Day 77- THIS IS LIFE NOW

The counts were low... very low.

So, instead of a simple heel prick and see ya later, we ended up spending the whole day getting a transfusion. I always panic over that small bag of red generosity like it's going to be something awful... always to find that the rosy cheeks and happier disposition at the end are totally worth it. With doctor's orders for 5 more days of shots, we finally got home almost 12 hours after we left. When am I going to learn my lesson and start packing that book I always mean to bring?

Our MRI has been scheduled for the end of April... after another dose of chemo. After the ultrasound showed no progress, our oncologist did a physical check for the tumor and said that it just wasn't changing in size enough to stop treatment yet. As much as we had prepared for that news, it still stings.

Our team has now requested second opinions from every leading children's center in the US. Some were at our request, and others they sought out themselves. I appreciate how thorough they are, and how they are putting so much effort into getting a lot of eyes on Redden. His tumor type is 'common' (at least in the obscure children's cancer world!), but his tumor's reaction to treatment is puzzling. With this many people looking at his case and agreeing that this is the path they would advise we feel confident that all we can do now is wait and trust. 

Our goals conversations are starting to change about this thing... we are looking less and less at each treatment as a finish line. This is just life as we know it, for the indefinite future.

Fact is... the chemo might not shrink the tumor. If it hasn't by now, it might not ever. 

Once I typed that sentence above I just sat here for awhile staring at this screen. Trying to figure out how to follow that. I can't say that I'm ok with that information. I can't even pretend to be encouraged. My gut feeling is defeat. And fear. We're playing by all the rules. We're doing everything we can. Why is it not good enough?

Deep cleansing breaths... as my parents would always tell me when faced with something difficult.

If the chemo doesn't shrink the tumor, there are several different strategies. The one that seems to be most likely for his case is to continue with chemo until he literally grows out of the tumor, leaving it proportionally too small to cause harm to his body. Then surgery, or if we're lucky, just close observation to make sure it doesn't harm surrounding organs. 

We don't know what that means, or how long that could be. The tumor is somewhere around 60-70% of his abdominal cavity, and guessing how big he would have to be to 'outgrow' that size makes my head spin. I like goals. I like plans. I like answers.

And I'm learning that I'm having to let all of that go, and just try to make it through the moment I'm in.

We have a lot to figure out. If this is our life now, this cycle that runs on 21 day increments and has me in the hospital every third week for full days of chemo... well, that's just terrible. And we need to find a better way to deal with it. 

And you, our village of people... you are carrying us through this. I can't believe that this far in to this journey (73 days!!!) we still have almost everything we need at our fingertips. We still have food on our table that I didn't prepare... and on the many days that 5pm marks the moment my emotional stability officially gives out, this is our saving grace.

And I'm grateful. I'm grateful to be loved. I'm grateful to get to love. Every moment with Redden, Nolan, and Arlo is a blessing. These boys have brought immense joy into our lives. They have made us parents. They have shown us aspects of ourselves that were terrible, and they have made us better people. And when we're not focused on the cancer and the stress, and we stop and focus on the now, we know that our family is perfect. Our baby... he's PERFECT. 

In about a month we will be moving out of our carriage house and into our farmhouse. It's been a long time coming, and it's become a labor of love that has taken a village to complete. Neighbors, friends, family... they've all put in countless hours to get our home not only livable, but beautiful, and I've shed many tears at this humbling experience. It's taken a village to give us a home and keep us on our feet. And I know it will take a village around us to get us through this new life.

This album, from my friend Michael Van Patter, for today. I grew up with him and his wife Hannah, and when they found out about Red, we connected again. You see, their son Watts has been battling a different type of cancer, Infantile ALL, for about 2 years now. We've been following Watts story and praying for him... watching in awe at how his parents handled his challenging journey. The night we first found out about the word 'cancer' in our lives, I poured over their story for hours, finding so much comfort in their honesty, relating in a brand new way to their pain, and holding on with them to the hopes for both of our sons. It's a connection that nobody would ever wish to have, but I'm glad we started our journey knowing we weren't alone. There's a lot of horrible in the childhood cancer world. But the warrior children, and the parents that walk alongside them, are just beautiful.

Listen to the whole album, especially 'The Mystery.' I listened to it while driving to our clinic visit and cried the whole time... every word meant something to me. 

Thank you for putting song behind what so many cancer parents feel Michael. Thanks for being strong, inspiring, and amazing Watts.