Brad & Noelle Koosmann & Family: Family Time and A New Treatment Plan

I had my next round of scans done for the clinical trial drug on Monday, followed by an appointment with my Oncologist on Tuesday. I know, I know...I should have mentioned it before I went, but, truthfully, I haven't been feeling the best since the Benefit and I knew that I couldn't really talk about the scans without mentioning how I felt. It's been a quiet, mean beast, sneaking up on me slowly. First it started with more pain, then a little more, and a little more. Then I couldn't lift my leg one day while getting dressed. Then it felt better. Then the other leg couldn't be lifted. Then I was back to sleeping in the chair. Thankfully, by the time the chair-sleeping started rolling around, it was time for my scans, so Brad and I packed up the kids and stayed over in the cities for a couple of nights to carve some family time out of it. Monday was spent going from CT scan IV and injection to lab-work at Minnesota Oncology, to having the CT scan done, to having a bone scan done. My dad stopped by for the morning to help keep the kids entertained in the various waiting rooms, and they all behaved really well (even dad!) :)

That afternoon, we headed back to the motel and we (read: Brad and I) laid down to rest (the kids got to watch cartoons, and we pretended they were sleeping too.) Then, feeling refreshed, we went to Sea Life Minnesota Aquarium and followed the kids around, exploring and getting to know all of the creatures. The Stingray Adventure, where they could touch the rays as they swam around, was the unanimous favorite. We followed that up with a pizza party back in our room, and s'mores for dessert, and jumped into bed at a fairly decent time (I was sleeping by 8:30pm.)

After a night of pain and not much sleep (I was awake from 11pm to 4am), we went to see my Oncologist in the morning, ready for whatever was coming our way. My parents came and watched the kids for us while we met with our doctor and staff. We were very happy to hear that my lab-work is looking good and the scans came out looking good as well. But there was one blood level that gave my doc pause, and when he saw how much pain I was in, he ordered an MRI, followed by a PET Scan because his "doctor senses were tingling." Thank goodness for this man and his support staff.

So, Mom, Dad, Brad, and the kids headed to lunch and I headed into the MRI scan. They weren't able to squeeze us into the PET Scan schedule until the next morning, so we said good-bye to my parents and drove the kids to meet Brad's dad, who took them home (so they didn't miss another day of school) and Brad and I returned to Jill and Chuck's house to stay overnight. I finally ate a full meal and had a great night's sleep, then headed back to Abbott Northwestern for the PET Scan. After the scan we headed home to wait for the results.

On Thursday we received a call from my Oncologist with news that my body has been experiencing a mixed response to the clinical trial drug. Some of the fleshier tumors (the ones that had been experiencing the 30% reduction on the last scan) have mostly disappeared. Which is excellent. But my cancer has also been quietly progressing and adapting. Compared to my last PET Scan (which was in November, when I was re-diagnosed, and before I was on the clinical trial medication) they are seeing some advancing of the cancer in my pelvis (which is causing much of the pain) and they found a couple areas on my liver as well.

Where Do We Go From Here

I'm currently waiting to schedule my first chemotherapy appointment for Monday or Tuesday of next week. At that time I'm going "off study" because we want to stay ahead of my cancer, not play catch-up with whatever is happening to respond to the study medication. I'm going to have a port put in (we've been having lots of trouble with starting IV's lately...at least two big pokes for every time one is needed...blech!), which will allow me to get chemo through a permanent spot in my chest instead of getting IV's every week. There are additional, promising clinical trials out there-the one we're keeping our eye on is an immune-based therapy-but I need to have a month's down time between studies before I'm even considered for another one. So that month will give us a chance to see how I'm responding to the chemo drugs. We're also working really hard to get my pain under control. It's better that it was at it's worst point (that evening in the motel), but I'm still sleeping in the chair at home and having difficulty getting around. My team is on top of it, and we're just waiting for my body to catch up.

How We're Doing

Moving on from one of the limited number of treatments available to me is hard, I'm not going to lie. I know at least some of what's headed my way with chemotherapy and that's a tiny bit reassuring and a somewhat larger bit scary. Brad and I both had to take the afternoon to absorb all of this new information. "Numb" is what he calls those periods of time, and I agree. But I am so thankful for him. His initial reaction is to pull me close, not push me away. Having him, and God, by my side makes all the difference when dealing with these bumps. The kids are continuing to do well. We make sure to connect with them regularly about everything that's going on and how they're feeling, but we also make sure to connect with "regular" stuff just as much.

I'll keep you updated when I know further information about starting chemo. Lots of love to you all!

The Future Looks Beautiful!

We arrived at the motel at about 6pm on Sunday evening. We were tired and hungry, but once we filled our bellies with Chipotle, veggies and fruit, we were ready for some family fun! Zingo is the game of choice for the girls, so Brendan bit the bullet and played along so we could all participate as a family.

See! He's even smiling a real smile!

My babies and I.

Next we moved on to Headbands, which is absolutely hilarious to play with Emily, as she just can't help herself and she gives crazy-accurate clues, even though we're the ones supposed to be asking questions. And if you pay attention, on her turn, she lists off all the pictures that are on our heads while guessing what her own is.

Above, Emily is trying to be sneaky and is jumping up and down on the bed to see what her card shows in the mirror that's behind Brad. She's a little cheater, that one!

We're showered and in bed, reading bedtime books.

After Monday's scans we rested up and then went to Sea Life at the Mall of America.

Mom even slowly got herself bent down and was able to feel the sting rays as they swam by.

Brad, teaching Emily how to touch the rays. She was terrified at first, but once she got the hang of it, she didn't want to stop!

Brendan's got it down!

Both girls, draping their hands for the rays to swim by.

Megan, Brendan and Emily, learning about crabs.

The jellyfish exhibit. Brendan quietly came over to Brad and whispered that he kept banging into walls. Hee hee!

Pregnant daddy seahorses.

We've been to Sea Life before, but all three kids are now old enough to be educated and entertained. Brad and I loved watching them focus in on what interested them the most.

In the aquarium tunnels. Emily just about bent herself backward while trying to see everything!

Megan (6), Emily (3), Brendan (8).

Brad, checking out the huge manta ray that swam around in the large tunnel aquarium.

At the end, we sat down and rested (okay, mom sat down and rested!) for a tiny bit. Emily decided that she wanted to entertain us with a freestyle dance.

You could go around as many times as you liked. After a little rest time, we went back in so the kids to feel the sting rays again (above). Our second time through went a little faster than the first time, but I spent most of it perched on rocks or railings or chairs, so I felt fine.