New Treatment Plan |6-23-16|

Mike's appointment with his new doctor from the transplant team, Dr. Shune (Shoo-nay), was yesterday afternoon at 3:00. I could tell I  was nervous about the appointment because I pretty much walked in circles around the house all day. I couldn't focus on getting anything done. I went to the grocery store, but forgot my list, and came home with 3 cases of Gatorade, some pop (save your judgement, i'm in crisis mode!) orange juice, milk, bottled water, iced coffee, chicken, and bananas. Was that my subconscious telling me we're dehydrated over here or something? I'm laughing about it now, because, what else would I do? For the record, we cooked the chicken last night, and Reid has eaten almost all of the bananas.

We were going to find out the results of the biopsy and get the new treatment plan, which had us playing over every scenario in our heads on the way down to the appointment. Best case: The part that was spreading on his last scan was inflammatory tissue caused by the chemo. Perhaps he would just need one more round of the ICE chemo and then be a candidate for transplant. That's what I was hoping for!

This was our first visit to the Westwood KU Cancer Center. It is down by KU Med, so a little further of a drive than the North Campus. This will be our new "medical home" now, as Dr. Shune and their team is taking over Mike's care. I feel like we didn't get to say a proper goodbye to all of our friends at North Kansas City Hospital. The nurses, doctors, pharmacist- they were all so wonderful to us!.... and the food was much better there! :)

Are you impatiently waiting to find out the results? Welcome to my world yesterday. Ha.

Anyways, we met with Dr. Shune and the transplant coordinator after what felt like the longest day ever. The results of the biopsy ended up being the same diagnosis, Grey Zone Lymphoma. So we're 3/3 on that diagnosis.

Treatment Plan:

They're going to start Mike on a new chemo called R-GemOx tomorrow morning. The good news is that it will be a single day, outpatient infusion, although it will take the entire day. No packing an overnight bag! That's cool with us.

They want to do a round of this chemo and then scan him (CT scan) to see if there is any improvement. It is a fast acting chemo that they said would show some damage to the cancer after one round. (As long as it works). We are glad that they will know sooner, rather than later, if this is the right course or if we will need to switch to another chemo.

The goal is to get the cancer that is rapidly, and aggressively growing in his chest, reduced by 50% so that he can get a Stem Cell Transplant. I have news on that, too.

They have decided that he isn't a good candidate for an autologous stem cell transplant, meaning that they will use his own stem cells (bone marrow). He is going to go straight to an allogeneic transplant, (Donor). Mike's brother is the best possible match, so he will be tested right away. After that, they go through the registry to see if there is anyone out there who has submitted their DNA (just a quick cheek swab) and has 10/10 proteins in their DNA that match up to the 10 proteins in Mike's DNA.

We asked them about having people come to the office to be tested specifically for Mike. Their response was, "We don't do that, we encourage anyone who has the heart to donate, to join the registry." We totally get it though, that not everyone wants to join, but I really urge you. You have the power to give someone a healthy immune system, to save their life. It is virtually painless, an outpatient procedure. It does not cost you, except a little time off work, perhaps.

So, here we are. Starting a new chemo tomorrow, hoping it works, hoping we are headed in the right direction. Ultimately, hoping for a DONOR! If someone out there has a healthy immune system and matches up to Mike, we sure would love to borrow your healthy cells to help his body fight off all this crap that is attacking him. His immune system, his body's "surveillance system" has been fired. We are looking for new help. His kids would sure appreciate it, too. As would I.

XOXO

Robin