Thursday, March 16, 2017

Time to Push Pause

So last Friday, Tillery had a 9 hour major brain surgery and then was discharged on Tuesday with a prescription for Tylenol that she's never needed. That's how our girl does brain surgery! One surgeon actually commented to her that "It's not drive thru brain surgery, you are allowed to stay a few days and recover."

We have had our share of hard recoveries and delays that last an uncomfortably long time. In fact, having Tillery follow a plan and actually be ahead of recovery is very out of the ordinary, so we are having a hard time processing this! To think that she has to stay home from school and church and social settings for a few more weeks is hard with as well as she seems. It feels like she's right where she was this time last week.

So here is where things stand:
We will return to Cincinnati the first week of April. Tillery will have an MRI to make certain that her brain looks healed from surgery and then we will meet with her oncology and neurosurgery teams. She will have her stitches removed, we will give out hugs and high fives and we will say "see ya later" for 3 months. This will be our new routine: quarterly MRIs and follow ups with the teams. There is no future treatment plan at this time. As this chapter closes, we also close the entire volume. In the future, if there is growth, we will begin again, but for now we press pause on our cancer journey.

This is all very bittersweet.

Yes, we rejoice at how far she has come! Yes, we rejoice that there is no more chemo! Yes, we rejoice that there is no more surgery! BUT, there are things we know...

The chance of survival from a pediatric brain tumor is 66% over 5 years and we are at the halfway point.

The chemotherapy that ran through her veins 64 times has late side effects. We know a child who ended treatment on the same drug 2 years ago and is just now seeing the cognitive side effects.

The chances of developing a chronic health condition as a result of childhood cancer treatment is 95%.

Tillery's team seems to expect to see her tumor grow in the next 2-5 years, or to put that in Tillery's world, Kindergarten - 3rd grade.

We have watched many children leave this world. We have seen many children affected by harsh side effects. We have seen kids beat one cancer and then develop a secondary cancer. We have seen kids who heard the word remission and then had that word taken away.

We will not live in fear. We will also not live in ignorance.

This is why we push so hard for research funding. We know that Tillery's journey is never over. We live with so many unknowns and we push for research to lessen them. We want kids to not only beat cancer, but also to be free of it. We want the dark cloud of looming side effects gone. We want kids to be kids who grow up to be adults. And we want parents to get to breathe again.

We will continue to raise awareness and research funding. We will keep sharing our life and our daughter as the face of surviving. We will never forget the friends we've lost and will work hard to make sure you never forget them either. We will keep being real.

All that said, we hope our time of updating about Tillery's medical concerns is coming to a close. Thank you for loving her so much.

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