And The Plot Thickens (Mike titled this one) |11-23-16|

One year ago today, Monday, the 23rd, Mike had his first biopsy of a lymph node. They told us beforehand that it was most likely Lymphoma. After the surgery, Dr. Hamilton told me it was most definitely lymphoma. I remember that day so vividly. I remember the conversation with him. I remember the room. He said we needed to choose an oncologist. Mike would get a port put in within the next few days and start chemo right away. I remember sitting in the waiting room wondering if I looked different now. If people could see the intense pain in my eyes. I remember when I finally got to see him, and he was still joking around with everyone, that in that moment I vowed to be strong for him and for his mother. I knew this was going to be really hard for her.

Sometimes I think I'm doing a good job at being strong. Sometimes I'm a noodle.

The day before Thanksgiving, last year, was when I got the phone call from the nurse with the biopsy results. I remember standing in Reid's room when she said, "There are no signs of cancer." I was in shock. I had been mentally preparing for what our future would look like for the past week and a half. I called Mike right away and then had to text many people telling them the new news. Thanksgiving was filled with relief. We still didn't know what was wrong with him, but we could cross cancer off the list. I distinctly remember walking into my grandma's house and my Aunt Lori hugged Mike with so much excitement. I had no idea that we were merely going over the little hill at the beginning of this enormous rollercoaster.

All week I've been thinking about what I should write. Mike and I have spent most of the past week being optimistic and hopeful, but also nervous, anxious, and emotional. We've been working on our mental strength. Preparing for Saturday, the 26th. It has felt like such a looming deadline. "Everything has to get done by Saturday." "Mike goes in the hospital on Saturday, and won't come home until March." I've had this conversation so many times. We have reminded ourselves numerous times that this is all going to be ok, and we just have to get through it. We've pretty much just been terrified though.

Monday morning, we had the consent appointment with Dr. Ganguly and Jodi Wilson (transplant coordinator). We joked on the way home wondering if we'd get a phone call again that they were going to postpone it. That night we said, "Well, I guess this is really happening this time."  3 more days.

Tuesday was the last day of school for the girls before Thanksgiving Break. Mike was feeling a little emotional dropping them off, knowing that he won't get to do that until at least sometime in March. Molly's teacher, Kelly Jobbins brought out gift bags for us, and we all got emotional again. The card wasn't signed by anyone specific, just "Prayer Warriors". They went above and beyond. They gave the kids the most wonderful gifts, and also some wonderful gifts for me. We loved watching the kids open all of their gifts, Christmas came early! We couldn't believe the generosity.

Speaking of generosity, we wanted to thank Jeff & Sarah Kramer for being so generous to us, also. You filled up our freezer, and we are in hog heaven. (ha) Thanks for the pork!  We are still (one year later) blown away by the kindness that has surrounded us. Paige Noll, you are nothing short of an angel, and such a gift to us. Joe Weber. We love you so much. Our parents. We couldn't get through this without any of you.

Anyway, you know I can't name all of the names. We are just so THANKFUL this year. More thankful than we've been at any other Thanksgiving.

So, this all leads me up to the phone call we received last night. Around 6:00 last night, Mike got a call from Dr. Ganguly and Jodi....again.

Dr. Ganguly starts out, "Now, I will explain this, but let me start by saying that your admission on Saturday, the radiation, chemo, everything has been cancelled."

Instantly, my mind races ahead... "they gave up on him. they don't think the transplant will work. brace yourself, robin, they're going to tell you there is nothing more they can do. how many months does he have?"

I know, not very optimistic of me.

Mike reaches over and grabs my hand. Dr. Ganguly continues to tell us that there is a study by a doctor who specializes in Grey Zone Lymphoma. His name is Dr. Wilson. Coincidentally, a person emailed me months ago about this doctor, but when I tried to get in touch with his office, I couldn't get through to him. Anyway, although there aren't many people in the study (because this lymphoma is so rare) the results show that there is a good success rate among patients who have had radiation to the specific field, then an autologous stem cell transplant (using your own stem cells) first, and then one year of the immunotherapy drug Brentuximab (what he has been on for the past few months).

So this is what the entire team met about and discussed. They decided it would be in Mike's best interest to try this route before going straight to the allogeneic transplant (donor). That will be his last chance, so why not try something else before we get to that point.

This phone call left us a little dizzy. Mike had asked, "So is this good news?" Dr Ganguly said, "I don't know if it's good news. But not bad news. Just news."

This is how science and medicine work. I know that, and I appreciate that. Things change all the time, and that's a good thing. So now I just have to wrap my mind around the new direction we are heading.

I told Mike I feel like we should be giving these presents back.

We've been up and down, changing directions so fast at times, that I don't even have the energy to talk about it much. Good thing I like the peacefulness of typing it out.

Here's the gameplan now:

Mike will start getting shots to boost his own cell counts next week. It will be 4 days of shots. Then they will spend about 3 days harvesting his cells and saving them for his transplant. After the cells are collected, he will undergo several rounds of radiation to his chest. We don't know exactly how many yet, but we will meet with the Radiation Oncologist next week.

After the radiation, he will get a couple weeks off, then go into the hospital for his transplant. He will be in the hospital for a month, with only a week stay at the Hope Lodge after the hospital stay. So to us, 5-6 weeks away from the kids sounds much more doable than 3 months!

So once again, on this day before Thanksgiving, we are thinking about all we are grateful for. We have come so far... and each day, we get closer to a cure. The journey has gotten a little twisty and curvy at times. But we are getting there.

XO

Robin