Here's the latest and not-so-greatest news from the Achesons...

This past weekend, Travis took a turn for the worse. By Sunday night, he couldn't go up and down the stairs, he couldn't walk without assistance, and his balance was so off that it was everything we could do to keep him from falling. (He has yet to fall, so that is a teeny tiny win. And we are now knocking on wood.) I had to call in reinforcements and have had someone here with us 24 hours a day until last night. I knew if Travis fell, I wouldn't be able to get him up on my own and that scared me. He was in bad shape.

We were already scheduled to go to Iowa City on Tuesday for Travis' second infusion of Avastin. But thanks to the latest developments, Travis ended up getting an MRI as well. (I feel like I've written that exact sentence numerous times before.) Thankfully, Travis' dad and his brother Brady went with me to Iowa City. It took all three of us to physically get Travis in the car, out of the car, transported around the hospital to four different appointments, and back home. Travis reluctantly agreed to ride in a wheelchair for the first time since this saga started. It was an almost 12-hour battle. And there may or may not have been a shot of whiskey at the end. 

Travis' MRI showed that the swelling in his brain has decreased but the tumor has continued to grow. Swelling would have obviously been a better option than tumor growth because it's easier to control. I don't think any of us were surprised by the news. The oncologist said there are still some options we can try. However, the options that remain are "last ditch chemo efforts" (my words) that could possibly make Travis' symptoms worse and there's very little chance they would help. I told the doctor that, no, we would not be taking that path. While Travis does not have the ability to voice his wishes right now, I know from previous conversations what his wishes are. It doesn't matter what I want or what anyone else wants at this point. The only thing that matters is what Travis wants and it's my job to make sure that happens. The time has come to focus on quality and not quantity. So here is my cliché PSA to make sure you know what your spouse or loved one wants. And I know what you're thinking, but I didn't think I would ACTUALLY need to know either. 

We discussed whether or not to even do the second Avastin infusion. We know it's not doing much to control tumor growth, but we're open to anything that can help ease Travis' symptoms. The doctor said there weren't any downsides to doing the infusion and since we were already in Iowa City, we decided to go for it. The doctor increased the Avastin dose and instead of waiting for three weeks, Travis will have another infusion in two weeks if we see positive symptom relief. And that is exactly what has happened. Travis has bounced back in a big way. He's walking by himself, going up and down the stairs again, and is so much more aware and coherent. We're leaps and bounds ahead of where we were a few days ago. 

Other than the Avastin, Travis is not taking any other medication, up to and including Tylenol. He decided over two weeks ago that he was done taking pills. I wasn't overly concerned about the two preventative medications he was taking. I have to pick my battles. But he was on a really high dose of steroids. The doctor had explained that when the time came, we would need to carefully wean him off. Alas, no weaning for Travis. He decided on his own to go cold turkey. So when the MRI showed the swelling in Travis' brain had actually decreased, we were all a little surprised. I've had a few people ask me if that was Travis' way of "throwing in the towel." I actually don't think that's what it is at all. Travis has almost zero control of what is going on in his life. He is constantly told what he can and can't do. He's faced with his limitations 24-7. He's mad and rightfully so. Not taking pills every day was one thing he actually had control over. Fair enough.

And while I won the battle with Travis receiving different therapies here at home, Travis won the war. I did schedule palliative care to come here to the house two weeks ago. They agreed with me that Travis needed speech, occupational, and physical therapies: all the things he was receiving at On With Life. We started that process with a physical therapy appointment last week. But clearly, a lot has changed in a week. With input from the medical experts, we've decided not to pursue those therapies at this time. The benefits would be minimal and if it's something Travis truly doesn't want to do, it's pointless to force him.

Based on what transpired this past weekend, we are looking into what the future looks like. Today I can manage Travis' home healthcare needs. A few days ago, I could not. I have been doing some research and have a home healthcare company coming next week to get the ball rolling. Thank you to everyone who has provided resources in this area. Much appreciated!

I have also had an initial meeting with Hospice. And yes, that's a difficult sentence to write let alone say out loud. A nurse met with me here on Wednesday and we filled out all the initial paperwork.  We have not signed on to begin Hospice services yet. Once Travis begins Hospice, he can no longer have Avastin infusions. We know this last infusion has had a positive impact on Travis' symptoms, but we don't yet know how much. If the positive effects last only a few days, we will likely decide that another infusion is not worth it, and we would look at starting Hospice sooner rather than later. If the positive effects keep up, we'll likely have another Avastin infusion or two and hold off on Hospice. For now, the next infusion is scheduled for May 7.

I can't express how grateful we are for all the offers of help and support. I am not opposed to help, but there's simply not much anyone can do at this point. Unfortunately, the one thing we want the most is something no one can give us. You can continue to give us your love and prayers. We feel blessed every day by all our people. 

Fun Fact: I was able to get away this past weekend and head to Iowa City for Theta Mom's Weekend with Emma and Gretta. Our dear friends Bill and Jenni came in from CA to stay with Travis and take care of him. I knew he was in good hands and that allowed me to completely focus on the girls and the activities they had planned. We had a wonderful time. It was over the weekend that Travis started to go downhill. Had that happened before I left town on Friday, I would not have made the trip. And I was none the wiser because Bill and Jenni handled everything being the awesome humans they are. Selfishly, it was a gift for me to be there with the girls, especially since it's Emma's senior year. She's scheduled to walk the stage two weeks from tomorrow.

Love,

Brooke, Travis, Izzy, Emma, and Gretta