can't get the scene with the government officials poking around with ET in their isolation garb/tents out of my head.
(please don't let this be like in ET!)
This CAR-T therapy is looking pretty promising. Everyone around me seems much more excited about it than I am. I guess I just feel like I can't get my hope crushed anymore. I can't take it anymore. I'd rather have low expectations and then be pleasantly surprised.
I'm too sore and tired from having the rug pulled out from under me so many times. Mike is sick and tired from being sick and tired. We are quite the pair. Astonishingly, through all of it, we aren't sick of each other yet. So I guess I have that. My best friend, love, pain in my ass. We've made it this far, hand in hand, side by side. And so we continue on.
Xo
Robin
Comments (21)
Really? You could live there? With all those people??? Thanks for the update. Love you!
Sending prayers and positive vibes! I know its hard to be so far from home but it will be worth it! This will be the ONE!
Praying for you all, every day!
Prayers and positive wishes!
Think of you both every day!! So happy to get an update!! Hugs and prayers for both of you!!🙏🏻💞🙏🏻
Here's to CAR-T! Prayers!
Tell Mike to hang in there. I'll be praying that this therapy is the one! We are visiting MD next week and I'll send good vibes on the strong Atlantic breezes. Take care Robin. I'm so happy to hear that you and Mike are still in this together.
Glad he got accepted and you have our continued prayers!! You two are an inspiration!! Keep the faith!! With love--Jeff and Sara and family
Thanks for the update. Have been thinking about you guys a lot. Glad Mike was accepted and prayers that this will be the one. I know it's not easy but hang in there. You guys have been amazing. Praying every day.
Thanks for the update, Robin. Sending strong prayers for your strength and Mike's strength and healing. Hopefully CAR-T will be the answer!
Thanks for the update. My thoughts and prayers are with you two and your family daily & for Mike's healing. Tell Mike to hang in there and you too. Praying for the CAR-T to be successful.
Love you guys!!!
Prayers! Love you guys!
Prayers to you both!! I think of you guys often! I love seeing Mikes snapchats of Washington! It does look beautiful there!
Sending love and prayers to both of you.
Robin, you and Mike have got to be the strongest people I know and I am in awe of how well you two handle everything. We continue to lift not just Mike, but you and all of the family in prayer, as illness affects everyone around the patient. Don't get to comfortable out there....we would miss you terribly if you moved! Matt & Tracey Elias
May God give you the strength to get through this. Saying lots of prayers that this trial will work for Mike. Love you!
I can't imagine the frustration, let down, fear, etc that you all live with daily. However, with that said....I've done a ton of research lately on CAR-T therapy and agree, it is very promising. Have read stories of complete remissions on people. I'll be praying that Mike's name gets added to that remission list! Hugs!
I continue to pray for Mike and your family. I Can’t imagine how hard this must be for all of you. I will see a blue light of healing around Mike . Thanks for all the updates. Gods circle of love surrounds you and yours
Yes, Maryland is a beautiful state. I so wish you could just be there to enjoy it at your leisure. We continue to pray for you both and your family. All cancer sucks! I truly pray his clinical will finally kick Mike's in the arse and be done with all this. Wouldn't that be wonderful? Enjoy your alone time as much as you can. Love and hugs to you.
I am so glad you and Mike can be together through this, both physically and emotionally. Your positive thoughts show in your appreciation for the beauty of your surroundings, in the time spent touring DC, and in the recognition that you two are still strong in your love. It is perfectly natural to be mentally and emotionally tired, and to be angry at those cancer cells, too. Your experience makes me think of those blow up clown punching toys...you two keep getting knocked down again and again, but somehow the weight (faith) in the bottom of the clown keep it coming back up. Stay brave!