Why another round?

Sloan’s protocol is 5 rounds of chemo and surgery. Followed by radiation + immunotherapy, and then a vaccine (which is not one shot, but multiple over a long period of time). The whole process is about a year. We are 3 months in. 

Sloan usually does surgery after round 3 because their data suggests that there is not a huge difference in the shrinkage of the tumor after round 3. Meaning round 4 doesn’t do that much more.  At least not enough to change the outcome of the surgery. Rounds 4 & 5 are targeting the cancer in his bone marrow. Therefore, doing round 4 before surgery doesn’t really change anything. We are not going off “protocol” like I feared. 

The reason this is happening is because there is no room in the OR to accommodate our superhero. Based off of traditional patients data Jacob should have been ready for surgery on September 4th.* But he is ready quicker. And its Fucking August so things are backed up! And sitting around is not an option. You don’t let cancer sit. This is a war. There is always some action of the front lines. Thus, starting round 4 now and we will get a later surgery date. 

No doctor could have predicted Jacob would rebound so fast. Most kids take 21 days to recover from chemo and Jacob is clocking in at 17. 

But they don’t know what we know.

You know, the power of the Friends of Nightwing. The power of community. The power of love. 

We are now going to have surgery after round 4 and only ONE chemo round after surgery. This could be a very good thing. Steve is pleased. That makes me feel good. He is happy that there will only be one round of chemo after surgery. 


I again am learning to let go. This lesson in P-A-T-I-E-N-C-E. Ugh. I still hate that word. So patronizing right?

And maybe this could be the best thing to happen. I got to look at the other side. 

Don’t we live our life as outliers? Maybe this was supposed to happen because Jacob will be an outlier. He will have so much shrinkage in round 4 that the surgery will be…you know…a FLICK!

So I’m flicking. 

Tomorrow is Day 1. 

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  1. YOU have the best attitude. YOU and Steve are the best parents. Patience is a virtue and no one would expect anyone in your situation to have patience but you do. You analyze the situation and always find the positive for your beautiful Jacob. Every post of yours I read is an inspiration, a teary eyed connection to see how you and your remarkable co-captain navigate this unthinkable journey. We’re all flicking. ❤️❤️❤️

  2. Sent from my iPhone

    Begin forwarded message:

    > From: Nightwing > Date: October 9, 2019 at 9:10:23 PM EDT > To: cleelevin@me.com > Subject: [New post] Eve died > Reply-To: Nightwing > >  >

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