Thursday, August 29, 2019

Grady’s Diagnosis

Well here we are... this is hard for me to share, but I’ve learned from many past experiences that bringing community into our struggles is always the better way to go.

We’ve always known Grady was special, we just didn’t realize how special. 🥰

When Grady was about 2 weeks old we noticed a small bump on the back of his head. It didn’t raise raise much concern at first but it continued to grow.

We spent the next year and a half in dermatology appointments. We treated the mass as a hemangioma for a while. Medications didn’t work and it continued to grow.

We decided to surgically remove it when Grady was about 1 1/2 (Summer 2018). Just a couple months later, we found two more masses also on the back of his head. We did a PET scan and did surgery very shortly after.

Pathology was a long process. Months later, October 2018, Grady was diagnosed with PMMTI. Primitive Myxoid Mesenchymal Tumor of Infancy. At the time there were only 20 other cases world wide. (There are now about 35.)

Grady recovered from these surgeries so well and the tumors did not hurt him in any way. We realize how blessed we are that Grady is happy and very seemingly healthy. Because Grady was so healthy otherwise and we saw no other signs of tumors, we moved on as normal.

This cancer is so rare and recently discovered, that there is no treatment protocol. The few known cases were much more severe, tumors found on the spine. Chemo was used to treat these patients but hasn’t been entirely successful.

But that brings us back to now. Grady is 2 1/2. After removing his fourth tumor on his neck in April, I began to dive into research. I’ve spent hours  reading medical reports, googling just about every other word 😉. I’ve combed the internet looking for other families dealing with the same thing.

When I discovered yet another tumor on his shoulder, I knew things were about to change. And that brings us to today. I’m in the waiting room while Grady is having a PET scan. It’s strange how it took 5 tumors for me to feel peaceful, but I know God is with Grady and our family. Just in the last few days I have made some amazing connections. I’ve started relationships with other moms who’s babies are are being treated for PMMTI also. They have helped connect me with doctors across the U.S. who have experience with this rare cancer.

We don’t know what tomorrow holds, but we pray that we find the right team of doctors and make the right choices as how to move forward treating him.

If you’ve read this far, thank you. And thank you for joining us on this journey. ❤️

6 comments:

  1. Love and good vibes to you and your fam. ❤️

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  2. So glad you’ve found support in the community and other moms/doctors who know how to approach this. I think you you all nearly every day. Sending love & healing thoughts for your continued strength through this. Thank God for Grady, indeed 💗 ~Leslie (& Frank & Hazel)

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  4. God bless you and your family. We have started a prayer group and have powerful prayers dedicated to Grady. May The sunlight of the spirit shine light on you as you walk this journey.

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Grady’s Diagnosis

Well here we are... this is hard for me to share, but I’ve learned from many past experiences that bringing community into our struggles is ...